Category: Caretaking and Dementia

The other day Arthur fell off the toilet, or fell while beginning to sit on the toilet, or something like that. This had disastrous consequences. There was a lot of cleanup necessary, most of which he was too angry and embarrassed to allow me to do. So I left him to stumble through it.

That means, however, that it was not a very precise effort at cleaning up. Arthur’s situational awareness is quite poor, these days. This morning I found feces on the floor behind the toilet, and on the wall in unexpected places in the bathroom.

So I spent some time cleaning up, at 6 am, while Arthur still slept. I felt on the edge of a breakdown. It’s very annoying dealing with other people’s shit.

I got home from work, he had the couch turned over on its back, I guess he was trying to find it. I spent another solid hour searching high and low. I’m actually skeptical that the hearing aid was lost in the way he claims – that he was trying to put it in his ear and dropped it. Not that I think he’s confabulating – I just think his memory and grip on reality are such that he could have been doing who knows what and the hearing aid ended up missing. I can’t figure out where it went. For all I know it got flushed down the toilet.

That makes the third one lost. This one cost a lot more than the previous two lost – not just in money but in the time and effort it took to make a special trip to Portland to get the new pair. I’m pretty sure we can sweet-talk the VA into another pair, but given the delays, and given the fact they won’t “fit” them unless we show up in person, that means no new hearing aids until at least November (when we’re next scheduled to travel there).

I feel like that at some weird subconscious level Arthur prefers being deaf. Maybe this is uncharitable, but the resistance he’s put up to using and having hearing aids, at every turn, starts feeling quite willful.

I should just drop it. My problem isn’t that I harbor any concern for him or his comfort at all – for all I care, let him be deaf. My problem is that I very much dislike yelling at the top of my lungs and repeating myself 4-5 times for every single utterance when trying to communicate with him. It’s exhausting. I told him tonight (yelling, and repeating), that I might just give up talking. I swear he was pleased at the idea.

It’s not as if it’s been smooth sailing since getting back home after Portland, 3 weeks ago. Other issues have arisen.

Arthur has developed a new, difficult-to-cope-with habit: when his arthritis pain is acting up, he throws a tantrum. A perfect 4-year-old “I hurt myself and it’s definitely not my fault” tantrum. He pounds on the table, kicks at the table-legs or the floor, and flounces around like a miserable toddler.

I much preferred the stoic Arthur. And I have no way of coping with this either, except to leave the room. Which emotionally feels like abandoning him in a moment of pain. But what can I do? He has some pain meds, but my impression is that they don’t work very well, if at all. The doctors aren’t going to prescribe him hardcore pain meds for arthritis, I don’t think. My uncharitable theory is that his pain hasn’t actually gotten worse, it’s only that his coping mechanisms are continuing to devolve.

I was quite naive in signing up for this.

I made it back to Alaska. But I feel weirdly alien – like the last six years of living here have meant nothing. Perhaps it’s just the exhaustion of travel – 47 hours door to door, and now unrested and jetlagged, my mood is bound to be weird and low.

And I ended up in an argument with Arthur – he accused me of messing up the television somehow. I said “How could I have done that, I haven’t been here?” He said repeatedly that he hadn’t done anything, so it had to have been me.

Sure, it was me. I came home, the TV saw me, and broke.

It seems that if Arthur missed me at all during my absence, it was primarily in that he needs someone to blame when things go wrong. This whole caregiving thing is looking brutally thankless, lately.

I cuss too much now – Australians all cuss a lot, and now I’ve picked it up. I don’t like it.

I’ve uninstalled facebook on my phone. Though I value how it helps me stay in touch with far-flung friends and family, it seems increasingly insidious as a platform for propaganda and the long-term misalignment of values. If I didn’t rely on it, too, for the store’s advertising, I’d surely delete my account completely and be done with it.

It’s Tuesday night, 8 PM, in Far North Queensland. The dark falls rapidly in the tropics.

It was an emotionally horrific day, today.

