October 23, 2022 • 56 mins
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
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Cindy Weinstein (00:00):
When the world has gotcha down, and
Don Priess (00:03):
Alzheimer's sucks.
It's an equal opportunitydisease that chips away at
everything we hold dear. And todate, there's no cure. So until
there is we continue to fightwith the most powerful tool in
our arsenal. Love. This is LoveConquers Alz is a real and
really positive podcast thattakes a deep dive into
(00:23):
everything. Alzheimer's, TheGood, the Bad, and everything in
between. And now, here are yourhosts Susie Singer Carter, and
me, Don Priess.
Susie Singer Carter (00:36):
Hi, I'm Susie Singer Carter.
Don Priess (00:39):
And I'm Don Priess and this is Love Conquers Alzs.
Hello, Susan.
Susie Singer Carter (00:43):
Hi, Donald.
Don Priess (00:45):
How are ya?
Susie Singer Carter (00:47):
Flustered this morning? Took me 10 takes
to say good morning. I don'tknow wha's going on.
Don Priess (00:53):
Well, just wait till I have to read our guest's
introduction. It's gonna be ohmy goodness. It's gonna be
crazy.
Susie Singer Carter (01:00):
There's words in there. There's a lot of
words and there's words that wedon't know. They're hard words.
Because you know why?
Don Priess (01:07):
Why?
Susie Singer Carter (01:08):
She's smart. Super, very smart. Yeah.
Wait. She's so smart. You guys,get ready. She's smart, she's
Lovely.
Don Priess (01:18):
so what's happening?
Susie Singer Carter (01:19):
Ummm, I had my flu shot yesterday. So any,
any kinds of mistakes or fauxpas or, you know, bad, paler?
I'm blaming on the flu shotbecause I have an excuse.
Don Priess (01:32):
Right. You've had a crazy week, haven't you?
Susie Singer Carter (01:35):
Yes, I have my daughter made a new human, a
human being, a little human nameGeorgia. Lovey. And Lovey was my
mom's nickname growing up andall through her adulthood. And
my my daughter honored her withthat name. So we have a little a
little Georgie, in our familyand she looks exactly like my
(01:57):
daughter when she was born. Andshe weighed this exact same
weight and the end she measuredthe exact same length. And may I
add that she is olive tone withbrown hair. Just like my mom, I
just saying.
Don Priess (02:13):
You are just saying.
Susie Singer Carter (02:14):
I'm just saying so yeah, it has been a
year of losses and gains a ndand such as life. But, yeah,
here we are,
Don Priess (02:24):
I would get I would get very trite and say the
circle of life but I will not dothat.
Susie Singer Carter (02:31):
(Sings Lion KIng) Where's my Yorkie? he's
always good for that.
Don Priess (02:36):
I don't think we have the budget for the songs.
Susie Singer Carter (02:39):
So, Don, I've never been in a community
like this that's so soenriching. I feel like I'm
learning all the time. And I'mI'm feeling heard all the time.
It just makes you feel good. Andthis this guest in particular,
her perspective on this disease,Alzheimer's and dementia and the
(03:00):
journey and the loss is somirror to what the way I feel
it's so validating to hearsomebody else have that
perspective. Who's already gonethrough what I'm going through
right now. I can't wait to sharethat with everybody. So why
don't you introduce our veryamazing guest?
Don Priess (03:19):
Absolutely. Our amazing guest today is Professor
Cindy Weinstein, and she iscurrently the Ely and Edith
Broad, professor of English atthe California Institute of
Technology. Since 1989. She hashad several administrative roles
at Caltech, including ViceProvost and chief diversity
officer in 2018 and 19. She wasan Atlantic fellow in the global
(03:41):
brain health institute based atUCSF and Trinity College Dublin,
where she studied neurology withan interdisciplinary group of
scientists, artists, socialscientists, and physicians. She
has published three monographson American literature, taught
classes on Herman Melville,Edgar Allan Poe, women's fiction
and African American literature.
But most recently, she hasshared her personal stories and
(04:04):
professional expertise, and ahumorous yet poignant memoir,
Finding the Right Words, areflection upon her father's
experience with early onsetAlzheimer's, in conversation
with a distinguishedneurologist, Dr. Bruce Miller.
It's a truly intimate andilluminating work that ventures
to explain how this diseaseattacks the brain. And we are so
looking forward to learningmore, so let us not wait any
(04:27):
longer. Please. Welcome and sayhello to Professor Cindy
Weinstein. Hello, Cindy.
Susie Singer Carter (04:36):
Hi, Cindy.
It's so great to have you here.
What an honor to have you it'swhat a brilliant mind and what a
big heart you have.
Cindy Weinstein (04:45):
Thank you. I feel very much the same way. I
your podcast is extraordinary.
The way it combines informationand emotion and humor. It's just
a beautiful thing you're giving
Susie Singer Carter (04:59):
Awww, thank you. Well, thank you for
to the community.
this, too. This great book thatI'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 goodinformation in it. And being
able to use the literature asmetaphor. And using that as a
tool, we forget how powerfulmetaphors are, I use it as a
(05:22):
filmmaker all the time. I reallyhighly recommend this book, you
guys, I really do finding theright words, it's really good.
And if you've been through thisjourney, there's so much in it
that will will resonate withyou, and, and also enlighten you
as to what you and your personwere going through at each
(05:45):
stage. It's brilliant. It's abrilliant, it's a brilliant
concept. So yes, yes. So I wantto dive in so bad. There's so
much I want to say I'veearmarked some things from your
book that I want to talk about.
But why don't you share yourstory of your father who had
early onset Alzheimer's and giveus just a brief background on on
that because I everyone'severyone's origin story is a
(06:07):
little different.
Cindy Weinstein (06:09):
Sure. My father was diagnosed with Alzheimer's
in the 80s. I was in graduateschool at Berkeley from 1982 to
89. And a few years in, I wasrealizing that something was
(06:31):
wrong with my dad. In the book,the first chapter is diagnosis.
And I uncovered the fact that Isort of knew something was
wrong, Before we officially gotthe diagnosis. And I noticed in
particular, a word findingdifficulty and the conversations
(06:54):
that I used to have with my dad,I was very, very close to him.
They became monosyllabic, my dadwould just give my mom the
phone, they were in Florida atthe time. And the communication
was not what it used to be. AndI also noticed that in those
(07:15):
days, when you wrote letters topeople or type letters, my dad's
typing was full of typos. Andhis handwriting was even worse
than it used to be writing nevera very good handwriting to begin
with. And my parents would visitme in Berkeley. And the origin
(07:36):
story for the book, really was atrip to the supermarket in
Berkeley. And my father wantedsomething in the salad for
dinner, and didn't know the wordfor it. And it turned out what
he wanted was Krypton. And Idescribe in a chapter on word
(08:01):
finding, just sort of the horrorof seeing the disease expressed
in that way. And thesynchronicity of my father
losing words while I wasbecoming an English professor.
And gaining expertise in burrowswas something I had been chewing
(08:24):
on for decades, and knew that Ineeded to come to terms with it
in some way. And that was thefirst part of the book that I
wrote the story about, trying tohelp my dad get to a word.
Susie Singer Carter (08:40):
It's interesting, because we all lose
words, right? I do it all thetime. And of course, with my mom
having Alzheimer's, I panic eachand every time. And so, you
know, it's it's a really, isthere anything that you could
enlighten anybody listening?
That might be also ya know,searching for a word? And I know
sometimes it comes from beingtired or overworked or not
(09:03):
sleeping enough, and, and welose words, Don, and I do it all
the time. When is it a problem?
When should we worry about it?
Cindy Weinstein (09:12):
I studied neurology for a year. And as I
told my friends, that can be adangerous thing. So to answer
your question, I really, Ireally have difficulty answering
that question. I guess. Thereare different problems people
have with words. And I rememberBruce explaining to me there's
(09:34):
the version where the word isjust gone. There's the version
where you have the dictionary inyour brain, but you can't get to
the right page. There's aversion where, like,
biologically you can't see theword that there is something
happening. aphasia. Exactlyright. So I'm going to answer a
(09:58):
slightly different questionandAnd if that's okay,
Susie Singer Carter (10:01):
Oh, sure, sure. Yeah. And I just can I
just say that but when an objectand just say that, I hear what
you're saying, and and I noticedthat. And I think that even with
my mom at the end stage, whenshe was had lost her ability to
speak, other than she said, Ilove you to me, loud and clear.
(10:22):
I saw her searching for thewords, I saw her look to the
right. Try to try to think ofsomething and then come back to
me and it was gone. And I knowit was gone. Because I'd say to
her, I see you, I see youlooking for those words. You got
words for me, don't you and shewould just squeeze my hand I go,
you know, so I knew that. It'salmost like the second thing
(10:45):
that you had mentioned, youknow, like, the word is there.
