The Daily - The Mother Who Changed: A Story of Dementia

Episode Date: January 26, 2024

Across the United States, millions of families are confronting a seemingly impossible question: When dementia changes a relative, how much should they accommodate their new personality and desires?Katie Engelhart, a writer for The New York Times Magazine, tells the story of one family’s experience.Guest: Katie Engelhart, a writer for The New York Times Magazine.Background reading: The Mother Who Changed: A Story of DementiaKatie Englehart has reported on dementia for years, and one image of a prisoner haunts her.For more information on today’s episode, visit nytimes.com/thedaily. Transcripts of each episode will be made available by the next workday.

Amongst philosophers who study dementia, there's this story that gets told over and over again, and it's about a woman named Margot. Margot was a 55-year-old woman who suffered from early-onset Alzheimer's disease. She couldn't recognize anyone around her. She spent her days painting and listening to music. She read mystery novels, too, often the same book day after day. The mystery always remained mysterious because she would forget it. But despite her illness, or maybe even because of it, Margot was very happy.

The Margot story presents philosophers with this riddle. Imagine that years ago when Margot was fully competent, she wrote out a formal document explaining that if she ever developed Alzheimer's disease, she would not want any life-saving medical treatment. And more than that, she would want to be killed as soon and as painlessly as possible. This poses the question, which version of the Margo should be listened to? The then Margo before she got sick? The then Margo who never would want to live that way? Or the now Margo, who's sitting before us and who is, by all accounts, happy.

In other words, who is the authentic Margot? From The New York Times, I'm Michael Barbaro. This is The Daily. Across the United States, millions of families are confronting a seemingly impossible question. When dementia changes a relative, how much should they accommodate their new personality and their new desires? Today, Times Magazine correspondent Katie Englehart with one family's experience. It's Friday, January 26th. Katie, how did you first discover this story?

So I've spent a number of years reporting on issues related to older Americans, and I've been particularly interested in dementia and cognitive impairment. And this story actually found me because I'd been writing about this subject. I was receiving a lot of emails from people who had dementia or whose loved ones had it. And there was one that really stood out to me. And that was an email from two women, Chris and Julie Norelius, who were writing to tell me the story of their mother. And what was the story that they told you? The story that they described was effectively one of elder abuse. In this case, what they were

describing wasn't physical abuse or even kind of direct financial abuse, but something a little softer, more like psychological pressure, more like taking advantage of someone's cognitive weakness in order to convince that person that she wants something she doesn't really. But the more I reported on this story, the more complicated it seemed. This wasn't a straightforward story of elder abuse with good guys and bad guys. This was a lot more complicated. We can all hear each other. Yeah. Great. Thank you so much for being willing to chat again. So the first thing I did was call these sisters, Chris and Julie Norelius, and that

really started two years of conversation with them. Sure, starting someplace works. Chris and Julie are separated by a few years, but they act almost like twins. Oh, wow. They look similar. They have virtually the same voice. They complete each other's sentences. And they told me a lot about their family, the Norellius family. Grew up in Denison, Iowa, a town of around 8,000 people surrounded on all sides by cornfields. Their father, Bill, was sort of a prominent figure around town. He was a lawyer and a landowner.

But we spent most of our time talking about their mother, Diane Norellius. My mom was really the center of our family. The sisters described their mother as really the backbone of this happy American family. Dad worked all the time, and so it was up to mom to take care of everything else, and it was a great childhood. She was competent and, you know, a big presence in the area. She served on a school board. She drove a school bus. She was on the state library board. But she was also a very traditional woman. You know, she was a woman of her time. Mom and dad were married in 1957, so it was very much 1950s. Wife at home with the children, husband working.

And she was, by her daughter's admission, quite happy in that role. It was very proper, and mom took pride in that. And probably would have continued that way if things hadn't derailed. Well, what exactly happened? Things for Diane really changed in 2011. Her husband, Bill, died of complications from a broken hip after 53 years of marriage. You have to remember that mom went to nursing school, got out, and pretty much married dad. I mean, she was in her early 20s when she had me.

So she had never lived alone, been independent or anything. So when she loses this man who has been there for her, her whole life, literally, her adult life, I think she was like lost. I mean, she pretended like, don't worry, kids, I'll be fine. But I don't think she knew how to do it by herself, especially without a man. And by do it, you mean? Live her life. Like she made it out like, oh, I feel kind of free now and I can go and do anything I want. But she really didn't. She just watched television. And then Diane started losing more people. To me, the next thing was my brother's health crisis.

Her son Eric died of cancer at 55. That's her only son. That's one of her children. Her daughter, Julie, who had lived next door, divorced and moved to Colorado. Her support group has kind of, to her mind, I think, abandoned her. She was seeing herself alone. And then, almost all of a sudden, a new man appears in her life. And then along came Denzel. Denzel Nelson.

