Deception, Dementia and Moving a Parent: A Daughter Ponders the Places and Meaning of Care
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"The content and scope of care is always an open question."
Arthur Kleinman, The Soul of Care
My journey to care for my mother began with a phone call at 9:00 am, a Sunday in December. It was my stepsister. Her voice and the horns of Tel Aviv evening traffic poured into my California living room, fracturing my calm surroundings. "Dad is dying, probably [End Page E19] tonight," she said. "You have to come and take care of your mother." Thirty-seven years before, my mother, Shirley, at age 50, had divorced my father and left San Francisco to move to Jerusalem and marry Bill. Jerusalem had become her beloved home. Now 87, she had early to moderate dementia. Bill had been holding everything together—a common scenario.
The plane carried one of my sisters and me to our losses. My mother's losses were her husband, memory, and the life she had built—mine, a decidedly care-free relationship with her. What I didn't know was that I would deceive my mother twice, once in life, once in death. Those deceptions, born from love and care, would haunt me for a long time.
Family discussions of dementia are loaded with poignant and often unrelieved anxiety about what to do when a parent or other loved one can no longer manage daily tasks. Families worry about how or whether to honor what the person wanted before the disease took hold. Would they want to be hospitalized when ill? Remain at home, no matter what? Avert death's arrival with medical technology? As my journey with my mother unfolded, this question of identity coherence—and its relationship to care—is what preoccupied me. Would I be honoring her late-life choices?
My mother and Bill had been living together in Jerusalem since 1973. As her memory loss progressed (with an initial diagnosis of vascular dementia) and his heart failure became more severe, my two sisters and I visited more often, sometimes three times a year, feeling the tug of responsibility getting stronger with each visit. We saw things our mother couldn't see or didn't reflexively understand. She couldn't make a shopping list. Then, she couldn't put together a salad. She got lost taking a walk in her beloved neighborhood. But she hadn't lost her rootedness in Jerusalem, her deep connections to friends, family, and life there, or her elemental knowledge of being at home.
The Funeral
"This is a dress rehearsal," I said to my cousin as we walked away from the grave after Bill's funeral. The next time we come back to this place with its dual plot, I remarked, it will be for my mother.
I was sure of that.
My mother knew it was unlikely we would visit often, and even less likely that her American grandchildren would visit a grave near Jerusalem at all. "Maybe some of you would visit my grave once in a while," is all she said. Her choice of burial location affirmed her later-life identity as an American-Israeli Jew, whose deliberately chosen home was Jerusalem, and who wanted to be laid to rest there, next to her husband of thirty-seven years. There was no question that she sought to complete the narrative of her life in a particular way. She chose an ending that would incorporate her remains into her beloved landscape and thus perpetuate her true self into our remembrance. She had made it hard for us to ignore that, and not yet realizing that Bill's funeral had already set the stage for both my betrayals, I wanted to honor her wish. My betrayal would be about her place of belonging and self-making, and that included the place of her burial.
"Absorbed with Place"
My mother, the poet Shirley Kaufman, had dementia for many years before she died in 2016 at the age of 93. She was exquisitely attuned to language and the power of words to evoke interior life and imaginative horizons. In a magazine interview 30 years after her...
