Everyone at the party wore cowboy boots. Little Claire, the life of the party, wore a yellow University of Wyoming T-shirt with the motto Pistol Pete is my homeboy.
It had been a dry summer, and the view of the mountains on the drive into Laramie had been hazy from the smoke of fires fanned by warm winds. When rain finally rolled in that night, they could see it coming across a vast canvas of sky, terrible and beautiful, supernatural, the clouds godlike in their majesty. Though you could see the rain advancing across the endless horizon, miles in the distance, it still might not fall. In a drought, there were no guarantees.
But the rain did come, in warm, fat drops that spilled out of the sky and into Claire’s face and hair when she ran into the night. As they fell, she began dancing, her cowboy boots stomping on the pavement. She threw her arms up in the air, as if to celebrate the arrival of the fire’s long-awaited cure.
Twenty-Eight
COMING HOME
FOR ALL THE pragmatism Steve and Lori McIntyre had demonstrated when talking about how they would handle her disease progression, little could have prepared them for their final days living under the same roof.
In the summer of 2013—just a year after Lori appeared to be holding her own in her tests—their middle daughter, Robin McIntyre, moved from Denver back to Laramie to help take care of her mother. During just the past few months, Lori’s mood swings had begun to careen in hairpin turns at the slightest triggers. When she disagreed with someone over the phone, she hung up on them. When she was upset, she locked herself in the bathroom. She stopped finding the words to express her thoughts, and she could no longer write them down, either—the art of paper and pencil had disappeared into the constellation of amyloid and tau proteins scattered across her brain.
Steve wanted to hire a caregiver to come to the house when he was working and Robin couldn’t stop by. Lori wouldn’t hear of it; she didn’t need a babysitter, she said. But she began getting up in the middle of the night, trying to figure out where she was. If she decided to go wandering outside when Steve was asleep, she could very easily die. They were in a city by Wyoming standards, but it was a city on the outskirts of a vast mountain range, rich with wildlife; at night, they could hear the coyotes gathering close to their house.
Steve would come home to find that Lori had unloaded all the contents of their refrigerator and freezer. Robin drove to her parents’ house to find pans on the stove, with Lori nowhere to be found. Thinking her mother had locked herself in the bathroom again, Robin decided to wait. But after a while, when Lori didn’t emerge, she checked the bathroom and discovered that it was empty. Robin began searching; eventually, she found her mother sitting in the craft room next to Steve’s workshop. Lori was holding some kind of document, weeping as she read it.
It was Galen DeMoe’s autopsy report.
“I didn’t know my dad had Alzheimer’s,” she said.
That fall, when Steve had to be hospitalized with pancreatitis, he reached a decision. He was simply too sick to take care of Lori, and to ensure her safety. There would not be another Christmas together as a family. He would check out of the hospital and cash in his remaining vacation time to take care of the necessary arrangements. Lori was going into assisted living.
At first, he hoped to convince her to check into a new facility in Laramie, where she could see her husband and daughters as often as they liked. It seemed more like a complex of studio apartments than a nursing home, but Lori was not impressed. She referred to it as the “loony bin” and flatly refused to go.
Robin took her mother there under the pretense that Lori could volunteer. It was the kind of work she’d always enjoyed, but Lori refused.
“Nope,” she told her daughter, unconvinced. “You’re trying to drop me off.”
The impasse was as excruciating as it was untenable. Nobody wanted Lori to end up like her father or her uncle Jerry, hauled away against her will, baffled and terrified. In desperation, Robin turned to her aunt Karla, veteran of Brian’s and Doug’s nursing-home transitions.
It was Karla who first suggested the idea that Lori might be better off in Tioga than in Laramie. Perhaps the memory of her frosty conversation with Steve after Lori’s diagnosis was still too fresh; perhaps everyone remembered how desperate Lori had been, in her youth, to leave her hometown. Either way, at first, the idea was not universally embraced. But in time, most of the McIntyres began to see some merit in the plan.
Doug was already at the Tioga nursing home, and the family could persuade her that she was checking in to participate in Alzheimer’s research and help her brother do the same. Her siblings, nieces, and nephews could see her every day. Moreover, the home was staffed by townspeople they’d known all their lives. They’d watch out for Lori, just as they did Doug.
Because Lori knew her family was participating in the DIAN study’s drug trials, it was a credible story. Karla recommended a two-pronged approach: First, Robin would begin talking about the research with her mother, planting a seed. Later, Karla would call Lori and coincidentally discuss the same research.
It worked, just as Karla had predicted. In their phone call, Karla excitedly told her sister, “They’re talking about doing a drug trial in Tioga, and Doug’s going to be doing it! We’ve got to get you in on it.”
She embroidered on the lie, telling Lori that Jamie and Dean weren’t eligible to participate because they were still working. But if Lori came to Tioga for Thanksgiving, Karla suggested, she could stay a little longer to contribute to the study.
Lori, lifelong nurturer and fearless protector, agreed to come. Steve was out of the hospital, so she felt she could safely leave him behind in Wyoming and help the research, which had always meant so much to her.
“Doug is scared. I’ll show him how to do it,” she said. She asked Karla to explain to Steve the plan she thought they’d hatched together.
