On Vanishing. Lynn Casteel Harper
and contamination, carrying an even greater charge of stigmatization. AIDS, Sontag wrote, was among “grave illnesses regarded as more than just illnesses.” It was perceived “not just as lethal but as dehumanizing”; it supposedly degraded and dissolved the person. Sontag hoped that even this disease, so “fraught with meaning,” could become, one day, “just an illness.”
In our contemporary moment, I think Alzheimer’s has become another disease “fraught with meaning.” It, too, is regularly spoken of as a force that degrades and dissolves a person. Rather than the fear of invasion or contagion, it evokes the fear of advancing oblivion. The disease is “the long goodbye,” people say, or “the death that leaves the body behind.” The afflicted become the “living dead,” who have vanished in plain sight. We are taught to think that dementia displaces persons, turning their faces to “blank stares” and their bodies to “shells,” making strangers of intimates. A thief, kidnapper, slow-motion murderer, Alzheimer’s purportedly robs, steals, and erases one’s memory, mind, personality—even one’s very self. That persons with dementia are so readily envisioned as vanished or vanishing, succumbing to an especially terrifying, slow-moving, unstoppable vortex of suffering, surely speaks to anxieties beyond the ordinary fears of death and disease. The intense negativity of dementia metaphors—combined with their ubiquity—moves them beyond vivid description of brain disease; they express an outsized dread. It seems dementia has become more than just an illness.
I worry that the language we think describes a reality also creates one, that Alzheimer’s notorious reputation adds to the suffering of those who have it, their caregivers, and everyone else in the at-risk population—that is, all of us who plan to grow old. Images of vacancy seem to push persons who do not have dementia away from those who do, keeping “us” at arm’s length from “them.” If “the light’s on but nobody’s home,” why would I (or anyone else) wish to visit?
The story of how I became involved with dementia is not entirely straightforward—perhaps mirroring the oblique course of dementia itself. I can trace some of my interest back to the summer after I began divinity school, the summer I turned twenty-four, when I completed my first unit of chaplaincy training in a hospital. I was reluctant to enroll in the ten-week program, fearing I did not have the constitution for this kind of work. The last time I had been inside a hospital was five years prior, when I had visited a friend who had been in a motorcycle accident. When she described the pins screwed into her hips, I fainted and fell backward, hitting my head on the cold ceramic floor. I spent the afternoon in the emergency room for observation.
But with no other prospects for the summer, I applied to the program, and was assigned to a neurological unit where patients were recovering from brain surgery. They had had tumors, aneurysms, strokes. I spent each day with patients who struggled to find words, to relearn basic tasks, and to just stay awake. I learned about brain death when I was called to the room of a teenage kid who had crashed his four-wheeler into a tree. His mother’s knees buckled when she received the news that her son was brain-dead.
The fragility of the brain pressed in upon me, and I began to confront how closely I had tied my sense of identity and worth to my own intellectual ability, a metric that now felt remarkably tenuous. I wanted to push away this disquieting insight, but grappling with the brain’s changeability would not leave me so easily. Two weeks after I left the hospital, I began a requisite yearlong internship. My placement was a continuing care retirement community, also known as a CCRC, which, I learned, is a campus that contains tiered levels of care, including independent living, assisted living, and skilled nursing or “nursing home” care. Rather than the acute brain traumas I encountered in the hospital, this assignment exposed me to the ordinary frailties of aging minds.
I shadowed the community’s two chaplains—Maurice and Ray. I recall Maurice listening with great attention to a woman with severe dementia. While I could not make any sense of what she was saying, Maurice seemed utterly engaged. Later, he spoke to me about the importance of listening to patients’ word fragments and connecting them to Latin morphemes. At the time, I found this lesson a bit tedious and far-fetched, but what strikes me now is how seriously he had taken her, how he had presumed a meaningful interaction was possible. The woman was not lost to all meaning—she needed careful and creative interlocutors and interpreters.
Each week I accompanied Ray to the Memory Enhanced Residence, a small wing of the facility where a dozen or so residents who had dementia lived in a homey environment, with a shared living room and dining table. After Ray read from the Bible and gave a brief reflection, he would ask a resident named Thelma to give the closing prayer. She had been a pastor’s wife, and the intonation and fervor of her prayers reflected decades of blessing meals, church meetings, and Sunday school classes. While I did not always follow the logic of her prayers, how one sentiment connected to the next, I sensed their sincerity and the calm assurance that overtook Thelma and that touched me, too.
After I completed my Master of Divinity degree, I began a nine-month chaplain residency program at a New Jersey hospital. One of my three assigned units was in the basement next to the morgue. It was designated for patients who had chronic conditions such as emphysema, who were not acute enough for the ICU but not stable enough to go home. Most of these patients were old. As the year progressed, the unit began to house mentally ill patients who had come to the emergency room and were waiting to be transferred to a psychiatric hospital. Physically frail old people and psychologically fragile adults of all ages were lumped together in the bleak, remote bowels of the hospital—a sad picture of the wider culture’s exclusion of these same populations. Perhaps this combination of patients was preparing me to understand some of the stigma around older persons with dementia. I spent a disproportionate amount of my time on this unit, finding many of its occupants starved for human encounter beyond what was clinically expedient or cognitively normative. Regular back-and-forth conversation held little comfort for many of these patients, who did not have the energy or attention for words.
A few months after I completed the residency, I was hired as the chaplain at a 1,400-resident CCRC on the New Jersey Shore. The campus contained eight buildings of independent living apartments, connected by hallways and a sky bridge, and one five-story building of assisted living and skilled nursing rooms. I served the residents who lived in this latter facility, called the Gardens, which sat on the edge of campus, detached from the rest of community. It was here where my specific passion for persons with dementia and for the philosophical and spiritual issues surrounding the mind’s vulnerability was forged.
On my first day at the Gardens—the first day of nearly seven years—an administrator gave me a tour of each of the five floors. The only part of the tour I recall is my introduction to the fourth floor, a skilled nursing unit that had been designated for residents with severe dementia. I have a hazy memory of stepping just inside the doorway of the unit’s large activity room. A young staff member, wearing a Hawaiian shirt and floppy straw hat, supported an old man by the elbow as he lumbered across the room. I do not recall with clarity any other individuals who filled the room that day, only wheelchairs and slumped bodies. My guide told me that I would likely not spend much time here. With nearly two hundred residents under my care, I would find other (better, more productive) ways to fill my day than visiting persons who would forget me the moment I left.
Memory is tricky. I now wonder if he had indeed expressed his prejudices to me directly, or if I absorbed them indirectly, or if I simply carried them within myself. Nevertheless, I received a clear message, consistent with a dementia-phobic culture: my presence would not be needed with these particular residents, my absence would not be noticed. The unspoken corollary: I would not need these persons’ presence or be impacted by their absence. They were considered to have disappeared from themselves, and I was expected to disappear from them.
In 2014, I left the Gardens and moved to South Carolina, where my husband had accepted a two-year visiting academic appointment. During this period, I feverishly read and wrote about dementia and spirituality. I also began facilitating occasional workshops on the subject, as faith groups asked me for help in relating to their congregants with dementia. Populated mostly by professional and family caregivers, these workshops have kept me in direct dialogue with people who are intimately invested in the lives of persons who have dementia. After my husband’s position ended