The powerful lesson I learned watching my father die

In these dreams of ourselves a little further in the future, we’re well. We’re still ourselves. But our thoughts about dying are truncated and stunted. We stop at simple, fantastical scenarios: dying peacefully in our sleep, accessing voluntary euthanasia, living out our final years together with a group of friends in a kind of commune where we share the costs of carers. Some of us dream of outfoxing old age entirely through cryogenics, or uploading our brains to the cloud. And so when we think of older people, and especially of aged care residents, or older people with dementia or other physical or cognitive frailties, they belong to a separate group, a group to which we believe we’ll never belong.

To take a macro view, it’s also unsurprising that these casual linguistic dismissals of older people and their value to our society are particularly acute in a country like Australia: a nation home to the oldest continuous culture in the world stretching back tens of thousands of years, but whose dominant culture suffers from a gross historical amnesia and a reluctance to reckon with the histories, legacies and lives of First Nations people. White Australia, with its relentless insistence on youth and the ahistorical claim that we are “young and free”, holds little cultural scope for the contributions of older people.

We aren’t designing an aged care system we’re willing to enter ourselves, because we won’t concede we’ll ever end up there.

Sarah Holland-Batt, author of The Jaguar

Our cultural denial of death also underwrites many of our failures in aged care: the absence of public pressure for change, an industrial-scale political apathy, and relatively muted media coverage on aged care. Until recently, neither of the major parties have seen aged care as a “vote-winner” – something which notably changed in the recent federal election, where Labor made it a centrepiece of its campaign – and journalists and commentators frequently say that aged care “isn’t a sexy topic”.

The pervasive apathy about aged care has unquestionably allowed neglect to flourish. But it also often means that we don’t apply enough imagination and ambition to the problem of aged care reform, either. There are revolutionary examples overseas of aged care facilities co-located with university students, or childcare centres, which allow residents to stay connected to their communities. These changes radically alter what going into aged care means, yet we aren’t demanding them in Australia. We aren’t designing an aged care system we’re willing to enter ourselves, because we won’t concede we’ll ever end up there.

But after watching my father in his 20-year trajectory with Parkinson’s, dementia and aged care, I’ve come to my own thesis. Not only do we have a duty to look at and to contemplate ageing, aged care, and death, but that there’s power in that gaze, and in fact it’s only through that gaze that we can live fully, aware of the full weight and meaning of life and its inevitable ending.

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When you watch someone you love decline over time, it can feel like an ordeal. You note the changes and mourn them. As my father declined, I noticed the loss of his brilliance, his sense of humour, his intellect, the shared jokes and references we used to make. I watched as his interest in his dazzlingly various hobbies – classical music, tinkering with cars, computer programming, playing the piano, the harmonica, reading – moved out of reach.

I mourned when he found himself confined to a wheelchair, then when his voice weakened, when he had difficulty eating. Sometimes I’d sit with him and realise he was hallucinating a reality we weren’t sharing. Initially, I resented my role as witness to these indignities. It felt like a burden to have to watch these things happen over time.

But as the years passed, watching my father enter into old age and dementia changed me. I came to understand that while I was living in the past, mourning a person who hadn’t been there for some time, my father was still living in the present tense, in front of me, still capable of joy and sorrow, distress and calm.

As time went on, my father gave me the gift of a great perspective it might have taken me a lifetime to reach: an understanding that if ageing and dying was happening to him, then it would happen to everyone, and it would happen to me. In the week it took Dad to die in hospital, I felt this even more acutely: his dying was his last lesson.

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In the small hospital room on the Gold Coast where my father died, I found my mind oscillating between focusing on the immediate world – the mock-orange bushes teeming with ladybirds in the courtyard outside my father’s room, the sounds of boys playing cricket on the oval beside the hospital – and the vast frontier, the end of the body, the end of the mind, my father was facing. Psychologists call this ontological confrontation: the keen and immediate awareness of our mortality, the puncturing of our fantasies and denial. The sharpest and most revelatory understanding I reached in those days was that death is not an extraordinary event, but utterly ordinary, present everywhere, a force that no human denial can stop.

While our psyches are primed to reject information that threatens us and reminds us of our own mortality, there’s power in trying, even if it’s discomforting: the power to help shape what kind of old age we ourselves will have, the power to reshape our aged care system and the way we care for our elders, and to help change how our collective culture will view us when we get old.

This is a condensed version of Sarah Holland-Batt’s Curiosity Lecture at the 2022 Sydney Writers’ Festival, “Our Denial of Ageing”.

Sarah Holland-Batt is the author of The Jaguar (UQP) out now.

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