Read. Talk. Grow.

Mysteries and missing memories: Living with dementia

Episode Summary

In mystery novels, the detective often has special abilities: an exacting eye for detail, a talent for getting people talking, or a mind for puzzles. In Emily Critchley’s book “One Puzzling Afternoon,” the protagonist trying to solve the murder has dementia. Emily and Mayo Clinic dementia expert Dr. Dixie Woolston join us to explore how Emily’s realistic portrayal of the disease helps illustrate the humanity, capabilities and challenges of those with cognitive decline. This episode was made possible by the generous support of Ken Stevens.

Episode Notes

In mystery novels, the detective often has special abilities: an exacting eye for detail, a talent for getting people talking, or a mind for puzzles. In Emily Critchley’s book “One Puzzling Afternoon,” the protagonist trying to solve the murder has dementia. Emily and Mayo Clinic dementia expert Dr. Dixie Woolston join us to explore how Emily’s realistic portrayal of the disease helps illustrate the humanity, capabilities and challenges of those with cognitive decline.

This episode was made possible by the generous support of Ken Stevens.

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Episode Transcription

Dr. Denise Millstine:Welcome to the “Read. Talk. Grow” podcast, where we explore women's health topics through books. In the same way that books can transport us to a different time, place, or culture. “Read. Talk. Grow.” demonstrates how they can give us a new appreciation for health experiences. Books can provide understanding of health topics and provide a platform from which women's health and all health topics can be discussed. At “Read. Talk. Grow.,” we use books to learn about health conditions in the hopes that we can all lead happier, healthier lives. 

I'm your host, Dr. Denise Millstine. I'm an assistant professor of medicine at Mayo Clinic, where I practice women's health, internal medicine and integrative medicine. I am always reading and I love discussing books with my patients, my friends, my professional colleagues, and now with you.

Our book today is “One Puzzling Afternoon” by Emily Critchley. And the topic is dementia. In fact, our story provides a firsthand account. I'm so excited to introduce my two guests. 

Emily Critchley is a fiction writer living in the U.K. “One Puzzling Afternoon” is her latest novel and was an Indie Book of the Month, as well as a Must Read in “People” magazine.

She's also written another novel, a YA crossover novel, and a children's book. Emily has a first-class B.A. in Creative Writing from London Metropolitan University and an M.A. with Distinction in Creative Writing from Birkbeck, University of London. She now lives in Hertfordshire. Alongside writing, she works as a part-time employee, managing a busy secondary school library where she runs a popular creative writing club.

Emily, welcome to the show. 

Dr. Dixie Wilson has been at Mayo Clinic in Arizona for over five years and she's the Neuropsychology Division Chair. Her expertise is in assisting with brain mapping of patients undergoing neurosurgery for problems such as epilepsy or brain tumors. She supports the Mayo Clinic Concussion Program, and she also works with patients with neurodegenerative diseases such as dementia and cognitive concerns. She talks to people every day about ways they can maintain, improve, or manage their brain health. Her research interests include mood, sleep, cognition and long Covid. 

Dixie, welcome to the show. 

“One Puzzling Afternoon” is a novel with a protagonist we know from very early is unreliable. With two distinct timelines, in the 1950s and also in the modern day, these sometimes get muddled because our main character, Edie, is having flashbacks to a dear friend from her school days who disappeared mysteriously many years prior. And because Edie has dementia, she struggles with what's real, what's a recollection, what's going on currently. Once Edie is reminded of her dear friend, she becomes singularly focused on remembering the tragic events from their youth. However, her cognitive decline gets in the way both then and now. We're looking forward to talking about dementia with you today. 

Emily, what was the inspiration for this book? 

Emily Critchley: You know, originally, I just really wanted to write a novel that featured an older female character. I felt that they got sidelined sometimes in fiction. And I just, I really love books with older female characters and that was really what I set out to do initially. 

The opening lines just popped into my head one day. And not every book works like this. I always feel really lucky when something just comes out of the blue and you don't have to go searching for it. 

So the opening lines popped into my head, and those lines are when Edie goes to the post office and it's just a normal day but she sees standing outside the post office, Lucy Theddle, her best friend from childhood. Only Edie is 82 at this point and Lucy looks exactly the same as she did in 1951. 

