Category: Caretaking and Dementia

This tree awaited the approaching darkness.

I’m really not doing well lately. I’m really stressed by the financial “bookkeeping” side of running the store – especially preparing for and dealing with tax-related stuff. I hate preparing taxes even when they’re easy – and this year, for the first time in my life (arguably), they are definitely NOT easy. Running a small business is a bureaucratic tangle worthy of Kafka.

Meanwhile, I feel like I’ve increasingly lost a technical grasp of the websites I run – they coast along but there are aspects of how they work that I truly cannot understand, and that leaves me feeling helpless when things go wrong – as happened this evening with the main map website.

Arthur is unpredictable – as I’ve mentioned many times before, being a caretaker to Arthur is a bit like being an active-duty military person: 95% waiting around and doing stupid make-work, and 5% sheer panic and SOLVE THIS PROBLEM NOW!

[daily log: walking, 5km; retailing, 9hr]

This tree saw rain shifting to snow, out by the little greenhouse with a moldy heart.

Arthur forgot how to pay at the store yesterday. Just stood there, while the cashier got frustrated. It was a bit stressful, but I stepped in and pulled the levers – helped him dig out his credit card, sort of gave directions.

It’s always doubly frustrating because half the time he’ll deny there was a problem minutes later. It’s just like this temporary glitch in the operating system.

[daily log: walking, 4km;]

This tree is a small live spruce tree that uprooted and put in a planter. It’s doing duty as our Christmas tree, for a second year. It’s not clear to me how the tree feels about this.

Art and I had a 90-minute telephone appointment with some of the doctors at the neuropsychology department at the Portland VA. This was follow-up on the tests that were run during our visit down south, in November.

There was a lot of detail, not least starting out with about half an hour’s worth of CYA gobbledy-gook (“cover-your-ass” medical discussion of the validity of the tests, baseline, etc) which, with its abstraction, immediately left Arthur uncomprehending, which wasn’t a very good start.

I won’t go into details – they confirmed my intuition that his dementia (since that’s what we’re officially calling it now) has progressed substantially since a similar evaluation in 2020, and my gut feeling is that he was actually much more functional directly after his accident in 2018 than he is now.

There were three salient moments.

First was when the doctors raised, off-handedly and as if it was a previously discussed thing, Arthur’s “depression.” I use quote marks because Arthur actually became visibly agitated when it was mentioned, and angrily said, “I don’t have that problem.” My personal addendum, which I was probably unable to convey to the doctors clearly with Arthur sitting right there, is that Arthur has always struggled with some degree of undiagnosed depression, but it’s something he has never been open to discussing. The mere mention of it left him much more closed off and uninterested in the rest of the talk – he spent a lot of time looking for specks of dirt to pick out of the carpet at his feet, as he does now when he’s had “enough” of whatever telephone or skype conversation we’re having.

Second was when we got into some summary of etiology (medical cause of the dementia). The verbiage was thick in the air, but what I finally gathered is that they’re most comfortable assuming multiple causes, broken into three categories. 1) He’s had repeated TBI (traumatic brain injury), due to the main fall that broke his neck in 2018, but likely other “head bonkings” (Art’s words) such as when he fell off the ladder in our first year up here, down in the road last year, or even when he modified the sheetrock in the bedroom last month; Art seems to prefer encountering hard objects with his skull rather than using his hands to catch himself, because of the severe arthritis pain in his shoulders. 2) They mentioned vascular problems in the brain, a kind of medical shorthand for stroke and stroke-like events, such as the scarring noted in CT scans at the basal ganglia; these stroke-like events are not singular, but something that seem to occur occasionally, and perhaps back in time to well before the fall/stroke in 2018. 3) They used the word Alzheimers repeatedly (and for the first time), and while observing that if it’s Alzheimers, it’s a “non-typical type” but it’s still within an Alzheimers type dementia; I could tell that Arthur recognized the word and found it alarming, by watching his reactions as we talked.

