How We Die (18 page)
Authors: Sherwin B Nuland
And yet, she herself bore it and never questioned that bearing it was what she would do. She saw her children often, and she sat with other wives and husbands of patients whose sorrow she shared. “We’d sit and cry together. When I got a little stronger, I’d try to help them. You get so that you block certain things out—that’s what I taught myself to do.” She learned that Alzheimer’s, though usually a disease of later life, can strike younger people as well. There was a man in his forties in the home. Only his eyes moved.
Toward the end, Phil began to lose weight rapidly. During the last year of his life, the skin seemed to hang from his face; Janet had to buy him new shoes because his feet shrank by two sizes as he became wizened and smaller, and much, much older-looking. This once robustly healthy man, who throughout his adult life had worn well-tailored size 48 suits, fell to a weight of 139 pounds.
And through it all, he never stopped walking. He walked obsessively, constantly, every moment the ward personnel let him. Janet tried to keep up with his rapid pace but would quickly become tired to the point of collapse—and still he continued. Even when he was so weak that he could barely stand, somehow he found the strength to walk back and forth, back and forth, around the confines of the ward. When too exhausted to continue, he would stagger along until Janet and the nurse grabbed his shoulders and eased him down into a chair, too winded and too weak to go farther.
Once seated, the frail body bent sideways because Phil hadn’t the strength to hold himself up any longer. The nurses had to tie him in lest he topple to the floor. And even then, his feet never stopped moving. Sitting there, unaware of the world around him, trussed into a chair by a sash around his waist, out of breath from the effects of his ceaseless effort, he would nevertheless keep moving his feet in a pathetic imitation of rapid walking. He was driven to do it, as if pursuing something he had lost forever. Or perhaps that wasn’t it at all. Perhaps something inside him knew the fate that awaits those who are in the terminal phases of Alzheimer’s disease, and he was running from it.
During his final month of life, Phil had to be tied into bed at night to prevent him from getting up to resume his incessant walking. On the evening of January 29, 1990, in the sixth year of his illness, puffing breathlessly from the effort of one of his fast, forced marches, he stumbled to his chair and fell to the ground, pulseless. When the paramedics arrived a few minutes later, they tried CPR to no avail and sped him to the hospital, which was right next door. The emergency room doctor pronounced him dead of ventricular fibrillation leading to cardiac arrest, then phoned Janet. She had gone home less than ten minutes before Phil began that final walk to his mortality.
And when he died, I was glad. I know it sounds terrible to say that, but I was happy he was relieved of that degrading sickness. I knew he never suffered, and I knew he had no idea what was happening to him, and I was grateful for that. It was a blessing—it was the only thing that kept me going, all of those months and years. But it was a horrible thing to watch happening to someone I loved so much. You know, when I went to the hospital after Phil died, they asked me if I wanted to see his body. I said no. My friend, who is a devout Catholic, had gone with me, and she couldn’t understand my refusal. But I didn’t want to remember that face dead. You have to understand—it wasn’t for me that I felt that way. It was for him.
And so ended the destruction of Phil Whiting. Even in the midst of his heartbreaking descent into cerebral atrophy, his family was spared the final scene of withering decay that so often plays itself out on the unknowing victim’s body. Not uncommonly, late-stage patients already uncommunicative become immobile, their bodies assuming grotesque positions as they stiffen or slump toward death. But long before the end, the problems of basic hour-to-hour supervision become insurmountable for most families. With behavior unpredictable, the patient’s wandering and destructiveness must be prevented or at least dealt with on those occasions when, alertness notwithstanding, caregivers are eluded and damage is wrought. It is for good reason that the authors of
The 36-Hour Day
chose that title. A momentary relaxation of vigilance may result in physical harm to the patient and others, or a conflict with neighbors that forces action long before a family is prepared for it. Energies dissipate, patience wanes, and even the most determined husband or wife soon finds him or herself taxed beyond seeming endurance. Even the routine aspects of nursing care take on a Sisyphean impossibility that defies the best efforts of the most skilled and dedicated of attendants.
