Life With Lewy

1 Year Ago Today.

2010-01-05T21:29:00.000-08:00

Catching up on MY Life, at Turbo Speed.

2009-12-07T15:21:00.000-08:00

SO. Life has swerved in many directions, sometimes in all directions all at once, since my last post. Moving on without Lewy got easier...moving on without my Dad didn't for quite some time. I finally dealt with the death of my Mom at a snails pace once that chance arrived...once I didn't have to deal with Lewy and his incessant games. It was really an interesting experience feeling such deep grief about something that happened 4 years prior. I still get teary-eyed every now and then when I think of them, especially given what life has brought my way recently. I wish they were here to see that happiness isn't just a wish upon a star for me anymore. I wish they were all here to see that good things do happen if you are patient enough. God, I'm getting teary-eyed just writing those words.

Okay, deep breath.

I've received many e-mails and messages thanking me for my blog, for writing our experiences, asking me how I am doing now, and even a handful of offers to add my blog to their website, book, or even a publishing venture...something I am still mulling over. I have to thank all of you back, because there were many days while Lewy was present that I couldn't bare the thought of one more entry in this blog, but I did just in case it helped even one other person going through the same thing.

I think I've officially dealt with the running-for-first-place-to-catholic-guilt I had. It took me a while to realize I did the best I could...I questioned myself almost the whole past year wondering if I had done enough to make my Dad's world a little better. My final answer is YES I DID. Maybe I didn't make LEWY'S life easier...but I made my Dad's better. I know that now.

So...in answer to the "how and what are you doing now?" question, I will now answer in my usual, rambling-on manner...I assume you are all sitting down.

Even months after Daddy passed, I kept thinking about what life had been like for years. I thought about Papa...his illness, his death, and how his final wishes were disregarded, how Nany deteriorated so rapidly after he passed, and how her death and what remained of her life (the material objects) was made into a circus as well. I thought about how my Papa, despite Nany being one of the most difficult people I've known, loved his "baby"...she was a blunt, controlling woman that not many of us understood most days, but they HAD something, despite that they sometimes fought like cats and dogs. Sometimes they seemed like polar opposites and fought with passion...but in the end...observing it years after...when my head was finally clear...they really had love.

Then I thought about how my parents didn't.

They had fear and obligation.

They were miserable, but couldn't part each other because they were bound by an angry silence and a committment lost years ago. They'd let their lives slip by, it was too late, they were too old, they didn't have enough money, they couldn't make it alone anymore. Only death made them part, but for all the wrong reasons.

I thought about statements both my parents made over the years about each other, how they would do things differently if they could and how they both wished to escape each other sometime, someday.

I thought about how my Mom was in her last days, how she kept asking how I was, if I was happy...which I tossed aside, though certain thoughts and people ran through my head when I thought about happiness.

I thought about how my Mom had this glimmer of happiness in her eye right before she got sick the last time because there was a man she worked with who paid her much-needed attention. It was just a man whom she would have some short, sarcastic, witty conversations with...and that was all it was...but I saw HER come through during that time. She became feather-light and had this giddy little laugh...I remembered teasing her about it...about her "boyfriend". I wondered if he missed her.

I also remembered how my Dad was in his last days. How he was so confused but still spoke the truth in layers on certain days when Lewy gave him a break...and how the truth always held what I'm saying now...that he wanted to be away from my Mom, but that he was afraid of that whole concept...afraid of looking a certain way for certain reasons to certain people. Fear and obligation. Though she had been gone for 4 years, Lewy didn't let him remember most days that they weren't together anymore. He was still afraid that leaving would hurt his kids, that he needed to stay for his kids, that when they all got out of school he'd leave...surely then he could leave her. I imagine Lewy had a good laugh at that, the bastard.

Then it dawned on me that, though I'd sworn since childhood that I would never become them, that I had. I was in a marriage of fear and obligation. My god, I really was. A marriage where we were stuck together though the feeling we may have once had for each other was long gone, if it ever was really love at all.

My husband had been diagnosed with bi-polar many years back and it was a daily struggle to get him to be an actual participating part of our family. When it was convenient or he felt like it, he would, but that was extremely short-lived and the mental abuse that came along with his inner anger and struggles within himself were getting too difficult to excuse or feel the need to explain away. I wasn't me anymore, at least not around him. I had to be the responsible one. The one who took care of everything. The one who found a way to pay the bills or creatively stretch dollars when he would empty our account on a whim and have nothing to account for. I was the one who calmed our kids when he would scream for no reason. The one who called everyone we knew when he would leave for days and show up looking like he'd slept in his car...which is exactly what he said he'd done. I had lost myself in other people's heads...in other people's mental anguish was me, clawing to get out and run...but I had to stay and be the one who made everything aesthetically pleasing and functional.

Months after mentally healing from the life I had been living for so long, I finally caught a glimpse of something I hadn't seen in years...Me. I actually saw myself and almost didn't recognize who I'd been though I felt this magnetic inner pull to run toward this girl I saw as soon as I could.

What was so stupid was that this glimpse was via something I fought against...this ridiculous online madness called Facebook. Friends had begged me to join so we could share pictures of our children...and I had reluctantly joined...only to cancel it the same day. I didn't have TIME for such nonsense!

Weeks later I joined again at the incessant peer-pressuring of friends, and I started filling out all the silliness about what I like, the things I think about, the music that moves me and quotes that I have always liked. Seeing these silly little tidbits of my personality that I had had to let go of to a certain extent to deal with other people's mental illness and disease made me smile...there I was...the goofy, sarcastic, head-in-the-clouds, hopeless romantic that had been strangled into oblivion...there I was, in writing, on a flimsy online friend-collecting site. Good god. Freakin' hilarious.

But...these simple things on this silly online site reminded me what my dreams were and where I thought I'd be at this point in my life. And I was WAY off course.

And...these things...they reminded me of him...the one I let go years ago because it wasn't to be.

So I typed his name in the 'search' bar...on this ridiculous thing called Facebook.

There he was.

I agonized over what to say, what he may be doing, or the things I knew I surely would not want to know. After practicing my message many times over, I sent a generic one-liner like, "Hey, what's new with you?"

He wrote me back right away. He was still married, had had a baby with her, and was still with the Fire Department. When I accepted his friend request, I IMMEDIATELY went back to the day he joined this FB insanity and read everything. I had to know what I'd missed. I had to know, even if it made me sick, and it did.

What I saw was that he was just as unhappy as I was, and that he had sunken into the same lethargic role-playing game of "making things work" that I had. I saw that in many ways, he didn't seem the same...he seemed to have morphed into a person who actively, yet unconsciously, drowned his unhappiness and easily plastered the "I'm doing okay" face on. Just like I had. And that wasn't me either...so I wondered if HE was still in there. I was going to find out. And though I was horrified of these things I saw, I was relieved. He wasn't happy. He wasn't happy. And I knew I could change that.

Once we started talking, it was obvious that nothing had changed...if anything, our friendship and the longing had grown deeper through our absence in each other's lives.

Life was about to change. At turbo speed. And Lewy wasn't invited.

Moving on. Life WITHOUT Lewy.

2009-05-28T14:19:00.000-07:00

I just realized that it has been ages since I've posted. Life is moving on, slowly but surely, without Lewy's presence...which is sad and wonderful all rolled in one.
I think I've pretty well dealt with Daddy's death now, and all the death's I "never had time to grieve". It was quite a whirlwind being smacked in the heart with all that, all at once. 7 deaths crashed down on me like a ton of bricks, as if I had just been told about them, although I had been living and dealing with aftermath and piles of paperwork that followed it all for years. I guess you just do what you have to do in order to survive at the time, to get through, to get things done...especially if you are the only one doing any of it.
For a few weeks, I can definitely say I felt depressed. I've never felt that way before. Of course I've been extremely sad and cried about many things in my life, but never "depressed". I see now just how destructive that could be if you were prone to drinking or anything else along those lines. We have no alcohol in our home, and I've never done drugs or anything like that...but I definitely packed on a good 5 pounds from eating masses of coffee ice cream!
I am still receiving bills from all of Daddy's care...even from the VA who told me they had taken care of everything once I squared away the actual day he died for them. Sheeesh! Fibbers!! But, what else is new?
And, I suppose I'm going to have to call Roswell because no one ever sent me a photo of his Veteran headstone...assuming it's surely been installed by now...?
Other than that, I don't have a lot to report regarding Lewy and the life we lived with him for what seemed like such a long time.
Our family is trying to move on, grow and find peace in what we learned on this journey.
I'm hoping one day to make this into an e-book or a properly bound one, time will tell.
I will post if anything happens, and plan on keeping this blog open until I decide what to do with it...
Until then, I hope life is treating you as kind as possible, and that Lewy naps every now and then so you see the person you know is still inside...

Liberty Mutual Commercial.

2009-03-30T21:12:00.000-07:00

First things first...I really don't like Liberty Mutual.
When I was selling Nany's house, they were a nightmare...they were Nany's house insurance company. Liberty Mutual was the one that sent my cousins a check for thousands of dollars for a false re-roofing claim with NO proof of who they were or claimed to be. All they did was tell someone over the phone that they were "the executor of the will", if you can believe that!? BUT when IIIIIIII called, found this all out and an "investigation" followed, they gave ME the third degree and would barely tell me anything because they said they "weren't sure if I was authorized" even though I was the ONLY person "authorized" at all and I had the legal mumbo jumbo to prove it, unlike other people who are apparently really good liars over the phone. Liberty Mutual even had one of their "investigators" call me, and the guy actually told me that he didn't feel Liberty Mutual was at fault...but that this was just a "simple domestic issue" and that IIIII should "just call these cousins up and get the money back."
Holy COW!
Needless to say that guy got a piece or two of MY mind before I slammed the phone down.
ANYway, that aside...last night on the tube, one Liberty Mutual's "new" commercials from this "responsibility project" campaign they have going came on.
There's a "middle-aged" woman and man in a car, it's raining outside, and the woman is very upset...she's in the passenger seat and the guy is driving.
I know I won't get this word-for-word, but bear with me...
She says something like, "This isn't the first time Dad's gotten lost", then they pan to an elderly man walking into a diner alone, looking a little confused.
They pan back to the people in the car.
She's crying now and says, "I don't think Dad can live alone anymore", and they pan back to the elderly man sitting in a booth eating.
The guy driving the car says, "What are you going to do?"
And the woman says (with a very sharp tone), "What am I going to do? He's our Dad."

Update: (April 21, 2009)
Since I originally posted, this particular commercial has had different "endings"....another being that the woman (the daughter of the man with dementia) tells the man in the car with her, "You're part of this family too".
Either way, despite my severe dislike of this company, I can appreciate that they are putting that message out there.
Hopefully the right people get the message.

Thoughtful people.

2009-03-24T13:50:00.000-07:00

After I got back from the errands I got delayed from earlier by Mr. Etiquette Master, there was a message on my machine...
It was from "Immaculate Heart Radio"...which I think is everywhere, but I believe this one was based in Sacramento/Fair Oaks (?). Anyway...someone apparently donated money to them in our honor...?
We donate to all kinds of places/charities, so I had to listen to the name again...and I've never donated there, nor did I know it existed.
That is so, sooooo nice.
I have NO idea who did it, but thank you so much.
Had the station not called to thank "us", I would have never known...an act gone unnoticed...which, actually is sometimes the best way to spread your generosity...but I am thoroughly glad that I now know.
Thank you again, whoever you are.

Dementia IS Contagious, and a lesson in bad manners.

2009-03-24T12:13:00.000-07:00

Good God, man. I am demented. Scatter-brained. Idiot!
You would not believe the lengths I have gone to organize my Office, my own mounting piles of papers, unfinished text, stories, jibber-jabbering, bills, artwork, and of course, Daddy's things. I got an entire file system JUST for his bills, legal matters, etc....YET...today, as I am trying to get out the door, the phone rings and...the caller ID says it's the U.S. Government. You don't even want to know what went through my head when I saw that, but I assumed it was the VA or something related.
It was.
A very to-the-point guy said exactly this after I said, "Hello?"...
"Yes, I'm calling...(pause)...about an application for a Veteran's headstone for a Mr. Roy Frie and I need a copy of his Marine discharge papers...(pause)...and you can fax that to...(then he gave me the number)...and you can put that 'attention to' Larry".
And then he hung up.
I didn't get to say anything but hello.
Did the guy think I was an answering machine? He didn't wait for the "beep" if he did...but if he realized I was a person...uh...is that what we've all come to...?...that you state your reason for the call in a run-on sentence and then hang up? If I called the phone company, waited that inevitable half hour to get a real person (who is probably in India) and said, "Yes, this Jane Smith, account number 2121...and I've called because your service stinks and you overcharged me fifteen dollars...credit my bill right now and tell your CEO that I demand that customers be dealt with in a timely manner" Click.
I am so tempted to try that now...would it work, would someone call me back and tell me a thing or two about manners, or would my bill then be charged an EXTRA fifteen dollars?
ANYway...this put me into a panic because I could not, for the life of me, for almost a half hour, find ANYthing related to my Dad's discharge papers....in all my micro-managed organization.
I finally threw myself into my desk chair at the computer and placed my getting-hot-and-red face into my hands...and then it hit me...I remembered...that in order to avoid this VERY thing happening...I had so lovingly placed his discharge papers into my swanky leather bound folder when I traveled to Roswell for the almost-missed burial.

I am a genius.

A half hour LATER!

So then I faxed the paper to this Larry, etiquette master extraordinaire. Too bad he doesn't teach a class...I would sooooo sign up...imagine the things I would learn!

Oh, the VA...just GOTTA love 'em...

2009-03-19T10:23:00.000-07:00

Yeah...so as I've mentioned, I have always received and paid Dad's bills. But...once he got the CEPS program and they took over his SS check, etc., and of course since his passing, I've ignored everything that came in. It's done, over with, gone.
No one is responsible for anything anymore. There's no estate, Finito. Nada. Adios.
WELL. I have been receiving what appears to be the same bills from the VA for months now. Before Daddy passed, I was forwarding them to CEPS, and they didn't pay them, so they kept getting sent back to me.
One time a couple of months ago out of curiosity, I opened one and it was all this nonsense about how "because they had not heard from him, his previous VA benefits were canceled" and now he owed something upward of $10,000. He was in THEIR care at the time, at a VA hospital, yet "because they hadn't heard from him...".
Total crock. I had to laugh. So typical of the VA.
Well, I was starting to get a bit annoyed at all the VA-related stuff filling my mailbox, so yesterday, instead of (again, again, again) writing in huge black letters, "DECEASED, Not At This Address", I opened it.
It was a bill, complete with interest, no less!
I called the number for "Questions about your Bill".
Turns out that the VA has in "their official records" (which are NEVER wrong, how dare you even think such a thing?!) that my Dad passed away March 16th. That's only two days prior to my call to them about this, so at first I was treated like a criminal trying to get out of paying for legitimate charges.
I laughed out loud when the lady asked me "if I was sure" that my Dad didn't pass away March 16th...
Uuuuuuuhhhhh, yeah, I'm, um, pretty sure.
Wanna read my blog?
Haha.
I had to ASSURE her that he had indeed passed away January 5th, and she tried to connect me with the "proper people" to make this "official" but they were on the East Coast and already closed. Well of course.
I called those people today, and was again sorta treated like I was trying to pull one over on them. She said I needed to fax a death certificate to "prove his death". Okay, yeah, yeah, that's fine...but I don't need to be treated like an insane bill-dodger while you're dealing with me, people!
But I guess I should mention that she DID say she was "sorry for my loss" before she got off the phone with me.
Gee, thanks.

Crap-ass Blogger and Google

2009-03-17T09:32:00.000-07:00

I just spent the last two days trying to access my account. Every time I tried to log in, it told me that "they had determined that my password was too weak and they suggested changing it".
At first I thought my computer had a bug because I have never seen a message like that before, but I decided maybe I should change my password because I have had the same one the whole time.
And then I had to change it again.
And again.
And...again.
None of the new passwords worked and it sent me into this spiraling hellhole of "your password doesn't match" and the "your password it too weak" message would be repeated over and over even though every time I changed the password, it showed me that ridiculous color bar that says whether you have chosen a strong password, which it said I did.
Of course there is no legit "help" in the help center unless you are an idiot and the real problem was that you were entering the wrong password.
With all the technology we have, why do untold thousands of people have to waste time with "help center" that are NO help? What's the point?
I was getting really upset that my blog was gone. I kept thinking that all the hours I spent detailing my Dad's illness was lost to me, or that someone had taken it over...I had no idea. I was able to access my gmail account just fine...which is the same account/password connected with my blog, so all I could figure is that someone was a genius and figured out my "there is no way anyone will ever figure this password out" password, or my computer was hacked, or that blogger sucks.
I now know the answer after two days of changing passwords, but I'm wondering if I print that here that my account will suddenly be unaccesible yet again.
Freakin' new, better, technology my butt.

Just little details now.

2009-03-15T10:02:00.000-07:00

I am still a little stuck in a state of "what the...?", but life is moving on. We have been as busy as can be with home projects and the like, trying to catch up on all the fix-it stuff we were too consumed by/with Lewy to get to. That's nice, but strangely, it's made some of the projects that I was looking forward to not as fun or satisfying.
I finally received the paperwork from the Mortuary to send off to the VA for Daddy's Veteran Marker. I was shocked that there were actually other options than the "plain, flat" marker...there was a pillar-type of stone made of granite that I found a little more obvious, eye-catching, and better-suited, so I chose that one.
I was told that once the stone was in place, someone from the Mortuary could e-mail me a picture of the marker, since I have no other reason to ever go back to Roswell. I hope that's true, because this will somehow all seem unfinished until I see that. Funny how we rely on these things to bring us closure...I mean, Lewy's taken my Dad, it's over, I know that...but we emotional humans need these odd little piece's of "concrete evidence" to really close the door for us sometimes.
My weirdo neuropathy and muscle twitching has subsided quite a bit since Lewy has left my life...proof that my Doctor's were right...not that I ever questioned this...but stress was making it ten times worse. It's still here, for sure, but it has lessened to the extent that it's "manageable" now, I guess. I did break down and buy some ugly Birkenstocks to help the pain in my feet, and that's helped too, but overall, the reduction of stress in this portion of my life has been good, despite that my Dad had to leave us for me to get that. I know that every caregiver who has lost someone can totally relate to that. Good things coming from bad things...how do you fully accept that and enjoy it?
I don't know, I'm still trying to figure that out.

Good GRIEF, Charlie Brown!

2009-02-23T18:54:00.001-08:00

No1DaughterofLewyDad made me realize something: that my problem right now...all of this feeling lost, aimless, kind of depressed actually...yes, I'm sure some of it is my health junk going on...but most of it is the fact that I never had time to grieve. It's finally caught me. Life always took over, maybe for a reason...maybe life stayed so hectic because there was so much more to come and I had to be on my toes for it...I couldn't be stuck in the grieving process...I had way too much to get done!
We have had seven deaths in 7 years in our family. Well, but, to be fair, it really all started a few years prior, with hubby's Dad. Having your Dad die at a young age is never a good thing...and though we had been dating for almost a year, I had never met his father because his parents were separated at the time it happened...and I know it forever changed hubby because of the fact that his last contact with him was strained and terrible, and his death was caused by being struck with a car while living in another state.
Papa died March 7th, 2002. Not to discredit my Dad, but Papa was the father my own Dad never was, and his death shook me in ways I still can't really explain. I was pregnant with my daughter and supposed to be on bed rest for complications, but we drove 2 states away to New Mexico and he held on until we got there.
Directly after this, my Mom was diagnosed with lung cancer and the prognosis was never good. During her recovery, I was diagnosed with thyroid cancer and had surgery in 2003. Three days before I went in for my month-long quarantine for radiation, January 2004, hubby's Grandpa passed. Hubby really loved his Grandpa, and because we live in CA and they lived in New York, none of us would've been able to attend the burial, but it was a slap in the face knowing he "couldn't" go...because of me.
June 5, 2005 my Mom died and I was immediately thrust into Lewyville. I can't believe it has been that long now since that whole journey started...I never had the time to stop and think, my God, my Mom isn't here anymore. She's gone. Of course I "knew" that, but I never REALLY stopped to think about it. Of course I've cried about it, but I've just realized that the reality of it never truly had the chance to sink in...I just went on because I had to...it's what was necessary. I have been so busy with lists, and Lewy, and lists about Lewy, and keeping Lewy in line that I never stopped and let it hit me, my God.
January 3, 2007, Nany died at the golden age of 91, but it was definitely something just like Lewy that took her too. And like Nany's death, it wasn't just the death that happened...along with it came a whole life of paperwork to sort through and close down. I handled closing down my Mom's life, Nany's, and now my Dad's. I'm only (just) 37. People keep saying how odd it is that someone "my age" would have all this happen so young...is it really "so young" though? I hadn't really truly thought about that much until now either.
And all in the last year, hubby's Grandma died, my Dad's sister died, and then my Dad died. It's so strange to realize that my Dad and his sister, both only in their 70's, passed within a short time of their mother. How odd is that?
My parents and all my grandparents are gone (my Mom's parents have been gone since I was little). My hubby's Dad is gone and all of his grandparents too. And we have no relationship with his Mom for a million reasons I couldn't possibly re-tell here without whipping out the bad-word dictionary and a mental health reference book.
And...not that I now have some reason for my funky-headed behavior/feeling lately...but it now makes sense. I've been thinking A LOT about Papa, my Mom, Nany, my Dad, and everyone who is just no longer at the end of the phone line...I can't believe I was able to just go one with my life and not see what I was doing...busying myself into not truly seeing what was missing from me. That is why I can't find me right now. Part of ME has been gone this whole time but I just didn't have the TIME to acknowledge that before. But now there is silence. Now that I am looking around wondering what the heck I'm doing...reality has hit. I don't like it.
Sunday, the wife of the man who runs the support group I've gone to passed away. I visited her at the nursing home she lived at once, but it was because I was looking for her husband to bring him Christmas candy. She has been in a sort of vegetative state for some time...and I did not know her other than what her husband shared about her. But her death hit me. I couldn't stop crying. I thought I had lost my mind. But now I see what her death opened up for me, it opened up what I have been holding in all this time.
Of course...death is part of life...it happens, and you deal with it. I know I've "dealt with" the deaths, but I guess I just never fully grieved them and it's hitting me now...along with all the stress that came with life at the time...too much to write here for sure. OY.
Perhaps the reason that I have had such a surge of flickering lights, alarms going on, weird little hellos and bumps in the night lately is because they see I am in a funk...and they are trying to reassure me that everything is okay, that it will be okay...that IIIIII am okay.
Okay.
Deep breath.

Lost without Lewy?

2009-02-20T18:53:00.000-08:00

I am finding it difficult to remember who I was or what I did before Lewy. The last 3 1/2 years were so jam-packed with Lewy and all his antics that life was ALL about Lewy. Now, I look around, and I feel lost.
I am trying my darndest to get back to "me", but it has been so much more difficult that I could've imagined.
I hate to admit that I was relieved and looking forward to going back to a "normal" existence, but I think I'm realizing that I have never been, nor do I want to be, "normal".
I am good with panic, stress and situations that call for immediate hard-decision-making. I'm good in emergencies, I think well under pressure. Now, having so much of that stuff lifted off of me, I, well, don't know what to do with myself.
I have a zillion projects that are unfinished or that were never started. I have thought about taking some classes, starting a business, finding ME again...and I have actually been incredibly busy lately too...but I am also incredibly scatter-brained...and I think it's because I am not under a deadline, needing to be 20 places at once. I can actually sit for a second, breathe, not have to rush off if I reeeeeallly don't want to. This should be a good thing, but it doesn't feel good.
A (nice) cousin of mine just pointed out to me that I must be feeling like "what the...?" now...because my sole purpose for the last 3+ years has suddenly been removed from my life, that I must be looking around thinking "what was all THAT for, and what now?"
Yes, that is so true. It's as if my "purpose" is gone. And yes, I know that's not right and that I still have much to do...I have multiple "purpose's" still here, but this, I dunno...I guess you could call it "freedom"...it feels so wrong!
Anyway, my birthday was Feb. 15th. I'm a grand 37! Feel like 87, but that's another story.
Yesterday was Papa's birthday. We came home from picking up the dollies from school and all the power had been turned off...and the office door had been closed all the way. That doesn't sound strange but it is because there is no reason for a power outage, and the office door is NEVER closed by anyone here...not to mention no one had been home. I will just assume it was him. Another hello?
Today I was sitting and reading for a few minutes, watching some workmen outside setting up our new Shed (which we are painting purple!), and the alarm clock in my daughter's room went on. She's 6, and doesn't use an alarm, and it's never been set anyway.
Someone is trying to say something, but I don't know who or what.
But...hello, whoever you are!

Responsibility of the Media.

2009-02-02T18:48:00.000-08:00

I've had it in the back of my mind for a really long time to write about this...the responsibility, or irresponsibility, as it may be, of the media related to promoting what Lewy Body Dementia, Alzheimer's, or any other dementia-related illnesses are really like in real-life.
Some people are incredibly uneducated, naive or just plain stupid (hello, read my last post!) when it comes to life in general, let alone when it comes to what they believe on TV, or movies. Too many people completely believe what they see on TV, and it really irks me when something false is reported over and over again. Then we have movies...and, one would think that people would take them with a grain of salt...realizing that they're total (or mostly) fantasy...and that people would question what was reality or fake and educate themselves on what was true.
But if that happened, I guess I wouldn't be writing this, now would I?

When it comes to the portrayals I've seen about dementia...wow, total disappointment. That's not to say that the movies themselves are bad, not at all. But the actual portrayal and factual information they show is really pathetic, and leads far too many people to believe that these diseases are just about being forgetful or needing a little help here and there...or that the person basically spontaneously dies after their diagnosis...which is probably part of the reason why, when families are actually faced with a disease like this, they freak out and dump their loved one off at a Nursing Home, never to be visited again. No one is ready for the YEARS that you will really be battling this, because no one tells you anything helpful until you ARE faced with it...and by then you are probably already sleep deprived or pulling your hair out, wondering what kind of mental case your loved one has turned into. This disease sucks your very will to live some days, and if you've had some fantasy that Dad will gleefully just stroll along and just need some reminders after being diagnosed with Dementia, because that's what "The Notebook" showed you, then you're in for a real shock. When bodily fluids, yelling, hitting, diapers, feeding issues, not sleeping, and all the fun stuff that REALLY happens starts up and you thought Dad would just be "pleasantly confused", then what? And who really tells us what's really going to happen? Not Doctors most of the time. And if all we know about these diseases are character portrayals on the big screen, there needs to be some changes. BIG TIME. Someone needs to be a little more responsible when they have the ability to affect literally millions of people.

Take 'The Notebook' as a perfect example. This was a great book, and really great movie. One of my all-time favorites, actually...as far as the love story is told. The characters were likable almost to a fault, and you couldn't help but catapult yourself into the scenes yourself...I just love it. I've easily watched that movie a dozen times and I cry every single time. BUT...just the fact that Ally (in her demented state) is always picture-perfect and coiffed is a total let-down. I don't know about you, but where I live in California, the residents do NOT look like that, and as you may have read, my Dad was a resident in many facilities. Not even the people on the independent-living areas look that good, let alone the ones with dementia. And the place she lives in that story? Forget about it. My Dad lived in some pretty nice places, hotel-like even, but the one she was at, dear god...can IIII move there? It's totally awesome! And it's not until the very end, the day she dies, that her hair was a bit ruffled and she didn't have lipstick on. Yeah, THAT'S real!

I've also seen 'Away From Her'. Another "good movie", but again...the woman portraying the Alzheimer's patient has very mild symptoms at best and she's gorgeous at all times. The facility she lives in is like a summer camp for people who are a little forgetful. A total crock. Good movie, good acting...crap for facts.

And then there's 'The Savages'. I should just stop there.
I was SO excited when I saw that this movie was being made. But because I couldn't get out to the movies when it was out (Lewy was living with us, and it was only released in limited theaters here anyway), I had to wait, but I bought it the very day it was released on DVD. Seeing that it was about a "younger" set of siblings who are suddenly thrust into taking care of their Dad with Dementia, I thought, YES, THIS IS IT...I will find solace and answers and something, ANYTHING!, to help me get through this Lewy Body nightmare. I thought it would be something I could relate to, some humor, some...something!
I was so disappointed that I even posted a review on the New York Times site about the movie.
If you haven't seen it, it basically shows two totally emotionally stunted and dysFUNctional siblings that find out their Dad has dementia and they are forced back into each others lives. The part about the demented Dad is sooooooo shallow...his first real symptom is that he decides to scrawl on the bathroom wall with his own feces, and his kids are called. They find him a facility, which wasn't that difficult, and then he dies almost immediately.
A far cry from what really happens.
Decent acting, good directing, and it had its moments that were funny or touching, but the saddest and most meaningful part of the movie was about the dog.

And, ya know, maybe these directors aren't trying to make a factual movie about dementia, which is fine...but if they're going to use this illness anywhere in their storyline, they could AT LEAST make it somewhat real, something more like what any one of us is going through at any minute of our days.
I've tried to find other movies about dementia, and there is a short list. The other ones I've found are:
"Aurora Borealis" (2006)
"A Song For Martin" (2001)
"Iris: A Memoir if Iris Murdoch" (2001)
"Firefly Dreams" (2001)
"Age Old Friends" (1989)

I'd like to hear from anyone who has seen these...I want to find them and watch them myself too. And what does anyone think about the 3 that I did see? What are your thoughts about how Dementia is portrayed? Are there any other movies/shows anyone knows about? Let me know!

WOW. More "Family Love"

2009-01-31T18:41:00.000-08:00

When even this Super Cool B.S.-ing Jesus thinks you should start making alternative plans and stocking up on sunscreen, you may have a problem.

Ranting shall begin in 5, 4, 3, 2....
Word is that the relatives in New Mexico had their own service for MY Dad. They said they "sent him off the right way"...because we didn't. They are saying that they think we didn't call them because we feel guilty about taking all the money.
All of WHAT money? WTF? No, really, WTF???????
I am not about to mince words here...not anymore...I am not going to try to be nice or not say what should've been said a long time ago...my Dad wanted nothing to do with these people. My Dad was tolerant of them and visited with them when he had to. My Dad was afraid of his own shadow, and them. He would NEVER have told them what he REALLY thought. They were his sister's kids, and he loved his sister.
Here are some facts to sum this situation up.
When Nany died, My Dad and his sister split Nany's money IN HALF.
Exactly IN HALF.
One cousin even went with us to witness the transaction so we didn't rip THEM off.
As if.
We are now seeing who the thieves REALLY are.
There WAS other money that came (and went with Dad's care) when IIIIIIIIIIII sold Nany's house 11 1/2 months after her passing...and Dad's sister had already passed by then, so there was NOTHING TO GIVE OR SPLIT WITH ANYONE. That money was used for my father's CARE.
Anyone happen to know how much care facilities cost? How much ER visits cost? Meds for Dementia? Well, yes, if you have a loved one with this disease, you do. You know exactly what I'm talking about. At the end, his care had to be paid for by Medi-Cal because he didn't have enough of this BELOVED money to cover much more of his expenses, AND Burial, AND more ER visits, AND etc., etc., etc. Everything was being turned over to the County and VA, but yes, my brother and I DID use some of that money for his burial before he had the payee program take over his Social Security check. Had we not done that, his final wishes to be buried in New Mexico would not have happened. We would've had to cremate him against his wishes and keep him here somewhere. And YES, we DID use some of that money to pay for our travel expenses to NM for his burial...otherwise neither of us would have been able to go at all. As if THAT needs justification!
So if my Dad's sister's GROWN CHILDREN's (all older than me!) gripe is that they think that they should have ALSO gotten even one dime of the money from the sale of Nany's house, after their mother had passed, when she was purposely not even named on it for THE VERY REASON I AM HAVING TO WRITE ABOUT THIS NOW, they are sick in the head. We gave away $200,000 that was NOT ours to give, and that wasn't enough?
The only CHILD LEFT OF PEARL McDONALD (Nany) WAS ROY FRIE.
Let me write that AGAIN.
The ONLY CHILD LEFT OF PEARL McDONALD WAS ROY FRIE.
The only person named as a beneficiary, for OBVIOUS REASONS TO ALL RIGHT NOW, was Roy Frie.
Are there ANY QUESTIONS left? There shouldn't be. But I remember at least one of these cousins telling me that if one of Nany's kids had passed, that all the money should be split 11 ways...8 kids on their side and 3 on ours. Uh, NO. That's not what the Will said.
Section 8 of the Will reads:
"Should any person not specifically named as a beneficiary in this Will claim all or any part of my estate, then I give, devise and bequeath to such person, whether they be related to me by blood or marriage or not, the sum of $1.00"
Hmmm. Yet they got $200,000 because we thought it was the right thing to do.
Totally against their wishes and the Will.
Section 9 reads:
"If any devisee, legatee or beneficiary under this Will shall contest it or any of its parts or provisions, any share or interest given to that person shall be revoked and shall augment proportionately the share of such beneficiaries as shall not have joined in or participated in said contest."
Do you know what that means?
But we didn't TAKE BACK that money, did we? We didn't follow the Will to the "T" because we thought we were doing the right thing by going against it. But going against it only fed these vultures enough to want more of what wasn't theirs.
WE, meaning myself, my brother or sister, were not named in the Will. It was not left TO US. It was left to ROY FRIE.
NOT me. NOT the 10 other grandchildren and dozens of great grandchildren.
Roy Frie.
Am I stuttering? Should I write in some inbred language for people with pickled brains?
R-O-Y.
F-R-I-E.
Maybe I need to write this again to be extra-clear for my brain-dead, LYING cousins...the ones who in reality, ended up with more 'fun' money than my Dad did, despite their lies to the contrary.
When Papa died...Papa...remember him?...the one who WORKED HIS WHOLE LIFE TO EARN AND SAVE THE MONEY IN QUESTION...when he died, it went to his wife, Pearl (Nany? Ever met her?). Papa had forbid us to allow anything to happen to NANY's money. He FORBID US to allow anyone but my Dad to get anywhere near whatever money she had left, or their house. It had already been discussed that when Nany passed, that NO ONE but US or our Dad be allowed in that house until all legal matters were settled. (But that's not what happened, is it? IS IT?) On his death bed, Papa was still clear enough to ask if we remembered what we were supposed to do. On his death bed, when all the "family" came around crying and acting like they gave a crap, Papa was furious. All the "family" that had been stealing from them every chance they got, who were so furiously jealous over the fact that Nany and Papa "were so stingy" with their money all these years...this "family", all milling around, all emotional...Papa did not buy ONE word or tear, just so you know. He said several times that he couldn't believe all the liars were there crying for him when they never came around unless they wanted something when he was alive and well. Papa referred to the whole area there as "Sin City" because of, well, really, do I need to go into that again?
Then...when Nany passed, she had EXPLICIT wishes about where that money would go. She even put my Dad's name as a joint tenant on her house because she knew that putting her daughter's name on it meant that her daughter's kids would fight for it. Sad, huh? But they're fighting about it NOW and it is a done deal. It's over, people.
OVER!
How much clearer can a person BE with their final wishes?
Just because you don't LIKE their wishes, well, too bad.
I didn't exactly like them myself because we (me, my brother and Dad) felt that my Aunt should get something, and we went against Nany & Papa's wishes and gave our Aunt $200,000. WE DID THAT. US, the one's who are now being pointed at like WE made off with a bunch of money. US, the one's that were instructed to NOT give ANY of that money away...we gave away two hundred thousand dollars and look at what has happened anyway.
WHAT a mistake.
Clearly, Papa and Nany were right all along. We should have just been hard asses and given her nothing because her surviving children are acting like we did just that anyway....JUST like Nany, Papa, my Mom and Dad said would happen. My whole life I thought Nany and Papa were being too paranoid, that they were being a little cold.
Nope. 100% right. Couldn't have been more right.
I am so sorry that they are not here so I can admit that to their faces.
I hope they know.
And let me make THIS clear.
Papa and Nany loved Shirley. Yes, Nany was a pain in the ass, and she wasn't always nice to her daughter, but I think that they were too much alike and butted heads at every corner. That, and the fact that Shirley still had a grudge against Nany for putting all the men Nany had in her life before her kids. That was wrong of Nany, absolutely, but it was history. It was never going to be right between them and that's just life. I have no doubt that Nany now knows just what a pain she could be. But...it doesn't change the fact that Nany and Papa KNEW Shirley. They knew that she would give her last dime to her kids, as she had been doing her whole life. She ran herself into the ground digging most of them out of all the holes they got themselves into...and Papa and Nany absolutely forbid her to allow her kids to get THEIR money. And that is their right. When she got mad at the accusation, that she may allow her children to get their money instead of her, legal forms were filed to protect THEIR money, and my Dad.
Nany and Papa knew that WE would handle it properly and be fair and look out for our Dad.
If that seems selfish to only trust us, oh well. If that's "favoring us", fucking GET OVER IT! It was their money to do with as THEY WISHED.
That was THEIR RIGHT.
THEIR final wishes.
WE never did anything to make our Grandparents distrust us. Even on our worst days, what stupid things we ever did in our lives PALED in comparison to what these people do on a daily basis.
OBVIOUSLY.
Except for not wanting to run into any of these idiots for our Dad's service, I hadn't really even thought about them or what they did with their mother's (gifted) share of this money at all. I really didn't care. It didn't affect me, and it was done. They obviously weren't the family they made themselves out to be, and I don't invite that kind of drama into my life. "Family" is made up of all kinds of people...but only people who have your best interest at heart. They clearly do not, have never, and will never.
They SHOULD be ashamed of themselves, but I know they're not. People who lie will continue to do so. And I shouldn't care because nothing they do or say will change anything now.
But now that these cousins are making such a stink over this...to the point of LYING and then disrespecting our father's wishes...what I'd like to know about this money situation is this: In Jan. 2007 we gave Shirley, their mother, $200,000. She told me herself that she gave each of her 8 kids $5000. That leaves $160,000. I've heard that Shirley bought a few things for a few people, but that she probably didn't spend that much. Afterall, she never really had any money and probably didn't know what to do with it except give it away. Shirley told me personally that she had no intention of using that $200,000 to pay bills...that her bills would die with her. She passed in October of that year (2007)...and it's gone already? From what I'm hearing, there is no money left, or never "was any"...like we never gave her that money at all. We also heard about some "benefit" thrown in our Aunt's honor...like, they raised money to cover expenses for her since she didn't have any? Big Fat LIAR alert!
Funny how these relatives are saying all of these things...like we ran off with "the money" and that's why we didn't call them about our Dad dying.
No, it had nothing to do with the fact that my Dad's final wishes did NOT include THEM.
No, it had nothing to do with the fact that they would have made it all about them and that it would have been a disgrace...that OUR father's final wishes would have been a mockery and a total joke.