Denzel was known to the family. Denzel Nelson was my father-in-law when I was married to his son. He was actually Julie's ex-husband's father. So a man she'd once been very close with but hadn't seen much of since her divorce. He always had cowboy boots and a cowboy snap down and a cowboy hat on. He was this kind of stocky cowboy figure. He'd worked as a horseshoer for most of his life, but had since retired. I mean, it was a completely different image, you know, in comparison to my father. completely different image, you know, in comparison to my father. I mean, they were like opposites. He was three times divorced. And actually, because he had no finances, he asked if there was any chance he could live in the hired man's house next door to my mom. And coming off his last divorce,

he moved into a little property on the Norellius farm plot. In exchange for helping maintain the yard, like do the mowing and help out with yard work and things there that he could help with. But by all accounts, he and Diane weren't especially close. Well, she said he was disgusting. He dressed like a hick. Mom used the word hick.

And she just thought he was kind of repulsive. She said he smelled bad. She said he'd stop by for coffee sometimes, and she wished that he wouldn't. So they certainly weren't close by any means. Until, seemingly out of nowhere, Diane's views on Denzel completely changed. It was a Sunday. I call mom, and the woman talking to me was not my mom. She was like, I need to tell you something. And then she went on to say, I've invited Denzel to share my life and live in my house with me. I'm sure my mouth dropped open because I was like, what is happening?

She goes, I need you to accept him and love him and welcome him into our family because this is what I want. Their mother called them up and sort of presented this as a done deal. Denzel and I are in love. He's moving into the house. He's the love of my life. It was hard. It was hard to swallow. It really was. But Chris and Julie tried to be accepting of this. You know, for mom's sake, we all adapted. So things were okay for a while. And Diane, you know, she seemed happy.

She and Denzel started spending their days on these drives. They'd drive around the state or to different states. They'd go to antique shows or horse shows or quilt shows. You know, at age 80, Diane was finding a new way to live. But Diane's daughters also noticed changes in her that they found more worrying my mom always was a fashionista she used to make her own clothing suits and her mother had always been very well dressed very you know interested in her appearance but then I came home and she's wearing jeans with a big, wide cowboy belt and this old cruddy horse breeder's baseball cap. All of a sudden she was dressing like a cowboy.

And no makeup, no makeup. And I was just like, who are you? And some of the changes were deeper ones. And she said to me one day, you know, I'm trying to be more assertive. Denzel's training me to be more assertive. Kristen Julie really felt like their joyful, joyous mother was growing sour. She was being aggressive and mean to people. Even Diane's phone calls with her daughters were changing.

They're finding it harder to reach their mother. She's not answering the phone. When she does answer the phone, it seems as if Denzel's always beside her, always sort of coaching her almost on what to say. But I think it was harder and harder for her to understand our conversations when we would talk. They start to feel like their mother is deteriorating in ways they can't quite understand from far away. Hmm. But it's only in September of 2017 that a doctor finally gives shape to what Diane's daughters sort of both knew and couldn't see. I couldn't get a hold of mom and was worried about her.

And I got a phone call from Denzel that said mom was in the hospital. He didn't think it was her heart. They weren't sure. Denzel had taken Diane to the emergency room because she felt short of breath. And at the hospital, she was given a cognitive test. She scored poorly. She didn't know the name of the president, for instance. I decided, you know what, I'm going back to Iowa and I got a plane ticket. Chris actually got a plane ticket too, but I got back there before Chris. So I went to the hospital, um, met with mom. Then Dr. Ingram came in and explained to me that, yeah, you know, your mother, he had diagnosed her with dementia. And it's here at this time that Diane is diagnosed with dementia.

That was the day we went to Vicki's house. Vicki was kind of a friend to mom and to us. And we were so shocked. We're sitting at her bar crying, and she's like, well, of course your mom has dementia. We all know that. We've known that for years. It's around the time that she receives that diagnosis

that Diane starts rearranging her affairs. That's when Denzel was added to the bank accounts. She gives Denzel her financial power of attorney. He was a signer. He could co-sign on mom's checks. She redrafts her will so that if she dies before Denzel, he has the right to live on her property. Basically, it gave Denzel control of almost everything. And she also dissolves her financial trust. This is the trust that her daughter Julie managed, which holds all of her assets and all of her investments. And when Julie checks Diane's bank statements, she starts seeing cash withdrawals of hundreds of dollars at a time. This was especially worrying because they knew that their mother

was worth around $4 million and that Denzel, you know, three times divorced, a retired horseshoer, was worth basically nothing. Denzel had taken mom's phones away. We couldn't talk to her on the phone. We didn't know if she was dead or alive. He wouldn't respond to us anymore. We were scared. All of this just leads Chris and Julie to the conclusion that they need to get to the bottom of what's been happening. I was just sitting in a chair in my living room, and it's like something swept over me and said, you need to go to Iowa right now. So what do they decide to do?

