Opinion

All Hands on Deck

An immigrant son gets an SOS from far away, where age is hurling loved ones onto the rocks.

By Ian Gill 16 Dec 2015 | TheTyee.ca

Ian Gill's Tyee column, The Poor Mouth, appears every two weeks or so. Gill lives and writes in Vancouver and works on social innovation initiatives. Find his previous pieces in The Tyee here, and find him on Twitter @gillwave.

I boarded HMAS Roden Cutler on a typically ruffled springtime day after a flight from Vancouver to Sydney. The Australian navy actually counts no such ship as the Roden Cutler in its fleet, but in my month of active duty at an Anglican retirement village that bears Sir Arthur Roden Cutler's name, I couldn't shake the feeling that the place was a large vessel that had run aground on Sydney's north shore.

Life's last cruise. Destination: oblivion. Passengers marooned in a kind of twilight zone, one part Night of the Living Dead, one part One Flew Over the Cuckoo's Nest. How can it be that so many lives, lived in full, empty out into places like this?

How is it that my uncle, Ross Andrew Fergusson -- veteran of the actual HMAS Waterhen (sunk off Tobruk, Libya in 1941), and of the HMAS Norman (Battle of Okinawa) -- ends up beached in a suburb of Sydney, with nothing left to do but die? "The story of aging is the story of our parts," writes Atul Gawande in Being Mortal. "We wear down until we can't wear down anymore."

I got word this past Canadian summer that Uncle Ross had taken a fall, and that one of his parts, his wrist, was broken. In that slippery slope sort of way, it did not sound good.

Count me, then, as one among thousands of Canadian immigrants whose hearts inhabit two places, because we remain tied to the unspooling lives and unscheduled demises of loved ones a continent or perhaps a hemisphere away. We email, we Facebook, we Skype, we wait to be summoned, inevitably, on some heartrending errand. If it's the holidays (as it too often seems to be) the journey seems even longer. Still, we heed the call. We go, as, eight years ago, I went for my father. And we go again.

I learned about Uncle Ross's fall from my mother, Jane, who adores her older brother. She called me via Skype in an agitated and confused state. Agitated, because she yearned to rush to Ross's aid, but she lives 1,400 kilometres away, in Adelaide, and anyway suffers from aphasia, and cannot travel on her own. Her ailment is a form of brain damage that causes speaking difficulties, but it doesn't affect intelligence, so unlike someone with full-blown dementia, she was able to understand that Ross was in trouble. She was thus completely capable of worry, but utterly powerless to act, which amounted to not just two afflictions, but the square of them both.

From a couple of garbled bits of information from my mother, and with the help of Google maps, I soon deduced where Ross was. I called a hospital in north Sydney and magically he was almost instantly on the line, chipper as ever, delighted to hear my voice all the way from Canada. (Even as an electrical engineer who once worked for the "telegraph," I don't think he's ever lost his boyish incredulity that over oceans that once took him perilous weeks to cross by ship, voices can travel, without echo, in a mere instant.) Still, as ever, the old bloke brushed off my concerns, gently chiding me for going to the expense of a long-distance call in order to make a fuss about his health. Uncle Ross is 96 years old. He'd been out running errands -- still driving, in Sydney, at 96! -- and he'd tripped over. Nothing to get worked up about. He was looking forward to going home.

I later learned he'd been transferred from the hospital to Roden Cutler Lodge, a "permanent care" facility in the suburb of Gordon, where his wife Joan, 90, has been interned for four or five years now. Ross and Joan got married in middle age, have no children, and live, or lived, in a house Uncle Ross built himself half a century ago. When Aunty Joan became ill and needed round-the-clock care at Roden Cutler, Uncle Ross fixed for himself at the house, and, to his daily routine, he added a five-kilometre drive to the lodge, often doing errands for Aunty Joan; he brought her the mail, and sometimes he fetched small servings of ham off the bone from the butcher shop as a foil against the lodge's sub-standard fare. Last year when I was visiting, he drove me down to see Joan one afternoon. When we were leaving, they paused in a hallway, kissed on the lips, stroked each other's hair, and whispered, "I love you." This, I gather, they did every day, which is a pretty good thing to add to your routine if you can get it.

