Community

3-24-25

I’ve been thinking a lot about community and connection recently. 

As the years have gone by since my husband’s first stroke, our community has simultaneously gotten smaller and grown. Our original community of co-workers, friends, even family, became more and more distant. I think sadly it’s inevitable for this to happen since we spend more time at home, and especially if people are uncomfortable with changes in the survivor.

But what has surprised me has been the new community that we have found ourselves a part of. My husband started attending an adult day center in our community in the fall of 2019, just months before the lockdown. When they had to shut down, the center began Zoom programming. Over the next year and a half, that community remained strong, although in a different way, and I got to know the participants too. When the center reopened, every day when I would pick up my husband, one of the participants or staff would ask me how I was, how school was going, etc. Somehow the staff managed to get my husband to pick up his camera for the first time in years because they know that despite his strokes, he remains an incredibly talented photographer, who should still be sharing his talent. The social workers have been invaluable resources for me as I have navigated insurance challenges, caregiver stress, and figuring out respite caregivers so I could take some time away. It has become our extended family, and I know how blessed we are that our community has this incredible program. 

About two years ago, I decided I needed to find other people who could understand what life was like now as a caregiver of a stroke survivor. My husband and I went to Stroke Camp, sponsored by United Stroke Alliance (https://unitedstrokealliance.org/programs/about), where we spent a weekend with survivors and caregivers. Everyone was accepted regardless of deficits or challenges, and we appreciated and celebrated the new life we were all part of. It was a turning point for me, and I met several caregivers that I am still in regular contact with. 

This led to looking for and finding other support groups that are for caregivers. My husband and I have been part of a stroke support group through our hospital since the first stroke. We have learned so much and connected with wonderful people and resources. But there are times that a caregiver needs a group of other caregivers, to freely and honestly discuss challenges that would be hard to talk about in front of the survivors. This has led me to support groups in New York and Oregon, and because we've never had one here, we’ll be starting a stroke caregiver support group in Vermont in May!

I needed to look for these connections and build my caregiver community. I know caregivers around the country now, and over the last sevearl weeks while my husband was sick and has been in rehab, this group of people have been checking in on me consistently, even though we’ve never actually been in the same room together. 

The goal with our Vermont stroke caregiver support group will be to continue to expand that community, this time in the same room. When I think back to the first days and months after my husband’s stroke, I wish there would have been a caregiver that I could have talked to - shared fears, asked questions, cried with. A caregiver "mentor" that would have been a sounding board and offered support. One of my dreams is to start this kind of program at our hospital and that hospitals around the country would adopt this model. 

So if you are a caregiver who wants to connect, whether you’re just starting out or have been doing this for a while, please reach out to me. Connect with others and build your community. It truly makes a difference.