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With a looming aging crisis, the costs of caregiving run deep
Elder care leaves families stressed, exhausted and looking for help, a challenge particularly felt by women. A patchwork of hospital programs, government supports and online communities shows a way forward

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Saturday, April 13, 2019 – Page A11

For 16 hours a day, Sherri Ferguson races.

At the North Vancouver, B.C., home she shares with her ailing, elderly parents and teenage son, Ms. Ferguson begins her work day at the computer at 6 a.m. She walks the dog, returning by 8 a.m. to deliver coffee to her 77-yearold father, who has chronic pain, and her 76-yearold mother, who is diabetic and in the early stage of Alzheimer's. The daughter checks her mom's blood sugar, gives her medications and transfers her to a wheelchair for breakfast.

By 9 a.m., Ms. Ferguson drives her son, who was recently diagnosed with schizoaffective disorder, to school. She then heads to work at Simon Fraser University, where she is director of the environmental medicine and physiology unit. The homecare workers Ms. Ferguson has arranged come midday and make lunch for her parents. After work, she cooks the family a healthy dinner, walks the dog again, dresses her mother for bed, records her blood sugar and gives her insulin. And then, the finish line: cleaning up and laundry duty.

Ms. Ferguson is part of a vast army of Canadians who feel stretched thin looking after their elderly relatives while juggling the demands of daily life. "I feel very stressed to meet my own expectations of how well I care for them," said Ms. Ferguson, 50.

Nearly half the population has cared for an aging, ill or disabled family member or friend at some point, according to the latest data from Statistics Canada. Informal caregivers contributed $26-billion in free labour to the health-care system annually, a 2009 study found. More than half of Canadian carers nursed a loved one for more than four years and many of them faced substantial outof-pocket expenses while struggling in their careers: 43 per cent missed work, 15 per cent cut down their hours and 10 per cent passed up a promotion or new job, according to Statistics Canada. Women particularly face this challenge, since more of the daily tasks of giving care still fall to them.

they love as they age, talking to others who know what they're going through becomes invaluable.

Peer support for carers is increasing in this country, with an organization called Caregivers Nova Scotia paving the way. With 6,500 members, the provincially funded non-profit is staffed entirely by people who have cared for family or friends themselves. The paid employees offer 25 in-person peer support groups a month in Nova Scotia, as well as one-on-one phone counselling.

"The first time a caregiver calls us, they're often in crisis," executive director Angus Campbell said.

"They don't know where to go and they feel alone."

Mr. Campbell said doctors in Nova Scotia are increasingly doing "social prescribing," referring frayed carers to the peer support group for the sake of their well-being. Starting last fall, the organization launched eight caregiver retreats across the province, with funding from the federal government. The one-day retreats combine educational workshops, peer networking and self-care: art classes, massages, manicures and foot soaks - pleasures that caregivers abandon when they're in the thick of nursing others.

"They were 'take me away' moments - they had the day off," Mr. Campbell said. "People learn that they're not alone."

Peer support for caregivers is also germinating online. The social-networking platform Huddol lets carers and professionals exchange social support and advice. Launched in late 2017 with private-sector support and money from the federal government and APPUI, a Quebec funding initiative for caregivers, Huddol now counts approximately 12,000 members.

"You can come to the network, ask for help and the network will rally around you," Mr. Stolow said.

BEYOND RECOGNITION The innovative programs sprouting up all over the country go further than simply lauding caregivers for their quiet sacrifices: they point to an evolution from patient-centred health care to family and community-centred care. Experts say that fully integrating carers this way into medicine is critical.

"We've been talking too long about caregiver recognition," Mr. Stolow said. "We have to start getting more practical."

To that end, Quebec has appointed Marguerite Blais as its first cabinet minister responsible for elders and caregivers. Ms. Blais is now drafting the province's first policy to ease the burden on caregivers. In consultations this past December, she heard from 200 carers and experts who made their priorities clear: more respite homes, more psychological and social support and more financial aid that mirrors Canada's parental leave plans.

"We take the caregiver for granted," said Ms.

Blais, who looked after her husband before he died of cancer in 2015.

