September 24, 2025 • 67 mins
When Bruce Willis was diagnosed with frontotemporal dementia, Emma Heming Willis’s life changed overnight. In this intimate conversation, she tells Katie about the early whispers of the disease, why getting a diagnosis was both a blessing and a curse, and how she’s helping their two young daughters navigate this “long goodbye.” Emma opens up about the guilt of taking a family trip without Bruce, the stigma caregivers face when making impossible decisions, and why she believes asking for help is a sign of strength, not weakness. Along the way, she shares lessons from her new book The Unexpected Journey—practical tools, expert insights, and the emotional wisdom she wishes she’d had in the early days.
See omnystudio.com/listener for privacy information.
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:02):
In this world where I feel like we're also just disconnected.
There is something so beautiful about this connection that I
am getting from other care partners that are going through this.
It is deep, it is meaningful. I don't have to
have these long drawn out conversations with them. We can
see each other, We hold hands, we hug, we cry together.
(00:23):
I mean, there is such beauty in that in a
world that just feels so discombobulated.
Speaker 2 (00:31):
Hi. Everyone, I'm Katie Couric, and this is next question.
Emma Hemi Willis and I met a few years ago,
and I was immediately struck by her grace and intelligence.
She somehow exuded calmness and serenity, but I also knew
that every day she was probably feeling like her heart
was in a vice because she's had to witness the
(00:53):
heartbreaking decline of her husband, Bruce Willis from Front Door
temporal Dementia. Becomes such an important voice from millions of
caregivers all around the world, bravely sharing her family's experience,
and now she's written a book that will make so
many people like her feel less alone, called The Unexpected Journey,
(01:14):
Finding Strength, Hope, and Yourself on the Caregiving Path. Emma
invites us into the realities of FTD, the early signs,
the ambiguous loss, and the toll caregiving takes, and she
offers practical ways to build community, protect your own health,
and keep love at the center. It's candid, compassionate, and
(01:35):
full of hard won wisdom. Emma, So good to see you.
Thank you so much for coming in and talking to
me about your book.
Speaker 1 (01:44):
Thank you so much, thank you for having me.
Speaker 2 (01:46):
I'm really happy to see you again. You know, we,
as I said, got to know each other a little
bit a couple of years ago, and last October we
spoke at a town and country summit all about caregiving,
and in that conversation you said to me, I'm trying
to find that balance between the grief and the sadness
(02:07):
that I feel, which can just crack open at any
given moment, and finding joy. I say that FTD whispers,
it doesn't shout. It's hard for me to say. This
is where Bruce ended, and this is where his disease
started to take over. Bruce was diagnosed in twenty twenty two,
(02:27):
you said, but a year prior, we had a loose
diagnosis of aphasia, which is a symptom of a disease,
but is not the disease. So here we are nearly
a year later, and I'm wondering how things have shifted
or changed for you since we had that conversation.
Speaker 1 (02:48):
Well you just reading that, I'm like, yeah, that tracks
all of that, you know, I think that over time, Well,
I think where I am today, I'm finding I'm a
little more. I think I'm again learning how to walk
with grief, but really being open to find moments of
(03:09):
joy like that is really starting to come in. I
realized that it's okay for me to find joy, find laughter,
you know, find light that by me not it's not
going to make Bruce any better or any worse. So
I think that I'm just I feel I have a
(03:30):
little more footing today than probably a year ago.
Speaker 2 (03:35):
It's a process, and you've adjusted to this new normal.
And as things have progressed for Bruce, I guess every
stage requires a bit of an adjustment period, right.
Speaker 1 (03:49):
Yeah, I mean I've definitely adjusted. And I remember where
I started and I could never even imagine that I
would find my footing, And I do kind of wish
someone would have told me that in those early days,
Like I know, this feels so terrible. But over time,
like you will find your footing, you will learn how
(04:12):
to make this your new normal. But I didn't know
that in those early days, and maybe I just wasn't
probably even ready to hear that. But you know, with
this disease, it is a progressive disease, and you know
there's peaks and plateaus, and right now we're in a
really good position. But I know that the next shoe
(04:34):
will drop because it's inevitable, because this is a progressive disease.
So you know, you're kind of always a little bit
on edge, a little bit on pins and needles, thinking
like what next. But what I know is that I
know when the next shoe drops, I'm going to be
there to pick it up.
Speaker 2 (04:53):
Is that because you have really educated yourself about this disease,
you have prepared yourself for the future.
Speaker 1 (05:05):
What I have learned from one of the you know
specialists in my book, TIPA Snow, She says knowledge is
the greatest stress reducer. And I think me becoming really
educated and knowledgeable about what this disease is and isn't
and how it presents and you know, what are things
to look for, has really helped kind of settle. I
(05:28):
had had this siren going off in my head next
to my ear all the time. But I think it's
really helped the knowledge, The education is really settled, silenced,
not silenced, it's the volume has been turned down.
Speaker 2 (05:42):
You know. That's so interesting when I hear you say that,
because when my husband was sick, you know, that's the
last thing I wanted was knowledge, because everything I read
was so devastating. And I think that's somehow I pushed
all that away and placed it with hope. And it
(06:04):
is sort of this strange mixture, right of magical thinking
denial in some ways, at least early on, and of
course Jay was only six for nine months, and you
know it was much a much faster progression, a much
different disease, right, But I eschewed any information about stage
(06:29):
four Colling cancer because I thought, well, if we can
just manage it, if we can just wait, and something's
going to come up and a new treatment is going
to surface. And did you find yourself engaged in that
kind of magical thinking for a while?
Speaker 1 (06:46):
Definitely early on before we had a diagnosis, right, I
wanted to try and figure out fix, you know, see
what was happening, how can we do this? You know
what treatments are there? How can we did all the
things I did, all the things, I turned over every
stone because I had hope. I really felt like there
(07:07):
was going to be something out there that was going
to fix whatever this ambiguous thing was that we were
dealing with.
Speaker 2 (07:14):
Right, And if you're a can't do person, am I
think you say, Okay, how do we fix this? What's
the solution? We're going to come up with something? And
I think that feeling of powerlessness is so devastating and
something that is really hard to accept.
Speaker 1 (07:34):
I think for us, what was important for me was
getting to that diagnosis and understanding what it was that
we were dealing with, and understanding that there is no
treatment and there is no cure, and to then really
be able to sync into not this magical thinking, but like, Okay,
(07:56):
this is what's been presented. Now I just need to
ground myself in this and see how can I best
support Bruce, our two young daughters, and our family and
myself through this.
Speaker 2 (08:08):
It must have been crushing, and yet having a diagnosis
did it give you any kind of relief? Just knowing
what was going on?
Speaker 1 (08:19):
One hundred percent? You know, it was like the blessing
of the curse. It was a relief to finally be
able to put a name on what it was so
that I could then really understand what this disease is
and also be able to separate my husband from his
disease because you know, for so long it was you know,
(08:40):
you think that someone is making these personal choices. You know,
dementia's is interesting before you come to a diagnosis and
you think that what they're doing, what they're saying, is
a personal choice. But then you realize, oh, no, this
is actually a disease of the brain. His brain is
being dismantled, And then you know, you can have so
(09:00):
much more empathy, compassion, patience when you understand what the
disease is. So I think, yeah, getting to that diagnosis
was an important important for me to be able to
move forward and get out of the denial and what
(09:23):
you know, magical thinking of being able to turn this
thing around and really understanding what saventure is.
Speaker 2 (09:32):
When we had that conversation that I mentioned last October,
you said you were writing a book for caregivers, and
at the time you said, it's not just about how
to care for your loved ones, it's about how to
look after yourself in the process. So now you've written
this book, You've poured your heart and soul into it.
You've been traveling the country, you've been doing interviews, you've
(09:54):
been talking to people, and I'm really curious. I'm about
the reaction you've gotten from p people. I'm sure you've
heard from many, many people who are in similar situations,
because there are millions of people like you who are caregivers,
not only in this country, but really all around the world.
Speaker 1 (10:13):
I mean, there's sixty three million caregivers in the US,
eleven million of which you're caring for someone with dementia.
It's affecting so many people. It's everyone's story, right, Everyone
is affected by this. So, you know, being able to
like the mission, the purpose of that book was to
be able to support the next caregiver because caregivers are unseen,
(10:38):
they are unsupported, so many are doing this on their.
Speaker 2 (10:41):
Own, undervalued, undervalued.
Speaker 1 (10:44):
It's and what I knew was that with the experts
and the specialists, that I had to be able to
surround our family. You know, I was able to do
that because I have some time, I have some energy,
I have resources, and I have access and many don't.
Many caregivers don't. And what's happening in these doctor's office
(11:08):
is that you're getting a diagnosis. You know our stories
that we got the diagnosis and it was a you know,
a diagnosis and audios, you know that was it. Chuck
back in in a couple of months and you leave
with nothing. I left with a disease I couldn't pronounce,
I didn't understand it, and no support and I had
to dig into the internet to really understand what FTD
(11:32):
was and how do I support our family and what
will this look like over time? And being able then
to sort of come out with our family's statement to
then relax a little bit so that I could then
go out and actually talk to these specialists, bring them in.
I knew that the information that I was sitting on
(11:53):
was so valuable because it was helping me, it was
helping support our family, and I just knew there is
a gap out there, and I had this information and
I was able to put this in the book to
be able to give to another caregiver, just to be
able to be of service to someone else.
Speaker 2 (12:13):
What do you wish had happened that first hour when
you were told of Bruce's diagnosis. How do you think
medical folks could help patients more from the get go.
Speaker 1 (12:31):
Listen, what I know is that doctors only have a
finite amount of time to spend with their patient. But
what I wish would have happened was that, you know,
here is the diagnosis, this is what it is, and
then just to be able to provide the caregiver the
family with one piece of paper that has a couple
(12:54):
of you know, websites on there that can support the caregiver.
Because when you walk out with nothing and a check
back in, you know, that was a really traumatic doctor's appointment.
The fact that I had to do such deep therapy
around that because I couldn't even talk about that. You know,
I you walk out of that and you just your
(13:16):
whole world has just shifted drastically and you're leaving with nothing.
So I just think, you know, gosh, you know, if
they even if you would have just given me one resource, like, okay, well,
your husband's had been diagnosed with fronto temporal you know, dementia.
Here is an organization that would be your first resource.
(13:40):
Go on their website. It's the aft D, the Association
for a Fronto temporal degeneration, you.
Speaker 2 (13:46):
Know, just one or here's a support grew.
Speaker 1 (13:48):
Here's a support group that we offer at our institution, right,
you know, here is a social worker who is going
to now take you into another room to be able
to let you know these are some of the things
that you should think about or come back in a
couple of days when this is settled and we've got
you like we're gonna, we're there is support for you.
Speaker 2 (14:09):
And then of course you had to help Bruce process it,
which must have been even more challenging because you not
only had to process it yourself, but you had I
can't imagine how difficult that was, Emma, Listen.
Speaker 1 (14:27):
By the time we got a diagnosis, for most people
with FTD, they are well into their disease. So for Bruce,
and like for you know, a majority of FTD patients,
they don't realize, they don't grasp That's another blessing I
think in this It's like the one thing, one bit
(14:48):
of grace that FTD I think has given me and
our family is that Bruce never tapped into it. And
I'm grateful for that. I sure did.
Speaker 2 (14:59):
But along the way, did he ever kind of express
to you I'm having trouble or was it just a
slow erosion of his cognitive ability that just kind of
he accepted as it happened.
Speaker 1 (15:20):
I think that he didn't realize that it was happening.
Speaker 2 (15:22):
That is.