So to sum this up...someone pocketed about $100,000 and are lying about it never existing; AND even though their mother had already passed away, they wanted the money from the sale of Nany's house as well even though it was only in our Dad's name...they would WILLINGLY take money from their "beloved Uncle"...who had Dementia, who had enormous bills to pay for his care...money that was NOT theirs to begin with...?; AND they are saying they we didn't call them about our Dad passing away because WE feel guilty about running off with "the money"...even though THEY are the only one's who ended up with any large amount of money...(although apparently depending on who you ask, they're saying we never gave their Mom that money?); OH, aaaaaaand that they gave our Dad, who wanted nothing to do with them, who couldn't believe everything they were willing to do over the years to get drugs, money or whatever they could get their hands on...THEY gave my Dad the send-off he deserved...?
Did I miss anything?
Papa, my god, SIN CITY, indeed...! You weren't kidding. They have done EXACTLY what you said they'd do. They stole, lied, got everything that you worked for and are now lying about never getting anything. After everything...all the stolen checks, money, jewelery, medications, getting all your furniture...$200,000...they're saying "we" got most of everything. Nothing would ever be enough to them...nothing...just like you said. You nailed it. My Mom was right, Nany was right, my Dad was right. We went against what you all wanted and look what it got us...nothing, exactly like you said. EXACTLY. I am so sorry we didn't believe you.
I don't know that I can ever forgive myself for not seeing this. Unbelievable.

I guess lying is contagious. Once you start, you can't stop, and it consumes your whole life.
I hope Jesus really DOES "forgive", you fake Christian cousins, 'cause otherwise me thinks that a few people better start getting the sunscreen and ice chest ready....

Daddy said hello today!

2009-01-30T17:12:00.000-08:00

So before I start, I'll just say this...I have had some encounters in my life that some would say were weird...there are far too many to list because these things sometimes happen daily and this type of thing has happened throughout my entire life so I'm used to it...but just as an example, if you're wondering, it would be something like when Papa passed away (they had just removed his body from the house that day) and I was at the sink doing dishes. Papa, clear as day, said, "Lainie", and I turned around to where the voice came from and there was no one there. I even searched the house and everyone was outside. Also regarding Papa...after he'd passed, I helped Nany go through his things and he'd had a little train set my sister had given him that Nany said I should bring home for my son, who was 3 at the time and loved trains. The first night we had it set up at home, it turned itself on 3 times. The second day it did it again. I took the batteries out. That second night it did it twice (with no batteries). The second time, which was at around 3 am, I came out to the living room where we had it set up, and said, "Papa, I know you are trying to say hello, and I hear you, but you can't keep waking me up like this", and it never happened again.
In general, there are just ALWAYS lots of "unexplainable" things that happen around me, and things that I "just know" with no proof, or weirdo dreams that show things that come true. I've even had random dreams about people I haven't seen since elementary school and when I google/try to find them, they've passed away, so it's just a lot of things that have become normal to me, but are not so funny to others.
I've also noticed that when I spend a lot of time with people, this "thing" seems to rub off on them a bit...like recently when everything was happening with Daddy and my brother and I were spending lots of time together, things happened when he was around, which I think is funny. One time we were all in my living room talking about family stuff, Nany in particular, and there was a vase of red roses near us...and ALL the petals fell off one of the roses...just flat fell off. Nany was a huge fan of these roses, so we laughed and assumed it was her...either saying hi or sending a message to STOP talking about her.
So anyway...today, hubby and I were at Hollywood Video getting some rentals for the weekend...yes, party animals, we are in indeed! We're paying at the counter and the girl ringing us up, who we see pretty much every time, asks us if it's under "our names", or Roy. We both looked at each other like we didn't hear her right. We have NEVER been asked this before. We've been going to the same Hollywood Video for nearly 4 years. When we first moved here, our phone number was under whomever's name had our number before us, but that stopped after we rented there a couple of times. And when my Dad lived here, I have NO knowledge of him getting ANY movies at Hollywood Video...I drove him everywhere, and he did not have a card there...he couldn't, because he not only didn't have a license or credit card to sign up for one, but he only drove for a short period of time during his residence in this city...not to mention that he didn't even know how to use his DVD player! AND he "suddenly" had an account under OUR phone number? I just smiled and laughed. Even hubby, who has seen more than his share of "creepy stuff" since he's been with me, said that it must've been my Dad saying hi.
It was nice. It's the first thing I've heard from my Dad...unlike many other relatives who are having a field day with TV's, radios, and lightbulbs. I hope to get more little hellos in the future from him...Hi Daddy!

Real-live people.

2009-01-28T17:12:00.000-08:00

Just as I hit "Publish" on my last post, the doorbell rang and it was the UPS guy delivering us some flowers...in sympathy for my Dad passing away. They are from my Mom's sister and family who live in Sacramento. See! There ARE people out there who know how to be nice! (I'm telling this to myself...)
And it should be mentioned that the family that sent it have had some seriously tough times themselves lately...my Aunt Dody (my Mom's sister) JUST got out of the hospital a few days ago...and she found the time and even THOUGHT about sending US flowers? Beyond thoughtful and nice.
Not that I in any way expect that everyone need to send flowers...not at all...but I just want to say this....
SEE, You JERKS in NM...see how REAL people/family behave? Take a LESSON!

Validation.

2009-01-28T16:02:00.000-08:00

It's always nice to get validation, even when you know you did the right thing.
I talked to "Aunt Willie" today...she is Papa's Aunt Willie who lives in Arkansas, who has been such a great support through all of these family death's and nonsense.
I called her and read her my cousin's letter.
She was furious.
Willie is still mad at us for giving Aunt Shirley the $200,000 when Nany died...but we, and our Dad, felt that we needed to do that, even though we all knew Shirley wouldn't enjoy any of it and that it would go to someone else anyway.
Well Willie is really mad now, and understandably so. Yes, she pointed out how she was right...that giving Shirley that money did her no good as predicted, and that our Dad could have benefited from it...but now, her hateful family had the NERVE to send that disgusting letter to me...?
But she and her family back there were betting I'd get a phone call or something. Funny how some people are SO predictable!
I told Willie that I honestly think that "someone" has lied back there in NM big time. My impression from Leana's letter is that she thinks they got nothing...which is ridiculous either way considering that her family got every single thing in Nany's house...but from her letter, she acts like we didn't split that money, and we sure as hell did. Now, if she IS aware that we split the money and is acting this way, well then she can kiss my butt. If they thought they'd get my Dad's half as well, and considering the hell we went through with legal mumbo jumbo and taxes to soften the blow of doing so, they have officially lost their last brain cell. That money was in my Dad's name...so you don't just "gift" someone $200,000 without a complete headache...believe me, I know, because I was the one who got the fun of this, the phone calls, the faxes, etc., to make sure my Dad didn't get screwed for being nice to his sister. "The Man", or Uncle Sam, does NOT like it when people get money for free. To be honest, I could actually pretty easily put the Tax Man on my cousins trail for that money if I REALLY wanted to be as big of a B**** as they're acting like I am. I still have the bank info and the day that check was printed. There are papers stating who is my Aunt's Power of Attorney, and there would be a paper trail for that check being cashed and to what account.
Hmmmm.
Something to think about if I get another letter or phone call.
So...Willie reminded me that Papa had absolutely forbid us to give that money to anyone, that it ALL belonged to my Dad. And she was just beside herself about Leana's comment about our Dad being left out of "everything". Willie knows the truth, as we do, and people saying such nonsense, is just, well...NONSENSE! She also reminded me how this (the letter, their behavior...) is just what "people like them do". She repainted the day for me, the day that Papa died, when two of my cousins were at the kitchen counter pocketing all of Papa's drugs since they "were already paid for and no one was gonna use them now anyway". Nice, huh? His body wasn't even cold yet and they were trying to benefit from his death.
Again, Klassy.
And though I know that I said everything I needed to say in my response letter to Leana's jibberish (I tried to attach it here but it didn't come through), and I know we did everything FAIRLY...even going so far as ignoring Papa and Nany's wishes to help Aunt Shirley...it was nice to talk to Willie and be reminded...actually, to sort of be yelled at a little to slap some sense back into me. Not that I was doubting any of that OR my really harsh (but true) response to her unbelievable rudeness, but I tend to feel far too bad for people when I really shouldn't.
Fantasy for the evening: I was adopted.

Today...

2009-01-26T18:08:00.000-08:00

It is 3 weeks since Daddy kicked Lewy to the curb.

And it's Mommy's birthday.

My Horoscope this morning said...

2009-01-25T11:41:00.000-08:00

"Secure your bunker and make sure it is fully stocked with heavy artillery because there is bound to be a battle, dear Aquarius. Trust that you need to be fully prepared in order to enter the fight today, because you do. There are some battles that you actually like-the ones that get things rolling and that produce results. It will soon become clear which type this is."
Hmmmm.
Lewy...are you out there somewhere...?

And the Award goes to...

2009-01-24T06:59:00.000-08:00

It's okay, admit it, the relatives I've brought up, you thought I was exaggerating. It's alright, I understand.
Just to show what Grade A people they've been, and to show how much respect they had for my Dad...here is the letter I received yesterday (exactly as she typed it):

Hey! Laine,
How are things your way? Everything is good down in the valley.
Well I have a few things to say: First of all I am so sorry about your dad. He was a very awesome man. I enjoyed him while he was down here. That breaks my heart how you and your family in California treated all of us down here like we were dirt or something. My Grandma Shirley new how you guys would handle everything especially when it came down to her and Uncle Roy's share from Nanny's Inheritance. You know what she didn't care one bit about the money or all of the things that were really supposed to go to her. After all Nanny always favored Uncle Roy and you guys anyway. My grandma went up to heaven with peace in her heart and she was happy. She loved you guys even under the circumstances with you guys. That sure was nice of you to write about us in the paper, about Nanny's house. We all wanted to help, but apparently you had it under control right? That's okay. In the long run we know that we will pass on with peace in our hearts, and YOU? Will you pass with peace in your heart? Yes, This part of the family forgives you and your siblings. We would at least appreciated a phone call about Uncle Roy. He was so excited to spend time up there with his children, but from what I understand he was kept from everything, including my grandma passing away. He wasn't that awful either. He was fine down here. Well I pray for all of you guys. And we do forgive you. May God be with you.
(then hand signed) Leana

I can't remember now if I wrote about this here, but what she means about "writing about them in the paper" was when (over a year ago) I had sent a thank you to the paper, acknowledging the second realtor we had while selling Nany's House. I wanted to publicly thank this woman and let her community know what an above-the-bar job she did for us...because she was put through absolute hell while trying to help us sell that stupid house...oh, you have no idea! I had written how she was so kind and patient when everything that could go wrong did go wrong, which included the house being looted and flooded. I didn't name names. That's all I wrote. Clearly they did what I mentioned or they wouldn't be offended by it. I didn't think THEY would see it in the paper, I didn't even think about it...because, oh yeah, I wasn't writing it for their benefit!
This is just one of many cousins who have spent their entire life screwing up, complaining how they're stuck in a two-bit town with no prospects. Drugs, drinking, and a new 'baby daddy' at every turn. Funny how that stuff just gets "forced" on people, isn't it? How they have no choice, because that's ALL there is to do there?
Well, this, after dealing with Lewy, is a small drop in the bucket. My response has already been mailed out, nicely folded and placed in the middle of a much-needed dictionary.
Yes, that's rude of me.
But I will not tolerate such nonsense from people who don't even get their facts straight before writing some chicken scratch based on what their pickled brain tells them is true.
And they're mad that we didn't let them know about my Dad...that's the real purpose here? They didn't even have contact with my Dad, and he didn't WANT contact with most of them because of how they continually drove their mother/grandmother in the ground and stole money, drugs, and everything they could get their hands on from Nany's house.
And saying that we "kept my Dad from everything including her Grandma (his sister)'s death"...?
MY GOD.
So apparently we were expected to fly our incontinent, and by then fully demented father from CA to New Mexico for his sister's funeral...a funeral he wouldn't even have fully understood? When I told my Dad his sister had passed away, he cried for a few minutes then seemed to forget what he was even crying about. The next day he tried to call his sister because he'd already forgotten she had died.
Really. Abso-freaking-lute GENIUSES!!!!!!!!
Yes, THANK YOU SO VERY MUCH for forgiving us...oh god-fearing and all-knowing cousins of mine...because we didn't torment our very ill father with his sister's death. We are so very sorry that we didn't do things YOUR ass-backward and completely ridiculous way...thankyouthankyouthankyou for forgiving us.
And, I'm sure I should clarify before someone reads this and gets offended AGAIN...but not ALL of them did this...(I think?)...and not ALL of them were this way...(I hope?)...but unfortunately in this type of situation...had we invited one person to the funeral...yes, OUR DAD'S funeral that WE barely even made it to...then who knows who would've shown up. Not to mention that any of the phone numbers we previously had aren't even valid anymore...they get their phones disconnected, changed or move constantly. I tried calling a few of them after my Dad's sister died to find out where and when to send flowers, and the number's were disconnected. So I called the Church she went to and THEY gave the information. HOW we would've gotten in touch with anyone who would've had anything respectful to say would have been impossible anyway. WE however, have had the same number and address for years, and they knew where WE were...but we didn't hear a peep out of one of them. Family love, respect, and forgiveness? If they loved my Dad so much, why didn't they contact him?
Clearly from the fact that this cousin (who is the granddaughter of my Dad's sister, by the way) was disgusting enough to send such a note the second she heard my Dad died, just imagine what would've happened had they known we were THERE.
Jerry Springer, anyone?
Klassy with a big ol' capital K.

But this just goes along with the territory with these types of people...and I know that many of you have dealt with this kind of nonsense with family/friends...especially when your loved one has a disease like Dementia. They aren't around, they disappear, and basically show how they really don't care about you, your loved one, or what you're all going through. But the second someone dies...AFTER it's too late to do the right thing...AFTER all the time has passed when they coulda, shoulda, woulda done all the things they NEVER did...that's when they show up or write you a note like the one I got.
They didn't have the decency to take part in my Dad's LIFE, but his death was important to them? Why...so that all those phone calls they DIDN'T make had a real REASON for not happening now?

Typical.

And don't you adore how she opened with that 1st grade "how are you I am fine" type of nonsense, then accused, forgave, and ultimately "blessed us" with her god-fearin' words of Family LUV, all in one ignoramus package? Gotta love it. It would've been better written in CRAYON.

Lewy's Last (Cackling) laugh.

2009-01-18T07:29:00.000-08:00

This picture captures what we felt during this whole trip...defeat...or, "Screw It, I'm Going HOME!!!!"
But Lewy's last stab at us was just NOT going to work!

January 14th, 8am. We missed our first flight. By two minutes. Oh, no...the plane hadn't left yet, it still had about 28 minutes until take off. But there's some new thing since I flew last that states you have to have gone through security 30 minutes prior to take off or too bad for you. It didn't matter that we told them we were flying in for our Dad's funeral...that we were going to be the only two people there. In a "series of unfortunate events", we just didn't make it there in time. Car windows frosted up, traffic, whatever. It just was not going to happen. No one's ever bent the rules for me before...so why, even though passengers were still getting organized on the plane, even though they weren't done loading luggage yet, would they forgive us two minutes now?
We were rescheduled for a flight quite a few hours later. Went to eat, called the car rental place and the hotel we were supposed to stay at to let them know when we "should" arrive...and got back with plenty of time to board this time. Okay.
6-ish pm. We get to our first destination where we are supposed to have a short layover. We go eat.
When we're on the tram that spans this enormous airport, I see the time and it doesn't make sense to me...we're TWO hours ahead (it say's 8-ish pm)? Huh? We ask someone on the tram and they confirm that time is correct. We RUN to the desk. Our flight left a half hour ago. When we finally figure out how the hell we could've missed another flight...it turns out that NO, we did not have any time to go do ANYTHING. We thought we were only one hour ahead. We were two. So that ultimately meant that we actually only had about 6 minutes to get from our first flight to the flight we just missed. Not an HOUR and 6 minutes like we thought. So really, we may not have made it either way. Forget about it.
We were stuck overnight. NO luggage. Which means no clothes, toothbrushes, etc.
We're just laughing at this point.
We get rescheduled again for the next flight to Roswell, which isn't until the next morning at 9:45am...and it will get us there with barely enough time to get to the cemetery for the service at 11am (the flight is 1 hour 35 minutes, minus the 1 hour time difference). We will have to go straight to Dad's service with the clothes we still have on. Forget the clothes I so carefully picked out to be presentable for saying goodbye to my Dad one last time. Forget the warm jacket I made sure I had in case the weather took a turn, which it did. Prepare to freeze.
Seriously, just laugh, that's what we did.
We called to get a hotel for that night. They gave us toothpaste and all those necessities...at least we had that! The girl gave us the room card/key and told us what floor we're on. It doesn't register as we say thank you and were walking away toward the elevator.
I stop.
I say, "What floor are we on? What did she say? What room number.........?" We are on the 13th floor in room 1367. 13...and then 6+7=13. 1313 on the 13th floor.
We are just dying from laughter.
I thought there wasn't supposed to be a 13th floor!
We get on the elevator and this woman boards also, asks us how we're doing tonight and we are laughing, telling her we missed two flights, blah blah blah...and now we're on the 13th floor in room 1367. She starts laughing, which we expected...but then she says, "Well, it happened to the right people!".
Crickets.
Then we just start busting out laughing again.
We get to the room, RE-call the car rental place and cancel the hotel room we should have been in by then in Roswell (I still don't know if they are going to take mercy on us on not charge us).
Miraculously, nothing happened to us in that hotel room.
We got up the next morning and showered. Stupidly I washed my hair and didn't think about the fact that I did not have a BRUSH! So I weeded through my mangled, wet mop and tried to dry it. We head to the elevator, go down and grab a quick breakfast snack at the front, and get on the shuttle to the airport.
The shuttle driver had said something about making sure we check our gate before settling in any section...and we found out why. We were supposed to be at B24, so we check in at B24. They say go to B12. At B12, they say go to B1. We run what seems like miles to B1, and they say go to B9. Over the loud speaker there is a recording that repeats something to the extent of, "Please make sure you check your gate, as your gate status may change at any moment". No kidding?! The girl at B9 says we might as well wait until a few minutes until our flight is due to leave to check our gate. Hmmm. Me thinks that is how people keep missing their flights!
But...we had PLENTY of time to sit and wait for our flight this time. So we sat, read, drank too much coffee, and laughed at the people and the things they do and say. We kept checking our gate, which changed two or three more times. A few pretty comical characters and dazed stewardesses later, we got to Roswell in one piece. Right off the bat, brother tells the car rental guy that we are in a hurry to get to our Dad's funeral and that was the fastest I have ever been helped in my life. Thank you, Roswell Hertz!
We got to the cemetery just as the funeral director was telling one of the Vet's for the service that we should be hopefully be there soon. (I had called him that morning to tell him we were arriving that morning instead of the day before...he seemed a little concerned that we wouldn't make it). We had about 10-15 minutes to spare for our Dad's service when we arrived. We were wearing jeans, sneakers, and sports-type sweaters...yes, and the same underwear from the day before.
There were about 8 chairs set out for people to sit...of course we're it...but the director asks if we want to wait to see if anyone else shows up after they saw the obituary. I tried to calmly say, "Um, but we didn't give you the obituary yet..." to which he said, "Oh, that's right, you're right."
I panicked a bit when he said that. If any obit. had already run, that would mean that the relatives that live there would've seen it and possibly shown up. Dear god.
For those who may not have read my entire blog and don't understand the "why" behind the decision to exclude certain people from this occasion, the summary is this: inviting one, or the few people who have been supportive over the years would've meant they'd all know...and from the drama that ensued after Papa, then Nany's, passing, we chose to avoid the dramarama. This was OUR Dad. Ours. And Daddy was not that happy about how things went down when Papa and Nany passed either, not that he would've ever said anything to anyone but us, but it just wasn't right. It was downright ridiculous, actually. And we really didn't need anyone showing up high, drunk, or out of some ridiculous obligation to prove they are someone they are NOT, and we honestly didn't need sympathy from people who in the past demanded furniture and personal belongings (or money) in a situation they should have stayed away from. If any relatives see this and get mad...then they are the people who did these things. Those who were caring and supportive would understand and move on. Those who were caring and supportive don't even need this explanation because they know what really happened. Those who were caring and understanding and knew our Dad in the slightest know EXACTLY what I'm talking about. Enough said.
So the director told us that some woman had called the day before to say they were sending a check to help pay for funeral expenses...he couldn't remember who it was. I didn't know if it was some sort of credit from the nursing home, or what...I guess we'd find out later when we signed the paperwork before our flight home.
When we were standing next to our Dad's casket, but facing our Nany and Papa's headstone...we saw the date that had been engraved for Nany's date of death was WRONG. The engraving had been done after we'd gone back to CA in Jan. 2007. The director said that someone in the family had to have signed off that this was the correct date...he seemed a little disappointed that it had been done wrong too...but oh well, what can you do? It's literally engraved in stone, so that's it.
Anyway, the service was short and sweet. We had the local Vet's do their thing, and it was really quite nice. One read all about our Dad's military service, awards he'd received...some things that I didn't even know. They saluted, presented me with the flag, and marched off. Well, in one vet's case, he actually got stuck in a clump of grass in his wheelchair and was mouthing obscenities to himself, but the whole sentiment was really great. I actually rather enjoyed seeing the little things that didn't go "perfectly"...because, hello? Then it wouldn't be tailor made for US...not to mention that anything that would distract me from crying was completely needed.
We left, drove by Nany's old house, drove by the house Dad grew up in (it had been leveled...just a concrete slab remained), and ate some lunch. Brother's phone showed that he'd missed a call from our area code (no message though) so he called it back. It was Robin from CEPS. Remember her? Well she was calling to say that they were going to send the remaining portion of our Dad's Social Security check to the mortuary to help pay for the funeral expenses. She was sickenly sweet and said that "they were so sorry to hear about our father's passing". Right. But we'll gladly accept that money to deduct from the thousands we were about to sign a check for.
We went to a few of the UFO places and got this gnarley alien "skull" that my husband saw on our last trip there and wished we had for Halloween ever since. Then we went to the mortuary to sign paperwork and write out a check, and we were able to deduct the money CEPS was going to be sending.
We had stopped to get some flowers to put in the vases on Nany and Papa's headstone, and some for our Dad. A few relatives from out of state (nice ones that we like) had sent two arrangements for us...one for our Dad and one for the middle vase on Nany and Papa's stone. It looked really nice when we were done.
We headed to the airport to GO HOME!
Everything there went very smoothly...well, except for the fact that I tried to order an iced, decaf mocha from the cafe there and the woman made me a hot, caffeinated drink twice. When I asked for "iced", she came at me with a scooper full of ice, saying, "you wan' ize?".
Yes, I wan' ize. The thing was so hot that there was no way it'd be cool enough to drink by the time our flight left. Brother got me a cup of ice, which made it undrinkable, so I threw it out.
The plane from Roswell is one of those really small puddle-jumpers, so not a lot of people to deal with or nonsense. There was a young mother and her little girl seated in front of us for the flight. The little girl had to be around 2, but she didn't have much of a vocabulary...so she kept making these noises that sounded like funny things that we would repeat to each other, and we played with her as she peeked over the top of the chairs and made her funny sounds. She was much more fascinated by my brother than me, so everything she said was aimed at him. One thing she kept saying sounded JUST like she was saying "you're gay"...well, more like, "Yagay!", and my brother would say, "No I'm not!" and she'd laugh. When she made noises to me, it sounded more like, "Yeahya!"...I don't know if you've ever seen Dave Chappelle's imitation of Lil' Jon, but she said it just like him. Too funny. Another nice distraction.
I came across this online...and I think it pretty well sums up this whole trip.
www.youtube.com/watch?v=iEZo84KNxKs

We got to our final destination at about 10pm that night. Getting "home" was another hour and a half...and I pulled into my driveway at 2 minutes past midnight...but we made it.
And Daddy is at peace now.
Lewy might've gotten in a seriously long last cackling laugh, but that's his FINAL laugh...for us anyway. I know that Lewy lives on in others, and that some people's fight with him has just begun, and I honestly feel sick at that thought. And I can only hope that no one else in our family is introduced to Lewy in this lifetime...and/or that a cure is found. I dunno. There is no right thing to say here except that I wish no one else had to go through this.
It has been a long, tear-filled road of frustration, anger; sadness; guilt; sleepless nights; broken dishes & furniture; flooded flooring; Depends undergarments; lost shoes, keys, wallets, minds, etc; "stolen" everything (both real and imaginary); horrible facilities; horrible caregivers; wonderful facilities and caregivers; Financial worries from hell; imaginary people who can meld into any shape they wish; a-hole Social Workers; losing friends; finding friends in the oddest places; finding out who is behind you and who never was; really expensive, useless legal paperwork; watching someone slowly forget you; watching someone forget themselves; seeing yourself age 10 years in 3; and all-but-giving-up until you realize you are the only one who hasn't...a never-ending list in a spiraling journey never to be forgotten (unless Lewy someday gets to us too).
Tomorrow: anything is possible.

Tomorrow Morning...

2009-01-13T18:37:00.000-08:00

...we leave for New Mexico to bury Daddy.
I'm stressed for that simple fact, and because I do not want to run into any of the far too numerous relatives that live there.
This burial signifies the true end to Daddy's path with Lewy. It brings relief and sadness.
I don't know what else to say about it other than that.

When Everything is a Reminder.

2009-01-11T16:47:00.000-08:00

Ya ever notice that certain things carry reminders wherever you go? I know that obviously I am completely saturated with my Dad's passing right now, especially considering we are just days away from flying to Roswell to bury him...but this darn song keeps making me teary eyed, and it's everywhere on the radio right now. I am not exactly a fan of the band who sings it (Linkin Park), but the lyrics somehow hit home for me...from the standpoint of someone with Lewy Body, and from the caregiver's standpoint as well. I have no idea if I'm allowed to reprint these, but until told otherwise, here goes (I've shortened it a bit and taken out the repeating choruses)...and I hope they're all correct:

"Leave Out All The Rest" by Linkin Park

I dreamed I was missing, you were so scared
But no one would listen, 'cause no one else cared.
After my dreaming, I woke with this fear
What am I leaving, when I'm done here?
So if you're asking me, I want you to know
When my time comes, forget the wrong that I've done
Help me leave behind some reasons to be missed
Don't resent me, and when you're feeling empty
Keep me in your memory, leave out all the rest
Leave out all the rest
Don't be afraid
I've taken my beating, I've shared what I've made
I'm strong on the surface, not all the way through
I've never been perfect, but neither have you
So if you're asking me, I want you to know
When my time comes, forget the wrong that I've done
Help me leave behind some reasons to be missed
Don't resent me, and when you're feeling empty
Keep me in your memory, leave out all the rest
Leave out all the rest
Forgetting all the hurt inside you've learned to hide so well
Pretending someone else can come and save me from myself
I can't be who you are
I can't be who you are

And Life goes on.

