The Forgetting Read online

  If an Alzheimer’s sufferer, for example, has progressed to the point where he is trying to put on an undershirt over a sweater, it now could be easily discerned that he has slipped into stage 6a of Alzheimer’s, which, via retrogenesis, can be reasonably correlated to age four. Knowing that, one can also infer that the patient has now slid into what Piaget called the “Preoperational” stage. He is still able to represent reality through symbols (to count on his fingers, for example), but he is no longer able to rely on a solid foundation of logic (to understand the importance of going to bed early if he has to get up early the next day). He is also on the cusp of losing the sense that his point of view is distinct from that of others.

  Properly utilized, the lens of retrogenesis can allow caregivers to enter the world of Alzheimer’s disease with a broad new understanding. Caregivers can hone a sense that something coherent is happening, rather than what looks to the uninitiated like a random and unintelligible breakdown. Anyone who understands childhood can grasp the basic concept of reverting to that state, of developing in reverse. It helps make Alzheimer’s caregiving a more human endeavor.

  In Max’s New Suit, Rosemary Wells’s popular children’s book, Max the young rabbit bumbles through the task of dressing himself. His older sister Ruby tries to teach him, but Max still puts his pants on over his head and his shirt on his legs. It is written about, and for, a very young child, but will work just as well in any nursing home (where between 60 and 80 percent of the patients are suffering from dementia). The world of children’s literature turns out to be highly relevant to Alzheimer’s. In Barbara M. Joosse’s book. Mama, Do You Love Me?, to give another example, a little girl asks, “What if I ran away?”

  “Then I would be worried,” her mother answers.

  “What if I stayed away and sang with the wolves and slept in a cave?”

  “Then, Dear One, I would be very sad. But still, I would love you.”

  “… What if I turned into a polar bear, and I was the meanest bear you ever saw and I had sharp, shiny teeth, and I chased you into your tent and you cried?”

  “Then I would be very surprised and very scared. But still, inside the bear, you would be you, and I would love you.”

  The book is about a child exploring the boundaries of unconditional love. But in a home tainted by Alzheimer’s disease, it also comes off as a perfect parable for the anxieties of both sufferer and caregiver. The sufferer wants to know, What will happen when I become a real burden? The caregiver wonders how bad the wandering, stubbornness, irritability, and bursts of snarling anger will become. As the illness progresses, she will struggle to look through the disease and recognize the person inside.

  Not surprisingly, caregivers report that Alzheimer’s patients in the middle and later stages find a tremendous comfort in children’s books and music. They also like stuffed animals and dolls. The child’s world—nurturing, safe, colorful, full of soft edges and sweet treats—is what middle-stage patients crave. “Mom enjoys car rides,” says Pam from Baton Rouge, Louisiana. “It doesn’t matter where we go or if we go anywhere other than drive around. She likes to look at the trees and anything green.… She got to the point where being in the store didn’t work out too well. Now we still go but not to accomplish anything. We walk the mall and window-shop. If we go in a store it’s like the Disney Store or a toy store to look at the stuffed animals. We look at the plants and decorations. We get ice cream.”

  The daughter has become the mother, the mother the daughter. Catastrophic disease often alters roles, but only Alzheimer’s disease can fully reverse them.

  Some days are so normal, I am guilty of thinking, “Well maybe he really isn’t …?” Then, to bring me back to reality, he wraps all my Tupperware in masking tape. Today, he went out to his workshop to “fix” an old LP record player, got side-tracked and ended up in the yard with a pair of clippers where he decimated my carefully cultivated rosemary bushes.

  He was so proud of what he had done. Got rid of those weeds! Oh, well, the air was redolent with the aroma of rosemary. Rosemary is supposed to be the herb for remembrance. Maybe I should rub it in his hair.

  —M.V.