Their first step is to call a lawyer, and the lawyer recommended that they obtain what's called a temporary protective order, basically an emergency restraining order that would force Denzel to move out of the house and stay away from Diane. And the sisters hoped to really give them a chance to sit down with their mother away from Denzel's influence and really get to the bottom of what was happening. And that's what the restraining order would, in theory, do, right? It wouldn't get Denzel arrested, but it would get him out of the house. That's right. So as the lawyers sort of working away on this paperwork,

Chris and Julie get on a flight home to Iowa. It was, I think, on a Thursday that we flew in to Omaha. It's October 2017. They drive up to the old farmhouse. Our level of fear driving up that driveway was unreal because we didn't know how Denzel was going to react. We didn't know how soon the police were going to be there. Walking up to that door was the most frightening moment of my life.

They knock on the side door. They describe their mother answering, and her initial response to them being there is to hesitate. She just stood there, and I said, Mom, can we come in? And she goes, oh, yeah. You know, like, she was startled. Like, of course you can come in. When the daughters walk into the house, they are shocked by what they see. This farmhouse, which was once scrupulously tidy, now just looks unkempt. In the kitchen, the landline phone is missing and the shelves are basically bare. The only food that Diane seems to have in the house is a freezer full of ice cream cones. On the stove, there's this piece of masking tape

with Denzel's handwriting on it. It says, do not use in big letters. On the doorframe, there's this piece of wood that's just blocking access to the staircase. When we go in, we find our mom incapable of doing anything or understanding why we were there or anything. And their mother just seems completely out of it. Her curly white hair, which is usually perfectly styled and puffed,

is flat around her neck as if it hasn't been washed. Her watch is on upside down. Her words come out slurred. Eventually, Diane kind of gives up and goes into the bedroom and just lies face down on her bed. So Chris and I just tried to make conversation, hoping and praying that the police would come driving up the driveway. As expected for the daughters, two sheriff's deputies pull up. And I looked at Chris like, oh, you know, because I didn't know how he was going to react. I was terrified. The deputies explained that under the terms of the order, Denzel would be immediately removed from Diane's home and, quote,

restrained from committing further acts of abuse or threats of elder abuse, charges that Denzel immediately denied. Chris went straight back to the bedroom so that she could be with mom because I said, I don't want mom to be upset or to wake up to any of what's going on so in this sister's telling denzel runs into diane's bedroom where she's sleeping and he's screaming at my mom diane diane do you know what those girls have done do you know what they're doing to me start screaming at the top of his lungs. It was utter chaos. And then is sort of forced to leave the home. The look on his face when he walked out that door was, I wish you were dead. He was furious.

I don't think Chris and Julie really had plans for what would come next. And I think what surprised them most on that initial day was that none of this seemed to register for Diane at all. You know, when the police left, she fell asleep. The first thing she said when she woke up from her nap, despite having witnessed, you know, this whole scene before her was, where's Denzel? And she asked it again and she asked it again and all evening

and in the middle of the night and the next day too. She didn't even know where he had gone. And I think the daughters, you know, they tried to explain to their mother what was happening. Can I ask a question? Yeah, but you don't necessarily get an answer. Later, I listened to this long conversation that Chris recorded on her phone. Did you terminate my general power of attorney? And you can hear Chris and Julie, you know, ask questions of their mother. What do you mean general power of attorney?

Just, I had a, I know you terminated my trust, but did you also terminate my power of attorney? What is the power of, not to my knowledge, what? Okay. Why? And Diane's responses are really shocking. She says, you know, what's the power of attorney? And there are changes she doesn't remember making.

You know, I could grasp nothing about the trust. All I know is it was there, and you doled it out. I never doled anything from your 12. She's using it. But while Diane clearly doesn't understand, you know, the precise financial and legal decisions that she made, her motivation is very clear. A long time ago, after Dad died, we did this. You asked me, you said, Mom, you know, do you want to take care of their trust? And I looked at you and I said, Honey, I don't know if I know the first thing about that sort of thing.

I'm like, do you want to do it? And you said, I'd be happy to. And I said, OK, I don't know if I know the first thing about that sort of thing. Do you want to do it? And he said, I'd be happy to. And I said, okay, go ahead. Okay. So I can remember saying that. But now I've got the feeling, and it has nothing to do with Denzel. He's got his own money. I've got my own money.