I didn't actually know in the beginning chapters that Edie was in the early stages of dementia. I wrote those early chapters and I thought to myself, gosh, she's getting quite confused about this and it was like the book spoke to me and said, oh, she's got dementia. 

I sort of pushed it away initially, and I thought, oh, I don't know if I want to go there. That feels like a lot of responsibility. But it felt like I should be brave and that I should go there because somehow the character or the book was telling me that, that this was the situation, and I needed to go with it. So that was really how it how it all began.

Dr. Denise Millstine: It's so interesting to hear authors tell you how a book came to be. I would have guessed you started with the topic of dementia because you have captured it absolutely perfectly and how curious that she actually revealed herself as you spent time with her. 

 

Did you always know that Edie was going to be the main character?

 

Emily Critchley: I think I knew that from the very beginning, and I knew that I wanted it to be dual timeline. As soon as I had that opening paragraph with Lucy from 1951. I thought, oh, dual timeline, I'm going to have to go back to 1951. I felt that that's the way the story needed to be told. I needed to write alternate chapters going backwards and forwards between 2018 when Edie is 82 and then when she's 15 in 1951.

 

Dr. Denise Millstine: It's really brilliant. 

 

Dixie, I'm going to read you a quote from later in the book that I think really captures the topic of dementia and would love to hear your thoughts about it. So this is Edie reflecting on when she's seen a neuropsychologist, not called such in the book, but we believe it's a neuropsychologist, which is what you do. 

 

And here's how she says, “Dementia. That was what the woman had said that day. Dementia is what’s stealing my time, my memories. It's responsible for the fog, the static, the lost words.”

 

Sounds like a perfect description, right? 

 

Dr. Dixie Woolston: I really loved that description and characterization of Edie, because it absolutely captures it. I think what is so heartbreaking about dementia is watching someone or experiencing losing those parts of yourself, those memories, those things that make you who you are, essentially. I loved that that was captured so well. 

 

Emily, I thought you really did a great job describing that diagnosis and what those words can mean to people who hear them. You know, in some ways it's a relief, right, that there's something responsible for what you're feeling, what you're going through. But it's also, I think, just a period of sadness and mourning of the loss that you're experiencing every day. Dementia is one of those diagnoses that there isn't a cure for and people are not going to get better. Right? So it's knowing that you're on a path of decline, that you're going to continue to lose more of your memories of yourself. And I really think that Edie, as a character, just reflected those complexities so well.

 

Emily Critchley: Oh thank you Dixie. It is very sad.

 

I always was conscious while I was writing that I wanted to provide some moments of hope and conflict for the reader, that we know she's not going to get better, as you say, but we hope that perhaps she may find some coping mechanisms, some way of living the best life she can with the condition.

And obviously, you know, I'm writing to entertain the reader and hopefully to intrigue them by this mystery. And I hope that the readers will be rooting for Edie, you know, to recover the memories that she needs to solve this mystery. And part of Edie wanting to solve this mystery is it's not easy to remember what happened to her friend, and to discover why she disappeared.

But also, Edie really wants to prove to her family that if she's capable of solving this mystery, then perhaps she is still capable of doing some things independently that they believe she's no longer capable of. So it's about her autonomy and her having some agency, I think.

Dr. Dixie Woolston:I absolutely think that also was captured so well, just that struggle of losing independence, right? And wanting to maintain your independence as long as you can and maintain your validity in some ways as a functioning adult. That also is such a part of the disease, gradually losing things that you used to be an expert at, like Edie cooking chicken, right? 

 

Emily Critchley: Yeah. So, I mean, with the chicken, you know, Edie says, you know, this could have happened to anyone. And she's right, but we don't know. Was it the dementia? Was it not? 

 

And the chicken is a funny story in that it happened to somebody I know who didn't have dementia. And it was just one of those things. But of course, for Edie, you know, there are going to be more and more of those moments where the dementia does catch her out.

 

I hope I'm not giving away too many spoilers, but she cooks at a chicken dinner, and it's a recipe she's used since the 1970s and she messes it up. She burns the chicken and she spoils this dinner that's really important to her because it's with her family.

 

And again, coming back to this idea is she's so desperate to prove to her family that she is still herself and that you know, she can still have some independence. 

Thank you for picking out that moment in the book. It's one of my favorites.

