This is a guest post by Ami Simms, a quilter, a national quilting teacher, author, and role model for all of us.
I invited her to tell us about her Mom and AAQI—the Alzheimer’s Art Quilt Initiative.
My mother was diagnosed with Alzheimer’s disease in 2001. What I knew about Alzheimer’s could fit in my thimble. I knew it was BAD, but I didn’t know it was an actual brain disease, or that it was progressive, or that it was always fatal unless some other disease got you first. I just knew that my mother knew something was wrong, and it scared her to pieces. We didn’t want it to be Alzheimer’s, but it was.
My father had died 17 years before and for 16 of those years my mother flourished. She traveled, had a wide circle of friends with a full calendar, and was active, eccentric, and happy. She enjoyed her independence.
By the end of 2001 she had moved in with us. Slowly the Alzheimer’s changed her. She forgot people and she forgot how to do things. She was still Mom for a long time, and I think she was happy for a long time, but it was so sad to watch her decline. She had sewn all her life. One day I saw her try to thread her sewing machine. She had flipped her Bernina on its side and was poking the thread in the bottom of the machine.
She couldn’t identify food (broccoli or French fry, she couldn’t tell the difference), and she couldn’t do the things she liked to do (gardening, sewing, traveling). She forgot she was a mother, although she knew I was Ami almost to the end. She died in 2008.
Watching someone you love go through this is so hard. It’s exhausting as you try and pick up all the pieces while you still try to care for the rest of your family, keep your job. It’s profoundly sad knowing that so much has been lost already and that it will only get worse. It is incredibly frustrating because there is no way to stop the disease.
Quilting helped me cope. By 2005 I realized that while I couldn’t work in a laboratory and find the cure for Alzheimer’s I did have some organizational skills, some talent with a needle and thread, and a network of quilting friends that I could parlay into something that would help. That became the Alzheimer’s Art Quilt Initiative (AAQI, for short).
The AAQI has two main parts:
- a traveling exhibit about Alzheimer’s and
- a program where we sell small donated quilts (9″ x 12″ maximum)
Almost $700.000—and 9 Research Grants
We have received almost 9,000 donated quilts! We’ve raised almost $700,000 for Alzheimer’s research, and recruited thousands of quilters across the US and abroad to help us. We have funded 9 research grants.
The Priority: Alzheimer’s Quilt Project was inspired by Virginia Spiegel’s Fiber Arts For A Cause for the American Cancer Society. Every “Priority Quilt” is registered, is assigned a number, and gets its own page on our website. On that page is the name of the person who made it, the designer, an artist statement, and a dedication. When a quilt is sold or auctioned the amount raised for the AAQI is noted on the quilt’s page.
Creating a quilt for a cause like Alzheimer’s, crafting a statement about the quilt’s meaning and why it was made, and then offering a dedication to the cause or a person who has/had this disease is a not only a powerful tool for raising awareness, it is cathartic and healing for the quiltmaker. It is doing something you enjoy doing and knowing that the work of your hands is helping fight this horrendous disease. It is often sad to reflect on the loss of someone you care for, but also empowering.
Effective treatment, proven prevention strategies, and a cure for Alzheimer’s has still eluded science, although we are closer than we have ever been. Research is under-funded and that research is critical. If you can thread a needle, you have the tools to help.
Quilts that raise the most money are quilts designed small, not parts or leftovers of larger quilts that have been quilted and bound. Create a quilt that has all the elements of good design (balance, contrast, movement, interest) and create it for a smaller “canvas.” Quilts may be no larger than 9″ x 12″.
Themes that have a wide appeal are best. Square up your quilt before you bind it and read our binding tutorial on the website. A caddy-wampus bed quilt isn’t easy to spot because you can’t see all the sides at once. In a miniature quilt “cock-eyed” is quite noticeable. Scale down the quilting motifs so they are appropriate to the smaller size of a Priority: Alzheimer’s Quilt.
Make a donation
And, you can bypass the quilting entirely if you just want to send a check. We’re a national 501(c)3 charity which means your donations may be deductible on your federal income tax returns. Check with your tax preparer.
Other ways to help
You can even help without threading your needle or opening your wallet. Join us on FaceBook or just tell people you know about what we are doing, especially if you happen to be a personal friend of somebody in the media. (Hint, hint!)
Ami Simms is the founder and executive director of the Alzheimer’s Art Quilt Initiative. She is also a national quilting teacher, the author of 9 books and numerous patterns, and was named Teacher of the Year in 2005. Ami lives in Flint, Michigan with her husband Steve and their golden retriever Scooter. She blogs at www.amisimms.wordpress.com