Alzheimer's victims include the caretakers

FRANKLIN, Ind. (AP) — The decorations in the small hospital room document a lifetime of adventure and accomplishment.

Photographs show rugged mountains in Washington, the seashore of Maine and the Alamo in San Antonio. A name tag with the name Ed Fears and a worn copy of the Physicians Desk Reference sit on the table.

A framed black-and-white photo shows Fears and his wife, Andrea, as college students at a formal ball.

Andrea Fears decorated the room for her husband but doubts he recognizes any of it. Her hope is that somewhere in his fading mind is a spark of remembrance.

"Sometimes I wonder if it's even worth it," she told the Daily Journal (http://bit.ly/SrTlai ). "But I feel like I'm doing something."

Five months ago, Fears had to make the most difficult decision of her life. Her husband was in the final throes of Alzheimer's disease, unable to talk, feed himself or recognize her. The constant care was too much for the 70-year-old to bear.

She moved him into the Alzheimer's care unit at the Indiana Masonic Home in Franklin. The man that she has known for most of her life doesn't know who she is and never will again.

"It's a very emotional disease. There's no hope. There's nothing out there," Andrea Fears said. "When Ed looks at me, he just looks through you."

From the home they built together in the Center Grove area, Andrea Fears drives to the Masonic Home once or twice a week.

She helps feed her husband lunch or dinner then walks with him through the hallways of the memory center. When they get back to the room, Ed Fears sinks into the special black leather chair that his wife bought as a gift.

Andrea Fears will sit next to him, holding his hand and talking to him about what's going on. Her husband rarely even reacts to recognize she's there.

"Many times, I'll leave and go out to the car and just cry," she said. "It's hard to go up there, because he doesn't know me. I never know if he really understands what I say or not," she said.

Sometimes her children — Grant Fears, Monique Galster and Kimdra Montgomery — accompany her. They trim Ed Fears' hair. They spend a little bit of each visit decorating his room with memorabilia from his past.

Watercolor paintings by his grandchildren hang on the walls. Patches and banners supporting Purdue University, his alma mater, are draped on the wall.

A lamp that he built sits on the nightstand.

The visits are more for Andrea Fears than for her husband. She sometimes questions the purpose of putting herself through such emotional torture when Ed Fears doesn't recognize her and cannot interact.

"I guess I go up for me. You can't change it; you just have to go on," she said.

They had known each other in Indianapolis, growing up together and attending Pike High School. They both went to Purdue, where Ed Fears studied as a pharmacist and Andrea Fears worked to be a nurse.

Early in their married life, they lived on the southside but eventually moved to an old farmhouse in the Center Grove area that they fixed up themselves.

On weekends, they would take their three children to a log cabin he had built by hand.

"He was very active, always busy. He was my best friend. We did everything together," she said.

At first, the disease presented itself in fits of forgetfulness. He'd lose track of appointments, call people the wrong names and get ready to do something only to realize he wasn't sure what he had set out to do.

Other times, he was lucid, remembering details of family trips or a funny story from when they were younger.

"At the early stages, you're in denial. It's so hard to accept. You think to yourself, 'Maybe it's this, maybe it's something else.'"

Ed Fears had been a pharmacist for almost 30 years. One day, he came to his wife to discuss quitting the pharmacy. Andrea Fears was taken by surprise by his request, since he'd never mentioned anything about leaving the work that he had devoted his life to.

Looking back, she suspects he was becoming more forgetful and was worried about continuing in his job.

"He was experiencing this, but he wasn't sharing that with me. I still feel bad that I didn't recognize it," she said. "In retrospect, you can look back and see it."

Andrea Fears was working full time and their house was paid for, so she agreed that he could leave pharmacy. He would use his spare time to pursue one of his favorite hobbies as a business.

Out in the barn, Ed Fears made, repaired and rewired lamps. He called himself "Ye Olde Lamplighter" and became known throughout Indiana for his attention to detail on vintage lamps.

"Lamps and clocks, those were always his thing. People would come to him with a picture of an old lamp, and he could re-create it," Andrea Fears said.

But his memory got progressively worse. The business lasted for eight years, at which point Grant Fears took it over.

In 2005, at age 65, Ed Fears was diagnosed with full-blown Alzheimer's disease. By that time, it was clear to Andrea Fears, other family and friends that something was severely wrong.

She had tried to handle the situation on her own, relying only on the help from her children and grandchildren to take care of her husband. She even hid it from friends, in denial that it was real.

But at a point where her own health was being affected, she turned to a friend from her church, Mount Auburn United Methodist Church. Marge Patton's mother had suffered with Alzheimer's, and she suggested Andrea Fears contact the Alzheimer's Association in central Indiana.

"More and more people in our church are dealing with Alzheimer's or have the disease or know someone who does," Patton said. "My goal is to make people in the congregation like Andrea more aware of what's going on, and that there is help."

Within the past year, the family was able to get hospice care for Ed Fears. A hospital bed that made it easier to get in and out was brought to the house, and a nurse helped him bathe.

Andrea Fears was so exhausted during the day that she would simply sink into the couch at night to watch TV, something she had rarely done at any point in her life. But the constant care sapped everything out of her.

"You could feel like you were drowning sometimes," she said. "One day, I had to say, I can't do this anymore."

As his condition grew worse, Andrea Fears compared it to trying to work with a 200-pound infant. He lost the ability to do anything on his own.

When they wanted to go someplace in the car, Andrea Fears had to walk him to the passenger side, lift his leg into the car, then slide his body into the seat.

On rare occasions, her children would try to relieve her with a weekend off. They would come over for the weekend to watch their father, while Andrea Fears could spend a weekend with friends.

But the three children have their own careers and families.

"I didn't feel like I could do enough," Galster said. "We'd just try to kick in and help here where we could. I tried to go there every other week. But it never seemed like enough."

Then Ed Fears started stumbling and falling, his legs seemingly going out from under him at random. Andrea Fears wasn't strong enough to lift her husband on her own, relying on family to come over and help.

That's when she decided that it was time to move him into a home.

"You're tired all of the time, because it's so emotional. I'd rather go out and dig a ditch than deal with this," Andrea Fears said. "It would have been easier if he was a mean old man. But he was such a sweet man, to see him fade away was so hard."

Andrea Fears has accepted that her husband is gone. But she is working more with local Alzheimer's groups to potentially prevent future families from going through the pain the disease causes.

Ed Fears has taken part in an Indiana University Hospital neurological study for the past six years. When he was still lucid, they would answer questions dealing with his memory, to see how it progressed.

His family already has decided to donate his brain and spinal cord for research.

"You see these people who were so dynamic and neat. They're turned into nothing. They're a body, and that's it," she said.

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Information from: Daily Journal, http://www.thejournalnet.com