Dr. Denise Millstine:I think it's an important point that we're not going to spoil the mystery. There is a mystery to this book and it's revealed at the end. But our conversation today won't solve that. You're going to have to read the book to figure out what happened to Lucy and what Edie knows about it.

 

But one thing you said, Dixie, that I want to highlight is that while dementia or cognitive decline is progressive, it's not necessarily linear. And we see that with Edie, we see that she has both good days and bad days. Both good moments, moments of clarity where she knows, for example, who her family is and moments where she says, getting muddled, where she's not quite sure, does she even know her granddaughter? Is that a typical course?

Dr. Dixie Woolston: I also think that most people with dementia do experience better days, do experience those days where they feel like their mind, all the circuits are firing, things are connecting. And that also, you know, highlights some of the frustration, right, for family members or people in their close circle who see them on these days when they're, 100% themselves, 100% functional.

 

And then when they have a day where those circuits are not working and the memories aren't clear and they're forgetting everything. You know it's frustrating for family to be like, well, yesterday, everything was great and now today, it's a whole different person in front of me. 

So yeah, I think that is definitely more typically the course is sort of these ups and downs and better days mixed with not-so-great days.

Dr. Denise Millstine: I think we also see Edie trying, like you said, Emily, to prove to her family that she's OK, that she has enough clarity and so it's even possible that you're interacting with somebody who has dementia, and you're not quite understanding how little is getting through or how little is connecting because they, too, are uncomfortable with why they don't quite know what's going on and might hide that by you know, being pleasant, making a joke, just kind of nodding politely and seeing, seeming like they're carrying on with the conversation when in fact it all is very confusing. 

 

Emily, you have some scenes where she's having conversations, and she'll get one piece of information and then it will all click in. 

 

There's one where she gets lost. Again, a very scary thing for people with dementia and families for who care about somebody with dementia. She literally wanders. She's very confused. She comes into a cafe and luckily one of the staff members recognizes her because of her granddaughter and once she says, oh, your granddaughter, Amy. Then it's like all the things fall into place and she knows who she is, she remembers who Amy is, she even remembers why she was out wandering and what she was after. 

 

Emily, that must have been very intentional, but it's just so well wrought. How did you know to get into that space or just Edie told you? 

 

Emily Critchley: It’s a bit of a mixture, I think, of imagination and research. So, I mean, I think that's the wonderful thing about fiction is that you have that interiority. It gives you permission to go inside somebody else's mind and there's a great there's a great freedom in that. 

 

But I also felt that writing about the subject of dementia, I did have some responsibility to get it as right as I could. And so I did my research. I read some wonderful memoirs, some nonfiction, some things online and some accounts from caregivers. And the more I read, the more I absorbed, and the easier it was to kind of write some of those scenes. 

 

And that scene when Edie’s in the café, I remember somebody in her memoir, I think it was Wendy Mitchell in “Somebody I Used to Know,” a lovely memoir. She describes it as just like a total blankness coming over her when she's walking around the same streets that she's walked around for years and years and years and all of a sudden she's completely disorientated and she doesn't quite know why she's there or what she's doing. And I want to try and capture some of that anxiety and, you know, I mean, how frightening that must be.

 

Dr. Dixie Woolston: Yeah, the anxiety, oh my goodness, it's a blank slate in front of me. I do think so many dementia patients experience that. Some of them experience more of, just kind of being oblivious to those fogs and those blank spots and they can kind of happily carry on, so to speak.

 

But some patients are much more like Edie, where it's so anxiety provoking to have those moments and not have things click back in. Fortunately for Edie, it did click back in as the cafe worker recognized her and was able to connect her to her granddaughter. But sometimes, even with those connections, it just doesn't click back into place.

Emily Critchley: It's so interesting to hear about how different people experience dementia differently and react to different situations, and how you said, you know, some people can kind of move through those blank spots, and for others it's much more frightening. 

 

And I think, you know, from what I've read about dementia, everybody's dementia is different. It's this particular person's dementia. And that's what we have to remember is that, you know, there's so many different experiences with this condition. 

 

Dr. Denise Millstine: Absolutely and everybody starts from a different place as well, which can be a challenge in addition.

 

Dixie, let's talk about a tough part of assisting people with dementia and that's driving. 