And then came the fall. It wasn't a particularly serious injury, but you know how it is with old people. They keel over, and even a simple fracture is compounded by a downward spiral in overall health.

In my uncle's case, he developed pneumonia, which put an end to his doctor's efforts to figure out a home-care plan for him so he could re-establish his routines. I was able to keep track of all this because a retired doctor, Jim Pollitt, has a soft spot for Ross and Joan, so he dropped by often (even thinking to bring Joan some ham from time to time). The administrators at Roden Cutler put me in touch with him, and Jim became my single, reliable thread to the goings on in Gordon. He even picked me up at the train station the day I arrived from Canada this past September, and took the time to take Ross and me up to the house, where Ross pottered around for a bit.

Ross was particularly proud of his ground-floor workshop, where several projects had been underway for a number of years. He'd made a sliding wooden door, for instance, but being 96 and slight of build, he'd discovered that the door was too heavy for him to hang single-handed. Of course, being a Fergusson, it would never have occurred to him to ask for help.

Now he is surrounded by it. Help, that is. Absolutely drowning in the stuff, actually.

'Poor old buggers'

"This is an awful place," Ross told me more than once in the month that I was in and out of the facility. "I'm a bit of a loner," he said another time, gesturing towards a group of old-timers unsteadily making their way to some infantile group activity that Uncle Ross disdained. "Look at those poor old buggers," he said, shaking his head. Stubborn, independent, frugal -- a kind, inventive and loving man who fought for his country, worked industriously for decades, tinkered in his workshop (he has enough old radios and stereos to open a hipster appliance store), painted portraits and landscapes, played classical music on a baby grand piano, and remained cheerfully curious about what he often described to me with a shake of the head as this "funny old world" we all live in.

Yet there he is now, hunched in a corner by himself, dodging the rush hour traffic of walkers and wheelchairs bound for the dining room, determined not to submit to the lodge's norms, but trapped by them nonetheless, all his personal agency now overtaken by the routines and rituals of institutionalized "care." And without family close by, what other choice is there, especially since he's not just physically weak, but cognitively challenged as well? Lucid one moment, addled the next.

"You're living upstairs are you?" he asks. No, I say, just visiting from Canada. "Ah, Canada. We could fix the deck (on his house), don't you reckon?" Sure thing, I reply. "You know they take things here," he says in a conspiratorial whisper. "I lost my watch. Someone took it. Can't trust anyone here." The next day I fetch two watches from his bedside table back at the house, and bring them down to the lodge. He's happy about that, accusations of larceny now forgotten, although he remains suspicious, watchful, resentful, and sufficiently compos mentis to abhor what seems, with rude speed, to have become his last lot in life.

He wants out, but the doctors say dementia is definitely setting in, which not only condemns him to staying where he is, but puts him in the grim company of 47 million other people with dementia around the world, according to a recent report in the Globe and Mail. Forty-seven million people, my uncle and my mother among them, living longer than ever, dying more slowly, and almost all of them dying not in their homes, but in "homes" like Roden Cutler. Drowning on dry land.

From the outside, Roden Cutler Lodge is a rather grand looking place, all colonnades and colonial splendour, with sun decks and a swimming pool, gorgeous gardens, raucous birdlife -- just the place you'd be likely to sign up for on TripAdvisor if it was a resort, especially since the photo gallery on the web omits the rather utilitarian additions that enable the facility to house more than 150 people ranging from low to high to palliative care.