But first, yesterday, since I didn’t report. Long story short: we got my mom checked into Carinya for her “respite” – a short, 3 week “sampler” at a nursing home that had been scheduled and set up BEFORE all this excitement and complication involving her fall, her stay in the hospital and my unplanned trip over here to deal with that. So despite the complications, the hospital urged us to attempt to avail ourselves of the “respite” anyway, and Carinya kept up their end of the deal. The problem, of course, is that now it is imperative (per Australian “authorities” – social services, doctors, etc) that Ann be in permanent nursing home care, but unfortunately Carinya ONLY had on offer this “respite”, with no permanent beds available.

So I’ve been shopping around for a permanent nursing home slot.

Meanwhile Ann got settled in Carinya. It’s not clear she considers it any better than the hospital – same issue with intrusive staff, same issue with not being able to just do her own thing… but that’s the whole point of being in care. The good: you’re getting care. The bad: people tell you what to do. Different people have different ways of deciding if the good outweighs the bad. It’s pretty clear that Ann feels the bad far outweighs the good. I suspect she may never change her mind about that.

This morning I had a meeting with the Centrelink people (they who denied my basic humanity on my last visit). This time I brought along an Australian (Ann’s close friend Kristen, who is Ann’s “nominee” for Centrelink since they only accept Australian citizens in that role, and which, apparently, a Power-of-Attorney fails to override). In this way, I got to have a good conversation with a friendly and competent Centrelink employee, which was refreshing.

Outcome: Ann’s finances are not much changed over the past year, and so we got about the same information as we’d managed to extract last year from them, but in a neater, more “ready-to-submit-to-care-facilities” format.

Which I immediately did. After the morning at Centrelink, I saw Ann, Kirsten and Tash at Carinya for a short time, then I raced down the hill to Redlynch (Cairns north suburbs) and interviewed with Christine there.

With the additional documentation, and a “pass” from the “clinical evaluation,” Regis Redlynch (a care facility) was ready to offer a permanent room.

Here is a picture of the actual room on offer – looking out the window. It’s not much different from the view out the window at Carinya, to be honest. A parking area and some tropical greenery beyond.

Some people have asked why I don’t post pictures of Ann on this. The reason is simple: Ann doesn’t like having her picture taken (she never has). And I’m trying to respect her boundaries in every way I am able, given they’re being violated in so many other ways.

So. With Christine’s offer in hand, I returned up the hill to Atherton, and found my mom alone in her new room at Carinya. She seemed unexpectedly lucid, so I decided that it would be as good a time as any to try to discuss with her what was happening. There was still a need to repeat the same information multiple times – it’s not much different from dealing with Arthur, in that respect.

When I told her how things were shaping up, she was, of course, heartbroken. It was never her wish to go into any kind of care. Of course, we can say that that was a very unrealistic wish. But that doesn’t change the fact that that has been her wish. But the options are limited. My understanding is that Australian social services will simply not permit her to return home – if we don’t find an option, she’ll get housed in the hospital or whatever care facility they can scrounge together, and sell her home to pay for it. This sounds drastic: it’s meant to reflect the worst-case scenario – if she had no friends, and if her overseas relatives neglected her.

Presenting her with this stark choice – remainder of days in hospital and/or state-chosen care, or, alternately, this facility in Cairns, she quite sincerely insisted she saw no difference. Neither choice was close to acceptable. “That’s so mean,” she moaned. “That’s awful.” She cried.

That was it. That’s where things stand.

I have to make the choice. It will be “on me” and “my fault” that she’s stuck in care, or I can walk away and it can be my fault for abandoning her. I get to feel guilty regardless. I’ve taken variations of both of those paths at different points in my life, many times. It’s the set up as it’s always been with my mom. Nothing new there.

So I’ll make a decision tomorrow.

Here is a picture from a turnout about halfway between Ravenshoe (my mom’s house) and Atherton (the main town, a kind of “county seat”). It’s a view out down into the valley where Atherton is, looking northward, from the heights where Ravenshoe is.

