There comes a time when most aging adults can’t care for themselves anymore. With a strained long-term care system, what are families supposed to do?
Beth Fitzmaurice spent more than four years caring for her mom, from the day she was diagnosed with dementia to the moment she died at 91, cradled in her daughter’s arms.
Fitzmaurice, BSc’86, Dip’89, calls it a “journey only love can navigate.” She used humour and optimism to persevere as she responded to countless challenges as a caregiver—her mom’s memory lapses, kitchen mishaps, incontinence, a stroke. Despite the tough circumstances, Fitzmaurice knew she wanted to return the love and care her mother had provided all through her childhood and into adult life. “It was difficult. There is no textbook, no perfect routine. Every day is different, but I wouldn’t change the experience. I know my mom was happy,” Fitzmaurice says. “She knew me to the very end. That’s the greatest gift I could ask for.”
Fitzmaurice is far from alone in navigating that difficult journey. Caregiving is an “everybody problem,” Western health studies professor Marie Savundranayagam says. As Canada’s population ages, almost everyone will either care for a loved one or need care themselves. We’re already at a crisis point.
Families can’t do everything, but with an overburdened health-care system and a lack of community support as older adults grow sicker and needier, their spouses, children and other loved ones are left to step up in a huge way.
For many, it’s unexpected. Almost always, it’s overwhelming. “It’s not just about the individual. It’s a societal issue,” says Savundranayagam. “It can also impact productivity in the workforce. We all have to pay attention.”
The problem? Most caregivers have no experience and little idea where to start. That’s where Savundranayagam comes in. She runs the Caregiving Research Lab within the Sam Katz Community Health and Aging Research Unit at Western.
Using digital tools and unique programs—think virtual reality and at-home education series—her focus is on improving communication between formal or family caregivers and those they support.
Anna Garnett,
Caregivers can only manage in the long term if they’re supported and can care for themselves. If they fail, everything falls apart.
WESTERN NURSING PROFESSOR
Strong communication doesn’t just equip caregivers with tools they need to better help their loved one. It also strengthens relationships—an important foundation for more compassionate and meaningful care. “Caregiving is all about relationships, and communication is at the heart of both,” Savundranayagam says. “In our research, communication is care.” She wants everyone to be supported as individuals with unique needs and rich life histories, not just people who are “sick.”
It’s one reason Savundranayagam developed Be EPIC-VR, a virtual reality training program on “person-centred communication” for health-care professionals like personal support workers to build trust with their clients. She hopes it may one day be available for family caregivers, too.
They’re in desperate need of training and support to stay healthy and maintain strong relationships with their loved ones amid the challenges of caregiving—often while working full-time and raising their own families.
Fitzmaurice, who survived a thyroid cancer diagnosis in her 20s thanks to the support and advocacy of her mom, says she learned through her caregiving journey, “you have to put your own oxygen mask on first.”
“Caregivers can only manage in the long term if they’re supported and can care for themselves. If they fail, everything falls apart,” says Anna Garnett, a Western nursing professor who specializes in the care of older adults with chronic disease.
Community supports are crucial for caregivers, she says. Day programs engage older adults with various conditions and offer built-in opportunities for their caregivers to find peer support and professional advice. “Education is big. When you’re thrust into the caregiving role, you don’t know where to go or what to do,” Garnett says.
Fitzmaurice found the connection and education she needed at McCormick Dementia Services, a London, Ont., organization supporting families and people with dementia. There, she attended caregiver support groups—eventually serving on the charity’s caregiver council—and classes to learn about dementia and how to support a loved one. “I found caregiving can be very lonely. The stigma of dementia made it more difficult. No one really wants to talk about caregiving. Having access to McCormick social workers for advice and counselling gave me a space to talk, vent and even laugh.” She counted on friends, extended family and her church, which she called her “angel squad” for showing up in the darkest times.
From her mother’s refusal to accept her diagnosis to the family challenges that erupted along the way, Fitzmaurice had to navigate complex emotions—including her own.
