THIS BUSINESS OF DYING ISN'T FOR THE FAINT OF HEART
August 21, 2004
It takes a certain kind of toughness to sit by the bedside and see your parent to his or her death. Especially if that's your job -- to sit.
We think we're there to minister to our parent's shrinking needs, tending to the small details of grooming, wetting cracked lips, comforting. We're also meant to be there to ensure our parent doesn't rage alone against the dying of the light.
The truth is, most of us miss the moment of death. Or worse, it sneaks by our defences and finds us unprepared and inept.
"This business of dying isn't for the faint of heart," one of my patients said about her journey to the family home to help her mother. The elderly woman was frail, but she wasn't dying, at least not at the moment when her daughter made the trip home unbidden.
Her mother had lived a hard life. The past few years had seen her increasingly isolated after she had had to put her husband in a hospital, his mind lost in a child's world.
Still, she soldiered on, physical infirmities mushrooming, compounded by her inability to let go of the old crutches of cigarettes and beer to get through the day. So the announcement of cancer was no surprise, and the treatment expectations were half-hearted at best.
While the daughter had little in common with her parents, she did have a strong sense of duty. Having struggled to get a nursing degree, a feat unheard of in those rural parts and sniffed at by some as evidence of rising above her station, the daughter had moved long ago to the big city.
And through her years as an intensive-care nurse, she had mastered tough assignments, alleviating catastrophic outcomes.
She had guided the hands of inexperienced doctors, pushed to make critical and unalterable decisions. So how was it that with such preparation, setting this goal for herself -- to be at her mother's bedside when she died -- could be such a challenge?
The complications of chemotherapy had brought her mother to death's door before, but the old woman's feistiness always prevailed.
Yet even while she joked about being indestructible, it was clear in her tone that she felt somehow cheated by not being released from a life she was ready to leave. Her daughter foresaw the decline and began to prepare.
She knew the discussion about not engaging in measures to hold off death yet again needed a source other than herself. So she carefully engineered the chat between the family doctor and her mother. All the scenarios were laid out and mom assented to no more treatments, no more transfusions, no IVs, no crisis interventions.
The daughter stepped in to provide the nursing care. Everybody on the ward knew her and they kind of expected her to do it anyway. Most of the nurses stayed out of the way, deferring, so it seemed, to the expertise of the big-city nurse. Perhaps that was what underscored the isolation and aloneness for her.
Arriving home late one day, she got the phone call to return urgently. Through the long night, she nursed her dying mother. "Never have I seen so much blood," she had said and that's when she added: "It's not for the faint of heart."
It was a harsh death for the mother and a brutal undertaking for herself. Her own husband and child in a distant city, her father not able to grasp another loss, everyone around her assuming her mastery of the events, she had never felt so alone.
What can we learn from her pain?
Not only are there certain skills needed in helping people to die, but the process itself is a team effort and even the most stalwart can use a hand of comfort.
For another of my patients, this year has dissolved into a cycle of working all week and, on Friday afternoon, driving from Toronto to Rochester, N.Y., to help care for her ailing mother. She had tried to bring her mom to Canada, expecting that arrangements here would be more workable, but issues such as cross-border care quickly made that option unworkable.
Quietly becoming more desperate and anticipating having to take a leave of absence from her own solo-run business, help suddenly arrived from an unusual source.
My patient's mother was now in need of constant care. But the fees for even partial nursing care were already eating up her meagre pension and threatening her only asset, her home.
Her church had a list of women who could be hired as caregivers and sitters, not professionally trained mind you, but able to provide a different kind of assurance, that of knowing each other, pooling ideas and resources, all the while providing companionship to offset long hours spent alone. One of these sensitive women was even able to take my patient's mother, on one of her better days, to her own son's graduation.
From a distance, this aging woman is the recipient of a community's spirit of giving. The church has also filled a vacuum that her daughter was only just beginning to grasp in its enormity. It is a fellowship, which has become personalized and is as much an anchor for her as it is sustenance for her mother. Its affordability is a bonus that relieves everyone's anxiety about having to scrimp or move this woman into smaller meaner quarters.
When the daughter finally gets the call to come, she will not be sitting alone by her mother's bedside unsupported, nor will her mother feel isolated. For while we all die alone, helping our loved ones die with us in their sight may certainly take toughness, but it is also one of gentlest, most loving gestures children can offer back to their parent.