 

So there's a time in the book where Edie gets into her car and she doesn't quite know how to operate the car, which she's terrified by. But then her son Daniel tells her she can no longer drive. 

 

How do people decide when that's the news you have to give to somebody, since it's so tied to your independence and your ability, depending where you live, but often to your independence and your ability to do the things that have been your normal routine, 

 

Dr. Dixie Woolston: That driving in particular is one of the biggest challenges of dementia and aging in general is knowing when to give up the keys. And sometimes I think we expect too much of patients to be a little bit like Edie, right? Where she just kind of acquiesces to Daniel on that. 

 

Emily, I'd be curious to know about that scene, that little piece of your book. You know, what I see play out with families is sometimes, it's much more drama. It's much more a lot of anger, a lot of rebellion, even from, you know, the patients who are not happy about potentially giving up keys and some patients respond to understanding that driving poses a great risk to losing assets, hurting somebody. And some patients respond to that. Others do not.

Others I feel like we're doing more encouraging of, well, you know, you still want to drive, but your family's saying no. So we need you to do a road safety evaluation to kind of give you a chance to prove whether you're safe on the road or not. And sometimes that works with patients. 

But certainly I think driving really symbolizes just like you said, Denise, it's it symbolizes the independence, the being able to go run errands, get your hair done, pick up groceries, all of that becomes key parts of your day and losing that really represents losing a major aspect of being able to function in your daily life. 

Emily Critchley: That's so interesting. I think as well, you know, it depends. It would depend very much in the U.K. where you lived as to how much that would affect your independence. I imagine in Arizona, you need to drive. 

 

I mean, in the U.K., I have a great aunt in her ‘80s that lives in a very rural part of the U.K., and certainly that would be a huge loss of independence. And the time will come when she's unable to drive, I guess. But where I live, you would still be able to walk to the shops, to the hairdressers. It wouldn't be such a loss here or certainly in London. So I think, yeah, definitely. It depends where you live as to how much of a of a loss that would be. 

 

But it was a loss to Edie and there is some conflict in the book between her and her son Daniel. I think I was maybe slightly worried about having too many of these full-blown arguments, in case Daniel didn't come across as a sympathetic person. I mean, and quite difficult in that the book is written from Edie’s first-person perspective all the way through so I can never go into Daniel's head. 

 

We can never really know how he's struggling and what he's thinking. But I did worry that initially I actually sort of, you know, pared it back slightly from some of the conflict that they had because I worried that he was going to come across as so unsympathetic.

 

And having read more now about, you know, what it's like to be a caregiver and how it's, you know, it's not their fault they're becoming so frustrated. It's almost the opposite in that they're trying to cling onto that person and who they were and to admit that this is the neurological condition speaking is almost to admit that they are losing that person.

And I don't know, maybe I would have pushed those arguments a bit further. But yeah, poor Daniel, I didn't want him to come across as too unsympathetic. 

Dr. Denise Millstine: I don't think he comes across as unsympathetic at all. I think it's a very challenging situation and if he had been constantly less frustrated, I don't think that's really accurate. And you do that so well with Amy, who's Edie's granddaughter. They have a very close relationship and there's a scene in the book where Edie is insisting that she can pour the tea herself while Amy is trying to help her, and she accidentally harms Amy and Amy loses it. And that too, I think, is honest, because caregivers are amazing and typically compassionate and have just incredible patience.

And yet everybody has a point at which as Amy says it's just too much. Sometimes it's just too much. Which doesn't mean she doesn't love her grandmother or support what she's going through. But there are moments where it really is important as a caregiver to recognize this is the line, and I need to pull back now, reset and then coming into the next moment. 

Do you agree, Dixie? We have to have a lot of compassion for caregivers. 

Dr. Dixie Woolston: You know the book, “The 36-Hour Day” I think the title just captures the demands of caregivers so well because it is a 36-hour day. It's new challenges every hour, sometimes every moment as the person is struggling right in that minute. And I personally loved that you connected some teenagers, including Amy, to Edie in the book, and I love that idea of being able to connect, you know, our young people with their older people in their lives that are, failing a little bit cognitively. 

