AUTHOR CINDY WEINSTEIN: "Finding the Right Words: A Story of Literature, Grief, and the Brain"

Hosts, Susie and Don are joined by Professor/Author/Caregiver, Cindy Weinstein, Ph.D., who co-authored a book with neurologist, Dr. Bruce Miller titled, Finding the Right Words: A Story of Literature, Grief, and the Brain. Dr. Weinstein talks about the guilt and grief she dealt with after her father was diagnosed with Early-Onset Alzheimer's Disease. She describes the challenges of being away from him while in graduate school, and the different strategies - including literature -  that she used to stay connected and to manage her sadness.

The narratives of the authors alternate in the book. Cindy tells the story of her father's illness, and how 30 years ago scant information was available to families about this vicious disease. She also tells the story of his life, and along the way, weaves in observations about literature and the insights she has gained from her favorite books. Bruce takes over certain sections of the text offering in-depth explanations of the science behind neurological topics including the brain, Alzheimer's and language.

Cindy was born and raised in Verona, New Jersey. She received her B.A. in English and American Literature from Brandeis University, after which she went to UC Berkeley for her Ph.D. in English. She is currently the Eli and Edythe Broad Professor of English and has been at the California Institute of Technology since 1989, during which time she has published three monographs on American literature, edited several volumes, and taught classes on Herman Melville, Edgar Allan Poe, Women’s Fiction, and African-American literature. She has had several administrative roles at Caltech, including Vice Provost and Chief Diversity Officer. In 2018-19, she was an Atlantic Fellow in the Global Brain Health Institute based at UCSF and Trinity College Dublin, where she studied neurology with an interdisciplinary group of scientists, artists, social scientists, and physicians. During this time, she worked with Dr. Bruce Miller on Finding the Right Words.

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Transcript

Cindy Weinstein: 0:00

When the world has gotcha down, and

Don Priess: 0:03

Alzheimer's sucks. It's an equal opportunity disease that chips away at everything we hold dear. And to date, there's no cure. So until there is we continue to fight with the most powerful tool in our arsenal. Love. This is Love Conquers Alz is a real and really positive podcast that takes a deep dive into everything. Alzheimer's, The Good, the Bad, and everything in between. And now, here are your hosts Susie Singer Carter, and me, Don Priess.

Susie Singer Carter: 0:36

Hi, I'm Susie Singer Carter.

Don Priess: 0:39

And I'm Don Priess and this is Love Conquers Alzs. Hello, Susan.

Susie Singer Carter: 0:43

Hi, Donald.

Don Priess: 0:45

How are ya?

Susie Singer Carter: 0:47

Flustered this morning? Took me 10 takes to say good morning. I don't know wha's going on.

Don Priess: 0:53

Well, just wait till I have to read our guest's introduction. It's gonna be oh my goodness. It's gonna be crazy.

Susie Singer Carter: 1:00

There's words in there. There's a lot of words and there's words that we don't know. They're hard words. Because you know why?

Don Priess: 1:07

Why?

Susie Singer Carter: 1:08

She's smart. Super, very smart. Yeah. Wait. She's so smart. You guys, get ready. She's smart, she's Lovely.

Don Priess: 1:18

so what's happening?

Susie Singer Carter: 1:19

Ummm, I had my flu shot yesterday. So any, any kinds of mistakes or faux pas or, you know, bad, paler? I'm blaming on the flu shot because I have an excuse.

Don Priess: 1:32

Right. You've had a crazy week, haven't you?

Susie Singer Carter: 1:35

Yes, I have my daughter made a new human, a human being, a little human name Georgia. Lovey. And Lovey was my mom's nickname growing up and all through her adulthood. And my my daughter honored her with that name. So we have a little a little Georgie, in our family and she looks exactly like my daughter when she was born. And she weighed this exact same weight and the end she measured the exact same length. And may I add that she is olive tone with brown hair. Just like my mom, I just saying.

Don Priess: 2:13

You are just saying.

Susie Singer Carter: 2:14

I'm just saying so yeah, it has been a year of losses and gains a nd and such as life. But, yeah, here we are,

Don Priess: 2:24

I would get I would get very trite and say the circle of life but I will not do that.

Susie Singer Carter: 2:31

(Sings Lion KIng) Where's my Yorkie? he's always good for that.

Don Priess: 2:36

I don't think we have the budget for the songs.

Susie Singer Carter: 2:39

So, Don, I've never been in a community like this that's so so enriching. I feel like I'm learning all the time. And I'm I'm feeling heard all the time. It just makes you feel good. And this this guest in particular, her perspective on this disease, Alzheimer's and dementia and the journey and the loss is so mirror to what the way I feel it's so validating to hear somebody else have that perspective. Who's already gone through what I'm going through right now. I can't wait to share that with everybody. So why don't you introduce our very amazing guest?

