(December 6, 2008)

What Does Alzheimer’s Feel Like?

When Maureen Matthews was working on her doctoral dissertation at New York University, she interviewed dozens of people in the early stages of Alzheimer's disease.

In interview after interview, she came back to one question: What does it feel like to have Alzheimer's, a brain disease without a cure?

Patient after patient offered insights, some more lucid than others.

"Dissertations usually gather dust," Matthews said, "but I was so moved by the stories people told me in the interviews that I wanted people to hear what I heard."

That's where "To Whom I May Concern" came from, a performance piece written by Alzheimer's patients and read, as letters, by Alzheimer's patients. It gets its title from its letter format, but rather than beginning the letters "to whom it may concern," they begin "to whom I may concern."

The letters discussed the diagnosis, sharing the news, coping, humor, good days and bad days, and the value of the support group.

"I don't want to disappear," wrote one patient, recalling how a friend with Alzheimer's is now reduced to looking out a window at a senior home.

"Alzheimer's is a real conversation stopper," wrote another, adding that sharing the diagnosis changed people's behavior. "It becomes the elephant in the room that no one wants to talk about."

Over the past three years, in Manhattan, Queens, Chicago - and last month in Rockland and this week in Ardsley - Matthews has helped early Alzheimer's support groups gather stories and create theater.

"It puts the spotlight on them and they initiate the conversation," Matthews said. "It was a way for me to get out of the middle and let them speak."

While many of the stories followed the same themes from group to group, each gathering - and therefore, each performance - has been different.

"There's a kind of culture to each group," Matthews said. "In Manhattan, they were taking the subway to the meetings, so that had a different spin. The group in Queens had been together for years and so they had a different family feel. And this group is also unique."

The script for last Tuesday's performance, at Atria Woodlands Assisted Living Center in Ardsley, was written by two dozen members from Rockland and Westchester support groups and performed by five group members: Lorna Lake of White Plains, Lydia Panaro of Mamaroneck, Mary Rynn of New Rochelle, Marty Soslowitz of Spring Valley and Art Widman of Katonah.

They sat at a table in the front of a large Atria ballroom and took turns reading from the script.

"We're not talking about vacations, or the downturn in the economy," one person wrote. "We're talking about the downturn in my memory."

Others shared tricks for keeping sharp - using a notebook to remember things and chatting to buy time as they jot things down.

Or using humor.

There are plenty of laughs in "To Whom I May Concern."

Wrote one woman: "Someone asked me if I had a memory bracelet in case I got lost. I told them that I had so many medical problems that I needed a charm bracelet to cover them all."

One man wrote that when he told a friend of his diagnosis, the friend joked "Hey, remember, you owe me $20."

Several of the stories, snippets of thoughts, involved their frustration at not being able to keep up.

"Just give me a minute," one man wrote. "My words come slowly, but they'll come."

For the foreseeable future, Matthews isn't likely to run out of support-group members: 5.2 million people in the U.S. are diagnosed with Alzheimer's or some other form of dementia. Every 7.1 seconds, a new case is discovered, according to the Alzheimer's Association.

Matthews said she knows that her performers are hers for a limited time: The nature of the diagnosis means that these early stage patients will soon no longer be early stage. They will lose the focus required to follow along in the script.

"That's why you can't go on the road too much," Matthews said, "because people do progress in this disease.

"I would like very much to find someone to write with me a real performance that could be used as educational theater, with real actors," she said, "because I think their stories are really important."

After last month's performance in Rockland, Matthews said, some of the support-group members who had been too shy to participate in the show took part in the Q&A.

"Someone said that it was because when they saw how well received the performers were, it gave them the courage that it's OK to be visible. It happened spontaneously."

Morgan, a psychotherapist at the Stamford Counseling Center, says listening to these stories is its own reward.

"What's neat is that if you listen long enough, the gems are there.

During the Ardsley Q&A, Katonah's Widman offered a charming perspective on his condition, which he refuses to let define him.

"I can't remember what I had for breakfast, but that's OK," he said. "I'll have breakfast again tomorrow."