Last June 1994, I made a Father's Day excursion, journeying from Los Angeles to Riverdale, New York, to visit with my ailing dad at the Hebrew Home for the Aged. Dad had always joked about the inequity that his birthday and Father's Day tended to coincide, robbing him of the double recognition (and doubling of presents) that he loved. Several weeks before my visit, he had suffered two "minor" strokes. If ever there was a misnomer in medical vocabulary, "minor" stroke is it: No stroke is minor, especially for someone who was eighty-three years old, with a history of cardio-vascular symptoms, Parkinsonian syndrome, incontinence, impaired ability to walk, depression, and senile dementia. The stroke produced some weakness on his left side; he was also exhibiting violent, agitated, and at times unmanageable behavior toward those attempting to assist him.
As I drove to the nursing home, several ironies occurred to me. My father had been a physician who specialized in vascular and peripheral vascular disease, tending to treat an elderly population. The inevitable passage of time has reversed the physician-patient relationship, but without the patient having any realistic hope of healing himself, with no option of recovery. My dad knew nursing homes intimately from his medical training and practice; he consistently spoke of his hatred for them, even the well-run ones, finding them confining and depressing. He was right, of course.
I experienced guilt about my limited caretaking for my dad. My bad conscience for not taking him in to live with me and my family is considerable, even though space and circumstances do not realistically permit such an arrangement. I have a small home in Los Angeles, already overcrowded, with a toddler and infant both still in diapers. My father would require twenty-four hour attention, several shifts of full-time aides. But to encounter him here as an inmate seems unbelievable, slightly unreal. I berate myself for not doing more for him. The guilt, sadness, and self-reproaches often become unbearable.
I found my father sitting slumped over in a wheel-chair in the lounge of the Hebrew Home, surrounded by magnificent art. The Hebrew Home in Riverdale prides itself on its extensive collection of paintings and prints; along the corridors one finds original Picassos, Chagalls, and Ertes, as well as an excellent collection of Judaica. The beautiful paintings and lithographs provide a glaring contrast to the condition and appearance of the residents. In this bright, spacious room, I discovered rows of geriatric patients lined up against the perimeter, with one row in the middle, facing a picture window with a stunning view: a vast panorama opening up to the Hudson River, the Cloisters, the New Jersey Palisades, and the George Washington Bridge. The living corpses seemed oblivious to the spectacular view.
To enter this lounge, at least for the uninitiated, is to enter a grotesque spectacle: wheelchair-bound individuals, many with contorted mouths, protruding tongues, twisted bodies, uttering bizarre sounds. The cries and wailing alternate with an equally eerie silence; sometimes the sounds are angry (protesting some food), sometimes poignant ("get me out of here"), sometimes incoherent.
Here, with my father, were strangers slouched over, some sleeping, some inert, staring, being attended to, not being attended to. The aides appear good-natured and professional; perhaps they are on good behavior, for it is Father's Day, after all. I experienced disbelief thinking of my dad sitting in this setting for hours at a time. I wondered how the nurses, assistants, and staff accommodated to such an ambience. I tried to conceive of how much my father suffered with the sights, sounds, and implications of this morbid scene. I was struck by how little interaction there was between patients, the absence of conversation, even trivial exchanges. The wheelchair brigade was predominantly a spectacle of silence, waiting, of existential inertia.
I was appalled by my father sitting there, even more disconcerted by his vacant look. He, who had been so extraordinarily vital, so energetic, so expansive about life, now appeared absent. He, who had practiced medicine for more than fifty years, who had published thirty-five papers in the clinical literature, who had a zest for travel, art, music, and literature, a wide-ranging curiosity about people and the world, a man who was cheerful, exuberant, and deeply engaged with life - now he had vanished. Yet he was physically present, and recognizable, at least externally. His posture typified his mental state: hunched over in his wheelchair, head perched on his chest, eyes closed. Dad was poised in a state of semi-sleep, semi-con-sciousness. Maybe this somnambulistic state was adaptive, shielding him from the grotesqueries of his daily situation, from an all too painful awareness of his deterioration.