She just can't, she can'tconnect it. And when she said, I
love you, I said to her. Holyshit. That was a huge thing you
just did for her to pull thosewords together, and actually get
them out of her mouth was agift. So I do I hear you loud
(11:06):
and clear.
Cindy Weinstein (11:07):
I'm so glad we got that. And I would just say
that. One of the ironies ofreading the book and looking
back on it is me realizing thatwords are important, and I love
them, but they're not allthey're cracked up to be. Um, so
even though my father couldn'tsay I love you, I knew it. It
(11:29):
didn't matter. And that's beenan interesting thing to get to,
after writing this book, whichis, you know, a letter to how
much I love my dad, how much Ilove literature, how much I love
language, to realize thelimitations of that. But what I
(11:50):
was gonna say as I read thisbook 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 aword, and oh, my God, what's
happening to me. And what Ireally liked about one of the
chapters she wrote about waslike, it's okay to use
technology. Like, sometimesinstead of like going into a
(12:15):
tailspin, especially if you havea 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! thankyou so much. Love you love it.
It's the best. Yeah, no, you'reabsolutely right. You're
absolutely right.
Cindy Weinstein (12:36):
Because you're still tests that you might fail,
because that's just gonna, thatdoesn'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 thestress you're under, think about
Don Priess (12:46):
Just because you're you've lost the you know, some
the cortisol that's runningthrough your coursing through
of that skill. You know, I thinkyou have to look at other
behaviors before you startsaying, 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 aregoing on. And I think you have
You know, it's like when yousend it like sometimes when you
to combine that before you startsaying, Oh, my God, I have
Alzheimer's, right? Because Ican't think of a word.
(13:07):
sit in a room and go, Why am Ihere? Why was I going over here?
It's because you're thinkingabout something else? Right? So
yeah, we shouldn't panicimmediately when those things
(13:29):
start happening, you have tolook 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 youneed a CPAP. Or you're not
hearing as well as you need to.
And so think about gettinghearing aids. And now with the
new law that was passed that youcan get hearing aids over the
counter. Yes. Huge.
Susie Singer Carter (13:57):
Amazing.
Yeah. Can I say something toyou, Cindy, just in terms of
like, your dad, you know, hesaid, I love you all the time.
You don't really have to, and Isay this to people and I want to
just say it to us that you onlyhave to look at a baby to know
when a baby loves you withoutwords. Right? Well before they
can talk well before they canthey know any word and you know
(14:19):
whether they love you or whetherthey're afraid of you or whether
they're nervous, or you can youcan read so much without words.
You can do that with pets. Youknow, we don't have words with
pets, but we can look at them inthe eye. And they know and we
know what they know. So, rightand so there's so much to be
(14:40):
said about you know, justnonverbal communication is
powerful. Words are beautifulwords 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. Youknow, That's just the words are
you know, we are we have moregoing on up here that that
allows us to communicate withoutwithout actually hearing them.
So yeah, I think words areoverrated is is right on.
Susie Singer Carter (15:14):
I feel like this is such an obvious
question. But what led you towriting Finding the Right Words?
Cindy Weinstein (15:20):
I wanted to write the story of my father,
and how much I loved thisperson. And it took me a really
long time to figure out how Iwas going to tell that story.
(15:40):
There are, as you know, manymemoirs about dementia about
Alzheimer's. And I wanted thebook I wrote, not only to tell
the story of my grief and thestory of my father's illness,
and in the last chapter, thestory, the funny stories,
(16:04):
everything I just adored aboutmy dad, and we can talk about
how I kind of recovered thosememories. But I also wanted to
use the book as a way to helpreaders. And I think because
I've been at Caltech for solong, I wanted the voice of
(16:25):
science of a doctor, I wanted togive the readers information
about dementia in a way that wasreader friendly. And I wanted
images in the book, so that whena family goes to the primary
(16:46):
care physician or theneurologist, it wouldn't be the
first time they would see a pet,or they would hear the word
periatal lobe, or they wouldhear the word primary
progressive aphasia. I almostwanted to arm the reader with
language, because it's so scary,you know, usually going into the
(17:07):
doctor's office, and much of thepower is on one side. Although I
have some ideas about how tolevel that out a little bit. And
so it took me a while to findBruce I initially wanted, I
thought maybe I could work withsomeone at Caltech, we don't
really do very much work ondementia. We're starting to do
(17:29):
research on Parkinson's, butless on Alzheimer's,
Frontotemporal dementia, Lewybody. 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. Andthen I found someone at Santa
(17:50):
Barbara. And he really liked theidea. But the scientists are
constantly traveling every timeI had a conversation with him,
it was an it was in an airportbecause 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 ourindustry.
Cindy Weinstein (18:07):
There ya go, yeah! And then that person sent
me to Bruce Miller, and I sentan email to Bruce, I told him my
idea, and met with him, we'vereally hit it off. And he said
to me the magic words, do youwant to learn some science? And
I said, Yes, I do. Because I hadworked so long, Susie, with what
(18:31):
you were saying sort ofliterature's a metaphor for
grief and sadness. But I knew Ineeded another language to tell
the story of my father'sillness, and also to make sense
of my relation to it. And I hada feeling that if I learned some
neurology and worked with aresearcher, I would be able to
(18:56):
do what I needed to do to tellthe story.
Susie Singer Carter (18:58):
It's so smart, and it's so beautiful.
And it's so novel, bVernuecauseI 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 thiswonderful avuncular kind of guy
who, who's like, yeah, Want tolearn some science, it's like,
(19:18):
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 somuch, that he's just, you know,
bringing you into his world. Letme tell you why that's
happening. And that's such agreat thing, because it's it,
you know, it makes it accessiblefor 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 thebrain 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 ingeneral. You know, that I, I
always say that there's, youknow, there's the science and
there's the data. And thenthere's the individual. And
there's something magical aboutthe individual that can trump
the data sometimes. And that'swhy we have to be we need to be
(20:13):
informed on in all areas. Sothat we can say, okay, there's
the data, but who's this personwe'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 adifferent direction than say
that person. Right? Right. AndI, I love that because it
doesn't throw us all into thesame box,
Cindy Weinstein (20:38):
Right. A couple of things I just to respond to
that I wanted to giveinformation via Bruce, to
educate people about the scienceand also about the grief process
and what it might look like. Thething is that a lot of people
can't get to UCSF. And there arepeople in rural communities,
(21:03):
there are underrepresentedpopulations that have difficulty
getting into these clinicaltrials. And there are a lot of
researchers who were workingvery hard on diversity, equity
and inclusion with respect tothese trials. And I wanted to be
able to give people access toBruce, through this book and to
(21:26):
his expertise. And the programthat I was in is called the
global brain health initiativeis devoted in large part to
access around the world. And sothe program that I was in,
people were from Botswana,Jamaica, through Brazil, it was
(21:48):
extraordinary.
Susie Singer Carter (21:49):
Wow, it makes me feel so happy that
there's that much interest allover. Well, there's so many
people that at least in mycircle, that don't want to look
at this, don't care to look atit. And you know, there's a lot
of lalalala going on. I'm guiltyof 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, youknow, I'll I'll close my eyes.
And if I don't see it, it's notthere.
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 andembodied 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
(22:50):
with that story was justextraordinary. Her connection?
Cindy Weinstein (22:56):
Yeah, you could tel. Yeah, what I loved also
about the movie, it reallyconfirmed, something that Bruce
talks about with dementia. Andthat is when certain parts of
the brain aren't working, aswell as they might, other parts
(23:16):
light up. And so he has atheory, and I think has data to
support it, that the empathycircuitry in Alzheimer's gets
really activated even more inthe absence of language and
(23:39):
other parts of the disease. Andso the moment in the film, where
your mom played by Valerie istalking to the trans person. And
that just blew my mind that wasjust just magnificent. Just to
see the ability, her ability to,even in her illness to make
(24:04):
someone feel so good and sowhole 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 caregiverhas 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
(24:33):
certain time period. Yeah. Thatresonated 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 werelike, is anyone going to relate
to any of this? It's sopersonal. And you realize and I
think you probably realize thiswith your book. There's so much
shared experience, even thoughit's a completely unique moment,
the experience itself is ashared experience. And that's
(25:08):
why it's so interesting when youwhen 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 ourfilm 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 sogreat. You know, it would be
great. But you know, so wetalked about the structure of
your book, which I love yourstructure of it. I love the
stories that that touch ourhearts that make us laugh that
make us cry, you know, and yourlove for your father is so
palpable. But I need to ask whyMoby Dick was such a huge part
(26:00):
of this narrative. And why isthat, 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 MobyDick for the first time when I
was 16. And I was the kind ofstudent like if the teacher
said, of this is like thehardest book, like, don't, don't
work on this, because you'llnever understand it. Like,
(26:30):
that's the thing that I wantedto figure out. So I read it in
high school for the first time.
