Now that Charlie Miller is retired, you can find him belting out pop songs several times a month with UMKC students in a choir. Almost every night, he goes to a play or movie or checks out some live music. You see, Charlie has always loved music, but since he was diagnosed with Alzheimer’s 10 years ago, the arts have become even more important to him.
“It’s calming,” he said. “I used to have an incredible memory, and that part is not as prevalent anymore; it’s frustrating. So I get some tunes in and it makes (the troubles) go away.”
Charlie is one of the 5.4 million Americans living with Alzheimer’s, the brain-deteriorating disease responsible for loss of memory and, eventually, motor skills. Fortunately for Charlie, the progression of his disease is unusually (if there’s a “usual” prognosis for something so individualized) delayed. It could be genetics (his family has a history of delayed Alzheimer’s) or, as one new book by a local author highlights, it could actually be his love for the arts.
“Connecting in the Land of Dementia: Creative Activities to Explore Together,” by Kansas City author Deborah Shouse, gives readers step-by-step instructions on how to use the creative arts — music, painting, gardening, cooking and more — to connect with those affected by dementia. She even started a blog to share her findings.
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The idea for the book came from her time as a caregiver for her mother, who was diagnosed with dementia in the mid-1990s. Shouse saw her mother slowly change as the disease took over the strong, independent woman she used to know. As a former freelancer for The Star and essayist for several “Chicken Soup” books, she researched extensively to find ways to connect with her mother as the disease made her more distant.
It should have come as no surprise to her that her mother, a former artist, would respond to the creative arts.
“I would often sing to her, and what was interesting was that I always felt great after we sang together or I sang to her,” Shouse said. “It’s intuitive for the caregiver; you know what they like and you try to do it with them. … There are small, tender ways to invite someone who’s been an artist back into their work or just play with art.”
Beyond her own experience, one of Shouse’s first inspirations for her book came from Music and Memory, a program that loads music players with familiar songs from dementia patients’ youth. While people may not remember names or dates, familiar tunes usually spark a memory that brings them energy, she said. After interviewing dozens of experts, she found a similar response from other creative arts.
“The creative and imaginative parts of the brain live on after the rational parts are not quite as functional,” she said. “These activities are to do together; they benefit both people. … Of course, it’s bonding with the person you care about, but there are studies that show that music and art are for all of us.”
Her book shows how various families use the arts to treat dementia and then describes how others can adapt those methods for their own lives.
In one chapter, Shouse tells the story of Rex, who walked with a cane and said he was “too old to do anything.” But when dance instructors played “It Had to Be You,” he went from scowling in the corner of the room to waltzing across it “full of life.”
How to use that story? “Assess your partner’s ability to move,” Shouse writes. “Look into your partner’s eyes and hold out your hand as an invitation to dance,” and, of course, “thank your partner for the dance.”
Vicki Stoecklin didn’t consider herself a creative person before her dementia diagnosis, and she still doesn’t. But the days she spends in her Kansas City, North, home are increasingly filled with arts and crafts.
Each day, she completes two or three activities that challenge her brain — making jewelry, cards, wreaths — in hopes of delaying the progression of her disease. It gives her a feeling of purpose, she said, especially when she creates recipe cards and blankets for the local women’s shelter Sheffield Place.
“It makes you feel like your work is meaningful,” she said. “For some reason, I really liked the tedious stuff: the really fine painting, the tiny beads. I think it helps your concentration and helps you structure yourself. I don’t know how it works neurologically, but I know it helps.”
Stoecklin had been doing creative activities even before she read Shouse’s new book. (Shouse is close friends with both Stoecklin and the Millers through dementia support groups and her research presentations.) It has been four years since she was diagnosed with dementia and, from the beginning, she knew she had to work to preserve her cognitive skills.
“The more you give up, the faster the decline,” she said.
Her dementia is different from most; her cognitive functions are relatively unaffected, and she finds the disease affects her sleep more than anything else. She can still take care of her own finances and, to the casual observer, her dementia isn’t obvious.
But “even if you don’t see it, it’s still there,” Stoecklin’s daughter Jolie Kerr said. Stoecklin earned her master’s degree in the 1970s while also raising her kids. “My mom has always been very driven and very successful,” Kerr said. “This is the woman who’s not that old now who spends her days making jewelry or making cards. It’s hard to see that.”
