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!