The Theft of Memory

by Jonathan Kozol

  One of the items he took out of the desk was a stiff manila envelope that was filled with photographs he’d taken, and addresses he had written, some of them in German. On the front of the envelope there was a notation: “Follow up—Vienna.”

  Julia showed the pictures to my mother, who told her they were from a trip they made, sometime in the 1950s, for a meeting with a group of Eastern European doctors who had managed somehow to obtain permission to travel to Vienna to confer with Western European and American physicians. Julia said that she became quite animated when she spoke of what she called “a secret meeting” in a room at their hotel with “a brilliant woman, a Hungarian psychiatrist,” who was planning to escape from Budapest and was looking for my father’s help in finding a position at one of the psychiatric centers in New York or Boston.

  Julia said my mother also told her they had traveled to Vienna on a famous train known as the Orient Express, which “began in Paris and went all the way to Istanbul,” or she may have said “Constantinople.” She said they had their own compartment but a young romantic couple they encountered in the dining car were so enjoyable to be with that they stayed up very late to talk with them and then met them in the morning to have breakfast.

  Julia left the envelope on my father’s desk so I could see the pictures. There were several of my mother standing on a sidewalk in front of the State Opera in Vienna. The others were apparently of doctors they had met. Then I returned it to the drawer where she said he’d found it. None of this, said Julia, seemed to have much meaning for my father.

  Of all the items he had taken from his desk, only the corroded nameplate from his former office door seemed to have stirred up some truly strong emotion. “It did mean something to him,” Julia said. “You could tell. The way he traced the outline of the letters with his fingers….I don’t know”—her voice choked up—“it made me feel like crying.”

  In that first year after he came home, he would often have his dinner at the dining table or while sitting at his desk. Silvia said she knew he liked the meals she cooked, because he ate voraciously. She also noted other aspects of his physical vitality, including the persistence of his sexual awareness and self-consciousness. “When I bathe him,” she reported, “he becomes embarrassed by his nakedness. But he sometimes reaches out and tries to touch my bosom. And when I turn around to get a towel, he reaches up and grabs me by the bottom!”

  One afternoon, Silvia said, her husband came to meet my father and remained to visit for a while. “Your father was very polite to him at first,” she said. He looked her husband up and down and seemed to have decided he approved of him.

  “Sir,” he said, “I think you are a gentleman.”

  I don’t know exactly what my father did at that point. He may have reached for Silvia’s arm or put his hand around her waist. Whatever it was, Silvia’s husband took it in good humor and did his best to make a joke out of the situation. “Hey, watch it! That’s my wife!” he said with pretended sternness.

  But Silvia said that Daddy did not find this to his liking. “He’s not a gentleman after all,” he said and turned away from him.

  “As soon as my husband left the room, your father brightened up. He had me to himself again, which is the way he liked it.”

  Did he enjoy the fact that he was home? The answer, Silvia believed, was obvious. Once, when he had to spend a few days at the hospital and “the ambulance man,” as Silvia said, brought him home and came upstairs and helped to put him back in bed, my father began to clap his hands. “He was clapping!” she repeated.

  I asked her if she meant that he was doing this to thank the man for helping him. “No,” she said. “Not for the ambulance man. It was for himself! It was like, ‘I’m home again!’ It was a celebration!”

  My mother was happy he was home, but naturally, with her state of mind so clear, my father couldn’t offer her the company or conversation she enjoyed. After he had gone to sleep, Silvia or Julia would have dinner with her. Then they would sit up with her to watch the ball games or the news, or simply chat with her until her eyes began to close.

  “Once,” Silvia told me, “when your mother closed her eyes and I thought she was asleep, I switched the channel to the Spanish-language station. She suddenly sat up, wide awake, and she seemed confused. She told me, ‘I don’t understand a word they’re speaking.’ It’s a noisy program. She thought there was something wrong with her because she couldn’t understand the voices. Then she looked more closely at the screen and I could see she was relieved. She’d figured it out. She said, ‘I know. I understand what I don’t understand. It’s because it’s Spanish.’ ”

  Before she fell asleep that night, she asked if Silvia would “go in and check the baby.” Her solicitude on his behalf was only intermittent at the start, but after a few months went by she seemed to grow more tender and protective.

  —

  In the second year after my father had come home, he developed an infection in his urinary tract, which had been a problem a couple times before while he was in the nursing home. When it recurred and then worsened rapidly in December of that year, Julia tried to reach his doctor, but, when she had no success, she telephoned Lucinda and, at her advice, she called an ambulance and brought him to the hospital.

  When they got there, Julia said, the woman at the registration desk wasn’t very friendly. “She didn’t want to let him in. I had his Medicare card and his insurance information, but she wouldn’t look at them. That’s the only time that’s ever happened there. I don’t know what her problem was. I had to plead with her.

  “ ‘Why did you bring him here?’ she asked.

  “ ‘Because he’s sick,’ I said.

  “ ‘How do you know?’ the woman said. ‘He can’t even talk.’