Anther small picture: did you know that the Australian state of Queensland and the US state of Alaska are almost exactly the same size, in land area?

It’s Monday morning, 7:30 AM, in Far North Queensland. Yesterday, being Sunday, was a bit of a do-nothing day. I went and hung out with Ann at the hospital. There was a new nurse on the ward who hit it off with Ann really well, so I was mostly just off on the margins.

Today is a big day – she starts her “respite” (3 week visit) at the Carinya care facility. This is something my sister and I had set up for Ann last year, and the date just happens to coincide with this recent crisis. The hospital has urged us to take advantage of it, even though Carinya will most likely not have a permanent spot for Ann, and even though she might very well end up returning to the hospital after her stay, unless we can have something lined up for her.

I’m running a bit late, now. So more later.

It’s Saturday morning, 7 AM, in Far North Queensland. Yesterday I did a lot of driving.

I drove “down the hill” to meet with an admissions person at Regis Redlynch, a care facility. Short summary: in fact, they DO have a spot, pending “clinical approval” – which is to say, they can’t make any commitment without knowing a lot details about Ann’s diagnoses and prognosis. Especially, they are concerned about to what degree she’s mentally impaired (e.g. dementia) as that might require them to only consider her for a mental support unit (where there is not currently a spot available.

In talking with Peter the discharge nurse (social worker) at Atherton Hospital, his comment is simply: Yes, she has some memory issues and dementia, but it’s really not the kind that requires special support – she’s not prone to wander or become violent. Peter said he’d make sure to make that clear in answering Regis’ questions directly. He’s been very helpful, proactive, and supportive in every way, and I’m grateful he’s on staff at the hospital.

I was acutely aware, in visiting the Redlynch facility, though, that it wouldn’t be something my mother would ever choose for herself. Firstly, it’s in Cairns. It’s a plasticine, suburban environment, nothing resembling wild nature out any window, tract homes beyond the campus. And also, Cairns is ungodly hot – at least this time of year. I’m sure it was 100 F down there, or close to it, making the 90 F at Atherton feel bracing, in comparison. 3000 feet difference in elevation means a lot, even in the tropics.

But I feel the choices are limited. If Redlynch accepts our application, I’m going to have to jump on it.

There are a few advantages over Atherton. One is that she’ll maybe get more visits from her friend Emma and Kirsten, who live halfway “down the hill” (near Kuranda) and who commute into Cairns daily. Everyone in her life goes to the city regularly, because that’s what you do when you live in the rural hinterlands of a city. So it’s a more central location. Also, the Redlynch campus, specifically, is at most 10 km from the airport. That makes it pretty convenient for people visiting from overseas – including Samara and I.

I drove back up to Atherton and spent a few hours in the afternoon, talking with Peter and hanging out with my mom, and friend Tash came by again. I felt aware of the extent to which my mother’s “scripted dark cynicism” tends to take over in the absence of deeper thought – this is very similar to the way that Arthur’s “performative curmudgeonliness” takes over, with him. But it’s worth remembering that this “Gillidette” negativity is most typically directed at family and closest friends – neither Arthur nor my mother are quite so negative with strangers. Interestingly, she will cuss at me and that’s the end of the story, but anytime she cusses at nursing or other hospital staff, she quickly becomes apologetic directly afterward. There are certainly ways in which being close to a Gillidette is the least pleasant position to be in. Keep some distance and you’ll enjoy their company a lot more.

I’m being a bit lazy this morning – I have nothing specific I need to get done today except an intent to go into Atherton and spend some time with Ann. So I’m going to take my time. The hospital’s visiting hours are 12 noon to 8 PM, though they have so far been extremely flexible, so that when I show up at 9 or 10 in the morning they let me through without any issues at all. They all know me, now.

