Side Effects
(among the first in a series)

Alzheimer's is irreversible, incurable and degenerative. There are some studies that suggest increased mental activity can help prevent it, but it's not clear how the causation works (i.e., if mental activity staves it off, or if you're more mentally active because you don't have or don't have a predisposition for Alzheimer's).

Degenerative is a clinical word. It does not capture the experience of having the person you've lived with for 35 years accuse you of stealing her jewelry, or poisoning her. It does not capture the annoyance of having the same question asked 15 times in 15 minutes. It does not capture the helpless frustration when your spouse shakes with anger over things that happened 35 years ago. It will not capture the full horror of the first time when your spouse doesn't recognize you, thinks you're a stranger, demands to know where her husband is.

The progression of the disease is well documented, you see. I don't know whether it's better to know or not. My uncle must know, since he's done the reading. I can't imagine.

A few years ago, my aunt mentioned that she felt something different about herself. She was starting to slow down, feel old. And that's normal, right? She is 72, after all. Slowing down in your late 60s is eminently normal. I forget what caused it at the time, but I remember around that time starting to feel concerned about her brain, and having a discussion about it, during which she angrily declared that she wasn't stupid.

No, she wasn't and isn't stupid, but she definitely had begun to close herself off from outside pursuits and people. She used to volunteer at a local Buddhist temple, but someone there kept asking her for favors, and so it got too complicated to continue going there. She used to be friendly with so-and-so, but she found her annoying, so she stopped seeing her.

So we sent her puzzles and Sudoku and dance lessons and gift certificates to gardening stores outside the immediate area, and she did some of the puzzles and some Sudoku, but never did the dance lessons and never went to that gardening store. And the amyloid plaques in her neurons began to build.

She and my uncle talked of traveling, which they could do cheaply because of his affiliation with the armed forces. She's never been to Europe. Never seen Buddha's birthplace. Never been to so many places that she wanted to see. They never went, and now she'll never see Europe, never see Buddha's birthplace.

When she started having more and more trouble hearing, we had a number of conversations about learning sign language, but she refused. Was she afraid? Was she refusing to accept that she was getting more deaf? But she wouldn't, and now she never will.

I encouraged them to get a dog years ago, but she didn't want to get one, because it was too sad when the dog dies. So they never got one, and now they've given up on getting one, because she's too unstable to take care of one.

Come out to graduation, I begged, come out to New York for Thanksgiving, I asked, and they said yes, no, yes, and then finally, no.

The number of things they could have done, that we encouraged them to do, that could have put off the onset! I want to scream, "You should have done this! You should have done that! Why didn't you? Why did you just sit at home and do nothing? Why did you let her just sit at home and do nothing? Why didn't you try the dance lessons, the ASL classes, the new gardening store? Why didn't you, when you had the chance? Why did you refuse, and why did you let her refuse?"

And now: Why can't you take the long view? Why do you tell me it's terrible and you don't know if you can keep her at home much longer one day but the next day, that "she's doing a lot better" and that everything was "real good"? Don't you know that it's irreversible? Incurable? Degenerative?

It's so tempting to fall into the anger, and think accusing thoughts. Easier than advising across oceans, easier than being supportive across a dozen time zones.

Why? Why? Why? All those things, that might have helped, and you shut them down, refused, turned away. Why?