Don Priess: 3:19

Absolutely. Our amazing guest today is Professor Cindy Weinstein, and she is currently the Ely and Edith Broad, professor of English at the California Institute of Technology. Since 1989. She has had several administrative roles at Caltech, including Vice Provost and chief diversity officer in 2018 and 19. She was an Atlantic fellow in the global brain health institute based at UCSF and Trinity College Dublin, where she studied neurology with an interdisciplinary group of scientists, artists, social scientists, and physicians. She has published three monographs on American literature, taught classes on Herman Melville, Edgar Allan Poe, women's fiction and African American literature. But most recently, she has shared her personal stories and professional expertise, and a humorous yet poignant memoir, Finding the Right Words, a reflection upon her father's experience with early onset Alzheimer's, in conversation with a distinguished neurologist, Dr. Bruce Miller. It's a truly intimate and illuminating work that ventures to explain how this disease attacks the brain. And we are so looking forward to learning more, so let us not wait any longer. Please. Welcome and say hello to Professor Cindy Weinstein. Hello, Cindy.

Susie Singer Carter: 4:36

Hi, Cindy. It's so great to have you here. What an honor to have you it's what a brilliant mind and what a big heart you have.

Cindy Weinstein: 4:45

Thank you. I feel very much the same way. I your podcast is extraordinary. The way it combines information and emotion and humor. It's just a beautiful thing you're giving

Susie Singer Carter: 4:59

Awww, thank you. Well, thank you for to the community. this, too. This great book that I'm, I'm still I'm going through it bit by bit. First of all, it's delightful. And second of all, there's so much good information in it. And being able to use the literature as metaphor. And using that as a tool, we forget how powerful metaphors are, I use it as a filmmaker all the time. I really highly recommend this book, you guys, I really do finding the right words, it's really good. And if you've been through this journey, there's so much in it that will will resonate with you, and, and also enlighten you as to what you and your person were going through at each stage. It's brilliant. It's a brilliant, it's a brilliant concept. So yes, yes. So I want to dive in so bad. There's so much I want to say I've earmarked some things from your book that I want to talk about. But why don't you share your story of your father who had early onset Alzheimer's and give us just a brief background on on that because I everyone's everyone's origin story is a little different.

Cindy Weinstein: 6:09

Sure. My father was diagnosed with Alzheimer's in the 80s. I was in graduate school at Berkeley from 1982 to 89. And a few years in, I was realizing that something was wrong with my dad. In the book, the first chapter is diagnosis. And I uncovered the fact that I sort of knew something was wrong, Before we officially got the diagnosis. And I noticed in particular, a word finding difficulty and the conversations that I used to have with my dad, I was very, very close to him. They became monosyllabic, my dad would just give my mom the phone, they were in Florida at the time. And the communication was not what it used to be. And I also noticed that in those days, when you wrote letters to people or type letters, my dad's typing was full of typos. And his handwriting was even worse than it used to be writing never a very good handwriting to begin with. And my parents would visit me in Berkeley. And the origin story for the book, really was a trip to the supermarket in Berkeley. And my father wanted something in the salad for dinner, and didn't know the word for it. And it turned out what he wanted was Krypton. And I describe in a chapter on word finding, just sort of the horror of seeing the disease expressed in that way. And the synchronicity of my father losing words while I was becoming an English professor. And gaining expertise in burrows was something I had been chewing on for decades, and knew that I needed to come to terms with it in some way. And that was the first part of the book that I wrote the story about, trying to help my dad get to a word.

Susie Singer Carter: 8:40

It's interesting, because we all lose words, right? I do it all the time. And of course, with my mom having Alzheimer's, I panic each and every time. And so, you know, it's it's a really, is there anything that you could enlighten anybody listening? That might be also ya know, searching for a word? And I know sometimes it comes from being tired or overworked or not sleeping enough, and, and we lose words, Don, and I do it all the time. When is it a problem? When should we worry about it?

Cindy Weinstein: 9:12

I studied neurology for a year. And as I told my friends, that can be a dangerous thing. So to answer your question, I really, I really have difficulty answering that question. I guess. There are different problems people have with words. And I remember Bruce explaining to me there's the version where the word is just gone. There's the version where you have the dictionary in your brain, but you can't get to the right page. There's a version where, like, biologically you can't see the word that there is something happening. aphasia. Exactly right. So I'm going to answer a slightly different question andAnd if that's okay,

Susie Singer Carter: 10:01

Oh, sure, sure. Yeah. And I just can I just say that but when an object and just say that, I hear what you're saying, and and I noticed that. And I think that even with my mom at the end stage, when she was had lost her ability to speak, other than she said, I love you to me, loud and clear. I saw her searching for the words, I saw her look to the right. Try to try to think of something and then come back to me and it was gone. And I know it was gone. Because I'd say to her, I see you, I see you looking for those words. You got words for me, don't you and she would just squeeze my hand I go, you know, so I knew that. It's almost like the second thing that you had mentioned, you know, like, the word is there. She just can't, she can't connect it. And when she said, I love you, I said to her. Holy shit. That was a huge thing you just did for her to pull those words together, and actually get them out of her mouth was a gift. So I do I hear you loud and clear.