Monday, regardless of where we stand with Regis, Ann will check in to Carinya – the aged care facility that is right next to the hospital in Atherton. This is the care facility that my mom “approved” last year, and so this temporary visit (what they call a “respite”) was already waiting in the wings before the recent bone-breakages and hospital admission and all that. But Carinya made clear they do not expect any permanent spot to become available – this is JUST a respite. The hospital wants us to take advantage of it even in the event that we do NOT find a permanent spot for Ann, because it gives the hospital the extra bed to go to more urgent patients. So Ann will go to Carinya on Monday. If Regis accepts her and moves fast enough, she can discharge from Carinya after 2 or 3 weeks directly to Redlynch. If not, then she’ll discharge from Carinya after 3 weeks back to Atherton Hospital.

There’s no denying that Carinya is a much more “premium” and attractive care facility. It’s got a campus nestled on a hillside surrounded on two sides by tropical forest, and the structures themselves are just more appealing, architecturally, with interspresed patios and gardens. In an alternate timeline, Ann “coulda-shoulda” gone there. Alas.

More later.

Instead of a wallaby, here are some cows under a giant windmill. I took the picture while waiting at a road-construction flagger while driving between Ravenshoe and Atherton yesterday morning.

Here is a picture looking down Ann’s driveway. It’s hard to tell, but it’s raining in the picture. The summer monsoon (which the locals deny is a thing, weirdly) is in progress, these days, where it rains pretty consistently for a few hours every afternoon. I’ve been parking the rental car at the top of the long driveway, because some of its bumps and ditches are too much for the low-slung Toyota they gave me at the airport. You need something with a bit more clearance underneath, like my mom’s Toyota RAV. Anyway, walking up and down the long driveway is good exercise.

It’s Friday morning at 6 AM in Far North Queensland. Yesterday I mostly focused on trying to line up the applications for care facilities.

This post will be shorter than usual, because I have to leave right away to drive “down the hill” to visit one of the potential care facilities, at Redlynch, a northern suburb of Cairns.

I’ll post more tomorrow.

It’s Thursday morning, 5:30 AM, listening to roosters crowing in Far North Queensland. Yesterday I met the most intimidating bureaucrat of my visit here so far.

There is an agency called “Centrelink” here in Australia, they are a bit like Social Security in the US, I guess, but they seem to be much “wider” in terms of their powers and interactions with the citizenry. They’re the public pensions agency, basically. Like any agency, they are set up so that in the event a client is disabled or incapacitated, there can be a “nominee” who interacts with them on that client’s behalf. However, in a special twist, Centrelink simply doesn’t have any way of interacting with a person who doesn’t have a “Centrelink number”. The end result – although I am trying to represent my mom while she’s in hospital, Centrelink won’t even acknowledge my existence as a sentient being, because I don’t have a number (and cannot have one, as a non-resident of Australia). It was like being a kind of ghost, to try to talk to them. I heard “I can’t give you that information” over and over. Phrases like “Power of attorney” and “Son” (with accompanying documentation) mean nothing to them. Fortunately, Ann’s friend Kirsten is the official “nominee” and we’ve succeeded in making an appointment with the Centrelink office next Tuesday. I wonder, though… what would have happened if Kirsten, then, had been unavailable or incapacitated too? Does Ann and her information then disappear into a bureaucratic black hole never to emerge again?

I got another application and a half sent off to some care facilities, and had a somewhat circular telephone conversation with one of them – promising in that they might have a spot, but not-promising in that nothing will move forward without some input from Centrelink (see above).

In one text to Kirsten, I told her about the appointment date and time I’d secured, and I wrote “August” instead of “January”. Kirsten called me, alarmed, in and in her frank Australian parlance said, “What the fuck mate, August?” My only excuse for the mistake, I told her, is that looking around, here, the weather is “August weather” (ie high summer).

I spend some time with my mother at the hospital, and her friend Tash came by. Ann was in lower spirits today than yesterday, I think in pain and just annoyed as it penetrated deeper into her awareness just how disabled she’s become. But nevertheless the physio and some nurses had her walking several times, with assistance of a walker. I think she will regain some mobility, if she wants. But that last is key – there are times when it’s clear to me that she doesn’t want… she just seems to deflate and give up, and pep talks can only go so far. Often, to expressions of positivity or optimism, she just becomes angry. This is depression, I understand. It’s not easy to deal with.

