How We Die_ Reflections On Life's Final Chapter Part 3

An octogenarian who dies of myocardial infarction is not simply a weather-beaten senior citizen with heart disease-he is the victim of an insidious progression that involves all of him, and that progression is called aging. The infarction is only one of its manifestations, which in his case has beaten out the rest, though any of the others may be ready to snap him up should some bright young doctor manage to rescue him in a cardiac intensive care unit. Seven of Walker Smith's oldsters officially died of myocardial infarction; four others had strokes as part of their terminus; eight died of infection, including three who disappeared into eternity arm in arm with the old man's friend, pneumonia; there were three far-advanced cancers in the group, although the final episode for one was pneumonia and for another was stroke. The single most striking observation was also the one most expected: Every one of these twenty-three people had advanced atheromatous disease in the vessels of the heart or the brain, and almost all had it in both, even if they exhibited no symptoms that required treatment until the terminal event. One or the other of these vital engines was close to quits in every one of the old persons studied.

Another finding that elicited no surprise was the frequency of nameable disease in the other organs of any individual, which played no part in the patient's death. In the pathologists' reports, such diseases are designated "incidental." Thus, in addition to the three patients whose malignancies killed them, another three were found to harbor unsuspected "incidental" cancers-in the lung, prostate, and breast; two women and one man had the ballooning of the aorta or other large abdominal vessels called an aneurysm, caused by atherosclerotic weakening; eleven of the twenty whose brains were microscopically studied were found to have old infarcts, even though only one had a known history of stroke; fourteen were found to have major atherosclerotic changes in the arteries of the kidneys; several had active urinary-tract infections; and a man who died of extensive stomach cancer had gangrene of his leg.

It is well known that very old people die of diseases they might easily have conquered had they been somewhat younger, but the extent to which this happens in the case of perfectly straightforward sickness is surprising: One of the people in our study died of a ruptured appendix, two of infections following gallbladder or bile-duct surgery, one from the complications of a perforated peptic ulcer, and another of diverticulitis. Every one of these diseases is an infection. Infection is exceeded only by atherosclerosis as the most frequent cause of death in people eighty-five or older. Two additional patients died of hemorrhage-one in a duodenal ulcer and one as the result of a fractured pelvis. Having been in the midst of a very active surgical practice during the period when these autopsies were done, I can attest to the probability that none of the seven individuals being treated in this university hospital would have succ.u.mbed had they been in their mid-fifties.

Only two of Walker Smith's twenty-three patients escaped significant destruction of brain tissue. One of them proved, in fact, to be remarkably resistant in general to atherosclerosis, at least of the brain and heart. The degree of calcification in this eighty-nine-year-old man's coronary arteries was only moderate and he had sustained "less cerebral atrophy than might be expected in a brain of this age," to quote the autopsy report. But he had taken it in the kidneys, which were not only the site of a chronic infection (called pyelonephritis) that constantly seeded his urinary tract with intestinal bacteria but were also victimized by destruction of their tiny arterial branches and filtering units, as well as by marked scarring. Yet it was not his chronic kidney disease that did this fellow in-he succ.u.mbed to a malignancy called multiple myeloma, complicated by pneumonia. And so, like every other one of these twenty-three very old men and women, this fellow was carried off by several of the seven hors.e.m.e.n.

The other escapee from the ravages of cerebral senescence was an eighty-seven-year-old professor of Latin and former Yale dean. Seemingly spry and well (and without clinical evidence of heart disease), he was discovered at autopsy to have been actually within a hair of myocardial infarction, with the interesting coupling of "severe [atherosclerotic] involvement of the coronary arteries and minimal involvement of the cerebral vessels." His coronaries, in fact, were described as "pipe-stem," with one of them being completely occluded. The heart had undergone a brownish discoloration due to atrophy; the kidneys, too, looked their age. The professor had been awakened from sleep one cold December night by the sudden onset of severe abdominal pain. The diagnosis of perforated peptic ulcer was made in the emergency room and confirmed at autopsy four days later, after his tired immune system and barely nourished heart proved insufficient to protect him from the peritonitis that ensued. And so the professor's relatively unscathed brain was of no avail to him when his life was challenged elsewhere.

