The Inheritance

by Niki Kapsambelis

  Their first child, a girl, was born in 1978. Brian and Christy’s second child was a boy.

  All told, they were together for ten years, but many of those years were miserable. As had happened with Moe, Brian’s personality was changing, though also like Moe, the source of those changes would always be clouded by his substance abuse. He verbally berated Christy. He became aggressive, often taking out his anger on the family pets, and his drug habit expanded; an unabashed pot smoker throughout their courtship, he graduated to cocaine. They both worked hard, but the family was broke. One Christmas, all they had to give the kids was a checkerboard.

  But there was also a side to Brian that endeared him to people, especially Gail. He had a way with women her age; he doted on them, danced with them, paid them compliments and brought them little mementoes, sang songs they’d loved when they were younger—“You Are My Sunshine” was a favorite. His work ethic, the DeMoe hallmark, earned him a spot on a crew that went to Alaska to help with the cleanup of the Exxon Valdez oil spill.

  The marriage finally breathed its last in 1987, and the children left with Christy. Later, during a rough patch in high school, Brian’s son moved in with Gail and his uncles.

  “Those were some of the best days,” Gail recalled. Karla and Lori were gone, but her sons and grandson remained.

  “It was always Mom and the boys,” Karla observed.

  Other families drifted apart as the children grew up and moved away, keeping in touch with a phone call every few weeks or a holiday visit once a year. But the boys were reluctant to leave Gail’s house, returning to her often, protecting her in a way they couldn’t when their father had lived with them. Doug, in particular, could never leave her. He never lived anywhere except Tioga, and he returned to live with Gail every time a relationship soured.

  Karla and Lori copied her nurturing style with their own children, referring to Gail’s example often. She had never been a woman of great means, but she made certain her door was always open, especially in times of crisis. For she knew those connections would help them survive, and the family she created with Moe would continue, even though his illness had taken him away.

  • • •

  Ironically, while the children’s interest in Moe declined, doctors in St. Cloud were taking a closer look at his unusually young case of dementia, beginning almost as soon as he was hospitalized. His children knew nothing about it. A typewritten consent form dated April 5, 1979, described a project that aimed to study “mental confusion, disorientation, irritability and rapidly changing mood.” The fifteen-week study planned to use three drugs: Hydergine, which was thought to increase circulation and activity in the brain; an antipsychotic drug sometimes prescribed for schizophrenics called thiothixene (which the consent form referred to as a tranquilizer); and an antidepressant called desipramine. Some patients would get a placebo.

  Hydergine, an extract of a fungus that grows on rye, was the first drug believed to show some promise in treating Alzheimer’s. A year after UC San Diego neurologist Robert Katzman wrote his editorial calling for an increase in research, the FDA approved its use in Alzheimer’s patients sixty and older in 1977, two years before Moe began taking it.

  The drug was developed by Albert Hofmann, a Swiss chemist best known as the inventor of LSD. Although it was originally created to treat hypertension, because it dilates blood vessels in the brain, it wasn’t very effective at lowering blood pressure. However, some patients reported that it did improve their memory and mood, which led to its use as a treatment for dementia. Because of his age, Moe represented an opportunity to test Hydergine’s effectiveness in younger patients.

  “I understand that the reports and data collected from this investigation may not directly benefit me in the treatment of my disorder, but it is hoped that this study will provide information to benefit future patients with problems similar to mine,” the consent form read.

  The study, one of many run through the research service at the Veteran’s Administration (VA) in St. Cloud, followed people with “chronic organic brain syndrome,” a catch-all phrase used to describe any decrease in mental function for reasons other than psychiatric illness. In addition to Alzheimer’s patients like Moe, it tested anyone with similar symptoms.

  Underneath, in shaky penmanship that bore no resemblance to the letters he’d once written while courting Gail, Galen DeMoe scratched out his signature.

  The study enrolled patients from nine VA facilities from August 1, 1978, through October 31, 1979. It turned out to be a bust. Though researchers hoped to enroll six hundred people, they only managed to recruit ninety-seven. The last patient follow-up was at the end of February 1980. No results were ever published, and a request to extend the study by three more years was denied. Scientists would continue to study Hydergine for two more decades, with most concluding that its benefits were extremely modest at best, though it did seem to help people with vascular dementia, which mimics Alzheimer’s symptoms.

  And thus marked the DeMoe family’s first foray into research about the disease they did not yet fully understand.

  Six

  THE GHOSTS OF ANOKA

  ONE AFTERNOON IN Fargo, North Dakota, when her father had been in the VA hospital for a few years, Karla sat across her kitchen table from a kindly nurse from the University of Minnesota named June White. It was the shortest of visits—just long enough for Karla to offer a sample of her blood—but in hindsight, June’s work would prove to be an important stepping-stone in Alzheimer’s research.

  In Fargo, Karla and her husband, Matt, had settled in comfortably to family life. By 1985, they had two children. Perhaps because of her own difficult childhood, Karla was gentle in parenting her children. She wanted better for her kids, for them to avoid the embarrassment she had endured. They were Karla’s universe, though the pull of her extended family—three hundred miles away in Tioga—was strong, much stronger than it had been when she was growing up. She spoke with Gail nearly every day.

