Dealing With Mom's Dementia: A Son’s Journey

(This article previously appeared on Fierceforblackwomen.com.)

Todd Shurn braced his mother from behind, her arms resting 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’s 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. They’re less likely to be involved with personal care and more likely to pay for it.
 
Not Todd Shurn.

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He has a sister, but she has two children and lives in Atlanta — more than 700 miles from their family home in Benton Harbor, Mich. So, Shurn did it all with the help of an aide who relieved him when he went to work at Howard University as an associate professor in the School of Engineering.
 
In early 2011, Alice 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 disease.
 
Alice’s shuffled walk, balance problems and hunched posture are classic symptoms. Just before diagnosis, she developed orthostatic hypotension. Her blood pressure would plunge when she stood, causing her to fall — once into the family Christmas tree — or pass out.
 
The brain cell damage caused fewer memory problems than Alzheimer’s disease, 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,” notes 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, midway between Chicago and Detroit. His father, Joseph Shurn, rose from elementary school teacher to principal to interim superintendent.
 
For five decades, Alice played piano and organ for the senior choir at Union Memorial, where she also served as music director. Armed with a bachelor’s in music and master’s in elementary education, she taught second grade for 30 years and adult education for three years after retiring in 1965.
 
Shortly before his 81 birthday, Joseph told a close friend, “I am trying to die, but they won’t let me.” He was speaking about his children and his wife, who drove him to dialysis treatments until the day 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. It was also yet another signpost at the beginning of a dementia diagnosis. That was in June 2010.

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When his mother 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 anymore,” 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.” Scott adds: “Long-term care outside of the home or outside of their community was the last resort.”
 
Sixty-five percent of African Americans are more likely to be primary caregivers compared to Latinos (63 percent), whites (53 percent) or Asian Americans (48 percent), according to the National Alliance for Caregiving and AARP study.
 
While many black families have less access to resources, Scott says, they have stronger kinship networks for comfort, prayer or a helping hand to ease stress. Education also helps to reduce burnout, adds Scott, whose findings have been published 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 explains. “They have an idea about what’s coming.”

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Knowledge and time made a difference for Shurn as his mother’s primary caregiver. “I’m more confident now that I can take care of her than I was when she was in better condition,” he says.
 
Hospice Time
 
At the restaurant in early April, Shurn imagined at least a few more years with his 83-year-old mother. By June, everything had 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 passed away.
 
“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.”
 
“I don’t know what the future holds for me,” he says, almost in a stream of consciousness. “I’m not married. I don’t have any kids. What am I go to do for Christmas? I have no idea.”
 
“I took care of my mother. That’s what I did.”
 
What is clear are his feelings. “I miss her,” he said. “I have this incredible feeling of loss.”
 
Saying Goodbye
 
After his mother’s body is cremated, Shurn will travel with her remains to Benton Harbor, where the community will pay tribute to one of its pillars — just as it did for his father.
 
A tear streams down from the outer corner of his right eye as he shares funeral details and reflects on the “good years” with his mother.
 
Shurn stresses the importance of being flexible as a caregiver and to overcome any doubts about one’s abilities. If he could do it, he says, almost anyone can.
 
Although the prospect can be daunting, he also encourages 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 acknowledges. And lots of love.
 
Yanick Rice Lamb, who teaches journalism at Howard University, is co-founder of FierceforBlackWomen.com, which is partnering with TheRoot.com on this article. Lamb is a John A. Hartford/MetLife Foundation Journalism in Aging & Health Fellow, a project of New America Media and the Gerontological Society of America. She was also an Alzheimer’s Disease Fellow through the National Press Foundation.