Cindy Weinstein: 11:07

I'm so glad we got that. And I would just say that. One of the ironies of reading the book and looking back on it is me realizing that words are important, and I love them, but they're not all they're cracked up to be. Um, so even though my father couldn't say I love you, I knew it. It didn't matter. And that's been an interesting thing to get to, after writing this book, which is, you know, a letter to how much I love my dad, how much I love literature, how much I love language, to realize the limitations of that. But what I was gonna say as I read this book by Lisa Genova,

Susie Singer Carter: 11:53

yes, I know, Lisa, yeah,

Cindy Weinstein: 11:55

Yeah. And she talks about that anxiety people have when they can't find a word, and oh, my God, what's happening to me. And what I really liked about one of the chapters she wrote about was like, it's okay to use technology. Like, sometimes instead of like going into a tailspin, especially if you have a relative with dementia in the family. Just like, go on Google. And just look it up.

Susie Singer Carter: 12:25

I do it all the time. I love my Thesaurus. Thank you to Thesaurus! thank you so much. Love you love it. It's the best. Yeah, no, you're absolutely right. You're absolutely right.

Cindy Weinstein: 12:36

Because you're still tests that you might fail, because that's just gonna, that doesn't help anybody.

Susie Singer Carter: 12:43

It doesn't help anybody. You're so right. That's beautiful. Yeah. So think about all the stress you're under, think about

Don Priess: 12:46

Just because you're you've lost the you know, some the cortisol that's running through your coursing through of that skill. You know, I think you have to look at other behaviors before you start saying, Oh, my gosh, I have your body, Alzheimer's, it's not just losing words. There's other, Sometimes just thinking about more than one thing at a time. obviously other issues that are going on. And I think you have You know, it's like when you send it like sometimes when you to combine that before you start saying, Oh, my God, I have Alzheimer's, right? Because I can't think of a word. sit in a room and go, Why am I here? Why was I going over here? It's because you're thinking about something else? Right? So yeah, we shouldn't panic immediately when those things start happening, you have to look at the big picture and some of the other behavior.

Susie Singer Carter: 13:32

Okay,"Steve", I'm just kidding

Cindy Weinstein: 13:38

It also could be you're tired, and you're not getting enough sleep, and you need a CPAP. Or you're not hearing as well as you need to. And so think about getting hearing aids. And now with the new law that was passed that you can get hearing aids over the counter. Yes. Huge.

Susie Singer Carter: 13:57

Amazing. Yeah. Can I say something to you, Cindy, just in terms of like, your dad, you know, he said, I love you all the time. You don't really have to, and I say this to people and I want to just say it to us that you only have to look at a baby to know when a baby loves you without words. Right? Well before they can talk well before they can they know any word and you know whether they love you or whether they're afraid of you or whether they're nervous, or you can you can read so much without words. You can do that with pets. You know, we don't have words with pets, but we can look at them in the eye. And they know and we know what they know. So, right and so there's so much to be said about you know, just nonverbal communication is powerful. Words are beautiful words are great there but we don't need them to communicate.

Don Priess: 14:55

People who who speak totally different languages can communicate with each other. You know, That's just the words are you know, we are we have more going on up here that that allows us to communicate without without actually hearing them. So yeah, I think words are overrated is is right on.

Susie Singer Carter: 15:14

I feel like this is such an obvious question. But what led you to writing Finding the Right Words?

Cindy Weinstein: 15:20

I wanted to write the story of my father, and how much I loved this person. And it took me a really long time to figure out how I was going to tell that story. There are, as you know, many memoirs about dementia about Alzheimer's. And I wanted the book I wrote, not only to tell the story of my grief and the story of my father's illness, and in the last chapter, the story, the funny stories, everything I just adored about my dad, and we can talk about how I kind of recovered those memories. But I also wanted to use the book as a way to help readers. And I think because I've been at Caltech for so long, I wanted the voice of science of a doctor, I wanted to give the readers information about dementia in a way that was reader friendly. And I wanted images in the book, so that when a family goes to the primary care physician or the neurologist, it wouldn't be the first time they would see a pet, or they would hear the word periatal lobe, or they would hear the word primary progressive aphasia. I almost wanted to arm the reader with language, because it's so scary, you know, usually going into the doctor's office, and much of the power is on one side. Although I have some ideas about how to level that out a little bit. And so it took me a while to find Bruce I initially wanted, I thought maybe I could work with someone at Caltech, we don't really do very much work on dementia. We're starting to do research on Parkinson's, but less on Alzheimer's, Frontotemporal dementia, Lewy body. And so I thought I was going to work with so many UCLA, and she then developed a writing block. So that didn't work. And then I found someone at Santa Barbara. And he really liked the idea. But the scientists are constantly traveling every time I had a conversation with him, it was an it was in an airport because it was off to you know, some country

Susie Singer Carter: 18:04

That doesn;t sound too different. It's not too different from our industry.

Cindy Weinstein: 18:07

There ya go, yeah! And then that person sent me to Bruce Miller, and I sent an email to Bruce, I told him my idea, and met with him, we've really hit it off. And he said to me the magic words, do you want to learn some science? And I said, Yes, I do. Because I had worked so long, Susie, with what you were saying sort of literature's a metaphor for grief and sadness. But I knew I needed another language to tell the story of my father's illness, and also to make sense of my relation to it. And I had a feeling that if I learned some neurology and worked with a researcher, I would be able to do what I needed to do to tell the story.

