I'm Debra Cayman. I'm an investigative reporter for The New York Times. One morning, a few months ago, I got an email, and this person said to me, Hey, I have some documents I think you want to see. So I got on a plane that afternoon, and I met them in person, and I photographed the documents, and we were able to tell a story that moved our reporting forward in a really significant way. When you subscribe to The New York Times, you're getting a whole team of reporters who are willing to jump and go verify information and bring back documents and shine light on things that other people would like to keep in it.
If you're a subscriber, thank you for being a part of that. There was this story that my dad always told about how he fell in love with my mother. Both of them were living in Europe. It was in 1956. My dad was a student, and he had become so passionate about the student uprising in Hungary that he decided to spend his Christmas break assisting the revolution.
So he and a friend made plans to travel down to the border of Hungary and Austria. My mom, who was at that point an acquaintance, tagged along. But when they got there, she stayed behind and they crossed the border in Hungary. It wasn't long before they encountered a row of Soviet tanks, at which point they decided their work here was done and retreated. Instead, they decided to leave the Hungarians to their own devices and spend the rest of their winter break skiing.
Now, my dad had never been on skis, and this was sort of characteristic that the way he approached it was essentially to get on a ski life to the top of an elp, where I guess he imagined that he was going to learn how to ski by skiing down it, and almost immediately dislocated his shoulder and someone called a medic, and in preparation for resetting the shoulder. The medic handed my mother a rag, soaked in chloroform, and told her to hold it over his mouth, which she did. And the way my dad always told this story, he would say, and I woke up married. That was a story that my dad would tell, even after his brain injury and dementia had really scrambled many of his memories.
From the New York Times, I'm Rachel Abrams, and this is the Daily on Sunday. Over the course of a few years, Times reporter Ellen Berry watched as her father's memory slipped away to dementia. It was a kind of painful experience that a lot of families suffer through, often in isolation. Today, Ellen recounts her journey with her father, and how years after his death, one neuroscientist helped to explain to her what had happened to him and what her family had gone through. It's Sunday, July 26th.
I am a big fan of sentient houses in general. I think this is one of the scariest books I've ever read. Listen to the book review, wherever you get your podcasts. That door shouldn't be open. Who left it open?
Ellen Berry, welcome to the Sunday Daily. Thank you. Ellen, you were a foreign correspondent for many years. You lived in Moscow, Delhi, London, and recently you wrote very movingly about your father and his illness and how it affected your family, who, if I understand correctly, you moved back to the United States to be closer to. I want to start by having you describe what specifically prompted that move and how your father's health deteriorated from there.
We had been in India for four years, and in India you realize that almost everyone lives in a joint family, like a multi-generational family. I really began to admire this arrangement, and my parents were in their late 80s. They'd spent their lives in the foreign service moving every few years. At the time, though, they were in a house in D.C. Retired, and we were looking for a way for them to make a transition into a new arrangement.
We came up with this plan to buy a two-family house, and the idea was that they would have some autonomy lived downstairs. My kids could have a period of time living with them. I sort of knew it was now or never because of their age, and so we did it. So one week before the movers were supposed to come, my dad had a fall. He fell hard.
He hit his head on the floor. It was a hardwood floor. He lost consciousness. My mom was the only person with him, but she thought it was five minutes. It was obviously an extremely serious head injury, and for a few days it wasn't clear whether he was going to survive it.
Once they were able to do a brain scan, they told us that he had a subarachnoid hemorrhage, like to get out of brain bleed. I remembered subarachnoid because I used to call it under the spider, but I remember like two days afterwards, when the nurse came in and he asked for a newspaper and a cup of coffee, and that's how we knew that he was okay. So he was improving, healing. Yeah, he was up and about, and it seemed like he might be recovering, but was time, and especially with retrospect. It's now clear that this is the beginning of a sort of accelerated vascular dementia that ended up being the cause of his death four and a half years later.
After the injury, how was he, like, just in terms of cognitive function, how was he, how did the injury affect his thinking, speaking, just sort of everyday living? Yeah, so he was in a rehab facility for a few weeks, and we were just kind of trying to figure out, like, when would he be okay to come home and what exactly were we dealing with? And we couldn't tell. It was right after his injury, so it wasn't clear. But some things began to emerge.
He began to have what I would describe as bizarre, but very interesting delusions. How so can you give some examples? He told us that his roommate at the care facility was smuggling Black caviar into the country, and somehow he believed that he had been wrapped into this scheme. He also reported to me that the nurses here are all KGB. And I said, how do you know?
