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Alzheimer’s Fantasy in the Key of G
By Kirsten Levy
Alzheimer’s Caregiver or Storyteller?
My mother’s Alzheimer’s decline lasted the full eight years that they say is average. The whole saga however was nearly 20 years of time, a huge chunk of my life – the caregiving while she was alive and the reflection and writing when she passed.
I reached out for resources. I found that most dementia writing was geared toward the caregiver; of course it’s natural for writers to want to be helpful by sharing experiences and offering a hand to hold during the dark journey.
But my approach, when I sat down to write, had to be from another angle. It had to be different. I wanted to share the story more than the caregiving, which often was not pretty. I was my mother’s caregiver but didn’t really know her story. I wanted to be in her head because by then she was non-verbal.
I didn’t know why the story appealed to me then, suddenly so important to tell. I knew her character and her witty expressions had to come from somewhere; she and her mother had the funniest, sharpest and most colorful of sayings, cozy and familial, it spoke of generations of Irish culture.
But I didn’t know the people or the facts.
I guess, and it’s only a guess, since there wasn’t much visiting in our extended family among the cousins, perhaps that was a reason. In any case my caregiving seemed to be totally in a void and I wanted desperately to rectify that.
Writing the Story
So there I was in her room in Assisted Living. She had moments of clarity among lots of other moments. I figured that while sitting there I could imagine where she was going and who she was seeing and she could take me there.
These ruminations and imaginations and rudiments of truth became the basis for my memoir despite my starting out on the journey greatly at a disadvantage. Kind of a paradox to use her dementia to tell a story, right?
Available from Amazon
To examine memory in a place where there is none. And do it for her, this daughter of Ireland, grandchild of immigrants, born and grown up in a place she loved and left, Boston, but always wanted to return to.
Yes, my choice had to be something different.
Who’s My Guide?
That’s the gist of it. My book is not the traditional Alzheimer’s guide. My mother was my guide, quite the reverse. I used her Alzheimer’s as the way inside.
Who would care about this?
My sense is that it’s not my story nor yours, dear Readers, it’s the telling of it, the taking the journey into and beyond the illness and into and beyond the generations. That’s why they spare no effort, at rehab, to decorate the patients’ rooms and their doorways and exhort you to get involved in the whole of it.
There are many stories in one, a merging of memoir and lived experience, a fantasy, a speaking up for the patient by giving the barest glimpse of the inner workings of her mind once she is no longer her own agent.
Available from Amazon
Alzheimer’s Fantasy in the Key of G: Who’s Story is It?
I did the caregiving role for many years, it’s true. It’s hard. A decade in fact, from the moment my mom confided to me, fearing her decline, that she felt “something different,” to the time of her passing.
She insisted on neuropsychological testing, twice in two years. It was very brave to face up to this illness that she feared the most. Initially the tests didn’t confirm her dread only prolonged it to the moment when at age 75 she did get the news, the worst news, the news she was expecting, the diagnosis of Alzheimer’s.
Those caregiving years were fraught – it’s the same for everyone, the discord and mismanagement between us the siblings and huge efforts to accomplish nothing. I’m sure people will recognize their own trajectory.
The caregiving piece book-ends the tale – we open in the present at the rehabilitation hospital and we end in the future at a community forum on Alzheimer’s therapy. But in between, my mother and I have moments when we are together in thought and action, synchronous.
I loved those moments for it was as if I hitched myself to her shooting star as I tried to understand her family story, to carry it forward, and backward, realizing that what I thought I was doing was her story only to find out that it was my own.
And it mattered. And it will matter to you.
Kirsten Levy
Kirsten Levy
Kirsten Levy enjoyed a long career in research and administration at Boston University where she managed research, brought funds to the university, and published academic publications. She has an MBA in health care management.
These twin pillars of her career, set in the medical environment in which she has worked, stood her in good stead for the onset of Alzheimer’s Disease within the family circle.
Kirsten enjoys the outdoors and dances Latin and ballroom standard.
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