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 always...in 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 enough...in 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, too...no 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 lucky..in 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.
Note:
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!

11 comments:

  1. This little quilt is so beautiful, Michele. I've never seen the Prayer before; it brought me to tears. I have known those moments of a totally blank mind---no day, time, name, etc. It is totally scary, and I know it could be any one of us. We should all be so blessed to have someone like you to love us through it. You are such a beautiful soul, and I feel such joy in being able to call you my sister-friend. Hugs, dear heart.

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  2. What a beautiful quilt. I too have never seen the prayer before. Your posts always are so incredibly beautiful and thoughtful even when you are going through such a time has this. I agree with Angie, to have someone like you love us through would make such a different world. Love ya

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  3. The quilt is beautiful, Michele... and so areyour thoughts and feelings towards your mom and AD... My heart and prayers go to all of you suffering or with someone suffering from this disase...

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  4. Ahhh...what to say. A beautiful quilt, a beautiful life.

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  5. What a beautiful quilt an prayer. May the Lord bless your Mom and your family as you follow this challenging path. Such courage and love.

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  6. My mother died before the ravages of dementia took over her life, but seeing the fear in her eyes as she told me she didn't know how to get home from her favorite restaurant let me know that she was not ready to walk that path in her life. She died from lung cancer leass than a year later, so she never really experienced the loss of self, or rather my family never experienced the loss of her personlity. Your quilt is priceless and it combined with the author's statement should awaken anyone to the amount of love necessary to care for the stranger that will occupy a loved one's body after Alzheimers moves in. I am so impressed by your capacity to love.

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  7. A lovely quilt. The words of the prayer are so eye opening for those that have not had experience knowing someone with Alzheimers.

    You are doing a lot to bring education of this condition to light.
    xx, Carol

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  8. Oh Michele, I so can relate to this poem and your post- It made want to weep with you and then give you a big hug-
    It is a fear of all of us who have experienced the challenges of a loved one with Alzheimers.
    Thanks for another eloquent post.
    I hope that your pieces are viewed by a large number of people in Houston.
    Warmest regards,
    Anna

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  9. Oh, Michele, thank you for reminding us all that there are alway things to be thankful for - no matter what our situation.

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  10. thank you for this post, Michele. I too wonder if I will find myself in a chair, in an institute, being fed, not knowing my loved ones. It's only after you've walked the path of caretaker, I think, that you fully understand this horrific disease. The love and care that you give to your family is inspirational, as are your quilts. Thank you.

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  11. I wanted to leave a comment earlier, but couldn't see to write because of my tears. As you know, i can relate. Like Jody says, when your walk the path, you understand. Your mom is so lucky to have you. Your quilt is beautiful. I have never seen that prayer before. It is beautiful too. God bless you and your loving family.

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Michele Bilyeu blogs "With Heart and Hands" as she journeys between Douglas, Alaska and Salem, Oregon.