  June White had contacted Gail as Moe’s next of kin for help with a study that June’s boss was conducting on Alzheimer’s patients. She had stopped in Tioga to collect similar blood samples from the DeMoes who were still living there, before heading across the state to Fargo to do the same for Karla.

  At that point, though the family knew from his original 1973 diagnosis that Moe had Alzheimer’s, they believed it was an extremely rare disease. Like much of the public, they hadn’t heard of the 1968 British study linking Alzheimer’s to the common dementia of the elderly. The researchers’ latest interest seemed to reinforce their misconception: It made sense that they would notice Moe because his condition was so unusual. Though Karla knew her grandmother also had the disease, none of the children had interacted with Wanda much. On the few occasions when they had seen her, she seemed to them to be a very old woman. It didn’t really occur to them that she had been much younger than her appearance and behavior suggested.

  Karla was flattered by the researchers’ attention. She felt important, maybe even a little bit famous. Getting blood drawn seemed to be a way to help science discover something new.

  “It was a brief visit, I remember,” Karla said. “I was excited that somebody was interested. . . . I felt that things would be better.”

  June White appeared to be a nice woman who promised to keep the family updated.

  Despite the earlier warning of a possible hereditary link from the doctor who diagnosed Moe, neither Karla nor her siblings worried much about getting the disease. It seemed far too remote a possibility, and they were unaware of any of the breakthroughs in Alzheimer’s research that were happening in the field, such as Foncin’s and St. George-Hyslop’s detective work in tracing the mutation that was plaguing Family N. They thought, after their difficult childhood days were behind them, that brighter days were ahead; the future seemed ripe with possibility. The fact that a research team was interested in them seemed just another chapter in their family’s unique story, and they were ha
ppy to help, as Gail had taught them to be.

  • • •

  A mother of four, June White began her career as a registered nurse. But her true calling didn’t find her until she started collecting brains.

  She hadn’t really taken to traditional nursing, so she accepted a job working in histology—the microscopic analysis of organ tissues—at Anoka State Hospital in Anoka, Minnesota, a suburb of the Twin Cities.

  Built in 1900, the state hospital was a redbrick sanitarium constructed over a maze of tunnels said to be haunted by the ghosts of those who died there. Beginning in the 1950s, Anoka routinely collected brains from patients at all of Minnesota’s state institutions; when a patient died, the body was autopsied and the brain was separately shipped to Anoka for a neuropathologist’s diagnosis. June’s job was to serve as the brains’ curator. The gray matter arrived in all sorts of containers, including, memorably, no. 10 cans of the variety used in restaurants for bulk supplies like stewed tomatoes; they all landed in June’s collection. By the time she met Leonard Heston in 1970, she had stockpiled more than two thousand brains.

  Heston, a psychiatrist and geneticist who had newly transferred to the University of Minnesota, was interested in the origins of Alzheimer’s disease. Like a handful of other scientists who were studying Alzheimer’s, he suspected that genetics were a factor. But to test his hunch, he needed brain tissue from afflicted patients, which was hard to come by.

  He was thrilled to hear of the repository at Anoka, and for about a year, he traveled there regularly, where he read through each chart and searched for tissue with plaques and tangles. As has often been the case with Alzheimer’s, many of those patients were misdiagnosed or lumped together under the heading of “senile dementia”; Heston’s more practiced eye found Parkinson’s disease, Pick’s disease, and about sixty families with Alzheimer’s.

  In 1973, a dearth of state funding closed June White’s office. Before she left, she called Heston to offer him the brain collection. As she prepared to send him the slides and paraffin blocks of brain tissue, along with their accompanying files, Heston made her a proposal: If she would come to work for him, he could give her a raise and a four-day workweek.

  “What will I do?” White asked him.

  “That will be a surprise,” he answered.

  On her first day of work, June found her office stocked with the brains as well as the patients’ death certificates. Heston asked her to use the documents to track down the deceased’s surviving family members so she could collect their blood samples and help establish their pedigrees, which would be used in tracing a genetic link for the disease. It was a curiously personal process, one that brought scientists face-to-face with the people they hoped their work would one day help.

  White became a self-styled detective, combing through phone books and newspaper obituaries to locate the elusive families, most of whom—like the DeMoes—had no idea what Alzheimer’s disease was.

  The pursuit of an answer to the riddle of Alzheimer’s made White a seasoned traveler. She put thousands of miles on rental odometers; she flew to England; once, she hired a small plane to take her to a Canadian family in Regina, Saskatchewan. She drew blood samples from a family of thirteen children in Mexico, then casually toted the vials back across the US border in a briefcase. She put one brain through a luggage security scanner at an airport; another, packed in a Tupperware container, was handed to her by a doctor who met her in a hotel parking lot. Her experience echoed that of the search for members of Family N; many genetic researchers spent countless hours wearing out shoe leather in search of affected relatives. Their knowledge was hard-won, and for some, the personal relationships they developed with the families would create a lasting emotional bond. For others, it was easier to move on.

