Laughter and friendship found at the Caregivers Support Group

Jane Reddington

Sounder Staff

Tuesday, May 3 2016

“I’ve put aside my dreams for now,” Geri Sumner says “I don’t actually have dreams. I can’t. I’d love to go back to Italy. We did a year’s honeymoon there. I don’t know that I’d want to go back without my husband.”

Sumner is one of 14 participants in the Caregivers Support Group that meets on the first Wednesday afternoon of every month at the Commons. Her husband Jeremy, also 68, was diagnosed with Lewy Body Dementia. They have been married since 1970. “My husband started to be strange. In 2012, he shut down. I was talking for him all the time; I was covering up for him.”

L-R: Nancy Jenner, Geri Sumner, and Angela Nutter with a ‘dammit doll.’ Jane Reddington photo 

Sumner is now her husband’s primary caregiver. She had hoped to enjoy their retirement from teaching but then came Jeremy’s diagnosis. Going to the Caregivers Support Group means she can talk to others in the same position and find some relief for her situation.

“The group gives relief because we talk about life as it is. Twenty-four hours a day I’m the cook, cleaner, caregiver and worrier.” The Lewy Body Dementia has left Jeremy a shadow of his former self. He waits outside on the porch for us because he cannot be left at home alone. Sumner says even his facial expressions are affected. He doesn’t smile anymore, doesn’t make eye contact and has a completely different personality. Sumner also talks about the loneliness felt with losing a life partner. 

“The neurosurgeon in Victoria told us it would be like falling off a cliff.” But the loss is not only for Sumner, her daughter feels it too, with a 10-month-old baby. “My daughter finds it really hard to see her dad. It makes her sad. Her dad would have been a wonderful grandfather.”

But Sumner says she has learned to cope by keeping their fitness up. They go to Nanaimo during the week to the gym, for swimming at the pool, and skating. “I keep him in good physical shape, he could outlive me.” Sumner’s is not an uncommon story.

Angela Nutter facilitates the Caregivers Support Group with Nancy Jenner and Judy Moxam. Most of the participants are women in their mid-60s, but a few men come too. The group came together about five years ago, between the Anglican Church, the United Church - of which Jenner is on the Outreach Committee that goes into the community to see where they can help - and the PHC.

“I can tell you of one woman who used to come,” Jenner says. “We’d laugh, but she wouldn’t laugh. In the last little while, she’s been talking more and laughing and taking it in. It’s been wonderful.” Jenner says the group brings people out of themselves. “They relax and realize they’re accepted. What is said doesn’t go beyond the group. It’s good for them to experience a release that’s really amazing.”

Nutter’s husband, Al, had been diagnosed with cancer in 2006 but survived. Her experiences caring for him made her realize that there needed to be a place where she could unload with people in the same situation who understood.

The morning light streams into Nutter’s sunroom and her husband’s gift for wood carving is apparent on every window and shelf that holds his wooden figurines. Nutter, who was born in England, emigrated to Canada 24 years ago. She is also a retired teacher and stresses that everything shared in the group is confidential. While many hear the refrain “patients are better at home,” Nutter says to be better at home you really need a free caregiver. 

For six weeks Sumner tried putting Jeremy in the Traveller’s Lodge in Nanaimo that cares for people with all sorts of dementia but Jeremy would call her every day. Although much of her husband has been lost to his illness, he still remembers names and faces. Sumner says she found that experience heart wrenching.

There are many things Sumner has given up - her sewing, reading, having horses and dogs - but her mental health is strong. She has a paid caregiver come to her home twice a week so she can get out for three hours at a time.

When I ask if she feels robbed of her retirement she says yes, but being a caregiver has made her a much stronger person. She feels she has much more compassion for people who are struggling. Spending time with her granddaughter is another way Sumner keeps her mental health in shape. 

“I thought the Caregivers Support Group would be a lot of moaning and groaning but I went and people were laughing their heads off.” Nutter says many of the situations that are so hard to cope with are also very funny. 

“I stopped being happy,” Sumner says. “On beautiful days, I would walk in the fields where we’d had horses and think I’ll never be happy ever again. I had to get rid of everything I did in life to care for him.” In talking with her daughter, they said they were both in the same situation, something she never expected for her life.

Sumner says getting braces on her teeth is something she is doing for herself. “It’s something I’ve wanted to do my whole life. I clenched my teeth so much worrying about him that I cracked one. I got it fixed and then went to the orthodontist. I’ve had them for about a year.” I’ve never met anyone more proud to have braces than Sumner. 

The emphasis of the Caregivers Group is about what participants are doing for themselves. A “dammit doll” is passed around the group to take home and release frustration. The words on the back read, “Whenever things don’t go so well and you want to hit the wall and yell, here’s a little dammit doll that you can’t do without. Just grasp it firmly by the legs and find a place to slam it. And as you whack the stuffing out yell, dammit, dammit, dammit.” 

The caregivers who have held this doll all share the feelings of loss, exasperation and loneliness. Jenner says the new members are so open that they say it all. “Sometimes I come home and I think these women are amazing. I always thought I couldn’t do it. But you don’t know what you can do until you have to.” 

This group shares a remarkable intimacy that at once lifts, restores and helps manage the stress of being a primary caregiver. If you are interested in attending the next meeting please call Angela Nutter at 247-9732.