And he said, because they speak perfect English. Obviously, proof. But also, more seriously, he didn't really know where he was. He would try to go into the room room. He didn't know why he was in a rehab facility.
He didn't understand why he couldn't leave. And he was more than before the injury. He was really impulsive. I think we had the idea that all this confusion was a function of being in the hospital and that once we got him home and settled, that it would resolve. So what did it look like when he got home?
What was that like? Well, I think we felt like we had just reached home base somehow that now he would sort of come to rest in a place that was comfortable. They moved into the downstairs and put up their art from the house in Washington and really kind of recreated the house that they had just left. My mom started gardening and she started cooking for him. They had two poodles.
There were aspects in which his life was very similar to the routine he had before his injury. So he would get up and commit the first two hours of the day to reading The New York Times, walking the dogs. It seemed like things were kind of normal, but really from early days, we began to notice some behavior changes. Some of them were just absurd and sort of comical. He was really impulsive.
The things he wanted were not all that different from the things he would have wanted in his old life. For example, my mom said she wanted a bird bath. Like an actual bird bath would be put out. She wanted a bird bath. And one day we got a bird bath from China.
And then the next day we got another bird bath from China. And we ended up getting seven bird baths. One after the other in seven birds. Incredibly in a cascade of deliveries, we returned every single one, I guess, but one, we must have kept one. We got a delivery of I think four or five laptops, four or five laptops.
We had to return all those two. These were things that presumably your father was ordering online when nobody was looking. Yes. At one point, I expressed the desire for a Japanese dwarf maple tree. And one night he just disappeared.
He left the house at like three or four in the morning with the car and we called the police. And my husband, I don't really know how. He knew immediately where to live for him. It was the dead of night and he drove out to a nursery, which was I don't know, probably 25 minute drive. And he pulled out outside this nursery and my dad was there alone just waiting for the center eyes and he had smashed up the car.
It wasn't terrible, but like he should have been driving. My husband went up to him. He was sitting outside this nursery. And my dad always knew what to say. He said, fancy meeting you here.
But there was one change in particular that was for us very difficult to handle. And that was that he thought he was in the wrong place. And he felt pretty much all the time that he had to leave. What do you mean? You know that feeling when you think you might miss your plane?
That kind of restless feeling? Yes. It's like he had that every day. He would say, well, we have to pack the car and go drive down to Washington or I have to catch a flight. He said he had to catch a high line to Kiev.
He said he had to go to Philadelphia. He said he had to leave the next morning to take a water route to China, which from Massachusetts doesn't make a lot of sense. No. He said he had to go to Vienna to accept an award to the vote of Kirca. He had different ideas about where he was supposed to go, but the feeling was always the same, which is like that feeling of if we don't get ready, we're going to miss our connection.
I take it that he didn't actually have to go to any of these places, but would he actually try to leave? Yeah. What do you do? Yeah. I mean, if he didn't try, it wouldn't have been as much of a problem.
So what he would do is he would pack two cases. He would take all the art, all the pictures off the wall and put them in the car. Sometimes he picked up an entire decorated Christmas tree and put it in the car. Wow. And sometimes he would leave.
Sometimes he left on foot in the early days before we took away the car keys he left in the car. And so it became a kind of habit in our house that we would catch him as he was trying to leave and we would try to redirect him. We would bring him inside. We would tell him whatever we had to tell him. Sometimes we would drive him around so that he had the feeling of movement.
My husband, God bless him, sometimes took him to Logan Airport and just let him walk into the terminal and then come back to the car. So it's just to be clear when he is trying to leave and you're interacting with him, are you trying to convince him of where he is that he doesn't actually have a place to go? Are you trying to reason with him and remind him that this is his home? Yeah. Well, I mean, this went on for four years.
So all of those things. And when you did try to redirect him in those situations, how would he respond? I mean, he still had the same personality. He was incredibly stubborn and he thought we were trying to hood with him. We would try to tell him he didn't have to go to the airport and he didn't believe us.
There were times when we were really skillful and inventive and there were times when we were frustrated and desperate and angry that he didn't understand that we had set up this whole arrangement for him. I remember one time my husband, who was the one who did a lot of this redirecting, wrote a note that he stuck on the inside of the door that said, Bob, you live here. Don't move. We love you so that when he was leaving, he would somehow be reminded that this is where he belonged. Did that work?
Not really. And in the end, we had to get a locksmith to come in and install locks on the inside of the doors just to make sure that he didn't leave during the night because no matter how many times we told him, he didn't seem to be able to remember that he had decided to move in with us that we had bought this house together and that this is where he was planning to live. So all of that, like recent stuff that had happened leading up to the move, it was all gone. He couldn't access it. If he couldn't remember things that were recent and were there things that he could remember from farther back?
