Posted on 12/02/2003 2:22:50 PM PST by Mr. Morals
Living with Alzheimer's, ex-Sen. Proxmire is cut off from his storied past
BY KATHERINE M. SKIBA
Milwaukee Journal Sentinel
WASHINGTON - KRT NEWSFEATURES
(KRT) - He was a poster child for health and fitness, a physician's son from a tony enclave near Chicago. His degrees bore the imprint of Harvard and Yale.
For more than 31 years he toiled in the U.S. Senate, becoming the nation's best-known scold against government waste. His public relations genius was such that his name became a household word.
Bill Proxmire.
His legendary hand-shaking among throngs at the Wisconsin State Fair, Green Bay Packers games and Milwaukee Brewers games made the people of Wisconsin feel they knew him - personally.
He was a most public man - until the curtain came crashing down.
Brainy, willful and disciplined, the author of "Your Joyride to Health" and "You Can Do It! Senator Proxmire's Exercise, Diet and Relaxation Plan" was sick.
He had Alzheimer's disease.
Today he is 87 years old. He lives out a fog-shrouded twilight, one no one would have predicted, far from the klieg lights that once trailed him.
"Prox," as he's called, is oblivious to many chapters of his life, notably his Senate years from 1957 to 1989.
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He resides in a state-of-the-art long-term care facility near Baltimore but rarely, these days, can identify his loved ones when they visit.
He confuses wife Ellen, 78, for his late mother. He mixes up eldest son Ted, 55, with a brother of his who died in a plane crash decades ago.
Proxmire was placed in the facility, Copper Ridge in Sykesville, Md., about a year and a half ago.
As his relatives tell it, the placement capped a nerve-jangling odyssey marked by his nighttime escape from an Alzheimer's unit in a Washington hospital, a temporary stint in its psychiatric ward and, finally, a stretch at Johns Hopkins Hospital in Baltimore.
It was in March 1998, almost five years ago and years after leaving the Senate, that he disclosed publicly that he had Alzheimer's.
"I can't remember what I've read," he said then. "Sometimes I can't remember where I am, although it doesn't happen very often."
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Much has changed since. Long a devotee of the Library of Congress, where he kept a study carrel, he got lost once on Washington's Southwest Freeway - on foot. He fell down a lot. Once he put his running sneakers in the microwave - and burned them to a crisp, Ellen Proxmire says.
His gait is unsteady. His right front tooth is missing. The left side of his face wears old scars from cuts suffered when he has dropped to the floor.
About a year ago, he had a minor stroke.
But the once-fastidious weight watcher now eats heartily. Given his illness, his weight had fallen to 129 pounds before he arrived at Copper Ridge. Now Proxmire, who stands 5 feet, 10 inches, weighs about 175.
He has a full-time personal attendant who keeps him, in Ellen Proxmire's words, "pink and polished."
But his wife remains blunt about his fate. "He doesn't know where he is, or who he is," she acknowledges of the man she remembers as "absolutely brilliant, with tons of energy, and never sick."
They married 46 years ago.
Now, she says, her once-famous, once-vibrant spouse is "happy like a 3-year-old."
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She and Ted Proxmire, her stepson, invited a reporter to Copper Ridge to see the former senator this month, asking only that he not be photographed.
Ted Proxmire, an investment counselor who lives in Bethesda, visits every Saturday. As he did last week, he brings along Mikey, a 2 1/2-year-old wheaten terrier, a hit with Dad and others in the 126-bed facility.
"Hello, doggie," Ted's father said. "You have no fleas. You have no bad manners."
All told, Proxmire said little - and less that made sense. Mostly, he kept up a low, incessant hum.
"What have you got there?" he asked the reporter at one point, sizing up her notebook and tape recorder.
The reporter identified her newspaper, whose predecessors devoted a mountain of newsprint to the man over his decades in public life.
"She's making notes," the son said.
"You've got your shirt off?" the father replied.
"No, no, no. She's making notes," the son said.
"I'll be darned," father said.
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Copper Ridge, owned by the Episcopal Ministries to the Aging, sits, coincidentally, on the site of an old dairy farm.
Ellen Proxmire said she visited more than a dozen facilities before choosing it. Ironically, it was Sibley Memorial Hospital - the place from which her husband escaped in 2001 - that recommended it.
The family had hoped Sibley would be perfect; it was in northwest Washington near their old home, which Ellen has given up in exchange for a high-rise apartment.
Remembering Sibley, she says: "He wasn't there more than two days when he escaped. And I had a caregiver stay with him during the day, thinking that would make the transition easier.
"Then we didn't know where he was. And he just showed up at the front door, and said, `I've had a long day at work.'"
"A week later, he was at Sibley in the psych ward, before he could be transferred to Johns Hopkins."
Ellen Proxmire, long a noted event planner in the nation's capital, remarks: "He could have been murdered or hit by a car. And under no circumstances would Sibley ever take him back.
"But they knew about Copper Ridge."
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Copper Ridge has an affiliation with the renowned Johns Hopkins. Doctors kept Proxmire at Hopkins for three or four weeks, taking him off all medications so they could evaluate him afresh and plan a new course of treatment.
The family says he took to his new home at Copper Ridge. "His moods were not nearly as erratic, they were more consistent," Ted Proxmire says. "He seemed to be happier and much more mellow."
