She is leaving him, not all at once, which would be painful enough, but in a wrenching succession of separations. One moment she is here, and then she is gone again, and each journey takes her a little farther from his reach. He cannot follow her, and he wonders where she goes when she leaves.
—Debra Dean
To friends, the first noticeable signs of the disease came in the early 1980s. Initially, they noticed that he struggled to answer familiar questions. Then came the brief lapses in memory. In the earliest stages, some friends thought nothing of it. Shannon’s achievements, after all, had been triumphs of intuition and analysis, not memory or recall. As Robert Gallager put it, “Claude was never a person who depended a great deal on memory, because one of the things that made him brilliant was his ability to draw such wonderful conclusions from very, very simple models. What that meant was that, if he was failing a little bit, you wouldn’t notice it.” That he was beginning to forget things was, to many of those closest to him, simply a sign that he was succumbing to the normal hazards of age.
Soon, though, he was forgetting the way home from the grocery store and unable to remember phone numbers, names, faces. His hand began to quiver when he wrote. Peggy Shannon remembered one day when the family was hosting the Juggling Club. She was sitting on the floor, her father in a chair nearby. He looked at her, paused, and asked, “Do you juggle?”
“I was just floored,” she recalled. “Is it that he doesn’t know who I am or that he doesn’t remember that I juggle? Either one of them would be totally devastating.”
By then, the marked change in Claude was undeniable. “In 1983, he went to a doctor,” Betty said, “and the decision was that he probably was in the very, very early stages of Alzheimer’s.”
The Shannons began to be more deliberate about which travel invitations they accepted and which they rejected. At a 1986 event at the University of Michigan, Shannon was “very quiet,” noted organizer David Neuhoff. “I had the feeling at that time that he was already suffering from the affliction of Alzheimer’s. Betty did most of the talking.” Decisions about how much travel to attempt or how much information to reveal about Shannon’s illness fell to Betty, who desired to keep a cone of privacy around the family. “They felt like they’d earned the right to be private,” Peggy Shannon recalled.
The family worked to keep his mind engaged, but the disease took its toll. Shannon lost a great deal of cognitive function very quickly, and the challenges of caring for someone with Alzheimer’s put a heavy burden on Betty. “She was the primary caretaker,” Peggy remembered. “And he would wander. We lived on a busy street. It’s scary, to watch your partner have an illness like this.”
The Shannons entered an Alzheimer’s study at a local hospital, with Betty serving as the control. On whether Shannon knew what was happening to him, Peggy remarked, “There were days he knew, days he didn’t. . . . All I can say is when I saw him, there were times it was the same old dad; there were times when he was really out of it.” Watching him go, she said simply, was “mostly heartbreaking.”
In too-brief moments, the family was given a flash of the Claude they knew. Peggy remembered that she “actually had a conversation with him in 1992 about . . . graduate school programs and what problems I might pursue. And I remember being just amazed how he could cut to the core of the questions I was thinking about, I was like, ‘Wow, even in his compromised state he still has that ability.’ ”
But they were only momentary beams of light in the thickening fog. Within a few years, Shannon’s gaps became more pronounced, his moments of clarity fewer and further between. In 1993, remembered Robert Fano, “I asked him something about the past, nothing technical or mathematical, and Claude just answered, ‘I don’t remember.’ ” It is one of the cruelties of Shannon’s life that a disease of the mind was the cause of his decline. Friends and loved ones lamented that fact nearly as much as they lamented the reality that he would be gone soon.
There was also the more acute unfairness in the fact that, just after he was diagnosed, the digital world he had helped to bring about came into full flower. “Oddly enough, I don’t think he even realized what it turned into. . . . He would have been absolutely astounded,” Betty said. And he would surely have been pleased by the 1993 announcement of codes whose speed finally approached, but did not break, the Shannon Limit, had the news found any purchase on him.
