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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 is 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 breaks 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 lift to the top of an help, 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 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 memories slipped away to dementia. There's 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. Hi, I'm Megan Lorum, the director of photography at the New York Times.
A photograph can do a lot of different things. It can connect us. It can bring us to places we've never
been before. It can capture a story in a universal visual language. But one thing that all these photographs have in common is that they don't just come out of the ether. We spend a lot of time anticipating new stories, working with the best photographers across the globe. These are photographers who have spent years mastering their technical craft, developing their skills as visual chroniclers of our world. Getting certified as a scuba diver and learning how to shoot underwater to
document climate change or tremendous cardiovascular training in order to ski on the slopes next to Olympic athletes. This is an effort that takes tons of time and consideration and resources. All of this is possible only because of New York Times subscribers. If you're not a subscriber yet, you can become one at NYTimes.com/subscribe. Ellen Barry, 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 its 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.
we were looking for a way for them to make a transition into a new arrangement. So 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 moveers
or supposed to come, my dad had a fall. He felt hard. He hid his head on the the floor. It was 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 sub-rack-noid hemorrhage that he had a brain bleed. I remembered sub-rack-noid because
I used to call it under the spider, but I remember like two days afterwards when the nurse came in
“and he asked her 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 with time and especially with retrospect. It's now clear that this is the beginning of a sort of accelerated, the scheduler 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 how did the injury affect his thinking, speaking, just sort of every day 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 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. House love so can you give me a example? Okay, so 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 wrong 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, you know, there are from the House of Washington and really kind of recreated the House that they had just left my mom started gardening and she started cooking for him and they had two puddles. There were aspects in which his life was very similar to the routine he
had before his injuries. So he would get up and commit the first two hours at 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 to be put out there. 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 bath 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.
laptops. Four or five laptops. We had to return all of 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 look 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 up 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 shouldn't 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 meaning 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 on 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's kind of rustless feeling. Yes. It was like he had that every day. He would say, well we have to back the car to go to 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 at the votive kirka. 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 gonna miss our connection. I take it that he didn't actually have to go to any of these places but what he actually tried to leave? Yeah. What did he 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 suitcases. He would take all the art, all the pictures off the wall and put them in the car. Once he picked up an entire decorated Christmas tree and put it in the car. Wow. And sometimes he would leave.
I'm 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 just 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 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 hoodwake 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 like we had set up this whole arrangement for him. I remember one time my husband who is 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 insides 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 Ellen were there things that he could remember from farther back? Yeah it seemed like the
Farther back it was the better he could remember.
me realize this. I could hear what was going on in their apartment from my bedroom and I
“heard him downstairs, I don't know, some 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 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 or he had been born and they moved to an Air Force Base in San Antonio.
They took a train from Pittsburgh, change 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 would it prompt at this? No and sort of beyond that I knew his life story pretty well. He had 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 sat 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 bell jar. It was like perfectly preserved and a lot of time would pass before I found out why that was. We'll be right back. So 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 would never hurt before. What did you learn
eventually about this memory that had 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 and 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 neuroscience about the creation of a memory and almost immediately
it made me think of that whole thing that we had been trying to manage with my father during those years. So I reached out to the scientists who had written the paper, pre-arrogous ethypathy and we talked about her work. I interviewed her and 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 and she asked me if I had any
scans of his brain and presumably you did from his time being ill. We didn't but I began what would turn out to be kind of a prolonged process of getting a hold of the scans that were taken right after his fall so that you can show them to her so I 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 hav...
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 after you've not? No actually. I sat down and right away and then here's the um
CT scan she was showing me cross sections of my father's brain. Hmm see this where there's
white thing this is I'll show you a different view but 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 yeah there it is. What was she pointing to exactly what was she seeing? What she had seen was the bleed that damaged his brain after he fell off in the fall these are the white bleeds are immediate. The brain bleed 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. Hmm here's the hippocampus on the other side you see you see this looks like a like a sea horse and you see it 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 are
really being given an explanation for what you experienced with her father when he was disoriented when he felt like he was not in the right place when he was restless when 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 or stored in another place and lost? What you've taught me about the thamus 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 thamus that seems to function as a gatekeeper. There's our brains naturally say what's important.
The canary's important is the you know meeting my wife was important and the thalamus gates it and transferred it to cortex. That 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. Like the canary is a kind of traumatic memory. Other memories like Tonawanda like that was like 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. It can be really good or really bad. But if it's high up on the valence 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. But it's very
“clear that it does. And I think that. 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 to him and at a young age theoretically. Exactly. What are the implications of all of this?
Her research which she's learning.
maybe we could help people hold on to some memories that are just really essential to living.
But if you look at early stage Alzheimer's, they often come in and they still have a some functioning. If you could somehow learn to manipulate that gate keeping mechanism, what's happening in the thalamus? If you can go in and say hey there are weak things that are coming in they're not able to be stabilized by the hippocampus itself but if we can awful it 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 percent of it's gone. If 20 percent, 10 percent of it are 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 is 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 the two things
I feel most of them. You mentioned the idea of saving memories that are essential. What memories
are we talking about specifically? I mean recognizing your family that 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 on to. 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, it 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 and our neighborhood, talk it 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 where his home was. But also that 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
interact 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 Antelini.
It was edited by Wendy Dore and engineered by Rowan Nymisto, production assistants in fact checking by Dahlia Hadad, and contains music by Marion Zano and Dan Powell. That's it for the Sunday Daily. I'm Rachel Abrams. See you tomorrow.
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