2009-01-09T16:39:00.000-08:00

Okay, so before I launch into the frantic goings on of these past few days since Daddy's passing, I want to fill in the gaps of what happened before...when he was still at that damned VA facility and I was searching for another place for him.
So...I think I left off with me veto-ing Villa. I ended up touring a few places, including a place called Country Villa in Modesto (see, I told you a lot of places have the name Villa in them!) and one called Kiernan Village in Salida. Between a zillion phone calls with that lady Theresa from Patient's rights and many other places, I had "other" people communicate with that a-hole Ackerman and the now jerky Robin. I refused to return any of their calls.
There were many disagreements and miscommunications before I finally said that either Kiernan Village or Country Villa would be okay. Kiernan Village is only an "assisted living" facility, which I really didn't think could handle him, but the caregivers seemed to understand what my Dad's needs were, it had a wanderguard system, and it was close by. Country Villa is a Nursing/Rehab Center, and I thought it may be better suited right off the bat, but because he didn't have Medi-Cal and had the CEPS payee program, they weren't even sure if they could take him.
Longer story short, and days of phone calls, Kiernan Village came through. But we'd have to go pick Daddy up at the VA, because he suddenly "wasn't eligible" for transport like before (even though we'd have to pay for that transport anyway). What that was about, I don't know, but after talking to the director of Kiernan Village, we thought it was better that someone he knows picked him up to lessen his anxiety. I was a bit nervous about going to the VA since at this point, with everything said and done with Whackerman...I can honestly say I didn't completely trust myself to do or say the right (or calm) thing if she felt inclined to brow-beat us one more time with her hormonal personality disorder.
I had already brought all my Dad's belongings to Kiernan Village the day before we picked him up...I wanted everything "just so" when he got there. December 4, 2008, my brother and I went to the Menlo Park VA Geriatric Psych Ward to get Daddy and bring him to Kiernan Village.
We got there, were buzzed in, and waited in a hallway near a sitting room while the Nurse tried to find Daddy's Nurse and his things. I caught a quick glimpse of a woman in the office with Whackerman's name on it...I was confused, thought it had to someone else, and kept walking. I watched all the patients in that sitting area, all of them mentally affected in some way, and COMPLETELY overlooked that my own father was sitting right there. As we waited, Whackerman walked by us. I'm not sure she knew who we were because she looked at my brother and said "helloooo" in her trashy accent...that's how I knew it was her. I didn't look at her until she passed us. Wow. I've got to say that for someone with SUCH an ego, I expected her to be some sort of goddess. But no. She looked more like an Oompa Loompa with mousy brown, extremely thinning hair and a serious thyroid problem. We couldn't help but laugh. Such a miserable, horrible, liar of a troll. Now I see why.
The first Nurse finally came back, bringing our Dad near us. He didn't seem to realize who we were, but when he got close enough to me, he started crying. He looked so incredibly pitiful, his hair was long, his eyebrows were unkempt, and apparently they said they'd had a "clepto" in their midst, because Daddy didn't have any of his own clothes on. Daddy was walking okay with our assistance, and he was talking fairly clear and in full sentences. Brother went to use the bathroom before we left and Daddy asked who that guy was. He wasn't sure if it was my husband. When I told him it was his son, he started crying. Sigh.
So we headed back, stopped for some lunch, got Daddy a haircut, and brought him to Kiernan Village. I had gone through the huge bag of meds we were given upon his discharge...and there were dozens. DOZENS! I couldn't believe all the nonsense they had him on. Drugs to calm him down, wake him up, to combat the side effects from other drugs...unbelievable. I had Daddy off ALL his meds before he went there, and now they had him on 3 times the drugs I had weaned him off of.
He seemed pretty content with Kiernan Village, and we assured him we were close by and would be over or talk to him daily. We showed him around, got him settled, and left.
Over the next few days he suddenly spiraled. The Director, Ray, let us know that Daddy was refusing to eat or get out of bed. Because I know Daddy does that sometimes, even once a week, I told Ray to wait a day to see if he perked up the following day. He didn't.
On Decemeber 11th, 2008, Daddy was taken to the ER, they did tests, and found that he was in complete renal (kidney) failure. The Doctors said they can only assume it was due to all the drugs they (the VA) had him on, namely the cholesterol med Simvastatin...apparently kidney failure isn't an uncommon side effect? My God. I had fought with Daddy's Doctors for years to get him off Simvastatin, among others...he did NOT need them, his levels were always well below "healthy" levels...but no, they argued that the benefits outweighed the risks. How can that be, especially with his diagnosis? His life was limited...and even IF his cholesterol or blood sugar or any number of other things spiked...what is a better way to go...by sudden heart attack/stroke, or by lingering aimlessly like he inevitably did? I know a few people in my support group whose husbands have things like aortic aneurisms...and under normal circumstances, they would have surgery. But with dementia, they had to come to the unfortunate decision that going by aneurism is far kinder, so they've left it alone.
Such a horrible reality.
So, day by day in the hospital, Daddy got a tiny bit worse. More than half the time he wouldn't open his eyes, and he couldn't really move, but he was still eating...and still getting extremely agitated with the Nurses. He yelled and screamed at them when they were trying to clean or move him. Lewy was definitely in full effect because some of the things he said were regarding things and people at least 30 years ago. Or he wanted to "get out of the helicopter now", or go get his wallet out of the glove compartment. He even asked to get the car keys of a cousin's car...a cousin that has been in a semi-vegetative state for about 15 years.
They did dialysis 3 times before we had to make the decision to not do anymore...since if dialysis was his only way of staying alive, it would fall into the "being artificially sustained" category, and Daddy did not want that. So the dialysis stopped, and the hospital searched for a suitable Nursing/Rehab facility to discharge him to...he would be on "comfort measures" which is basically Hospice. We knew the end was near.
They said we needed to go sign him up for Medi-Cal to make sure we could get him placed quicker...that a place called Country Villa could take him if he had Medi-Cal (the same one I toured). So my brother, my two kids and I headed to the Medi-Cal office one day after visiting Daddy in the hospital. Over 3 hours of sitting in the Medi-Cal office later, we were told Daddy was approved for emergency long-term care Medi-Cal. That place was, to say the least, scary. It would be a whole other entry just explaining the hilarity that ensued at the Medi-Cal office, but anyone who has ever been to one can imagine, I'm sure.
Word came that Country Villa accepted Daddy, and on December 18th, he was moved there. There was a little bit of nonsense involved as far as paperwork being signed...the Director was not that sensitive in understanding or caring about the reasons we didn't want to sign his paperwork. I already knew from past experience that if you do not sign as anything other than his "agent", you WILL be sent the bills and held accountable for absolutely everything. Not knowing what I had already gone through in the past 3+ years, maybe she just thought I was some bratty kid, I don't know...and I know she thought that about my brother because she didn't mince words sharing that opinion. I had to assure her that we had no malicious reasons, and that my brother not signing was because he didn't want to end up like I've been the last 3 years. Who would, I mean, it was hell.
What annoyed me was that when my Dad had been transferred from the hospital to Country Villa, the hospital failed to share important information...such as regarding his Medi-Cal status and a few medical issues. I got it all resolved, but it's just so annoying when people don't do their job and you have to do it for them.
So Daddy was at Country Villa, and day by day he was slipping away a little more. Everytime I went there, I had the intention of telling him it was okay to go, that we understand, and that there were lots of people waiting for him whenever he was ready. But anytime I tried to get that out, I crumbled. I did ask him if he saw my Mom yet, Papa, or his sister...and he just fluttered his eyes, no real response.
I brought him one of his favorite ice creams everyday, and he'd eat about half of it. He slowly stopped being able to swallow food and they even added thickener to his water.
Maybe this sounds silly, but it was the day he refused to swallow his ice cream that the reality of Daddy dying hit me, and I knew it was just a matter of days, if that.
Over the course of the next couple of days, I went there sometimes twice. My brother and I would go, and sometimes I would head back over, and just sit with him and read for an hour or two. His O2 saturation levels had dropped to 75% so they'd put him on oxygen. He wasn't responding to any stimuli. He was getting so thin and frail, and due to the fact that he wasn't even drinking any fluids at this point, his tongue was like a hide of leather.
One evening I was there, I tried putting a few drops of water on his tongue and I thought I would have a heart attack...he started choking on it. Two drops of water caused him to gasp. I never tried that again.
Though I had already made phone calls and sent a check reserving a burial plot, we still had to go to the local Mortuary, pick out a casket and do the paperwork to cement all of his final wishes.
I had almost forgotten that he would need clothes, and that shopping trip just killed me. I was in a complete stupor worrying about what size, what color I should get, and whether he needed underwear? For a good day after that shopping excursion, I was a drained, mindless mess.
The afternoon of January 4th, we had made the very difficult decision to take him off the oxygen. We were getting mixed information about whether this was prolonging his misery. This was the same day that, when I returned on my own later, I got the words out. I told him how sorry I was that he had to go through all of this, and that anytime he was ready to go, we understood, and that we all loved him very much. I told him I got him a place right next to Nany and Papa, and that Shirley (his sister) and Mommy (my Mom) were waiting for him. I thought I would die saying these things. I gasped and shook and used half a roll of toilet paper in the bathroom blowng my nose trying to get these words out, but I did it. Sigh...
The next morning a Nurse called and said she wanted to know why we did that...taking him off the oxygen...that she didn't agree with our decision...that the oxygen was only keeping him comfortable...and that if he showed any sign of struggling to breathe and we insisted on keeping him off the oxygen, we'd have to meet with Nurses, the Social Worker, and an ETHICS COMMITTEE.
No, really, I don't feel bad enough already, make me feel worse. Thanks.
We were already on our way to see Daddy anyway, so we told them to re-instate the oxygen when we got there.
His eyes were glazed over and he was just not there anymore.
My brother and I stayed quite a while, then went to eat and I took him home. I was going to go home myself and that's when this nauseating brick hit my stomach and I went back to the Nursing home. Looking back, I think that maybe by the time I got there the second time, he was really already gone, but that his body still had to go through the process of completely shutting down. Of course I'll never really know for sure.
I am still not done making phone calls, even though realistically we don't have that much family left to call.
We have all our arrangements made for our flights, and Daddy was flown to Roswell yesterday. I went to the Mortuary early and "approved" how they groomed him. Hubby came with me, thank god, because it was like seeing Daddy die all over again. The person who prepared him really did do a good job, but it just wasn't my Dad. It didn't look like him. I truly realized, looking at him then, that it wasn't him. You'd think by now that I've seen enough death to come to a concrete conclusion already...but it wasn't until I saw my Dad there like that...that I think it cemented my belief that we go on from here...and that was just the body he had used during this particular lifetime. There is just no way that was my Dad. No way. It wasn't.
He had already vacated that body. What he really was had just left behind its shell, like when a snake shed's its skin.
Nothing now will ever convince me otherwise.
Oh, and before I forget...
I have obviously not been shy about naming names and ratting out facilities in this area that should be BOARDED UP...but I need to publicly state that Country Villa in Modesto was GREAT. Two Nurse's in particular...Sabrina and Nicole...they did a wonderful job taking care of my Dad. And just overall, I must say that I had a really positive experience with Country Villa and ALL their employees, and wish that more places were like them. They were compassionate and sensitive to what we were going through, and my Dad's needs were promptly and carefully taken into consideration...even when we weren't even sure what to do. I am extremely grateful that we had a good experience to walk us out of this nightmare.

The Blur Before We Depart.

2009-01-05T23:08:00.000-08:00

Clearly, I cannot keep up with a blog. Life keeps happening and blogging does not.
Much has happened since my last post...much that I hope to get down in writing at some point, but right now it's down to this:
Daddy passed away this afternoon.
January 5, 2009 just before 4 pm.
My brother and I had already visited him today, but when I dropped my brother off, I just, I dunno, had this dread fill my gut. I went back to the Nursing Home, and Daddy already looked different. He wasn't moving, but something was happening. He felt cold. I checked his feet...they said that "mottling" would occur when he "was close"...and there it was. I kept running my hand over his forehead and cheeks. I told him I was so sorry he had to go through all of this, and that I loved him.
Then he was suddenly burning up, sweating even.
I was standing beside him, my eyes watching as his breathing slowed at a steady pace, then ceased, my fingers feeling his pulse drifting away one beat less each time. And his temperature was dropping rapidly.
In those last beats of his heart...he seemed at peace. I have to hope that is true. He did not struggle in those final moments. He simply slipped away.
As I realized that this was his final goodbye, this was really happening, this was it...that Lewy had finally won...I watched as the oddest thing occured: I could not completely focus on him...there was this...this "static" around him, a blur to the edges of his entire being. About an inch of "space" surrounded him...a fuzzy layer of distortion. My heart raced.
Is this what people are talking about when they say they've seen a soul leave a person's body? I have to say that I am holding on to that theory...that I witnessed my Daddy's soul lift out of his tired, confused, withered body...and that he was on to somewhere with no pain, no hallucinations, no arms and legs and brain that betrayed him at every move...on to a place that Lewy cannot enter.
Roy C. Frie was born in Dexter, New Mexico on October 29, 1934. He enlisted as a Marine during the Korean Conflict, and moved to California shortly thereafter. He has been a CA resident ever since. His main line of work was heating and air until his retirement.
He enjoyed reminiscing about days gone by, his days in New Mexico, when times were simpler and a whole day at the cinema cost about a dollar.
In the last few years he was preceeded in death by his beloved stepfather, his mother, wife, and only sister. And, actually, at least a dozen other family members that I honestly couldn't organize names to if I tried.
Services will be private and he will be laid to rest in Roswell, New Mexico alongside numerous members of his family.
He will be missed, and we will try to remember him as he was before Lewy took over, before the funny parts about him were stretched and twisted into what Lewy made him into. He is survived by his two daughters, his son, and 3 grandchildren.
I will hold on to that remarkable sight I saw this afternoon for as long as my mind allows me to...that fuzzy, bright aura that lifted itself from a body that could no longer hold a soul on a mission...the blur before we depart this world.
I love you Daddy. Be at peace now.
(And can you please tell Nany [or whomever it is] to stop messing with all my electricity!?)

{{{{{{{{{{one last hug}}}}}}}}}}

Dead Ringer.

2008-11-14T15:45:00.000-08:00

Phone Ringer, that is. No one really called me back today...of ALL the calls I made yesterday, the only calls I got were from the Modesto VA Social Worker and of course, Laurie Ackerman...and I didn't even want HER to call me. Eric Andrews, the Modesto VA Social Worker called Ackerman for more info about why I was calling him in regard to my Dad. Laurie then left me a message saying that Mr. Andrews said that I am wanting to work with her on getting my Dad discharged, and she was oh-so pleased. Is she psychotic? Or is it because the bridge betweenthe check they wanted leads to me...you know, the money I don't have "control over" anymore...and this has stalled him being released.
Good.
Because they need to find him an appropriate place FIRST. Idiots.
Hubby and I went to Las Palmas this morning to check it out.
The place itself is okay. Yes, it's older, but it's pretty well kept up...as far as these places go. That was good. There is a foul musty stench, which was kinda gross, but I know that sometimes there are smells involved with these places. Yuck. But...pick your battles, right?...so I held in my disdain.
What got us was the fact that there are 3 or 4 areas where there are dozens of people (residents) smoking, and there is NO avoiding it. You absolutely MUST walk through the smoke from 10 smokers to get through one gate...then through the smoke of about at 6 more people to get to where my Dad would be...the area with the wanderguard system. I should have just left then, but Linda was quite nice and I didn't want to offend her. We went in. Again, the place is older so it had its issues. But then two very large dogs came right up to us. No. No. NO.
My Dad absolutely despises dogs. It was a dog that kept me from moving him to Season's in Modesto 2 years ago because it had a bed right outside the door my Dad would use...and the dog had marked its territory very, very well.
THESE dogs as Las Palmas were big. They seemed friendly enough...but I know my Dad. That would not fly and I wouldn't even try it. I have no doubt that some situation would come up where one or both of the dogs would annoy him and he would be too rough and push or hit one...and who knows what that could cause.
Now, if it was ONLY the dog situation, I may try to work something out with these people. But the fact that there is no entrance you can walk through without causing an allergic/asthmatic reaction? No. My Dad has emphysema as it is, and I was so completely saturated with the smoke that I showered and changed my clothes when I got home. Yes, it was that bad. We're not talking some random annoying smoke we couldn't avoid from some inconsiderate SINGLE smoker. I'm talking smoke clouds like that in a bar full of people puffing away. Isn't there a law that smokers have to be 20 feet from entrances? Not that 20 feet makes much of a difference...but these people are sitting literally in the way of the gates...and you have to pass through two crowds of cancer-inducing smoke just to get in. I already had cancer, thank you very much. Kill yourself somewhere else please!
So, Laurie's message also said that obviously my Dad is not being discharged now...with the implied undercurrent that it's my fault. Too bad.
And everytime they try to send him to another place that isn't qualified to care for him I will do the same thing. Weird how this all worked considering they were trying to say my Dad makes his OWN decisions, huh? These people are ALWAYS trying to scare you into doing things you do not have to do....threatening you with lies, trying to use some big word they assume you don't know. But I know a few things after being the caregiver of a person with Dementia, and I am jaded as hell. And more than a handful of times I have CORRECTED someone's use of a word they thought sounded good at the time. So go bully someone ELSE!
In the meantime...I will be searching on my own for a suitable place.
Please someone send me a miracle.
And by the way...what is it with these places filled with people whose room and board and everything is being paid by county or state funds...and yet they have money for CIGARETTES? The state bitches and moans about budgets and blah, blah, blah...but these places are packed with people on 100% aid/assistance...which means they are being GIVEN the money to smoke. Most of these people can't even shop or leave the residence alone, so that means an aid/caregiver is actually BUYING and BRINGING them the cigarettes. Most of these people have medical issues and/or mental health issues but they are given cigarettes. I do not get it. Shouldn't the focus be on getting these people healthier, to promote well-being, to teach them what toxins in their bodies can do? Yes, what a great idea to give a man with down syndrome an unlimited supply of cigarettes! What a fabulous idea to give the guy with one lung, who can't get out of his wheelchair, free cigarettes courtesy of their county aid check. Even better to give the guy with Alzheimer's packs upon packs of cigarettes considering he will probably light himself on fire or forget what he's doing.
Freakin' awesome.
Genuises everywhere, it's great.

Evil, Evil people.

2008-11-13T18:02:00.000-08:00

Pretty much all week I've been on the phone. Enough time has not passed for me forget what this was like before, so it all seems to blend together into one long phone call with the same idiotic person.
I had been talking to this woman, Robin, at CEPS, the people who will thankfully be taking charge of handling my Dad's bills now...they are "the payee" now. Basically, my Dad's Social Security check will be deposited into their account and they will pay my Dad's bills from that. Did I already say THANK GOD? But back to Robin. She seemed very well-meaning and nice. She seemed to understand that though I am not in charge of *everything* in my Dad's life now, I am still extremely concerned about his welfare and want him in a place that is equipped to handle him and treat him well. She seemed to get that I felt like a failure for not being able to do it myself.
I was clearly delusional.
Robin informs me today that Villa, the place Whackerman wants to send my Dad, is ready to take him.
She says that I need to bring her a check for transporting my Dad from the VA in Menlo Park to Villa...oh, and about $600-700 on top of that for the cost of the rest of the month at Villa....TODAY. I didn't really have that time today, and I was more than a little concerned that suddenly this place is going to take him when they told me they couldn't handle someone like my Dad, but I also did not have time today to deal with this or even the thought of it. I told her I would make it there in the next couple of hours.
On my way there, I got that feeling. I decided to go to this Villa place to check it out and ask when I could bring my Dad's things (I have all his clothes, etc.)...and I also wanted to talk to that Lourdie woman again to see just why and what changed their minds into taking him.
The street scared me. Hellhole. Ghetto. Random tweaky, dirty people walking the street, a street paved badly and with no sidewalks...just dirt and dumpsters in front yards. It was right off the freeway.
I pull into the crushed granite driveway and walk up to the metal screen that doesn't shut. The door was barely on its hinges. I walk in. I see no one. I walk around inside unnoticed. There is no alarm, no wander guard system, no locked doors. I go in farther and a man walks in from a patio where I see a twitching woman smoking. The man is shaky and literally grunts at me. I turn around and walk the length of the building, still unnoticed. I see another man walking in, rubbing his hand furiously together, not unlike what the character does in "Slingblade". The place smells like stale smoke, urine, and musty...something. The floor is all jacked-up and uneven...JUST perfect for someone with balance and falling issues. Great. I keep wandering until I am beyond annoyed. I never found anyone that "worked there".
Instead of following my route to CEPS to deliver the check, I went home. I felt utterly sick and irate. Hubby informs me that Robin had called. Oh, and there's a message from Laurie Ackerman, saying that my Dad is being placed at Villa because they were "willing to give it a try"....and that she hopes that I am in contact with Robin because she DESPERATELY needs the funds to transport my Dad and for care and board. She's trying to sound ALLLLL concerned and as if she's someone who gives a rats ass about anyone but herself. I'm NOT buying it. I know her better than that.
I am SO pissed.
I call Robin and immediately say I'm sorry that I am probably going to be seen as difficult...but that Villa is completely inappropriate for my Dad because of the unlocked doors, etc....uh, maybe the fact that he could escape, walk down the street and end up on the FREEWAY?
Nice Robin turns into not-so-nice Robin.
She acts like I am personally attacking her, as if me saying this place is not right for my Dad is telling her to fuck off. She doesn't want to deal with me anymore. She gives me the number of someone with "Patients Rights" and I call them. From what Theresa with Patients Rights says, she seems to understand what I am trying to get at: that I am the only one actually looking out for what my Dad really needs and am the only one being realistic with what and who he is and what that means for someone caring for him. I am beyond done fooling myself into thinking my Dad can be peaceful and cooperative. I know that he has his moments, but for the most part, he needs, needs, needs, and he is not nice about it. He screams, he demands, he expects someone at his side within milliseconds of his call for help, or ELSE. Even Dr. Fenn told me last week that my Dad yells and screams curse words and racial slurs even when unprovoked...so WHY people like Laurie Ackerman are trying to sugar coat the truth is beyond me. It creates an unsafe environment for my Dad AND the people caring for him. Hell, even when you ARE informed about what he may do, it's not easy to deal with.
Anyway, Theresa refers me to a few more people...Marilyn Ricketts with the County Conservator whom I've already spoken to before, a woman who runs a place called Las Palmas (they have a wanderguard system), the Social Worker at the Modesto VA, and a nurse who helps handle people like my Dad...she is also through the Modesto VA.
I left messages with everyone, but did get a hold of Linda at Las Palmas. She was very candid with me about what I should do and whether her place would be okay for my Dad. I will go look at it tomorrow.
I ran some errands and came back to see yet another message from Laurie Ackerman, Social Worker from HELL. To sum up what she said, hoo boy...and don't forget to add the cheap-sounding, condescending-toned, east coast (Yenta) accent while you imagine this:
"I got a call from Robin who said that you had a conversation that did not go well, that you are not happy with where your Dad is being placed. Well (with a Hmmmmph! in her voice), your Dad makes his OWN decisions and has decided ON HIS OWN to go to Villa. YOU are not in charge of his money anymore and HE decides where he goes and he has chosen to go to Villa."
Go ahead and laugh. Hubby and I did. Ackerman has more mood swings than a man taking hormone replacement to become a woman. 'Nuff said.
But...Hmmmm. Let's actually analyze her two messages...
My Dad, who is highly demented, who doesn't know how to wipe his own ass anymore because he doesn't realize what an ass IS, doesn't remember his family half the time and thinks that pictures on the wall talk to him...HE makes his OWN decisions? And, uh, IIII am not in charge if his money anymore...? Does she mean his Social Security check that I couldn't hand over FAST ENOUGH? That money? Or is the only account in his name...that whole $2000 they've been BEGGING for access to? THAT MONEY? What the "F" are these people ON?????
Seems that the now not-so-nice-Robin had some pretty interesting and not-so-TRUE things to say to Laurie Whackerman then.
What is it with these people and LYING? Is that a job prerequisite: big fat liar?
And it also seems that Burning Bridges 101 is another prerequisite. They burned this bridge, that is for sure.
Tomorrow, when they inevitably call me asking WHY I haven't brought the check to cover the cost of transportation and for the room and board for the end of the month...hmmm...well, if as Laurie said...that I am "not in charge of my dad's money anymore"...then, huh...I think that writing a check from an account with MY money in it is a really, really bad idea. They can suck it. Laurie Ackerman went from begging for money, to telling me I am not "in charge of the money". Seems that Laurie Ackerman is also dipping into the patients meds over at the geriatric psych ward. And if she isn't, she should.
Tomorrow I will start my own search for a suitable place for my Dad. Again. And if what Whackerman said is true...that he "makes his own decisions"...then he will see that IIIII will find him a nicer place and will go there "on his own".
I am also going to find out who to send a complain to for this whackjob of a Social Worker.
How do people like this sleep at night knowing they are purposely putting someone like my Dad in harm's way? HOW?
Bastards, every one of them.
I spent the day fielding and making calls about my Dad when I am not supposed to be doing any of that anymore. I got ONE of my own errands done and nothing else. I missed my Alzheimer's group again...for the 4th week in a row...all because of the same crap with the same people.
Ha...Well, at least they're consistent.

Back from the Dead.

2008-11-07T18:15:00.000-08:00

I didn't realize I hadn't posted since September 22! It's been THAT long? Wow. Anyway, I have basically been sick this whole time. My "vacation sickness" turned into a full-blown flu/cold, bone numbing pain and nausea. Not having insurance right now, I hoped that this was just one of my weirdo thyroid-related flare ups or something related, but I got increasingly more lethargic and then got some awful infection, which I tend to get from time to time with my horrible immune system. Anyhooo...broke down my fears of the cost of a non-insured Dr. visit and went in. Thank god my Dr. office knows and likes me, because I got a fat discount and free anti-biotics from them. I am feeling soooo much better. And I started this new vitamin regime too, so I have no doubt that's helping.
Okay, so onto the latest Lewy news...if I can even catch up to what's happened...?
There wasn't a "ton" to report in October...the harrassment from the VA subsided, and the calls I did get I screened with our re-instated Privacy Manager with AT&T. How did civilized people get on without Privacy Manager? WHAT a Godsend.
I only got about 2 dozen calls (quite a cut-back) from random people about placing my Dad, bank account information, the Conservatorship process, and also questions about whether what that nut/liar Social Worker Laurie Ackerman was saying about us was true...? Oh, and what was she saying, you ask? Only that me and brother want nothing to do with our Dad, how NO ONE has been able to reach me for 3 months.
!!!!
Yeah, all those harrassing phone calls were in my head. My husband and kids saw me crying and screaming on the phone to imaginary people. All the calls I placed to my brother about yet another person calling to "not pass judgement on why I won't take responsibility for my Dad"...yep, I made it ALLLL up. Uh-huh.
So, today...
I get a call from a very nice woman from this place called CEPS. ONE thing the VA did do was contact this place that will be taking care of my Dad's money now...CEPS will be handling the payee part of my Dad's care from now on. She tells me he's being placed on Thursday close-by and tells me the name of the place...Villa...it sounds familiar...oh yeah, that's because it was one of the almost 40 places I got denied from!!! I didn't say anything to her at that time because I wanted to make sure...a lot of places have the word "Villa" in them...maybe I was mistaken...?
Nope.
Called Villa up and the woman, Lourdie (sp?), knew my name when I said I was calling to find out admitting information about my Dad.
Yeeeeeeaaaah....so apparently the already known liar and hood-rat Laurie Ackerman has decided to spread yet more lies. She told Villa that my Dad does NOT have dementia, that he is quite pleasant, and needs little assistance.
?????
Lourdie said that she plainly told Ms. Ackerman that they can't care for someone with anything other than very mild dementia...and hello? My Dad is the Dementia poster boy.
There is NO way I am allowing that scumbag Laurie to lie just to rid of my Dad and place him somewhere who is outwardly admitting they CANNOT care for someone with dementia.
I then called the "head" Psychiatrist, Dr. Fenn, who is now caring for my Dad himself (no Resident Doctors doing it for him). I asked him if they had changed my dad's diagnosis...and of course he responded as anyone should...that I was off my rocker. We ALL know my Dad has dementia.
So Dr. Fenn says that he doesn't want to get "involved" (in whatever is brewing between us and Ms. Whackerman)...but that he JUST can't see how there could be any lying in this situation because when my dad's records are sent over it will state "DEMENTIA" all over it. I told him what Whackerman told Villa about my dad not having dementia and all he could say was "I really just don't know what Ms. Ackerman is saying".
Then I left a message for Whackerman. I told her about my conversation with the Lourdie at Villa, reminded her how she had told me how she can "talk anyone into anything" and that now I know she does it with LIES...that I know she did plenty of lying about me and my brother already...that I hoped she could act with a little more professionalism and try to place my dad somewhere equipped to care for him. I closed with the fact that I know she already has my number, that she can call me back but I won't answer...and that I have nothing to say to her because she's a disgusting, despicable person.
Oh...and as I was typing that last paragraph...Whackerman just called and left a message saying that OF COURSE she told Villa my Dad has Lewy Body dementia and that whomever I spoke to is misinformed. She said that he has NOT been wandering while there and that he had improved quite a bit while in their care. She also said that if for some reason Villa did not work out, that my Dad would be sent right back to the VA and be right back in her care.
LIES!!!
Once they get him out of the VA, they are done with him. I know this for a fact. Why do these people have to lie?
Uh...hmmm....but she is right about one thing: Of course my Dad can't wander at the moment...they have him so drugged that he apparently can't walk AT ALL anymore on his own. Everytime I call him, a Nurse asks me "if I'm someone important" because it takes them a solid 5 minutes to lift him and lead him to the phone. They literally told me that if I wasn't someone "important", they would say he was asleep. Nice, huh?
BUT anyway...the second he is placed in a new facility, he will inevitably be taken off the Haldol since no Nursing Homes I know of approve of that drug...and then he will be back to wandering again.
These people are sacks of spew.
So, Whackerman said that unless IIIIII do something to change things, that she is planning on admitting him to Villa...but that I am MORE than welcome to come pick him up anytime.
This is all just sickening. Every single day I am sick that my dad is at that VA facility. They are obviously heartless bastards over there and all they are doing is keeping him drugged beyond belief. What have I done? He was supposed to go there to get his meds straight, get the conservatorship process going and get placed in a suitable facility. THAT was the plan I made with his Doctor. I was supposed to be free from the "responsibility" of making decisions and onto being able to visit him, care for him...but not kill myself and neglect my own health, children and husband in the process. Instead I've just traded all that for even more assholes to deal with and my Dad STILL isn't getting adequate care. I can't give him adequate care, no facility seems to be able to that either, and the VA is run by monkeys.
Where do I go from here?

Called Daddy yesterday.

2008-09-22T11:02:00.001-07:00

He was just as confused as ever. Guess that miracle cure didn't work. Idjits, all of them.
The Nurse that answered the phone call was really quite confused herself...she asked me 3 times if I was asking to talk to my Dad. The way she spoke sounded like she had a gag in her mouth, it was really strange. More and more I feel I get sufficient evidence to prove my theory that the doctors and Nurse's are nipping into the patients drugs.
Once my Dad finally got on the phone, which took quite some time, he was very tearful and thought he was in Los Angeles. He asked me where I was living now. He also said that the Doctor's been telling him that me and brother "are in big trouble". It's stuff like that that makes me wonder if I can believe anything, or even bits, of what my Dad thinks or says...because that last part I would wholly believe if there was no reason for me to question Daddy's words.
Anyway, not much of our conversation took place in reality, and much of it was spent with me repeating myself several times because he couldn't hear me, and then about 10 minutes was used with me trying to tell him mine and brother's phone numbers...he ended up flagging someone down to write it down for him. And they were NOT nice. At one point, Daddy put the phone down and started walking away to ask if one the Nurse's could write my number down for him and I immediately heard her YELL, "HEY! What do you think YOU'RE DOING????". There was no asking nicely...it was zero to screaming in half a second. She wasn't much nicer to me when she was taking down my number either.
Why do these people take these jobs, and how is it that they qualify to be hired or keep them? Is there no one there that sees or hears clearly that supervises?
These things never change. It's just disgusting.
I know first hand just how frustrating it is to care for someone with my Dad's mental status...but these people are supposed to be trained...they purposely sought out this job...and are being paid to do it...then they get to take breaks and get to go home...to get away from the craziness as it should be. They knew what they were applying for when they took the job.
Not a whole lot else to report. I am still making phone calls about funeral pre-arrangements, trying to find EXACTLY what Daddy would want, making sure everything is cemented...which is hard because asking him questions isn't very fruitful most days.
I still don't feel at ease despite the fact that I am clearly getting some respite from Lewy. I don't know if this is just how I am wired...to be a worrier...but I am just not okay with my Dad being where he is and how this all happened. Lately my only real rest (in my head) from this all is to try to pretend I "don't know"...which doesn't really work, but sometimes I get a stretch of time when I don't think about all of this and feel tears start to form. I guess that's something.
I am hoping that nothing happens before Thursday, that is my Alzheimer's group day. The reason I say that is because I feel that I compromise a good 15-20 minutes of every meeting because SO much is always going on. Of course they ask and want to know what is happening...and we are ALL learning from my experience with this stuff for sure...but I need a break from myself and this. Even if there is drama in the next 3 days, I am keeping quiet at the meeting, let someone else talk.
I just laughed out loud at that.
Is that even possible? Ha.

That "vacation"-sickness thing. And ranting.

2008-09-20T08:27:00.000-07:00

Have you ever noticed that you can work your butt off and somehow get through all of life's nonsense relatively unscathed...but the second you finally decide that you will take a break or an actual vacation...you get sick? I've read articles about this in the past...it has to do with finally "letting go" and relaxing...and your immune system, being overwrought, is struck with the reality of your exhaustion and you get the first little bug that comes along. I know many people who have complained of getting sick when they finally take a vacation. I am assuming that this is what is happening to me. Not that I am on any vacation...ha!...but now that I am not under seige 24/7 by Lewy and actually have had some peace to have the option of sitting down for 5 seconds...I feel that I am more exhausted and in that "being on the verge of getting sick" than ever before. I feel horrible. I am in that state of 'about to get the flu' every day. Yes, it could be my stupid thyroid nonsense, combined with the weather change, combined with life in general, combined with stress and those harrassing phone calls from the VA combined with, well, everything and the above...but this is ridiculous. I am more tired than ever, how is that possible?

In other news, the phone calls have not stopped. The VA has left message after message about "urgently" needing to talk to me. I ignored them all until a few days ago when that Resident jerk-off Zambrano was leaving a message...and he said something to the effect of "never speaking to me before"...he'd said something like that before and I thought I heard him wrong...but no...he was really saying that he had never spoken to me before. These people are nutty. I've talked to this loon at least 7 times, probably more.
I think when the meds go out to patients it goes something like this: "Okay, Mr. Smith, here's your haldol...soooooo...that's one for you and one for me...and here's your Xanax...that'd be one for you and two for me...".
They are wiggedy-whacked, plain and simple.
This is the majority of the reason why, way back in the stone ages when I was in college... that I dropped my Psych major. After far too many classes with crazy teachers who would bring in their "highly accredited" speakers who were clearly medicated (or needed to be)...I knew there was absolutely no way I could handle having to deal with colleagues who were crazier than the people they were supposed to be treating.
So while that snickers bar Zambrano was saying he'd never spoken to me before, I couldn't help it, I picked up the phone. We got in a heated discussion about how they were harrassing me and Dr. Snickerdoodle thought he'd use his overly animated ego to try to trick me into thinking he knew some big words that I might not know. What transpired was me saying, "Listen, honey" and talking him down to his actual 3 year old mentality. I do not play well with people who have narcisstic personality disorder...people who have themselves SO high on a pedestal...who think that because they attended a few 1/2 hour seminars and had the money to buy a 3000-page medical book (that they never even read)...that they are superior in any way. I know that people like this use their false, "book-smarts" intelligence on the majority of people and get what they want...they are condescending to someone who may not know all the terminology or legal jargon...and trick these unsuspecting people into doing things they don't have to do. This doesn't work with me. I happen to know a few big words myself.
Then there was the call from Ackerman the Social Worker...this time her message was calm and almost pleading, but in a, dare I say...friendly voice?...that she "really, really just needed to speak with someone 'knowledgable' about a few issues they desperately needed to take care of". I'm not buying it. She can be nice (now) and plead and try to stroke my ego all she wants...I'm not biting. All the things she said she absolutely couldn't do are now transpiring...such as how she said they could never get Daddy Medi-Cal...well now they are signing him up...or how they insisted my Dad would never get transferrred to any VA Nursing Homes because his medical state isn't "service related"...but now they are waiting for his bed at one.
Funny how things work out, isn't it?
What really steams me, and I spoke to my friends at the Alzheimer's group about this, is how people like this bully family members until they break...most people will cave under pressure and won't stand up for themselves. I did that to an extent...caving in...I kept on going and going with these issues with my Dad until I was living on fumes...and this is why 30% of caregivers of every age die BEFORE the people they are caring for. Stress and exhaustion are no laughing matter and it is NOT in your head and not something you can pray away or wish away or ignore. This stuff will kill you. And people like the Doctors/Nurses and Social Worker at the VA are the people who will drive you to insanity or death...and they will not bat an eye about it.
People like my Dad DESERVE assistance from the county and state. We shouldn't be being harrassed to the point of not answering our phones because the VA and state will not take responsibility for what they had a part in. I know far too many people who are getting free benefits, food stamps, Medi-Cal, Unemployment and other aid when they do NOT deserve it or are defrauding the system with lies to get it. My Mom and Dad lived on wages just above the state's poverty level my whole life. We had NO medical insurance, and my Dad had limited VA benefits that he had to fight tooth and nail for. We did not get free anything because we looked too white or had $10 dollars too much...but neighbors of ours who made more than my parents who were more ethnic looking got every form of assistance and also had plenty of money to get their nails done every week and carry Gucci bags. Things are still like that. I love it when I am waiting in line at the grocery store when the person in front of me is decked out in runway clothes, has a perfect french manicure, is carrying the latest Kate Spade bag, in high heels, layered with jewelery...and my ice cream is melting because of the 20 extra minutes it takes to scan those damn WIC certificates. Then I go out to the parking lot and see this woman loading her free groceries into her souped-up Denali.
I will not feel bad about expecting my Dad to get HALF of what that lady is clearly getting.
And I could fight for benefits/state assistance if I really wanted to. Though I "look" white, I am actually enough American Indian and Mexican to have gone to college for free. I could get lots of free stuff if I were so inclined to do so. But I am not the type of person who takes hand outs because I was born with a certain heritage. If I was, I would also try to cash in on this "restitution" crap that some people claim they are entitled to because their family members 100 years ago were slaves.
Hmmm, well so were mine. And less than 100 years ago.
My Mom's family were slaves on a farm...they even had to take the last name of the family they worked for. Then the American Indian parts of both sides of my family had their land taken from them. Does that mean I am entitled to restitution? Back pay? To open my own casino? Hardly.
But my Dad deserves to have the state finally pony-up and take care of him. When my Dad served in Korea, he just wanted to hurry up and go home. He didn't make a big deal about the fact that seeing people die haunted him and gave him nightmares. So, because he didn't complain and cry about his experience, his numerous mental ailments were deemed "non-service related" which is far from the truth...so while I am usually not the type of person who expects something for nothing...which isn't really the case here anyway...I think that the VA should do what they should have done years ago. And that is taking responsibility for what my Dad's service did to him. NO ONE gets through military service without harm. No one. And it's time that we all acknowledge that. We all owe our servicemen/women our respect and gratitude...at the very LEAST, they deserve to have life-long, EXCELLENT medical benefits, if not medical benefits for their entire family to boot. Taking my Dad to the VA as many times as I have, I have seen barely 20-year old BOYS with missing limbs trying to get medicine and given a hard time about it because their VA benefits don't cover it. And I've seen some of these young men with pregnant wives or small children...I've heard them talking and was horrified. Some of these BOYS...who went off to war and left families behind...are now back and will probably never work again due to their injuries (missing arms, legs, head injuries)...and they receive very little monetary compensation AND they don't make enough to carry medical insurance for their families BUT most of them are too white or own a car that is worth more than $2200, so they CANNOT get Medi-Cal or any other state funded assistance. That is so far beyond bullshit. Most of these guys are coming home with serious injuries and many are coming home with head injuries so severe that there is no room for them in VA hospitals...so they are sent to the Geriatric Psych units...because the injuries they sustained have made their mental states as bad as somone with a dementia or schizophrenia. And yet they do not deserve full and complete medical benefits for life?
My God.
If you kill someone on the street just for the hell of it, you would be sent to prison (maybe) where you would get 3 complete, nutritionally balanced meals per day AND free, state of the art medical care.
But if you serve your country or work for a living and pay into taxes that are filtered into state funded "aid" to people who "need" it...and someday YOU need some sort of assistance? HA! Good luck because the state is too busy fumbling the budget deficit for all the people already getting those benefits who are here illegally, or are okay with defrauding and lying to get it. I can honestly say I do not know ONE person who is receiving any kind or type of county/state/government aid that is doing it legally, or who is even a citizen here. And the people I've known who are getting their "free" (at the low, low cost of their physical and mental health and stress on their families) VA benefits are given such a hard time about it that most of them do not even bother going unless it is a dire necessity.
And so this is why I am not budging. I refuse. Realistically, my Dad's life will be over in the next couple of years if not much sooner. The VA and state is getting off pretty cheap if you ask me. It's long overdue that they compensate my Dad for what he did for them. For us.
Off my soapbox now.