Speaker 1 (15:24):
How crazy this disease is. It just starts stripping away
your cognitive thinking as a whole, so.
Speaker 2 (15:37):
You can't even really understand what's happening.
Speaker 1 (15:41):
You can't understand what's happening.
Speaker 2 (15:42):
I know that you started talking about taking care of Bruce,
and I thought this was so brave of you, Emma,
on social media, you know, during and really talking about
it and helping other people. And I just wanted to
ask you because I don't think we covered it the
kind of feedback you get from other caregivers who have
(16:03):
followed your journey, who have now read your book, who feel,
as I said in the introduction, less alone because of you.
Can you talk about the feedback you've gotten from them
and so many others?
Speaker 1 (16:15):
I mean, it's definitely been so positive, right. I think
that being able to tell, you know, people what this
disease is, you know, it opened up the door to
other people within our community because no one knew what
FTD was. I mean when you get diagnosed with it.
Speaker 2 (16:35):
It's a rare disease and it's a subset of dementia.
Alzheimer's is the vast majority of that subset, but frontotemporal
dementia is another. That's right, there are many diseases. There's
that umbrella of dementia.
Speaker 1 (16:48):
Well, I've learned that there's about one hundred and twenty
different forms of dementia, so there's a lot. Right. We
do always think of Alzheimer's because that is the most common,
but there are plenty of other different dementia, you know,
I think think for other caregivers, there has been so
much I think just support and kindness and love, but really,
(17:11):
you know, we caregivers live in it in such isolation.
Myself included, you know, there was so much smoke and mirrors.
Wasn't able to connect with other people because I was
just so scared about you know, this getting out before
we were ready to talk about you.
Speaker 2 (17:25):
I had that added layer of Bruce Bean a public figure,
which is so much pressure, and I can relate to that.
Even though when my husband was sick, I was the
public figure, but I fiercely guarded his privacy too because
it was tabloid fodder, and it was awful.
Speaker 1 (17:43):
It's awful, and I knew it would get really bad,
and I just wanted again just to protect him and
just try and navigate this as quietly as possible. But
there just came a point where I realized, like, this
is silently killing me, not being able to talk to
(18:04):
anyone and just doing all of this thinking in my
head and worrying and what if thinking and catastrophizing everything.
And you know, the blessing has been to just go
the complete opposite of that, so that I can now,
you know, be in these rooms with other caregivers. It
(18:25):
doesn't matter who my husband is, you know, this caregiving
just like it levels the playing field. I get to
now connect with another caregiver who just gets it and
sees me and canvalidate me. And it goes both ways.
I mean, in this world where I feel like we're
also just disconnected, there is something so beautiful about this
(18:49):
connection that I am getting from other care partners that
are going through this. It is deep, it is meaningful.
I don't have to have these long drawn out conversations
with them. We can see each other, We hold hands,
we hug, we cry together. I mean, there is such
beauty in that in a world that just feels so discombobulated.
Speaker 2 (19:18):
Hi everyone, it's me Katiekuric. You know, lately, I've been
overwhelmed by the whole wellness industry, so much information out
there about flaxed pelvic floor serums and anti aging. So
I launched a newsletter It's called Body and Soul to
share expert approved advice for your physical and mental health.
(19:38):
And guess what, it's free. Just sign up at Katiecuric
dot com slash Body and Soul. That's k A T
I E C O U r C dot com slash
Body and Soul. I promise it will make you happier
and healthier. Your book is really kind of a how
(20:07):
to book in many ways. It's not really just your story,
it's your learnings. And you have line pages that invite
readers to write down their responses to questions like what's
one thing you can do to build more community and
connection for yourself? What are my barriers to exercising? I
(20:29):
feel like you're helping people make a plan and you're
not asking them to read between the lines of what
they can do. You're actually really kind of being a
guide for this journey. And I'm curious why you purposely
created the book this way.
Speaker 1 (20:48):
Because you know, I am very pragmatic, you know, I
like to have a plan. I like to know what
it is that I need to do. And I also
think like caregivers are so fatigued with trying to figure
everything out or trying to figure all the things all
the time. We're making decisions all the time, and I
(21:08):
just really wanted a book that just presented things to
the caregiver so that can just take the thinking away
from them so that they can now have these actionable,
tangible ideas that they can start to put into practice today,
you know, and you know, yes this is parts of
(21:30):
my story. But I think what is really powerful about
this book is the experts and the specialists lending their
voice to really tell the to give the caregiver permission,
you know, to tell the caregiver how.
Speaker 2 (21:44):
To what to do. And this isn't just for FTD.
I mean no, it can be relevant to any kind
of caregiver, right I think.
Speaker 1 (21:52):
So, I mean I wanted to stay in my lane
right like FTD is our journey. This is what I know.
The awareness piece I think is really important to you
in this day and age, but it is really for
anyone going through the dementia journey, or as you said,
just as a caregiver. I think that there are some
really valuable ideas, advice tips in there that can really
(22:17):
help someone else.
Speaker 2 (22:18):
Give us a quick primer if you could, Emma on FTD,
what you want people to know about this specific disease.
Speaker 1 (22:29):
Okay, so let me try. It is even me what
I'm like, wait, what is it is? It is difficult
to talk about. So FTD is frontal temporal degeneration. It
affects the front part, the frontal lobe and your temporal lobes.
And you know, your frontal lobe is like how we
show up in the world decision making, you know, how
(22:50):
we have empathy, sympathy, you know, just for others, and
our temporal lobes. That is communication, that is yet language,
being able to read comprehension, and it is different to Alzheimer's.
So when people people will always ask me like, oh,
you know, does Bruce know who you are? Does he
remember you? And I said, yeah, he does because he
(23:13):
has FTD, he doesn't have Alzheimer's. And I think that's
really important for people to understand that this is affecting
a different part of the brain, just like Louis body
or you know, there are so many other different forms.
So FTD can affect people in three different ways language, movement,
or behavior. These are like the subtypes of FTD. Bruce
(23:37):
has primary progressive aphasia, which is known as PPA FTD PPA.
So for him, I started noticing just his stutter. He
had a severe stutter as a child, right.
Speaker 2 (23:51):
I remember reading that it came back, and.
Speaker 1 (23:53):
It started to come back, and you know, like never
in my wildest dreams that I think that this was
a symptom of a young on set dementia. But you know,
a doctor at UCSF, his name is doctor Bruce Miller,
is an incredible neurologist. He said, you know, some of
the things to look out for is that you know,
if you are in your forties, fifties, sixties, when you are,
(24:15):
you should be very grounded in your life. You're holding
a job, you're raising your family. If you start seeing
someone change their personality or shifts start changing so drastically,
that is a change in the brain and that needs
to be addressed. FTD commonly gets misdiagnosed as bipolar depression,
(24:39):
midlife crisis. Because what happens is that when people go
in to the doctor, they present very well. They're going
to pass the Alzheimer's memory test of you know, you
draw the clock and the A to the one to
the two to the B. They're going to pass that
because their memory isn't affected. So it's very it's very
(25:01):
gray this area.
Speaker 2 (25:03):
Are the symptoms the same or do they vary from
patient to patient?
Speaker 1 (25:08):
It varies because of the different sub types that there are,
you know, behavioral variant that one you know from I
hear from other caregivers what I have heard and learned.
You know, it's inhibition, just being inappropriate, just having no filter.
And again that wasn't our experience, it was you know.
Speaker 2 (25:33):
PPA, So what is ppa? How does that manifest itself?
Speaker 1 (25:38):
So again that's coming into your temporal lobes primary progressive ephasia.
So for Bruce and his experience, his stutter came back.
Words weren't coming as naturally to him, which is just
so wild because he is all about words.
Speaker 2 (25:55):
And at first, I know you were like, wait, what
is going on? Is is he not gaslighting me? But
is he you know, messing with me? You know, yeah,
what's with him? What confusing?
Speaker 1 (26:08):
It's very confusing, you know, where I felt like we
were so aligned and there was something off, And again
it's just gray and ambiguous to say, like, well, what
was the thing and what was the It's just wasn't.
It wasn't the person that I married, you know, Bruce
was very different and I just couldn't put my finger
(26:32):
on it. But there just comes a point where you
have to sort of take the bull by the horns
and be like enough is enough, Like you know, when
your gut, you know your person better than anyone, and
you have to know that it is okay to advocate.
You need to raise your hand, you need to get
to the doctor, and you need to have your doctor listen.
Speaker 2 (26:52):
What are other signs that people should look for? Amma
erratic behavior in some cases, right, I mean not being
able to for things. I'm like, oh shit, you can't
remember things for some times. And I'm sure people listening
to this are like, oh, I can't remember names, which
is sort of kind of typical age related memory loss. Yes,
(27:12):
but are there other signs that are clearer that people
can be on the lookout for, you know, I'm sure,
as you said, they're varied among so many people. But
is there any kind of laundry list or how do
you know?
Speaker 1 (27:26):
I mean, I would say, like, if you start seeing
someone using shorter sentences or having a harder time finding
words or not using the right word, that would or
using the right words, that would be a sign. When
you see behavior starting just to be so out there,
you know, not like the person that you have known.
(27:47):
If you start seeing erratic behavior, that would be a
sign too. And then there's the movement piece. You know,
I can't really talk to that because I don't know
that so well, but I would say that, you know,
I don't even know what to say about the movement piece.
Speaker 2 (28:05):
But there's some people who experience it, right, and that's
something that at least you should be aware of.
Speaker 1 (28:13):
And again, I just can't stress enough how important it
is for us to know it's okay to speak to
our person's doctor.
Speaker 2 (28:19):
We need to, right, because I imagine a lot of
people are in denial or make excuses and don't want
to know, and don't want to know if it's so scary.
Speaker 1 (28:31):
It is so scary, It is so scary. But I
do really believe that the sooner we know the sooner
we could put support into place. You know what I
hear from so many experts, and this is what now
when you're in your caregiving journey, is that you know
people wait too long to ask for help or support.
Speaker 2 (28:53):
You learn that, I think yourself, and I'm curious, what
are the other things the important lessons you've learned, Things
that you might have done differently, Emma, if you had
known than what you know now.
Speaker 1 (29:07):
Oh goodness. I mean, I think the biggest one is
that it's okay to ask for help. I think society
has really taught us as women that you know, you
handle it, you do it, you take care of all
the things. You know, you put everyone else on that list,
you put yourself to the bottom, you don't complain, you
get in there, you handle your business. And I think
(29:31):
I wish you know I've learned. I'm learning to untangle
that I've always been very like self sufficient, independent, Like
I grew up with a single mom who was working
three jobs. Like you know, I knew how to take care.
I watched her just take care of all the things
and handle all the things. That was my model. And
(29:52):
I wish that I would have known that it was
okay to raise my hand and ask for support and
that I wasn't a failure because I needed it. And
I think that is something that I really want other
caregivers to hear, that we're not failing our person. We
are if we need help, like we are there. We're
(30:14):
trying to support them. And in order to sustain this journey,
we need to be able to rally that support and
bring that support in family, friends, whatever that looks like.
It is really important to be able to reach out
and assemble this team because dementia takes a team of people,
and people are doing this on their own because they
(30:36):
have no other option. And I think it's really important
for family and friends. You know, this book isn't just
for the caregiver. This book is also for family and
friends to understand, like this is this is real stuff,
and what can I do to help?
Speaker 2 (30:51):
How can I show up?
Speaker 1 (30:52):
How can I show up? What can I do? How
can I be there to support to sort of lift
this heavy load off of you know, my family, whomever
who is caring for someone, who's caring for someone? What
can I do?