Quebec is set to publish a caregiver policy at the end of 2019, with a strategic plan slated for release in spring of 2020. The province will also launch a "caregiver observatory" this spring to collect stronger data on this growing cohort. Quebec's efforts build on Manitoba's 2011 "Caregiver Recognition Act," which acknowledges carers' contributions to society but doesn't create legally enforceable obligations.

"This is so important for so many people," Ms.

Blais said. "Our population is aging, and in Quebec, it's going very quickly."

THE NEXT FRONTIER OF ELDER CARE: MEN On paper, it would appear that Canada is inching toward gender parity among caregivers: 54 per cent women and 46 per cent men identify as carers, according to the most recent data from Statistics Canada. But a closer look reveals a wider disparity between the sexes.

The proportion of women who cared for an adult family member or friend on any given day was three times that of men in 2015, according to Statistics Canada. Female caregivers take on significantly more of the daily, time-consuming tasks than male caregivers do, and were more than twice as likely as men to provide personal care, according to the agency's 2018 report on women and men's time use in this country. While men tend to take on episodic work, including outdoor maintenance and managing finances, women are more often saddled with tasks that can't wait - the bathing, bandaging, medicating, feeding, housecleaning and transportation to medical appointments.

Not well captured by any time-use study is the invisible work female caregivers do all the time: the worried multitasking, the daily check-ins with elderly parents to offer moral support, the nonstop planning for every worst-case scenario.

"The cost and consequences of caring for an aging family member are high, and higher for women than they are for men, and higher still if there are no workplace, community or family supports to assist them," said Nora Spinks, chief executive at The Vanier Institute of the Family in Ottawa.

For 15 years, Kory McGrath has been looking after her 88-year-old grandmother, who has Parkinson's disease, while parenting four young children and working full-time as a registered midwife in Bowmanville, Ont. Today, Ms. McGrath, 44, arranges weekly dinners, and helms all of her grandmother's shopping, banking and medical appointments - taking charge of everything as the eldest sibling in the family.

While she finds the experience "personally rewarding," Ms. McGrath and other female caregivers say the problem with women's elder care is that it is ultimately a problem of unpaid work that persists throughout women's lives, from child care to household chores to emotional labour to end-oflife care. "There's definitely that unpaid resentment," Ms. McGrath said. "You have days when you begrudge it but it's always fallen on my shoulders."

There remains a deeply ingrained societal belief that caring is women's work, with elderly parents often foisting these expectations on their daughters: more than a third of female caregivers reported that the ailing people they care for are unwilling to accept help from anyone else, according to the Change Foundation's 2018 report. On top of that expectation, family members - women chief among them - are often reluctant to self-identify as "caregivers": this is just what you do for the people you love. In failing to acknowledge their own hard work, these carers remain socially and economically undervalued.

We need a broader discussion about these gendered roles because they create a disincentive for men from stepping up to provide care, experts argue. Huddol's Mr. Stolow said it's time to consider how we can help men become more comfortable about being vulnerable - which is what you are when you nurse people. "Caregiving can be very intimate, very close," he said.

Caregivers Nova Scotia's Mr. Campbell said more men are starting to call their helpline and more couples are attending the support groups together - versus just women solo. "We are seeing more men step up to the plate," he said.

Mr. Campbell was a caregiver to his late partner after he became a parapalegic. "I did it all, and I don't come from a health-care background - I'm an IT guy," he said. "But now I can do catheters, I can give injections and I change a mean adult diaper. I had to learn how to do that."

Even in a future that sees women and men take on this dire work more evenly, experts warn that informal family caregivers will need more help from the outside world as they harbour their elders in the coming years.

"This is a reality and it's not going to go away.

We can either embrace it and strategize around it, or we can try to ignore it and hope it's going to go away," Ms. Spinks said. "We will all be caregivers and care receivers at some point in time. We need to figure out how to do this well."

Seniors are projected to make up a quarter of the population by 2036. As health advances allow those with chronic illnesses to live longer, respite care remains costly and inconsistent and more patients prefer aging at home, the burden placed on family caregivers will only increase in this country.