Susie Singer Carter: 18:58

It's so smart, and it's so beautiful. And it's so novel, bVernuecause I haven't seen anything else like this. So that, you know, you have the personal anecdote, which is what is what grabs us. And then you've got this wonderful avuncular kind of guy who, who's like, yeah, Want to learn some science, it's like, you know,

Don Priess: 19:20

Bill Nye?

Susie Singer Carter: 19:20

Bill Nye, it's like that you've got this guy who's like, loves it so much, that he's just, you know, bringing you into his world. Let me tell you why that's happening. And that's such a great thing, because it's it, you know, it makes it accessible for for those of us that aren't academic, and it's just perfect. I just

Don Priess: 19:38

And it demystifies Yeah, demystifies this thing that you're like, oh, it's the brain how....

Susie Singer Carter: 19:43

This is what's happening.

Don Priess: 19:44

How do we understand that Yeah. So so that's, it's really a beautiful structure.

Susie Singer Carter: 19:51

There's so much about like the brain and also just about science in general. You know, that I, I always say that there's, you know, there's the science and there's the data. And then there's the individual. And there's something magical about the individual that can trump the data sometimes. And that's why we have to be we need to be informed on in all areas. So that we can say, okay, there's the data, but who's this person we're dealing with? Our, you know, what is their strengths? And what is their, you know, cognitive reserve that that's going to steer them in a different direction than say that person. Right? Right. And I, I love that because it doesn't throw us all into the same box,

Cindy Weinstein: 20:38

Right. A couple of things I just to respond to that I wanted to give information via Bruce, to educate people about the science and also about the grief process and what it might look like. The thing is that a lot of people can't get to UCSF. And there are people in rural communities, there are underrepresented populations that have difficulty getting into these clinical trials. And there are a lot of researchers who were working very hard on diversity, equity and inclusion with respect to these trials. And I wanted to be able to give people access to Bruce, through this book and to his expertise. And the program that I was in is called the global brain health initiative is devoted in large part to access around the world. And so the program that I was in, people were from Botswana, Jamaica, through Brazil, it was extraordinary.

Susie Singer Carter: 21:49

Wow, it makes me feel so happy that there's that much interest all over. Well, there's so many people that at least in my circle, that don't want to look at this, don't care to look at it. And you know, there's a lot of lalalala going on. I'm guilty of it, too, for a long time.

Don Priess: 22:07

You don't want to face you know, it's sometimes it's easier to just say, you know, I'll I'll close my eyes. And if I don't see it, it's not there.

Susie Singer Carter: 22:13

It's not there.

Don Priess: 22:14

and it's there.

Cindy Weinstein: 22:16

Well, the film you did with Valerie Harper, is just beautiful. And just really, really gorgeous.

Susie Singer Carter: 22:26

Oh, thank you.

Cindy Weinstein: 22:27

Such a gift. Such a gift.

Susie Singer Carter: 22:29

Thank you. Yes, yeah, I say that. Yes. Because I say Valerie, Valerie, that was her last performance. And she she just dove in and embodied my mom. It's like she put her on. She went, gotcha, Norma, I'm in there. And just embodied her. And, you know, she, her her, her connection with that story was just extraordinary. Her connection?

Cindy Weinstein: 22:56

Yeah, you could tel. Yeah, what I loved also about the movie, it really confirmed, something that Bruce talks about with dementia. And that is when certain parts of the brain aren't working, as well as they might, other parts light up. And so he has a theory, and I think has data to support it, that the empathy circuitry in Alzheimer's gets really activated even more in the absence of language and other parts of the disease. And so the moment in the film, where your mom played by Valerie is talking to the trans person. And that just blew my mind that was just just magnificent. Just to see the ability, her ability to, even in her illness to make someone feel so good and so whole and so loved was just spot on.

Susie Singer Carter: 24:10

She tapped into her mother, her motherly instinct.

Cindy Weinstein: 24:13

I love the scene. I just have to say, when she's worried that the caregiver has stolen something, she's looking in a cabinet. Yes. My, we had a lot of Lladro in our house in New Jersey. That was, yeah, I think maybe it's a certain time period. Yeah. That resonated just that detail was so perfect.

Susie Singer Carter: 24:43

Good. I'm so glad.

Don Priess: 24:45

It's interesting, because we found you know, as when we did the movie, you know, we had just, we were the only ones who had seen it. We were like, is anyone going to relate to any of this? It's so personal. And you realize and I think you probably realize this with your book. There's so much shared experience, even though it's a completely unique moment, the experience itself is a shared experience. And that's why it's so interesting when you when you hear it from Bruce's reasoning why that is, you know, that's, that's so there's, I'd love for Bruce to just watch our film and explain it all to us, it would be great.

Susie Singer Carter: 25:21

We should do that that would be so fun

Don Priess: 25:24

to go moment by moment

Susie Singer Carter: 25:27

And have him explain what's going on. That would be gorgeous,

Don Priess: 25:31

which is what your book does.

Cindy Weinstein: 25:33

I will go and report back.