Inside is where the analogue to a ship begins to hold water: railings, everywhere railings; colour coded floors; common rooms for activities; a library; a chapel; games rooms; notice boards offering field trips; a hairdressing salon and manicurist; and copies of a newsletter outside every cabin door, this month's edition rather ominously stating that "We're all in it together!" You got that, Uncle Ross? From the room next door to Ross, a constant loud swell of synthesized classical music; across the way, a geezer with his door always open and a radio barking the call of races across the gambling-mad country, nags and dogs; in the hallways, almost always someone, skin the colour of bruised aubergine, steering a walker around carts from which cheerful attendants dispense pills and meals, pills and meals, pills and meals. The odour is faintly urinal, the heat is on too high, the lights are too bright.

And yet, here's a surprise -- the people who run the joint, and who work there, are terrific. There seems to be none of the predatory, money-grubbing, short-cutting, disposable human stuff that one infers from the stock image of an old folks home. Yes, it's institutional, but gentle, in an unexpected way. It's no one's fault that these old, tired souls dress strangely, don't quite get all their food in their mouths, dribble and droop, shuffle and stoop, don't remember anyone's name (including their own, in many cases), and have less than perfect command over the few functions left to them. Among the staff, I witnessed nothing but cheerful solicitude, the sort of duty of care that one expects of the nursing profession, but seems odd to actually discover in real life.

Yet no matter how buoyantly they go about their work, the staff still march to routines that favour safety, efficiency and conformity, a "continuum of care" framework in which "medical professionals concentrate on repair of health, not sustenance of the soul," as Gawande writes. "For more than half a century now, we have treated the trials of sickness, aging and mortality as medical concerns. It's been an experiment in social engineering" which Gawande says has failed. "We seek a life of worth and purpose, and yet (in nursing homes) are routinely denied the conditions that make it possible." Certainly, consigned to his small room in steerage class, no one sees Uncle Ross as having a purpose; he is a patient, not a citizen. If this is a "village," as advertised, it is a village of the damned.

Under the radar

On his wall Uncle Ross has a photo of his house, the only decoration in his spartan room. "That's a pretty good place, isn't it?" he says, gesturing towards the picture. He is most animated when he talks about going home. He is proud of what he built there. Here, he has nothing but a few clothes, a pile of unread papers, plastic cups, his watches locked away in a drawer. He sleeps, mostly, unperturbed by the comings and goings of medical and cleaning staff, making it to meals some of the time, hiding out when he can. He's been doing that for a while, it turns out. Before the fall, up at the house, he refused the offer of prepared meals from the Department of Veterans' Affairs. Goodness knows what he actually ate, or how often, but he was making do. He mostly eluded social workers, too. Aunty Joan paid the bills when Ross took them down to the lodge. He seemed to fly under everyone's radar. The deck had rotted off the front of the house, so he'd boarded it up and put a sign up saying "Danger." He made do.

Ross kept the rest of the house ship shape, as you'd expect of an old tar, although his filing system was somewhat quixotic. He filed every piece of paper that came through the mailbox, including even shopping flyers, all meticulously dated and clipped together. He kept notes from Aunty Joan, written in a girlish cursive on lined paper torn from a small pad: "Ross, Please put in medicine cabinet. Joan." "Ross, Don't forget to bring some ham. Joan." Stacks and stacks of documents hoarded according to no discernible pattern.

But because the bills got paid on time and Ross made so few demands on the system, and exhibited no obvious signs of distress, he went pretty much undocumented. He and Joan had made wills, although they could find only one copy of his will, couldn't find hers anywhere, and couldn't find the solicitor who had prepared them. Neither had assigned powers of attorney, nor of guardianship. When he was hospitalized, then dispatched to Roden Cutler, the costs of Ross's care at first were covered by Veterans' Affairs, but the lodge administration had no way to sign him up for permanent care, and had no authority to access his bank account to pay for it. My first week there, at a glacial pace set by Ross and Joan, I began the painstaking business of putting their affairs in order: solicitors, accountants, lodge administrators, realtors (to assess the value of their house), banks, and so on. There was no one else to do it, and I recall Ross joking to me last year that since he had never died before, he wasn't sure how to go about it. Slowly, seems to be the answer.

