From the front lines, a fight for aging boomers

Martin Bayne doesn't so much sit in his wheelchair as he sprawls in it. He looks like he might slip out at any moment. He is obese - a consequence of so many diseases, medications, and limitations.

His world is so small now, a room and occasionally the hallways of a personal-care home near Allentown.

It is from this isolated existence that Bayne, 63, has reached out to an enormous audience in the last year. He has had an essay published in Health Affairs, a leading health-care journal, and has been interviewed by the New York Times and by Terry Gross on her NPR radio show, Fresh Air.

Bayne sees himself as a "clarion" for aging baby boomers. For 11 years, since early-onset Parkinson's disease left him unable to care for himself, he has been living in a world that primarily elderly people inhabit - institutional long-term care.

He has made many discoveries about this life, about its limitations and indignities, and he's trying to wake up his generation. He borrows an analogy from Jimmy Carter: Boomers are on an elegant train, in the dining car, feasting on foie gras and steak, but only a few miles ahead, the track is out.

"A lot of people are going to get hurt," he says. "Lose their dignity. Lose their way of life."

Bayne recently got out of the hospital after weeks of pneumonia. Doctors also found a mass the size of a grapefruit on his thyroid. This is all on top of congestive heart failure, two pulmonary embolisms, and more.

Every word he spoke  during a visit last week was a struggle, but his wit was intact. Asked how he was doing, he said, "I'll make it through the interview."

Bayne excelled early on as a salesman of long-term-care insurance. The more he sold it, the more he saw its limitations, and the more he realized America needed to develop a new attitude about growing old and a comprehensive system to care for people as they declined.

Bayne realized that millions of Americans were suffering from chronic illness, but that there was no comprehensive system to help pay staggering bills or to provide care in acceptable settings. He became such an expert in long-term care and an advocate for reform that he earned the moniker "Mr. Long-Term Care" and once ran a popular website.

He tilted at the biggest windmills. In an interview with The Inquirer 13 years ago, he said: "The culture doesn't know what to do with people who are old and frail. We hide them away. We have such a pathological view of aging. They want us kept young forever, having face-lifts. Until we deal with how we turn away from aging, long-term care will always take a second seat."

As his Parkinson's progressed, he became an enormous consumer of long-term care, first at home with aides, then for the last 11 years in two different facilities.

He had foresight to buy a long-term-care policy at age 40, for a $1,000 annual premium, which would pay up to $231 a day for life. His policy, he said, has paid about 80 percent of his $750,000 in long-term-care costs.

Bayne has now lost hope that America will develop a system to provide for the long-term care needs of its citizens. Neither the people nor the politicians have the will. His blunt solution: "Children should be tasked with taking care of their parents."

Alas, Bayne, divorced, has no wife, no children. As his world has shrunk, so have his goals. He now just tries to improve the life of residents in his community. His descriptions are so powerful they have carried his voice far beyond his isolation.

"Most residents in assisted-living facilities, by necessity, live secret lives," he wrote last year in Health Affairs. "On the outside, there might be a calm, even peaceful, veneer. But beneath the surface, all of us are susceptible to the ambient despair that is a permanent component of life in this type of facility.

"It's the result of months or years of loneliness and isolation and of a lack of true social interaction among residents. It's also the result of burying our feelings and emotions about the exceptionally high numbers of demented and disabled neighbors around us and being surrounded by frequent death."

Bayne recounted a story about an elderly resident who interacted with no one. Bayne tried repeatedly, day after day, just to shake the man's hand. He cut the man off with his wheelchair after dinner, blocking his exit, and still the man refused. Finally, one day, the man accepted Bayne's extended hand.

"After that day, something happened to him deep down inside," Bayne said. "Every meal after that, I would shake his hand."

One day, the man, who always dressed in shabby clothes, came down in a fresh, pink oxford shirt. Bayne knew what it meant. "I started crying," Bayne recalled. "My friend said, 'Don't worry. Everything is going to be just fine.' He died that night."

"Residents all feel enriched by their relationships with Marty," said Suzanne Panick, the administrator at Sacred Heart Senior Living in Center Valley. Bayne routinely now sits with residents when they're dying. A woman said to him, "There's no place like home," before drifting off and dying days later.

Bayne has changed in these last years. As he has grown more dependent, he has become more giving. "I learned how to reach in and touch a person's heart," he says. "Not in a manipulative way. But in a powerful way, in a way that gives the person being touched great power."

This story takes a sharp turn.

On Tuesday, the day after our first interview, Bayne went by ambulance to a hospital in Bethlehem.

He had fallen out of his wheelchair. A personal-care home is not prepared to care for someone of his size, with his needs, said Panick, the administrator.

From the hospital, he will go to a nursing home. Panick says she worked hard to find a nursing home that would take someone of Bayne's size. It will have equipment to lift him when he falls. And a therapist who can work with him to lose weight.

Bayne vehemently didn't want to go. He wanted to stay in his assisted-living facility, his home. But in his eyes, what he wanted didn't matter.

From his hospital bed, by cellphone, struggling for breath and words, Bayne said Wednesday: "I've spent most of my adult life being an advocate for other people. And when it's my turn, I don't have anyone to step up to the plate for me and no one to turn to."

Panick, the administrator, visited Bayne in the hospital Thursday. She is fond of Bayne, and he knows that. She explained that Sacred Heart just didn't have the facilities to help him. He needed rehabilitation to get stronger, lose weight, and return.

"I'm not upset," Bayne said, barely audible on the phone. "It's all changed again. But that's the way it is. I look at it as a challenge. And that challenge might be good for me. So I'll make the best of it."