The Inheritance

by Niki Kapsambelis

  As a nurse, Robin Tjosvold had worked in settings ranging from delivery rooms to hospices. She gave the McIntyre girls a single piece of advice about their mother: Do whatever you can now to avoid regret later. She knew what she was talking about. When she was eighteen years old, a brain tumor had killed her father. She remembered how, in the end stages of his life, he’d asked her, “Do you feel sorry for me?”

  Even at that age, she knew the answer: No. She felt sorry for herself, and for the rest of her family, for the time they would not have with him.

  As she sat in a waiting room at the Alzheimer’s Disease Research Center at the University of Pittsburgh, Robin struggled to maintain her composure. Her experiences as a nurse had taught her to be detached, pragmatic. But this disease was so complex, and her friend—once so strong—was now so vulnerable. Robin was touched by how tirelessly Bill Klunk and his team were working. As she thought about the massive scope of the problem they were trying to solve, she was overcome.

  Finished with another round of tests, Lori walked into the waiting room and saw her friend’s tears. She wrapped her arms around Robin and let her weep. When it was over, Lori said, “I just forget so often what it must be like for you to see all of this.”

  Robin witnessed how uncharacteristically dependent Lori had grown on Steve, and how courageously he fought to take care of her even as she chafed at his efforts. Like most people who knew them, Robin was surprised at his dedication. Years earlier, before her symptoms worsened, Lori had confessed some of her fears about Steve to her friend.

  “I’m having a hard time trusting that he will be there for me. How’s he going to do this?” she asked. Her independence was one of the qualities he had always loved about her. When that was gone, would he view her differently? Would he still love her, or would she become a burden?

  “All you can do is trust that he keeps his promises,” Robin said.

  • • •

  Indeed, Steve had never been a patient man, never been a touchy-feely kind of guy. So seeing him take such painstaking care of Lori—fighting to hold his tongue when she complained that he hadn’t told her something, waiting out her inevitable meltdowns, reestablishing roots in Laramie to keep from disrupting her world—made his daughters love him even more fiercely. The Tioga relatives didn’t understand why he would not bring her back to North Dakota; but he knew, and their girls did, too: In her right mind, she would not have wanted that. He would fight to avoid that move for as long as possible.

  “He’s taking the whole thing like a champ. I never, in a million years, would have guessed that,” his daughter Jessica said.

  Jessica was Lori and Steve’s oldest child, but the one most like her father in personality—“we’re both kind of hard-asses” is how she put it. She asked him whether he might need a support group. No, he said; I’m not going to do that stuff. He confided to his friends, his family. Alzheimer’s support groups were for people his parents’ age. He thought for a while about keeping a journal, but he worried that he’d wind up writing something in it that he’d later regret, a permanent record of temporary frustration. So he kept his troubles mostly to himself.

  Immediately after her mother’s diagnosis, Jessica searched for a geneticist in Denver, where she was living, who could test her for the mutation. It was a more difficult task than she had anticipated.

  “Straight up, a ton of people said, ‘No. I don’t feel comfortable doing that,’ ” she said. It was the same dilemma with which Ken Kosik and Francisco Lopera wrestled in Colombia: Without a meaningful treatment for Alzheimer’s, such knowledge can be treacherous, triggering dangerous reactions in people, and many doctors were reluctant to be part of that process.

  Finally, a doctor at the University of Colorado agreed to run a blood test if she saw a genetic counselor. Jessica paid for the entire ordeal out of her own pocket. It was beyond her means financially, but emotionally, she couldn’t afford not knowing. Jessica believed in confronting problems head-on, and ambiguity would have driven her crazy. For twelve weeks, she waited on tenterhooks, until the result came back: She was free of the mutation.

  Nobody in her immediate family had ever died or been terminally ill before, at least not anyone she knew. She wanted to do something; sitting back and passively allowing the situation to unfold was simply not in her psyche. She began volunteering with the Alzheimer’s Association, dragging her friends along to events. She sat on a panel at the association’s annual educational seminar and spoke about her family. At one fund-raiser, she delivered an eight-minute speech in front of an audience of about five hundred people, curing in one fell swoop her fear of public speaking. She made plans, with her sister Robin, to write a play about Lori’s life.