Camping out with mum

After that first week, I headed west to Adelaide, my daughter Lucy in tow. In Canada, I had laid plans for a trip with my mother, an outback adventure to commemorate the many camping trips she'd taken my sister and me on as kids. At first it was going to be just the two of us, but in the planning stages it ballooned into a caravanserai of two well-equipped four-wheel-drives, each commanded by my nephews, the group now six strong with the addition of Lucy and my sister Heather. My mother is 81, and in addition to dementia, is physically diminished, a mere stick of a thing these days. Still, she's a Fergusson, mulishly unwilling to admit to any frailties, and before we headed out she made it very clear she was determined to sleep rough, so she could see the stars at night. She couldn't retrieve the word "tent," but joined her hands in a peak, and shook her head no. I assured her there would be no tent.

We drove north under clear skies on a Monday morning that turned quickly hot, and more than 500 kilometres later we bivouacked on a desert plain just to the west of the Flinders Ranges. Back when we were kids, we travelled to the Flinders, and beyond, in cars and station wagons that were totally unsuited to the terrain; we didn't have much money, so there were no tents, just foamies on the ground, cheap sleeping bags, a big roll of plastic to stretch over us if it rained, our camp open to elements that included snakes, spiders, lizards, flies, ants, whatever. This time out, my nephews, Giles and Drew, had every imaginable bit of gear, including "swags," which are a sort of low-slung sleeping bag-cum-tent that you roll out, erect, climb into, and zip yourself inside like a kind of canvas sarcophagus. Mum slept on top of hers rather than inside it, happy under the stars for at least one night, before the cold drove her indoors.

On the second night we camped at Chambers Gorge, a long, dusty cleave in the earth that we often visited back when. There is a photograph, infamous in our family, from one of our camping trips dating back more than 40 years; we think it might have been taken in Chambers Gorge. Anyway, it's black and white, and shows Heather and I looking up adoringly at our mother, who is seated, with Philip Roth's Portnoy's Complaint propped open on her knee, her mouth pursed in the act of reading it aloud to us. Judging from her place in the book, I think she's reading Chapter 2, "Whacking Off." You know, that stuff about liver and milk bottles and other objects of teen lust that might have made an impression on a mind barely two digits old. Let's just say that ours was not the most conventional of upbringings; let's just say ours was not the most conventional of mothers. For our sequel a few weeks ago, I took along a fresh copy of Portnoy's Complaint and we re-posed the photo, although this time mum could barely hold up the book and only pretended to be reading because she can't anymore. Lucy took the photos, and the last I saw of the book it had disappeared into her backpack, apparently essential reading for a 16-year-old even in this day and age. Don't tell her mother.

582px version of MumPortnoysComplaint_610px.jpg
Mum reading 'Portnoy's Complaint' to her rapt children. 'Let just say ours was not the most conventional of upbringings.'

My mother, when not sleeping under the stars in the outback, lives independently in a small, semi-detached unit in the Adelaide Hills. "Independently," inasmuch as there is no nursing staff doing the rounds, although a couple of social workers look in on her each week, as does Heather, whose attentions my mother mostly resents. Twice a week, Yo-Yo, as I sometimes call her (as in Ma), plays pétanque, which for her involves as much hugging of old men as it does actual bowling; she gardens like a woman possessed, not just in her garden but her neighbours'; she walks to the shops, having lost her driver's licence (thank goodness). Sometimes she forgets her groceries on the footpath, but in her village the old girl's idiosyncratic behaviour is tolerated; someone eventually materializes, drops off her shopping, and gets a hug for their troubles. She has a small, nervous dog, a King Charles/poodle cross, that she almost can't bear to be separated from. Her most recent partner, George, lives a few units away and they visit most days. She has friends. She has a life.

