Why Do Some Dementia Patients ‘Return’ Just Before They Die?
As they near death, some dementia patients recover mental faculties assumed to be long lost. Researchers want to know why.
Photo illustration by Amy Friend
By Billy Brennan
Published July 14, 2026
Updated July 15, 2026
In the spring of 2000, while completing his degree in psychology at the University of Vienna, Alexander Batthyany received an unusual call from his mother. She had just gotten off the phone with Batthyany’s grandmother. “I do not know what happened — but you should call,” his mother told him. “Somehow, she’s back again.” Batthyany was confused: His grandmother, who lived in a nursing home in Switzerland, had vascular dementia and, for the past year, had hardly been able to speak — let alone pick up the phone and initiate a conversation, as his mother claimed had just occurred.
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Doubting his mother’s story, Batthyany nevertheless said he would call. He dialed his grandmother’s number. When she answered, it was in the refined, elegant German he remembered her speaking in his childhood. In shock, he found himself wanting to shout: Oh, you can talk!
His grandmother greeted him affectionately. She told him that for the past few months, she hadn’t really been herself. She had been, she said, “very, very, very tired.”
At the sound of his grandmother’s voice, memories came back to Batthyany, flashes of things they did together when he was a boy: hiking in the Alps, skiing trips in St. Moritz, a visit to the famed puppet theater of Geneva. His grandmother remembered it all. For 10 minutes, they reminisced in what Batthyany called “the most lovely conversation.” Almost whispering, his grandmother told him, “You brought so much joy to our lives.” This was his grandmother — gentle, caring, warm — the same as he knew her before she fell ill. But as the call ended, he sensed beneath the joy a painful finality — that this conversation would be their last. Several days later, his grandmother died.
The conversation remained, in Batthyany’s words, “an inexplicable personal experience,” until one day in 2009 when he came across a paper in The Journal of Near-Death Studies, an academic outlet for discussion of death-related phenomena that have no ready scientific explanation. The article, written by a German biologist and parapsychologist named Michael Nahm, drew attention to reports of unexpected mental clarity in gravely ill people. Evidence of such events existed going back to antiquity, but the phenomenon had been largely forgotten since the 19th century.
Nahm called it “terminal lucidity.” In his research, he had come across many remarkable instances, including the story of a 26-year-old woman, Anna Katharina Ehmer, who died in a German psychiatric hospital in 1922. Ehmer reportedly had never learned to speak, but according to the accounts of two witnesses, spent the final half-hour of her life in bed singing hymns. Similar seemingly impossible behavior, Nahm found, had been seen in people with dementia, tumors, neurological disorders, abscesses “the size of a hen’s egg” and many other forms of brain-ravaging illness.
Batthyany realized immediately that Nahm was describing what occurred with his grandmother — and that he must not be the only one with such an experience. As a psychologist, he grew interested in the ways the events might affect those who witnessed them. He worked with colleagues to send out surveys, seeking cases from the modern era. Soon he had collected more than 60 reports, most of them relating to people living with dementia. In story after story, Batthyany’s respondents described elderly people who suddenly reached for a loved one’s hand; made amends for past wrongs; offered thanks; or simply seemed, through a shift in their eyes, to become present again.
In 2014, Batthyany’s initial findings were presented at the annual conference of the International Association for Near-Death Studies. An article that came out after the conference caught the attention of Basil Eldadah, a program officer at the National Institute on Aging, a division of the National Institutes of Health. Eldadah had a longstanding personal interest in the science of human consciousness, stretching back to his days as a medical resident; he followed the neuroscientific literature and kept up with research into poorly understood phenomena like near-death experiences. For Eldadah, terminal lucidity was particularly intriguing because it appeared in people with dementia — one of the populations he focused on in his work at the N.I.A.’s geriatrics branch.
Reading Batthyany’s case reports, Eldadah thought about Alzheimer’s disease and its relentless destruction of brain matter. The effects of that degeneration were said to be irreversible, and people with Alzheimer’s were often spoken of as if they disappeared in lock step with the progression of the disease. But if it were true that mental clarity and memory could return in the latest stages of the disease, even just temporarily, Eldadah realized, “it would call into question our models of what is actually going on in the brain.”