The lesson taught by the twenty-three case histories is simply confirmation of the lesson that daily experience teaches. Whether it is the anarchy of disordered biochemistry or the direct result of its opposite-a carefully orchestrated genetic ride to death-we die of old age because we have been worn and torn and programmed to cave in. The very old do not succ.u.mb to disease-they implode their way into eternity.

Since there are so few pathways to an old man's grave, and since there is such an intermingling of their basic paving stones, it is reasonable to wonder why the development of one of them brings with it such a high risk of harboring the others. Is it perhaps that all of these pathologies may share a common cause that becomes more active as we grow older? This consideration has, of course, been incorporated into the various theories of aging. One of the theories, for example, proposes that the process by which we develop and grow is part of a metabolic pattern controlled by an inner part of the brain called the hypothalamus, which can regulate hormone activity. This mechanism, beginning when life itself begins, allows the body to adapt to its external environment. The progression of these adaptations necessarily leads, as though following a schedule, to development, maturity, and then aging. If there is truth to this neuroendocrine thesis of aging, the occurrence of the diseases of the elderly is the price an organism pays for its lifelong ability to adapt to its surroundings and to changes occurring in its own tissues.

The entire process unfolds as though part of a master plan, a grand strategy that oversees an organism's development from early embryonic stages to the instant of mortality, or at least to the anarchy that immediately precedes it. In this, the theorists of physiology are at one with the bereavement counselors who point out the value of the maxim that death is part of life.

Considerations of this sort echo, albeit in a more somber vein, a few sentences from a pa.s.sage in the appendix of my volume of Thomas Browne. In a book ent.i.tled Merchant and Friar Merchant and Friar, the nineteenth century historian Sir A. Palgrave wrote: "Coeval with the first pulsation, when the fibres quiver, and the organs quicken into vitality, is the germ of death. Before our members are fas.h.i.+oned, is the narrow grave dug, in which they are to be entombed." Dying begins with the first act of life.

These are possibilities that give rise to speculations of major significance in decision-making about our own lives. When an elderly man is offered the possibility of cancer palliation or even cure, providing that he is willing to endure debilitating chemotherapy or radical surgery, what should be his response? Will he suffer through the treatment, only to die of his ongoing cerebrovascular atherosclerosis the following year? After all, the cerebrovascular disease is likely the result of the same process that so decreased his immunity to malignant growth that he developed the cancer that is trying to kill him. But then again, different manifestations of the aging process proceed at different rates, so it may be somewhat longer than he antic.i.p.ates before his stroke exerts its claim. Such possible eventualities can be estimated only by evaluating the present state of his nonmalignant process, such as the degree of his hypertension and the status of his heart disease. These are the kinds of considerations that should go into every clinical decision involving older people, and wise physicians have always made careful use of them. Wise patients should do the same.

Whether the result of wear, tear, and exhaustion of resources or whether genetically programmed, all life has a finite span and each species has its own particular longevity. For human beings, this would appear to be approximately 100 to 110 years. This means that even were it possible to prevent or cure every disease that carries people off before the ravages of senescence do, virtually no one would live beyond a century or a bit more. Although the psalmist sings that "The days of our years are three score and ten," it seems not to be remembered that Isaiah was a better prophet, or at least a better observer, proclaiming to all who would but listen that "the child shall die an hundred years old." He is here speaking of the New Jerusalem, where there will presumably be no infant mortality and no disease: "There shall be no more thence an infant of days, nor an old man that hath not filled his days." Were we to heed Isaiah's warning and eschew every bit of McCarty-like behavior, solve the problems of poverty, and love our neighbor, who knows how close we might come to making a prophet of the prophet? Medical science and improved living conditions have already brought us a long way. Western society has in less than a hundred years more than doubled a child's life expectancy at birth. We have changed the face of death. In the modern demographic pattern, the great majority of us now reach at least the first decade of old age, and we are fated to die of one of its ravages.

