Around 2003 I knew something was dreadfully wrong with Mom. I didn’t speak of it. I just knew it. Although the changes in her were subtle, to me they were as glaringly apparent as a matador’s cape, because we knew each other that well. It took months for me to be able to take her to a neurologist. And months more before I could take her for a second opinion. They called it dementia and suspected it was Alzheimer’s.
These are among the reasons I did not have a continuous flow of uninterrupted time to write this most recent book: Dad’s death. Mom’s diagnosis. And then the death of my very best friend since diapers. We were cousins and only seven months apart in age. My sister also became dreadfully ill.
I knew that G-D would “never leave me or forsake me.” I knew He would be next to me through all of it.
But I couldn’t cry on His literal shoulder. He couldn’t hold me. He couldn’t help with the myriad details. He couldn’t drive me when I was too tired or undone to think clearly or see through my storm of tears.
I was entering a living nightmare and was too savvy and experienced to not know what I was facing. I tumbled head-first into a life of searing darkness. It was so much more than “depression.” It was unmitigated terror.
Mom made her transition out of this realm in late 2009 and …….. well, I’m not sure what to say about that.
I chronicled every day of Dad’s march toward the end of his Earth life, from the day of his diagnosis to his passing six months and ten days later. But I have never written one word about Mom’s and my final journey and I’m not sure I ever will after today.
I don’t know that I can. I don’t know that I want to dig that deep, bring every agonizing moment of those six and a half years into consciousness and then re-live the emotion, the sizzling-fiery pain, the centimeter-by-centimeter diminishment of the woman whom I loved more than anyone I’ve ever loved. I don’t want to commit it all to print. I don’t want to find the words. I don’t want to look at the words. I don’t want anyone else to read the words that could never in ten zillion “forever’s” capture the agony of that journey and the grief that will not go away.
It is now eleven years since we laughed together or held hands or laid in her bed and watched a movie. My life is so different with her gone that some days it barely feels like a life. It feels more like an existence. There really is an ongoing sensation that parts of me are missing. That I am somehow less; but I know that’s not so. She left so much of herself inside of me that in some sense, she’s not gone. She just lives somewhere else, and I know without doubt or suspicion that we will be re-united someday. I can hardly wait.
And that’s the problem; I can hardly wait. I work on this every day because I know this is not the mind-set G-D wants me to have. I know He is not delighted that I wish to be gone from this Earth.
He knows that I know this is the natural order of things and that I had Mom for sixty-two years, a blessing I thank Him for with tears, praise, and thanksgiving.
I am not unaware that some children lose their mothers during childbirth or when they are five years old. I do so wish I could say these facts help me to heal. I can feel sorrow for these kids. I can offer myself to them if they are children I know. I can pray for their little broken hearts. But their broken hearts don’t heal my broken heart.
So here I am, writing about “IT.” But I will not write about the year after relentless year of her descent into insanity. Nor of the bizarre behaviors that humiliated her because during the first few stages, she knew something was VERY wrong. I will not write of the demure and sassy, delicate and completely lovely lady who slowly spiraled into someone freakishly strange, a potential danger to herself, a woman whose hallucinations took her on a ride into hysteria and terror that no coaxing, drugs or hugs could ease.
In the first stage of the disease, I was told by several people I must tell her the diagnosis, because it was not fair to her not to tell her. It took weeks for me to find the courage. And then, I told her, with her sitting on the sofa in her living room and me kneeling in front of her, clasping her hands in mine. She looked astonished. Dazed. It took a minute or so for her to grasp what the word Alzheimer’s even meant. Then she rose, walked into her private bath and returned a few minutes later. Her eyes were red-rimmed from crying.
She sat back down, took my hands into hers and said, “We will get through this together, Toni, somehow.”
That’s when I had to leave the room. I had worked myself into a frenzy from the dread of having to tell her. It had taken me a whole year to even be able to say the word “Alzheimer’s” out loud. Telling her was the hardest thing I’ve ever been required to do.
I drove back to my home in VA knowing it was now inescapably time to leave VA and move back home. Will it come as a huge surprise that all of this threw me over the bridge of sanity into my own circling-the-drain panic?
Before packing and moving, I had a legitimate, die-hard, no kidding break-down. I was paralyzed. I was hysterical for hours a day. I lost thirty pounds. The thought of leaving my small coterie of friends I’d had for twenty years and moving back home to Alzheimer’s and my sister’s severe illness, rendered me breathless.
Never in all my time, not even when I myself was mentally ill, had I been so terrified or alone, holding firm to the belief that I would not be able to handle all of this. I would have no help from Dad; he was gone. No husband. No children. A sibling who was far too sick to help herself, much less help Mom or me.
* * * * * * *
The book? What book? I found just breathing and eating more than half-a-piece-of-toast a day to be my greatest challenges.
The saving grace and gift from G-D in all the pain, was that she NEVER once forgot who I was, nor did she ever forget my name. She often forgot her own, but never mine. That was G-D at His sweetie-pie best, showering me with His grace and mercy so that I could persevere and never falter in my unbridled devotion.
My heart joins with every one of us who must suffer the loss of those we love. It is as unfathomable as it is inevitable. It is also endurable because of G-D’s unfailing love for us and the people around us who love us through our grief.
And that’s all I’m going to write about my Mom’s and my journey through the complexity of dementia. You now know what is salient, and I have exhausted my stream of words and thought.