The Inheritance

by Niki Kapsambelis

  A few years before Alzheimer joined the staff, the assistant medical director of the Frankfurt asylum, Franz Nissl, had invented a method for staining brain cells, turning their components a vivid shade of methylene blue that made them easier for researchers to analyze. The process, known simply as the Nissl stain, is still in use today.

  In Nissl, Alzheimer found a lifelong friend. They shared a professional interest in linking symptoms of mental illness to physical causes through a microscopic analysis of the brain. Better imaging, they reasoned, would allow doctors to more clearly define and treat the disorders. In those early years, Nissl and Alzheimer worked as clinicians by day and conducted their research by night, frequenting pubs when time permitted. Nissl served as a witness when Alzheimer married his wife, Cecilie, the widow of a wealthy diamond dealer who had briefly been his patient. But in 1901, Alzheimer suffered a devastating personal loss when Cecilie died months after giving birth to their third child. Grief-stricken, he buried himself in his work, personally seeing virtually all newly admitted patients and committing his findings to an extensive written record. Cecilie’s fortune would later allow Alzheimer to devote all his time to research, a rarity for that era.

  The same year that Alzheimer lost his wife, a Frankfurt railroad worker named Karl Deter was also losing his.

  Auguste Deter was a wife and a mother, hardworking and orderly. In school, she may have been a student of Alzheimer’s grandfather, Johann. She married her husband, Karl, in 1873, and together they had a daughter, Thekla.

  In March 1901, just before her fifty-first birthday, Auguste began developing the bizarre symptoms that would mark her rapid decline into dementia. Although she’d always had a somewhat excitable personality, she became inexplicably and irretrievably jealous, accusing Karl of having an affair with their neighbor. She began blundering through the cooking and the laundry, and she started squirreling objects away in their home. She cried constantly. She was convinced that a courier who frequently stopped by was plotting to hurt her.

  “She lives in a world of the moon,” Karl Deter reportedly said to a work colleague. “Even my jackets are badly cared for.”

  Things continued to roll downhill in the Deters’ home. Unable to sleep, Auguste sometimes wandered at night, or worse, woke up screaming uncontrollably. She deteriorated to the point where she could not handle any type of work. She busied herself with plans to visit her mother, who had been dead for more than ten years. She accused her husband of hiding jewelry she had inherited from her grandmother.

  Auguste was admitted to the Castle of the Insane, where Alzheimer took notes on his first visit with the new patient on November 26, 1901:

  She sits on the bed with a helpless expression.

  What is your name? Auguste.

  Last name? Auguste.

  What is your husband’s name?

  Auguste, I think.

  All told, Auguste spent close to five years at the asylum, and by any account, it was hard time. Moody and anxious, she alternated between calling for her husband and daughter and failing to remember parts of her own name. Sometimes she withdrew or whined; she continued to hoard objects, this time under her bed, and dragged the bedclothes around or buried herself under them. She was not allowed to wander freely because she would become aggressive with other patients and grab their faces, although sometimes she was also kind and courteous. Most of her days were spent in the bathtub, a common remedy that was intended to soothe agitated patients. Her nights were spent in the ward’s isolation room. “I have lost myself,” she confided to her doctor.

  Although Alzheimer had seen patients with similar cognitive deterioration, most of them had been much older than Auguste Deter—in their seventies, not early fifties. He attributed their dementia to atherosclerosis, a thickening of the brain’s blood vessels. He continued to study his unusual and otherwise healthy patient, calling her malady “the disease of forgetfulness,” never realizing that her affliction and those of the older patients were likely one and the same.

  “Are you sad?” Alzheimer asked her on a visit in early December 1901.

  “Oh always, mostly not,” she answered. “It happens that one sometimes has courage.”

  • • •

  In 1902, Alzheimer left the asylum to take a new job working with the most respected German psychiatrist of the day, Emil Kraepelin. He hadn’t been able to cure or even successfully diagnose Auguste, but his fascination with the weeping, lost woman never waned; he kept track of her condition with the help of his former boss. Auguste’s husband, who struggled to pay her medical bills, also visited her when he could. By 1905, she was bedridden and incontinent, unable to feed herself. Her weight dropped to sixty-eight pounds, and she lay curled in the fetal position. Her agitation stopped responding to sedatives. A bedsore festered into sepsis and pneumonia, and she died on the morning of April 8, 1906, a month shy of her fifty-sixth birthday.

  Twenty days later, Alzheimer’s former clinical director at the Castle of the Insane sent a box containing Auguste’s brain, brainstem, spinal cord, and medical records on a train to him in Munich, 190 miles away, where Alzheimer spent the next six months analyzing her disease. At his disposal was a laboratory outfitted with the most modern equipment available, including the first distortion-free microscopes.

  Alzheimer’s assistants prepared more than 250 slices of Auguste’s brain and spinal cord into slides stained with several different techniques, including the one invented by his old friend Nissl, to help him better examine the intricacies of the cells. There, Alzheimer got his first glimpse of Auguste Deter’s enemy within.

  As he studied her cortex, the brain’s largest section and the one that controls higher functions such as thought and action, he saw that it had been taken hostage by brown clumps of plaque, sticky blotches resembling tumbleweeds that had landed in the space between neurons. A different stain revealed all manner of tangled fibrils—dark, twisted bundles resembling balls of twine, crescents, and baskets, growing out of control and wiping out a third of the neurons in her cortex. In short, Auguste’s brain, like her body, had atrophied, apparently thanks to normal cell components that had somehow turned traitorous.

  With so much cellular death, Alzheimer felt certain the lesions had to be the key to Auguste’s bizarre behavior. What surprised him most was how extensively the brain had changed—more than people in their seventies and eighties, who typically experience a loss in brain volume as part of the aging process—even though she was just fifty-six. It was not like any illness he had ever seen before. Excited by his discovery of what seemed to be a new disease, Alzheimer carefully prepared a lecture on his findings for the 37th Assembly of Southwest German Psychiatrists in Tübingen. Eighty-eight respected colleagues were in attendance, including Nissl and the child psychologist C. G. Jung. When Alzheimer concluded his remarks, he expected an avalanche of questions.

  Instead, he was met with deafening silence. The conference chairman, who was acting as moderator, repeated himself: Did anyone have a response? They did not. He thanked Alzheimer for his presentation and moved on.

  In hindsight, it’s difficult to imagine a lack of interest in the discovery of such a widespread disease. Yet within the context of early twentieth-century psychiatry, the collective shrug was not surprising. The field generally did not believe in a correlation between mental illness and biological causes. (One notable exception was general paresis of the insane, a form of dementia caused by syphilis.)

  Alzheimer hoped his discovery might help underscore the connection between brain and behavior. But Auguste Deter’s case seemed too rare to be of clinical importance, given that no link had been established between her disease and the more common senility of older patients.

  The audience was eager to move on to the presentations that followed, which delved into the sexier issues of hypnosis, childhood trauma, and Sigmund Freud’s new field of psychoanalysis. Disappointed, Alzheimer packed up his slides and left the stage. The local newspaper devot
ed one sentence to his talk.

  The disinterest of the psychiatrists at the conference would prove an unfortunate foreshadowing for the way the field treated Alzheimer’s disease for the next several decades. Scientists simply didn’t understand that they were dealing with a disease that was affecting people all around them; it would remain an invisible predator—its power unchallenged.

  Although Alzheimer’s presentation flopped at the conference, he retained the enthusiastic support of his boss, Emil Kraepelin, who shared the radical theory that mental disorders had physical causes and was pleased to promote the discovery. Four years after the Tübingen conference, Kraepelin coined the term “Alzheimer’s disease” in the eighth edition of his book Psychiatrie, or Handbook of Psychiatry.

  Ironically, Kraepelin—who valued classification—unwittingly worsened a key confusion over Alzheimer’s disease by defining it as a dementia that occurred in patients before the age of sixty-five. After that arbitrary milestone, it was the much more common senile dementia, he said. And senility was so common that it was thought to be a standard part of aging, like graying hair or sagging skin.

  Alzheimer himself didn’t dispute this. In 1911, he wrote that while the two diseases were similar, he could not be certain they were identical. Yet the only difference was that the dementia happened to some people earlier than others. This misperception would muddy the waters for decades, allowing this widespread disease to go largely unexplored.

  Unfortunately, neither man would live to see the discovery vindicated. During the next fifty years, little public fanfare was given to Alzheimer’s findings, which were thought to be interesting but too rare to be of larger significance. Plagued by heart and kidney problems, Alois Alzheimer died in late 1915. The slides he made from slices of Auguste’s brain, as well as his notes, clinical materials, and case histories in both Latin and German, were added to blue cardboard files and left to collect dust deep within Johann Wolfgang Goethe Frankfurt University Hospital, where they lay until 1995.

  Two

  THE SALT OF THE EARTH

  IN 1973, FORTY-THREE-YEAR-OLD Galen DeMoe sat in his pickup, surrounded on all sides by the North Dakota oil fields where he’d worked his entire adult life, the rigs pumping oil out of the dirt while crews alternated between backbreaking, treacherous labor and long stretches of boredom.

  To an outsider, the rigs can all look the same, metal towers whose machinery moves day and night, the ground underneath spattered with petroleum. But a practiced oilman can see in an instant which rigs are well maintained, which ones will feed his family, which ones are an explosion waiting to happen. Galen, whom everyone called Moe, had been working in the oil fields for a quarter of a century and knew them like the back of his weather-beaten hand.

  But on this day, he sat in his truck, confused and desperate, with no idea where he was supposed to go.

  Impossibly, when a coworker found him that way, Moe was crying.

  • • •

  Galen DeMoe was a larger-than-life figure in the small North Dakota town of Tioga. He was a hard drinker, a harder worker, and one of the best-liked men in the oil fields. Nobody could outpace Moe when it came to his work ethic. He would drive through the most brutal ice storms to get to a job, put in shifts that would have broken a lazier man, and he’d still make time for a shot and a beer afterward, recounting the day’s war stories with a laugh. He never left his coworkers hanging out to dry, and on an oil rig, that was a virtue that could save lives. Although he harbored a soft spot for children, at home his temper emerged, which his four sons and two daughters had learned to fear, his face screwed up in anger beneath his perpetual flat-top haircut. Nevertheless, their household was always full of laughter and love, due in large part to his charismatic and devoted wife, Gail.

  That was a good picture of you just as good looking as ever. Be good now and let those boy[s] alone in school.

  —excerpt from a letter written by Moe to Gail, April 17, 1951

  Born in 1930, Moe was raised on a farm in west-central Wisconsin, the oldest of five. He and his siblings were never especially close, perhaps in part because of a wide age gap: The two oldest children, Moe and Vic, were three years apart in age; but the third child didn’t arrive until Moe was fourteen, with two more born soon after that.

  Seven hundred miles away, in North Dakota, young Gail Helming was a lively girl, creative and witty, with a delicious sense of humor. Small-framed, with deep dimples and wavy brown hair, she wore cat’s-eye glasses and the prim fashions of the early 1950s—Peter Pan collars and high-button blouses. Gail maintained an ongoing love affair with the written word; she composed poetry, played the piano, and on occasion would spontaneously break into song. Popular and high-spirited, she loved to make people laugh. Nobody would ever accuse Gail of being an introvert.

  She may have made friends easily, but Moe was the first and only man Gail ever loved. In 1947, when he was sixteen years old, Galen DeMoe left his family’s farm just outside Eau Claire, Wisconsin, and hitchhiked west with a friend to seek his fortune in the oil fields of North Dakota, where the two boys boarded with Gail’s mother.

  For twelve-year-old Gail Helming, it was love at first sight: “It’s funny how at that age, sparks can fly. Me, I thought he was the best thing since 7UP,” she said. She saw fate in their similar names: Clearly, Galen and Gail were meant to be together.

  • • •

  Their romance would build slowly over the next decade, through his four years in the military and a stint working in Alaska. Moe came home from the frontier as soon as he had enough money for an engagement ring and a car.

