Spouses of stroke survivors advised to move beyond caregiver role

Marriages often turn into a patient-caregiver relationship after a stroke, says a Canadian researcher who has looked at how the role changes for couples.

It's estimated 62,000 strokes occur in Canada each year, about one every nine minutes, according to the Heart and Stroke Foundation. It's the third-leading cause of death in this country and the second-leading cause of death in the world.

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Researcher Sharon Anderson of the University of Alberta in Edmonton interviewed 18 Canadian couples who are living with stroke. Her interest in the field was piqued after her husband had a stroke in November 1997.

He was initially told he wouldn't walk or talk again, and Anderson was advised to put him in a nursing home. After rehabilitation, he now rides a recumbent bike, runs a website and walks and talks.

"Is he recovered? Recovery is a funny word," she said. "No, he's not recovered. He still has some problems from the stroke but for all intents and purposes, I'd say he is still my husband."

Other research suggests people in good relationships live longer. But Anderson said the rates of divorce and separation are much higher after strokes than they are in cancer and other conditions, which also place stresses on couples.

At Friday's CanadianStroke Congress in Toronto, Anderson presented an abstract of her findings based on interviews with 18 other couples living with stroke on their relationships:

• 12 were satisfying or very satisfying.
• Three dissatisfied.
• One separated.
• Two divorced.

One of the common themes couples shared with Anderson was no one ever told them what to do with their relationship. Instead, they were "just doing this by the seat of our pants."

Marriages inevitably turn into a patient-caregiver relationship immediately after a stroke. Couples need to learn to move past those roles to stay together and be happy, Anderson said.

She discovered a key question: "What is it you both need in this? I think that would help them to realize that we need to look at not only what the survivor needs and recovery for the survivor, but what also the spouse needs."

'I liken it to being a snowglobe'

Larry and Jacquie Poff of Spruce Grove, Alta., are one of the couples Anderson interviewed.

"It's just very surreal," she recalled of the devastating stroke she suffered seven years ago at the age of 38, when she keeled over in her husband's arms in the bathroom while getting dressed.

"I liken it to being asnowglobe, and havingbeen shaken and all the stuff is floating around and you're waiting for it to settle down a little bit before you even realize what's happening."

Poff said she went from living an active and busy life as a full-time employee and an involved mom to having to take a back seat to her husband.

Along with the loss of mobility came personality changes, said Larry Poff. "I don't think she'd like me to tell you how depressed she was because it was very dark, a very bad place. And I was always hopeful and always making the effort."

The Poffs sought counselling and their relationship survived with the support of friends and family. She's regained her mobility and still lives with other effects of her stroke.

"She looked after me so well for the first 20 years together," her husband said. "I said early on in the hospital thatI'd spend the next 20 looking after her and that's pretty much the way it's been."

Anderson said more research is needed on whether satisfying marriages or dissatisfied onesmake a difference for recovery and spousal burden.