Dementia caregivers refreshed by support group
By Laureen F. Guenther
“Dementia can be a very lonely time for the person with dementia, and also for their loved ones,” says Jayne Burnham, Pastor of Care and Compassion at Southview Church in Calgary. A support group at Southview makes that aloneness more bearable.
The support group began meeting about four years ago, after a man in the congregation was diagnosed with Alzheimer’s Disease. Burnham created the group to meet his wife’s need for support.
Something was missing
As more members joined, Burnham realized they received lots of medical and practical information from other agencies, but there was an element missing.
“(What) they were missing out on was deep emotional support that was tied into their faith,” she says. “They wanted to be able to draw from their faith to withstand what they were going through.”
Burnham opens each two-hour meeting with a question, reading or video, spurring a discussion on topics like self-care, spiritual feeding or laughter. Then the floor is theirs.
“I start by asking a question and they talk, and they talk, and they talk, and I will interject a few ideas here and there,” she says. “They have learned so much from each other and I have loved to see these nine individuals just come out of themselves and be refreshed. … They come for soul refreshment.”
“I always end with Scripture or a poem and I pray for each of them by name, for them and for their spouse. … Their part is being friends and just encouraging one another.”
Recently, she says, a group member wept, saying she sometimes felt she didn’t love her spouse anymore. “They just all went, ‘I know,’” Burnham says. “’We get it. Don’t feel guilty for that. That’s normal.’ And they just encouraged her in a way that was beautiful to watch.”
The others told her how they cope with those feelings – looking at old memory books, singing with their spouse, going for a walk.
“They really are, in many ways, the teachers,” Burnham says.
When the group was formed, all the members were caring for spouses at home. Now half of them have placed their spouses into care.
“That (transition of placing a spouse into care) is a beautiful thing to watch too,” Burnham says. “The ones that have done it are helping the ones that know it’s coming, and have really supported them in making the decisions. The first person made it easier for the next person to take that step.”
When a spouse with dementia passed away recently, Burnham says, most of the permitted 15 funeral guests were members of this group.
During COVID-19 restrictions, the group met, physically distanced, in the church parking lot. “The first day we met out in the parking lot was absolutely freezing cold, and they all came,” Burnham says. “They just wanted to see each other so badly.”
At a recent parking lot meeting, one member spoke of the challenges of making decisions alone. Others described changes in their spouses’ sleeping and speaking patterns, asking if others had experienced those.
Group members spoke of their spouses with love and sorrow and understanding. “Their brains have to work so much harder to do the simplest things and it exhausts them,” one said.
When a group member said she’d had a tough month, others said, “You’ll get through, one thing at a time. Not one day at a time, but one minute at a time.”
Three women laughed about the challenges of their husbands’ help with dishes, and one said, “It sounds like three of us are all in the same place.”
Burnham closed the meeting by reading Psalm 121. She prayed for the specific needs of each group member, including absent members, and asked a blessing on each one.
“It’s hard to talk about (what it’s like),” said one member, “but it’s amazing what time and prayer will do, and the support of people, especially this group.”
Members called the group uplifting. Several of them said they couldn’t imagine caring for a spouse with dementia if they didn’t have a church family and this care ministry.
Another member said the group also cares between meetings, reaching out, praying together and bringing meals. One member said he appreciates the phone calls he receives every week.
A woman said this group re-introduced her to church and to God, and is overwhelmed by the care, the calls, the meals and the hugs she’s received. She’s never experienced anything like it. “It’s the love of Christ,” Burnham said.
Another woman said she had to walk the first years of her caregiving journey without support. Now that she’s in this group, she said, she has more life, and even when she feels weepy, there’s comfort here.
In your community
The Southview group welcomes new members who are caring for spouses with dementia, Burnham says, as long as they’re okay with its Christian faith base.
More important, though, she hopes other churches will establish their own ministries to dementia caregivers.
“We (local churches) can be a beacon of hope in such practical ways,” she says. “This is such a practical way to reach out to a group that is very isolated because of their lifestyle, because they’re home caring for somebody and they’re so lonely and they’re so tired. … It’s just such a great opportunity to be what we’re supposed to be as the church.”
“If there is more than one (person caring for a spouse with dementia) in a congregation, get them together. A support group can be just two,” she says. “Give them every opportunity to be in a room together … because they have this collective wisdom and this collective compassion for one another, and they understand.”
“To pray and to chat… they’re not huge goals,” she says. “The purpose is to provide encouragement and hope and faith for the people that find themselves in the journey of being caregivers.”
To learn more about the dementia caregivers’ group at Southview Church, or about starting your own support group for dementia caregivers, contact Jayne Burnham through City Light News at firstname.lastname@example.org.
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