BLOOMINGTON, Ind. (AP) — Don’t feel sorry for Sharon Brehm.
The former Indiana University chancellor and former president of the American Psychological Association can no longer drive a car and needs help balancing her checkbook, but wants people to know she is living with Alzheimer’s disease, not dying from it.
During an hour-long interview at The Herald-Times, the 68-year-old academician and author smiled almost nonstop as she insisted there’s life after Alzheimer’s.
“I’ve come to realize you can have a decent, reasonably good life with Alzheimer’s,” she said, peering through a pair of spectacles riding low on the bridge of her nose. “It’s very difficult for me to go public with this because there’s a stigma associated with this disease, but this is my new reality and I have to live with it.”
Brehm said her acceptance of Alzheimer’s disease — the most common form of dementia that causes steadily worsening problems with memory and thinking and eventually leads to death — has helped her emotionally and psychologically. But it did not come quickly … or easily.
Brehm got her first inkling that something strange was happening inside her brain in 2010, when the tenured psychology professor at Indiana University got lost in the Psychology Building.
“I was scared,” she said. “I knew there was something wrong with me, but I couldn’t deal with it. I didn’t want to accept it,” she told The Herald-Times (http://bit.ly/15csIl9 ).
She said she was in denial for many months, but her friends in the psychology department eventually persuaded her to undergo an exam by a neuropsychologist in Indianapolis, who delivered the sobering news that she had Alzheimer’s. She sought a second opinion from a Bloomington neuropsychologist, who confirmed the diagnosis.
“I thought the diagnosis was really awful, and I wanted it to just go away,” she said, adding that her mother died from Alzheimer’s at age 68. “I was very depressed and afraid. But now I’ve embraced the disease because it’s me, and that makes things easier.”
Brehm’s husband, Jack, died in 2009. But she does have a strong network of friends and colleagues she can lean on, not to mention Home Instead Senior Care — a senior home care service agency in Bloomington.
A year ago, Brehm began receiving in-home services 30 hours a week from the agency, which provides her with caretakers who help her with emails and the Internet, make sure she fills out her checks correctly, and drive her to the grocery store or doctor’s appointments,
“I’ve always been a pretty independent person … sometimes too independent,” she said. “So giving up driving is one of the hardest things I’ve ever done. When I lost my car, I lost my freedom, and I knew I’d never get it back. It’s hard to rely on other people to take me where I need to go.”
But she welcomes the help.
“Without Home Instead, I’d be in very bad shape,” she said. “I have always been very meticulous about writing checks, and have never bounced a check in my life. But now managing my checkbook is difficult, and it gives me peace of mind knowing my caretakers are making sure I’m doing it correctly.”
Brehm, who’s written more than a dozen books ranging from “Social Psychology” to “Intimate Relationships,” said closing the curtain on a prolific writing career has been difficult. She’s also not thrilled about the cost of her four daily medications, which takes $300 out of her pocket each month.
But she said one thing has improved in recent years, though she’s not sure if she should credit Alzheimer’s disease or the process of aging for the transformation.
“I had a temper when I was younger,” she said with a smile and a lilting, light-hearted laugh. “Now I’m more mellow.”
Home Instead’s Joe Yonkman, who is Brehm’s care manager, did not see much of that mellow side when he first met her a year ago.
“At first, Sharon wanted no part of me,” he said. “She just wanted me to go away.”
But six months ago, as the two of them were strolling along the B-Line Trail on an unseasonably warm day in March, Yonkman saw a breakthrough.
“She really opened up,” he said. “She talked about her mom’s struggle with Alzheimer’s and her feelings about dealing with the disease. That day marked the beginning of the new Sharon.”
Today, the two of them are certifiable pals — talking often in person and on the phone and going together to local Alzheimer’s Association meetings.
Brehm speaks with unvarnished candor about her long-term prognosis.
“There is no cure at this time and the disease proceeds to death,” she said. “The medications I take do not stop the progression of the disease. They only moderate the symptoms.”
But she feels that because so many scientists and pharmaceutical companies are feverishly searching for a cure, one of them will one day succeed.
“I think it will happen,” she said. “Maybe not in time for me because I’m old now, but I think a cure will be found. We’re blessed to have so many brilliant researchers working on this, and some day one of them is going to win a Nobel Prize for finding the cure.”
Brehm has decided to talk about her life with Alzheimer’s at the “Walk to End Alzheimer’s” Saturday at Bryan Park. She will speak around 10:40 a.m., with the walk beginning at 11 a.m.
“This is who I am now, and I want to make a difference,” she said. “I think it’s important for the community to understand more about Alzheimer’s and what happens to people who have it. If I can help with that by going public, then that’s what I want to do.”
One thing is sure. Among her most ardent supporters at the event will be a group of her colleagues from IU’s Department of Psychological and Brain Sciences.
Shortly after Brehm emailed the chairman of the department, Bill Hetrick, to tell him about her upcoming talk, Hetrick let her know they were putting together a team that would participate in the walk.
“When I heard that, I was so happy I jumped up and down,” she said.
Brehm said she hopes her talk will help lessen the stigma associated with the disease, and show people struggling with Alzheimer’s that their lives are still worth living.
Though Brehm has given scores of speeches during her career, she said the personal nature of her upcoming talk will make it more challenging than any she’s ever delivered. She predicts a swarm of butterflies will be fluttering inside her stomach.
“I know I’ll be nervous,” she said. “I just hope I don’t cry.”
Information from: The Herald Times, http://www.heraldtimesonline.com
This is an AP Member Exchange shared by The Herald-Times.