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Norwalk Reflector Interview with Carolyn Haynali

Run Date: 10/06/2005

Caregivers not alone

By AARON KRAUSE - Reflector Staff Writer

Chuck Haynali was in a panic: Someone was trying to kill him, and he was on the porch, hollering for someone to help.

This isn't a crime story, and Haynali wasn't in any scary-looking looking, dark place with shady-looking people surrounding him.

He was at home with his wife, Carolyn -- a wife who could only watch helplessly, or plead with Chuck that she was the love of his life and far from trying to kill him, she was trying to help him. She was, after all, Chuck's wife of 50 years, and together they had two children, three grandchildren, and two great grandchildren.

That's what Alzheimer's Disease does to patients and their caregivers.

Carolyn Haynali, of WEST CHESTER, didn't know much about Alzheimer's Disease before Chuck was stricken with it.

"I sure do now," she said. "I've been with it 10 years with my husband."

She feels Chuck died twice; the first time was when Alzheimer's robbed him of his memory and dignity, and the second time, when he physically was gone.

Haynali knows what it's like to live with a soulmate who know longer recognizes her -- and she wants the U.S. Government to find a cure for a disease she compared to a thief in the night. So, in 1999, five years before Chuck died, Carolyn founded the Caregiver's Army, an Online support group for people who care for Alzheimer's patients. Her mission: Help other caregivers that are hurting like she was and still is. You can access the Web site at www.caregiversarmy.org.

Among other things, Haynali has written articles for newspapers and magazines. She's also been interviewed on local TV and radio and spoke at a gathering of the Congressional Alzheimer's Task Force, where she presented members with a petition of more than 20,500 signatures in support of research to find a cure for Alzheimer's Disease. To date, she has more than 145,000 signatures, and she's looking for more.

Carolyn also read one of her early poems, "Alzheimer Patient's Prayer," which is what she thinks an Alz! heimer's patient would say to express how they feel. She's written a book called "Poetry from the Heart of an Alzheimer's Caregiver," and she'll be signing copies at 7 p.m. Oct. 25 at the Barnes and Noble in Boardman, 381 Boardman Poland Road.

Alzheimer's Disease is a degenerative disorder of the brain in which nerve cells die over time. Many areas of the brain shrink and lose function. As a result, a patient suffers from a steady loss of memory and other thinking abilities (cognitive skills) and gradually loses independence.

Alzheimer's cannot be cured, but it can be treated and managed. Early diagnosis offers many advantages for patients and their families.

No single test can detect Alzheimer's. Instead, the disease is diagnosed by symptoms, findings on neurological examination and results from diagnostic tests. These tests help exclude other conditions that might cause the signs and symptoms.

Alzheimer's disease is the most common cause of dementia, which is the loss of intellectual and social abilities severe enough to interfere with daily functioning. Dementia occurs in people with Alzheimer's disease because healthy brain tissue degenerates, causing a steady decline in memory and mental abilities.

About 4.5 million older Americans have Alzheimer's, a disease that usually develops in people age 65 or older. This number is expected to quadruple by the year 2050 as the population ages.

"It will be like an epidemic," Carolyn said.

Although there's no cure for Alzheimer's disease, researchers have made progress. Treatments are available that help improve the quality of life for some people with Alzheimer's. Also, more drugs are being studied, and scientists have discovered several genes associated with Alzheimer's, which may lead to new treatments to block progression of this complex disease. One potential way to treat Alzheimer's involves stem cells, which can potentially grow into any type of human tissue and scientists hope to be able to direct the blank cell! s to grow into specific cell types needed for transplant. Stem cells are harvested from embryos, which are destroyed in the process. Opponents, including President Bush, contend life is destroyed in the process.

Alzheimer's progresses in stages; at first, a patient might have mild memory lapses but at the end, he might be bedridden and unable to feed or bathe himself and go to the bathroom.

After his diagnosis, Chuck Haynali lived at home with Carolyn for six years before moving to the Veterans Home in Sandusky. At first, Carolyn noticed small changes: Chuck would go out to the garage to get something only to return with nothing in his hands. And when Carolyn gave her husband a lightbulb to change, he was he wasn't sure how to do it.

"I thought he was kidding me," Carolyn said. "My husband was a handyman, he fixed everything."

Whether it was the washer, dryer, air condition, plumbing system or the car, if it didn't work, Carolyn knew where to turn.

"I just never had to call in anybody to repair anything in the house," she said.

Soon, Chuck would claim things such as someone was trying to take his coat and even hurt him. Carolyn recalled one incident when she was working at her computer, and Chuck asked her a question: "Where is my wife?"

Carolyn's answer that she was sitting right there didn't satisfy Chuck.

"He said 'no she isn't, she's never here when I want her,'" Carolyn recalled.

She asked him his age, and he said he was 40 (in reality, the couple were in their 60s). Someone from an Alzheimer's organization told her Chuck was probably looking for Carolyn when she was younger.

Things got worse; a couple years after the diagnosis; he escaped from the house on foot and she'd drive after him. Carolyn had to put a "safe return" bracelet on him; it listed his name, his address and the fact he had Alzheimer's.

Chuck claimed he didn't know who Carolyn was, but something told her that, deep down, he did -- and that comforted her. So did the i! nstances when she'd stand far away from him in the nursing home, and Chuck would motion for her to come to him.

"That would make me feel really good," Carolyn said. "You have to have hope someplace."

She said she never stopped treating him with dignity.

"You gotta show him love, you gotta care about him," Carolyn said, her voice cracking.

When he was still living with her, Carolyn refused to let Alzheimer's control their lives.

"I never hid him away from the public, I took him everywhere," she said.

But, people stayed away from the couple, and the calls inviting them out for dinner stopped.

"I guess they couldn't handle the idea that he had Alzheimer's," Carolyn said.

When Chuck was in the nursing home, people suggested visiting him was a waste of time; Chuck no longer knew who she was, and he was receiving good care. But she wouldn't abandon her husband.

During one visit, Carolyn tried to hug Chuck, and he told her his wife wouldn't like what she just did.

"That's OK, I'll explain it to her," Carolyn told him.

She brought Chuck home for her birthday, and a television interview she was going to do about Alzheimer's Disease and the Caregiver's Army. Before the interview was underway, family members sang happy birthday to Carolyn, and Chuck joined in. The song was caught on tape, which Carolyn still has. After Chuck died, she listened to it twice.

"I was so glad that I could hear his voice," she said.

It wasn't something Carolyn heard a lot of in the latter stages of the disease.

"It's a hard life for the caregivers and a lot of people out there don't really know that," she said, her voice cracking.

She compared Alzheimer's Disease to a robber. "Alzheimer's came and stole him away from me like a thief in the night," she said, adding Chuck wasn't only her husband, but her best friend and mate.

They'd met at a high school football game, on a weekend he was home on leave from the Navy. A year later, the two were! married. She came to know him as a person who loved to hunt, fish, bowl, fix things and work hard to support the family he provided for.

"Someone who loved life and worked hard deserves something better," Carolyn said.

Chuck was partially right when he stood on that patio hollering: Something, not someone, was trying to kill him. And it succeeded. Twice.

Thanks to the Norwalk Reflector for sending me this article so we chould share it with everyone.

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