Alzheimer's Dad pleae vote!

Alzheimer's Dad
follow the link and like on facebook, +1 on google or share with the other button to vote. Right now I'm in 4th place.

A place to say goodbye, or hello

I was stuck at a red light the other day, right next to a cemetery, and several of the graves had little American flags on them.  I started to wonder if my dad was eligible for a flag.  He got a medical discharge out of the Air Force.  I know he wasn't in long enough to get any benefits.  Does a flag count as a benefit?
But it's a moot question, cuz my dad doesn't have a grave.
I guess when I decided to cremate him I wasn't thinking about that.  When I worked around the corner from the cemetery where my grandpa is buried, I used to get a spicy chicken sandwich from Wendy's and then sit on his grave and eat it.  Then I'd go back to work and say that I had lunch with my grandfather.  It didn't make me feel CLOSER to him (although I physically was), it just seemed like the right thing to do.  I only worked there a couple of months and I haven't been back to "visit" my grandpa since.  I have to wonder what state his gravestone is, since I don't think my mom's been there to clean around it or plant flowers and obviously my grandma hasn't driven anywhere in 4 years.
Of course, visiting my father is easy.  His ashes are at my mom's.  She'd probably let me borrow them if I asked.  I guess technically every time I eat at mom's, I'm having dinner with dad like I had lunch with grandpa--he's only on the other side of the wall from the dining room.
But it's weird not to have a GRAVE, with that ponderous gray stone that distills a life into 10 words or less (name, dates, maybe a "beloved father and husband" inscription).  The ceremony at the grave site, well those are always terrible and I'm not sad we didn't have one (I'd have been a lot sadder if we had, if you know what I mean).  Everyone I know who died has a grave.  Except my dad.   Does that mean I don't love him?  I could spend all my money and buy a plot and pay a backhoe to excavate a hole and put his pretty green stone box underground and put up a big ugly gray stone to tell everywhere were the pretty box is hidden.  That seems silly.  My mom wants the box buried with her.  Fine with me, but I'm keeping a spoonful or two of dad so he can be in the coral reef with me.  Because I know how much my dad loved nature and he'd think being a coral reef was awesome.  And although no one would ever actually do it for me, I think it's pretty cool that to visit a coral reef grave, you have to scuba dive.  "Going to visit my dad, gotta get my tanks filled." The big blue sea, the immense green ocean, becomes your gray stone.

Then again, whether you believe in life after death, or the Elsewhere Bar, or that life is a candle that just gets snuffed out at the end, everlasting life is really when people who are still alive remember you.  If you're a fan of Terry Pratchett, the British author whose battle with Alzheimer's started exactly when my dad's ended, you might have read his book Small Gods (it's pretty stand-alone if you're not a Discworld reader).  It's about a bunch of gods who no one worships anymore, because no one remembers them.  That's what happens eventually to people I guess, no one is alive who remembers you and you fade away.  But I've written all this and as long as Blogger is online, even if I die today, people will read my blog and remember my dad.  And maybe me.  So this blog serves, I guess, as my dad's big gray stone, a place to visit him and say hello.  Because he's here, somewhere. 

The Last Time

This morning I was thinking about two different friends of mine, both facing losing their moms to cancer.  At least they get this holiday season with their moms, and they know it's the last one, is the direction my thoughts went, and I started composing some sort of holiday blog post in the back of my mind.
And when I got home from driving and musing, and logged onto Facebook, I saw to my dismay that one friend's mom had succumbed to her cancer only 2 weeks after her diagnosis.  Last year was their last holiday together and they didn't know it.  Her mom was healthy and fine in mid-November (or thought she was).
You don't know when it will be the last time.  The last time you see someone, talk to them, celebrate a holiday, hoist a pint, laugh or cry or cringe at a movie together.  It is worse when a healthy person gets taken in an accident of course, as there is no warning, but as my friend just found out to her sorrow, a mom can be fine on Thanksgiving and dead of cancer by Christmas.
When my dad got diagnosed, the doctors estimated, based on his age and how far his Alzheimer's had progressed, that he would live approximately 11 years.  How GOOD those years might have been, they didn't say.  Just that he should have made it to about 75 years old.  So at that last Christmas, the one we didn't know was the last, in 2006, we thought we had 8 or 9 more years, when in truth it was less than a year.  
Ironically, every year my mom thinks it's her mother's last Christmas (she's 93 now) and every year Grandma keeps going like the Energizer bunny.  We're almost numb to thinking about her not being here anymore, to the point that when it does happen, we're going to be in total shock.
I guess we all know somewhere deep inside that anyone and anything can be taken from us without warning. And maybe we should live like that, never going away mad or holding a grudge.  Always kissing our loved ones goodbye and telling them they are loved.  But we don't.  We get angry.  We slam doors.  We leave without saying goodbye.  Everyone would like to think they are immortal and so are all their loved ones.

