Life after a stroke—Partnership aims to improve support for family caregivers

Since that day, Lee has been by Kris’s side through everything: two weeks in the acute care hospital; more than three months in rehabilitation at Bridgepoint—as an inpatient and an outpatient; then transitioning back home on the east side of Toronto.

Lee is one of more than 3.3 million family caregivers in Ontario. The vital work caregivers do every day is often under-recognized in the health care system. To address this issue, Bridgepoint is partnering with the Change Foundation and WoodGreen Community Services on Cultivating Change, an initiative to improve the experience of family caregivers whether they’re caring for a loved one in the hospital or at home.

Lee says he never thought he would need to be in a family caregiver role for Kris who is 10 years his junior. He says it’s difficult to quantify all of the ways their lives have changed. “I haven’t had a day off since it happened,” he says.

Before Kris’s stroke, the couple was enjoying retirement. Kris volunteered at a school twice a week. He enjoyed cooking and gardening. Lee volunteered every week for two different community organizations. Kris and Lee would take regular trips out of town to visit family and friends. They also planned to do more travelling abroad.

Since the stroke, Kris has worked hard to regain the ability to walk with a cane and a brace on his left leg. His left arm remains mostly paralyzed. The stroke also affected the area in Kris’s brain that processes vision, leading to visual impairment in his left eye and the left side of his visual field.

Because of the effects of the stroke Kris now relies on Lee for help with daily tasks. The couple has made modifications to their home, including adding a lift on the stairs. Lee makes meals, does the shopping, handles cleaning and maintenance around the house and accompanies Kris to his ongoing rehabilitation appointments twice a week. As his priorities have shifted, Lee has stopped his volunteer work and it hasn’t been easy to get used to the all the changes. “You have to change your mindset. I’ve learned you just have to take it one day at a time. I’ve learned a lot just by doing it,” he says.

Lee is one of the family caregivers getting involved in the Cultivating Change Project at Bridgepoint. This co-design project is bringing together family caregivers and health care providers to identify key needs and design solutions to provide more support for family caregivers. Lee is part of a project group that’s working on developing better training tools for family caregivers in Bridgepoint’s stroke program.

“I like working with people together to get to a common goal. In this case, I hope that this project will make the learning curve a bit easier for other people who are going through the same thing,” he says.