For care partners of people with dementia, connecting with friends and other care partners can be instrumental in maintaining a sense of well-being.
When Alice Lung’s husband, Tony, was diagnosed with early-onset Alzheimer’s at the age of 55, she — like 60 percent of care partners these days — became depressed. Lung was working full-time as a nurse educator at the time, and she was quick to recognize the symptoms of depression. Tony’s diagnosis, his decline, and the toll of caregiving were turning her life upside down.
In the beginning, Lung monitored Tony, making sure he was taking his medication and eating his meals while she was at work. Then bathing became a problem for him, along with dressing — Tony didn’t know which clothes were clean or dirty, and he resented his wife telling him how to shower and what to wear.
“It was really hard to instruct him and he wouldn’t listen to me,” remembers Lung, who lives in Vancouver and has now retired. “I was really frustrated. I was really depressed — I didn’t know what to do.”
"Care partners are dealing with a lot of different feelings — anger, guilt, a lot of stress. Really, they need to be able to have a listening ear and to have validation for what they’re going through."
– Misia McCallum
Additionally, her husband could no longer work as an accountant, so finances were suddenly a problem. Lung was also mourning the change in their marriage, which had always been happy and easy. They had gone from equal partners to caregiver and dependent, roles neither of them liked. They were fighting daily.
“I really wanted to kill myself,” Lung confides.
Lung’s eventual salvation was acceptance. Once she stopped fighting with Tony about things he couldn’t help or change, their relationship improved. Lung began journaling about her feelings — she would write down five bad things and five good things.
“I wrote a whole book, and then I threw it away,” she says. “It’s really helpful to get out your feelings.”
Lung sought support from a social worker and a psychologist, and she confided in friends about her struggles over her husband’s illness, which helped. She also joined an in-person support group for caregivers of people living with Alzheimer’s that she found through the Alzheimer’s Society of British Columbia.
Lung has found it beneficial to share problems and solutions with those on a similar journey.
“We all really enjoy [the group] because it is a time for us to express our feelings and exchange ideas,” she says.
Connecting with people who understand can be crucial, say experts.
“Care partners are dealing with a lot of different feelings — anger, guilt, a lot of stress. Really, they need to be able to have a listening ear and to have validation for what they’re going through,” says Misia McCallum, a dementia care coach with the Dementia Society of Ottawa and Renfrew County, Ont.
“They do need to connect with peers who are going through the same thing. They need to see that what they’re going through is actually quite normal in their new world.”
Since Tony moved into a long-term care home two years ago, Lung’s role has shifted once again. She visits him every day to help manage his hygiene and make sure he has companionship.
“I walk with him and stay with him for lunch. Even though he’s sick, and I have lost my husband — he’s not like before — still I can do something for him,” says Lung. “These are very good memories for me.”