George lost his wife two years ago to dementia and still misses Annie deeply — her companionship, her voice, her touch, even the endless tasks that gave his life meaning as he brought her peace and comfort in a world she no longer understood.
Marian’s husband died four years ago, and even though “he is now at peace” — after dementia led him deep into disruptive behavior — her calmer life also includes difficult times of aloneness, despite attentive friends and family.
“The worst is at night. Holidays are great with my kids, but I come home to an empty house,” she said. “I’m learning how to be comfortable with myself, but that takes time.”
George and Marian are among about 15 Roseville-area residents who for the past 10 months have been gathering in two groups to explore how to re-engage with life and better care for themselves after years of caring for someone with dementia.
Laughter and tears
The Dementia Caregiver Re-Entry Initiative includes one group that welcomes former caregivers and current ones nearing the end of their journey. It meets on the first Wednesday of each month at the Roseville Area Senior Center. A second group, reserved for former caregivers, meets on the third Tuesday monthly at New Life Presbyterian Church in Roseville.
Four or five participants often attend both groups, which meet from 1 to 2:30 p.m.
At the gatherings, emotions sometimes are raw as participants talk about lost physical intimacy; shattered retirement plans; and careers or volunteer work lost due to caregiving.
But there’s also laughter — and delight in new-found physical fitness, planting flowers, visiting relatives, stretching into new friendships, adapting recipes, resuming hobbies and even the idea of dating.
Each group has two co-facilitators who cared for parents with dementia. Most participants were in support groups during caregiving. Only a few current caregivers have attended, and most participants are widowed.
“I may suggest a topic, but those who come know what they need to talk about,” said Sue Van Zanden, a co-facilitator who also leads a caregiver support group at the senior center. “Mainly my job is to open the door and get out of the way.”
“It helps to talk with people who understand what you’re going through,” said Ed, whose wife died two years ago after a decade of decline with dementia. “My kids care. My friends care. But nobody who hasn’t lived it really knows how hard that time was, and how hard it is to find a new path.”
How it all began
The idea for the Dementia Caregiver Re-Entry Initiative came about two years ago, when Sheryl Fairbanks — struggling to figure out “Who am I now?” after a decade of intense caregiving for her mom with dementia and her dad with physical issues — attended a few national meetings with aging experts, seeking a re-entry support program she could replicate, but found none.
So she and three colleagues created their own new program with the Roseville Alzheimer’s and Dementia Community Action Team (RSVL A/D), a volunteer group she joined in 2014. They introduced the concept at a community forum in September 2016, and monthly meetings began in October.
While the initiative focuses primarily on former dementia caregivers, the model also could serve other care partners, said Lori La Bey, a co-facilitator whose three decades of caring for her mom led her to start the online Alzheimer’s Speaks blog and podcast, and Minnesota’s first memory cafe. (A memory cafe is a safe and comfortable space where caregivers and their loved ones can socialize, listen to music, play games and enjoy other appropriate activities. Find locations at memorycafedirectory.com.)
Thanks to La Bey and other groups, an increasing number of caregivers are learning they don’t have to feel isolated because of their challenging caregiving journeys.
In November, La Bey will lead people with dementia and their families on a Caribbean cruise combining relaxation and
On Nov. 9, Dementia Caregiver Re-Entry Initiative support group participants will describe their experiences at a Caring & Coping series talk — and will post tips on forming similar groups at cityofroseville.com/dementiainfo.
Warren Wolfe is retired Star Tribune reporter who covered aging and health-care policy. He’s a member of the RSVL A/D and a co-facilitator of a caregiver re-entry group.