Dealing With Dementia: A Son Tells His Story

With African-American women being more likely to care for elderly family members at home, Todd Shurn is a rarity: a man who became the primary caregiver when his mother, Alice Shurn, was diagnosed with dementia.

Todd Shurn and his mother, Alice Shurn, at her Delta Sigma Theta Sorority convention in 2013 Courtesy of Todd Shurn

Todd Shurn braced his mother from behind, allowing her arms to rest on his as they shuffled into a restaurant in lockstep. Alice Shurn was frail and a fall risk, but she had no chance of hitting the ceramic-tile floor. Her only son was determined to keep her safe. It was what he had done day after day for nearly four years.

It didn’t matter to Shurn that he was a single man in Washington, D.C. When friends tried to nudge him out for a night on the town, he usually declined.

“My life is dedicated to making her happy,” Shurn said of his mother. “The loss of my personal freedom—I’ve accepted that.”

Men like Shurn are not as rare as they used to be, but they still account for only a third of caregivers, according to a study by the National Alliance for Caregiving and AARP (pdf). They’re less likely to be involved with personal care and more likely to pay for it.

Not Todd Shurn.

He has a sister, but she has two children and lives in Atlanta—more than 700 miles from his mother’s home in Benton Harbor, Mich. So when their mother could no longer care for herself, Shurn took on the responsibility, with the help of an aide when he went to work at Howard University as an associate professor in the School of Engineering.

In early 2011, Alice Shurn was diagnosed with Lewy body dementia, the third-most-common form of dementia after Alzheimer’s disease and vascular dementia. Its brain changes are somewhat similar to those of Alzheimer’s and Parkinson’s diseases.

Alice Shurn’s shuffled walk, balance problems and hunched posture were classic symptoms. Just before diagnosis, she developed orthostatic hypotension. Her blood pressure would plunge, causing her to fall—once into the family Christmas tree—or pass out.

The brain-cell damage caused fewer memory problems than Alzheimer’s, which allowed her to reminisce with her son sometimes and maintain her love for piano playing at an adult-care center.

“It’s sort of like watching childhood development in reverse,” noted Dr. R. Scott Turner, director of the Memory Disorders Program at Georgetown University.

Life Before Dementia

Shurn, 53, says he grew up in a loving and fun home as the son of educators who were active in their Lake Michigan community, midpoint between Chicago and Detroit. His father, Joseph Shurn, rose from schoolteacher to interim superintendent.

For five decades, Alice Shurn played piano and organ at Union Memorial, where she also served as music director. Armed with a bachelor’s in music and a master’s in elementary education, she taught second grade for 30 years and adult education for three years after retiring in 1985.

Shortly before his 81st birthday, Joseph Shurn told a friend, “I am trying to die, but they won’t let me.” He was referring to his children and wife, who drove him to dialysis treatments until she forgot the location of the center. Her family called the police.

“She was sitting on the side of the road lost, so that was the end of her driving,” her son said. That was in June 2010. When she fell into the Christmas tree, Shurn said, “I’m like, ‘This is it.’” Over a month, doctors weaned her off the orthostatic-hypotension medication and diagnosed her with dementia.

“At that point, she couldn’t stay by herself,” said Shurn, whose father had died in October after battling cancer and kidney problems. “So I had to bite the bullet and say, ‘She’s going to come and stay with me.’ I’m a single guy. What do I know about taking care of a mother?”

Cathy Scott, an assistant professor of social work at the University of Tennessee in Knoxville, says, “African-American families care for their loved ones in the home at a much higher rate than Caucasians or other racial or ethnic groups.

“Long term, outside of the home or outside of their community, was the last resort,” she added.