Category: Banalities & Journaling

It’s been a difficult couple of days. Yesterday I took Arthur to the VA clinic to see the Neurology department. This was something we were supposed to have done last year, but they’d been unable to schedule an appointment during the window of our time down here in Portland, and after an extended back-and-forth over the telephone, it had been decided to just wait until this year and try again.

The challenge was that, for really the first time, the doctors were addressing Arthur directly while using the term dementia. Arthur couldn’t really engage in denial in the moment, which is his standard strategy. He flat out denies he ever had a stroke, still, for example. He often comically denies that he is going deaf: “I’m not going deaf! There’s just some problem with my ears!” is a literal quote.

In the moment, he’s too polite to directly or combatively deny that he has dementia, but I could tell he was deeply upset and afterward and since, he’s been exceptionally obstreperous.

I messed things up much further, this morning, because I did the mistake I’ve been successfully avoiding for more than 4 years: I ran his hearing aids through the laundry. The problem here is that Arthur often takes out his hearing aids and instead of putting them into the little case they’re supposed to live in, he puts them into a pocket. When I do laundry at home, I have a fixed habit of going through his pockets to make sure nothing is in them – I’ve intercepted his hearing aids many times, this way. But here at Juli’s, thrown off my regular routine, and responding to Arthur’s complaint about a lack of clean clothes, I failed in my pocket inspection. His hearing aids went through the wash. One of them was quite damaged – plastic parts broken off and one bit missing. And of course who knows what damage to the electronics inside.

As things stand, I did a MacGuyveresque repair on the broken one, using some scotch tape and super glue, and we’ve tested them. One of them seems to work, the other seems to be stuck in some kind of reboot cycle. Good thing we’re scheduled to see an audiologist in a week. But… I’m super frustrated with VA audiology support, and skeptical that they’ll offer anything truly useful. As I remarked to Juli in the wake of the washing machine incident, “It’s not like Arthur was really using the hearing aids effectively, anyway.” The problem is that in combination with his cognitive deficits, it’s very, very difficult for Arthur to build new habits or learn new, fiddly procedures related to the correct use and care of his hearing aids. The result is that he doesn’t ever reach a point where he’s using them the way the designers imagined: always in, with all kinds of “bells and whistles” around an app on the smartphone that can link it to audiobooks, music, the TV, whatever. None of that is anything we can ever expect Arthur to master, at this point. He can’t even figure out how to turn on his smartphone, much less use it. Anything that wasn’t in his technological repertoire before 2018 will NEVER be in his repertoire. Old dog, no new tricks.

I feel terrible that all this is happening – that I was insufficiently diligent in doing things I knew needed to be done (i.e. about inspecting pockets, about getting anything useful from VA audiology). A failure of care.

I have traveled to Oregon, for the next few weeks. Unlike previous stays at Juli and Keith’s house, I’m Arthur’s actual roommate here, this time – there are more limited options for one’s own space, these days, here (for those who are unfamiliar, Arthur is my elderly uncle, who has dementia and for whom I am a caretaker).

It’s noisy at night here, compared to at home. I had difficulty sleeping. Dogs bark all night, roosters start the day at 2 AM, neighbor people are talking outside of their houses and you can hear them, late at night. Being Arthur’s roommate is noisy too: he doesn’t actually snore, but he falls asleep with his audiobook playing into his ears at maximum volume (because he’s almost completely deaf at this point and somehow he derives some comfort from this cacaphony). It’s disconcerting to hear the story right on the edge of comprehensibility, like a television blaring in the next room. It’s probably just a soft background noise, for him. And he’s a restless sleeper (just as he’s often quite restless when awake, with all kinds of OCD-adjacent repetitive movements and tics). He noisily turns in the covers every few minutes. He farts and belches loudly in his sleep, too, and mutters softly to himself, things like ‘oh fuck’ and ‘shit!’ I feel like I’m rooming with Sancho Panza. I already knew all these things, but at home, with him being in his own room, I can somewhat dismiss it – it doesn’t effect me, he’s far enough away from where I’m sleeping that it doesn’t bother me, but I can still be tuned in if something goes wrong (eg one of his late night / early morning falls, as the most common example).

<venting>

With Arthur’s brother Alan and Alan’s daughter Dawn visiting here, Arthur has suddenly gotten very obsessed with the bed down in the boathouse (~basement), where he used to sleep. He imagines the possibility of moving back down there to sleep, as a matter of being hospitable to our guests by yielding the main bedroom upstairs, which has become his bedroom now.

So Arthur has finally noticed how I’d strategically disabled the kerosene heater down there, and how I’d stripped apart his old bed. Last night, after dinner, he wanted these things fixed and wouldn’t let go of the notion. Yet he’s also gotten more dependent. Consequently, instead of trying to fix them himself (which is a relief, especially with respect to the kerosene heater – recalling the incident several years ago when I found him standing in a puddle of kerosene at 2AM) he just waits around and pesters me, urgently, about when I’m going to fix them.

I understand that it’s good for Art’s “quality of life” to have people to interact with who care about him, as visitors, but frankly, it’s ruining mine.

I’m so, so dreading the need to travel to Portland with him in November.

I recognize this is more my problem than Arthur’s – I don’t deal well with “contingency” responsibilities, uncertainty, and disrupted routines. I’m going to be a truly horrible old person.

</venting>

An anecdote.

Art was stumbling around the kitchen opening cabinets and drawers.

“Watcha looking for?” I asked.

“What?”

I repeated myself, much more loudly.

“I don’t know what I’m looking for,” he answered.

“The oreos are in the upstairs cabinet, now. You put them there,” I guessed.

“Very good,” he said. “Now I know what I was looking for. I didn’t realize I was looking for oreos, but I was.”

Small anecdote from my life, today.

Arthur tried (stubbornly) to try to pay the previous customer’s groceries, at the checkout at the grocery store today. He simply wasn’t receiving the communication from me, from the previous customer, and from the cashier that it wasn’t his “turn” to pay – we were next in line, the previous customer was still finishing checking out of the store, but Arthur was ready to pay, now. He was left bewildered and confused when we told him to stop trying to pay. I had to take his credit card out of his hand.