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Jefferson doctors, dementia patients, and caregivers explore memory and connection on stage

A collection of real stories explores the impact of loss and the power of love.

John Best, a neurology resident at the University of Pennsylvania, performs during a rehearsal for Tangles in Time at Thomas Jefferson University. He plans to work with dementia patients when finished training.
John Best, a neurology resident at the University of Pennsylvania, performs during a rehearsal for Tangles in Time at Thomas Jefferson University. He plans to work with dementia patients when finished training.Read moreJOSE F. MORENO / Staff Photographer

Even after months of interviews, editing sessions, and rehearsals, the amateur performers who tell their stories in Tangles in Time find themselves fighting tears as they practice.

It’s hard for everybody on stage — medical students, doctors, nurses, and caregivers — when Nora Dougherty has to watch her husband, bigger than life in video shot last Thanksgiving. Bill, who has Alzheimer’s disease, was still able to talk a little then, and his face glowed with delight as he played in a percussion group. The Philadelphia couple, both 76, joined this theatrical production together, but his disease progressed so quickly that he had to move to a memory care unit before audiences could see him in person. She now comes to rehearsals alone. “I’m very sad,” she said. “When I see the face he had there … a lot of the life has gone out.”

Then there’s Mike Szkaradnik, 62, and his wife, Mary Anne, 64, who has frontotemporal dementia. They can both still be on stage, but the Voorhees woman can’t speak and he knows it hurts her to watch film showing her own erratic behavior. A retired critical-care nurse, she knows her brain is broken. He wonders whether he’s doing the right thing by subjecting her to this, but he wants to share their devotion and do this thing together. “I love you and I want people to know I love you,” he tells her.

Kimberly Mellon, a newly minted nurse, has to follow them. She wells up every time she talks about her grandmother’s dementia and her own fears of inheriting the disease. “Everybody’s story you feel so connected to,” she said.

The multimedia production, a collaboration between Jefferson and Theater of Witness, will be presented Sept. 13 and 14 at Philadelphia Episcopal Cathedral in University City. It is a collection of personal stories that explore memory, culture, and truth pieced together with film and music. Anecdotal by nature, it has the feel of a sophisticated story slam. While the younger and older participants speak from wildly different perspectives, their stories meet at the intersection of loss and love, often addressing one of the essential psychological questions of both medicine and aging: How do we make the best of changes we didn’t choose and don’t like?

The Penn Memory Center also got involved with theater to help broaden awareness of dementia. It collaborated with singer Jonatha Brooke on My Mother Has 4 Noses and Opera Philadelphia on Sky on Swings.

Tangles in Time grew out of discussions between Jefferson, Theater of Witness founder Teya Sepinuck, who has a long history of turning trauma into theater, and ARTZ Philadelphia, which provides artistic experiences for people with dementia. The Pew Center for Arts and Heritage provided grant funding.

Jefferson’s interest was in providing students with experiences in the humanities that might deepen empathy and improve communication and observation skills, said Megan Voeller, director of humanities at Thomas Jefferson University. Some of the Tangles in Time participants came from a Jefferson course that pairs students with dementia patients and their caregivers. The hope is that medical professionals can better understand human challenges that can easily be missed in quick, clinical conversations.

Dementia seemed like a good topic, Voeller said, because “it’s such a common shared experience and something we’re not talking about collectively as much as we could be and should be as a society.”

When the idea was broached, Sepinuck had just finished working on a film, Moment to Moment, about a couple dealing with dementia. “This just felt like a really natural outgrowth,” she said. “It’s not enough that we tell people’s stories, but that we find the medicine in stories.”

Although her first theatrical project, in 1986, was about aging, she has spent years working with people touched by violence and trauma: prisoners, police, people on both sides of the strife in Northern Ireland. Tangles in Time is an examination of subtler issues that tear at relationships: immigration, language, lies, impossible expectations, and changes in the brain that slowly destroy the people we love. The “medicine” in these stories perhaps is that we have some power over how we respond. The caregivers in the production — medical and marital — have all tried to channel their pain into caring.

“I don’t know that I’ve been in a project that’s so bathed in love,” Sepinuck said.

She is 69 and has come through a life-threatening health crisis in the last year. “I think things feel more precious now,” she said. “Each moment feels more important. This is the time right now. … We get to decide. Are we going to be wise? Are we going to live in compassion? It’s a privilege to be old.”

Sepinuck, who trained as a counselor, wants to keep listening to people’s hard stories and sharing them as long as she can. “Walking with somebody through their wound is the most holy experience,” she said. “I think my job is to hold a mirror up to them so they can see their own strength and beauty and power.”

In a short interlude, the show’s musical composer, Jay Fluellen, a Philadelphia school teacher who has a family member with dementia, delivers what may be the production’s most powerful metaphor. He talks about writing music for pianos with broken keys, something he actually did with his father-in-law’s piano in Puerto Rico. “What I learned to do, map out the keys that work and write music just for them,” he says. “It’s possible to make beautiful music from an imperfect instrument.”

A panel discussion on the project will be held Monday, Sept. 16 from noon to 1 p.m. at Jefferson’s Eakins Lounge. The panel will include cast members, Teya Sepinuck, and health professionals from Jefferson and Penn Memory Center.

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