Thursday, November 03, 2011

Our Prayer

I woke up this morning and couldn't remember what day of the week it was, or even what year it was. And for just a moment, I felt a bit of panic.

I'm sure we've all had those moments in time and space where suddenly we can't remember the day of the week, which holiday is coming up next, or if we remembered to turn the iron off before we left the sewing room and went off on a long shopping trip.

But what would it be like to never know what day it is, if five minutes have passed since you last ate, or who the family member is that is talking to you and asking you questions you don't understand? That is what Alzheimer's is like.

My mother has lived in this state for the past six years. It has made our own lives very, very challenging and at times very, very scary. There are things that I have experienced and learned about this disease and what it does to families that are invaluable lessons. But there is the back of my own mind..the thought that this could be me, some day..and it could become permanent.

As my mother lays in her bed, or on the couch, or once in a while if she is strong her recliner, she lives in an altered state of consciousness. An outsider seeing a person in this state for the very first time, might be both saddened and horrified at what A.D. truly looks like in an advanced stage.

There are very few things she can now do physically, and very, very little that she can actually 'remember' yet there are things that I am still so very grateful for. She no longer has even one single worry, not one single longing, not one single missing of who, or what, she once was.

She no longer has the constant pain of diabetic neuropathy in her feet or legs, the bone pain of osteoporosis or scoliosis of her back, or even the arthritis of her 86 year old body.

She no longer laments the severe cataracts or macular degeneration of her retinas that has made her legally blind. She no longer longs to see more than shadows as she looked at a new grandchild's face or any of her own five children's faces or to see the enlarged family photos that I used to print off for her and make into 'memory' books for her.

Instead, she's actually surprisingly content in this new state of being that she lives in. It's all of us, as her care givers, that have such a hard time with the changes and the loss we feel. And it is all of us who have to cope with the ravages of this horrible disease and what it has done to her and what it once did to our other loved ones who have since passed on.

Yes, her legs are so severely contracted now that she is almost in a fetal position. When I was there in April, I would move and do simple physical therapy with her limbs every morning. Now, I am told they do not want to bend or straighten at all.

It takes great concentration on some days for her to get food into her hands and then into her mouth. But she laughs as she does it and wonders out loud what it is that we are putting in her hand or in her mouth. And because she can laugh, we can laugh with her, as well. And we love still having joy and sharing that ..even for brief minutes..with her.

We love her for all that she was, and we miss that so much. But really and truly we can still completely love her as she is now, matter how strange that might seem to others.

Her spirit is still there, still strong, still even witty and fun for us. And my prayer is that others who come to visit her, might still be able to see her as I do...the good and wonderful things and not just what this human form appears to be.

And so as I made this little art quilt for the Alzheimer's Art Quilt Initiative, I used a copy of the Alzheimer's Prayer ....*by that famous anonymous *...for the second time this year..knowing that all it asks of others as they look at someone with Alzheimer's is all that I would want if others were to come to visit me as I might lay in my bed, or on my couch, or if I was my recliner.

The Alzheimer's Prayer is currently being shown at the Houston International Quilt Festival as one of many of my quilts that I know for sure made the journey with the Alzheimer's Art Quilt Initiative to be displayed on the wall there. Our quilts will be up from Nov. 2-6th...Exhibit Hall, Row T, in the front.

But many more are available on the AAQI website including our fabulous November 1-10 auction AAQI Stanley Cup Quilt Off featuring some very famous quilters and some super amazing quilts! If you attend, please check it and all of the other quilts out and please make a bid or buy one in so many mother's memory and honor.

 6956 The Alzheimer's Prayer

Michele Bilyeu
Salem, OR USA
Width: 9" Length: 12"
Materials/Techniques: Wax batiks and ink jet printed verse on cotton, fused and raw edged applique with glass beads and free motion quilting.
Artist Statement: We learned to be strong and independent from our father and to always care for one another from our mother. Our father passed in the fall, and now in the rebirth of the spring we take our turns doing the work he once did. No matter how challenging it is that our mother is now blind, diabetic, and cannot walk...we do as he did. We love her, care for her, and treat her as the woman we once knew and not this quiet shell of a woman that she has become. We are her only caretakers in our island home in Alaska...but we care for her with all of our hearts.

Dedication: For our mother, who is in her sixth {now 7th} year of advancing Alzheimer's. May we always remember how much we truly love you, how much you gave to each of us, and that you are so deserving of our love, caring, patience, and deep respect.
And check out all of our AAQI quilts for sale and at auction every month at . All profits go to research funding for Alzheimer's Disease. This little quilt is heading for Houston, along with five more of my little art quilts for the Houston International Quilt Festival where it will be available for purchase along with many, many others..Nov 2-6, Exhibit Hall, Row T, in the front)But many more are available on the AAQI website including our fabulous November 1-10 auction AAQI Stanley Cup Quilt Off featuring some very famous quilters and some super amazing quilts!