Eldadah secured funding for a two-day workshop where researchers could discuss what was known about the lucidity phenomenon and how best to study it. In June 2018, nine experts in nursing, geriatrics, neuroscience, psychology, patient care and linguistics assembled in a conference room at the N.I.A. office in Bethesda, Md. There was an air of uncertainty and excitement. At Eldadah’s invitation, Batthyany flew in from Vienna to present his case collection. Eldadah also invited George Mashour, an anesthesiologist and neuroscientist at the University of Michigan, to present on the science of consciousness. Mashour and several other attendees shared that, like Batthyany, they had witnessed lucid episodes firsthand. But the more the researchers discussed the phenomenon, the more it confounded them. Mashour likened the brain in late-stage Alzheimer’s to a pothole-ridden highway system on the verge of collapse, the biological traffic of mind and memory no longer able to flow. “If this were happening with actual highways,” he told me, “at no point would we say: ‘Well, you know what? Just before this highway totally collapses, we’re going to have a really smooth ride.’ We’d say, ‘It’s just going to get worse and worse until the whole damn thing crumbles.’”
The challenge in trying to study the phenomenon was that the workshop attendees didn’t know exactly what they were looking for: Because so little research existed, the lucid episodes’ distinguishing characteristics, based solely on anecdote, were poorly defined. Batthyany’s case reports indicated that many lucid episodes lasted just minutes and could be easy to miss. To document them, the group concluded that scientists would probably need to set up cameras, and the cameras would need to run more or less continuously. They thought it best not to limit the search to the days before death. Some proposed they think of the phenomenon as “paradoxical lucidity,” which would not only lessen the emphasis on death but also better reflect one of the main questions of interest: How could the mind resurface in a brain so terribly damaged by disease?
Leaving the workshop, the attendees saw in the phenomenon the potential not just for improved caregiving practices but perhaps even a new understanding of the nature of dementia. And for some of them, the potential went even further. As Eldadah told me, paradoxical lucidity seemed to offer an opportunity to scientifically investigate “the most fundamental question that we as humans have to grapple with”: the relationship between the body and the mind — and the nature of consciousness itself.
In 2018, when Eldadah convened the workshop, the Alzheimer’s field was going through a shift, as decades of research into treatments had come up frustratingly short. The atmosphere — and a recent funding increase at the N.I.H. — meant there was more willingness, as Eldadah put it, to “take a risk.” The year after the workshop, the N.I.A. began a $10 million initiative to study lucidity in people with late-stage dementia.
When Andrea Gilmore-Bykovskyi, an associate professor in emergency medicine at the University of Wisconsin-Madison, saw that the N.I.A. was interested in video research on lucid episodes, she knew one way to approach the problem. Her past work had involved filming people with dementia during interactions with nursing staff and then meticulously analyzing the videos, second by second, to assess which types of care affected patients’ behavioral symptoms. She proposed retooling those video methods to study lucidity.
Gilmore-Bykovskyi knew that people with dementia showed modest fluctuations in cognition frequently enough, particularly at the mild and moderate stages; she had also seen firsthand how, in the right environment and the presence of good caregivers, the behavioral symptoms of dementia could sometimes lessen. But the turnarounds described by the N.I.A. were said to be more pronounced and especially likely to occur in the final days or hours of life, a deeply sensitive time for cameras to be rolling at a patient’s bedside. Knowing she would need to closely partner with a medical facility and its staff to have any chance of success, Gilmore-Bykovskyi reached out to a hospice nearby, Agrace, which had a 12-bed memory care unit. The hospice agreed to work with her team, and in 2020 the N.I.A. awarded her a grant.
Lucid episodes were thought to be quite rare; Gilmore-Bykovskyi suspected her odds of documenting the phenomenon in such a small study were low. The cameras were set up in December 2021, and to the U.W. team’s surprise, the first episodes occurred not long after. By then, Alison Coulson, a nurse who served as the team’s data collector, had worked with Joan Stephen, an 89-year-old resident, for a few months “and not gotten a lot of back-and-forth,” she told me. Stephen had largely stopped speaking and had appeared not to recognize her family members for several months. Suddenly, while looking at old photos of her children one day, she named them. Cameras were running not long after when she recalled her late husband, John, and shared, in full sentences, specific details about his job (“He worked for Comstock Tire”). She also recognized a picture of the award-winning rose bushes she tended for decades, before Alzheimer’s took away her focus and made them wither. When Coulson showed the videos to Stephen’s daughter, she said she was amazed. “It was extremely exciting,” Coulson told me. (The U.W. team protects the anonymity of its study’s participants; some of the subjects’ family members permitted the team to share details with The Times.)