  But as her mother declined, so did Jessica’s seemingly limitless kinetic energy.

  “She’s always been everybody’s mom. She’s in charge; she’s the boss,” Jessica said. It was unfathomable that her mother, the strongest, most fun-loving person she knew, would no longer be able to organize camping trips, fix electrical outlets, or listen to everyone’s problems. She was the center of their world.

  • • •

  To Steve, it wasn’t just the gradual loss of his wife that stung. It was also the gradual disappearance of their friends.

  In Pittsburgh, he noticed how Lori seemed to come alive with each new person she met; at home, she was bored to tears, unable to work. Steve had built her a craft room alongside his workshop, but it was filled with yarn, needlepoint, and scrapbooking supplies that she no longer knew how to use. When she tried to read a novel, the bookmark stayed stuck in the same spot for months, or went backward as she forgot earlier chapters and retraced her steps. She maintained subscriptions to Reader’s Digest and Good Housekeeping, but a single magazine looked like she had tried to read it for years. Once, she’d been able to whip through jigsaw puzzles in a day or two; now she had one that she had started at Christmas, and months later, she was still toiling away.

  Ironically, the woman who had mastered the art of multitasking had been relegated to spending most of her day in front of the television, feeding her sweet tooth with the candy that she hoarded. She was unable to remember that she was not hungry.

  When their dog died on Christmas Day in 2011, Steve tried to cheer her up with a new Labrador retriever puppy, but Lori became frustrated that the dog responded more to Steve than to her. When he came home after work in the evenings, he found wadded-up tissues, still damp from her tears, squirreled around the house.

  Some of her struggles were his alone to witness. When they were getting ready to go to Pittsburgh for a research visit, Steve suggested that they pack the night before, since they were scheduled to depart early the next morning. Lori said she was already packed, but her suitcase was empty, her clothes still hanging in the closet. All their lives, she had been the one who planned out their trips; now Steve tried to fill her shoes. Gently, he guided her into putting her clothes in the suitcase, just as Becky Vork had packed for Lori’s cousin Colleen.

  Again and again, she asked Steve: When are we leaving? With as much patience as he could summon, he answered: Early tomorrow morning. Finally, they finished, and Steve went out to his shop, attached to the garage, where he stored his own suitcase. When he returned, he found Lori locking doors, shutting off lights, and gathering her cell phone charger.

  “Honey, we’re not leaving until the morning,” Steve said quietly.

  She looked at him, crestfallen.

  “You confused me!” she said accusingly. And then she stormed into their bedroom and began sobbing.

  Steve gave her a moment, then went in to console her.

  “Maybe I didn’t tell ya,” he said. “We’re leaving in the morning.” And with that, she seemed to feel better. Just as Gail had told Deb, Steve had to find the patience to be wrong.

  Once a week, Lori did still drive to a coffee shop to meet with a group of girlfriends. She looked forward to it all week; it was her one regular diversion,
though it would soon have to end since she’d gotten in a car accident with her granddaughter, Claire, in the backseat.

  Lori believed she was still managing the household and that her moods hadn’t changed much. But Steve told the Pittsburgh research staff otherwise. He had taken over all the cooking. Instead of washing dishes, Lori put them back in the cupboard still dirty, forgetting to load the dishwasher. Instead of doing loads of laundry, she would wash two socks at a time, unable to recognize that the basket wasn’t full.

  A few months earlier, visiting Gail’s house in North Dakota—the very house where she’d grown up—she’d gotten up during the night to use the bathroom and become lost. And she became temperamental with Steve, exploding into outbursts. When they were on trips with extended family, she sometimes took other people’s belongings, stashing them in her suitcase.

  Her erratic behavior—which mirrored some of the symptoms her late cousin Dawn had exhibited—led Steve to think that the time was drawing near to move Lori into some kind of nursing home. He was still a few years away from retirement, and he worried about her safety at home alone when he was at work.