Third was that despite his extremely slow processing speed and quite limited ability to recall recently mentioned facts, stories, words, sequences, etc, his comprehension vocabulary is still amazingly high – which is to say, once you penetrate past the extremely slow processing speed, entailing multiple repetitions and a lot of patience while you see the “loading” icon spinning in his eyes, he’ll know what you’re talking about. His underlying well-educated mind is still there, but just weirdly shrouded by these processing and memory issues.

During all the interview, I did most of the talking. Arthur sometimes seemed to follow, though he did his schtick of pretending not to understand when he didn’t like what he was hearing. It’s quite difficult, with him, as he’s always done this thing of pretending not to understand, as a jokey way of getting out of certain sorts of discussion, and of course, now, he often really actually doesn’t understand. So his pretending to not understand (and not care) is a facade to conceal his actual non-understanding.

In the wake of the call, Arthur was grumpy. I went to work. At dinner, when I got home, I gave him a summary of the talk – which he asked for. I skipped over the depression part, but spent a lot of time talking about etiology, and focused on the final part – the doctors’ recommendations. Most of these are quite self-evident: exercise, develop strategies for dealing with forgetfulness, adapt social interactions for dealing with very slow processing speed. But these efforts of course run up against Arthur’s return to comments like: “Wait, I don’t process things slowly” or “I don’t need routines, I do things when they need to be done”. Then other moments, he’d say “I have no brain” or “I forget everything.” It’s all provided together, a word-salad of mutually incoherent cliches that are what’s left of his self. And they all require a proactive interest in self-care, which is Arthur’s single hugest weakness, to be frank. And I can only nag so much – it’s very much a “pick your battles” thing at this point, and so I can’t always focus on these types of things.

Life goes on.

[daily log: walking, 5km; retailing, 8hr]

This tree was in a plaza I walked to near Imjingang (임진강), South Korea, which is at the DMZ border with North Korea. This was a walk I took in October, 2007, during my first Fall living in South Korea. I was revisiting haunts from my year stationed as a soldier in the US Army in the area, back in 1991.

I have come to the realization that my 2 1/2 week long vacation down south wasn’t relaxing or recuperative at all. It was very stressful. I mean, I was glad to see all the people I saw, and I value those interactions highly, but Arthur was a pain in the butt with his constant argumentativeness over just about anything that could occur to him, any time we spent time together – which was more than usual because of the travel and such. He is constantly upset when I challenge his take on reality, but that take on reality feels increasingly detached from anything that feels objective or true. And since he rarely remembers a conversation from one minute to the next, we have the same arguments over and over and over.

Anyway, all I mean to say is that I will be quite pleased to relax and work at the store for 6 days a week for the coming month, and let Arthur stew at home with his incoherent obsessions. I can count on routine to protect him from self-damage, hopefully. There’s only so much I can do to protect him. He’ll sleep in the bed he’s made for himself – an aphorism he’s fond of citing. I am burned out.

[daily log: walking, 1.5km;]

This tree was in a neighborhood in Portland, southwest of downtown.

Arthur spent about 5 hours receiving a “cognitive evaluation” with some psychological specialists at the VA. I had a pretty boring time just waiting around for the whole thing to finish, so I walked around outside.

[daily log: walking, 5.5km;]

This tree is in front of Arthur’s infamous yurt, his bedroom-away-from-home since times immemorial (about 20 years).

Before the yurt, he had an ancient school bus converted to an RV, parked in a similar location in Juli and Keith’s yard. So Arthur calls the yurt “the bus.” Keith worries about Arthur being in the yurt, but I think he’s better off there than in some location (e.g. the guest room here) which is less familiar to him. Since he himself built the yurt, it’s quite to his liking and very familiar.

Art and I did another appointment at the VA hospital and clinics this morning. This time, he got an echocardiogram. The tech was very chatty and explained to me what he was doing and seeing as he did it, which made it pretty interesting for me. Art’s arhythmias were quite noticeable.

