In spite of all the services I described in earlier posts (here and here), the vast majority of caregiving hours in Ontario are provided by family members. These family caregivers face a wide range of situations, some finding the work highly stressful and others finding the work a pleasure.
At one extreme are those adult children who may visit an elderly parent once a week, perhaps helping with shopping or banking. At the other extreme are those caring for a disabled child or a spouse, where the caregiver lives in the same home as the patient, and where the ‘caring’ goes on all day long. Family caregivers report that these are the most stressful situations. In between is the ‘sandwich generation’, caring for elderly parents while still raising their own children.
I don’t want to dwell on our limited personal experience, so this is one of those posts where I relied on the literature. I found two reports particularly helpful – ‘A Profile of Family Caregivers in Ontario’ and ‘Family Caregiving: what are the consequences?’ Google them if you like. The basic point these reports make is that unpaid and largely invisible family caregivers make an enormous contribution to the health care system (3 million people annually in Ontario providing millions of visits to those in need). And yet this work goes largely unrecognized, and there are essentially no programs designed to help the family caregiver.
They go on to provide a detailed breakdown of who these caregivers are, and who they care for. Only 8% care for a spouse and only 5% for a child, at the intense end of the spectrum. At the less intense end (usually), a full 71% care for parents or other relatives. They also report on the challenges that these caregivers face. Commonly reported problems at the intense end of the spectrum include: feeling tired, anxious or worried, overwhelmed, angry or irritable, or having sleep problems.
Significantly, there are few complaints about the work being too hard, rather all these concerns are about psychological stress. And among this, “People who care for or help their partner or child are most likely to suffer from an elevated level of psychological distress”.
Putting my brief exploration of the literature up against our own experience makes me realize that the current PSW program in Ontario is actually a source of stress for many recipients of care. For us it’s the uncertainty of not knowing either when we will get help or whether we’ll get it at all. Some nights people just don’t show up; some nights we get a call saying they haven’t been able to find anyone to come.
My conclusion is that the small portion of family caregivers who support a spouse or child is the part of the system that is broken and needs investment of new staff. Usually it’s a specific part of the care that requires extra help (for example morning or evening care). Without the support of the public caregivers for the difficult part, the family caregiver is overwhelmed. It's the combination of publicaly-supported caregiving and family caregiving that makes it work.