I am a child of Alzheimer's Disease. And as such, I walk a long and challenging path that leads to a grim certainty. I will most likely, based on current statistics, someday face Alzheimer's, myself. And based on the way it has compromised and effected my own family, I will be a challenge..to myself, to my family, and to society...and even because of the medications and often nursing home care...to our health care system, as well.
So, I have determined that as much as it is within my own limited power and control, I will do my best to take care of myself, my family, and to contribute to causes that increase our chances, and hopes of a treatment (or a cure!) in the years ahead.
When I realized after two years of helping my parents face my mother's descent into A.D. that there was something I could do besides actively, physically helping her and my father, I made some small art quilts for the Alzheimer's Art Quilt Initiative. These quilts are auctioned or sold directly, with money earned contributing to grants and therefore funded research into Alzheimer's Disease.
I made half a dozen little art quilts in two years, while still flying north to Alaska regularly to help out. Each trip was incredibly expensive ...and unbelievably exhausting. Suddenly, an amazing amount of my energies were going directly into coping with my mother's A.D. It was overwhelming...to me, to my father, and to my mother. But we each did the very best that we could and we became a 'team' as my father often told me.
In time, I found my balance point between care giving and blogging and quilting, and so I began to quilt and to donate again. On January 1st of 2010 I formed the Liberating Quilting Challenge and I was able to find other quilters who would support and donate to this cause, as well. It lifted me up to an even greater cause and purpose and strangely, my personal burdens felt a bit lighter, as well.
As a member of the Alzheimer's Art Quilt Initiative I was asked several years ago, to write an entry that explained why I was contributing purple ribbons to that cause with the name or names of anyone in my family who had or has, Alzheimer's Disease. As I wrote names on my little purple ribbons, I had became totally shell shocked. I thought that I was supporting this valuable cause because of my mother's diagnosis and increasing challenges with A.D.
What I did not realize was just how many members of my immediate family had, or have, this horrid disease. My message to Ami Simms, moved her deeply, for she herself has lost a beloved mother to Alzheimer's ,,,and that is why her own heart is so open.... and why she created this fabulous charitable cause. Ami published my letter on the AAQI website and it is still there, to this day.
As you read
From The Heart of a Quilter you need to raise the number of my immediate family members who had Alzheimer's and related dementias (whether passed away, or now facing its challenges) to 15.
I have, or have had, fifteen family members who have been part of the 5.3 MILLION people facing this disease.13 in my family, in my DNA, 2 more aunts by marriage, have had this horrid disease....parents, aunts and uncles.
And now, out of the original 15...on both my maternal and paternal, sides of my family...only my mother, age 85, is still alive today. It has been heartbreaking to watch her decline, but I am so inspired by her amazing resilience, her will to live on.....no matter what the challenges. My mother is also blind, diabetic, cannot walk, and can barely use her hands......and she has previously battled and survived Stage 3b of Inflammatory Breast Cancer when her diagnosis and prognosis was incredibly grim back in 2002 and 2003.
While my mother is technically in an advanced stage of Alzheimer's due to the dramatic loss of her physical, as well as mental abilities....she is still able to communicate with us, and comes up with fabulous bursts of humor. She simply defies the statistics in many ways to this day. And I am so grateful for that gift..those tiny, tiny little gifts of recognition beyond what we expect, of her happy state of being, and for her sense of humor. For it has not always been so.
In the past, I have spent as many as 5 months in one single year, helping her (and my father) cope with the increasing challenges brought on by A.D. I have lived with them around the clock in their home for a combined total of 3 years of 8, leaving my family in Oregon and my husband and responsibilities there to seek to help what I deemed a larger purpose. I continue to travel to Alaska several times a year, and am now deeply grateful that my brothers and other family members, who live nearby and continue to assist our family in her care.
I am the oldest of 5 children and the only daughter. Statistics show that the ability of the elderly to continue to live at, and be cared for at home, is determined by the presence of a daughter. My father told me that it was because of my help that he knew he could continue to go on, and on until he died and then he knew we would continue to care for her in his absence. We did, and we do.
But now, since my father's death in August of 2010, it is because of my brothers that my mother is able to live in, and be cared for, at home..completely by family members. We have fewer options in our area, and most of those must be payed for at a huge cost and have waiting lists that are many years long. Once, I could no longer roll her over, lift her to any kind of sitting up, much less even attempt to carry her as my brothers have to in order to change and bathe her...I knew that I had done the best I could, for as long as I physically could.
I am so grateful that they, too, were able to learn from my father's example and rise up beyond their own fears and holdings to do so much, every single day, of my mother's life. It is a kind of challenging that you can only imagine if you have never walked that path with another. It is incredibly personal and incredibly, physically hard and very few people would ever, ever be willing to take on, much less physically do what we all have done and continue to do..day after day, over and over again.
When I cannot be in our island home in Douglas, Alaska, personally helping to care for her, along side of my brothers, I maintain my blog in the hopes that maybe current research is wrong, and it will keep my brain active and slow down, if not prevent my own future challenges with A.D.
I blog to make contact with others and to have a forum for my love of quilting, and donating quilts to others. And most of all, I continue to make small art quilts for the Alzheimer's Art Quilt Initiative. It is a viable, physical way that I believe that I can make a difference.
Trust me, if you were walking in our shoes..where we have been, and where we might be going....you would do this...anything.....to change the future for any of us who face Alzheimer's Disease, too!
And if you live to be over the age of 85, your chances of getting Alzheimer's or a related dementia is almost as high as mine...think about that!
I am making a difference the best that I can... and so can you!
The Alzheimer's Art Quilt Initiative:http://www.alzquilts.org/index.html