Re-entering the real world.

2008-09-13T07:11:00.000-07:00

I have not posted because I have been attemtping to re-enter the real world, sans Lewy.
This, I now know, is impossible, but I tried it.
What really happened was...while I was trying to get back to doing "normal", healthy things, like playing with my kids and running errands without deadlines or fear of screaming Lewy looming over my sweating head...I kept getting tag-teamed by the VA. Oh my.
There were Doctors and many, many nurses calling me...even the Social Worker there was in on it. For example, last Friday I was called 7 times within an hour by 3 people. I assume they planned it that way...they are trying to break me down, play with my emotions, play on my overly stimulated sense of guilt...to get me to come pick up my Dad and bring him home.
It started off with Nurse Nancy...who called me on her personal cell to, I kid you not, tell me that my Dad was "all better now"....they had CURED him...he was "as right as rain" and "as clear as a bell". HER words.
She said, with my Dad standing right next to her, that he was "just so sad that IIIII refused to come pick him up because there is just NOTHING WRONG with him anymore...he's ready for US to take him home"!!!!!!!!!!! Can you BELIEVE THAT?
I told her that if, indeed, they had found a magic pill or cure...that we'd better inform the media right away since millions of people will want this CURE for dementia they apparently have. It was unfreakinbelievable, the things this woman said. I said it was pretty unbelievable that she felt it was appropriate to say things like this to my Dad, and in front of my Dad.
The resident Doctor Zambrano also tagged me...saying more or less the same thing...then the Social Worker, this Laurie Ackerman...who said the opposite, admitting that my Dad was NOT magically cured...but that she was "able to talk ANYONE into anything"...like what? Talking me into coming to pick my Dad up? My consistent "NO's" frustrated her to no end.
I held my ground with these people, but when I finally got a hold of brother, the stress of it hit me and I broke down crying. They HAD played on my feelings and guilt. They KNOW I'm the one who clearly has no common sense when it comes to my Dad...and oh did they try to use that in their favor. But my exhaustion has pounded some sense into me afterall...and I did NOT allow them to get anywhere with me.
Long story short, what happened on their end is that the usual Social Worker (Ackerman) was on vacation and the one filling in not only dropped the ball on filing the Conservatorship papers...but did not even ADMIT my Dad into the facility properly. So, according to their paperwork, they were keeping my Dad against his wishes and illegally.
THAT is not my problem.
They went from being astounded that little ol' me had been taking care of my Dad all this time, to not caring who took him off their hands ASAP.
I've seen the VA number a dozen times on my caller ID since, but I've been screening my calls and only answer when it's my Dad...who, needless to say, is nowhere near sounding "right as rain". He's just as paranoid and delusional as ever.
The Social Worker got a hold of my brother in an attempt to sway him...she left a message basically saying she wasn't getting anywhere with me and that I sounded "stressed".
Uh, really?
When I went to my Alzheimer's group and told them the latest, they couldn't believe it either. Every one of them said to ignore the VA's calls, and to NOT visit my Dad until he was placed somewhere else and made a ward of the state. They all said the same thing...that if me and my brother went to visit Dad this weekend as we planned, that these idiots could easily discharge my Dad and say they suddenly had no bed available...and god forbid if we took him out to lunch as we probably would have...that when we came back, he would have "magically" been disharged as well. I would not put that past these people. Not to mention that I'm sure we'd get cornered by all of them.
Some of my support group friends also said they might consider changing their phone number or consulting an attorney in this case...if for no other reason than to handle the abuse these people are dishing out to my Dad by telling him they are just waiting for US to take responsibilty and come pick him up. They're right, it is abuse. You just don't play with someone's head like that...especially someone who's mental function is not normal, it's cruel.
Yesterday the Resident Zambrano left another message...it said that Dr. Fenn, the "real" (chief) Doctor...wanted to talk to me RIGHT AWAY. Too bad. I've left SEVERAL messages for this Dr. Fenn and he has ignored them. But now that HE has something to say apparently and they are dying to get rid of my Dad, via MY car, he wants to talk to me. Nope. Not gonna happen. And what really boiled my blood was that I could totally tell that the phone call was made on speakerphone...so I can only assume that several of them were in the same office, all dying to hear what I had to say and planned on tag-teaming me yet again...but all on the same line this time. I mean, why bother with separate phone calls when there's SPEAKERPHONE? They could all yell at me and tell me again how they're "trying not to pass judgement on WHY I won't take RESPONSIBILITY" simultaneously that way!
Anyway, inbetween all this nonsense, I am trying to catch up on normal life...which has really equalled me falling asleep at 6pm and not waking up until the next morning. And I'm still tired.
I also finally got some thyroid test results back and they were far from normal, again. So, another change in my meds...but at least it gives me an explanation for why I have been feeling like a complete slug everyday.
Other than that...we celebrated my daughter's 6th birthday and that was great...it's the first low-key, non stressful occasion we've had in years. YEARS!!!!! It was nice just being able to concentrate on the task at hand...which was making sure my daughter had fun. Amazing how the obvious slips away when your priorities are so tangled up in everything but the actual task at hand.
Life.
Lewy.

Just the daily...

2008-09-01T17:30:00.001-07:00

We are in the midst of ripping out all the downstairs flooring that Lewy ruined. I couldn't have imagined just how messy this was gonna be...but it should be all over in a few days, right? Then we'll have new floors that haven't been stained with 5 different bodily fluids or flooded. Looking forward to it!
The "Resident" Doctor called yesterday...more nonsense about the Conservatorship...and that they don't want to do it. I basically repeated what I already told him...I can't take care of Daddy. He asked if we were abandoning him then...?
My gawd, please. I reminded him that I have devoted myself to making my Dad's life better (or trying anyway) for over 3 years...to the detriment of my own family and health in the process. Just because I am finally taking a step back and saying I need help...I am abandoning him now? He was trying to get names and numbers of "other" family members HE thinks should take care of him. I laughed and said good luck with that...and gave him no information.
Honey, if there were "other" help out there...dontcha think I'd have utilized that by now?
A nurse dialed my number for Daddy today. When I saw the VA number, I assumed it was more Conservator questions...but it was actually my Dad. For the first time in a really long time, I was really, reallllllly happy to hear his voice. Maybe that's awful to say...but I have been neck deep in Daddy for over 3 years. I have now had over one week of silence from Lewy's screaming and acting out...so I was able to actually enjoy talking to him...my Dad, not Lewy.
He sounded okay, actually...slurring his words a bit, but he was making some sense today...asking how we all were, how the kids were...but asked where I'd been and why I haven't visited "in months", though it had only been one week. I told him I was planning on visiting him next week once we got the kids back on their school schedules (they start back tomorrow).
All in all, he sounded good...at least, a lot better than recent months, and that's something...I'll take it.
Oh, and today is Nany's birthday. She's been gone a year and and 9 months. She would've been 93 today. I don't think Daddy remembered because he would've said something about it. I wasn't about to remind him. If there is a positive thing about this damn disease is that it's robbing him of the bad memories too.
Sigh...

Contradictions.

2008-08-28T14:01:00.000-07:00

Uh, yeah...so in a much earlier post, I wrote about how my Dad had been sent to the Geriatric Psych Ward over a year ago under the pretense that he'd be getting his meds straight, etc., then we'd bring him home...but what really happened was that they told me to walk away, that he was too far gone and that they were making him a ward of the state. I wrote how nothing had been even asked or explained, that they just proceeded without my knowledge and assumed we were abandoning him or that I was okay with that. At that time, I knew no more about Conservatorship than I do about the current budget "crisis" in California.
WELL...This time around...I do. I was called yesterday and asked about whether we'd spoken to anyone about Conservatorship and I said I had...and that I was not going to contest it like I did last time, since now I not only realize what it is, but have also thrown up my white flag in defeat of this disease or being able to care for my Dad.
Uh, yeah, no...they don't want to this time. They told me that IIIIIIIII needed to finance a Conservatorship...that "the family" needed to be the one that pursued this. Hmmm. If WE, meaning me, are not trying to BE the Conservator...why would III need to pursue anything? And what if I was dead...? Then what? Do they think they're going to track down my brother or sister and get them to do any paperwork that isn't in anyone's best interest and would shackle them to this like I've been? That's ludicrous and out of touch with reality. While yes, he is our family, our Dad...he is "just" our Dad. He is not my SPOUSE or CHILD. Everyone I have now talked to is in total agreement that I should've never tried to take the role of caregiver to begin with...I am "only" the daughter. Now, not that I totally agree that I "shouldn't" have tried to take care of my Dad...but when I obviously can't and have been sorely neglecting my own family and health in pursuing my father's 5 seconds of happiness per day...mustn't something give?...besides me?
I swear, everytime I turn around, I get a totally different experience/answer from the same situation. Are there no universal standards followed? What are rules for? Why so many contradictions with everything?
Whether it's dealing with bank issues or whatever...shouldn't there be some basic, universal rules and laws that EVERYONE follows? Why is it that every branch of bank and hospital and facility has their "own" rules and way of doing things? And why are we sent to lawyers to pay ungodly amounts of money for documents that are worth less than the paper they're printed on?
I never signed on as a Conservator or had the Trust papers officially filed when I found out that it would just make MORE work for me. No freakin' way. And since we all now know that the POA forms are looked upon as worthless...then what exactly is my place? I apparently don't have one unless it's convenient for the person saying so at the time. Either I am "authorized" or I'm not...I shouldn't half-ass be authorized at some places but not others when they don't want me to be. I give up. And I don't trust lawyers or this whole system, county and state government AT ALL. It's cracked.

So I had my Support Group meeting this morning. I hadn't been able to go for two weeks because of all the nonsense happening. I am so glad I made it today. I updated everyone on what's been happening, and got SO much input on everything...I feel a lot better now about this decision to not be the responsible one for my Dad anymore. And there was a woman named Rita who I'd never met who came. She has dealt with two parents in this situation and was an abundance of knowledge for me...she even chimed in on the whole money situation because she has been dealing with that as well. Although I have a massive headache right now from being stressed before the meeting, I do really feel a weight has been lifted...there is absolutely nothing like hearing other people telling the same story you are in at this very moment. Everyone had some input either about how I obviously need to let go of feeling guilty...to what they would do about the money...to the fact that they absolutely forbid me to sign ANY documents regarding my Dad's stay at the VA so I am not held responsible...and was even offered to be treated to a massage! My goodness!
I told you my support group friends were great!
I still have a lot to figure out and it appears that I will, yet again, have to meet with some sort of lawyer to figure out all this money nonsense...but for the moment, I am going to just be.

Dad, Psych Ward Resident.

2008-08-27T07:26:00.000-07:00

After several calls to the place Dad was supposed to be, I found out Dad had been transferred the day after he arrived...to the Geriatric Psych Ward in Menlo Park. The Resident/Assistant to Dad's new Doctor called and told me that Dad was very combative and that though they had originally hoped to take him off all meds to see what they were working with...he is far too combative to allow that. He screams, tries to hit and generally wreaks havoc every second. Sounds a lot like how he was here at my house. They've got him on Seroquel, Haldol and Olanzapine...all pretty serious drugs...and all drugs that are not necessarily approved for use in the elderly with dementia because of the risk of sudden death. My god.
And apparently Dad needed an X-ray of his hand...the Resident didn't know exactly how that all came about...but it took several people to restrain Dad to even get the X-ray...which showed he had many small fractures throughout his hand. They have no idea how that happened. All I know is that in the last few weeks, Daddy has swung at so many objects, fallen, and thrown TV's...so it could've been any number of things that caused this.
I asked Mr. Resident Doctor Zambrano what he thought about contacting Dad or visiting...and he said I should ask the Nurse's since at least one of them is assigned to Dad 24/7 due to his combativeness. He said that they would be the best to assess whether he was having a good enough day to talk/visit. Really, that makes no difference...I don't know that Dad has any good days anymore...and considering we live a good hour and a half from Dad now, it would be an all-day trip to see him...a trip we'd have to plan in advance...and how can you "plan" for Dad to have a good day? You can't. So I guess we can call or visit at our own risk...and without the kids.
I think it may take me a while to get up the nerve to go...and I may wait until brother can go with me. I'm having a really hard time with all of this. I've been doing all kinds or organizing and cleaning around the house and yard...I mean, it's stuff that needs to be done anyway...but I am definitely using manual labor as cathartic therapy. Hey, if it works, it works. But is it working? I dunno.
I also had fun yesterday with the bank. We are trying to get Dad's Social Security check direct deposit nonsense switched to a new account, so that once the Conservatorship thing goes through, there will be this one, untouched account that has only ever had his SS check going into it. But no, hassled again. I got a load of paperwork and was told to call Social Security directly...which got me 47 minutes on the phone with an agent and no progress. Even though I went with Dad 3 years ago to the SS office to set all this crap set up, there was, of course, no record of this and so, of course, I am "not authorized" to do anything. SS doesn't recognize the POA forms. It seems that no one does unless you don't have one, then they want one. Naturally!
And, it seems that the bank doesn't have brother's POA form in the system either, which makes no sense since we both sat at the same desk on the same day and gave the bank our POA form...that has BOTH of our names on it. If they got the form with MY name on it...they automatically have my brothers name too...but no...so that needs to be done again. Seriously, how this world keeps spinning, I really don't know.

Adjusting to being normal?

2008-08-25T07:33:00.000-07:00

I haven't posted because I am not used to this. I have nothing to report about my Dad.
I haven't called him since they took him because I know he's going to be completely confused and crying if I do, so I plan on calling the Dr. there today to see how things are going first.
The last few days I have swung between feeling completely exhausted and useless, to sad and depressed, and then full of energy that my body really isn't able to utilize.
I feel like I have failed my Dad and myself for allowing this to happen, for letting him be where he is.
YES, I know that common sense and logic (and everyone around me) tell me that I have to, for once, think of myself and my own family...that this situation was insane and that I could not go on like that anymore. I know all that. But it doesn't change that I still feel like I failed. And I don't get how everyone else can just go on like it's normal...is this normal? It's normal to be able to be happy while one of your family members is in a psych ward waiting to be made a ward of the state because you couldn't take care of him? If that is normal, then this explains why I am NOT "normal" and never have been.
This is not right, it's just not.

Just Another Day.

2008-08-21T10:15:00.000-07:00

I slept some last night.
But I am frazzled, I have hives, and my skin looks like that of a hormonal teenager.
Stress. So much fun.
I called Palm Haven to ask if there was anything else I needed to sign to make it official that my Dad was not coming back...they seemed unsure when I picked him up the day before.
I talked with Christine, who was the first person I dealt with, whom I did all the original paperwork with, who was the one who initially sold me on the place.
She said she and other managers had NO idea what had been happening, or why I took my Dad out. She seemed genuinely mortified when I gave her just a handful of the details of phone calls I received...especially the fact that people kept saying it wasn't the right place for him, that he was being kicked out, etc. Apparently the Nurse who had yelled at me that one night and said he was being kicked out got fired. Apparently there had already been some issues with her tact in the past, and what she said to me was the last straw. I kinda feel bad that she lost her job, but clearly she shouldn't be in this line of work. It's stressful, hard, exhausting...and you HAVE to be able to perform under pressure. She definitely lacked those qualities.
Anyhooo...Christine said she really needed to find out who said what and why...that there is just no excuse for what they did. Unfortunately I was usually in such a sleepy stupor, I rarely caught anyone's name, so I wasn't very helpful there. She, like the Head Nurse (Matt) that I spoke to, said that their nurses are very well trained to deal with people like my Dad and that there should've NEVER been anything said about him being kicked out...that it sounded like the nurses just didn't feel like dealing with it...and she wanted to know which ones those were because they don't want people like that working there. Uh, yeah, I agree...although it's far too late for us, I hope no one else goes through this, it was hell. It's quite enough dealing with everything this disease brings...but when you find all these facilites advertising they care for people with diseases such as this and then they threaten you with being kicked out...well, it's more than most people could deal with.
I feel terrible today. My body hurts and I just feel, I dunno, like a live wire, but too tired to move. It's like an inner trembling.
I hesitate to call my Dad for a few days until he gets somewhat situated. I know they are going to take him off all his meds again to see what they've really got to deal with. But I am afraid that what they're going to see will equal him being medicated into a vegetative state. I know that there is no hope for him now...that he cannot ever have a normal day again, that he will never be anything but confused and paranoid and scared...and that his combative outbursts and even worse behavior during that "sundowning" time will mean he needs to be medicated to the point of being manageable...which basically means being a mindless entity that still resembles my Dad. This is what I have been avoiding, knowing that the time would come soon enough...but I wanted to try to preserve what tiny bits of lucidity he still had left. I know now that he is not manageable in any way anymore without medication...and that not medicating him just for the sake of 5 minutes of clear-headedness is not the right decision. I guess I prolonged it as long as I could, I dunno. Did I?
We're going a flooring place in a little while...we need to get a lot replaced. We already tore up the bedroom carpet...holy stench!...and hubby tore out the bathroom flooring yesterday...it was thoroughly soaked and smelly too. Dad had accidentally flooded the bathroom at least 3 times before we realized just how much assistance he needed in there. What's weird is just HOW much water was underneath. It's a linoleum floor, and our house is 3 years old, and the caulking seal was still intact...so I wonder just how it got that soaked...and it makes me worry that behind the wall is wet as well. That's not good.
Okay, more phone calls to make to get some of Dad's stuff organized.
Groundhogs Day, everyday.

Arrrrgh. Times Two.

2008-08-20T09:45:00.000-07:00

Okay, no calls last night...but I took the phone off the hook so I don't know if they tried to call. It really irritates me that I have to take my phone off the hook to sleep...nevermind the fact that if an ACTUAL emergency happened, then I wouldn't find out about it.
SO...
My this morning Dad's VA Dr. called and said that there wasn't a bed available at the Geropsychiatric unit in Menlo Park, but there was a bed available at the Palo Alto Psych unit and they could admit him there and then transfer him when one was available at the other facility.
Okay, I think?
So I call the Nursing Home Daddy's at to tell them I'm coming to take him...to make sure he was awake, ready, etc. before I got there...and they tell me I CAN'T take him...that they need a Doctors order.
Huh?
I brought him there, admitted him...but I can't take him out?
3 conversations with 3 nurses later, they say they will call the onsite Doctor because HE has to give me permission to take my Dad.
I'm missing something.
They say that THEY are responsible for him, so that even if I wanted to take him HOME to MY house, they would have to give ME permission.
Uh, I didn't SIGN my Dad over to them, he is not their "ward"...he is merely a resident at their facility...that we are paying for.
Anyway, they say they'll "try" to get the paperwork done and contact the Doctor.
I say I'm coming in 30 minutes regardless.
I call my brother to see if there is any possible way he could come with me in case Dad gets out of hand. Hubby is home, but bringing him means bringing the kids...not an option. Brother said he could come! Yippppee! So I am going to pick Dad up then pick up brother on the way to the VA.
Then the VA Doctor calls back and says the Palo Alto VA just told her that the bed she was going to reserve was being reserved for someone else...but they're trying to make it official, so they'll get back to her...and that I should just hold on until she (if) she calls me back.
Ummm...so do I call the facility my Dad's at and cancel the whole paperwork trail and "getting permission"...or call my brother first to tell him the whole thing is off for now?
I leave a message with brother.
About 20 minutes later, the VA Dr. calls and says she's got the bed, to come now, before she leaves for lunch. It's a 30 minute drive to get Dad, and another 30-ish minute drive to get brother and get to the VA. No time to spare.
Brother calls just in time, he'd just gotten my "hold on" message...and I tell him we're back on.
I go to get Dad.
I wasn't prepared for seeing the way he looked in that Gery Chair thing. He was standing up in it, but he looked so pale and sad and he started crying as soon as he saw me. He thought he was in Albuquerque, NM...and that we'd left him there. Oh god, please don't cry, please don't cry, I tell myself.
They had already shoved all his clothes in a big plastic bag and he was ready to go except I had some paperwork to get.
I kept seeing this one guy milling around...not a patient...someone who looked like he worked there. But I was too busy to pay too much attention to him at the time.
Two Nurses helped my Dad and me out to the car...and as we're pulling out of the parking lot, the guy who was milling around came and tapped on my window. Apparently he was their Social Worker and wanted to know why I was taking my Dad out so suddenly. Not that I had time anyway, but I wasn't about to have that conversation with my Dad sitting there.
Many Doctors just freely discuss their "demented" patients right in front of them because they figure they won't recall any of it. That still doesn't seem right to me. I told the guy I would call him later.
So of course I got lost trying to pick up brother from work. I am so scatterbrained these days, getting lost is the least of my problems.
But we finally get to the VA, meet with the Dr. and she chats with Daddy for a few minutes. She was alarmed at how much he had declined since she last saw him a couple of months ago.
She tells us to go get Daddy some lunch while she does paperwork and orders the Ambulance.
I am feeling anxious.
Daddy has a hard time eating...he is kind of jerky and shaky. Brother gets the fun of taking to the bathroom afterward this time. That is an ordeal everytime...I should know!
I kept it together pretty well until they got Daddy into the Ambulance. Daddy had already been crying off and on and I had to look away, or think of something that annoys me to keep from bawling. I lost my "composure" when we were walking away from the Ambulance.
None of this is right.
He shouldn't have to go to a place like that. But I know that I have literally exhausted all other options, myself, hubby, and my two kids in the process of trying to make things the way IIIIII want them to be for him.
It's not what is the reality here and I have to accept that.

This will not be easy.

Let me sleep pleeeeeeeeeaase.

2008-08-19T07:17:00.000-07:00

At a few minutes before 10pm last night, the facility called. I didn't answer it initially because I was SLEEPING and let it go to voicemail...then I got up I listened to it in case it was actually "something" this time.
The message didn't sound good. The girl left no real information...she just said that she needed me to call her back...she sounded, well, like she had bad news.
NO, no, no...!
So I called right back.
Drum roll....
She says that she was calling to let me know that EARLIER they had noticed a bruise on my Dad's abdomen...EARLIER...and that he was sleeping right now.
I swallowed the words I really wanted to say and asked why they didn't call me EARLIER or tomorrow MORNING, like, when we would be, like, I dunno........AWAKE????
Then she apologized and hung up. I took the phone off the hook again.
So...yet another call to the head Nurse, Matt, tomorrow morning, I guess?
After the call, of course I was wide awake. I started worrying about things concerning the conservatorship...like WHO is going to trim his fingernails and toenails when he's a ward of the state...will anyone do that? Will anyone cut his hair? Shave him? I was making myself crazy thinking that no one will take care of his needs.
Not that he thinks WE were taking care of him. Everytime we didn't get to him within seconds, he'd yell that he'd been waiting an hour...an HOUR...that is exactly what his mother always said too. No matter how quick you got to Nany calls, she would cuss and yell that she'd been waiting an HOUR. Always an hour.
I dunno. I need to stop thinking about all of this. I am making myself insane with worry.
I dunno, Daddy, I hope that you will eventually go to a better place so you will have an understanding of what really went on.
It kills me that there's the possibility that he thinks we didn't try our best to take care of him.
Sigh....

Hmm...but oh, there's more...

At around 11am I got a phone call from the facility. Seems that Daddy is being so disruptive they had to put him in one of those weird new "gery" (sp? like geriatric?) chairs. Apparently Daddy went ballistic again and was in and out of people's rooms...eventually into the room of a woman, which they of course frown upon for good reason...and he ended up throwing a TV table over...thus also throwing her TV on the floor...and it, of course, broke.
I'm sure I'll be getting a nice fat bill for that...wonder if they're gonna splurge and buy an even bigger TV now?
The Nurse said that my Dad is actually sort of "okay" with being in this chair...it's this weirdo contraption made of what looks like PVC pipe, fashioned into this box-frame of sorts...and they can use it as a seat or walker...but it limits the space they can fit into (so they can't be as invasive in other people's space)...and if they become out of hand, it has wheels so the Nurse's can gain control much more quickly.
I tell ya...something new and interesting everyday.

First moment of peace.

2008-08-17T11:29:00.000-07:00

The facility let my Dad call me yesterday. It was horrible. He cried the whole time and sounded awful. I tried to be calm and reasonable and calm him down, but I felt like I needed to calm myself as well. It was so sad. He was saying he was lost and needed someone to find him...there is no reasoning with that, especially when he was crying and sounding so pitiful. I ended up talking to a Nurse afterward to ask what they were giving him...they said he'd actually slept the whole night, but he was very emotional all day. They are giving him Risperdal (an anti-seizure drug that doctors found helps with bi-polar) and Restirol for sleep. I don't know a lot about the Restirol, but I don't like that they have given him Risperdal...that stuff is like a chemical lobotomy. I don't know, I hate this. My first instinct is to jump in again...but I know I can't do that.
After that phone call...I had some downtime for the first time in nearly forever. I ran a few non-rushed errands, and then just stayed home...sat around, and there were NO calls last night. I didn't even have the phone off the hook...I actually checked the phone this morning to make sure there was a dial tone...how pathetic is that?
Anyway, this small taste of sleep has me more tired than rested. After I go grocery shopping, I plan on doing a whole lot of nothing today...I have my weirdo whole-body, head-to-toe bone pain today from my so-called fibromyalgia or whatever it is. Must vegetate.

Only IIIIIII get an Opinion on this!

2008-08-16T07:39:00.001-07:00

Okay, so Wednesday morning came...time for us to take Daddy to THE only place that would even consider letting him in their facility.
I told Daddy that we were going to a place that would be able to take better care of him, etc., etc., and he was in total agreement. I KNEW his calm response would be temporary.
By the time we got there, he was freaking out. He started crying and begging us to promise him that we would be coming back for him. He told the Nurse that "the only thing they (we) have a problem with is that I can't sleep but I can't help it, but there's NOTHING wrong with me".
Sigh. Poor Daddy. Damn Lewy.
I had to leave the room several times to not start crying.
He was getting pretty agitated and wanted to go to lunch and to get some gum...he says gum calms him down. We'd confiscated his gum at our house after he kept chewing it while laying down (and falling asleep with it in his mouth) and then he'd spit it on the carpet. We still haven't been able to get all the gum cut out.
So we went to lunch. He wanted a burger and pineapple coconut shake...which means Dairy Queen. He was agitated the whole time. When he was done eating, he wanted to go wash his hands and we offered him some napkins first to get the majority of the mess off before we took him to the sink, but he started yelling that we "wouldn't even take him to the bathroom because we think he's going to try to run off".
Sheeeesh. As if he could really get away even if he wanted to. Even at his highest speeds, his shuffle is easy to catch. We ignored his responses and focused on distracting the kids from his bad behavior. I think my kids are going to need counseling.
Anyway, so hubby gets Daddy all washed up and then I ran into Walmart across the street and got him several packs of gum, and we took him back, got him settled into his new room, and went home.
The place had assured me that they understood his condition completely, not to worry, etc., and I looked forward to some sleep that night. I was out like a light early, dead asleep, when...
Uh, no.
At about 9:50-something, the facility calls. Just seeing the number on the caller ID stressed me out. They were calling because I had written down that Daddy was born in 1934 and he was arguing with them that he was born in 1939.
They were calling to settle an argument with a Dementia resident about their birthday?
I was dumbfounded.
I called the Admin. the next day and told them what happened and they were equally as shocked and assured me that would never happen again.
Uh, yeah...so the second night at 8 pm, I get another call.
This time it's the Nurse that doesn't speak very good english and she is IRATE. Daddy was arguing with them about pretty much everything and being combative...swinging at them. He was absolutely confused as to where he was, etc. I could hear him yelling in the background. But the Nurse was yelling just as loud and telling me I needed to come there RIGHT THEN to either give him pills to calm him down or take him home with me because he was being kicked out.
Needless to say I was a little upset. Of the almost 40 places I called, this place was the only one that would take him...and they were kicking him out on the second day?
REALLY long story short, about 5 calls with the irate Nurse later and at around midnight, it was decided that Daddy was staying, at least for that night. The psych-ward behavioral center that she was trying to get him into for evaluation said they wouldn't take him because the 'policy' is that a facility must have the resident for at least a week before shipping them off (yes! finally someone ELSE is being turned down!)...and because Daddy has no insurance.
I called my brother to tell him what was happening and to ask him if he's going to have a problem with Daddy being institutionalized...because I am NOT about to go on another hunt for facilities. I have spent the last 3+ years of my life taking care of my Dad and I am beyond exhausted. I am ready now for the State to have conservatorship. I can not and will not make these decisions anymore...and I can just assume that brother doesn't want this responsibility either. He doesn't. Who really does? This is a nightmare.
I took the phone off the hook. But I did not sleep that night.
The next morning I was up early. I finally put the phone back on the hook at 6:54 AM. 3 minutes later the facility called me.
This Nurse tells me she's "been trying to get a hold of Roy's daughter..." because Daddy had fallen during the fiasco last night and scraped both knees.
They were trying to call me for hours, PRIOR to 6 am, to tell me this.
This Nurse also tells me that she doesn't think their place is the "right" place for my Dad.
I ignore her comment and say nothing because I was trying to get dressed...
I was getting dressed and ready...finally attempting to get out of my house with my daughter to visit a friend who lives out of town a couple of hours south. Some resemblance of a life? What normal people do? Wow!!!!!! Could it really be?
Nope.
What I really ended up doing was fielding call after call on my cell phone about what's going to happen to my Dad. I got a message from my brother that he had indeed made a call to someone at the facility...someone named Matt...and the message really ANNOYED me because he said Matt said they'd "handled everything" the previous night. Uh, NO, they DID NOT "handle it", or I wouldn't have had to calm the NURSE down on the 5 calls I spoke with her. And they wouldn't have been threatening to kick Daddy out or telling me that IIII needed to come there and calm him down, give him pills, or take him home. AND they wouldn't have been trying to call me ALL NIGHT to tell me about scraped knees...if they were "handling things".
I talked to the guy Matt (who ended up being the head of Nurse's) that my brother talked to and told him about the message he left me in regard to THEIR conversation. Then I filled him in about what REALLY happened the night before...because apparently none of his Nurse's told him what they told ME, of course. They hadn't told him that they said my Dad was being kicked out. They didn't tell him that they were YELLING at me. They didn't tell him that they told ME to drive 40 minutes to give my Dad meds or take him HOME.
After all was said and done, Matt profusely apologized and assured me that it wouldn't happen again...that there would be a meeting to discuss the fact that it is NORMAL for residents to 'flip out' and take some time to adjust to new surroundings...AND for them to get on a medication that will allow them to be calm. He said that he was embarrassed that his Nurse's had done what they did, because the are all fully trained and capable enough to have taken care of the problem without calling me. He said they were clearly just looking for what was easy for THEM (thank you!). He also said that the irate Nurse that had called me wouldn't be calling me again...he said that he'd noticed she wasn't the best at handling incidents such as the one with my Dad.
I felt better. But to be honest...even though this head of Nurse's was definitely intelligent and calm and seemed to have all the right answers and knowledge to take care of my Dad...unfortunately he can't be everywhere at all times. He was apparently on duty when the fiasco happened and he had no idea because no one came to him. Clearly not all the Nurses are like him. I wish.
So, I have some things to decide. I can't just hope that this Matt is going to be able to change things. He said he'd JUST come to this facility two weeks ago, so he's new and trying really hard to make it better. But I can't count on that. I know from experience that the very BEST of intentions doesn't necessarily mean success...or that they will stop calling me every night.
And I can't be threatened with my Dad being kicked out anymore, it's too traumatic. I am now accepting the fact that I cannot do this. I won't. I can't disrupt my kids lives anymore. I can't disrupt MY life anymore. I can't make all my Dad's decisions and be running around scatter-brained, too tired to even know what I'm doing if it's not on a written LIST, and not spending time with my own family because my Dad is having yet another crisis. My body is tired, sick and weak.
And so the next phone call I made was to my Dad's VA doctor who had FINALLY called me back that afternoon (after 3 weeks of no response). She said she was on vacation and apologized...but I know for a fact that she's been back for two weeks because her nurse told me so. But whatever, it's not like confronting her about that would get me anywhere.
She wants to send my Dad to the VA Geropsychiatric facility (did I spell that right?). The same one that was a nightmare...the one that made him a ward of the state and told me to leave him, to forget about him. I discussed conservatorship with her and she was in full agreement that that might be the wisest decision...to have someone else, not me, be appointed "the responsible party" for my Dad. She has seen ME for pretty much every visit she's had with my Dad. She knows that I am the one in the driver's seat and that I have not been well and that I have two small children to consider. She explained the whole conservatorship process to me, and I am going to think long and hard about it...although I don't think there's anything to think about really. Someone else (not in our family) would be appointed to make all my Dad's decisions. THEY would find an appropriate facility...and would probably have a lot more pull to get him in to a suitable place than I would...unlike my time-wasting calls-a-plenty to places that shut me down cold. We would still be able to visit and give input...but the conservator would make any final decisions...and would be the one to get the harrassing phone calls.
If thsi happened, I would possibly be able to get rested, spend time with my kids for once, actually see a friend or two more than once every 6 months, get well, and stop TWITCHING.
Sounds pretty good to me.
So I have some things to think about...and NO ONE gets to have an opinion BUT ME.
I may ask for someone's input, because that's how I am. I want family/Doctors to be involved despite the fact that I know they won't actually HELP...but I want the input so that I can weigh the pros and cons and TRICK MYSELF into thinking I'm really not making all the decisions on my own, which is the reality. So, I can ask for all the opinions I want, but in the end...no one has the right to get mad at the fact that I may not even consider your opinion because IIIII have been the one here, living this. I've been knee-deep in phone calls, paperwork, legal fees and meetings, banking hell, people treating me like a ditzy idiot because I "look too young" to be dealing with this, touring facility after facility, Depends undergarments, doing paperwork to move my Dad IN to facility after facility, doing paperwork to move my Dad OUT of facility after facility, asshole Doctors, asshole bankers, asshole Social workers, nutball psychiatrists....seriously...I could do a whole blog about all the rude, inconsiderate people along this path...but I get the final say on what happens next.
No backseat driver's allowed, so run along.

