Losing My Father, the Slow Way

He took the long way down

Visiting my father with my dog in 2018, a year before his death

My father, Hugh Newton-John, was a physician and infectious diseases specialist. One day, during a patient consult, something strange happened. He got up to examine the patient, and by the time he had come around the desk, found he had forgotten what it was that he’d stood up to do. It was a striking enough incident that he made a note of it in his diary. Not long after that, he went to a conference on the latest developments in his field and, after listening to a series of presentations that he found he could not understand, went to return to his car, only to find he had no idea where he’d left it.

At home, his wife was growing increasingly frustrated with his lapses and erratic behaviour. One time he was making sandwiches and she came to give him instructions on what was to go into each one, only for him to forget almost instantly what she had said. That was when he truly knew something was wrong. As a doctor, he must have guessed what lay ahead. He came in to her, panicked and in tears. Not long afterwards, he went to a neurologist for a cognitive test, feeling like he was on trial for his life. The results confirmed his worst fears.

Hugh was a brilliant man. He’d come equal top of his class in medicine at Melbourne University and was highly respected expert in the field of respiratory diseases. Over his career, he photographed tens of thousands of patients, collating thousands of transparencies of different disease presentations, a database that is still used in the education of medical students at the Alfred Hospital in Melbourne. The scope of his influence on the medical fraternity in Melbourne is still evident. When I go to a doctor, I am still sometimes asked if I am related to him, a welcome change from the more common enquiry about my more famous relative Olivia, Hugh’s sister.

He played a dozen different woodwind instruments to a high degree of proficiency, sketched with an artist’s sensitivity, and had a prodigious inventive gift, helping design the first portable ventilator at a time when most patients who could not breathe on their own were confined to “iron lungs”: massive, unwieldy contraptions resembling a small submersible.

He was also quite possibly on the autism spectrum — at least he might well have been diagnosed as such if he’d been born today. His patients adored him, but his gentle, reassuring manner concealed interpersonal difficulties. As a child I could never understand my mother’s sometimes ill-concealed fury towards him, and internally always sided with him in their fights, which usually took the form of lop-sided harangues. He was always so reasonable! She was always so hysterical! A scene appears before my mind’s eye: her crying at the dinner table over some domestic upset, and him reaching out to take her hand, solemnly and, I now see, insincerely and condescendingly. To every display of distress, he rolled out the same, poe-faced “bedside manner”.

In one of those mental contortions by which we maintain our treasured fictions, I had somehow always felt that it was my mother who was to blame for the lack of closeness I felt from my father. In some vague and unspecified way, I believed that the need for him to manage her emotional instability had come between us. So when they separated when I was eighteen, I was convinced that we would finally become close. Of course, it did not happen. Without her to rein him in, his tendency to lose himself in his work only grew more pronounced. I was still living at home with him, but he never came home until late in the evenings, and when he did, he barely spoke to me.

Later, after the family home was sold and he entered into a new relationship, I never heard from him at all. Birthdays and even Christmases passed in silence. Eventually I wrote him a letter expressing my feelings of anger, sadness and disappointment. I never received a reply. I next saw him by chance while visiting my grandmother. I asked him why he never responded to my letter. “I didn’t know what to say,” was the best that he could come up with.

All this to explain, if not justify, why I did not visit him more often when, two years after his Alzheimers diagnosis, his wife admitted him to a nursing home. He was blindsided. She simply dropped him off with a suitcase of his belongings, and he was left to slowly understand that she was never returning. He felt stunned and betrayed, but it was not seeing his young daughter that cut him to the quick. She, the child of his new marriage, must have been seven or eight at the time. She was a prodigy herself, writing four-part harmony for their choir when she was six, and compiling entomological tomes as charming as they were precocious. He loved her dearly, and the pain of missing her would only pass when the progression of his illness had finally erased her from his memory.

I would visit him every few weeks or months and find him always there in his little room — a striking contrast to the neighbouring ones, with its walls covered in the little watercolours of butterflies that he painted to pass the time. Eventually he produced larger paintings; the one on his door was a rip-off of some classical painting of Leda and the Swan. In it, his decline was more evident. He struggled to control the forms, and the whole painting came across as both childish and lifeless.

Depression now blew up like a storm. I took him out on a day trip to Warburton, a picturesque town in the Yarra Valley not far out of Melbourne, and for the whole trip, his increasingly disjointed speech circled some gloomy internal star. He had become obsessed with his medical failures. He told me about a patient with bizarre symptoms who came up negative on every test, until at last a blood test revealed her blood to be awash with proteins. He realised at once that snake venom was dissolving her internal organs, found the puncture marks on her leg, but by then it was too late. I tried to reorient him: what about a positive memory? I asked. “A positive one?” he said, drawing a blank. Eventually he launched into an even more terrible story of a patient who committed suicide after he discharged her, having failed to recognize the dire state of her mental health. The pull of his dark star was inescapable.

The Alzheimers started stealing his life in reverse. Layers of his psyche evaporated until childhood appeared, as pristine as if it had been buried yesterday. He told me stories that began to explain the man I’d never really known. His father, Brinley Newton-John, had been a stern and remote father. He had worked for MI-5 during the war, using his remarkable linguistic gifts to interrogate captured Luftwaffe officers. He had taken them out of their POW camps to wine and dine them, regaling them in his native-level German until they began to forget he was the enemy, and the wine loosened their secrets.