[daily log: walking, 5km;]

This tree was along the road just up above Juli and Keith’s. Apparently, it is Autumn.

I took Art to the VA hospital and clinics in downtown Portland, today. We saw doctor Kim, who is a very personable doctor and who is one of the few doctors I’ve interacted with, with Arthur, who seems to “get” Art’s mental style. It was a bit intense, as Dr Kim used the word “dementia” with Arthur directly for the first time. I really haven’t ever dared to use that word – Art has always been of the clear and firm opinion that that is something that happens to other people, not to him. So I guess I was relieved to let Dr Kim bring it up, in a medical setting. It could be between him and a doctor, and I wasn’t implicated except as a witness.

Next step is the comprehensive cognitive function evaluation, scheduled for next week.

[daily log: walking, 4km;]

This tree is in Juli and Keith’s yard in western Oregon, where I’m visiting. The Fall weather is milder here than in Southeast Alaska.

I went to town to do shopping errands today. Into the giant Fred Meyer store (like a Walmart or Target, for those unfamiliar with Pacific Northwest). After all the time living and working in a tiny town on a Southeast Alaskan island, it’s a bit overwhelming, but not in a bad way, at least for me. You have the thought: this store feels bigger than the whole town!

There was an amusing incident. Arthur insisted on coming along on the shopping trip. He’s been quite anxious, since leaving home, about his lack of a certain brand of chocolate that we’ve been planning to “refresh his supply” on this trip. It’s a kind of separation anxiety, almost. We had run out of his brand back in August or so (we keep a lot on hand, and refresh once a year shopping down south, or order online), and we’d been unable to re-order online: vendors were “out of stock.” It was a distressing situation for him.

So he wanted to come along, so we could stop at the big stores and look for his brand of chocolate. We found it at Fred Meyer, and we bought 24 “giant size” bars of chocolate – maybe (only maybe) good for a year back up in Alaska. But it was all they had in stock.

The thing that was so striking: the moment we put the chocolate bars in the shopping cart, Arthur’s anxiety melted away. You could see him visibly relax. And then he announced he was tired, and he went and sat down at the front of the store to wait for me to finish the rest of my shopping.

So I got to spend a few hours with Arthur in a less anxious state. Of course, within a few hours, he’d found himself a new thing to worry about: flashlights! He wanted to make sure all the flashlights worked, that he could find in his yurt (his room-away-from-home at Juli’s, since time immemorial).

[daily log: walking, 3km;]

This tree is dailier than others, along the road to town.

Art had a difficult night last night. He has a thing that happens sometimes, where he wakes up disoriented – much more than usual. He needs to get up to go to the toilet but he can’t find his way from the bed to the bathroom. He crashes into things. Of course it doesn’t help that he is stubborn, in persisting in the belief that he can navigate in the dark. It’s impossible to get him to adopt a habit of turning on a light to find the bathroom – he believes with his heart and soul that his excellent spatial memory can get him from on place to another in a familiar environment, in the dark. Leaving a light on is useless – he’ll grumpily turn it off the moment I go to bed. He insists on sleeping in absolute dark – to the point of closing the blinds against the moonlight.

Anyway, his excellent spatial memory is long gone. He wakes up disoriented, can’t find the door out of the bedroom, stumbles around. I awoke to a loud crash at around 11:30 PM, and went down stairs. I found him lying on the floor. There was urine all over the floor near the door. He seemed to have head-butted the wall where a small heater unit is installed, damaging the wall and the unit such that repairs will be recovered. I don’t even know how he did that.

It took us more than an hour to get him back into the bed. In his disoriented state, he couldn’t figure out how to stand up. He’s week, and with shaky balance, but when his mental faculties are more normal, he’s able to get himself up off the ground or floor. But last night it was a struggle. I kept trying to explain to him what he needed to do: “Roll sideways, get a knee under you, lever yourself up by grabbing the edge of the bed.” These instructions just made him sullen, as if I was giving impossible advice. And I’m not strong enough to lift him. So we had to wait out the lack of ability – in the end we got him close enough to the bed that I was able to kind of lever him up onto the bed, against much protestations of suffering and agony (he had bad arthritis in the shoulders).