Yet for all her protestations of self-reliance, it is hard not to be worried about the growing distance between her desperate need for stimulation, for affection, for adventure, and for independence, and her diminishing ability to pull it all off. A couple of years ago she suddenly took herself off to Lombok, in Indonesia, a trip that required a stopover in Bali. Relying on connections from family and friends, she got there, miraculously, but upon arrival, after checking in to her cabin and with it being tropically dark by 6 p.m., she got lost looking for the restaurant, and stepped off a wooden walkway into a deep pond, fully clothed. Someone heard her go in and fished her out. Later she showed me photos of her dancing with some slim-waisted Indonesian man, aged maybe 20, and of her flirting with him at the bar. She had no business being in Lombok in her late 70s, but there she was, in a defiant reversal of Stevie Smith's famous poem "Not Drowning, but Waving."

More recently, she was out walking her dog, Annie, on a foul, wet night in the hills, and she fell. She lay there on her back for some time because Annie, being protective of her, sat on her chest. Annie wouldn't get off and mum couldn't get up, although she eventually rolled over and limped home in the gloom. She joked about it later on Skype, just as another time she airily dismissed a big bruise on her forehead, mark of another fall. Last year when I was in Australia, I took her from Adelaide to see Ross. After our flight, when we boarded a local train, I could smell vinegar. It turns out she had taken to sipping vinegar each night for some curative effect which she couldn't explain, and had packed a bottle in her luggage that hadn't sealed properly. Her clothes were soaked in it, and it took some convincing before she agreed to launder her smalls. It did give rise to a bit of black humour between Heather and me -- when mum is on the loose, our text message shorthand for her these days is OVP, old vinegar pants.

On another occasion last year, OVP up and took herself to Sydney to "help" Uncle Ross, but this trip didn't go well. Heather got her to Adelaide airport and when mum landed in Sydney she somehow found her way to the right railway station, where Ross met her with his car. A couple of days later, however, Heather got a call from a nice man, Mike, who asked if she was any relation to Jane Fergusson, who was sitting in his car. Turns out she'd gone walkabout, was completely lost. Mike had found her standing on a road a long way from my uncle's house, and dug out of her purse a list of contacts Heather had put in there. When he heard that Heather was hours, not minutes away, he drove mum back to Ross's house. When she told me about this on Skype, she shrugged it off as a bit of a lark, a good way to meet interesting people. But later, even she admitted that maybe she shouldn't travel alone any more.

Yet that was a rare concession. A constant undercurrent in interactions with my mother is her abject fear that my sister and me are going to dump her into an old folk's home, a "home for the bewildered" as she calls it. So she lies about her abilities, for instance insisting that she eats well and often, even as she atrophies before our very eyes. She underplays her ailments, even though she almost can't use her hands any more, which shake uncontrollably when she tries to hold cutlery, or open a jar. She can barely sign her name now, and it was only angrily that she agreed to allow Heather to be a signatory on her bank account, and now worries we are conspiring to clean her out. She needs the money, of course, to pay for a trip to Belgium, because she has heard that assisted suicide is decriminalized there (in Australia, it is not).

'Don't you dare'

On my mother's kitchen table I spy a computer printout referencing Philip Nitschke, the South Australian humanist who founded the pro-euthanasia group Exit International. Just weeks ago, the Medical Board of Australia imposed such strict restrictions on Nitschke's medical registration that he's been effectively banned from promoting voluntary euthanasia, and he has been specifically banned from providing advice or information about the drug Nembutal, a sedative that proves fatal at high doses. Nembutal is illegal to import into Australia, although that hasn't stopped my mother from demanding that I find a source of it for her, which I have failed to do. Now she wants me to take her to Belgium, which I promise I will do, but first I take her back to Sydney to see Ross, in all his bewilderment.

It's a tricky visit, because I know it is going to be emotionally wrenching for her to see him in distress, but I fear he may not be long for it, so it seems any visit is better than none. One twist in the family tale is that my mother and Joan cannot abide each other, never have, and neither has ever made a secret of her loathing for the other. So it takes some navigating to get mum and Ross together, and keep mum and Joan apart. It mostly works out. Mum's and Ross's reunion is poignant, and painful. She fusses and wants to fix things, but there's really nothing she can do. He is thrilled to see her, but is a bit confused about why she's here.

