In a bright yellow apartment tucked into an Andersonville retirement home, a small group of nonagenarians gathers for their biweekly Savvy Circle session. Seated on plush armchairs and a sofa covered in quilts, they talk about the weather and how they’re feeling. They create photo collages, perform light aerobics, and read copies of Reminisce, a magazine filled with vintage automobile ads, colorized black-and-white photos, and nostalgic stories about the 1950s. Sometimes they participate in sing-alongs.
“The last remaining function in the brain is the ability to appreciate music,” says Kirsten Riiber, the memory care director at Bethany Retirement Community. So she plays the hits they would’ve heard in their adolescence: Doris Day’s “Sentimental Journey” and Gene Autry’s “Don’t Fence Me In.” Later in the week, they’ll come back to the Savvy Circle to experience the same thing, or a variation of it, all over again. Many will not recognize they’ve been there before—or why they were there, or even who they are—because they have dementia.
The Diagnostic and Statistical Manual of Mental Disorders defines dementia as “an overall decline in intellectual function, including difficulties with language, simple calculations, planning and judgment, and motor skills as well as loss of memory.” It’s a set of symptoms that often manifests itself as Alzheimer’s, Parkinson’s, or vascular dementia. In simpler terms, it’s an erosion of the mind, and it affects more than five million Americans. By 2060, this number is expected to grow to 13.9 million.
“It’s a public health crisis,” says Riiber. “Because people are living longer, we’re just seeing it exponentially more than we used to. There isn’t a clear way to diagnose it. We know there isn’t a cure, but we have this segment of our population that can live with dementia for ten years. It’s just unprecedented in history.”
Since no one is yet able to reverse the process of aging, Riiber decided to teach people about dementia in the best way she knew how: a play. Since 2012, she’s been an ensemble member of the Neo-Futurists, an experimental theater group in Andersonville known for weaving the absurd and the personal into its performances. Four years ago, she teamed up with director Jen Ellison, an artistic associate with the Neo-Futurists who also teaches at Second City, DePaul, and Columbia College, and Alex Schwaninger, the former memory care director at Bethany, to create Tangles & Plaques, a play that demystifies dementia and memory care.
Named after the malfunctions in brain tissue thought to cause Alzheimer’s, Tangles & Plaques draws from Riiber’s experiences working at Bethany Retirement Community. It was originally developed as part of the Neo-Futurists’ Neo-Lab program and premiered in October 2017. Now, after a yearlong hiatus, it’s being remounted for a free, five-performance run next week at Theater on the Lake’s 2019 Chicago Summer Theater Festival.
The new run of Tangles & Plaques will also serve as the kickoff for a new workshop series called “Remembering Dementia.” Funded by a Creativity Connects grant from the National Endowment for the Arts, with exercises adapted from scenes in the play, the workshops aim to educate people—specifically millennials—about dementia, using a mixture of reminiscence therapy (a treatment that helps dementia patients remember their pasts), listening exercises, and improv. The series was piloted in the spring at the University of Chicago’s Logan Center for the Arts and will continue at college campuses and the Neo-Futurist Theater in the fall.
Dementia is a painful condition—painful for both those suffering and their loved ones—and it’s made worse when shrouded in secrecy. This is the philosophy that drives both the play and the workshop.
“It feels shameful,” Ellison says. “So much of it is wrapped up in how we care for the older generations in our culture.” Plagued by elder abuse, neglect, and a lack of institutional resources, the United States ranks far behind other wealthy countries in terms of eldercare. The goal of Tangles & Plaques is to help younger adults initiate these vital end-of-life conversations and prepare them for their inevitable role as a “generation of caretakers.”
Tangles & Plaques itself is a winding and expansive exploration of how memories make a life, combining 90s nostalgia, bittersweet tales from the nursing home, and improvisational storytelling that makes each performance entirely unique.
In a scene that simulates an immersion training exercise for eldercare workers, a Neo-Futurist ensemble member straps on oversize gloves and shoes, a pair of goggles smeared with Vaseline, and headphones tuned to garbled sounds of people shouting. He or she is directed to pull out a card table and open it up and then bring two chairs to the table—a simple task on its face but one that’s “nearly impossible” for those with dementia says Riiber.
“For the person entering the eldercare field, it’s to give them a sense of empathy and understanding of what they’re dealing with,” Riiber says. This immersion exercise will also appear in the workshop series.
In the third act of the play, story lines established in the beginning unravel in upsetting ways, with the narrative reflecting the “frightening and confusing and destructive” reality of dementia, says Ellison. But the ultimate goal isn’t to instill pessimism about the future.
