As Savannah grew, Chelsey took her to see her grandma Gail almost daily. And gradually, Gail found a reason to get out of bed.
• • •
Just two blocks from Gail’s house, Jennifer had set up an apartment in her father’s basement. She cooked for him sometimes and made sure he took his medication. She found a job in a group home, and she settled back into the familiar routine of Tioga. The family was beginning to reorder itself again.
But then the relative calm of Doug’s post-diagnosis life took a hairpin turn in March 2008, when a large pipe struck him in the face on the job.
With his face cut and his eyes swollen shut, Doug briefly lost consciousness. A supervisor took him to the hospital in Tioga, where he was loaded into an ambulance and taken to Minot.
Jennifer was in Minot with a client from the group home when it happened; her grandma Gail called her, hysterical. All Gail could say, over and over, was: “He was so handsome.”
A surgeon reconstructed his face with the help of thirteen plates and thirty-five screws to repair the damage wrought by the pipe, but from then on, he would suffer repeated bouts of reactive airway disease—an asthma-like condition in which the airways temporarily narrow—and pneumonia, sometimes serious enough to hospitalize him for days at a time in the harsh North Dakota winters. The next time he went to Pittsburgh for his research visit, his results showed his cognitive decline had worsened. The team there recommended that he leave his job.
• • •
Workaholic that he was, once Doug stopped being an oil man, he became much harder for Jennifer to live with. He couldn’t get the hang of operating his electric shaver or his cell phone. Once, when he asked Jennifer to help him figure out the phone, he was completely naked, and as unaware of that fact as a toddler.
She worried about Doug; she was working two jobs now, one in an office and one as a bartender. Even though she left the group-home position so she could stay around Tioga to take care of him, she wasn’t home much. Doug didn’t know how to cook, even in a microwave, so he ate three meals a day with Gail, who sighed when she talked about their daily routine, like a young mother whose patience is tested by a preschooler. Brian was in the nursing home in Minot, while Dean was still living near Grand Forks, on the other side of the state, close to Karla.
The days were long for Doug and Gail, and she sought out things for him to do. “Sometimes I put him to work vacuuming,” she said. Like Karla, she often felt alone. Pat died that same year, at sixty-three; it was as though Gail’s life were circling back to the early days of her marriage, when Wanda died, leaving behind a disjointed family that could not put itself back together again.
Doug’s childhood best friend, Gary Anderson, had gotten married and moved back to Tioga. Like Gail, Gary searched for ways to occupy his friend. Doug helped him move into a new house, with Gary careful to back him up while he carried things upstairs. Doug—who had once been such a graceful swimmer and an accomplished athlete—was struggling with his balance, a common problem for Alzheimer’s patients. But Gary was subtle, not wanting to spoil the sense of normalcy. When Gary worked one of his construction jobs, he picked Doug up each day and brought him along. Doug sat in a chair, and Gary and the rest of the crew told him he was supervising.
Though Doug didn’t drive much anymore and never left Tioga, he began rolling his truck through stop signs; the family worried that he might hurt somebody. Since Karla held power of attorney for her brother, she called a doctor, filled out some paperwork, and arranged to have Doug’s license revoked. He was incensed, but she recognized that it was necessary.
Doug’s crying tore at Gail, who suggested that perhaps Karla give Doug his license back; Karla refused. She was beginning to feel like the Grim Reaper; whenever she made the cross-state drive from Fargo to Tioga, she had the sense that everyone was waiting for the other shoe to drop. But Karla realized that she could be more objective about her siblings’ decline than could Gail, who would do anything to smooth over a bad situation for them. Karla had to be their reality check, and she did not back down from that role, even when it meant upsetting the people she loved.
“It seems like I’m always the bearer of bad news. When I come, I think they get scared of what’s going to happen, because they know,” she said. “I think my mother’s even getting scared of me.”