 

I think sometimes that's really hard for today's teenagers to be able to have the kind of empathy that Amy had throughout most of the book for her grandmother. And I love that she teamed up with her grandmother, and they kind of had their secret project of solving the mystery together. I loved those scenes, and I just think it also highlights how important it is to really weave together the multigenerational caregiving of a loved one with dementia.

 

Emily Critchley: Thank you. I really enjoyed writing the Edie and Amy relationship, and that's why it was quite upsetting for me, because it's quite late in the book, that scene when Edie does burn Amy accidentally. 

 

It was quite hard scene for me to write because they had been so close all the way through and Amy is sort of Edie’s champion and she says, okay, Nan, you know, we will do this, you know, and she believes her. And then it was a tough moment when Amy says it's too much and she just has to walk away. And I felt like Edie was losing her one solid ally in that moment. And it was a really tough scene for me to write. 

 

Dr. Denise Millstine: But they recover, they come back together and as with everybody, the next day is a new day. And I think Edie even tries to apologize to Amy because she, too, is impacted by how powerful the moment is and Amy says, oh, that was in the past. 

 

She's not carrying it and she makes that clear, which is also quite lovely, because we all recognize that Edie is having behaviors that are not necessarily logical or are based on information that she's confused about, whether it's current or coming up from the past.

 

Another important decision in dementia that, Emily, you actually do in the back story is deciding to have care in the home. So you give Edie this lovely companion in her home. Josie, talk about Josie and how you created her. 

 

Emily Critchley: Josie is there from the very beginning, actually maybe the second or third chapter we meet her. Edie introduces Josie as she says, you know, she's not my caregiver by the way, she's just somebody that comes in and does a little bit of washing up and, you know, she does the dishes, and she helps out. Of course we think, we would love to know the conversation that happened between Daniel and Josie when Daniel perhaps asked Josie to come in and help out.

 

Yeah. That was another, another really special relationship in the book and one that we actually know will come to an end because Daniel was very keen to move the family. He's had a new job offer in the south of England and he wants to move the family and this creates a bit of a ticking clock for Edie, really, because what's triggering her memories is that she's living in the town that she grew up in.

And, you know, she sees Lucy in the places where she saw her. And we've sort of got this slightly hybrid experience for Edie where she's living in the now. But also, those memories from the past are sort of seeping back in and blurring. And she worries that if she moves to a new place, these memories are not going to return because they won't be the triggers there.

So we know that Edie may possibly be leaving her house behind the town behind, and also, of course, Josie.

Dr. Dixie Woolston: I also liked in the book how you wrote the scene with Josie where Edie misplaces a photo, but she's convinced that Josie stole it. And we definitely see that happening a lot in dementia, where any item can be lost, but because there's no memory of where it was misplaced, patients often accuse family members, caregivers of being in the house at night, stealing their items, moving things around. And I thought Josie handled that accusation so well with, you know, let's just keep looking. I'm going to help you find it. 

 

Sometimes I don't see quite that level of being able to, turn it positively when people are accused of things they didn't do, they have a hard time remembering that their loved one, it's the dementia talking. It's not that their mother really thinks they're stealing or coming in the house at night moving around things. But I thought that was another good moment captured in the book of what it's like to live with someone with dementia.

 

Emily Critchley: Thank you.

 

Dr. Denise Millstine: Well and how you respond to that might be where your energy is at when that occurs. Right. It's coming in for a few hours a day and then you go on and are not responsible for this person. But if you're living that 36-hour day and at the end of your total energy, you might respond in a way like we do with our kids when they can't find their shoes or something similar to that.

 

Speaking of moving, there's another character in the book who lives in a senior community that I think is just optimally pictured. He is thriving in his late 80s, getting out of the pool, getting ready to go to chess club, or some social experience. And I think it is a tough choice for many people to leave their independent home and of course Edie is moving towards moving with her family. But for those who aren't moving with their family, you've also created this really lovely possibility that there are senior living communities where people can thrive. Can you talk about creating that?

 

Emily Critchley:  Yes, I really enjoyed that scene, actually. He was a great character. So he's a now retired police officer. So he was involved in Lucy's disappearance when he was very young, new on the job and Edie and Amy go and seek him out in his retirement village. And he's really happy that and he's really positive about it. 

