June 12, 2019
In the Midst of Dementia: Joy
By Lu Stanton León
Tuesdays at 6:15 a.m., Bob Nelson gets in his car and drives 120 miles from his home in Milwaukee to Chicago. There, he picks up his 91-year-old father-in-law, Charles Custer, and accompanies him to the rehearsal of Good Memories, a choir for people with early-stage dementia and their caregivers.
Anna Brothers of South Holland also spends an hour behind the wheel so she and her mother, Mary Blackwell, 88, have a chance to sing.
“My mom is worth it,” Brothers says with a laugh. “She says she still can’t sing, but she enjoys it.”
Every Tuesday, some 50 older people, their caregivers, and volunteers gather at Fourth Presbyterian Church in downtown Chicago to sing old songs and learn new ones in a program founded last year by Jonathan Miller, a professional musician, and his wife, Sandy Siegel Miller of Holy Nativity in Clarendon Hills, a clinical child psychologist who is a postulant for the diaconate in the Diocese of Chicago.
“It’s just a great group, very professional, great music,” says Nelson, 68, a retired high school teacher and construction worker. His father-in-law’s memory is fading, he says, but the loss is not yet debilitating. “Having me come down and doing this together, it’s great. He has a very good voice, and he understands music. I have never sung in my life. I just stumble through all the parts. It makes a big difference in both of our lives.”
It has made a big difference in the Millers’ lives as well.
“Do you have any idea what a privilege it is to be in the midst of that kind of love and beauty?” Jonathan Miller asks. “We’re giving people a place where they can be seen and heard in a way that is not negative. That is part of the sacredness of what we’re doing. Even when you have memory loss, you can feel joy and connect to people; you can feel in relationship. We have witnessed that. There’s a holy shimmer in the place.”
Bruce and Anne Hunt, both 82, were two of the first to join Good Memories Choir. Bruce, a retired college professor, holds an MDiv from McCormick Theological Seminary. His wife, Anne, was a pioneer in the field of food and nutrition and has co-authored numerous books on healthy eating. Three years ago, Anne was diagnosed with Alzheimer’s. Choir rehearsal remains a highlight of their week.
“The music really moves me,” Bruce says. “What we do to get started each Tuesday morning is to sing ‘Oh What a Beautiful Morning,’ and it just raises the roof when we do that. There’s a real spirit in the room, and there’s a real feeling of hope and excitement.”
There’s also a feeling of dignity and acceptance.
“I don’t want to go around with a sign that says Alzheimer’s on my forehead, but I don’t want to ignore that it is part of our life,” Anne says. “For me, the stigma is gone. I want anybody who will listen to me to know that I have Alzheimer’s, but I’m having the best time with this group of people who share this with us.
“All I know is that, at least for this period of time, I am still living a full and happy life,” she says. “Unlike a lot of diseases, this is not a disease where I have a lot of pain. I have anxiety about it, and there are some things I can’t do. But I feel much more confident about living life to the fullest. I think the choir has helped with that.”
Before starting the Good Memories Choir, the Millers founded Sounds Good!, a choral organization for adults 55 and older that now numbers more than 400 people in seven choirs across Chicagoland.
In 2018, they founded Good Memories using the model of the Giving Voice Initiative, an organization that has provided encouragement and start-up materials to more than 60 choruses worldwide for people with Alzheimer’s and their caregivers.
Brothers, 67, heard about the Good Memories Choir through a program for people with memory loss at Northwestern Hospital in Chicago. She and her mother, both retired teachers, had traveled the world together before Blackwell went into a memory care facility more than two years ago.
“My mother is very high functioning; she just has memory loss,” says Brothers, who owns a dessert catering business. “When the doctor tested her last year, her memory had stabilized. I attribute it to my taking her out and doing things with her, like the choir.”
Blackwell’s sense of humor is also intact. Asked if she likes the snacks served before choir practice, she replied, “My daughter must love them. She stole one of mine today.”
When seeking singers, the Millers focus on people with early-stage dementia who are living at home.
“We learned from our colleagues at Giving Voice that people who are early stage and living at home are the most socially isolated, because people are ashamed and tend to pull back and cocoon,” Jonathan says. “People say that, the day before the diagnosis, you’re fine. After the diagnosis, you’re a person with dementia and people won’t look you in the eye. This is a place where, for those two hours, it’s all about having fun together.”
According to the Alzheimer’s Association, 5.8 million Americans are living with Alzheimer’s disease, which is the most common form of dementia. That number is expected to skyrocket to almost 14 million by 2050.
While there is no known cure for dementia, research shows that listening to or singing songs can provide emotional and behavioral benefits for people living with the disease. Numerous studies—one of the most recent featured last year in The Journal of Prevention of Alzheimer’s Disease—have demonstrated that musical memories often are preserved in people with Alzheimer’s because key brain areas linked to musical memory are relatively undamaged by the disease.