  “I was so angry! He was right in front of her. ‘Babies cannot talk,’ I told her, ‘but we know when they’re in pain.’ ”

  The woman at last reluctantly admitted him. He was seen by a physician who confirmed that Julia’s judgment was correct.

  He remained in the hospital for three or four days. After the infection was brought under control, the doctor taking care of him told me that, in view of his history of similar infections and the severity of this one, it would be advisable to have his urine tested weekly after his release. He said that this should be a standing policy from this time on, with antibiotics prescribed without delay if indications of infection were to reappear.

  Julia had left a message for his doctor when she took my father to the hospital, but neither of us knew how long it was before she got the message and went in to visit him. Julia said she thought the doctor had been out of town, so it’s possible she didn’t get to see him in the hospital.

  Once he was home, I sent her a fax about the weekly urine testing recommended at the hospital. She replied that this was acceptable to her. I told her that Lucinda would be glad to take the samples. She answered that this plan was “satisfactory.”

  I was troubled, however, that this plan of action had not been proposed by her but had to be suggested by another doctor. I was also perplexed that, knowing of my father’s history, she had not initiated any plan like this prior to the time when an advanced infection had required him to be admitted to the hospital.

  It was another year and a half before my father had to be admitted to the hospital again. In this case, the antibiotic he’d been taking when it had been needed to suppress infection in his urinary tract had ceased to be effective. Again, his own physician could not be reached for several days. Her office said she was away.

  It was a resident at the MGH who told me the infection had, among its consequences, led to a fluttering of my father’s heart. (“Atrial fibrillation” was the term he used and then defined for me in words that I could understand.) Once he was stabilized, the doctor said a new and stronger antibiotic ought to be prescribed to counter the resistant organism that had led to a recurrence of infection.

  The day before my father wa
s sent home, his geriatrician told me that, since she had returned, she had given information on his status to Lucinda, even though Lucinda had been at the hospital and had been following the situation closely while the doctor was away. The doctor said she had decided to prescribe a stronger medication.

  I need to pause here to explain the feelings that were running through my mind about the geriatric specialist who’d been recommended to me for my father’s care. First of all, it is only accurate to note that, as a member of one of the medical groups in the Boston area, she was always able to rely upon the services of one of her associates when she was out of town. And, when my father was sick enough to be admitted to the hospital, I knew that he would not be left without the treatment he required.

  What I found more than a little maddening, however, and Silvia and Julia considerably more so, was the lack of continuity in dealing with his doctor and the difficulty that we faced in getting through to her directly, and without inordinate delay. By way of contrast, my mother’s physician, who was one of the busiest and most sought-after doctors in the city, was almost always rapidly available. When Silvia thought my mother ought to be examined, for whatever reason—she was having problems with her legs, for instance, which at times became severely swollen—I would call her doctor or, more commonly, Silvia would call him on her own, and, if he was busy when she called, she said he always called her back before he left his office for the day.

  It was, she said, entirely different with my father’s doctor. “Some other person in the office is the one I have to deal with….” Even when the doctor did return a call, she sometimes seemed dismissive of Silvia’s concerns. When Silvia requested a flu shot for my father, for example, at the onset of cold weather, the doctor told her she didn’t think that this was really needed, and, besides, she said she didn’t have “supplies available.” Silvia, whose children and grandchildren had just had their flu shots, was unwilling to accept this. Instead of wasting time in pestering the doctor, she called my mother’s primary physician.

  “It’s essential,” he advised her. “Bring him in the first thing in the morning before my office opens.” I regretted that he was unable to take on my father as his full-time patient. But the point that counted at the moment was that Silvia had the common sense and activist mentality not to let the geriatric doctor deny my father something that he needed, and at the time he needed it.

  There was another, and more complicated, issue that I needed to confront in my dealings with his doctor. For reasons I will clarify in greater detail later on, I had refused to sign a document known as a DNR—“Do Not Resuscitate”—which is commonly agreed to by the healthcare proxy in the case of someone of my father’s age and physical and cerebral condition. Instead, I had insisted that my father be on “full code” when he was in the hospital, a policy his doctor seemed to have accepted once I reinforced it to her personally but which she told me was regarded as “unusual” for someone in his situation. What troubled me was not that medical professionals working with the elderly might find my wish, as she had said, unusual or even inappropriate. The problem, for me, was the formulaic way in which the larger question underlying all of this was almost automatically addressed.

  What I mean is that his doctor and, on occasion, others who were tending to my father, when they spoke to me about his situation, tended to employ what always sounded like a scripted nostrum, redolent of what one might expect to find in books of pop psychology, about “the quality of life” versus the worth of life itself. There was also something in the way they spoke that led me to believe that they perceived themselves as ethicists—specialists, as it were, in the theology of life and death—a perception to which I felt they had no rightful claim. In some instances, moreover, I was given the uneasy feeling that the high-minded ethical positions they assumed on the point at which a person’s life no longer ought to be preserved might be an unconscious or only semiconscious way to reconcile professional integrity with the economics of the healthcare system and with that larger set of economic values that increasingly determine medical priorities in the United States.