From 1983 to 1993, Shannon continued to live at Entropy House and carry on as well as he could. Perhaps it says something about the depth of his character that, even in the last stages of his decline, much of his natural personality remained intact. “The sides of his personality that seemed to get stronger were the sweet, boyish, playful sides. . . . We were lucky,” Peggy noted. The games and tinkering continued, if at a more measured pace. Arthur Lewbel recalled one of his last interactions with Shannon:
The last time I saw Claude, Alzheimer’s disease had gotten the upper hand. As sad as it is to see anyone’s light slowly fade, it is an especially cruel fate to be suffered by a genius. He vaguely remembered I juggled, and cheerfully showed me the juggling displays in his toy room, as if for the first time. And despite the loss of memory and reason, he was every bit as warm, friendly, and cheerful as the first time I met him.
In 1993, Shannon fell, broke his hip, and had to be hospitalized. The cycle of rehabilitation and acute care was lengthy, a grueling period in which the question of what would come next was foremost in the minds of the family. For Betty, Claude was to stay at home—“home was a real refuge for her,” Peggy said—and she began to prepare one of the rooms of Entropy House, outfitting it with a hospital bed and other essentials. But Betty herself was getting older, and her daughter had a sense that the challenge of caring for her father might be too much to handle. She urged her mother to consider an assisted living facility, and though she left the final decision up to her, she was relieved when her mom agreed to move Claude to Courtyard Nursing Care Center, roughly three miles from Winchester.
For Betty, her husband’s distance from the house changed nothing: she remained utterly committed to him and his care, and she visited twice each and every day. Her daughter, Peggy, was moved to observe that “she was very devoted. She wanted to make sure he had the proper care. She also missed him. He had been the center of her life and that continued even when he moved into the home.” For Claude, these visits became treasured events. Betty said, “at noon I’d go over and nurses would line up on a bench waiting for me because when I came in his face would light up and he would grin. I thought that was pretty good.”
Other family visited from time to time, and the nursing home staff offered him simple arithmetic problems to help him pass the time. Shannon also remained a tinkerer through even his last days; he set to taking apart his walker, imagining a better design all the way. “He still liked to take things apart and figure how they worked,” Betty said. He had maintained use of his body and hands, and he tapped his fingers to music. “He was ambulatory . . . and he could walk around and see the rest of the place and see what was going on, but certainly, his mind was not there.” But his being able to move and function at a minimal level proved a bit risky. “They had to be careful with him because he would try the staircase in the nursing home, and go walking down the staircase, even though he had a walker with him. He would go outside and they had to go looking for him.”
Ultimately, his movements became impaired, and once-simple things—talking, feeding himself—became difficult. Claude Shannon died on February 24, 2001. His brain was donated for Alzheimer’s research. His funeral was held at Lane Funeral Home in Winchester, a small affair.
Years earlier, Shannon had set his mind to the question of this funeral—and imagined something very different. For him, it was an occasion that called for humor, not grief. In a rough sketch, he outlined a grand procession, a Macy’s–style parade to amuse and delight, and to sum up the life of Claude Shannon. The clarinetist Pete Fountain would lead the way, jazz combo in tow. Next in line: six unicycling pallbearers, somehow balancing Shannon’s coffin (labeled in the sketch as “6 unicyclists/1 loved one”). Behind them would come the “Grieving Widow,” then a juggling octet and a “juggling octopedal machine.” Next would be three black chess pieces bearing $100 bills and “3 rich men from the West”—California tech investors—following the money. They would march in front of a “Chess Float,” atop which British chess master David Levy would square off in a live match against a computer. Scientists and mathematicians, “4 cats trained by Skinner methods,” the “mouse group,” a phalanx of joggers, and a 417-instrument band would bring up the rear.
This proved impractical. And his family, understandably, preferred a tamer memorial. Shannon was laid to rest in Cambridge, along the Begonia Path in Mount Auburn Cemetery.
Yet in a cemetery home to Supreme Court justices, governors, presidents of universities, and many other famed thinkers, statesmen, and scientists, Shannon’s gravestone is unique. An unsuspecting visitor would see SHANNON engraved in pale gray marble and move on. What’s concealed, however, is a message on the reverse: covered by a bush, the open section of the marble on the back of the tombstone holds Shannon’s entropy formula. Shannon’s children had hoped the formula would grace the front of the stone; their mother thought it more modest to engrave it on the back.
And so Claude Shannon’s resting place is marked by a kind of code: a message hidden from view, invisible except to those looking for it.