“It’s a preparative hopefulness,” Ellison says. “Like, yes, we’re going to die, and some people will experience this very devastating illness. But we don’t have to make it so that it’s shameful, and we don’t have to make it so that our dignity is lost as a result.”
Riiber never thought she would end up working in eldercare. A theater major from Virginia, she decided to move to Chicago after a college field trip took her to see the Neo-Futurists’ show Too Much Light Makes the Baby Go Blind. She worked a variety of jobs, but none that she was as passionate about as theater. And then she stumbled on Bethany Retirement Community.
It was December 2012, and she was wandering around her neighborhood. Her brother had recently and unexpectedly passed away.
“I was depressed and alone and not really knowing how to grieve on my own,” she remembers. While passing by the retirement home across the street from where she lived, she looked inside and saw seniors seated around a piano singing Christmas carols. A Christmas tree and decorations completed the scene. “[It was] the warmest, most full-of-love thing I could have ever stumbled upon in a moment where I was experiencing so much darkness. I decided, ‘I’m going to go in there one day.'”
She started volunteering soon after, doing manicures every Tuesday morning. What happened was transformative. “I wanted to talk about this loss [of mine], but my friends couldn’t necessarily relate to me. But [the residents] could. They were like, ‘Oh yeah, I’ve lost everyone. All my family’s gone.’ It was so comforting to be able to connect about that.”
Three years into volunteering, Riiber started working as the activity director and later became the memory care director after Schwaninger left the organization.
Working with dementia patients, Riiber has come to learn a variety of lessons. Visitors should ask the patient how he or she is doing. They should speak loudly and clearly, in a deep voice, and tell stories with feeling, focusing on the present. They can look over memorabilia, like old uniforms and photographs, but they shouldn’t try to test the patient’s memory, and they shouldn’t feel hurt if the patient doesn’t remember a major life event or even a recent conversation. Most of all, they should continue to visit.
Riiber was surprised to notice parallels between her work in gerontology and theater. Arranging the room where she hosts the Savvy Circle was like designing a set, choosing the era-specific music reminded her of sound design, and the patience that it took to listen to the same story repeated multiple times felt like running a scene. These realizations inspired her to create Tangles & Plaques.
“This is like improv. I have to be present. I have to say yes. I cannot deny their reality. I have to join their reality.”
The realities of Riiber’s dementia patients, most of whom are in their mid-90s, can skew toward the bizarre. She tells the story of one resident whose dementia, as it progressed, has manifested itself as anxiety. Every time she’s dropped off in her room after Savvy Circle, she asks Riiber, “Why are the buildings flying around? How do they do that with the furniture and everything flying around and landing in the right place?”
At first Riiber didn’t understand what she meant, so she ignored the questions. But the next day, when the resident asked again, she was prepared.
“I sat with her and I tried to project with every ounce of my being a sense of calm—and I just started naming things in her room. ‘That’s your television and that’s the pillow that you made in Germany when you lived in Germany—do you remember living in Germany? That’s your bed and that’s the nice blanket that your daughter Brooke gave you for Christmas.’ And we just did that and then it would calm her down. It was naming things and grounding ourselves in the present reality.
“Every expression comes from a need,” Riiber continues. “It’s about listening for the need underlying their action, even if that behavior doesn’t make sense.” For many, that need can be as simple as not being alone. For example, she’s noticed many patients with dementia like to sit really close to the front door of rooms, in an effort to be noticed. “They want to be seen. They want to exist.”
Tangles & Plaques has “lived a much longer life than we thought, and that surprised me,” Riiber says. At the end of each performance, she asks members of the audience to raise their hands if they could relate to anything they’d just seen, and almost every hand goes up.
While the performances of Tangles & Plaques may not extend past the end of this year, Riiber and Ellison hope that both the play and workshop will inspire more people to seek information about dementia and find ways to connect in a meaningful way with their loved ones suffering from the disease. As for Riiber, she plans to continue working at the retirement home for as long as she can.
“I feel like I can’t leave because I just love it so much,” she says. “I hope that a creative person sees this show—or someone who has the same kind of skill sets [as me] and doesn’t know where to put them. I would love for them to join the field of eldercare because I think everyone will win in that scenario.” v
Tangles & Plaques
8/13-8/16: Tue-Wed 7 PM, Thu 2 and 7 PM, Fri 7 PM, Theater on the Lake, 2401 N. Lake Shore Dr, 312-414-1313, theateronthelake.com. F