It could be that death at home is a lot like a home birth – risky, unpredictable and subject to complications. Except, I suppose, that the challenge is saving the dignity of the old life rather than welcoming the new.
My brother and I weren’t strangers to home death. We had been caregivers for our father, who died of cancer when we were in our 20s. Still, I would have liked to be able to refer to a book I have yet to see in print that I imagined would be titled: The ABCs of Home Death.
My mother was 94 when she became bedridden in late 2006. She wasn't sick; she was simply wearing out. She had always been a tough bird, and had defied death twice before. The first time was on a four-day ocean camping trip when she was 83 and paddling along capably in her single kayak.
One morning, standing on the shore, she suddenly grabbed my arm and said she couldn’t feel anything on one side of her body. As she sat down on a log, she said, “I didn’t want to tell you, but this also happened last night in my tent.”
As I took my VHF radio to call for help, in her headstrong manner she admonished me: “I don’t need help – I’ll be fine.”
Running down the beach to be out of earshot, I made the call and within 10 minutes a Zodiac arrived with two paramedics aboard. My relief quickly vanished when Mum refused to go with them. We were a day’s paddle away from the car and I was grappling with what to do when I heard one of the paramedics say: “Ma’am, we got a call for help and if we return without our patient, we’ll be fired. We both have families who depend on us. Would you like us to lose our jobs?”
Mum thought a while and then acquiesced, whereupon she was whisked away at high speed in the building winds and waves to a waiting ambulance. During her week in hospital, she complained bitterly about her fate and blamed me, her daughter, for “putting me in here.”
Her second brush with death was three years later. I was doing biology work off the west coast of Vancouver Island when a floatplane landed to tell me that my mother had collapsed and been airlifted to hospital. When it came time to go home with a new pacemaker, she complained about the ferry ride back to her island. She wanted to be taken home by helicopter the way she had come so she could enjoy the view.
At the start of her decline, I had thought that this could be a peaceful time. We were, after all, in the most perfect place to die: the all-glass sunroom of her oceanfront home. Eagles landed in the Douglas fir trees just outside her window, the sun streamed in during the day and at night, the moonlight shone on her bed through the skylights. I would knit and we would talk of favourite times. She would show me photos of her early life in Germany and tell me stories of the war years. We might grow a little closer. We might even hold hands, and she might even tell me she loves me. But that was not to be.
When I told her doctor that she had chosen to die at home, he was skeptical and advised hospitalization. He wanted to test her heart, her kidneys, her blood. He prescribed a cocktail of pills, all encased in bubble packs. He wasn’t sure how the morphine would affect her mentally. Above all, he refused to say how long she might live. The theme of our home death was the unknown and all the anxieties that unknowns can bring.
My mother wasn’t frail. Her heart beat strongly and her mind was sharp until close to the end. At first, she was distressed: “Why is this happening to me?” Then angry: “Are you poisoning me?” When I sadly explained that her time was coming near and that her body was wearing out at last, she was defiant once more. “I want to live another hundred years,” she said with mouth firmly set.
Then she closed her eyes and shut us out. She refused to eat. She hid her medicine pack and announced that she had a right to do what she wanted with her pills. After weeks of decline, she suddenly awoke one morning, fiery as her old self. “Now I’d like my tea with milk, some toast with jam and a boiled egg,” she said.
One of the caregivers who relieved us for four hours a day whispered, “It’s not like the movies, Andrea.” And it wasn’t. My mother’s dying life revolved around her personal care, and our world extended from her bed to the commode. There were baths, bedsores, pills and a slate of hospice volunteers. There were calls in the night. There was little inclination for life pronouncements from any of us.
Things I had thought of all my life to tell my mother before she died went unsaid, which left me sad, disappointed and also ashamed that I had wanted something for myself from her death. Friends said to us, “You’re so noble to look after your dying parent.” But mostly we were too exhausted and confused to feel noble.
After four months, my mother died in her sleep at home, a week past her 95th birthday. In her adventurous life she had never given up at anything. She could always start a campfire in the rain and never complained under a leaky tarp. I had worried about what would happen when the ultimate thing she couldn’t fight against would take her. I needn’t have had any doubts. Just as she managed in her life, she had achieved her goal of being in charge, and for her the outcome was as close to perfect as a death can be.
Andrea Lawrence lives in Merritt, B.C.
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