It’s still my birthday as I write this. It will be for another hour and fifteen minutes. My mother called me around this time last nigth to wish me a happy birthday, and I was fine until she started moaning about my father again.
I know dementia is really cruel and very hard to deal with as a sole caregiver. Plus, she’s over eighty hereself, tiny, and in not the best health. but she makes things harder on herself by one, insisting on doing everything by herself; two, she is holding out hope that he will get better. She tells me about this article she read or that with ways to increase brain usage.
I have told her so many times in so many ways that this was not possible. the cruelest thing about dementia is that except for a very few rare cases, there is no getting better. It’s a slow, steady decline with one ending.
She was saying that he just wanted to sleep most of the time, and he got upset when she tried to make him go for walks. The physical therapist insists on making him work harder than he wants, saying it would be better if he could go to the bathroom by himself and not have to depend on my mother.
Which, I mean.
Here’s the thing. My mother told me that Taiwanese people don’t believe in dementia, really. Or rather, they don’t believe that it’s an ailment–they think it’s a moral failing. So of course the PT thinks if my father tries hard enough, he can do things he literally can’t do. My mother protested and said he could do them when the PT asked. My brother said the same thing about when they went somewhere like the bank. My father could pull it together for that, so my brother thought he should be able to control it all the time.
I tried to explain to them that being able to do something for ten mminutes or even half an hour didn’t mean he could do it all the time. It wsa important to him to appear with it when he was in front of non-family members, so he put all his effort into doing that. That didn’t mean he could do it all the time, and in fact, his acting up later was probably as a result of wearing himself out.
He’s eighty-five years old this year if he makes it to October. he’s frail and everything hurts. Let hem go with his dignity. K and I have talked in the past how when/if we reach that age, we’re going to do wwhatever we want. She said she was going to smoke again with no guilt.
I said I think it’s actually cruel to push him to do things he doesn’t want to do now. And it’s because my mother will not let go the hope that he will get better. I told her to keep that hope in the back of her mind or a corner of her heart, but prepare for the worst (because that’s much more likely to be the reality).
She broke down crying and saying she could not impagine what she’ll do without him. She’s told me that she’ll do anything to keep him alive. Which, one the one hand is touching, but on the other, it’s not for him. It’s because she doesn’t know who she is without centering her life around him. If she truly cared about him, then she would put him first.
The other thing you have to know about my mother is that she cannot make a decision for the life of her. I am actually sympathetic about that because it’s hard for me as well. But it’s almost impossible for her. She’ll listen to the last person she talked to and believe that–until she talks to someone else.
Ian was here once at the same time my mother was for a few weeks. After a week or so, he commented that my mother really didn’t listen to my opinion. He’s right. And in part it’s a sexist thing. I’m a mere girl. What do I know? But it’s also because she asks me first and them my brother, and he’s the most recent one shee’s talked to, so she listens to him.
And, yes, Igot angry and unleashed some of my frustration at her. Why the fuck does she ask for my opinion when she doesn’t listen to it? I didn’t say it in that way, but I did say that I didn’t understand why she asked me for my opinion when she disregarded it. She protested that wasn’t true, but it is.
I ended up feeling sad, disconnected, frustrated, angry, and, quite frankly, emotionally spent. I used to feel this all the time when talking to my parents, but magnified to the nth degree. I hadn’t felt it in some time becuse I have been able to regulate my emotions better since my medical crisis. Taiji has really helped me with that.
In the last two months, my life has been hell. A personal tragedy has knocked me on my ass, and the time change hasn’t helped. I’ve always hated it and don’t see the reason fon it. Now, it’s even worse because we. have. fake. light. We don’t need to get up with the sun or do our activities by natural light. Choose a fucking time and stick with it. I don’t care which one. Just don’t change it!
Side note: I have recently heard the term ‘delayed sleep phase’ and it refers to night owls having a disorder. They put ‘normal’ sleep in quotes, but I still protest it being defined in that way. It’s not or should not be a disorder. Yes, it makes it harder to get along in the real world, but so are a lot of things that are not disorder. I mean, homosexuality used to be in the DSM. It was removed in 1974, but replaced with ‘distress over being homosexual’, which, I mean. Come the fuck on! Some version of that remained in the DSM until 2013.
My point is that not everything the psych world considers a disorder is a disorder. I would put being a night owl in that category. Yes, the world runs on early bird hours, and, yes, it can make it easier on someone to adjust their sleep to that schedule. But let’s be clear. There’s nothing inherently wrong with sleeping in off-shifts.
I read somewhere about how someone was agonizing over being a night owl and how they felt lazy and as if something was wrong with them. Someone commented, “Oh, your ancestors were the watchers of the fire when everyone else was asleep. They filled a much-needed role in society.”
That was really lovely and made me feel good. The person who received the comment said it was the best compliment they had ever received. When I had my medical crisis, I ended up sleeping from 10 p.m. to 6 a.m. for months after returning home. That was because my body had gone through hell and because I was filled with drugs.
My sleep time kept sliding later and later until I was back to 2 a.m. as my sleep time. Now, because of the time change, I’m going to bed any time from 3 a.m. to 5 a.m. It’s not great, but fortunately, I don’t have to be up at ny given time.
I’m done for now. More later.