Susie Singer Carter: 25:34

Yeah, we should all the four of us should get together that would be so great. You know, it would be great. But you know, so we talked about the structure of your book, which I love your structure of it. I love the stories that that touch our hearts that make us laugh that make us cry, you know, and your love for your father is so palpable. But I need to ask why Moby Dick was such a huge part of this narrative. And why is that, in particular speak to you.

Cindy Weinstein: 26:04

I'm teaching Moby Dick right now, actually,

Susie Singer Carter: 26:07

Are you?

Cindy Weinstein: 26:08

Yeah, teaching a class on Melville, which is, which is wonderful. I read Moby Dick for the first time when I was 16. And I was the kind of student like if the teacher said, of this is like the hardest book, like, don't, don't work on this, because you'll never understand it. Like, that's the thing that I wanted to figure out. So I read it in high school for the first time. And then I read it again in college twice. And I think part of it, there's a lot going into it. But one of the things has to do with the people, I was reading it with my teachers, I loved my teachers, and they pushed me to understand this really complicated book. And then when my dad got sick, they weighed in on how I might want to think about pursuing my career or putting my career on hold. Still, the novel itself. is, is important to me, both because I love the book, and I'll talk about that in a minute, but also in relation to where I was at particular times in my life when I was reading it. So there's that. And what I also discovered is with each rereading, I would get something new out of the book. My favorite thing to do with my students is just to take a paragraph or two and walk them through how Melvil gets from point A to point B, how he enacts Ralph Waldo Emerson's transcendental ideas in the novel, just, the language is just gorgeous. So I love talking to my students about that. It's a really funny book. And I love bringing out the humor with my students. Because I think there's a there's a way that people are sort of frightened of the book. And it's really fun to work with students to get them to sort of take the novel off of its pedestal. But the main thing is the story of Ishmael and Ahab, and I can kind of over the years, I was able to take my emotional temperature, based on which character I was identifying with. And Ishmael is really funny, and very process oriented. And he doesn't really care if he gets to a conclusion or not, the fun of it for him, is just trying to figure it out and writing about it, whereas Ahab thinks he's got it all figured out. And he's full of anger and fear, and authority. And when I've identified with Ahab's pain, too much, and this was really the case when my father was first diagnosed, like I understood Ahab in a way that I wish I had never been able to understand, like wanting to get out in the world and destroy something that represented the thing that was causing me so much pain. Wow. And when I was feeling better I was able to embrace ish males position. And so it's just been a kind of guideposts for me throughout my life and one of my favorite chapters in the novel is Ishmael describes the ability of the whale, its eyes are placed on either side of the head, and that the whale can hold two completely different pictures in its mind at one time. And I think that that is something I have aspired to, as I've come to terms with my father's illness, the ability to see that terrible things that really sad things are really painful things which I confronted in finding the right words. But then also, the wonderful things together.

Susie Singer Carter: 30:57

Yes, the gifts that when what Bruce said, and I stayed in my rudimentary ways that you know, when, when some as some skills leave, others are replaced by other things that are that are stronger and more and more potent, and they are the gifts, right? They are the gifts like you like the empathy that that gets pumped. You know, it's interesting, because I have shied away from classics, because of just what you said I was, so want to take your class now. I do. I mean, I just, I just started reading Crime and Punishment for the first time because it scared the hell out of me. And I thought, I need to read something that's, you know, scary. And because I need to test myself and challenging myself, and I'm not sure I like it. I'm halfway through, I'm not sure it was the best first choice of that kind of literature, but I'm still trying to wrap my head around the characters, and they're, they're not very likable. And I'm trying to find the what know that take away?

Don Priess: 32:14

Yeah, you know, I was just gonna say that, you know, you just said that you've that literature to help you understand your, your father's suffering, your own pain. But you've also said that it allows you to deny what was happening, how does that work?

Cindy Weinstein: 32:27

It was complicated. I think that. And this is such an English professor thing to say, like it did both. It allowed me to pour my energy into understanding other people's pain, because literature is often about grief and about pain. And so I would be reading, I don't know, Lolita, an American tragedy by Dreiser. And just the act of moving my attention away from my dad, and what was happening with him to something else was sort of a way for me to kind of temporarily deny or put to the side what was going on with my father. At the same time, as the books, I was most attracted to Moby Dick being probably number one. There was like a, it was like the door was ajar in the novel, to let me in just very small doses. Think about what was happening with my dad. So it was a funny combination of, I don't need to think about what's happening, I can roll my, my brain into this other endeavor, at the same time, as it was a window into my own grief.

Don Priess: 34:11

Don't you think that's healthy? I think that's, I mean, you say it, because the way it's when you say you know that you're denying what's happening, I think you're just distracting from what's happening. I think that's healthy. Sometimes you bring you need to get away from it sometimes. Well, you need that to take it, I think in little doses. And I think I'm doing the same thing by throwing myself into this documentary. I don't do you have your book handy by any chance?

Cindy Weinstein: 34:37

I do.

Susie Singer Carter: 34:38

Do you would you go to page 102. Look at this. I'm going to do a production here. I would love you to read at the bottom of page 102. Because you shared this passage online which had me. You're like my sister because of this and I felt like everything you wrote was my experience and by the way, she actually uses hairball as a adjective. I used, too.

