By Peter Berger
Special to Alzheimer's Weekly
Week of Oct. 7 - Oct. 13

Aylene Henderson-Bolds is best described by her daughter, Jean Bolds, as “a homemaker.” “The aroma from the kitchen met you at the front door and you couldn’t wait to eat!” recalled Jean Bolds of San Pablo, CA. But, when Aylene Henderson-Bolds began progressively showing signs of Alzheimer’s disease, roles became reversed. While caring for her mom was sad, Jean Bolds said, “It was the most important demonstration of love I could ever do for her,”

Now, Jean Bolds has demonstrated her love in yet another way: She has fittingly patched together some of her late mother’s food-stained aprons to create a quilt panel for the Alzheimer’s Foundation of America (AFA) Quilt to Remember. The grand-scale quilt pays tribute to those affected by Alzheimer’s disease,  related dementias, their caregivers and healthcare professionals..

The colorful panel will be among approximately 100 other panels on display. The exhibit is made of large panels crafted by individuals, including some with dementia, and organizations across America.

Since AFA announced the AFA Quilt to Remember in late 2005, more than 350 individuals and organizations from coast to coast have made commitments to submit panels; those created by individuals measure four feet square and those from organizations are eight feet square. Typically, the panels were creatively decorated with family photos and other appliqués reflecting a person’s hobbies, career or other details. AFA unveiled the quilt of large and thought-provoking panels for the first time last November in Central Park in New York City, drawing hundreds of visitors over two days.

Consisting of emotional and creative panels crafted by individuals and organizations across America, the Quilt to Remember’s  objectives are to  bring the issue  of “care in addition to cure” to the national stage, and highlight the enormity and reality of Alzheimer’s in an unprecedented way.

“Each panel tells a person’s story in a unique way and speaks for those who can no longer speak for themselves. By bringing these stories to life, we hope to raise awareness of Alzheimer’s disease in a very powerful and very real way,” said Eric J. Hall, chief executive officer of the Alzheimer’s Foundation of America.

“The most incredible thing about this project is that you feel the amount of love, compassion and care that these panels hold,” he said. “The project enables us to put a face to this disease, letting the world know in a powerful way that individuals with the disease are someone’s mother, or someone’s father, sibling, child, or loved one. Each panel is a celebration of someone’s life,” Hall said.

In addition, Hall said, “Our goal is to raise awareness. As an aging nation, we can’t hide from the fact that the incidence is increasing and that families are in dire need of support services and understanding.”

Rollout of the AFA Quilt to Remember comes at a time when the incidence of Alzheimer’s disease is escalating nationwide. It is estimated that more than five million Americans have Alzheimer’s disease, including one in ten aged 65 and older and nearly one in two aged 85 and older. It is expected to triple to 16 million by mid-century.

A West Coast display marked the third stop on the 2007 tour of the quilt; the massive arts project will also be showcased later this year in Philadelphia on October 26-28 and in Garden City, NY on November 2-4. Afterwards, it will travel to other cities for years to come as it continually grows in size with new contributions.

Novartis Pharmaceuticals Corporation is the presenting sponsor of the 2007-2008 tour of the AFA Quilt to Remember. UPS is the transportation sponsor.

“Having pioneered early breakthrough treatments for Alzheimer’s disease, Novartis is committed to addressing the unmet medical needs of people with Alzheimer’s disease,” said Alex Gorsky, Head of Pharma North America and Novartis. “By partnering with the AFA to bring the Quilt to Remember to local communities around the country, we hope to raise awareness of Alzheimer's disease and the impact the condition has – not only on patients, but also on their loved ones who care for them.”

For Brenda Smart of San Diego, crafting a quilt panel, bordered in colorful hearts, brought back fond memories of her father, Richard Tate. It could not be a more fitting tribute, she said.

“On my 16th birthday, my father asked me what I would like. I asked if I could have a homemade quilt that was sold in a local fabric store. It was expensive and a little extravagant for my father’s budget. To my surprise, he purchased the quilt for me. I’m not sure if my father knew how very important that quilt was to me,” she explained. “I love honoring my dad by submitting a quilt in his remembrance.”

Her patchwork quilt for the AFA Quilt to Remember consists of colorful hearts, mirroring the very same design of the quilt her father gave her. “Although torn and tattered, I still have that quilt today,” said Smart, now 50.

