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Dying alone in the age of COVID-19
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Pass it on
I'm reading
Dying alone in the age of COVID-19
Pass it on
Pass it on
I'm reading
Dying alone in the age of COVID-19
Pass it on
Pass it on
Articles
11 May 2020

Dying alone in the age of COVID-19

Julie Perrin asks, how do we prepare for the profoundly upsetting possibility that accompaniment in death cannot happen?

Written by Julie Perrin

Behind extraordinary ideas, there are extraordinary people. Dumbo Feather is a magazine about these people.

From her garden glowing with autumn colours, a neighbour tells me news from kin who work in emergency healthcare. The triaging will be grim. Another friend who is a hospital chaplain tells me that even now families cannot gather around dying relatives in ICU. This isolation extends beyond Coronavirus patients. Enforced absence strikes deep. Removing the capacity to be present, to accompany, to say farewell, is an unmaking of the fabric of our lives.

Daniel Burke writes for CNN, “Coronavirus preys on what terrifies us: dying alone.” He describes as a primal instinct “the impulse to be close to people we love when they are suffering and near death.” In the context of COVID-19 he says, “It is a painful irony, the very thing we need in moments of fear and anxiety could also kill us.” It may well remove us from the possibility of bearing witness to the death of people we love.

This is a painful and difficult truth. It is hard to know what to do in the face of it.

I ask my neighbour over the garden fence, “How could people prepare for this possibility? How could you ease the pain and guilt for your family if you were the one dying?” My neighbour is experienced in death. She says, “I would write a letter to my daughter. I would tell her I understood the necessity of absence. I would tell her not to feel guilty, that I would be alright.”

The simplicity and courage of this response strikes me to the bone. I know a written message from a loved one can carry huge weight in a crisis. In what seems like a different universe, my 94-year-old mother died in January following a major stroke. Her Advanced Care Plan (ACP) was the thing I could hold onto.

A question appears at the base of the ACP form: “What would you hope for most when you are near the end of your life?” My mother’s words on the page read: “I would want my family to know that I am not afraid of dying.” She went on to say that she would want them to come and be with her “if they wanted to and were able to.” I wonder how she would have phrased that if she knew what we know now.

Back in January, when I saw her lying on a stretcher in Emergency, I wondered if my mother really was unafraid of dying. She was unable to speak and there was a haunted look in her eyes. Of course I don’t know how she felt, but all her instructions suggested she was more afraid of a living death. In the instance of a stroke she wanted no surgery, no intervention, no feeding, only pain relief.

In those last eight days my mother needed only minimal pain relief. And when she died, her fast breathing simply slowed to long spaces between breaths and then stopped. Would it have mattered to her if I was not there? I am not sure that it would. It mattered to me, it helped me to accompany her and to bear witness, but I think my mother was already bent on the business of leaving.

Daniel Burke quotes hospice chaplains who remark on the frequency of people dying in the moments that their vigil-keeping families briefly leave the room. Dying is, after all, something you have to do on your own.

There’s a difference between dying alone and dying without love. Hospice chaplain Kerry Egan says, “In a certain sense we all die alone, even if we are surrounded by people we love. Often, as we die, our bodies are breaking down so our minds are elsewhere. The conscious experience of death, is, by nature, solitary.”

I remember when my children were small, they came to me to show me a dead bird in our garden. The older child spoke the question I could see in the eyes of his sister as well. “Mummy, when the bird dies, is it all by itself?”

A colleague and friend who is a psychologist tells me the pattern that follows a death by suicide. “People will go back over the details of the death, step by step. It is as if they are trying, in retrospect, to place themselves so they can accompany the person they have lost, so they can be with them, so they won’t have to be alone. On the anniversary they will often take themselves to the place the suicide happened. We are wired to accompany each other.”

So how can people prepare for the profoundly upsetting possibility that this primal urge to accompany cannot happen? My neighbour’s instinct is to prepare by writing to her family, releasing and reassuring them against their potential distress. And there is another thing we can still do—we can accompany the bereaved.

Leigh Sales’ remarkable book, Any Ordinary Day, is subtitled ‘blindsides, resilience and what happens after the worst day of your life’. Her interviews and research highlight the significance of standing beside—of accompanying people who have experienced the kind of losses that leave us aghast. In this age of COVID-19, every loss is magnified and has its own degree of heightened fear. 

We cannot stand in the same close proximity we associate with solidarity but we can still acknowledge and make room for others in sorrow. In some ways it takes us back to an earlier era. I see in my own neighbourhood exchanges of care: home-garden flowers arranged in a bottle on a doorstep, a jar of soup, a loaf of sourdough bread, cards delivered through the mail, miniature care packages that include candles and poetry.

We cannot do anything grandiose in this moment. It is time for the small acts of kindness to inhabit the space.

Poet Seamus Heaney died unexpectedly in 2013. At the funeral his son Michael reported that his father’s last words were in a text message sent to his wife minutes before he died. He used his beloved Latin: “Noli timere”—don’t be afraid.

Julie Perrin

Julie Perrin is a Melbourne writer and oral storyteller. Her non-fiction stories, essays and interviews appear in The Age, Eureka Street and Dumbo Feather.

Sixty of these stories now appear in Tender: stories that lean into kindness, published by MediaCom

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