Lyndon Blackbird, a 50-year-old business analyst, put his career on hold to provide round-the-clock care to his wife, who has early-onset Alzheimer’s.
Colleen MacDonald, 49, doesn’t know how she will manage when a Milton hospital discharges her 47-year-old husband, who is recovering from an ischemic stroke and cannot shower or dress without assistance.
Distress among unpaid caregivers who bear the heavy burden of looking after ill, elderly or disabled relatives has doubled in four years, according to Health Quality Ontario, the provincial adviser on quality of health care.
A report released Tuesday suggests these factors, along with Ontario’s aging population, may be creating a perfect storm for the provincial health system: a growing need for family caregivers at a time when distress is making them increasingly unable to do the job.
The proportion of family caregivers who had to stop looking after their loves ones due to stress more than doubled over four years ending in 2014, rising from roughly 7 per cent to 14 per cent, according to the report. The findings come from surveys conducted by community home-care workers who support patients and their families.
This increase in family caregiver burnout occurred as the population of patients needing at-home care in Ontario became older, more physically impaired and increasingly burdened by dementia.
The research raises a troubling question: What happens to patients and the health system if unpaid caregivers are unable to provide care?
“People need to understand how important caregivers are in our society writ large, and specifically in our health care system,” said Dr. Joshua Tepper, president and CEO of Health Quality Ontario. “These are people that basically across the province are involved day in and day out in the care of some of the sickest, oldest and most frail people.”
“We don’t expect distress to be zero, but what we do need to recognize is that it is increasing rapidly and we want to try to reverse it or at least slow this growth and bring it down.”
If distress rises further and caregivers increasingly step away from the role, their family members may have nowhere to go but long-term care homes and hospitals. Patients will suffer if they can no longer live in their own homes, “as most wish to do,” the report says, and “there could also be a substantial cost to the health system.”
The report notes that demographic and social changes make it likely that more caregivers will be needed, not fewer. The proportion of older people in the province is on the rise and Ontario’s long-term care homes don’t appear to have the capacity to absorb the growth of the senior population. And as families become smaller, so does the potential pool of caregivers.
Some strides have been made, the report acknowledges. The Ontario government has made home and community care a priority in its patient-first strategy for health system transformation and has recognized the importance of supporting caregivers as part of home and community care.
However, the authors stress that further study — better data and more precise measures — is needed to understand what may be contributing to the distress and what has changed in recent years that may have contributed to the increase.
- A panel of caregivers consulted for the report offered these suggestions:
- Better preparation and instruction for the responsibilities they are taking on;
- Better coordination of home care services;
- Clear information on what home care services are available;
- Consistent and reliable delivery of services;
- More respite services, such as adult day programs;
- More services for high-needs patients;
Colleen MacDonald, 49, and Dave Rajbansee, 47
Dave Rajbansee had a severe stroke six months ago that left him with extensive brain damage. Colleen MacDonald, his wife of five years, was shocked to learn two weeks ago that Milton District Hospital wants to send him home — imminently — even though she says he has limited verbal abilities, can’t dress by himself, bathe unassisted, or get into or out of bed without help. He walks with a quad cane.
Colleen feels strongly that Dave needs more rehabilitation in hospital, and she is panicked at the idea of her husband being sent home in his current condition. But she says the medical team managing his care, including an occupational therapist, believes that he is ready to make the move. (Paul McIvor, a spokesman for Halton Healthcare, which represents the Milton hospital, said he could not comment because he didn’t have the patient’s permission.)
Colleen works full-time and has only been offered two hours daily of publicly funded home care. She doesn’t believe Dave should be left alone. With her husband on long-term disability, Colleen can’t afford to reduce to part-time hours. All of this puts her in a tough spot.
“(Doctors) were expecting Dave to die,” she says, in tears. “Miraculously he didn’t, and against all odds he’s made a lot of gains. And all he needs is more rehab. Why can’t he get more rehab? That’s what I’d like to know.”
Lyndon Blackbird, 51, and Evelyn Davis, 54
Lyndon took a leave of absence from work last June to spend the summer with his wife, Evelyn, who was in the late stages of early-onset Alzheimer’s disease. He wanted to spend as much time with her as possible while she still recognized him, and he planned to use the time to begin the arduous process of applying for long-term care. With every ability Evelyn lost, Lyndon gained a new responsibility. He took over the cooking, shopping, cleaning and bill payments. He did all the research and paperwork necessary to manage her illness, while ignoring his own health. The stress caused panic attacks, and he had a seizure.
Lyndon continued to care for Evelyn full-time, with the help of home-care workers, throughout the fall. His employer, the Bank of Montreal, allowed him to work from home and take more time off as he began to plan her transition into a nursing home. She moved into long-term care just after Christmas 2015 and is now in palliative care. Lyndon continues to visit her every other day and remains actively involved in her care. He is now in his fourth year as a caregiver, and he knows it may be his last.
“It’s a difficult time. Four hours of being with her, and if I can get one smile . . . oh my god, what I yearn for now.”
Debbie Berry, 60, and James Berry, 80
When it was time for Debbie Berry’s father to be released from hospital after a knee operation last September, she thought he would be going into long-term care. Then she learned she was expected to take him home. Debbie was already working full-time to support herself and her adult son, who has schizophrenia. In addition to mobility challenges caused by the operation, her father has liver cancer and dementia, making him a high-needs patient.
The family’s publicly funded home care started at 35 hours per week, but the visits were spread throughout the day — a few hours in the morning, afternoon and evening — making it impossible for Debbie to work outside the home. Now home care has dwindled to 11 hours. Debbie has not been able to work since September and is on social assistance. At 60, she is beginning to have health challenges of her own, including arthritis in her knees and chronic pain. “I don’t think people understand what you give up and what you lose to do these things,” she says. “It changes your whole life.”
Author: Amy Dempsey