My last resort came through.

2008-08-12T19:31:00.000-07:00

After hours of faxing and phone calls, Palm Haven Manteca said they could take him. My god, the relief. And, for once, I actually do not feel bad that I am relieved. My kids are so terrified of Grandpa at this point that they run out of the room when he comes near.
And he has been SO awful today. Literally every 5 minutes for hours he was yelling that he needed help.
Everytime we move him it's at least a 15 minute process because he moves a half inch at a time and he can't turn or bend...we do all the work. So...we'll do all of this and get him in the chair he asked to be in...then 5 minutes passes and he pops right up with complete ease and screams for help into bed again. Another 15 minutes to get him in bed and then 5 minutes later he pops right up and screams to go to his chair. And everytime he screams for us, he says horrible things about how he's been "waiting a Fucking hour for us and how we're monsters and mutherfuckers and how the lord will make us pay for what we've done to him".
Holy CRAP.
I am SO not good with that kind of behavior.
I should be the one that can rationalize that this is a disease, right? That it's the disease making him say these things? The thing is that his mother was exactly like this...but not just with the dementia...that was her personality. And my Dad was like this as a drunk. He really wasn't a very nice person, to be truthful...and this just seems like his old personality coming out again...through Lewy.
I hear about people who were kind, quiet people, preachers even...who, once struck with Alzheimer's or another dementia, become a monster. I have to admit that I think there is some part of that "monster" that was really inside of them all along though. I just don't see how someone who never cussed their whole life would suddenly utilize words they shunned...unless it was a quiet anger creeping in them the whole time.
So...after taking a half hour of being cussed out, I'd remind Daddy about how IIIII am the only one that's helping him...I asked him if he remembered anyone else since my Mom died coming to help with anything. He quieted down.
Then he fell out of bed trying to pop up again and hubby helped him back up...and then he cursed hubby out again.
When hubby left the room, Daddy started banging on the wall and doing this horrible shrieking-laugh...like the Joker in Batman...and started squealing in this truly evil voice...he said the second hubby went to bed tonight, that he was going to make sure he woke his ass up right away...and he laughed and laughed and said that he'd show US who's boss and in control.
Lewy is scary, scary, scary.

And the 'accidents'...hoo-boy. Today was another doozy huge one. We are seriously going to have to replace our flooring downstairs. It stinks. He had more or less marked his territory LAST time he lived here...and I got the carpets cleaned and it turned out halfway okay. There are certain areas that have still have a "scent"...but after this time around...dear god...no use in trying to professionally clean it again. Our carpet cleaner needs to retire. There have been so many different kinds of spills, stains and accidents...ick. Bewteen the "accidents", Daddy spitting and smashing gum into the floor numerous times, and all the times he SPIT god-awful things on the floor...I can't even fully think about it or I would probably never take my shoes off. I just hope that I got the carpet clean enough so it isn't posing a health hazard.
Blech.

So, anyway, in closing...

One more night with no sleep.
One more night with no sleep.
One more night with no sleep.

No Facilities for Old Men.

2008-08-12T07:58:00.000-07:00

I didn't even get a chance to post yesterday, that's how crazy it's been.
Daddy is the typical Jekyll and Hyde now. Going from completely insane and angry one second, to crying and apologetic the next. I'm not good with that, so I've been doing a lot of walking away from the situation...giving myself a time-out before I react badly. Especially when he starts these conversations with, say, the floor, and he's arguing with it, cursing it, and then I stupidly ask him if he needs something. Bad move. He acts like a mean drunk. He was a mean drunk back in the day. I remember it well. It's as if he's somehow regressed into a drunken stupor without the alcohol.
WELL, the place I was counting on...the nursing facility that caters to people with psych-oriented issues denied us. They said they thought they already had too high of a ratio of people like my Dad. Oh, and that they already filled the bed anyway. 'Nuff said. No one wants to take my Dad. I almost cried on the phone when they told me this. Honestly, I have been turned down by about 35 nursing homes since Friday.
One place did refer me to a locked nursing home in Manteca, which is about 30-40 minutes from here. Within minutes of being turned down for the other place, I found out about this place and I immediately wanted to go look...but...that crap-hole place I talked about with the bratty girl LVN's was sending their Nurse to assess my Dad, so I had to wait.
Take a guess what happened! We sat there, time wasting and ticking away, and the "assessment" Nurse, who looked and smelled as if she'd been smoking since age 2, tells me she doesn't think they can handle him because he can walk and wanders.
F***********CK! I TOLD THEM that he was ambulatory on FRIDAY!!!! I TOLD THEM he wandered on FRIDAY!!! Now it's Monday and I am exasperated, and she acts like this is some new development. I'm sorry, but I must say it....ASSHOLES! Why waste their time and MY time? Arrrrrrrgh!
So the second smoker-Sally left, I jetted to the Manteca facility. While it wasn't up to my clearly impossible standards, it's doable. It's a locked unit, the people there all have some sort of dementia, and they SAID they were positive they could handle him. I repeated at least three times that my Dad wanders, he can walk, and that he gets argumentative. Their answer to all that was, "That stuff happens".
Sadly, I am so jaded that this is not making me jump for joy because 3 other places said the same thing, and then they changed their minds.
Someone is supposed to call me this morning...but I'm already planning on calling by 9 am if they haven't called me by then.
At this point, I would've settled for the craphole place. I am so beyond exhausted. I feel like IIIII have dementia...I can't remember anything, I start doing something and forget why I am there...I'm delusional, moody, and fed up. Someone must take my Dad. Right now. This minute.
And this minute, of course...now that it's morning and I just made the kiddies breakfast...and I need to get ready for the long day ahead...guess who is completely knocked out and comfortably in sleepyland?
Yep, Sleeping beauty is finally asleep now that the rest of us have to be up. He got us up SO many times last night that I can't even remember if I ever fell asleep at all.
Hubby is at an interview this morning so I am hoping that Daddy stays asleep. I have a REALLY hard time getting him in and out of the bathroom considering I am half his size and his limbs bend about as well as a broomstick.
If this place today doesn't pan out, I may just have a nervous breakdown.
And then I'll have to start calling facilities that are hours away, because that's all that's left.

The Irony.

2008-08-11T08:07:00.001-07:00

What was I just saying?
Oh yeah, so for the rest of the night, Dad was psychotic and pissed off. He was jibber-jabbering about stuff I'm sure I will never understand...things and conversations that sounded like he was repeating from way back when...and they were conversations where he was mad, really mad.
One time he was yelling at the wall and I asked if he needed something...and then I was brought into the argument. He wanted to tell me that his ex, ex, ex wife had shown up without his knowledge and that, now that it was late, he was wondering if I could give her a 'meal ticket and bed'. I questioned him further...especially since he was only married one time to my mom. He said that she was not my mother, and asked what my last name was. When I told him, he didn't know that name, and I told him my first name and then said he'd known that all along (as if I questioned his sanity!).
One of the other 12 times he woke us up last night he said he wished we'd all be crippled or blind for what we've done to him...how we've mistreated him. Of course it made me feel sorry for him and started me wondering, in my obvious delerium, if there was any way I could not send him to another facility.
The last time he woke us up was for another accident. Hubby found him standing in the shower (he didn't know where he was) and the floor was covered in it...ack!...but his Depends was pulled up and fully dry. What the...? He was cussing us out left and right...because we'd made him have an accident. He said if we didn't hurry up and clean up that damn mess we'd MADE him make...he was going to bust through the glass doors.

My horoscope this morning said this:
"You may be wondering whose shoulder you should cry on when usually yours is the shoulder that everyone else likes to use. The collar of your shirt is probably soaking wet by now thanks to all the tears that have spilled on you. Your compassion for others is definitely one of your biggest strengths, but be aware of the fact that it can also be one of your biggest weaknesses."

Wow.
But, Arrrrgh.
As if I didn't know that...but somehow seeing that in writing made me have flashbacks of the last 3 years of dealing with Police, Managers, Doctors, Administrators, the front doors of facility after facility, endless nights with no sleep and my own health getting worse, and then...again, as if I didn't know this too...my kids. My kids, who have been dragged from place to place at all hours because of this freakin' Lewy Body Dementia. My kids who are only 5 and 9 right now...who have also for the last 3 years been thrown into this mess. My babies, who don't even really try to get me to play with them anymore because they already know what the answer will be...that I have to help Grampa, or that I'm tired, or that my body is not working that day from exhaustion. I have to let my guilt go and know that I did everything I could...because it's not just HIS life that is being killed by Lewy Body. It's mine, my husband's, and my two precious babies. I am missing out on important moments with them to help my Dad. Something must give.
My hope is one of two things: that either my sister's philosophy of what happens to us when you die, or mine, is 100% true...so I can let this go.
Her theory is that once you're gone, that's it. You're dead and don't know you're dead...because you're dead. In that case, my Dad would, well, be dead, and wouldn't have all these crazy thoughts about what he now thinks everyone "did" to him. The end would be the end and there would be no looking back at what really happened or what we actually sacrificed to try to help him. There would be no looking down from heaven and seeing us grieving him because he would just "be dead", in the ground, lifeless.
And then my theory is that we go someplace better and finally see what our lives were and the reality of things that happened to us, or that we made happen to ourselves. In that case, my Dad would see that, though I know I was not always perfect or patient, I spent 3 years putting my own life and my little kids life on hold...I dropped everything at all times...to make things better for him...and nothing I did was good enough...and I drove myself into the ground, lost friendhships (although, really...good riddance to those jerks), even jeopardized my marriage trying to prove that I could handle everything. Which I can't.
Anyway, it's now morning and everyone is awake...except Lewy...he ate breakfast and went back to bed.
I have a million phone calls to make. Lewy must go live in a nice place with caregivers who are not me.

And then sleep goes away. Arrrgh!

2008-08-10T17:53:00.000-07:00

Daddy did not sleep a wink last night. And every 20-30 minutes he was yelling for help to go to the bathroom. He was very agitated too, and got pretty combative with hubby. Daddy swung at hubby two different times yesterday. He also keeps insisting that he will "get out of this dump one way or another".
Everything is a dump to him. The fancy places I've found him to live and even our house, which is only 3 years old. All dumps. The places that were actually dumps, he really didn't complain about. So obviously, me feeling guilty about what a place "looks like" is really all about me and my standards, because he'll hate everywhere he goes anyway.
So.
After lots of deliberation and asking a few people for their input, I've decided on a place for Daddy. It was the last place I toured, and, honestly, I am still struggling with how the place looks, even though by far it's the best-kept nursing home I saw.
I called, my god, over 30 homes and was shut down cold by all but 3. The criteria for these places is this: they really don't want people with dementia. If the person does have dementia, they have to fit into this category: female and non-ambulatory. So basically they all want the "pleasantly" confused little old lady who sits in a wheechair. Unbelievable.
The 3 places that would even consider taking Daddy were: One was on the busiest street and most ghetto-ish part of town. It's not locked, so anyone can come in or out, and for the people with dementia, they wear a wanderguard bracelet that sounds an alarm if they leave...and considering that when the mood hits Daddy can almost run...I am NOT putting him in a place like that where he could run outside and be hit by a car if someone doesn't get to him quick enough. The second place was, to be blunt, the worst looking place I've seen and the LVN's were all very young, which has not been a good thing so far. In the first few minutes I was there, at least 4 of them were rolling their eyes at either residents or the Administrator. Uh, sorry, NO. I've already dealt with bratty little girls who shouldn't be in this profession, and I am not signing up for that again.
The third place is actually a skilled nursing facility that caters to people exclusively with behavioral issues...people with dementia/alzheimer's and older people with other mental conditions. The facility is older, and it's definitely not "nice"...it could use a lot of work...but the Nurses there were the first ones I've ever come across that didn't look miserable. They seemed to actually be enjoying themselves and the residents. Many residents there are kind of easy to love, many have such mental deficits that they are mentally like an 8 year old. Most of the employees have been there for at least 10 years, and one has been there for 30 years, since the place opened. I think that says something. One person there even said that they absolutely loved their job there. Not one time have I EVER heard someone in this line of work say that. Not once. Their program sounds impressive...and though I am still struggling with the whole idea, I think this place could actually handle my Dad...because everyone there is JUST like him.
Tomorrow I will start the paperwork and see where we get.
Daddy has been unusually happy and calm today...and he hasn't needed as much help in the bathroom or with anything really today, which is so truly bizarrre, but very typical of this damn disease. But all of this, of course, makes me feel bad because it doesn't matter now...temporarily calm or not, he must go live somewhere else. I know that tomorrow, or even within a few hours (or minutes), he could be back to screaming and fighting and being completely unbearable. My decision is made and I CANNOT let my guilt make me think I can have him here. I tried. I tried twice. Three times. But...even knowing that I've done a hundred times more than anyone else would've even thought of doing, I still feel bad, I just do. I may not have had the best relationship with him growing up, hell, no one ever has...and maybe he really did suck as a Dad and never really took care of us...he's still a human being that deserves to be treated with some sort of dignity. I wish I could provide a better environment for him, but I can't. Case closed.

Sleep finally comes...like a boulder.

2008-08-09T17:47:00.000-07:00

Last night we gave Daddy his dose of Xanax. Need I mention again that I do not necessarily approve of these sorts of drugs...?...but he was SO very agitated that we had to do something. All day he'd been getting irritated over everything. Then he was yelling at us, saying he was going to "call the law", and then, my favorite...he yelled at my 5 and 9 year old and said they were letting the "jiggaboos" run up and down the stairs. I tried really, really hard not to respond to that, but I couldn't help it. I did raise my voice and tell him that my kids are not racist, and we do not say or think things like that in my house. Period. The he got even more mad and hubby tried to help him to his room and Daddy swung his arm away so fast that he came within an inch of elbowing my 5 year old in the face. Both kids started crying and we told Daddy it was time for some quiet time in his room. Then he yelled more.
Arrrrgh!
But whatever took place between then and bedtime, I don't know. At 9 pm we were beat so we headed to bed. I checked on Daddy one more time before I tried to go to sleep and he was in his bed already sleeping. I couldn't believe it.
Then this morning I woke up at about 6am and realized Daddy hadn't woken us up ALL night. That dread started creeping up my throat.
I went downstairs and he was laying on the floor, halfway inbetween his room and the hallway that goes to the bathroom. There was no sign of blood, or "trauma", but I couldn't wake him. I got hubby and we couldn't get him to respond.
Then we nudged him as we said his name very loudly and he finally started slurring that he needed to go to the bathroom. We tried and tried, and Daddy could not open his eyes or move his limbs. We mangaged to get him on the bed and we put a Depends on him in case he had an accident. He was asleep within seconds, he was barely conscience of the fact that he was being moved.
I can only assume that the Xanax just finally helped him sleep...and that when sleep finally came, his body wasn't giving it up. He finally woke and ate at about noon, but went back to bed and napped most of the day.
My brother came by before dinner and saw a little bit of what's been happening...although I admit that I wish Daddy would've "performed" for him like he's been doing for us. But, no show.
After dinner, Daddy went into his room and sat in his chair.
I hope he gets some sleep tonight...and that last night's sleep-coma on the floor was some strange fluke. Scared the hell outta me.

Air: A fat-free, no-calorie treat.

2008-08-08T18:25:00.000-07:00

I've noticed that Daddy has been doing one thing in particular a lot lately, and he just did it again...he ate air. What I mean is that he thought he'd grabbed something to eat and was walking with nothing in his hand, leaning over taking "bites" out of it...and even chewing!
I asked him what he was eating. He had NO idea he wasn't eating anything.

I was on the phone with my sister and he was doing strange things that she heard me talking to him about...like he grabbed the mop and was "mopping" invisible crumbs off the carpet. Then he got on the phone and had what seemed like a fairly normal conversation. It actually rather annoyed me because we haven't had anything resembling a "normal" conversation with him in weeks! But right after got off the phone with my sister...talking to her like a normal person would, he did the eating air thing.
Pfffft!
From people I've talked to and things I've read, people with Lewy Bodies in particular seem to be able to "keep it together" for just enough time to make a few people think they sound normal...like they are either 'pulling one over' on the rest of us, or are great actors. But then it's back to the same weird behavior. This disease is truly bizarre.

My hunt for a facility today left me scratching my head. Very few places will even consider taking people with dementia if they are ambulatory (able to walk). I toured two places today and one might be a possibility, but everyone there is JUST like Daddy...most are able to get around and they all have some serious mental impairments. This worries me because Daddy is so quick to argue, I'm afraid that he will be in a constant scuff with someone else is also combative and quick to argue...but, as my sister pointed out, our Dad hates confrontation, so that may make him keep quiet. I don't know. I hate making these decsions.

Lewy, Energizer Bunny.

2008-08-08T06:54:00.000-07:00

Daddy did not sleep last night. Period.
And considering he was frantic the entire day and really didn't sleep the night before either...his day of pacing, sweating, freaking out over anything and everything and having Oscar-winning hallucinations, you'd think he would pass out from delerium. But, no. Seriously, every 5 minutes there was an "emergency" with him yesterday. If we dared to go upstairs to do laundry, go use the bathroom, whatever...he was yelling for us. If he couldn't SEE us, we'd abandoned him.
Last night, about every 20 minutes, one of us was down there helping him in the bathroom or turning off lights and getting Lewy back in bed. His main focus all night was that he didn't know when he was supposed to go to work, so he was all amped up about being late. Oy.
But now that it's time to get up, feed the kiddies, start the day, he is sound asleep. For how long, I don't know...but I do know that I searched all day yesterday for a nursing home that take people with dementia. I was on the phone half the day, looking at places and then of course, attempting to do the things we actually need to get done for our lives and our children's lives to somewhat continue on. This is so ridiculous.
Of the 13 homes I called, there were two in my city that would even consider taking Daddy...one looks like a meth lab and the other doesn't have a bed available anyway.
My search continues today. I must add that on "the" Alzheimer's website, they have this search you can do for facilities...USELESS! One would think that on an Alzheimer's site, they would only list the places that would accept people with dementia's...but, uh-uh...the list they have is like looking in the phone book. I expected more from the Alzheimer's Association, how disappointing.

Devastating exhaustion. Defeat.

2008-08-07T07:36:00.001-07:00

The last time Daddy stayed with us was a nightmare. I swore last time that he would never stay here again. Between the not sleeping and the hallucinations, the messes and complete disruption to every aspect of our lives (what little "life" we could claim), including that of my small children, I swore: never again.
But here we are with him here...because it was getting beyond ridiculous with every single facility...of course NOW I know that the "assisted living" facilities are completely not for someone like my Dad. Either way though, I shouldn't have so much work to do when we're paying out the nose for "care".
What is puzzling me is that each facility has their own system of figuring out what each resident's monthly cost is. There is a base fee, say, $3900, plus "care points" according to how much care is needed. In my Dad's case at the Stratford, with the extra "care points", the monthly charge came to $4205/month. And that was with him showering himself and taking care of all his own hygeine needs. No one told me that they'd been helping him in the bathroom at all. None of them mentioned they needed to help him get dressed, even though dozens of times when I came to take him out, I had to help him do just that. I thought maybe he thought I was in a hurry and he'd take too long, so I always just helped him when he asked or clearly needed it. The monthly rate never went up and I can only assume that we would be charged more for having to shower, clean and dress him. Of course we would, there are no freebies.
Every day here though, we've had to basically do everything for him, and he now told us that they were helping him with everything. Jesus. I would have never brought him back here if I'd known that. Or I would've already had a nurse or something set up to come in...although hubby and I had discussed that we really don't want people we don't know in our house 24/7.
I printed out a list of Nursing Facilities, and this morning is my Alzheimer's Caregiver support group, so I will start the process of looking. It makes me completely ill thinking that he will have to go to a Nursing Home, but these "assisted living" facilities are ridiculous. As "nice" as some of them are, there really is no level of care that takes the stress of the family members...at least not in our case. And for me to admit defeat....Arrrgh. And after, what has it been...6 days?
But I am admitting defeat. I can't do this.
Last time he was here, my health wasn't good, but this time around it's much worse. Everyone warned me, asked me what I was thinking trying this...but I'm too stubborn. What the hell was I thinking? Why did I think I could do this? Why?
I know my intentions are good, I want what's best for my Dad. But I'm beginning to see that what that saying means now..."the road to hell is paved with good intentions".
Touche. Got it. I'm an idiot.
Last night I actually got a few hours of sleep. But it did nothing to make up for the days of sleep lost. I think I have officially lost it.
This morning, I was, as usual, the first one to go downstairs.
Hoo-boy.
Every room down there was rearranged and upside down. He'd been on an eating binge again and had gone through almost the entire supply of snacks I've kept stocked in his room...I just went shopping yesterday too. And he'd had another accident and had tried to clean it up himself, which really just made the situation worse.
I went upstairs and told hubby to get down there and help ASAP as I started mopping. Then I got the sheets off his already wrecked and stripped bed and started a load of wash.
THEN.
As I was putting the new set of sheets on his bed, I heard something.
Clear as freakin' day, absolutely without a doubt, it sounded exactly like my Mom's voice calling my Dad's name.
I immediately looked around the room, looked to see what was on the TV (it was a cartoon) and went quickly into the the other room to ask hubby if he'd just heard that...and I started crying.
I AM losing it.
Now, for the record, I truly believe in that stuff. I've had far too may odd experiences in my life related to things like this to deny that. But this made me question my sanity in a huge way.
Hubby said I must just be way past my limit, under too much stress and beyond exhausted.
Yes, well, I passed that limit a couple of years ago, so now I must just be fried. Irrevocably frizzle-fried. Or showing my OWN signs of Lewy. Dear god.
More later.

Financial, Legal and Nonsense Matters.

2008-08-06T08:37:00.000-07:00

I have tried to touch upon these issues in my entries, but as I type each detailed entry, I forget some things that happened...so I figured I would do a separate post JUST about these matters (and add to it as I get the time). These are all issues I've had to deal with since "taking over" for my Dad.
Okay, so from the very beginning, I knew we'd have to get some sort of legal advice. I was only 32 when these issues started coming, and I had never had to think about any of this before...and frankly, from what few things I have dealt with, I don't necessarily trust lawyers or people who deal with money for a living. That may sound bad, but it's true.
My first real legal experience came when my Mom died. My dad was losing it at that point and so I "volunteered" to call and close out all of her accounts, etc. For about 4 months I had daily (Monday through Friday anyway) arguments with Medi-Cal. My Mom had no insurance and they were saying my Dad was liable for the close to $90,000 in medical fees. My Dad owned nothing...nothing except a car that was worth basically nothing. There was no property, no expensive pieces of anything. He was broke. At the time, hubby and I (well, hubby, since he had the "real, money-paying" job) were paying for everything Daddy needed. When I stupidly mentioned that, Medi-Cal then insisted that WE should be liable for the fees since we were taking care of my Dad. Now...I need to make my point very clear here. I literally yelled at a few people Medi-Cal employees. I kept calling and they kept calling. There seemed to be no end to this. But I pursued it eagerly. In the end, I must've spoken to about 20 Medi-Cal people before I got the "right" person...who told me that OF COURSE my Dad (or we) didn't owe that money.
Seriously. After MONTHS of hell, it was over just like that. So if you have a situation like that, please do not give up. Ask to talk to EVERYONE...every Supervisor alive. Most people may have given up long before I did...but I knew in my gut that my Dad should not be liable for that money. Medi-Cal informed me that "poverty level" was earning $934 or less a month for a COUPLE (sickening!) and my parents made $1200 a month and were clearly above poverty level...so Daddy should be "capable" of paying it off in installments. I'm sorry, but hell NO. I don't what state you live in...but we're in central California...and NO ONE can live reasonably off of even $1200 a month for two people...but someone decided that poverty level was barely over $900 a month? Ridiculous!!!!! And...uh...a 70 year old man with dementia (read: will die soon) who only gets a Social Security check every month could somehow pay off nearly $90,000 if we set up an installment plan? Kiss my ass, Medi-Cal! So I fought. And fought. But it was worth it, damn it.
Then, also surrounding my Mother's final expenses...she had a credit card with about $5000 on it. After about 10 phone calls to several states and the credit card's "legal department", they told me my Dad owed nothing...because he wasn't the card holder...he just had a card with his name on it from my mother's account. A person not willing to make phone calls or question it wouldn't have found out this information. I had to dig, and get on a few people's nerves to get the answers I needed.
Then there were a few small things that happened after I closed accounts for my Mom. In the process of closing things and having final bills sent to me...even though I NEVER gave any of these people any info about me other than my name or address...alllllll my mother's credit information "somehow" ended up on MY credit history. All the credit cards she'd ever had, lists of their addresses I never lived at, and bills she's paid late...all on MY credit. It took about two years to get that all straightened out...and actually, there is still one credit card that was hers that the company refuses to take off my credit because they don't believe me. So be very careful.
When Nany (my Dad's Mom) passed, we didn't know how we were to handle the sale of the house and all the tax information about Dad getting inheritance. We already had Power of Attorney, but I had already been given mixed stories about what our roles and rights would be in helping my Dad. We spoke to a lawyer in New Mexico and he admitted he wasn't sure of California laws, but that he could help us with a "better" Power of Attorney form and issues with the house in New Mexico, but that we should consult a CA attorney as well. All in all, I paid the NM attorney about $2000 for the P.O.A and calls he made on our behalf.
While in New Mexico, getting Nany's house up for sale, we ran into all kinds of fun. Brother was thankfully with me and extremely helpful with the initial house nonsense, so that was great. We had to go close out Nany's CD's and other accounts...and all the cousins came out of the woodwork and wanted to make sure we split the money with their mother...my Dad's sister (Nany's daughter).
Now, legally, we did NOT have to do this. Nany's Will clearly stated that my Dad was the Executor. He was named on the house as joint tenant (not his sister), and the CD's were also only going to him. The checking account that his sister had been helping Nany with had her name on it, but nothing else did. Nany and Papa (before he died) was very sepcific about the fact that they did NOT want our Aunt getting that money. Period. This was not because they didn't want the her to get any...but because after a whole lifetime of knowing my her...she wouldn't use it on herself...she would give it all to her kids that my grandparents absolutely refused to help (because there had been some loans unpaid and they had stolen A LOT of money over the years). BUT...my Dad, being afraid of his own shadow and feeling bad for his sister, and after being brow-beaten by her, decided to split the CD money with her, which equalled them each getting $200,000.
Little did we know that Dad would be liable for that "gift" to her and the taxes involved. More hell. And his sister DID give the majority of the money to her kids...and then they got whatever was left a few months later when she passed away after a long battle with cancer. I really had no problem with HER having that money...I just wish she'd used it for herself, gone on a trip, something. And I feel like I let Nany and Papa down by not trying to override my Dad's decision and doing what THEY had wanted done with that money. Oh well. It's money he didn't have to begin with anyway (right?).
Back in CA, we opened CD's for Daddy with his share. And we also decided that no matter what Dad said, once the house sold, we were putting it in an account for HIM...and no matter what any stupid relative said...we were NOT giving them any. They were not legally entitled to any of it, and we had huge expenses to consider to take care of our Dad now. Wells Fargo said it was easier for me to open them in my name since I handled everything...the lady said that way we could have easier access to it whenever we needed it. So that's what we did.
Then I consulted a CA lawyer. He said I needed to get that money out my name ASAP because tax-wise I was gonna get nailed. He also said that our P.O.A was fine, but he should write us up another one for CA. Okay. Easy enough, right?
More questions popped up and my brother went with me to see the lawyer again. This time he said it would be better to get a Trust, which would be just as easy for us to access, but no tax ramifications for anyone but Dad.
Then I start talking to people at the support group. They said NO...that if I do a Trust then things will have to go to court and if there is any money left over it will be split 3 ways (amongst us 3 kids) by the financial institution the money is in. I don't like that idea because I am NOT going to go to court to get money that wasn't mine anyway...and I was NOT going to use whatever WAS left of "my share" to pay for all my Dad's final expenses. Sorry, but that's not fair. I'm not after this money, but there is no stinkin' way that I am paying for burial out of my "third" of whatever money may or may not be left. That's not right. Especially considering I've been doing all this work and getting nothing but brownie points in return.
Then I see a financial advisor. Super nice, knowledgeable guy, but everything that can make decent money is at a risk...like annuities...and I can't risk this money, it's all I have to take care of Dad.
At the end of the year when I was doing my Dad's taxes, all hell broke loose. Not only were there mounds of paperwork for all this god-forsaken money, but then there's the house that finally sold after 11 1/2 months, the fact that we'd "gifted" my Dad's sister $200,000 in another State, the account that had been in MY name that we now had to transfer interest, AND the tax lady just happened to ask me just who was handling all of my Nany's taxes. Huh?
Nany had passed away in January of that year (2007), so there could be something to file. GREAT. So, more hours of phone calls and piles of paperwork. And during the process of trying to find out what may have been left undone in regard to Nany's financial affairs...I found out the checking account that my Dad's sister had been handling for Nany was still open. Oh, did I have fun trying to close that account. I got my brother to go with me one time and we got nowhere. They wanted to talk to our DAD...saying that he was the only one who could close it. I explained that WE were legally liable for all of our Dad's issues because he couldn't make those decisions. We showed them our P.O.A form. They didn't care.
It took a few weeks for my Dad to have a decent enough day for me to take him to the bank to close that account. And he acted weird and said some weird things about being held hostage. Well, they ASKED to talk to him, so haha!
Also along these lines...there were many, many times when I had set up my Dad's utilities or phone, etc. when he moved. Now, these places will let just about ANYONE set up service...to rack up a nice fat bill. But when it comes to cancelling service...oh no, they want to hassle you. Even though IIII set it up. Even though IIIII always wrote the checks. Even though IIII knew all the passwords. Oh yes, many times these places would ask to speak to my Dad ONLY. I warned them, then I'd put him on the phone.
Uh, yeah, he'd identify himself (usually) and sometimes he'd even agree that it was okay for me to close whatever account we were discussing. But he also always had some comepletely bizarre things to scare the hell out of them with. Like the day I was cancelling his phone at his Senior apartment...I put him on the phone after the girl INSISTED on talking to my Dad. Then Dad proceeded to say things like, "can you come over and ask this bastard in my chair to leave me alone? He's stolen my food, my wallet, and he keeps harrassing me and won't get out of my chair so I just sit on him".
I took the phone and said, "Are you quite done now?" and she said, "Oh my gosh, I am SO sorry." I said, "Hey, I warned you. Have a nice day".
Meanwhile, sister is saying things about how if we, (meaning my brother and I) mishandled "the money"...or, hint, hint...use it for our benefit and the money is ever gone, that they would never help us take care of Dad.
While I see the general point, that pisses me off.
If anyone knows just how much money it takes and what money comes in and out, it's me. IIIIII am not going to "clean my Dad out" when, let's be honest, I would be taking care of him anyway....money or not. And my brother? I, uh, kinda think that he would realize that if HE cleaned Dad out, that I would be immediately drop Dad off on his doorstep and then he'd have to pay for everything anyway. We're not stupid. We're the ones here seeing that you basically have to sell your organs to pay for one of these facilities for a month AND that we would be taking care of our Dad if there was no money anyway...my god!
It wasn't the accusation or thought that we'd clean my Dad out that that bothered me...because that is not going to happen. It was the fact that my sister said that she wouldn't help our Dad...? What if the money was stolen or who the hell knows what...they would hold that against our Dad and not help HIM because the money was gone? I dunno. These situations bring out the worst in all of us, so I am just going to let that comment go.
So...I set up CD's in DAD'S name, but with me and brother as joint account holders. The bank said that way we can turn them over when they mature or take the money out, etc. Fine.
But then the first CD's matured and I was hassled. I wasn't told about the fact that you only have 7 days to turn them over, otherwise they are reinvested for another term and a lower rate. Arrrgh. Yes, I'm NEW.
I continued to handle all the other banking and paying facilities, etc., and anytime I had questions, I was hassled by bank employees. They acted like I was there to somehow sneak money out or trick them into telling me something. But we were supposed to be able to be told everything and handle the money as if it was our own. But it didn't work that way.
The next term comes and I rolled the money into another CD. I'm hassled. They act like I'm some punk kid...I wasn't taking money OUT, I was reinvesting it in THEIR bank.
I spoke to another attorney. This guy says that our P.O.A. should be completely sufficient until my Dad dies...so he doesn't get why I keep getting hassled. Another $600 to hear that. He recommends that I consider putting the money back in my name if we don't want to do a Trust...which he says can sometimes cause problems anyway.
????
The CD's matured again and this time I put it in the checking because I was reading up on other banks that have higher percentage rates. I decide to leave it there until I figure out which one is better. Yet again, I'm hassled. The Banker guy helping me goes to talk to one of the tellers to authorize the deposit, and the woman starts saying how she can't believe what a large amount of money it is...asking did he check my ID...and what was up with my name...she said at least 3 times that my name "was weird". I start fuming. Banker guy sits down and I ask him if he thought that was a bit RUDE....and also why he didn't say something to her about that being INAPPROPRIATE. He freezes. I ask again...did he think that was rude that she was commenting on my "weird" name...and did I look unwashed or dirty or something...could I not have this amount of money in the bank? He said nothing. I told him I changed my mind about deposting the CD money back into the checking account...to give me the cashier's check, and that I would NOT be redepositing it with THEIR bank again...and that he could go tell his teller friend that she just lost their bank $200,000. I left.
I researched CD rates for a few weeks. Bank of America had better rates than Wells Fargo or anyone at the time, so I decided to go with them.
Next, we have all the medical bills. With all the ER visits and changes of addresses (even though ALL bills have ALWAYS come to my address), there is a good chance this money is going to vanish quick AND that bills will get sent to a wrong address. When facilities send Daddy to the ER for a $3000 dollar bandaid once a week, you have to unleash your inner bitch, ASAP. That's almost a month's worth of rent at one of these places...and it went to pay for a bandaid at the ER? Um, NO. Treat the money like it's yours and that once it's gone, the world will end...otherwise you WILL get billed and billed and billed for things that are completely avoidable.
And, as I started to mention, with address changes, stupid people make stupid things happen. My address has always been the only address bills have gone to...however...because there is obviously a real address that exists where Daddy would actually "live", things can get screwy. I don't have any idea how this could've been avoided, but several of my Dad's bills were repeatedly sent to the wrong address until it was sent to a collection agency. Another nightmare. By the time I would find out about this, usually by a barrage of sudden phone calls when they tried to trace my Dad's whereabouts, I had disgruntled, rude people yelling at me for not paying a bill. And, typically, these bills that ended up at the collection agency were the $35 ones. Well, of course! Because ALL of the $3000 and up bills sure as heck always found the right place to go to!
And, uhhhh...Hiding money: This, I will not fully comment on as to not incriminate certain people, but there are "ways" to hide money when, well, you just have to. I will use my Dad as an example.
I applied for the VA Aid and Assistance for my Dad back when he'd already used half of his inhertitance on assisted living rents. So, he had about $100,000 at that time. Figuring in the costs of his medicines, ER trips, rent and other costs, that money would be gone within the year. And he owned nothing else. Just that money was what he had. We had no secret stash of diamonds or bonds or gold teeth that could be melted down for cash (you think I'm kidding?). But they said to "come back when his money has run out".
Now, if someone were to not mind dealing with the tax nonsense, and were able to, say, put the money in their name, then Daddy would have been eligible for that aid and assistance. Had I known that, I would've done it...because, let's face it, that money is being spent on his care one way or another...and to "come back when it's run out" is ridiculous. He served his country, and he's in need of a good facility, so I do NOT feel guilty saying that they owed him that. But we didn't get it, so life goes on.
Same with Medi-Cal. If you own anything or have ANYTHING, and I do mean anything...they want to know and they want it sold or cashed in before you even dare to ask them for help. My Dad has never had any medical insurance besides what the VA would cover on certain things, so when you are faced with privately paying for facilities, you get screwed. If you are on Medi-Cal, Medicare, etc., you get a fair rate...private payers are like walking dollar signs to these places. From what I have heard from support group people, even lawyers, and now from my own experience, Medi-Cal only looks back about 3 months in someone's bank information. So, if someone were to, uh, safely and legally transfer some money, wait some time, then reapply, you might get the help you need. One warning about Medi-Cal too...if there is ANY money left in your loved one's name and they are receiving Medi-Cal, get it out ASAP. Medi-Cal absolutely WILL pursue anything left in "the estate", even if that "estate" only equals a few thousand dollars you could use for burial expenses. Oh yes they do. If there is a cent in your loved one's name, it will become theirs. Many a family has been blindsided by "doing the right thing" and leaving all the money in their loved ones "estate"...thinking that after all was said and done they have money left to pay for burial...then they find out that Medi-Cal already took it. Beware. And one of the most absurd things about agencies like Medi-Cal is that they even want to know if your loved one has pre-paid funeral expenses. They figure that it's reasonable for you to sell that before they help you...even though that will leave no paid funeral arrangements and can ultimately leave someone ELSE in dire straights or the State left to pay the expenses anyway. How does that make ANY sense? What we did was pre-pay for the burial plot in MY name with MY checking account and then did all the paperwork for the funeral arrangements and had the payment on hold until his death occured.
We all pay taxes, we all pay into the Medicare system, and too many people who are law-abiding, good citizens cannot get aid no matter what they have or don't have. So cover your loved ones ass, so to speak. To me, I had a real problem at first bending rules because I didn't think it was right...until I went to the Medi-Cal offices and saw that most of the people there getting aid had Denali's and gold "grill" teeth and full manicures...while we struggled to find out how to make every dollar stretch to pay for halfway decent care for Daddy.
Now, as far as legal advice, all I can say is do what you know is right, but talk to people who have been there before making major decisions. DO NOT take the advice of just one lawyer, and do NOT take the advice of one person who has been in your shoes. Research in books, online, ask people, and do not be shy in being finding out what you need to know. Be your own advocate and do what is right for your loved one.

