Dementia subject of new play coming to Anamosa stage

ANAMOSA — Ronald Reagan, Margaret Thatcher, Rosa Parks, Pauline “Dear Abby” Phillips, director Otto Preminger, Robin Williams, actor Eddie Albert from “Green Acres,” Charles Bronson, Glen Campbell, composer Aaron Copland, Rita Hayworth, Charlton Heston.

These are just a few of the famous people the Brevard Alzheimer’s Foundation lists as having had dementia. The various types of degenerative brain diseases don’t see marquee lights, fame or fortune. They indiscriminately rob people of their memories and abilities to function, spiraling toward death.

As the cast of “Lost Memories” has discovered, most know someone whose life has been touched or ended by some form of dementia. And according to the Alzheimer’s Association, they are not alone, citing that “an estimated 6.5 million Americans age 65 and older are living with Alzheimer's in 2022.”

“You are not alone” is the driving message behind “Lost Memories,” a new play by Shawn Carr of Cascade, premiering Aug. 5 to 14 at Starlighters II Theatre in Anamosa. Memory care specialists will conduct talkback sessions after each performance.

It’s the story of a family in a rural Iowa town, not unlike where Carr, now 54, grew up. After death strikes the patriarch, other family members, friends and neighbors begin to notice one person exhibiting actions that transcend forgetfulness. When one memory slip proved especially dangerous, they are jolted into facing a reality that can no longer be ignored.

The script didn’t come together overnight. It began as a whim in 2015, when Carr jokingly said he would write a play so he could play the son to a mother played by longtime Starlighters’ volunteer Virginia Danielson.

But with a family friend’s recent Alzheimer’s diagnosis, Carr decided to explore that subject.

“I wanted some realism in the play,” he said, adding that he “first put pen to paper” on Dec. 4, 2016, and after three years of writing, rewriting and taking cues from educators and friends to whom he showed the script, he was ready to pitch the play for production.

Carr said Starlighters’ passed on it several times, beginning in 2018, since they normally don’t stage original scripts. He credited Janith Cratsenberg with intervening on the show’s behalf, and after theater officials heard all the plans for talkbacks, and saw the work that went into the script, they agreed to let him stage it this month — initially for one weekend, then expanding it to two weekends.

Through the internet, Carr found Teepa Snow, owner of Positive Approach to Care, a worldwide dementia care organization based in the North Carolina. He sent her the play, and in response, she recorded a video that will be played before each performance. He also attended her seminar in Wisconsin, and was thrilled that much of what she talked about already was in his script.

Carr, who also is directing the show, drew from people he has known and from extensive research to create the various characters, their relationships, scenarios, actions and reactions.

“Everybody knows somebody that has been affected by dementia,” Carr said. “There’s 80 to 90 different forms of it. … And of course, this is just one family’s take on the subject. Everybody deals with it differently, I’m sure. So I wanted to show the little bit of anger at first, and then the acceptance of it, and then just trying to deal with it.”

Cast experiences

It’s a journey actor Kathleen Weiss of Cedar Rapids walked with her father, who suffered from Dementia with Lewy bodies, also known as Lewy body dementia. He died June 28, 2013, at age 87. Comedian Robin Williams was exhibiting signs of this disease, but it wasn’t diagnosed until after his death by suicide in 2014 at age 63.

“That was before people really, I guess, understood dementia and Alzheimer’s, and there weren’t the support groups that there are now,” said Weiss, 67, who plays widowed matriarch Phyllis Delaney. “So it was really rough, because I did a lot of research online to see what’s going on and what can we do? Is there anything we can do?

“I’m really happy that they’ve made the strides that they’ve made in the last several years,” she said, “that there are places you can go where the people are trained and know how to help someone.”

She called her father’s disease “devastating,” as she saw her sweet dad hallucinating that someone was trying to hurt him, and fearful of people he didn’t recognize and not understanding what was happening around him.

“It totally changes people’s personalities,” she said. “Toward the end, because he was scared all the time, it just changed so dramatically.”

Walking beside her in life and onstage is her husband, Steve Weiss, 73, a familiar face on the Eastern Iowa theater scene, who plays family friend Rick Johnson.

“We’ve been lucky enough to do quite a few shows together,” he said. “Working with Kathleen is incredible. I’m having the time of my life.”

But the subject matter isn’t easy. Front of mind remains the difficult times they both witnessed during his father-in-law’s decline, and all the research Kathleen did that was shrugged off by her father’s caregivers.

“The type of dementia that he had was not being looked at properly,” Steve said. “ … The doctors and nurses would not accept that Kathleen was doing the research and that she saw — because we spent a lot of time with Dad — that she saw these things. Nobody would believe her.”

Being there for each other during play practice has been crucial for the couple, as they work through the memories this script brings up.

“It’s helped me immensely,” Kathleen said. “We help each other come down from it, and relax (after rehearsals).”

She added that the entire cast has been “so supportive,” as well.

“It’s really a family,” she said. “We do lots of hugging — lots of hug therapy — crying. … ”We’ve gotten a lot closer and helped each other deal with all the emotions and everything. … And even backstage, they’ll be just hugging, touching. We’re here for everybody.“

The subject matter also resonates personally with Robert Kurt, 52, of Coggon, another principal actor who plays Phyllis’ son, Jack Hanley. In real life, Kurt has an aunt and uncle in various stages of dementia.

He said he became involved with the play for several factors: “This script, the story, the fact that it was locally written, and it’s well written. I love the way we tell the story, and have an ending that makes you walk away thinking. It’s not like this depressing ending.”

As with Kathleen and Steve Weiss, Kurt said the play helps him process the reality of dementia affecting his relatives.

“I like telling the story, because I think there is more there,” he said. “Certainly, I always think about it in my own life. Will I have it? What will this be like?

“But telling the story, I think is what is important,” Kurt added, “and that’s what I love about the show. We’re telling a story. Hopefully somebody recognizes that, and when you leave here, you think about your family and wanting to enjoy them because of the moment you’re in, versus taking it for granted. Two, three years down the road, what could be different?”

“Ultimately,” Kathleen Weiss said, “I hope what people get from this show is that family, family support, love — that’s the best thing you can do for someone that's going through this.”

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