Caregivers find solace, relief in creative escapes

For the past decade, Nancy Carlson has started her day at her computer, uploading her most recent sketch — kids chasing fireflies, squirrels in red lipstick, a full moon beaming a fond smile.

Thousands of fans and followers of the acclaimed Minnesota picture book author check out her digital Doodle a Day on her website and on Tumblr, Facebook and Twitter.

"I never set out to have it become this thing, but it was part of what kept me going and, at some point, I said I'd do a doodle a day for 10 years," said Carlson, 65, of Bloomington.

She's concluding the challenge she set for herself with a show and sale of her original doodles at the Bloomington Art Center, opening Nov. 16.

The exhibit documents a story of loss and endurance that Carlson couldn't have anticipated when she set the challenge for herself.

"The doodles became a way to explain to myself and the world what's going on in my life when everything was falling apart."

Amid the bunnies blowing dandelion fluff and cheery children picking blueberries, viewers also saw moody renderings of leafless birches, lakes under overcast skies and multiple versions of an expressionless man growing ever thinner. There are images of him with birds flying out of his head, a maze over his brain and, finally, angels hovering over his bedstand.

Barry McCool, Carlson's husband, business manager and father of their three children, was diagnosed with a frontotemporal degeneration in 2012 after several years of increasingly troubling personality changes associated with the form of early onset dementia.

McCool is one of the 50,000 Americans living with FTD, according to the Association for Frontotemporal Degeneration.

Unlike Alzheimer's, which attacks the brain's memory center, FTD attacks the parts of the frontal lobe that regulate executive function, judgment and social behavior.

Before his FTD was detected, McCool made a series of money mistakes that threw the family into financial ruin.

"When the whole world was collapsing, I drew straight from the heart," Carlson said. "Anyone could see the pain and the honesty."

As a children's book author, Carlson visited hundreds of schools and libraries, encouraging kids to draw, paint and color. Now she's extending her message about the importance of creativity to adults who, like her, become caregivers.

"You have to have a way to vent and express yourself when you're so lost looking after someone you love," she said. "Making something pretty or fun keeps you alive. It doesn't have to be writing or art. It can be music, baking. Don't worry about it being perfect. Who cares? No one even has to see it."

Research supports Carlson's belief in the therapeutic value of creativity for the growing number of Americans tending to loved ones.

According to the 2015 Caregiving in the U.S. Report, there are 40 million unpaid caregivers among us.

While November is National Family Caregivers month, the physical and emotional efforts necessary take a cumulative toll every month of the year.

"The literature confirms family caregivers have greater potential to develop a chronic disease or see existing ones worsen," said Dawn Simonson, executive director of the Metropolitan Area Agency on Aging.

"It's essential the caregiver focus on their own needs for health and wellness. Meaningful activities are stress relievers, whether it's the arts, exercise or a mindfulness practice."

The concept worked for Lorraine Teel. When her husband suffered a stroke 20 years ago, she took up textile arts, beading and quilting in the midst of her responsibilities caring for him.

"My mad crafting period was a way to escape," said Teel, 68. "I spent endless hours dying fabric as he became more distant."

Teel now believes her husband's disabling condition masked his dementia as it began its slow but irreversible course. Four years ago, his decline accelerated and so did the demands on her.

"That's when I stopped everything," Teel said. "It was like a creative light went out."

In June, shortly after their 50th anniversary, Teel's husband's complex medical needs prompted a move from their Minneapolis home to a nursing facility.

With her daily duties lessened, Teel is again puttering in her studio.

"It's relaxing to be in the zone that takes you out of the here and now. It's a relief to have my mojo back," she said.

"The thing about caregiving is, you don't realize what it takes from you; you're the proverbial frog in the boiling water."

The Alzheimer's Association's Minnesota-North Dakota chapter estimates 254,000 family and friends provide care to 94,000 Minnesotans with the irreversible disease.

Michael Egan counts himself among them; his father, Bill, died earlier this year, five years after his diagnosis.

"It's a tutorial in powerlessness, watching someone you love devoured by this disease," said Egan, 48, of Minnetonka.

Egan created a sculpture inspired by his father's Alzheimer's. Its origins stemmed from a potentially dangerous error his dad made as he became more confused.

"I lit the oven to roast a chicken and when I opened the door, there was red molten plastic dripping from the oven rack," said Egan. "He'd put a bowl in the wrong place."

Egan doesn't recall why he saved the ruined bowl, but it became a visual metaphor for dementia.

"In the pottery studio, I hand-built a large head, with masks of comedy and tragedy on either side. I attached the red plastic on top; the spindles look like a brain on fire," he said.

"It's a piece of art my dad accidentally co-created with me."

During the time that Egan helped care for his father, he used artistic expression to cope and connect.

A professional-actor-turned-accupuncturist, Egan returned to the stage for a lead role in a play. He wrote poetry and stoked his love of music, sharing beloved Irish tunes with his father as he transitioned from home to memory care.

"I remember pushing him to the window, letting him feel the sun on his face and watching him tap his foot," Egan said. "He climbed out long enough to give me a smile. He was saying thank you."

Two years ago, Nancy Carlson posted a doodle of a flock of birds superimposed on a rainbow beam, winging over the horizon to the sun.

"That was how I let people know that Barry died," she said. "Ten thousand people saw it that day."

Although she's still healing from her grief — and still digging out of her financial hole — Carlson is ready to take on new goals.

She's creating original drawings to accompany the Classical Kids Storytime on MPR's website and has a commission from the Minnesota Orchestra to illustrate its family holiday program.

She's also working on a graphic memoir about the last years of her marriage.

"I'll still put up some doodles, but I want to be offline more, without the pressure to finish a drawing and get up early to post it," she said.

"I'll always doodle because that's what I do, but I'd like to have the time to add in some knitting," she added, then laughed.

"Is that the most Minnesota thing you ever heard?"

This article was written with the support of a journalism fellowship from the Gerontological Society of America, Journalists Network on Generations and AARP.