The Inheritance

by Niki Kapsambelis

  • • •

  On Saturday, Dean headed to the other side of the state to spend the long holiday weekend at home with Deb and his kids, a rare respite from the relentless work of the oil fields. As he was leaving the house, Gail asked her son to bring her back one of the ice cream cakes she loved.

  Dean shook his head; his house was in Thompson, close to three hundred miles away. How his mother expected him to bring her back an ice cream cake was beyond him. In a cooler, she suggested; he banged out the door and hopped into his truck to make the long drive.

  Gail offered to babysit six-year-old Savannah overnight for Chelsey and Jamie that weekend, an unusually busy one for the young family. Gail suggested that she could keep Savannah until after church on Sunday morning. Chelsey hesitated.

  “It’s not that I didn’t really want her to be with Gail, it’s just that I was afraid something could happen,” she recalled later. Gail’s heart was acting up, and Chelsey was always nagging her to keep her nitroglycerin pills with her at all times, to derail a heart attack if she felt one coming on.

  But Savannah did love her grandma. And Tioga was a small town, with Gail one of its most beloved residents. If anything happened, neighbors in any direction would drop everything and come to help. Chelsey decided on a compromise, figuring she’d retrieve Savannah late Saturday night.

  She pulled in front of the DeMoe family house on North Hanson Street around midnight. Gail—always a night owl—was wide awake. She urged Chelsey not to disturb Savannah, who had fallen asleep. Instead, the two women—separated by five decades in age but united by a sincere mutual affection—sat up and talked until the wee hours of the morning. They discussed old boyfriends, like girls at a slumber party. Gail pulled out her collection of love letters and they read them and laughed. And then, for no real reason, she tied one of her own baby shoes to a heart-shaped wreath on the wall.

  At 2:00 a.m., Chelsey—who was tired from her drive—checked on Savannah.

  “Just leave her, just leave her,” Gail insisted. They’d meet after church the next morning and put flowers on Moe’s and Brian’s graves for Memorial Day. Chelsey already had the fresh blooms in her car. Gail chattered away as she followed Chelsey out the door.

  “Make sure you call me!” she reminded Chelsey.

  “It was the best I’ve seen her,” Chelsey said. “She was just so happy, and so full of energy.”

  • • •

  The next morning, Gail swapped out her purse before heading to St. Thomas Catholic Church, Savannah in tow. A bit of a wild streak had always run through Gail. She looked like the sweet Midwestern grandma that she was, who crocheted beautifully and baked the most heavenly dinner rolls from scratch. But she also liked to sip her Colorado Bulldogs on the back porch, and she devoured Fifty Shades of Grey, the racy novel that was titillating women all across the country. She told bawdy jokes with the best of them; but she was still, in her heart, a deeply faithful person. A half century of profound loss had not changed that.

  Halfway through that Sunday’s service, during the offering, Gail told Savannah she wasn’t well. They ducked outside to avoid disturbing the other worshippers.

  Gail took a few steps onto the concrete sidewalk outside the tan brick building and collapsed. Savannah, who had been dawdling with a book, dropped it and ran to her. Her grandma’s eyes looked enormous. Gail struggled to form words.

  Savannah screamed. She ran back to the church door, but it was too heavy for her to open. She pounded her small fists against it, crying for help, but the music from the organ drowned her out. She ran to the curb in front of the church, trying to flag somebody down. A man in a truck drove past, slowed down, then kept going. Savannah started screaming and beating on the door again. Finally, it opened.

  Chelsey Determan was at home, in her laundry room, when she heard someone at her door. By the time she got there to open it, whoever had knocked was gone; she leaned out and saw a woman tearing off around the corner.

  Then her phone rang. It was Gail’s longtime friend Pat Branesky. Gail had fallen at church, she said; she was at the hospital, and the situation was not looking good.

  Jamie took off immediately for the hospital; Chelsey went to find Savannah at the church.

  The little girl was terrified. Chelsey soothed her daughter and took her to her parents’ house, then left to meet Jamie at the hospital.

