4 home depot, aphasia, aluminum, euthanasia, good friends

06-25-04 Maytime: 12.19.11.6.19 10 Cauac 2 Tzec

Yesterday I had to run some errands. I spent about an hour with my mother-in-law, telling her about my father and talking about the loss of her husband when they were both 28. I have that firmly in perspective, which I’ve said before, but my mother doesn’t. I had to make some copies at Staples and pick up some stuff at Home Depot and I also did a lot of research on Wednesday night on Alzheimer’s and wanted to drop off a letter to my mom about what I think we should do. My dad was home so I decided to take him with me to Staples, Home Depot & lunch. He is a lot worse than I thought. Or maybe I was deluding myself.

I happen to be fond of the chicken fajita roll-up at Applebee’s (now I sound like a commercial, I’m sorry) and since it’s across from HD and down the hill from Staples it seemed a logical place to eat. But my father said he’d been there several times lately and didn’t want to go. My parents rarely go out to eat so I knew that wasn’t true–sometimes on a Sunday they go for lunch, but not during the week, and I don’t think they’ve ever been to Applebee’s without me and Will. So we went to Pappas, which is a little hole-in-the-wall pizza place in Meriden. Apparently my dad goes there almost every day and gets breakfast for lunch. Everyone knows him. He could not articulate his order but the waitress knew what he wanted. One of his friends, Ed, paid for our lunch. He said he owed my dad a favor. When we were finished eating, I went to make sure Ed had paid and to leave the waitress a tip. My dad couldn’t believe that Ed had bought us lunch and had no memory that an hour before he’d promised to do so. He couldn’t understand why I’d given the waitress money if Ed had paid, even though I explained it was a tip.

I wanted to put down a weed barrier and some wood chips in my yard around some cactus I just planted. My parents have a landscaped hill which includes chips and plastic. Before we left, I asked my dad about it and he didn’t know how it was installed. When we got to HD, I did my usual wandering around aimlessly (WHY can’t they have a store directory?!), looking for the things on my list. I found the weed barrier (which I didn’t even know was called that, I just wrote down “plastic”) but not the chips. My dad, who was pushing the carriage (yeah, that’s nice, huh, I make my old senile dad push the carriage–but he wanted to!), asked what I was looking for. I said, “wood chips, you know, like you have on the hill, we were looking at them before we left” and he couldn’t remember. :(

I am kind of mad at my mother. I only see my father for an hour, maybe two at the most. I had no idea that was the limit of his memory. I picked him up around 12:15 yesterday and stayed with him until 4:30 and his memory is shot. She let this go on too long. I thought it was just his speech (“Expressive Aphasia” is the technical name for it). But it’s his memory too. I had hopes that he just had progressive aphasia without any other symptoms. But that hope is ended.His hearing is also terrible. If he’s not looking at you, he doesn’t hear. That doesn’t help with his language difficulties-if he can’t hear words, he won’t remember them.

My strategy yesterday was just to talk to him. Talk AT him. Even if he didn’t respond, or responded incorrectly. I believe he responds incorrectly because he can’t hear and he’s guessing what was said. After my parents go on vacation next month my mom’s going to take him to Gaylord for a hearing test. (Gaylord is a famous rehab/nursing facility–the central park jogger was taken there, for instance. It’s right across the river from my house.)

Basically, it was good and fun to spend time with my father and I would have enjoyed it even if I didn’t know such times are numbered. I really believe, KNOW, his communication WILL improve when he can hear. I wish my mom would bring him NOW so he can hear over vacation. But I’m still only the kid, the child, and I can’t make her do anything.

