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. Older African Americans, especially women, have higher rates of dementia and more complications. This article is Part 1 of an occasional series that will examine such issues along with caregiving.
By Yanick Rice Lamb
Todd Shurn braces his mother from behind, her arms resting on his as they shuffle into a restaurant in lockstep. Alice Shurn is frail and a fall risk, but she has no chance of hitting the ceramic tile floor. Her only son is determined to keep her safe. It’s what he has done day after day for nearly four years.
It doesn’t matter to Shurn that he’s a single man in a vibrant city like Washington, D.C. When friends try to nudge him out of the three-bedroom house that he shares with his mother for a night on the town, he usually declines. His world orbits around his mother, and he’s OK with that. Their lives are in lockstep.
“My life is dedicated to making her happy,” Shurn says. “The loss of my personal freedom — I’ve accepted that. I can’t do anything.”
Men like Shurn are not as rare as they used to be, but they are still in the minority when it comes to caregiving. Only a third of caregivers are men, according to a study by the National Alliance for Caregiving and AARP. Men are less likely to be the main or only person in this role. They’re less likely to be involved with personal care and more likely to pay for it.
Not Todd Shurn.
He has a sister in Atlanta — more than 700 miles from their family home in Benton Harbor, Mich., and she has two children. So, Shurn does it all with the help of an aide who relieves him when he goes to work at Howard University, where he’s an associate professor in the Department of Systems and Computer Science.
He’s had to learn how to bathe his 83-year-old mother, brush and floss her teeth, feed her, clothe her and comb her hair into something more or less presentable. Today, her silver locks are hidden beneath a gray flapper’s hat with a matching wool flower on the side. Dressed in gray pants with a red-orange sweater over a white turtleneck, she smiles adoringly whenever she glances over at her son next to her in the booth.
In early 2011, Mrs. Shurn was diagnosed with Lewy body dementia, named for Dr. Frederick H. Lewy who discovered the abnormalities in how the brain processes the alpha-synuclein protein in the early 1900s. Dementia with Lewy bodies (DLB) is 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.
Mrs. Shurn’s brain has a buildup of protein deposits called Lewy bodies in nerve cells that control how she moves, how she thinks and what she remembers. Her 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 causes fewer memory problems than Alzheimer’s disease, allowing her to reminisce with her son sometimes and maintain her love for piano playing at an adult-care center that she visits on occasion. However, it affects her attentiveness and ability to reason, requiring Shurn to redirect his mother’s hands periodically from sprinkling sugar on the table. He reacts calmly with patience and smooth repetitive motions, like a parent who’s used to moving a child out of harm’s way or minimizing a mess. Every now and then, he says, “Don’t do that,” to no avail.
“It’s sort of like watching childhood development in reverse,” notes R. Scott Turner, M.D., Ph.D., director of the Memory Disorders Program at Georgetown University.
Life Before Dementia
Shurn 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 elementary school teacher to principal to interim superintendent. Along the way, the biology and chemistry teacher from St. Louis earned a doctorate in education. Outside the classroom, he worked to restore historic Jean Klock Park, served on the planning commission and advocated on behalf of the elderly.
His family moved to St. Louis in 1935 when he was about 6 years old, and he grew up in the Flats, next door to his childhood sweetheart’s first cousin. Her name was Alice Marie Herndon, born in 1930 at the height of the Great Depression in St. Joseph, Benton Harbor’s twin city across the St. Joseph River. They both grew up in Union Memorial AME Church, where they were married in 1955. They shared a passion for education and the community, which would rub off on their son.
For five decades, Mrs. Shurn 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 1985. She was also a charter sorority member of the local chapter of Delta Sigma Theta.
Shortly before his 81st birthday, Joseph Shurn 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 back and forth 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.
Mrs. Shurn began to pass out more often, at church or at home. Her conversations would end abruptly — beyond losing one’s train of thought or the forgetfulness common as people age. With each local hospitalization, her son became increasingly frustrated as he listened to her condition being attributed to dehydration or depression over and over again.
When she fell into the Christmas tree, Shurn said, “I’m like this is it.” He called a doctor at the University of Chicago Medical Center and drove his mother 100 miles for a week-long stay. She ended up back at the hospital in early January after another fall. 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?”
“I had no expectations. I had none. I didn’t know what this would be like.”
The University of Chicago recommended Johns Hopkins Hospital in Baltimore, where Mrs. Shurn’s new gerontologist pinpointed Lewy body dementia.
“When I first moved her to D.C.,” Shurn recalled, “I was like, ‘What am I going to do about day care, and what was I going to do about caregiving when I leave the house?’”
He found a circle of support that includes a cousin, a few friends from Michigan, a neighbor and nearby Howard colleagues. “They can provide relief in a pinch,” he said.
