Open question: The struggle over doing it yourself

[I use “learned incapacity” in this post to mean: a declining capacity to do a task over time, based on the fact that someone else does it. There appears to be a lot of social science jargon adjacent to this term, but I am not referencing any of it.]

About a month ago, Dad’s decline crossed the tentative line I had drawn in my mind about when I would have to stop taking care of him myself. I had drawn this particular line not because I thought I was incapable of giving that kind of care, but because he was simply unwilling to accept it. In the days after the stroke, when I had had to give it, it distressed him so much and later made him concretely, physically hostile. According to reports from the assisted living, he is both distressed and hostile: but I am not the target any more. This development should rationally put an end to the qualms I have felt since April about whether the move to assisted living was absolutely necessary or if I couldn’t have figured out a way, somehow, to facilitate keeping him out of a facility. That doesn’t mean that they are gone from my mind, but I have grown to feel like guilt about what I am not doing is mostly about me, not about him, as with minor exceptions he gets much better care there, not least because they all love him. I’m not exaggerating. He’s tremendously popular.

A friend of mine who’s never met him said to me recently that he is just an unconscious fighter, and I find that assessment correct. It’s true that the almost-three years of intensified watching over him were marked by constant arguments about what he could and could not do and also that this conflict was part of what made caregiving so exhausting. The exhaustion came not just from trying to get dad to stay within certain boundaries, but additionally from explaining to outsiders why I still “let” him do so much. Often the answer was that I’d calculated how much argument I had the energy for in any given week. I am not naturally pugnacious, but as I’ve mentioned before, my father knows where all my buttons are, and it is a fact that thirty-five years of ACOA adult life have made me much more aware of and willing to defend my own boundaries. Had I had a different adulthood, had I never forgotten how to prioritize him first, I might have had an easier time acquiescing to dad’s demands.

An anecdote from the annals of caregiving stupidity: We went nine rounds over control of his pillbox (I thought I had written about this before, but if so, I can’t find it now.) The short version is that the doctor was frustrated that he was unable to take his meds accurately according to plan, and dad was angry at me when I tried to supervise it. In the end I had to take over the task completely to make sure it got done correctly, deciding in favor of the doctor’s priorities over dad’s, but victory was ultimately pyrrhic. Dad developed a learned incapacity to take his own pills, even temporarily. So when I wanted to leave for London, I needed to find someone who could give the meds, and that turned into a huge hassle as well, one of the two largest obstacles to my own freedom in that situation. And, of course, we now pay the full price for med administration in assisted living as opposed to the option where he takes care of that himself. (It doubles the price of the pills, but the money isn’t the issue so much for us — although I have heard horror stories about this problem — as is the larger question of the value of “doing it for yourself.”)

On the other hand, there are things that he never struggled for, learned incapacities of his that he colluded in. The biggest example of this was his inability to cook / nourish himself, which contributed to his decline after mom’s death. They were actually proud of this and joked about it: “your father would eat water soup, but I’d have to warm it up for him.” He built a few of these into my own persona (machine repair and operation are high on the list) and the struggle against them has been hard. But it’s kind of stupid: I operate all kinds of kitchen machinery, and I have driven a car since I was sixteen, so why wouldn’t I be able to operate lawn machinery? The answer is that all these lines were enforced in service of my parents’ ideas about gender roles and class attitudes and what they thought well-raised daughters of the middle class in the US should and shouldn’t do. Well, in the end, I figured out the zero-turn mower and this summer I got a battery operated string trimmer. But it will never come easily.

On the other hand, how much does learned incapacity even matter?

The latest thing is that dad doesn’t feel much like walking anymore, since the second heart attack. After the first one he did cardiac rehab and kept walking, but since his enrollment in hospice, he’s no longer all that interested, and essentially, he can’t walk anymore, beyond a few steps. Ultimately it’s going to create an accessibility problem, because if he fell while he was at home with me, I can’t dead-lift 125 lbs by myself, and the house is not really set up to accommodate a wheelchair. And my car is small, so carrying one around with me would also be a challenge. He will be able to continue going to breakfast, but in eight weeks or so, the outside entries and walkways will start to be slippery. So on top of the problem I referred to in the first paragraph, it will be practically extremely difficult for him to leave assisted living at all.

Ultimately I am feeling like there’s been a diffuse tension in the last three years — the warning from therapists that “if he doesn’t relearn how to do it, he never will” — the list of areas in which dad wanted to assert control or refused to surrender it vs those which he didn’t care that much about — and the question of areas in which a health care professional wanted control asserted (either by me or someone else) in order to make life safer or easier. It’s such a weird balance beam to have to stand on.

~ by Servetus on September 24, 2021.

10 Responses to “Open question: The struggle over doing it yourself”

  1. I didn’t realize your dad was on hospice?

    Liked by 2 people

  2. It must be a better place for you now to have crossed your mental line of responsibility. If I can relate my mother’s later years to your father’s, after a fall in her late eighties she just took to her bed and refused to have physiotherapy to help her walk. While my sister and I partly resented this, as her dependency seemed self inflicted, she was happy abnegating all responsibility in her last years (and I can’t blame her completely). Although it sounds like your father had/has more of a fighting spirit.

    Liked by 1 person

  3. When my dad first moved into the nursing home, he wouldn’t stop walking, day and night, up to the point of total exhaustion. Apparently, that’s typical with dementia. A few weeks later that stopped and he was in a wheelchair in to time at all. I’ll keep my fingers crossed your dad will continue to walk, though the odds probably arent’t that good hugs

    Liked by 1 person

    • Yeah, the odds are not great. On the other hand it also solves certain problems if he just quits. So I don’t know. I had a conversation with a classmate whom I haven’t seen in 30 years on Sunday — ran into her in a coffee shop — and she also told me some similar stuff with regard to patterns after people move into nursing homes.

      Sigh.

      Liked by 1 person

  4. I don’t want to go into my experience with my own dad here with stuff like this. Suffice it to say that I know it is hard… (((Hugs)))

    Liked by 1 person

  5. Thanks to everyone for the sympathy and good wishes.

    Liked by 1 person

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