Policy Options by Donna Thomson and Vickie Cammack 29 May 2017
The planet has a temperature, and it’s not just because of climate change. The unpredictability of the future is making us sick with worry. But in the meantime, we can always count on the love and care of family. . .can’t we?
Not necessarily. Millennials might be surprised to learn they will spend more time and money looking after their parents than they will in caring for their own children. An aging population and smaller families together with reduced health and social care budgets make it clear that this is not dystopian fiction.
Caring for someone takes a physical toll over time and creates unanticipated financial pressures. In the near future, these challenges will be exacerbated by the growing numbers of people living with demanding health conditions such as dementia with fewer and fewer people to take care of them. The natural web of caring that so many of us take for granted is at risk of unravelling. What is needed is a robust social movement that values the deeply personal and broad societal benefits of caring for one another without hiding the difficulties.
In economic terms, natural care — the care provided by family and friends — is a resource worth $25 billion a year in Canada. But its value in terms of our emotional sustenance, practical support and individual resilience is incalculable. How do we draw upon this resource that is so critical to our well-being without depleting it?
The hidden experience
Over our lifetime, 80 percent of the care we need is freely given, offered by families, friends and neighbours. Yet its central role in shaping our lives is absent from our day-to-day conversation. We don’t have words to describe care because often we don’t notice it.
Everyday caring is hard to talk about. With limited vocabulary, we try to reflect the value, meaning and struggle of our caring without casting ourselves as heroes or martyrs. Each of us is completely dependent on others at various points in our lives. At odds with that practical reality is our society’s reverence for the ethic of personal independence, making vulnerability, dependence and physical decline uncomfortable subjects outside of home and family. That’s a lesson that caregivers and their loved ones learn the hard way, and it is one of the reasons isolation is so often a part of the private caring experience. In a world of oversharing on social media, caregiving is still a taboo subject.
At the same time, the public experiences of care in our society have been professionalized and reduced to service interactions. Care is provided in tightly controlled units; caseloads and service plans dominate our social care systems. Family and friends labelled “caregivers” on a file are often noted as a detail of patients’ history, rather than as integral members of the care team. It should come as no surprise, then, that natural care with its engine of love has little value in these systems powered by money.
The irony is that the financial sustainability of our formal care systems is completely dependent upon the freely given care of family, friends and neighbours. After a person leaves the doctor’s office or hospital with a prescription in hand, it is the practical support of family and friends that enables healing. Family caregivers are firmly embedded with professionals in the circle of care. But often the only people who recognize that reality are the caregivers themselves.
The burden of care can be overwhelming. Sometimes even professional care providers working together with loving family members are not enough. The demands of dementia and age-related care make it almost impossible to hold down a full-time job while keeping a frail elder safe and secure. And career disruption is costly. Family caregivers over the age of 50 who leave the workforce lose, on average, more than $300,000 in wages and benefits over their lifetimes. While some progressive employers have developed caregiver benefit programs, the vast majority of employers struggle to accommodate the flexible hours and reduced workload that some workers need. Families who can afford it engage home support staff to bridge the gap, making care work one of the fastest-growing sectors in our economy.
The call to care
Caring for those we love gives us pleasure and even health benefits. We know, for example, that grandparents who care part-time for grandchildren live longer, healthier lives. A study following elderly female caregivers over eight years determined that, even though they were more stressed, they scored higher on memory and physical performance tests than those in the noncaregiving control group.
So caring is good for us, but only to a point. That’s the rub: too much caregiving is toxic. Elderly spousal caregivers who report high levels of caring-related stress have a 63 percent higher mortality rate than noncaregivers of the same age.
Threats to our caring capacity
The warning signs of caring burnout are all around us. Our consumerand achievement-oriented society has no place for public discussions of frailty or mortality. Consequently, care has been transformed into a commodity, severed from the public good. It is increasingly being perceived as a service to be paid for rather than a natural human exchange. And even the care work that is purchased is routinely undervalued and poorly paid.
At the same time, freely given care is overstretched by complex health demands and government cutbacks. More and more care is being downloaded to families. Caregivers are routinely expected to add medical and nursing responsibilities such as wound care or running intravenous lines and catheters to the demands of meal preparation, shopping and financial management.
Perhaps the most graphic evidence of the unsustainability of downloading and devaluing natural care is the increasing number of families abandoning elderly or disabled relatives in the emergency rooms of local hospitals. In 2016, the Ombudsman of Ontario released Nowhere to Turn, a report that reviewed more than 1,400 complaints and highlighted egregious cases of adults with developmental disabilities in crisis situations, including many who were abandoned, abused, unnecessarily hospitalized or jailed. A study published in 2014 examining elderly “bed blockers” in hospitals includes this reflection: “When the reason for admission to hospital is considered, most of the patients in this study were admitted with a medical illness, or because the patient and/or family could no longer manage in the community.”
Of course, no one simply drops off a loved one without a great deal of worry, guilt and regret. The truth is that we want to care for one another, and our survival depends on it. The challenge is in how we respond to the increasing needs of our loved ones without draining our own personal resources.
Caring as a social movement
The social movement to support and value caring has begun. One of its founders is Ai-jen Poo, winner of a MacArthur “genius grant” and co-director of the American advocacy group Caring Across Generations. She’s building an alliance between domestic workers and families in order to raise the status of all care work, paid and unpaid. Organizations such as Carers International are elevating the message of caregiver recognition (an important first step) to one of “caregiver pride.” Health care providers are beginning to use assessment tools to determine caregivers’ health and the degree of stress they are under (key to helping us care together), and governments in the UK and Australia are stepping up with exemplary allowance programs for caregivers.
Now it is time to hunker down for the slowest and deepest part of social change: shifting the cultural zeitgeist. For natural care in families to be made visible, a new, public narrative will be required, one that captures its burden and sacrifice as well as its riches of wisdom and intimacy. We need to move toward what the care ethicist Joan Tronto calls “caring democracy.” As she notes, caring has moral and political dimensions. If we place care — instead of the economy — behind the wheel of society, everything changes.
Care security is as critical to our survival as energy or food security. It is a universal need, and it is at the heart of income equality and good health care. The time is ripe for igniting a social movement for natural care. Sharing, creating and advocating across the political divide are the proven remedy to heal our aching hearts and actively influence practices and policies, so that they support and sustain our capacity to care for one another naturally.
Donna Thomson advises governments and health researchers on policies relating to family caregiving, disability and aging. She is the author of The Four Walls of My Freedom: Lessons I’ve Learned From a Life of Caregiving (2014). She blogs regularly at the Caregivers’ Living Room and for Caring Connections at Troy Media. Vickie Cammack is a social innovator who has established many groundbreaking organizations dedicated to strengthening community and addressing isolation including Tyze Personal Networks, Planned Lifetime Advocacy Network, and the Family Support Institute of British Columbia. She is a member of the Order of Canada.