We visit for a few hours each day for three days, and on the last day, a Friday, a weird tussle takes place in the hallway en route to the dining room. Mum totally flummoxes Ross when, halfway to the dining room, she steers him over to a side room because she's spotted Joan guiding her walker towards lunch, too. Joan grazes Ross as she passes us, squeezes his elbow, I notice, and marches ahead without looking at mum. Mum and I are just wanting to say goodbye to Ross, as we are headed for the airport. But in Joan's wake, he takes off again with his walker, making a dogged beeline for the dining room. Mum tries to stop him, to give him a final hug and kiss goodbye, but instead almost knocks him over as she clutches at him, wrestling with his walker to get her hands on him, but he pushes forward, and then he's gone. She is bereft. In the car a few minutes later, she does something my mother rarely does. She cries. "It's so unfair," she manages to say. "Awful, awful." And then, "Fuck, fuck, fuck!" And then, looking straight at me, "Don't you dare!"

At the airport, I buy her a glass of wine and, while I'm waiting to put her on her plane to Adelaide, not Brussels, I Google "Belgium euthanasia" and I start to tell her what pops up. "I don't want to die yet!" she says. When? I ask. "Well, maybe when my, you know ..." and she does a hugging gesture. Your dog? "Yes, Annie!" You want to wait till your dog dies? "Yes. Then, take me to Belgium." She boards the plane to Adelaide. When Heather meets her there, she comes off the flight with her arm around some non-plussed young South Asian man who is relieved to hand her off to Heather.

Back in Sydney, I depart the following morning for Canada, but not without going to see Ross and Joan in the morning for one last time. There still are lots of administrative loose ends, but I promise Aunty Joan I'll continue to do what I can from a distance. Uncle Ross, meantime, doesn't quite catch on at first to the fact that I'm leaving. "Canada?" he asks. "I thought you were living upstairs." No, I say, gotta get back to work. "You look great!" he says. "Canada!" Yes, it'll be getting cold there now, I say. I'm going to miss you. Dr. Pollitt says he'll be around again soon. He'll take you up to the house. "Well," he says, sizing me up, "Canada! That's good. You look like a man for the planet!"

What a guy, what a gorgeous, sweet old guy. I subsequently hear from Dr. Pollitt that he and Joan are doing okay. He's taken Joan back to the house and she was relieved to see it was neat and tidy. "Ross has also had a visit, but it made him think more that he and Joan could live there again, which I'm pretty sure they couldn't without a lot of support." Instead, Ross is back at the lodge as I write this, 19 hours ahead of me, wishing he was someplace else -- in his workshop, no doubt, listening to the wireless -- but instead we've contrived somehow to deny a "fading man's need for everyday comforts, for companionship, for help achieving his modest aims." So he lies there on his final bunk, awaiting his last orders, to disembark. My mother is right. It's not fair.

Still, he at least has Joan. Among his papers, among the shopping flyers and 15-year-old phone bills and yellowing receipts from the hardware store, among the little scribbled notes from Aunty Joan that comprised a map of their domestic comfort and banality, I discovered a longer note from a few months ago, written when he was still making a go of it at home.

Happy Birthday
darling Ross

I have keys of car
and keys of house. Let me
have spare keys
Dont forget to wear your
neck alarm

I hope to see you when
Jim is able to take me.

Be happy & make it worth
while

I love you
Joan

I can't imagine he ever wore the neck alarm. But if ever there was a life that was worth its very long while, it was his. "Be happy & make it worth while," Aunty Joan wrote. He's done his part, so why is it so hard for us to do ours? Meantime, my mother Skypes from Adelaide. How are you? I ask. "Well, a bit weird," she says. Then she reaches down, sits back up, and there's Annie wiggling around on her lap. For now, at least, the dog seems to be doing okay.  [Tyee]

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