Dealing with dementia: An African-American son tells his story

24th November 2014 · 0 Comments

By Yanick Rice Lamb
Contributing Writer

(Special from The Root/New America Media) – 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.”

Unlikely Caregivers

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. 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 in Washington 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 R. Scott Turner, MD, PhD, director of the Memory Disorders Program at Georgetown University in Washington.

Life Before Dementia

Shurn, 53, said 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, said, “African-American families care for their loved ones in the home at a much higher rate than Caucasians or other racial or ethnic groups.”

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

Among African Americans, 65 percent are more likely to become primary caregivers compared with Latinos (63 percent), whites (53 percent) or Asian Americans (48 percent), according to the caregiving study.

While many Black families have less access to resources, Scott says, they have stronger kinship networks for comfort, prayer or helping hands to ease stress. Education also helps to reduce burnout, added Scott, whose findings appeared in the Journal of Human Behavior in the Environment.

“The more knowledge that a caregiver has about the disease process, the lower their caregiver burden,” she explained. “They have an idea about what’s coming.”

Knowledge and time made a difference for Shurn as his mother’s caregiver: “I’m more confident now that I can take care of her than I was when she was in better condition.”

Hospice Time

In early April, Shurn imagined at least a few more years with his 83-year-old mother. By June, everything changed. “My mother is headed out of here quickly,” Shurn reported. “She is at Johns Hopkins, but they are saying hospice time.”

Within two weeks, she had died.

“I’m still holding her hand,” Shurn said by phone an hour after his mother’s death at a Baltimore hospice center. “They told me to take my time.”

He continued almost in a stream of consciousness, “I don’t know what the future holds for me. I’m not married. I don’t have any kids. What am I going to do for Christmas? I have no idea.”

“I took care of my mother,” he said. “That’s what I did.”

What’s clear are his feelings. “I miss her,” he said. “I have this incredible feeling of loss.”

Saying Goodbye

A tear streamed from the outer corner of Shurn’s right eye as he shared cremation and funeral details, reflecting on the “good years.” He traveled with his mother’s remains to Benton Harbor, where the community paid tribute to one of its pillars, just as it did for his father.

Shurn stressed the importance of being flexible as a caregiver and overcoming any doubts about one’s abilities. If he could do it, almost anyone can, he said.

Although the prospect can be daunting, he also encouraged people to consider caring for those with cognitive impairments, if they have the right outlook and support systems.

“It’s been a challenge that requires patience and commitment,” he acknowledged. And lots of love.

Where to Turn for Help

Here are key resources to help families with a member who has dementia:

–The Alzheimer’s Association 24/7 Helpline: (800) 272-3900

– Alzheimer’s and Dementia Caregiver Center

– ARCH –The National Respite Locator Service

– “Because We Care” Forums, Black Women’s Agenda Inc. and AARP

– Community Resource Finder

– Elder Care Locator

– Family Caregiver Alliance

– National Alliance for Caregiving

– Nursing Home Compare and to ProPublica’s Nursing Home Inspect.