This is a quilt about fear, specifically about the fear a person feels when they realize their mind is not working right. When they can't think straight. When they can't remember the simplest things. My Dad has Loewy Body Disease, a variant of Alzheimer's tied to Parkinsonism. The symptoms are very much the same as any other dementia.
This 9"x12" quilt will be donated to the
Alzheimer's Art Quilt Initiative, a 501(c)(3) organization raising money for Alzheimer's research.
As my family struggled through the early stages of the disease with Dad it was sometimes hard to remember that the motivation behind all the paranoia, anger, frustration and irritability was plain and simple fear. Try to imagine the devastating horror a person must go through as they get the diagnosis, and then realize that they are no longer capable of handling day-to-day situations. Imagine you can no longer remember names, and later, no longer remember the relationships. Strangers all around you, trying to get you to eat, take pills, take a shower, put clothes on. The disease progresses and there are only flashes when you realize with terror that you have no idea what is going on. The natural reaction is to find somebody or something to blame it on. To find a reason, other than that you are losing yourself, for this craziness that is happening.
I feel physical pain in my heart when I think about how terrifying it must have been for Dad to feel himself slipping away and be powerless to stop it. I get sick to my stomach when I think about the heriditary links and realize that I or one of my siblings may face this fear someday.
These days my Dad is beyond the fear. His irritability now stems from not being able to reason through why somebody is asking him to do something. As sad as it is to see him looking at me with blank eyes, I am glad he is no longer afraid. And there are those wonderful moments when he looks at me with love in his eyes, no longer knowing who I am but knowing that he loves me. When he smiles or reaches out for a hug. As horrible a price as he has paid for this "peace", I am glad it is finally his.
This is a section from the first of two 6" wide by 7' long name quilts I'm quilting for the AAQI new exhibit Alzheimer's Illustrated: From Heartbreak to Hope. The two I'm doing will hang with 180 others, each bearing the names of 55 people who have or have died with Alzheimer's or a related dementia. I got the names for my two quilts, plus a few extra's from two places. A great many of them came from the Mather Pavilion in Evanston IL, where I volunteer on one of their two "special care" floors. The others I got from the Good Samaratian Home in Lodi WI, where my Dad now lives. I got many of the names from the Activities Directors of both institutions - who were familiar with many names of people who had lived there in the past, so I was able to tap both past and present residents.
