Thursday, March 5, 2015

The Alzheimer's Gift


Until Mom’s diagnosis, I understood Alzheimer’s as a memory problem associated with aging. Over-the-hill Alzheimer’s jokes seemed hilarious. After the diagnosis, I devoured book after book about the disease. It was not just about memory loss. It was about a slow, crippling, terminal descent caused by loss of brain function that begins with memory. The jokes lost their humor. Today, I become offended by any attempt at humor at the expense of Alzheimer’s Disease.
Travel Girl | Navigating Hectivity by Micki Bare
Train selfie during our California trip.
Ella loves to travel. She's never met a stranger.


As a caretaker, I not only read the books that shed light on what were facing, but also joined a support group. I signed up for e-newsletters and followed Alzheimer’s organizations on social media. Much of it was and still is tough to take. I don’t open those emails or click on those links without bracing myself for more grim facts. 

Also since the diagnosis, I began noticing the regression as a systematic process. It mimicked much of brain development research with which I became acquainted during my 20-year early childhood career; only in reverse. This revelation helped to greatly shape my ability to handle the changes in my mother’s abilities and behaviors. 

But the greatest revelation hit me more recently. It evolved after I finished reading Still Alice by Lisa Genova. It was a tough read. I cried. A lot. There were too many parallels to my mother’s experience. But I read it. Soon after, I began to realize my perspective on the situation was wrong. 
Doll Artist | Navigating Hectivity by Micki Bare
Ella is a soft doll artist. She loves to create
with fabric, thread, and her imagination.

I was not, in fact, watching my mother lose herself and slip away. She was not becoming anything different than who she has always been. She was Ella when she was born, long before she could talk or walk. She was Ella when she was discovering who her family members were and learning about the world around her. She was Ella when she struggled through puberty, became a woman, landed her first job, married my father, and raised her children. She is Ella now. 

And she will be Ella when she can no longer understand how to use a remote control for the television. She will be Ella when she no longer recognizes me as her daughter. She will be Ella when I have to bathe and dress her. She will be Ella when she can no longer talk or walk. She has always been and will always be Ella, a unique and beautiful individual. 

And while the progression of the disease will cause her to lose abilities in reverse of what she gained as an infant and young child, it provides me the precious and unique gift of getting to know the original Ella. As her daughter, I was not there and could not know what she was like when the world was new to her. But as we walk this path together, I am provided miraculous glimpses into the personality of a fun-loving, sometimes mischievous, kind-hearted, generous, wide-eyed young Ella who did not necessarily understand every aspect of the world around her. There is an innocence that is recaptured as the disease progresses. In a world that is so stressful and confusing for the able-minded, a dose of innocence and bewilderment can be viewed as a gift. 

Creative on Canvas | Navigating Hectivity by Micki Bare
Ella loves the challenge of a blank canvas.
I learned long ago that people hear what they want to hear and see what they want to see, despite physical evidence and regardless of circumstances. Now is the time to use that quirk of human nature to my advantage. I don't want to hear about the horrors of the disease. I don't want to focus on the negative aspects of such a challenging journey. 

Raising my children was challenging at times. It was physically and mentally demanding, required great patience, and occupied much of my time and attention. But encouraging them as they developed and grew was an honor, a pleasure, and greatly rewarding. I cherish the memories and will carry the experiences with me for the rest of my life.

Taking care of my mother is challenging at times. It is physically and mentally demanding, requires great patience, and occupies much of my time and attention. But helping to navigate her through each day, helping her understand, helping her live life to the fullest is an honor, a pleasure, and greatly rewarding. I know I will cherish the memories and carry these experiences with me for the rest of my life.
Picture Perfect Always Ella | Navigating Hectivity by Micki Bare
It was, is, and always will be beautiful,
unique, fun-loving Ella in the mirror.
Nothing can take that away.

Fellow caretakers; spouses, siblings, children, and friends of those suffering from Alzheimer’s; when the negativity surrounding the clinical realities of the disease tear at your soul, when the challenges of day-to-day caretaker responsibilities as you witness the digression firsthand weighs heavier than twenty grand pianos on your head, remember always that your wife, husband, mother, father, sister, brother, friend—your loved one—will always be who they are, despite the effects of the disease. As long as their hearts beat, they are them. And spending time with them is a gift. A beautiful gift to be cherished always.

Micki Bare, mother of three, wife, daughter & writer is the author of Thurston T. Turtle children's books. 
Email: mickibare (at) gmail.com
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Copyright 2015 Michele Bare