Though biomedical science has vastly increased mankind's average average life expectancy, the life expectancy, the maximum maximum has not changed in veriflable recorded history. In developed countries, only one in ten thousand people lives beyond the age of one hundred. Whenever it has been possible to examine critically the claims of supposed record-breakers, they have not been substantiated. The highest age thus far solidly confirmed is 114. Interestingly, that figure comes from j.a.pan, whose citizens live longer than those of any other country, with an average life expectancy of 82.5 years for women and 76.2 for men. The comparable figures for white Americans are 78.6 and 71.6, respectively. Even the home-cultured yogurt of the Caucasus cannot vanquish nature. has not changed in veriflable recorded history. In developed countries, only one in ten thousand people lives beyond the age of one hundred. Whenever it has been possible to examine critically the claims of supposed record-breakers, they have not been substantiated. The highest age thus far solidly confirmed is 114. Interestingly, that figure comes from j.a.pan, whose citizens live longer than those of any other country, with an average life expectancy of 82.5 years for women and 76.2 for men. The comparable figures for white Americans are 78.6 and 71.6, respectively. Even the home-cultured yogurt of the Caucasus cannot vanquish nature.

There is plenty of other evidence to support the thesis of a species-determined limit to life span. Among the most obvious clues is the great variability in the maximum attainable age between differing animal groups, existing coincident with the highly specific longevity of each individual species. Another suggestive biological observation is the average number of offspring of any animal form, which proves to be inversely related to the form's maximum life span. An animal like man, needing not only a considerable gestation period but an inordinately long time before its young are biologically independent, requires a prolonged reproductive life span to ensure survival of the species, and that is exactly what we have been given. Humans are the longest-living mammals.

If the processes of aging are, within relatively narrow limits, resistant to any but certain well-known changes in personal habits, why do we persist in heretofore-vain attempts to live beyond the possible? Why cannot we reconcile ourselves to the immutable pattern of nature? Although recent decades have seen our concern with our bodies and their longevity reach a fever pitch unknown to previous generations, these kinds of hopeful seekings have always motivated at least some members of those societies that have left records of their existence. As early as the days of ancient Egypt, there is evidence of attempts by elders to prolong their lives-the Ebers Papyrus of more than 3,500 years ago contains a prescription for restoring an old man to youth.

Even as science was beginning to light the dawn of a new kind of medicine in the seventeenth century, Hermann Boerhaave, the leading physician of his time, recommended that an aging patient seek to regain his health by sleeping between two young virgins, recalling King David's futile attempt to do the same kind of thing. History has taken us through the pastoral period of mother's milk and the pseudoscience of monkey glands to rejuvenate flagging juices, and now we are in what might be called the vitamin era, both C and E. Never yet has anyone succeeded in borrowing any time. Most recently, a few researchers have been telling us that growth hormone may hold the promise of increasing lean body ma.s.s and bone density, and some among us insist that it will therefore also make people younger. We now hear early rumblings that so-called gene therapy is the answer, whereby cutting and splicing DNA will add decades or more to the maximum life span. In vain do the Sober scientists try to convince the clamorers that it just ain't true, and it shouldn't be. The lesson is never learned-there will always be those who persist in seeking the Fountain of Youth, or at least delaying what is irrevocably ordained.

There is a vanity in all of this, and it demeans us. At the very least, it brings us no honor. Far from being irreplaceable, we should should be replaced. Fantasies of staying the hand of mortality are incompatible with the best interests of our species and the continuity of humankind's progress. More directly, they are incompatible with the best interests of our very own children. Tennyson says it clearly: "Old men must die; or the world would grow moldy, would only breed the past again." be replaced. Fantasies of staying the hand of mortality are incompatible with the best interests of our species and the continuity of humankind's progress. More directly, they are incompatible with the best interests of our very own children. Tennyson says it clearly: "Old men must die; or the world would grow moldy, would only breed the past again."

