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Facing This Road Together, In Small Steps

Susan Frick | 27 May 2020

In his later years, my Grandpa was sick with cancer and had to drive, with my Grandmother who had Alzheimer's disease, from our place to their home. Though he felt ok when they left, he soon became ill and fatigued and the four-hour trip became overwhelming in his tired and hurting state. He later told the story that to make it home he broke the drive into parts by focusing on just getting to the next town. From there, he focused on the next town, and the next, and the next, until they were finally home.

Life in COVID-19 is like my Grandpa’s drive. The whole experience is overwhelming and exhausting. It’s hard to see the end and we don’t know how it is going to be to get there.

Life as a caregiver for someone with dementia has always felt this way but it seems to be even greater now. Caregivers who have their person at home might be stressed and feeling alone with a lack of resources and support. Caregivers who have their person placed might be overwhelmed from not being able to visit and worries about care. And, everyone is afraid of COVID-19, missing connection, routine, and the ability to interact without worry.

As a Dementia Support Group Leaders, we need to realize that right now our families, and really all of us, are living through a period of immense stress and grief which we cannot change, fix or make go away. Honestly, this has always been the case for Dementia Support Group Leaders but it is so painfully true now. Like Alzheimer’s disease, much of life with this virus is out of our control.

What we can do though, is think like my Grandpa. How can we help our families break this long road down into more manageable parts? How can we help them express and navigate a path which can appear overwhelming? How can we help them find themselves in this collective experience?

Even in times of social distancing, we as Dementia Support Group Leader need to create community. We need to have ways for people to express their worry, their concerns, and share their stories. Though it will not change the situation, giving space to share can ease a burden. We need to help break this long road into smaller moments and though some will be frustrating or scary, some will hopefully show accomplishment, joy, humor, or peace.

Right now, we cannot see the end of this journey with COVID-19 but we can get there together. The role of the Dementia Support Group leader is to not only be with our group members on this journey but also create the space for all our members to travel together. In doing so, they can help each other get to the next spot and the next and the next.

Susan Frick, MSW, LSW, is the Director of the Rush Alzheimer's Disease Center Without Warning program