Apologies. I hadn't meant to go silent for nearly this long. I could offer you plenty of explanations - workload has been heavy, the economy has picked up, I need to make up for billings I lost during the last few months of the Alzheimer's adventure. Or - fatigue is still an issue, I was a bit too optimistic about my ability to get over it fast. All of which is true, up to a point. But the underlying issue is - and I know this won't surprise any of you who's been here - there's a part of me that just doesn't want to deal with the subject anymore. I never used to understand - well, intellectually I did, but not at a gut level - why people who'd been through the experience would just walk away as soon as it was over. Wouldn't you want to draw on all that experience and try to benefit other people who are still going through it? Of course you would. Except that you can't. You have the intention, but every time you try to organize your thoughts or your effort, something fails. You want to write, or volunteer on the online forums, or help out with local support groups, or visit or e-mail your friends and neighbors who are still on the territory. But in each instance, you don't. The energy just isn't there.
On the other hand... all those other impulses are legitimate and have their own weight. There are people still going through it. Nobody else understands what they're going through. The disease is still represented to the outside world as some sort of Hallmark-style slow fade into misty water-colored memories et cetera et cetera - instead of the ongoing horrorshow that it actually is. No one who isn't already boiled in caregiving knows what to look for. The recent flap about Ronald Reagan's early Alzheimer's symptoms - a debate in which no less an authority than Lawrence Altman of The New York Times could get his facts wrong - suggests that there's work to be done, and that those of us who've been there can help do it.
I don't want to overstate what I can contribute or get all carried away with a sense of mission. I'm not sure I actually know that much about Alzheimer's. I know a lot about my father's Alzheimer's, which isn't exactly the same thing. Every case and every situation is unique, and it's not clear to me that anything I can describe is of any value to any other caregiver. Frankly, one of the reasons I dropped away from the Alzheimer's Association message board, where I'd been volunteering, is that I got tired of giving my one piece of advice - "hire a geriatric care manager" - to people who either couldn't afford one or didn't want on or didn't need one. When you've seen one case of Alzheimer's, you've seen one case of Alzheimer's, as the saying goes. Still, maybe there's something I saw or went through that strikes a chord. And at the end of the day, for those of us who aren't professionals or credentialed experts, what can we offer except our own experience?
So let's try. Either the story is interesting and useful or it isn't. If it isn't, click on - maybe somebody else's will be.
So. When I left off, we'd been talking about my father's earliest symptoms, and wondering if they really were symptoms after all. There were some speech issues, and nothing much else. It was the middle of 2002.
We'll take it from there.
I wondered where you had gone, because I sort of expected an anniversary post, but then I thought "well, there's a lesson in that, too."
But I do want to hear the rest of the story.
Posted by: Janet | May 23, 2011 at 08:11 PM
Yes, I suppose you could say that the non-anniversary post was a sort of anniversary post. And that my non-replies to many previous comments were a sort of reply. Or maybe they were just a statement of continued exhaustion - I think that captures is better.
At any rate, I'm glad you and others have stuck around. The continuation of the story is actively in the works. Shouldn't be long now...
Posted by: Alan G. Ampolsk | May 25, 2011 at 02:41 PM