Speaker 2 (31:07):
And it's not a sign of weakness, It's actually a
sign of strength to be able to say I need help. Yeah.
Another thing you write about is that when you realize
someone has limited time, that you try to make these
big gestures. And you write about a big trip you
(31:28):
were planning with Bruce and your daughters to Mexico, and
a really good friend who could be completely honest with
you told you it was a mistake. Tell me about
that and what you learned from that experience.
Speaker 1 (31:45):
Yeah, I mean, I think that is why it's so
important to have a friend who understands what dementia is,
what this journey looks like. Franny, who is just one
of my dearest friends. Her has been Paul had been
diagnosed with young onset Alzheimer's, and she was a few
(32:05):
steps ahead of me. Paul was already in his disease
at that time. Bruce didn't have a diagnosis, but we
knew something was happening. We didn't know what it was.
And you know, we were given a cautious sort of
green light to go on this trip that I felt
could possibly be one of our last trips as a family,
(32:27):
because I knew how complicated it was at home, right,
you know, And I thought, well, okay, we've been invited
on this trip it's just to Mexico. We live, you know,
on the West coast. This is going to be an easy,
doable trip. And you know, I'd planned it. I'd got it,
every eye crossed, every tea. And we were about a
(32:49):
week away and I was speaking to Franny about this
trip that we were going to go on, and Frannie
was like, no, no, no, no, no, no, don't do that.
You know, this is not going to be the trip
that you're envisioning. You can't take Bruce out of his
surroundings and just think like it's just magically going to
be okay elsewhere. And you know, she was right, And
(33:11):
I said, you know what, Okay, I'm going to cancel
this trip. And she's like, you're not canceling your trip.
You and the girls are going to go. And you
know they they want they've been wanting to do this.
Bruce would want you to do this. And I made
that call that came with so much guilt.
Speaker 2 (33:29):
I was going to say, gosh, that must have been agonizing.
Speaker 1 (33:32):
It was agonizing. It was agonizing. But what was really
beautiful about that was that, you know, the girls got
to see me out of this caregiving role and they
got to just experience me as their mom on that trip,
you know, like I was able to Sorry, I'm getting
emotional about it, but that's okay. You know, everything you
(33:56):
have to plan, everything is so planned, you have to
think about everything. And on that trip, I was able
just to wake up with them and go into the
ocean and get on our bikes and go for a
bike ride without having to think about, Okay, well if
I do this, who was watching Bruce? Who are we?
Speaker 2 (34:18):
Like?
Speaker 1 (34:18):
You just have to think about all of these things.
And they just really got to see me just be me.
And of course my mind was consistently with my husband
back home and everything okay, but like you know, and
Franny said, she's like, just be on just be with them,
just be in that moment of just like being in
(34:39):
the ocean, being on the beach, walking with them, And
that is what I did, and it was it was
really like the respite that the girls and I both needed.
Speaker 2 (34:47):
And so freeing for you. And obviously it doesn't mean
you weren't thinking about Bruce, but to almost be able
to exhale for a second, yeah, and we need important
for the girls too, and important.
Speaker 1 (35:00):
For them, you know, they were living this world too.
They needed a they needed.
Speaker 2 (35:05):
A break, and how was it for them? How did
you help them through it? Because gosh, it's hard enough
to be a parent, but then to be a parent
with one going through this. You know, my kids were
so little when Jay got sick. They were five and
one when he was diagnosed, and as I mentioned, he
was only sick for nine months before he died. But
(35:28):
even kind of trying to have some semblance of normalcy
for me and them was so traumatizing, honestly, and maybe
that's too strong a word, but really challenging. And now
this is what Ronald Reagan said, you know, this is
this long goodbye, and so how have you helped them
(35:52):
and prepared them to see their dad this way?
Speaker 1 (35:59):
So when the girl roles, the girls were eight and
ten when Bruce was diagnosed, and you know, at that point,
we knew something was coming, We knew something was in
the water, We knew we were going to be getting
a diagnosis at some point. You know, what I had
learned from one of the specialists that are the experts
that I bring into the book about how to communicate
with you know, how how I could communicate with them,
(36:22):
And I think what has been really important is that
I've always been very honest with them, you know, in
an age appropriate way, and when we had received the diagnosis,
I was able to tell them, you know, this is
the disease that you know your dad has. It's called
front of temporal dementia. And they're like, you know, I
said it's FTT. They're like, f D f d T.
(36:47):
I said, no FTD. So they came up with this
acronym of fantastic Turtles dancing, you know, to be able
to just you know, you know that that is that
seems right for their age, right, and you know, from
there I gave them sort of just like a brief
description of what FTD is and how it's affecting their
(37:09):
dad and his brain. And from there, you wait. I
waited to see if they had any other questions, and
they really didn't. I think it was just like a
sense of RELI there was like a sense of relief.
Speaker 2 (37:21):
I was going to say, Emma, because it must have
been even harder before you had a diagnosis, because you
were confused. So I can only imagine the girls were
very confused, and that must have been one of the
hardest periods, right trying to figure out what the heck
(37:41):
is going on?
Speaker 1 (37:42):
Those early days are really hard. They're very complicated. It's
very hard to manage. It was hard for me to
manage myself, let alone how to you know, figure out
what to do with the kids and how you know
this again, there was just a lot of even smoke
and mirrors happening within our own home. To protect them,
you know, from what was occurring, or to try and
(38:03):
you know, move the conversation if something just wasn't landing
right or seeming right. But you know, I have to
say for our girls now because again I think, you know,
we want to protect our kids and you don't want
to tell sometimes the hard truth. But I think it's
very important. I think there's a lot of safety around that.
(38:23):
I think they have a lot of safety knowing and
what I've always said to them, if anything changes, I'm
going to let you know, or if you have any questions,
you know, you can always come to me. I'm always
going to tell you the truth. And I think that
has been really helpful. I think that they have settled
into the what is I mean, they are growing up
(38:45):
seeing this disease progress in their father.
Speaker 2 (38:48):
Long was it Emma Between the time Bruce first started
to exhibit symptoms and when you got a definitive diagnosis.
Speaker 1 (38:58):
That is the thing about this disease. It's so great.
Speaker 2 (39:01):
You call it an ambiguous loss, right.
Speaker 1 (39:04):
It's just great to know, like when did this disease
start to rear its ugly head? And like where does
my husband start to stop?
Speaker 2 (39:14):
I don't know.
Speaker 1 (39:15):
You know what I hear, and I know now I'm
going back to Alzheimer's. But like with dementia, what I've
learned from doctor Richard Isaacson is that dementia can set
into your brain ten twenty thirty years before you even
receive a diagnosis. So how do you know?
Speaker 2 (39:34):
So I don't know.
Speaker 1 (39:36):
It's really hard for me to answer that.
Speaker 2 (39:38):
I think when I first met you, we talked about
having an extended family. You know, Bruce has a very
good relationship with his ex wife, dem Moore and his
daughters from that marriage, and I know that you all
have really worked hard to help each other. I also
(39:59):
know that ultimately it does fall on your shoulders because
you are Bruce's wife. That's right, But tell me about
that family circle that exists and how that has been
helpful to you, because it might model behavior for other families.
Speaker 1 (40:19):
I mean, listen, I mean I think if you know
of Bruce and Demi and their divorce and how they
handled that and you know, always putting their children first
was just of the utmost importance, and how they've been
able to sort of come out the other end of
you know, having a relationship built on respect and admiration.
(40:40):
You know, they really set us up for success, right
Like you know, if we could just start there, you
hear about people divorcing and that's already you know that
because turn can turn into a hot mess. But I
think that what the foundation that they've laid has really
helped us to be able to walk now this path
(41:01):
where at the end of the day, you know, we
all have our own special, unique relationship with Bruce, and
we all show up for him just to be able
to continue to support him and love him. And you know,
everyone has their own way of doing that, and you know,
at the end of the day, I think what's been
beautiful is that they respect what I'm doing, how I
(41:27):
care for Bruce, and they come in to be able
to support that.
Speaker 2 (41:31):
But you are the captain of the ship.
Speaker 1 (41:34):
Yeah, you know, this is happening in our home, and
we have two young children, and I'm a control freak,
So yeah, so there's that, But yeah, I mean they
I'm so blessed because I know there's so many families
(41:54):
that even couldn't be united from the start, but can
the idea of care and what that care looks like
and can get.
Speaker 2 (42:02):
Very hard, oh, very hard. I think situations like this
I've seen tear families apart, with resentment, people feeling like
one person is carrying the lion's share of the responsibility,
anger when people don't live nearby and aren't carrying their weight,
(42:24):
and it can really be an incredibly divisive and difficult
time for families. And you know, gosh, I think everyone
listening or watching this has seen a situation like this,
or when you know an aging parent or an alien
(42:44):
parent or spouse. Really it's mostly parents with the adult children,
I think. But it does create a lot of animosity
among people. And this is a different situation, I think.
But you could see kind of some anger surfacing. But
you all have not gone down that road.
Speaker 1 (43:06):
No, we haven't, and I don't see us if we've
gotten this far. I think I think we're good. I
think we're golden.
Speaker 2 (43:13):
You talk about the mood you bring into the room
as your emotional WiFi, which I love that term. But
to explain what you mean by that.
Speaker 1 (43:21):
Yeah, I mean our family. Our people are feel our energy.
You know, especially if someone going through the dementia journey.
If you are bringing the high stress and anxiety and
worry and anger and all the things into that room,
your person is going to pick up on that, like
(43:43):
your children will, right. You know, they are connected to
our emotional WiFi and mine was had a really spotty
connection for a long time, and you know, my husband
could feel it, my children can feel it. This is
you know, iired of having support. You know, I think
people don't understand what is happening behind closed doors. You
(44:07):
know how hard it is for caregivers. How Hi, It's
just such a high stress position, So it's very normal
for our wi fi to be buffering.
Speaker 2 (44:27):
Hi. Everyone, it's me Katie Couric. You know, if you've
been following me on social media, you know I love
to cook, or at least try, especially alongside some of
my favorite chefs and foodies like Benny Blanco, Jake Cohen,
Lighty Hoyke, Alison Roman, and Ina Garten. So I started
a free newsletter called good Taste to share recipes, tips
(44:47):
and kitchen mustaves. Just sign up at Katiecuric dot com
slash good Taste. That's k A t I E c
o u r ic dot com slash good Taste. I
promise your tas spuds will be happy you did. You
(45:11):
talk about sort of making sure that you take care
of your health, and a lot of people use the
analogy of putting your oxygen mask on first before you
help your children. And you know, there's pretty stark data
about the impact caregiving has on people's sell, isn't there.
Speaker 1 (45:32):
Yeah. I mean, Bruce's neurologist gave me this really incredible
wake up call that thirty percent of caregivers are dying
before the person that they're caring for. It was startling
because then you think that forty percent of caregivers they're
not able to make their own medical appointments right because
they are the last on the list, or they don't
(45:55):
have support at home to be able to go get
their colonoscopy, their a graham, they're just general check up.
So that was just a startling statistic to me. It
was a wake up call and I was so happy
it's startling as it was, it was really a wake
up call, and I was so happy that this neurologist
(46:15):
had told me that so that I could really just
get back into my senses of like, Okay, I'm not
going to have our children lose both of their parents.
Speaker 2 (46:24):
And not taking care of myself doesn't do anybody any good.
Speaker 1 (46:27):
And how can I then continue to show up for
the person that I love if I'm not caring for myself.