In our time together, he never initiated a conversation. He responded tersely to questions, a one sentence answer at most, sometimes only a few words. He rarely made any requests. That troubled me - it was strangely out of character for him. Only activities that affected his physical needs bothered him. Prior to the stroke, he could get around with a walker. He now needed help to stand up, and he could barely walk a few steps. Those with walkers on his floor were the exceptions. To watch him walk so tentatively was profoundly sad for me; it re-called his former gait, his quickness of step and his determination to get things done, to arrive at his destination. He required help to use the bathroom, to have his clothes changed. Chronic incontinence has necessitated diapers, but he resisted.
I imagined the potential shame of his situation. As he sat lifeless and disabled, he seemed to have emigrated. His blue eyes, once so sharp and animated, were dull. This once emotional and flamboyant man was deflated. He emitted no emotions.
His life at eighty-three had been reduced to the satisfaction of physical needs: sleeping, eating, defecating. His full and complex life was compressed: all of his essential belongings fit in one room, in fact, reduced to one small closet, one chest of drawers. He showed no interest in people, utter indifference to financial affairs. A person who was characteristically fascinated by social and political events nationally and internationally, he has stopped reading The New York Times; and though he watches television, he appears not to register what he sees. An avid sports fan, he seems barely interested in watching a baseball game. I asked him if he was following the O.J. Simpson case, and he answered no, slightly disoriented.
He had lost all sense of time and of events and probably of place as well. He did not know that it was Father's Day. He could not remember his age, but vaguely recalled that he had just had a birthday. He still ate with a certain relish, but post-stroke food is not very appetizing, mostly pureed. He needed to be fed, even though he has some strength in his arms and hands.
I could not distinguish his regressive behavior from his physical disability. When I asked him less than an hour after lunch what he had eaten, he fumbled. He could not remember. He was resigned to this short-term memory loss by now, but was still confused by it. He good-naturedly said that the meals were good.
Depression is not easily differentiated from dementia in the elderly. I was unable to discern which was predominant in my father's case. He had crossed over into a zone of mental deadness, emotional detachment, devitalization, and indifference. He seemed unable to associate mentally or verbally. He appeared permanently exhausted, disconnected. I could not distinguish if he was truly sad, or simply not there. I certainly was a terribly sad observer, wishing I did not have to observe and experience his state.
Yet, he was alive and physically present, albeit disabled and diminished, but with no complaints, no requests, no demands, no desires, no sense of the future. With memory, interpersonal contact, and cognitive capacity impaired and probably irreparable, I wondered what human qualities remained. Then, he became momentarily alert: He smiled his winning and charming smile; his blue eyes twinkled; his emotional isolation suddenly ruptured. But, it was transient, immediately followed by idlessness, vacuity, and that numbing silence.
He even ventured a few sentences, the most resonant for me being his affirmation of love for me and my family. Perhaps this simple "I love you" articulated all that needed to be said; perhaps it hadn't been spoken enough and spontaneously when he and I were younger. He suddenly said, "you've got to fix me," implying an awareness of being broken, or deeply damaged. When asked how or where he needed fixing, he faltered, retreating into silence, unable to complete his thought.
Strokes, of course, do great and permanent damage to the brain. Those recovering from
strokes often express anger and extreme emotional and depressive reactions, often displayed as reflexes. Although I did not witness this on Father's Day, my father was resisting touch on the part of the nursing staff, refusing help on the part of a devoted and deeply trusted loved one. Sometimes, he would bite. Sometimes his anger escalated into rage and his stubbornness became transformed into an out-of-control state, where four aides were required to restrain him in order to change his clothes. If I was impressed by this residue of physical strength in him, I was terribly saddened by his lack of conscious awareness of his aggressivity, or of what motivated his rage.
In the face of this awful extinction of my father's self, and my own sense of helplessness and inadequacy as a bystander, exacerbated by the distance from L.A. to New York, my father's family reacted with an extreme degree of emotion, often impairing their perceptions and judgment. All of us knew that he wouldn't improve, that he wouldn't regain his previous competence, even recapture his former impairment prior to his stroke. None of us knew how long he would live. My knowledge about his condition was inadequate; nor did I know what to do with this abundance of guilt about my father, how to manage my despair about his loss of function and intellect, how to channel my sense of waste about the utter extinction of his personality, my grief at the loss of his vitality. I became incompetent and sad; I was numb to my own feelings. I sensed this in others, too.