And then I read it again incollege twice. And I think part
of it, there's a lot going intoit. But one of the things has to
do with the people, I wasreading it with my teachers, I
loved my teachers, and theypushed me to understand this
(26:56):
really complicated book. Andthen when my dad got sick, they
weighed in on how I might wantto think about pursuing my
career or putting my career onhold. Still, the novel itself.
(27:16):
is, is important to me, bothbecause I love the book, and
I'll talk about that in aminute, but also in relation to
where I was at particular timesin my life when I was reading
it. So there's that. And what Ialso discovered is with each
(27:40):
rereading, I would get somethingnew out of the book. My favorite
thing to do with my students isjust to take a paragraph or two
and walk them through how Melvilgets from point A to point B,
how he enacts Ralph WaldoEmerson's transcendental ideas
(28:02):
in the novel, just, the languageis just gorgeous. So I love
talking to my students aboutthat. It's a really funny book.
And I love bringing out thehumor with my students. Because
I think there's a there's a waythat people are sort of
frightened of the book. And it'sreally fun to work with students
(28:27):
to get them to sort of take thenovel off of its pedestal. But
the main thing is the story ofIshmael and Ahab, and I can kind
of over the years, I was able totake my emotional temperature,
based on which character I wasidentifying with. And Ishmael is
(28:50):
really funny, and very processoriented. And he doesn't really
care if he gets to a conclusionor not, the fun of it for him,
is just trying to figure it outand writing about it, whereas
(29:11):
Ahab thinks he's got it allfigured out. And he's full of
anger and fear, and authority.
And when I've identified withAhab's pain, too much, and this
(29:32):
was really the case when myfather was first diagnosed, like
I understood Ahab in a way thatI wish I had never been able to
understand, like wanting to getout in the world and destroy
something that represented thething that was causing me so
(29:53):
much pain. Wow. And when I wasfeeling better I was able to
embrace ish males position. Andso it's just been a kind of
guideposts for me throughout mylife and one of my favorite
chapters in the novel is Ishmaeldescribes the ability of the
(30:17):
whale, its eyes are placed oneither side of the head, and
that the whale can hold twocompletely different pictures in
its mind at one time. And Ithink that that is something I
have aspired to, as I've come toterms with my father's illness,
(30:42):
the ability to see that terriblethings that really sad things
are really painful things whichI confronted in finding the
right words. But then also, thewonderful things together.
Susie Singer Carter (30:57):
Yes, the gifts that when what Bruce said,
and I stayed in my rudimentaryways that you know, when, when
some as some skills leave,others are replaced by other
things that are that arestronger and more and more
potent, and they are the gifts,right? They are the gifts like
(31:19):
you like the empathy that thatgets pumped. You know, it's
interesting, because I haveshied away from classics,
because of just what you said Iwas, so want to take your class
now. I do. I mean, I just, Ijust started reading Crime and
Punishment for the first timebecause it scared the hell out
of me. And I thought, I need toread something that's, you know,
(31:43):
scary. And because I need totest myself and challenging
myself, and I'm not sure I likeit. I'm halfway through, I'm not
sure it was the best firstchoice of that kind of
literature, but I'm still tryingto wrap my head around the
(32:04):
characters, and they're, they'renot very likable. And I'm trying
to find the what know that takeaway?
Don Priess (32:14):
Yeah, you know, I was just gonna say that, you
know, you just said that you'vethat literature to help you
understand your, your father'ssuffering, your own pain. But
you've also said that it allowsyou to deny what was happening,
how does that work?
Cindy Weinstein (32:27):
It was complicated. I think that. And
this is such an Englishprofessor thing to say, like it
did both. It allowed me to pourmy energy into understanding
other people's pain, becauseliterature is often about grief
(32:52):
and about pain. And so I wouldbe reading, I don't know,
Lolita, an American tragedy byDreiser. And just the act of
moving my attention away from mydad, and what was happening with
him to something else was sortof a way for me to kind of
(33:18):
temporarily deny or put to theside what was going on with my
father. At the same time, as thebooks, I was most attracted to
Moby Dick being probably numberone. There was like a, it was
like the door was ajar in thenovel, to let me in just very
(33:42):
small doses. Think about whatwas happening with my dad. So it
was a funny combination of, Idon't need to think about what's
happening, I can roll my, mybrain into this other endeavor,
(34:04):
at the same time, as it was awindow 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 theway it's when you say you know
that you're denying what'shappening, I think you're just
distracting from what'shappening. I think that's
healthy. Sometimes you bring youneed 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 thingby throwing myself into this
(34:34):
documentary. I don't do you haveyour 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 aproduction here. I would love
you to read at the bottom ofpage 102. Because you shared
this passage online which hadme. You're like my sister
because of this and I felt likeeverything you wrote was my
experience and by the way, sheactually uses hairball as a
(35:03):
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 mygirl. Okay, we get each other.
Thank you. Would you would youmind reading that and and
because I think it's it reallyilluminates probably what a lot
(35:27):
of us go through that are havelost loves of our lives.
Cindy Weinstein (35:34):
But back to the part where I forgot my father
was dying. A cognitive maneuverthat even decades later leaves
me reeling in its utterstrangeness. Perhaps this
forgetting is the verydefinition of denial, self
protection and self immolationall rolled up into one psychic
hairball. Anyway, here's what Ithink happened. I had become so
(35:58):
used to visiting him in nursinghomes over the decade or so that
felt like a lifetime. that atsome point, I think I convinced
myself that this was the waythings were going to be. We're
always going to be, this waslife. Looking back, I now now
realize it was also death. I'mpretty sure I never thought
about how my father would die.
Maybe some people do. But Isomehow knew how he wouldn't.
(36:20):
The start date certainly wasn'tsometime during his 50s. And the
end date wasn't 70. And becausethe way he was dying wasn't the
way he was supposed to, eventhough exactly how he was
supposed to remained unansweredand unposed question, I refuse
to acknowledge fully what washappening, I say fully because
(36:40):
on the margins of consciousness,I knew, but I could only know
for a second or two and then theknowing how to stop, therefore,
to use a word that denoteslogic, even though the thought
process I am describing seemscrazy. As he was getting older,
I managed to lose track of thepassage of time, his sickness
froze me, froze him in time andparalyze me. Oddly, I could
(37:03):
still do my academic work. Infact, I thrived. The paralysis
was loose, localized, but itwent to the deepest part of me.
So even as his death washappening, I didn't know it.
Grasp it grieve, it turns out,I've given myself an anesthetic
that has taken about 30 years towear off.
Susie Singer Carter (37:23):
Wow. So that's it in a nutshell, for me
as well. I think that's whatthis disease does, is that it,
it, It's so intense. And there'sso much to it, and it's so very
long for a lot of people that,that you can easily forget that
(37:46):
your person is dying.
Cindy Weinstein (37:50):
It's so weird, because, as Don said,
Alzheimer's is many things. It'snot just for finding it's not
just memory, although I thoughtit was just memory when I
started at UCSF, but the strangething, at least for me, and
(38:11):
Susie, I don't know if this isthe case for you, is I started
forgetting, like my memory wasaffected by what was happening.
And that sort of mirroringrelationship was another thing I
wanted to kind of sort throughin the book as much as I could,
(38:33):
that for example, my fatherwould have difficulty in space.
So I have a chapter on spatialdisorientation. And I thought
Berkeley was my space my homebut I was completely disoriented
when I was there. So just thatas I said mirroring kind of
(38:55):
thing Susie, I don't know if youhave that experience
Susie Singer Carter (38:58):
I have...
What's odd is like I'm think asyou're saying that I'm thinking
about my the consistent theme ofmy dreams is always me trying to
find out where I'm at and figureout where I am all the time.
When and I share that with Johnall the time I'm somewhere I
can't figure out where to go howstrange house it's usually a
(39:18):
strange, strange building abuilding that I'm working at.
You know, I'm it's some hugevenue that I met and for some
reason, I cannot find my wayback. It's been at universities
like it'll be the UCLA but it'snot UCLA and I'm, I'm trying to
find the entrance and the exitand I can't, I can't figure out
(39:41):
the space. So it's interestingthat you said and it's
reoccurring all the time. I haveI 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 thehome and being in her wheelchair
for so long. And you know, thatstage just felt like it was
never going to change. And Ijust I never thought about how
was she going to die? I neverthought that. I just kept
thinking, how are we going tomake everything as comfy and as
(40:14):
lovely and as wonderful aspossible?
Cindy Weinstein (40:17):
Right?