There was an amusing incident, as Ann’s hospital room/ward gained a new roommate. An elderly woman was wheeled in in her bed, fast asleep. Some time later, she sat up, suddenly awake and smiling. We started chatting with her, and she clearly had some dementia. She talked a lot about her dad and mum. Tash and I introduced ourselves, and I asked her her name. Her eyes got wide, and she said, with alarm. “Jesus! Christ! I don’t know, hun.” She stared at me. I cheated and looked at her chart. “Betty?” “Oh yes. That might be it.” The she talked about her and her sisters, growing up in Herberton (just down the road a bit from Atherton).

Le wallaby du jour.

It’s Wednesday morning, 5:30 AM, downhill from the wallaby encampment in Far North Queensland. Yesterday was, again, less productive than I’d hoped.

Bureaucratic gears turn slowly. I did get one application submitted to a care facility down in Cairns that didn’t outright reject my interest with “we are full.”

Several people, trying to help, have insisted on trying to pursue some kind of in-home care option instead of a care facility. First and foremost, it’s not clear that the hospital would even allow my mom to be discharged to her home, even with a live-in assistant. They consider her disabilities to be too great, at this point. Something about “level 4” on whatever scale they use. But even allowing they might, finding someone who’d be willing to be a live-in carer at my mom’s house runs into numerous obstacles, including: the remoteness of her house (more than one hour from Atherton, the nearest town with a stoplight or doctor); the obstreperousness of her personality (at what price would a stranger be willing to put up with that?).

Anyway… time with her yesterday underscored the extent to which her dementia is real and quite disabling at this point. She’d insist she needed to use the toilet, ring the nurse call button, and unless I intervened, she’d tell the nurse, when they came, that she was fine and didn’t need to go to the toilet – only to once again insist she needed to go the moment the nurse departed the room. Later, a doctor came in and asked if she’d succeeded in using the toilet yet, and Ann would assert that she hadn’t – after having just returned from the toilet 15 minutes before. In eerie ways, it’s not that different than dealing with Arthur, but made much harder to cope with by her greater helplessness.

In good (?) news, a CT scan of her brain failed to find evidence for a stroke. I’m actually a bit bewildered by this – so many of her current symptoms feel “stroke-like” to me – the quite severe expressive aphasia, the weird half-paralyzed aspect of her left (only left) arm and hand, the drooping eyelid. At one moment yesterday, she was studying her left hand, as it lay curled and seemingly unresponsive on the little table-cart thing in front of her, where her lunch had just been removed. “That’s not mine,” she declared. “What?” I asked. She reached over awkwardly with her right hand (in the sling, because of the broken shoulder), and pointed. “Your hand?” I asked. She nodded. Something is going on. It could just be severe but “normal” brain atrophy, as the young on-call doctor termed it.

In other, better, news, she walked (!) across the hospital room – first time since check-in at the hospital. A physical therapist worked with her for about 30 minutes – simple things: moving her feet, stand up, sit down. And announced that she didn’t see any problem with Ann trying to use the walker. Cussing (and then apologizing) through the whole trip, Ann made it across the room to her bed with a walker, and me running “backup” behind with a wheelchair in case she might give up and want to sit down.

For some readers who might be curious, Arthur, meanwhile, seems to be doing fine, under a regime frequent check-ins and food offerings by our wonderful neighbors – Kim, Brandt, Penny, Greg and Sue. Kim remarks that he “sleeps a lot” – but this is not a new development. His days (and nights) seem to be a kind of never-ending cycle of “sleep-restlessness-rest-sleep”. I’m glad he’s doing okay. He might resent me when I’m back, I probably nag him too much (which is to say, at all).

