Caregiver distress continues to increase.
The stresses within the health system not only have an impact on patients, but also on doctors, nurses and other health professionals, as well as on the family and friends who care for patients. Among clients who received home care for six months or longer, in the first half of 2017/18 more than 1 in 4 (26.1%) had a primary family or friend caregiver who experienced continued distress, anger or depression in relation to their caregiving role. That’s up from 20.8% in the first half of 2012/13. The increase represented 13,244 additional caregivers experiencing continued distress, anger or depression.
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When his mother Lois left the hospital with a diagnosis of terminal lung cancer, Craig scrambled to care for her at home in Scarborough in her final weeks of life, as he struggled with his own health problems and busy family life.
Read Craig & Lois's story
Craig and Lois’s story
Lois wanted to die at home. She had seen her husband die in hospital and didn’t want to go through the same experience. When she left the hospital after being diagnosed with terminal lung cancer at age 73, her son Craig became her main caregiver for the three weeks before she died.
A caregiver in distress
Craig, a former flight paramedic, had retired two years earlier after his poorly controlled diabetes and depression led to kidney failure that required dialysis at the hospital three times a week. He would sleep at his mother’s house in Scarborough, waking up two or three times a night to the ringing of a bell that meant Lois needed to go the washroom. Craig would get up to help his mother, reassure her, make sure she had all her medications, and check to see if she needed pain control or if the oxygen canister bedside the bed needed to be changed.
Waking up exhausted in the morning, Craig had arranged for private nursing during the day, which gave him time to go to his home to look after things there, and then go for his kidney dialysis in the afternoon. After that, he would return to his mother’s house to start the process all over again.
“It felt very hectic,” Craig says. “Looking back, I didn’t know how to ask for help or who to ask for help. I just didn’t feel I was doing a very good job of managing all of those conflicting demands.”
One evening, Lois had a fall in the washroom, and Craig wasn’t able to lift her up. He reluctantly called 911. “There’s a sense that you’re failing your parent as a child, that you’re not well enough to support them in this vulnerable time,” Craig says. He also worried about neglecting his wife and 10-yearold son, who were back at his home. “I was very interested in getting my mother support, but didn’t know or didn’t think to ask for supports for myself.”
Gaps in palliative care
When Lois left the hospital, Craig says he expected the health system would automatically arrange a support team for palliative care at home, including nursing care, psychological counselling, and home visits by a palliative care doctor. Instead, Craig didn’t get any information about how to keep his mother comfortable at home, leaving them to figure things out on their own.
“Whoever you ask, they should have a process in place that triggers people who can do something, people who have skills and knowledge to share,” Craig says. “I just don’t sense that at the time my mother died that palliative care had that sort of trigger.”
In her last weeks of life, Lois was very tired and slept a lot, Craig says, but was awake enough to have conversations. “I don’t think she really understood what was going on,” Craig says. “She kept saying, ‘I don’t want to die. I’m not ready to die. I think we need to try another course of treatment for my cancer.’ It was very frustrating. I think she understood that she was very sick, but I don’t know that anyone had the conversation with her that there is no cure.” Craig says there was a lack of psychological and social supports that should be part of a high-quality palliative care system.
Avoiding the emergency department
A few times, doctors ordered tests to be done in hospital, but since she had just weeks left to live, Craig knew they were pointless, and cancelled appointments to keep Lois out of the hospital. “My dad had died of cancer as well, but died in the hospital, which I think was why my mother so desperately wanted to get home,” Craig says. “The hospital doesn’t try to make it unpleasant by any intent. It’s just the nature of hospitals that they have a busy, loud, distracting and disturbing environment.”
Toward the end, when Craig was at his limit as a family caregiver, he thought about driving his mother to the emergency department, feeling resentful and angry that the system couldn’t spare the resources to let Lois die at home in comfort. In the end, he told himself to just hang on and get through it. A few days later, Craig called the nurse at the cancer clinic to arrange a move to a hospice, where he says Lois received excellent care until she died three days later.
Craig says the health system has likely improved since his mother died six years ago, but he thinks the palliative care system should have more communications to let patients and families know what’s available to support them. After his mother died, Craig would hear other people in different parts of the province talk about having a personal support worker care for their loved one eight hours a day, plus nursing care and physician home visits. “I remember thinking, I wish my mother had been in that postal code.”
Lois was a public-school teacher who taught kids who were having trouble reading. “I remember her always saying, ‘What was the lesson learned?’” Craig recalls. “The expectation was that life was a learning process.” Craig hopes that by sharing his story, others can learn ways to make the system better for people who want to receive palliative care at home, and for those who are caring for them.
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