It is through the eyes of youth that everything is constantly being seen anew and rediscovered with the advantage of knowing what has gone before; it is youth that is not mired in the old ways of approaching the challenges of this imperfect world. Each new generation yearns to prove itself-and, in proving itself, to accomplish great things for humanity. Among living creatures, to die and leave the stage is the way of nature-old age is the preparation for departure, the gradual easing out of life that makes its ending more palatable not only for the elderly but for those also to whom they leave the world in trust.

I am not arguing here against an old age that is active and rewarding. I do not advocate going gentle into that enveloping night which is premature senility. Until it becomes impossible, vigorous exercise of body and mind magnifies each living moment and prevents the separation that makes too many of us become older than we are. I speak only of the useless vanity that lies in attempts to fend off the certainties that are necessary ingredients of the human condition. Persistence can only break the hearts of those we love and of ourselves as well, not to mention the purse of society that should be spent for the care of others who have not yet lived their allotted time.

When it is accepted that there are clearly defined limits to life, then life will be seen to have a symmetry as well. There is a frame-work of living into which all pleasures and accomplishments fit-and pain, too. Those who would live beyond their nature-given span lose their framework, and with it lose a proper sense of relations.h.i.+p to those who are younger, gaining only the resentment of youth for encroaching on its careers and resources. The fact that there is a limited right time to do the rewarding things in our lives is what creates the urgency to do them. Otherwise, we might stagnate in procrastination. The very fact that at our backs, as the poet cautions his coy mistress, we "always hear / Time's winged chariot hurrying near" enhances the world and makes the time priceless.

The originator of the literary form we call the essay, the sixteenth-century Frenchman Michel de Montaigne, was a social philosopher who viewed mankind through the scrutinizing lens of unadorned and unforgiving reality and heard its self-deceits with the ear of a skeptic. In his fifty-nine years, he gave much thought to death, and wrote of the necessity to accept each of its various forms as being equally natural: "Your death is a part of the order of the universe, 'tis a part of the life of the world... 'tis the condition of your creation." And in the same essay, ent.i.tled "To Study Philosophy Is to Learn to Die," he wrote, "Give place to others, as others have given place to you."

Montaigne believed, in that uncertain and violent era, that death is easiest for those who during their lives have given it most thought, as though always to be prepared for its imminence. Only in this way, he wrote, is it possible to die resigned and reconciled, "patiently and tranquilly," having experienced life more fully because of the constant awareness that it may soon come to an end. Out of this philosophy grew his admonition, "The utility of living consists not in the length of days, but in the use of time; a man may have lived long, and yet lived but a little."

V.

Alzheimer's Disease

VIRTUALLY EVERY DISEASE can be described in terms of cause and effect. The symptoms a patient presents to his doctor, and the physical findings elicited on examination, are the direct results of very specific pathological changes within cells, tissues, and organs, or of disorders in biochemical processes. Once these underlying alterations have been identified, they can be shown to have led inevitably to the observed clinical manifestations. It is the purpose of the diagnostic workup to find the cause, using its effects as clues. can be described in terms of cause and effect. The symptoms a patient presents to his doctor, and the physical findings elicited on examination, are the direct results of very specific pathological changes within cells, tissues, and organs, or of disorders in biochemical processes. Once these underlying alterations have been identified, they can be shown to have led inevitably to the observed clinical manifestations. It is the purpose of the diagnostic workup to find the cause, using its effects as clues.

For example: Atherosclerotic obstruction in the artery that nourishes a segment of heart muscle will cause angina or infarction, with the resultant symptoms of those conditions; a tumor that produces an oversupply of insulin drastically reduces levels of glucose in the blood, preventing proper brain nutrition and leading to coma; a virus that attacks the motor cells in the spinal cord causes paralysis of the muscle to which those cells send messages; a loop of gut becomes twisted around a strand of internal postoperative scar tissue, and the consequent intestinal obstruction produces distension, vomiting, dehydration, and chemical imbalances in the blood, which in turn can lead to cardiac arrhythmia; a ruptured appendix fills the abdominal cavity with pus and the resultant peritonitis floods the bloodstream with bacteria that cause high fevers, sepsis, and shock. The list of examples is endless, and is the stuff of medical textbooks.