Today I’d thought I’d be heading down to Cairns to have a look at (tour) of one or two care facilities, but none have offered appointments, and the discharge nurse (Peter) advised that drop-bys weren’t likely to be successful. I’ll try to get off some more applications today.

A daily wallaby picture.

I saw storm clouds and heard lots of thunder. Here, looking northeastish from the hospital parking lot. It was 36 C (97 F) and 100% humidity. It is height of summer, here.

It’s Tuesday morning in the bush-adjacent highlands of Far North Queensland. Yesterday wasn’t quite as productive as I’d hoped.

I had a good meeting with Donna at Carinya, which is the one care facility where we’d already gotten the ball rolling last year, and which Ann had actually approved of, for a spare moment or two before later accusing me of wanting to lock her up. But the upshot of that meeting is that she’s very pessimistic that a permanent space will become available in the timeframe that we need. So consequently, we need to broaden our search.

I had a meeting with a substititue social worker (“discharge nurse”), Tanya, at Atherton Hospital. The main person in that role, Peter, was off. Hopefully I’ll meet with him soon – I’ve had some positive interactions via email with him. We got the name of two companies that each run multiple facilities down in Cairns metro. I made some calls but so far all I have is an intimidating pile of paperwork and applications to fill out, no appointments to visit anything yet.

Tash came by the hospital again, and Ann seemed more alert and… well, not “happy” but at least less grumpy, about things.

I decided to leave earlier in the afternoon, to avoid ending up back at the house after dark. So I came back to the house, found something for dinner for myself, and was a bit of a vegetable for the rest of the evening.

Here’s another wallaby from mom’s driveway.

Now it’s Sunday morning, 5:30 AM, in Ravenshoe, Far North Queensland. Yesterday was a long day.

I started out with some grocery shopping for myself and a bit of breakfast and then I tackled the phone problem. I went to the Telstra store in Atherton and discover that yes, it’s Telstra’s fault. In some pique of misguided technology policy (for which Australia is notorious), they basically reconfigured their national cell network in such a way that MOST international phones don’t work correctly. Including mine. So those of us visiting the country “roaming” with our own counties’ mobile providers are screwed. If you have a brand-new iPhone or Samsung you might sneak by, but anything older than a year or two isn’t going to succeed. I don’t really get what they’ve done, something in how 3G vs 4G network traffic is routed, but I was in the position of a) buy a new phone and try my luck with switching my US sim card into it, or b) buying a local pre-paid phone with a new phone number.

Option “a” terrified me – I’ve had such horrendous experiences with switching sim cards to new phones even within the US that I decided not to risk. If anything goes wrong, I’ve lost my AT&T service completely, until I can get AT&T customer service (excuse me, what is this?) to help me fix it. So bought an Australian prepaid phone. If anyone wants or needs my Australian phone number, I’m happy to share. The phone itself, being a bottom-of-the-line cheapo, isn’t “portable” and worse than my current Motorola. My intention is to just leave it here when I leave, and I, or someone else visiting, can pick it up and hopefully get some use out of it on future visits.

This whole process was mind-numbingly slow. The Telstra shop was too busy for the level of staff it had, and their way of coping was to prioritize those clients who had previous appointments. Which I didn’t have. So helping me out was squeezed between 5 or so other clients, in spare moments. I was in the shop for almost 2 hours.

I had flashbacks to my first month in Korea, when I’d gone there to teach, in September, 2007. I was sitting in a phone store there, while they plodded through the bureaucracy of getting a new work-visa-holder (me) a new mobile phone. It was a lot of bureaucracy, and possibly the staff wasn’t terribly competent. Danny, my new boss (the principal at the first school where I taught – a contract that only lasted about half a year since he sold his school and my contract had to be re-done under the new employers) was watching me as I sat with him in the shop, waiting for them to get my phone set up. I vividly remember, he remarked, “You are weirdly patient” (his English was native, he’d grown up partly in the US).