 

And there's a little bit of humor in that scene, you know, he asks Edie if she's if she's ever tried water polo, which he gets to do you know, it's one of his activities. And yet she quite abruptly says, no, she hates anything to do with swimming or water. It reminds her of swimming lessons. She had school outside in the cold and can imagine what that must have been like in in the 50s.

I think there are some moments of, of sort of warmth and humor in the book that sit alongside some of the, the darker themes. And by darker things, I'm not necessarily talking about dementia, but I mean, when we go back to the 50s, we learned that Lucy's having this very unhealthy relationship, to say the very least, with somebody who absolutely should not be involved with her and that relationship. 

I think it does. Yeah, it does go to some, some quite bleak places. And is always so important to me when writing fiction to have that kind of contrast of the dark and the light and that for me was quite a fun scene to write.

Dr. Denise Millstine: Dixie, we're lucky enough to live in Arizona, where we have many of these communities. But the conversation to encourage somebody to consider leaving their home, particularly if they've been there for a long time, or also because they're comfortable with the space and the arrangement and getting around. I'm sure those conversations are often difficult, much in the same way as the driving conversation.

 

Dr. Dixie Woolston: I always try early on with patients even before they're experiencing cognitive impairment. Just as they're aging, you know, to sort of develop a plan for the worst-case scenario. Like, you know, I know you want to stay at home. And if that's the case and you medically need it, would you want to stay at home and have caregivers around the clock, or would you want to pick out a care center? You know, if that were necessary. 

 

And I really encourage patients to kind of think through different scenarios and try to make their own decisions, because even if, you know, they develop dementia later in life, I really try to encourage families to follow the wishes of their loved one to the extent possible. But if we don't know what those wishes were when they were healthy, it is very difficult for family members to carry that out. 

 

So kind of having that worst-case scenario plan or while you're still healthy, explore some of those options. You know, there's all kinds of places with all levels of support. And it's just great for people to have their wishes there to give their family members some guidelines of what they would like.

 

Certainly, you know, moving from your independent home to assisted living or a memory care center, I think those are incredibly difficult conversations. And, you know, sometimes it's unfortunate, but those moves have to take place even if the person is not on board, just for their medical safety. So making those transitions happen when you're kind of getting pushback from your loved one, I think those are so hard to do.

 

And I will say, you know, here in Arizona, we're so lucky that we have a fantastic Alzheimer's Association that offers for free some of these fantastic classes for caregivers, like how to have the conversation about driving, how to have a conversation about moving, how to even just have an everyday conversation with somebody with dementia. And so, we're lucky to have those kinds of resources available. 

 

I've lived other places where it wasn't that deep in terms of the resources. So I just hope people if they've got someone with dementia, they're caring for, utilize the resources because they, they really can be helpful.

 

Dr. Denise Millstine: Thank you so much for that reminder. It's really important to recognize that there are lots of ways to learn about conditions and often when we're looking for specific instructions, we can find books that will really map out what is dementia, what can a family expect. It's really important that people know those resources exist and we'll put many of them in the show notes for people to check into.

 

And I also love this idea that we can be trying to solve a mystery. And exploring these concepts as well. 

 

It's really amazing to me that we are toward the end of the episode and we didn't spoil the mystery because that really is the main line of the book. “One Puzzling Afternoon” refers to the 1950s when Lucy went missing and what happened to Lucy Theddle, which up until this timeline in 2018, nobody had been able to put together and Edie holds the key. 

 

Our listeners are going to have to read the book to figure out that most important timeline. And let me tell you, it is well worth it. 

 

I want to thank you both for being on “Read. Talk. Grow.” For coming and talking about “One Puzzling Afternoon” and for exploring what it is to be in the head in the life of somebody who is living through dementia. Thank you.

 

Dr. Denise Millstine: Thank you for joining us to talk books and health today on “Read. Talk. Grow.” To continue the conversation and send comments, visit the show notes or email us at readtalkgrow@mayo.edu. 

 

“Read. Talk. Grow.” is a production of Mayo Clinic Women’s Health. Our producer is Lisa Speckhard-Pasque and our recording engineer is Rick Andresen. 

 

The podcast is for informational purposes only and is not designed to replace a physician's medical assessment and judgment. Information presented is not intended as medical advice. Please contact a health care professional for medical assistance with specific questions pertaining to your own health, if needed. Keep reading everyone.