For now

My dad has dementia, which is a thing I've talked about a little on Facebook; if we're friends there you've heard me mention it. Alzheimers can go fuck itself, I believe I blurted out one night. You know, that kind of productive vague-booking that concerns and confuses everyone except my immediate family. "I'm not sure what's happening, but hugs!" was the general response. 

The first time we heard any kind of diagnosis was eight years ago, when I was visiting my parents as they were packing to move in to a new place in the Hudson Valley. The neurologist called while I was there and we all talked to him about my dad's memory loss. In every other way, the doctor said, your father's intellectual abilities are way above normal. Which makes his memory loss all the more striking. After we got off the phone, my dad seemed pretty depressed. "Well, my mind is going, and that's all there is to it," he said. He's always been matter of fact about these things. 

Since then, the decline has been slow but relentless, but not in the way I, at least, anticipated. I dreaded the day that he didn't know who we were, but that hasn't come; he's still pretty confident in the identity of his family members. Even if maybe he confuses me with my sister Liz, that's fine. I mean I don't ask him, "WHICH daughter am I?" And if I call and my mom says to him, "David, do you want to talk to Alice?" He always sounds delighted.

He knows who we all are, but he doesn't know what's happening or why he feels the way he does. He so badly wants to figure it out, but he's not able. It's as if his remarkable intellectual gifts are being used to work on a puzzle but he can't see that there are pieces missing. He's extremely frustrated much of the time. "I'm trying to analyze the situation," he says, "but it's not coming together." He often can't find the right words, and when it gets really bad, what comes out is nonsense. 

He often puts his hands up to cover his face when he gets a word wrong. "I can't find the words," he says. "This disease makes it hard for me." Then he'll try again. "The synch--no, that's not right--the simchum--no, the scrim--it's no use." He sighs deeply, his hands over his face. His frustration can be excruciating to watch. You want to help him, to figure out the thread and where he lost it, but sometimes it's impossible to figure out where he's trying to go. 

It's when he gets specific that he really stumbles, but if he can talk in vagaries, he's all set. It can be surreal to listen to him then, because his voice carries the same air of authority he always had. I ask him how he's doing. "Oh, fine. Everything's set up correctly. They tell me, 'Oh it should be like this,' not like such and such, and that's just the way it is, and I say sure, buddy, whatever you say." He chuckles and rolls his eyes. "You don't argue with that." 

Lately he's become more delusional. There are forces demanding things of him, people who need his help. Sometimes it's work-related—he has projects that need tending to, appointments he's forgotten about, people waiting for him. Sometimes it's more sinister: a young woman has been abducted, her baby is in danger, she's about to be executed. This would all be easier to take if it didn't upset him so. He wrings his hands. "Something's got to be done. She's in trouble." Nothing we can say will ease his mind. "I've been reading this book," he says, pointing to the newspaper, "and it's telling me that this young woman is in danger, and we have to get to the trampene—no, the tremble—no. No, it's no use, I can't say it, but it's a serious matter." 
 
It looked like, as of this weekend, he wouldn't be able to be home anymore, at least not for a while. A delusion he was having got him extremely worked up—that young woman with a baby, making trouble again—and then he began having chest pains. My mom and brother took him to the hospital. I only found out when I called my mom the next day for our weekly call. "I didn't want to worry you," she said. Like worrying isn't among my favorite activities! 

The conclusion at the hospital, after a day of testing, was that his pains were all the product of his dementia. I'm not entirely clear what that means, but I don't understand this disease one bit, so I don't argue. He's not having a heart attack? Great. 

There was talk at the hospital of moving him into rehab for a few weeks, and then eventually into a nursing home, but in the end my mom couldn't go through with it: she's not ready for him not to be with her. And all he wanted was to be home. At one point during his short hospital stay, he called her, asking when  she was going to pick him up. She had to explain that he was in the hospital and was going to sleep there that night. "This is unfathomable," he said, "that I can't go home." 

Given how cruel this disease can be, I really do feel like we are, in many ways, lucky. He still enjoys seeing us; he's still as kind and pleasant to be around as he ever was. And he did get to come home, in the end. Still, there's so much I miss about him already—and of course there's the fact that I know, at some point, I'll be missing a whole lot more. I'm just trying to hang on to what we've got, for now.