Homeless
My mother, Ida, died a few years ago, but the way she died was another matter altogether, because in the week before her death she was quite convinced she was already dead.
Abstract
My mother, Ida, died a few years ago. By itself, her death could hardly be seen as a remarkable event. But the way she died was another matter altogether, because in the week before her death she was quite convinced she was already dead. Here's what happened. Well along in her 97th year, her body was failing in every way imaginable. The problem list? A virtual textbook of geriatric medicine: cataracts; hearing loss; a small lacunar brainstem stroke (vertigo, diplopia), which had knocked her walking, already shaky, down a notch. Third- degree heart block, pacemaker duly implanted; atrial fibrillation; left ventricular hypertrophy from long-standing hypertension; vasospastic angina. Ischemic colitis, following the block-related bradycardia, which had mercifully resolved; a bleeding prepyloric ulcer, the antibiotic treatment for which was, in her view, decidedly worse than the disease. Urinary incontinence (pads, wet sheets, the inevitable recalcitrant bladder infections); osteoarthritis of the knees; impressive leg varicosities; and more than a little dependent edema. As though this weren't enough, there was the mucous membrane pemphigus that had appeared some 25 years earlier; even on low every-other-day doses the consequent chronic glucocorticoid therapy had slowly melted away her muscle mass, to the point where she was barely able to walk with a walker, or lift a glass to her lips even with both hands. The skin on her legs had become tissue paper: tearing, bleeding, ulceratingnot a pretty sight. Come to think of it, the relevant text here may not be a book on geriatrics; it may be the Book of Job. But mind and spirit? That was something else entirely. For, as she frequently put it (she was inordinately fond of aphorisms), The chassis is dented, but the engine is running fine. A marriage and family therapist during the last half of her life, she saw clients practically every day until about a month before the end. This wasn't perhaps so surprising. She was, after all, the person who gave herself roses when she made the honor roll in college because her immigrant parents didn't know American traditions; who got her doctorate in education in her 50s; and who instructed (in writing) that at autopsy, which she wanted performed, her brain should be examined to identify the source of my lan vital. But as her body increasingly failed her she found it harder and harder to manage at home. At the same time, her need to safeguard her autonomy, always important to her, became something of an obsession. Part-time aides and helpers, a stair elevator, and hand grips in bathrooms and other strategic spots got her by. Over time, however, it became clear to everyone but herself that these arrangements weren't really working, resulting in occasional medical and functional crises. The idea of a full-time live-in companion and, ultimately, moving to an assisted living facility, were rejected, haughtily, out of hand. And who can blame her? She and my father had built our house, their first (and designed by an architect cousin), in a quiet bedroom town in 1940. After my father died, she'd lived there by herself and lovingly maintained it (new roofs, painting, wallpapering, and the like) for half of the 60 years she was in it. Its gardenswildflowers, roses, peonies, irises, not to mention the biggest Franklinia on the eastern seaboard (she claimed)were her pride and joy. (She knew the Latin names for every plant, shrub, and tree and would happily tell you what they were.) My sisters and I sometimes said to each other that she would literally rather die than move out. Yet, in her final months even she started talking about moving. This was not every day's decision. Some days, leaving was declared unthinkable; other days, she was unequivocally finished with the house and named the assisted living facility where she wanted to go (she had once been on its Board). Then came the days of increasing somnolence, tachypnea, and cyanosis. And, soon, ambulance; hospital; oxygen; endless questions; chest x-rays; CT scans; lung scans; antibiotics dripping in the vein; and chest tap. Here the plot thickens. In the depths of that last admission she was truly out of it for several days: delirious, babbling, seemingly reliving large chunks of her life, then periods of unresponsiveness. During one long night of delirium, she kept repeating, Is it easy? Is it hard? and when, on a hunch, my wife asked, Ma, are you asking about how hard it is to die? my mother had said simply, Yes. Her doctors and we were quite convinced on several occasions that the end had come, but she backed away, somehow, from the precipice. Her respirations and oxygenation improved rather suddenly. A few days later she was again quite alert, although very weak, and managed to make it out of the hospital to a skilled nursing facility not far from her house (she'd also been on the Board of this one). Sitting with her a day or two later while she ate supperincredibly slowlyshe suddenly paused and asked, very clearly: Do you mean to tell me I'm still alive? I thought I was dead! Of course you're alive! What were you thinking? Silence. Then someone said: You know, Ma, what people do to be sure they're alive? They pinch themselves. She put down her glass, reached over, and very deliberately pinched her wrist. A peculiar expression crossed her face, and she said: Well I'll be damned! Although we had no reason to doubt her seriousness, things had taken such an unusual turn that we did wonder if she was making some kind of strange joke. But it was not a joke. Over the next several days she made it quite clear that she was not at all certain she was alive. I was sure you were here at my funeral! she said at one point. And to the extent she recognized that she was still alive, she wasn't best pleased. Dying is so hard, and it's so boring! You mean I'm going to have to go through this all over again? We tried to reassure her that she hadn't died in the first place, but she didn't seem to be really listening. Quite conscious but increasingly distant, she refused all care, quietly stopped eating and drinking, and died in the nursing facility about a week later. Over the next few months, we pondered what this curious state of mind could possibly have meant. We wondered if it was simply the final stage in her lifelong struggle to confront mortality. We were aware, in that connection, that in her last years, she did what she'd always done when confronted with a new and challenging problem: She read a book about it. (In this case it was Sherwin Nuland's How We Die (1); Chapter One, The Strangled Heart, in her copy was particularly well thumbed.) We wondered if part of herher true inner selfmight actually have died during her delirium. But those explanations seemed doubtfulafter all, delirium hardly ever results in people believing they're deadso we gave up thinking about it. Then not long ago we stumbled on a report of two homeless patients who, although quite alert and coherent, had come to believe they were dead (2). The author, a psychiatrist, suggested that homelessness had ruptured his patients' fragile connections to the world, leading to the eventual disintegration of their identities and the spiral into existential nothingness. He also pointed out that the state of mind in which a person believes either that they and the world don't exist, or that they are dead, was first described in the medical literature in 1880 by a French psychiatrist named Jules Cotard (3). Cotard's syndrome, which is not common, is considered to be a delusional state (delire des negations), primarily associated with severe depression, schizophrenia, and multiple sclerosis. It has also been described, however, following trauma, during extreme hyperthermia or self-starvation (3), after torture (4)and now, with homelessness. There's a lot more to homelessness, it seems, than meets the eye. Most of us can't even imagine this poignant and diffuse condition, this absence of belonging, both to a place and with the people settled there (5), a condition so corrosive that it can shred the sense that you and the world even exist. Is it any wonder that refugee status, and immigrationeven moving to a new housecan be so intensely disruptive? Should we be surprised that so many older people are terrified by the idea of moving into a chronic care facility? In this light, my mother's belief she was dead may not really have been a delusion after all. More than likely, she simply came to realize that her crumbling body had, finally and irreversibly, torn her up by the roots, cut her off from a central part of her identity, her home. Although she was well protected, to be sure, from the humiliation and physical misery of living on the street, the existential distress of being homeless was harsh; disruptive enough, it seems, to create a state of mind that violated Descartes' fundamental dictum, Cogito, ergo sum. I suppose we'll never really understand why she thought she was dead. But at least we know she's no longer suffering the torments of homelessness. Rest in peace, Ida.