Tuesday, July 19, 2011

frascati. It's Italian.

I really hate losing my mind. I wouldn’t do it if it seemed like I had a choice, but I probably don’t. I almost forgot to give the dog her evening snack for two days in a row, but each time caught a glimpse of her making her pathetic face and remembered, finally. Luckily, someone here has a brain.

Oh, the other thing is I’m getting Parkinson’s.* I might as well, my dad died of it and I’m all gangly like him, but weirder. Usually my clumsiness is worse in the morning when I’ve gone back to the coffeepot a few too many times. Caffeine jitters you say? Ok, maybe. That and the fact that my wiring and physical coordination have never exactly been state of the art could explain a few things, but I might as well have dementia and Parkinson’s because it seems neurological disorders are pretty much destiny around here.

Oh, and one more thing: Why are some people J.K. Rowling, and other people are not?

Something I am forced to wonder about is whether if you released J.K. Rowling into the Anne Arundel Medical Center complex of hospital and clinical buildings, would she be able to find her way from Parking Garage B to the office of the Greater Annapolis Medical Group? I actually did succeed in doing that today: It was down one ramp, through a door, past a barrier that indicated “don’t go this way,” down a stairway, across an outdoor place where people in cute scrubs go to smoke, in another doorway, down a hall, up a staircase, and around the corner. While it is possible that I have the worst sense of direction ever, I did that in both forward and reverse this afternoon, by paying careful attention. And giving Jeff verbal directionals. (“now we turn right,” “U-turn,” “up a curb!”)

I’m probably just mad because I’ve reached the final two stages (#s 21 and 22,) of Legend of Zelda: Twilight Princess, and I’ve realized—I don’t want to hit anything else with a sword, I stink at games like this in general, and I especially stink at this part. I’m inclined to force Gabe to complete the thing while I watch, just to achieve a sense of closure.

I will turn 50 at the end of this year. When I’m done being 50 I’m either going to laugh at myself or laugh at myself. I just hope I do it in a nice way, and laugh with me, not at me.

*not really, as far as I know. coffee, in fact, is thought to help.

They look good on me.

Today, when we stopped at the library, my sunglasses decided to surprise me by divesting themselves of the screw that holds the right earpiece to the frames. Still, I was able to manage for the next two legs of the drive by balancing them on my nose and one ear. “They look good on you,” said Jeff, who recalls that I recently got a new pair of glasses, and wished to comment in a helpful way. “Thanks,” I said. “They’re old and broken.”

I grabbed my not-so-trusty eyeglass repair kit (the one that comes with a small assortment of screws, none of which fit any known spectacles,) and we trundled off to lunch, me with the notion that I could fiddle with this project while we awaited food.

I don’t know why I thought that. I know I can’t do tiny work without magnifier glasses on, so I stashed the parts in a pocket of my backpack until we got home. Then I organized my tools. 1 tiny screwdriver, 7 worthless screws + the original which fell out, 1 pair of needlenose pliers, and the sunglasses, in two parts. Oh, yes, and my zebra-striped, supermarket +1.50 magnifiers, which I put on. “They look good on you,” said Jeff. “Thanks,” I said. “They’re just the magnifiers I bought at Whole Foods.”

After numerous false starts and a variety of attempts at ways not to drop the screw while finding an available set of opposable digits with which I could begin to screw it into place I did succeed in replacing the original screw. Otherwise it would have been Peeper’s Family Eyecare tomorrow. Where I get all my prescription glasses including my new set of progressives. Which, as it happens, Jeff thinks look good on me.

Thursday, July 14, 2011

What will Terry do?

Last night I stayed up way past my bedtime (until 11:00pm, that is,) because I was watching a film made by Terry Pratchett on assisted suicide. It is called Choosing to Die, and it documents Sir Terry’s visits to a Swiss facility, run by an organization called “Dignitas,” which provides the space, screening, guidance, and medications involved. Also, he interviews two terminally impaired people choosing that exit strategy, and their loved ones.

Terry Pratchett (in case you’ve never read any Discworld, or Wee Free Men books,) is an English fantasy novelist who is contemplating the Dignitas option himself as a way to escape from the otherwise inevitable endgame of his posterior cortical atrophy.

Although I’ve known of Pratchett and his diagnosis for some time, this film was the first time I’d seen him in action, and I was struck by the amount of insight he seems to retain into realizing the scope of his illness-induced limitations. Sir Terry can no longer type, and he knows it. Instead he relies on his assistant to take dictation. Also, that he is able to conceive of and carry out the making of a documentary, and interview the people involved cogently and without seeming to lose the thread is evidence that Jeff has tumbled a good many steps below Terry, off the staggered cliffs of Alzheimer’s. Jeff could not determine the steps necessary to contact Dignitas. He could not understand why he’d even want to contact them. And these very factors bespeak a cognitive condition which would, in and off itself, disqualify him from the program.