  Gail didn’t know much about the family she was marrying into, a fact that would haunt her for the rest of her life. She traveled to Wisconsin to meet Moe’s parents, where on that visit Wanda DeMoe did act a little strange. When Gail arrived, Wanda was preparing to host members of her local Homemakers Club, and she spent Gail’s visit cleaning and putting out desserts instead of getting to know the girl who had won Moe’s heart. Gail wondered why Wanda hadn’t simply told her this would be an inconvenient time to arrive. Wanda’s housekeeping seemed disordered, too, but since her future mother-in-law wasn’t physically strong, and she was going through menopause, Gail just dismissed her domestic quirks. She never minded a little eccentricity; in fact, she embraced it. “I was in love, no matter what,” she said.

  Though Gail was just twenty, many of her friends were already married. Eight years after she first laid eyes on him, she and Moe became engaged in January 1955, and they wed the following August.

  “We had the reception at my folks’ house, which is unusual,” Gail recalled. “And the priest got drunk. He was supposed to go and hear confessions on the other side of town, but he didn’t make it.”

  The newlyweds settled in Tioga, their arrival coinciding with one of the town’s many oil booms, meaning Moe could expect steady employment. The self-proclaimed “oil capital of North Dakota,” Tioga lies nestled in the state’s northwest corner, about an hour’s drive south of Saskatchewan or east of Montana. It was founded in 1902 by homesteaders from Tioga County, New York, and the presence of the Great Northern Railroad meant that from its inception, it was a town that attracted outsiders seeking their fortunes.

  On April 4, 1951—four years before Gail and Moe were married—the Amerada Petroleum Corporation discovered oil in Tioga on the Clarence Iverson farm. Around the same time, wells were drilled on the Henry O. Bakken farm northeast of Tioga, which was the first recorded extraction of oil from what is now called the Bakken Formation—approximately two hundred thousand square miles of oil-rich rock stretching underneath North Dakota, eastern Montana, and southern Saskatchewan.

  Those discoveries sparked Tioga’s first oil boom, setting off a chain reaction that echoed loudly into the next century. The US Geological Survey estimates that 4.3 billion barrels of oil lie in the Bakken, though some peg its rocky reservoirs as high as 200 billion.

  With the oil boom, the popul
ation burst wide open, fueled by a steady influx of speculators, oil companies, and laborers hoping to benefit from the discovery of black gold on the North Dakota plains. Tioga grew from about 500 people to 2,700 in 1959.

  The newly minted Mr. and Mrs. DeMoe settled into an eight-foot-by-thirty-three-foot trailer provided by Halliburton for its employees, and Moe set to work in the oil fields.

  “Then the family started,” said Gail. “Once I got the machine going, I couldn’t get it turned off.” Nor did she want to, because Gail was a born nurturer. People were drawn to her natural sense of empathy and her willingness to accept them.

  Brian came first, in 1956, and by everyone’s account, he was his mother’s favorite. He was a miniature Moe, all freckles and swagger. Karla, Lori, Doug, and Dean followed in quick succession. The youngest, Jamie, arrived in 1971, nine years after Dean. The other children had hoped Jamie would be a girl, so they could be like the family on The Brady Bunch: three boys and three girls. Though they never achieved that symmetry, the siblings’ bonds were strong.

  As the DeMoes grew, they moved from their tiny trailer and found a clay-colored rambler at the corner of North Hanson and Second Streets that was just right for a large, boisterous family. It was a one-story house with the biggest living room they’d ever seen and a galley-style kitchen that was never quite big enough.

  It was a noisy, riotous house that resembled Grand Central Terminal more than the split-level perfection of The Brady Bunch. Every corner, every cupboard was steeped in the personality of the people who lived there. From the battered upright piano in the living room came the sound of students plunking away at the lessons Gail gave; in the refrigerator lurked jars and containers of sauces and contents of mysterious origin. Everyone was too busy to throw them out. In an unused, detached garage out back, the boys snuck beers, risking their father’s wrath. Late at night, their friends tiptoed down into the finished basement so frequently that thirty years later, they still remembered which squeaky steps to avoid.