With its attention to the quality of presence and the practice of mindfulness, this 42,000-word manuscript is unlike other books about dementia currently available. It is not the retelling of the sad story of decline, though it does not shy away from that inevitable aspect. The narrative through line runs through me, the middle aged adult daughter, as I experience a kind of second hand dementia. The story of my unexpected personal healing in the face of loss and grief, coupled with the account of practicing mindfulness—tracking my own psychological, emotional, physical and spiritual experiences as they unfold in real time—makes this sad story of death into a rich story of insight, growth and redemption.
The book is not a factual account of the illness. It is not a how-to guide for selecting elder care facilities. It is not a plea for hospice or a critique of industrial aging. It is a heartfelt and at times humorous account of the power of love and connection. Written as a set of scenes between my mother and myself, the narrative moves forward in time over a two-year period when Ernestine’s illness was most acute. It circles back to the past to illuminate Ernestine’s character and the strange bits of memory that washed up in her mind as well as my own as I sifted through the past to understand my present. These loops back keep narrative tension in play: for example, the reader first meets Ernestine at a consequential choice point in our journey. I find her at the geriatric psychiatric unit of the local hospital, disoriented and belligerent. The pages that follow map out how we each reached that moment and where we each went thereafter.
The chronological story begins eight months prior to that episode at the psychiatric unit as my sisters and I move Ernestine from Cincinnati to Providence. It had become clear that in the wake of my father’s sudden death two years prior, Ernestine could no longer cope without a trusted family member nearby. At the (tastefully) locked memory unit, Ernestine enjoys days filled with singing, outings and walks through the lovely outdoor patios. While she grows increasingly confused and at times outright fearful, she is also good- natured and always a good sport. She still recognizes herself for stretches of time. This opening establishes my orientation to institutional elder care and more importantly my assessment—emotionally and practically-- of the effects of the illness on my mother.
The next step, to move her to a nursing home after a three-week stay at the local psych hospital, pushes the narrative forward in time as we both struggle to adjust to the new surroundings. At this point, settled in the home from which she will never leave, the story stops being about place and becomes about time. A series of ten scenes move the reader through Ernestine’s ever-more fragile grasp on what is going on around her and her growing orientation inward. These scenes or vignettes evoke how she feels moment to moment and capture her astounding lucidity in the face of her cognitive decline. Her fellow compatriots on the fourth floor of the home, the nursing staff, and other middle-aged children visiting their parents enter as characters, illustrating the community of care and benign neglect in which Ernestine and I find ourselves.
These vignettes mark the deepening of my mindfulness process, my own remembering of who she had—and had not been- to me and who I had--and had not been- to her. These insights culminate in a moment of redemption for us both: my conscious decision to let go of my memories, to stop holding Ernestine to a history she no longer recalled, no matter how consequential and difficult that history had been for me. These scenes also introduce the thorny issue of end of life care for those with advanced dementia, and in this way, mark the active phase of my grieving process, months before Ernestine died. By the end, as my mother reaches through the deep fog of no-time to ask if she should wear a hat to her own funeral, a comment that leaves me crying and laughing in equal measure, we are in the spell of another realm: the bardos, the space between life and death, a space of saying goodbye and unexpectedly, of healing.
The final chapter brings us through the day of her passing and my awareness of having reached the end of the tremendous and tremendously draining time of intimacy with Ernestine. I take note as she clears my nervous system three days later, as I walk on a wintery beach, tears streaming from my face, alone again. My mother did not appear to me to say goodbye, I notice ruefully. I did not find her on the beach that cold morning, dispensing wisdom from the beyond. But as I breathed into the vastness of the sky, suddenly that this absence too was perfect. My mother never did reveal much of herself to me when she was fully herself. It was only as she slipped away that I came to see us both more clearly.