  In any event, so long as my father still took even modest amounts of satisfaction in his daily life—and I relied far more on Silvia’s and Julia’s and my own perceptions on this matter than those of physicians who might spend no more than thirty minutes in his presence at a time—I thought his doctor ought to be as diligent in coming up with good preventive and protective measures for my father, and without my being forced to beg for them, as pediatricians, for example, normally would do in treatment of a child who might suffer from a neurological impairment.

  In this respect, I could never quite get over the debilitating sense that I was pulling constantly against a very heavy weight, not of outright opposition on the doctor’s part, but of passivity, procrastination, and inertia. “If you suggest it, and insist upon it, then I will agree to do it.” That’s essentially the message that I got. But, even after we had come to an agreement on one area of treatment, the problem would come up again in a different context.

  At the same time, and making things a good deal more complex for me, I could never totally suppress the recognition, or at least suspicion, that much of my irritation with my father’s doctor served as a distraction for me from a wholly different matter that I knew had no direct connection with his actual well-being. At some level, I think I was aware that selfish motivations of my own might very likely be at stake in the decisions I was making. As I imagine many people who have been in my position will not find it hard to understand, the truth is that I did not want to let my father die because I could not picture life within this world without him. As nonresponsive as he often was, and physically enfeebled as he had become, I could not escape the crazy thought that I still needed him.

  A sensitive young doctor, a resident in cardiology who attended to my father once when he was in the hospital, spoke with me of my concerns and, although we didn’t have much time to talk, she said she’d keep in touch with me. She later wrote me a reflective letter in which she, who was the daughter and granddaughter of physicians, told me that she was at home and dealing with the same dilemma, in the case of her grandmother, that she and I had talked about when we were standing at the nurses’ station just a few feet from my father’s door.

  “We are facing the same decision you are facing with your father. It is so unbelievably striking for me to be on the other side of this decision-making process—unbelievable, I mean, that, in this family of so many doctors, we are unable to make decisions about my grandmother’s care, because so many of us are unready to let go. It is so hard to tease out what we are holding onto for our own sakes, as opposed to hers.

  “That said, I am enjoying my time with her so much. She is the most brilliant woman I have ever met. She is totally demented now, and has been for some time, but her delusions are so consistent!” (This part made me think about my mother, who, though certainly not “demented,” did, as we have seen, indulge her fantasies—delusions, if that is the proper word—which were consistent too.)

  Her grandmother’s delusions, she went on, had to do with ordinary details of caring for her family—“getting me married,” “fixing my hair….” Before departing for the hospital, she said, her grandmother had been “sitting on her bed, phone in hand, trying to reschedule a hair appointment. This was her fixation….

  “I know you are going through similar things. I just understand now more than ever.”

  When we had a chance to meet again and share our feelings on these matters at much greater length, I asked her if she’d thought at all about the question of priorities to which I have referred in drawing a comparison between what I had seen of geriatric care and what I knew of other fields of medicine, including pediatrics. I told her I believed that what I’d been observing seemed to offer evidence of something that may well appear, from a purely economic point of view, to be an absolutely rational distinction in the valuation of the worth of human life. A child
—or anyone who’s relatively young—has, potentially at least, a life of productivity ahead. A ninety-eight-year-old neurologist who suffers from dementia has no further value to the economic order.

  I told her I could not help thinking that the willingness to relegate a person in my father’s situation to a lower and less vigilant degree of medical attention was an accurate reflection of the values of a social system which, as I had learned in my own work in education, measures human life, more frequently than not, in rather hard-nosed and explicit terms of future payoff to the national well-being. (“Future productivity” is one of the most commonly heard phrases used in governmental circles to justify expenditures for preschool or for early infant care. “These babies, if well treated now, will someday be taxpayers and contribute to our national prosperity.” Elderly and unwell people will, of course, contribute nothing to our national prosperity. They are simply “sitting there,” using up the wealth of those who still pay taxes.)

  As a physician who had come to her vocation with the highest possible ideals of selflessness and service, she was not prepared to countenance the likelihood that economic valuations of a patient’s “worth to the society” would ever be permitted to intrude upon the life-preserving obligations of a member of the medical profession. She did, however, recognize, although somewhat reluctantly, that structural arrangements, or financial limitations, or governmentally established policy decisions, might have the effect of making it more difficult for doctors to fulfill these obligations.

  She also noted that the field of geriatrics has not been accorded the level of prestige that many other areas of medicine command and that the pay scale is far less than in most other specialties. As a consequence, she said, not enough doctors of her age, burdened by the heavy loans they’ve incurred to pay for their tuition, were being drawn into this specialty. The number of geriatricians, accordingly, was insufficient to address the needs of the increasingly large numbers of the elderly, and those who did sustain positions in this field had much larger caseloads than would be the norm in other areas of care. This, she said, might help explain the difficulties Silvia and I encountered with my father’s doctor.