A new video series is trying to change the language around caregivers across Canada with biting, yet humorous examples of inappropriate things people say to caregivers of loved ones who are ill or disabled.
“I heard things that made me feel worse, multiple times a day,” said Katrina Prescott, who cared for her mother Kathryn Rose, who had dementia and other chronic health issues. The seven years of caregiving was done out of love, says Prescott, but was exhausting and isolating.
When well-meaning friends would show their concern by telling Prescott she “should get more help,” and that she should “take more care of herself,” she struggled to explain how it wasn’t physically or financially possible.
“I was exhausted, and I would feel judged that people didn’t really understand the scope of what I was navigating,” said Prescott. “Those types of comments just really added weight to my already very, what felt very heavy, world and the level of exhaustion that a person encounters when they’re caregiving is inhumane.”
Following her mother’s death in 2022, Prescott began collaborating with Jessica Fraser, another longtime caregiver for a mother with dementia. Their mutual frustration in the face of years of misguided support gave birth to a YouTube series called, “Things Not To Say To a Caregiver.”
The seven episodes are based on real events, drawn from those caring for elderly parents, spouses and children with chronic illnesses or disabilities. Each segment runs for three minutes, but delivers a punch against key problematic phrases targeted by the two caregivers:
“You need to take time for yourself.”
“Your mom should be in long-term care.”
“You should get more help.”
“I couldn’t do what you are doing.”
“You’re an angel.”
“Let me know how I can help.”
“It just takes so much work for me to think about HOW I can ask you to support me,” said Prescott, adding actions, not words, count. “Just walk in my house, you can see it. It’s a mess. Do some dishes or take out the garbage. There’s so many things that could be done,” she added.
The videos also introduce a character Prescott dubbed her “Carey godmother” -- a fairy godmother for caregivers -- who humorously identifies the hurtful or unhelpful phrases, and then pointedly delivers guidance to improve supportive communication.
“We learn through discomfort,” said Vivian Stamatopoulos, a researcher at Ontario Tech University who has studied caregiver stress. “You had some comedy, but you also had a stark reality of how tough it is for the actual caregiver, and how sometimes well-intentioned advice can really hurt and be offensive,” she said.
“Don’t ask them, ‘What can I do to help?’ Because they’re already making 1,000 decisions, and just cannot tell you what they need,” adding people should communicate with empathy and understanding. “Offer very tangible, small things. Can I bring you a coffee? Can I come in and sit in at your place for a bit while you go run errands?”
In less than two weeks, and with little publicity, the videos have a combined half a million views and climbing.
One of the most popular segments, according to Prescott, addresses the practice of calling the caregiver an “angel” for doing the work of tending to a loved one. Experts say while it’s meant as a compliment, it puts caregivers on a pedestal and overlooks the inevitable frustrations of the role.
“Instead of saying, ‘Oh, you’re such a saint for doing this,’ saying, ‘I really see the love you’re offering your mom,’” said Liv Mendelsohn, the executive director of the Canadian Centre for Caregiving Excellence.
Prescott wants caregivers to share the segments, sparing them the distress of explaining and educating visitors. The videos are already working.
“When my friends watch it, they ask ‘Was that me? Did I do that?’ (They) are taking a lot of time to really reflect and I appreciate that,” she said.
Invisible and growing caregiver burden
About one in four Canadians are unpaid caregivers to a family member, friend, or neighbour, according to a survey by Statistics Canada.
Surveys show most perform about 5 hours of care daily, often in isolation because the rest of their day is consumed with their own work and other personal and family duties.
The videos, says Mendelsohn, helps shine a light on their plight.
“We know that caregivers are doing a lot of what they’re doing behind closed doors. They’re doing toileting and managing medications. And they’re exhausted.” she said.
According to recent research, 47 per cent of caregivers report feeling tired, 44 per cent report feeling worried or anxious, with 37 per cent saying they feel overwhelmed because of their responsibilities.
University of Alberta researchers found that 75 per cent of that care being provided is unpaid. As caregiving obligations increase, caregivers who have other jobs face a growing risk of burn out as they try to balance their professional obligations and private duties to family.
With Canada’s aging population -- and a national shortage of assisted living, home care services and long-term care beds -- the number of people who will have to care for loved ones will only grow.
It’s prompted advocates to push for more recognition and support for caregivers, including help with mental health and financial obligations for home health care supplies. The biggest call for help, says Mendelsohn, is for occasional breaks or respite care because “90 per cent of caregivers have told us they desperately need this.”
“It’s very hard to find help in the system, and it really is very demanding,” says Prescott, who is now a support coach for others who care for loved ones.
“They need help. This is a 911 you know, and it’s ignored.”
