I, Caregiver: A personal perspective on family caregiving
Opinions expressed in this blog post are those of the author and do not necessarily reflect the views of the Michael Smith Foundation for Health Research.
By Carol A. Mallette
The recent issue of Spark entitled “Age in Place” discussed the question of what makes a community a good place to grow old.
MSFHR Scholars Joanie Sims-Gould and Heather McKay provided encouraging, optimistic perspectives with respect to how applied research can serve as a tool for social change and development. To complement their work, I will ask the question: What makes a country a good place to grow old?
I bring a unique perspective to this issue – I am a researcher with expertise in women’s health, and since 2008 I have been doing the heavy lifting of caring for my best friend of 50 years. He has a progressive, undiagnosed neurological disorder, broadly described in the Parkinson’s range: a condition that has robbed him of physical prowess, his mobility, speech, and personal dignity. Each evening, as I say good night, I struggle to fight back the tears.
Initially I was filled by the wonder and noblesse oblige of caregiving. Caregivers have many kinds of tears to share: tears of love, tears of fear, fatigue and hopelessness, and ever rarely, tears of joy. Overall, family caregiving is a tough, existential journey.
For decades, family caregivers in Canada have been a neglected, forgotten population. Every year, family caregivers perform Herculean tasks to enable friends and family members to live at home longer, under humane circumstances. Many of us feel conflicted as we work out of both love and necessity. Increasingly the burden of care is escalating as our population ages.
A day in the life
The daily existence of family caregivers is filled with powerful contradictions: courage and fear, hope and despair, love and anger. Family caregiving is unquestionably one of life’s most difficult treks. Two of the most difficult challenges are managing uncertainty along with spiraling out-of-pocket expenses for medications, mobility appliances and medical aids.
So what does the family caregiver portrait look like? What is a typical job description?
- Prepare 1,095 nutritious and hot meals a year, shop and carry groceries, do dishes, clean, run the household, buy clothing, and medications.
- Be on duty 24 hours a day, 7 days a week -- respond to calls for assistance every 20 minutes, , get up/wake up several times each night, 365 days a year.
- Assist with bathroom wheelchair transfers, daily toileting, feeding, personal bathing and dressing.
- Wash and iron clothes, change bedding, sort, recycle, and take out 4 bins of garbage each week.
- Undertake gardening, lawn mowing, weeding, all interior and exterior home maintenance; supervise repairs and wheel chair access renovations.
- Be the dedicated chauffeur, arrange medical appointments for physiotherapists, kinesiologists, hospital tests, scans, dental cleanings etc.
- Arrange for medical appliances e.g. bath benches etc. Lift, load, fold and carry wheel chairs, walkers, etc. in and out of the vehicle/taxi.
- Personal communications. Complete and submit extended health and dental insurance claim forms and perform other duties as required.
Family caregiving is also often labeled “women’s work.” And, as many women know, “unrecognized work remains unrecognized.” In fairness, however, I believe caregiving today has evolved, perhaps out of necessity, to become more gender neutral. Although gender may influence the kinds of tasks performed by women and men, respectively, compared to even 20 years ago both genders provide substantial family caregiving support to their loved ones.
"Neither recognized nor rewarded"
Is it conceivable that family caregiving could ever become recognized and subsidized as paid work, as it is in some European countries?
Currently, under the federal government temporary foreign worker program, it can cost a family approximately $50,000+ annually to pay a caregiver’s salary ($18.00 per hour), vacation pay, EI, CPP benefits, in addition to mandatory free room and board. Foreign workers also earn $27.00 for overtime hours beyond the 40-hour week and 2.5 times their hourly salary for statutory holidays. For a family caregiver, however, who works 16+ hours a day (e.g., a 112-hour week, 7 days a week, conservatively speaking) this would be equivalent to earning a gross salary of more than $125,000 per year.
In effect, the work of family caregivers is neither recognized nor rewarded and consequently the annual salary is zero. Furthermore, I estimate that few families have the capacity to access federal and provincial caregiver tax credits, which are means tested and not available when the “dependent” care recipient files a tax return over $22,436. Frankly speaking, working selflessly out of love is not always enough to put bread on the table.
The BC Family Caregiver’s Association reports that more than 1 million family caregivers (nearly one in four British Columbians) provide unpaid care to friends and loved ones – those suffering from chronic disease, mental health issues, age‐related problems and disabilities. No doubt family caregivers are saving Canadian taxpayers millions of dollars by keeping sick and frail family members at home and out of hospital or institutional care. However, we seldom ask what it means to our economy to have 25 percent of the population providing family caregiving?
No one to my knowledge has yet calculated or modeled the cumulative costs and consequences of family caregiving on national productivity or the economy. Many caregivers have had little or no choice but to leave or scale down careers and livelihoods. Without an evidence-informed caregiving policy, the present generation of elderly and frail family caregivers has few, if any, options but to continue to provide the lion’s share of care.
A personal cost
On the positive side, we, as family caregivers, enable a generation of frail and disabled family members and friends to live healthier and much happier lives. Altruistically speaking, as family caregivers we know this should be sufficient reward in and of itself. But is it?
This sacrifice of course comes with a personal cost as it eventually impacts the health and well-being of caregivers themselves. For many, the incarceration of loved ones into long-term care facilities and institutions is unthinkable. With the rising costs of family caregiving in the 21st century, and the forthcoming legalization of assisted suicide, this begs the question, what will things be like for the next generation?
Family caregiving should always be an option, not a mandatory expectation that is off-loaded onto families by society. The time has come to make critical changes in both evidence-informed policy and practice.
If we don’t make proactive, strategic investments in family caregiving, will families be ready for the inevitable challenges that lie ahead? It’s time to raise the volume and speak out on the need for a family caregiving renaissance in Canada. As Louis Pasteur once said, “chance favours the prepared mind.”
Carol A. Mallette is the author’s personal pen name and is used to protect the confidentiality of her family. In addition to being a full-time family caregiver, she is a researcher with expertise in women’s health.