Still, Stoecklin approaches every day with an optimism she credits to her strong faith.
“It’s OK that things are different,” she said.
Alzheimer’s is the most common form of dementia, accounting for 60 percent to 80 percent of all dementia cases, according to the Heart of America Chapter of the Alzheimer’s Association. The loss of memory and eventual inability to respond to conversations and environment is caused by plaques and tangles of protein in the brain, which block connections between brain cells and neurons. Those with Alzheimer’s most commonly live for eight years after diagnosis but can live as long as 20 years, depending on other factors.
The chapter offers online and in-person resources for those living with dementia and their loved ones. In September, the chapter hosted meet ups, musical jam sessions and art gallery visits for those with memory loss. September is World Alzheimer’s Awareness Month, and the chapter will close it out with a “Walk to End Alzheimer’s” on Sunday, Oct. 2, in Overland Park.
“Unfortunately, the biggest struggle is a stigma that still exists,” said communications director Juliette Bradley. “We’re kind of where cancer was 20 years ago; people didn’t say the word, but it’s not the death sentence it was back then.
“We’re trying to get people to understand it’s OK to say someone in your family has Alzheimer’s and to seek help,” she added. “No one should do it alone.”
It’s a lesson that the Millers and Stoecklin have taken to heart. For Charlie and his wife, Elizabeth, it’s a true partnership. The two met after Charlie had been diagnosed, and once Elizabeth found out, she said she was too much in love to consider any option besides staying with him.
Although Charlie stopped driving upon being diagnosed, “physically, I feel great,” he said. He gets frustrated when he can’t remember certain words and anxious in unfamiliar surroundings but, all in all, the disease hasn’t stopped the Millers from living their lives to the fullest.
While their interests are varied, there’s one common theme — when they volunteer, take walks to the park and prepare dinner, it’s all done as a team. Sometimes, the two simply relax at home, watching television and enjoying each other’s company. More often than not, Charlie will be the first to say when they’ve been sitting too long.
“If we’ve been around the house too much, he’ll say, ‘Can we go somewhere? Let’s just go out somewhere,’ ” Elizabeth said.
While both attend support groups as well as their dinner group, their strength mainly comes from each other. Although Elizabeth is skeptical, Charlie said he strongly believes his disease has progressed so slowly because of the diligent love of his wife.
“Every morning I wake up and think, ‘Good God, another day. Thank you,’ ” he said. “Thank God for Elizabeth.”
“I just don’t see anyone making it through this alone,” Elizabeth added. “For families of someone who’s been diagnosed, reach in. People take for granted how much they’re needed.”
But it doesn’t mean it has been easy. Charlie, who has “a million Facebook friends,” has seen relationships break from the strain of the disease. Stoecklin, who spends more time at home due to an unrelated immunodeficiency disorder, has lost touch with friends and felt judged by others.
“I’ve found there are people who have their own ideas about what dementia is or isn’t, and I just decided that they don’t need to know, because they come with their own preconceived notions.”
One of those is the idea that a dementia diagnosis is a death sentence, when the reality is far from it. For Charlie, who’s also participating in a drug trial while he’s using the creative arts to slow his disease, it’s maybe most important to appreciate every moment you’re given.
“If you want to make God laugh, tell him your plans,” he said. “There’s a strong possibility for a good life after diagnosis.
“Life is good. I’ve figured it out so far.”
Walk and read
▪ The Walk to End Alzheimer’s begins at 9:30 a.m. Sunday, Oct. 2. Registration for the 1- and 3-mile routes begins at 8 a.m. at Corporate Woods, 9401 Indian Creek Parkway, Building 40, in Overland Park. See Act.Alz.org or call 913-831-3888.
▪ Author Deborah Shouse will talk about her new book, “Connecting in the Land of Dementia: Creative Activities to Explore Together,” at 2 p.m. Sunday, Oct. 9, in the Truman Forum at the Plaza Branch of the Kansas City Public Library, 4801 Main St. In addition to a discussion and book signing, musical guests will perform and Michelle Niedens from the Heart of America Chapter of the Alzheimer’s Association will speak at the free event. See RainyDayBooks.com or RSVP at 816-701-3407.