Lewy. Guilt tripper.

2008-08-06T07:41:00.000-07:00

Didn't hear a peep from Dad until a little after 7am, which is good considering I didn't get to bed until 4:45am. And the 'peep' in question was seeing him flitter by my bedroom door...which is UPSTAIRS. He was walking into my 5-year-olds room...luckily she was already awake and in the next room with her brother or she may have been startled as well.
I was freakin' beat and I used my dark-circled eyes as daggers until Dipshit got up to help him so I could get up oh-so-slowly. I am in serious this morning.
Half a second later Dipshit's back in bed and says Dad's "fine". I let out kind of a growl and say NO WAY...sending him back to help Daddy down the stairs.
I mean, seriously, my Dad can't even sit down without falling half the time...how he gets up those stairs, I don't know...but I'm sure as hell not chancing him going back down the stairs alone. What then-husband was thinking, I dunno.
I get downstairs as quick as I could move myself and Dad's going in circles. I ask him what he needs and he says he just needs to get warm. So I take him into his room, and see his bed's a disaster. I remake the bed and he tells me how he's already tried to go to the bathroom but couldn't. He tells me he is SO thirsty and hasn't had a drop of water since last night. I help him put his shirt on, open the window for some fresh morning air, get him a cold water bottle, and he starts asking me...looking all hunched-over and sad...
Dad: "Is it a possibility that you can just forget how to go to the bathroom?" Me: "Uh-huh" (heart breaking into a million pieces and trying not to start crying)
Dad: "Really?"
Me: (clearing throat) "Well...yeah. Unfortunately the disease you have is making your brain forget how to do everything."
Dad: (voice cracking) "Oh. (pause) Well then I guess that's what it is because I can't seem to get my legs or anything to do what I want them to do. They won't bend or anything when I want them to."
Me: "I know. Your muscles are very stiff most of the time."
Dad: "Yeah. Uh-huh. So is it okay if I drink some water now?"
And his moment of clarity was gone.

When Lewy uses reasoning.

2008-08-06T01:46:00.000-07:00

Okay, so to back up a little, I left off Monday night and I was planning on giving Dad Benadryl to help him (us) sleep. He had been VERY restless and grumpy at the end of the day and kept dozing off, so I didn't get to give him anything until about 8pm again. I decided to instead give him a dose of his Xanax instead...to calm him and maybe (?) help him sleep. I am not a fan of these types of meds, but now that he's been off the zillion other drugs he's been on, I hoped maybe we could see just what effect it would have on him, and either continue with it, or discard it altogether (I've still got all his med bottles in case he ends up actually needing them).
Over the next couple of hours, he got REALLY grumpy. He was doing circles in the kitchen again, and when we'd try to ask him if he needed help, he'd blame us for ruining his pattern. Whatever. He finally went to bed at about 10 pm, a decent hour in my book. We went to bed too.
At 5:45 am, I woke up when my 5 year old got up and came in our room. The time jolted me, because I realized Daddy had NOT woken us up that night. Thoughts of him being dead rushed through my brain. How bad is that...that my first thought when we actually get some sleep is that he's passed on...?
I go downstairs and find lights on, crumbs everywhere, several empty water bottles, and even an entire (blue-colored) gatorade bottle empty (and spillage).
So he didn't really sleep, he was just quieter, I was zonked out, or both.
As I assessed the "damage", I headed to Daddy's room, and he was totally out...but alive. Phew!
Hours passed. We all were awake, had eaten breakfast, showered, gotten dressed...and Dad slept.
And slept.
I took advantage of the time and read.
And read.
And read.
Finally at about 11:45 am, Dad scooted out of his room dazed. He just stood there, staring at me on the couch, like he wasn't sure if I was real. I asked him if he needed anything...and he said, "Yeah, I'm starving." I said, "Well, I suppose you would be, you slept through breakfast and almost lunch!".
So he ate, and I hoped he'd take a shower since he wouldn't the day before, but he said he was going back to bed.
He slept off and on all day and didn't really stir much until about dinner time. Then-husband helped him get his showering necessities together and we heard the water run for approximately 2 minutes before it was off. That can't be good. I knew my then-husband wasn't "going there" with Daddy...and I thought I just couldn't either. Cleaning up bathroom accidents has already pushed me to my limit as it is. I'm going to have to call some of my contacts to find about hiring someone, or revisiting the skilled nursing idea. Daddy is a big guy and used to be quite overweight...and showering him...I won't get graphic, but the remains of being extremely overweight does things to your body...and, well, I am just not showering him. Not gonna.
Anyway...
For the most part, his waking hours were okay. We found out he'd somehow broken the pole that holds up his clothes in his closet, and he did a bit of wandering, but nothing too exciting.
I was contemplating what do to about the sleeping issue tonight. Clearly, the Xanax helped him sleep, but obviously too much, and that was the smallest dose. As much as NOT sleeping makes him (and us) crazy, I don't want him drugged or not being able to stay awake during the day. That's one of the things that really burns me about facilities...all the residents are so drugged that they basically stay unconscious...and when they are awake, the effect of all their drugs makes them too woozy to have any sort of conversation or real interaction with anyone...as if their disease doesn't already do its part in that department. I don't want that for him if it can be avoided.
At dinnertime (5pm), when I was making his plate, I decided to crush up the same dosage of Xanax in his food, and see if giving it to him earlier, and with food, would make any difference. Worth a shot.
He ate a big dinner and ice cream and stayed up until about 9:30 pm. He had a few of his hallucinations about that weirdo "string" he always thinks is coming out of his hands and got agitated with me when I said I didn't see it. There are differing opinons from everyone on what is more appropriate to do about hallucinations. I personally just try to change the subject. It's always come back and bit me in the ass when I've gone along with it...those are the times he seems to remember all too well...and then the next time when you don't go along with it, he'll say, "but you said last time that you did see it". Oh, Lewy.
Right before bed he called out (but didn't scream) for help. I was right in the next room. He was annoyed that we'd given him a lopsided bed (?). I tried reasoning that his bed was fine, and level, and he argued, "See...right there...one end of the bed was higher, and lopsided!" I was so tired and I just couldn't say anything. He just stared at me and kept saying it was busted. I said nothing as I folded a blanket. He finally let out a big "arrrgh" and then said that he guessed he'd just have to make it work then.
I guess so.
Thank you, Lewy, for finally trying to be reasonable, because I think I was about to argue back if he kept pushing the issue.
I came downstairs at about 10 pm before I went to bed to make sure he was in bed and he was...and he'd turned off all the lights, so I turned on the bathroom and hall light for him.
I heard a noise about an hour later and went downstairs to check and the lights were off again and he was still in bed. I left them off and went upstairs and to sleep.
1 am rolls around...noise downstairs.
As I walk slowly downstairs, I hear this awful sound...but it's totally dark. As I near the corner of the kitchen, I can see the faint light from his bathroom...but as I walk into the DARK kitchen, in the shadows...is Daddy...standing at the open cabinet, eyes closed, one hand holding a bag of chips, and the other shoveling them in his mouth so fast that, seriously, it was almost frightening. It was this fast paced crunching and whoooooshing sound...it was like, well, Gremlins. You know when the Gremlins are eating everything and they are eating so fast and so loudly...? That was the scene.
Dad cracked his eyes open just enough and saw me. He immmediately started talking really, really fast, almost stuttering...
Dad: "Well, so, I was, just, just, just...soooo hungry...and well, I had to go to the bathroom and well, I, I, I, just...couldn't find, I, I, couldn't, I didn't, I, I didn't make it...and well, you said not to scream, and then I was hungry...and but...but, I couldn't help it and there's a big mess..."
Me: "Huh? Mess? Where?"
Dad: (annoyed) "Like I said, in the bathroom. I didn't make it. But you said not to scream so I didn't...and then I was hungry."
Me: (crickets)

I slooooooowly walked toward the bathroom, totally afraid of what I was about to find. I'm still looking at my Dad (it was like slow motion) as he continues to barrel through the bag of chips, and I turn my head as I walk to 3 or so feet to bathroom. Holy crap. It's everywhere. Simply everywhere.

I look toward the sky and imagine that my Mom is saying, "I told you so! Haha!!! Neeeeener, neener neeeeeeener!!!"

As I'm cleaning up, he is now crumpling the chip bag over itself, like, to close it up...and not only does the noise make me think he's going to wake everyone else up, but it dawns on me that he probably didn't even wash his hands and he's probably got stuff all over his feet...and he's in my kitchen...the kitchen we prepare meals in...that my small children get their snacks from. I shoulda known giving him his own snack pantry in his room wouldn't keep our food uncontaminated. I shuddered at the thought. Kid locks are going on the kitchen snack cabinet and fridge tomorrow.

I get the chip bag from him and throw it out. He asks if he can help with anything. I tell him that not drinking so much liquid before bed would help. That spurs the thirst conversation allllll over again and I remind him that he drinks about 3 bottles of water, gatorade and a (caffeine free) diet soda after dinner time (on top of the other 4 or 5 bottles of water or other drinks he has throughout the day). I get nowhere in this conversation. He's trying to reason that he MUST drink when he's thirsty, and he MUST eat when he's hungry...even if it IS at 1 in the stinkin' morning.
Then, as I'm finally mopping the floor, he's sitting in his chair and says to me, "You know, what IIIIII think would be a good idea is that you wake me up a few times a night".
Me: What?
Dad: I think what would help this situation is for you to wake me several times a night so I don't do this...
Me: Do what?
Dad: (getting irritated) If you would just wake me a few times in the night to use the bathroom, then maybe I wouldn't make a mess in there.

(Because me being getting no sleep is reasonable, and because me picking certain times to go to the bathroom would make him go when I wanted him to go. Sure, sure.)

Me: I think what would actually help is you not arguing with me over everything, backing off the liquids before bed, and staying in bed.

Silence.

By the time I got everything cleaned, it was almost 2 am, and I am painfully awake. I went upstairs to grab something and then-husband asks me if I heard a noise. Uh, yeah, I sorta heard a fucking NOISE. I explain the whole scenario, how I've been downstairs cleaning for 45 minutes, and he seems to (not really) feel bad that he got to sleep through the whole thing.
And so here I am telling you all about it. And Dad (and Lewy) are sound asleep.

Sleep Shmeep. Who needs it?

2008-08-04T05:44:00.000-07:00

The day went okay today. Daddy pretty much just wandered all day. He sat on the patio for a little while, did his usual circles in the living room, and then-husband had to help him get ready for a shower again. It's new to him everyday now, and his rigidity is impossible. We have to bend his limbs for him several times a day to get him to be able to sit, or turn, or move. His brain is definitely shutting down. But it's so interesting that when the rigidity would be a NICE thing...like when he's getting out of bed every 20 minutes, he moves just fine.
In the evening, after the last two nights of very little sleep, I decided that I would give Daddy some antihistamine (one dose of Benadryl at 8pm) to see if it helped him go to sleep earlier than 1 or 2 am. Then-husband had a test that he needed to leave at 4 am for (and drive two hours to get to), so not sleeping could not be an option. Period. Dad's been off all of his other meds for a few days now, so I wasn't afraid of any drug-interactions...unlike all the craziness with the prescriptions he's been given for far too long. What I was afraid of was that it would have the opposite effect on him. My ESP was right on target.
Then-husband and I watched a movie downstairs and Daddy sat with us for about two seconds, then he got up and started wandering. Then he tried to bring a kitchen table chair to the living room, turn it around backwards and sit in it like a cowboy or something. I had to catch him from falling over...and this is not an easy feat, as my Dad weighs about 225 pounds and I am about half of that. Then Dad said he "needed to go cool off and get air" which we thought meant he wanted to go outside, so we said it was still pretty hot out...and he laughed at us as if we were just making excuses to ruin what he wanted to do again. He said he just wanted to go to his room, so WHY were we trying to confuse him? The nerve.
He laid down in his room for about a half hour until he started the peeking thing again. Peeeek outside the door, scoot inside. Peeeeeeeek outside the door, scoot back inside. Then he poked his head out and started saying loudly that we needed to come take care of the tub before it overflowed. This went on for a while and he was getting genuinely pissed off that we had "built his bed on top of the damn tub of water". How unbelievably rude and stupid of us! He was completely amped up and had NO grip on reality.
About the time we were done with the movie and were headed upstairs, Daddy came out and started doing circles in the kitchen. We asked if he needed help getting something and he very flatly said that he was just trying to get to his room (Duh! How could we NOT see that?). We pointed the direction of his room and he laughed again. He said, "Well, I KNOW that, just where the hell did you think I was going, anyway? But now you screwed the whole thing up and got me all turned around, so now I have to start over and it's going to take me even longer to get there."
Because turning around, going the RIGHT way and walking 3 feet to your room is JUST not an option. Sigh.
So we go to bed. Then-husband points out that I am the only one on night duty tonight. Really? You mean, like it usually is? Well that's weird.
Within minutes, loud banging was coming from downstairs.
To shorten this slightly, I will do a summary to cover the next 6 hours. About every 20 minutes, Dad rammed into the wall, fell off his bed, or walked into his TV (which is mounted high up on the wall). There was finally a brief period of time where I think he actually fell asleep, but then at about 4 am, our idiotic next door neighbors weiner dogs started going ape shit over god knows what. Daddy woke up and started screaming.
At about 4:30 and 5am, same thing with the dogs and Daddy screamed that people were trying to get in the house, that they were banging at the door and coming out of the closet. I assured him that we were the only ones there, and reminded him about the NO SCREAMING RULE. He said I just didn't understand.
We've had nothing but problems from the a-hole and his dogs next door. For the two years this guy's lived here, the first two dogs he had barked all day and night. A week before we knew Daddy was coming, I excitedly received my order in the mail...a sonic dog shutter-upper. I've mounted it at our upstairs bathroom window facing the side of his house where they come out of their doggy door and start wreaking havoc on everyone's sanity.
Last night the sonic thing didn't help because they were barking from inside the garage (an echo chamber of doom) and so it didn't set off the sonic blaster. There's a remote that I kept hitting that turns it on, but since they were in the garage, it helped very little.
On top of everything else, I will NOT have these dogs be yet another reason my Dad won't sleep. Not that talking to the guy will help, because he's this 20-something year old, stick-up-his-ass, white-bread boy who thinks he's black when he's drunk, and any attempts at reasoning with him in the past has been pointless. He's the idiot in your neighborhood who thinks he's "hot" and doesn't come outside unless his shirt's off...and he's the guy that only remembers to take his garbage out at 11 pm, which is also when he decides it's a good idea to tear up and stuff a year's worth of cardboard in the recycle bin...loudly. This guy says us being annoyed at his dogs barking could be remedied by keeping our windows closed. Yeah, this guy is FULL of common sense.
I did call the city about his dogs recently though when suddenly there were EIGHT dogs...3 adults and 5 puppies...all barking every 10 minutes. Animal Control came out and it sounded as if none of the dogs were licensed, which would mean big fines, but the freakin' dogs are STILL there. Maybe I need to call them again.
Anyway, at 5 am, I gave up on any sleep. The kiddies wake up around 6 am, so what's the point?
Another day of running on fumes.
Daddy ended up sleeping from 5 am to 10 am. 5 solid hours of sleep. Another record...but can we rearrange the TIMES, please? I made him breakfast and he went back to his bed and is asleep again.
I've notice from personal experience now, and from others' stories, that maybe a sleep aid can help...but it seems that people with this disease metabolize everything much slower and it doesn't take effect until everyone else is already ready to wake up for the next day. Tonight I will try the antihistamine again, but I will give it to him hours earlier.

Make Lewy go to SLEEP quietly.

2008-08-03T16:28:00.000-07:00

Though the first night could've been better, it also could've been the second night. OY.
I had called my sister and was on the phone upstairs. I'd only been up there for about 20 minutes and Dad started yelling. I called down to him downstairs and said we were upstairs and that I was on the phone. He walked away.
About 30 minutes later, he started yelling again, "Helllllooooo? What the Fuck? Is anybody HERE, or WHAT?", and as I walked down the stairs, I was getting off the phone with my sister. My Dad was SO mad. He was yelling at me about the fact that we (me, my then-husband and our 5 and 9 year olds) were ALL inconsiderate assholes...WHY weren't any of us downstairs? What were we doing? Was he not welcome there, or WHAT? is what he wanted to know.
With phone in hand, I said that IIIIII had been on the phone, to which he screamed, "For a whole fucking HOUR?". I said, "YES! For a whole hour!" (How dare I! I mean, really! What rudeness!). Then he wanted answers about JUST where the kids and then-husband were...and I explained that the kids were in the bath getting ready for bed. This apparently satisfied him and he stormed off...which really means he waddled off into the wrong room, almost fell over, looked around in confusion, and then stared straight-ahead while he ran his hand along the wall until he found his room. He did this all with such determination though...so I could tell he was really trying to get his pissed-off point across.
After the kids were in bed, we tried watching a movie...downstairs...within feet of Daddy's room. My then-husband wanted to watch UPstairs, but I saw no use in trying that when it wasn't "officially" bedtime and Daddy would probably just start yelling at us from downstairs anyway.
About halfway through watching "The Notebook" (suiting, I know), Daddy started learing out of his room every few minutes. He'd poke his head out, then quickly pull it back in. Then again. Then again. This went on until about 9pm, and by then I was just too tired to finish the movie anyway. We went upstairs and got ready for bed.
By 9:30PM, Daddy was screaming. That damn lightswitch had disappeared again. 5 minutes later, he had to pee and someone had moved the bathroom. Then screams for help with, um, well, he couldn't remember why. Then more screams that he was blind. Then screaming for water. Then screams of having to pee. Again.
By around midnight, I was fed up. Daddy was cursing us repeatedly and would NOT stop yelling. He was yelling about how we should just open a door and let him run away, that we were useless, that we thought he was a fucking idiot, that we were trying to make him look crazy, that we weren't helping him with ANYTHING. In my exhaustion, I am not proud to say, that I yelled back. I yelled that I didn't see anyone else in our family (my sister or brother...) here helping him, that no one in the last 3 years had let him live with them, that neither my brother nor sister were here cleaning up his pee all over the floor, and that if he insisted on continually YELLING, I was going to YELL back. He screamed that it wasn't HIS fault that someone 'kept moving the fucking bathroom and that he had to piss but couldn't'. I reminded him that he had drank a WHOLE lotta water and diet soda since dinner and that maybe it was a good idea to cut back on the liquids so he wouldn't have to pee (or think he had to pee) every 25 minutes. He started coming at me with his fist flying toward me as he was yelling that we all just think he's a fucking idiot asshole.
I yelled that he'd better get in his room RIGHT now, and then I stood there, quietly, with my arms crossed and eyebrow raised until he walked to his bed (I was trying to be firm with him even though I was actually scared that my 225 pound Dad was gonna whoop my butt right then and there).
He got in bed (at 1 am) and didn't wake up until 7am.
With the exception of the night before, that is seriously the longest he's slept or actually laid in a bed for over 2 years.
This morning he was very calm. He did a LOT of wandering, and needed A LOT of help with everything. Again, he didn't remember how to use the shower, and couldn't remember how to sit down. I literally had to stand him in place at the table, scoot the chair beneath him, and bend his body to get him to sit. He was just completely frozen.
It's about 5pm as I type this, and I am a little stressed at what the next few hours will bring. The last two nights have been extremely draining. I feel awful that I yelled at him, and as much as I know that most of this is Lewy coming out, I also know that my Dad has never been a very easy person to reason with. Though I know from experience that some of the things he says are out of frustration, what he says are STILL real words...and when those real words are being screamed at you at 1 am, when you haven't been allowed to go to bed and after not sleeping much the night before either, it's hard to reason with your exhausted self that you should just not respond or at least be a lot calmer than I was about it.
Please GOD, let there be peace and SLEEP tonight.
Amen.

The First Night is Over.

2008-08-02T08:03:00.001-07:00

The first night went better than I anticipated, but I still didn't sleep.
Then-husband and I were beat from the day of moving so we went to bed early. I was dead asleep by a little after 9pm.
10:45 pm came with screams. Downstairs, my Dad was yelling, I think as loud as humanly possible, "Hellllllllooooooooo? Helllllllllloooooooooooooooooo?".
I was on my feet and heading toward the stairs before I even realized I was awake. I've never done that before. It scared me, I must say.
We go downstairs and he was "lost" between the two feet of hallway that separates his room and his bathroom. He couldn't find the lightswitch. So he decided it was a good idea to scream bloody murder. I think I was calm and just showed him where it was and he apologized.
We went back upstairs.
I was so amped up that I tossed and turned until about midnight and then got online.
At about 2 am I decided to head to bed to try sleep again and I noticed that my Dad had turned on EVERY light downstairs. I went down and turned them off and I then noticed that he'd opened his blinds and curtains...BUT...he was actually asleep in his own bed. Miracle! Except for when we picked him up, he hasn't slept in a bed in eons.
I didn't hear a peep out of him until about 7am.
Glad someone slept. After he'd screamed, my nerves were so shot I couldn't come down from it, so I never did get back to sleep. I am exhausted.

Bringing Daddy back to our house.

2008-08-01T18:07:00.000-07:00

Everything went rather smoothly. I admit, I am shocked, actually. He was sleeping IN HIS BED when we got to The Stratford to bring him to our house again.
But...they had taken his chair out and shampooed the carpet...and did not put his chair back...which basically forced him to HAVE to use his bed. I'm a little peeved that they felt the need to shampoo the carpet before my Dad was even gone. Seems a little pushy and/or tacky. But whatever, we're outta there.
When we got home, we got everything out and sorted, and I started washing everything. I felt the urge to wash ALL of his clothes and sheets, etc...stuff in facilities just never smell right and I want a fresh start! We got him all set up, hung his fancy TV on the wall, and got him organized. He paced a bit while we were working. He seemed to be turned-around a little.

Will any place ever be good enough?

2008-08-01T10:53:00.000-07:00

So.
Dad moved into the Private Room at the Stratford. I was so happy I could barely contain myself. I was looking forward to what it was like when he was there before...I had a little time to rest for once, and I had peace of mind that he was actually being fed and given his meds and, hmmm, not being harrassed over intercoms...
But this time around something had changed. Dammit (shaking my fist at the sky).
Within the first week, I was called about 13 times...not by my Dad, but by the people that worked there. If they didn't get me at home, they'd immediately call my cell, which I ONLY use for emergencies. These weren't emergencies. It would be "to let me know" that Dad had bumped his elbow, Dad had an accident (didn't make it to the bathroom), or something else that they really didn't need to tell me right then or at all. Of course, if he had a new bruise, then yes, let me know so when I came in I wasn't wondering, but it never was.
Then I started getting phone calls at 2 and 3 am. Uh, NO. And again, NOT emergencies...Daddy wasn't on his way to the hospital, they were calling me at 2 am to tell me that he'd had fallen out of bed...but that he was fine. Uh, okay, then call me at freakin' 8 am! Maybe that sounds cold, I don't know, but waking an entire household of people for a bump...please.
Then they started sending him to the ER. Oh, here we go. I got bills for MONTHS just for the first ER visit...for a goddamn bandaid. NO, not kidding. He'd wandered into someone else's room, scraped his elbow somehow, and when a caregiver asked him what he was doing, he said he "thought" maybe he'd bumped his head. So, though they saw no SIGN of a head injury...no bump, no swelling, no redness, no word from him at an area that hurt...off to the ER he went...and $3000.00 later, that was one hell of an expensive BANDAID.
Then there were the Stratford caregivers. Some of them were the same from before, some weren't. A few are really great people and are definitely in the right career...they are compassionate and caring and try to use common sense before only utilizing "policies" that don't help anyone. They help us and don't make our lives harder. Unfortunately they are the exception.
The dementia area is divided...there are two little dining areas to keep some people separated...some get a little loud and rowdy at times, so I can see how having "separated" areas could be beneficial. Each side also has this long row of recliners in front of the TV's each side has. One caregiver would ALWAYS be sitting in a chair behind a recliner (a recliner that had a resident sitting in it), resting her head on the back of said chair...ASLEEP.
Another caregiver, who called me one of the times at 2 am to tell me about something completely ridiculous, wouldn't even make eye contact with me anymore after our badly-timed call. Apparently when someone gets called at 2 am, you're supposed to be AWAKE, perky and ready for pleasant conversation...? Uh, no, I will not apologize for being groggy and saying "what?" at least 3 times at TWO in the morning. Not only was I dead asleep, but I JUST couldn't wrap my head around the fact that I HAD to be called at that time to be told, "Hi, this is Annoyalita from the Stratford...you're Dad is fine, but he scraped his knee."
I replied, "Uhhhhh, okay...so wait, he's okay?" to which she replied, "Yes, he's fine". Back to me: "So...then couldn't you have called me at say, 7 or 8 am to tell me this?"...to which she said she was "just doing her job".
I had to have an actual conversation the next day with the Director about the fact that, no, it really was not necessary to call me in the middle of the night unless it's a real emergency. I mean, why the hell would we go against everything we believe in by putting my Dad in a facility and pay out the rear for care and false peace JUST to be woken up at all hours with stupid nonsense...? Hmmm. Me thinks we wouldn't.
So anyway, lots of little annoyances kept happening this time around at the Stratford. Some things were not their fault...like the fact that they must go along with the exact Doctors med. order...if that makes no sense it's because you haven't been there yet. When you get a prescription, clearly it (and/or your Doctor or Pharmacist) tells you what dose to take. And, usually they tell you if that dose doesn't work, to take more, or half, etc. In my Dad's case, he's always given some prescription that has the possibility of making his symptoms worse, to which, if that happened, we would change the dose or stop it altogether. If he needs to change dosages, it takes a ridiculous amount of time to do this. There are faxes, too many phone calls...and then if the Dr. even responds, it's more calls and faxes. Too much waiting when I could just change the dosage myself or stop calling in for refills! I am pretty well versed on on these insipid meds by now, and I use a pill-cutter like a champ. Facilities can't do that. There are too many regulations that prevent any sort of smooth flow to anything, and it really becomes more work for family members.
All of the residents of these facilities are on so many drugs, it's insane. Probably none of the meds are doing them a damn bit of good, but most of these people have been dumped off and no one speaks for them or the fact that their sleeping pill is actually keeping them awake or causing them to roam the halls all night. Then there are the drug interactions, the "possible" drug interactions, the side effects you can definitely expect, and the side effects you "may" expect. And then with my Dad, there is a huge list of drugs that he should NEVER take because of his particular disease. You can find this information everywhere, yet most Doctors are just pill pushers. They say that the benefits "probably" outweigh the risks.
NO.
I think I can say with confidence that my Dad on over half of the available anti-depressants, anti-anxiety meds, anti-psychotics, cholesterol lowering drugs, blood sugar stabilizers...you name it, he's taken it. Never have I honestly seen any of these drugs help him more than they hurt him. Even the "miracle drug" Aricept that he's been taking has "coincidentally" caused complete insomnia, more rigidity (Parkinson's symptoms) and an overall sense of doom. When I've asked his Doctors about this, they just stare. My Dad is a lost cause to them. He has a terminal illness, and all of these issues with meds are inconsequential, like...why does it matter?
Anyway, life in a facility is harder, not easier. The only people I've come across who are truly happy with how their loved one's life is like in a care home, are the one's who don't visit or are completely numb to anything really happening.
It's true that my health had gotten worse since taking all of this on, and that I have had to sacrifice time with my children and friends (the ones who stuck around anyway) to take care of what I think my Dad needs and deserves. I know that I should've maybe built up some sort of immunity to all of my Dad's complaints or my expectations...well, I don't know...I guess. I know that if I were the one with dementia, I would be heartbroken if my kids had to go through what I've gone through with my Dad...all the hassle, frustration, tears, guilt...and nothing really ever changed or made him happier anyway. I just don't know. It's a struggle to find balance. Maybe the people who drop their family members off are half right and I'm half right. Where is the happy middle ground? Where? Is it better to be selfish and go on with my life, knowing that he is in a facility, miserable and sad? Would I even be able to do that? How could I move on at all without guilt overriding everything, including sleep...oh, beautiful sleep that I have missed...when he is lonely in a facility with strangers?
BUT...how am I really doing anyone else in my family, or myself, any good by being completely burned out, exasperated beyond belief and unable to enjoy life...what little life I have, anyway?
All I know is that there's been no real peace in any facility he's been in so far. I fail to see how paying over $4000 a month but still receiving phone calls at 3 am, having to rush over, stopping everything I'm doing, dragging my kids from their lives and dealing with pissed off or lazy caregivers makes any sense. But does it make sense to bring him here, knowing that, yes, we won't be shelling out $4000 a month, but our lives will be 100% devoted to him and his hallucinations and needs?
I was still at odds with what was the right thing to do here, versus what is reasonable...am I really supposed to not have a life to make sure my Dad has a resemblance of one?
All I do know right now is that no facility we've found is good enough.
Some are so horrible that no living thing should be there.
Some have potential, but I doubt they will ever live up to it.
And ALL of them are failing to see that whether you are one of the family members who drops your loved one off and never returns, or you are like me and comes in probably too much...the decision to place someone in a facility is hard. REALLY hard.
Every facility is only as strong as the people they employ and most are sorely lacking in people skills, understanding or sympathy for the reality of the situations the residents and family members are truly in.
After far too much deliberation, and being sent to the edge of insanity, we decided to bring Daddy to our house again.
At the very least, even if it's going to be temporary, one thing I hope to accomplish is to detox him from all his medications. Once this is accomplished, we can see where Daddy really is in this damn disease. When sleeping pills chase away sleep even more so, diabetes meds are keeping his blood sugar dangerously low, the depression and anxiety meds seem to be about as effective as a candy bar...something has to give. No Doctor is willing to admit the drug they've prescribed is making things worse, and the facilities are not allowed to stop or change any prescription without the consent of the ignorant Doctors, so I feel this is a necessary evil to face....to, at least for the sake of getting him off all of these drugs...to bring him to my house in order to do that. Bringing him home, my God, the thought makes me nauseated...but I refuse to pump my Dad full of more drugs and keep him in a vegetative state so he's easier to deal with. He's been on and off soooooo many drugs over the past few years, it seems impossible at this point to even know what behavior is caused by what...is it the progression of the disease? Side effects? What?
While I am ALL for people taking medications that help them, I don't see how anyone with diseases like this are being helped by adding more drugs. There IS no cure. There IS NO wonder drug that really even alleviates symptoms long enough to be worth the trouble they cause.
Aricept can cause more symptoms than anything it can really help. I don't see how taking a drug with so many possible side effects is worth it when you might have an extra 10 minutes of clarity a day. If it was me, I would want nature to take its course. There is no quality of life anymore. Anxiety, paranoia, restlessness, and wandring rule the day and most nights. No drug has changed that. If anything, they've made things worse.
So detox here we come.
We've been frantically getting everything into place...setting up the downstairs rooms, dementia-proofing everything with locks and deterrents, and the thought crossed my mind too that he should have his own pantry of snacks in his room too. This, because, well, he snacks...a lot...and honestly...unless we are going to start washing his hands every half hour...ew...I just can't bear the thought of allowing my little ones to be sharing the same box of crackers with Grandpa when god only knows where his hands have been or if he washed properly after using the bathroom.
Ugh.
His room is all freshly painted and waiting for him. The downstairs portion of the house is ready. I hope. We'll see.