I believe that as long as someone remembers us, our memory is immortal, and our souls hang out in the Elsewhere Bar and do whatever needs to be done in the next life.  But Alzheimer's and other forms of dementia can steal away even that breath of life, taking those memories forever.
I can't offer a solution.  I'm not a god or a doctor, just a person who has lost so much, who grieves to see her friends in similar sorrow.  
Love who you have while you have them, and remember them fondly every day after that.

"Still Alice" book review

I read Still Alice last night.  For those of you not familiar with it, it's a novel written from the perspective of a 50-year old woman with early onset Alzheimer's.
I was expecting something more like Flowers for Algernon, especially as the title character starts off with a PhD and as a tenured teacher at Harvard.  If I was writing such a novel (and I still might), I'd do it that way.  If you haven't read Flowers for Algernon, it's a story about a mouse named Algernon who is made incredibly smart, and then a human named Charlie who goes from basically mentally retarded to genius by the same process, and it's all told in journal form by Charlie.  The unreliable narrator is a great tool when properly done.
I am proud to say that I did not cry, even when she got diagnosed, until page 111, when she started talking about butterflies.  My dad loved butterflies long before (and after) his diagnosis, and we covered his memorial picture board in butterfly cut-outs.
I don't think, however, that Alice took me into any uncharted waters.  They were all familiar.  She can't find the bathroom and pees on herself and feels shame.  She forgets one of her daughters.  She makes mistakes at work and doesn't realize her poor performance.  She was never violent like my dad, but that's rare.  I expected more frustration and more control issues.
Two things did bother me, that were left hanging.   She forgets to go to her support group meeting, and she can no longer deal with her e-mail to respond to her EOAD friends. It doesn't seem like anyone ever takes her to the meetings or that she ever talks to those people again.  Then she leaves the suicide instruction document open on her computer and no one ever remarks on it or looks for her vial of sleeping pills.

The suicide pact was probably the best part of the novel--her way of checking if she's still cognizant of her surroundings.  She puts a series of questions on her Blackberry that she has to answer every morning at 8 a.m. and if she can't, she has to go to the Butterfly (suicide) document on her computer and follow the instructions immediately.  At first the answers to the questions are detailed and crisp--the exact address of her home and office, the exact birthday of her daughter.  Then they get less so, until finally she is simply saying what state her home and office are and getting the birthday completely wrong.  But she doesn't even realize it, of course.
I didn't like the character of her husband very much.
His refusal after a while to exercise with her, the whole Sloan-Kettering thing--he was a jerk.  Their marriage felt fake.  I never thought they loved each other, there was no passion.  They never had sex--implied or implicit, offscreen or on.  And I would think that's an important part of EOAD--do you still have sex?
As far as a character study of her, and of the disease, it was fairly brilliant, but all the other characters were flat, cutouts moving through her world, even when she is barely diagnosed and showing symptoms.
I would give this book 4 out of 5.  It's really good, but it could have been amazing.
I was thinking about the book after I finished it, and how Alice is treated by her co-workers and friends after she admits to her diagnosis, and I realized that it would be better to lie to the world and say "I have a brain tumor."  My great-uncle had a brain tumor that caused dementia and everyone rallied around him.  My dad had plain old dementia and he was a pariah.
(book cover from Amazon, butterfly montage from www.mgcpuzzles.com--we used it on my dad's board)

Walk to End Alzheimer's pics

The Walk to End Alzheimer's was this morning, at Lighthouse Park in New Haven, which is on the beach and has an indoor carousel.

i

The four flowers from my team.  The colors got confused somehow, my friend's shouldn't have been yellow which is caretaker but they told us yellow was supporter. 

My hubby with his Alzheimer's shirt on.

My mom with her Alzheimer's shirt on.

I found this cool rock on the beach with a cross on it.  I'm not Catholic but my dad was so I kept it.

Me with some of our flowers.

Part of the Memory Garden.  Blue was for people who had Alzheimer's.

Starting line.

3 memory flowers for my dad, planted in my yard.  They are fun, they spin like pinwheels.

I raised, between my tag sale and Facebook, almost $400 for the walk (and they gave me 4 t-shirts, even though it's $100 per shirt).  It was very crowded.  The day started out rainy and horrible but by the time we got there, it was gorgeous and they said it was the biggest turnout ever.  When I tagged my pictures on Facebook with Lighthouse Park, it said 1077 people were checked in there--and I didn't use FB check-in there (I used FourSquare) and neither did anyone with me. I'd say over 2,000 people.