So I really needed to just to figure out a
new way to be able to start making my doctor's
appointments again and exercising, my goodness, just exercising, eating better,
(46:47):
you know, trying to get better sleep, which was very
difficult as a caregiver to do that. But I just
think that it's important to just put these things on
our radar and again to be able to just aren't
calling in the support so that you know, you can
go to your doctor's appointment, you know, like I have
a medical book for myself now of that you know,
(47:09):
whenever I am making a doctor's appointment for Bruce or
our daughters, that I always just go back to my
medical book to make sure that like, okay, this was
when my last pap smear was and this is when
my last you know, dental appointment was so that I
can also just keep an eye to make sure that
I am not forgetting myself.
Speaker 2 (47:30):
You know, we talked about some of the early symptoms emma,
and it makes me think, you know, early detection for
cancer is so critically important because if you can eradicate
the disease before it spreads, you know, your survival rate.
It's just really the difference between life and death oftentimes.
But with FTD, knowing you have it early, there still
(47:53):
isn't much that can be done in terms of modern medicine.
Is there no.
Speaker 1 (47:59):
I mean, you can manage the symptoms with medications, but
there is no treatment for FTD. And I think that
is why I think this awareness piece is so important,
because we want people to be diagnosed earlier so that
they can get into the clinical trials that are there.
(48:22):
You know, they're really concentrating right now on the genetic families,
because usually with genetic families, this is like it's running
in that line, right you see a grandparent to a
mother to you know, and you can get tested. I mean,
that's a whole other it's not my area, but you know,
(48:44):
if the person wants to get tested to see if
they might have this gene, then that is when these
trials really come in two hands into place, so that
they can now be in the trial to sort of
help as they marched through to the disease.
Speaker 2 (49:03):
But also I think increased awareness can lead to more funding, right,
And I think the brain has been sort of as
a loss leader in terms of medical research, primarily because
the brain is very hard has been very hard to study,
you know, like other parts of the body, you can't
(49:24):
get tissue samples for example. And you know, now I
think with modern technology and brain scans, there is much
more we're learning about how the brain operates. And then
there's the bloody blood brain barrier bloody meaning damn blood
brain barrier that prevents medicines from reaching the brain, which
(49:47):
is a whole other issue. But do you feel like
there's exciting research going on with all these forms of
dementia because I know that it it's been a really
tough nut to crack all of these diseases.
Speaker 1 (50:04):
I think we're so much closer than we think, you know,
I think that there's so much more talk and awareness
around brain health and that you know, there are actually
positive things that we can be doing today to care
for our brain that can really sort of change possibly
change the outcome, or at least if it's not going
to change the outcome, at least it might hold hold
(50:26):
it back a little bit so that we wait for,
you know, a medicine to sort of come in to
be able to hopefully cure reverse, slow down, whatever that
might be. I was at a conference in Amsterdam last
year called the is FTD and it brought together you know,
seven hundred and fifty researchers, scientists who are working in
(50:48):
the FTD field I know, all around the world and
to be able just to hear the exciting progress, you know,
progress is being made, and I want people to know that,
you know, people aren't just sitting there twiddling their thumbs.
You know, people are really they they are really rolling
up their sleeves and I am really hopeful that there
(51:10):
will be a breakthrough and that you know, what I
just hope and want for the next family is that,
you know, to go into that diagnosis appointment and instead
of hearing that there is no hope, there is nothing
that we can do, that they'll say, here is here
is a treatment. Here is something, here is some support.
(51:33):
You know, that is just what I want to see.
This just this different outcome. And I really do believe
that we we are getting there. I have hope in
that I trust that I know this community and and
they're in it to win it.
Speaker 2 (51:50):
I know that you talk about what you can do now,
and the Mediterranean diet is something that's really important. I
interviewed doctor Bruce Yankner from Harvard Medical School, who wrote
a paper that was published in Nature on August sixth.
You can tell I just interviewed him to say that
my head, and it was fascinating the role of lithium,
(52:14):
sort of this organic lithium that exists in your brain
and the fact that these amyloid deposits and these other
protein taul clusters, you know, that they absorbed the lithium.
And they were able to do autopsies on brains at
Institute in Chicago who they had tracked with Alzheimer's and
(52:36):
they saw this lithium depletion in most of these brains.
And when they gave in mice models lithium to the mice,
a specific kind of lithium, their memories returned and it
was really amazing and exciting, and now he's trying to
(52:58):
do clinical trials on human incredible, but he is worried
about NIH funding. And I'm sure that's something that you've
been reading about with a lot of alarm as I have,
since I care so deeply about medical research, specifically cancer research,
and I just attended a rally for medical research in Washington,
(53:19):
D C. This week, and I cannot understand why our
most valuable resources are fellow humans, could not be seen
as important to keep them healthy and to come up
with better treatments and a cure for many of these
diseases that take people way too soon.
Speaker 1 (53:41):
Yeah, I mean that has been really hard. It's been
a hard pill to swallow to watch that, you know,
we again like we're we are. There is such momentum
and to see that the possibility of that being taken
away is heartbreaking for so many.
Speaker 2 (53:59):
Families because as families you mentioned where they say there's
something we have for your loved one, you know, without
medical research, without these scientists, without funding, they're not going
to hear that, you know.
Speaker 1 (54:16):
I doctor Bruce Miller from UCSF, you know, has said
that by the year twenty fifty, dementia cases are going
to triple. You know, that's just a lot of people,
and we really need to think about funding, continued funding.
Speaker 2 (54:33):
And the societal impact of that, because it's not just
this terrible situation for an individual. It branches out to
their family, it branches out to productivity, you know, all
kinds of economic considerations when you think about this and
healthcare costs. So it is a huge, huge issue.
Speaker 1 (54:54):
Especially when you think about Medicare and Medicaid and all
the cuts, and you know, it was already the services
were already lacking and complicated to try and go through
the insurance to be able to try and find support
that you need or services that you need when you're
caring for someone with dementia, Like what is that going
to look like? Now? You know? And I think like
(55:16):
that is you know again, I'm like in the midst
of our journey. I am learning as I go. I
am really trying to learn how to use my voice,
how to become an advocate. But you know, my eye
is on the prize of like how do I get
to DC and support all the other people who are
there trying to raise their hand of like where's the
(55:39):
support for caregivers? You know where is that and this
is really such an issue and I would love to
be a part of that conversation.
Speaker 2 (55:51):
Well, I think you already are and will continue to be,
and I think many people look to you as a
real leader, Emma in this whole field. Although it pained me,
you know, I know you have gotten some criticism, and
I wondered if and people criticized because you made a
decision to move Bruce to a separate residence where he
(56:15):
could get round the clock care, and you know the
reaction has been I think must be very painful for
you in some ways or not. I mean it would
say things like Hemming admits to shifting Bruce to a
second residence and you know, welcome to American twenty twenty five,
(56:36):
where everyone judges everyone for everything. But it was painful
for me on behalf of you. Thank you to read
these things and to see people make judgments about your decisions.
And I'm wondering how you kind of took that in
(56:58):
and if it pained you or you were prepared for it,
how did you feel about that?
Speaker 1 (57:04):
I mean, this is twenty twenty five. I knew by
talking about this and being open and just honest and
the truth of what is that it would of course
be met with criticism and judgment. I had prepped myself really,
oh yeah, prepped myself for knowing that, And it was
kind of interesting to see kind of like the rollout
of that, like a social experiment, almost, to be able
(57:27):
to see just how people are so quick to judge
a caregiver and the decisions that they are trying to
make that are hard. You know, these are hard decisions,
and you know, again, dementia plays out differently in each person,
and I think that as caregivers, we need to do
(57:49):
and make decisions that are the safest and best for
our person and our family. And this was the best decision,
hardest decision, but the right one for our family.
Speaker 2 (58:07):
Did you feel like you had to justify your decision
after the criticism?
Speaker 1 (58:13):
No? You know what was interesting because I wanted to
really be able to talk about it in the book,
which is something that I did. And what I realized
is I was writing that I had so much anxiety
around talking about it, but I also knew how important
it was to be able to control our narrative before
this rolled out and got ahead of us, and.
Speaker 2 (58:33):
Also how important it was to be brutally honest, I imagine.
Speaker 1 (58:36):
Well, also, like the reason why I also did it
was because I wanted someone else to feel validated and
seeing in their decision when it comes time for them
to have to make a hard decision to be to
place their loved one in a care facility. You know, granted,
you know this is our second home, this is different,
(58:58):
but still, you know, again people don't understand all the
needs that aren't met behind closed doors. You know, now
Bruce's needs are met one hundred percent of the time,
and our children are in a home now that supports
their needs. So you know, this is really a win
win scenario for us. I think that, like, I'm not
(59:21):
taking a vote on it. I don't need all the
public opinion about it. You know, if you don't have
the experience, you don't get to say, if you are
not in this day in and day out, you know,
you have to do the best decision, the right decision.
And you know, going back to the chapter of that book,
you know, I did feel like I was over explaining
(59:41):
and defending and like this is why and dah dah,
da da dah. And over the course of a couple
of months and going back to that chapter. I'm like, no,
what am I doing? You know, I know that this
was the right decision. I don't need to defend this.
People are going to have an opinion. They are going
to judge it either way. I'm going to get judged
(01:00:01):
no matter what. But caregivers get judged, and I think
that just unfortunately comes with the territory, and I think
that narrative really needs to be changed. I mean, it
was also interesting for me to see other caregivers judging me.
You know, I would have never done that to my person,
or you know this, you should do it like this
(01:00:23):
or do it like that. Oh, you know, I'm just
I'm doing We're all doing the best that we can
in an impossible situation. And I know and see that
this was just the right decision for us, and we
all just have to do what is right for our family.
Speaker 2 (01:00:44):
I've always appreciated, I think I mentioned earlier that you've
always been so upfront and aware of the fact that
so many people in this country who find themselves in
this position simply don't have resources. Is there anything that
you hope will be done about that as a result
(01:01:07):
of being public about your experiences? Is there are there
policy changes? Are there ways that we can support these
sixty three million you said caregivers in the United States?
Speaker 1 (01:01:24):
I mean, I think it's important that we're electing officials
that are thinking about caregivers and that they are at
the top of mind because at some point in our
lives we will need care or we will need to
care for someone else. So it's important that we are
looking at that. And I am sure again that there
(01:01:44):
are policies and things and stuff, and I am going
to continue to learn and grow and figure out how
how to use my voice so that caregivers can be
supported because they are not again, they are uns they
are unsupported. They are doing it on their own, and
it is not sustainable. I mean, you see those statistics.
(01:02:08):
It is not sustainable. So how are we caring for
the caregiver? I mean, there has to be a big
picture here to be able to help caregivers who don't
have the time, the energy, the resources, the access. And
I am just one voice of many.
Speaker 2 (01:02:26):
Do you ever get pissed and just feel like, I
mean it's perfectly normal, like why me, why us? This sucks?
You know, I can't believe it. I'm pissed.
Speaker 1 (01:02:41):
Yeah, I was early on, I think like why, yeah,
why us? Why him? Why our daughters? Why me? And
now I'm in this position of like, I can't believe
that I am this person? Now, who is you know,
just such an introvert like I you're shy?
Speaker 2 (01:02:59):
I am so shy. You don't seem as shy as
you were when I first met you.
Speaker 1 (01:03:03):
No, I'm like getting my bearings with it. I'm realizing that,
you know, like this conversation, it's bigger than me, it's
bigger than my husband, and I need as Bruce would say, Emma,
you got to get out of your own way. And
I'm just trying to get out of my own way
and just trying to do the best that I can
with the brain that I've been given. You know, I'm
a high school dropout. I can't believe it's me. I
went off to like become a model, and you know,
(01:03:25):
I just can't believe it's me. I can't believe it's me.
