Alzheimer's Caregivers: Families Struggle with Disease

As memories fade, families cope with lost income and emotional toll.

Oct. 19, 2010— -- In every hard journey through the shadowlands of Alzheimer's, there is always something else that abides. Something even the shadows cannot darken.

There is life, beauty and abiding love. You can see it in a painting, a needlepoint angel, or a dance. And you can see it around the breakfast table at the Jones family home in Fort Lauderdale, Fla.

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Mornings at the Jones house are a hectic affair. Daughter Natalie has to get to second grade, wife Laura has to get to work. And husband Jay, just 53 years old, has to live with Alzheimer's. He was diagnosed seven years ago.

"Who would ever expect that a 46-year-old man would have Alzheimer's? It was just completely shocking," said Laura Jones.

Jay Jones is one of 500,000 Americans living with early-onset Alzheimer's, cases in which the disease strikes before the age of 65. There are still plenty of bright moments for the Joneses, but there are also flashes of the isolation to come.

"For me, it's like seeing my husband, someone that I love, he's in quicksand, and I can see the fear in his eyes," said Laura. "I can't reach him. I can't get there. I see him slip a little further, and I can't get to him."

Besides the emotional toll, the disease has brought real financial hardship. After Jay lost his job, Natalie, 7, had to move to a new school. Laura holds down a part-time job as a training consultant for an aviation software company, though she makes just a fifth of her husband's old salary. Still, she refuses to dwell on the future.

"All it does is make me weak, and I can't afford to be weak at any moment in the day," she said. "I don't live in fear. It's a waste of time."

Holding On To Precious Memories

Time is so precious for every family touched by Alzheimer's disease. My mom, Margie Lou Moran, tried to hold onto life's precious meaning as she slipped into Alzheimer's. She would repeat the names of her ten children over and over again, trying to keep the memory alive.

"That was one of the last vestiges of the memory, that she could name us all off, even though she had no clue who we were when we were in the room," said my big sister Peggy.

Mom died ten years ago, but Peggy has kept some of her needlework. It was one of her passions, and she took pride in sewing angels for her grandchildren. We all watched as her ability faded along with her mind.

"These kind of, to me, have always shown the progression of the disease," Peggy said as she showed me some of the needlework again. "This one she made for [granddaughter] Rebecca. You can see how small and well done this is. But by the time she got to [granddaughter] Margarita, she was into this much more coarse-looking work."

Whether coarse or fine, the stitching was a gift of love. And love is who we are.

Husband's Touch Brings Back Fading Memories

Sol and Rita Rogers have been married for 63 years. Sol, 91, began losing his wife to Alzheimer's, but he refused to let go.

"I couldn't talk to her. And she didn't know who I was," Sol recalled. "That was a terrible thing."

He started getting into bed with Rita at the nursing home -- touching her and singing to her.

"She became a new woman. She knew who I was, she could talk and smile and laugh, just like overnight," he said.

That is Alzheimer's, too, and that is the hidden gift for those of us touched by the disease, what we know:

Even in the shadows, there is always love.

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