I want to be able to be my own person before I die. She tells her daughters, I want to make my own decisions. I want to be in charge of myself until I die. I knew that I had given you control of it for me before, because I didn't have a clue clue and my mind wasn't working very well anyway. Probably better than it is now. But I want to be my own person. I'm realizing, Katie, in this moment that I don't really understand what the law has to say about this complicated situation. I mean, here, Diane is asking to see Denzel, who has just been removed from the house per that protective order. And Diane is taking actions like giving him power of attorney, but she's been given a diagnosis of dementia. And that recording you heard suggests

she doesn't even understand what power of attorney is at this moment, both of which runs contrary to the idea that she's really capable of being in control of her life and these kinds of decisions. So what does the law say about that? Yeah, this definitely confused Diane's daughter, and it confuses a lot of adult children of people with dementia. Adult children often assume that, you assume that the moment a doctor pronounces a person to have dementia, that kind of flips a decisional switch. And all of a sudden, that person is now legally and medically incapable of choosing for herself anymore.

The reality is that there's no such switch. Within modern medicine, patients are never declared completely competent or incompetent in some holistic sense. Instead, doctors are asked to look at individual choices and whether or not a person is able to make a specific choice in a specific moment. This in practice can mean that a person with dementia can retain the ability to make choices for many years and then lose the ability in stages so lose the ability to make complex choices first and then simple ones later and this is important from a legal perspective too because it means that people with dementia retain the ability to make legal choices even when they are cognitively impaired. But of course, this often creates conflicts within families because there's no clear-cut

medical way to determine without error that a person is capable of making a specific choice. So based on what you just said, the daughter's options would seem to be pretty limited here. So what is their next move? It's clear to Chris and Julie that their mother had been very effective at hiding the extent of her impairment from them. At this point, Diana is still speaking well, and she can be engaged in conversation. So her daughters decide that it's probably going to be important for them to get some evidence that their mother is actually very sick. And their decision is to bring her to the University of Iowa Hospitals and Clinic,

where they know there's a dedicated geriatric psychiatry unit where their mother can get a more formal assessment. And so we sat mom down and explained it to her as best we could without having it sound scary, like we're taking you to a hospital. And they're telling Diana Grease to go. She helps to pack her bag. She gets into the car. And they all start in on this hours-long drive to the hospital.

Everything stayed quiet in the car for quite a while we got to Des Moines and my phone rang and it was our attorney's mother who's a nurse it's sometime around sunset and mom said who is that I said Eileen well can I talk to her of course that Diane starts getting upset. So she gets the phone, Eileen, I'm being kidnapped. Please call the police. Come and get me. I'm being kidnapped. And Eileen. At some point, she throws a book at Julie. She starts hitting Chris. And I had to grab her wrist to keep her from continuing to hit me. She's screaming that she doesn't know where she is and is being, you know, driven somewhere against her will. Yes, it was terrifying. Physically, it's the voice, it's the body, it's everything that nurtured you before. And suddenly, it's like she's possessed.

After a few minutes of this, the sisters decide they're going to call an ambulance and have an ambulance drive Diane the rest of the way to the hospital. When they get there, Diane's given a cognitive assessment. And what's shocking is that, you know, while Diane has been operating more or less normally in her life, she actually has very significant deficits. The neuropsychologist who tests her describes deficits in almost every field that he tests for and decides that Diane is unable to safely perform tasks as complex as preparing a meal. In his final report, he describes Diane as having significantly limited capacity for informed personal,

medical, and financial decision-making. Later, a doctor helps to kind of interpret these findings, and she uses the phrase Alzheimer's disease for the first time. In her view, Diane is already at a late moderate stage, so far beyond the kind of mild forgetfulness that had started to worry her daughters. So the kids wanted to know how bad things had gotten for their mom, and now they know. I mean, they have a very serious diagnosis now. Right. And that really convinces them that they need to take control of the situation in a more formal way. So talking to their lawyer, Chris and Julie decide that they're going to focus on getting legal guardianship of their mother, which will effectively give them

control over many of her personal and medical choices. And they're convinced that, you know, this will be a fairly straightforward case and that once they get guardianship, they'll be able to kind of fix everything. But it's also at this point that their personal relationship with their mother really evaporates. Diane is moved from the hospital to an assisted living facility in Denison. And because the elder abuse charges against Denzel have been dropped, she's able to start seeing him again. And once that happens, Diane quickly makes the choice to stop seeing her children. She tells pretty much everyone she knows, everyone she sees, that she wants nothing to do with them, that she doesn't want them to visit. At one point,

she even tells a friend she doesn't have daughters anymore. Yeah, hello? Hi, dental. Hi. There's this recording of a phone call. I'm not sure where to start, so I'll tell you what I planned on saying, and that is that I would be happy to sit down and talk with you and Nana. Well, I don't know. I'll have to get back to you. Please let me tell my grandmother the same thing. I'll let you tell her. Julie's daughter, Haley, calls her grandmother, Diane, and tries to mediate the situation. Hello. Hi, Nana.

