His gift of gab proves useful

Enlarge Image

Terry Cousins encourages people to keep coming to support groups, even if the loved one has passed away. (PHIL HOSSACK / WINNIPEG FREE PRESS) Photo Store

‘It’s funny, my wife, Kath, when we were younger and everything was cool, she used to tell me I talk too much," says Terry Cousins, laughing, a glimmer, perhaps even a twinkle in his eye. "She said, ‘Terry you talk too much.’

Maybe this is the reason why Cousins is such a great volunteer presenter and facilitator for Alzheimer Society of Manitoba's caregiver support groups. His beloved wife, Kathleen, or "Kath" as he calls her, passed away as a result of Alzheimer's on Oct. 4, 2008.

"Before she was diagnosed at age 57, I had never heard of early onset Alzheimer's," he says. His wife first started going to Alzheimer Society of Manitoba meetings, and Cousins would drop her off. Then he retired from his job at VIA Rail, worked in a care home for a few years, and finally retired in order to care for his wife full-time. This is when he started attending support groups offered by the society specifically for caregivers.

"In 2004, the society approached me because, well, I had no trouble talking, and asked if I would be interested in taking the training to become a caregiver support group facilitator. Before then, I had been doing presentations on living with Alzheimer's for people just diagnosed and their family members," says Cousins.

He decided to do the training and become a volunteer facilitator.

"It's something not everybody can do because sometimes people can get too caught up in the emotion part. But with me and my wife, it was a 10-year journey -- it's like a 10-year grieving process -- by the time I got to the end of it, moved on and the crying part was over, I felt that if I could give back from my experience, and if it helps anybody, then I'm gonna do it, because for me, it's a feel-good thing, too, when you see that you're helping somebody. And you know a lot of people aren't shy about telling you that you do."

Alzheimer's disease is a fatal, progressive and degenerative disease that destroys brain cells and accounts for 64 per cent of all dementias. According to the Alzheimer Society of Manitoba, almost 20,000 Manitobans have Alzheimer's disease or another dementia. Last year alone, there were over 4,300 new cases of Alzheimer's disease or another dementia in the province. Sixty-four per cent of Manitobans with Alzheimer's disease are women. The society says caregivers spend more than nine million hours of informal unpaid care.

Cousins says the No. 1 piece of advice he would give to a caregiver is, "Get yourself to a support group."

"People who come in for the first time, they're going through hell, and I know what they are going through because there were days I was tearing out my hair, too, but I have to try to guide them more to a place where they can start to focus on themselves," says Cousins. "Because when they are looking after themselves, they can care better for the person they are caring for. It's sometimes tough to get them to realize that.

"Caregivers have come and said to me, 'I thought I was the only one who had this problem,' but when they start coming to the support group, they realize they are part of a big, big group."

"One thing I always say is, 'The movie is the same, the only thing that's changed is the actors' because in general, the progression (of the disease) is similar. The only thing that changes is the personality of the person. Some are angry, but my wife was a happy woman. I realize that now -- that when I was caring for her, I had it good."

Cousins encourages people to keep coming to support groups, even if the loved one they are caring for has passed away.

"What they don't realize is they have something to offer to the new people, sharing what they have been through, if they are comfortable doing so."

Cousins also advises caregivers: "When they call you their aunt when you're their sister, try not to get hung up on it. They know you're someone they know, they just can't put their finger on it. What I say is, 'You know who you are and nothing can change that.' "

Cousins' firsthand experience often proves more valuable than advice Alzheimer's society staff members provide, says Maria Mathews, a client support manager and family educator.

"Terry, having journeyed through this as a caregiver to his wife, his ability to take those lessons and share it with others, it's incredible," says Mathews. "It's a message that a staff person can't always get across. He is able to give the family perspective at workshops, and caregivers often say there is more of an emotional connection to Terry when he speaks."

Memories of his wife keep Cousins on the helpful path he's chosen.

"When you get married, you don't know the cards you're going to be dealt. But when you do, you play it, and that's exactly the way I looked at it when Kath was diagnosed with Alzheimer's," he says. "I think another one of the reasons I do it is because Kath knew I could do this and I think if she were here today, she would have been very disappointed if I wouldn't have."

To learn more about support groups, upcoming workshops and how to become involved, visit the Alzheimer Society of Manitoba website at www.alzheimer.mb.ca .

If you know a special volunteer who strives to make his or her community a better place to live, please contact Carolyn Shimmin at carolynshimmin@gmail.com .

Republished from the Winnipeg Free Press print edition September 24, 2012 B2