To an outsider, such deceptions might seem dishonest, even cruel; but to the families of Alzheimer’s patients, they become a necessity. Truth is just another casualty of the disease. Try to ease an Alzheimer’s patient into a nursing home, and you could be confirming the abandonment they most fear. Viewed in that context, a white lie that convinces the person to move to a safer environment with a minimum of commotion can be seen as a kindness. But the guilt can still linger.
“No matter what decisions you make, you never feel good about them. You just get that awful feeling that doesn’t go away,” Karla said.
But she added: “We’re only doing the best we can with what we know.”
• • •
The day after Thanksgiving 2013, the McIntyre girls walked their mother to the front door of the nursing home in Tioga. Steve had driven Lori up the previous week, then returned home before the holiday. After having been off so long with his illness, he had to return to work, and he didn’t want to risk upsetting her even more when he left. He had several invitations for Thanksgiving dinner. The house was so quiet with Lori gone.
It was important to Steve that his wife was comfortable and able to accept where she was. He remembered what one of the Pittsburgh doctors had told him: Although Lori had been valiantly hanging on to her mind for a long time, longer than her younger brother Doug, once the cognitive memory slips gears, it disappears quickly.
“We knew it was coming,” Steve said, not sure if he was relieved or depressed. “Now that it’s here, we’re facing the reality.”
Karla and the three McIntyre girls got Lori settled into her new bedroom, decorated with pictures from home. Before Karla left, she and Lori hugged.
“I am so lucky to have my girls and you,” Lori said.
“We’re gonna get this disease in the end,” said Karla. And they cried.
• • •
Within weeks, Lori had settled in. But by February, although friends and family visited her daily, Lori’s patience for being at the facility had just about disappeared. At one point, she packed her bags and announced that if Steve didn’t pick her
up, she would walk home.
Bill Klunk volunteered to help. They set up a video conference for Valentine’s Day, and Steve came to Tioga to be with her as she watched Klunk on the screen. He told her they were all proud of what she had done for Alzheimer’s research, and that while she was now going to live in the care facility permanently, her contributions would continue to help the field. She said she understood, but within half an hour, back in her room, she asked Steve when he was taking her home.
The next day, he took her for a walk around her old neighborhood.
“My mom lives around here somewhere,” Lori said.
He brought her back to the facility, told her good-bye, and told her he loved her.
I love you. Thanks for being my partner for 18 years.
—card from Lori to Steve on their eighteenth anniversary
Hope the next 18 are just as pleasurable.
—card from Steve to Lori on their eighteenth anniversary
There is a curious symmetry to Alzheimer’s in that it causes people to lose abilities roughly in reverse order to the time in which they acquired them. Executive functions disappear first; it’s the primary skills—walking, talking, and ultimately breathing and swallowing—that vanish at the very end. Lori’s life followed that arc, beginning and ending in the North Dakota town that forged her, repelled her, sent her hurtling into a life of exploration as untamed as her heart. As the path of that life began orbiting back to the small, to the familiar, she was pulled almost gravitationally toward Tioga.
And so it came to be that Lori DeMoe, who couldn’t wait to leave, came full circle in returning to her hometown.
Twenty-Nine
PALPABLE MOMENTUM
EIGHTEEN MONTHS BEFORE Lori moved into a nursing home, in May 2012, the Obama administration named Alzheimer’s disease “one of the most feared health conditions” and released a battle plan that set a lofty goal: finding a way to prevent and effectively treat the disease by 2025. With the announcement came a promise of $50 million in new research funding for fiscal year 2012, and another $80 million in fiscal year 2013.
It was a signal that at last, the disease had captured the public’s attention. The US economy simply could not bear the anticipated burden of caring for a generation of baby boomers afflicted with a prolonged, inconvenient, messy illness for which there was no meaningful treatment.
The first-ever National Alzheimer’s Plan enjoyed bipartisan support. Goals included finding any new genes that either predicted or protected against the disease. The plan also sought to boost enrollment in clinical trials and research, especially trials for the most promising drug interventions.
“The question is, can we really beat this disease?” said Randy Bateman, head of the drug trials for the Dominantly Inherited Alzheimer’s Network, in which the DeMoes were enrolled. “I expect real, dramatic changes in research and development will occur. . . . There will be a palpable change in what can be accomplished, and what will be accomplished.”
Though the price tag might seem high, advocates argued that it was money well spent: Science had won important battles in other diseases when money was invested in finding a cure. Prior to the creating of an Alzheimer’s plan, the National Institutes of Health spent about $500 million annually on Alzheimer’s, which affects 5.2 million Americans. By comparison, the NIH spends $3 billion a year on AIDS research, which affects about one-fifth as many people. Cancer research gets $6 billion, and heart disease gets $4 billion—and in all cases, that research has translated into better treatments.
Not funding Alzheimer’s research could actually prove to be more expensive to the public. The Alzheimer’s Association reported that in 2013, the direct costs to society of caring for Alzheimer’s patients would total about $203 billion, a figure that includes $142 billion in Medicare and Medicaid costs.