But there was no doubt that she was effective. When she came home, things got done. She was getting more practiced at taking care of the ugly tasks, which relieved other family members of those difficult burdens. It made her feel useful, but more than that, she believed it was her moral obligation, a kind of penance for having escaped the disease.
• • •
After Lori’s diagnosis, Karla was ready to swing into action again. She already handled the legal affairs of Brian, Jamie, and Doug, and she lived close enough to Deb and Dean that she was able to keep an eye on them, helping out if they needed her. Only Lori was far away. She called Steve.
He was in the car when she reached him on his cell phone. Karla cut right to the chase: “When are you going to divorce Lori?” she asked. “When you do, she can come back home to North Dakota, where we can take care of her.”
Within the DeMoe family dynamics, Steve had long been an outsider. Though he and Lori attended family reunions and stayed in touch, and their daughters were close with their cousins, there was no changing the fact that he’d been the man who took Lori away, and a subtle resentment lingered between him and her siblings. Though he and Karla were cordial, their differences would become apparent in their struggle over what was best for the woman they both loved.
To his credit, he set aside whatever immediate angry response he might have had to Karla’s suggestion. Instead, he told her: “The line’s bad. I’ll have to call you back when I get home.”
Hours later, she called him.
“We never finished our conversation!” she said.
“Karla, as far as I’m concerned, we never had that conversation,” Steve said. They never discussed it again, and remained on polite terms, but Karla regretted having crossed that line, even though she’d intended to help her sister. She had only wanted to be practical. It was chilling, how practical the disease could make you become.
• • •
Dean hated visiting Brian. When they drove back home from Tioga, Deb would often suggest that they stop in Minot; it was on the way. It was hard to see his oldest brother so helpless, especially when Dean thought of what it might predict for his own future. Worse, the family was beginning to suspect that the nursing home was not giving Brian the care he needed. He was sleeping so much now; when Deb visited, the staff would tell her Brian had just eaten, but he didn’t seem as though he’d been awake long enough for that to be true.
During one visit, Dean and Deb walked into Brian’s room and found him lying in his own feces. Furious and humiliated, Dean removed his brother’s diaper and changed him.
Once they got home, he sat on the edge of the bed and said, “Deb, you try wiping your brother’s ass!” before breaking into angry sobs.
Deb just held him, as she’d once held Tyler, and they sat on the end of the bed for an hour, talking.
Deb’s father, ever the insurance man, offered some practical advice: Get coverage for when Dean’s ready for a nursing home. It was the same advice Steve McIntyre took before Lori agreed to learn her diagnosis. But Dean wanted no part of that future. He didn’t even want to take any medication for his symptoms. Brian took Aricept and Namenda, another drug that was supposed to temporarily alleviate symptoms. Neither he nor Doug seemed to benefit from the drugs, and they tore up their stomachs. The hell with that, Dean thought. He planned to meet his fate dosed with nothing more than cigarettes, Mountain Dew, and whiskey. Anything else was just lining the pockets of pharmaceutical companies, the same ones who had paid people like Trey Sunderland thousands of dollars to promote a drug that had made no appreciable difference for the DeMoes.
Nor did he want to
wind up in a nursing home, lying in his own waste.
“Don’t let me get like that,” he told Deb. “When I get to that point, I’d rather not be around.”
The entire conversation rattled Deb deeply. She couldn’t stop thinking about it, so the next time they went to Pittsburgh, she brought it up to Bill Klunk, telling him what Dean had said. The whole direction of that conversation was making her uncomfortable. She was a Christian and didn’t share Dean’s fatalistic views.
Dean asked his closest friend, Monte Olson, for the same favor: Before I get bad enough to go into a nursing home, kill me. For Monte, who would do anything for a man he considered a brother, it was an impossible request—but it is a fairly common one among Alzheimer’s patients, particularly those who have witnessed another family member’s decline and degradation. In fact, it’s the very reason tests predicting the likelihood of Alzheimer’s are so rarely permitted outside of research studies; until a treatment is available, the knowledge holds too much lethal potential. Even some research subjects, such as the paisa in Colombia, are denied access to that knowledge.
