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!