The Surprising Way 1 Couple Is Helping Families and Patients Struggling With Alzheimer's
Discovering the common ground between improv and Alzheimer's gave actors Karen Stobbe and Mondy Carter a way to lighten things up for their family—and a larger purpose in helping others.
It’s May 2002. In a hotel ballroom in Indianapolis, Karen Stobbe strides onto the stage in front of 800 people—doctors, social workers, and administrators—who have gathered to hear her talk about communicating with people who have Alzheimer’s. But instead of heading to the podium, Karen makes a beeline for the edge of the stage. And with the energy and physicality of a seasoned actor, she jumps into the audience. The crowd gasps.
Pretty quickly Karen has audience members on their feet for a “mirroring” exercise with the strangers next to them. This is straight out of improv class—standing face-to-face, making eye contact, and following the other person’s moves. Karen reminds the audience to wave to their partners if they run into them at other conference events. “You may forget each other’s names, but you made a connection,” she says, “and that’s all you’re trying to do with people who have Alzheimer’s.”
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After rousing applause, the crowd shuffles out. A man comes up to Karen, hugs her, and hands her a note thanking her for the work that she’s doing. That note still hangs above Karen’s computer in the Black Mountain, North Carolina, home that she shares with her husband, actor Mondy Carter; their teenage daughter, Grace; and, until recently, Karen’s mother, Virginia, who has Alzheimer’s. (After a decade in Karen’s house, Virginia recently moved to a nearby group home.)
Necessity and Invention
Karen’s path to this passion began in 2000, when she was trying to learn the best way to communicate with her father, who was dying of Alzheimer’s. (Yes, the disease hit both of Karen’s parents.) After attending a disappointing workshop (a soulless PowerPoint presentation that left her feeling even more helpless), Karen did some research on her own and talked to a nurse friend. “I noticed right away that the guidelines for caring for people with Alzheimer’s had a lot in common with the tenets of improv,” she says. Mondy agreed. The gist of both: Be positive. Don’t argue. Say yes rather than no. And go with the flow.
Karen and Mondy began a coaching consultancy based on applying the rules of improv to being “in the moment” with people who have Alzheimer’s, and now they give talks all over the world—at nursing homes, in intimate family settings, and before vast rooms of medical professionals. The couple gave a TEDMED talk on the subject in Palm Springs, California, in 2015, and their site, in-themoment.net, offers a free training guide for families. Karen and Mondy also regularly perform Sometimes Ya Gotta Laugh, a two-person show that they wrote about caregiving and Alzheimer’s.
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Finding The Flow
Virginia, Karen’s mom, was diagnosed soon after her husband of 56 years passed away, in 2000. For a while, Virginia lived with Karen’s sister in St. Louis, and then, in 2006, she came to live with Karen, Mondy, and Grace. That transition was tough for Virginia. “She felt discarded and hurt,” says Karen, who also struggled. Her mom, whose demeanor was changing as her symptoms increased, could be short with her, and the two would end up arguing.
Mondy had an easier time. “He’s a ‘glass half-full’ type,” says Karen, “while I’m a ‘glass half-empty, cracked, and spilling all over the floor’ type.” Mondy found it easy to improvise with Virginia—follow her lead and act as part of her world. Says Mondy, “Virginia laughs almost every time she sees me.” This is partly because she sometimes mistakes Mondy for her late husband. “I show up in various scenes in her life—I’m Forrest Gump-ing all over the place!” he says. If Mondy and Virginia are sit- ting on the porch and she thinks that they’re at her childhood home in West Virginia, “I’m right there with her in the cabin, looking out at the cornfields,” he says.
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Karen recalls the time that Virginia said she lived in the same town as gymnast Mary Lou Retton, and her granddaughter, Grace, corrected her: “I shot Grace a ‘let it go’ look, then she asked Virginia what Mary Lou was like.” Virginia described walking to the bus with Mary Lou and being in the same class. Says Karen, “If you can say, ‘Yes, and tell me more,’ you turn it into a conversation rather than an argument, and it makes everyone’s life easier.”
In improv—and in communicating with people who have Alzheimer’s—“arguing gets you nowhere,” says Karen. “People think that anger is one of the stages of this disease, but maybe it’s just frustration due to us not seeing things from [the other person’s] perspective.” Karen applies this to interactions with her mom all the time, and this has allowed her to learn a lot about Virginia’s child- hood (a time that she talks a lot about). “Improv allows me to step into [my mom’s] world,” says Karen. “Why should I expect her to join mine?”
Where The Heart Is
As anyone who loves someone with Alzheimer’s knows, “care isn’t about one person—it’s about everyone involved with that person,” says Karen. Laughter, acceptance, letting go—they have helped Karen’s whole family.
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“Virginia doesn’t understand anymore that I’m her daughter,” says Karen. “Sometimes I’m her sister, sometimes ‘the neighbor girl.’ But now when she sees me, she throws open her arms and says with a huge smile, ‘Hey! There’s that girl! I love you!’ And that’s all I ever really wanted.”