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Getting the word out about Alzheimer's

/ Source: The Associated Press

Ethel Shaw was the quintessential grandmother, a retired schoolteacher who spent countless hours quilting baby blankets for her great-grandchildren and baking their favorite cookies — molasses or peanut butter.

One day she was on the phone with her granddaughter, Laura Asher, worried because she didn’t know what had become of her latest batch of cookies. Laura thought of motions similar to opening an oven door.

The cookies, it turned out, had ended up under a bed, slid back behind a dust ruffle.

Before Shaw died in June from Alzheimer’s disease at age 92, the effects of the progressive brain disorder were apparent.

Laura recalls weeping in the bathroom at a baby shower when she realized the toll the disease was taking on her grandmother. The pattern on a baby quilt from 1996, like the one just before it, had become confused, with dropped stitches and missing elements. By contrast, a 12-block Mickey Mouse design from 1991 shows flawless embroidery.

In the past, Alzheimer’s outreach efforts largely focused on getting information to care providers looking after those with the disease, said Stephanie Rohlfs-Young, director of outreach for the St. Louis chapter of the Alzheimer’s Association.

Today, the Asher family, like others around the nation, is using its own struggles with the disease as motivation to educate new audiences about it. Early detection can lead to treatment that can slow the illness, which afflicts 4.5 million Americans and is on the rise as the population ages.

“We used to think of Alzheimer’s as your grandmother’s disease,” said Rohlfs-Young. “But the disease affects every member of that family.”

Helping to find a cure

Even the youngest can make a difference.

Laura recalled the night last year when her 11-year-old son, Ian, by default ended up with her at an Alzheimer’s meeting.

“He heard the adults talking about ways to raise money and thinking outside the box and he said, ’What about kids and schools?”’ his mom recounted.

Ian began raising money last year at his Windsor school district, selling small, square pieces of purple paper with forget-me-not flowers printed on them that children could buy and post in their schools. A restaurant in nearby Barnhart, Ginny’s Kitchen and Custards, also started selling the forget-me-nots.

That effort and others Ian started, like an art contest, have raised about $5,000 to fight the mind-robbing disease for which no one knows the exact cause.

“I wanted to help find a cure for it, so nobody else has to have it,” Ian said, expressing some surprise that his efforts had caught notice. “I didn’t know anybody was paying attention to it outside of school.”

Pat Richard Sacco, a 65-year-old retiree in Port St. Lucie, Fla., still keeps plenty busy volunteering with the Alzheimer’s Association of Southeast Florida. Both of his grandfathers had Alzheimer’s, and he had worked with many families dealing with dementia.

About five years ago, Sacco was trying to comfort a woman as she admitted her husband to the nursing home where Sacco worked. He believes it’s often the best choice to let professionals care for people when families cannot, but recalled that the woman felt deeply guilty.

She had been sleeping on a mattress on the floor for about three years, hoping that if her disoriented husband tried to leave the bed, his movements would awaken her.

“I said, ’You go home right now, and get in that bed, and take a nap,”’ Sacco recalled. “I can see that little old lady at 4 a.m. crying, and she needs to know she can pick up the phone and talk to somebody.”

In addition to chairing a fundraising Memory Walk in his area, Sacco said his church, St. Luke’s Episcopal, has donated more than $3,000 in bingo proceeds to buy Safe Return bracelets and necklaces with identifying information that can aid in getting an Alzheimer’s patient back home. The silver-colored, metal jewelry can also alert authorities in an emergency if the wearer is a care provider, responsible for looking after someone.

In Ohio, Monica Magette chairs the Mosaic Council for the Alzheimer’s Association of Greater Cincinnati, which educates races and cultures about the disease.

Magette, 40, watched her mother care for a great-aunt with the disease, Leanna Grisby, even as her mom tended to two other ailing relatives in the home. Magette said there was much she didn’t understand about Grisby at the time, like her pack rat tendencies or an unexplainable feistiness from time to time. “Personally, I didn’t know enough to be more help to my mom and to aunt Leanna,” she said.

But now through the Mosaic group, in existence for about a decade, she works on multicultural outreach. Among the work, the group has speakers visit predominantly black churches and distribute fliers. Studies show blacks are at greater risk for Alzheimer’s.

More recently, the Mosaic council has reached out to Asian populations and teamed up with Hispanic outreach groups, using brochures translated into Spanish to provide more information about the disease and resources.

Carol Espelage, 64, who serves on the council, has made adjustments to help her own mother, who is struggling with a form of dementia. She does little things, like posting signs in her mom’s home, reminding her to eat between meals to keep her strength up, and helping her write up the weekly grocery list.

Joining the Mosaic effort “was like picking up the right book at the right time. It’s a harmonious, positive, uplifting thing,” Espelage said. “It could be just the opposite, but it’s not.”