How We Die (17 page)
Authors: Sherwin B Nuland
And yet, as though taking action might finally confirm the inevitable, Janet still hesitated to seek medical verification. Perhaps she kept hoping that Phil was simply going through some passing emotional upheaval or that his bouts of inappropriate behavior would not progress, or might even disappear with the passage of healing time. The episodes were, after all, not only brief but unremembered. As soon as the moment passed, Phil seemed unaware of what he had said or done. Thinking back on it even now, Janet doesn’t recall the many little lies she must have told herself both to calm the mounting anxiety that was constantly with her and to delay the official pronouncement of hopelessness.
But finally, it became impossible to continue averting her thoughts from the disintegration of Phil’s mind. Increasingly often, he would awaken in the middle of the night, shouting at Janet to get out of their bed. “What are you doing here?” he would exclaim. “Since when does a sister sleep with her brother?” Each time, she would patiently do as he demanded and leave him thrashing about in his anger while she lay awake the rest of the night on the living room couch. He would soon fall back into peaceful sleep, then arise in the morning with no recollection of his outburst.
The point came when the moment could no longer be postponed. One day, about two years after the episode with the Warners, Janet used some now-forgotten subterfuge to convince Phil to visit their physician, having finally convinced
herself
. After taking a careful history and doing the physical, the doctor came out of the examining room and pronounced the name of Phil’s sickness. By then, Janet had become somewhat familiar with the characteristics of Alzheimer’s disease, but even her anticipation of the diagnosis did not lessen the shock or the sense of doomed finality when she heard the words. She and the doctor decided not to tell Phil. It would not have made any difference if they had told him—he was already by then beyond anything but a temporary comprehension of the implications of such a diagnosis, and would never have retained any attempt to describe it. Within minutes of hearing them out, he would have been just as unaware of his mental state as though they had never spoken.
herself
. After taking a careful history and doing the physical, the doctor came out of the examining room and pronounced the name of Phil’s sickness. By then, Janet had become somewhat familiar with the characteristics of Alzheimer’s disease, but even her anticipation of the diagnosis did not lessen the shock or the sense of doomed finality when she heard the words. She and the doctor decided not to tell Phil. It would not have made any difference if they had told him—he was already by then beyond anything but a temporary comprehension of the implications of such a diagnosis, and would never have retained any attempt to describe it. Within minutes of hearing them out, he would have been just as unaware of his mental state as though they had never spoken.
Some months later, in fact, Janet did tell him. As his bouts of irrationality became more frequent and his lapses of memory more prolonged, she was sometimes unable to control her impatience, and always felt an immediate flush of shame when she treated this good man with a hasty outburst of anger or even a sharp word. Once, after a particularly vexing exchange, she snapped at him, “Don’t you see what’s wrong with you? Don’t you know you have Alzheimer’s?” In describing that outburst, she told me, “I felt awful the second it was out of my mouth.” But her remorse was unnecessary. It was as though she had remarked on the weather. Phil was no more aware of his plight than he had been before she spoke out. As far as he was concerned, nothing untoward had been happening to him—he could not even remember his own forgetfulness. To any casual acquaintance who had a chance encounter with good old Phil Whiting, he seemed just as well as ever, and that is exactly what he thought he was.
Janet did what almost everyone in her anguished situation does. She determined to take care of Phil herself for as long as she could, and she began to look for books to help her understand the state of mind of people with Alzheimer’s disease. There were some good ones, but the best of the lot was the aptly named
The 36-Hour Day
. In it she found statements that confirmed what the doctor had told her days earlier, such as: “Typically the disease is slowly but relentlessly progressive,” and “Alzheimer’s disease usually leads to death in about seven to ten years, but it can progress more quickly (three to four years) or more slowly (as much as fifteen years).” As she wondered whether she was not simply witnessing the ravages of ordinary senility, Janet came across this sentence: “Dementia is not the natural result of aging.”
The 36-Hour Day
. In it she found statements that confirmed what the doctor had told her days earlier, such as: “Typically the disease is slowly but relentlessly progressive,” and “Alzheimer’s disease usually leads to death in about seven to ten years, but it can progress more quickly (three to four years) or more slowly (as much as fifteen years).” As she wondered whether she was not simply witnessing the ravages of ordinary senility, Janet came across this sentence: “Dementia is not the natural result of aging.”
And so Janet soon came to know this was a real disease she would have to confront, and that it carried with it the inexorable certainty of deterioration and death.
The 36-Hour Day
and the other books taught her about the physical and emotional changes she might expect in Phil, as well as giving her important hints about caring not only for him but also for herself during the years of what were certain to be stress and torment. But in the end, she found that “They’re just words—it doesn’t really penetrate. It’s what’s in your heart that makes you able to do this.” No matter the extent of her reading, and no matter how she tried to prepare herself for the possibility that, as so directly put in
The 36-Hour Day
, “Sometimes people with dementing illnesses . . . may slam things around [or] hit you,” she could never have anticipated the series of events that took matters out of her hands one March evening in 1987, after a year of her devoted care. That was the evening “just ten days before our fiftieth wedding anniversary” when “everything came to a head.” This is how she described it to me five years later:
The 36-Hour Day
and the other books taught her about the physical and emotional changes she might expect in Phil, as well as giving her important hints about caring not only for him but also for herself during the years of what were certain to be stress and torment. But in the end, she found that “They’re just words—it doesn’t really penetrate. It’s what’s in your heart that makes you able to do this.” No matter the extent of her reading, and no matter how she tried to prepare herself for the possibility that, as so directly put in
The 36-Hour Day
, “Sometimes people with dementing illnesses . . . may slam things around [or] hit you,” she could never have anticipated the series of events that took matters out of her hands one March evening in 1987, after a year of her devoted care. That was the evening “just ten days before our fiftieth wedding anniversary” when “everything came to a head.” This is how she described it to me five years later:
He didn’t know who I was—he thought I had broken into the house and that I was stealing Janet’s things. Then he began to push me around and throw different objects at me. He broke some of my antiques because he didn’t know what they were. Then he said he was going to call Nancy and tell her what was going on. Well, he did call her, and she knew immediately what was happening. She told him, “Just put that woman on,” so he pushed the phone at me and said, “Here—my daughter’ll talk to you—she’ll tell you to get out!” When I took the receiver, Nancy said, “Mother, leave the house right away. I’m calling the police.” As I hung up, Phil grabbed the phone and he also called the local precinct.Foolishly, I stayed in the house, and he began throwing me around. So I called the police, too. Imagine—three police cars showed up and I was so embarrassed! The policemen came in and I tried to tell them what was going on, but Phil said, “She’s not my wife. Come with me, and I’ll show you a picture of my wife.” With that, he took one of the policemen into the bedroom to show him our wedding picture. Of course, when the cop saw the picture, he said, “This bride looks like your wife, standing right here,” and Phil insisted, “She’s
not
my wife!”Meanwhile, our neighbor came in and he recognized her. When she saw what was taking place, she spoke to him very gently: “Phil, you know I love you and I wouldn’t lie to you. This woman is Janet—turn around and look.” So he did just as he was told. He turned around and looked at me as if he was seeing me for the first time. “Janet,” he said, “Thank God you’re here! Somebody’s been in here trying to steal your clothes.” And that was it.
One of the officers coaxed Phil into his car. Phil’s “They’ll think you’re arresting me” was fended off with, “Oh no, they’ll just think we’re taking a friend for a ride.” Phil seemed satisfied with such a simple explanation. He was taken to a nearby hospital, where he stayed until a nursing home placement could be made.
Nancy flew down to be with her mother, and they visited the hospital every day. They were at first surprised at the ease with which Phil fell into the ward routine, but soon realized that he didn’t actually know where he was. “He would introduce us to the personnel at the ward desk and tell us they were his secretaries and that the hospital was a hotel he was managing.” He usually recognized Janet, but had to be told each time that the younger woman was his daughter. In time, he would come to think Janet was his girlfriend, and finally he would have no idea who she was.
Within a week, a good nursing home was found, and Phil was transferred to it. A few days later, Janet spent their fiftieth wedding anniversary there, at the side of a man who sometimes knew why she had come and sometimes didn’t. To the true condition of his demented mind, and to the tragedy that had overtaken his family, he was oblivious.
During the next two and a half years, Janet spent most of almost every day with Phil, except for brief periods of respite insisted upon by her children. They could sense her chronic exhaustion and they knew when her ordeal needed to be interrupted. Even her moments of resentment did not escape their awareness, but they understood those, too, and they forgave her more willingly than she forgave herself. No matter the devotion she brought to her ministrations, her lover and best friend had abandoned her to descend into an unknowing slough.
Janet became a volunteer in the physical therapy department, and for a brief time she took part in the activities of a support group for families of Alzheimer’s patients. But support groups can only shoulder so much of one’s own burden. Within a short time, Janet knew that each victim of dementia inflicts his own unique form of pain on those who love him and that it takes a unique form of response to sustain every distinct afflicted individual. The three children found it impossible to be witness to the destruction of their adored father, and it was a good thing that this was so. They succored the soul of their mother, seeing to it that she was fed the emotional sustenance to carry out the tasks they knew she must undertake.
Joey, the youngest, somehow gathered up the forces necessary to visit his father twice during his long confinement, but he was neither recognized nor remembered. His visits caused him unbearable distress and helped his father not at all. What helped his mother—and this was the real help that was most needed—was the certainty of the support that comes not from groups and not from books but from the sustained devotion of family and those few friends whose loyalty finds its origins in love.
“It’s what’s in your heart that makes you able to do this.” What was in Janet’s heart was to do for Phil what only she—no nurse, no doctor, no social worker—could do. Whether he knew her or not—and in time he did not—something almost irretrievable within him must have retained the dim, far-away comprehension that she was security and certainty and predictability in otherwise uncontrollable, meaningless surroundings. “When he saw me coming, he would wave, but he didn’t know who I was. He only knew I was someone who came to see him, who sat with him.”
At first, the shock of watching Phil’s steady deterioration was horrifying anew each day. Somehow, Janet could maintain her equanimity while she was actually with him, though not always: “At times that first year in the home, I’d go to pieces. And then they would take me into a room and talk to me, and talk to me, until I felt a little better able to cope. But every evening I’d go home and have hysterics.” Gradually, she became just enough inured to Phil’s steady worsening, but she recognized how difficult it might be for others who cared about him. And she also wanted to protect him, wanted him to be remembered as he had been, a man of vibrant goodwill who carried himself not only with dignity but with a sense of style that was uniquely his own. “I wouldn’t let our friends visit the home—I didn’t want them to see him like that.”
In the home, Phil’s course was just as the books had foretold: “slowly but relentlessly progressive.” At first, he retained some of his gregarious good nature, apparently in the belief that he was host to a homeful of unwell people for whose welfare he was responsible. Fully dressed, he would go from patient to patient, inquiring with proprietary benevolence of each one, “And how are you today? I hope you’re feeling well.” Sometimes, if Janet or the nurses were distracted for a brief interval, he would push a wheelchair-bound man or woman right out the front entrance of the building, to go for a stroll. He would then have to be apprehended somewhere on the local streets, cheerfully rolling his complaisant and unknowing charge through the turmoil of passing traffic and pedestrians.
During the middle phases of his illness, Phil had developed a marked incongruity between the thoughts he seemed to be trying to express and the words that actually came out. Although this kind of thing may sometimes happen to stroke victims, they are usually aware of their inability to come out with the right words. Phil had no idea of his disability. Janet remembers one particular occasion when, while they were walking together, he suddenly shot out at her, “The trains are running late—do something!” When she replied that she didn’t know where the trains were, he retorted in anger, “What’s the matter with your eyes, can’t you see?” and pointed down at his untied shoelaces. Suddenly, she understood. “He just wanted me to tie his laces, but he expressed it in this way. He knew what he wanted to say, but he couldn’t get the right words, and didn’t even realize it.”
After he had been in the home a while, Phil began to gain weight, a total finally of forty-five extra pounds on his already-generous proportions. But then he stopped eating, forgot, in fact, how to chew. Janet would have to put her finger in his mouth to extract bits of food lest he choke on them. By that time, he no longer remembered his name. Although his ability to chew returned, he never again knew who he was. Until he stopped talking altogether, he would every once in a while look at Janet, for just a brief moment, with the old gentleness. Choosing exactly the words he had used so many countless times during their half century of life together, he would murmur, with all of the familiar softness and devotion of days long gone, “I love you—you’re beautiful, and I love you.” As soon as the words were uttered, he always crossed back to the other side, the side of oblivion.
Finally, all contact and all control were lost. Phil became totally incontinent but was quite unaware of it. Although fully conscious, he simply had no idea of what had happened. Urine soaking his clothes and smeared sometimes with his feces, he would have to be undressed to clean off the filth that profaned the pittance of humanness still left to him. “And this was a man,” said Janet, “who had always been so proud of his appearance, and so dignified. You might even say he was a prude. To see Phil standing there nude while the aides were washing him, with him not having any idea of what was going on . . .” And then, her eyes reflecting the first moist gleam of beginning tears, she said, “It’s such a degrading sickness! If there was any way he could have known what was happening to him, he wouldn’t have wanted to live. He was too proud to have been able to tolerate it, and I’m glad he never knew. It was more than anyone should have to bear.”
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