Alzheimer’s disease, Houdini, and America’s invisible caregivers
I have decided for the following reasons to take my own life. This is a decision taken in a normal state of mind and is fully considered. I have Alzheimer’s disease and do not want to let it progress any further. I do not want to put my family or myself through the agony of this terrible disease.The New York Times
Kitwood argued that care settings shaped by malignant social psychology can actually accelerate neurological decline. He critiqued the “standard paradigm” of dementia that blames only the organic progression of the dementing disease for the decline that sufferers experience. The silent, stigmatizing partner in the disease’s dynamic—that is, the cultural bigotry against both cognitive impairment and old age—gets off scot-free.Herein lies the frightening yet hopeful prospect: The person with dementia does not simply disappear on her own. It is not just a matter of the private malfunctioning of her private brain. It has to do with our malfunctioning, our diseased public mind.
When I walked into the program room of the nursing home’s dementia unit, Ruth was yelling and pounding her fists on the table. She had recently moved to the unit, where I had met her a few days before during my rounds as the chaplain. At that time, Ruth was unhappy about her move, but not distraught like she was now. Seeing my shock, a staff member explained, “She’s been terrible to us—yelling out bad things at everyone who walks by. She said she was hungry, that she wanted lunch. But she just ate lunch, so I got her pudding for a snack. And she threw the pudding at me, and it splattered all over the floor. Then she called me a bad name. I’m done; I’m just done.” She turned her back to Ruth and walked away.
Reading Kitwood helps me unpack some of the malignant social psychology in this brief encounter. There is infantilization: Ruth is not permitted the food of her choice, because she “just ate lunch.” There is ignoring and objectification: The staff member talks over and about the resident as if she were not there, as if she were a nonentity. There is imposition: Overriding Ruth’s stated desire, the worker insists she must have a snack instead of a meal. There is disparagement: The staff member is clearly angry with Ruth, blaming her for her bad mood. There is withholding and banishment: The staff member leaves Ruth, declaring that “she is done.” Ruth is left alone. Malignancy now hems her in.
I watched a dining room staff member approach Ruth. “What would you like?” he asked. “A sandwich or something,” she replied. He returned from the kitchen with a peanut butter and jelly sandwich. Ruth immediately bit into it. “Thank you, I never thought I’d be this happy with a peanut butter and jelly sandwich,” she said.
Kitwood understood malignant social psychology as “in the air”—part of our cultural inheritance, not a phenomenon to be blamed on individual caregivers. Malignant responses to dementia, in his analysis, revealed tragic inadequacies in our culture, economy, and medical system, which often define a person’s worth in terms of financial, physical, and intellectual power.
Our particular veneration of cognitive acumen reflects what bioethicist Stephen Post calls our “hypercognitive” culture, which generates a prejudice against the deeply forgetful. “Dementism”—the term he uses to describe this bias—permeates our institutions. Most theological schools offer little or no training to future pastoral leaders about aging and dementia. Faith communities often pump tremendous resources into ministries for young families and children, with little attention to elders, even though their numbers may be greater. Building regulations often ensure structures for wheelchair access but fail to offer accommodations, like clear signage, for people with memory issues. Public funds for adequate dementia care are lacking. Assisted living facilities are under-regulated. Pharmaceutical companies often push the use of off-label, potentially risky antipsychotic medication for persons with dementia. Remediation is needed at every level.
Ours is a culture fearful both of the body’s power and its powerlessness. The body is unwieldy and dies; the body is a source of perpetual conflict. It is at once our home and our battleground. Those bodies in need of hands-on care by others are objects of cultural contempt. Is this because they lay bare our own collective fear of impotence? Perhaps those bodies most charged with hands-on care of other bodies also bear the taint. The same malignant forces that marginalize the old and the cognitively-impaired also marginalize their caregivers, who are often the most economically vulnerable and politically invisible people in American society. In my seven years working at a nursing home, I can count on one hand the times I saw administrators on the dementia unit spending time with residents and care staff. Both the vulnerable care staff (often women, black, immigrant) and the vulnerable residents (often immobile, voiceless, dependent) were relegated to the same space. The curtain was drawn, hiding them from view—a vanishing act with no scheduled reappearance.