Sometime later, another participant, an elderly man with Alzheimer’s whose verbal output the researchers assessed to be “minimally coherent,” showed an even starker change. The man had been mobile throughout the full 10 years of his illness, but over a two-week period, his energy notably declined and he began spending more time sleeping in bed. Seeing this, nurses made the decision to tell his family to gather — the end seemed to be near. By the time his family members arrived, however, the man had gotten out of bed and begun speaking. During his decline, he had reverted, as many bilingual patients with Alzheimer’s do, to his native language. Now he spoke clearly in English again, reminiscing about his childhood and his father. The nurses and his family were stunned. He stayed alert like this for two days, at one point telling his family, “I’m leaving soon.” Nine days after the episode ended, he died.
Along with the U.W. team, the N.I.A. sent funding to five other research groups. One of those teams, based at the Mayo Clinic, focused its efforts on surveying caregivers about their experiences with lucid episodes. As the data came back, they found that there appeared to be different types. Some episodes resembled the prototypical cases of terminal lucidity like those that Nahm and Batthyany reported, with heightened recoveries occurring close to death. But many more were subtle instances — a flash in the eyes, a few meaningful words — that occurred weeks or even months before death. Many caregivers were deeply moved, but the events were not always positive on balance. “Sometimes they’re totally negative,” Joan Griffin, the lead researcher on the Mayo Clinic team, told me. “We had one caregiver who was like: ‘My dad was an [expletive] when I was young, and he had a lucid episode — and he was an [expletive] when he came back. He was a terrible father, and it reminded me about why he was so bad.’”
The Mayo Clinic group found that some events seemed to be triggered by the environment — for instance, by familiar music or old friends who reminisced in the person’s presence. The triggers did not appear to be reliable or replicable, but many caregivers made elaborate attempts to elicit the episodes again. Griffin recalled a woman in her study who said her husband had not spoken for years. One night, as they ate his favorite dinner — eggplant Parmesan — he looked at her and said her name. Thinking the meal had triggered the moment, the woman made the dinner again the following week and served it to him, hoping he would “come back.” He never did. Andrew Peterson, an investigator on a research team at the University of Pennsylvania, told me about a report of a man with advanced dementia who, seeing his son approach the top of a staircase, suddenly said, “Be careful.” The son repeatedly returned to the stairs and pretended he was about to fall, hoping to hear his father’s voice again.
By the time the U.W. team approached Ed Janus about joining the study in 2023, his partner, Mary Moebius, had lost most of her ability to speak. For 33 years, Mary had taught middle-school language arts in Verona, Wis., not far from Madison. She had been sharp-witted and a little shy. But in 2014, Ed noticed her personality starting to change. She grew paranoid and combative; she began to get lost. The woman who once spent hours spilling out her thoughts to him in all their complexity struggled to find her words. She was diagnosed with Alzheimer’s, and as the disease progressed, their conversations became fewer, her sentences more and more confused. Now 74 and in hospice at Agrace, Mary tended to get stuck in repetitive, rhyming loops of sounds when she spoke. Ed chose to believe that Mary had learned a coherent, lost language that he simply couldn’t understand; he called it “ancient Sumerian.”
Then on Oct. 13, 2023, with a camera focused on her, Mary spoke clearly again. In a small common area, a nurse’s assistant prepared a lunch of beans and casserole for her. Mary, dressed in a red shirt, sat in a specialized ergonomic wheelchair; her thick gray hair shot out in all directions. A rerun of “The Price Is Right” played on a nearby TV. Suddenly, Mary’s eyes appeared to light up. She reached toward the nurse’s assistant with an index finger extended. The assistant pulled away and laughed to someone nearby: “She tried to shove her finger up my nose!”
Mary dropped her face into one hand. Quietly, she said, “I’m getting ready to go.”
“You’re getting ready to go?” the assistant said. “That was a full sentence! Where are you going?”
“I don’t know,” Mary said. “That’s why I’m looking to you.”
