The 2017 Horne Prize was awarded to this searching piece on caring for a father with dementia. By Kerryn Goldsworthy.
Horne Prize: The Limit of the World
“Here’s what I want to know,” he says. “How did my mother and father get together?”
He used to know this story. But I can tell him again, and I am about to begin when the nurse on the afternoon shift comes in to wash his feet, dress his sore toe, rub moisturiser into his feet and calves and shins, replace and pull up his compression socks. His response to her careful attention is to decide that she is his girlfriend. She is a tough country girl and she deals with this adroitly. After all, she used to work in the high-security ward downstairs, which is where they take the residents who have strayed over some threshold that my father has not yet crossed. Not quite.
So she has encountered worse than this. Unlike some of the residents here, my father is up and dressed. He can still walk fairly well, if he has his special walking stick and is wearing his special shoes. He still greets me by my childhood nickname when I arrive to visit him. He can still make jokes. At his best, his vocabulary is as large as it has ever been, and his wit as quick. He can remember being an 18-year-old sailor lined up on the deck of HMAS Moresby in Timor’s Koepang Harbour on September 11, 1945, watching a Japanese officer sign a formal surrender in one of the several smaller ceremonies in the Pacific after the main event in Tokyo Bay.
But he can’t remember that lunch here is served at noon, in the dining room, every day. He sometimes thinks that his parents and my mother are all still alive. He sometimes thinks that his car is parked in the street, waiting for him to drive it away. He sometimes thinks that he owns two farmhouses and hundreds of acres of land. He sometimes thinks that he is going home to the farm.
We left the farm in 1966, and the last of the land was sold in 1980.
“Well,” I say, when the nurse has gone, “do you still want to hear the story of how your parents met? Remember how Papa was in France in the trenches, and his feet got infected?”
“Of course I remember,” he says crossly. “I’ve got a good memory.”
“So they sent him to the army hospital back in England,” I say. “And Grandma’s sister Jessie was down from Scotland, nursing in the hospital, and that’s where Papa met Jessie. And they wrote to each other after he went back to France, and then they got engaged. And then the Spanish flu swept round the world and Jessie caught it, and she died. So Grandma wrote to Papa from Scotland to tell him, and Papa wrote back, and she wrote back to him, and they ended up getting engaged, and she came out to New Zealand where Auntie Edith had immigrated, and they were married there and then Papa brought her to Australia and the farm.”
This tragic, ordinary, three-way romance, a tale of the Great War in the great world, is the stuff of which Australian society continued to be made in the decades after Federation, coming together like something being stirred in a saucepan. It produced people such as my father, who would fight under the Australian flag in the next war, but in whom the ancestry of older nations is still visible: he is not only half Scottish from his mother’s side but also a quarter Irish from his father’s, and a lot of what the clinical staff here tactfully call “the behaviours” is actually just the same way he’s been all his life.
“And then you were born,” I say. “In 1927.”
“So how old am I?”
“You’re 90, Pa.”
Dementia comes in several varieties. The most common is Alzheimer’s disease; my father has the second most common form, vascular dementia, caused by one or more transient ischaemic attacks or TIAs, otherwise known as mini strokes. These are often hardly noticeable while they’re happening, but they are visible in their effects, afterwards, by people close to the sufferer. Vascular dementia is a degenerative condition in which the blood supply to the brain has been compromised. It is not reversible.
Late in 2015, the gerontologist who ordered the MRI for my father and confirmed the diagnosis – indeed, we could see the white matter for ourselves on the scan – described the progression of the disease as being like a staircase: “stepwise deterioration”. The patient travels along levelly for a while, apparently becoming no worse, and then there’s a sharp bump and a visible downturn. And then it levels out again for a while, until the next bump. Over the course of 2016, my sisters and I got very good at spotting the point at which my father had fallen down another step.
We knew that as the condition progressed, its symptoms would probably include what the medical profession calls “wandering”, when the patient quietly pads off on some unknowable errand and goes missing. The term is misleading, for someone with dementia who has walked away is almost always on a mission, though she or he may not be able to remember what it is. Wandering, wondering. Other probable manifestations apart from this, depending on the stage the disease has reached, include incontinence, sexually inappropriate language and behaviour, and aggression sometimes escalating to physical violence.