Shurn also discovered an adult day care center around the corner that he and his mother love. A bus picked her up and returned her home with an aide until he got off work. The arrangement was great — until his mother was kicked off the bus. She began having outbursts, refusing to get on or off the bus.
Classes and meetings on campus made it difficult to drop her off at the center at 10 a.m. and pick her up by 2 p.m. It became easier to just have the aide come to the house while he was at work.
The outbursts continued at home with screaming and loud, guttural sounds. She would empty out her closet onto the bed. Once she accidentally locked herself in the bedroom. Another time, her son opened the door to find her standing and “waving poop” at him. “There are a lot of those moments,” says Shurn, who learned to watch his mother like a hawk.
“It’s an exercise in being flexible, because you can’t have any set norm,” he says of caregiving. “Her condition is constantly changing so you have to change with it.”
Another change was setting regular bathroom breaks. “No matter how I feel, no matter what, every three hours I have to take her to the bathroom or I’m cleaning a mess. I’d love to just sleep through the night.”
Shurn admits to having cursed out of frustration — a temporary release valve that has made him feel more guilt than relief. What he feels more often is blessed to have spent his 53 years with his mother. He also finds joy in seeing her light up on their frequent trips to the family home in Benton Harbor and especially the summers there.
“The Lord lets her live for my benefit,” Shurn says. “I appreciate that every day and every experience that we have.”
“Even now, she has a great sense of humor,” he adds. “She cracks jokes. It’s a blessing.”
He likens these moments to a 40-year-old baseball pitcher who suddenly “throws a fast ball right down the middle,” or Muhammad Ali’s last fight when a few punches reminded his opponent that he still had the power to knock him onto the canvas.
“Although her state is much worse, there are times when she still can be crystal clear. She can get something out, and it’s like right on point, right in the moment. And you’re like, ‘Where did that come from?’”
“She understands, but she’s not able to respond like she used to,” he says turning toward her. “You do understand. Don’t you Mother?” She smiles and nods.
To keep her mind as sharp as possible and avoid lethargy, he encourages her gerontologist at Johns Hopkins to keep her medication to a minimum. “My thing is, can we do this with asparagus?”
“Essentially, my mother is healthy, so I don’t want to kill her with drugs,” he says. “She’s only taking the anti-depressant Serlin,” along with vitamins, potassium and other supplements. Shurn provides balanced meals with lots of fruits and vegetables.
TLC & African-American Caregivers
Despite the ups and downs and surprises, Todd Shurn displays the resilience and dedication that Cathy B. Scott has seen in her research and years of work with many African-American caregivers dealing with Alzheimer’s disease and other forms of dementia.
“African-American families care for their loved ones in the home at a much higher rate than Caucasian or other racial or ethnic groups,” says Scott, an assistant professor of social work at the University of Tennessee in Knoxville. “Long-term outside of the home or outside of their community was the last resort.”
Sixty-five percent 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 study by the National Alliance for Caregiving and AARP.
They are also more involved in helping with three or more activities of daily living (ADLs), such as bathing, dressing or feeding, the study found. And they take on more responsibilities such as grocery shopping, managing finances and giving medication.
While many black families have less access to resources, Scott says, they have stronger kinship networks among family, friends and church members to offer comfort, prayer or a helping hand to help ease stress. Besides support and respite care, a major factor in reducing burnout is education, she adds.
“The more knowledge that a caregiver has about the disease process, the lower their caregiver burden,” explains Scott, whose findings have been published in the Journal of Human Behavior in the Environment. “They’re understanding what they’re facing. They have an idea about what’s coming.”
Knowledge and time has 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.”
Also see, "Where to Turn: Resources for Dementia Caregivers" at the end of this article.
“My mother is headed out of here quickly,” Shurn reports in early June. “She is at Johns Hopkins, but they are saying hospice time.”
The hospital transfers Mrs. Shurn two miles west to the Joseph Richey Hospice. “I try to spend time with her during daylight,” says Shurn who lives an hour away in Northwest Washington, D.C. “When the sun is out, she’ll do her best.” Many people with dementia experience “sundowning” — behavioral or sleep problems after the sun goes down.
Shurn tries to wrap his brain around the idea that his mother is dying. “I thought we’d have a few more years together,” he says slowly. “I enjoy her. We’ve had fun.”
He not only wishes they had more time; he also wishes that she were at home in her own bedroom. “This is where it was meant to be, so this is where it will be,” he says of the hospice, which is named for an Episcopalian priest. “I’m just here, making her as comfortable as possible.”
“It’s a nice facility,” he acknowledges. The All Saints Sisters of the Poor co-founded the Joseph Richey Hospice 27 years ago to provide a home-like environment to manage the pain and symptoms of terminally ill patients for as long as necessary.
