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My 70-year-old father died during the pandemic. He did not die of COVID-19 but he did die for it.
Do not mistake this as an indictment of public-health authorities. Instead, see it as another reason to abide by public-safety measures, to continue with a hundred tiresome, inconvenient, disappointing personal losses and sacrifices so that the immense sacrifice my father and his family made, our most profound of losses, can have the greatest impact possible.
By the time my province shut down in response to the pandemic, my father was in the end stages of a terminal disease – the long, painful windup to a vibrant life. He had seven children, 24 grandchildren, and we followed public-health recommendations to keep him safe from the virus, including visits that had us standing in the snow outside the window of his suburban home.
It worked. He was never infected. But he was still terminally ill, and weeks into the lockdown, his disease triggered seizures that sent him to the hospital by ambulance. A few days after his admission, all hospital visitors were banned. Despite Dad’s frailty, he was dying too slowly to be considered “imminently dying,” and none of us was permitted to see him.
We had three choices: 1) send him to a long-term care facility during a pandemic when all the infection hot spots in Alberta that weren’t meat-packing plants were long-term care facilities, and to send him there alone, indefinitely, without family support to manage the devastating anxiety that was part of his illness; 2) send my sister with her Master's degree in nursing ethics off to battle, Alberta’s Patient’s Bill of Rights in hand, to demand our individual rights override collective interests; 3) downgrade Dad’s “goals of care” from medical interventions, which may or may not prolong his life, to “comfort care” aimed at taking off the edge of pain and fear of what would then certainly be the last few weeks of his life.
Dad made his wishes clear. He chose to come home to comfort care, knowing he wouldn’t survive for long. He chose the imminence of his death.
Dad’s daughter with the MSc in nursing was capable of managing his home-care with a palliative-care doctor supervising her by telephone. In addition to our family’s help, Dad had the support of a visiting home-care nurse, and a personal-care aide who would come three times a day. There was also “the pamphlet”: a document produced by Alberta Health Services called “What to Expect as Death Approaches.” Its tag line, which I now know was actually a disclaimer, was, “Just as one’s life is unique, so is one’s death.” Results may vary, no promises, no guarantees expressed or implied. Perhaps this has never been truer in the postwar era than it is in the days of dying at home during COVID-19.
My family is fairly high functioning. At least, that’s what the home-care nurse told us. She said home deaths, even in the best of times, are the hardest, and that our family’s care for our Dad was excellent. It was comforting to hear her say this as my sister and I rolled our unconscious father onto his side and held him while she worked on him.
Our family hasn’t been Catholic since the 1890s, but it struck me anyway, like inspiration from the ghost of my great-great-grandfather, that the four of us looked something like old paintings of the 14th station of the cross, Jesus is laid in the tomb.
But not yet.
Thanks to my sister and our sheer numbers, our family was well-equipped to help Dad have his home death. Not every family is. Even so, many are making the same choice we did when faced with leaving a family member to die alone – gathering on Zoom to see them breathe their last. Like us, they opt to bring their parents home to die in their arms.
Our personal-care aides, employed by a private contractor, were working extended hours to meet the newly increased demand for home-care. They were exhausted and told to limit themselves to one face mask for several days of work. It’s no surprise they were quitting in fear and frustration.
In addition to strains on human resources, specialized palliative drugs typically administered in medical institutions were suddenly in greater demand in the community, where supply chains were inadequate. This meant daily treks to specialized pharmacies to purchase small quantities of drugs as we shared them with the other home-care families, always fretting over our supply running out.
My sister/nurse trained us, even me, a graduate student in literature, to administer these powerful, potentially lethal drugs. In an institutional setting, the drugs would have been administered by professionals through regulated IV pumps. At home, we measured, drew up, and pressed the plunger down on every drop of medication ourselves. Their cause and effect was clear and unpredictably fraught with feelings of relief or of guilt.
These feelings brought more Renaissance Christian paintings to mind – the Last Supper, where Jesus announces that someone in his inner circle has betrayed him, and the apostles go around the table asking, “Is it I?”
This, I was learning, was palliative care: medicating patients to manage the crises of pain, nausea and panic that come with the end of life. It meant sedation. It meant when my father got agitated enough to reach for and past us, it was time for more medication, time to sink him deeper.
Ideally, it wouldn’t have been us. Because of the pandemic it was us, and it has been and will be many other families as well. We were well-equipped to handle it, and it was still nearly unbearable.
The eradication of the middle ground of dying, the disappearance of the option of families attending deaths in hospices and hospitals, leaving patients and families with only two choices, dying alone or dying at home, has to end. But unlimited visitation privileges will not end it – not for long.
Suspicion and antagonism toward medical and vaccine research, private and public, will not end it. Flouting public health regulations and guidelines will not end it. Rushed openings of what is locked down will not end it. Declarations driven by politics, economics and willful blindness will not end it.
Incomprehensible as the scope of it is, even to me, my family’s sacrifice will not end it – not alone. It will mean very little if it is not magnified by billions of others. The greater good has always been built on individual sacrifices. This was ours.
Jennifer Quist lives in Edmonton.