I've watched it personally affect my friend's husband and my family. It took my grandmother from us, a once vital and intelligent woman. Her life was like a sad, but beautiful novel. She overcame a difficult childhood, married young and had two beautiful daughters. She was an elegant woman with a strong and regal carriage, standing almost six feet tall in her stocking feet. She was an exceptional cook who made her living as a housekeeper. She loved to travel and did that often, going to far off and intriguing places like Egypt and Morocco, the first in our family to do so. She was a voracious reader, a collector of all things Asian and could crochet and knit the most beautiful things. Among friends, she had an almost girlish, infectious laugh that could put a smile on anyone's face. She loved her weekend drink, though never to excess. She was a constant presence in my life until I married and left home.
It was she who provided one of my sweetest memories. My first winter, and my first Christmas in New York, for I had only arrived in the country that summer -- she woke me in the middle of the night so that I could see my very first snowfall and it was with her at my side that I got to experience that first sensation of snow on my face and on my tongue.
Had I known more about the disease, I might have seen the early signs, in particular the one that I replay in my mind over and over again. On a frosty winter day when she stood in the bitter cold with my five month old son till his cheeks had frost bite, because she had forgotten where she was suppose to go. And though I thought it strange, I never once thought Alzheimer's. I chalked it off to absent mindedness. The signs were all there over a decade before the disease would ravage her. It began with a few incidents. She started falling in the street. On occasions she would get confused about which train to take home. Then one day she failed to come home when expected and arrived at my Mom's home almost three hours late. Her stockings were shredded at the knees, her hand was scrapped and she seemed in total disarray. She had fallen yet again, and had to ask directions to get home for she could not remember how to.
They call Alzheimer's, The Long Goodbye for a good reason, it is a cruel monster that disappears you in plain site, little by little. It humbles you, humiliates you and slowly erases your thoughts, your data bank of stored images, of a life that was made whole by a combination of experiences and treasured memories. The last time I saw my grandmother, she was sitting in a wheelchair, a vacuous smile across her face. I leaned in an gave her kiss and then I could not hold back the swell of emotions that overtook me. The realization was too much to bare - my grandmother had long since died, what remained was a shell that once housed her laugh, her wit, her character, her pain, her joy, her life.
It is surprising - I never thought that she would become an Alzheimer 's victim, nor did I ever in a million years think it would be the fate that would befall my children's father. A man who treated his body like a temple. He had introduced me to the world of natural, organic and vegan foods, way before it became popular and trendy. Before there was Whole Foods, he would take me to little mom and pop natural health food stores that carried pelt breads, veggie burgers, organic eggs and wheat grass juice. It was his influence that helped me kick cigarette smoking and changed my entire perception on good nutrition, health and wellness. He had a profound impact on the way I care for my body today and the way I chose to raise my children and yet, here it is -- this robber is back to steal yet again. And once again I recall what might have been the early signs that something was wrong.
When I met my ex, he had a routine. An early riser, he would get up in the morning and go for a run. When we bought our dog Esther, he would take her on his morning runs. Around three years ago, I casually asked if he still went running in the morning, as he use to when we were together and he had no idea what I was talking about. He denied ever doing any such thing. He was so convincing that I began to question my own recollection.
The incident with my Grandmother and the one with my ex were alarms, which were ignored. That is the cruelty of this disease. It makes its appearance slowly -- an unwelcome guest, it takes up residence and begins to syphon your personality, the unique aspects of what makes you, "you". Less than a year ago, he was diagnosed with the early unset of Alzheimer's, and like my grandmother before him, the signs had been there all along, but they were overlooked. Little things like calling my phone but not knowing why he was calling me, asking for my phone number each time we spoke, phoning his sons but not knowing which one he was calling and then forgetting why he was calling.
I've spent much time silently weeping for him and for my boys, thinking about the horrible fate that looms a head. I've thought about the impact on my children, and how this has already cast a deep sadness over them.
The last time he called - I answered. I greeted him the way I always do, not thinking for a minute that he might not recognize my voice or not know who I was. That's the wretched thing about this disease - it beats you at every turn. He had not a clue who I was and when I explained that I was his ex-wife, the mother of his children, there was an awkward pause.
"Don't you remember me?", I asked.
"No," he responded.
"I am your ex-wife, the mother of your boys."
"You are?", he asked. Then another pause as if he was struggling to reel in the memory, and then, "Wow. Wow," he said.
We may have had our disagreements, but we had a life together for almost 14 years. Our relationship produced three beautiful children. We traveled together, we had dreams together. We had memories together. I remember him at my side when our children were born. I remember that he cut the umbilical chords and held them each before I did. His love for them is still very much there, visible. But so is the struggle, his fight to hold on for a brief moment more.
He has moved back to the place of his birth, Louisiana. Close to family I am hoping that he will be able to cling to himself a little longer. His sense of humor is what finally won me over, and that was already disappearing the last time I spoke with him. Even now as I write, I know the worst is yet to come - the long good bye has started. One of my sons cannot bare the thought of what's happening so he has begun sheltering himself against the pain of the inevitable. The other two continue to call, they have chosen to be a part of his life for as long as he is consciously there. I can see their pain, I can feel it. I want to assure them of something - I just don't know of what. I've already lost him, he probably doesn't know I exist or that I ever existed in his life. And my heart breaks thinking that all those beautiful memories of him and the boys, their first steps, their first christmas, their funny antics, their journeys with us to far and new places, all of the hopes and dreams we have for our children, those will fade as his mind, like a dying star, breaks into tiny particles and disappears into the infinite darkness and all that will remain will be the physical self.
If you are interested in helping find a cure for Alzheimer's, have questions or need information here are some organizations that might be helpful:
- Cure Alzheimer's Fund
- Alzheimer's Foundation of America
- Alzheimer's Association http://www.alz.org/
1/1/2015
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