All those places aren’t home

October was a rough month here. The main issue was the drama over the clothes washer, which threatened to blow up our living arrangements. After a year of being abused, the poor thing gave up the ghost. The replacement was an inch deeper than the space built for it; dad’s insistence on curing this problem himself led to unnecessary punctures in the drywall of the laundry room, the tearup of the platform the washer and dyer were on, and the destabilization of the dryer (important to know: it vents to the outside of the house). He also refused to have a finish carpenter friend of ours help him when it became clear he was in over his head. We were three weeks without a washer and everything I tried to do to ameliorate the situation just intensified his fixation, until Heavy Lifter lost it (rare for him) and intervened. This problem was coupled with a knockdown, drag out fight over the coming of the senior helper at 6 a.m. on every day I left for work. At the end of it all, the stress was enough to move me onto the “maybe he should go to assisted living” and HL onto the “he definitely should go to assisted living” pages. The GCM has thought this for a while already. She pointed out that if I am going to work every weekday in spring, dad’s inability to accommodate himself to the senior helper will more than double the stress of leaving the house, and she pointed out that not being able to stop dad from doing things could become deadly, if, for instance, the thing he got fixated on was snow removal (no joke in this part of the world).

We did get a washer with a child lock. Should have done this months ago. And that same week, I went to a workshop on responding to people with dementia, and the speaker‘s slogan was “people living with dementia are doing the best they can.” OK, she also apparently thinks there’s something beautiful about dementia, which I frankly think is a ridiculous thing to say to caregivers. However, I took her point about the sufferer not being able to change their behavior. Which made me think that this wasn’t (just) stubbornness or a power struggle — that maybe dad genuinely sees our this situation in positive or at least acceptable terms.

The GCM came and we had a meeting to discuss assisted living with dad. It was revealing. I realized while listening to dad talk about his perception of our situation that I’ve been trying to avoid a crisis of the sort we had on the day he sliced his arm up — that he would eventually hurt himself badly if left unsupervised, and we could set up safeguards against this. But that may not be the crisis coming our way: it may in fact be that his behaviors create a situation that is emotionally intolerable for me — for instance, because I have to leave, don’t have backup, and can’t control what house renovations he will decided are absolutely necessary, and both dread coming home and have to come home — and that this problem may be the trigger for assisted living. During the meeting, he seemed wholly oblivious to that possibility. He agreed that we had been fighting a lot, but he did not appear to see my emotional state as a factor that needed to be considered in decisionmaking. Which confirmed both what the neuropsych eval had said (lowered empathy) and what the dementia speaker had been saying (he believes he is doing his best).

One of our non-negotiables from that meeting (besides: no snowplowing) was that dad visit a few assisted living places (scouted for him by the GCM — she also took him to look) and getting on a waiting list for at least one of them. So he did that. And then HL and I visited them together, afterwards.

It’s probably clear (to US readers at least) from the way I’ve been dealing with dad’s problems that dad is not poor. He has money to pay the GCM, the senior helpers, for a new washer when the old one breaks, for more expensive blood thinners, and so on. Given how rough this has been for us, and given things I’ve heard in the support group I’ve been going to, I sometimes can’t imagine how people with fewer resources deal. I’m grateful, in retrospect, for dad’s good job, for my mother’s frugality and for the bull markets that persisted during most of my parents’ lives (it won’t be this way for me, when I’m asking the same questions). But in any case, when we look at the assisted living facilities and the possibilities open to him, while we’re not ignoring price, it’s also not the primary factor in the decision.

All of the places have spacious, accessible, safety-oriented and well-appointed apartments or rooms with a desirable level of privacy. Dad could move in some of his own furniture. They’re clean. The apartments have up to date appliances (as a friend pointed out to me recently, dad could regain control of his own washer and fixing it would be someone else’s problem). They are all pleasantly situated; in some of them, we could plant dad’s favorite weathervane right outside his window for him to see. They are beautifully landscaped with plenty of opportunity for strolling; one of them even has a pond for fishing. They all have well-organized activity programs and daily group transportation to let people get out and/or run errands (library, shopping, restaurants, etc.). None of them show up on the websites that track health and safety violations. They are owned and run by nursing professionals, not by large corporations. All of them have scratch kitchens and they also all request “favorite family recipes” of new residents and offer to add up to three of them to their regular rotation. This offer is probably less onerous around here than it would be in a more ethnically diverse part of the country — I’d guess that the top three favorite dishes of most people at these facilities are Wisconsin chili, fried fish, and bratwurst. (And anything with cheese on it.) All of them also have more intensive facilities attached for if / when dad needed more attention.

I’d be totally okay with him moving into any of these places from a wellness and safety standpoint. It’s also somewhat possible that his eating would improve with a nutritionist looking out for him full time, and I think quite likely that his mood might improve with all the additional sociability that he doesn’t have at home. It’s clear that these are not the “nursing homes” of our youth; the facility smell that I remember from childhood is absent and the residents seem alert and engaged with the world. No elderly people dozing in wheelchairs, waiting to die — the way it seemed to me when I was a girl — although those people must be somewhere.

But if it’s true that all these places are irreproachable, at the same time, as HL said to me after the last visit, with a certain anguish in his tone, none of them are home. None have dad’s workshop, none have our fifty years of tree planting, none have the deer that have been sheltered in the northwest corner of the lot, or the lawn or the view. None have the corner bedroom where the sun wakes him up, none have the wild turkeys that come right up to the window of the breakfast nook.

HL — who had been a much stronger proponent of assisted living than I was — asked me if I could hack it a little longer. I said on the days when everything is fine, I think there’ll be no problem. It’s just that there’s so much disruption and so much anxiety associated with it and so much power struggle. So much responsibility and so little autonomy. HL pledged to me that he will work to get everyone on the plan (including himself, but especially dad). For the last ten days, we have had Nemenda in our lives. I don’t know if it’s the cause (especially because, if I understand correctly, dad doesn’t belong to the diagnostic target audience), but there have been no arguments about me working or leaving since he’s been taking it.

It’s always a question of what you can take, right? Our family’s socialization was always to act as if no emotional burden was too large to bear where a family member is concerned. Everyone keeps saying he should go to assisted living to avert a crisis. Rationally that is what I want, too. Emotionally, though, I don’t know if either NL or I have made it there, yet. I’m still torn. I don’t know if I can take a spring semester when every morning starts off with a fight. Or maybe it’s that I know that I can’t. What emotional burden is too much to bear? Or do we just wait until dad’s misuse of a power tool becomes his undoing, or until he gets hypothermia from trying to plow snow when he shouldn’t? But I continue to be convinced by the point that this is dad’s home, and he shouldn’t have to leave it if there is any other workable solution. So I guess that’s where we are. Right now.

~ by Servetus on November 11, 2019.