When Joe Wallace’s grandfather suffered a heart attack and was subsequently diagnosed with advanced dementia, the then twenty-something advertising copywriter rushed from New York City to Birmingham, Ala., to help his mother and grandmother cope with the fast-changing situation.
While the two women met with medical professionals, Wallace kept his grandfather company — something he had not done since he and his parents left the South for New England when he was a boy.
“I was grateful to be there helping, but also really nervous about what to do and how to engage with him,” Wallace, who now lives in Carlisle, recalled nearly 20 years later. “After the discomfort and small talk, I started asking him questions and getting him to tell me about his youth.”
The answers were a revelation.
“I heard about how he put himself through college on a football scholarship and became a Golden Gloves boxer. He built roads through the swamps of Georgia with a WPA project. His best friend was a young black man — this was in the South in the 1930s — who drowned in a town swimming pool. When he told me that story, it was the first time I’d ever seen my grandfather cry.”
Wallace soon realized that his grandfather had done more than share some anecdotes from his past. He had introduced the younger man to a kind of vulnerability and candor that made the idea of dementia seem much less frightening.
That experience, Wallace said, planted the seed of what two decades later would become his life’s work, as he set out to chronicle the stories of other dementia patients like his grandfather. The result is “Beginning at the End: Portraits of Dementia,” a traveling exhibit that will be on view at The Umbrella Community Arts Center in Concord from May 17 to June 13.
Wallace has interviewed and photographed more than 40 seniors with various stages of dementia thus far; the exhibit at The Umbrella includes 25 of them.
Finding his subjects largely through word of mouth and visits to senior centers, he takes each person’s picture, drafts a short narrative about his or her life based on an informal interview with the senior and sometimes a caregiver, and juxtaposes the portrait with a photo from an earlier time in the subject’s life.
Barbara-Jean Fox, born in Roxbury in 1940, couldn’t recall the 25 years she worked at New England Telephone. Yet she had vivid memories of her parents taking in a little girl whose mother had died. “I love children,” said told Wallace. “I get that from my mother and grandmother.”
Asked if she was afraid of dementia, she answered, “I have wonderful friends, I don’t need to worry. They will help me.”
Phyllis Newell Kirkpatrick, born in Queens, N.Y., in 1934, chafed at her loss of independence after she was diagnosed with
Alzheimer’s. Yet she relished telling stories from her past, including her days of modeling and how she met her husband.
“We met under a tablecloth at a party,” she told Wallace. “He was not my date. He saw me crawl under there and a few minutes later he joined me. And that’s how it all started!”
“My hope is that each one of their stories will be an opportunity for someone to see themselves or their own struggle reflected back at them,” Wallace said. “I’m trying to use empathy to build connection and to start a conversation.”
It took several years to make his vision a reality. Working as an advertising copywriter and then a professional photographer in New York City, Wallace was too busy building a career and making a living to turn his passions into art.
But then some life changes took place. “As my kids were getting older I wanted to be home more,” Wallace recalled.
Wallace and his wife relocated to the Boston suburbs, and he gave up full-time work to become primary caregiver for their two young children, a decision he calls “transformative.”
“This new perspective made me think about my craft and what I was passionate about,” he said. “I had the opportunity to consider what kind of work was important to me regardless of prestige or paycheck.”
Wallace conceived of the “Portraits of Dementia” project as a way to encourage people to think not only about how dementia affects or potentially could affect their own lives but also how they might reach out to others.
“Even more than provoking a conversation, maybe this can get people to act,” he said. “Make a donation to the Cure Alzheimer’s Fund. Volunteer at a nursing home. Help a senior with their hair or their nails. Bring in your dog for pet therapy.
“You say dementia or Alzheimer’s and people will regurgitate back to you certain kinds of imagery, certain stories, which are decidedly negative and scary the vast majority of time. I don’t think the experience needs to be that way.”
Several family members of the seniors featured in the exhibit said they appreciated the chance to share their stories.
“Alzheimer’s is one of those things that needs to have some light shed on it, but it’s also something that is unpleasant and sad, so people don’t always want to deal with it,” said Beth Manning, Kirkpatrick’s daughter. “My mother used to be a model, so the idea of posing for photos was fun, and she’s good at it. And I feel good thinking that we are helping others by talking about it.”
For Barbara Zeckhausen, there was something both validating and altruistic about taking part in the exhibit with her husband, Bill, an 83-year-old pastoral minister and psychotherapist who has Alzheimer’s disease.
“I appreciate Joe’s efforts,” she said. “This is about normalization. It’s all to the good when you can say that this is part of life and we’re living with it. Joe’s work is part of that.”
“Beginning at the End: Portraits of Dementia” is on exhibit at The Umbrella Community Arts Center, 40 Stow St., Concord, May 17 through June 13. For hours or more information, call 978-371-0820 or go to www.theumbrellaarts.org. To learn more about Wallace’s work, go to www.portraitsofdementia.com.