May 5 to 11 was National Hospice Palliative Care Week in Canada. “Palliative care” is a phrase we are familiar with, but apparently, don’t understand: According to the Canadian Hospice Palliative Care Association, more than 252,000 Canadians died in 2010 and 90 per cent of them could have benefited from hospice palliative care.
Nearly all of them.
And yet, palliative care is all around us.
“It’s about end of life care,” explains Gerry Helm, chair of the non-profit Palliative Care Society of Cumberland County. “It’s a philosophy of care that can be done anywhere a person says their home is. We do palliative care in hospitals, in long-term care facilities, we do it in seniors’ homes, we do it in private homes. It’s the idea of controlling pain and symptoms and having people live until they die. Not waiting to die but able to be active and to do what they can for as long as they can.”
It’s about people living until they die. What a hopeful, peaceful, comforting way to think about something that is, let’s face it, inevitable and scary.
“By talking about it, we get rid of all the fear around it,” Gerry says. “At least you have an idea about what to expect. Why not do it on your own terms at least as much as you can? And most of us want to be in our own homes if we can manage it.”
As a nurse in Amherst for 35 years, Gerry, who lives in Tidnish Bridge, has seen life at its beginning and at its end. After retiring, she volunteered with VON palliative care program then became their volunteer coordinator. After that, she became the chair of the non-profit palliative care society.
Her work with VON became very personal after her mother was diagnosed with ALS at the age of 72.
“She never spent a day in a hospital,” Gerry says. “There were five of us in the family and two of us were nurses so already you know that we were better off than other families. We promised our mom when she was diagnosed that she would never be alone. And the five of us, along with spouses, were able to do that.”
As the disease progressed, Gerry’s mother’s voice got quieter and quieter, she became unable to walk, then she couldn’t feed herself. But with some creative modifications, she was able to do puzzles and play cards.
“We were grieving every loss,” admits Gerry, “but her mind was sharp. And she was home.”
As a nurse and as a daughter, Gerry appreciates most what palliative care means when someone actually passes.
“The day that [my mother] died, she was in a recliner because it was easier for her to breathe sitting up and we were all there. She just slipped away. We carried her into her room and put her on the bed and everyone had a chance to say goodbye by themselves with her. We called the funeral home and they took Mom when we were ready. It was so easy. It was so calm. It was so much easier than calling 9-1-1 and the police come and the paramedics, they have to do CPR. If someone dies at home [in palliative care], the doctor knows what’s wrong so there is no problem getting a death certificate. It makes it so much easier for families.”
Palliative care isn’t merely support for someone at the end of their life; as Gerry’s personal experience reveals, it also provides support to the family and friends.
“How about the caregivers?” she points out. “They are often so involved 24/7 that they don’t even know there are services out there that can help them, they don’t even know where to go to find them.”
Palliative care is usually associated with very end-of-life, those final days or weeks, not months, but time can be extended by being at home. Gerry says it’s a completely different experience than being at home.
“You are away from your loved ones, and let’s face it, the hospital isn’t conducive to getting up to go outdoors, to do something for as long as you feel up to it. And it’s very stressful.”
Palliative care is not funded by the government. To pay for its operating costs, the Cumberland society must raise funds through donations and grants.
“The government now pays for medication; people at one point couldn’t afford the medication so they would go to the hospital where everything is paid for. Now there is a drug plan. There is a bed-borrowing program; now you don’t have to pay for a bed,” says Gerry. “Palliative care can be and is done at home but not as often as we want it. About 70 per cent will die in hospital, sometimes because there isn’t enough support.”
The Cumberland County Palliative Care Society one day hopes to open a unit to accomodate those for whom a home passing is not possible. A unit, which is meant to take in several people, creates a private world for everyone to be together without an audience.
“It’s patient-centered,” Gerry says about not having to adhere to the hospital’s schedule for meals or baths. “It shouldn’t be regimented. It’s a more relaxed space.”
Considering she started as a nurse’s aide at the age of 15, Gerry has devoted most of her life to caring for others yet she gives no indication she plans on retiring yet again. Palliative care is a calling for her.
“It’s amazing,” she says of her experiences. “Everyone is different in how they deal with their illness and their circumstances. I meet such great people. The dying teach you how to live.”
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| Gerry is pictured with the footstools she makes (out of 1 L milk cartons!) as a fundraiser for the Palliative Care Society of Cumberland County. |
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