Realization about the slide into dementia.
This isn't a question as much as a recent insight that I've had with my Mom. Background: Most of the time she is perfectly rational, but she got it into her head that the tinnitus she now has is a motor somewhere above their bed that the facility they live in (they are still in independent living) refuses to fix. Over a year ago, she started really raising a ruckus about it, and she will leave hysterical messages on their phones in the middle of the night and make all kinds of accusations and threaten to report them to the State. My brother and I have been trying to work with her for over a year and nothing has helped. We think her phone calls have decreased in frequency, but the facility manager promises to log the calls but then does not follow through. The manager has a tendency to live in the moment, and so when Mom does this, to the manager it's an immediate crisis and part of a ongoing trend. We have no way to evaluate that because the manager won't make sure the calls are documented. Recently, the manager threatened, again, to send them to assisted living. However, they were evaluated by their doctor and passed with flying colors on the "life skills" (i.e., can they take care of themselves), so the manager doesn't really have grounds to send them there. For a variety of reasons, my brother and I think this would hasten her decline. My brother has no direct experience with dementia. He was too young when our grandfather developed Alzheimer's, and no other elderly relatives have experienced it. He wants to keep trying to convince Mom to stop making the phone calls, to convince her that it's not external, etc. (He's a "fixer".) For a year, we were both focused on her rational self, thinking that was her "normal" state. She'll agree with everything (almost) when she's rational, will agree not to call the the facility, etc. But then it all goes out the window. The insight: We both were expecting a gradual decline in her mental faculties. Finally, out of the depths of my memory about our grandfather, I remembered that it's not a gradual, linear decline. It's like a seesaw. One day he'd be fine, the next irrational. It was gradual in the sense that the rational times became shorter and fewer, but glimmers of his old self would still come through until the last couple of years. I was getting worried about my brother because dealing with her was so stressful. He lives the closest, so he gets the brunt of a lot of this. I finally convinced him that we should just back off and let things take their course. We've tried fixing the situation, and we can't. So we just need to enjoy her rational times and basically ignore her irrational times and not let them stress us. The facility has the final say on whether they go to assisted living or not, and by arguing with the manager (which we have done), we're just stressing them out and that doesn't help Mom. We're going to recommend to them that they just ignore her calls. She's gotten to the point where she doesn't remember them the next day. As for reporting them to the State, they have the legal protection with the doctor's finding, and if they know we back them (they are quite compassionate, despite the manager's style), we think they will back off and just wait until Mom really does need assisted living. She's not there yet. So I guess the bottom line to all this is, recognize that in the early stages of dementia, the real indicator of how they are is the irrational times, not the times they are themselves. And that it's not a straight-line decline. There will be days you're convinced they can't possibly have dementia, and the next day they may be irrational, but trying to get them to recall the day before, when they were rational, is fruitless (and vice versa). It's like she's two different people, and the same was true for my grandfather. I see a LOT of people on this forum struggling with this seesaw. Recognize that routine is important, as it is to people with dementia, and they can convince themselves of anything. And those delusions can carry over into their rational times. Don't argue with them because it just stresses them and you. We've noticed that Mom is fine with the daily stuff, but it's now approaching the point where weekly stuff, like going to church, is too infrequent for it to be part of her routine. Incidentally, Dad can't keep her on track. He has his own issues. He doesn't have dementia, but he does have periods of aphasia because of Parkinson's disease. So he's very routinized, too. I hope this helps someone. When I got together with my brother the other day (I was able to visit just him and his wife, without Mom), I could see the weight lift from his shoulders as he realized that he can't "fix" this. That allowed us to move forward to figure out the next steps as they're needed.