I knew all this. What I did not know was that at some time during the war he had vanished without explanation, leaving his German wife Irene alone in the small English village where the family had been relocated during the Blitz. Naturally she was ostracised — the locals not being capable of distinguishing “German Jewish” from simply “German” — and terribly lonely. Eighteen months later he returned without a word, and family life, such as it was, resumed. Then one day the post brought an envelope containing a letter and a ring. Hugh remembered them burning a hole in the dining room table, the air fit to cut with a knife.

Hugh, in 1943

He recalled riding his bicycle around a Lancaster bomber on a nearby airfield, a beast so monstrous in size to his child’s eyes that it appeared as permanent a fixture as the Sphinx. And then one day it was gone, an impossible mystery. He drew pictures of soldiers, bullets like stabbing rain, fighter planes. Then a German airman came down in a nearby field. He saw the plane burst into flames, the pilot run around burning, silently, until finally he fell down. Trauma, stripped of seventy years’ worth of repression, was floating free of its moorings.

Then that stage was over. His language began to fall apart. The depression cleared, leaving him strangely cheerful and hilarious. My brother Jeremy and I visited him. He could not have named who we were any more, but at some level we knew he knew. I explained that I was his son, and he was both astonished and faintly embarrassed. “I feel like that’s something I should have known,” he said.

At that point he still knew his mind was malfunctioning. He tried to explain to us the phenomenology of dementia, which turned ordinary life into an endless series of bizarre surprises. “It’s as if you suddenly presented me with a dead cow!” he said. There was some irresistible sense of comedy and good cheer in the air — we all felt a bit giddy and high — and Jeremy and I could not stop laughing. But he looked hurt. We had been laughing with him, and now, just a little bit, we had laughed at him. He could not make sense of much in his world, but he could still hear the music of a laugh.

One time I visited him and he was sitting in an armchair cradling a large baby doll, cooing to it just as if were real. This time he did not really register me and I stood awkwardly next to him, waiting for something to click. Beside him another Alzheimers patient sat scowling, a cloud of bitterness seeming to hang over her. She asked me what I thought I was doing, and I explained that Hugh was my father. She thought for a moment and then remarked that she had had two fathers. “Don’t know how they did it, really,” she mused, another moment of dementia comedy where one had to stifle the urge to laugh.

When she talked it was all in resentment-laden complaints, as if everything and everyone were a burden. It was a habitual narrative in which she was perpetually put upon, and yet all the characters of the original story had merged and dissolved, the plot had disintegrated. All that was left was the attitude, as if the whole of her life boiled down to this bitter residue, this mantra of everyone’s tiresomeness. Beware of your narrative, I thought; in the end it may be all you’re left with.

And yet here was Hugh, never a man one would describe as cheerful, somehow transformed into this ruddy, affable gnome. He could be goofy now that he had shed the burdens of being an adult, a doctor, a man of science and culture, and yet sometimes I recoiled from something awful in his puerile japes. It was the face of death shining through his silly, yellow-toothed grin.

And death was coming now, slowly but surely. The butterflies were gone from his walls and he spent his days on the high security dementia ward, hunched over in a chair, a wispy-haired Gollum. I’d come in and that godawful smell of nursing home dinnertime would hit me — over-boiled vegetables, industrial packs of barely edible old-person food — and Hugh would be sitting at a table alone, slowly and vacantly conveying the Soylent Green mouthwards. I would crouch next to him, put a hand on his arm and try to raise him from the stagnant depths of his trance. Sometimes he would let me guide him to a place in the garden where we would sit and pass the time performing a ritual of exchanged words that had long since lost any semblance of meaning.

I slowly understood something that saddened me profoundly. All those times when I came in and he seemed so overflowing with good cheer: those weren’t neutral observations of his state of mind. When I was not there, he was this hunched and doomed semi-zombie, losing his grip on everything that made him who he was, his memories of everyone he had ever known. He was full of happiness in those moments because I had come to visit him.

All this time I had told myself that he didn’t recognize me anyway, or that he had chosen to cut me off and never call me on my birthday so what he could he expect from me now? But what did any of that matter, now that he was reduced to this husk, this soul starved of memory? What did it matter if he knew who I was? Were we not now naked of history in each others’ eyes? With my simple presence I could bring joy to this dying man, my father, and I had been stingy with that gift.

I came to him in his last hours. He was in the throes of some reckoning. He lay on his back on the bed, dreams chasing themselves across his face like demons in a Heironymous Bosch painting. I played him Leonard Cohen, and I saw him still and hearken, that deep music reaching into him. Oh the sisters of mercy, they are not departed or gone. Someone had told me that the dying need tender touch, but when I touched his brow, his face contorted in anger and I withdrew my hand like I’d been burned.

The nurse said it might take weeks, but he was gone in two days. I took the call on the train to work, got off at the next station, and caught the train home again. Outside the window, I was struck by how the world had been transformed by his no longer being in it, and yet all went on as before. The winter wind blew in the eucalyptus, people scurried before the rain.

I still have nightmares sometimes. In these dreams the awfulness of his derangement is distilled to an ineffable horror. It took me a long time to truly understand the fear of dementia that my father’s death instilled in me, a terror that goes beyond even grim nursing homes and loneliness and the cruel indignities of senility. In the end I came to see that it is this: to those of us who seek in wisdom and understanding some kind of transcendence of the dark lot of humanity, there can be no more terrible realisation than that the mind is no master of death. We can spend a lifetime climbing a hill towards the light, and in the end we can still slide helplessly down into the mire of the amyloid plaques, a plaything of biology with a stupid grin on our face.