The patient comes to the doctor with one or more signs or symptoms-angina, or coma, or paralyzed legs, or persistent vomiting and a swollen belly, or fever accompanied by abdominal pain-and the detective work begins. It is to the series of events that has led to the observable set of symptoms and other clinical findings that the physician refers when he uses the term pathophysiology pathophysiology.

Pathophysiology is the key to disease. To a physician, the word has connotations that convey both the philosophy and the aesthetic of poetry-not surprisingly, part of its Greek root, physiologia physiologia, has a philosophic and poetic meaning: "an inquiry into the nature of things." When pathos pathos-"suffering" or "disease"-is prefixed to it, we have a literal expression of the essence of the doctor's quest, which is to make inquiry into the nature of suffering and disease.

It becomes the doctor's job to identify the instigating cause of sickness by tracing back along the sequence until he has found the ultimate culprit-microbial or hormonal, chemical or mechanical, genetic or environmental, malignant or benign, congenital or newly acquired. The investigation is done by following the clues left in the identifiable damage done to the body by the perpetrator. The crime is thus reconstructed and a treatment plan devised that rids the patient of the influence of the instigator of the disease.

In a sense, then, every doctor is a pathophysiologist, an investigator who identifies the disease by tracing the origins of its symptoms. That having been done, appropriate therapy can be chosen. Whether the aim is to excise the pathology, destroy it with drugs or X ray, counteract it with antidotes, strengthen the organs it is attacking, kill its causative germs, or simply to hold it in check until the body's own defenses can overwhelm it, a plan of action must be organized against each disease if the patient is to stand any chance of overcoming it. When a physician engages in combat to struggle against his patient's mortality, his knowledge of cause and effect is the armory to which he turns to help him choose his weapons.

The result of this past century's biomedical research is that the pathophysiology of the great majority of diseases is well known, or at least known well enough so that effective treatment is available. But there remain some diseases in which the relations.h.i.+p between cause and effect has been less clearly delineated than we might hope, and a few of these diseases are among the greatest scourges of our time. The malady which these days is called "senile dementia of the Alzheimer type" not only falls into this category but carries the additional vexation that its primary cause has continued to elude scientists since the problem was first brought to medical attention in 1907.

The fundamental pathology of Alzheimer's disease is the progressive degeneration and loss of vast numbers of nerve cells in those portions of the brain's cortex that are a.s.sociated with the so-called higher functions, such as memory, learning, and judgment. The severity and nature of the patient's dementia at any given time are proportional to the number and location of cells that have been affected. The decrease in nerve-cell population is in itself sufficient to explain the memory loss and other cognitive disabilities, but there is another factor that seems to play a role as well-namely, a marked decrease in acetylcholine, the chemical used by these cells to transmit messages.

These are the basic elements of what is known about Alzheimer's disease, but they are far too few to provide a direct linkage between structural and chemical findings on the one hand and the specific manifestations presented at any given moment by the patient on the other. Many of the details of the pathophysiology of the disease still elude the most determined efforts of medical science to pin them down. The sequential features in the long lists of causes, effects, and treatments that appear in the foregoing paragraphs have no a.n.a.logy to the present state of our knowledge (or ignorance) of Alzheimer's. We know not a whit more about what might cure it than we do about what might cause it.

Consequently, in the course of describing how Alzheimer's disease kills its victims, it will not be possible to stop here and there during the narration of a downhill course to correlate specific symptoms with the stages of pathophysiology of which they are manifestations. Such explanatory digressions would be unsatisfactory and confusing. But there are some very interesting things it will will be possible to do, and I present them here in yet another list: It be possible to do, and I present them here in yet another list: It will will be possible to describe the fundamental pathological changes that occur in the brain, and some of the areas of study by which attempts are being made to elucidate them; it be possible to describe the fundamental pathological changes that occur in the brain, and some of the areas of study by which attempts are being made to elucidate them; it will will be possible to use the gradual historical development of our present knowledge of the illness in such a way that the often abstruse aspects of disordered brain function may be made comprehensible; it be possible to use the gradual historical development of our present knowledge of the illness in such a way that the often abstruse aspects of disordered brain function may be made comprehensible; it will will be possible to chronicle the emotional carnage visited on the families of victims; it be possible to chronicle the emotional carnage visited on the families of victims; it will will be possible to tell what happens to an afflicted person-and how he or she dies. be possible to tell what happens to an afflicted person-and how he or she dies.

