CJFS Caregiver Support Group
by Pam Leonard, LBSW, CDP
Twice a week, in my role as director of the CJFS CARES dementia respite program, I co-facilitate virtual support groups with Lise Grace (CARES Assistant Program Director) for family caregivers of people with dementia. CJFS initiated these support groups more than twenty years ago, before CARES existed. We offer these groups at no charge, and many of the caregivers who faithfully attend have no other connection to CJFS or CARES. Some don’t even live in Alabama.
Many – and probably most of them – would tell you that the support group is the most important part of their week. Lise and I recently talked about why this is the case. Lise brings a unique perspective to the group in that she went from attending a support group as a caregiver to facilitating one. For six years, she cared for her late husband, Dan, who had early onset Alzheimer’s and passed away in 2016. The first piece of advice Lise received after Dan’s diagnosis was to join the CJFS support group.
Many support group members, upon joining the group, express that they were relieved to find people who understood what they were going through. That was very much Lise’s experience. The isolation she was feeling was only adding to her stress, and the support group proved to be the answer. “For me, it was an absolute lifeline. It made me realize that I was not alone in my caregiving experience. Dementia presents in very different ways, but among caregivers, the similarities far outweigh the differences. We all become exhausted and overwhelmed, and feel guilty because we think we could be a better caregiver.” In our group, people are always saying to us that they’re disappointed in themselves because they lost their patience with their loved one. We repeatedly remind them that if you’re human, you’re going to lose your patience from time to time.
I asked her why she thought dementia caregivers in particular seek out support groups. She explained: “I cared for my father after he had a stroke, and one difference is that my dad was loving and grateful. We had a shared reality, great conversations, and he could participate in making decisions about his care. With Dan, and with dementia caregiving in general, you’re often making decisions on someone’s behalf, not even sure how they might feel about it because they’ve lost the ability to express that. They’re unlikely to express gratitude for what you do, and you may feel like you’re taking care of somebody who doesn’t even like or know you.”
I asked Lise if anything has surprised her about our support groups. “I might have been surprised, had it not been for my personal experience,” she said. “I expected participants to share thoughts that they wouldn’t say anywhere else. ‘I’m ready for this to be over’ is not uncommon to hear. Primarily, you want your loved one’s suffering to end, but you’re also aware of the toll that caregiving is taking on your own physical and mental health. A support group is a safe place to say that.”
Lise and I discussed the most common things we repeatedly tell our caregivers. We agreed that we often have to reassure them that they are doing a good job. We focus a lot on self-care, reminding them that their health and happiness matters too. We encourage them to pursue the things they enjoy as often as possible. We tell them never to say no to an offer of help from a friend or family member and to get paid help if possible. You lose a lot of yourself in the process of caring so intensely for someone else and it’s important to keep that to a minimum.
Finally, we reflected on how connections are made in the group and how friendships are formed as a result of these connections. It’s not uncommon in a single session for our members to support each other through their struggles and to share the happy moments that do occur in the life of a caregiver. We give each other permission to laugh even on the hard days and we support each other in a way only those going through a shared experience can do.
To learn more about the CJFS CARES dementia respite program, visit https://cjfsbham.org/our-mission/cjfs-cares-respite-program/. CJFS virtual support groups are offered free of charge, meeting each Monday at 3 pm and each Tuesday at 7 pm. Want to know more or schedule a visit to CARES? Contact Pam at firstname.lastname@example.org or 205.960.3411.