St. Satan's Assisted Care Facility.

2008-05-29T12:59:00.000-07:00

So, once again I got everything ready to move Daddy. The room Daddy was to have at St. Francis was getting new laminate flooring and they were going to paint and upgrade the fixtures. But, right off the bat, the day we were moving him in, there were outlets with loose hanging wires, the flooring wasn't even completely finished, the patio door didn't lock, the screen was hanging off, there were 3 cable outlets (one worked) and the shower head...dear god, that shower head was so disgusting and covered with god knows what...I took it off and marched it downstairs to the Administrator myself. She acted a little put out but agreed that it needed to be replaced, that they had extra and one of the workmen doing renovations would bring me one right away. HOURS later, we returned after taking my Dad to eat, and I noticed the "new" shower head. It had what appeared to be spackle, dirt and caulking all over it. Whatever it was wouldn't scrape off, I tried. I removed the shower head and took it back to Betty, the Administrator. Again, she was "put out", but said that the owner had just come in and he would just go get one at the store. Um, yeah, ya think? I also said that I expected the loose wires and everything else to be fixed. Apparently I am QUITE the Primadonna.
So we finally got Dad all moved in to St. Francis. His room was a good size, and he just had the one larger room and a bathroom this time. We thought that may help him not misplace everything. He was excited about the fact that the facility had a large outdoor grounds area, so he had plenty of room to walk himself senseless...it had an automatic fence for the cars to come in...they called it a "wanderguard" to keep the wandering alzheimer/dementia residents from escaping. Despite the initial problems with the lousy shower head and wires, etc., I was trying to stay positive that things would get better.
Within a few weeks, The Chair Man was back from vacation. Again, the caregivers and residents were having orgies. Dad said he was being cussed out daily by the caregivers. He said they'd tell him he couldn't leave his room. He said they'd yell at him. He said that people were talking to him through the TV and Nurse's Intercom.
But then "actual" things started happening...and I began questioning the previous incidents that appeared to be hallucinations. Daddy knew that at night, he took 5 pills. He'd call me and say he'd only gotten 3, so I called to make sure. Turns out they DID let his meds run out and "forgot" to reorder. A few times they didn't feed him...either didn't remind him to come eat or didn't wake him when he slept through breakfast AND lunch. Of course I complained because CLEARLY my standards are far too high, right? This is how I was treated...that I was overreacting. Clearly no one else really expects their loved ones to be fed or given their meds.
One afternoon, Dad said that Betty and Michelle, the Administrators, had "taken off". For whatever reason, this "delusion" struck me as extra-odd, and I decided to call the front office to ask if they were there. I did have a few things to ask them about...like the fact that no one ever painted or finished the floor or fixed the sliding glass door...it still didn't lock and the screen fell off daily. Betty and Michelle weren't there. Some new Med. Tech. said they'd left the day before without notice...left no notes about some of the resident's care, where keys were, nothing. Just took off.
A new Administrator came on board that week...and the way I found out about and met this Administrator, Gina, is quite a tale in itself.
One afternoon I had gotten home from errands. I was listening to my messages, and as usual, there were about 7 messages from my Dad. He was having serious hallucinations this day, so I was hitting delete without listening to them. I'd found that Daddy would have forgotten all about his daily traumas, but I didn't, and it disturbed me, so I deleted everything and just called him instead, knowing that he wouldn't even know what he said on my machine. So, there I am, I'm hitting delete over and over and just happen to push away from my desk while the final message continued to play...
I froze.
Inbetween my Dad saying it was really, really, really, reallllllllly important that he talk to me, there was a noise, a voice. I literally got goose bumps. I replayed the message at least 6 times. To be honest, my first thought was to question if my Dad had been right all along...what if all these people he saw were REAL...that they were ghosts or spirits...and that my machine had freakin' caught one talking to him?! But after each time I listened to it, literally pressing my ear up to the speaker with the volume up as loud as possible, I realized what it was. My Dad was talking, then there was a beep (the alert that someone is about to talk to you on the Nurse's Intercom), then a woman's voice was saying things like, "I'm the man in your chair! Look at your chair!"
My Dad was interacting with the voice, asking the voice where they were, to which they would answer, "Look at your chair! I'm in your chair! Look! It's bumping up and down!" He said, "Where? I don't see you!" and the woman just kept antagonizing him.
To say I was floored, my god...my adrenaline was pumping like never before. The anger building up inside me made me realize I am capable of murder. If the person who did this was in front of me at this time, they would have died a horrible death, or would have at least spent months in the hospital.
I phoned St. Francis, and this "Gina" answered. To say our introduction was less than stellar would be kind. I was mean. I was loud. I had no idea who she was and I was loudly explaining what I had just "accidentally" come across on my answering machine. She seemed horrified, so I calmed down a bit. She told me it was her third day as the new Administrator, and I tried to play the message for her over the phone. I ended up in the car within minutes and she called a meeting with the 3 caregivers on duty at that time. I was not nice. I was not calm. We called my machine from Gina's office and put it on speakerphone for them to hear. They all denied it, despite the fact that minutes before I got there, one of the caregivers admitted she knew what happened, but that, of course, she didn't do it.
I called the Police, the Ombudsman, and every reporting agency that dealt with Elder Care or abuse. The Police Officer initially took the report and recorded the message, but he would never return my calls after that. Not once. The local Ombusdman, to this day that I know of, did nothing. No charges went through. The caregivers weren't even fired. They ended up leaving on their own because I was there ALL the time now, many times a day at odd hours, watching them. And Gina was watching them. Clearly they didn't like working anywhere they were held accountable. Good riddance.
I felt impossibly horrible after this. What ELSE had happened that we didn't know about? Were any of his other hallucinations true? He had flat out TOLD me that someone had been talking to him through the Nurses Intercom. He TOLD ME...and I didn't believe him.
The owner, Baleir Dhillon, called me after this incident. He seemed genuinely apologetic, and he and and Gina promised that nothing like this would ever happen again, and they asked if I could please give them a chance to prove that. Knowing I was up against a wall to find another facility ASAP, I let him stay to see how it went. Surely it had to get better now, right? They would be on their toes and be ridding themselves of all the irresponsible, sarcastic, annoying caregivers, right?
Screeeeeeeeeeeeeeeeeeeeeeeeeeeeech!
That is just the sound of Satan's front door opening a little wider, so they get a good look at you while you walk through.

So. Over the next two or so months at St. Francis, his meds ran out at least 4 more times. Meds that he had to take every day...for diabetes, cholesterol, depression, anti-psychotics...some of these meds are such that, if missed, the effect/benefit can just stop. Or, you can have serious complications, side effects or withdrawals. More times than I can possibly count, he wasn't fed. I kept dozens of receipts for meals I had to go buy him when he'd call me crying that he was hungry...or I'd just pick him up and bring him to my house, or bring him food that I had cooked if he wasn't feeling well enough to get up. My Dad was saying that caregivers were being mean to him and that when he would respond, they would say, "What are gonna do, huh? go get your daughter to come teach us all a lesson like she did last time?", and that they would laugh. I brought everything I saw or heard to Gina's attention. She said she was doing everything she could do, but that she couldn't just fire everyone since it was really difficult to find any help at all.
I started believing almost everything he told me and questioned everything.
Other residents, because they saw me there constantly, started asking me if I could help them fix something for them too, and I also began bringing baked goods from home for people. I fixed door knobs, put batteries in smoke detectors that beeped for days or weeks...this place was a HOLE. My Dad's complaints got so bad that I started coming to the facility at odd hours. One time I came at nearly midnight, hopped the fence and came in through the back entrance so no one would see me drive in the gate. There were no employees anywhere. I went from room to room on both floors. Either the rooms were dark with the door closed or doors were open with no one in them or residents sleeping. I checked all the bathrooms, the usual smoking spot for the lazy caregivers...there was NO ONE working. NO ONE.
During this same time, right before Christmas, we had finally found a buyer for Nany's house. Oh, yes, all this time it had STILL been for sale...all this time, dealing with all this other crap, I was trying to sell a house two states away. I went through two real estate agents, bastard cousins going into the house and helping themselves to appliances, the roof leaking, the water heater exploding, water damaging walls and flooring that had to be replaced, finding out that the "someone" had filed a false claim on the roof AND had been mailed a check for thousands of dollars...oh and there's SO much more, but basically...everything that could go wrong DID. So, 11 1/2 months after Nany died, her house finally sold...and Daddy would get that money...so he had a little bit more to work with as far as finding a facility, but it still burned my butt knowing that there had been another $200,000 out there that could make his care situation/life so much easier. But life goes on.
So Christmas and New Years came and went with what became just usual behavior: drunk people in and out of St. Satan's. I tried to ignore it, knowing that he'd be out of there soon, and I was so freakin' happy about finally selling Nany's house, I really, REALLY tried to focus on the good. It's not as if ANY of the so-called agencies that exist to help elder abuse or neglect were doing a damn bit of anything about this situation anyway. NO phone calls were ever returned, even after the harassment over the nurses intercom. This system is a fucking joke. Unless someone DIES, they do nothing...and even then, it's not enough. Unless a relative is accused of stealing MONEY, nothing is done. All the poor, mentally and physically abused and neglected elderly residents sitting in their own filth, barely being fed, not being given their medications, being left in a hallway to rot in a wheelchair...they are expendable. They mean nothing. These agencies know that there is a never-ending supply of these people and that eventually they'll get around to helping "someone", but not until they feel like it. We were on our own, and I knew it.
I brought my Dad back to St. Francis on X-Mas after he spent the day with us. ALL over the front lawn were alcohol bottles. Two trashy looking men sitting in some 70's looking Trans-Am type of car were sitting in the car inside the PRIVATE parking lot. They got out of the car when they thought I was inside, but I watched them from the window since I was ALWAYS there and I had NEVER seen these guys before. They staggered out of the car and left their bottles on the ground next to the car. I told the first caregiver I saw, Tracy, who was really the only one who ever did any work or seemed concerned about anything or anyone about the men, and she was very upset. She then found the other caregiver on duty, who basically said she knew that these men were family members of a resident there...she wasn't at all concerned that they were rip-roaring drunk. Tracy just walked away when the other caregiver didn't share her concern. So I called the Police and gave them a description of the men and the car...right before they drunkenly drove off. I have no idea what ever came of that...when I told Gina about it, she acted like this was just another one of my "ridiculous" complaints.
New Year's day I came early to visit Dad, about 8 AM, and ALL over the front lawn were about a dozen beer cans. Litter was everywhere. I can only assume that the caregivers on duty the night before had their own little celebration. Nothing ever came of any of this either.
At this point, I was asking Gina every few days that I wanted the owner to call me. He didn't. For about a month and a half, I asked that he call me. Nothing.
In the meantime, we found out that a private room was about to be available back at the Stratford. I was ecstatic at the thought. Besides the fact that my Dad was constantly upset about having the roommate who ended up passing away the last time, the Stratford had been amazing. We had about a week until move in and I could NOT wait.
The last (prorated) month of rent had been due at St. SATAN'S, and for whatever reason, be it fate or complete coincidence, the check I had given to one of the caregivers to give to Gina never found its way to her hands (never was cashed either). She called me during that last week and asked if I had paid it or...?...since I was never late with a payment before. I told her I had given the check to a caregiver weeks prior...but after I got off the phone, I thought about it...and then told Gina that I had canceled the last check and would write a new one when the owner decided to call me. Gina said that wasn't fair. IIIIIII said "what wasn't fair" was all the harassment my Dad endured, the meds not given to him, the FOOD not being fed to him. She said nothing to that.
And...wouldn't ya know it...after nearly TWO months of basically being a pest with my requests for a call from the owner and no response...when I said I wouldn't pay the rent...he called me within 3o minutes!!!!!
We had a very heated conversation about all the things that occurred during my Dad's stay. All this idiot could say was that he had "put $400,000 into his facility"....and there is NO freakin' WAY that place had that amount of money put ANYWHERE unless they had buried it in the yard. When I continually pointed out all the things caregivers had done and said and how he was SO completely absent and neglectful as the owner of a facility that should be EXCEEDING the State's far too low standards...he had the nerve to tell me that I was RUDE and had NO idea what kinds of 'personal problems he was dealing with at that time'...that I had NO right to assume ANYTHING about 'his person' and that he was NOT absent or neglectful and that though we had been through some hard times at his facility, he had APOLOGIZED for that and I should just pay the rent and be done".
AHEM! (that was me clearing my throat for the severe tongue lashing that was to come)
To sum up, I basically told the worthless piece of crap that he was a slumlord and that he was not only NOT going to receive the final rent, but that he should consider JUST how lucky he is that I had not filed a LAWSUIT against him, AND held him responsible for all the meals and expenses we paid when we had to rush order my Dad's meds or for all the meals his incompetent idjits didn't give my father.
He said that I should come visit his facility again in a few months and he would "prove me wrong"...that I would SEE what a fabulous place he'd have THEN.
But apparently he agreed with me, 'cause I never heard a word about paying them again!
All I know about that facility as of now is that a woman from my support group placed her husband there after I pulled my Dad out and 5 days later he was DEAD.
I hope the place burns with the owner and caregivers inside.

Enter the Assisted-Living Facility.

2008-05-19T18:41:00.000-07:00

After an intensive search, exhausting all of my patience and time and faith in myself to care for Daddy, I found an assisted-living facility that didn't resemble an abandoned whorehouse: Paramount Park in Turlock.
The cost was astro-freakin-nomical. $3700 a month (of course now I know that is CHEAP as far as facilities go, which is just UNbelievable), which Daddy could afford for a while since he got the money from Nany's passing.
I was very upfront with the staff at Paramount Park about my Dad's symptoms and that he'd been diagnosed with some sort of dementia. The Administrators seemed confident he would do well at their facility, but of course, if he became too much to handle, he would have to move to the other end of the facility, which was the "dementia unit". The facility was really very nice, hotel-like. His room was much like a regular apartment...he had two rooms, like his Senior apartment...a bedroom, bathroom, and small living room. There was a small kitchenette where he could have a microwave and refrigerator. They would take care of all his meals, laundry, even meds. We'd been storing all his stuff from his old place at my house, so we moved it in. He was set. Things were going pretty smoothly.
But within a few weeks, the hallucinations started back. The Chair Man returned. The staff was having sex with each other. The residents (all at least in their 70's) were having orgies on a daily basis. Someone kept stealing his keys, his money...and his car...the one I'd sold quite a while back.
My visits became a daily thing again...sometimes more than daily. The calls, because he had his own phone, were too numerous to count. The nasty messages, the yelling, the urgent need to have to me come over, right then, and not a second later. Of course I'd go and find everything he said had been stolen right where it should be, or maybe just on a different table, but still in plain sight.
The management at Paramount started telling me he was "scaring the girls"...the girls, meaning the caregivers. I said "the girls" needed to get a different job then...because unfortunately this is exactly what came along with assisted living facilites...illnesses of old age...what's to be "scared of"? He wasn't violent, he was wasn't threatening anyone, he was just anxious about these DAMN people that he saw everywhere! "The Girls" were all barely 20 years old and looked scared of their own shadow to begin with. I thought perhaps they should go back to the Burger King drive-thru window where they belonged.
The facility started calling 911 and sending my Dad to the ER because of the hallucinations. Ridiculous...what is an ER going to do? The ER doctors, even after the 1st visit, were furious with the facility. They treated EMERGENCIES, not hallucinations caused by an incurable illness. One of the caregivers talked to me privately and told me there were other things going on there that weren't right, things I won't list here ONLY because they are heresay and I didn't see it myself...although I do believe she was being truthful and it wasn't pretty.
After one of the times they sent him to the ER, Paramount Parks Administrator told me they were refusing to allow my Dad back at their facility. Uh-NO. Oh, to be able to replay that conversation...if only I could. Long story short, I reminded them how they INSISTED they were fully equipped to care for my Dad...that I had asked if he needed to be in the "dementia wing"...but at their "assessment", their opinion was that he was able to live on the "assisted" side. Oh, I went OFF. And the ER Dr., this Hector Lopez jerk, was SO unbelievably condescending and basically denied ANY sort of care to my Dad, but they couldn't and wouldn't release him. Uh, how the hell does THAT work, exactly? After about 18 hours in the ER, no food, barely any water (yes, you suck Emanuel Hospital), and a few choice words later, Daddy was released, and Paramount Park DID allow him to go back that evening. Bastards, every one of them.
On the last trip to the ER, there was an actual reason for him to go...he'd "accidentally" drank peroxide. Daddy said he thought it was a bottle of water and was very annoyed that we thought he would purposely drink peroxide. My argument to him was this: what's worse...that he drank it on purpose knowing it was peroxide, or that he thought the enormous brown bottle of peroxide was water?
I got into the conversation with the Nurses at Paramount about moving him to the actual "Dementia Unit" portion of their facility. They told me they were not trained to deal with him. This was frightening to me. They advertised being equipped and trained to care for people with dementia's, alzheimer's, etc., but they couldn't handle my Dad? His disease was only in the beginning stages at this point...so I wondered outloud just "who" they accepted or were "able to handle" then? They actually admitted to me that "they preferred" dealing with residents that were "pleasantly confused".
Pleasantly confused.
Show me ONE person with any kind of dementia that stays "pleasantly confused" and I will show you this tree in my backyard I genetically modified to grow real money.
The idiocy is magnificent.
So the search for another facility began. Again.
And my search for more advice from a lawyer and/or financial people began. My brother had come with me to set up CD's for our Dad so he could gain interest and hopefully not run out of money. But everytime we dealt with people they acted one of two ways. Either they looked at us cross-eyed, I'm assuming because of our ages and the amount of money we were open accounts with...or they'd take one look at those zeros and say stuff like, "Wow, well, I can see that you are one of our executive clients" and practically drool all over the place. I wasn't shy with these people, I flat out said that this was NOT my money, I just handled it for my Dad, who they'd never see, so the drooling and fake fawning could stop.
I toured so many facilities I lost count how many I saw. I revisited a few I'd crossed off my list the first time and crossed them off again. Some places that advertised they cared for Dementia patients now said they didn't. Some acted like Dementia was the plague and said they didn't admit people with Dementia. Turlock Rehab and Nursing told me that they can't care for demented people, but I now know that at least half of the people in my support group (for caregivers of people WITH Dementia) have had their loved ones at this facility. Some places welcomed me to come visit their "home-like residences"...many were listed with a zillion gold stars and touted as "so great when my Nana was there"...and they were actually ghetto-riffic ratholes whose caregivers sat in a circle of cigarette smoke outside or looked like THEY needed to be "cared for". I was disgusted.
Some smelled like dog urine (Season's at Modesto). Some had people sitting in wheelchairs drooling on themselves in hallways, clearly neglected. Some had people sitting in wheelchairs drooling all over themselves OUTSIDE with flies swarming all around them (Lifesprings in Turlock). Some had caregivers so young I knew there was no way in hell they'd be able to handle much more than a frail little lady who just wanted to be served tea. Some had mostly foreign caregivers that seriously spoke so little english even I had a hard time understanding them, so I knew someone with a mental impairment would be completely lost in their mumbled words.
My Dad was "lucky" that his mother had passed and left him money, because there was no way any of us could contribute to the costs of any of these facilites, if I ever found another one I could even stomach the thought of leaving him at.
I found a support group in my area and got my brother to come with me the first time. I needed answers from people going through this nonsense. I needed advice from people who'd dealt with this...talking to financial people and lawyers was a waste. If you talked to 3 lawyers, you got 3 different pieces of advice. I didn't want their "facts and figures" and "what's supposed to happen". I wanted reality.
I came across the Stratford in Modesto (angels singing!!!!) It was this really nice, hotel-like residence with one "assisted" side and a side solely dedicated to people with dementia.
The Staff would take care of all his needs...meds, food, etc. The only catch was that he'd have a roommate because it was the only room available at the time. But we had to compromise. Daddy was against the idea, but we had to try. We told him it was temporary until a private room opened, which was true because he was first in line to get one, not that we planned on doing that unless he didn't adjust (everyone I had talked with so far had said they thought having a roommate was better for him since he tends to isolate himself constantly). The place was great...they handled his hallucinations and everything with ease. So much so that I never really heard about what he was doing unless I asked them. And they'd just shrug it off because they knew he was just acting like someone with Dementia. What? This must be Heaven! I felt like I was getting a mild break from all the madness.
But then came the GUILT. How could I have put my Dad in a home? What was wrong with me? Was he really that bad, or was I just remembering his behavior wrong?
Now, they only let Dad call once a day, but he was freaked out when he did. And when I'd visit, he was SO upset about the roommate thing, I just couldn't stand it anymore. Then his roommate 'went away' to get his meds straightened out because he'd gotten combative. Poor guy never came back, he passed away in the hospital.
So, Dad's roommate was now gone and there weren't any moving in yet, but Daddy didn't even want to look at the empty bed, knowing what it meant. His hallucinations, while they (finally) weren't bothering anyone else (like the previous insipid caregivers), they were bothering me. My Dad was also upset because this new place really didn't have a lot of room for him to walk, which was "his thing". He loved to walk now. It was his only outlet. And of course, the whole issue of him being "locked" inside was not going over well. Though this place was awesome and I was getting the first break in quite some time, I wasn't happy because my Dad wasn't happy. I wanted him to be able to have an area to walk outside. I wanted him to be at ease with where he was. And I caved. I was stupid. I let my guilt at the fact that he "wasn't happy" get the best of me.
Sigh.
I began looking at facilities again.
This time, out of exhaustion, I allowed my Dad to look for himself at the ONE facility left in my area that would even take him...that I could with any conscience let him stay in: St. Francis Assisted Living in Turlock. It was one of many I had crossed off my list twice because it really wasn't very nice. It was older, and in need of repairs. But this time around, they were doing renovations. This gave me hope...?
My Dad was happy about the place. With the upgrades, and what was supposed to be coming, I hoped it wouldn't be so bad. He'd be MUCH closer to me, so there'd be no commute to hear about hallucinations, it was gated but he had tons of room to walk on the property, and like the other places, they were to take care of his necessities...AND it was "only" $2500/month versus the $3800/month at the Stratford.
When I gave notice at the Stratford, the Administrator, Nicole, warned me that my Dad was never going to be happy...that I needed to look out for myself too and just let him be settled somewhere. Deep down, I knew that she was 100% right, but I am stubborn. I was sure I could make it work...and that having him closer would be better. I am just one of those people who is determined to find a way to make things work and I was NOT going to be defeated by a disease. I saw that half my family had died in the past few years and that I had gotten through cancer treatment myself, so THIS would not be my defeat. No way. Nicole WAS right, I knew this. And I really did love everything at The Stratford, but I just had to do this.
Although I felt like I was going to let him live in a place I really didn't like, he wanted to live there. He said he didn't need anything fancy (god only knows some of the dumpy rentals we'd lived in growing up) and he just wanted room to walk and have his "own room". Well, he'd have that at St. Francis, so I just...I dunno...had to try it to see if he could be happy somewhere.
We could make it work, right? I'd be close, I could check in on him daily, and he got to pick the place himself so he felt independent again...he'd be happy...and safe, right?
Wait, what's that?
Hear that horrible screaching? That creaking noise?
That would be the gates of hell opening.

Life After Mommy.

2008-05-13T21:41:00.000-07:00

Daddy started floundering after Mommy died. Big time. He didn't really seem to get how to take care of the rent or how to call about the utility bills. I watched him (try to) fill out checks for his bills. It took him over an hour to write one check. My Mom had done everything all along. He didn't even want to tell the landlord where they'd lived that he was moving out. He was too afraid, or didn't know how. Socially inept, I thought.
Though I never had any kind of close relationship with my Dad, I knew he wasn't going to make it on his own, at least not right now, and I was going to have to step in somehow and do something. He was saying all this stuff about how Mommy was haunting him. Her wishes were to be cremated and to have her ashes strewn "somewhere fun", which I hate to admit, we still haven't done (nowhere has been good enough). We have 3 separate containers with her ashes...one for Daddy, one for me, one for my brother. My sister didn't want any. Daddy had his container of ashes and was convincing himself that she was sticking around because she needed to be buried...that she needed a headstone and she'd keep taunting him until he got rid of her. He said he knew she'd keep coming in his room at night poking him, filling his room with cigarette smoke until we buried her.
I thought maybe he was in shock, that he needed to be with someone until he got things in order in his head. I told him he was welcome to come live with us. He sort of hesitated, but said okay. We helped him have a garage sale, go through Mommy's things, and get his life in order.
He moved in with me and my family within about a month of Mommy's passing. For the first two or so weeks, he seemed okay. Yes, it was annoying having my father living in my house. My father, who was never really much of a father...the man who, while I lived at home, seemed more afraid of me or annoyed at my existence than anything else. His presence, I admit, irritated me. I couldn't believe that, after all the non-committal fathering he did, that I was taking care of him, helping him. But it was the right thing to do, what I had to do.
Growing up, there were too many incidents I can think of where Daddy took the high road and guilted us kids into doing his dirty work...the adult work. When I was 13, when my Mom had her last breakdown, my Dad was a wreck. He let my sister handle almost everything...my sister who had already had enough, had furnished our house with the first new furniture my parents ever had with her own money...who had been taking the brunt of the lack of adult decisions longer than any of us. And then he had me forge my mother's signature to the Divorce Papers he never filed. Years later, when big sister was long gone and my brother had a few scuffs at school, my Dad said I should handle it, because I was "better at that stuff"...more like he just didn't want, or know how, to. So at 23 I was my brother's legal guardian and had to go to the school anytime there was a problem, which luckily was only a few times.
Funny how things work. And interesting how now, looking back, there was a pattern of irresponsibility on Daddy's part all along. A total disengagement from making adult decisons. I was convinced that this part of his personality, along with the fact that he never had any friends and isolated himself in front of the TV, was part of why he was degenerating now. That, and after losing my Mom...the person who'd taken care of his life thus far, he just crumbled under the pressure of being responsible for himself. Or I thought maybe it was karma catching up to him...that this was his lesson for all that he'd done to my Mom. Or maybe my Mom really was haunting him...maybe she really was in his room smoking and poking him, laughing at him? How the hell did I know? I've heard weirder stories. And to be honest, I wondered if he deserved it.
It occured to me that Daddy had gone from his Mother taking care of him, to my Mother taking care of him...to me. And now, with whatever this post-traumatic stress or mental thing that was plaguing him was...there was no way in hell he'd ever be able handle life on his own. One of us was going to have to help him. It kind of made me mad, but I knew we had to because it was the right thing to do. He was still a person, and a person in my family. I couldn't just watch him crumble, despite the fact that I was crumbling trying to shoulder all of this on my own. But, this was me...I am the epitome of the idiotic "fixer"/caregiver person...I think I can fix everyone. I thought I could fix people I'd dated, thought I could fix friends, thought I could fix the guy I married...so of course I thought I could fix things for my Dad! So far, I had fixed absolutely NO ONE, but hey...let's give it a shot!
During the first 5 or 6 months after my Mom passed, and all the stuff that I was doing for my Dad, I was also dealing with daily calls to settle all the hospital bills and Medi-Cal claims and all the calls to basically shut down my Mom's life...cancelling credit cards, finding out if my Dad was liable for her debts, and slowly going through her address book and writing notes to people I didn't know to tell them she'd died. This stress, compounded with my continuing health issues, a failing marriage to someone who'd been diagnosed with bi-polar, and taking care of two small children, was unlike anything I have ever experienced. Cancer treatment had been far kinder than this.
The exact amount of time is a bit of a blur now, but Daddy'd been at my house for a few weeks when he decided to go visit his Mom (Nany) in New Mexico. She was all alone since Papa died and he'd been talking (fantasizing outloud) about moving back to New Mexico forever anyway (dying to get back to the magical land of an all-day cinematic masterpiece and all-you-can-eat candy bars and malted milks for only one dollar!). So now, with my Mom gone and no one to stop him from being with his Mommy, he went. Nany had been chomping at the bit to get my Dad back there too. I think in the same phone call informing Nany about my Mom passing away, she was asking when he was "coming back to her".
But by the end of the first week with Nany, Daddy was dying to leave. Nany had always been difficult and it was as if he always fooled himself or got some sort of amnesia when it came to being honest with JUST how difficult his Mom was. We all loved Nany, don't get me wrong, but she was one tough broad to understand and get along with. My brother picked him up from the airport and Daddy stayed with him and his girlfriend for two weeks. Drove them bonkers. He insisted on doing their laundry, which meant folding my brother's girlfriend's underwear. Not something any of us want or need, ya know? I vividly remember talking to my Dad while he stayed with them because he kept saying how he was so cooped up at their house. I told him to go take a walk to the park they had...but he insisted that someone needed to stay and take care of their two dogs "in case they got into something". Any excuse to avoid the world.
Then Daddy came back to my house.
I had two children. They were 3 and 7 at the time...one was in preschool, one in elementary. I was still pretty fresh out of my own surgery and radiation, still reeling from Mommy's passing...hell, I was still reeling from Papa's passing a few years back to be honest, moving 3 times in 3 years, having a mother-in-law from hell, bi-polar husband, life in general and everything inbetween...I was just beat overall. Then we added Daddy to the mix and he was a full-time job himself. At first it was just little things, like Daddy would go to bed really late, yet would seem to be up at the crack of dawn clanking dishes, vacuuming, dusting, and generally making me insane. Many mornings between 4 and 6 am, I went downstairs, bleary-eyed, and said, "Do you really have to be doing that right this minute? It's a little early." I know he was thinking he was being helpful, but he was losing grasp at the "appropriate-ness" of certain things, like time. He never seemed to know what actual time it was.
He started telling us to come look at the people outside...people playing "the statue game". In neighbor's yards, there were tall green men that suspiciously looked just like the tall bush Daddy'd seen there the day before. There was a lady with bright rose-red hair, in the same exact spot the other neighbor's red rose bushes were. There was the 7 foot tall "shadow lady" that lurked in the entryway of the neighbors house across the street. And, of course, then the little kids showed up, my Mom started blowing smoke in his face at night so he couldn't sleep. Even people in my backyard were dancing at all hours.
It had been about a year after Mommy's passing that Daddy started saying he'd like to get "his own place". Of course he didn't know how, so I helped him. I didn't realize what was really wrong with him at the time, and any doctor visit I went to with him proved fruitless. One doctor said he was just depressed, despite the fact that depressed people don't hallucinate. I was asking his doctors if they thought it was even a good idea that he live alone...but they thought maybe he'd snap out of it, you know, since nothing was really wrong with him anyway as far as they were concerned...so we figured we'd give it a shot, helping him get a place.
After looking at many apartments, and considering he lived only on Social Security, I found a pretty nice, quite, affordable Senior Complex in my city. I would've lived at this place, it was really nice and well-kept. All the people who lived there were so friendly and warm, and everyone checked in on each other and tried to involve everyone in their gatherings. I knew he wouldn't socialize, but it was worth hoping something else inside him would snap and he'd make a friend or two. I got him all ready with furniture, got his utilities set up, daily necessities, food, etc. and he was set.
For about two weeks.