Hi. Over the course of the call, you really hear Haley try to make the case that... I love all of my family. I love you both. I love my mother and aunt. You know, this has just got out of control. Chris and Julie love their mother. I need you both to know, and I need especially Denzel to know, that from my perspective, there are opportunities for everybody to come together and everybody to be happy, especially Nana. There's got to be some way to resolve this. It's up to Nana whether she accepts him again.

Not them and Nana. It's up to Nana. And she has chosen to write them off. Not them and Nana. It's up to Nana. And she has chosen to write them off. Tell them. I have chosen to write them off, yeah. And Diane, for her part, she speaks very lucidly. I know there's an easy way out of this, and there is not. I can't handle much more stress.

And the only way I can get rid of that stress is to get rid of what's causing the stress, which happens to be your family. I'm sorry. She says quite clearly there's not a way to move on. And I don't know what else to do to save my life. And if the only thing I can do is for you, then I have to accept. I'm sorry. Don't be. Goodbye, Hayley.

I want you to know I love you. Don't be. Goodbye, Hayley. I want you to know I love you. Goodbye. Bye. We'll be right back. Hello. Hi, Mr. Nelson. Thanks so much for getting back to me again. Can you hear me okay? Yes. Okay, Mr. Nelson. Thanks so much for getting back to me again. Can you hear me okay?

Yes. Okay, great. And thanks for those... So, Katie, you eventually spoke with Denzel about how he saw his relationship with Diane and with her family. So in his mind, how did all of this play out? So Denzel also describes falling in love as sort of sudden and unexpected. Well, one day I decided I was just going to go for a drive.

And Diane was out working in the yard. She says, what are you up to today? And I said, you know, it's a nice day. I'm going to get in the truck and just go for a drive. When I first got in touch with him on the phone, he told me this long story about falling in love with Diane and his truck. I said, you want to come along? And she said, well, where are you going? I said, I don't know. She said, well, yeah. And that day they took their first drive.

Soon one drive became regular drives and then longer drives. They took trips to horse shows and quilt shows and antique sales all around the state. One of the first trips we made, it always tickled me because her husband was an attorney. And every trip they ever went on, they had to be certain such a place because they had a motel. You know, these trips were themselves kind of an entirely new experience for Diane. And the first trip we went on, we just took off. She says, where are we staying tonight? And I said, well, where do you want to stay?

Diane, he said, was amazed to learn that Denzel never booked a motel room in advance. He just got in his car and drove and drove until he felt like stopping, and then he'd stay at whatever motel happened to have space. So she liked how it was kind of more spontaneous traveling with you. The spontaneous deal was something that just really tickled her. And Denzel says that on those longer trips,

they would sometimes stay overnight at a motel. In the beginning, of course, they're just friends, so they would sleep in two separate beds. He talked about leaving the room to go outside while she got dressed, and he'd do the same for her. But then one night, as he told it, Diane just climbed out of her bed and into his arms, and he thought at that moment about how she was the gentlest person he'd ever met.

Finally one day. Well, anyway, we ended up in a big house. And I was invited. And so this relationship just blossoms. We had some really, a couple, three really good years there. From, oh, 2013 until they saw me at the fan. until they saw the fan. When Denzel moved in,

you know, he knew that Diane's daughters weren't really accepting of the relationship. Chris never did like the idea that I was living in her dad's house. But he also didn't really care. You know, it wasn't her dad's house anymore. It was her mother's house. I think Denzel felt like, you know, Diane wasn't her dad's house anymore. It was her mother's house. I think Denzel felt like, you know, Diane was a grown woman and she was entitled to make her own decisions. And it didn't really bother him whether a couple of daughters who lived out of state approved of him or not.

But later, I think Denzel started to butt heads more with Chris and Julie. It seemed to him that Diane's daughters were interested in controlling things for their mother. You know, he was surprised to learn that even Diane's social security check went straight into an account that was managed by Julie. And he described being sort of disturbed to learn that whenever Diane wanted to do anything major, like trade in her car for one she liked better, she had to go through Julie, who was the trustee of her trust. Did it bother her that Julie was kind of in charge of things, or did she like it because it was easier?

No, she hated it. Yeah. She was perfectly able to take care of her own bills and everything. to take care of her own bills and everything. I'm curious what Denzel's interpretation and recollection is of the day that Diane's daughters show up with that order forcing him to leave the house. I think he was completely amazed by it. I was home and I saw Chris and Julie come up to the door.