Yeah. It seemed like the farther back it was, the better he could remember. Oh, really? There's a particular night that made me realize this. I could hear what was going on in the apartment from my bedroom and I heard him downstairs, I don't know, it was the middle of the night and I went downstairs in my pajamas and he and my mother were sitting at the kitchen table and he was crying.
And I wasn't used to seeing him cry. He was a very controlled personality and he was telling a story. She was standing behind him. She had her hands on his shoulders and he was telling this story. When he was six years old, his family left Pittsburgh where he had been born and they moved to an Air Force Base in San Antonio.
They took a train from Pittsburgh, changed trains in Chicago. He was leaving everything, but he was able to take one pet. The pet was a canary that he was carrying in a cage on the train and they were in Chicago in the station, walking to catch their connection to Texas and the bottom fell out of the cage and the canary flew out into the station and the canary just goes up into the upper reaches of this station and he had to keep walking with an empty cage and get onto the next train without the canary.
Did you have any idea what had prompted this? No, and sort of beyond that, I knew his life story pretty well. He'd written a memoir that he didn't publish but I had read. That story wasn't in it. He liked to tell stories.
That was not a story he had ever told me. Unlike the KGB nurses, unlike the roommate secretly smuggling caviar, you were able to recognize this was in fact an intact memory. Yeah, this was not an anecdote or a story that he was telling us. It was a memory that he seemed to be reliving so painfully in real time in front of us while he's out at the table. I remember after having this conversation, I remember being just mystified.
He seemed to have lost so much of his memory about his life and yet this one thing, it was perfect like a belgire. It was like perfectly preserved and a lot of time would pass before I found out why that was. We'll be right back. Ellen, it sounds like your father basically was reliving a memory of losing this canary when he was six years old.
This is a story you had never heard before. What did you learn eventually about this memory that it seemingly resurfaced? My dad died and about a year later, I was covering my beat, which is mental health, and I opened my email and saw this press release come through. This is pretty normal for me. I just scanned them to see whether it's something that we should cover.
But this particular press release really caught my attention. It was for a paper in nature of neuroscience about the creation of memory and almost immediately it made me think of that whole thing that we've been trying to manage with my father during those years. So I reached out to the scientists who had written the paper, Priya Rajasathapathi, and we talked about her work. I interviewed her. At the end of the conversation, I told her about my father that he had a fall, that after the fall, his memories were scrambled, and that some of them seemed to bob to the surface in a way I couldn't understand.
She asked me if I had any scans of his brain. Presumably you did from his time being ill. We didn't. But I began what would turn out to be a prolonged process of getting a hold of the scans that were taken right after his fall so that you could show them to her. So what did she make of them when she saw them?
Well, we arranged to meet in her office at Rockefeller University, which is this beautiful old campus overlooking the East River. And I was very excited to have finally shown up with these scans, but she wasn't able to open them. She didn't have the software. So I ended up walking away empty handed. But a day or two later, she sent me a text message and she said, I've been able to open them.
There's something pretty interesting. And I remember getting this. I think I was in the office working on something else and just teared up because I couldn't believe that there was something to find in the scans. And she told me to come back the next day. And that's what I did.
And when you went back, what did she tell you? So I mean, do you look at the brains of people you know? Do you not? No, actually. I sat down and right away.
And then here's the CT scan. She was showing me cross sections of my father's brain. See this? There? There's a white thing.
This is I'll show you a different view of it. This is kind of the biggest bleed that he has. And she pointed out to me what looked like a star or like a burst of white, which was deep in the brain. Boom. There it is.
There it is. What was she pointing to exactly? What was she seeing? It was the bleed that damaged his brain after he fell. These are the white leads are immediate.
The brain lead had directly affected the hippocampus, which is this part of the brain that's known to be the kind of engine of memory that kind of takes in stimulus from the outside world, differentiates and records important stimulus as something that is going to be retained as a memory. Here's the hippocampus on the other side. You see this looks like a seagull. Like a seagull. Like a seagull.
On this side. And that's kind of where the bleed is. It's only on the right side. And so his injury was on the right hippocampus, which is the part of the brain that organizes your sense of place and location. And of course, that is exactly what we have been struggling with for four years.
For sure. What the picture shows and what I experienced lines up that like that the thing that he couldn't do is like we couldn't convince him that he was in the right house. Yeah. So this is like the first time it sounds like that you were really being given an explanation for what you experienced with your father when he was disoriented, when he felt like he was not in the right place, when he was restless and he was trying to leave. Yeah.
