My father was cogent to the moment of his death, spared as were we, the ravages of Alzheimer’s. While his body failed him over the months leading up to his passing, he had no doubt along the way of who he was, who he had been and where he was going.
My mother now nearing 98, is not quite as fortunate with regard to escaping the cruelties of a disease that slowly but ineradicably strips away memory after precious memory and layer upon layer of an identity that has been built over nearly a century of living.
In the course of a ‘normal’ conversation these days with my mother, I can at one moment be at my own Bar Mitzvah over a half-century ago, instantly transported to an embarrassing bicycle accident she had nine decades before, or waiting with her for a bus on some unnamed street that may never have even existed. She is an unfettered and unintentional time traveler not only in her life but in mine, that of my brothers, and those of her own siblings, parents, friends and miscellaneous family members that are little more than fading images on undated crumbling Kodak prints.
As I hold her hand, I let go of the mental moorings that previously anchored the neatly ordered events in my life (and hers), and go with her trusting, or perhaps hoping that the course ahead will lead us somewhere familiar, or to a location at least recognizable. But the reality is, or at least her reality is, that for want of a better metaphor, there's no one steering the boat. Bits and pieces of events, feelings and memories cascade before us, sometimes speeding by while other times slowing down enough for us to linger, reminisce and enjoy before the next step into the sands of time that inevitably dissolve beneath our feet.
When I am not deeply saddened by the loss of my mother to this sadistic tour guide of a disease, I must admit that I am fascinated by the fluidity of her thought, the ranger of her emotional experience and the sheer volume of fragments of self that historically and neatly cohered into a richly woven tapestry of self.
And the damn thing of it all is that in spite of the fact that I am a psychologist, I have no template for understanding the experience from behind her eyes. Sure, we could hook her up to an fMRI and track the blood flow to different areas of her brain, or to a PET scan to track metabolic activity in her brain or perform a battery of neuropsychological tests in order to assess (or perhaps infer) functionality and/or its absence. But to what end?!
I do, and I can draw on the vast repository of popular culture for examples of Alzheimer’s disease such as the crusty, irascible and frightened Henry Fonda in On Golden Pond (link is external), or the tormented experience of James Garner as he attempts to reach his wife Gena Rowlands in The Notebook (link is external).
Or I can, as I often do, reach out to the scientific literature to guide me through the darkness of this shared journey with my mother. Rune Svanstrom of the University of Skovde tells us in her article “Gradually Losing One’s Foothold: A Fragmented Existence when Living Alone with Dementia” that Alzheimer’s is often accompanied by loneliness, fragmentation of identity and a gradual loss of ways of relating to the world and others. Jane McKeown of the University of Sheffield in her article “You have to be Mindful of Whose Story It Is”, reminds us that the process of building (or re-building) a life’s narrative with an Alzheimer’s sufferer is a joint effort in which the story teller and the listener share joint authorship in a process she calls “narrative quilting”.
Surely, I am comforted by both popular culture and popular social science narratives about the experience of living with and caring for someone with Alzheimer’s. But in the end, they help little in truly understanding who my mother is and who (or who she is not) becoming.
But if I am lucky, and I hold tight for the full ride, I may just get to witness not only the miracle of time travel, but my own birth through my mother’s eyes.
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