And I told Diane, I says, there's going to be trouble. He didn't see it coming at all. And then the sheriff showed up and they had a restraining order and they hauled me out of the house. And I heard Chris tell Diane, Denzel did something illegal and you're never going to see again. In Denzel's version of events, he doesn't resist at all. He goes into Diane's bedroom to say goodbye to her. I told Diane, I said, be tough, honey. He gathers his various medications and gets into his car and drives away.

various medications and gets into his car and drives away. And I think Denzel was completely taken aback when he heard the specific charges that he was accused of. They charged me with elderly abuse. Just one lie right after another. Certainly the phrase elder abuse struck him as being entirely inappropriate. Denzel ended up giving me a copy of his diary from that time, and he called them the Sin Sisters, kind of coming in and making up stories about him hurting this person who he loved more than anyone else. They said I wasn't eating right or we weren't eating right. That's the lies they told.

And he had his own explanation for things. Most of the time we went out to eat because we cooked. And Diana cooked all her life. As for the cupboards being bare, well, Denzel said the cupboards were bare because

he knew that Diane had spent 50 years of her life cooking for other people, and he thought it would be nice for her to be taken care of. They said there was some mold in there, and there was no mold. As for the house being dirty, again, he said it looked okay to him.

But anyway, he didn't like to see Diane on her hands and knees scrubbing the floor, and anytime he did, he told her to get up and not worry about it. He would take care of things. So Denzel, you know, he left the house as he was forced to do. But I think from that moment, he had every intention to fight Diane's daughters for what he saw as Diane's freedom and liberation. What about the decline of her memory? Which, of course, is at the heart of all the legal maneuvers that his daughters are undertaking.

What does he say about that? He really denies that at this time Diane was sick? No. He was not having any memory issues. So in your opinion, she didn't really have dementia right when this all started? She got it later? No. No.

Sure. He noticed Diane was a little less steady on her feet. And, you know, maybe her memory wasn't what it was at the age of 30 or 40, but he didn't see it as being some big serious thing. A lot of people have a bit of dementia. And I think his view was that Diane was more or less unchanged and certainly not changed to the point where she needed someone to be caring for her all of the time. He was prepared to care for her in whatever way he said she needed. So what does Denzel do after he and Diane are forcibly separated? So the first thing he does is leave the house, as he's ordered to do.

He moves in with his son. I just, well, I kind of went nuts. I mean, couldn't connect with her, couldn't call her or nothing. But once Diane's transferred to the assisted living facility, he's given visitation rights again and he starts visiting her every day.

Most morning, I'm an early riser, always have been. I wake up at four o'clock, I don't care what time it would have been. And so I'd wait around until seven when I could go out there and go to breakfast with her. He shows up at 7 a.m. He stays 12 hours. He goes for little walks with her around the building. He calculates that if they walk around the building 10 times, it's a mile.

They'll walk it twice. He sits with her while she naps. We played a lot of cards and watched TV and sat out in the porch swing. And he says that oftentimes in the night he would get a call from the assisted living facility and a nurse would tell him that Diane was crying, 2 a.m., 3 a.m., that she was crying and she wouldn't stop and they'd ask if he could come. But many nights they'd call me that Diane was having a bad time. Was it just because she was sick or she was lonely, do you think?

She just, with what her daughters did to her, and then maybe they tried to call that day or something and she wouldn't talk to them and then she'd be thinking about it. Yeah. How would you settle her down hug her yes sir tell her everything was going to be all right and as denzel tells it you know diana's very clear throughout this whole time that she loves him that she wants to be with him and and that more than that, she doesn't want to see her daughters anymore. And Denzel sees it for himself, he says. You know, when Chris and Julie call, Diane's asked if she wants to take the call,

she always says no. As Christmas approaches, Diane sends word to her daughters through her lawyers that she doesn't want to see them at all. And I think Denzel really feels, heading into the guardianship case, that he has a really good chance of winning because, isn't it obvious? Diane is telling everyone that she wants Denzel and shouldn't it be her choice?

Well, eventually a court had to make that decision. Tell us what happened during this trial over guardianship for Diane. Well, in a way, this kind of routine trial in this small town in Iowa became this larger philosophical debate over which version of Diane should be listened to. You know, Chris and Julie made the point that their mother had for years told them if she ever got dementia they should be the ones to take care of her she trusted them to make the right decision for her denzel on the other hand argued that none of that really mattered because the version of diane who was sitting in front of them all was saying something very different. She was saying she wanted him.

So in the end, it was a question of, what does Diane really want? Is it what she's saying she wants there in the moment in court? Or is it what she said consistently for all the years before her mind became impaired? And ultimately, what does the judge decide? In the end, neither of those two sides wins. The judge decides that Chris and Julie won't be suitable guardians, in part because they live out of state,

but also because they don't seem to be taking their mother's wishes into consideration when making decisions for her. On the other hand, the judge thinks Denzel will be unsuitable because he really seems to underappreciate how sick Diane is. He says over and over in court that she's not sick at all, as far as he knows. So the judge takes this middle course and appoints one of Diane's friends, Marsha, as far as he knows. So the judge takes this middle course and appoints one of Diane's friends, Marsha Losh, as the guardian. Hmm. And what do both sides end up making of that middle course, starting with Denzel.