One outlet for my family's helplessness and distress was to pressure and vilify one another; my youngest brother became inadvertently the target for much of the venting. He was burdened with many key decisions and responsibility for my father's care. Accusations flew, blame escalated, vituperation replaced empathic understanding, emotional outbursts overwhelmed compassion for one another, and for my father.
Family members, anguished over my father's state, exaggerated an already horrific situation. They lobbied for him to receive even more assistance and attention; they demanded a full-time companion. They vehemently insisted that he be made to feel more comfortable and argued that he needed to be spared the horrors of the lounge, although it was unclear that he registered any of these sensations. Although these recommendations were unsolicited, they demoralized and depleted the energy and self-confidence of the immediate family.
The nursing home, with its well-trained administrative staff and "inter-disciplinary" approach, reassured us appropriately that my father was currently obtaining optimal care and that any changes would be wasteful of resources, non-therapeutic, and a huge expenditure of money. Money, of course, was on everyone's mind (except my father's) and yet remained unspoken.
My father anticipated his fate and put sufficient money in trust to finance these expenditures. The Hebrew Home for the Aged is one of the country's more expensive nursing homes; entry is difficult, waiting lists are long, sometimes influential connections have to be used to secure a bed. It is extremely costly - $8,500 per month - and none of the expenses are tax-deductible or reimbursed by third parties. Yet another irony: $102,000 annually to sustain my dad whose quality of life was minimal and whose inner world had apparently vanished. I was skeptical about the use of this considerable sum of money to sustain his care for an indefinite period of time. I reproached myself for asking the question, even thinking the idea seemed shameful.
While I was a bit relieved that my father probably did not realize his plight, I was puzzled by the ethical, social, and medical indications of pondering when enough care and attention is enough. These issues admit of no facile answers. My father left written instructions about his wishes for no heroic measure to maintain life when he was lucid and when he signed his living will. But his current status had become ambiguous. I was unable to strike a balance between a forbidden desire to hasten his death and a dread of perpetuating his tragic and empty life.
Father's Day 1994: a day to be present, to bear witness, to love, to be loved, to think thoughts about sickness, health, death, mortality; in short, a day to reflect, a day for self-examination. With my father there but gone, with him appearing not to care or to know anything (he frequently replies to a direct question by saying that he does not know), with symptoms of dementia mingling with depression. I speculated about what would happen, what ought to be done. Maybe things would get worse. Maybe he would hang on to life (to life?) longer.
And what if anything is the meaning of this Father's Day with its no exit ugliness and geriatric grotesqueries? I am not sure. Normal mourning clearly begins before the death of a loved one; linear thinking about the terminal stage of the life cycle no longer makes any sense, especially as one's parents age and cling to life. Grief for the other precedes the organic end of life.
In my middle forties, I became a dad. I value being remembered and affirmed on Father's Day; the day now has a resonance to me that it previously never had. But I still see my dad there slouched over, and I can't extrapolate any significance from his situation. Dad had consistently expressed his desire not to burden or disappoint me. Perhaps my father's final legacy to me is one last piece of provision. He confronted unbelievable decline and disability without overly burdening or disappointing me. He would exit from life without oppressing his sons. A negative freedom is still freedom, even if one's options have been exhausted. To reflect on him enduring his last days with at least that degree of dignity intact may be salutary in at least one way. Remembering him will strengthen me when I am faced with a similar context and choice.
My father died quietly eleven weeks after Father's Day. His body gave out, unable to resist a "minor" infection.
- David James Fisher
The American Psychoanalyst: Quarterly Newsletter of the American Psychoanalytic Association, 1996, 30/2, pp. 29-30. Reprinted from Tikkun Magazine: A Bimonthly Jewish Critique of Politics, Culture, and Society. Subscriptions from Tikkun, 251 West 10th Street, 5th floor, New York, N.Y. 10025.