Caring for a family member with memory loss need not be an isolating experience, as a support group for caregivers of people with dementia is as close at the Algonac-Clay Library.
Algonac-Clay Library Board member Judy Campbell began the group almost a decade ago to provide hope to caregivers navigating the tricky tightrope of the medical world and a new relationship with a loved one. Although attendance declined during COVID-19, she is now seeking to increase participation.
“It is not so much questions as sharing frustrations. People just don’t understand how hard it is, how all consuming it is, trying to navigate the medical world. Sharing, ‘Where did you go to get your test? What kind of test did you have? I don’t understand what they are telling me.’ The frustration of not having answers,” Campbell said.
The dementia/Alzheimer’s caregiver support group meets at 6 p.m. on the first Wednesday of each month at the St. Clair County Library System’s Algonac-Clay branch, located at 2011 St. Clair River Drive in Algonac. The next meeting is scheduled for April 2.
Campbell, who is a part of the Algonac-Clay Friends of the Library, also has a master’s degree in counseling. She said the dementia/Alzheimer’s caregiver support group evolved out of a grief support group she began at the library.
“It was hearing people in the grief support group who had been caregivers for people with dementia, the frustration they experienced,” Campbell said.
She discovered caregivers for people with dementia and Alzheimer’s are often grieving in a different way, missing the person that they knew before the disease took hold.
“If the person you are caregiving for reaches the point where they do not recognize you, you grieve,” Campbell said.
Campbell also said she offers caregiver participants in the group a resource for help and materials from the Council on Aging. She also often recommends caregivers read a book called “The 36-Hour Day,” which offers a quick index to some common concerns.
“I am simply a facilitator for the idea that in the group, you find out you are not alone, and that you have some of the same issues,” Campbell said. “Sometimes there are issues that you had and found the answer to, and you share with people who have not found the answer yet.”
A common concern among caregivers for people with dementia and Alzheimer’s is the frustration of coping with variations of how the diseases progress, as it can vary from person to person, Campbell said.
“Sometimes there are good days and bad days. A family member may show up on a good day and say to the caregiver, ‘It’s not so bad, they are fine.’ The person caregiving 24/7 has a different view, they are there on the bad days,” Campbell said. “Also not knowing, ‘Is it going to progress fast? Are they going to become aggressive? Are they going to remember who I am?’ There is no common answer. Each individual’s path is unique.”
One idea that dementia/Alzheimer’s caregiver support group members have found helpful is that they need to let go of some expectations, according to Campbell.
“The realization that they have come to in the group, sometimes, is, how would I say this, to stop making sense of something that doesn’t make sense,” Campbell said.
Although the group is primarily for caregivers of people with dementia or Alzheimer’s, Campbell said caregivers of all types are welcome to join. There is no registration necessary to join the group and no cost. Participants are invited to drop in, and may bring the loved one they are caring for with them.
For more information, call the Algonac-Clay Library at 810-794-4471.
Nicole Tuttle is a freelance reporter for The Voice.
