Caregiver Voices: 'Even if You’re Exhausted, You Can Gain from Finding a Creative Outlet'

Nancy Carlson, the beloved Minnesota author of more than 60 children’s books, became an informal caregiver when her husband, Barry McCool, began showing symptoms of frontotemporal dementia. The degenerative disease can cause dramatic changes in personality, social interactions and other behaviors. Nancy cared for her husband – also her business manager – at home for two years before he moved into a nursing home. He passed away in late 2016.

Before being diagnosed, Barry’s illness led him to make business decisions that caused financial loss and forced the family to move. Nancy cared for Barry in an apartment that she describes as a less than ideal environment for someone with his disease while she continued to work. “I learned that I am a zillion times stronger than I imagined,” Nancy says. “I never knew that I could handle as much as I did.”

Support Group Provided Practical Tips

Nancy found advice and understanding through a support group for caregivers of people with frontotemporal dementia. Through the group, Nancy learned about therapeutic lying to help reduce her husband’s stress and anxiety, such as telling Barry she had called for repairs when she had really unplugged appliances to keep him safe. Group members also told Nancy about adult day programs, which allowed her to work while ensuring Barry was well cared for.

For Nancy, continuing to work was necessary both financially and as self-care. “I had a life,” she says. “I had to have a life so that I could make ends meet. If I was just taking care of him and not working, I don’t think I would have survived.”

Nancy exercised regularly at the gym and took up hiking. While some friends disappeared as Barry’s condition worsened, longtime friends of Barry “came out of the woodwork.” They would take him to lunch, for example, giving Nancy a break. “You really see what people are made of,” she says.

Doodle A Day for Caregiving Self-Care

Nancy continued to make art by creating a small drawing every day. She posted each image on her website to create the “Doodle A Day” project, which was on display at the Wilder Community Center for Aging and was featured during a Courageous Caregiving event on Feb. 13. “Sometimes you don’t know how you feel until you draw it or write it down,” she says. “Even if you’re exhausted, you can gain from finding a creative outlet.”

The images evoke whimsy, happiness, sadness and other feelings – fitting for the experience of caregiving. “There can be really joyful times,” Nancy says. “It’s not all drudgery. There’s also humor in it. You really feel love for the person.”

Pictured above: Artwork by Nancy Carlson