Stephen Garth’s best friend is his wife Connie. They’ve been married 37 years, have travelled the world and still spend every day together.
They just don’t talk anymore.
Nearly two years ago Connie suffered a stroke that caused short-term memory loss and aphasia, which impairs her ability to interpret language or speak in complete sentences. She might say yes when she means no, or forget the purpose of simple objects like a table.
It makes conversation between the couple nearly impossible.
“Is it that a chair over there? Is it that a toque? Is that you?” says Stephen. “It’s a hard game.”
Stephen is part of a local support group that includes people who have suffered strokes as well as their caregivers. They meet regularly for coffee to talk about available services, daily difficulties or nothing at all. Just being around each other, sometimes, is enough.
Marg Dietrich started organizing the weekly meetings five years ago. When she was 12, Dietrich’s father suffered a stroke. He never walked or talked again.
In Nelson, Dietrich volunteers for the Stroke Recovery Association of British Columbia (SRABC). She sets up activities such as art therapy, swimming or even walks in the park while also inviting medical professionals to speak with her group.
“This is what I’m supposed to do, because that’s what I grew up with,” says Dietrich.
Cerebrovascular diseases including strokes, which occur when brain cells are damaged by a lack of blood flow either by a vessel blockage or rupture, are the third-leading cause of death in Canada, according to a 2018 Statistics Canada report. The SRABC says about 8,100 strokes occur annually in B.C.
The Nelson stroke group currently includes about 25 people, but Dietrich says there should be more. One reason for that, she says, is a gap in support between when a person leaves hospital and when they re-enter the community.
“It’s a lack of connection. I just want the people at the hospitals to say, ‘When you get home, phone her.’ That’s all they have to do. It’s starting, but it’s taking a long time.”
Shirley English is a member of the group who Dietrich sought out after hearing she had had a stroke three years ago. She lives alone with her nephew, and relies on the group to keep her social.
“People can talk to each other and I’ve learned more about strokes from being in the group than I did from anyone else or any other source,” she says.
Others find the stroke group by word of mouth.
RJ Warren has had three strokes since 2017. The second one cost him feeling in the entire left side of his body, which meant stepping away from two of his passions: slo-pitch and hockey officiating.
“Strokes take away,” says Warren. “That’s the sad part, you lose stuff in it. You tend to lose relationships with people. I know I’m a lot quieter, a lot number when things happen.”
As Warren speaks, Shawn Lamb sits silently at the other end of the table.
Lamb, the former Touchstones Nelson archivist, lost her partner five years ago. Then two years ago she suffered a series of transient ischemic attacks, or mini-strokes, that brought on aphasia.
Since then she’s relied on Marianne Tremblay, a family friend and former coworker. Tremblay says the pair encountered Dietrich’s group by chance during one of their outings to the Nelson and District Community Complex.
In addition to the group, Lamb also attends Broader Horizons’ adult recreation program twice a week.
“That’s my break. Or probably her break,” says Tremblay.
Other than that, they are together at all times. “It is intense,” she adds.
Like Tremblay, Stephen’s life is now dedicated to the health of another.
Connie was hospitalized after suffering a fall just before the new year, so a visit with the group now counts as Stephen’s precious downtime between hours spent at Kootenay Lake Hospital.
“The thing about being a caregiver,” he says, “it’s the toughest job I never applied for.”
He compares his life with Connie now to lyrics in the Bruce Cockburn song “Pacing the Cage.”
“Sunset is an angel weeping, holding out a bloody sword. No matter how I squint I cannot make out what it’s pointing toward,” recites Stephen.
He stops there, but Cockburn’s verse goes on:
“Sometimes you feel like you’ve lived too long, days drip slowly on the page, you catch yourself, pacing the cage.”
For more information on local support services, or to join the group, contact Dietrich at 250-354-4453. Dietrich’s group meets Fridays during the winter. It’s eight spring sessions at Taghum Hall begin Friday, April 3, and include speakers and activities.