In fact that makes it worse, yeah.
But every time I try to talk about anything related to any scheme that looks remotely like this, someone asks me “Don’t you know what dementia IS?”
My grandmother has dementia. She loses things and believes people are stealing them. She tried to sue my mother for theft. It broke my mother’s heart. Luckily my grandmother’s lawyer had a mother with dementia and understood what was going on. My grandmother chooses to live in a place… it’s not really an institution, it’s more a place where old people choose to live together and it has activities and assistance and stuff but it’s all under their control. She likes it there, but still thinks people are stealing from her all the time.
My great-aunt Voicy (yep, one of my namesakes) has dementia as well. She hasn’t turned paranoid or anything, in fact she’s still got a very sweet personality, it’s just that she can’t remember one minute to the next. She got rich (or, rich by my family’s standards, which may not be rich at all, mind you — anything’s rich when you’re poor) when they found oil on her Arkansas land, and they bought her a nice car that she likes being driven around in. I think her brother takes care of her at home. My family has a long tradition of taking care of each other at home wherever possible.
I’ve also done volunteer work in nursing homes with people with dementia, and gone into nursing homes my mom worked at where a lot of people had dementia. And I’ve just happened to run into a lot of people in the general community who had dementia.
I enjoy running into people with dementia. I consider them ‘cousins’ to whatever I am — it’s not just autism, it’s a collection of cognitive impairments that I share with them, some of which come from autism and some don’t. At any rate, I can see the wheels turning in their heads, while other people see nothingness and emptiness. I can see them working to make sense of the world, while others see them as moving too slowly and needing to be prodded to move faster than they can keep up with the flow of information flooding in. I have gotten in more than one fight with family members of people with dementia, simply by suggesting that they are thinking and reasoning and still human beings. Some family members get very upset when they hear that, they’d rather see them as empty shells who are becoming emptier by the day. And who is this random retard [me] to tell them differently?
But people with dementia are one of those groups of people that I feel like is my people. They are people I can understand, for the most part, better than I can understand your average NT. I can often see their cognitive and perceptual processes as if they are laid bare to me. They look so familiar it’s uncanny.
There are a few groups of people who strike me that way — people with dementia, people with severe strokes or brain injury of the right kind, people with severe or profound intellectual disabilities, people with near-constant seizures that disrupt cognitive and perceptual processing, these are all groups of people where I am just as likely to meet someone “like me” as I am among groups of people with autism. Because “like me” has never just meant autistic people. It means people who process the world the way I do, people who can communicate with me without either of us saying a word. And people with dementia… it’s a broad category, of course, but I’m more likely than not to find someone who can communicate in a way I can instantly recognize as “like me”.
So yes, I know people with dementia. My knowledge may actually be more intimate than the people who are asking me the question. Not that it should be a contest of “how many people with dementia do you know?” But I’ve known a lot, and more importantly, I can see more of what goes on in their brains than most people can. Put another way — I have better theory of mind for people with dementia than most people have for either people with dementia or autistic people. I can tell what they are thinking more often than not, not because I am a mind-reader but for the same reason the average person can take a good guess about what some other average person is thinking. Based on their actions, based on minute changes in body language…
…it’s just with dementia the actions are different, the body language is different, and the content of their thought is often different. But they are thinking, and what they think and feel… it matters. I shouldn’t have to say that, but to too many people, the point of interacting with someone with dementia is not to interact. It’s to herd them around and make sure they get where they’re going.
One of the ugliest interactions I ever had, was with a man whose elderly relative had dementia. She was a rich woman, and he decided that being a caretaker would get him written into her will. They came to our Quaker meeting because she was Quaker, but he made no bones about the fact that he was “not a good Quaker” and didn’t have to abide by our meetinghouse rules that included being kind and respectful to each other. (Quakers, the Gryfflepuffs of Christianity.)
Anyway, one day he was having a conversation with her, and with this woman from the meeting. She was answering questions, but she was answering them with a considerable lag-time, so that by the time she got her words out, everyone else had moved on. So her contributions to the conversation sounded like nonsense even though they were just out of sync.
