On Vanishing. Lynn Casteel Harper
interdenominational congregation in Upper Manhattan. Working with elders at the church, as well as leading workshops, continues to connect me to issues surrounding brain aging. But it was my time at the Gardens, which overlapped with the last years of my grandfather’s life with dementia, that served as the crucible in which this book was formed.
The closer I came to people with dementia, the more my assumptions vanished, the more they became individuals rather than a blur of disability. While I encountered diminishment and loss on the Gardens’ dementia unit, there was more than just deterioration. At times I felt I was witnessing, instead, a kind of ascendency—of compassion, honesty, humility. I befriended Evelyn, a retired math teacher, who spoke to me as a colleague, often asking, “How are your students?” I met Mary, who, despite her acute anxiety, readily assisted her less-mobile neighbors, pushing them in their wheelchairs to activities and meals—and who once helped me plan a party. I met Bernice, who taught me that not all of the disappearances associated with dementia prove unwelcome or tragic. What vanished in Bernice’s later years were some of the distressing manifestations of her long-standing mental illness. Crippling anxiety and paranoid delusions gave way to more laughter and delight. One day she pointed out my gray hair, grinned, and declared, “See, you’re aging, too! Just like us!”
I came to know these residents and so many more—not primarily as defective victims of Alzheimer’s, presumed to be “lost” to their disease—but as complex, dynamic individuals. And I began to wonder: why do we—those whom the dementia activist Morris Friedell termed the “temporarily able-brained”—need them to vanish? Why are we so eager to view them as disappearing or disappeared? And what possibilities are we precluding, what hard work of the soul are we avoiding, by imposing this distance?
I want to probe the distance. I want to understand why certain metaphors dominate, eclipsing other ways of imagining dementia, and how these depictions of dementia generate and reinforce stigma. I want to interrogate the cultural, social, political, and spiritual values that disproportionately define us by certain cognitive capacities. I am searching for new, more robust renderings of dementia that expand our vision beyond progressive vacancy and dread.
It was Betty who originally stretched my imagination. In my first months at the Gardens, Betty helped initiate me to the fourth floor’s rich potential. She always carried a floppy, well-worn Bible on her lap, as she wheeled herself up and down the unit’s hallways. When I suggested to Betty that she and I start a Bible study on the floor, she happily agreed. On Thursday afternoons, with a few of her neighbors, we began to gather in a small dining room across from the common room. I had no idea what to do, so I began at the beginning, reading stories from Genesis. Betty, who kept her eyes closed most of the time, came forth with great insights and funny quips, but only after she had sat in silence for many minutes. On the afternoon I read the story of Joseph’s brothers throwing him in a pit and selling him into slavery, she exclaimed, “Oh, the jealousy!” as the other participants were dispersing after our closing prayer. I learned that her long silences did not mean she was disengaged. She taught me to slow down and wait with my mouth shut.
Like any good evangelical, Betty lamented that the group was not bigger; she wanted converts, new recruits. She had imagined throngs, not just three or four acquaintances in a small circle. Her passion for engaging others struck me as utterly loving, a thoroughly intact desire to reach beyond herself. Betty’s tireless energy laid the groundwork for the group to flourish after her death. Although perhaps not quite in the way she would have hoped, the group did grow, evolving into an interfaith spirituality group of nine or ten devoted attendees. Our meetings became the highlight of my week. Whether facilitating this group, visiting with residents and their families, or chatting with stretched-thin staff, I found I spent more time on this floor than any other.
The Buddhist nun Pema Chödrön says we work on ourselves in order to help others, and we help others in order to work on ourselves. We go into the areas of society that we have rejected so we can reconnect with the parts of ourselves we have rejected. I spent time on the dementia unit not because I was some kind of martyr or saint, or because the work came preternaturally easily to me (it did not), but because, perhaps, I sensed I could mature as a minister—as a person—only if I learned how to embrace those people whom we can all too easily believe have nothing to offer. Perhaps, in the process of knowing them, I might come to embrace the seemingly unworthy—confused, strange, fragmented—parts of myself. If my faith was supposed to culminate in cheerful bedside conversations, erudite sermons, eloquent prayers, unending activities and activism, and word-heavy worship services, then I (and the larger tradition of which I am a part, as a Baptist minister in the mainline Protestant vein) would have little or nothing to learn from persons with dementia, and even less to offer them. But I began to see my faith—and my role—in different terms. I think dementia—the process of turning it over in my mind, investigating it, and above all, coming close to persons living with it—has slowly stretched my imagination about spirituality, asking me to value silence and absence, to embrace strangeness and spontaneity, to revere the nonverbal and nonlinear.
Around the time I began working at the Gardens, my own family was encountering up-close the depths of dementia. On the morning of my grandparents’ weekly shopping trip, the teenage boy whom my mother had hired to shuttle her parents around town found my grandfather on the lawn mower and my grandmother unresponsive in bed. Apparently, unable to rouse his wife of sixty-five years, my grandfather had gone outside to mow the lawn.
My grandmother’s sudden death exposed the hundreds of ways she had compensated and covered for my grandfather’s dementia. What we had dismissed as hearing loss, a bout of depression, or a touch of senility, revealed itself as something progressive and pervasive. Overnight, my mother became his caregiver. My mother and her father were living in an intimate way what I was encountering in a professional setting half a country away. Unlike me, they did not leave the dementia floor at five every evening; they were grounded in the round-the-clock realities.
During the year I began writing this book, and just a few months after I had left the Gardens, my grandfather died. This book, in part, seeks to trace the long shadow of his absence and to honor and reframe his presence. But, ultimately, it is not about him. While I hope this book sheds light on how to better care for people with dementia, my primary aim does not involve teaching techniques or methods. Rather, this book is about those of us who do not have dementia yet; those of us who never will; and those of us who are already suffering dementia’s effects or have friends or family who are. It is about examining our fears, questioning our culture, and—at least in my case—reorienting one’s spirituality in light of the challenges and possibilities such diseases bring forth. It is a book about vanishing, and what “vanishing” really means.
The skull in Vanitas Still Life, while undoubtedly grim, bears a wry, gapped grin—a grin missing four front teeth. Stripped of its flesh, our bone structure apparently discloses a faint, effortless smile. The skull’s stark, denuded presence signals gravity, but its blithe affect signals buoyancy. Perhaps this face of death reflects both the weeping Heraclitus and the laughing Democritus, pointing viewers back to Ecclesiastes: there is “a time to weep and a time to laugh.” Wisdom here comes lodged in apposition—pairs of apparent opposites, united by the word “and”: “a time to be born, and a time to die [. . .] a time to break down, and a time to build up [. . .] a time to cast away stones, and a time to gather stones together [. . .]” These lines in Ecclesiastes encourage readers to imagine a world in which the poles of existence create vibrant tension, in which life and death, gathering and releasing, embracing and refraining, weeping and laughing, do not negate each other, but instead balance and enrich. There is aggregation and integration—even with loss, even in death.
Dementia, too, invites this kind of conjunction. There is dilution and distillation, constriction and expansion, disorder and constancy. Certain aspects of persons and their relationships fade—and other dimensions crystallize, possessing a new kind of clarity. Dementia places new constraints on communication—and relationships expand to include new ways of being and loving. Cognitive changes upset the usual patterns of one’s life—and some rhythms remain unchanged.
I heard a woman describe her spouse with dementia as “my gone but not gone husband,” and her phrase seemed to