Sometimes Judy Connor would sit—energy sapped, imagination flat—wondering, What she was supposed to do now?
With her mom gone, friends thought the self-employed graphic artist from St. Paul would just pick up the pieces of her life now that the caregiving was over. The burden had ended, time to rejoin life, some suggested.
“But when your life has been so focused on caring for somebody and then it’s just over, even when you know the end is coming, you can’t just expect everything to be the same as before,” said Connor, who earlier had helped care for her father and an aunt. “Everything has changed.”
Hearing countless stories like Connor’s—and knowing about their own caregiving experiences—members of the Roseville Alzheimer’s and Dementia Community Action Team (Roseville A/D), began exploring how to help.
Roseville A/D is a consortium of community volunteers, service providers and local government agencies that sponsor programs and activities to help people learn more about dementia. This year it also is sponsoring a monthly series of talks through December called “Dementia: Caring & Coping.”
‘There’s a real need’
After months of planning, Roseville A/D will launch a new Dementia Caregiver Re-Entry Initiative at a kickoff event on Thursday, Sept. 29, at Roseville City Hall from 1 to 3 p.m. Keynote speaker will be Connie Goldman, herself a former caregiver and former National Public Radio reporter and producer, who has written several books about caregiving.
“You know, finally we’re doing a lot more to support people who are providing family care now,” said Goldman, formerly from California and now living in Hudson, Wis. “But we’re not doing anything to support caregivers once the caregiving ends. There’s a real need that people are just starting to think about.”
Roseville A/D members found no ongoing programs for former caregivers that they might learn from, and almost no research into the topic. So they talked for caregivers, former caregivers and began to build a picture of what might help.
As part of the Caregiver Re-Entry initiative, two smaller groups will begin regular meetings in October. They will be groups in which former caregivers can help each make the shift from intensely caring for someone else. Instead, they can focus more on their own often-neglected needs, such as reconnecting with friends and exploring old and new interests.
One group will be for former caregivers, while the other will be open to current and former caregivers.
In addition, Roseville A/D may host some larger gatherings next year to explore topics that emerge from the smaller group discussions.
At the Sept. 29 kickoff, former care partners of parents and spouses will tell their stories of life after caregiving. In addition, a master’s student will describe her research into the need for Twin Cities programs to help former caregivers.
Dealing with more than grief
“When we talked with one group of former caregivers, they were pretty specific about what they didn’t want,” said Lori La Bey, a member of Roseville A/D. She started a “memory cafe” six years ago, a place where people with memory loss and their care partners can come together for coffee, conversation and normal socialization. Now La Bey has two such groups meeting at J. Arthur’s Coffee in Roseville, and the concept is popping up elsewhere around Minnesota and the country.
“What they didn’t want was a formal program with instructors, they didn’t want a grief-support group, they didn’t want a six-week course that just ends and you’re done,” said La Bey, whose business Alzheimer’s Speaks seeks new ways to help people with dementia and their families.
They wanted something more informal—something like the memory cafes—where they could coach each other, share experiences, help find new ways to reengage and reenergize their lives after the care journey has ended.
“Dealing with grief has to be part of that journey, but for many people it doesn’t need to be the focus,” said Sue Van Zanden, another member of Roseville A/D who also leads a caregiver support group at the Roseville Area Senior Center. She and La Bey will help organize one of the new Caregiver Re-Entry groups.
For spouses who have been care partners of someone with dementia—often for five or 10 years—the end can be even more stressful than for adult children. They have lost a life partner, and perhaps the dream of what retirement was to be. Sometimes their finances suffer from the loss of a pension and Social Security, and often friends from the past have drifted away.
“Life has changed, you’ve changed, and sometimes you just wake up in the morning not sure what you’re supposed to do, even who you’re supposed to be,” said George Seiler, 79, of Maplewood, whose wife Annie died earlier last year. “I miss her every day.”
‘Every road back is different’
Like many caregivers helping someone with dementia, Connor faced ongoing challenges. After years of coping with depression, her mom became more and more agitated, refusing to talk to her daughter and nearly being tossed out of an assisted-living facility, until doctors finally got her off dangerous psychotropic drugs and balanced her medications.
It’s been three years since her mom died, and one of the ways helping Connor make a transition has been to stay with the caregiver support group that Van Zanden leads—as many former caregivers do for a time—and to become an assistant leader.
“Every caregiver has a different story and different challenges, and every road back is different,” Connor said. “But nobody understands that journey better than another caregiver. The strength of this new idea is that we can help each other our way home again.”
More information about Roseville A/D and its projects is available at www.cityofroseville.com/dementiainfo.
Warren Wolfe is a retired writer for the Star Tribune, where he covered aging issues. He is a member of the Roseville Alzheimer’s and Dementia Community Action Team.