Dealing With Dementia: A Son Tells His Story

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…

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.

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It didnโ€™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.

โ€œMy life is dedicated to making her happy,โ€ Shurn said of his mother. โ€œThe loss of my personal freedomโ€”Iโ€™ve accepted that.โ€

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 AARPย (pdf). Theyโ€™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 Atlantaโ€”more than 700 miles from his motherโ€™s home in Benton Harbor, Mich. So when their mother could no longer care for herself,ย 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 Alzheimerโ€™s disease and vascular dementia. Its brain changes are somewhat similar to those of Alzheimerโ€™s and Parkinsonโ€™s diseases.

Alice Shurnโ€™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 fallโ€”once into the family Christmas treeโ€”or pass out.

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

โ€œItโ€™s sort of like watching childhood development in reverse,โ€ 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 bachelorโ€™s in music and a masterโ€™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, โ€œI am trying to die, but they wonโ€™t let me.โ€ 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.

โ€œShe was sitting on the side of the road lost, so that was the end of her driving,โ€ her son said. That was in June 2010. When she fell into the Christmas tree, Shurn said, โ€œIโ€™m like, โ€˜This is it.โ€™โ€ Over a month, doctors weaned her off the orthostatic-hypotensionย medication and diagnosed her with dementia.

โ€œAt that point, she couldnโ€™t stay by herself,โ€ said Shurn, whose father had died in October after battling cancer and kidney problems. โ€œSo I had to bite the bullet and say, โ€˜Sheโ€™s going to come and stay with me.โ€™ Iโ€™m a single guy. What do I know about taking care of a mother?โ€

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

โ€œLong term, outside of the home or outside of their community, was the last resort,โ€ she added.

Sixty-five percent of African Americans are more likely to be primary caregivers compared with Latinos (63 percent), whites (53 percent) or Asian Americans (48 percent), according to the caregiving studyย (pdf).

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, adds Scott, whose findings appeared in the Journal of Human Behavior in the Environment.

โ€œThe more knowledge that a caregiver has about the disease process, the lower their caregiver burden,โ€ she explained. โ€œThey have an idea about whatโ€™s coming.โ€

Knowledge and time made a difference for Shurn as his motherโ€™s caregiver: โ€œIโ€™m more confident now that I can take care of her than I was when she was in better condition.โ€

Hospice Time

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

Within two weeks, she had died.

โ€œIโ€™m still holding her hand,โ€ Shurn said by phone an hour after his motherโ€™s death at a Baltimore hospice center. โ€œThey told me to take my time.

โ€œI donโ€™t know what the future holds for me,โ€ he said, almost in a stream of consciousness. โ€œIโ€™m not married. I donโ€™t have any kids. What am I going to do for Christmas? I have no idea.

โ€œI took care of my mother,โ€ he said. โ€œThatโ€™s what I did.โ€

Whatโ€™s clear are his feelings. โ€œI miss her,โ€ he said. โ€œI have this incredible feeling of loss.โ€

Saying Goodbye

A tear streamed from the outer corner of Shurnโ€™s right eye as he shared cremation and funeral details, reflecting on the โ€œgood years.โ€ He traveled with his motherโ€™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 oneโ€™s abilities. If he could do it, almost anyone can, he says.

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.

โ€œItโ€™s been a challenge that requires patience and commitment,โ€ he acknowledged. And lots of love.

Yanick Rice Lamb, who teaches journalism at Howard University, is co-founder of FierceforBlackWomen.com, which is partnering with The Rootย 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 Alzheimerโ€™s Disease fellow through the National Press Foundation. Follow her on Twitter.

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