I asked him what he meant by that. He explained that most of the foreign teachers he’d worked with wouldn’t have been so patient. I shrugged and said something wise (by accident, I’m sure) – I don’t remember what it was. He nodded and said that maybe I would work out as a teacher in Korea, after all. I remember at the time mostly being focused on the subtext: that he’d had doubts about me working out as a teacher in Korea. But looking back, it feels vaguely prophetic, given I lasted in the country for 11 years.

Okay, that was a digression. TLDR: I was sitting in the Telstra shop in Atherton for a long, long time. Then I got my new phone, and I started actually succeeding in communicating with people. I was helped very much by one of my mom’s doctors, who on her own time texted out my new number to all kinds of useful people and offices. So I’m grateful to “Dr Anj [Angela]”.

I learned that my mom was just starting her MRI down in Cairns. The weekend staff doctor (Mikaela) at Atherton Hospital was available to meet and I had a great talk with her, including getting a full list of my mom’s medications, their indications, various concerns, and expressing my worries about contravening my mom’s wishes in the event they wanted to do any kind of surgery on her hip.

In the end, the doctor was supportive of the idea that I drive directly down to Cairns Hospital and present myself to the doctors there and discuss with them the whole situation. So despite it being a 2 1/2 hour drive, I did that, and reached Cairns at around 2 PM – just in time to meet one of the residents at the “Transit Lounge” – an area for outpatient procedures at the Cairns Hospital, which is a behemoth of an institution, given it serves not just the City of Cairns (pop ~200,000) but the vast outlying regions of all of Far North Queensland (a region the size of Wyoming, with about the same population).

The doctor, and her supervising doctor, affirmed that they were declaring that the break in mom’s femur did NOT require surgery. “You’ve dodged an operation,” joked Dr Ahmed, with a smile. My mom became alarmed, because she’d forgotten there was an operation in need of dodging. So we calmed her down and said everything would be okay.

Then there was another bout of interminable waiting, while the powers-that-are turned the gears to get Ann transported back “up the hill” to Atherton Hospital. Ann several times forgot she was in Cairns, which probably is for the best, as she is opposed to the concept of Cairns as matter of deeply-held philosophical principle, and is unable to say the name of the city without venom. I’m not sure I understand the antipathy. She’s just not a city person, I think it what it comes down to.

So I waited with her, and made stupid jokes and observations, and let her look over my shoulder as I studied Duolingo’s Vietnamese, Korean, and Welsh on my phone. She mostly stayed in good spirits though she became quite angry when she announced she needed to pee, and the nurses all insisted that it was fine to pee into the “pad” (adult diaper). It’s undignified, I understand, but as a practical matter there is no way the thinly-stretched hospital staff can spend half an hour transporting a non-ambulatory patient to a restroom on demand. Ann was very grumpy about it. I tried to say she should look at it as a kind weird luxury – a “pampered” existence and all that. It’s a difficult thing. I remember similar struggles during my days in the ICU in 2013 in the wake of my tumor removal.

Once she was loaded into the ambulance, left too and drove back up the hill and to my mom’s house, just over 3 hours drive time on the twisty roads of the Kuranda road and the Tablelands. I got to the house at just after 9 pm. It had been very long day, mostly driving and waiting.

Today, being Sunday, there should be fewer obligations. I’ll go into Atherton and visit at the hospital, and hopefully meet up with a few of my mom’s long-suffering, supportive friends.

It was rainy and thunderstormy last night, but the dawn is cool and blue-skied, and wallabies are grazing around my mom’s driveway, and birds are making alarming jungle-noises in the trees.

It’s Saturday morning on the Atherton Tablelands, Far North Queensland. I need to provide an update.

After the long trip (40 hours travel time, Klawock to Atherton), I crashed last night around 8 pm (local time = 1 am Alaska time). I slept through to 2 am and woke up completely, but after killing some time reading I managed to sleep again from about 4 to 5. Now it’s 6 am and I’m going face this day. There was rain last night, and lightning in the clouds as I drove from Atherton up to Ravenshoe to my mom’s house.