  Ft. Pierce, Florida

  Chapter 9

  NATIONAL INSTITUTE OF ALZHEIMER’S

  In the 1960s, public officials in industrialized democracies around the world began to notice something: There were more old people than ever, and they voted. The portion of the population living to eighty-five or beyond had tripled since 1900, and the elderly were becoming conspicuous for the first time in human history. In the U.S., a new lobbying organization, the American Association of Retired Persons (AARP), founded in 1958, was on its way to making senior citizens the most powerful interest group in American politics. In 1965, the U.S. government established Medicare, a sweeping federal program designed to protect every citizen “against the ravages of illness in his old age.”

  Around the same time, researchers were finally uncovering the true significance of one of those illnesses. At the Albert Einstein College of Medicine in New York, neuropathologists Robert Terry and Robert Katzman were shocked to see plaques and tangles turning up in so many brain samples. “We found Alzheimer’s cases coming out of the woodwork,” said Terry. “It was very common, and that surprised us. We didn’t know that Alzheimer’s was so common. Everybody thought that senile dementia was due to small artery disease.”

  After Katzman’s sixty-four-year-old mother-in-law was diagnosed with Alzheimer’s, he finally realized the larger hidden problem—the very problem that Meta Neumann had tried to expose two decades earlier. “It became obvious to me that Alzheimer’s disease was a single entity regardless of age of onset,” he said. “When I did simple multiplication, it became evident that this was a very important public health problem.”

  According to Katzman’s calculations, Alzheimer’s was already one of the leading causes of death in the United States, probably already killing 100,000 people per year in the U.S. alone. Those numbers would only get larger as the population aged even more.

  The world had ignored Meta Neumann in 1953, but now people were ready to listen. Katzman’s speeches and editorials in the early 1970s struck a chord with the medical community, which finally seemed open to the idea of senile dementia being a disease. As society aged, mores were shifting. So many people were living so long that senility didn’t feel so normal or acceptable anymore. A critical mass of doctors began to prefer to see senility as a disease. The medical establishment was now ready to take on the moral challenge of Alzheimer’s, to make a commitment to intervention.

  But how? Researchers didn’t know much more about Alzheimer’s in the 1960s than they had in 1910. Robert Terry used an electron microscope to observe plaques and tangles at magnifications of up to one hundred times greater than Alois Alzheimer’s original view, enabling him to begin to map out a cellular “ultrastructure” of the disease. But his extreme close-ups still did not reveal a cause, or even indicate whether plaques or tangles were closer to the root of the problem. Further progress would require a major new investment in the science of aging and the biology of Alzheimer’s. In the early 1970s, health experts called on Congress to establish a National Institute on Aging.

  The National Institute of Health (NIH) was established by Congress in 1930, but it wasn’t until the late 1940s that two Washington activists began to transform it into the world’s foremost center for medical research. Florence Mahoney was a former newspaper reporter and the wealthy widow of the publisher of the Miami Herald; Mary Lasker was cofounder of the prestigious Albert Lasker Medical Research Awards, the recipients of which commonly go on to win the Nobel Prize. Together, the two women devised a lobbying technique known as “the politics of anguish,” coaxing friends in government and the media into focusing on the ravages of particular diseases rather than general scientific research.

  This disease-by-disease approach converted dispassionate intellectual curiosity into a series of personal crusades. P
oliticians effortlessly gravitated to a war on cancer. They found it easy to convince their constituents that everyone’s grandchildren should be spared from polio. Between 1950 and 1960, thanks to Mahoney and Lasker, the NIH budget grew from $46.3 million to $400 million—and became the National Institutes of Health.

  Questions about aging research, though, caused a rift between the activist duo. In the early 1970s, Mahoney became convinced that the NIH needed a distinct institute to focus exclusively on the problems of the fastest growing part of the population. Lasker disagreed. She felt that the best way to deal with the problems of aging was to continue the fight against heart disease and cancer. Mahoney went ahead on her own, helping to push the Research on Aging Act of 1972 through Congress. It was vetoed that year by Richard Nixon.

