Alzheimer's Illustrated: From Heartbreak to Hope
In a life filled with challenges, with so much heartbreak...and yes, still filled with so much hope...it was such a heart touching experience to finally view for myself, the amazing Alzheimer's Illustrated: From Heartbreak to Hope traveling exhibit of the Alzheimer's Art Quilt Initiative (AAQI)
These small art quilts are hanging among 182 "Name Quilts," each 6 inches wide and 7 feet tall, which carry the names of more than 10,000 individuals who have/had Alzheimer's or a related dementia. The names of these loved ones, written on fabric patches by family members and friends, honor the 5.4 million Americans in the United States struggling with Alzheimer's disease.
As a volunteer for AAQI, with **13 family member names among the "Name Quilts" and two of my own small format art quilts among the 54 art quilts, I felt so personally connected to both this cause, and to this exhibit. Perhaps, that opinion is based on my having two of my own little small format art quilts on display, and the pride that I felt also viewing the two quilts from the members of my AAQI Liberated Quilting Challenge group, as well as the overall pride I feel from ALL of the quilts that my challenge group members have created and donated to this amazing cause!
As I wandered through the maze shaped exhibit, I found myself both slowing down to truly feel the raw emotions the quilts evoked, and then speeding up to not have to feel them so painfully and personally, each and every step of the way.
You have to allow yourself to feel, but keep from going into the sheer tragedy of this disease and what it has done to your loved ones, yourself, and the dynamics of the entire family. And trust me, this is something that cannot be explained, but only felt through the tears, and the ripped out and torn seams of the inner heart.
My first 'go through' was a quick one. We were early, and there were few visitors as I headed to this exhibit first. But the lovely and gracious docent, Sue, who was just plain 'great Scot' awesome at what she does, and the magic she contributed there, immediately connected with us, listened with an open heart to my own story, and before long, there was a group gathered around me... to 'over hear' and 'over heart' my story.
I had just spent months in Douglas (Island) Alaska, caring for my mother (then in her 6th year of advanced Alzheimer's) and my father (who had two silent heart attacks during this period and was beginning vascular dementia) and myself, who slipped on the worst black ice in Juneau-Douglas's history, and not only broken my wrist in three places...but slammed three wrist bones into my forearm.
I had immediate surgery, the implantation of a titanium plate and 10 screws, and I just kept on going. Because, that is what Alzheimer's Disease forces us to do. It takes so very much away from us, and all we can do is cope with its ravages, day by day, bit by bit, until it all becomes a painful blur and we almost forget how incredibly challenging it is. There is not even time to feel sorry for yourself when all the focus must be on those you are helping and the horrors that happen amidst family members through all of the stage of denial, and grief....to acceptance.
I had cared from my parents for several months, cooking, cleaning, giving shots and pills, and doing laundry with just one hand and a bit of the other arm's elbow...before I returned home to Oregon in mid-March and other family members came in to take over.
Without any time for physical therapy, I simply quilted to get my arm working again. Ami Simms had already challenged all of us to submit quilts for potential inclusion in the newest traveling exhibit and at first, I thought...
"How could I possibly sew anything? I only have one good hand and wrist?"
But then I realized how truly ridiculous that was! I had already worked every minute of every single day with that one hand and one arm, doing things that others wouldn't even have thought of trying. And now, at least, I was out of the stiff velcro'ed 'cast' since surgery and I was supposed to use this hand as much as I could to get it to working again. My AAQI quilts were the result of that therapy. From mid March to December, I made and donated 10 quilts and these were among those 10.
That they had been made 'then' and with my wrist, hands, and actually the entire arm in this state...was an aha moment for me during this exhibit. How could I possibly have not realized this before? That is how the mind focuses on surviving and doing, and not running and trying to escape the horrors of all it all. And by that I mean my mom and the Alzheimer's Disease, and my dad preparing for his death in mid-August. I needed to be present for them, as I do now, for my brother and my sister-in-law and their challenges, so I just simply do what I need to do and don't focus on how hard it all is!
What this has all taught me..the doing, the being, and now the finally, really, really 'seeing' was huge for me. Not only was I not alone on this winding maze of a path, but I was a survivor who was making it to the end of its journey.....one way or another. But I was making it.
So, whether I am in Alaska, helping my family, or in Oregon helping my family, or now, in Oregon helping my Alaskan family....I'm still somehow doing it. And right now in Oregon, I am the only one helping them in many ways, as it has proved too hard for everyone else to find the time, much less deal with the constant emotional drain. I hate driving on 8 lane freeways, I hate getting lost over and over in big cities as I try to bring my S-I-L to visit my brother in his fourth month of hospitalization. It is hard visiting my almost 97 year old mother-in-law for two hours a day for the past 8 months..especially now when she has been admitted to hospice. But I just do it!
It is just another challenging maze of discovery, just another series of art quilts in the making in my own life's journey!
As I looked at this Heartbreak to Hope display, than awareness made me feel so strong, so proud, and so capable. I had made them..these two little art quilts..during one of the single most challenging and painful years of my life....and I had done it with one strong hand.....and one healing hand.
This maze, this walking through the journey of awareness, has dark walls, but there were so many spots of bright color, of clarity, of awareness, understandings, and sometimes even of joy.
We all see and face many, many walls...but some hold up symbols of our progress and our strengths, as well.
Here is my first quilt on my own first wall...
And below, my second quilt on my second wall....
Michele Bilyeu: My AAQI small format art quilts that are included in this exhibit.
(postscript: * I created and donated and sold75 by the end of AAQI in December of 2013 with all profits (over $4,500 for my quilts and over $1,000,000 from the combined total of all of our fundraising efforts from 2006 through 2013) from all of our AAQI quilts going to Alzheimer's research funding)
Among the 47 quilts that I have donated so far,are two of my quilts that I feel so very blessed to have on display as part of this traveling exhibit. They are:
Michele M. Bilyeu
Salem, OR USA
Artist's Statement: Like my mother's memory, this art quilt consists of many layers, tangles, and threads...with spots of clarity and light hidden amidst the colorful (but often chaotic) surface layer.
Dedication: For my mother who continually pushes through the advancing layers and tangles of Alzheimer's with infinite grace and humor.
#6399 - The Alzheimer's Prayer
Salem, OR USA
Artist Statement: I grieve for the loss of my father, and honor his strength, determination, and fortitude in helping my mother face the challenges of her Alzheimer's. He lovingly cared for her, helped her to retell those memories she still retained, and brought forth the bits and pieces of her fragmented life. With this quilt and my own prayers, I pray that other care givers will have the same love and devotion that he had and care for their patients and loved ones, as the people they truly are...and not just who they seem to have become.
Dedication: In honor and memory of my father, a loving care giver, and with the deepest love for my mother who is now in her fifth year of Alzheimer's. In spite of being blind, diabetic, and unable to walk, she still reaches out her heart to us with love.
**the 13 purple name strips of my own family members include both parents, and 11 aunts and uncles with all kinds of Alzheimer's and Dementia s (did not include the two family members by marriage, and not DNA)
Michele Bilyeu blogs With Heart and Hands as she shares a quilting journey through her life in Salem, Oregon and Douglas, Alaska and all of her AAQI Quilting. Sharing thousands of links to Free Quilt and Quilt Block Patterns and encouraging others to join in the Liberated Quilting Challenge and make or donate small art quilts to the Alzheimer's Art Quilt Initiative (AAQI) Help us change the world, one little quilt at a time!