At a recent display, the creative and colorful panels sewn by individuals and organizations across America drew emotional reactions and tears from visitors. After traveling by train with her husband and young grandson, Pat Clarkson of Wyandotte, MI described it as a "powerful experience" to re-visit the panel she quilted in memory of her father.

"It means so much to me. I wouldn't have missed this," she said.

Similarly, Susan Thiel of Grayling, MI came with her family so they could see the quilt she made in memory of her grandmother, Frieda (Thiel) Schimmer. Her hope is that the project will help other families better understand the disease.

“Our family didn’t have the heads-up to understand Alzheimer’s disease early enough to make it easier,” she said. “If people start seeing [the quilt], they’ll ask the questions. I hope this will call more attention to the disease so people recognize the symptoms and realize there are services out there to help.”

When Kristi Burcham of Avon, IN was growing up, her aunt, who lived around the corner, taught her how to sew and do needlecraft. It’s a memory that sticks in her mind, especially since Alzheimer’s disease robbed her aunt, Virginia Wright, of her own memories.

And it’s one that prompted Burcham to create a lasting tribute to her relative by contributing a panel. At the center of her panel is an unfinished quilt that her aunt had been making for one of her granddaughters. “She [had] always been an excellent seamstress and [had] made many beautiful things. I just can’t think of a better way of honoring her,” said Burcham.

Other contributors, who include quilters and those who have attempted the craft for the first time, have woven powerful personal themes into their works of art. Honoring her father, Rebecca Romano of Edna, TX included symbols of the United States Navy to recognize her dad’s military service. “I never got to do anything quite like this for my dad. I can’t find the words how it made by heart feel,” Romano said.

When she showed it to her father, Elton Lee Haley, she recalled, “He didn’t know it was for Alzheimer’s, and he just cried when he looked at it.”

The Council for Jewish Elderly (CJE), a member organization of AFA in Evanston, IL, recruited six of its branches, including adult day services, long-term care settings and independent housing, to each create squares that were then stitched together into one large panel. Everyone from staff to caregivers to individuals with Alzheimer’s buzzed with activity—designing, painting, coloring, and gluing down sequins, glitter and yarn.

Individuals with dementia were a major component of the quilting team, according to Judy Holstein, a CJE director who spearheaded participation in the project. Activities coordinators were given off-white fabric to use as the backdrop and were instructed to let self-expression run wild.

“This project is giving people a chance to put their artistic imprint on a national project that speaks about and for Alzheimer’s disease,” she said. “For those with dementia, the hands-on, multi-sensory experience gives them meaning for their day and ultimately their lives. When their creativity is evoked, that’s a gift, and that’s a wonderful thing to do for their quality of life and self-esteem.”

So taken with the project, CJE participants have already made a total of 70 softly-colored patches, ranging from fish to abstract designs, and they are still going strong. The extra squares will be on display throughout CJE.

The initiative has also offered caregivers the opportunity for quality time with their loved ones. “We haven’t done something like this together for a very long time,” said Fran Hoeffler, referring to working on a shared project with her husband, who has dementia.

Noted Holstein: “For that moment in time, his illness disappeared for the two of them.”

Diana Budke of Manito, IL has tapped her quilting expertise to create a colorful patchwork that honors her mother, Leona Hony. The panel captures details of her mom’s life, including buses to represent her occupation as a school bus driver and doves to “represent Mom and how beautiful and fragile she is becoming,” said Budke.

For Michelle Sharko of Saint Charles, IL, the AFA Quilt to Remember offers a vehicle to remember her grandmother, Claire Speh. In her application to submit a panel, Sharko wrote, “My grandmother is the most giving, loving, generous person….I do not know much about sewing, but I will learn and make this in her loving memory.”

More Information:

The quilt will continually grow in size with ongoing contributions. AFA will continue to accept quilt panels and plans to lay out the massive project in additional cities in the coming years.

For tour details, to create a quilt panel, or see a video, visit http://www.alzquilt.org/.

To speak with someone about the AFA’s Quilt to Remember, call 866-232-8484.

The Alzheimer’s Foundation of America is a national nonprofit organization headquartered in New York and made up of hundreds of member organizations that provide hands-on programs to meet the educational, emotional, practical and social needs of families affected by Alzheimer’s disease and related illnesses. AFA’s services include a toll-free hot line, counseling, educational materials, a free caregiver magazine, and professional training. For information, call (toll-free) 866-AFA-8484 or visit http://www.alzfdn.org/.

Copyright:

© 2007 Alzheimer's Weekly LLC. All Rights Reserved.