  Congress did not have the votes to override Nixon’s veto, but two years later it unexpectedly had a different sort of leverage. In 1973, the Nixon White House began to fall under the siege of the Watergate investigation. By 1974, impeachment seemed a very real possibility, giving Congress the upper hand on Nixon. When the Research on Aging Act of 1972 was passed essentially unchanged by Congress as the Research on Aging Act of 1974, Nixon—desperate not to provoke the representatives controlling his fate—signed it. It became law on May 31, 1974, less than two months before he left office.

  Robert Butler, the first director of the new National Institute on Aging (NIA), immediately signaled that he intended to make Alzheimer’s a top priority. He hired the neurobiologist Zaven Khachaturian to wage war on Alzheimer’s.

  Khachaturian had been interested in the biology of memory since his days as an undergraduate at Yale in the late 1950s. Later, at the University of Pittsburgh’s psychiatric department, he had started to focus on the physiology of forgetting and dementia. Along the way, he also felt the personal sting of the disease: His mother suffered from a progressive memory loss that he later came to suspect was Alzheimer’s. “She was increasingly unable to remember the names of people she had just met,” he recalled. “She repeated the same questions again and again, as though they had just popped into her head for the first time.” Her forgetting progressed slowly; for many years before she died (from heart disease), she was lucid enough to question her son about his memory research—and yet unable to remember much of what he said.

  As his mother drifted away, Khachaturian fashioned himself as the brigadier general of the modern war on Alzheimer’s. Over two decades, he recruited top researchers, designed research paradigms, collaborated on funding proposals and translated the science to Congress and the public. “I started a crystal growing in all of the major areas—a group on neurochemistry, a group on protein chemistry, one on the infection hypothesis, and one on genetics. I tried to get all the major ideas started because I had no idea which one was going to pay off.

  “I also purposefully tried to recruit people who had opposing points of view. There were royal battles. But since I was doling out the money on behalf of the government, my attitude was that I was going to get all these folks started on a level playing field.”

  The organic crystal quickly grew into a research palace. In the first five years, NIA research funding rose from $19.3 million to $70 million. By 1985, the NIA had established ten federally funded Alzheimer’s disease research centers—a brainchild of Khachaturian—to coordinate clinical, behavioral, and laboratory research. The battle was on.

  The public also started to learn about Alzheimer’s for the first time in the late 1970s, from doctors and the media. In the U.S. Rita Hayworth was diagnosed in 1980. That same year, the syndicated columnist Abigail Van Buren printed an aching letter about Alzheimer’s in her “Dear Abby” column. In 1982, President Reagan conferred the first of his two giant spotlights on the disease by proclaiming November “National Alzheimer’s Month.”

  George Glenner, chief of molecular pathology at NIH and one of Zaven Khachaturian’s star recruits to Alzheimer’s research, was invited to the White House for the proclamation. As one of the few Alzheimer’s experts present, Glenner was given the task of explaining the little-known disease to Reagan.

  “The President looked at me and asked, ‘What is Alzheimer’s disease?’” Glenner recalled. “I explained that it was tangles and plaques that form in gray matter that keep neuronal cells from being nourished. Well, he looked at me and smiled.

  “‘All I know is that my mother died in a nursing home and she didn’t recognize me at the end,’ he said.”

  Turning Alzheimer’s into a household word was an official part of the political research strategy—using the “politics of anguish” as a tool to raise as much public interest and as many public dollars as possible. But there was a fallout from educating masses of people about a haunting and incurable disease. While scientists regarded Alzheimer’s as a great new frontier, an exciting challenge, the public was left merely bewildered and anxious.

  The new message was oppressive and hopeless: Old people did not sometimes gently “go senile.” Rather, they were afflicted with a disease. No one was immune from this disease. The cause was unknown. There was no foreseeable treatment or cure.

  The longer one lived, the greater one’s chance would be of getting this disease.

  Inadvertently, health officials had created two new problems: a new disease and a new cultural demon. The public needed more. To exist alongside the frightening unknown is often simply intolerable. In order to cope, we all need some comprehensible grasp of events outside our control, whether or not the interim explanations turn out to be true.