The 36-Hour Day
chose that title. A momentary relaxation of vigilance may result in physical harm to the patient and others, or a conflict with neighbors that forces action long before a family is prepared for it. Energies dissipate, patience wanes, and even the most determined husband or wife soon finds him or herself taxed beyond seeming endurance. Even the routine aspects of nursing care take on a Sisyphean impossibility that defies the best efforts of the most skilled and dedicated of attendants.
It is not a simple thing to find the kind of facility to which one can, with a complete sense of security, entrust someone who has meant so much in one’s own life. Although there are many reasons for inadequacy, perhaps the single most important one is a stark statistic: Alzheimer’s disease strikes more than 11 percent of the U.S. population over sixty-five. The total number of Americans affected, including those patients below sixty-five, is estimated at around 4 million. The strain on resources will continue and grow. Projections indicate that by the year 2030, the population of Americans who live beyond sixty-five will reach 60 million or more. With direct and indirect cost of dementias of all sorts having already reached an estimated $40 billion annually (and with most of that involving people with Alzheimer’s), the magnitude of the problem is ever more staggering. Is it any wonder that a worried family trying to do the best that it can finds itself so often overwhelmed and in need of guidance?
Fortunately, there do exist, albeit still in insufficient numbers, appropriate long-term care facilities in our country, of the sort Janet Whiting was able to find. Some of them even have what are called respite programs, which provide for a short-term admission in order to allow an exhausted caretaker to have a few days or weeks of relief. There exist a few hospice programs, as well. Whatever the degree of a family’s reluctance, long-term admission is often the only way by which some measure of tranquillity can be restored.
As more time passes, patients will gradually slide toward complete dependency. Those who do not succumb to such an intercurrent process as stroke or myocardial infarction will very likely lapse into a condition that has been termed, inhumanly and yet very descriptively, the vegetative state. At that point, all higher brain functions have been lost. Even before then, some patients are unable to chew, walk, or even swallow their own secretions. Attempts to feed may result in spells of coughing and choking that are frightening to watch, especially when the observer feels at fault. This is the period when hard decisions are faced by families, having to do with the insertion of feeding tubes and the vigor with which medical measures should be taken to fend off those natural processes that descend like jackals—or perhaps like friends—on debilitated people.
If it is decided not to tube-feed, death by starvation may be a merciful choice for people who are unconscious or otherwise without sensation of the process. Starvation may well seem preferable to the alternatives, the paralysis and the malnutrition that almost inevitably overtake even the most scrupulously fed of intubated terminally ill people. Incontinence, immobility, and low levels of blood protein make it almost impossible to avoid bedsores, which can become ghastly to look at as they deepen to the point of exposing muscle, tendon, and even bone, coated in layers of foul, dying tissue and pus. When that happens, the psychological trauma on the family is mitigated only a little by the knowledge that its victim is unaware of it.
Incontinence, immobility, and the need to catheterize lead to urinary-tract infections. The inability to acknowledge or swallow secretions causes aspiration of mucus and increases the likelihood of pneumonia. Here again, difficult treatment decisions must be made, involving not only individual conscience but religious beliefs, societal norms, and medical ethics. Sometimes, the best course may be not to make those decisions and to let grim nature have its way.
Once embarked upon, that course may sometimes be very rapid. The great majority of people in an Alzheimer’s vegetative state will die of some sort of infection, whether it arises in the urinary tract, in the lungs, or in the fetid, bacteria-choked swamp of a bedsore. In the feverish process that ensues, called septicemia, bacteria rush into the bloodstream, rapidly causing shock, cardiac arrhythmias, clotting abnormalities, kidney and liver failure, and death.
All along the way, family members have been experiencing feelings of ambivalence, helplessness, and crisis. They fear what they are seeing, as well as what they have yet to see. No matter how often they are reminded, many people persist in believing they are permitting conscious suffering. And yet, it is always so hard to let go. Such legal instruments as living wills and durable power of attorney may function as so-called advance directives, but all too often they do not exist; a grieving wife or husband, or children already struggling with family problems of their own, are adrift in a sea of conflicting emotions. The difficulty of deciding is compounded by the difficulty of living with what has been decided.
Alzheimer’s is one of those cataclysms that seems designed specifically to test the human spirit. The nobility and loyalty of a Janet Whiting are not unique, may even be, to a greater or lesser extent, the norm. By so much is Janet’s behavior not exceptional, in fact, that those who provide the professional help come almost to expect that families will rarely question their own roles in the caretaking process. The cost, of course, is considerable. In terms of emotional damage, of neglect of personal goals and responsibilities, of disturbed relationships, and obviously of financial resources, the toll is unbearably high. Few tragedies are more expensive.
It often seems as though the families of Alzheimer’s patients are sidetracked from the broad sunlit avenues of ongoing life, remaining trapped for years each in its own excruciating cul-de-sac. The only rescue comes with the death of a person they love. And even then, the memories and the dreadful toll drag on, and from these the release can only be partial. A life that has been well lived and a shared sense of happiness and accomplishment are ever after seen through the smudged glass of its last few years. For the survivors, the concourse of existence has forever become less bright and less direct.
It is probably a universal teaching of all cultures that putting a name to a demon helps to decrease its fearsomeness. I sometimes wonder whether the real, perhaps culturally subconscious, reason that medical pioneers have always sought to identify and classify specific diseases is less to understand than to beard them. Confrontation, somehow, is safer once we have set a label on a thing, as if the very process makes the vicious beast sit still for a while and appear susceptible to taming; it puts under some element of control what has previously been a wildness of unrestrained terror. When we give sickness a name, we civilize it—we make it play the game by our own rules.
Naming a disease is the first step in organizing against it. Not only is it the scientific community that forms the modern-day equivalent of military circles and squares but the community of patients, families, and lay volunteers, as well. Since the middle third of this century, patients and relatives have shared their problems, and sometimes their expenses, with such groups as the National Foundation for Infantile Paralysis, The American Cancer Society, and the American Diabetes Association. People afflicted with these scourges, and those who care about them, need no longer be alone.
In the case of Alzheimer’s disease, it is rarely the patient who recognizes the need for company in the journey through travail. But there is probably no disability of our time in which the presence of support groups can help so decisively to ensure the emotional survival of the closest witnesses to the disintegration. In the United States, there are now almost two hundred chapters and more than a thousand support groups under the umbrella of the Alzheimer’s Disease and Related Disorders Association (ADRDA), and similar organizations exist in other countries. They function not only to provide help but also as advocates of increased funding for research and clinical improvements. There is strength in numbers, even when the numbers are only one or two understanding people who can soften the anguish by the simple act of listening.
That anguish consists of many parts, and some of them cannot be dealt with unless with a sympathetic and knowing listener. Is it possible that the burden of this disease does not become a source of resentment and sometimes repugnance to everyone it drags along in its loathsome wake? Can anyone maim a great piece of his or her life without seething? Is there a single person who can forbearingly watch as the object of his or her brightest love involutes into incomprehension and decay?
Each family needs help to understand the viciousness of the attack not only on the patient himself but on those who stand with him. Not that help of any sort should be expected to provide release from the torment—it can only make the suffering understandable and offer some respite from the ordeal. The very knowledge that a family’s feelings of rage and frustration are universal and unavoidable, the assurance that understanding ears will listen and understanding hearts will share—these are the realizations that can lift away the loneliness and unjustified feelings of guilt and remorse that magnify the deluge of despair visited on each participant by the spiritual subjugation of Alzheimer’s.
The road back from isolation starts with the pronouncement of the words that give the alarming symptoms a name. That very act sets in motion the process by which family members can unite their defenses with the millions of others who walk alongside them. The name of this disease did not exist one hundred years ago, although aspects of the process that would be associated with it had been observed and described for centuries as an as-yet-unspecified part of that vast panorama called senility.
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