Patching Together Memories

Alison Berger was only a young child when her grandfather, Michael Steinberg, was diagnosed with Alzheimer's disease. Before his diagnosis, Berger remembered that he liked gummy worms and would sing the song "Button Up Your Overcoat."

"Of course, it would've been wonderful if he didn't have the disease," said Berger, 27, a research assistant. "But I feel like I was lucky enough to have those few years before he did get it."

But after working on a quilt panel in honor of her grandfather for the Alzheimer's Foundation of America Quilt to Remember inaugural showing in Central Park, Berger learned things about him that she never knew. On weekends or after work, Berger and her mother, Bess Berger, would lay out the 4-by-4-foot panel on the dining room table or floor in their home in Norwalk, Conn., and look through old photographs of Steinberg.

"We'd be looking at pictures, and different stories would come out," said Berger, whose aunt, Carol Steinberg, is the executive vice president of the AFA. "And we'd be laughing. And then there would be some times where we might get a little sad."

The quilt panel was just one of more than 100 that traveled from city to city since the AFA Quilt to Remember began in November 2006. This year's tour ended in Garden City, N.Y., in early November after stops that included Philadelphia.

The Quilt to Remember was created by Eric J. Hall, the founding chief executive officer of AFA, who was inspired by the AIDS Memorial Quilt that he saw displayed in Washington, D.C., as a teenager. Hall said he hopes that all the panels presented "side by side" will raise awareness for a disease that is often neglected.

"Because of its impact, the population is really truly not able to speak for itself," Hall said. "As it grows and as there are literally hundreds of more panels I estimate contributed, there's this opportunity of actually showing the vast problem that this disease is."

Five million Americans suffer from Alzheimer's disease, but "only half are diagnosed and treated," according to Dr. Gustavo Alva, the medical director of ATP clinical research.

"Often times people dismiss the aspect of short-term memory problems," said Alva. "Alzheimer's should not be looked at as an illness of shame or one of denial anymore."

The AFA received the first quilt panel in fall 2006 and has approximately 345 applications for panels in addition to those already completed, Hall said.

As of June, the quilt covered over 7,500 square feet, and 46 organizations have joined in the nationwide event, according to the AFA.

The Council for Jewish Elderly's Adult Day Services, based in Evanston, Ill., contributed an 8-by-10-foot panel with about 80 squares from the agency's many departments. It took nearly three months to put together and was displayed at the tour's Chicago event in May.

"Most of the people who participated in this have some form of dementia, and some actually have Alzheimer's," said Sheri Wishnia, the assistant program manager of the organization's adult day services.

"It gave them a chance to express themselves and to display some of the artistic creativity that they have. And it was a raising of their self-esteem."

Many of the individual quilt panels also paid tribute to the lives Alzheimer's patients once led.

Carmen Serrano, 42, of Philadelphia, fondly remembers the days before her mother was diagnosed with Alzheimer's nearly 20 years ago. Almost every weekend, her mother would wake up at 6 a.m. and blast mariachi music from the stereo, "but Alzheimer's took that away," read a poem on the border of Serrano's quilt.

"In caring for her especially the way I do — so dedicated, so loyal and so fiercely because you got to fight all the entities involved — I have gotten to know the purest love," Serrano said.

Serrano presented her quilt and read the poem at the Philadelphia exhibition last month. Even though the many panels were a somber sight, she did gain a sense of hope from the display.

Berger and her mother used objects to symbolize different aspects of Steinberg's life — feathers around the border for the feather that he would wear in his hat; two poems on fabric he made for his wife; a family tree; and, lastly, the quilt's material, which was taken from a blanket cover Steinberg had made.

"I really felt that he became a part of the quilt by doing that," said Bess Berger. "It was truly a living family quilt because everybody that was important in his life, including himself, had a part in it."




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