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QUARTERLY ESSAY 57 Dear Life

 

Correspondence

Inga Clendinnen

Dr Hitchcock has written a passionate essay urging more respect and more sensitive care for the aged, and for more money – much more money – to be spent on improving and prolonging their lives. She also believes that financial constrictions on medical services have led to the “rationing” of care, so permitting or even encouraging “premature” death. As an octogenarian historian I naturally checked the endnotes, and found that while there are references to medical journals, to (mainly American) opinion pieces and comments from anonymous doctors, her own long and highly relevant experience is her major source. After an intermittent career as a hospital inmate who now inhabits a high-care nursing home, I will therefore draw on my own experience to assess her findings.

First: are young people hostile to “the aged”? Any old person who dared the footpaths during the skateboarding craze or who tries to “share” walking tracks with cyclists now will say yes. When I began to fall over in the street, people over forty-five would run to pick me up, but the jeans just walked on by, and this despite their eerie devotion to antique rock stars. I’m not sure the aversion is new – I loved my grandfather for his bulk and his boots and his warm tobacco smell, but I hated both grandmothers for their skimpy hair, their moveable teeth, and their taste for grabbing me with their hard old hands and pulling me against their unbosoms. But there were fewer old people in those days, and those few kept off the streets. Is the American health system as merciless as Dr Hitchcock says? Yes, and it’s getting worse. (See Katie Brown, “In Race for Medicare Dollars, Nursing Home Care May Lag,” New York Times, 15 April 2015.) I disagree with some of her judgements. Ought a ninety-year-old be given a pacemaker to ease his last years? Yes – but only after deaf children needing updated hearing aids have been supplied with them, and equivalent needs of the young are met, which, of course, means No. Nor do I think we are “divided creatures” likely to ask for “the opposite of what we wish for.” When I say I want to die, I don’t want to be treated for depression.

I’m grateful for her insight into covert hospital “rationing” of expensive treatments for the old. My 1994 liver transplant described in Tiger’s Eye was a case of rational rationing, but later experiences begin to look sinister. After the transplant my immune system had to be suppressed, which meant I joined HIV and AIDS patients in being vulnerable to any number of strange diseases. At seventy-four I was drowning in one of these diseases, and listed for an immediate lung operation. Then I was “bumped” from the theatre list time and again – until an obscure string was tweaked, and the operation happened. Young road-accident victims can need lung operations. Had I been “rationed”? Four years later, hit by another mystery disease (Nocardia, if you want to check with Dr Google), I might have been rationed again. Nocardia is a grim disease: if the brain is implicated, as mine was, 80 per cent of patients die. A nonchalant neurologist also told my son that the few who survive the operation are usually blind. Meanwhile I had begun to hallucinate, which past experience has taught me to dread. I had also been fasted for thirty-six hours “in preparation” for yet another endlessly postponed operation. So I asked that treatment cease and that I be allowed to die. The neurologists immediately agreed. Then my old liver transplant physician intervened, asked for three weeks to fix me, I agreed, and fix me he did. The brain operation happened, I emerged sighted, and after three months in hospital and a final month in a place quaintly titled “Rehab”, I was discharged into a high-care nursing home because I would never be able to walk again. (I now walk. With a wobble.)

The most frightening “rationing” was applied to my husband. In very brief: he had had a series of tiny strokes. Then came a more severe one. I immediately called the kindly ambulance men who had been so kind when they’d come to pick him up when he’d fallen (“Don’t worry, love, it’s the main thing we do”). This time they came – and flatly refused to take him to hospital. I was incredulous; they were firm. So were the team I called the next day. Then it was the weekend, both sons were away, the “Doctor on Call” had no power to do anything, so I rang again. This time a (female) team came, looked – and whisked John off to the Austin Hospital’s emergency department, where I knew he would be in good hands. As he was: unconscious on arrival, after several months and a couple of hospitals he was sufficiently recovered to be discharged into a high-care nursing home. Had the ambos applied “rationing”? Now I think so.

Here begins my serious quarrel with Dr Hitchcock: her characterisation of present-day nursing homes. Although, as she tells us, 25 per cent of people over eighty-five now live in nursing homes and that 30 per cent of Australians will die in one, she suggests that to be condemned to a home is a fate rather worse than death. She begins by listing “all the small indignities” suffered by her own great-aunt: toenails so long left uncut they’d curled and cut flesh, “faeces on her dressing gown, grime in the creases of her skin.” Surely these were not “small indignities,” but evidence of criminal neglect? Why didn’t her mother, who reported all this, raise Cain? There were regulations enough even then. Now there are more – but families have to stand ready to intervene.

Then come graphic descriptions of bedsores inflicted in nursing homes. I’ve had two lots of bedsores, both inflicted in hospitals, both cured in nursing homes. We are also informed that nursing-home inmates are allowed outside “for an average of ninety-six seconds a day.” Where can these extraordinary figures come from? She further claims that bothersome dementia patients are drugged to quietness. Most seriously, she claims that nursing homes typically fail to meet their patients’ human needs.

I’ve come to have a fairly wide experience of nursing homes. Several of my friends and kin, most of them women and all in their right minds, have vanished into them. Two died soon after admission, which is no criticism of the homes. They would have chosen suicide had it been an option. They were used to having a large effect on the world, and a shrunken existence pottering “at home” or in “A Home” was no alternative. Others still mourn the loss of their old role as nucleus of “the family,” now divided into several families. And one, only levered into a home after a long, ruthless battle with her kin (funny in retrospect, hell at the time), quickly carved a new family out of her marvellously various array of carers, and thereafter lived, and died, happy.