  “Grandma wouldn’t talk to me,” Savannah said.

  • • •

  When the word spread to Karla through friends from Tioga, she immediately called the hospital.

  “I need to tell you that your mother didn’t make it,” the doctor said gently. “She passed away before she even got to the hospital.”

  When she hung up the phone, Karla called Dean.

  “Mom’s gone,” Karla said, and they both started crying.

  An hour later, Dean DeMoe was back on the road to Tioga, his little dog, Rookie, by his side. A hundred thoughts immediately converged on his brain: He should have been there. He shouldn’t have come back home. Dean never paid much attention to the fact that he had Alzheimer’s disease; it was as though he believed, as his friend Monte had suggested, that he could ignore it into submission. But he did carry a healthy fear of something bad happening to his mother in his absence, and now that fear had been realized: She had suffered a major heart attack. He wished he had just brought her the ice cream cake, like she’d wanted.

  • • •

  When Lori arrived at her mother’s house, Deb was the first person she saw. She walked in and gave her sister-in-law a big bear hug, then said: “Hey, where’s Mom?”

  Over Lori’s shoulder, Deb mouthed to Steve: You didn’t tell her?

  Steve nodded his head vehemently: Yes; he’d told her. He’d told her fifteen times. Karla had also told her, over the phone. She couldn’t remember. Before they got to the house, she’d tried to buy a postcard for her mother.

  Deb pulled herself together, willing herself into teacher mode.

  “She’s not here,” she told Lori.

  “Where is she?”

  “Well, she . . . died,” Deb said finally.

  Shocked, Lori looked around. Tears filled her eyes. The grief was fresh, the devastation new; the disconnect between what was unfolding and what she remembered was overwhelming.

  “Somebody talk to me!” she said, frustrated.

  Gently, Karla led her sister to Gail’s bedroom at the back of the house and closed the door. As they had often done in times of crisis, the two sisters lay down on their mother’s bed, and once more, Karla explained.

  • • •

  Throughout Memorial Day weekend, the family reunited, streaming into Tioga from all points. With few other places to stay, most of them ended up sleeping at Gail’s. For a week, it seemed like old times: People crowded end to end in the DeMoe homestead, drinking, laughing, and occasionally squabbling.

  On the sidewalk outside the church, on the spot where Gail had fallen, her grandchildren and great-grandchildren picked dandelions and molded them into a heart. Then children and adults alike gathered in a circle, holding hands, heads bowed, to say a prayer.

  The rain that had been threatening to fall all weekend ripped loose from the sky, washing down in unforgiving sheets. The day of the funeral, mourners carried umbrellas out to the cemetery and huddled under a tent erected near the gravesite, but the rain pelted them sideways: a soaking, sheeting, relentless rain. Gail’s grandsons bore her casket to the grave, along with a family friend and Kassie’s husband, Frankie Rose.

  They buried Gail, in the rain, alongside her husband and firstborn son.

  • • •

  The family stayed to sort out loose ends and mourn their matriarch as only the DeMoes would. As they divided up her clothes for people to take home or donate, somebody got the idea to start wearing them. Before long, the entire family—men and women alike—were swathed in Gail’s wardrobe; Dean wrapped himself in a multicolored scarf, Lori donned a red fl
oppy hat, Lindsey a gold lamé jacket, Frankie an animal-print coat. When everyone was dressed to their satisfaction, they headed uptown, where they promptly began drinking and dancing in her memory.

  Tioga responded in kind, buying them rounds of shots. It was the best family reunion Robin McIntyre had ever attended; as she danced her way across the floor, one of the oil-boom newcomers stopped her.

  “That’s some celebration!” he said. “What’s the occasion?”

  “My grandma died!” she said, and kept dancing.

  Back at the house, Savannah played with her cousin Claire, Lori’s granddaughter.

  “Where did you sleep last night?” Claire asked Savannah.

  “In Grandma Gail’s room.”

