The Beautiful Stuff, Too
By Abby Nathanson, Director of Support Groups
### They’re totally free. “When I go on vacation, my brain just shuts off, I don’t think about my mom or the dementia at all,” a member of my support group recently said. She was trying to convince another group member to take a vacation, as he hadn’t been away in several years and the stress was taking its toll on his wellbeing. She was concerned about how he was coping. Other group members chimed in with similar experiences.
He said thank you, but didn’t make eye contact and continued to look dejected. Another member noticed his expression and knew him from over the years to be the kind of person unlikely to be able to “shut off” his brain and recognized that he probably couldn’t relate to that well-meaning suggestion.
She turned to him and gently said, “When I go on vacation, I don’t shut my brain off. I am still thinking about my mom and everything I must do. But at least I can think about beautiful stuff, too.”
Bingo. She saw his face, understood that he couldn’t turn off his brain, but found a way to help him see a benefit of going on vacation anyway. He turned to her, a more relaxed expression on his face when he smiled and said, “Thank you, that’s a good point, I hadn’t thought of it that way,” and promised to consider it.
That moment, which happens hundreds of times a month, in groups all over the city, demonstrates the power of an ongoing, in-person support group. Caregivers’ lives are filled with demands and stress, and often, people who want to care and help but don’t know how to put it into the right words. Even caregivers who are going through it too have different experiences, like in the scenario above.
Some of the group members felt comforted knowing that it was okay to stop thinking about the person they were caring for sometimes. Others felt comforted knowing that it was also okay to not be able to do that. It may seem obvious, but moments like those are profoundly important for many caregivers who struggle with guilt and finding a balance of self-care.
That’s the power of a group — one person’s experience didn’t fully resonate, but because the members know each other so well, another member could pick up on non-verbal cues and find another way to connect. The members of my support group have built the kind of connection and relationship that comes from years of showing up for each other, supporting each other, sharing with each other and seeing each other.
As humans, we have a deep-seated need to connect with other people. Societies are built around the idea that people with things in common can relate to each other and build intertwined lives. Our dementia caregiver support groups serve a similar function. Caregivers get what other caregivers go through. Even when they come from different parts of the world, work different kinds of jobs, have different family or financial situations, they have a lot in common. They know the stress, exhaustion and fear that comes with being a caregiver for someone with dementia, and in the groups, help each other through the process, many times over a period of years.
If you look at the support group, on the outside, they might not look like people who would normally connect on such a deep emotional level. Some parents are being cared for by 24-hour private aides, others by family or Medicaid homecare. Some people are retired; some are still working. Some have families who have been in the United States for centuries, others, just a few years or decades. Their parents speak four different languages. There’s a doctor, a city worker and a playwright. Some have siblings, partners and friends, others get their support mainly from the group.
But twice a month, every month, year after year, they all come together and share their experiences. Most have cried at some point and they’ve all laughed. They validate each other’s efforts to be a good son or daughter, a good caregiver, a good person. They hear each other through the difficult stuff — the anger and the guilt, the times they don’t know how they’ll manage, the fears about their own future. They nudge each other when they’re stuck in a perspective that doesn’t seem to work, and most importantly, celebrate each other’s accomplishments — whether that means finally writing another play, even though their mother will never get to see it, or setting a boundary with an overbearing sibling.
Sometimes the accomplishment is as simple and profound as taking the time to consider that adding the beautiful stuff might make taking a vacation worthwhile, even if they think about their mom the whole time. And that’s always worth celebrating.
Please visit out support group page here.