“You’re looking to me? I don’t have directions.”
The assistant offered her a spoonful of food, but Mary took her by the hand and stopped her: “Not yet.”
Mary looked around the room. The assistant, seemingly preoccupied with making sure Mary ate, held out a carton of chocolate milk with a straw, but Mary didn’t take it. Instead she took the assistant’s hand, made eye contact and said, somewhat haltingly, “I can’t kill myself here.”
The assistant seemed caught off guard and stumbled for a second. “No, we don’t want to do that,” she said. Mary’s gaze dropped. She leaned forward and covered her eyes with her hand.
“Do you have a headache?” the assistant asked.
Mary looked up. “Yes, I do.”
Hearing Mary’s reply from across the room, Robyn Shearer, the nurse on shift at the time, responded in surprise. “OK! That was pretty clear.”
Some time passed. Shearer came with a cup of painkiller-infused ice cream. When Mary tasted the dessert, she said, “That’s what I wanted.”
Shearer joked with Mary, giving her a second helping of ice cream and doing a celebratory dance: “We did it!”
Mary laughed. “You did it,” she said. She kept talking to Shearer, but her speech was now dipping in and out of intelligible words. The flash of lucidity seemed to be ending.
Shearer and the nurse’s assistant went back to work and didn’t mention what happened. But several weeks later, a graduate student who was screening the tapes flagged the moment. Coulson gathered the two in a kitchenette to review the video. As part of the study protocol, she needed to make sure that people familiar with Mary thought something atypical had occurred.
The answer was clear. Seeing themselves going about their work as Mary tried, quietly but consistently, to communicate with them was jarring. The nurse’s assistant broke out in tears. As soon as the video ended, she went to find Mary in the unit’s activity room. “She hugged Mary,” Shearer told me, “and said: ‘I am so sorry that you have been trying to talk to me and I have not been listening to you, and I’m sorry that you could not find the language to tell me that you were in pain. And I promise you I will never ignore these signs again — not for you and not for anyone else.’”
When Ed saw the video, he felt conflicted. He said he was happy to hear Mary’s voice again. He noted the apparent increase in her awareness, the disappearance of the “ancient Sumerian.” But he found her tone inscrutable and struggled to understand what she could have meant. When she said “I can’t kill myself here,” was she asking the nurse for reassurance that she was safe? Was she trying to say something about the way she’d been treated? Did she feel trapped, depressed, afraid?
“It may well be that Mary’s soul is back,” he told Coulson.
ImageA sepia-toned photo illustration of a person sitting on a rock in a desolate landscape with sparkling stars obscuring their face.
Credit...Photo illustration Amy Friend
In a 2011 paper in The Archives of Gerontology and Geriatrics, Michael Nahm, the parapsychologist who first identified terminal lucidity, and the University of Virginia psychiatrist Bruce Greyson noted what they saw as a deeper mystery revealed by episodes of lucidity in dementia: The phenomenon seemed to show that the mind could continue to function even when the brain was significantly impaired. This was hard to reconcile, they observed, with the mainstream scientific belief in reductive materialism, which holds that consciousness originates from biophysical processes in the brain. “If you believe that everything we see and hear and feel and think and decide comes solely from the brain,” Greyson told me recently, “then you have to propose a mechanism for how the brain does that when it’s been deteriorating for years and years and not been able to do those things. How does it suddenly recover those abilities?” It was because of this that Nahm and Greyson thought lucid episodes could teach scientists about the mind-body relationship and the nature of consciousness itself.
When the N.I.A. announced the funding for research into paradoxical lucidity in 2019, the potential to explore these questions also caught the interest of Sam Parnia, a brain and consciousness researcher at New York University who now leads one of the N.I.A. studies. Parnia is best known for conducting the largest and most rigorous studies to date of near-death experiences in survivors of cardiac arrest. (He prefers to call these “recalled experiences of death,” and considers “near-death experience” vague and unscientific.) It was these studies that laid the foundation for his thinking about consciousness in those with late-stage dementia. In a series of conversations over the last five years, he explained how he saw unexpected episodes of lucidity as part of a growing evidence base that seriously challenges the materialist paradigm.