One example of a conversation we had. . . .My mom always has 4th of July off and it’s become a tradition for her to come over and work in my yard. I have this wild rose bush in front of the bird room which gets out of control–it’s got to be seven feet high this year. And I used to have this weed-from-hell (it’s a climber with smelly orange roots) which last year we eradicated–it had grown up into the dogwood and was as tall as the 2 story house. So we prune the roses and destroy the weed-from-hell and cut branches off the trees and kill poison ivy and whatever. This year she’s bringing my father, since he’s retired now. I thought maybe he’d rather wash and wax my car than play with bushes. (That sounds mean again, like having him push the carriage. But he loves cars. He’s always saying “Do you want me to wash your car? I’ll wash your windows.” He’s always been like that. I am incapable of washing my car by hand because I was never allowed to–-he always did it for me.) So I asked him, several times, if he’d rather play with the cars than cut bushes. And he couldn’t formulate a response. He finally said he’d have to ask my mother, which is absurd. She couldn’t care less if he’d rather wash the car than trim the bushes.

So yeah, this is difficult for me. I decided I’m going to be a good child and while they’re on vacation I’ll put Thompson’s water seal on their new deck. Of course, that’s only because I haven’t put it on my “new” porch yet (the porch is 4 years old)!

The medicine the doctor gave my father came with a pamphlet. It says the pills should stop or mostly halt the progression for about 2 years, but the inside has testimonials from people who’ve been on it 5, 7 & 9 years and still function. I guess they’re in the minority.

I just talked to my friend from college online. She said her great-aunt had it and she’s read up on the disease. I thought it was caused mostly by eating food cooked in aluminum pans and that I’d be safe but she said there’s a genetic component. If that’s true, I look at dad and my aunt and know I’m probably screwed. That aunt is my father’s mother’s sister. (I never knew her--my father's mother-- & don’t think of her as my grandmother-my dad was mostly raised by that aunt.) My cousin (that aunt’s grandson) and I joke about how we’re going to be old and senile together. But that’s not true. I have no children. I would be a total burden on society. I would say my goodbyes and take myself into the light. A friend of mine, from my last job, said if she ever gets diagnosed with any disease that will leave her incapacitated and a burden, she will have a glass or two of wine, put on some nice music, and sit in the car in the garage with it running.

And that should be legal, and it should be everyone’s right, to die with dignity. I guess it’s time for this soapbox again. When Alf got sick and old, my parents put him to sleep. Same with Patches. But if it was my grandmother, or my father, who was incontinent and had dying kidneys and was in pain, the doctors would force that person to stay alive, past any point of wanting to be. WRONG.

I have no illusions about my childless state (after all, I chose to be this way). I can’t expect Beth’s kid to take care of me. Someday I’ll be old and sick and no one will love me anymore and I’ll not be able to contribute to society. Why should I be alive? If I’ve fulfilled my contracts here on earth, let me take my leave.

Chances are that my husband will die first. Genetics tell me if I don’t get cancer I’ll live to 90 or more (my great grandmother was 3 months shy of 100 when she died, her daughter–my grandma–is 86 and still healthy, my great-grandfather-grandma’s husband’s father–lived to be over 90.) Mom’s side has both cancer and living forever in the genes. Dad’s side, well, I have Alzheimer’s to look forward to. Let’s see, discounting the fact that I could die a thousand other ways not related to genetics (like having my leg bitten off by a shark while snorkeling in Grand Cayman, a persistent dream I’ve been having), that’s 33% living to 90, 33% cancer 33% Alzheimer’s. Hmm. What a grim future I have.

I have to say that my friends are being supportive. Ed is a lawyer with MS & a writer who I met through Writer’s Village University (and that IS a plug, I love that place!). I posted a message about my dad in the classroom (which is a bulletin board) and he sent me his phone number and told me to call him collect anytime day or night. I can’t say he’s a total stranger, we’ve been taking a class together for 2 months and even talked about a collaboration since our writing styles are similar. But that kind of outpouring of support is overwhelming. My at-home (in person) friends have also been good, one of them also has the “call me day or not” clause in our friendship now.

Anyway, I figure that any friend who’d drop me because my dad’s sick is someone I don’t need in my life. (1700)