Cindy Weinstein: 35:05

Do you?

Susie Singer Carter: 35:05

yes!

Don Priess: 35:05

I think last show we had hairball in our last show. Yes, I'm done with Don said,"hairball?" and I said, oh, like a hairball. Yes she gets it. This is my sister. This is my girl. Okay, we get each other. Thank you. Would you would you mind reading that and and because I think it's it really illuminates probably what a lot of us go through that are have lost loves of our lives.

Cindy Weinstein: 35:34

But back to the part where I forgot my father was dying. A cognitive maneuver that even decades later leaves me reeling in its utter strangeness. Perhaps this forgetting is the very definition of denial, self protection and self immolation all rolled up into one psychic hairball. Anyway, here's what I think happened. I had become so used to visiting him in nursing homes over the decade or so that felt like a lifetime. that at some point, I think I convinced myself that this was the way things were going to be. We're always going to be, this was life. Looking back, I now now realize it was also death. I'm pretty sure I never thought about how my father would die. Maybe some people do. But I somehow knew how he wouldn't. The start date certainly wasn't sometime during his 50s. And the end date wasn't 70. And because the way he was dying wasn't the way he was supposed to, even though exactly how he was supposed to remained unanswered and unposed question, I refuse to acknowledge fully what was happening, I say fully because on the margins of consciousness, I knew, but I could only know for a second or two and then the knowing how to stop, therefore, to use a word that denotes logic, even though the thought process I am describing seems crazy. As he was getting older, I managed to lose track of the passage of time, his sickness froze me, froze him in time and paralyze me. Oddly, I could still do my academic work. In fact, I thrived. The paralysis was loose, localized, but it went to the deepest part of me. So even as his death was happening, I didn't know it. Grasp it grieve, it turns out, I've given myself an anesthetic that has taken about 30 years to wear off.

Susie Singer Carter: 37:23

Wow. So that's it in a nutshell, for me as well. I think that's what this disease does, is that it, it, It's so intense. And there's so much to it, and it's so very long for a lot of people that, that you can easily forget that your person is dying.

Cindy Weinstein: 37:50

It's so weird, because, as Don said, Alzheimer's is many things. It's not just for finding it's not just memory, although I thought it was just memory when I started at UCSF, but the strange thing, at least for me, and Susie, I don't know if this is the case for you, is I started forgetting, like my memory was affected by what was happening. And that sort of mirroring relationship was another thing I wanted to kind of sort through in the book as much as I could, that for example, my father would have difficulty in space. So I have a chapter on spatial disorientation. And I thought Berkeley was my space my home but I was completely disoriented when I was there. So just that as I said mirroring kind of thing Susie, I don't know if you have that experience

Susie Singer Carter: 38:58

I have... What's odd is like I'm think as you're saying that I'm thinking about my the consistent theme of my dreams is always me trying to find out where I'm at and figure out where I am all the time. When and I share that with John all the time I'm somewhere I can't figure out where to go how strange house it's usually a strange, strange building a building that I'm working at. You know, I'm it's some huge venue that I met and for some reason, I cannot find my way back. It's been at universities like it'll be the UCLA but it's not UCLA and I'm, I'm trying to find the entrance and the exit and I can't, I can't figure out the space. So it's interesting that you said and it's reoccurring all the time. I have I had it last night.

Don Priess: 39:50

I've not heard it. Yeah. As far as mirroring.

Susie Singer Carter: 39:52

Yeah. And I think that with that, the stage of like, my mom being at the home and being in her wheelchair for so long. And you know, that stage just felt like it was never going to change. And I just I never thought about how was she going to die? I never thought that. I just kept thinking, how are we going to make everything as comfy and as lovely and as wonderful as possible?

Cindy Weinstein: 40:17

Right?

Don Priess: 40:18

What would be the hardest chapter you had to write? And why was it so difficult?

Cindy Weinstein: 40:24

The behavior chapter was the hardest part to write. And the passage that I just read is from that. And there were a couple of reasons that was so hard. Each chapter in its own way, was very, very difficult. It's funny, because I think,for Bruce, the behavior chapter is probably the easiest one, because his area of expertise is Frontotemporal dementia, which is quite behavioral in terms of how it presents. And so, I had told each chapter, Bruce was great, because like, I would tell him a story. And he would say, okay, Cindy, that's chapter eight, right about that. And I could give some other examples of it. But the one in the behavior chapter, I remember, my father pulled a sink out of the wall, in his nursing home. And Bruce was like, You need to talk about that. And so that behavior chapter was, I think, especially hard to write, because all of the most of the behaviors I write about were ones that I learned about, in a second hand fashion. And still revisiting memories of that also reminded me as if I needed a reminder that unlike you, Susie, I was really far away from my dad, when he was suffering so much. And a lot of the book is about the guilt that comes along with that decision to remain away and pursue one's dream. Even though I knew that my mother and father never would have wanted me to give up that dream, and move to Florida and help take care of him. That's not what they want it. But you're damned if you do, you're damned if you don't. Right. So the behavior chapter was especially hard because I had to continually re confront the decision I had made stay away. And also, the behavior that I wanted to get out that I wanted to write was a very painful one, which was this sound that my father made?

