It’s an overcast Saturday morning in Little Rock as several hundred Arkansans – 15 of them wearing t-shirts emblazoned with "Team Memaw" – start their Walk to End Alzheimer’s sponsored by the Alzheimer’s Association.
Memaw is Pat Swaffar, 82, a retired home economics teacher and then a school board member from Quitman who now lives at a Heber Springs rehabilitation center. She did not attend the walk.
Pat always has had a bubbly personality. A widow since her husband, James, passed away in 1990, she sang in church and baked legendary German chocolate cakes.
But then she began disengaging from favorite activities, telephoning at odd hours, and repeating herself in conversation. She was diagnosed about five years ago but lived independently for a while with a lot of help from her family. Eventually, her daughter, Sharron, and her husband decided to disconnect the stove. No more German chocolate cakes.
After a rough summer, Pat is in a better place now that she’s living at the Heber Springs facility. Although she has no short-term memory and will forget an encounter moments after it occurs, she’s kind and cheerful and still tells stories from the old days.
Sharron, her only child, visits her almost every day and takes her out for church and to her favorite restaurants, but she’s steeling herself for when those activities no longer happen. Walking with the rest of Team Memaw last weekend, her voice tightened a couple of times as she talked about her mother, but her emotions remained under control.
They have to be. The grief that comes with losing her mother to Alzheimer’s also comes with other feelings. When Sharron and her husband took Pat’s car away, she accused them of stealing it. That kind of personality about-face is typical of Alzheimer’s patients, but it still hurt. There’s guilt, too, every time Pat asks to go home or to see her dog, Chip, who now lives with Sharron’s oldest daughter, Keely Mullinicks. When I asked Sharron what kind of joy comes from a time like this, she repeated the word to herself and then paused to think. "It makes you appreciate life and appreciate your family," she finally said.
Team Memaw was the idea of Karly Kasbohm, Sharon’s other daughter. Karly and Keely grew up six miles from their grandmother’s house and saw her every day after school and on Sundays after church. Karly thought it might be good to walk with her mom, just the two of them, and raise a couple of hundred bucks; instead, the effort grew to include family and friends and raised $1,700.
Together with other teams, they helped Little Rock’s Walk to End Alzheimer’s collect about $40,000. Co-chair Tracy Crane of Pleasant Valley Nursing and Rehab said that is not much money in the big scheme of things, though organizers hope to double that amount next year. More important was the chance to remind all of these families that they are not alone.
In fact, they are very much not alone. According to the National Institutes of Health, as many as 5.1 million Americans have the disease. It’s the nation’s sixth leading cause of death and the only one in the top 10 that can’t be prevented, cured or slowed. According to the Alzheimer’s Association, health care costs related to the disease this year will total $200 billion.
That makes Alzheimer’s not just a human tragedy but a national threat, especially as the baby boomers age. Alzheimer’s-related health care costs are expected to rise to $1.1 trillion by 2050 – equal to about half of all the revenues the federal government will collect this year. Meanwhile, Alzheimer’s drains the economy in other ways. Sharron is able to do her job as a literacy coach at Quitman High School, but her attention is rightly divided between her responsibilities there and her concern for her mother. I don’t see how she could manage a small business right now.
We can’t afford this disease. Hundreds of billions of dollars are being spent to accomplish little more than to keep patients alive and comfortable, and that number will rise each year. Meanwhile, the toll on families is incalculable. The country should make ending Alzheimer’s an urgent national priority as a moral obligation and an act of fiscal self-defense.
That’s the big picture. Surprisingly, given all she’s dealing with, Sharron told me she’s thought about that, though of course she can’t do much about it. Like millions of Americans, she’s got enough to worry about taking care of her mother and finding joy wherever she can.
Thank goodness she’s got a team.
Steve Brawner is an independent journalist in Arkansas. His blog — Independent Arkansas — is linked at arkansasnews.com. His e-mail address is firstname.lastname@example.org