I think he still feels liberated by the decision. That's who Diane wanted. When they asked Diane who she liked to be her guardian, she said Marcia. And of course... He's friendly with the woman who's appointed guardian. And with her permission, he gains the right to see Diane whenever he wants, also to move back into her house. I was there three times a day to see her when she was there, when I could.

Three times a day. And so he kind of continues doing what he'd been doing before, visiting her every day, spending the day. I mean, I knew she was getting worse. That dementia only went one way. Yeah, yeah. And I realized that when I get there and... He does start to notice at this time that Diane isn't what she used to be.

Well, I'd help her put her makeup on. And I think that was probably the first thing I noticed. It sort of starts with her makeup. I mean, she was a very attractive lady. She was a lady and it bothered her that she couldn't, her hands, you know, were shaking and that. And so I actually helped her put her makeup on. I probably didn't do a real good job, but I helped her put her makeup on every morning. And it was important.

And as Diane's dementia got worse, she's moved to a different facility, a nursing home with a specialized memory care unit. But Denzel keeps visiting her there, and his visits continue until 2020, the pandemic. The COVID. Yeah. When the COVID started, then, you know, I couldn't get her out of there anymore. Diane some days seemed to understand what was going on, but other times seemed to know nothing of the pandemic.

And it got to where it was hurtful. She would, a few times she said, I know you can get in here, you just don't want to. You know, and that really hurt. Because she understood COVID at first, but then it got to where she didn't understand the COVID. Yeah. COVID at first, but then it got to where she didn't understand the COVID. Yeah. She accused Denzel of choosing not to visit her, of being allowed to come inside, but not wanting to. We just had a really good few years there, but that all ended. That dementia is, to me, is worse than cancer.

And then eventually, it became less clear to Denzel that Diane always knew who he was. And it was around that time, he says, that he stopped visiting. And it's an untidy goodbye. And it's incomplete. It's just one day a visit is hard, and then that's the last that Denzel ever sees Diane again. So let's return to Chris and to Julie.

What do they do after they find out about the judge's decision in the Guardian case? So Chris and Julie go back to their respective homes, and immediately they start working on an appeal, but they also continue this relentless sort of effort to get in touch with their mother. But their calls wouldn't be put through. They'd get friends to call too sometimes and just try desperately to get word of Diane. And none of that worked until... This is Erin. Can I help you?

Hi, Erin. Can I speak to Diane Norelius, please? Yes, just a minute. Okay. Diane Norellius, please? Yes, just a minute. Okay. One day, Julie's friend Mary calls the nursing home and to everyone's surprise, she's put through to Diane. Hello. Hello, Diane. This is Mary. I called you last week. Yeah. How are you doing today? I'm getting better. You're getting better. Okay. Mary and Diane were able to talk a couple of times, and it was clear that Diane's cognition was very diminished at this point. She seemed confused.

A lot of what she said didn't make a lot of sense. But what was clear was that she was unhappy where she was living, in this basement unit of the local nursing home. So I called your daughter, Julie, and she's finding you a different place to live. Oh, really? Yes. Oh my goodness. I was able to listen to one of the calls and on it, Mary tells Diane that she's been in touch with Chris and Julie and that they're going to try to get her moved to a different, better facility. Well, don't cry. Don't cry.

Diane just breaks down in tears, and she says it would be so wonderful, and she's so happy to hear that her daughters are maybe going to help her. They're going to come and see you as soon as they can, you know. Is that okay? Yes, absolutely. Absolutely, have them come and see you. But at the end of the call... Okay, Diane, I'm going to let you go.

I'm going to call Julie right now. Okay. And then I'll call you back. Thank you, sweetheart. You're welcome. You're the sweetheart. Diane forgets to hang up. And Mary just sort of stays on the line for a few minutes. minutes. And you can hear Diane crying softly in the background and then sitting in silence for a while. And then you can hear a nurse come in and she asked Diane if she's okay. She tells the nurse they hate me. They call me bad things.

So in September 2020, a court finally agrees to Chris and Julie's request that Diane be moved to a more specialized facility in Omaha. Almost immediately after arriving, she is put on hospice care. Doctors decide that she is dying and doesn't have very long to live. She is dying and doesn't have very long to live. And it was then that a judge finally signs this order granting Chris and Julie the right to see their mother for the first time in over two years because of the state Diane's in. Chris is immune compromised

and decided that it wasn't safe for her to travel during the pandemic, but Julie gets in her truck and she drives nine hours to Nebraska. Walking through her threshold, I mean, the anxiety, the fear of, you know, I haven't seen mom for, what, Chris, three years? I haven't seen my mother. And she ends up spending four, as she describes them,

completely pleasant and wonderful days with Diane. and she was so happy. And then she laid down, and I tucked her in under her little blankie, and she said, oh, stay here by me, stay here. So she held my hand, and I just laid down beside her. And sometimes Julie says Diane seems to maybe ask about Denzel. She asks, where's that man? Where's that man?

