CAVEAT DVMPTRVCK

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.