Susie Singer Carter: 43:02

Oh, I read that.

Cindy Weinstein: 43:03

Yes, it's, it's called bruxism, which is like grinding gnashing of teeth. And I think there there's some research about dementia and bruxism. And whether it's part of the disease or a reaction to the medication. That's always like, a big question. And Susie, I know you talk about that. But my dad made this sound, which wasn't words. And I wanted to get back to that sound, and confront it and hear it fully, which moves, emptying my mind of a lot of the other noise that I had packed into my mind. So when I hear that sound. And that was very important for me to write, because that that was probably maybe the hardest memory was the sound. And the image I have of my father making it, but it was almost like a breakthrough. Because once I heard it, I feel like I had confronted, like, maybe the deepest demon. And then I was able to write the chapter on memory, which was a remembrance of my father before he started making that terrible sound.

Unknown: 44:31

Wow. Isn't it Arthur Miller? This is one of my favorite passages when he talks about embracing your idiot child. Do you know that one?

Cindy Weinstein: 44:42

I don't.

Susie Singer Carter: 44:43

Okay, so he talks about and it's been so so powerful, it's what you're saying? It's he says, You know, sometimes the I'm going to bastardize him so sorry, Mr. Miller, but it's it's, you know, sometimes the house smells of baked bread and the other times it smells like burning flesh. And and when it does I turn in, there's this just pickable, ugly, horrible child chasing after me and I'm, oh, I'm running away and running away, and I can't get away. And I keep turning back. And I can't look at this child because he's so disgusting looking. And he said, And finally, ultimately, finally, one day, I just turned and embrace that child. And I realized that that idiot child was me. x

Cindy Weinstein: 45:26

Right. Yep, that's yeah, I just have to say that. It's very gratifying that the story that I tell is resonating, it makes me sad that it resonates because I know what that means in terms of people's pain. But I was always worried that the story of a girl from New Jersey middle class Jewess, you know, becomes an English professor like, like, Can I can I write that story and write, you know, my love for my dad in such a way that people will find themselves in the story. And you know, that me you're, like, the ideal reader, Susie. You too Don, but especially Susie. Just, you know, I'm just very gladdened by that.

Don Priess: 46:24

When you tell the truth, when you tell the truth, that it will resonate, you know, whether you like what you're saying with our film, you didn't think anyone would relate to it?

Cindy Weinstein: 46:34

That's true. Yeah.

Don Priess: 46:36

Phil Rosenthal, who is the showrunner and the creator of Everybody Loves Raymond. And he always says, you know, writing from what you know, is the most powerful, and then the way to reach the most people is in the details, the tiny little details that you think that nobody's going to, you know, like, you know, he always uses an example of like at Christmas, he would give his parents every year, or Hanukah, every year, give her give them like a fruit of the Month Club gift. And every time they'd say,"it's great, why don't do that anymore? Don't give it we don't want this too much fruit. And what we're gonna do with all this fruit, it's a lot of fruit. It's a lot of oranges every month. Phil don't do that. Ma? Everybody loves share it with people." Anyway, he wrote that into the, into one of the episodes. And he said, III think anybody else had that exact same thing? No. But everybody gets it, because it's so real. And it's the details of it. And I think that's the power that we have as storytellers, whether we're, you know, authors or screenwriters or songwriters. Anybody that is telling a story. If it's authentically, you said, Don, and it's an it's and it is detailed, I think it's it does resonate, it'll hit you know, and it becomes a metaphor like, you've never been with a whale, have you? I don't thin!

Cindy Weinstein: 47:59

I have sea sickness.

Susie Singer Carter: 48:03

There you go.

Don Priess: 48:04

There you go.

Susie Singer Carter: 48:05

There you go. I rest my case

Don Priess: 48:08

I mean, we had people literally at the at the festivals come up to it. I mean, you know, we've our stories pretty specific. And Scotland, and you'd like to hear this teenage girl and her mother. And she's like, You told our story. We're like, what? How are we? How did what you just saw tell your story. And I'm sure and I'm interested to see if you've gotten that type of feedback from your book.

Cindy Weinstein: 48:29

The feedbacks really been amazing. And readers have written to me and said, Thank you, you put words to the experience, really appreciate that. And that feedback has given me kind of raison d'être Yes, sure. To do as much outreach with the book as as I can. And so reaching out to you, Susie was an example of that, and doing podcasts, which I had never done before. I'd never been on social media before. We had a publicist for the book, and she was great. And Johns Hopkins has been terrific. But there was a limited amount of time for sure, to publicity. And so I've had a chance to talk sometimes with Bruce sometimes when myself with caregivers, I go to senior centers and talk about dementia and the book, medical humanities groups. They're these things you may have heard of, they're called Alzheimer's Disease Research Centers. They're about 32. In the US, many of them have outreach programs, book clubs, and so I've been working with them to spread the word. And I feel like my dad, I, at one point, I was like, we had a hard time finding a publisher for the book. So when both of you sort of applaud the structure of it, I really appreciate that. But there were many publishers that didn't want to take a chance on it. Because it was too strange. And how would it be described on Amazon? It's in the musculo, musculoskeletal section on Amazon. Lord knows why.

Susie Singer Carter: 50:38

Oh, my gosh,

Don Priess: 50:40

oh, my goodness.

Cindy Weinstein: 50:41

And so at a certain point, when we were having trouble finding a publisher, I was like, I wrote this thing. If it never gets published, so be it. And then various things happened. And we were able to get the book with Johns Hopkins, which was fantastic. And I think my dad would want his experience to be used to help others. So I keep that in mind. When I get a little worried. And Susie, I don't know if you feel this way about telling your mom's story was instrumentalizing. It Yes. making it useful? Yes, in some way. I don't know why

Susie Singer Carter: 51:26

I think about it. I talk about that a lot. I have a big problem with exploiting people. I have a very big problem with that. And I and there's a fine line.

Cindy Weinstein: 51:37

Yes,

Susie Singer Carter: 51:38

There's a very fine line of it. And I I take umbrage to when I see it. I know it when it's when it's when it feels exploitative to me, I feel it and it hurts. I don't like it at all. And I am and there is a lot of that in the community. Now. I didn't use to be like that, but it's more and more. And I yeah, I've been very, I was very fearful of doing that and abusing my mother's condition as as you know, as a tool. But when she was when I was doing I was fearful of using my mom's condition as as you know, as a vehicle. And but when when I when we had finished the film, and we had the trailer together, and I brought it to my mom, and I showed her and I said, Mom, I made a movie about you. And she said, I said, Do you remember Rhoda Valerie Harper? And she said, Yes. And I said, well, she's playing you why? And I said, because you're terrific. And she said, that's true. And I tell her all the time, how many people were falling in love with her and that she was so powerful with her story. And I know that she would be happy with it. And I did it respectfully I didn't. I feel I didn't, you know, reveal anything that she would be ashamed of. Right. And that's that that's my that's my barometer is I wouldn't want to do anything that she would be ashamed of. Even with my documentary coming up, I'm fearful. But I feel like what's going on in that situation is so egregious that, that, you know, we need to, we have to show what's going on? Oh, my God, we've been talking for so this is I could talk another two hours with you.

Cindy Weinstein: 53:43

Ditto.

Susie Singer Carter: 53:44

thank you so much for writing this book. I'm, I love it. I'm I'm savoring it. I'm, I'm i and they will keep it. It's been by my bed. Like, since you sent it to me. And I love it. And I want everyone to get it. If you're not a reader, it's so easy to read. It's just it's just super, you know, Bruce is terrific the way that he describes what is going on. And I think that you know, what's so beautiful is marrying those two perspectives. I think you did an extraordinary job. And I applaud you, and I love you. And I think that you know, and I want you to I want you to not to feel guilty about because you're you're right, your dad wouldn't have wanted you to leave school. And my mother like she says in the movie. You have to put me in a home you have to live your life.

Cindy Weinstein: 54:40

Yes. Yeah.

Susie Singer Carter: 54:42

And that's And I know just by the way you describe your father, he felt the same way. So you did you did him good. You did him proud. And you were there at the important time. Okay, and so and so as i i You know, I wasn't too Helicopter daughter. And even though we live in the same city, I saw my mom once a week because I felt satisfied. But once I realized I was mistaken, you know, in terms of her care, that's when I decided I had to be there almost every day. But that's that was my decision. I and I gave into it because I knew I for me, not for my mom for me and her but I mean, that's what I needed to be there. And so, and I and I made a conscious decision. And and that's, and I don't regret it. But I also don't regret having to put her in the home because I had to. There was nothing that I couldn't do it on my own. And that's the problem with our health care system.

Cindy Weinstein: 55:41

Yes.

Susie Singer Carter: 55:43

That's the problem. So don't I feel like you did you you done your your daddy proud.

Cindy Weinstein: 55:49

Thank you.

Susie Singer Carter: 55:50

And he was a beautiful daddy. I saw that pictures of him as as as the sporty dad and he is he's I have a crush on him. I don't know. He's a good like, he's a good looking guy. I would have dated him.He was a cutie. Super cutie pie.

Cindy Weinstein: 56:08

Yeah. Yeah.

Don Priess: 56:10

Was there anything else you wanted to add or say something we missed are we good to go?.

Cindy Weinstein: 56:17

Perfect.

Don Priess: 56:17

Excellent.

Susie Singer Carter: 56:18

Great. Well, it's apropos that you loved your dad so much. I love my mom so much. And, you know, why is it so apropos, Donald?

Don Priess: 56:27

Well, that's because love is powerful. Love is contagious. And Love Conquers Alz. So we thank everyone for for watching today. Please buy Cindy's book. We will. We'll put up all the information. And you know, we'll see you next time. Like, subscribe, do all those fun things.

Susie Singer Carter: 56:45

And kiss everyone that you love. Kiss them twice.

Don Priess: 56:47

Absolutely

Susie Singer Carter: 56:49

Subscribe. Bye.

Cindy Weinstein: 56:50

Bye bye.