He has been raised; he is not here. Look, there is the place they laid him.—Mark 16:6b
The original ending of Mark, the earliest Gospel, includes no post-resurrection sightings of Jesus. When women came to the tomb to anoint Jesus’s dead body, in Mark’s account, a young man dressed in a white robe—an angel?—pointed them to absence: to nothing but a heap of empty clothes. The women at the tomb were to believe based on what was not there—a faith based on disappearance. They responded the way any god-fearing people would: They fled the scene, deathly afraid. Uncomfortable with this silence and with the last image being one of women fleeing in fear, some scribes of Mark added post-resurrection encounters with Jesus. The later Gospel writers chronicled rather detailed meetings between the risen Jesus and the disciples. Jesus shows them his feet, hands, and side; he walks through closed doors, breathes on them, and makes breakfast for them on the sea shore. In John’s Gospel, Mary Magdalene mistakes the risen Jesus for a gardener, until he speaks her name. There is some comfort in these tales of reappearance. The disciples experience, with their senses, a newly-constituted but still bodily Jesus—and thus gain what we moderns might call a sense of “closure” in the wake of his traumatic death.
I am drawn to Mark’s original ending; it rings truer in light of the abundant absence that marks all earthly existence. The dead don’t often visit us again (imagine the silence at the yearly Houdini séance). For every one person now living on earth, approximately fifteen people have died. There comes a tipping point in the timeline of our own lives when we know more of the dead than of the living.
We have all forgotten much more than we remember. The proliferation of vanishing, more and more, is what we have. Disappearance does not necessarily mean obliteration. What remains might be enough. Beholding something as quotidian as a dead body’s dirty laundry might be enough to ignite and kindle undying devotion.
In my early days at the nursing home, Delores walked the halls wearing a blazer, with a folder tucked under her arm. She repeated certain words, staring people right in the eye with purpose, however unnameable that purpose was. She had been an executive assistant to the CEO of a high-powered firm in Manhattan. Within my first year, Delores no longer walked, no longer attempted executive functions. Rather, she often sat slumped in her wheelchair, seated at a table with other residents whose slumping put them at risk of falling forward. The table was not technically a restraint, so its use as a means to stop residents from falling did not violate state regulations. I had almost no context for Delores and neither did the rest of the staff. She must have made enough money to afford years of skilled nursing care, but she had no visitors. They said her sister had visited on occasion, but these visits had ceased by the time my tenure began, probably as the sister aged and Delores’ confusion increased. After all the years of deep dementia, she continued to make eye contact (she had the clearest blue eyes) and to turn toward me when I spoke her name.
Delores had a robust appetite. One of the floor staff, Karen, was assigned to help her with her meals, which meant she spooned the food into Delores’s mouth. By this point, Delores was mostly mute, rarely speaking, and even then, only syllables on a loop. Karen told me that, after dinner one unassuming evening, Delores said to her, clear as day, “Thank you.” Karen cried. She felt the heart-stopping impact of the blow: She knows. Month after month of feeding Delores in silence—and then these two words surfaced, drenched in meaning and terrible light. Poof! Behold the presence, loosed for a moment, fluttering onto the stage, unbound, balancing on an un-accidental utterance: Thank You.
Jack mock-sings into a salt-shaker when good music comes on. Jack gives hardy handshakes, especially to men. Jack is a person who is a father, grandfather, husband, brother; a person who made grandfather clocks; a person who has brain disease and a round belly; a person who taught me five-card stud; a person who is disoriented “times three,” as they say on the unit; a person who loves classical music and chocolate; a person who has forgotten his children’s names. The modifiers modify, however painful, however sweet, however grotesque, yet the person remains, substantively. What else but an affinity for life is behind the enjoyment of playing instruments, travelling the world, perfecting omelets? What else but a will to survive is behind piloting a cargo plane across the treacherous Burmese Hump and scraping your way through medical school playing the trombone in bars at night? The essences behind his previous life endeavors seem intact in Jack now—in subtle shades, often only known to those who spend time with him—while the activities that once embodied them have fallen away. The mystics might say what is left is a truer, purer self. The dissolving of all doing, the stripping away of the via activa, make straight the path for the naked, beloved self to emerge.
The definitions of “vanishing point” seem to point in opposite directions: the point at which parallel lines receding from an observer seem to converge, and the point at which a thing disappears or ceases to exist. In the former definition, the vanishing point is unification. In the latter, it is dissolution. Is the point convergence or cessation—or somehow both?
If I stand still and watch a person walk away from me, she grows smaller and smaller, until she reaches the vanishing point. She has not vanished from the planet—she has vanished only from my view. If I move toward her, her vanishing point comes slower; if I move away from her, her vanishing point comes faster.