  Occasionally, some of their friends would call or send him an email, checking in to see how Lori was faring. Always, there was the same rote offer.

  “I find it kind of funny, or kind of ironic,” Steve said. “Every time you talk to somebody—one of your friends—[they say], ‘If there’s anything you need from us, just let us know.’ I’m thinking, ‘OK, how about you invite us over for dinner Saturday night?’ ‘Take Lori to the movies for me on Sunday, will ya?’ ”

  He chuckled wryly. “I want to say that, but . . .” His voice tapered off. “I have a very strong feeling about this myself, and it was told to me once before, and I’m starting to realize it now. When you have a disease like this, you tend to realize who your friends are. ’Cause there’s some friends out there who’ve just kind of basically turned away, shied away. Scared.”

  But Lori said the silence of her friends was understandable.

  “That may be true, but that doesn’t bother me, I don’t think,” she told Steve. “Our family chose to go forward. . . . I think we just kind of, all of us, made a choice to not feel sorry for [ourselves].”

  Steve knew his wife had a point. “It’s just been accepted that there’s a disease that we’re gonna have to fight, and we’re going to fight it,” he said. “We’re going to do everything we can to help find a cure. All the cards are on the table. We just need to play those cards going forward.”

  • • •

  They were still able, in 2012, to speak to the doctors in Pittsburgh about Lori’s plan to continue contributing to the research after her death. Like her brother Brian and her favorite cousin, Dawn, she wanted her brain to be sent to the university, where it would be examined in a separate autopsy—just as her father’s had been, and Auguste Deter’s a century before.

  In fact, Lori wanted all her organs donated to research.

  “Is it OK with you?” she asked Steve, as she signed a form verifying her interest in the brain autopsy program.

  Steve gave his support, and they agreed on a final plan: “We’re gonna have you cremated, and I want to take you to every place that we’ve ever been, and drop an ash somewhere.”

  The belief that she could contribute to a solution, possibly her last act of sacrifice as a mother attempting to change the course of her children’s lives, drove Lori fiercely through the research at Pitt.

  Sitting next to the PET scanner that had just taken detailed images of her shrinking brain, she shivered. The room was chilled for the benefit of the equipment, so nurses brought her blankets they’d warmed to make her more comfortable before her next round of scans, this time to measure how her brain metabolized glucose. She was worn out by the testing, and her brain was struggling to process its disorientation from the trip. Every time she traveled now, she came back permanently worse.

  How would you like to be remembered? she was asked.

  “That’s a hard question,” she said. And she gave the most honest answer she could, one that reflected who she’d been, at her core, her entire adult life:

  “Happy,” she said. “Hopefully, a good mom.”

  • • •

  Months after that 2012 visit, during which she underwent her seventh set of brain scans, she and Steve sat on a conference call with Bill Klunk, who reviewed her results along with the neuropsychological tests she had completed.

  Before he started, Klunk made small talk with the McIntyres. He’d come to know them as well as anyone ever had, examining the inner workings of their brains but also the interior map of their hearts. He asked about Claire, knowing Lori’s granddaughter meant everything to her. Then he moved on to the crux of the conversation.

  “As you’ve told us, each year it’s been a little tougher for the memory, right, Lori?” Klunk began.

  “Yes,” she said.

  “And that’s exactly what our tests show,” he said. In the 2,079 days since she first underwent research at Pitt, Lori’s cognitive function had gradually declined. She learned six out of ten words the research team had asked her to remember, but she forgot all of them twenty minutes later. She had difficulty with an executive function test that asked her to draw a clock face. She remained relatively strong in visual-spatial reasoning, a rare bright spot in her report.

  “But I think this pretty much tells us the picture, and the picture is consistent with what you told us,” Klunk said. “Memory this year isn’t as good as it was last year.”

  The MRI revealed a little more brain shrinkage than a similar scan from 2008, but there were no major changes such as strokes, tumors, or rapid shrinking.

