By Christie Nicholson
Article published in The Austin-American Statesman, Intelligencer Journal and other papers in the U.S.
A play about the early stages of Alzheimer’s, performed by people suffering from the disease, is part of a recent push to bring attention to this particularly scary time, when those in the early stages are acutely aware that they are losing their minds.
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The cue for John Carpenter to read his line came and went. He sat behind a desk, a stage prop, flipping through the script in front of him. The theater was silent. Audience members twitched in their seats.
“You can see I’m having problems,” he said. “I think it’s part of my Alzheimer’s.”
Everyone laughed. It was nearly impossible to tell if he had really forgotten his lines, or if his words were part of the script. Carpenter, 81, who acted professionally for 35 years before doctors told him he had Alzheimer’s, was in the premiere performance of “To Whom I May Concern,” a play about people suffering from dementia, performed by actors who also have Alzheimer’s.
Nearly 4.5 million Americans suffer from Alzheimer’s. While there is no shortage of literature and support for caregivers, little help exists for the person in the first stages of the disease. Lasting anywhere from two to eight years, this stage is considered the most frightening, when sufferers are still active, yet acutely aware that they are losing their memory.
“I’m not getting better,” Carpenter, who has had Alzheimer’s for five years, said in an interview after the play. “I keep thinking what next year’s going to be like, because I know I’m climbing into the trap now. I can feel it.”
The number of people with Alzheimer’s is on the rise. According to a study published in the Archives of Neurology, by 2050 16 million people in the United States are expected to suffer from the disease, and, according to a paper in The Lancet, nearly 90 million worldwide.
The primary reasons for the increase are simple demographics and a population that is living longer, said Dr. Norman Relkin, director of the Cornell Memory Disorders Program. As baby boomers age and live to be in their 80s and 90s, the incidence of Alzheimer’s will grow.
In the past, support was targeted to caregivers because the thinking had been that patients did not have the capacity to benefit from it, said Scott Roberts, assistant professor at the University of Michigan School of Public Health. But as more people suffer from the early stages of the disease, they are demanding more information and support for themselves.
Tracy Mobley, a 42-year-old nurse technician from Buffalo, Mo., knew something wasn’t right when she looked out her window one morning to see a strange animal in her yard. She asked her son to come and take a look. “But, Mom, you know who that is! That’s Daisy,” he said with a nervous laugh. “Our dog.”
Eventually she received a diagnosis of early-onset Alzheimer’s, a rare form of the disease that can strike people as early as their mid-30s.
People suffering from the initial stages of Alzheimer’s face problems in dealing with family and friends.
Mobley said her mother refused to believe she had Alzheimer’s. Her mother would even tell Mobley’s 12-year-old son, Austin, that Mobley was making it up. “He’d come home, crying and confused,” she said. “My mother’s denial caused so much stress I had to stop speaking with her.”
It’s a common problem because early dementia isn’t easily recognizable. It doesn’t change one’s physical appearance the way cancer or osteoporosis might, Mobley said.
Then there are others who accept the diagnosis, but take it too far.
“Friends shut me out or just speak to my husband, and if they do talk with me, they do it real soft like I’m sick,” said Kris Bakowski, a 51-year-old mother and retired theater director from Athens, Ga., who has had Alzheimer’s for more than four years. “I’m treated like a nonperson.”
When Peter and Judy Hebert of Marin County, Calif., received the news that Mr. Hebert, 67, had Alzheimer’s, they were stunned. The neurologist told them abruptly: “If you want to travel, better do it now. And when he no longer knows who you are, think about putting him in a home.”
“I burst into tears,” Ms. Hebert said. The doctor then handed her a pamphlet and sent them home.
Mr. Hebert, a retired real estate consultant for the U.S. government, said he was angry for about a month. Then he joined a support group, through the Alzheimer’s Association in Marin County, focused on the early stages of the disease.
“I was able to understand what was going on because I could speak to others like me,” he said. “It didn’t feel like a nightmare, or the end of my life.”
Currently the Alzheimer’s Association in New York City offers 120 support groups for caregivers but only 10 for those in the early stages. But Paulette Michaud, director of the early stage program, says attendance has nearly doubled in the last seven years.
“It gives me a sense of calm, and I walk out feeling good that I’m still where I am–just trying to hold on,” said Natalie Post, 81, who has had Alzheimer’s for nearly seven years.
Social groups have also formed. “Many don’t want to just sit around and talk about their problems all the time,” said Darby Morhardt, an assistant professor at Northwestern University Feinberg School of Medicine.
Morhardt helped begin a group called the “Culture Bus” in Chicago, where groups of 15 people spend six days touring various museums and galleries.
And new books are landing on the shelves tailored for the people suffering from the disease, written by people with Alzheimer’s. Mobley wrote “Young Hope” in 2004, chronicling her own struggle. Thomas DeBaggio of Arlington, Va., published a book in 2002, “Losing My Mind,” and allowed the public to follow the progression of his illness in a series for National Public Radio. A book by Richard Taylor, a psychologist, is coming in November called, “Alzheimer’s From the Inside Out.”
The play “To Whom It May Concern,” written by Maureen Matthews, a psychiatric nurse, is a first for the annual Early Stage Memory Disorders Forum hosted by the Alzheimer’s Association in New York. Typically the conference covers new scientific research, but the play revealed a completely different side of the illness.
The script is made up of a series of letters read out loud by four actors who all have Alzheimer’s. Each letter describes a personal issue, from accepting the diagnosis to facing the stigma.
“Don’t worry, this isn’t going to be one of those general Christmas letters that people send to brag about their above-average children and hyperactive schedules,” Carpenter says in the opening lines of the play. “No, I’m writing to let you know what it’s like to be me these days.”
The greatest challenge, described in the play, is living with a tension of still being cognitively intact and watching one’s self slowly fade away.
“I find myself thinking, what can I do if I’m getting worse and worse?” Carpenter said in the interview. “I sometimes go to sleep thinking, how can I deal with this? Why can’t I get better?”
But some also say there is a positive side to knowing they have dementia.
“There’s a lot of grief about the future you thought you had,” Ms. Hebert said. “But we concentrate on what we have today, and we appreciate it more. And that’s the unexpected good part of it.”
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