Jonas Sandberg and Henrik Eriksson of Mälardalen University interviewed a small group of carers from a medium-sized town in the south of Sweden. The men were aged 65 to 78 years, and all had adult children. Their spouses suffered from dementia, stroke and Huntington’s’ disease. The study was part of a larger project Men as Caregivers in Late Life.
Details of the study appeared in the journal Quality in Ageing – Policy, Practice and Research (Vol. 8, 2007).
Coping with change
The participants had been married for between 20 and 40 years. The study found that the wives’ illness shattered the men emotionally and transformed their martial relationships,
"The most difficult thing is that we can’t do anything anymore," one carer said. "But I have to look back to all the things we used to do . . . live on the memories."
The men maintained the idea of being a couple by finding things to do together.
One participant took his wife downtown in a wheelchair to do some shopping or go to the post office. Another man’s spouse continued to accompany the family to the cabin for winter visits. "Even if I had to carry her up the stairs she had to come with us," he said.
The findings showed the men approached the practical aspects of caregiving by thinking of it as a "new working situation."
For example, "John" described how he reconstructed the kitchen and built a wheelchair ramp for his wife. Another man developed a plan to help his wife rehabilitate after a stroke. And "Steven" learned to cook so that he could be as good as his wife "Karen" was.
In fact, participants kept their spirits alive by setting clear goals and meeting them.
As for social relationships, the study found the men’s world contracted during the period they spent caring for their spouses – between one and 12 years. They received little support from their male neighbours and friends.
"They say that they’re sorry for me," one man remarked.
No place like home
The participants worked hard to maintain close ties with their partners, especially by avoiding a move into a care home.
John described what happened when his wife, who has dementia, wakes at night: "Turn on the light," she says. "Hold my hand."
"Who the hell will hold her hand or turn on the light in a nursing home?" He asked.
Steven said he longed for the times when his children came to give him a few hours of rest. He was upset by their calls to move their mother into a nursing home because she needed more help. For now, he is determined not to "give up," and to take one day at a time.
The men were convinced that, if the situation were reversed, their wives would have cared for them at home for as long as possible.
This study opens a rare window into how older men cope with caring for a spouse in a domestic situation. Findings showed the men experienced their wives’ illness as a major source of stress.
The men’s stories shed light on how they created new roles and coped with changes in their marital relationship.
Researchers emphasized the need for timely and effective support. They called for the development of programs based on the experiences of active caregivers. Such programs, they noted, would empower carers and reduce stress.