I can't believe that I am the one that wrote
a book that you know, really is such a simple
It's not that it's it is simple. How is there
this gap? You know? How is there this gap that
has not really been fully you know, filled. You know,
(01:03:46):
how are we walking out with no support? You know?
And I just i can see these little tiny gaps
and I'm just trying to just trying to figure it
out in real time.
Speaker 2 (01:03:56):
I think it's incredibly selfless of you, because I think
a lot of people would kind of hibernate and deal
with it in an uber private way. But I think that,
you know, I always think sometimes you find your purpose,
and sometimes your purpose finds you and it's not necessarily
what you wanted it to be, and yet you know,
(01:04:22):
you find yourself stepping up and filling a need and
fulfilling a role that you never anticipated, but you feel
is more important than just you and your own situation.
And it's it's hard to do, but it's really important,
and ultimately I think it is it's really gratifying and
(01:04:45):
fulfilling to feel that somehow, some way you're helping someone else.
Speaker 1 (01:04:51):
I mean, I do really feel like I've found my purpose.
And I do think, yeah, sure I could have remained
I could have remained private about it, but that was
honestly again, like that wasn't helping us, It's not going
to help someone else. So this being able to advocate,
being able to just share and now be in rooms
(01:05:13):
with people that again other caregivers. It's so meaningful and
I am really it's in a way it is helping me,
you know, it is helping me heal, and I am
so grateful for that. I'm so grateful for these opportunities
that I'm being given and to be able to grow
(01:05:35):
from this experience. It's saving me.
Speaker 2 (01:05:41):
Well. I appreciate you so much. I appreciate you not
only sharing your story, but through sharing it, moving science
forward faster, through a greater awareness and being the public
face of a disease that I think often kept in
(01:06:01):
the shadows and surrounded by unnecessary shame and stigma and stigma.
And I know that so many people appreciate you too
and appreciate what you've done and the fact that you've
written this book, The Unexpected Journey, Finding strength, hopeing yourself
(01:06:22):
on the caregiving path. Am a great to see you again.
Thank you for coming in. I really love talking to you,
and I still believe what I found when I first
met you, that you just emanate grace and intelligence and
now a new kind of strength.
Speaker 1 (01:06:40):
So thank you, thank you for having me Katie Thank you.
I appreciate it.
Speaker 2 (01:06:46):
Thanks for listening everyone. If you have a question for me,
a subject you want us to cover, or you want
to share your thoughts about how you navigate this crazy world,
reach out send me a DM on Instagram. Love to
hear from you. Next Question is a production of iHeartMedia
and Katie Couric Media. The executive producers are Me, Katie Kuric,
(01:07:08):
and Courtney Ltz. Our supervising producer is Ryan Martz, and
our producers are Adriana Fazzio and Meredith Barnes. Julian Weller
composed our theme music. For more information about today's episode,
or to sign up for my newsletter, wake Up Call,
go to the description in the podcast app, or visit
(01:07:29):
us at Katiecuric dot com. You can also find me
on Instagram and all my social media channels. For more
podcasts from iHeartRadio, visit the iHeartRadio app, Apple Podcasts, or
wherever you listen to your favorite shows.
In this world where I feel like we're also just disconnected.
There is something so beautiful about this connection that I
am getting from other care partners that are going through this.
It is deep, it is meaningful. I don't have to
have these long drawn out conversations with them. We can
see each other, We hold hands, we hug, we cry together.
(00:23):
I mean, there is such beauty in that in a
world that just feels so discombobulated.
Speaker 2 (00:31):
Hi. Everyone, I'm Katie Couric, and this is next question.
Emma Hemi Willis and I met a few years ago,
and I was immediately struck by her grace and intelligence.
She somehow exuded calmness and serenity, but I also knew
that every day she was probably feeling like her heart
was in a vice because she's had to witness the
(00:53):
heartbreaking decline of her husband, Bruce Willis from Front Door
temporal Dementia. Becomes such an important voice from millions of
caregivers all around the world, bravely sharing her family's experience,
and now she's written a book that will make so
many people like her feel less alone, called The Unexpected Journey,
(01:14):
Finding Strength, Hope, and Yourself on the Caregiving Path. Emma
invites us into the realities of FTD, the early signs,
the ambiguous loss, and the toll caregiving takes, and she
offers practical ways to build community, protect your own health,
and keep love at the center. It's candid, compassionate, and
(01:35):
full of hard won wisdom. Emma, So good to see you.
Thank you so much for coming in and talking to
me about your book.
Speaker 1 (01:44):
Thank you so much, thank you for having me.
Speaker 2 (01:46):
I'm really happy to see you again. You know, we,
as I said, got to know each other a little
bit a couple of years ago, and last October we
spoke at a town and country summit all about caregiving,
and in that conversation you said to me, I'm trying
to find that balance between the grief and the sadness
(02:07):
that I feel, which can just crack open at any
given moment, and finding joy. I say that FTD whispers,
it doesn't shout. It's hard for me to say. This
is where Bruce ended, and this is where his disease
started to take over. Bruce was diagnosed in twenty twenty two,
(02:27):
you said, but a year prior, we had a loose
diagnosis of aphasia, which is a symptom of a disease,
but is not the disease. So here we are nearly
a year later, and I'm wondering how things have shifted
or changed for you since we had that conversation.
Speaker 1 (02:48):
Well you just reading that, I'm like, yeah, that tracks
all of that, you know, I think that over time, Well,
I think where I am today, I'm finding I'm a
little more. I think I'm again learning how to walk
with grief, but really being open to find moments of
(03:09):
joy like that is really starting to come in. I
realized that it's okay for me to find joy, find laughter,
you know, find light that by me not it's not
going to make Bruce any better or any worse. So
I think that I'm just I feel I have a
(03:30):
little more footing today than probably a year ago.
Speaker 2 (03:35):
It's a process, and you've adjusted to this new normal.
And as things have progressed for Bruce, I guess every
stage requires a bit of an adjustment period, right.
Speaker 1 (03:49):
Yeah, I mean I've definitely adjusted. And I remember where
I started and I could never even imagine that I
would find my footing, And I do kind of wish
someone would have told me that in those early days,
Like I know, this feels so terrible. But over time,
like you will find your footing, you will learn how
(04:12):
to make this your new normal. But I didn't know
that in those early days, and maybe I just wasn't
probably even ready to hear that. But you know, with
this disease, it is a progressive disease, and you know
there's peaks and plateaus, and right now we're in a
really good position. But I know that the next shoe
(04:34):
will drop because it's inevitable, because this is a progressive disease.
So you know, you're kind of always a little bit
on edge, a little bit on pins and needles, thinking
like what next. But what I know is that I
know when the next shoe drops, I'm going to be
there to pick it up.
Speaker 2 (04:53):
Is that because you have really educated yourself about this disease,
you have prepared yourself for the future.
Speaker 1 (05:05):
What I have learned from one of the you know
specialists in my book, TIPA Snow, She says knowledge is
the greatest stress reducer. And I think me becoming really
educated and knowledgeable about what this disease is and isn't
and how it presents and you know, what are things
to look for, has really helped kind of settle. I
(05:28):
had had this siren going off in my head next
to my ear all the time. But I think it's
really helped the knowledge, The education is really settled, silenced,
not silenced, it's the volume has been turned down.
Speaker 2 (05:42):
You know. That's so interesting when I hear you say that,
because when my husband was sick, you know, that's the
last thing I wanted was knowledge, because everything I read
was so devastating. And I think that's somehow I pushed
all that away and placed it with hope. And it
(06:04):
is sort of this strange mixture, right of magical thinking
denial in some ways, at least early on, and of
course Jay was only six for nine months, and you
know it was much a much faster progression, a much
different disease, right, But I eschewed any information about stage
(06:29):
four Colling cancer because I thought, well, if we can
just manage it, if we can just wait, and something's
going to come up and a new treatment is going
to surface. And did you find yourself engaged in that
kind of magical thinking for a while?
Speaker 1 (06:46):
Definitely early on before we had a diagnosis, right, I
wanted to try and figure out fix, you know, see
what was happening, how can we do this? You know
what treatments are there? How can we did all the
things I did, all the things, I turned over every
stone because I had hope. I really felt like there
(07:07):
was going to be something out there that was going
to fix whatever this ambiguous thing was that we were
dealing with.
Speaker 2 (07:14):
Right, And if you're a can't do person, am I
think you say, Okay, how do we fix this? What's
the solution? We're going to come up with something? And
I think that feeling of powerlessness is so devastating and
something that is really hard to accept.
Speaker 1 (07:34):
I think for us, what was important for me was
getting to that diagnosis and understanding what it was that
we were dealing with, and understanding that there is no
treatment and there is no cure, and to then really
be able to sync into not this magical thinking, but like, Okay,
(07:56):
this is what's been presented. Now I just need to
ground myself in this and see how can I best
support Bruce, our two young daughters, and our family and
myself through this.
Speaker 2 (08:08):
It must have been crushing, and yet having a diagnosis
did it give you any kind of relief? Just knowing
what was going on?
Speaker 1 (08:19):
One hundred percent? You know, it was like the blessing
of the curse. It was a relief to finally be
able to put a name on what it was so
that I could then really understand what this disease is
and also be able to separate my husband from his
disease because you know, for so long it was you know,
(08:40):
you think that someone is making these personal choices. You know,
dementia's is interesting before you come to a diagnosis and
you think that what they're doing, what they're saying, is
a personal choice. But then you realize, oh, no, this
is actually a disease of the brain. His brain is
being dismantled, And then you know, you can have so
(09:00):
much more empathy, compassion, patience when you understand what the
disease is. So I think, yeah, getting to that diagnosis
was an important important for me to be able to
move forward and get out of the denial and what
(09:23):
you know, magical thinking of being able to turn this
thing around and really understanding what saventure is.
Speaker 2 (09:32):
When we had that conversation that I mentioned last October,
you said you were writing a book for caregivers, and
at the time you said, it's not just about how
to care for your loved ones, it's about how to
look after yourself in the process. So now you've written
this book, You've poured your heart and soul into it.
You've been traveling the country, you've been doing interviews, you've
(09:54):
been talking to people, and I'm really curious. I'm about
the reaction you've gotten from p people. I'm sure you've
heard from many, many people who are in similar situations,
because there are millions of people like you who are caregivers,
not only in this country, but really all around the world.
Speaker 1 (10:13):
I mean, there's sixty three million caregivers in the US,
eleven million of which you're caring for someone with dementia.
It's affecting so many people. It's everyone's story, right, Everyone
is affected by this. So, you know, being able to
like the mission, the purpose of that book was to
be able to support the next caregiver because caregivers are unseen,
(10:38):
they are unsupported, so many are doing this on their.
Speaker 2 (10:41):
Own, undervalued, undervalued.
Speaker 1 (10:44):
It's and what I knew was that with the experts
and the specialists, that I had to be able to
surround our family. You know, I was able to do
that because I have some time, I have some energy,
I have resources, and I have access and many don't.
Many caregivers don't. And what's happening in these doctor's office
(11:08):
is that you're getting a diagnosis. You know our stories
that we got the diagnosis and it was a you know,
a diagnosis and audios, you know that was it. Chuck
back in in a couple of months and you leave
with nothing. I left with a disease I couldn't pronounce,
I didn't understand it, and no support and I had
to dig into the internet to really understand what FTD
(11:32):
was and how do I support our family and what
will this look like over time? And being able then
to sort of come out with our family's statement to
then relax a little bit so that I could then
go out and actually talk to these specialists, bring them in.
I knew that the information that I was sitting on
(11:53):
was so valuable because it was helping me, it was
helping support our family, and I just knew there is
a gap out there, and I had this information and
I was able to put this in the book to
be able to give to another caregiver, just to be
able to be of service to someone else.