  “But Grandma Gail died,” Claire protested.

  “Yeah, her heart was broken,” Savannah agreed.

  “Maybe it came unplugged,” Claire offered.

  When a friend from church returned Gail’s purse, all it contained was a wallet and a church bulletin. Her other purse remained on her nightstand; behind it were the nitroglycerin pills that Chelsey Determan was always nudging her to remember.

  A week later, when Karla was driving home to Fargo, she stopped near Jamestown, where her father had gone that terrible summer of 1978. She began sobbing as she had never done before, and she called her sister-in-law, Deb.

  “I just want to call Mom right now,” she wept. “I just want to talk to her, and I can’t.”

  • • •

  In the months since Gail’s death, the ups and downs of her extended family’s life continued. In North Dakota, as McKenna DeMoe neared the end of her senior year of high school and Lindsey, Dean’s older daughter, put the finishing touches on her wedding, Deb was still commuting to Tioga on weekends. Dean’s brain scans showed no changes that year, and he went out to celebrate with Tyler; but privately, some of his family members were worried. He was working too hard, as he always had. His temper was flaring sometimes, too—like when Kassie and Chelsey Determan took some of Gail’s Christmas decorations to hang around Doug’s and Lori’s rooms in the nursing home. Dean came home from work after a particularly hard day and saw them in the driveway, laughing and chattering as they hauled out the boxes.

  “Who said you could take this stuff?” he demanded. In fact, it had been Dean himself who’d said they could. He just didn’t remember.

  The girls were surprised, not just by the fact that Dean had forgotten, but by the idea that he even minded. He was constantly worried now that people were taking things from Gail’s house—tchotchkes that he’d always derided as junk.

  “Who cares?” Karla told him. “We want them to take it.”

  But now that Gail was gone, those little trinkets—her bits of junk, her sentimental sayings, even her mountains of holiday decorations—were like little pieces of her being carted away. Dean wanted to hold on to her memory for as long as he possibly could.

  In May 2014, at Karla’s urging and with Deb’s support, Dean began participating in the anti-amyloid drug trial for the DIAN study in St. Louis. The following year, on May 27, 2015, he became the first person in the study to be scanned for the presence of tau tangles, though the study did not disclose his results to him.

  After the tau scan, he and Deb planned to visit St. Louis’s Gateway Arch. But a nurse warned him that he was shedding so much radiation that he might get kicked out by security. Dean’s eyes lit up.

  “Let’s go!” he told Deb. It would be like old times, when he got thrown out of places for breaking the rules.

  • • •

  By early 2016, the DIAN trial had scanned fifty brains for tau using T807—the same tracer that Reisa Sperling and Paul Aisen were using in their A4 study for late-onset Alzheimer’s. The trial hoped to expand to additional countries, and Bateman said he hoped eventually to add anti-tau drugs to the clinical trials, though their development was a few years behind that of anti-amyloid medications.

  “The current thinking is you need the cortex loaded with amyloid to get to the point where you unleash the tau-and-tangle cascade,” said Pierre Tariot, who designed the Banner Institute’s drug trials in the Colombian paisa. “It’s the two, in series, that lead to the downstream effects, including brain cell dysfunction and death.”

  The Banner trial in Colombia was also scanning for tau, though unlike DIAN, it did not plan to introduce anti-tau drugs but rather stay only with crenezumab, which targets amyloid, throughout the duration of the study.

  “The hope is by intervening with amyloid-clearing agents before the tangle cluster gets unleashed, [we] will delay or prevent it altogether,” Tariot explained.

  Ten months after Gail’s death, a research team reported a discovery that could prove to be the long-sought link between mutation carriers and late-onset Alzheimer’s patients. Led by Howard Federoff, executive dean of Georgetown University’s School of Medicine, the team announced that it had developed a blood test that checked for unusually low levels of ten specific fats, and could predict, with 90 percent accuracy, whether a seemingly healthy person would develop Alzheimer’s.

