Katherine Arnup, PhD

Carleton University, Ottawa, Canada

“You’re going to be an expert at this by the time you’re done with me,” my sister joked, shortly before her death from cancer at 51.

“Maybe,” I protested, “but I don’t want to learn it from you.”

Four years later, I began volunteering at a hospice near my home. By the time my father was diagnosed with a life-threatening blood disorder, I was already deeply involved in caring for the dying. Some days it felt nurturing to be caring for people who were dying, talking to them in ways I could not talk to my father, a proud and private man. As I cared for other people’s elderly parents, I marveled at how readily they trusted me, relaxing in my hands, the hands of a daughter who, unbeknownst to them, was caring for her own father. Yet despite my hospice work, my father and I rarely talked about dying, about the fact that he had a terminal illness and it was only a matter of time before it would take his life.

Until his final illness struck, my father had been a powerful person—a corporate lawyer, Justice of the Provincial Supreme Court of Appeal, Treasurer of the Law Society. Even at 92 he chaired an important legal committee. But now he found himself in unfamiliar, perhaps terrifying terrain.

“Dad,” I said, when I arrived for a visit a month before he died, “You can tell me this is none of my business, but I’m worried about you. You don’t seem to have anything you’re looking forward to.”

“Well,” he said, “I've had visits with a few good friends. Apart from that, what is there to look forward to?” He paused. “It’s not as though anyone comes and sits in that chair you’re sitting in and says, ‘John, how do you feel about dying? How long do you think you have left?’ We all just act as if this were normal.” This was the first time he had uttered the word “dying”.

“I think we take our lead from you, Dad, and mostly you don’t seem to want to talk about dying.”

“No,” he said. “I suppose not. But I don’t really see that there’s anything to say.”

“I know you’re not a person who talks about your feelings but sometimes people find it helps. If you’d like to, I’d be happy to talk about it.”

And so we talked.

 “It isn’t as though it were a tragedy,” he said.

“It?” I wondered. “You mean, your dying?" I asked.

“Yes, I mean, it’s not as it was with your sister, dying at 51. I’m 94.”

“The fact that you’re 94 doesn’t mean it’s not hard,” I said.

He looked at me, perplexed.

“Dad, you’ve had a long time to get used to being in the world. It’s not an easy habit to give up.”

“I suppose not,” he nodded, and turned back to the television.

***

On the day that my father would die, I felt in the grip of events I could not understand. I sat down to work but could not concentrate. I sent emails, talked on the phone, stared into space. Finally, I called my younger sister at my father’s.

“How’s it going?” I asked. “Is Dad there with you?”

“He’s right here,” she said. “He’s sleeping.”

“In his bed?”

“Yes,” she said. “When I came, he said to me, 'I have two things to say to you,' before he fell silent.”

My father was a man who finished whatever he started. My father spoke deliberately, each word chosen for its exact purpose. When I was younger, I hated the slow pace of his speech. I longed to complete his sentences. And that day, he left me with, “I have two things to say to you.”

He never spoke again. What were the things he wanted to say? Were they mundane like, “Don't forget to pay the cable bill. My shirts are ready at the cleaners.” Were they words of advice—wisdom garnered from 94 years of living—such as, “Never forget to tell your secretary that you appreciate her work, and not just on Secretary's Day. Take at least a month off every year.” Maybe they were spiritual messages like, “Death is not the end of life, only the beginning.” Or perhaps they were messages meant only for my sister, “I’ve always been proud of you. I hope you are happy.”

Had I been at his bedside, I might have tried to wake him up. “Dad, what did you mean? You can't leave. I need to know. I might even have been cruel, offering him water, a cold facecloth. To her credit, my younger sister simply let him sleep.

To this day, I wonder what he meant. I imagine him lying in his double bed in his bedroom in his apartment. He steadfastly refused to get a hospital bed, despite the insistence of his daughters and his caregivers. He had no intention of being cared for. He refused to move to assisted living or to entertain the possibility of palliative care. He meant to die at home, in his own bed, in his own pajamas.

Later that evening, I called Dad's apartment again. His caregiver answered.

“Is he sleeping?” I asked.

“Yes. We’re putting compresses on his forehead and his feet. He’s comfortable.”

