The Mother Who Changed: A Story of Dementia

amongst philosophers who study dementia. there's this story that gets told over. and over again and it's about a woman. named. Margo Margo 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 ownness or maybe even. because of it Margot was very. happy the Margo Story presents. philosophers with this riddle imagine. that years ago when Margo 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 and more than that she.

would want to be killed as soon and as. painlessly as. possible this poses a 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 Marco who's. sitting before us and who is by all. accounts. [Music]. happy in another words who is the.

authentic. [Music]. Marco from The New York Times I'm. Michael babbaro 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 DES.

desires today Times magazine. correspondent Katie Englehart with one. family's. [Music]. experience it's Friday January. 26th Kitty how did you first discover. this. story so I 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've been writing about this. subject I was receiving a lot of emails. from people who had dementia whose loved. ones had it and there was one that. really stood out to me H and that was an. email from two women Chris and Julie. nurelias 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 um even kind of direct. Financial abuse but something a little. softer more like psychological pressure. or 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 the 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 and so the first. thing I did was call these sisters Chris.

and Julie nurelias 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. you and I were like that's enough. W 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 nurelias family. grew up in Dennis in Iowa a town of.

around 8,000 people surrounded on all. sides by corn fields their father bill. was sort of a prominent figure around. town he was a lawyer and a land owner. but we spent most of our time talking. about their mother Diane nurelias. my mom was. really the center of our family the. sisters describe 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 my memories confident 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 19 50s wife at home with the.

children husband working um and she was. by her daughter's admission quite happy. in that role was it was very proper and. mom took pride in that and probably. would have continued that way if things. hadn't. derailed 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 um 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 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 is 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.

denel. Nelson uh 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 uh. 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 it's since retired I mean it. was a completely different image you.

know in comparison to my father I mean. they were com like. opposites he was three times divorced. and actually because he had um 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. prop on the nurelias 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 certain weren't close. by any means until seemingly out of.

nowhere Diane's views on Denzel. completely. changed it was a Sunday I called 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 d 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 but Chris and Julie tried. to be accepting of this you know for. mom's sake we all. adapted so things were okay for for a. while and Diane you know she seemed.

happy she and Denzel started spending. their days on on these drives they drive. around the state or to different states. they' 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 I came home and. she's wearing jeans with a big wide. cowboy belt and this old creddy horse. breeders baseball cap all of a sudden. she was dressing like a cowboy and no. makeup no makeup and I 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 Chris and Julie really felt. like their joyful joyous mother was. growing mom wasn't s assertive she was. being aggressive and mean to people even. Diane's phone calls with her daughters. were changing there started to be this. the gradual isolation that um Mom wasn't. calling as much I'd call her and oh.

she'd be busy I'll have her call you. back 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 um they. start to feel like their mother. is deteriorating in ways they can't. quite understand from from far away.

[Music]. H 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 their. 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 um 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 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 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. hm basically it gave Denzel control of.

almost everything and she also dissolves. her financial trust this is the trust. that her daughter Julie managed um which. holds all of her assets and all of her. Investments and when Julie checks. Dianne'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 the 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 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 as a lawyer. sort of working away on this paperwork. Chris and Julie get on a flight home to. Iowa and 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 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 described 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 walked 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 door frame 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 and as expected. for the daughters two sheriff's deputies. pull up and I looked at Chris like oh. you know CU I didn't know how he was. going to react I was terrifi 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 you so in the sister's telling. Denzel runs into Diane's bedroom where. she's sleeping supervised 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 starts. screaming at the top of his lungs it was. utter chaos it was chaos for 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. [Music]. Furious I don't think Chris and Julie. really had plans for what would come. next and I think what surprised the most. on that initial day was that none of. this seemed to register for Dian 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. H can I ask a. question yeah but you don't necessarily. get an answer oh what 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 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. you doled it up that's I didn't I never. doled anything from your well she's. using but well Diane clearly doesn't. understand you know the precise. financial and legal decisions that she. made her motivation is very clear um a. long time ago when after dad died we did. this you asked me you said Mom you know.

I could would you want to. take care of of their. trust and and I looked at you and I said. honey I don't know if I know the first. thing about that sort of thing uh do you. want to do it and you said he be happy. to and I said okay go ahead okay so um I. can remember saying that but now I've. got the. feeling and it has nothing to do with. Denzel uh he's got his own money I got.

my own money uh I want to be able to be. my own person before. I 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 of it for me. because back before because I didn't. have a clue in my mind wasn't working. very well anyway um probably better than. it it is now but uh 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 know 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 and they're telling Diana.

grees 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 De Moine. and my phone rang and it was our. attorney's mother who's a nurse it's. sometime around sunset going and Mom. said who is that I said eileene well can. I talk to her of course that Diane.

starts getting upset so she gets the. phone e 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's doesn't know where she is and is. being you know driven somewhere 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 or. describes deficits in almost every field. that he tests for and decides that Diana. 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 decisions 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 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 Diana's.

moved from the hospital to an assisted. living facility in Dennis 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 hello hi Dental. hi there's this recording of a phone. call 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 N 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 and tries to mediate the. situation 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 denel 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 them again not D. Nana it's up to. Nana and she has chosen to write. I have chosen to write them off here and.

