Carolynn Bilton comforts her mother Margie Harper in her final days in palliative care. Photo courtesy of Harper family

Sisters find joy in mom’s final journey

By  Thandiwe Konguavi, Canadian Catholic News
  • December 10, 2017
EDMONTON – Margie Harper entered the hospital last year on the first day of Lent, her forehead still bearing a dark smudge from the Ash Wednesday Mass.

At first, her daughters Margo Harper and Carolynn Bilton thought their mother had pneumonia and she would recover. But it quickly became clear she would not be going home to Paintearth Lodge, the seniors home in the central Alberta town of Castor where she had lived her last years.

So Margo and Carolynn settled into the palliative care room of Our Lady of the Rosary Hospital for the longest sleepover they’d had with Mom since they were children — and a life-changing Lenten journey by her side.

“At one point in Mom’s last days, she asked … if we were all together in hospital on a spiritual retreat,” said Margo. “We didn’t know it then, but Mom, the answer is yes.”

Margie died on April 1, a full 30 days after entering the Castor hospital. She was 97.  

The story underscores the significant impact that palliative care — attending to the physical, metnal and spiritual needs of a dying person — can have on a person and their family. It’s a growing discipline in medicine, but one to which the majority of Canadians have no access. 

“It was a beautiful, final time, a beautiful death,” remembers Carolynn. “What was so beautiful was that the hospital allowed us the space to make this journey with Mom. 

“I believe that people have different experiences with this death journey, but I also really believe that most people don’t want to walk the journey alone. And I believe that our experience speaks to the philosophy of the Catholic hospitals’ real respect for life and real respect for the dying and for their families.”

Margie’s last days were filled with singing, poetry, champagne, cake, laughter, lots of prayer, lots of tears and lots of family. 

“She was dying and we were supporting her dying process, but there was also living,” said Margo. 

Extended family members gathered around her bed, holding hands, reminiscing about the past, sharing grief, sharing joy. “Children and grandchildren kissing Mom goodbye, stroking her hands, experiencing death and loss not from a distance but up close, seeing that death is normal, natural and not something to be feared,” said Margo. 

“Even though she was in excruciating pain at times, I could see her transcend that and kind of give over her spirit to the people who came to see her. And she created this kind of sacred space that was just full of love.” 

For Margo, a Vancouver-based journalist who had pulled away from her faith over the years, the experience brought renewal. 

“I think this journey with Mom was a real return,” she said. “We experienced the power of prayer, particularly Hail Mary. We felt the absolute healing power of prayer and the comforting power of prayer in a way that I think I had not before. It feels like a much more personal God to me than I had ever experienced.” 

“She seemed often to be looking at Heaven, at Jesus, at the great mystery,” added Carolynn. “Whatever it was, in the end there was no fear, no grasping, no clinging to this world. She was moving on. It was a tremendous thing to witness. I believe that Mom taught us not only how to live, she also taught us how to die.”

It was the renewed faith the sisters received at that hospital bedside that gave them the power and strength to care for their dying mother, who, having been a nurse herself for 45 years, had cared for so many others in her life. 

“My mom really believed that in every sick person, in every lonely person, in every abandoned person, you saw the face of Christ,” said Margo. For the baby boomer generation, whose parents are now aging, death is the next frontier, said Margo. 

“We’re all going to have to confront it, and are we going to warehouse our dying? Are we going to lock them away? Are we going to isolate them, or are we going to actually experience it as a journey of faith and as a part of life? That’s kind of what it meant to me.”

Dr. Konrad Fassbender, Scientific Director for the Covenant Health Palliative Institute, says a patient-centred philosophy is foundational to palliative care. In other branches of medicine, the medical specialist makes recommendations to the patient based on their expertise, but in palliative care, the patients tell the caregivers what is important to them.

“In palliative care, the conversation starts with what is most important to you, and what is the kind of care and quality of life that you wish, and how do we achieve that,” said Fassbender.  

The way health-care providers look after the dying has changed. Fassbender notes that advances in medical technology over the last 100 years have doubled the average lifespan, with the result that medicine as a whole has become focused on extending the length of life. Think of the words often used around cancer cases: fight, be a champion, survive.

“What we’re learning and what we’ve learned through the last 40 years in palliative medicine is that the dying process should not be focused exclusively on extending the length of life but that we should also look at the quality of life.”

While Margie’s experience exemplifies the benefits of palliative care, many dying Canadians are not so fortunate. Only 58 per cent of Canadians are aware of what palliative care is, according to a 2016 report from global market research firm Ipsos. Only a third of patients who die in Canada access specialized palliative care, according to the Palliative Institute.

“What we as a society need to do is to educate on what is palliative care,” said Fassbender.

(Grandin Media)

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