AUGUST 2001

GIFT TO ALZHEIMER'S FAMILIES: BARRON INITIATIVE WILL HELP

Terri Jo Barron will never forget the day she finally put a name on the mysterious forces changing her once vibrant and powerful husband, Dempsey Barron, the former Florida Senate President.
Barron died July 7, not long after his wife learned the answer and decided to make a large gift to FSU to make it easier for other families going through the same thing.
For nearly two years, she had listened as Dempsey, a wonderful storyteller, would tell guests the same tale two or three times in an evening.
She had cringed when his questions were repetitive: Where are we going again? Why are we going there again?
She knew he was losing his edge. He wasn't the same quick-witted, feisty person she had loved to engage in good-natured debates.
But doctors hadn't told her why her husband's personality was slipping away.
On the Monday before Thanksgiving 1999, just before 35 guests were invited to the Barrons for dinner, Terri Jo was determined she was not leaving the doctor's office until he told her what was going on with her husband.
"The doctor told me about the Parkinson's, but he still didn't say anything about the Alzheimer's. I went out to take Dempsey to the car, and then I went back in and had him up against the wall. And I said, 'Doctor, what about the Alzheimer's?'"
She was the first to utter aloud the frightening word. The doctor agreed it was Alzheimer's.
Then she knew what she was dealing with, and it catapulted her into a quest for knowledge on what to expect.
At the time, they were living on a ranch in Bonifay in the middle of nowhere. So her personal computer was her gateway to information.
Now, she wants to help others who are coping with elderly family members who have neurological diseases.
The Barrons have given Florida State University $3 million to endow the Dempsey Barron Initiative to Advance the Care and Quality of Life for Elder Floridians with Neurological Impairment. The dream is that the Barron initiative - a collaboration of the College of Social Sciences, the College of Communication and the Pepper Institute on Aging and Public Policy - will become a model on helping families and professionals deal effectively with people who have neurological diseases.
When she first discussed the gift with FSU officials, Terri Jo says, "Sandy (FSU President D'Alemberte) was talking about research. And I said, 'Sandy, no, no, we're not talking research. We're talking about immediate help for people who are suffering from these things and their families.'
"Number One: Why should we do hard things alone? And Number Two: Why should we reinvent the wheel? Whatever our situation in life, our difficulties, someone has been there before us and has learned from it."
The "Barron Initiative" will help people with information and support.
"The Communication's side will work on treatment programs," said College of Communication Dean John Mayo.
Marie Cowart, dean of the College of Social Sciences, said she hopes the Barron contribution will help people with neurological problems and the family members who take care of them.
Not only will information be distributed by web sites, pamphlets, rural clinics and senior centers, the project will provide better training to professionals who deal with the elderly population, from law enforcement officers to social workers.
"With the population aging and the bubble of Baby Boomers moving into the later decade, this is going to become much more prevalent," Cowart said. "We are so appreciative to the Barrons, because Dempsey had such a long record of helping people in Florida and in the Panhandle."
He received a bachelor's degree in business and a law degree from FSU. In 1956, he began his political career as a representative of the Bay County area. Elected to the Florida Senate in 1960, he served there until 1988.
A longtime power in the Legislature, he was Senate President from 1974 to 1976, and he put together a coalition of Republicans and conservative Democrats, known as "Dempseycrats." They controlled the Senate in the early '80s.
Terri Jo, who went to FSU College of Law on a scholarship, was his aide in his Senate days and said it was their mutual quality of being "realistic optimists" that drew them together.
"Dempsey used to say: 'With every rose, there comes a thorn, but ain't the roses sweet?'" she recalled.
"You know, Ronald Reagan did the country a great service with his letter about Alzheimer's," she said in June. "And Dempsey is the same kind of person. He is not crazy. He is not mentally deficient. He has a disease with known symptoms, and, unfortunately, no cure, and a known result. It's a progressive, degenerative, fatal disease."
She said he would have approved of being open about his diseases and using them to educate others, because education was so important to him.
"Were it not for the GI Bill, he would have retired 15 years ago from the paper mill in Panama City," she said. "That's no exaggeration. He was a fifth-grade dropout. He worked at the paper mill at one time. It was very important to him to give people an opportunity at an education."
In her mid-50s, Terri Jo said she listed her occupation as "caregiver." And though she could hire helpers and nurses, much of the caregiving fell to her.
"One of the things I heard in one of the early seminars I went to was: 'They lose so much of themselves, but they don't lose their souls,'" Terri Jo said before he died. "When you love somebody, you still see sparks of their soul. There're better days and not-as-good days. But Dempsey is such a strong, determined, exceptional person.
"Personally, I don't think God gives anyone a disease so you can learn from it. I think these things happen because we're human beings. We're just beings. All of us are born. All of us are going to die.
"But the choice we can make is whether we do learn from them, or whether we give in, 'sull up' and pout."
One of the major lessons Terri Jo said she learned was patience.
While attending seminars, support groups and through her reading and research, she said, it finally got through to her: "Oh, it's not Dempsey!
"It's the disease! Don't be mad at him. Don't be frustrated with him. Don't be impatient with him. Be angry, be frustrated, be impatient with the disease.
"That second lesson is that I am not in control. Once you are not in control, then you can let go. It's a big, big burden off your back."
For those in a similar situation, Terri Jo hopes the "Barron Initiative" will provide the information and support she knows they need. - Jan Pudlow

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