But with science’s increased ability to predict Alzheimer’s—whether through the genetic testing of ApoE alleles or imaging amyloid with PiB—comes a new debate among medical ethicists. Is suicide a rational response to a positive diagnosis, especially when—as is the case for people without mutations—there is still a margin of error?
“The looming prospect of identity annihilation, to the extent that it exists, may give pre-demented persons further weighty reasons to commit preemptive suicide,” wrote the associate editor of the Journal of Medical Ethics.
Such ethical questions extend to other forms of dementia, too. In 2015, Susan Williams, widow of actor Robin Williams, revealed that her husband’s suicide the year before had been prompted by Lewy body dementia, a disease that can cause Alzheimer’s-like symptoms but is associated with a different kind of protein.
Unlike other terminal diseases, such as cancer, dementia raises a specific legal dilemma: In states that permit assisted suicide for the terminally ill, the patient must demonstrate the ability to make rational decisions. Once an Alzheimer’s patient reaches later stages, meeting that requirement becomes impossible.
To Deb DeMoe, Klunk suggested a therapeutic lie. “Promise him that you’ll do as he asks,” Klunk advised her, “give him the peace of mind. When the time comes to make good on your word, he’ll never remember that he wanted you to do it. And in the end, the words you said today won’t matter.”
Dr. Klunk’s advice would echo back to Deb in the coming years, as Alzheimer’s finally began to worm its way into her relationship with Dean. When Dean began to repeat himself, or forget details that she’d told him, Deb would get frustrated and remind him: I already told you that several times.
Klunk told her to stop. There was no scorekeeper in their house, keeping track of who was right. There was nothing to gain by reminding Dean of what he’d lost.
“You’re going to have to be wrong a lot, Deb,” he said.
And Gail, veteran of many such conversations, agreed.
“Gail said that was hard: the patience you need to be wrong,” Deb said. “It’s kind of like—and this sounds terrible—but it’s almost like a slow suicide. You don’t take your own life, but it’s taken so rapidly from you.”
• • •
In the waning months of 2010, Brian’s decline seemed to accelerate. Nobody in the family lived close enough to Minot to monitor his care, but when they did check in on him, they were alarmed by what they saw. He always seemed to be asleep, his eyes shut and his mouth half-open, like a man who had dozed off in front of the TV. A woman who was in the home visiting her husband reported to the DeMoes that Brian seemed to have an infection on his arm. When family members called, the nursing home staff insisted they were treating him, but the family had no way to verify that.
Karla asked for hospice care, but the nursing home ignored her, saying he wasn’t ready yet. She wanted to spare Brian the same misery in his final days that Moe had endured, but she didn’t know how to fight the system.
About a week after she heard about the infected wound on Brian’s arm, Karla answered another call from the nursing home: They wanted permission to bring Brian to a hospital to treat him for pneumonia. As a matter of fact, the nursing home employee told her, he might not survive.
Immediately, Karla dropped everything and went to Minot to see her brother. She was met by her best friend, Roxanne, and by Dean’s elder daughter, Lindsey.
At the hospital, the doctor told her Brian should have been in hospice care, which infuriated Karla. He was placed on oxygen and given morphine, and the hospice promised to send someone to pick him up the next day.
But by the next morning, Brian’s condition had worsened. The doctor offered them the option of taking him off oxygen, explaining that it would be the end; Gail had arrived, and the family consented.
She gathered her son into her arms for the final time: her dearest boy, who looked so much like his father. All the color drained out of Brian, and less than a minute later, he died. He was fifty-four years old, four years younger than his father had been when he died two decades earlier.
• • •
The death of her father prompted Kassie to begin rethinking her decision to remain ignorant of her status. Four months after Brian was buried, she joined her family on the annual research trek to Pittsburgh and allowed the nurses to draw her blood.
She told the family she had no intention of finding out the results, and that she was just getting tested to contribute to the research. It was a lie. She just didn’t want to burden her grandma Gail if the news turned out to be bad.
