By Warren Wolfe, retired Star Tribune staff writer, now a community volunteer
Anyone who has been a primary caregiver for someone with dementia knows the toll it takes – often years of intense physical and emotional stress as the personality and health of a loved one slowly disintegrate.
And after the grieving subsides and the estate is settled, some of us struggle to find a way forward. What now? Who am I after caregiving ends?
“It is like falling into an abyss,” one former caregiver explained. “I knew who I was when married and raising kids. I knew who I was when I was working. Then I got a crash course in dementia and had a new purpose. But now all that’s gone and I’m not sure what to do.”
That is what led to creating the Dementia Caregiver Re-Entry Initiative.
For more than two years, a group of former caregivers has been meeting monthly to talk about how their lives have changed, the struggles to reconnect with friends, to find a future without a spouse or parent, to embrace the past but find new meaning as life unfolds.
It was started as a pilot program in 2016 by four of us who are members of the Roseville Alzheimer’s and Dementia Community Action Team (Roseville A/D). That grassroots team works to improve conditions for people with Alzheimer’s disease and other forms of dementia, their unpaid caregivers and professionals.
“I know my family cares about me and how I’m doing, but they really don’t understand what it was like, or where I am now,” said one member of the Caregiver Re-Entry group, a man in his 90s who lost his wife after more than a decade of care. “These people (in the group), they really get it.”
The topics are wide-ranging. We talk about dancing, gardening, evening loneliness, changed holiday dynamics, interest groups, cooking for one, online dating, recipes, intimacy, good and bad memories of caregiving, rebuilding friendships, joys and stresses of solitude, poetry and dozens of other topics.
There is no set agenda. While facilitators usually come with a topic in mind, the focus of each meeting is determined by those who attend. More than two dozen people have attended the gatherings over the past 30 months.
Typically, a meeting attracts six to eight people, a mix of men and women. Some were adult children caregivers of people with dementia, but most were spouses – a group that we believe often struggles more with the aftermath of caregiving. We meet afternoons, which works well for retirees and some younger people. We have had a few requests for an evening group.
Aside from two major community meetings, we have not publicized the Caregiver Re-Entry meetings while we tested the concept. Now we are ready to start inviting more people to attend, and we are in the process of writing a workbook for others interested in starting their own groups.
When we first saw the need for such a group – based on our own experiences and those of other former caregivers who had been in support groups or a memory café – we looked locally and nationally for models we might adapt, including attending national conferences of aging professionals. We found none.
But potential participants told us what they did notwant: No fee-based program, no experts telling them how to get healthy, no six-week program or other time limitation, and no grief-support group.
Participants are invited to participate at whatever depth they want, for as long as they want, and as often as they want. Some attend nearly every meeting; some attend periodically; some attend seasonally. Three have formally declared themselves ready to move on. At every gathering there is laughter, and sometimes tears.
We first met as two groups – one for former caregivers only, the other including some nearing the end of caregiving. But we merged the two groups after we found that few current caregivers joined, and the priorities of former and current caregivers seemed not to mesh well.
The common denominator is that all of us have cared for and lost a loved one to dementia, then struggled with issues of identity, purpose and reconnecting with friends and community.
Now we gather to explore and discover the “new me” and to share our thoughts and experiences as we create comfortable new directions for our lives.