Monique Lanoix argues that family caregivers should be properly compensated, and better supported, by the government-funded health care system.
While caring for a close relative who was not doing well, I found myself getting quite stressed out. I was constantly at his side and the nurses involved in his care would say to me repeatedly: “take care of yourself so that you can be a better caregiver. You are not going to help Mark (a pseudonym) if you get sick.”
The health care professionals involved in Mark’s care were probably trying to get me to slow down. Highlighting the importance of my health in relation to Mark’s care was probably just a way for them to make their case more compelling. With this experience, however, I came to realize that family caregivers are first and foremost of instrumental value: to the care receivers, to those whose job it is to attend to patients with a chronic illness, and to the government-funded health care system (as family caregivers work quite hard for free).
The value of unpaid family caregiving and the negative health implications for family caregivers is well-documented in the latest Statistic Canada report on caregivers ‘Family caregiving: What are the Consequences?’ (here) The conclusions highlighted in this report will not be a surprise to anyone who has been involved directly in family caregiving. Family caregivers are stressed, depressed and in need of support. While some need more support than others, there are practically no family caregivers who are relaxed and worry free. Family caregivers feel more stress because they lack adequate support and often do not know where to find it, or finding it becomes a job in itself. As the report makes clear, family caregivers are workers who face serious risks (including health risks and poverty). Put simply, their prognosis is not good.
The Statistics Canada report is a crucial tool for understanding ‘who the family caregivers are’ and ‘who they provide care for’. Adequate supports for family caregivers cannot be put in place without a clear understanding of the population that is doing this work. The Canadian Caregiver Coalition has found the report useful for supporting family caregivers across the country. Its vision is of “a Canada that recognizes and respects the integral role of family caregivers” and “is advocating that the federal, provincial and territorial governments adopt a caregiver strategy” (here).
The Statistics Canada report also usefully highlights some of the troublesome assumptions about family caregiving. For example, it is usually taken for granted that parents can take care of their children with chronic health problems. But the report shows that the care required by some of these children is overwhelming and parents cannot cope alone. As for adults with chronic illnesses, the report makes it clear that the assistance they receive from family caregivers is crucial to their well-being. Often this allows them to stay in their homes and, significantly, this saves money on institutionalization. But the report documents the mental and physical challenges that family caregivers experience. In this way, family caregiving does not appear to benefit the family caregivers. Now let me qualify this. Most family caregivers enjoy helping a loved one. Certainly I did when I was the primary caregiver for my relative. However, I did not enjoy running around, arguing with governmental agencies, having to deal with home care, and constantly worrying that the care provided was not sufficient. The report shows I am not alone.
Family caregivers can no longer remain invisible: the aging population and the successes of medicine in controlling chronic illness make it imperative that all individuals, as they age, be perceived as individuals who will need some support from family (or friends). Family caregivers are organizing. There are, for example, the straightforward demands of the Regroupement des aidants naturels du Québec (RANQ) for respite care and the more complex demands for job flexibility (here).
The report concludes that family caregiving is an issue that will continue to be of interest to decision makers. Of interest? I certainly hope so, but this is not enough. This issue needs to be more than an agenda item at the bottom of a long list of ‘more pressing’ concerns. As anyone who has done family caregiving work knows, this is hard work; it can interfere with one’s paid employment and can consume all of one’s spare time.
It is time to move beyond reports and band-aid solutions. It is time to recognize family caregiving as a meaningful activity, and family caregivers as individuals who perform an important civic duty. Our governments need to recognize and assert the crucial importance of family caregiving and start proposing ways to compensate family caregivers, financially or through realistic paid leave options, and create real networks to support those who do this work.
Monique Lanoix is Assistant Professor of Public Ethics and Philosophy, Saint-Paul University, Ottawa, Canada.