The realities of dementia made that hard. She taught herself to think of her reality and her mother’s reality as two different, but valid, perspectives. “Sometimes you feel guilty telling lies to your loved one—instead, think of it like reading a book of fiction that brings them comfort,” she said. “You have to be their liaison to the other reality.” Fitzmaurice also took her mom to the McCormick day program, though initially it demanded some creative convincing, since her mom didn’t want to engage in social activities. “I would tell her, ‘You’re going to physical therapy because of your stroke. I’m going to physical therapy too, just down the road.’ For me, physical therapy was down the street at a good bakery,” Fitzmaurice chuckles. “I would run errands. Some days I would just go home and have a nice, hot shower. The key for me was knowing McCormick is a safe, trusted environment with the people and resources to help mom.” Fitzmaurice, who moved in with her mother to care for her full-time, knows those precious hours to herself were part of what kept her going.
Still, it wasn’t easy. Some days, the challenges and the loneliness boiled over. “You’re going to feel alone, have those days when you want to pull out your hair,” she says. “I’m haunted by one particularly bad day when I was frustrated. I went outside to get my emotions in check. I remember mom coming to the back door, crying out ‘Beth, please come back.’ I had to stay upbeat, because if mom sensed I was upset, it made her upset.’”
Fitzmaurice tried to always keep one of her main lessons at the forefront of her mind: Dementia is a disease. Be mad at the disease, not the person. “I tried to remember, mom’s behaviours and reactions weren’t a reflection of her personality. My mom is still there—this is the disease.”
But dementia brought intense challenges, like the “stranger danger” that made her mom fearful of having workers enter the home.
Fitzmaurice really needed the help. When she finally convinced her mother to accept some support—the stroke she suffered had forced her hand—Fitzmaurice tried to lessen the time personal support workers or other homecare services were in their home, taking on some of the workload by preparing the supplies and clothing they’d need to complete their tasks. “I worked to make it as painless as possible for everyone, it just took more effort on my part,” Fitzmaurice says. “I tried to make use of as many tools as I could to keep my mom at home, maintain her dignity and respect her wishes.”
Garnett and Savundranayagam want to expand community support to help others do the same. Along with a team at McCormick and the input of caregivers, they designed an innovative pilot program called McCormick Mobile.
It brought six weeks of in-home training and education to people caring for loved ones with dementia, giving the caregivers access to a social worker, recreation specialist, personal support worker and registered practical nurse. The positive response and results of the pilot—now in an expansion phase—highlight the importance of community care, including at-home support services, day programs and groups where caregivers can connect.
Caregiving is already hard. Not having any support makes it nearly impossible. The risk of not getting it right—not adequately supporting caregivers—looms large. Increased hospital stays are one consequence, a ripple effect that’s both expensive and logistically challenging. As more people wait in hospital beds for transfers to long-term care, health-care capacity is compromised and patients often decline.
A drastic deterioration in caregiver health is another outcome. “They jeopardize their own health to stay in a caring role,” Garnett says. “If something catastrophic happens, that places both people in a precarious situation.” She’s spoken to caregivers who have ignored their own symptoms or waited too long to seek help. “Cancer doesn’t work like that.”
It’s understandable, though. Care-givers are just trying to keep up, often without preparation or places to turn for support. Both trust and access are factors, says Garnett, who studies equity issues around services for vulnerable older adults and their families. A rural caregiver may lack reliable internet access to search for community programs online. An urban caregiver may not know where to seek out respite.
Garnett and Savundranayagam are determined to move the needle. “Change is difficult. Movement can be small. But there are promising initiatives,” Garnett says.
Though it’s anything but simple, at its core, caregiving is about safety and security. Savundranayagam bases her work on relationships because it echoes how she wants to be supported in her later years. “Put yourself in those shoes. I just want someone to love me and take care of me gently.”
Tips for Caregivers
Professor Marie Savundranayagam shares advice for family caregivers:
1. See the person.
Everyone receiving care has a personality and life story beyond their health condition. Honour their story and support their autonomy by involving them in care decisions.
2. Trust your insight.
Family caregivers have an advantage: You know your loved one best. Share that knowledge with care providers—what you have to say matters.
3. Seek support.
Connect early with community organizations and day programs. They will benefit your loved one physically and mentally and give you space to recharge and connect with other caregivers.
