Two questions, really: specifically, how can I get my aunt with vascular dementia to recognize that she needs help and can no longer live alone? And generally, I'm looking for blogs and support forums on dealing with people with dementia.
My 79 year old aunt, who has spent her life being a wonderful, bohemian artist, traveling and living alone all over the world (most recently in NYC) had a debilitating stroke at the end of May that left her with vascular dementia. Vascular dementia is different than Alzheimers on some levels - the progression is not so inevitable; there's more spatial weirdness, etc., but in other ways it's very similar. At any rate, we (meaning my brothers, my mother, who was her sister, and I) moved her down to NC and she lived with my mother for a couple months until my mother died suddenly at the end of August. Since then, we've gone through a lot of changes and things have been wildly unstable, to say the least.
Currently, she is living with me. Physically, she's in pretty good shape for 79 but mentally - well. She comes and goes. Her memory isn't very good; she has absolutely no grasp on numbers of any kind, she is incapable of planning ahead - even for something so simple as a sandwich - she is extremely spatially disoriented and, while there are times you would think she is completely cogent and fine, there are other times when she makes very little sense. Unfortunately, she doesn't recognize this. She insists that there is nothing wrong with her and that there is no reason why she can't live alone in her house.
Using her money and with her consent, we bought her a small house in my neighborhood with the plan to move her into it with a caregiver. We did this knowing that she would hate being in an assisted living facility and because this option seemed cheaper over the long run. We don't have guardianship of her or anything like that - just financial power of attorney which has already proven to be a total hassle since she's incapable of distinguishing between 5 cents, 5 dollars, 500 dollars and so on but not of arguing about it.
She is now refusing a caregiver, refusing any help, demanding to be moved into the house by herself, refusing to consider building onto the house to make it more accessible for a caregiver and on and on. She will look me right in the face and swear up and down that she can cook for herself, bathe herself and so on when I know for a fact (because I've been doing it) that this is simply and absolutely not true. I have to handle her medications, make her meals, get her to change her clothes and, well, the list goes on. She is not capable of using a phone - most of the time, but then she has clear moments - and it's unlikely that she would respond to a smoke alarm. There was a scary episode this summer when a smoke alarm went off and she simply failed to notice it. It's like there's a stimulus/response thing missing in her brain. Along with all the other stuff that goes missing sometimes, like my name and how to find the front door. Sigh.
I've bought a
book and I'm reading it, although it hasn't, so far, been very helpful. We tried taking her to a neuropsychologist who was supposed to explain to her that she needed, basically, assisted living and that went over like a lead balloon, which is to say that she agreed with him fine while we were all in there but within two days she decided he was an idiot and there was nothing wrong with her. Coincidentally, I just got off the phone with an occupational therapist who basically reiterated everything I've just written: she shouldn't live alone and she refuses to recognize that.
At this point I'm really tempted to just take her over to her house and say good luck but I'm terrified to do that - she really wouldn't be safe. Has anyone else gone through this? How did you get your relative to accept the help they need? Should I take her to her house, put minimum help in place - the part time caregiver we've had for some months (who she's currently refusing to pay and claiming is no good,) the physical and occupational therapists who come by intermittently and my brother and I twice a day with meds and food - and hope for the best? You would think that a couple of days of that would show her she needed help but that would mean she was thinking rationally - and she's not, most of the time.
And, for the second part of my question, are there blogs & forums out there where other people are going through this? I've seen the
NYT eldercare blogs but I'm looking more for just basic, day to day blogs - an eldercare version of the mommyblog community, if such a thing exists. All my googling seems just to lead me to sites where people have things to sell but that's not what I'm looking for. I want to talk to other people in the same boat I'm in - there must be some.
I did read this question and yes, I recognize the similarities, but I'm hoping for more specific answers.
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There's little to be done to convince a demented person. Obstinacy is not rational; it is a personality trait, and those are rarely affected in dementia, even after the ability to rationalize their stubborn ideas is lost. I find that most obstinate demented people are still strenuously disagreeing with me even after they have forgotten what they are disagreeing with. This is what the conversation often looks like:
"Don't you think it's time to accept a caregiver into the home?"
"No! Certainly not! My beautiful home! I keep it up myself, it's lovely! And besides, I don't need help."
"What if you did, though?"
"I won't consider it! Really, young man, I don't think you know what you're talking about. And frankly, this conversation is over."
"Which conversation is that? What were are we talking about?"
"Why, ..." (mouth opens as if to speak, nothing comes out) "You should know that, young man! You are being quite impertinent." And so on. By the time they are done refusing they don't even remember what the issue is.
This can't be overcome. Luckily, when doing something against a demented person's will, they make extremely weak and ineffectual opponents. What are you worried about - that she's going to sue you to have the caregiver removed? Never happen. Just make the arrangements without consulting her. On move-in day, the caregiver is present.
If you need her to sign checks or similar, you're going to have to obtain a power of attorney. That will be a hassle.
posted by ikkyu2 at 9:22 AM on December 2, 2008