A few times. But she never calls him by name. I can't tell you how hard it was to have to leave that last day. When I left, the feeling I had was that this is how it should have been from the beginning. In January of 2021, Chris and Julie are granted guardianship of Diane. And they call each other. They can't believe this has finally happened. They start planning a trip together to see their mother. But four days later, before they could take that trip, Diane dies at the nursing home.

Katie, it occurs to me that in the story that you have just told, everybody involved was hurt in some way, and hurt deeply. The daughters, Denzel, Diane. So how do you think about why there was so much pain in this story. Is this really about bad decisions made by the people that we have been talking about? Or is this about a bad system that we have for handling people with dementia?

Or is it both? I think as a journalist, I often write stories where there are, in the end, good guys and bad guys. And that's not how I felt in this case. I really felt that everyone involved in this story was kind of arguing and fighting in good faith. Everyone loved Diane. I think, you know, in part, there are weaknesses in the system. I mean, if you look at someone who has dementia, that person might live with the diagnosis for years, slowly deteriorating. And there's no clear and obvious and easy to measure point at which a person with

dementia loses the ability to do something for herself and then loses the legal right to do it. I think that's just an inherent difficulty with the disease. The medical system can try and the court system can try to locate that point, but it's not going to be easy. And certainly a person with dementia, a person like Diane, can remember things and forget things and remember again in the course of a day. So what do you do with that? Mm-hmm. But I think beyond that, in many ways, Denzel and Diane's daughters were just living with different versions of the same woman. And I think given how they knew Diane, this is understandable. The daughters

were committed to the then version of their mother, the pre-dementia version of their mother, the one they'd lived with for decades, the one who had been clear about what she wanted at the end of her life. And they felt obliged to, even when that woman seemed to disappear, to recall her and to honor her, what she wanted. And Denzel, on the other hand, only had the woman who was sitting in front of him at the moment.

And he felt that he loved her and that the right thing to do was to listen to her, to listen to what she was saying and to take it at face value, not as some pathological symptom of a cognitive impairment. And so he was in a way advocating for the Diane who was diminished. And I think even amongst academics who debate this, you know, this is a contested subject. Who's the authentic person? Who in this case was the real Diane? I mean, have you come to a conclusion of your own

after spending all this time with the family, with Denzel, and with the documents? I mean, which one was the real Diane? The one the kids remembered and wanted to honor, or the one who fell in love with Denzel? I think it's hard to say who the real Diane was, but I do know that as a society, with our medical system and our legal system as they are, we're moving in the direction of honoring Denzel's version of Diane.

It used to be, you know, in the early 20th century, that just having a diagnosis of dementia basically meant that you were stripped of all your decision-making power, stripped of all your civil liberties, and put under the control of other people. And we've moved away from that system. And we've moved towards a world in which we hope even people with significant disabilities and impairments can live with some autonomy. And in the case of dementia, that means increasingly listening to what a person with dementia says she wants, even if it's different from what she said she wanted for decades and decades of her life. And I think that is understandable from a political or legal standpoint,

but very, very challenging for the adult children of people with this disease. Right. Because they have to live with the reality that the now version of their mother or their father or their sister or their brother is the one that the system privileges and prioritizes. Yeah. And I think it can be terrifying for, you know, the rest of us too. We can tell our children what we want to happen to us when we're older.

In the event that we get sick, we can write out documents outlining our wishes. But in the end, they might just not be listened to. Because in the throes of the disease, we might change our minds. And that can be very scary. You know, I feel like I know who I am. And it's frightening the thought that some different impaired version of me might actually have both the ethical and the legal authority to usurp what I decide I want. Well, Katie, thank you very much. We appreciate it.

Thank you for having me we'll be right back Here's what else you need to know today. U.S. officials and outside experts tell The Times that North Korea's leader, Kim Jong-un, has shifted to a policy of open hostility towards South Korea and could take some sort of lethal military action against the country in the coming months. They said that Kim has been emboldened by a growing partnership with Russia and by his conclusion that the United States military is in global retreat since withdrawing from Afghanistan in 2022. Today's episode was produced by Luke Vanderplug, with help from Claire Tennisgetter and Diana Wynn. It was edited by Michael Benoit, contains original music by Dan Powell,

Marion Lozano, Pat McCusker, and Diane Wong, and was engineered by Alyssa Moxley. Our theme music is by Jim Brunberg and Ben Lantifer of Wonderly. That's it for The Daily. I'm Michael Barbaro. See you on Monday.