Catching up on MY Life, at Turbo Speed.

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." He wasn't really though, it was just something to be silly about. 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.  Life was about to change. At turbo speed. And Lewy wasn't invited.

Moving on. Life WITHOUT Lewy.

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.

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.

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.

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...

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

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.

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!

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?

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.

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"

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!

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.

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.

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...

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

And it's Mommy's birthday.

My Horoscope this morning said...

"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...

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.

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...

...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.

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.

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.

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}}}}}}}}}}