I wonder, in a moot point sort of way, what I would think if Jeff were of sound enough mind to choose the Swiss option (which is, as I understand it, also available in Belgium.) I believe that I would be like the wife of the man in the film who is suffering from a degenerative motor neuron disorder and have to be supportive and cooperative. That said, I admit that we almost have to start with a reflexive reaction that says “What? No way! I’m not getting involved with that!” This is partly because you in no way wish to be complicit in someone’s death. Unless it’s yours, and it’s you choosing. Because there are not too many folks who’ve watched a partner fade into Alzheimer’s and not considered that—were it they—they’d want a way out. Short, sweet, quick. This is why I would have to go along. What if you wanted that option and everyone stood in your way, and told you you couldn’t...that you had no choice but to degenerate into fetal, mindless helplessness?

Lately I’ve been thinking about Jeff, and what he would have wanted. What would he have thought, as a hearty active 45 year old, of his life at 63? The existing Jeff does not meta-analyze. He doesn’t think about the fact that he can’t drive, put his pants on, wield a tool, have a conversation. It is one of the dubious “gifts” of Alzheimer’s that it often protects its sufferers from understanding what kind of condition they’re in. I know what he would have said. He would have wanted out. He would’ve said “no way.” It does me no good to know that. I have to deal with who he is now.

Well, this is why it’s “assisted suicide,” not euthanasia. When we euthanize a sick pet, we are choosing. When a human wants an escape route, he/she must be able to carry out the definitive steps him/herself, up to the final action of swallowing the potion. So, like most Alzheimer spouses, I’ll be on the boat ‘til it runs out of gas.

I wonder what Terry Pratchett will do? He acknowledges that, with AD, it’s tricky. He still enjoys life. He wants to keep writing, even by dictation. He feels that when he can no longer dictate a story, that’ll be the time. But will he still then be competent? Like the younger man in the documentary, who chose to go before his multiple sclerosis rendered him unable to take action, Sir Terry recognizes that he will likely have to decide before he’s really ready, and waiting too long is a choice by default.

Friday, July 08, 2011

tired.

Jeff does not need to be wearing Gabe’s shoes, but he put them on anyway.

Where are you going in Gabe’s shoes? I ask. Because we’re pretty much encamped here in the O.Henry Hotel, Greensboro, NC, for the evening.

Jeff chuckles, sort of. No wonder they didn’t fit right, he says. Then he takes them off and starts rummaging around for his loafers.

Where do you wanna go? I ask.

Jeff asks when we’re going home and I tell him tomorrow, after breakfast. I’m too tired to drive home tonight. And even if we wanted Gabe to drive, he didn’t bring his wallet and license. I told Gabe that he is an adult now and really needs to bring his i.d. with him almost any time he leaves home. He shrugged, ok. Luckily, at a small college like Guilford, where he oriented today, they believed he is who he said he is, and he got his college card i.d. photo taken, and his “quantitative literacy” placement exam completed, all without needing to prove his personhood.

Today was too much for Jeff, there was no doubt. Not that we did much. We had complimentary breakfast buffet, then hied ourselves to the Guilford gymnasium for orientation check in. We sat through some panel talks, walked around the campus a bit (yes, it was steamy...thank goodness for trees,) ate some dining hall lunch, and waited for Gabe to complete his math test. But it was clear, by early afternoon, that Jeff was spinning in circles every time I took his arm as a substitute for a temper tantrum, before faltering into the hunched, glaze-faced shuffle that characterizes Alzheimer victims who are typically more degenerated than he.

I take Jeff on outings almost every day. Usually to Punk’s Backyard Grill or similar for lunch, with a detour for restocking orange juice and bagels. He likes it. I’ve wondered if such simple adventures are enough. Answer: They are.

He will be happier at home the next time I take a road trip. He will be happier at home with me at home, but that’s asking too much. When we got back to the O.Henry this afternoon, I studied the ads for our local “AngelCare Network,” and “Home Instead Senior Care.” I was looking for, and found, the magic words “respite care.” Yes, I hear stories. And yes, I know that you don’t always get just the right fit with home-care helpers, at least not at first. And I honestly swear I don’t know how they make sure the bases are covered if you leave your person home with hired help for 48 or 72 or 96 hours. But I’ll be talking to them. This week, I think. We move Gabe in on August 18. I don’t know whether I’ll take Jeff or not.