As retired volunteer chaplains, Fred and Laura Lake spent years helping families struggling with dementia, but they never imagined it would affect them so directly — until Laura Lake was diagnosed with dementia in 2019.
“We were not new to dementia, but we never thought we would face it,” Fred Lake said. “In all the years we were chaplains, I believe the Lord was preparing us for where we are now.”
For both Fred and Laura Lake, it has been important to do something every day that uses some form of brain power. Since June, one of those activities has been the HOPE Dementia Support group for individuals with memory loss and their care partners that meets the first and third Monday of the month at Grace Lutheran Church.
Lori Massie and Carol Becker started the support group in June. It’s the only support group through HOPE that offers a place for both caregivers and their loved ones with dementia. Most of the other groups in the area offer a space for just the caregivers.
“The people with dementia get to have an opportunity to talk to each other about what’s happening to them,” Becker said. “That’s their group and only they, and people like themselves, understand.”
Search for support
Ken and Helen are another one of the eight couples currently in the support group.
In November 2019, Ken and Helen discovered that Helen had been diagnosed with dementia. Following the diagnosis, the couple, who asked that their last name not be used, went into a sort of lockdown — months before the rest of the world followed suit as the COVID-19 pandemic took hold.
Though the couple initially cut back on activities following the diagnosis, they started looking for a support group. In the search, it quickly became evident that there were dozens of support groups for caregivers, but very few spaces that also welcomed the person with the dementia diagnosis. They eventually found a group through the Alzheimer’s Association of Oregon and Southwest Washington, but that program was shut down and moved online once COVID-19 took hold.
“We could have done Zoom meetings, but Helen doesn’t react well to that kind of environment,” Ken said. “So it just didn’t feel worthwhile.”
In June, the Area on Aging and Disabilities of Southwest Washington connected Ken and Helen to a new support group through HOPE Dementia Support.
“It’s really important to have a lot of things to look forward to, because there’s so many things Helen can’t do, or won’t do,” Ken said. “So I’m entertainment central. We try to do something every day.”
On the first and third Mondays of the month, they look forward to the HOPE Dementia Support group for individuals with memory loss and their care partners.
“You become like a member of a family,” Helen said. “For most of those people, that’s the only contact they have.”
Characteristics of the group
Massie and Becker begin each session of the support group with an educational piece, as a way for the caregivers and people with dementia to learn more about the disease and what they may be able to expect moving forward. But everyone experiences dementia in a different way.
“One thing they constantly tell you is that everybody’s dementia is different,” Ken said. “There are no two people that suffer the disorder in the same way.”
While the support group cannot function to prepare people for exactly what they can expect from dementia moving forward, it offers a space of support and resource sharing.
After everyone has gathered at the beginning of group, the crowd splits into two smaller groups. Massie stays with the caregivers and Becker takes those with the diagnosis.
In 1985, Becker went into a coma after getting viral encephalitis. As a result, she experienced temporary memory loss. Knowing what it feels like to lose your memory has helped give Becker a unique understanding of what those with dementia are going through, she said.
In her group with those with dementia, they spend each session doing introductions, playing memory games and holding space to talk; Becker lets the participants lead the conversation.
“The people with dementia get to have an opportunity to talk to each other about what’s happening to them,” Becker said.
Laura Lake remembers one of her favorite groups when she wanted to dance so she got up and did a waltz with another participant.
“[The group] helps me realize I’m not alone,” Laura Lake said.
With the caregivers, Massie helps provide a space for people to talk about their struggles and joys, since being a caregiver can be isolating and raise many questions, she said. Being around other people going through similar experiences can help provide support and resource sharing.
Massie first joined HOPE in 2018 when she and her sister became caregivers for their mother, who had Alzheimer’s.
“It provided me the chance to talk about what was going on,” Massie said. “It just gives you the comfort of talking to people that understand.”
HOPE Dementia Support offers nine weekly support groups across Clark County, and Massie and Becker lead the only one also catering to individuals experiencing memory loss. The organization is hoping to offer more groups, including ones for people with memory loss, but is limited by a need for facilitators.
For more information on how to join a support group or become a facilitator visit hopedementiasupport.org, email alwayshopeinfo@gmail.com or call 360-513-5754.
