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Holding on to fading memories
By Denise Dick
austintowN
JoAnn and Barry Claycomb cuddle on the living room couch — photographs of them snuggling, smiling and laughing together hang on the wall above.
JoAnn lays her head on Barry’s shoulder, resting her hand on his arm.
“We’re in this for the long haul, baby. You are not alone,” she says.
Along with their birthdays, those of their children and their anniversary is another milestone day: May 19, 2009.
It’s the day that changed their lives forever — the day Barry’s wife, lover and best friend also became his caregiver. That’s the day Barry was diagnosed with Alzheimer’s disease.
Two months earlier, Barry lost his job as a machinist at a Boardman company.
“I would have my tools with me and then forget where I put them,” he said. One day he hit the wrong button and a piece of machinery knocked a 300-pound toolbox to the factory floor. He tried to catch it. The boss, afraid Barry was a danger to himself and others, told him to go.
He arrived home agitated and upset. JoAnn called the boss. His mother had suffered from Alzheimer’s and he saw similar symptoms in Barry.
“He said Barry couldn’t come back,” JoAnn said. “That he was unsafe. He had a job one day and no job the next day.”
Barry spent the next three days in bed. Then JoAnn had had enough.
“I went in and told him, ‘Get your butt out of bed,’” JoAnn said.
They prayed, asking God for guidance and putting it in his hands.
They went out to dinner that night — and celebrated. “We celebrated the beginning of our new life,” Barry, 66, said.
The official diagnosis came after an MRI and slew of questions, and a neurologist asking Barry to remember and repeat a series of words.
Barry wanted their two adult children and three grandchildren to hear it from him.
“He called the kids and sat them down told them, ‘I love you guys, but some day I may not know who you are,’” JoAnn said.
It was a time in their lives when they had envisioned traveling and remodeling their township home.
Now, JoAnn marks off the days on a calendar with big red Xs so Barry knows what day it is. Pill containers, one for day and one for night, help her ensure he takes his medicine on time.
They’ve spent the last year and a half visiting some of Barry’s relatives. He wanted to make sure he saw them while he still knows who they are.
They returned to Johnstown, Pa., where Barry grew up, allowing him to relive those memories.
The old days remain fresh in his mind. The disease fogs more recent ones.
They know what’s coming but don’t dwell on it. There are no guarantees, says JoAnn, 64.
Much of the time, Barry seems like his old self. They laugh and joke and Barry, a Mr. Fix-It, is still able to help around the house.
Recently, he planted a rose bed under their bedroom window. At first JoAnn hesitated because she worried about Barry’s using a Rototiller. The facilitator of her Alzheimer’s support group, though, persuaded her. If he never uses that Rototiller again, she said, it was worth the money.
“Now when Barry can’t go buy me a gift, when he can’t go shopping, he can go cut me a rose from the rose bed,” JoAnn said.
There are bad days though.
On some days Barry doesn’t get out of bed until 11 a.m. or noon. Sometimes, he sits in his chair all day with a cup of coffee, not talking to anyone. On those days, JoAnn calls him “The Other Barry.”
They talk about the future — about in-home care and nursing homes.
“I want to keep him at home for as long as I can,” she said.
When Barry’s disease worsens, they’ll deal with it.
“We laugh a lot but we cry a lot too,” Barry said.
She cries because so many people don’t understand the disease. They say Barry doesn’t look or act sick. They’ve lost a lot of so-called friends who avoid them because his illness makes them uncomfortable.
He cries for what he’s lost and will lose. He feels like a part of him is missing.
“It’s like my skin is there but there’s nothing inside,” Barry said.
The knowledge that one day he will no longer recognize the ones he loves tears him up. And he worries about JoAnn.
“I know that I’m a burden to her and I don’t want to be even more of a burden,” he said.
JoAnn dismisses that. For better or worse, in sickness and in health.
“But I got the better and you got the worse,” he said.
She scoffs again. He stuck by her despite her arthritis and diabetes.
For their 40th anniversary five years ago, JoAnn wanted to renew their wedding vows.
“People said, ‘Why 40th?’” she said.
She had no answer, but they restated their commitment to each other. She’s grateful they did. Barry may not see their 50th. He may not remember their 46th.
The disease has strengthened their commitment and their relationship with God.
In the first weeks after Barry’s diagnosis, JoAnn struggled with the notion that there may come a day when Barry won’t be able to put his feelings into words.
“It bothered me that one day I won’t be able to hear him say, ‘I love you,’” JoAnn said.
The couple went to the Build a Bear store at the mall and stuffed a plush purple teddy. Inside is a recorder where Barry left a message for his wife.
“JoAnn, you’re my favorite sweetie. Remember all the good times we had and remember I’ll always love you,” he says.
ALZHEIMER'S DISEASE
About 5.3 million people in the United States are living with Alzheimer’s disease, a disease of the brain that causes problems with memory, thinking and behavior.
10 warning signs of the disease:
Memory loss that disrupts daily life.
Challenges in planning or solving problems.
Difficulty completing familiar tasks at home, work or leisure.
Confusion with time or place.
Trouble understanding visual images and spatial relationships.
New problems with words in speaking and writing.
Misplacing things and losing the ability to retrace steps.
Decreased or poor judgment.
Withdrawal from work or social activities.
Changes in mood and personality.
The Alzheimer’s Association offers information and support for those who have the disease, their caregivers and other loved ones. The association may be reached at (330) 533-3300.
Source: Alzheimer’s Association Greater East Ohio Chapter.