"Everything came to a head just ten days before our fiftieth wedding anniversary." Janet Whiting was recalling the six tormented years of her husband's agonizing decline into the final stages of Alzheimer's disease. I have known Janet and her husband, Phil, since my boyhood. They were young and very attractive newlyweds the first time my family visited their apartment in the late 1930s; he was twenty-two and she was twenty. Compared with my immigrant parents, who were staidly ensconced in their forties, the Whitings appeared like a movie-star couple, a pair of juveniles not old enough to be doing anything in that recently furnished apartment but playing house.

Not that I doubted the reality of the excitement Janet and Phil very obviously felt about each other-what I doubted was the likelihood that a couple whose shared life was so joyous could really be married. I was sure they were just trying it out; I knew from personal observation that married people don't behave like this. If the Whitings expected things to work out, they would simply have to stop acting as though they were crazy about each other.

To a great extent, they never did. There remained in that marriage a certain mutuality of gentle regard that I learned increasingly to value as I grew old enough to know something about how it is between a man and a woman. Even the overt unselfconscious expressions of affection never disappeared. As the years pa.s.sed, Phil made a prosperous career in commercial real estate, and the Bronx apartment was in time succeeded by the beautiful house in Westport, Connecticut, where the three Whiting children were raised. After the kids were grown, Janet and Phil moved to a luxurious condominium in Stratford. When Phil retired from full-time work at sixty-four, the children were long since successfully on their own, there was plenty of money, and the future seemed secure.

After several decades of not seeing the Whitings between my early twenties and forties, my path crossed theirs again in 1978, when they were living in the condominium, not far from my home near New Haven. To spend an evening with those two great-hearted people was to admire the equanimity of their relations.h.i.+p and the tender respect that was implicit in even their slightest references to each other. Their union had more than fulfilled the promise of its first months. When Phil finally retired completely, and he and Janet made a permanent move to Delray Beach, Florida, my wife and I felt that we had been wrenched away from two valued friends. What we didn't know was that small strange things had already begun to happen.

Even before the move, Phil, whose keen mind had always soaked up works of nonfiction in every spare moment, had stopped reading books. Only in retrospect did that seem strange to Janet, and only in retrospect she found herself years later understanding why he began to insist that she arrange her day so that he might never be out of her company. "I didn't retire," he would grumble when she was leaving to spend an afternoon in town, "to be alone." In his earlier days, outbursts of anger had been rare; now they became more frequent, and turned into full-blown temper tantrums during those last few years in Stratford; increasingly, Phil seemed to find reasons to criticize his daughter Nancy-her visits to the condominium usually ended in tears before she got back on the train to return to her apartment in New York City. After the move to Florida, unexplainable episodes of confusion took place with mounting frequency, and Phil responded to them with disbelief and anger, as though someone else were always at fault. For example, more than once he went to the wrong shop for his regular haircut, then berated the blameless barber for supposedly neglecting the appointment he had really made elsewhere. On one occasion, he threatened to punch a startled motorist at a gas pump, just because the fellow was reaching for an adjacent fuel nozzle-this from a man who had never in his life raised a hand in anger.

Finally, there appeared the first major clue that these new failings were not merely the worsening idiosyncrasies of an aging executive restlessly unfulfilled in his retirement. One evening, Janet invited to dinner a couple whom she and Phil had not seen for several years, Ruth and Henry Warner. Phil had always been an affable host, proud of his wife's table and his own extensive knowledge of wines. Having grown somewhat corpulent while still a young man, he had learned to wear his girth well, so that his ample belly and easy round-faced smile contributed to an air of cheerful prosperity that fairly exuded from some bountiful generosity of spirit within. He was an easy man to like, and he knew how to expand the atmosphere of comfortable bonhomie that his very presence suggested. In his own home or someone else's-it made no difference-Phil was like a bighearted innkeeper whose only wish was the well-being of everyone around him.