It was like a physiological, concrete explanation. Okay. So the hippocampus is damaged, but how does that help explain the canary story? Like the older memories that seem to be undamaged. So she told me that there are some memories that can be stored in more protected parts of the brain, like the prefrontal cortex so that they stick around even if the hippocampus is really damaged.
So why are some memories stored in one place and saved in other memories are stored in another place at the most? What you've taught me about the thalamus is the role that it plays in gating. Yes. So what she has discovered is that there's an organ in the brain called the thalamus that seems to function as a gatekeeper. Our brains naturally say what's important.
The canary's important is that meeting my wife was important and the thalamus gates it in transfer to the cortex. It sends these particularly salient memories, particularly important memories, into the more protected parts of the brain. And that's why he had these cortical memories that really were still so important to him. And how does the thalamus decide what goes where? Well, that's what she's trying to figure out.
The canary is a kind of traumatic memory. Other memories like Tanya Wanda? That was a rewarding memory. Yes. But are you saying like we keep both of them?
Yes. She thinks that it has to do with what she called valence, the kind of intensity of the experience, whether it's negative or positive. We really go to a really bad. But if it's high on the veil spectrum of both, we can see them selected at the level of the thalamus. And so we have active projects going on in terms of how that's happening, but we don't know yet how it assigns that value.
It was very clear that it does. And I think that's how that happened. So like the canary story for instance might have stayed perhaps because it was something that really meant a lot to your father, really impacted him at a young age theoretically. Exactly. What are the implications of all of this?
Her research, which she's learning, I think it raises this sort of tantalizing possibility that maybe we could help people hold on to some memories that are just really essential to living. If you look at early stage thalcenters, they often come in and they still have some functioning. Right? If you could somehow learn to manipulate that gatekeeping mechanism, what's happening in the thalamus. If you can go in and say, hey, they're weak things that are coming in, they're not able to be stabilized by the hippocampus itself.
But if we can offload them very quickly, can we send them off? You could move those memories out of the damaged parts of the brain into healthier long-term storage before they're lost. Even if half of it's gone or 80% of it's gone. If 20%, 10% of our neurons are okay. And we're right there offloading things and stimulating this part of the brain to get things into the circuit.
I think of that as a promising approach. Does it feel to you like this is moving faster than it ever has? Like our understanding is, for me, it just feels like it's real and new. Those are two things I feel most about. You mentioned the idea of saving memories that are essential.
What memories are we talking about specifically? I mean, recognizing your family, the people around you, recognizing the place where you are and knowing that you're home or that you're safe, the kinds of things that at the end of your life, you really want to hold onto. How did it feel, Ellen, to walk away from that meeting with at least some kind of theory about what your father had experienced at the end of his life? So I remember walking away from that meeting really sort of thrilled. It was so surprising that there was something so physiological that could kind of explain what we had been through during that time.
And I remember calling my husband and telling him the part of his brain that was injured in the fall, that was the part that creates memories about location and place. It just explains so much. And I asked, what are you thinking? And he just, he said it made him feel sad. Wait, why did he feel sad?
Well, to understand this, you'd have to sort of understand the way our household functioned. I was working a lot. I was traveling a lot. And my husband was the one who more often than not had to track down my dad when he wandered away. Had to find him on the side of the road in our neighborhood, talk him into getting in the car, tell him some kind of story about why he had to go home.
He's the one that took him to the airport. And I think he just felt sad that for all this time, we didn't really understand that there was a permanent change, that something had changed about him, that we couldn't talk him out of it. We couldn't retrain him or teach him. You couldn't reason with him, convince him to where his home was. But also that like no one had told us, you know, you're going to spend the rest of his life trying to persuade him that he's home.
Do you think if you had known any of this, it would have changed how you interacted with him? I think it would have helped to know that we couldn't talk him out of it. It would have helped to know like, this is a one way change. It's not changing back. It would have helped to know he wasn't being stubborn or willful or impulsive, but that, you know, something had changed about his brain where he just couldn't compute.
I think it would have helped us come to peace with the fact that he was a different person from before the fall. I don't know, understanding what's happening in the brain doesn't mean that you can stop it or reverse it. But it may prepare you better for accompanying them to the end. Ellen, thanks so much. Thank you.
Today's episode was produced by Luke Vanderplug with help from Alex Baron and Tina Antilini. It was edited by Wendy Doar and engineered by Rowan Nie Misto. Production assistance in fact checking by Dahlia Haddad and contains music by Mary-Ann Lozano and Dan Powell. That's for the Sunday Daily. I'm Rachel Abrams.
See you tomorrow.