By 2025, the target date for a prevention, the number of Americans sixty-five and older with Alzheimer’s was expected to hit 7.1 million, and by 2050, it was projected to mushroom to 13.8 million, at a cost of $1.2 trillion. Economically, Alzheimer’s had the potential to deliver a crippling blow.
Bateman’s DIAN trial won a significant vote of confidence when the Alzheimer’s Association awarded the trial nearly $4.2 million in the form of a four-year research grant, the largest the association had ever bestowed. In October 2011, ten competing pharmaceutical and biotech companies formally agreed to jointly support the study with time, expertise, and money, even if their drugs were not those selected for the trials. That cooperation would prove to be the buoy that kept DIAN afloat when the faltering US economy caused the political climate to sour in 2012.
“If you had asked me five years ago what the odds were that different pharma companies would sign the same agreement to get these prevention trials going, I would have said it would be hard to get one to do it. I would have said it is impossible to get ten to do it. To me, that is a huge step,” Bateman told a reporter at the time. The companies were finally on board with an approach that, while unorthodox, could solve a crucial problem when competition failed to make an impact.
At a pretrial meeting, consultants told Bateman’s team that they’d never seen a more positive start to a clinical drug trial: It was well designed, and despite its complexities, all stakeholders had been remarkably supportive; it seemed as though everything was going to go off without a hitch. Bateman was riding high.
But the DIAN team had a significant scare at the end of 2012, when a combination of automatic tax hikes and deep spending cuts threatened to take effect on New Year’s Eve if Congress could not reach some sort of budget compromise. At stake was their NIH funding, which was crucial to their work.
• • •
On New Year’s Eve, while lawmakers in Washington debated, the DIAN clinical trial officially enrolled its first patient. In the wee hours of New Year’s Day, Congress reached the compromise that delayed the automatic cuts until March; by then, Randy Bateman’s team had enrolled ten participants and begun administering drugs; sites in Australia and Europe continued to move through their startup phases, and in North Dakota, Karla was urging Dean to enter the drug trial at DIAN’s headquarters in St. Louis instead of waiting for Pittsburgh to get online, a delay she feared would push him past his window of eligibility. Deb concurred, and Dean agreed to make the phone call.
Anticipating that the NIH would not be able to pay for even the majority of the study, Bateman created a backup plan. He began lining up private funding to close the gap created by the government shortfall. He knew there were supporters at the NIH who were pulling together the last of their remaining discretionary funds to try to at least partially fund the trial, but he recognized that it was a political battle. There was, after all, never a shortage of diseases that needed research dollars.
The notion that science could be so close to finding a meaningful treatment, yet lose its grasp to political bickering, frustrated him deeply.
“We’ve had Alzheimer’s for at least five thousand years, likely for as long as humans have been on the planet,” with no way to treat it, Bateman said. Now that they had a real shot at a breakthrough, success would require a monumental commitment from everybody involved.
And if competing drug companies and scientists could find a way to do it, he hoped politicians could, too.
• • •
Dr. Francis Collins, director of the NIH at the time of the budget cuts, announced that he was designating $40 million from his director’s budget for fiscal year 2013 to Alzheimer’s research. He also said the sense of momentum was “palpable.”
“It would be fair to say that eight to ten years ago, people were feeling a little frustrated, a little discouraged. It seemed as if progress was really slow,” he said. “Now, researchers in this field are energized because of a variety of new things that have come along, many of them in just the last couple of years, that give us a sense that we’re finally beginning to get a real handle on what causes this disease and what to do about it.
”
Thirty
TO THE MOON AND BACK
Take up our quarrel with the foe:
To you from failing hands we throw
The torch; be yours to hold it high.
—John McCrae, “In Flanders Fields”
AS MEMORIAL DAY weekend unfurled in 2013, Gail was beginning to feel more like her old self. On Friday evening, she spoke with her sister, Bobbie, for more than an hour. At times, the sisters had had their differences—as many do—but that evening, they chatted deep into the night.
Only a few weeks earlier, Bobbie had surprised Gail with a gift of $5,000, and her timing couldn’t have been more opportune. Gail was generous to a fault, and had never been a materially wealthy woman. Gail’s health problems were nagging her: a bad back, aches and pains, and as had been the case in recent years, her heart. The medications were expensive, so Karla had added calling Medicaid to her to-do list.
All her life, Gail had been a lively, upbeat woman. Now seventy-eight, she remained the family’s rock, a physically tiny woman whose courage and good humor had anchored them through decades of storms.
But that unity had come at a tremendous cost to the woman who provided it. Though antidepressants helped somewhat, those who knew her well—particularly Karla, her confidante—knew that she carefully hid a grief of immeasurable depth. It was Karla who remembered, when many did not, the nervous breakdowns that had landed Gail in the hospital.
Even though Dean stayed with Gail during his workweek, Karla worried that the big house was just too much for her. The cleaning lady Karla had hired was diagnosed with cancer and quit; they had trouble finding a replacement, because nobody wanted to work for such low wages when they could earn better money in the oil fields. But Gail would not hear of moving. She had a community in Tioga, and her house was still a family gathering point, still a place where her friends dropped in.
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