“What’s that noise,” I asked, hearing a strangely familiar sound. A rattle followed by a moan.

“That’s your Dad,” she said.

A sound so generic, the death rattle, yet, so specific: the sound of my father dying.

“It won’t be long now,” she said.

An hour later, the phone rang. “Katherine, your Dad passed two minutes ago.”

“Oh,” I said. And I began to cry.

“We’re just cleaning him up now. It was shift-change time so there were two of us here.”

“Was it peaceful?” I asked.

“Yes, it was,” she answered.

I was not with him when he died. He had not wanted that.

“Dad,” I remember asking once, “do you want one of us to be there when you die?”

“I don’t need you here,” he had said. “I just don’t want to die alone or in screaming pain.”

Why would he not want one of his daughters with him when he died? Perhaps it was because dying is so intimate, and we were never intimate with our father.

I never saw my father in anything more revealing than pajamas and, even then, they were always covered by a plaid Vyella robe closed tightly with a sash. Even when he was dying, I never saw him naked. Only once did we come close. One evening, when his caregiver was out, my father had an accident trying to make the trip from his chair to the bathroom with his walker. I remember the shame on his face. My father, a man of enormous dignity, had soaked his pajamas. In an instant, I became a hospice volunteer, calling upon that mixture of compassion and professionalism. I fetched a clean pair of pajama bottoms from his dresser and helped him pull down his soiled bottoms. The pajama top was long, preserving some measure of dignity. “It's OK,” I said, “just step out.” Then I helped him step into the clean pair, pulling them up to his waist. “Don't sit down yet,” I said, as I changed the blue soaker pad protecting his chair. “Do you still need to go to the bathroom?”

“Yes,” he said.

“I could bring you the urinal.”

“All right,” he said, gasping to catch his breath. I busied myself in the kitchen, and then discretely retrieved the green plastic receptacle once the task was completed.

With that exception, caring for my father never felt intimate. As much as he hated it, he let the women from Home Care with Care tend to his personal needs. He didn't want his daughters bathing or cleaning him.

Did he fear crossing some boundary of intimacy when he died?

Was he afraid of embarrassing himself, of calling out in fear as the moment of death arrived?

Perhaps he wanted to protect us. Perhaps he thought it would be too hard for us to watch him leave the world.

***

Six weeks after my father died, as I walked down the hospice corridor, I could hear the familiar breathing. Death rattle. Someone was actively dying.

“His daughter will need a lot of TLC,” the coordinator told me, during the briefing. “She’s battling cancer herself.”

At 10:30 am, I went into Samuel’s room to find his daughter, talking gently, stroking his hand. I stood at the bedside with her.

“My father died six weeks ago,” I told her, though I rarely talk about my own life at hospice.

“Were you with him?” she asked.

I hesitated. Just for a moment, I felt badly that I hadn't been with him, afraid even that she might judge me.

“No,” I said. “He was in Toronto and I couldn’t get there in time. But he always said it wasn’t important to him that we be there at the end. He just didn’t want to die alone.”

“I don’t know what my father would want,” she said. “We never talked about it.” She gathered her belongings, preparing to leave for her appointment at the cancer clinic.

“Leave your cell phone on,” I said quietly.

When she was gone, I sat in the chair beside Samuel. The gaps in his breathing were growing longer. Thirty seconds. Forty. A full minute. Then a gasp for air, and another breath. Then it was very still. I sat quietly. I thought of my father, passing peacefully, in the company of other women.

I brought my mind back to the room. Listening. Two minutes. Three. Four. I knew he was gone. I sat for another minute in the stillness of that moment between life and death. When the nurse passed by the room, I signaled to her.

“He’s gone,” I said.

She joined me at the bedside, checked his pulse. “Yes,” she said. “I’ll call his daughter.”

“Tell her I was with him, okay? Please tell her he wasn’t alone.”

 


KATHERINE ARNUP, PhD is an Associate Professor in the School of Canadian Studies at Carleton University, with expertise in the history of motherhood and the family. She is the author of Education for motherhood: advice for mothers in twentieth century Canada (University of Toronto Press, 1994) and editor of Lesbian parenting (1995/97). She is currently writing a book entitled Dying time, based on her experiences of caring for her sister and parents and her decade of volunteering in a residential hospice.