Studies have shown that up to 20 percent of people who survive a cardiac arrest report clear memories from the time when they were clinically dead. In his research, Parnia found that survivors’ memories followed a distinct narrative arc: They felt themselves separate from their bodies, sometimes hovering above the scene and watching with a sense of detachment as doctors tried to revive them; they began traveling to a destination, through what many perceived as a tunnel of light; they accessed a vast store of memory and underwent a review of every moment in their lives from multiple points of view simultaneously, judging the way their actions and intentions had affected others; and finally, although many protested, they re-entered their bodies, often utterly changed. The transformative nature of the experience could be seen in survivors’ reduced fear of death, a newfound desire to seek deeper meaning in life and — some other researchers have found — sky-high divorce rates.
In a pair of studies known as AWARE-I and AWARE-II, conducted from 2008 to 2020, Parnia tried to figure out if these subjective reports could be verified. To do so, he placed images above the patients’ heads in rooms throughout various hospitals. His thinking was that a person who had a near-death experience while undergoing CPR might be able to report seeing the images and thus provide proof that the mind could truly separate from the body. In AWARE-II, an EEG machine was used to monitor for signs of brain activity in patients during CPR.
The EEG readings showed that, during the time when they were clinically dead — meaning their hearts had completely stopped — some patients’ brains had periods of electrical activity consistent with conscious experience. But for some hopeful watchers, the AWARE studies ended in anticlimax: While one survivor in AWARE-I recalled details of the procedures he’d seen himself undergo that were later verified, he had been resuscitated in a room where Parnia’s images weren’t installed. (In AWARE-II, Parnia added a sound component: Bluetooth headphones placed over patients’ ears during CPR cycled through the names of three fruits — “apple,” “pear,” “banana.” Survivors were asked to list three random fruits that came to mind when they thought of their resuscitation. One named the correct three, but the sample size was too small to be sure it wasn’t by chance.) Even some scientists who believed Parnia’s studies were a fool’s errand praised the ambition and thoroughness of his approach. But the results were ambiguous enough that anyone involved in the debate over the nature of consciousness, materialist or not, could find evidence to support the beliefs they already held.
In his 2009 paper coining the phrase “terminal lucidity,” Nahm cited Parnia’s work on near-death experiences, noting what he saw as a commonality between the two phenomena: their relation to death. As his N.I.A. study on paradoxical lucidity progressed, Parnia also came to feel that, in certain cases, the experience of dying couldn’t be ignored. In some episodes, Parnia said that people reconnected with their old sense of self — but they also looked forward, their words relating to “a preparation for their departure.” He told me: “They’re expressing something lucid, but it isn’t to do with their ordinary lives. It’s something to do with what seems to be ahead of them.” They often spoke about feelings of contentment, the presence of deceased loved ones and a sense that they would soon be heading to a new destination, all features resonant with near-death experiences. “Generally,” Parnia said, “the frequency of these terminal lucidity experiences seems to go up more in proximity to death.”
The N.I.A. program has not investigated the brain mechanisms that enable episodes of lucidity in late-stage dementia. But Parnia thought the parallels he saw between lucid episodes and near-death experiences suggested a shared mechanism — what neuroscientists call “disinhibition.” In normal life, our brains are constantly blocking some neural pathways while keeping others open. This balance helps us focus on what matters to us most — eating, relationships, work — and prevents us from being flooded by all the information we’re taking in at any given moment. “Our general perceptions are that when your brain is disordered, you lose all function,” Parnia told me. “What we’re finding is that, paradoxically, in disordered states, sometimes that disorder actually opens up pathways to new abilities that were hidden before.” These instances of disinhibition seem to connect people, in Parnia’s view, “to parts of their consciousness that they couldn’t access before.”
Parnia has a level of institutional prominence rarely seen in the world of near-death research. This authority made followers of the AWARE studies especially curious to know what he thought of his findings: Did he feel he had evidence that the mind could exist apart from the brain? That there was life after death? He responded cautiously while the studies were ongoing. But in his 2024 book, “Lucid Dying,” Parnia firmly staked his position in the mind-body debate. “We are at the cusp of the exploration of a new frontier in science,” he wrote, declaring himself “quite optimistic that the nature of human consciousness — our very selfhood — will be discovered to be a flux of energy like electromagnetic waves that interacts with the brain and body but is not produced by them.”
