Revisiting 'The Mother Who Changed: A Story of Dementia'

hi everybody it's Sabrina I'm here. because today we're doing something. special we're revisiting a show from. earlier this year from January the story. at the center of this episode which was. first a magazine feature by reporter. Katie Englehart it just won a pullis. prize for feature writing this past week. our team here at the daily including. producers Luke Vander plug Clare tennis. getter Diana win and Deputy editor. Michael benois worked with Katie to tell.

that story in audio both versions we. think shed powerful human light on a. disease that affects so many people. dementia so we wanted to resurface it. for all of you hope you'll give it a. listen here's the. show 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 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 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 Margo who's. sitting before us and who is by all. accounts. [Music]. happy in other words who is the. authentic. [Music]. Marco from The New York Times I'm. Michael babbaro this is 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 engleheart with one. family's experience.

[Music]. Katy 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've been writing about the.

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. 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 ing.

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 gu guys. and bad guys this was a lot more.

complicated we can all hear each other. yeah 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 nurelias and that really. started two years of conversation with. them sure starting someplace. Works Chris and Julia are separated by a. few years but they act almost like twins.

were like that's. 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 nurelias. family grew up in Dennis in 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 land owner but we spent. most of our time talking about their.

mother Diane. nelas my mom was. really the center of our family she 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 memor competent and you know a big. presence in the area she served on the.

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 a. 1950s wife at home with the children. husband working um and she was by her. daughter's admission quite happy in that. role it was all 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 Dian 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 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 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 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 had since retired I mean it was. a 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 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. property 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 certainly 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 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 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 on these drives they' drive around. the state or to different states they'. go to antique shows or horse shows or. quilt.

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 they're joyful joyous mother was.

growing mom wasn't sour 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 her. heart they weren't sure denel 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. 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 Vicky's.

house Vicky 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 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 dian's. bank statement. 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 rested but. it would get him out of the house that's. right so as a lawyer sort of working. away on this paperwork Chris and Julie. got 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 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 cuz I didn't know how he was. going to react I was terrified. 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 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 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 them. most on that initial day was that none. of this seemed to register for Diana 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 daughter. 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 ter 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 a 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 and that's I didn't I. never doled anything from your well. she's using. but while 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 when. we did this you asked me you said Mom. you know I would do 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 i' 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 has nothing to do with. Denzel he's got his own money I got my. own money uh 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 of it for me. because back before because I didn't. have a clue and my mind wasn't working. very well anyway um probably better than. it 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 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 Bas on what you to 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 has 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. GRE 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 ien 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 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. Diana's 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. decisionmaking 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 Dennison 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 Mana 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 you 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 denal to. know that from my perspective there are. opportunity 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 them. and Nana it's up to. Nana and she has chosen to write them. off I have chosen to write them 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's. causing distress which happens to be. your. family I'm sorry she says quite clearly. there's not a way to move on. [Music].

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 I'm. sorry I want you to know I love you. goodbye by. [Music].

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 Kati 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 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 and she says what are you up to. today and I said you know it's a nice me.

and 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 says 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. M it always tickled me. because her husband was an attorney and. and every trip they ever went on they. had to be certain such of 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 or do 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 theous. 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 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 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 denzil'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. Dian 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 and I heard Chris tell. Diane Denzel did something illegal and. you're never going to see him again in. Denzel's version of events he doesn't. resist at. 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 taken aback 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 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 our.

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 rubbing 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 that 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 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 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 I. could have went nuts I mean. uh 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 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 7:00 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 set out in the. porch. swing 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: 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 that 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 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 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 case 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 no 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 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'. she like to be her guardian she said. Mara 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 a. 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 and I get realiz 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 no 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 shaking. and and that and. so I actually helped her put her makeup. on I probably didn't do a real good job. but but I uh I helped her put her makeup. on every morning. and it.

was 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. co yeah when the co started then you. know I couldn't get her out of there. anymore Diane yeah some days seemed to. understand what was going on but other.

times seemed to know nothing of the. pandemic and it got to her herel 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 pH. 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 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. continued 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 and just try desperately to get word. of Diane and none of that worked until. this is Aon can I help you hi Erin can I. speak to Diane n. 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. 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 move to. a different better. facility don't know I don't know where. 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 I can you. know is that. okay yes absolutely absolutely have them.

coming to 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 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 ask Diana if she's. okay she tells the nurse they hate me. of 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 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'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 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 and 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 but she never calls him by name. I'm 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 we'll be right. back 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. Densel 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. we is 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 mhm. 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 mhm 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 as 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 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 yeah. [Music]. 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 well Katie thank you very much we. appreciate it thank you for having me. [Music].

today's episode was produced by Luke. Vander PLO with help from Claire tennis. getter and Diana win it was edited by. Michael benois contains original music. by Dan Powell Marian Lozano Pat mccusker.

and Diane Wong and was engineered by. Alyssa Moxley our theme music is by Jim. brunberg and Ben lanfer of. [Music]. wonderly that's it for the daily I'm. myor see you tomorrow.

[Music].