And so it had been at that dinner. Janet's food was delicious, Phil's wines were expertly chosen, the table talk was by turns intense and lighthearted, and the evening was enveloped in the cozy mist of gemutlich gemutlich pleasure that was typical of a visit to the Whiting home. The Warners said their good nights in the warm haze of that good feeling so well remembered from earlier years. pleasure that was typical of a visit to the Whiting home. The Warners said their good nights in the warm haze of that good feeling so well remembered from earlier years.

On the following morning, Phil couldn't remember any of it. He was unaware of having so much as seen the Warners, and no amount of explanation would convince him that they had visited. "And that frightened me," recalled Janet, whose mind until that hour had been seeking rationalizations for the undeniable changes in Phil's recent behavior. And yet, even at that morning's point of seeming no return, she tried to explain away this most recent of the disquieting episodes she was so often observing. "I thought, Well, sometimes I forget things, too, and maybe he'll talk about it later." So desperate was she to look away from the glaring terror of thoughts that were mounting ever higher in her awareness that she almost convinced herself of the insignificance of her husband's latest lapse.

But a few weeks later, Janet's fragile structure of defenses was overwhelmed by an incontrovertible demonstration that forced itself in sharp focus into her direct line of sight, refusing to be dispersed or even blurred by her exhausted powers of justification. On returning home from a few hours away one afternoon, she found herself confronted by an outraged Phil, angrily accusing her of having gone to visit her lover. Even more upsetting than the accusation itself was the ident.i.ty of the putative "lover": Phil's cousin Walter, who had been dead for many years. "At that time, I didn't even know what Alzheimer's was-I only knew that I was scared. Something terrible was happening to Phil, and I couldn't ignore or explain it away anymore."

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 pa.s.sing emotional upheaval or that his bouts of inappropriate behavior would not progress, or might even disappear with the pa.s.sage of healing time. The episodes were, after all, not only brief but unremembered. As soon as the moment pa.s.sed, 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 p.r.o.nouncement 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 thras.h.i.+ng 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 herself. After taking a careful history and doing the physical, the doctor came out of the examining room and p.r.o.nounced the name of Phil's sickness. By then, Janet had become somewhat familiar with the characteristics of Alzheimer's disease, but even her antic.i.p.ation 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 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 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 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 The 36-Hour Day, "Sometimes people with dementing illnesses... may slam things around [or] hit you," she could never have antic.i.p.ated 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 embarra.s.sed! 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 not my wife!" 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 G.o.d 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 pa.s.sing 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 was.h.i.+ng 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."

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 p.r.o.nounced 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 a.s.suming 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 The 36-Hour Day chose that t.i.tle. 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. chose that t.i.tle. 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 pa.s.ses, patients will gradually slide toward complete dependency. Those who do not succ.u.mb 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 n.o.bility 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 relations.h.i.+ps, 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 gla.s.s 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 cla.s.sify 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 a.s.sociation. 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 a.s.sociation (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 a.s.surance 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 partic.i.p.ant by the spiritual subjugation of Alzheimer's.

The road back from isolation starts with the p.r.o.nouncement 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 a.s.sociated with it had been observed and described for centuries as an as-yet-unspecified part of that vast panorama called senility.

"Dementia of the Alzheimer type" is the official t.i.tle of the disease that is at present being newly diagnosed in several hundred thousand people each year in the United States. It accounts for somewhere between 50 and 60 percent of all dementing illnesses in those over the age of sixty-five and strikes many others in their middle years. The American Psychiatric a.s.sociation describes its onset as insidious, with a "generally progressive, deteriorating course, for which all other specific causes have been excluded by the history, physical examination and laboratory tests. The dementia involves a multifaceted loss of intellectual abilities, such as memory, judgment, abstract