Basil Eldadah, who left his role at the N.I.A. last April to become the director of a natural burial ground in Maryland, told me that the first AWARE study had partly inspired his approach to the lucidity research program. When I asked him what he thought paradoxical lucidity indicated about the mind-body relationship, he said that he felt the phenomenon did not offer the same kind of clear-cut challenge to the materialist paradigm as near-death experiences did. “I think you could easily propose that there is some residual capacity of the brain that, somehow, is able to be unleashed during lucid episodes in dementia,” he told me. “You don’t have to invoke an alternative to materialism to explain all of lucidity, at least for now. We just don’t understand enough about what’s going on.”
Parnia told me his belief that consciousness most likely is not produced by the brain “does not mean consciousness is magic, and it doesn’t mean it’s not scientific.” The challenge, he said, is that scientists do not have ways to directly measure consciousness — whatever it is — and so investigating its nature has usually been left to philosophers. Parnia thinks that scientists should not shy away from pursuing those questions themselves, building off whatever evidence is available — and following the answers wherever they lead. “The reason why I’m more open to this is because, when you look at people who die and come back — definitely, their brain shuts down,” he told me. “And definitely, at best, it is highly dysfunctional. At worst, it is nonfunctional. Yet we have five decades’ worth of data that tells us there is lucidity. There is paradoxical lucidity in death.”
The U.W. team published its findings last August in The Gerontologist, one of the top journals in the field. In evaluating the phenomenon, the study didn’t just rely on how the nurses and caregivers responded. The video recordings offered the U.W. team something no one had ever seen before: the first objective data on the way people experiencing episodes of lucidity communicate.
In each of the three people who had lucid episodes captured by the study, the team found significant shifts in communication and behavior. Some of the findings seemed obvious to anyone who watched the videos: Overall, each person spoke with a higher rate of meaningful vocalizations during a lucid episode. But the shifts went beyond words. In Mary’s case, the study showed that in the moments when she appeared to be lucid, she held more eye contact and laughed more.
Even the tiniest moments offered a wealth of insight. Both Mary and Joan Stephen, for instance, showed a higher propensity for using filler words like “um” and “uh,” which tell the listener that the speaker is aware of them and asking them to wait while they find the word they need. And when the nurse’s assistant asked Mary if she had a headache, Mary’s seemingly simple reply, “Yes, I do,” suggested that her working memory — which temporarily holds and processes information and is often one of the first forms of memory to become impaired by Alzheimer’s — was back.
In some of the other N.I.A. studies, similarly surprising levels of cognitive and functional recovery have been reported. Griffin, the head of the Mayo Clinic team, told me about a family in her study who spent their Christmas dinner debating where one of the children should go to college — an expensive private university in another part of the country or a more affordable state school that was close to home. “There was a lull in the conversation, and the grandfather, who had not spoken in something like six months, said: ‘I think he should probably go to the state school. It’s more valuable, and it seems like it would be a better fit for him.’ Everyone around the table dropped their forks.” The episode showed the family that not only could the grandfather speak — he had been processing the conversation the whole time.
Gilmore-Bykovskyi emphasized that the U.W. team’s study was just a small, early piece of the immense body of research that will be needed to understand episodes of lucidity. “People could spend their entire careers studying this,” she told me. Recently, she and Griffin introduced a cross-disciplinary effort they call the Lucidity in Alzheimer’s and Dementia Network, bringing together Parnia and about a dozen other researchers to systematically approach the phenomenon. They hope that these studies will one day help scientists explain what it is, why it occurs and how to help those who witness or experience it.
When I first began research for this article, many of the available written accounts of lucid episodes seemed like chapters from a book of lost fables: Like Sleeping Beauty, Anna Katharina Ehmer is robbed of her voice and her mind and spends her life unresponsive in bed — only to sing hymns at the hour of death. The videos I saw were remarkable but decidedly less literary. People’s words weren’t always clear. They answered one question, then fell silent to any follow-ups. They remembered the names of three of their children and, shown a photo, didn’t name the fourth. There were no hymns or spontaneous poems here, but the words still reached people with an impact that reverberated in unpredictable directions.
On a brisk morning in January, I met Coulson, the U.W. nurse in charge of data collection, at Agrace. Coulson is friendly and inquisitive; she has kept in touch with some of the caregivers from the study. Despite having worked most of her nursing career in hospices, she told me she hadn’t seen paradoxical lucidity until she began working with the U.W. team.