At one point she was insisting she knew the woman, I’ll call her Aileen, from somewhere. She kept saying she knew her and Aileen kept shrugging and looking uncomfortable. Then, after the gears in her head turned for awhile, Helen (as I’ll call the woman with dementia) said the name of the place they had met. And Aileen had to admit they had met there. Meanwhile Bob (Helen’s greedy caretaker) was nonplussed about the whole thing.
Bob started answering all questions for Helen before Helen got a chance to say anything. You could see the gears in her head start turning, but they’d get interrupted every time he answered for her. And to her frustration, he was often answering wrong. I’d had enough. I said “She has a mouth, you know!”
Aileen turned to me, and in baby talk, slow and condescending, she said “Melllllll, sheeeeee hasssssss de-mennnnnn-tia!” Bob got really furious and started referring to me as “the biddy-body” (busy-body) and ignoring everything I said (except to make loud HARRUMPH noises every time I talked, so that nobody else could hear what I was saying either). As well as talking loudly over any words that came out of my communication device so that people couldn’t hear me.
And Helen just sat there looking confused and frustrated, while they reassured her that it was okay, the evil disabled lady wouldn’t be bothering her anymore.
I relayed the entire experience to the people who ran the meetinghouse, and they said they’d had trouble with Bob before, and that he didn’t take care of her out of any motive other than to get her money when she died, that they were sure he was abusive but weren’t sure if it was in a way that APS would care about, and that they’d try to keep a closer eye on the problem.
But that’s not the only time I’ve pissed off a relative by pointing out the obvious: That someone is clearly thinking and responding and you need to give them a little bit of time to do so, before you decide that they’re just saying nonsense. Over half the time, the “nonsense” is a clear answer to a question posed five or ten minutes ago. And a lot of the rest of the time, the “nonsense” has some meaning that’s idiosyncratic to the person but is not just random.
They’ve now done studies to find out that people with Alzheimer’s still retain a lot of their cognitive and memory capacities long after they lose the ability to communicate by speaking. This shouldn’t come as much of a surprise to anyone aware of the prejudices faced by cognitively disabled people who can’t speak. But it’s still important, because many people won’t believe things like that without some sort of study behind it. Sorry I don’t have the citations on hand, but I remember when it happened.
I also remember being trained into staffishness. I’ve never been good at being staffish. I never will. And they had a bunch of us sitting around a table with people with Alzheimer’s, teaching them to thread giant balls onto giant pieces of rope. Like beads on a string only enormous.
Anyway, I handed the guy the beads and he said “I’m way too old for this kind of thing.” So I set the beads down and we didn’t do anything. Meanwhile this 12-year-old girl across the table from us, who was quickly rising up the ranks of aspiring staff, said “Too old? NEVERRRRRRRR….” in this condescending-sarcastic-staffy voice. She was of course praised for her quick thinking. I meanwhile felt like a failure, even though I knew I was reacting like a decent human being. I just sat there and the guy I was assigned to just sat there, while everyone else strung their beads.
Also they had removed a bunch of people from the unit because they thought it would be too disturbing for us to see them. Because one of them carried a baby doll everywhere that she called Elvis, and thought the doll was alive. Which apparently was “too disturbing” for us to be allowed to see, so they locked a bunch of people in their rooms. Not that being out on the unit was so great either, the whole place was underground. At least, the people with dementia were kept underground in this dark, dismal place with no windows. Everyone else was aboveground.
Anyway… when people talk to me as if I have no experience with people with dementia just because I don’t believe in bizarre condescending institutions for them, I don’t even know what to say. Not with my actual experiences. And it reminds me too much of “Have you ever cared for an autistic person? If not your experiences as an autistic person are irrelevant.”
I’ve also been told that I don’t understand what it’s like to be a “wanderer” because “when people with dementia wander it’s different”. Yeah, different how? And how do you know if you can’t get inside their heads? People have all kinds of reasons for getting up and leaving places, and they can’t all be reduced to a brain malfunction.
