The truth about dying in Vancouver
Providing proper care for our dying loved ones should be a right, rather than a privilege.
“In the U.S., there wouldn’t be anything,” the doctor told me.
“You wouldn’t have any home care support to help your mother with showering and personal care for an hour a day. You wouldn’t have a nurseline to call.”
“What happens if I get sick and there's nobody who can help me care for my dying mother after she's sent home?” I asked the doctors and nurses repeatedly. But I never got a clear answer. My mother had more than three months to live and there were no other options for her care.
As we prepared for my mother to go home from the hospital, I felt I was standing on a ledge with an abyss opening beneath my feet. It was like confronting a cold vast emptiness, while the hospital at least felt safe.
I'd lie down with my mother in her hospital bed and just hold her tight. With my arms around her, I felt I was keeping her back from the abyss with my strength, the only thing between her and the abyss. But I knew she would fall. I knew the abyss was yawning beside us, a cold wind blowing up from its depths.
My mother was one of 1,100 patients who are sent home to receive palliative home care in Metro Vancouver each year, according to Vancouver Coastal Health. The average dying patient in Vancouver is cared for at home by their families whether or not it is affordable or manageable. My mother's name was Eroca. She possessed a witty intellect seasoned with cynicism. A hardworking psychologist and a single mother, she loved farmer’s markets and opera. She was my best freind.
When my dying mother was sent home from the hospital, I received a list of medications, a list of Red Cross equipment to pick-up, a number to call and some brochures about private nurse services.
I was enlisted as a nurse without training.
It reminded me of being 4 years old in the messy dress-up corner at daycare. I'd wait patiently while my mother finished up another long day at the office. At day care, there was an over-sized nurse uniform and a plastic orange stethoscope and I diagnosed stuffed animals and pretended to have medical training.
As the doctors handed me prescriptions, brochures and lists, I couldn’t help but wonder whether someone would hand me a plastic orange stethoscope soon.
We left the hospital and the free fall into uncertainty began. We were told that my mother could return to emergency if she needed medical care.
When it came time to return to the ER, however, it was a dangerous process. My mother’s bones and lungs were full of tumours which made her vulnerable to vertigo and fractures. I positioned her body in the passenger seat of her car with pillows and blankets like a breakable object. Her deteriorating body could not sit upright for a long period of time in waiting rooms alongside patients with twisted ankles and surface wounds.
“Don’t dying people get any sort of preferential treatment?” I asked the receptionist behind the glass.
“She has to wait like everyone else,” explained the woman.
After pushing with loud words and losing my manners, a less robotic woman stepped in to assist me. She helped us to obtain a hospital bed, so that my mother could lie down and minimize her suffering as she waited in her stoic state of patience.
After realizing that the process of going to the ER was dangerous, I became determined to find a palliative care doctor who would come to my mother’s home.
In order to gain access to this doctor, I spent several weeks waiting on hold and going up the chain of command.
Once again, I raised my voice and lost my manners in order to access services. I later learned from nurses that this style of advocacy is the best way to get what you need. What happens to the patients and caregivers who are not privileged with an understanding of advocacy?
Living through my time as a caregiver, I was offered unexpected gifts of human kindness that are too beautiful for words and I learned about innovative solutions. I was also confronted by inhumane policies.
In upcoming stories, I'll write about innovative solutions and the people who inspired me to slow down and find the beauty in palliative care. I hope to share the stories of isolated people: disabled, aging or dying in Canada, and the invisible caregivers who accompany them through this process.
This could one day be your story, too.