Kitwood argued that as the degree of neurological impairment increases, the person’s need for psycho-social care increases. What traditionally happens is the exact opposite. As the degree of neurological impairment increases, the person becomes increasingly neglected and isolated, and thus neurological impairment increases faster—a vicious circle. Malignant social psychology hastens the vanishing point. Person-centered care tries to keep the vanishing point far off, to keep the person with dementia in view as a unified whole. The vanishing point, however, is always perspectival. The person with dementia exists beyond my capacity to keep her in my line of sight; she remains a person despite my limited powers of vision. Still, we must reckon with the disappearing—even if it is, in some sense, illusory.
Da Vinci’s The Last Supper contains perhaps the most famous vanishing point. Our eye is pulled into Christ’s head at the center of the composition; it is the aggregating point. We are drawn to and through the mind of Christ—both to disappear there and to gather there. Christ’s brain shuts down in his dying on the cross (dissolution); the mind of Christ merges with the divine consciousness (unification). As we reach the vanishing point, we both dissolve and converge.
Janet Adkins did not want to kill herself—she wanted to kill her future self, the deteriorated self she imagined. The Janet Adkins on the tennis court and at the piano killed the projected Janet Adkins in a wheelchair, unable to find notes on an instrument whose name she cannot recall. The self-determining Janet Adkins killed the dependent Janet Adkins. The strong Janet Adkins killed the weak Janet Adkins, before the weak Janet Adkins got a foothold. The story is a familiar one: the strong subjecting the weak—the strong eradicating their fears through expulsion of the weak. Is this not the fascist impulse, the imperialist compulsion? Or might it be the compassionate impulse, the yearning to be free of unnecessary affliction? How blurry the distinction between exterminating weakness and alleviating suffering.
It is advent again. I pull out my most cherished Christmas ornament, a handmade gift from my friend Maria. It is a small ceramic rectangle; on it, in relief, a woman is catching falling stars in her outstretched apron.
Sometimes we are lucky enough to witness luminous mysteries. To snag one is an even rarer gift. Maria had advanced cancer for much longer than anyone should. She underwent risky major surgeries as palliative measures. Chemo was a steady diet for years. Her will to live was tenacious. Although in adulthood she became a Presbyterian, Maria was raised as a Christian Scientist. After watching her live with terminal cancer with great serenity and courage, I can’t help but attribute some worth to what had surely been foundational to her childhood faith: mind over matter, spiritual awareness over unreal suffering. She endured ongoing and extreme treatments—not because she was in denial or paralyzed by fear—but because she wanted to enjoy as much time as she could with her teenage daughter, who had special needs. She wanted to take in the beauty of the earth, and to make art for as long as possible.
The last time I saw Maria was at the art show at which she gave me the ornament. Shortly thereafter, we exchanged emails. In her message to me, she attached a photograph of small pink blossoms on a barbed sprig, with these words underneath: “Patience can wait for thorns to bloom.” There are rare people whose faith leads them in universal, self-giving directions, people who commit their entire being to the spending of the self in love. A single mother, a chemist, an artist, Maria somehow managed to minister to everyone she encountered, perhaps especially in her illness. She kept flowering in thorns. At Maria’s funeral, I learned how—in the depth of her illness, at the point when she stood through entire church services to avoid the agony of sitting—she had shown up on her friend Ann’s doorstep, with a specially braided loaf of bread, after Ann’s cancer surgery. A short, round woman named Claire stood and shared the fact that the year before, knowing this would be her last, Maria had asked her, “Will you take this journey with me?” Claire said yes.
What does it mean to vanish well? After all, the result is always the same: You end up gone. There are no tricks to do or undo this finality.
Perhaps to do it well entails allowing others to help unbind you, trusting them to keep your secrets. The question comes to us—and one day, by grace, it may come from us: Will you take this journey with me? We are preparing our response. The time is upon us; the hour has drawn near.
I need your assistance to help me disappear. Help me learn now to befriend my various and small poverties, to accept help as part of being human, to allow everyday sufferings to tenderize my heart, to weep like Rachel for her children, to dance when the music impels, to welcome the hungry and naked aspects of myself and others, to reckon with absence as ineffable rather than evil.
As I vanish, untangling from this world of memory, will you take this journey with me, even when I cannot ask?
Lynn Casteel Harper is a Baptist minister, chaplain, and essayist. Her work has appeared or is forthcoming in Kenyon Review online, The Huffington Post, New Delta Review, CALYX, and elsewhere. “On Vanishing” is part of her book-in-progress, When I Have Dementia, which received a Deming Fund grant. She lives in Greenville, South Carolina. lynncasteelharper.wordpress.com