These days, Shurn spends most of his time in Baltimore, driving home to Washington only to sleep, shower and change clothes. “I don’t know how long this is going to last.”
“I don’t want to watch her die,” he admits. But he quickly adds, “I will not abandon her.”
It’s June 12, 2014.
An hour after his mother’s death, Shurn reveals that he missed her transition by 15 minutes. “I’m next to her,” he says by phone. “I’m still holding her hand. They told me to take my time.”
He feels a little mixed about not being there after spending so much time with his mother, but finds some comfort in hearing what he already knows — how hard it is to predict the precise moment of death. “I’m OK with it,” he says with a sense of resignation. “I’m not beating myself up about that.”
It’s June 25, 2014. Mrs. Shurn spent 13 days at the hospice facility. Johns Hopkins had discontinued fluids just before her transfer. “Once they did that,” Shurn says, “it was a death sentence.” However, palliative care physicians say that continuing to give a dying person food or drink can actually hasten their death if anything enters the lungs, causing respiratory complications. At the same time, they note, the patient is not being starved to death.
Shurn ponders over the phrase “actively dying” — words that loved ones don’t really want to hear, but that tell them the amorphous “end” is really real and really near. “I had never heard that term before. I was like, ‘Oh, wow. OK.’’’
“Actively dying,” he says again. “That really helped me out. Then I understood what I was dealing with.”
The night before his mother died, he noticed how skinny she had become. “She was so weak,” he recalled. “She was conscious. She was in this in-between state.”
Shurn is also in an in-between state.
“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 going 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,” Shurn says, still holding his mother’s hand by her bedside at the hospice center. “I have this incredible feeling of loss.”
Shurn makes arrangements to have his mother’s body cremated. He will travel with her remains to Benton Harbor for a memorial service, where the community will pay tribute to one of its pillars just as it did for his father.
It’s less than a week after Mrs. Shurn’s death, and four days before her burial at Crystal Springs Cemetery, where she will rest in peace next to her husband. A tear streams down from the outer corner of her son’s right eye as he shares funeral details and reflects on the many “good years” with his mother. He’s wearing black pants and a gray shirt so pale that it’s almost white.
“My life didn’t change,” he said. “As my mother changed, I adjusted.” If she couldn’t eat something, he changed his diet, too. His refrigerator and cabinets are still full of food that reflected her tastes and nutritional needs.
Shurn stresses the importance of being flexible as a caregiver and to overcome any doubts or apprehension about one’s abilities. If he could do it, almost anyone can, he says, even if it means stepping outside one’s comfort zone. Sons can take care of mothers, and daughters can take care of fathers. And 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 in place.
“It’s been a challenge that requires patience and commitment,” he acknowledges. And lots of love.
Understanding Dementia: 5 Top Types
Changes in the brain can cause dementia, severely impairing mental abilities including memory, movement, reasoning and thoughts. African-American women and men are two to three times more likely to develop dementia than white Americans.
Sometimes doctors make a general dementia diagnosis, since it can be difficult to pinpoint a specific type and they can overlap. Although Alzheimer’s disease is the most common type, dementia comes in many forms, as described below by the Alzheimer’s Association. Here are the top five:
- Alzheimer’s disease accounts for up to 80 percent of dementia. Symptoms can begin long before it has been recognized. Early signs can include depression, apathy and difficulty remembering names or recent activities. It can progress to impaired judgment, movement or swallowing; behavioral changes; and disorientation. Click here to see an interactive tour on how it affects the brain.
- Blockages in blood vessels and other brain injuries can result in vascular dementia. Accounting for 10 percent of dementia cases, this form has also been known as post-stroke dementia. A person showing early signs of vascular dementia might have problems making decisions, be disorganized or show changes in judgment. Memory loss can vary.
- Alice Shurn’s diagnosis was dementia with Lewy bodies, which is characterized by a buildup of protein deposits called Lewy bodies in nerve cells. It is named for Dr. Frederick H. Lewy, who in the early 1990s discovered the abnormalities in how the brain processes the alpha-synuclein protein. Its brain changes are somewhat similar to those of Alzheimer’s and Parkinson’s disease.
- People with diagnosed with mixed dementia often have some of the symptoms of the top three forms, which could mean more brain problems. It’s unknown how many people have mixed dementia, but experts speculate that the numbers are higher than previously thought, based on autopsies.
- When dementia develops in people with Parkinson’s disease, the symptoms are often similar to Alzheimer’s and Lewy body dementia. Beyond problems with movement, Parkinson’s disease dementia can affect one’s attention span, memory and judgment. About 1 million people, or 2 percent of those 65 and older, have Parkinson’s disease, and up to 80 percent of them develop dementia, according to the National Parkinson Foundation.
Where to Turn: Resources for Dementia Caregivers
- 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 ProPublica to Avoid Those With Problems