Speaker 2 (12:13):
What do you wish had happened that first hour when
you were told of Bruce's diagnosis. How do you think
medical folks could help patients more from the get go.
Speaker 1 (12:31):
Listen, what I know is that doctors only have a
finite amount of time to spend with their patient. But
what I wish would have happened was that, you know,
here is the diagnosis, this is what it is, and
then just to be able to provide the caregiver the
family with one piece of paper that has a couple
(12:54):
of you know, websites on there that can support the caregiver.
Because when you walk out with nothing and a check
back in, you know, that was a really traumatic doctor's appointment.
The fact that I had to do such deep therapy
around that because I couldn't even talk about that. You know,
I you walk out of that and you just your
(13:16):
whole world has just shifted drastically and you're leaving with nothing.
So I just think, you know, gosh, you know, if
they even if you would have just given me one resource, like, okay, well,
your husband's had been diagnosed with fronto temporal you know, dementia.
Here is an organization that would be your first resource.
(13:40):
Go on their website. It's the aft D, the Association
for a Fronto temporal degeneration, you.
Speaker 2 (13:46):
Know, just one or here's a support grew.
Speaker 1 (13:48):
Here's a support group that we offer at our institution, right,
you know, here is a social worker who is going
to now take you into another room to be able
to let you know these are some of the things
that you should think about or come back in a
couple of days when this is settled and we've got
you like we're gonna, we're there is support for you.
Speaker 2 (14:09):
And then of course you had to help Bruce process it,
which must have been even more challenging because you not
only had to process it yourself, but you had I
can't imagine how difficult that was, Emma, Listen.
Speaker 1 (14:27):
By the time we got a diagnosis, for most people
with FTD, they are well into their disease. So for Bruce,
and like for you know, a majority of FTD patients,
they don't realize, they don't grasp That's another blessing I
think in this It's like the one thing, one bit
(14:48):
of grace that FTD I think has given me and
our family is that Bruce never tapped into it. And
I'm grateful for that. I sure did.
Speaker 2 (14:59):
But along the way, did he ever kind of express
to you I'm having trouble or was it just a
slow erosion of his cognitive ability that just kind of
he accepted as it happened.
Speaker 1 (15:20):
I think that he didn't realize that it was happening.
Speaker 2 (15:22):
That is.
Speaker 1 (15:24):
How crazy this disease is. It just starts stripping away
your cognitive thinking as a whole, so.
Speaker 2 (15:37):
You can't even really understand what's happening.
Speaker 1 (15:41):
You can't understand what's happening.
Speaker 2 (15:42):
I know that you started talking about taking care of Bruce,
and I thought this was so brave of you, Emma,
on social media, you know, during and really talking about
it and helping other people. And I just wanted to
ask you because I don't think we covered it the
kind of feedback you get from other caregivers who have
(16:03):
followed your journey, who have now read your book, who feel,
as I said in the introduction, less alone because of you.
Can you talk about the feedback you've gotten from them
and so many others?
Speaker 1 (16:15):
I mean, it's definitely been so positive, right. I think
that being able to tell, you know, people what this
disease is, you know, it opened up the door to
other people within our community because no one knew what
FTD was. I mean when you get diagnosed with it.
Speaker 2 (16:35):
It's a rare disease and it's a subset of dementia.
Alzheimer's is the vast majority of that subset, but frontotemporal
dementia is another. That's right, there are many diseases. There's
that umbrella of dementia.
Speaker 1 (16:48):
Well, I've learned that there's about one hundred and twenty
different forms of dementia, so there's a lot. Right. We
do always think of Alzheimer's because that is the most common,
but there are plenty of other different dementia, you know,
I think think for other caregivers, there has been so
much I think just support and kindness and love, but really,
(17:11):
you know, we caregivers live in it in such isolation.
Myself included, you know, there was so much smoke and mirrors.
Wasn't able to connect with other people because I was
just so scared about you know, this getting out before
we were ready to talk about you.
Speaker 2 (17:25):
I had that added layer of Bruce Bean a public figure,
which is so much pressure, and I can relate to that.
Even though when my husband was sick, I was the
public figure, but I fiercely guarded his privacy too because
it was tabloid fodder, and it was awful.
Speaker 1 (17:43):
It's awful, and I knew it would get really bad,
and I just wanted again just to protect him and
just try and navigate this as quietly as possible. But
there just came a point where I realized, like, this
is silently killing me, not being able to talk to
(18:04):
anyone and just doing all of this thinking in my
head and worrying and what if thinking and catastrophizing everything.
And you know, the blessing has been to just go
the complete opposite of that, so that I can now,
you know, be in these rooms with other caregivers. It
(18:25):
doesn't matter who my husband is, you know, this caregiving
just like it levels the playing field. I get to
now connect with another caregiver who just gets it and
sees me and canvalidate me. And it goes both ways.
I mean, in this world where I feel like we're
also just disconnected, there is something so beautiful about this
(18:49):
connection that I am getting from other care partners that
are going through this. It is deep, it is meaningful.
I don't have to have these long drawn out conversations
with them. We can see each other, We hold hands,
we hug, we cry together. I mean, there is such
beauty in that in a world that just feels so discombobulated.
Speaker 2 (19:18):
Hi everyone, it's me Katiekuric. You know, lately, I've been
overwhelmed by the whole wellness industry, so much information out
there about flaxed pelvic floor serums and anti aging. So
I launched a newsletter It's called Body and Soul to
share expert approved advice for your physical and mental health.
(19:38):
And guess what, it's free. Just sign up at Katiecuric
dot com slash Body and Soul. That's k A T
I E C O U r C dot com slash
Body and Soul. I promise it will make you happier
and healthier. Your book is really kind of a how
(20:07):
to book in many ways. It's not really just your story,
it's your learnings. And you have line pages that invite
readers to write down their responses to questions like what's
one thing you can do to build more community and
connection for yourself? What are my barriers to exercising? I
(20:29):
feel like you're helping people make a plan and you're
not asking them to read between the lines of what
they can do. You're actually really kind of being a
guide for this journey. And I'm curious why you purposely
created the book this way.
Speaker 1 (20:48):
Because you know, I am very pragmatic, you know, I
like to have a plan. I like to know what
it is that I need to do. And I also
think like caregivers are so fatigued with trying to figure
everything out or trying to figure all the things all
the time. We're making decisions all the time, and I
(21:08):
just really wanted a book that just presented things to
the caregiver so that can just take the thinking away
from them so that they can now have these actionable,
tangible ideas that they can start to put into practice today,
you know, and you know, yes this is parts of
(21:30):
my story. But I think what is really powerful about
this book is the experts and the specialists lending their
voice to really tell the to give the caregiver permission,
you know, to tell the caregiver how.
Speaker 2 (21:44):
To what to do. And this isn't just for FTD.
I mean no, it can be relevant to any kind
of caregiver, right I think.
Speaker 1 (21:52):
So, I mean I wanted to stay in my lane
right like FTD is our journey. This is what I know.
The awareness piece I think is really important to you
in this day and age, but it is really for
anyone going through the dementia journey, or as you said,
just as a caregiver. I think that there are some
really valuable ideas, advice tips in there that can really
(22:17):
help someone else.
Speaker 2 (22:18):
Give us a quick primer if you could, Emma on FTD,
what you want people to know about this specific disease.
Speaker 1 (22:29):
Okay, so let me try. It is even me what
I'm like, wait, what is it is? It is difficult
to talk about. So FTD is frontal temporal degeneration. It
affects the front part, the frontal lobe and your temporal lobes.
And you know, your frontal lobe is like how we
show up in the world decision making, you know, how
(22:50):
we have empathy, sympathy, you know, just for others, and
our temporal lobes. That is communication, that is yet language,
being able to read comprehension, and it is different to Alzheimer's.
So when people people will always ask me like, oh,
you know, does Bruce know who you are? Does he
remember you? And I said, yeah, he does because he
(23:13):
has FTD, he doesn't have Alzheimer's. And I think that's
really important for people to understand that this is affecting
a different part of the brain, just like Louis body
or you know, there are so many other different forms.
So FTD can affect people in three different ways language, movement,
or behavior. These are like the subtypes of FTD. Bruce
(23:37):
has primary progressive aphasia, which is known as PPA FTD PPA.
So for him, I started noticing just his stutter. He
had a severe stutter as a child, right.
Speaker 2 (23:51):
I remember reading that it came back, and.
Speaker 1 (23:53):
It started to come back, and you know, like never
in my wildest dreams that I think that this was
a symptom of a young on set dementia. But you know,
a doctor at UCSF, his name is doctor Bruce Miller,
is an incredible neurologist. He said, you know, some of
the things to look out for is that you know,
if you are in your forties, fifties, sixties, when you are,
(24:15):
you should be very grounded in your life. You're holding
a job, you're raising your family. If you start seeing
someone change their personality or shifts start changing so drastically,
that is a change in the brain and that needs
to be addressed. FTD commonly gets misdiagnosed as bipolar depression,
(24:39):
midlife crisis. Because what happens is that when people go
in to the doctor, they present very well. They're going
to pass the Alzheimer's memory test of you know, you
draw the clock and the A to the one to
the two to the B. They're going to pass that
because their memory isn't affected. So it's very it's very
(25:01):
gray this area.
Speaker 2 (25:03):
Are the symptoms the same or do they vary from
patient to patient?
Speaker 1 (25:08):
It varies because of the different sub types that there are,
you know, behavioral variant that one you know from I
hear from other caregivers what I have heard and learned.
You know, it's inhibition, just being inappropriate, just having no filter.
And again that wasn't our experience, it was you know.
Speaker 2 (25:33):
PPA, So what is ppa? How does that manifest itself?
Speaker 1 (25:38):
So again that's coming into your temporal lobes primary progressive ephasia.
So for Bruce and his experience, his stutter came back.
Words weren't coming as naturally to him, which is just
so wild because he is all about words.
Speaker 2 (25:55):
And at first, I know you were like, wait, what
is going on? Is is he not gaslighting me? But
is he you know, messing with me? You know, yeah,
what's with him? What confusing?
Speaker 1 (26:08):
It's very confusing, you know, where I felt like we
were so aligned and there was something off, And again
it's just gray and ambiguous to say, like, well, what
was the thing and what was the It's just wasn't.
It wasn't the person that I married, you know, Bruce
was very different and I just couldn't put my finger
(26:32):
on it. But there just comes a point where you
have to sort of take the bull by the horns
and be like enough is enough, Like you know, when
your gut, you know your person better than anyone, and
you have to know that it is okay to advocate.
You need to raise your hand, you need to get
to the doctor, and you need to have your doctor listen.
Speaker 2 (26:52):
What are other signs that people should look for? Amma
erratic behavior in some cases, right, I mean not being
able to for things. I'm like, oh shit, you can't
remember things for some times. And I'm sure people listening
to this are like, oh, I can't remember names, which
is sort of kind of typical age related memory loss. Yes,
(27:12):
but are there other signs that are clearer that people
can be on the lookout for, you know, I'm sure,
as you said, they're varied among so many people. But
is there any kind of laundry list or how do
you know?
Speaker 1 (27:26):
I mean, I would say, like, if you start seeing
someone using shorter sentences or having a harder time finding
words or not using the right word, that would or
using the right words, that would be a sign. When
you see behavior starting just to be so out there,
you know, not like the person that you have known.
(27:47):
If you start seeing erratic behavior, that would be a
sign too. And then there's the movement piece. You know,
I can't really talk to that because I don't know
that so well, but I would say that, you know,
I don't even know what to say about the movement piece.