Direct experience began when my husband, who was losing mobility, stayed in two low-care homes for “respite care” when I had to go briefly into hospital. They were adequate in care, but rather too conscientiously genteel, with less sightly inmates tucked away in their neat little rooms. As John approached discharge after the stroke I looked again, this time for high-care homes, first in Kew, our home suburb, and then further afield. Some were stately, and averse to commoners. More were multi-storied with lots of glittering metal and glass, astonishing erections of artificial flowers, and not a patient in sight. Except for one: a grumpy old lady I first saw furiously pounding the (gleaming) lift buttons, and later found down in the street, furiously smoking.

I decided I wanted a place with fifty or fewer residents, with both residents and carers visible, and, if possible, a few fresh flowers. I found it behind the second-last name on my long list. This place has forty-four patients distributed between two floors, each its own small world; it is open-plan but with quiet corners; there are courtyards where even the bed-bound are wheeled to enjoy the air. John arrived tired and for a time confused as to where he was, but he was interested in the lifting equipment, accepting it readily, and he especially enjoyed being tended by his carers, most of them young, between twenty-five and thirty, most of them (75 per cent) born elsewhere – in Nepal, India, Africa, Sri Lanka – and every one of them good-looking. Being strong-willed, deaf and helpless, he could sometimes be cantankerous, but they had their strategies. One example only: when he’d refuse to take essential medications, one special girl would gently hold his earlobes, and (gazing anxiously) kiss his forehead until he had to laugh, and swallow. The men treated him with marked respect, because he was old, and male, and learned; the girls said they liked his smile. I believe he was much happier in the Home than he could have been in our old home, which, with both of us gone, had vanished anyway.

John died in August of 2012, a few days before his ninetieth birthday. It was a slow, gentle relinquishment, achieved over three days and nights. Throughout he was beautifully tended and his family had full access, with the staff providing coffee, meals and an overnight bed, along with explanations and reassurance. Dr Hitchcock offers a single example of a good death with both family and patient cared for achieved inside a hospital, but this was an improvised affair put together by three determined nurses encouraged by her own vigorous approval. Not long ago three women in my corridor died within a few days of each other, every one of them gently, with their families around them. It is standard practice here.

I have come to be content, too. The once-daunting semicircle of greyheads in front of the big television has turned into individuals, who watch, comment on and occasionally waylay someone from the human traffic (kitchen staff, handymen, visitors, carers, the occasional doctor) flowing past. We go by first names (easier to remember), although a few people choose to be addressed more formally. The carers are good company, and instructive, too. One woman from Liberia tells me that in the desperate state of her country now, “old people” are no longer cared for by their impoverished families. Not that many people live to be old. Generations are brief in Liberia. She also says she has never come across a case of dementia there, but that certain families are known to have “bad blood” which can lead to strange behaviour. They are therefore shunned as marriage partners.

As for training: a couple of the carers are qualified nurses from overseas waiting accreditation. Others are pursuing nursing degrees part-time. Several chose aged care rather than the noisy alternative of “hospitality”; others find the flexible shifts work well while they raise their families. As for Dr Hitchcock’s claimed shortage of labour: there are more applicants than jobs, and those selected must serve a six-month probation.

Workers at every level seem committed to this taxing work, which can only end in tears. For some it approaches a calling: the present director began work in aged care at seventeen, while the alarmingly inventive “Life-Style” leader followed her mother and grandmother into the profession. I think the essence of the place resides in a handful of nurses, whose calm, humour, patience and compassion seem inexhaustible.

Dr Hitchcock tells us that dementia patients deteriorate when deprived of familiar faces, “stimulation and meaningful work,” and that homes routinely drug them to quietness. “M.” lives on my corridor, and she has dementia. She is also tall, strong and terrifyingly mobile. She is always on the move even late into the night, sliding through doors, “tidying” the linen cupboard (she used to be a nurse) and invading other people’s rooms. Especially mine. They put a chain across my door to keep her out: she neatly ducks under it, and “tidies.” At first I was afraid of her (in a bad phase she’d pulled me out of bed). Now I like her, because I can see the independent, efficient woman she once was, and because now she sometimes gives me a small, wintry smile. The staff assure me she has never been drugged into passivity.

As for toenails: I know when mine are going to be cut. On an ordinary morning there is a tap on the door, a tall young man glides in, delicately excavates my feet from the blankets, clips my nails, buffs them, wiggles each toe and glides out again: a mildly surreal experience, but a pleasant one.

This place is good, but it is not unique. Carers who work or have worked elsewhere say there are other good places, most but not all of them smallish, most of them further out and less expensive. But it is necessary to search. Our carers work in pairs, they trust each other, and they know that in a crisis, support will be expert and immediate. And then, after their eight-hour shift, they go home. To struggle to care for a dependent old person by yourself is, in my view, a cruelty. Widows, wives and unmarried daughters used to be forced into such work by that most implacable coercion, social expectation. Women will not submit to that servitude again. We are going to need more (simple) nursing homes, and more recognition for their workers. They will also need to be subsidised, because reliably good care for the aged is expensive. And the families must not be made to suffer guilt.

 

Inga Clendinnen’s Quarterly Essay, The History Question: Who Owns the Past?, appeared in 2006. Her ABC Boyer Lectures, True Stories, were published in 2000, as was her award-winning memoir, Tiger’s Eye. In 2003 Dancing with Strangers attracted wide critical acclaim. Her most recent book is The Cost of Courage in Aztec Society.

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This correspondence discusses Quarterly Essay 57, Dear Life. To read the full essay, subscribe or buy the book.

This correspondence featured in Quarterly Essay 58, Blood Year.


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