Here’s a summary of the situation with my mom. She has the broken right shoulder, but they’ve also identified a possible bad break in her right femur. This is troubling mostly because if it’s serious and goes untreated, it could mean she really basically never regains mobility. They’re taking her down to Cairns today to do an MRI (no MRI at Atherton Hospital), and try to evaluate how bad it is and what if anything to do. If it’s severe, they want to press for surgery (inserting a pin), explaining that it is “palliative”. Although I understand, I also really want to respect my mom’s repeated and furious declarations of wishing for “NO interventions”. For my mom, even the MRI is really a step too far with respect to the boundaries she tried to set back when she was more coherent, and letting all this happen feels like a betrayal, but it’s very hard to resist the medical-industrial complex and their “of course it’s the right thing to do” approach to the medical ethics of any and all interventions.

At the same time, the threat of “never regaining mobility” is pretty scary – even Ann admitted that in talking last night. Mentally she’s more calm than I expect, but they’re giving her opiate painkillers and some kind of anti anxiety med (I think?). Anyway, I’d be calm too, probably. It’s clear, though, that her mental decline is real and substantial. She really reminded me of Arthur the way she was told repeatedly during the 2 hours I spent with her about the upcoming MRI appointment, only to deny having heard about it the next time it came up, and giving alarmed expressions.

She retains her sense of humor, and returns frequently to a notion of “giving” – though I can’t quite figure out what she means (giving what? to who?) but it feels like a kind of spiritual expression for her, and maybe groping through the fog for some idea of closure? I don’t quite know – her vocabulary is highly reduced and she has much difficulty expressing herself sometimes, though her level of understanding in any given moment is quite a bit higher than Arthur’s is.

Today, mom’s off to Cairns for this MRI thing, where my accompanying would be pretty pointless given the logtistics of it. So I’m going to focus on figuring out why my mobile phone roaming, which worked so well last time I was here, is absolutely failing me. I’m very upset about it but also absolutely clueless what I can do about it? How do I get customer service from AT&T while overseas when my phone isn’t working? I may end up buying a local pre-paid phone if I can, because this is not a situation where I want to be phoneless.

We finished the last of Arthur’s various appointments with specialists at the VA hospital in Portland, this morning. This last appointment was with audiology. They admitted that their past efforts had fallen a bit short – which was reassuring. Nevertheless, we have had to schedule a follow-up appointment for February, back here in Portland. So we’ll have to travel at that time.

The diagnosis is not far off from what I expected. He’s “profoundly deaf” in the right ear, and “severely impaired” in the left. I’d actually already concluded that he must be deafer in the right than the left, given occasional unintentional experiments. Interestingly, Arthur lucidly commented that it made sense – he observed that the right ear was often “closer to the helicopter” – as a pilot, I guess the volume from the engines was stronger on the right side?

I’m moderately hopeful (but not extremely hopeful) that they have understood some of the behavioral issues that prevent Arthur from successfully using fancy, smartphone-connected hearing aids, due to his challenges in taking on new (unfamiliar), “fiddly” interfaces, etc. He can’t even activate his smartphone successfully. Basically, any technology newer than what he was comfortable with circa 2018 is going to be completely unlearnable. I’ve seen this with his efforts with his computer, with his banking websites, etc. “Updates” that alter the user experience render the new version unusable for him.

So despite the suffering and inconvenience, we’ll be traveling back to Portland in February.

Meanwhile, he’s without hearing aids (the repair I attempted to the ones we wrecked in the washing mashine last week didn’t stick, and both hearing aids were entirely nonfunctional as of two days ago). They will attempt a “repair” of the broken ones, which they’ll mail to us, but I’m not very optimistic on that front.

We now look forward to a couple Thanksgiving feasts, and return travel to Southeast Alaska next Monday.

As a postscript… one small lesson: never report the loss of just one hearing aid to a healthcare provider; always report both lost, that way you’ll get a proper pair as a replacement, instead of a mis-matched singleton.

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.