Speaker 2 (28:05):
But there's some people who experience it, right, and that's
something that at least you should be aware of.
Speaker 1 (28:13):
And again, I just can't stress enough how important it
is for us to know it's okay to speak to
our person's doctor.
Speaker 2 (28:19):
We need to, right, because I imagine a lot of
people are in denial or make excuses and don't want
to know, and don't want to know if it's so scary.
Speaker 1 (28:31):
It is so scary, It is so scary. But I
do really believe that the sooner we know the sooner
we could put support into place. You know what I
hear from so many experts, and this is what now
when you're in your caregiving journey, is that you know
people wait too long to ask for help or support.
Speaker 2 (28:53):
You learn that, I think yourself, and I'm curious, what
are the other things the important lessons you've learned, Things
that you might have done differently, Emma, if you had
known than what you know now.
Speaker 1 (29:07):
Oh goodness. I mean, I think the biggest one is
that it's okay to ask for help. I think society
has really taught us as women that you know, you
handle it, you do it, you take care of all
the things. You know, you put everyone else on that list,
you put yourself to the bottom, you don't complain, you
get in there, you handle your business. And I think
(29:31):
I wish you know I've learned. I'm learning to untangle
that I've always been very like self sufficient, independent, Like
I grew up with a single mom who was working
three jobs. Like you know, I knew how to take care.
I watched her just take care of all the things
and handle all the things. That was my model. And
(29:52):
I wish that I would have known that it was
okay to raise my hand and ask for support and
that I wasn't a failure because I needed it. And
I think that is something that I really want other
caregivers to hear, that we're not failing our person. We
are if we need help, like we are there. We're
(30:14):
trying to support them. And in order to sustain this journey,
we need to be able to rally that support and
bring that support in family, friends, whatever that looks like.
It is really important to be able to reach out
and assemble this team because dementia takes a team of people,
and people are doing this on their own because they
(30:36):
have no other option. And I think it's really important
for family and friends. You know, this book isn't just
for the caregiver. This book is also for family and
friends to understand, like this is this is real stuff,
and what can I do to help?
Speaker 2 (30:51):
How can I show up?
Speaker 1 (30:52):
How can I show up? What can I do? How
can I be there to support to sort of lift
this heavy load off of you know, my family, whomever
who is caring for someone, who's caring for someone? What
can I do?
Speaker 2 (31:07):
And it's not a sign of weakness, It's actually a
sign of strength to be able to say I need help. Yeah.
Another thing you write about is that when you realize
someone has limited time, that you try to make these
big gestures. And you write about a big trip you
(31:28):
were planning with Bruce and your daughters to Mexico, and
a really good friend who could be completely honest with
you told you it was a mistake. Tell me about
that and what you learned from that experience.
Speaker 1 (31:45):
Yeah, I mean, I think that is why it's so
important to have a friend who understands what dementia is,
what this journey looks like. Franny, who is just one
of my dearest friends. Her has been Paul had been
diagnosed with young onset Alzheimer's, and she was a few
(32:05):
steps ahead of me. Paul was already in his disease
at that time. Bruce didn't have a diagnosis, but we
knew something was happening. We didn't know what it was.
And you know, we were given a cautious sort of
green light to go on this trip that I felt
could possibly be one of our last trips as a family,
(32:27):
because I knew how complicated it was at home, right,
you know, And I thought, well, okay, we've been invited
on this trip it's just to Mexico. We live, you know,
on the West coast. This is going to be an easy,
doable trip. And you know, I'd planned it. I'd got it,
every eye crossed, every tea. And we were about a
(32:49):
week away and I was speaking to Franny about this
trip that we were going to go on, and Frannie
was like, no, no, no, no, no, no, don't do that.
You know, this is not going to be the trip
that you're envisioning. You can't take Bruce out of his
surroundings and just think like it's just magically going to
be okay elsewhere. And you know, she was right, And
(33:11):
I said, you know what, Okay, I'm going to cancel
this trip. And she's like, you're not canceling your trip.
You and the girls are going to go. And you
know they they want they've been wanting to do this.
Bruce would want you to do this. And I made
that call that came with so much guilt.
Speaker 2 (33:29):
I was going to say, gosh, that must have been agonizing.
Speaker 1 (33:32):
It was agonizing. It was agonizing. But what was really
beautiful about that was that, you know, the girls got
to see me out of this caregiving role and they
got to just experience me as their mom on that trip,
you know, like I was able to Sorry, I'm getting
emotional about it, but that's okay. You know, everything you
(33:56):
have to plan, everything is so planned, you have to
think about everything. And on that trip, I was able
just to wake up with them and go into the
ocean and get on our bikes and go for a
bike ride without having to think about, Okay, well if
I do this, who was watching Bruce? Who are we?
Speaker 2 (34:18):
Like?
Speaker 1 (34:18):
You just have to think about all of these things.
And they just really got to see me just be me.
And of course my mind was consistently with my husband
back home and everything okay, but like you know, and
Franny said, she's like, just be on just be with them,
just be in that moment of just like being in
(34:39):
the ocean, being on the beach, walking with them, And
that is what I did, and it was it was
really like the respite that the girls and I both needed.
Speaker 2 (34:47):
And so freeing for you. And obviously it doesn't mean
you weren't thinking about Bruce, but to almost be able
to exhale for a second, yeah, and we need important
for the girls too, and important.
Speaker 1 (35:00):
For them, you know, they were living this world too.
They needed a they needed.
Speaker 2 (35:05):
A break, and how was it for them? How did
you help them through it? Because gosh, it's hard enough
to be a parent, but then to be a parent
with one going through this. You know, my kids were
so little when Jay got sick. They were five and
one when he was diagnosed, and as I mentioned, he
was only sick for nine months before he died. But
(35:28):
even kind of trying to have some semblance of normalcy
for me and them was so traumatizing, honestly, and maybe
that's too strong a word, but really challenging. And now
this is what Ronald Reagan said, you know, this is
this long goodbye, and so how have you helped them
(35:52):
and prepared them to see their dad this way?
Speaker 1 (35:59):
So when the girl roles, the girls were eight and
ten when Bruce was diagnosed, and you know, at that point,
we knew something was coming, We knew something was in
the water, We knew we were going to be getting
a diagnosis at some point. You know, what I had
learned from one of the specialists that are the experts
that I bring into the book about how to communicate
with you know, how how I could communicate with them,
(36:22):
And I think what has been really important is that
I've always been very honest with them, you know, in
an age appropriate way, and when we had received the diagnosis,
I was able to tell them, you know, this is
the disease that you know your dad has. It's called
front of temporal dementia. And they're like, you know, I
said it's FTT. They're like, f D f d T.
(36:47):
I said, no FTD. So they came up with this
acronym of fantastic Turtles dancing, you know, to be able
to just you know, you know that that is that
seems right for their age, right, and you know, from
there I gave them sort of just like a brief
description of what FTD is and how it's affecting their
(37:09):
dad and his brain. And from there, you wait. I
waited to see if they had any other questions, and
they really didn't. I think it was just like a
sense of RELI there was like a sense of relief.
Speaker 2 (37:21):
I was going to say, Emma, because it must have
been even harder before you had a diagnosis, because you
were confused. So I can only imagine the girls were
very confused, and that must have been one of the
hardest periods, right trying to figure out what the heck
(37:41):
is going on?
Speaker 1 (37:42):
Those early days are really hard. They're very complicated. It's
very hard to manage. It was hard for me to
manage myself, let alone how to you know, figure out
what to do with the kids and how you know
this again, there was just a lot of even smoke
and mirrors happening within our own home. To protect them,
you know, from what was occurring, or to try and
(38:03):
you know, move the conversation if something just wasn't landing
right or seeming right. But you know, I have to
say for our girls now because again I think, you know,
we want to protect our kids and you don't want
to tell sometimes the hard truth. But I think it's
very important. I think there's a lot of safety around that.
(38:23):
I think they have a lot of safety knowing and
what I've always said to them, if anything changes, I'm
going to let you know, or if you have any questions,
you know, you can always come to me. I'm always
going to tell you the truth. And I think that
has been really helpful. I think that they have settled
into the what is I mean, they are growing up
(38:45):
seeing this disease progress in their father.
Speaker 2 (38:48):
Long was it Emma Between the time Bruce first started
to exhibit symptoms and when you got a definitive diagnosis.
Speaker 1 (38:58):
That is the thing about this disease. It's so great.
Speaker 2 (39:01):
You call it an ambiguous loss, right.
Speaker 1 (39:04):
It's just great to know, like when did this disease
start to rear its ugly head? And like where does
my husband start to stop?
Speaker 2 (39:14):
I don't know.
Speaker 1 (39:15):
You know what I hear, and I know now I'm
going back to Alzheimer's. But like with dementia, what I've
learned from doctor Richard Isaacson is that dementia can set
into your brain ten twenty thirty years before you even
receive a diagnosis. So how do you know?
Speaker 2 (39:34):
So I don't know.
Speaker 1 (39:36):
It's really hard for me to answer that.
Speaker 2 (39:38):
I think when I first met you, we talked about
having an extended family. You know, Bruce has a very
good relationship with his ex wife, dem Moore and his
daughters from that marriage, and I know that you all
have really worked hard to help each other. I also
(39:59):
know that ultimately it does fall on your shoulders because
you are Bruce's wife. That's right, But tell me about
that family circle that exists and how that has been
helpful to you, because it might model behavior for other families.
Speaker 1 (40:19):
I mean, listen, I mean I think if you know
of Bruce and Demi and their divorce and how they
handled that and you know, always putting their children first
was just of the utmost importance, and how they've been
able to sort of come out the other end of
you know, having a relationship built on respect and admiration.
(40:40):
You know, they really set us up for success, right
Like you know, if we could just start there, you
hear about people divorcing and that's already you know that
because turn can turn into a hot mess. But I
think that what the foundation that they've laid has really
helped us to be able to walk now this path
(41:01):
where at the end of the day, you know, we
all have our own special, unique relationship with Bruce, and
we all show up for him just to be able
to continue to support him and love him. And you know,
everyone has their own way of doing that, and you know,
at the end of the day, I think what's been
beautiful is that they respect what I'm doing, how I
(41:27):
care for Bruce, and they come in to be able
to support that.
Speaker 2 (41:31):
But you are the captain of the ship.
Speaker 1 (41:34):
Yeah, you know, this is happening in our home, and
we have two young children, and I'm a control freak,
So yeah, so there's that, But yeah, I mean they
I'm so blessed because I know there's so many families
(41:54):
that even couldn't be united from the start, but can
the idea of care and what that care looks like
and can get.
Speaker 2 (42:02):
Very hard, oh, very hard. I think situations like this
I've seen tear families apart, with resentment, people feeling like
one person is carrying the lion's share of the responsibility,
anger when people don't live nearby and aren't carrying their weight,
(42:24):
and it can really be an incredibly divisive and difficult
time for families. And you know, gosh, I think everyone
listening or watching this has seen a situation like this,
or when you know an aging parent or an alien
(42:44):
parent or spouse. Really it's mostly parents with the adult children,
I think. But it does create a lot of animosity
among people. And this is a different situation, I think.
But you could see kind of some anger surfacing. But
you all have not gone down that road.
Speaker 1 (43:06):
No, we haven't, and I don't see us if we've
gotten this far. I think I think we're good. I
think we're golden.
Speaker 2 (43:13):
You talk about the mood you bring into the room
as your emotional WiFi, which I love that term. But
to explain what you mean by that.
Speaker 1 (43:21):
Yeah, I mean our family. Our people are feel our energy.
You know, especially if someone going through the dementia journey.
