Caregiver distress: A crisis grows
A conversation between Anna Greenberg, Interim President and CEO of Health Quality Ontario, and Craig Lindsay, an individual who has had significant experience as a caregiver. Anna and Craig discuss both the broader issue of caregiver distress and the very personal challenges that an individual caregiver can face.
Anna Greenberg: Three years ago, Health Quality Ontario released The Reality of Caring, a report that documented the increased percentage of unpaid caregivers (caring for home care clients) reporting stress and burnout. Since the release of that report, the situation has become worse - not better. The most recent data indicates 44% of home care clients with an informal/unpaid caregiver reported at least once that their caregiver was experiencing distress, anger or depression related to their role and/or were unable to continue their caregiving activities. This is a 21% increase in a 2-year period.
Craig Lindsay: From personal experience I can attest to this. My mother, Lois, lived alone for the last 16 years of her life. She needed some minimal support; someone to go to appointments with her, help with understanding her medications, general housekeeping, and keeping her home safe and accessible. I could do that, and my brothers helped too. As she aged her needs changed. Unfortunately, mine did too. My kidneys failed and I started dialysis three times a week. My ability to support her care, after she received the diagnosis of terminal lung cancer, was not what it should have been. For those last weeks I struggled to help her die comfortably at home. Juggling these responsibilities inevitably led to stress and I know I am by no means unique.
I would sleep at my mother’s house, waking up two or three times a night to the ringing of a bell that meant she needed to use the washroom. I would get up to help her, 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. I woke up exhausted and after arranging for private nursing during the day, would go home to look after things there and then have kidney dialysis in the afternoon. After that, I would return to my mother’s house to start the process all over again.
Anna Greenberg: What you describe is something we know so many informal caregivers - usually family members, friends or neighbours - experience. We know that 96% of home care clients who receive home care for long periods of time rely on informal caregivers, and they require more care compared to home care patients four years ago. They are also older, often living with dementia and have greater physical and cognitive impairments. While there are 23% more home care clients compared to three years ago, the number of visits by a paid home care provider has increased by 8%.
Craig Lindsay: I had worked in health care, as a flight paramedic, so I understood how to help my mother navigate the system for care. I knew her doctors and specialists, her health concerns, and what services she needed and how to access them. It is needlessly complex, and not very well-coordinated, but between the two of us we managed. Still, when my mother left the hospital for the last time, I 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, I didn’t get any information about how to keep my mother comfortable at home and was left to figure things out on my own. Toward the end, when I felt I was at my limit, I thought about driving my mother to the emergency department. I was resentful and angry that the system couldn’t spare the resources to let her die at home in comfort. After hanging on for a few days I called the nurse at the cancer clinic to arrange a move to a hospice, where my mother received excellent care until she died three days later.
Anna Greenberg: We often hear from caregivers how time-consuming and difficult it can be. On average, long-stay home care clients receive about 21 hours of care per week from caregivers who are family or friends. While rates of distress among these caregivers vary widely by region in the province, Ontario has the highest percentage of home care patients with distressed caregivers among all provinces, where comparable data are available.
Craig Lindsay: 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 the conflicting demands that I faced. After my mother died, I heard 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.
Anna Greenberg: A lot more awareness of these issues has been raised by caregivers themselves and by different organizations. Since 2015 on an annual basis, The Change Foundation has documented the growing challenges facing unpaid caregivers and the stories they have to tell from across the province. Health Quality Ontario’s annual assessment of the health care system – Measuring Up – reports statistics consistent with these narratives, and we have been working with partners to introduce a new routine survey in Ontario that would ask informal caregivers of home care clients about their experiences.
Craig Lindsay: I just hope my story can help others learn ways to make the system better for people who want to receive care at home, and for those who are caring for them.