This was my younger sister’s List of Four. She was a nurse for most of her working life and she said that once any of those four things set in, we would no longer be able to keep my father safe and healthy and harmless in his own house, and we would have to find a permanent aged-care place for him. Doing this is even more difficult than it sounds; not only is it fraught with problems in practical terms but it is also harder on the soul. The historian Inga Clendinnen once wrote about what it was like to have a liver disease that she knew would kill her and to be on the waiting list for a transplant. This, she said, meant accepting that what you were really doing was hoping that someone else would die. Finding an aged-care bed is much the same.
The received wisdom about dementia, in any of its forms, is that one should try to keep patients in the familiar environment of their own homes for as long as possible, but to watch for the moment when they become physically unsafe. Dementia patients become confused about objects. One of the first signs that something was up with my father beyond the usual deafness and vagueness of an 87-year-old came on the day in 2014 when one of us noticed he was trying to turn on the TV with the remote control for the heating. Once we’d noticed that, we were not surprised to see him a couple of days later trying to turn on the heating with his mobile phone. Dementia patients can put electric kettles on the stovetop to boil, or metal saucepans in the microwave. They can forget how the shower works, and scald themselves. They can cut themselves, burn themselves, or blow themselves up. They can take overdoses of drugs because they have no memory of having already taken their medication four hours ago. Or four minutes.
We kept my father living “independently” in his own house in the retirement village for just over a year beyond the diagnosis. Hospital nursing is very hard on the body and my younger sister had been forced to retire early, so between her training and the fact that she was no longer working, she was doing the heavy lifting with my father. Shopping, cooking, cleaning, laundry. Bills and other correspondence. Banking. Cat care. Taking him for haircuts and medical appointments. Protecting him from scams and ripoffs that arrived by mail. Researching aged-care facilities and putting his name on their lists, in the same way people register their newborn babes with desirable schools.
Meals on Wheels was an option for a while, and he was familiar with that because he once used to work for them as a volunteer, but he didn’t like the routine of a hot main meal in the middle of the day. There are support services available for things such as cleaning, but he would make a huge fuss about having strangers in the house. Two and then three days a week, all through 2016, I cooked dinner for him and my sisters, often making enough food for seven or eight meals so that there would be leftovers to freeze for another night or to give him for lunch the next day, sometimes adding dessert or cake.
On those three dinner nights, taking rostered turns with my sisters as per the colour-coded whiteboard on the wall, I would stay to wash the dishes, supervise his bedtime routine (dentures, medications, hot-water bottle, cat care), and sit with him until he was ready for bed. I spent much of 2016 watching appalling commercial television with him, and seeing the way that, as the year wore on, he wasn’t always following the narratives, sometimes didn’t realise a show had finished, and often thought the ads were part of the story. I was at once desperately bored and deeply apprehensive.
Here are some numbers provided by Carers Australia and Alzheimer’s Australia. As at February 2017, there were more than 413,000 Australians suffering from dementia. By 2025 this number is expected to increase to well over half a million. In 2015, there were more than two-and-a-half million unpaid carers in Australia, and the weekly median income of primary carers was 42 per cent lower than that of non-carers. The average age of a primary carer is 55. More than two-thirds of primary carers are female.
Because this is Australia, where by comparison with most other countries we are very lucky in these matters, government support of various kinds exists at all three levels. But some of them are more supportive than others. A friend of mine, a woman in her mid-60s, has applied to Centrelink for a carer’s allowance. There is no question as to her eligibility; she is the primary carer of a partner 10 years older with multiple serious health problems. But she made her initial application before Christmas 2016 and, as I write this on September 8, 2017, she has still not seen any money, even after nine months of phone calls, letters, visits and submission of forms: “If our first language were not English and were we not reasonably intelligent, there is no way we could have completed those forms,” she says. Anyone who has ever had dealings with Centrelink knows that its policies and practices appear to have been designed to discourage people not only from asking the department for money, but from communicating with it at all.
One day near the end of 2016, I had a frantic call from my older sister. The younger one had arrived at our father’s house to find the front door wide open and his walking stick, wallet and keys on the table. But of my father himself, there was no sign. She called my other sister, who lived close by, and then she called the police. I was halfway across town to his house when my sister called me again: “We’ve found him.” Not long after the police had arrived, another car had pulled up outside: a kind woman from a few streets away had found my father on the footpath, clearly in distress, and had managed to coax him into her car, figure out where he lived, and bring him home. My sister checked his heart rate and called an ambulance, and that was the first thing I saw as I turned into his driveway. The two cops and the three ambulance staff were all women, and my dad, now a little recovered, was in his element, enjoying the attention, being charming to all these young women in uniform. Somewhere in the afterlife, my mother was rolling her eyes.