  Senility had been frightening enough to people before it was called Alzheimer’s disease, of course, and people had always sought comforting explanations for it. One ancient Roman superstition held that old people lost their memories as a result of reading epitaphs on tombstones. A tenth-century Arabic medical text blamed senility on cold, tenacious phlegm in the brain. Then, in the seventeenth century, the suspicion shifted to an excess of internal humidity—followed by a counter-theory that the real culprit was excessive dryness.

  In 1984, amidst the surge in popular interest, the Nobel laureate Torsten Wiesel offered an irresistible, if accidental, explanation for senile dementia at a New York City cocktail party. In casual conversation, Wiesel made a vague reference to a possible link between aluminum and Alzheimer’s disease.

  Immediately, ears around Wiesel perked up. What’s this? A plain explanation for Alzheimer’s disease? The remark spread like a virus, and mutated. Word got out, incorrectly, that Wiesel was about to publish a paper proving that aluminum causes Alzheimer’s disease.

  Even (perhaps especially) in our modern age dominated by science and reason, people need to fill the void of ignorance with something; Wiesel’s suggestion clicked, for many, with their intuitive suspicion of modern life. Of course we are killing ourselves with the invisible residue of progress—radioactivity, pollution, trace molecules from the plastics and metals that define the contours of our daily existence. Alzheimer’s from aluminum: a new disease for an advanced civilization. People may not have understood the link exactly, but somehow it made perfect sense. A powerful myth was born.

  Suddenly, in New York and spreading elsewhere, people began to toss out their aluminum cookware, their aluminum-laden antiperspirants, and their aluminum-based antacids. The Aluminum Association went on the defensive, insisting to reporters that its foils and saucepans were safe. But the image of aluminum-as-brain-toxin stuck. The link between aluminum and dementia became the one “fact” about Alzheimer’s disease that every literate adult seemed to know.

  The truth was less captivating than the buzz. Aluminum wasn’t a cause of Alzheimer’s disease, but an effect. High concentrations of aluminum had indeed been found in victims’ brains during autopsy; this meant, though, that something had gone wrong with the filter system, called the “blood-brain barrier,” that was supposed to keep such elements out of the brain. Everyone ingests significant amounts of aluminum and other metals from the water, air, and man
y natural foods. In healthy individuals, these complex elements are safely kept out of the brain, where they would do serious damage.

  Researchers couldn’t figure out why the blood-brain barrier was being compromised, but it was clear enough that avoiding aluminum pots in order to escape Alzheimer’s disease was like refusing to drink out of glass containers because someone might come along and break one over your head: The hazard has nothing whatever to do with ordinary use.

  It turned out that Wiesel was not even working on Alzheimer’s disease, let alone writing a paper on the dangers of aluminum. When reached for comment by a Washington Post reporter, he quickly corrected the misimpression and laughed nervously about the unintentional power of his offhand remark, vowing to be more careful.

  What of the people, though, who would not make such a vow?

  INTERVIEWER: So you’re saying [Alzheimer’s] is not just a brain problem?

  DR. RICHARD SCHULZE: Oh, no, not at all. [One patient of mine] came out of it by cleansing his bowel.… Some people are there because they are toxically poisoned from the outside. Some people are toxically poisoned from the [inside]. Or it’s from emotional strain they couldn’t deal with. Some from metal poisonings like aluminum. I’ve met people who were just overdosed with aluminum from the fluorides to the antacids to aluminum pots and pans. So I think you have to take each case individually.… There’s no such thing as Alzheimer’s disease, that’s what I’ve discovered. Every person has a different story, from mothballs to aluminum, to “I couldn’t handle my life because my husband was cheating on me.”

  —from The Last Chance Health Report, edited by Sam Biser

  A popular figure in the world of alternative healing, Dr. Schulze is not a medical doctor. Among other credentials, he has a doctorate in herbology from the School of Natural Healing, an unaccredited correspondence school based in Orem, Utah. He sells books, audiotapes, videotapes, and several “original” herbal formulas to combat a wide variety of diseases. He offers a special tea for dementia patients: