Accepting the inevitable

Editor's note: This is the third in a three-part series that explores the lives of families touched by Alzheimer's. This incurable and frightening "silent epidemic" affects many people in our community, from the patients losing themselves to the loved ones who watch them slowly disappear.

COEUR d'ALENE - As Barbara Powers walked through her Coeur d'Alene home, she pointed out the extensions, changes and safeguards she implemented to provide a danger-free environment for her husband, Pat.

"When I remodeled, I just gutted everything," she said. "One thing with Alzheimer's, he liked playing with things and he was a smoker and started a fire when he moved back in."

Pat, 73, was diagnosed in 2008, but Barb remembers first verbalizing it in 2005.

"The first thing I noticed, he used to always say, 'Is it Tuesday?' because that was the day he did payroll," she said. "I'd be like, 'No, it's Thursday.' He couldn't remember if he paid the staff or not. He was always concerned about taking care of the help. He couldn't keep his days straight. And then he'd get lost."

Barb, 59, married Pat in 1991. She described him as a "man's man" - he was a sportsman, an Army veteran, a business man, a fellow everybody admired.

"Everyone loved Pat, he was so funny and smart," she said. "He was such a cool guy."

Pat was a founder of The Exchange, a weekly classified newspaper based in Spokane, where Barb is a co-owner, manager and publisher. She credits him for her success, and the very job to which he introduced her helps keep her sane while coping with his advanced condition.

"There is no way I could do this if I didn't work, if I didn't have some outside stimulation," she said. "Pat and I used to have so much fun, and laugh and talk. I think that's the thing I miss so much, is just sitting out and talking. There's no talking, there's no, 'Hey, how's your day?' He'll jabber, but there are no conversations and haven't been for a long, long time. I don't know how women do it on their own."

Pat's dementia is accompanied by Lewy bodies, which keep him constantly shuffling and exhibiting other movement symptoms. He gets into things and unintentionally causes mischief, especially as the sun begins to set. Barb has checked him into care facilities, but decided to bring him home when prices doubled.

She has watched Alzheimer's chip away at Pat, from the initial stages of acceptance to the loss of his ability to converse and take care of himself.

"People don't realize, he knew what was going on. He definitely knew what was going on," she said. "He'd get really frustrated, and he'd say, 'I don't know what went wrong.' We never called it Alzheimer's, we called it dementia, which is the big umbrella for it. Then we started calling it 'George,' we gave it a name. It was hard. One day I came home and he was lying face down on the lawn just bawling, and I think it just hit him."

Pat would take things apart and not remember how to put them together. He sometimes had violent outbursts or bouts of paranoia and he would wake at all hours of the night. It was hard for both of them. Many of their friends stopped calling because it was rough on them, too.

"It's not him, it's not Pat, Pat's been gone a long time, and I think that's been really hard on some people," she said. "And that's OK; I'm not bitter about that."

When Pat was first diagnosed, he and Barb traveled and had fun biking, boating, swimming and doing whatever they wanted. Barb said she is thankful for the opportunity to make those memories.

"I knew that he was never going to get better, it was going to get worse and worse and worse, and I didn't know how to come to grips with it," she said. "I just kind of put everything on hold."

She said the first stages of his Alzheimer's were the hardest and the worst is over. She's an "old hat" at it now - she remodeled the house, hired caregivers and learned how to live life one day at a time.

"Once I accepted the idea, it's like, 'OK, what am I going to do about it?' This is what I did about it. OK, jump in there and deal with it," she said. "Our future is inevitable, you know, he's going to die, and it's not if, it's when. I hope it's not years and years of eating mush and being bed-bound. I know it's grim, but that's the reality of it."

Barb wakes up every morning and says "thank you" for the blessings in her life. She has learned to manage their lives with the help of the Alzheimer's Association, friends, family and caregivers.

"You do have a choice, you have a choice to be happy or sad, you have a choice of what you focus on," she said.

Barb has cried her tears for Pat and their life together, but she is moving forward and has made peace with the way things are. She strives to maintain his dignity while not losing her own sanity.

"He's not dead, but you never get to say goodbye," she said. "It's that long, long goodbye. You never get to grieve. You're constantly losing part of that person.

"I'm happy we had our time together."

About Alzheimer's

• Late-stage Alzheimer's may last for weeks or even years. As the disease progresses, 24-hour care is usually required. According to the Alzheimer's Association, people in the late stage have difficulty eating and swallowing, need assistance with walking and will eventually become unable to walk. They also become vulnerable to infections such as pneumonia and lose the ability to communicate with words. Difficulty with toileting is common and they may need guidance through the process. Although it is difficult for those in the late stage to express needs, research shows that some core of the person's self may remain. It is estimated that by the year 2025, 33,000 Idahoans will have Alzheimer's. Info: www.alz.org, (208) 666-2996 or (800) 272-3900 (24 hours, seven days a week)