Ellen Proxmire says she went for months before getting up the nerve to ask Prox how he felt about Copper Ridge.
"I adore it," he told her.
Prox was nothing if not a creature of habit. The hand-shaking? In his days on the campaign trail, he kept a clicker in his other pocket to keep track of the handshakes - and there were millions, says Matt Flynn, a longtime friend and former state Democratic Party chairman.
Flynn knew. He shook hands alongside Prox in Flynn's own campaign for the U.S. Senate - and discovered the clicker.
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Prox used to compete against Gaylord Nelson, long his Senate counterpart from Wisconsin, to see who could do the most push-ups. He jogged the 5-mile route to work, rain or shine. He had been rising early to exercise since he was a teen.
He set records for consecutive roll-call votes in the Senate. He gave thousands of speeches, one day after the next, for an anti-genocide treaty. He was a compulsive newspaper reader. He devoured crossword puzzles.
And he loathed vacations.
From Ellen:
"You keep reading that if you eat properly and exercise a lot and go to bed early and don't drink and don't smoke - I mean, Bill was the most disciplined individual you could ever find.
"He ran. He was almost compulsive about exercise. He was very cautious about his diet. He was always to bed at 9:30. And he always got up early.
"If you could design a surefire, healthy regime, it was him.
"And it didn't keep him from getting this."
Alzheimer's is a progressive disease in which the nerve cells in the brain degenerate and brain matter shrinks. Four million Americans are thought to have the affliction, said not to play favorites among rich and poor, famous and ordinary.
Ronald Reagan, the former president, underscores that point as well as Proxmire.
Constantine Lyketsos, 41, is a Johns Hopkins professor of psychiatry who specializes in Alzheimer's. He doubles as chief of psychiatric services at Copper Ridge, which he says has a can-do attitude toward the disease.
"We don't see ourselves warehousing people, but treating them in a way that maximizes their quality of life, functioning and dignity," Lyketsos says.
He says the degenerative illness afflicts about one in three people ages 85 and older. He believes that in about 70 percent of the cases, genetics are the culprit. In the other 30 percent, factors such as head injury, stroke or depression factor in.
"I don't know if it's the case with the senator, but if it runs in the family, there's very little you can do," he says.
Ellen Proxmire says it's hard to say; Prox's parents didn't live as long as he has.
What of Proxmire's noted health regimens? The psychiatrist says only that, generally speaking, people like Prox - with previous good health, high socioeconomic background, intelligence - have more reserves to cope with the illness.
Prox was best known for his Golden Fleece awards, lampooning federal spending on chauffeurs for federal officials, wasteful military spending and some research studies, such as a $27,000 project on why prisoners escape.
He championed credit and finance reforms. He banged the drum - loudly - for an anti-genocide treaty, until he got it.
Today there are no more TV interviews, no more dinners in Georgetown, no more engagements from coast to coast, no more books and columns.
No more speeches.
No more Fleeces.
"You Can Do It!," his plan for exercise, diet and relaxation, is out of print; used copies are for sale on the Internet for $2.57.
People occasionally write for an autograph, though Ellen says his handwriting is barely legible now.
His aide, Shelby Muse, 56, from Baltimore, with him six days a week, with a sub on the seventh, might take him to Red Lobster or Wal-Mart. They used to go to movies together - Proxmire delighted in popcorn and favored comedies or political dramas - but not lately.
Copper Ridge, meanwhile, has a busy schedule of offerings: bingo, exercise, bean-bag toss and parties with mini-pizzas.
Ellen says he doesn't take part in much but goes to church sometimes.
Son Ted says he visits every week as a way to reciprocate for all Dad did. "He was willing to make all kinds of personal sacrifices for the benefit of his children, particularly in terms of money and time." He paid the tuition - for colleges and boarding schools - without a dime in scholarship money.
Ellen and Bill Proxmire have five children in all, and nine grandchildren. After a long, arduous journey, facing an uncertain future, they have come to terms with Prox's fate.
"He's very comfortable," Ellen says. "He's at peace, I guess, is the only way to describe it."
Sometimes, I wonder just how much we do with research. Where does it all go?
Eventually, her paranoia did her in - she didn't follow her doctor's instructions to deal with her congestive heart failure, and died last year at 70. It sounds cruel to say it was a relief to everyone in the family...but it was.
Never confuse the words "stupid" with "faithful" (and loving as well.) You did good Mr. Jeeves.
Actually, research is coming along. There are drugs now that if taken in the very beginning of the disease can slow down or retard the effects of Alzheimer's. Also taking a motrin type product is being shown to help. They are making progress thank God.
I remember a quote that "NASA neglected to figure out a way to run the rockets on either milk or cheese" with regard to Sen. Proxmire.
Don't forget about all the farm subsidies that never got the golden fleece either.
Great observation about starving R&D. It is very poetic. And just. He practiced short term politics, rather than long term common sense and planning.
Wasn't he one of the first to have hair transplants? I wonder how grants for that suffered under his reign.
I'll have a emphathetic thought for his family.
He's the only Democrat I ever voted for. All though the last time he ran I pulled the "R" lever for the first time, and have been doing so ever since.
By the way, smoking prevents Alzheimer's. Depending on how you look at it, it either cuts the incidence in half, or postpones the onset by five years.
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