Diane for her part she speaks very. lucidly I I know think there's an easy. way out of this and there is not I can't. handle much more. stress um and the only way I can get rid. of that stress is to get rid of what. causing distress which happens to be. your. family I'm sorry. she says quite clearly there's not a way.

to move. [Music]. on and I don't know what else to do to. save my life and that's the only thing I. can do is for than I have to accept I'm. stor I want you to know I love you. goodbye.

[Music]. bye we'll be right. back.

hello hi Mr Nelson thanks so much for uh. for getting back to me again um uh 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 denel also describes. falling in love is sort of sudden and. unexpected well one day I decided I was.

just going to go for a gr mhm and Diane. was out working in the yard and 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. of 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. [Music]. know she said well yeah but she 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. MH it always tickled me because. her husband was an attorney and and.

every trip they ever went on they had to. be certain set your 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 when we just took off she. says where are we staying tonight and I. said well where are you want to St Dian. 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 the big. house and I was invited and so this. relationship just blossoms it was we had. some really a couple three really good. years there from oh 2013 until they all.

the. fan when Denzel moved in you know he 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 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 I'm curious what zil'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 saw him and I saw Chris and. Julie come up to the door and I told Ian. 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. restrain training order and they hauled. me out of the house and and I heard.

Chris tell. Diane Denzel did something illegal and. you're never going to see 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 and I think Denzel was. completely Tak back when he heard the. specific charges that he was accused of.

they charged me with uh 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 well that's. that's the lies they told you know and. he had his own explanation for things. most of the time we went out to. eat because we could and Diana took all. her lives 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 and not worry about it he. would take care of. things H 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 as Diane's freedom and 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. issues so that she didn't 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 Dianne 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 I. could have went nuts I mean. uh couldn't connect with her couldn't. call her or nothing but once dian'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 4:00 I. don't care what time I go to bed and so. I'd wait around till 7 when I could go. out there 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 watch TV and set out in the. porch sling and and he says that often. times in the night he would get a call. from the assistant living facility and a. nurse would tell him that Diane was. crying 2:00 a.m. 3:00 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 what was she was it.

just cuz she was sick or she was lonely. do you think she she just uh with what. her daughters did to. her and then maybe they tried to call. that day or something and she wouldn't. talk to him and then she'd be thinking. about it yeah how would you settle her. down hug her kiss her tell her. everything was going to be all right and. as denel tells it that you know Diana's. very clear throughout this whole time.

that she loves him that she wants to be. with him 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 it's. 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 Cas that he has a. really good chance of winning because. isn't it obvious Diana 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 now 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 Dian friends Marshall L. as the. [Music].

guardian H 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'd. she like to be her guardian she said Mar. sh 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 she was 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 but I I mean I knew she was. getting worse that dementia only went. one way yeah yeah and I get realize it. 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. real lady and it bothered her that she. couldn't her hands you know were shaken. and and that and. so I actually helped her put her makeup.

on after I didn't do a real good job. but but I uh 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 then. keeps visiting her there and his visits. continue until 2020 the pandemic the.

co yeah when the co 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 was Cel she. would uh 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 she understood Co at first but then.

it got to where she didn't understand. the co 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 judges 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 in touch with their mother but their. calls wouldn't be put through they'd get. friends to call too sometimes and and.

just try desperately to get word of. Diane and none of that worked until this. is Aaron can I help you hi Ain can I. speak to Diane nelius 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.

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 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 I I don't know I don't know. what to to say 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. coming see you but at the end of the. call okay Diane I'm gonna let you go I'm. gonna call Julie right. now okay and then and then I'll call you. back thank you sweetheart you're welcome.

you're the sweetheart you're the Diane. forgets to hang. up and Mary just sort of stays on the. line for a few. 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 Diana if she's.

okay she tells the nurse they hate. me they call me bad. things so in September 20 20 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 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 2 years. because of the state dian's in Chris's. immune compromise and decided that it. wasn't safe for her to travel during the.

pandemic but Julie gets in her truck and. she drives 9 hours to. [Music]. Nebraska walking through her threshold I. mean the anxiety the fear of you know I. haven't seen Mom for what Chris three. years hadn't seen my mother and she ends. up spending. four as she describes them completely. Pleasant and wonderful days with Diane I. went in and and Mom was in bed she was.

very weak um but I sat beside her she. sat up we talked we hugged we kissed we. giggled and she was so happy and then we. she laid down and I tucked her in under. her little blankie and and she said oh. stay here by me stay here so she held my. hand and I just laid down beside her and. and sometimes Julie says Diane. seems to maybe ask about Denzel she asks. where's that man where's that man a few.

times feeling but she never calls him by. name I I can't tell you how hard it was. to have to leave that last. day when I. lefted the feeling I had was that this. is how it should have been from the. [Music]. 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 4 days later before they. could take that trip Diane dies at the. nursing. [Music]. 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. denel 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 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 mhm.

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 MH 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 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 as a 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 uh you know. 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. [Music].

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 throws 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 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. [Music]. want. KD thank you very much we appreciate it.

thank you for having. [Music]. me we'll be right. back. here's what else you need to another day.

us 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. [Music]. 2022 today's episode was produced by. Luke Vander plug with help from Claire. tennis and Diana win it was edited by. Michael benoa contains original music by. Dan Powell Mar and ano Pat mccusker and. Diane Wong and was engineered by Alyssa. Moxley our theme music is by Jim.

brunberg and Ben lansberg of. [Music]. wonderly that's it for the daily I'm. Michael baboro see you on. Monday.