He didn’t like being moved to the aged-care place. He didn’t like it at all. There was protracted crisis and drama, the low point of which was the hospitalisation of my younger sister on Christmas Eve, steamrollered by the stress.
Now, nine months on, my father has bouts of inertia, bouts of reluctant acceptance, and bouts of dotty but clear-eyed humour and calm, as he sits in his large room in his own recliner, with his pictures on the walls and his books on the shelf. He has lost all sense of the passing of time: everything and everyone that he still remembers – all the people, places, dogs and cats, dead or alive, near or far – seem to coexist for him in some perpetual Now. Occasionally he has no idea where he is, and gets volcanically angry when told that this is his room and he has been living in it for nine months. “Bullshit !” he yells, brandishing his stick. Once or twice I have feared that he was going to hit me. Another, darker fear I have is that, if he did hit me, the red mist would descend and I would hit him back. I am my father’s daughter, after all.
When I visit, two or three times a week, I pause at the front door and take a breath to face the possibilities of what I might find when I walk into his room, the possibilities of what I might have to do. I might have to calm him down, or clean him up, or close his eyes.
Medical science invented the treatments for high blood pressure and heart disease that have kept my father alive long enough for him to develop dementia. The quest for ways of keeping people alive for longer is producing lots of very old people with disintegrating brains. In Greek mythology there is a fairly minor character called Tithonus, a handsome mortal with whom Eos, the goddess of dawn, falls in love; she begs Zeus to grant Tithonus immortality, but forgets to ask that he be granted eternal youth as well. So Tithonus gets older and older, while Eos – better known as the Roman goddess Aurora, she of the rosy fingers and the golden arms – stays forever young.
This tale is heavy and ripe with meaning and warning. It’s a “Don’t try to dodge the fates” story, like Macbeth, and it’s also a “Don’t try to usurp the prerogatives of gods” story, like Frankenstein. In Tennyson’s poem of 1860, Tithonus speaks directly to Aurora out of his despair as he watches, from the dawn heavens, the world’s natural cycles of birth and death, where everything and everyone but he is allowed to die.
The woods decay, the woods decay and fall,
The vapours weep their burthen to the ground,
Man comes and tills the field and lies beneath,
And after many a summer dies the swan.
Me only cruel immortality
Consumes: I wither slowly in thine arms
Here at the quiet limit of the world:
A white-hair’d shadow roaming like a dream
The ever-silent spaces of the East,
Far-folded mists, and gleaming halls of morn.
My father is not usually unhappy. He is well cared for, in a clean, comfortable, well-run place where the staff are fond of him. The standard way to deal with the delusions and hallucinations of dementia patients is to go along with the version of reality they seem to be living in at that moment, so when he’s confused or anxious, we tell him whatever he needs to hear: that his parents have probably just been held up somewhere and can’t get to a phone; that the sheep are being well looked after; that our mother will be home soon. “Just as long as your mother and you three girls are all right, that’s all that matters.”
He has a good view from his window. His room is on the first floor, and looks out and away across a calm suburban street. He can see a lot of sky – the gleaming halls of morn – and a couple of big trees, and two or three houses with gardens. When he first moved into this room, at the height of summer, he would talk about how much he enjoyed looking at the trees, watching the changing light on the leaves. Life outside is framed there, and he fits whatever he can see through the window into the vast landscape of his perpetual Now. A gaggle of magpies will be conversing on the grass. A honeyeater in quest of nectar will be digging into the heart of a blossom. A black-and-white cat will be padding down the path in the garden across the street, bent on some unknowable feline errand, here at the quiet limit of the world.
Kerryn Goldsworthy is the winner of the 2017 Horne Prize, a competition founded by Aesop and The Saturday Paper, for an essay on Australian life. This is her winning entry, for which she receives $15,000. Sam Watson was highly commended for his essay “Blood on the Boundary”.
This article was first published in the print edition of The Saturday Paper on Dec 23, 2017 as "The Limit of the World".
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