Her husband, Frankie, didn’t want her to get tested. He had watched his father-in-law’s decline, and he knew the genetic risk Kassie carried—and the potential that she could pass the mutation along to their daughters. None of that diminished his love for her or scared him away, and he had seen the burden that knowledge of a positive diagnosis could bring by watching Doug, Dean, and Jamie.
But with motherhood, Kassie was increasingly worried about her children. So when she insisted on learning her status, Frankie prepared himself for the worst.
Time passed; nobody called. Finally, Kassie phoned the research coordinator and asked when she could set an appointment to learn the test results. The coordinator promised to have Dr. Klunk call her back to schedule a review.
Kassie waited some more. The uncertainty was killing her; should she read anything into how long it had taken them to get back to her? She tried to make peace with it, to believe that it was part of God’s plan.
Then the phone rang; it was Klunk. She was expecting him to schedule an in-person visit, but in his excitement, he blurted out the news: She did not have the mutation. She was free, and so were her two little girls.
“We’ve cleared three people today,” he said, and his joy was unmistakable.
When Frankie came home, she told him: “I have some good news and some bad news to tell you.”
“OK . . . ,” he said.
Kassie smiled her million-dollar smile.
“The good news is: I don’t have Alzheimer’s,” she said. “The bad news is you have to live with me the rest of your life.”
Eighteen
SAFE HAVENS
A YEAR AFTER Brian’s death, a few of Dean’s old friends from Tioga called him with a proposition: Had he ever given any thought to coming home and working in the oil fields?
Owing to a combination of technological advancement and the country’s never-ending thirst for energy sources, the western half of North Dakota—which had been drilling oil since Gail and Moe were newlyweds—was undergoing a boom such as the state had never seen, and Tioga was at its epicenter.
For decades, oil companies had known this twenty-five-thousand-square-mile reservoir of oil existed under the Bakken Formation, the oil-rich spread of rock stretching under parts of North Dakota, Montana, Saska
tchewan, and Manitoba. The problem was how to extract it in a cost-effective way. The solution was hydraulic fracturing, or fracking, a technique which forces a solution of water, sand, and chemicals into the rock at high pressures, cracking it and allowing the oil to escape through a well. As the technique was perfected, and oil prices rose, the stage was set for a black gold rush.
In 2001, less than 2 percent of North Dakota’s oil came from the Bakken; in 2011, more than 80 percent of it did. Suddenly, North Dakota found itself compared to other powerhouse energy states, including Alaska, California, and Texas.
The boom could not have had better timing for Dean. It was nothing for a laborer to pull down $100,000 a year; for a guy like Dean, who was known for being a hard and meticulous worker, the opportunities were plentiful. And knowing that his working days were numbered, he wanted to do whatever he could to create financial stability for his family.
Returning to the oil fields meant being separated from Deb and the kids during the week. The idea made him terribly nervous, and that was a feeling to which he was not accustomed. But he was forty-nine years old, fighting a degenerative brain disease. As with any health crisis, particularly one affecting the family breadwinner, Alzheimer’s disease can sap savings, causing financial problems from which families struggle to recover. By now, Tyler was enrolled at the University of North Dakota, and McKenna was in high school. Lindsey was finished with graduate school. Dean’s father had died at fifty-eight, his brother at fifty-four, and both were forced to stop working when they were close to Dean’s age. He took the job.
Because of his reputation for leadership, the oil company made him a tool pusher, a position that involved overseeing the rigs and supervising a crew. Oil hands liked to joke about how little tool pushers did; in the fields, it was a relatively cushy job. But Dean could never be content with such a passive role. Instead, he set about learning the job of every man on his crew, so he would know whether they were working as hard as they could. Once he learned it, he’d often embarrass a slacker by jumping in and doing the task himself. Though he hadn’t worked in the oil fields since 1989, opting instead to work for an asbestos removal company, he became the best tool pusher some of the company’s men had ever seen.
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