  “All in all, there’s a little more shrinkage than we expect for your age, so a little more than an average fifty-three-year-old, but not anything tremendous,” said Klunk.

  Klunk compared her most recent PET scans to the originals six years earlier and said the trend showed a steady decrease in her brain’s use of glucose, consistent with a pattern seen in Alzheimer’s patients, particularly in the temporal lobes right above Lori’s ears. The largest cluster of amyloid was in her striatum, the very center of her brain, which usually occurs much later in late-onset Alzheimer’s patients. On the other hand, her brain hadn’t accumulated much additional amyloid across the six-year span; rather, the doctors felt that the changes Lori was experiencing were the manifestation of what had already accumulated for twenty years.

  That remained consistent with the Baptists’ working theory that amyloid levels built up early and triggered the mechanisms responsible for later symptoms. In time, even dedicated Baptists such as Paul Aisen, the neurology professor from the University of Southern California who was investigating Alzheimer’s in the general population with Reisa Sperling, would come to believe that tau levels rose steadily throughout the course of the disease, and that tau correlated with the later degrees of impairment that Lori was now experiencing. But PiB only measured amyloid, and there were not yet ways to look at tau to measure its growth and compare it to her behavior.

  “That’s one of the things we’re trying to figure out. It’s not just having the gene, it’s not just having amyloid in the brain. It’s other things [that contribute to Alzheimer’s], and we’d like to know what those other things are,” Klunk said.

  But he added: “Look at it in the perspective of the family: Lori’s holding her own really well.”

  “Thank you,” she said.

  “Given the genetic issue that she’s been forced to fight, you’re putting up a pretty good fight, Lori,” he added. “So keep fighting. Keep physically active, keep socially active. Keep fighting.”

  • • •

  Steve had the idea to stage one more bash for Lori, one more chance for her to embrace and celebrate with her friends before Alzheimer’s made that impossible.

  It was Labor Day weekend, Lori’s fifty-third birthday, and Steve planned a blowout of a party that attrac
ted friends and family from far and near to their house on the outskirts of Laramie. Karla and Gail, who knew they wouldn’t be able to make it that weekend, instead drove out earlier that summer for their own visit. Since both were hopeless at directions, they enlisted Tyler to drive them, and they had a wonderful time.

  When her birthday finally arrived, Lori held court, radiant in a printed yellow-and-orange top, her eyes alive with the excitement of so many people she loved gathered in a single spot. Brian’s son, Yancey, and his wife and newborn baby daughter drove all the way from North Dakota; Lori ran out into the yard to greet them. She was overwhelmed that everyone would come so far, for her, only for her.

  Her daughters presented Lori with the birthday gift they had been compiling for months. The idea was as simple as it was profound: contact as many people from Lori’s past as possible, and have them write a letter about a memory they had of her, accompanied by a picture.

  The McIntyre girls bound the responses into a single album for their mother to thumb through, reading about the woman she had been. There was a friend from her Tioga childhood who remembered how Lori and Karla would dress Jamie up in hair ribbons.

  There were pictures of Lori in 1977, about the time of her high-school graduation, sporting her ultra-short hair; a reluctant Lori in a flowered prom dress, about to head to the dance with one of the local boys who had always bored her. There was Lori as a young bride in the dress Steve’s mother had sewn, as well as a copy of the 1980 pattern she’d used to make the gown.

  Leafing through the pages of collected memories, some of which she could still recall and others which were now missing, Lori read about herself: an interesting, spontaneous woman who had lived her life fully and well, who was simultaneously nurturing and restless, always seeking adventure.

  The party spilled out to the driveway, the garage, and Steve’s workshop, under the bleached skull of a buffalo he’d once shot. In one corner was a stand overflowing with costumes: hats, feather boas, wigs, and props. Lori, like Gail, loved to clown around in dress-up clothes. Steve set up a discarded plow disk over a propane flame and cooked burritos; he grilled buffalo and elk steak to mouthwatering perfection, too.