“One of the ways to describe what we do is a cultural intervention for dementia,” Jonathan Miller says. “There is nothing pharmacological that has been successful in treating dementia, but there is a glimmer that perhaps music can help. Here, the music we choose for our people is mostly the music that they learned as a teenager or young adult, but during this 15-week session of rehearsals, we are also doing a brand new piece, and they are learning the music. We’re so afraid, as a culture, of memory loss that we don’t see the shades of gray.”
It was a year of grief and loss that led the Millers to found choirs for older adults and those with dementia.
In 2015, Sandy’s mother, Jonathan’s father and step- mother, and the family cat died within seven months. Then, at the end of the year, Jonathan lost his job in music publishing.
“After all the losses, both of us were reeling,” Sandy says. “I said, ‘If there is any lesson in this, it is that life is short and we should be doing what we love. I looked at our finances and said, ‘Why don’t you take some time and decide what you really want to do in this world?’” With Sandy’s encouragement, Jonathan decided in early 2016 to begin leading choirs for older adults, bringing to Chicago the model originally pioneered by a Maryland-based organization called Encore Creativity.
At the same time, Sandy was discerning a call to ordained ministry, and she and Jonathan started the first year of Education for Ministry at Church of the Holy Nativity in Clarendon Hills.
“When someone starts out in discernment to become ordained in the diaconate, there is a lot of talk about ministry,” Sandy says. “To tell you the truth, I wasn’t sure what my ministry would be.”
In November 2016, they attended a Giving Voice rehearsal day in Minneapolis, and the die was cast.
“That day in Minnesota somehow struck a chord with us,” Sandy says. “If there was a call to ministry, that was it. Now it’s like this fast-moving locomotive and we’re running behind it. We were so moved by the rehearsal day in Minneapolis. We were alternatively incredibly overcome with joy, and the next moment we were crying bittersweet tears. On the way home, Jonathan pulled out his laptop and we started running the numbers.”
It took two years to raise the initial resources, but they never looked back.
“Sandy and I have never felt this way before, where we were grabbed by the neck and shaken,” Jonathan says. “It was not optional. It was, ‘You are going to do it.’ It’s one of those decisions where there is no choice. It was, ‘This needs to be done.’ It was not a case of who or when or how.”
During Good Memories’ rehearsals, fears of failing health and fading memories yield to jubilant singing, great music and friendship. There’s no audition to get in; no singing experience required. Anyone is welcome who is living with dementia and can attend structured weekly rehearsals.
Lynn Clark, a volunteer singer who manages the check-in table, travels 30 miles from Downers Grove. She says, “One thing I love about the choir is that it is purposeful. Some choirs are sing-along groups. Jonathan brings this incredible skill, and he’s demanding. The songs are not easy. We do this challenging music, and the expectation is that we’ll learn to do it. Some of the people, even the people with memory loss, have had a lot of musical experience. And some of their care partners don’t have any. So the choir is a great leveler.”
In addition to the opportunity to spend time with his son-in-law, Custer values both the quality of the music and the opportunity to make a distinctive contribution. A retired lawyer who lives in an independent retirement community, he sings bass.
“I guess one of the things I particularly like is the harmony that I can put into a piece, into a song, from beneath the bottom of most people’s voices,” he says. “I enjoy it partly because I guess there aren’t many competitors. When I’m singing, people know I’m doing it!”
The choir has been a confidence booster for the Hunts, neither of whom has sung with a group since high school.
“I like the social aspect of it; I’m enjoying meeting these people,” Anne says. “It seems that whoever you sit next to, you work together to make sure you’re singing the right notes. I don’t know anything about reading music. I’m learning some new skills and developing a confidence to sing along with the choir. The fact that I’m learning something new, it just kind of revs up my spirit.”
Clark certainly didn’t need another volunteer choral opportunity—she sings in four choirs—but she was drawn to Good Memories.
“In training we received before the choir started, Jonathan shared with us four things that he learned happen when people are diagnosed with Alzheimer’s: others tend to stop calling them by name, looking them in the eye, touching them, or expecting anything of them. This is a turnaround of that. I love the choir because we avoid the ‘them’ and ‘us’ dichotomy,” says Clark, who has a doctorate in clinical psychology. “In truth, for those members who have early stage dementia, it’s difficult to know who has it and who doesn’t.
“Maybe it’s a function of aging myself, but I’m struck by the fact that we are all vulnerable to loss, whether from Alzheimer’s or something else,” she says. “As we work together learning the music and refining our performance, it feels like we’re more alike than different ... I treasure that.”
(photos by Rob Hart)