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.”