Then the calls began...and I had to go over there everyday.
The manager would call saying that Daddy was getting the other residents upset...he was insisting there were people trying to steal his TV, or car, or clothes, or silverware.
The Police were called when Daddy was screaming and running down the sidewalk because there was a group of hoodlums in his car when he went to get in it. They wouldn't get out and he was having an argument with them to leave.
Daddy started calling upwards of, seriously, 17 times a day sometimes. Someone had stolen his wallet again. Someone had taken one of every pair of shoes he owned. Someone rearranged his furniture while he was sleeping. There were maintenance crews on the roof all day and night, doing work on the air conditioning units. Tiny, dirty, hungry kids showed up asking for food. Daily I spent hours just looking for things he'd hidden from himself. When I dared to not be home to answer my phone, like when I was so rude and went grocery shopping or to pick up the kids from school, he'd curse me on my message machine, then call 5 minutes later to nicely ask if I'd seen his wallet. 5 minutes after that, he'd leave another message saying something like, "I know you don't give a shit about me but I thought you could at least answer your fucking phone!" In another 5 minutes he'd be crying, saying I was his whole life now, and that he wished I would love him back.
Then the Chair Man showed up. Oh, Chair Man...the bain of my existence for such a long time! I should have just committed myself to a sanitarium at this point, because he said I was an assholes "pretending" to NOT see what he saw...he said I was trying to make him look crazy. One Dr. I took him to basically agreed with my Dad...with me sitting there. This Dr. said she thought my Dad was just nervous after all the stressful things that had happened to him, and that she felt that maybe us kids were just "too busy with our own lives to be bothered with old Dad and were looking for a way to rid ourselves of him".
Saying I was furious is far from an understatement. What nerve to come up with such nonsense. I was my Dad's freakin' only advocate...I ran over to help him at all hours, I sacrificed time with my kids, dragged them with me most times when 911 was called, and had been literally doing everything for him since the second my Mom passed away. We'd helped him pay for many things he couldn't afford, bought him all the necessities to move, furniture, food. And if time was money, I'd easily spent millions. I was the only one trying to help my Dad, and THIS was what I got? Condescending Doctors with opinions based on what? Unfreakin' real.
After this, I looked for new Doctors. I did more research about meds and whether he even needed any, or was this just nature taking its course? I read everything I could about the types of dementia, Alzheimer's, Parkinson's, mental illnesses, and did searches about his specific symptoms. I kept coming across "Lewy Bodies", and from the symptoms it explained on every site I came across, my Dad's picture could've been posted right next to it. He was the poster boy for Lewy Body Dementia, no doubt.
In the meantime, the Chair Man was more active than ever.
The Chair Man was a man that could mold himself into the shape of Daddy's recliner. He was like a chameleon and could change his color too. Daddy tried putting a blanket over the chair, and Chair Man just blended right into it. Damn you, Chair Man! Daddy and Chair man had screaming matches. Daddy hit Chair man, hit him good. Knocked him out. Then Chair man tried hitting back but he wasn't fast enough. Chair man threatened to kill Daddy, so Daddy had the Police come to get rid of Chair Man. Thank God for the very understanding Police Officers that came, and the manager as well. They just tried to calm Daddy down.
Because I was having to drop everything and haul my small kids over to Daddy's several times a day now to find out what the latest drama was, the decision was clear: despite his idiot Doctors so-called professional opinion, I KNEW Daddy needed full-time help, or I was going to have to move far away and change my name and let my siblings deal with this. My kids were being exposed to things they shouldn't be and they were getting annoyed and scared by Grandpa's antics. They didn't want to go anywhere near my Dad at this point, and honestly, I worried what my Dad's delusions would make him see next...if my kids were even safe around him. I had no idea.
I had to be the bad guy and break it to Daddy that there was no way in hell he was driving anymore. I tried reasoning with him that he could have one of his hallucinations while driving and kill himself or someone else. I got nowhere. He said IIIII was the one "hallucinating" and that he'd get back in control of his life away from me one day and put me in jail for trying to make him look crazy. My brother tried telling him driving wasn't a good idea and that we were doing what was best and safest for everyone. But I was the evil one who'd taken away his freedom. Stupidly, I let Daddy promise me he wouldn't drive (he still had his keys and car), until a few days later he showed up at my house and asked me how he'd gotten there. He got agitated when we said we'd drive him home, so I told my then-husband to secretly follow him when he left. Daddy was all over the place. Then-husband said Daddy kept turning around, making crazy last-minute lane changes, u-turns, and it took him a really long time to get home. I called him when he was home and asked how the drive was, and he said with a snap, "Just FIIIINE, thank you Maam.". I told him what then-husband had seen and Daddy was not happy. We'd violated him. How dare we accuse him of not being a safe driver!
I wrote long letters about what was happening for the Doctors to read before we went to his now numerous Doctor visits. We had to get an official diagnosis, medication, something. Around this same time, I realized we needed to get Power of Attorney because Daddy was clearly nearing the end of making rational decisions on his own. This was just the beginning of far too much legal nonsense and wastes of time and money.
One of his VA Dr.'s gave me a list of his current conditions at one visit. To my shock, Daddy had actually already been diagnosed with "Dementia with nonspecific psychosis" almost 3 years earlier. Why didn't we know that? Did he know that? Did my Mom? How did they even figure that out considering my Dad never seemed to tell the Doctors anything besides answering the few Kindergarten-level questions they'd ask him?
We were having a hard time getting anywhere with his medical care. Because Daddy could sit calmly for 10 minutes at a Dr. visit, tell them what day it was and what his name was, they said he was fine. Fine? What about all the people? What about the delusions? What about the complete lack of common sense or logic that should tell him it really wouldn't make any sense that there would be a man on a horse painting his house? For crying out loud, people!
Daddy stayed living in his little apartment while we figured out what to do. I was over there everyday at least once, usually more. My first search for a senior "care" residence began. In the meantime, his hallucinations...the Chair Man, the constant calls, me going over there to find his apartment in complete disarray, him half shaved, in mismatched clothes, it was just too much to handle even if I was super-rich, on my own, single, with no kids and in great health. I couldn't handle this. No way. He was having some sort of monumental breakdown and nothing I did helped. Looking at all the facilities was overwhelming. They all claimed to be the best, give the best care, and it was hard to find anyone I knew that had any experience with facilites to get any sort of reference. A small handful of people had "heard about" a few places when their grandparents were admitted to one, but no one my age really had a clue where to look or what I should do...and not one had any actual experience in the decision-making process of placing a parent in a home. The few that had little knowledge about places their grandparents had gone to had these half-baked glowing reviews of what they'd "heard" about the facilities...and when I checked them out...oh dear God. Horrible, decrepit pits of despair.
Most of the friends I had in town started disappearing on me when looking after my Dad became a real-live responsibility. People my age were worried about manicures, pre-schools and the PTA. I'd never even had a manicure, the PTA was full of superficial, bored women with some sort of eating disorder, and I just didn't have the time or patience to be worrying about whether I could help sell enough soy candles to send the 6th graders to the cheese factory. Some sort of dementia was ruling my life on top of everything else I was handling, and I am not one to mince words with people with no priorities other than their bi-monthly root touch-up.
Tangent aside, after one too many calls about his hallucinations, someone where he lived had called 911. I don't blame them, but Daddy ended up getting admitted to the VA Geriatric Psych Ward in Menlo Park. It was supposed to be a temporary thing, about a one week stay, just to get his meds straight and figure out just what was happening. I had my brother drive him out there because I was not about to take the kids out of school and subject them to going to drop Grampa off at the looney bin over an hour away. We had NO idea what kind of place this really was.
I found out he'd been on and off a couple of different anti-depressants and anti-psychotics for a few years, unbeknownst to us. And since my Mom died, I found out he was getting mixed up about his meds...taking two doses or skipping them, then taking 3 days worth at a time. I only knew this after I'd started doing my own research online and took a serious interest in everything he was or possibly wasn't doing...that the disease I thought he may have would confuse him to the point of not knowing what to do or when. I read all about every medication he was on, the side effects versus the possible benefits, and it was startling. I started counting his meds and within days he'd be out, so I knew he was mixing his days up. I confiscated his meds and gave them to him myself. He didn't like that, and often argued that he'd already taken what I was giving him, or that I hadn't been there for days to see him. As if I even had a few hours apart from him at this point! We had no idea what was really affecting him...was it this dementia with psychosis we never knew about? Alzheimer's? Was he just crazy? Schizophrenic? This Lewy Body thing?
While in the psych ward, Daddy slid even further. They would let him call on a payphone several times a day and he was more delusional and paranoid than ever. I went to visit him and in one week, he looked like he'd aged 20 years. He had almost a full beard, and, if you knew my Dad, that is just unacceptable...he NEVER had facial hair. He also looked like he had lost at least 15 pounds and his face was sallow and sunken in. He told me they wouldn't let him leave his room, and that someone was beating him. He did have bruises all over him. Dark purple and black bruises everywhere. EVERYwhere.
I asked to see the room he was staying in. The refused to let me in. I questioned what was going on with his meds and when they would have them straightened out so we could bring him home? They said I wouldn't be taking him out, that they'd made him a ward of the State and they would make his decisions now...that he was too far gone. They were injecting him with Haldol every few hours. I asked about the bruises and they said it was from when he was being combative and they injected him with more Haldol.
Holy shit. What happened here?
First, Doctors treat us like monsters, as if we are trying to pawn off our Dad somewhere. Then they say there's nothing wrong with him, we find out he was already diagnosed with Dementia (but he's fine, they say)...but now he's a ward of the state because he's too far gone and we might as well pretend he doesn't exist to us?
I felt like I was being PUNK'd. This was not happening.What. The. Fuck.
Over the next week, I phoned every person and agency I could find, and no one would call me back. The Psychiatrist at the unit Daddy was in wasn't very helpful and discouraged us even coming to see him now. I'm sorry...WHAT??? I was told we should just leave him there, and forget about him for a while. I was NOT doing that. What the hell?
I had a monumental meltdown. My then-husband was telling me to just leave my Dad in looney bin. I was thinking that I may drop HIS ass off at a different looney bin on my way to see my Dad...I was pretty damn sick of his crazy crap too. I drove all the way out there the next day, and INSISTED my Dad be released. Of course, the Doctors didn't want anything to do with me anymore. I'd gone against their decision, and they were GOD. I was told I could have 'legal ramifications' for taking a ward of the State without their consent. Funny though, after I pointed out all the facts: that from what I'd read, people with Dementia shouldn't even be given any anti-psychotics like the Haldol they were continually injecting him with and that for some reason they refused to allow me to inspect my Dad's room, they backed off. I will never know what really happened there. I probably don't want to know. They had their Social Worker contact me to say my Dad needed to be committed full-time and she gave the names of some other psych wards I could consider. I said something to the extent of re-analyzing just WHO should be commited to that hellhole.
So, Daddy was sprung from the nuthouse, and we brought him home to our house. He didn't want to be at his apartment anymore and we knew he couldn't handle that anyway, so I gave notice at his place and he stayed with us for a while again.
Daddy's Mom, Nany, was not doing well, and had some sort of Dementia-like illness coincidentally at this time too. She had caregivers coming in her home 24 hours a day. She thought they were just new friends that liked to hang out with her and help her for free. If Nany had known she was PAYING for these people to sit with her, oh dear god, all hell would've broken loose. Nany had also declined rapidly after her husband's (Papa's) death. It was like something had snapped, broken in her brain that day...sorta like my Dad. She was very paranoid about people taking her things. Granted, there were many pieces of expensive jewelery missing, but she had hidden things from herself before and we had no idea whether they'd eventually turn up like they always did. Nany also had started hoarding papers she thought were important in shoe boxes she insisted on keeping right next to the recliner she 'lived in'. She wouldn't sleep in a bed, and she'd sit all day in her chair, and fall asleep in it at night. She'd put this fuzzy blanket over her head and sleep like that. She was convinced that some sort of "fuzz" from the carpet or air or somewhere was getting into her lungs and mouth. She was constantly trying to get rid of the fuzz.
I had driven alone with just my little kids to visit Nany in New Mexico after Papa died (before the caregivers) and I had to haul out 4 large kitchen-size garbage bags of expired or actually rotten food from her cabinets and refrigerator. And I had to clean her bathrooms from top to bottom. They looked like someone had decided to scrawl on the walls with poo. There was splattered urine or fecal matter on the cabinets, faucet, walls, carpet. Oh boy, and she was livid with me. She said, "Oh you just think your something else, don't you? Coming in here, taking over, throwing out all that food I paid good money for!" I assured her that I was going to use my own money to replace all the food I so carelessly tossed out. I was beyond pissed that the family members back there had done absolutely nothing to help her...they had insisted they were helping her clean and had been doing her grocery shopping once a week. The hell they were. The food I threw out had long been expired or was literally moldy, and it was pretty obvious that nothing was being cleaned, and hadn't been for quite some time.
But now that Nany had paid caregivers there helping her all day and night, we talked to Daddy about staying with her for a while. I really didn't like the idea of him being all the way in New Mexico, especially when I knew the relatives couldn't be trusted, and I knew Nany was gonna drive him nuts. But, I assumed there'd be no more rotten food or foul bathrooms to tend to, and there were 3 caregivers taking shifts with Nany that we could pay to keep an eye on him until we could figure something else out. Daddy decided he could help Nany if he moved there, and we tried to make him think he had made the decision himself. Neither my brother nor I could reasonably take care of our Dad, we already knew that, and our sister had removed herself from our family for her own reasons many years ago...not to mention she lived in Washington and Daddy said he was not about to live there (he hated the cold).
He was fine at Nany's for the first few weeks. Then the hallucinations began again. And the running into walls and falling began. Nany was driving him crazy. He said she was crazy, wouldn't shut up, wouldn't stop yelling at everyone, telling him he was worthless. He said the caregivers were having sex with each other (they were sisters, so I would hope that wasn't really true). He said they'd have all-day parties and there were people in his room, women getting into his bed. He was more agitated than usual with everyone. The whole issue was a nightmare to handle by phone in another state so we decided to visit to see what was really going on there.
My then-husband and I drove with the kids to New Mexico. We'd been paying Nany's Caregivers to take care of Dad too, which was stressful because all Daddy had was his Social Security check every month. No savings. No property, nothing. But they wanted more money, even though family members who randomly came to visit said the caregivers really weren't doing anything for my Dad at all besides occasionally redirecting him to the bathroom.
When we arrived, we found that Nany really had no idea who we were. I'd just seen her about 6 months before this, when she was her usual sassy self. But now, literally every few minutes she'd say, "Well, now, who are you again?" When I'd tell her, she'd say, "Oh, really? We have a Lainie in our family too, do you know her?". I couldn't believe it. Just like that. I didn't exist to her anymore. It had only been in the last 3 or so months that she stopped being able to use the phone, but I'd still call her, and the caregivers would give her the phone. She'd still talk to me and ask all the usual questions like she knew who I was. She'd just known me a few weeks ago, and now she didn't. Was this normal for dementia or Alzheimer's?
We went back home to CA after about a week stay and Daddy still wanted to stay with Nany in NM longer. He said they still needed his help but he wanted to get a bike to get a break from them sometimes. I called around to see who may have a 3 wheeler...I did not trust his balance for a regular bike. I found this snazzy blue 3 wheeler with a basket and bought it for him. What we heard from the caregivers after we left, that's all he did: ride that bike. Unfortunately he took a few falls, nothing serious, but he wouldn't stop riding it. Over the next few months, Nany declined quickly. She suddenly didn't know how to swallow anymore, and couldn't eat or move. She passed away January 3rd, 2007.
Knowing all the family drama that was about to unfold with Nany's passing...really long story there, but my Dad's sister, who lived in New Mexico with her 8 grown kids and theirs, and theirs, etc. were a bunch that my Nany (and especially Papa) did NOT want to get their hands on the house or anything else. These were the same family members that had supposedly been looking in on Nany when her house was full of poop and rotting food. I could only imagine what I was in for.
Papa had made some good decisons with money, so Nany had been left with a few hundred thousand dollars, and a house, and this would all now be our Dad's. My brother was going with me, and we discussed how we knew we were about to have to fight with all the relatives who would inevitably come out of the woodwork and claim love and family loyalty as their claim to it all. Oh and did they.
Because our Dad was the executor of Nany's Will, named as the joint tenant on the house AND on her bank accounts/CD's, and because we were his Power of Attorney given his state of mind, Nany's affairs became ours. Nightmare and a half. Daddy could not reasonably stay living at Nany's house, which he now owned (his first time being a homeowner!) because the family back there could not be trusted and he had no way to really take care of himself, so we were packing his things and bringing him back to California. In the week we were there for Nany's funeral, me and my brother fixed things in the house, got it up for sale, had the vulture relatives put post-its on the furniture they claimed was theirs, and ended up splitting half the money in the CD's with Daddy's sister. Though Nany and Papa strictly forbid it and the Will nowhere stated he had to, Daddy was guilted into giving her $200,000. That is $200,000 that I would have no problem with her having if she'd use it for herself, but she gave most of it to her unappreciative, drug-using and/or thief kids...who ended up getting the rest a few months later when she too, passed away. I guess in the end, it's "just money", and it's money he didn't have to begin with, but I already knew what it was going to cost to take care of Daddy...and him having that money would make it much easier to find a respectable, clean care home for him that had good people working there (if that existed). We had no idea how long his life would be, or if he'd outlive the money he'd have left. I know, I know, it could be so much worse...he could still have no money...but it infuriated me that after everything, all the things that the relatives stole from Nany...(we're talking hundreds of thousands of dollars in jewelery among other things)...that they ended up with even more. It's just not right.
Daddy decided he wanted to go visit our sister in Washington before coming back to CA, so we set him up with a flight there. He stayed about 3 weeks at her house while we looked for some sort of assisted-living situation here in CA. He seemed to do okay while at our sister's house...she said he basically just wandered around and had to be told where things were all the time, but by this time, we were noticing a pattern...that he was always "okay" for the first few weeks in a new environment.
From all the research I was doing online or in books, I was absolutely convinced that Daddy had Dementia with Lewy Bodies. I made him an appt. with a new Dr. when he got back from Washington, and planned on getting this mess straightened out.
In the meantime, I was dealing with a real estate agent in New Mexico via phone, stupid relatives who'd gone in the house and stolen appliances, then filed a false insurance claim, and I was talking to a lawyer about getting all Dad's financial nonsense in order. Literally everyday I was on phone for hours. I never imagined all the crap that could possibly happen. And this was just the beginning.

The late 1980's and beyond.

2008-05-13T19:56:00.000-07:00

By this time, Daddy had been sober for a while and things in our house was much more calm. Though our mother continued her drinking and smoking, Dad remained "clean"...a nervous, anti-social, TV-obsessed fiend, but clean. My brother was pretty young during these years, and our older sister had long since escaped. My recollection of these years was that I slowly realized that my Dad had actually been the source of much of our misery, not our Mom...who was used as the scapegoat for our misfortune all along.
I think it was somewhere during Daddy's first "sober" years that he started having the night terrors. He would scream and curse and hit the walls during the night. He and Mommy were already sleeping in separate beds by now...Daddy in a hospital bed obtained by the VA after a few surgeries he'd had on his neck, to remove his gallbladder, these really bizarrre "cysts" he started getting all over his body, and a host of other issues. He had gained quite a bit of weight too, and had been diagnosed with Type II Diabetes. His favorite pastime was TV. Hey, look, it's 6 AM and Dad's in front of the TV. Hey, look, it's 10 PM and Dad's still in front of the TV. He was all about TV. All day and night. Well, that's not entirely true. He'd glance at old movie books sometimes, do yardwork on weekends, and do a quickie dust and vacuum job riiiiight before Mommy would get home from work...but other than that...TV.
Somewhere during this time, can't remember when exactly, Daddy got injured at work and went on permanent disability. He'd fallen through a roof while on the job at work...he'd worked for many years in Heating and Air Conditioning, and this injury was the end of that.
My parents rarely fought anymore after this for some reason. Occasionally, when my Mom would get unusually rip-roaring drunk (her liquid courage), she'd start spouting off truths about Daddy and antagonizing him about his weaknesses. We all got on Mommy's case about her drinking and smoking, but the way she saw it, it was her only pleasure in life. She had no intention of giving these vices up, so we dealt with the occasional outburst from her. Honestly, I didn't mind it so much, because what she said was absolutely true and she needed to get it out somehow, I suppose. Mostly she got drunk and quietly went to her room and fell asleep, while Daddy was in the living room eating and watching TV.
Other than spending every single Sunday with Nany and Papa and going to work, my parents hardly spoke, and spent their time in separate rooms attending to their separate addictions and social backwardness. They had no friends, and I do mean none. My Mom had a few people that she joked with at work, but there wasn't even one person that ever came over or whose house we visited. Well, once when I was 7, we visited some couple they knew (although I have no idea what happened to those people after that), and one other time we went to some lady's house that my Mom worked with to make tamales...but does two times in an entire lifetime even count? Those acquaintances were never even spoken of after those occasions.
In 1997, we got news that Daddy's biological father had passed away. This was the first I'd even heard that his Dad had even been alive all these years, so I was stumped, and it barely registered as a glip on my radar. We'd never met the guy, and no one had ever really talked about him except in passing that he had existed at one point. But, I remember Daddy having more night terrors after this, so for him it was clearly a major trauma. Whatever unresolved issues he's had with his Dad and all of life's other issues came to life at night.
Also in 1997, Daddy's Mom and Papa moved back to New Mexico after nearly 30 years of living in California. My Mom was definitely relieved to have some peace with their move, and maybe Daddy was too...but he seemed to also see it as a void in his identity...it was almost as if because he didn't have someone constantly telling him when and where to jump, he was lost. Though we all loved Nany and Papa, Nany was just, I don't know how to put this mildly...she was a pain in the ass. Sorry Nany, but I think you now know you really were.
During the next year I became quite close with my Mom. She had eased up on her drinking and seemed more at peace...maybe having Daddy's Mom hundreds of miles away was calming to her...she was much easier to talk to now. I was out of the house, married, and was about to start my own family. Me and Mommy talked almost everyday, and I'd hear all about how Daddy was a thorn in her side.
By 1999, though, her stories started including how Daddy's night terrors began evolving into actual sleep-walking events where he'd run through the house searching for "the kids" that were harrassing him in his room. She'd tell me how some nights she'd hear a bunch of commotion down the hall and she'd find him dazed and using the clothes dryer as the toilet. He'd punch holes in walls. Start singing in his sleep. Scream. Yell for help. He was driving my Mom completely crazy, and she clearly never got any rest. And, not that I thought she was lying, but I admit that I thought she may be stretching it a bit because I knew they just couldn't stand each other. Around this same time, we found out that all those years of smoking finally caught up to Mommy. She had lung cancer. Daddy really didn't react. Mommy went through the removal of one lung, chemotherapy, lost her hair (I shaved her head when it got thin), and generally became very weak from the whole ordeal...and Daddy just, I dunno, stayed stoic about the whole thing...during the day. At night, when Mommy clearly needed to be sleeping, Daddy's anxieties woke up and he'd explore the house and swing at things that weren't there. He'd have fist-fights with people, lots of people...in his bed, out the window, knocking at the front door...all people who, of course, weren't really there.
He also started having episodes of really low blood sugar. Quite a few times his blood sugar dropped to the 50's and 60's and Mommy would call and say he had lost his damn mind...that he was now talking about "the people" during the day...the people that only he saw. We didn't know for sure what was causing the low blood sugar (although later, while looking at the side effects for all the drugs the VA had been giving Daddy for anxiety, I think that may have been the cause).
In 2002, we got word that our Papa was expected to pass. He'd had cancer a few years prior and had lived well beyond his Doctor's expectations. Daddy had flown to New Mexico where Nany and Papa had moved back to, and me (pregnant with my daughter), my then-husband, Mom and son (who was 3 at the time) drove by car, hoping we weren't too late. Though Papa didn't come along until Daddy was an adult, I know that Papa was really the only father figure my Dad ever had. Papa's death affected many of us in ways I think we never could've imagined, and I'm sure this was just the first of many issues and death's that would irrevocably speed-up Lewy's arrival.
When I now think back about turning points in my Dad's state of mind, one incident that always sticks out in my mind is an afternoon when Mommy called me and said Daddy was talking about how she'd ruined his singing career...that he would've had a lucrative career as a famous guitar-playing singer if it weren't for her. The reality was that Dad really couldn't carry a tune to save his life that I know of. She had him test his blood sugar and it was in the 40's...which can, from what research I've done, supposedly cause brain damage? I called my brother who lived closer to them at that time...to tell him someone needed to go see what the hell was happening ASAP. My Mom had called 911...and had to do it slyly because Daddy was completely paranoid that she was trying to kill him. She called me and had him get on the phone...and she had to convince him that he hadn't heard the phone ring because of his singing...that IIII had been the one that called them because he was suspicious and asked why I'd want to talk to him. He acted really odd on the phone and would go back and forth from asking what I was doing to humming a tune that he'd just "written" himself. The ambulance finally came, and my brother had shown up by then. Daddy's blood sugar was at 34 (!), so they gave him some glucose to boost him up quickly...and his mental daze improved...but something definitely triggered a change that day because his delusions got worse after that.
At the end of 2004, I was diagnosed with Thyroid cancer at the age of 32. This, after quite a few years of Thyroid disease and knowing something had been seriously wrong with my health. I had gone from Doctor to Doctor, being ignored. After all was said and done, the Doctor that diagnosed me said going by the size of my 3 areas of cancer, I had probably had it for a good 5 years. Jesus. I look back on this part of my life in amazement of the ridiculous crap that was going on. My health was crap (despite never smoking, didn't drink, and I was a vegetarian...), my Mom went through cancer treatment, my marriage was in a state of "what the hell did I sign myself up for here?", and I was watching my fairly young parents fail before my eyes. Shit, and I just remembered that my sister and I weren't even on speaking terms at this point because of some stupid e-mail she'd sent. (rolling eyes)
Anywaaaaaay...my parents came to stay with us after my cancer surgery and during my radiation, so my then-husband could go back to work. My Mom had healed up fairly well after her own surgery, but she just wasn't the same. She was really tired and the arm on the corresponding side that her lung was removed was weak. Dad was just, for lack of a better defintion, "not there". He didn't say much and seemed to just be irritating my Mom with his uselessness.
Shortly after all my treatment, my then-husband and I decided we were going to be move closer to my parents. I wasn't doing that well, and I saw that both of them were failing. We found a house farther north, closer to them. While waiting for our house to be built, we moved to a rental. My Dad insisted on helping us move. He got lost driving to our house, and was having a lot of problems with balance. Quite a few pieces of furniture got ruined during this move because he'd lose his balance and stumble, dropping whatever he had in his hands. It was like there was a button for the aging process and someone had hit "turbo". When I'd talk to my Mom on the phone during this time frame, she had a horrible cough again...like the one before she was diagnosed with lung cancer...but she kept saying she was fine. Dad was just 'out to lunch', blissfully watching the days go by in TV land.
The month after moving, I drove with my then 6 and 2 year old to see Mommy...it was the day before Mother's day. She didn't look like my Mom. Not to get too graphic, but her entire head and face was swollen, she had a terrible cough and could barely breathe. She couldn't get out of bed. I asked my Dad why he hadn't taken her in somewhere and he was completely clueless that anything was even wrong with her. I knew something was wrong with him. He had this expressionless look on his face, it was almost droopy. He'd talk and his mouth would move, but he had no expression, like all these Hollywood freaks with botox-filled faces. When he wasn't talking, his face fell even more so, like a cartoon frown. I
called my brother on my drive home to tell him what our Mom looked like and asked if he could please try to get Daddy to take her to the Doctor. Everything I had tried failed. When I'd been there, I tried to convince them both she was seriously ill, but they wouldn't budge. I think my Mom knew she couldn't be helped and was just too tired to deal with it. She also didn't have health insurance, so I know she didn't want the headache of what it would cost to go in, considering they were broke.
My brother convinced them to go to the ER. She was immediately admitted to the Hospital. After a few tests, we were told she might have two weeks to live...the cancer was not only back, but had basically spread everywhere. After about a week in the hospital, she was sent across the street to the Rehab/Nursing Center where they did Hospice. My older sister came to California from Washington and stayed with Daddy while this was going on. I drove daily to see Mommy and to make sure I said everything I needed to say to her. While our hearts were breaking, Daddy would sit in a chair in Mommy's room, saying almost nothing. He seemed totally unaware.
My sister, who was still not speaking to me at the time, was the one who called me on the evening of June 5, 2005, saying the facility had called to let us know Mommy had passed. It was a quick, fairly "informational" call. My sister said Daddy was oblivious to the news and asked if he could go back to bed.
Lewy had moved in, hung drapes and artwork, and had no intention of being evicted.

A Step Back In Time.

2008-05-13T17:54:00.000-07:00

Before we go anywhere else, I must explain where this might have begun, and who Daddy was before all of this, so these first posts will serve as a bit of history into "what was going on before we knew about Lewy".
In all my 36 years, I remember Daddy being a little, well, "off". Even as a small child I remember thinking Daddy was sort of weird. Whether it be his random conversations in pretend Spanish or the fact that he fixated on, "when I was a kid I could get a candy bar for 5 cents", he just, I don't know, never seemed to fully grasp reality. Even when I was young, I saw him as immature, and "out there" which is huge, I think. He was never very communicative with any of us, and the rare conversations we did have, that he had any enthusiasm in anyway, was about his past and the mere pennies he insists he bought it with. "I remember when I could go to the movies, get popcorn, candy AND soda for 50 cents". Tales of paying a dollar to spend an entire day at the Cinema, and afterward stopping at the local soda shop for a malted milk, my god, it was all he could think about. His past life in New Mexico was all he dreamt about going back to. I don't remember him ever really speaking about his present...his life with us...with such technicolor fondness.
Daddy was the oldest of two children. He was born, and grew up in, a very small town in New Mexico. His parents split not long after his younger sister was born and his mother went on to remarry 5 more times. Yes, I said 5 more times, for a total of 6 husbands. His biological father moved on, remarried and had 5 more children...and had limited, then no contact with Daddy in the years after his split with Daddy's mom. From what little we know, most of Daddy's new stepfather's were abusive in some way, and his mother was also a very domineering woman...a woman who would have a pretty firm grasp on Daddy until her death at the age of 91 in January of 2007.
Right after High School, Daddy enlisted in the Marines, supposedly to prove himself...that he wasn't Momma's little boy anymore. This was during the Korean Conflict, and his stint as a Marine didn't last long. From family accounts, he was having some sort of "mental" issues and was discharged...honorably, but discharged nonetheless. He never elaborated one way or another, so I truly don't know the whole story about that. When he came home from the Marines, the girlfriend he'd had before enlisting had given birth to their child...a child, and pregnancy, he apparently knew nothing about. Relatives say Daddy was already a changed person when he returned from the Marines...more skiddish, paranoid, easily distracted and heavy into drinking...and then his girlfriend tormented him with the news she had indeed given birth to a son that looked just like him...and had, by the way, already given him up for adoption. Word is that Daddy's mental state deteriorated and he began drinking even more heavily and got into many a bar fight. Sometime later this same year, Daddy moved to California with his Mother and her 6th (and last) husband...who was our beloved Papa, the only grandpa any of us knew. They moved from New Mexico to Citrus Heights, California into a duplex next door to some young women who had moved to California from Minnesota, and Daddy began dating one of these girls...our Mom.
They dated for a short time and then married in April of 1960. According to one of my Mom's sister's, Mommy thought Daddy was a handsome, charming "man of the world"...she was a naive girl (the youngest of 11) from Minnesota, who had really never been anywhere, so Daddy was really "something" in her eyes. Supposedly, in Daddy's "day" (which was in High School before enlisting), he was quite the ladies man and had girls falling all over him, and he played that role to a "T". From what I know, most of my parent's first few years together were spent doing a lot of partying, drinking, etc. They didn't plan on having any children.
And then...surprise...their first daughter was born in 1963. By this time, both Mommy and Daddy were alcoholics and Daddy was already absent from their marriage and had extra-marital affairs. For the next several years, both of them dealt with mental health issues, alcoholism, and clearly couldn't decide whether they were going to stay together. During their fights, Daddy always ran back to his overbearing Mother, which caused even further problems in my parent's relationship. Mommy always had to compete with Daddy's Mom for attention. Oh, the never-ending saga of the dreaded mother-in-law!
In 1972, their second daughter was born...and that's me. By the time I arrived, Mom and Dad already had a relationship of convenience and obligation, Mommy had been diagnosed with a mental disorder and Daddy was guilted by his Mother and Papa to stay and take care of her...and the two kids he now had and didn't truly want to be bothered with. More years passed...more fights, more alcoholic rages, and more of Daddy running to his Momma and never really acting like an adult who was responsible for anything or anyone.
In 1978, their 3rd child, a son, was born. The third child of an alcoholic, mentally unstable couple who never wanted any children. How one "accidentally" has 3 children, I don't know, but I do know that my Dad's Mom blamed my Mom for not getting her tubes tied after the first 'accident', and my Mom said that my Dad could just as easily get HIS tubes tied. Nany said that "real men" don't get vasectomies, and shouldn't be expected to. OY. Momma's little boy.
Mommy said Daddy questioned the paternity of every one of us and that if he even dropped her off at the hospital, or showed up to see her (or us) afterward, she was "lucky". I remember the day Mommy had my brother because I was 6 and we were grocery shopping when her water broke in one of the aisles. I remember Daddy saying something to the effect of "finally having a son, someone he could be proud of and actually do things with". Unlike us pesky, useless girls...
In the years to come, we grew up with a Dad and Mom whose relationship was rocky at best, littered with calls to the Police and/or to Nany and Papa to come pick us up when they'd be drunk and fighting. Mommy's mental status was always called into question and we thought Daddy was the stable one. Well, that's what he told us. It was always thrown in our face that Mommy was crazy, and that we should trust Daddy...he was the one who would take care of us. But that's not really how things really were. With each episode Mommy had, Daddy would turn to his Mom and Papa. But as we got older, we got to take care of things. One of the last times Mommy "flipped out", I was 13, and my Dad came to me to make phone calls, and to forge Mommy's name to divorce papers (which never went through because he didn't file them). It took us well into adulthood to truly realize that, yes, perhaps Mommy had some emotional issues, but that maybe Dad's complete lack of responsibility and ease in pawning off everything on her or someone else (including us) could make anyone act out or scream until someone called the men in white coats. The second Mommy got back from wherever she'd go, everything was back on her shoulders once again. I wasn't all that close with my Mom until I was much older, and she didn't interact with us socially much, but I know she did the best she could, and overall, she was a sweet mother and loved us the way she knew how. I learned plenty by just watching her quietly...cooking and sewing...and I ate up all the little bits of conversation and insights she gave me.
Daddy was pretty absent as a "father". He wasn't one to ever give us advice or tell us what was right and wrong...we learned that on our own as we went along...or from seeing what they did and deciding not to follow in their footsteps. Mommy was, despite her drinking and problems with Daddy, a pretty loving Mom. She tried, I know that anyway. She was diagnosed with Manic Depression (now called BiPolar) and we'd go live with Nany and Papa every once in a while, when we had to move again or Daddy couldn't handle us when Mommy was "away". Daddy could never handle us...he was always a very nervous person. Even when we were all young, we knew it had something to do with his relationship with his own Mom. His mother always had some sort of power over Daddy and could make him do pretty much anything she wanted, even at the expense of his marriage or family.
In about 1985, Daddy finally saw, to an extent, what their behavior was doing to us kids. Maybe it was the fact that I yelled at him and said he was immature when he asked me to sign Mommy's name to divorce papers. Maybe it was the fact that I had to point out that I was only 13 and that I shouldn't be watching my younger brother all week by myself. All I know is he quit smoking and drinking "cold turkey" that last day they took Mommy away to the nuthouse.
This would be when I can defintely say, knowing what I know now, that Lewy started appearing. In his sobriety, Daddy's true personality came through. There was no more alcohol covering up his thoughts or cigarette's to calm his nerves. Lewy's foot was in the door and was planning on taking over.