  Because the test identified the disease risk before people developed symptoms, scientists believed they now had a way to know who might benefit from an early-intervention drug, if one succeeded in any of the trials that were under way.

  While acknowledging that his test predated a proven preventative treatment for the disease, Federoff said he himself would still want to know if he was going to get it, so he could tie up loose ends in his life. He knew others might feel differently.

  The issue of whether and how to tell people their odds of developing Alzheimer’s was becoming more pressing as science inched closer to a viable treatment. In December 2015, the Banner Institute launched GeneMatch, a program that offered genetic testing for ApoE4 to people from the general public between fifty-five and seventy-five years old. After submitting a DNA sample from a cheek swab, participants would be matched to study opportunities. Some of those studies would allow people to learn their status through genetic counseling and would then follow them for a year to observe how the news impacted people psychologically.

  Tariot and Reiman said the GeneMatch results would help providers determine the best way to disclose such sensitive news, particularly since ApoE4 testing is expected to become much more widespread if a treatment is found.

  • • •

  In March 2015, after much badgering by Karla, Jamie DeMoe underwent a week of scans and cognitive testing in Pittsburgh before receiving his first shot as part of the DIAN clinical trial. In keeping with study protocol, he would not know whether he received an active drug or a placebo.

  Jamie had been through a trying year. The oil boom was over, and with prices falling, he had endured several layoffs in the oil field. He was now working in a plant that provided water for fracking. It was a boring job, but at least he was inside, and he got a respite from the hard physical labor of earlier years.

  He arrived in Pittsburgh worried and frazzled by a lack of sleep, but as the week progressed, he grew more relaxed. On his last night, hours after receiving his first injection, he went out to dinner with Chelsey. They sat at the bar waiting for their table, and when they were called, he forgot his jacket; Chelsey gently reminded him.

  On their way home to the hotel that night, he stopped in his tracks.

  “I think I left my jacket back at the restaurant,” he said. Chelsey realized he was right, and they returned for it. He smiled broadly. He had remembered.

  • • •

  That same week, at a conference in Nice, France, pharmaceutical company Biogen announced that it was expanding its human clinical trials of the anti-amyloid drug aducanumab after a small study had yielded promising results in older patients.

  The trial enrolled 166 people, most in their early seventies, whose diagnosis was confirmed when their brain scans—using a derivative of Bill Klunk’s and Chet Mathis’s PiB—revealed amyloid buildup. Clinically, about 60 percent s
howed mild symptoms, and two-thirds of them carried at least one ApoE4 allele.

  After a year, the control group’s amyloid buildup rose slightly, while people in all groups that received the drug experienced a drop, the sharpest of which occurred in the people taking the highest dose. In cognitive testing, the control group’s score fell three points after a year, while the group in the highest drug dosage dropped by less than one point and seemed to stabilize.

  But there were side effects, too, especially at the highest doses: specifically, vasogenic edema, or ARIA, the same fluid on the brain which had plagued other anti-amyloid drugs. In a few of the patients, this caused headaches, confusion, and visual disturbances, but those symptoms usually resolved within a month, according to the Biogen representative who presented the findings.

  Klunk and Tariot both expressed cautious enthusiasm for the findings, but were careful to add that the study was very small and that previous drugs had failed in the past when they moved to larger clinical trials. However, the results also offered hope that they were on the right track, and that clearing amyloid would help stave off cognitive decline.

  “A win for one agent is likely a win for the others that are viable,” Tariot said.

  Paul Aisen, whose A4 study was about halfway to its goal of enrolling a thousand people, was also pleased.

  “It’s preliminary, but I think very exciting,” he said. “That’s made me think we want to get anti-amyloid therapy to people as early as possible, but it looks like it may be helpful even at the symptomatic stage.”

  Days later, the Mayo Clinic published findings that reminded the field that tau was still very much in play. The NIH-funded study, which looked at thirty-six hundred brains postmortem, identified tau as the primary driver behind memory loss in Alzheimer’s disease, though it did not rule out the possibility that amyloid played a role.