Helen Ries was in her forties when her father died in 2011, and then her mother in 2014, a turn of events that left her as the main caregiver for her brother Paul Knoll, who has Down syndrome.
Ms. Ries moved her brother, who is now 50, into the Ottawa home she shares with her husband. Since then, she has supported her sibling through a depression that arose following their parents’ deaths. She has been there, too, through his cervical spinal surgery and numerous other medical crises.
Today, Ms. Ries manages 14 additional people to aid Mr. Knoll. Personal support workers help him get ready in the morning and assist him at bedtime, while other care providers fill his days with art classes, library visits and aquafit workouts. Although Ms. Ries must co-ordinate this small army of help – and pays for some of it out of pocket – she knows without it she wouldn’t manage.
When people suggest caregiving may simply be her “birthright,” she bristles. There wasn’t really another option: Given Mr. Knoll had spent his entire life in their local community, the family was unwilling to put him in a group home or long-term care – where spots are limited anyway, Ms. Ries said.
Even with the help, the caregiving role has come at considerable personal cost: little privacy remains in her home, or spontaneity in her days. There have been professional sacrifices, too. As full-time work became untenable, Ms. Ries left her 9 to 5 job evaluating government programs, taking on freelance consulting instead. In the past eight years, she’s seen little stable income and worries about her retirement savings. There are periods when she’s stopped working altogether, including during pandemic restrictions when care providers paused their visits and her brother suffered a mental health crisis.
“I really worked in building my professional life and I had to drop it,” said Ms. Ries, now 53. “There’s been a lot of work for me to try to come to terms with the reality that this is our life together.”
Ms. Ries is part of a growing cohort of Canadians caregiving for family or friends – a number set to increase further as the population ages and more people seek to age at home instead of in institutional settings. As it is, in 2018, one in four Canadians cared for family members or friends who were aging, had long-term health conditions, or physical or mental disabilities, according to the most recent data from Statistics Canada.
Canadians spend 5.7 billion unpaid hours each year on caregiving, with many of them struggling to balance the conflicting demands of care and paid work, according to The Canadian Centre for Caregiving Excellence (CCCE).
“This work takes huge skill, dedication, patience and physical strength. And yet we still look at this as low value work. It’s actually high value – morally, ethically, for the sake of our families, as well as highly economically valuable,” said Naomi Azrieli, chair and chief executive of the Azrieli Foundation, which launched the CCCE in May, 2022, to support uncompensated caregivers and paid care providers such as personal and developmental support workers.
Last November, the organization released a comprehensive, 93-page report that highlights a serious dearth of help available to those giving care, including inadequate and fragmented peer and mental health support, financial benefits, employment protections and leaves of absence. The report introduces practical policy solutions and calls for a national strategy on the issue – this as Canada faces severe health care staffing shortages, intensified by the pandemic.
“The system is broken and we rely on unpaid caregivers,” said Ms. Azrieli. “All of us either need care, will need care, give care or will give care at some point in our lives – everyone.”
There is now a growing understanding that informal, unpaid family caregivers and poorly paid care providers such as PSWs prop up Canadian health care: they put in three hours of care for every hour offered through the rest of the medical system, according to research cited in the CCCE report. And they are increasingly being relied upon as Canada moves toward home and community care, and away from overburdened institutional settings. Yet support for these carers is slim to non-existent, advocates say.
“Fundamentally, as a society, we are still not valuing care and people who need care – our elders or people with disabilities,” said Liv Mendelsohn, CCCE’s executive director.
“We have people who are caring out of love, out of relationships, out of interdependence, who are running on fumes. We don’t have a system to recognize them, to assess their health or mental health in any initial or ongoing way. Then we see the outcome; we see people in crisis.”
Some 69 per cent of family caregivers said their mental health deteriorated during the pandemic, according to 2021 research cited in CCCE’s report. To juggle their many responsibilities, caregivers often have to request time off or take leaves of absence – with some exiting the work force entirely. This scarcity of help for carers costs Canada some $1.3-billion in lost productivity annually, according to a National Institute on Ageing report. Others can’t afford to take leaves at all, with caregivers spending $5,800 a year on expenses, according to 2017 data referenced by the CCCE.
Time-use data from Statistics Canada shows that women bear the brunt of caregiving hours, taking on more of the daily, time-consuming tasks than men. For many women looking after elders, caregiving duties arrive at a crucial period for career advancement, Ms. Mendelsohn said.
“We know this disproportionately affects women. We take time out of our career during our peak earning years to care for parents and children. We’re told to be ‘resilient.’ The system, as it exists, is not set up to help people be resilient.”
While employers may accept limited, one-time leaves such as parental leave, caregiving tends to be more episodic. For those caring for family and friends with disabilities or mental health issues, it can be a lifelong commitment.
“People are made to feel like it’s not okay to bring up their caregiving needs at work. That’s seen as your ‘personal life,’” Ms. Mendelsohn said. “That is a very old-school mentality that persists. From a feminist lens, that is still something we haven’t sorted out with the rise and prominence of women in the work force. It’s part of that double, now triple shift that we’re expected to do.”
At 45, Katrina Prescott already has a lifetime of caregiving behind her. She began at age 7, when she’d help her grandmother care for her grandfather, who was going blind.
In her thirties, she gave up her life in New York, where she worked as a producer on television commercials, to return to Vancouver to help her mother care for her ailing grandmother, who spent the final six months of her life in hospital and a nursing home.
During that time, Ms. Prescott was with her grandmother constantly, ferrying in food, encouraging her to eat and move her body, talking and reading to her, tidying her room and advocating on her behalf, including for more regular changes of her grandmother’s briefs after she suffered a severe urinary tract infection. When her grandmother died in March, 2013, it was in a quiet room with a view – a room Ms. Prescott pushed to secure.
Throughout this period, she stopped working, rented out her apartment and couch surfed with friends to make ends meet. It was an intense, exhausting time that left a heavy psychological mark months afterward.
“You don’t know what’s coming and no one can prepare you,” Ms. Prescott said.
Not long after her grandmother died, her mother began showing signs of dementia: she stopped reading and driving, her fridge brimming with rotten food. Ms. Prescott was on holiday when her mother called her in a state of distress, having forgotten how to use the microwave. “I knew this was it, this was my last trip, my last hurrah,” Ms. Prescott said.
The prospect of caregiving again was daunting: she was only in her thirties, her career accelerating. And yet, adamant not to place her energetic, 65-year-old mother into long-term care, in early 2016 Ms. Prescott moved her into her own suite in the same apartment building where she lived. After her mom twice went missing for long periods, she installed a motion-sensor camera and alarm. Ms. Prescott said she slept less than three hours a night during this time.
“Women, mainly, are the ones that are backed into this corner,” she said. “It’s the constant mental strategy work that is so exhausting. You can never stop putting the puzzle together because every day and night is a new puzzle.”
The family eventually secured 37 hours a week of subsidized help from personal support workers, but that still left many unattended hours. Ms. Prescott came up with an extreme solution: since her mother loved being in the car, the two would spend eight hours a day on the road together. She made and took work calls, sometimes picking up clients and doing meetings in the car. She worked mostly with friends during this phase, turning down more lucrative contracts and travel jobs. To keep her career afloat, she was forced to hire additional, privately contracted PSWs, paying for this help out of pocket.
In 2019, after her mother fell, broke her hip and became bedridden, she worked from her mom’s bedside, or while taking her on outdoor trips with a wheelchair.
By the time Ms. Prescott’s mother died last April, the caregiving experiences punctuating her life left her eager to see an overhaul. Dismayed by what she views as a patronizing and dismissive attitude toward family caregivers still persisting in health care, Ms. Prescott wants more recognition for these informal carers.
Today, she works as a caregiving consultant, focusing especially on advocacy for people who have loved ones with dementia. Ms. Prescott recently produced a web series on compassionate communication within such families. She is pushing for more peer support groups, forums and informational hubs for caregivers to connect and learn from one another. And she is calling for higher wages, better training and more recognition for paid care providers.
There are small, tentative signs of progress for family caregivers struggling with loss of income. Nova Scotia’s Caregiver Benefit Program offers $400 a month to those who put in 20 or more hours a week helping adults in need of care. New Brunswick provides $106.25 a month to informal caregivers helping seniors or people with disabilities. And a collaboration between the non-profit organization Caregivers Alberta, jobs platform MatchWork and the University of Alberta helps caregivers find flexible work they can balance with responsibilities at home. Still, Canada lags behind countries such as the United Kingdom, which provides a weekly “carer’s allowance” to low income caregivers, paid directly into their bank accounts.
On the mental health front, there are a number of provincial caregiving associations, help lines and peer mentorship initiatives across the country – though many are small, underfunded grassroots efforts that aren’t always easy to find, advocates say. Staff from many of these associations are on the CCCE’s advisory board, as are researchers and caregivers and care providers themselves.
“We have the people and we know what the solutions are. It’s a matter of will,” said CCCE’s Ms. Mendelsohn, pointing to the need for a federal government strategy to support carers.
The organization’s staff have met with senators and cabinet ministers responsible for health, seniors, accessibility and disability; with MPs, MPPs and MLAs from all parties. “This is something that demands attention and is not a partisan issue,” Ms. Mendelsohn said.
From Ottawa, Ms. Ries is helping sibling caregivers with her non-profit organization Siblings Canada, which arranges meetups, peer mentoring and e-learning on topics including mental health and financial security for sick or disabled family members. (Last March, the organization merged with CCCE.)
Ms. Ries hopes policy-makers and employers will step up to help a growing number of Canadians facing the “dramatic nature” of caregiving.
“It’s understanding the mental health effects of becoming a caregiver, how much you lose of yourself and what you’ve worked for,” she said. “How the path you had for yourself gets derailed, and how much work it takes to accept this new place in your life – in a way that’s healthy and productive for you.”