I got the floor cleaned up. I disabled the damaged heater so it won’t be a hazard, pending repair, and later I gifted him a portable one that I have been using to heat the RV, to control mold.

In the morning, he asked me what had happened to the heater – he apparently didn’t remember anything that happened. It’s unrealistic to expect him to be grateful for the help I give him, when he can’t remember needing my help.

It was a hard night.

[daily log: walking, 4km; retailing, 3hr]

This tree expected the sun to set, in an anthropomorphized manner.

I had a very stressful day.

This was due to a conversation with Arthur, this morning, at airport after seeing his brother Alan off. We had driven into town for the early flight at Klawock Airport, and I’m sure that in Arthur’s reasoning, it would have been helpful for him to drop me and for him to come get me from work later – saving me a trip out to the house to drop him off and come back. He was just trying to be helpful, at first, and forgetting (as he so often does) his disabilities, or the years elapsed since their onset.

Arthur: I can drive. I’ll drop you at your work in town and come back later to pick you up.

Me: You haven’t driven in 4 years. I’m not really comfortable with you driving.

Arthur: I can drive fine.

Me: I told you before, you’re free to drive, but I don’t want to ride with you. I don’t feel safe.

Arthur: (blank look)

Me: Four years ago, when we were driving to town, we had an incident where basically you seemed you forgot you were driving. You were trying to multitask, digging around in your pocket, and we went into a ditch slightly. I got scared. I told you I didn’t want to ride with you when you were driving after that.

Arthur: I don’t remember that happening.

Me: I’ve told you about it many times since then, but yes, you’ve forgotten. That doesn’t mean it didn’t happen.

Arthur: (a confrontational look, right at me) I think you’re making that up.

Me: Why would I make that up? What reason?

Arthur: (Angrily) I don’t know!

Anyway, I think with all the guests we’ve had over the past several weeks, this broader social context has “stirred Arthur up,” in the sense that he’s suddenly feeling more constrained by his lifestyle than his usual pattern of disregard and lethargy. I also think with my recent increased responsibilities at the store (and his financial loan) has got him feeling more “entitled” at some level to concessions on my part. In principal, this makes sense.

I understand where this is coming from, but frankly it terrifies me. Although this is maybe the third time he’s directly accused me of making up a memory of something that happened as a way to thwart what he expects to happen, this is the first time it’s been about such a serious subject – the previous times were about whether we’d watched a certain TV show episode before, or bought something or not at the store. I’m not sure how to handle this. Especially in the context of the other stuff happening right now.

Later, after I cooled off some, I tried to talk about it more. But he then he kept wanting to change the subject. He did say at one point “I want more access to the car.”

I reiterated what I’d told him before: “I won’t tie you down and prevent you from driving, but I won’t ride with you. And with what’s happening with the store, I realize you have less access to the car than usual.”

So now I’m thinking – maybe I need to buy a car. Just so he has the car sitting there in the driveway, to assuage his sense of abstract liberty – I suspect strongly that he won’t actually use it. That would be the same as with the boat: I’ve told him many times that he’s free to go out on his own in his boat, too – how can I prohibit that? I only reiterate that I think it’s not safe. And he’s never done. Perhaps he’d do the same with the car, sitting in the driveway?

[daily log: walking, 4km; retailing, 9hr]

This tree was behind a purple-leaved blueberry bush.

Because of his memory issues, sometimes I’ll end up having to have the same exact conversation with Arthur 3 or 4 times in a day. And he gets offended if I point out that it isn’t the first time we’ve had a given conversation – but somehow I can’t resist pointing it out, as it gets emotionally exhausting reviewing where the spare chargers for his ipods are for the 4th time, while he seems anxiously puzzled that he didn’t know where they were (or that he has them at all), though he’d placed them there himself.

[daily log: walking, 4km; dogwalking, 3km]