  In 1974, Heston published his first paper discussing a connection between the disease and genetics, in Science. White was listed as a coauthor. They continued to write papers together well into the 1990s.

  She got to know a few of the families she studied and did her best to follow up with them, but eventually, the University of Minnesota’s participation in the study also petered out. Alzheimer’s was, at the time, still a drastically underestimated disease; as such, funding remained relatively thin. By the early 1990s, Heston and White had sent their sample collection to the University of Washington, where Heston eventually transferred; a bigger sample size increased the chances of finding more definitive answers in the genes of the afflicted.

  • • •

  Meanwhile, when a much-deteriorated Moe was transferred out of the VA hospital in January 1986, he was moved to the Americana Nursing Home in Minot, North Dakota, about eighty miles east of Tioga. Although he had managed to recognize his family longer than they’d expected, his final decline had begun, opening fresh wounds for the DeMoes. Now that he was physically closer and significantly weaker, they were reminded of his existence in ways they hadn’t been—except for Gail—in years. He hadn’t been their dad for so long. Karla hated to admit it, hated how it sounded, but they’d largely forgotten him. Most of the time, he slept. He had entered St. Cloud a pudgy 214 pounds. By the time he left for the nursing home, he had withered away to 134 pounds. All his meals were pureed in a blender.

  In the spring of 1989 the nursing home called to say Moe, now fifty-eight, had developed a high fever. Gail and the kids who had remained in North Dakota—Karla, Doug, and Jamie—went to keep vigil. The staff weren’t sure what had caused the fever; they thought he might also have suffered an aneurysm in his brain stem. Moe’s temperature finally returned to normal, but he never really recovered from the incident. His breathing was labored.

  “He lost so much weight—there was just nothing left of him,” Karla said. “And the IV wouldn’t stay in anymore.”

  Gail stayed at his bedside, rubbing his neck, sleeping in a chair in his room. None of their friends came to see them, except for Hank Lautenschlager’s daughter, Roxanne. Moe and Gail, once the most popular couple in town, were on their own at the end. Gail was sure Tioga had forgotten them.

  Shaped by those experiences, Gail would never judge anyone. She openly accepted anyone who sought her counsel; there was not a bad marriage, an unruly child, an abusive parent, or an inner demon that would nullify her friendship.

  • • •

  When the call came about Moe, Karla knew she had to be there for her dad, even if he hadn’t done a good job of being there for her. Her husband, Matt, had to stay in Fargo to work, so Karla left their children—who had never really known Moe—with a friend while she waited at the nursing home with her family. She kept hoping someone, anyone, would come to their rescue and help them decide what to do next. Should they agree to a feeding tube, or let him die? If they did let him die, was that wrong? Her father had lived so long with every ingredient of his personality gone; was it humane to step away? Nobody offered any advice or support.

  Eventually, the nursing home sent them back to Gail’s house to rest.

  “We have to start cooking,” Gail told Karla. Brian, Lori, and Dean, who all had moved out of state, would be home for the funeral. Since nobody came to see them during their vigil at the nursing home, Gail did not expect anyone to show up at a funeral, either, bearing the customary casseroles and dishes that people often bring to bereaved families.

  They were back in Tioga for a day when they got another call: Come right away. This is the end.

  The trip took an hour and a half. When they arrived, the nursing home administrator informed them that by law, they had to try to put the IV in again, because of how dehydrated Moe had become.

  “Oh my God, he’s almost dead, and you’re going to bring him back to life?” Karla thought. She started crying. It was as though Moe’s illness would wring from her every last drop of strength she had.

  Whatever the final efforts were, they failed. A nurse returned to the family to say that Moe was gone. Though a priest had read him his last rites the day before, neither his wife no
r any of his children had been with him when he died.

  When they arrived back in Tioga, the rest of the siblings had shown up. They passed the time by sitting around and reminiscing, and the out-of-towners teased Doug for being such a homebody, since he had, once again, moved back in with their mother. It infuriated Karla. Her gentle brother, who had borne so much of their father’s abuse, had still gone to Moe’s bedside, supporting Gail in these final days. So what if he still lived in Tioga? Who were they to judge him?

  A year earlier, during a rough patch in her marriage, Karla had gone to see a counselor, who asked her to write down some good memories of her childhood and bring it in the following week. Karla couldn’t remember any; it was as though they’d all been wiped clean.

  As she sat in her mother’s house, preparing for the funeral, Karla leafed through some old photo albums with her siblings. There were the memories she’d forgotten: Moe’s brother, their uncle Jerry, who came to live with them. The garden hose that Brian had used to chase their mother through the house. The dances, the holidays. Her anger started to dissipate.

  As they thumbed through the pages, she let the rekindled joy of those happier moments seep back in. She looked around at her siblings, and she felt the counterweight of their collective resentment against their late father start to ease up, ever so slightly. They were the only ones who knew just how bad it had been, how terrifying he could be. They had survived him together; it was a bond that sustained them. Now that they were at the end of that road, Karla felt, for the first time, how strong they actually had become.