"Despite little to no training, they are expected to provide medical and nursing care in the home, navigate complicated health and long-term care systems, and serve as substitute decision makers," Mount Sinai Hospital geriatrician Nathan Stall wrote in an editorial published last month in the Canadian Medical Association Journal that called for more robust health, workplace and financial aid for family carers. "We must and can do more to acknowledge and support informal caregivers in bearing this burden."

As the country faces a looming aging crisis, governments have begun to signal that family carers are a priority. In Quebec, Marguerite Blais is the first cabinet minister with the core mandate to lighten the load placed on caregivers, with a provincial strategy now in the works to offer carers more recognition, support and respite care. Momentum is also building in health care: a growing movement toward caregiver-friendly approaches is seeing new training rolled out nationally for hospital staff, doctors, nurses and pharmacists on how to more compassionately engage with and help caregivers whose family members are sick. Coast to coast, new organizations and online communities are springing up to teach Canadians how to navigate the daily responsibilities involved in elder care, while peerto-peer helplines, social-media platforms and support groups are providing comfort to caregivers dealing with stress and burnout.

While experts say a national strategy is needed, these fledgling programs offer a blueprint for the way forward, bringing family caregivers to the foreground in medicine while keeping them healthy themselves.

"This is the business of loving and caring for someone - and not remuneratively," said Janet Beed, an independent health-care consultant who prepared a 2017 report on strengthening caregiver support in Ontario. "How do you do this? It's hit us and we need to figure out how to tackle it."

PARTNERS IN CARE Cathy Proll felt so strongly about having her elderly parents closer that she sold her family's home and bought a new house in Brantford, Ont., retrofitted with an in-law apartment. Today, Ms. Proll, her husband and their two children share the space with her father, who is 84 and has depression, and her 82-year-old mother, who is experiencing memory loss and has had several bad falls.

Some of the family's encounters with the health-care system have left Ms. Proll dispirited.

"The advocacy that goes into this is the most exhausting," said Ms. Proll, a 59-year-old chief executive at a non-profit organization.

The most panicked night came when Ms. Proll's mother - who suffers from hearing loss and confusion caused by pain medication - mistakenly believed she was being moved out of a hospital to a nursing home because no one had involved Ms.

Proll in an earlier conversation with staff.

"The system is not set up to support a healthcare provider, a doctor, a nurse or anyone to interact or spend time with the caregiver. It's not what they're measured on, or allotted time for," said Christa Haanstra, executive lead in strategic communications at the Change Foundation, an independent health-care think tank.

To address this, the Foundation is working to instill a more caregiver-friendly approach throughout various health-care facilities in Toronto, London, Cornwall and the counties of Huron and Perth in Ontario. Four partnerships will each receive grants up to $750,000 annually between 2017 and 2020 from the foundation, which operates thanks to an endowment from the Ontario Hospital Association.

Doctors, nurses and other providers involved in the program are trained on how to more thoroughly engage with their patients' caregivers. Formal visiting hours are being eliminated and discharge planning is being improved. Carers wear identification badges and get binders that detail their loved ones' medical histories, material they can ferry to various appointments so they don't have to remember all the details themselves.

Pat Langlois felt isolated and overlooked as primary caregiver to her husband George Langlois, 82, after he had a stroke 12 years ago.

"Who was I going to talk to? There was nobody.

So you keep it within yourself," Ms. Langlois, 80, said from Clinton, Ont.

Today, she takes advantage of the Change Foundation's programs for carers in Huron County: She wears the lanyard, keeps a binder with her husband's medical records and attends a support group at her local library.

"It's a big relief," Ms. Langlois said. "I was never recognized before ... . Nobody ever said to me, 'Hi, Pat, how are you?' I have a friend now that phones me up and asks this. The first time she said that to me, I cried."

Another new project rolled out nationally last month aims to make pharmacies more caregiverfriendly, with voluntary online training for pharmacists. Launched as a six-month pilot project last June in Quebec, the program was spearheaded by Huddol, a Montreal-based online support network for carers, and pharmaceutical company Teva Canada, which funded the initiative.

"One of the things that we learned from talking to caregivers and pharmacists is that ... the relationship was non-existent," said Mark Stolow, Huddol's founder and chief executive.