Don Priess (40:18):
What would be the hardest chapter you had to
write? And why was it sodifficult?
Cindy Weinstein (40:24):
The behavior chapter was the hardest part to
write. And the passage that Ijust read is from that. And
there were a couple of reasonsthat was so hard. Each chapter
in its own way, was very, verydifficult. It's funny, because I
think,for Bruce, the behaviorchapter is probably the easiest
(40:45):
one, because his area ofexpertise is Frontotemporal
dementia, which is quitebehavioral in terms of how it
presents. And so, I had toldeach chapter, Bruce was great,
because like, I would tell him astory. And he would say, okay,
(41:07):
Cindy, that's chapter eight,right about that. And I could
give some other examples of it.
But the one in the behaviorchapter, I remember, my father
pulled a sink out of the wall,in his nursing home. And Bruce
was like, You need to talk aboutthat. And so that behavior
(41:28):
chapter was, I think, especiallyhard to write, because all of
the most of the behaviors Iwrite about were ones that I
learned about, in a second handfashion. And still revisiting
memories of that also remindedme as if I needed a reminder
(41:54):
that unlike you, Susie, I wasreally far away from my dad,
when he was suffering so much.
And a lot of the book is aboutthe guilt that comes along with
that decision to remain away andpursue one's dream. Even though
(42:20):
I knew that my mother and fathernever would have wanted me to
give up that dream, and move toFlorida and help take care of
him. That's not what they wantit. But you're damned if you do,
you're damned if you don't.
Right. So the behavior chapterwas especially hard because I
had to continually re confrontthe decision I had made stay
(42:43):
away. And also, the behaviorthat I wanted to get out that I
wanted to write was a verypainful 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. AndI think there there's some
research about dementia andbruxism. And whether it's part
of the disease or a reaction tothe medication. That's always
(43:23):
like, a big question. And Susie,I know you talk about that. But
my dad made this sound, whichwasn't words. And I wanted to
get back to that sound, andconfront it and hear it fully,
(43:46):
which moves, emptying my mind ofa lot of the other noise that I
had packed into my mind. So whenI hear that sound. And that was
very important for me to write,because that that was probably
maybe the hardest memory was thesound. And the image I have of
(44:09):
my father making it, but it wasalmost like a breakthrough.
Because once I heard it, I feellike I had confronted, like,
maybe the deepest demon. Andthen I was able to write the
chapter on memory, which was aremembrance of my father before
he started making that terriblesound.
Unknown (44:31):
Wow. Isn't it Arthur Miller? This is one of my
favorite passages when he talksabout 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'resaying? It's he says, You know,
sometimes the I'm going tobastardize him so sorry, Mr.
Miller, but it's it's, you know,sometimes the house smells of
baked bread and the other timesit smells like burning flesh.
And and when it does I turn in,there's this just pickable,
(45:06):
ugly, horrible child chasingafter 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 lookat this child because he's so
disgusting looking. And he said,And finally, ultimately,
finally, one day, I just turnedand embrace that child. And I
realized that that idiot childwas me. x
Cindy Weinstein (45:26):
Right. Yep, that's yeah, I just have to say
that. It's very gratifying thatthe story that I tell is
resonating, it makes me sad thatit resonates because I know what
that means in terms of people'spain. But I was always worried
(45:51):
that the story of a girl fromNew Jersey middle class Jewess,
you know, becomes an Englishprofessor 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 findthemselves in the story. And you
(46:12):
know, that me you're, like, theideal 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'tthink 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 LovesRaymond. And he always says, you
know, writing from what youknow, is the most powerful, and
then the way to reach the mostpeople is in the details, the
tiny little details that youthink that nobody's going to,
you know, like, you know, healways uses an example of like
(46:56):
at Christmas, he would give hisparents every year, or Hanukah,
every year, give her give themlike 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'twant this too much fruit. And
what we're gonna do with allthis fruit, it's a lot of fruit.
(47:17):
It's a lot of oranges everymonth. Phil don't do that. Ma?
Everybody loves share it withpeople." Anyway, he wrote that
into the, into one of theepisodes. And he said, III think
anybody else had that exact samething? No. But everybody gets
it, because it's so real. Andit's the details of it. And I
think that's the power that wehave as storytellers, whether
(47:39):
we're, you know, authors orscreenwriters 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 doesresonate, 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. Andshe's like, You told our story.
We're like, what? How are we?
How did what you just saw tellyour story. And I'm sure and I'm
interested to see if you'vegotten 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 appreciatethat. And that feedback has
(48:50):
given me kind of raison d'êtreYes, sure. To do as much
outreach with the book as as Ican. And so reaching out to you,
Susie was an example of that,and doing podcasts, which I had
(49:12):
never done before. I'd neverbeen on social media before. We
had a publicist for the book,and she was great. And Johns
Hopkins has been terrific. Butthere was a limited amount of
time for sure, to publicity. Andso I've had a chance to talk
(49:36):
sometimes with Bruce sometimeswhen myself with caregivers, I
go to senior centers and talkabout dementia and the book,
medical humanities groups.
They're these things you mayhave heard of, they're called
Alzheimer's Disease ResearchCenters. They're about 32. In
the US, many of them haveoutreach programs, book clubs,
(49:57):
and so I've been working withthem to spread the word. And I
feel like my dad, I, at onepoint, I was like, we had a hard
time finding a publisher for thebook. So when both of you sort
of applaud the structure of it,I really appreciate that. But
(50:17):
there were many publishers thatdidn't want to take a chance on
it. Because it was too strange.
And how would it be described onAmazon? It's in the musculo,
musculoskeletal section onAmazon. 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 apublisher, I was like, I wrote
this thing. If it never getspublished, so be it. And then
various things happened. And wewere able to get the book with
Johns Hopkins, which wasfantastic. And I think my dad
(51:04):
would want his experience to beused to help others. So I keep
that in mind. When I get alittle worried. And Susie, I
don't know if you feel this wayabout telling your mom's story
was instrumentalizing. It Yes.
making it useful? Yes, in someway. 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 withexploiting people. I have a very
big problem with that. And I andthere'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. Iknow it when it's when it's when
it feels exploitative to me, Ifeel it and it hurts. I don't
like it at all. And I am andthere is a lot of that in the
community. Now. I didn't use tobe like that, but it's more and
more. And I yeah, I've beenvery, I was very fearful of
(52:05):
doing that and abusing mymother's condition as as you
know, as a tool. But when shewas when I was doing I was
fearful of using my mom'scondition as as you know, as a
(52:34):
vehicle. And but when when Iwhen 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, Imade a movie about you. And she
said, I said, Do you rememberRhoda 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 Itell her all the time, how many
(52:58):
people were falling in love withher and that she was so powerful
with her story. And I know thatshe 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'sthat that's my that's my
barometer is I wouldn't want todo anything that she would be
(53:21):
ashamed of. Even with mydocumentary coming up, I'm
fearful. But I feel like what'sgoing 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 twohours 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 savoringit. 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 wanteveryone to get it. If you're
not a reader, it's so easy toread. It's just it's just super,
(54:09):
you know, Bruce is terrific theway that he describes what is
going on. And I think that youknow, what's so beautiful is
marrying those two perspectives.
I think you did an extraordinaryjob. And I applaud you, and I
love you. And I think that youknow, and I want you to I want
you to not to feel guilty aboutbecause you're you're right,
(54:30):
your dad wouldn't have wantedyou to leave school. And my
mother like she says in themovie. 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 feltthe same way. So you did you did
him good. You did him proud. Andyou were there at the important
time. Okay, and so and so as i iYou know, I wasn't too
Helicopter daughter. And eventhough we live in the same city,
(55:03):
I saw my mom once a week becauseI felt satisfied. But once I
realized I was mistaken, youknow, in terms of her care,
that's when I decided I had tobe there almost every day. But
that's that was my decision. Iand I gave into it because I
knew I for me, not for my momfor me and her but I mean,
that's what I needed to bethere. And so, and I and I made
(55:27):
a conscious decision. And andthat's, and I don't regret it.
But I also don't regret havingto put her in the home because I
had to. There was nothing that Icouldn't do it on my own. And
that's the problem with ourhealth 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 yourdaddy 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 thesporty dad and he is he's I have
a crush on him. I don't know.
He's a good like, he's a goodlooking guy. I would have dated
him.He was a cutie. Super cutiepie.
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 goodto go?.
Cindy Weinstein (56:17):
Perfect.
Don Priess (56:17):
Excellent.
Susie Singer Carter (56:18):
Great.
Well, it's apropos that youloved 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 ConquersAlz. So we thank everyone for
for watching today. Please buyCindy's book. We will. We'll put
up all the information. And youknow, we'll see you next time.
Like, subscribe, do all thosefun 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.
When the world has gotcha down, and
Don Priess (00:03):
Alzheimer's sucks.
It's an equal opportunitydisease that chips away at
everything we hold dear. And todate, there's no cure. So until
there is we continue to fightwith the most powerful tool in
our arsenal. Love. This is LoveConquers Alz is a real and
really positive podcast thattakes a deep dive into
(00:23):
everything. Alzheimer's, TheGood, the Bad, and everything in
between. And now, here are yourhosts Susie Singer Carter, and
me, Don Priess.
Susie Singer Carter (00:36):
Hi, I'm Susie Singer Carter.
Don Priess (00:39):
And I'm Don Priess and this is Love Conquers Alzs.
Hello, Susan.
Susie Singer Carter (00:43):
Hi, Donald.
Don Priess (00:45):
How are ya?
Susie Singer Carter (00:47):
Flustered this morning? Took me 10 takes
to say good morning. I don'tknow wha's going on.
Don Priess (00:53):
Well, just wait till I have to read our guest's
introduction. It's gonna be ohmy goodness. It's gonna be
crazy.
Susie Singer Carter (01:00):
There's words in there. There's a lot of
words and there's words that wedon't know. They're hard words.
Because you know why?
Don Priess (01:07):
Why?
Susie Singer Carter (01:08):
She's smart. Super, very smart. Yeah.
Wait. She's so smart. You guys,get ready. She's smart, she's
Lovely.
Don Priess (01:18):
so what's happening?
Susie Singer Carter (01:19):
Ummm, I had my flu shot yesterday. So any,
any kinds of mistakes or fauxpas or, you know, bad, paler?
I'm blaming on the flu shotbecause I have an excuse.
Don Priess (01:32):
Right. You've had a crazy week, haven't you?
Susie Singer Carter (01:35):
Yes, I have my daughter made a new human, a
human being, a little human nameGeorgia. Lovey. And Lovey was my
mom's nickname growing up andall through her adulthood. And
my my daughter honored her withthat name. So we have a little a
little Georgie, in our familyand she looks exactly like my
(01:57):
daughter when she was born. Andshe weighed this exact same
weight and the end she measuredthe exact same length. And may I
add that she is olive tone withbrown hair. Just like my mom, I
just saying.
Don Priess (02:13):
You are just saying.
Susie Singer Carter (02:14):
I'm just saying so yeah, it has been a
year of losses and gains a ndand such as life. But, yeah,
here we are,
Don Priess (02:24):
I would get I would get very trite and say the
circle of life but I will not dothat.
Susie Singer Carter (02:31):
(Sings Lion KIng) Where's my Yorkie? he's
always good for that.
Don Priess (02:36):
I don't think we have the budget for the songs.
Susie Singer Carter (02:39):
So, Don, I've never been in a community
like this that's so soenriching. I feel like I'm
learning all the time. And I'mI'm feeling heard all the time.
It just makes you feel good. Andthis this guest in particular,
her perspective on this disease,Alzheimer's and dementia and the
(03:00):
journey and the loss is somirror to what the way I feel
it's so validating to hearsomebody else have that
perspective. Who's already gonethrough what I'm going through
right now. I can't wait to sharethat with everybody. So why
don't you introduce our veryamazing guest?
Don Priess (03:19):
Absolutely. Our amazing guest today is Professor
Cindy Weinstein, and she iscurrently the Ely and Edith
Broad, professor of English atthe California Institute of
Technology. Since 1989. She hashad several administrative roles
at Caltech, including ViceProvost and chief diversity
officer in 2018 and 19. She wasan Atlantic fellow in the global
(03:41):
brain health institute based atUCSF and Trinity College Dublin,
where she studied neurology withan interdisciplinary group of
scientists, artists, socialscientists, and physicians. She
has published three monographson American literature, taught
classes on Herman Melville,Edgar Allan Poe, women's fiction
and African American literature.
But most recently, she hasshared her personal stories and
(04:04):
professional expertise, and ahumorous yet poignant memoir,
Finding the Right Words, areflection upon her father's
experience with early onsetAlzheimer's, in conversation
with a distinguishedneurologist, Dr. Bruce Miller.
It's a truly intimate andilluminating work that ventures
to explain how this diseaseattacks the brain. And we are so
looking forward to learningmore, so let us not wait any
(04:27):
longer. Please. Welcome and sayhello to Professor Cindy
Weinstein. Hello, Cindy.
Susie Singer Carter (04:36):
Hi, Cindy.
It's so great to have you here.
What an honor to have you it'swhat a brilliant mind and what a
big heart you have.
Cindy Weinstein (04:45):
Thank you. I feel very much the same way. I
your podcast is extraordinary.
The way it combines informationand emotion and humor. It's just
a beautiful thing you're giving
Susie Singer Carter (04:59):
Awww, thank you. Well, thank you for
to the community.
this, too. This great book thatI'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 goodinformation in it. And being
able to use the literature asmetaphor. And using that as a
tool, we forget how powerfulmetaphors are, I use it as a
(05:22):
filmmaker all the time. I reallyhighly recommend this book, you
guys, I really do finding theright words, it's really good.
And if you've been through thisjourney, there's so much in it
that will will resonate withyou, and, and also enlighten you
as to what you and your personwere going through at each
(05:45):
stage. It's brilliant. It's abrilliant, it's a brilliant
concept. So yes, yes. So I wantto dive in so bad. There's so
much I want to say I'veearmarked some things from your
book that I want to talk about.
But why don't you share yourstory of your father who had
early onset Alzheimer's and giveus just a brief background on on
that because I everyone'severyone's origin story is a
(06:07):
little different.
Cindy Weinstein (06:09):
Sure. My father was diagnosed with Alzheimer's
in the 80s. I was in graduateschool at Berkeley from 1982 to
89. And a few years in, I wasrealizing that something was
(06:31):
wrong with my dad. In the book,the first chapter is diagnosis.
And I uncovered the fact that Isort of knew something was
wrong, Before we officially gotthe diagnosis. And I noticed in
particular, a word findingdifficulty and the conversations
(06:54):
that I used to have with my dad,I was very, very close to him.
They became monosyllabic, my dadwould just give my mom the
phone, they were in Florida atthe time. And the communication
was not what it used to be. AndI also noticed that in those
(07:15):
days, when you wrote letters topeople or type letters, my dad's
typing was full of typos. Andhis handwriting was even worse
than it used to be writing nevera very good handwriting to begin
with. And my parents would visitme in Berkeley. And the origin
(07:36):
story for the book, really was atrip to the supermarket in
Berkeley. And my father wantedsomething in the salad for
dinner, and didn't know the wordfor it. And it turned out what
he wanted was Krypton. And Idescribe in a chapter on word
(08:01):
finding, just sort of the horrorof seeing the disease expressed
in that way. And thesynchronicity of my father
losing words while I wasbecoming an English professor.
And gaining expertise in burrowswas something I had been chewing
(08:24):
on for decades, and knew that Ineeded to come to terms with it
in some way. And that was thefirst part of the book that I
wrote the story about, trying tohelp my dad get to a word.
Susie Singer Carter (08:40):
It's interesting, because we all lose
words, right? I do it all thetime. And of course, with my mom
having Alzheimer's, I panic eachand every time. And so, you
know, it's it's a really, isthere anything that you could
enlighten anybody listening?
That might be also ya know,searching for a word? And I know
sometimes it comes from beingtired or overworked or not
(09:03):
sleeping enough, and, and welose words, Don, and I do it all
the time. When is it a problem?
When should we worry about it?
Cindy Weinstein (09:12):
I studied neurology for a year. And as I
told my friends, that can be adangerous thing. So to answer
your question, I really, Ireally have difficulty answering
that question. I guess. Thereare different problems people
have with words. And I rememberBruce explaining to me there's
(09:34):
the version where the word isjust gone. There's the version
where you have the dictionary inyour brain, but you can't get to
the right page. There's aversion where, like,
biologically you can't see theword that there is something
happening. aphasia. Exactlyright. So I'm going to answer a
(09:58):
slightly different questionandAnd if that's okay,
Susie Singer Carter (10:01):
Oh, sure, sure. Yeah. And I just can I
just say that but when an objectand just say that, I hear what
you're saying, and and I noticedthat. And I think that even with
my mom at the end stage, whenshe was had lost her ability to
speak, other than she said, Ilove you to me, loud and clear.
(10:22):
I saw her searching for thewords, I saw her look to the
right. Try to try to think ofsomething and then come back to
me and it was gone. And I knowit was gone. Because I'd say to
her, I see you, I see youlooking for those words. You got
words for me, don't you and shewould just squeeze my hand I go,
you know, so I knew that. It'salmost like the second thing
(10:45):
that you had mentioned, youknow, like, the word is there.
She just can't, she can'tconnect it. And when she said, I
love you, I said to her. Holyshit. That was a huge thing you
just did for her to pull thosewords together, and actually get
them out of her mouth was agift. So I do I hear you loud
(11:06):
and clear.
Cindy Weinstein (11:07):
I'm so glad we got that. And I would just say
that. One of the ironies ofreading the book and looking
back on it is me realizing thatwords are important, and I love
them, but they're not allthey're cracked up to be. Um, so
even though my father couldn'tsay I love you, I knew it. It
(11:29):
didn't matter. And that's beenan interesting thing to get to,
after writing this book, whichis, you know, a letter to how
much I love my dad, how much Ilove literature, how much I love
language, to realize thelimitations of that. But what I
(11:50):
was gonna say as I read thisbook 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 aword, and oh, my God, what's
happening to me. And what Ireally liked about one of the
chapters she wrote about waslike, it's okay to use
technology. Like, sometimesinstead of like going into a
(12:15):
tailspin, especially if you havea 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! thankyou so much. Love you love it.
It's the best. Yeah, no, you'reabsolutely right. You're
absolutely right.
Cindy Weinstein (12:36):
Because you're still tests that you might fail,
because that's just gonna, thatdoesn'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 thestress you're under, think about
Don Priess (12:46):
Just because you're you've lost the you know, some
the cortisol that's runningthrough your coursing through
of that skill. You know, I thinkyou have to look at other
behaviors before you startsaying, 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 aregoing on. And I think you have
You know, it's like when yousend it like sometimes when you
to combine that before you startsaying, Oh, my God, I have
Alzheimer's, right? Because Ican't think of a word.
(13:07):
sit in a room and go, Why am Ihere? Why was I going over here?
It's because you're thinkingabout something else? Right? So
yeah, we shouldn't panicimmediately when those things
(13:29):
start happening, you have tolook 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 youneed a CPAP. Or you're not
hearing as well as you need to.
And so think about gettinghearing aids. And now with the
new law that was passed that youcan get hearing aids over the
counter. Yes. Huge.
Susie Singer Carter (13:57):
Amazing.
Yeah. Can I say something toyou, Cindy, just in terms of
like, your dad, you know, hesaid, I love you all the time.
You don't really have to, and Isay this to people and I want to
just say it to us that you onlyhave to look at a baby to know
when a baby loves you withoutwords. Right? Well before they
can talk well before they canthey know any word and you know
(14:19):
whether they love you or whetherthey're afraid of you or whether
they're nervous, or you can youcan read so much without words.
You can do that with pets. Youknow, we don't have words with
pets, but we can look at them inthe eye. And they know and we
know what they know. So, rightand so there's so much to be
(14:40):
said about you know, justnonverbal communication is
powerful. Words are beautifulwords 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. Youknow, That's just the words are
you know, we are we have moregoing on up here that that
allows us to communicate withoutwithout actually hearing them.
So yeah, I think words areoverrated is is right on.
Susie Singer Carter (15:14):
I feel like this is such an obvious
question. But what led you towriting Finding the Right Words?
Cindy Weinstein (15:20):
I wanted to write the story of my father,
and how much I loved thisperson. And it took me a really
long time to figure out how Iwas going to tell that story.
(15:40):
There are, as you know, manymemoirs about dementia about
Alzheimer's. And I wanted thebook I wrote, not only to tell
the story of my grief and thestory of my father's illness,
and in the last chapter, thestory, the funny stories,
(16:04):
everything I just adored aboutmy dad, and we can talk about
how I kind of recovered thosememories. But I also wanted to
use the book as a way to helpreaders. And I think because
I've been at Caltech for solong, I wanted the voice of
(16:25):
science of a doctor, I wanted togive the readers information
about dementia in a way that wasreader friendly. And I wanted
images in the book, so that whena family goes to the primary
(16:46):
care physician or theneurologist, it wouldn't be the
first time they would see a pet,or they would hear the word
periatal lobe, or they wouldhear the word primary
progressive aphasia. I almostwanted to arm the reader with
language, because it's so scary,you know, usually going into the
(17:07):
doctor's office, and much of thepower is on one side. Although I
have some ideas about how tolevel that out a little bit. And
so it took me a while to findBruce I initially wanted, I
thought maybe I could work withsomeone at Caltech, we don't
really do very much work ondementia. We're starting to do
(17:29):
research on Parkinson's, butless on Alzheimer's,
Frontotemporal dementia, Lewybody. 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. Andthen I found someone at Santa
(17:50):
Barbara. And he really liked theidea. But the scientists are
constantly traveling every timeI had a conversation with him,
it was an it was in an airportbecause 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 ourindustry.
Cindy Weinstein (18:07):
There ya go, yeah! And then that person sent
me to Bruce Miller, and I sentan email to Bruce, I told him my
idea, and met with him, we'vereally hit it off. And he said
to me the magic words, do youwant to learn some science? And
I said, Yes, I do. Because I hadworked so long, Susie, with what
(18:31):
you were saying sort ofliterature's a metaphor for
grief and sadness. But I knew Ineeded another language to tell
the story of my father'sillness, and also to make sense
of my relation to it. And I hada feeling that if I learned some
neurology and worked with aresearcher, I would be able to
(18:56):
do what I needed to do to tellthe story.
Susie Singer Carter (18:58):
It's so smart, and it's so beautiful.
And it's so novel, bVernuecauseI 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 thiswonderful avuncular kind of guy
who, who's like, yeah, Want tolearn some science, it's like,
(19:18):
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 somuch, that he's just, you know,
bringing you into his world. Letme tell you why that's
happening. And that's such agreat thing, because it's it,
you know, it makes it accessiblefor 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 thebrain 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 ingeneral. You know, that I, I
always say that there's, youknow, there's the science and
there's the data. And thenthere's the individual. And
there's something magical aboutthe individual that can trump
the data sometimes. And that'swhy we have to be we need to be
(20:13):
informed on in all areas. Sothat we can say, okay, there's
the data, but who's this personwe'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 adifferent direction than say
that person. Right? Right. AndI, I love that because it
doesn't throw us all into thesame box,
Cindy Weinstein (20:38):
Right. A couple of things I just to respond to
that I wanted to giveinformation via Bruce, to
educate people about the scienceand also about the grief process
and what it might look like. Thething is that a lot of people
can't get to UCSF. And there arepeople in rural communities,
(21:03):
there are underrepresentedpopulations that have difficulty
getting into these clinicaltrials. And there are a lot of
researchers who were workingvery hard on diversity, equity
and inclusion with respect tothese trials. And I wanted to be
able to give people access toBruce, through this book and to
(21:26):
his expertise. And the programthat I was in is called the
global brain health initiativeis devoted in large part to
access around the world. And sothe program that I was in,
people were from Botswana,Jamaica, through Brazil, it was
(21:48):
extraordinary.
Susie Singer Carter (21:49):
Wow, it makes me feel so happy that
there's that much interest allover. Well, there's so many
people that at least in mycircle, that don't want to look
at this, don't care to look atit. And you know, there's a lot
of lalalala going on. I'm guiltyof 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, youknow, I'll I'll close my eyes.
And if I don't see it, it's notthere.
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 andembodied 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
(22:50):
with that story was justextraordinary. Her connection?
Cindy Weinstein (22:56):
Yeah, you could tel. Yeah, what I loved also
about the movie, it reallyconfirmed, something that Bruce
talks about with dementia. Andthat is when certain parts of
the brain aren't working, aswell as they might, other parts
(23:16):
light up. And so he has atheory, and I think has data to
support it, that the empathycircuitry in Alzheimer's gets
really activated even more inthe absence of language and
(23:39):
other parts of the disease. Andso the moment in the film, where
your mom played by Valerie istalking to the trans person. And
that just blew my mind that wasjust just magnificent. Just to
see the ability, her ability to,even in her illness to make
(24:04):
someone feel so good and sowhole 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 caregiverhas 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
(24:33):
certain time period. Yeah. Thatresonated 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 werelike, is anyone going to relate
to any of this? It's sopersonal. And you realize and I
think you probably realize thiswith your book. There's so much
shared experience, even thoughit's a completely unique moment,
the experience itself is ashared experience. And that's
(25:08):
why it's so interesting when youwhen 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 ourfilm 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 sogreat. You know, it would be
great. But you know, so wetalked about the structure of
your book, which I love yourstructure of it. I love the
stories that that touch ourhearts that make us laugh that
make us cry, you know, and yourlove for your father is so
palpable. But I need to ask whyMoby Dick was such a huge part
(26:00):
of this narrative. And why isthat, 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 MobyDick for the first time when I
was 16. And I was the kind ofstudent like if the teacher
said, of this is like thehardest book, like, don't, don't
work on this, because you'llnever understand it. Like,
(26:30):
that's the thing that I wantedto figure out. So I read it in
high school for the first time.
And then I read it again incollege twice. And I think part
of it, there's a lot going intoit. But one of the things has to
do with the people, I wasreading it with my teachers, I
loved my teachers, and theypushed me to understand this
(26:56):
really complicated book. Andthen when my dad got sick, they
weighed in on how I might wantto think about pursuing my
career or putting my career onhold. Still, the novel itself.
(27:16):
is, is important to me, bothbecause I love the book, and
I'll talk about that in aminute, but also in relation to
where I was at particular timesin my life when I was reading
it. So there's that. And what Ialso discovered is with each
(27:40):
rereading, I would get somethingnew out of the book. My favorite
thing to do with my students isjust to take a paragraph or two
and walk them through how Melvilgets from point A to point B,
how he enacts Ralph WaldoEmerson's transcendental ideas
(28:02):
in the novel, just, the languageis just gorgeous. So I love
talking to my students aboutthat. It's a really funny book.
And I love bringing out thehumor with my students. Because
I think there's a there's a waythat people are sort of
frightened of the book. And it'sreally fun to work with students
(28:27):
to get them to sort of take thenovel off of its pedestal. But
the main thing is the story ofIshmael and Ahab, and I can kind
of over the years, I was able totake my emotional temperature,
based on which character I wasidentifying with. And Ishmael is
(28:50):
really funny, and very processoriented. And he doesn't really
care if he gets to a conclusionor not, the fun of it for him,
is just trying to figure it outand writing about it, whereas
(29:11):
Ahab thinks he's got it allfigured out. And he's full of
anger and fear, and authority.
And when I've identified withAhab's pain, too much, and this
(29:32):
was really the case when myfather was first diagnosed, like
I understood Ahab in a way thatI wish I had never been able to
understand, like wanting to getout in the world and destroy
something that represented thething that was causing me so
(29:53):
much pain. Wow. And when I wasfeeling better I was able to
embrace ish males position. Andso it's just been a kind of
guideposts for me throughout mylife and one of my favorite
chapters in the novel is Ishmaeldescribes the ability of the
(30:17):
whale, its eyes are placed oneither side of the head, and
that the whale can hold twocompletely different pictures in
its mind at one time. And Ithink that that is something I
have aspired to, as I've come toterms with my father's illness,
(30:42):
the ability to see that terriblethings that really sad things
are really painful things whichI confronted in finding the
right words. But then also, thewonderful things together.
Susie Singer Carter (30:57):
Yes, the gifts that when what Bruce said,
and I stayed in my rudimentaryways that you know, when, when
some as some skills leave,others are replaced by other
things that are that arestronger and more and more
potent, and they are the gifts,right? They are the gifts like
(31:19):
you like the empathy that thatgets pumped. You know, it's
interesting, because I haveshied away from classics,
because of just what you said Iwas, so want to take your class
now. I do. I mean, I just, Ijust started reading Crime and
Punishment for the first timebecause it scared the hell out
of me. And I thought, I need toread something that's, you know,
(31:43):
scary. And because I need totest myself and challenging
myself, and I'm not sure I likeit. I'm halfway through, I'm not
sure it was the best firstchoice of that kind of
literature, but I'm still tryingto wrap my head around the
(32:04):
characters, and they're, they'renot very likable. And I'm trying
to find the what know that takeaway?
Don Priess (32:14):
Yeah, you know, I was just gonna say that, you
know, you just said that you'vethat literature to help you
understand your, your father'ssuffering, your own pain. But
you've also said that it allowsyou to deny what was happening,
how does that work?
Cindy Weinstein (32:27):
It was complicated. I think that. And
this is such an Englishprofessor thing to say, like it
did both. It allowed me to pourmy energy into understanding
other people's pain, becauseliterature is often about grief
(32:52):
and about pain. And so I wouldbe reading, I don't know,
Lolita, an American tragedy byDreiser. And just the act of
moving my attention away from mydad, and what was happening with
him to something else was sortof a way for me to kind of
(33:18):
temporarily deny or put to theside what was going on with my
father. At the same time, as thebooks, I was most attracted to
Moby Dick being probably numberone. There was like a, it was
like the door was ajar in thenovel, to let me in just very
(33:42):
small doses. Think about whatwas happening with my dad. So it
was a funny combination of, Idon't need to think about what's
happening, I can roll my, mybrain into this other endeavor,
(34:04):
at the same time, as it was awindow 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 theway it's when you say you know
that you're denying what'shappening, I think you're just
distracting from what'shappening. I think that's
healthy. Sometimes you bring youneed 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 thingby throwing myself into this
(34:34):
documentary. I don't do you haveyour 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 aproduction here. I would love
you to read at the bottom ofpage 102. Because you shared
this passage online which hadme. You're like my sister
because of this and I felt likeeverything you wrote was my
experience and by the way, sheactually uses hairball as a
(35:03):
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 mygirl. Okay, we get each other.
Thank you. Would you would youmind reading that and and
because I think it's it reallyilluminates probably what a lot
(35:27):
of us go through that are havelost loves of our lives.
Cindy Weinstein (35:34):
But back to the part where I forgot my father
was dying. A cognitive maneuverthat even decades later leaves
me reeling in its utterstrangeness. Perhaps this
forgetting is the verydefinition of denial, self
protection and self immolationall rolled up into one psychic
hairball. Anyway, here's what Ithink happened. I had become so
(35:58):
used to visiting him in nursinghomes over the decade or so that
felt like a lifetime. that atsome point, I think I convinced
myself that this was the waythings were going to be. We're
always going to be, this waslife. Looking back, I now now
realize it was also death. I'mpretty sure I never thought
about how my father would die.
Maybe some people do. But Isomehow knew how he wouldn't.
(36:20):
The start date certainly wasn'tsometime during his 50s. And the
end date wasn't 70. And becausethe way he was dying wasn't the
way he was supposed to, eventhough exactly how he was
supposed to remained unansweredand unposed question, I refuse
to acknowledge fully what washappening, I say fully because
(36:40):
on the margins of consciousness,I knew, but I could only know
for a second or two and then theknowing how to stop, therefore,
to use a word that denoteslogic, even though the thought
process I am describing seemscrazy. As he was getting older,
I managed to lose track of thepassage of time, his sickness
froze me, froze him in time andparalyze me. Oddly, I could
(37:03):
still do my academic work. Infact, I thrived. The paralysis
was loose, localized, but itwent to the deepest part of me.
So even as his death washappening, I didn't know it.
Grasp it grieve, it turns out,I've given myself an anesthetic
that has taken about 30 years towear off.
Susie Singer Carter (37:23):
Wow. So that's it in a nutshell, for me
as well. I think that's whatthis disease does, is that it,
it, It's so intense. And there'sso much to it, and it's so very
long for a lot of people that,that you can easily forget that
(37:46):
your person is dying.
Cindy Weinstein (37:50):
It's so weird, because, as Don said,
Alzheimer's is many things. It'snot just for finding it's not
just memory, although I thoughtit was just memory when I
started at UCSF, but the strangething, at least for me, and
(38:11):
Susie, I don't know if this isthe case for you, is I started
forgetting, like my memory wasaffected by what was happening.
And that sort of mirroringrelationship was another thing I
wanted to kind of sort throughin the book as much as I could,
(38:33):
that for example, my fatherwould have difficulty in space.
So I have a chapter on spatialdisorientation. And I thought
Berkeley was my space my homebut I was completely disoriented
when I was there. So just thatas I said mirroring kind of
(38:55):
thing Susie, I don't know if youhave that experience
Susie Singer Carter (38:58):
I have...
What's odd is like I'm think asyou're saying that I'm thinking
about my the consistent theme ofmy dreams is always me trying to
find out where I'm at and figureout where I am all the time.
When and I share that with Johnall the time I'm somewhere I
can't figure out where to go howstrange house it's usually a
(39:18):
strange, strange building abuilding that I'm working at.
You know, I'm it's some hugevenue that I met and for some
reason, I cannot find my wayback. It's been at universities
like it'll be the UCLA but it'snot UCLA and I'm, I'm trying to
find the entrance and the exitand I can't, I can't figure out
(39:41):
the space. So it's interestingthat you said and it's
reoccurring all the time. I haveI 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 thehome and being in her wheelchair
for so long. And you know, thatstage just felt like it was
never going to change. And Ijust I never thought about how
was she going to die? I neverthought that. I just kept
thinking, how are we going tomake everything as comfy and as
(40:14):
lovely and as wonderful aspossible?
Cindy Weinstein (40:17):
Right?
Don Priess (40:18):
What would be the hardest chapter you had to
write? And why was it sodifficult?
Cindy Weinstein (40:24):
The behavior chapter was the hardest part to
write. And the passage that Ijust read is from that. And
there were a couple of reasonsthat was so hard. Each chapter
in its own way, was very, verydifficult. It's funny, because I
think,for Bruce, the behaviorchapter is probably the easiest
(40:45):
one, because his area ofexpertise is Frontotemporal
dementia, which is quitebehavioral in terms of how it
presents. And so, I had toldeach chapter, Bruce was great,
because like, I would tell him astory. And he would say, okay,
(41:07):
Cindy, that's chapter eight,right about that. And I could
give some other examples of it.
But the one in the behaviorchapter, I remember, my father
pulled a sink out of the wall,in his nursing home. And Bruce
was like, You need to talk aboutthat. And so that behavior
(41:28):
chapter was, I think, especiallyhard to write, because all of
the most of the behaviors Iwrite about were ones that I
learned about, in a second handfashion. And still revisiting
memories of that also remindedme as if I needed a reminder
(41:54):
that unlike you, Susie, I wasreally far away from my dad,
when he was suffering so much.
And a lot of the book is aboutthe guilt that comes along with
that decision to remain away andpursue one's dream. Even though
(42:20):
I knew that my mother and fathernever would have wanted me to
give up that dream, and move toFlorida and help take care of
him. That's not what they wantit. But you're damned if you do,
you're damned if you don't.
Right. So the behavior chapterwas especially hard because I
had to continually re confrontthe decision I had made stay
(42:43):
away. And also, the behaviorthat I wanted to get out that I
wanted to write was a verypainful 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. AndI think there there's some
research about dementia andbruxism. And whether it's part
of the disease or a reaction tothe medication. That's always
(43:23):
like, a big question. And Susie,I know you talk about that. But
my dad made this sound, whichwasn't words. And I wanted to
get back to that sound, andconfront it and hear it fully,
(43:46):
which moves, emptying my mind ofa lot of the other noise that I
had packed into my mind. So whenI hear that sound. And that was
very important for me to write,because that that was probably
maybe the hardest memory was thesound. And the image I have of
(44:09):
my father making it, but it wasalmost like a breakthrough.
Because once I heard it, I feellike I had confronted, like,
maybe the deepest demon. Andthen I was able to write the
chapter on memory, which was aremembrance of my father before
he started making that terriblesound.
Unknown (44:31):
Wow. Isn't it Arthur Miller? This is one of my
favorite passages when he talksabout 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'resaying? It's he says, You know,
sometimes the I'm going tobastardize him so sorry, Mr.
Miller, but it's it's, you know,sometimes the house smells of
baked bread and the other timesit smells like burning flesh.
And and when it does I turn in,there's this just pickable,
(45:06):
ugly, horrible child chasingafter 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 lookat this child because he's so
disgusting looking. And he said,And finally, ultimately,
finally, one day, I just turnedand embrace that child. And I
realized that that idiot childwas me. x
Cindy Weinstein (45:26):
Right. Yep, that's yeah, I just have to say
that. It's very gratifying thatthe story that I tell is
resonating, it makes me sad thatit resonates because I know what
that means in terms of people'spain. But I was always worried
(45:51):
that the story of a girl fromNew Jersey middle class Jewess,
you know, becomes an Englishprofessor 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 findthemselves in the story. And you
(46:12):
know, that me you're, like, theideal 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'tthink 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 LovesRaymond. And he always says, you
know, writing from what youknow, is the most powerful, and
then the way to reach the mostpeople is in the details, the
tiny little details that youthink that nobody's going to,
you know, like, you know, healways uses an example of like
(46:56):
at Christmas, he would give hisparents every year, or Hanukah,
every year, give her give themlike 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'twant this too much fruit. And
what we're gonna do with allthis fruit, it's a lot of fruit.
(47:17):
It's a lot of oranges everymonth. Phil don't do that. Ma?
Everybody loves share it withpeople." Anyway, he wrote that
into the, into one of theepisodes. And he said, III think
anybody else had that exact samething? No. But everybody gets
it, because it's so real. Andit's the details of it. And I
think that's the power that wehave as storytellers, whether
(47:39):
we're, you know, authors orscreenwriters 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 doesresonate, 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. Andshe's like, You told our story.
We're like, what? How are we?
How did what you just saw tellyour story. And I'm sure and I'm
interested to see if you'vegotten 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 appreciatethat. And that feedback has
(48:50):
given me kind of raison d'êtreYes, sure. To do as much
outreach with the book as as Ican. And so reaching out to you,
Susie was an example of that,and doing podcasts, which I had
(49:12):
never done before. I'd neverbeen on social media before. We
had a publicist for the book,and she was great. And Johns
Hopkins has been terrific. Butthere was a limited amount of
time for sure, to publicity. Andso I've had a chance to talk
(49:36):
sometimes with Bruce sometimeswhen myself with caregivers, I
go to senior centers and talkabout dementia and the book,
medical humanities groups.
They're these things you mayhave heard of, they're called
Alzheimer's Disease ResearchCenters. They're about 32. In
the US, many of them haveoutreach programs, book clubs,
(49:57):
and so I've been working withthem to spread the word. And I
feel like my dad, I, at onepoint, I was like, we had a hard
time finding a publisher for thebook. So when both of you sort
of applaud the structure of it,I really appreciate that. But
(50:17):
there were many publishers thatdidn't want to take a chance on
it. Because it was too strange.
And how would it be described onAmazon? It's in the musculo,
musculoskeletal section onAmazon. 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 apublisher, I was like, I wrote
this thing. If it never getspublished, so be it. And then
various things happened. And wewere able to get the book with
Johns Hopkins, which wasfantastic. And I think my dad
(51:04):
would want his experience to beused to help others. So I keep
that in mind. When I get alittle worried. And Susie, I
don't know if you feel this wayabout telling your mom's story
was instrumentalizing. It Yes.
making it useful? Yes, in someway. 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 withexploiting people. I have a very
big problem with that. And I andthere'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. Iknow it when it's when it's when
it feels exploitative to me, Ifeel it and it hurts. I don't
like it at all. And I am andthere is a lot of that in the
community. Now. I didn't use tobe like that, but it's more and
more. And I yeah, I've beenvery, I was very fearful of
(52:05):
doing that and abusing mymother's condition as as you
know, as a tool. But when shewas when I was doing I was
fearful of using my mom'scondition as as you know, as a
(52:34):
vehicle. And but when when Iwhen 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, Imade a movie about you. And she
said, I said, Do you rememberRhoda 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 Itell her all the time, how many
(52:58):
people were falling in love withher and that she was so powerful
with her story. And I know thatshe 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'sthat that's my that's my
barometer is I wouldn't want todo anything that she would be
(53:21):
ashamed of. Even with mydocumentary coming up, I'm
fearful. But I feel like what'sgoing 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 twohours 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 savoringit. 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 wanteveryone to get it. If you're
not a reader, it's so easy toread. It's just it's just super,
(54:09):
you know, Bruce is terrific theway that he describes what is
going on. And I think that youknow, what's so beautiful is
marrying those two perspectives.
I think you did an extraordinaryjob. And I applaud you, and I
love you. And I think that youknow, and I want you to I want
you to not to feel guilty aboutbecause you're you're right,
(54:30):
your dad wouldn't have wantedyou to leave school. And my
mother like she says in themovie. 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 feltthe same way. So you did you did
him good. You did him proud. Andyou were there at the important
time. Okay, and so and so as i iYou know, I wasn't too
Helicopter daughter. And eventhough we live in the same city,
(55:03):
I saw my mom once a week becauseI felt satisfied. But once I
realized I was mistaken, youknow, in terms of her care,
that's when I decided I had tobe there almost every day. But
that's that was my decision. Iand I gave into it because I
knew I for me, not for my momfor me and her but I mean,
that's what I needed to bethere. And so, and I and I made
(55:27):
a conscious decision. And andthat's, and I don't regret it.
But I also don't regret havingto put her in the home because I
had to. There was nothing that Icouldn't do it on my own. And
that's the problem with ourhealth 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 yourdaddy 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 thesporty dad and he is he's I have
a crush on him. I don't know.
He's a good like, he's a goodlooking guy. I would have dated
him.He was a cutie. Super cutiepie.
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 goodto go?.
Cindy Weinstein (56:17):
Perfect.
Don Priess (56:17):
Excellent.
Susie Singer Carter (56:18):
Great.
Well, it's apropos that youloved 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 ConquersAlz. So we thank everyone for
for watching today. Please buyCindy's book. We will. We'll put
up all the information. And youknow, we'll see you next time.
Like, subscribe, do all thosefun 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.
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