The study had enrolled its 33rd participant not long before, and Coulson was there to collect data. The memory care unit was a locked world unto itself, with carefully selected art meant to evoke familiar scenery from the residents’ lives — sun-drenched bales of hay, a wooden dock on a lake in the Wisconsin Dells, the dome of the State Capitol towering over modest homes on the Madison isthmus. Coulson greeted the participants as she went around the unit. She looked each person in the eyes and asked if it was OK for her to film; not detecting any signs of dissent, she set the cameras up. One man lay in bed, opening his eyes every few moments to stare at the verdant blur of pine trees just beyond his window. Coulson tiptoed in and attached a microphone to his headboard, where it could pick up anything he might say.
Later that afternoon, Ed Janus, who had agreed to watch the tapes of Mary’s lucid episodes with me, came by in a buoyant mood. But I detected a hint of reservation in his voice. “I hope you’re not going to make me watch that awful video,” he said, only half joking. Altogether, the study found that Mary briefly became lucid on four separate days. The video Ed had in mind was the only episode he had been present for. He opened his laptop and pressed play.
In the video, Mary sits in a wheelchair in a hallway of the hospice. Ed enters the frame and puts a knit blanket over her shoulders. “Snug as a bug in a rug,” he says to her. He steps off camera and starts talking to Coulson.
“Looks like something from that movie where they’re in the pods,” Ed jokes.
“‘Cocoon’?” Coulson asks.
“No.”
“I don’t know what movie you’re talking about.”
“Neither do I.”
The camera captures Mary as she trains her eyes on them. Coulson suggests Ed watch the 2016 movie “Arrival,” in which aliens descend and baffle the planet with indecipherable messages until an enterprising linguist decodes their language. “It’s a little scary, but it’s fascinating — fascinating to think about interspecies communication.”
Ed laughs. “Sometimes I feel that way about Mary — ‘interspecies communication.’”
At that moment, looking toward Ed, Mary lets out a rolling laugh. Then, softly, she says, “Come this way.”
Ed doesn’t hear Mary, but Coulson does: “She said, ‘Come this way.’”
Surprised, Ed turns and faces Mary. He pats her shoulder. He gently brushes a hand over an errant tuft of her gray hair. Then he turns around and begins chatting with Coulson again.
As we watched the video together in January, Ed’s entire body tensed up. Seeing himself turn away from Mary, and joke as if she weren’t sitting right there, left him feeling an ache of regret. Loss in dementia is often conceived of as the destruction of the sick person’s self. But what Ed felt was the pain of a shared loss: the loss of his ability to connect his mind to Mary’s. When he watched the videos, I saw him struggling to understand Mary’s tiniest gestures and words, unable to settle on a convincing interpretation. Even the moments of lucid speech brought only more questions. Mary was undeniably acting in those moments in ways she hadn’t for many years — but if lucidity implies clarity, Ed’s experience of the episodes was anything but clear.
A couple of months after Mary arrived at Agrace in 2023, Ed could see that she was slipping into the final depths of her illness. On Jan. 25, 2024, around 4 a.m., a nurse called Ed to tell him Mary was dying. Ed and a friend of Mary’s, Marilyn Rhodes, gathered at Agrace. Rhodes sat at Mary’s bedside, listening to her breaths. At the moment Mary breathed out for the final time, Rhodes recalled, everyone in the room looked out the window to see “this bright red bird in this misty green backdrop” — Mary’s favorite, a cardinal. “It was one of those experiences where it doesn’t matter what the explanation is,” Ed said. “It’s not the point.”
Ed scheduled a memorial service for Mary in a park that July. As the day approached, he tried to write a eulogy, but his words fell flat. He wrote a dozen drafts and discarded them all. One day he realized that rather than listening to him talk about Mary, maybe people would want to hear Mary speak — “because Mary could be quite talkative, and she, for sure, still had a lot to say.” As he sat at his computer, an image came to him: a cardinal carrying a letter in its claws. The letter was from Mary. He imagined opening it. He began to type the words he saw.
“I suspended disbelief,” he told me. “I let Mary write.”
https://www.nytimes.com/2026/07/14/maga ... roid-share