Pharmacists who take the accredited training will get a handbook to give to caregivers that includes a checklist to bring to a pharmacy; a glossary of terms used by health-care providers; a caregiver self-assessment tool for stress and links to provincial support organizations and federal benefits.

Mr. Stolow sees the project as part of a gradual shift in health care away from treating caregivers as resources to valuing them as partners to be invited "into the middle of the care circle."

NAVIGATING THE WATERS Ottawa's Rhonda Cunning lives with and takes care of her ailing 78-year-old mother, who had a stroke eight years ago, and is losing mobility. With a demanding 45-hour work week as a postproduction manager and two children to look after, Ms. Cunning hired some home support, though she races back when there's an emergency.

"We're doing what we can to make it work but it doesn't really work," said Ms. Cunning, 46.

Ms. Cunning feels the responsibility resting entirely on her shoulders: her brother lives in a different city and her husband frequently travels for work. When she's really at a loss, she crowdsources intel from girlfriends who are also nursing elderly parents. "People need help navigating the system," Ms. Cunning said.

Canada's health, home and community care systems "remain organizationally fragmented, making them difficult to access," according to a 2018 report from the National Institute on Ageing at Ryerson University. A common complaint of overextended carers is that they don't know where to look for help because it's not aggregated in one, easy-to-use place.

"The information might be there but you have no way of knowing where to find it. You're stymied, frustrated and overwhelmed," said Ms. Beed, who is board chair at the Ontario Caregiver Organization.

Launched last year, the provincially funded, notfor-profit initiative pulls together a multitude of resources for caregivers. This includes a website that allows people to type in their postal code, the kind of help they need - from transportation to personal support workers - and find out what exists in their vicinity. The organization follows similar models in Nova Scotia, British Columbia, Alberta and Quebec.

For caregivers helping relatives and friends who live with dementia, the Sinai Health System's Reitman Centre in Toronto and Alzheimer Societies across Ontario now provide in-person and online programs that offer psychological support and skills training on managing dementia-related behaviours. Funded by the province, the programs teach caregivers how to overcome difficult scenarios at home and meaningfully communicate with their loved ones as the disease takes its toll.

Ms. Beed believes these kinds of educational help hubs are increasingly necessary.

"Our generation is looking at caring for really complex illnesses in our parents, siblings, children or partners," she said. "The complexity of the demand has shifted over the generations. It's not like we have a lot of role models."

PEER TO PEER Our current way of providing care exacts a heavy toll on those doing the caring, as a raft of Canadian research makes clear. More than half of carers felt anxious and 36 per cent experienced depression, according to a 2018 survey of 800 Ontario respondents conducted by the Change Foundation. Half felt their personal time and friendships had suffered. Many struggled financially, some left jobs or were forced out by indifferent employers; others deferred educations to look after their aging family members.

Canadians juggling unpaid elder care with fulltime jobs and parenting told The Globe they were exhausted, overwhelmed and racked with guilt about not doing enough at home or at work.

"It's that struggle that a lot of women face: You want to give 100 per cent of your attention, love and commitment to everything that you do," said Gabriela Gonzalez, a 30-year-old Toronto publicaffairs consultant who, along with her mother, cared for her 64-year-old father before he died this winter.

"You put on a shell and you toughen up and go do it, but when you take a moment to think about it, it's difficult," said Ms. Gonzalez, who has a oneyear-old daughter and teenage stepson.

For burned-out caregivers staring down the distressing daily realities of helping the people

Associated Graphic

Sherri Ferguson helps her mother, Barbara Ferguson, into the bed she shares with Sherri's father, Peter Ferguson, in their home in North Vancouver,


Gabriela Gonzalez holds a photo of her father, who died this past winter. She had been helping her mother care for him, while raising a one-year-old daughter and a teenaged stepson.


Sherri Ferguson has to ensure her parents get their various medications, and to help keep track of which drugs need to be taken with food, she puts certain pill bottles with the plates, far left.

Ms. Ferguson also has a calendar for keeping track of the various doctors appointments for her parents.

Peter Ferguson, far left, who suffers from chronic pain, shares a moment with the family dog.

The Fergusons' bed has specialized controls so it can be adjusted for their various needs. PHOTOS BY JACKIE DIVES /THE GLOBE AND MAIL

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