If you are bringing the high stress and anxiety and
worry and anger and all the things into that room,
your person is going to pick up on that, like
(43:43):
your children will, right. You know, they are connected to
our emotional WiFi and mine was had a really spotty
connection for a long time, and you know, my husband
could feel it, my children can feel it. This is
you know, iired of having support. You know, I think
people don't understand what is happening behind closed doors. You
(44:07):
know how hard it is for caregivers. How Hi, It's
just such a high stress position, So it's very normal
for our wi fi to be buffering.
Speaker 2 (44:27):
Hi. Everyone, it's me Katie Couric. You know, if you've
been following me on social media, you know I love
to cook, or at least try, especially alongside some of
my favorite chefs and foodies like Benny Blanco, Jake Cohen,
Lighty Hoyke, Alison Roman, and Ina Garten. So I started
a free newsletter called good Taste to share recipes, tips
(44:47):
and kitchen mustaves. Just sign up at Katiecuric dot com
slash good Taste. That's k A t I E c
o u r ic dot com slash good Taste. I
promise your tas spuds will be happy you did. You
(45:11):
talk about sort of making sure that you take care
of your health, and a lot of people use the
analogy of putting your oxygen mask on first before you
help your children. And you know, there's pretty stark data
about the impact caregiving has on people's sell, isn't there.
Speaker 1 (45:32):
Yeah. I mean, Bruce's neurologist gave me this really incredible
wake up call that thirty percent of caregivers are dying
before the person that they're caring for. It was startling
because then you think that forty percent of caregivers they're
not able to make their own medical appointments right because
they are the last on the list, or they don't
(45:55):
have support at home to be able to go get
their colonoscopy, their a graham, they're just general check up.
So that was just a startling statistic to me. It
was a wake up call and I was so happy
it's startling as it was, it was really a wake
up call, and I was so happy that this neurologist
(46:15):
had told me that so that I could really just
get back into my senses of like, Okay, I'm not
going to have our children lose both of their parents.
Speaker 2 (46:24):
And not taking care of myself doesn't do anybody any good.
Speaker 1 (46:27):
And how can I then continue to show up for
the person that I love if I'm not caring for myself.
So I really needed to just to figure out a
new way to be able to start making my doctor's
appointments again and exercising, my goodness, just exercising, eating better,
(46:47):
you know, trying to get better sleep, which was very
difficult as a caregiver to do that. But I just
think that it's important to just put these things on
our radar and again to be able to just aren't
calling in the support so that you know, you can
go to your doctor's appointment, you know, like I have
a medical book for myself now of that you know,
(47:09):
whenever I am making a doctor's appointment for Bruce or
our daughters, that I always just go back to my
medical book to make sure that like, okay, this was
when my last pap smear was and this is when
my last you know, dental appointment was so that I
can also just keep an eye to make sure that
I am not forgetting myself.
Speaker 2 (47:30):
You know, we talked about some of the early symptoms emma,
and it makes me think, you know, early detection for
cancer is so critically important because if you can eradicate
the disease before it spreads, you know, your survival rate.
It's just really the difference between life and death oftentimes.
But with FTD, knowing you have it early, there still
(47:53):
isn't much that can be done in terms of modern medicine.
Is there no.
Speaker 1 (47:59):
I mean, you can manage the symptoms with medications, but
there is no treatment for FTD. And I think that
is why I think this awareness piece is so important,
because we want people to be diagnosed earlier so that
they can get into the clinical trials that are there.
(48:22):
You know, they're really concentrating right now on the genetic families,
because usually with genetic families, this is like it's running
in that line, right you see a grandparent to a
mother to you know, and you can get tested. I mean,
that's a whole other it's not my area, but you know,
(48:44):
if the person wants to get tested to see if
they might have this gene, then that is when these
trials really come in two hands into place, so that
they can now be in the trial to sort of
help as they marched through to the disease.
Speaker 2 (49:03):
But also I think increased awareness can lead to more funding, right,
And I think the brain has been sort of as
a loss leader in terms of medical research, primarily because
the brain is very hard has been very hard to study,
you know, like other parts of the body, you can't
(49:24):
get tissue samples for example. And you know, now I
think with modern technology and brain scans, there is much
more we're learning about how the brain operates. And then
there's the bloody blood brain barrier bloody meaning damn blood
brain barrier that prevents medicines from reaching the brain, which
(49:47):
is a whole other issue. But do you feel like
there's exciting research going on with all these forms of
dementia because I know that it it's been a really
tough nut to crack all of these diseases.
Speaker 1 (50:04):
I think we're so much closer than we think, you know,
I think that there's so much more talk and awareness
around brain health and that you know, there are actually
positive things that we can be doing today to care
for our brain that can really sort of change possibly
change the outcome, or at least if it's not going
to change the outcome, at least it might hold hold
(50:26):
it back a little bit so that we wait for,
you know, a medicine to sort of come in to
be able to hopefully cure reverse, slow down, whatever that
might be. I was at a conference in Amsterdam last
year called the is FTD and it brought together you know,
seven hundred and fifty researchers, scientists who are working in
(50:48):
the FTD field I know, all around the world and
to be able just to hear the exciting progress, you know,
progress is being made, and I want people to know that,
you know, people aren't just sitting there twiddling their thumbs.
You know, people are really they they are really rolling
up their sleeves and I am really hopeful that there
(51:10):
will be a breakthrough and that you know, what I
just hope and want for the next family is that,
you know, to go into that diagnosis appointment and instead
of hearing that there is no hope, there is nothing
that we can do, that they'll say, here is here
is a treatment. Here is something, here is some support.
(51:33):
You know, that is just what I want to see.
This just this different outcome. And I really do believe
that we we are getting there. I have hope in
that I trust that I know this community and and
they're in it to win it.
Speaker 2 (51:50):
I know that you talk about what you can do now,
and the Mediterranean diet is something that's really important. I
interviewed doctor Bruce Yankner from Harvard Medical School, who wrote
a paper that was published in Nature on August sixth.
You can tell I just interviewed him to say that
my head, and it was fascinating the role of lithium,
(52:14):
sort of this organic lithium that exists in your brain
and the fact that these amyloid deposits and these other
protein taul clusters, you know, that they absorbed the lithium.
And they were able to do autopsies on brains at
Institute in Chicago who they had tracked with Alzheimer's and
(52:36):
they saw this lithium depletion in most of these brains.
And when they gave in mice models lithium to the mice,
a specific kind of lithium, their memories returned and it
was really amazing and exciting, and now he's trying to
(52:58):
do clinical trials on human incredible, but he is worried
about NIH funding. And I'm sure that's something that you've
been reading about with a lot of alarm as I have,
since I care so deeply about medical research, specifically cancer research,
and I just attended a rally for medical research in Washington,
(53:19):
D C. This week, and I cannot understand why our
most valuable resources are fellow humans, could not be seen
as important to keep them healthy and to come up
with better treatments and a cure for many of these
diseases that take people way too soon.
Speaker 1 (53:41):
Yeah, I mean that has been really hard. It's been
a hard pill to swallow to watch that, you know,
we again like we're we are. There is such momentum
and to see that the possibility of that being taken
away is heartbreaking for so many.
Speaker 2 (53:59):
Families because as families you mentioned where they say there's
something we have for your loved one, you know, without
medical research, without these scientists, without funding, they're not going
to hear that, you know.
Speaker 1 (54:16):
I doctor Bruce Miller from UCSF, you know, has said
that by the year twenty fifty, dementia cases are going
to triple. You know, that's just a lot of people,
and we really need to think about funding, continued funding.
Speaker 2 (54:33):
And the societal impact of that, because it's not just
this terrible situation for an individual. It branches out to
their family, it branches out to productivity, you know, all
kinds of economic considerations when you think about this and
healthcare costs. So it is a huge, huge issue.
Speaker 1 (54:54):
Especially when you think about Medicare and Medicaid and all
the cuts, and you know, it was already the services
were already lacking and complicated to try and go through
the insurance to be able to try and find support
that you need or services that you need when you're
caring for someone with dementia, Like what is that going
to look like? Now? You know? And I think like
(55:16):
that is you know again, I'm like in the midst
of our journey. I am learning as I go. I
am really trying to learn how to use my voice,
how to become an advocate. But you know, my eye
is on the prize of like how do I get
to DC and support all the other people who are
there trying to raise their hand of like where's the
(55:39):
support for caregivers? You know where is that and this
is really such an issue and I would love to
be a part of that conversation.
Speaker 2 (55:51):
Well, I think you already are and will continue to be,
and I think many people look to you as a
real leader, Emma in this whole field. Although it pained me,
you know, I know you have gotten some criticism, and
I wondered if and people criticized because you made a
decision to move Bruce to a separate residence where he
(56:15):
could get round the clock care, and you know the
reaction has been I think must be very painful for
you in some ways or not. I mean it would
say things like Hemming admits to shifting Bruce to a
second residence and you know, welcome to American twenty twenty five,
(56:36):
where everyone judges everyone for everything. But it was painful
for me on behalf of you. Thank you to read
these things and to see people make judgments about your decisions.
And I'm wondering how you kind of took that in
(56:58):
and if it pained you or you were prepared for it,
how did you feel about that?
Speaker 1 (57:04):
I mean, this is twenty twenty five. I knew by
talking about this and being open and just honest and
the truth of what is that it would of course
be met with criticism and judgment. I had prepped myself really,
oh yeah, prepped myself for knowing that, And it was
kind of interesting to see kind of like the rollout
of that, like a social experiment, almost, to be able
(57:27):
to see just how people are so quick to judge
a caregiver and the decisions that they are trying to
make that are hard. You know, these are hard decisions,
and you know, again, dementia plays out differently in each person,
and I think that as caregivers, we need to do
(57:49):
and make decisions that are the safest and best for
our person and our family. And this was the best decision,
hardest decision, but the right one for our family.
Speaker 2 (58:07):
Did you feel like you had to justify your decision
after the criticism?
Speaker 1 (58:13):
No? You know what was interesting because I wanted to
really be able to talk about it in the book,
which is something that I did. And what I realized
is I was writing that I had so much anxiety
around talking about it, but I also knew how important
it was to be able to control our narrative before
this rolled out and got ahead of us, and.
Speaker 2 (58:33):
Also how important it was to be brutally honest, I imagine.
Speaker 1 (58:36):
Well, also, like the reason why I also did it
was because I wanted someone else to feel validated and
seeing in their decision when it comes time for them
to have to make a hard decision to be to
place their loved one in a care facility. You know, granted,
you know this is our second home, this is different,
(58:58):
but still, you know, again people don't understand all the
needs that aren't met behind closed doors. You know, now
Bruce's needs are met one hundred percent of the time,
and our children are in a home now that supports
their needs. So you know, this is really a win
win scenario for us. I think that, like, I'm not
(59:21):
taking a vote on it. I don't need all the
public opinion about it. You know, if you don't have
the experience, you don't get to say, if you are
not in this day in and day out, you know,
you have to do the best decision, the right decision.
And you know, going back to the chapter of that book,
you know, I did feel like I was over explaining
(59:41):
and defending and like this is why and dah dah,
da da dah. And over the course of a couple
of months and going back to that chapter. I'm like, no,
what am I doing? You know, I know that this
was the right decision. I don't need to defend this.
People are going to have an opinion. They are going
to judge it either way. I'm going to get judged
(01:00:01):
no matter what. But caregivers get judged, and I think
that just unfortunately comes with the territory, and I think
that narrative really needs to be changed. I mean, it
was also interesting for me to see other caregivers judging me.
You know, I would have never done that to my person,
or you know this, you should do it like this
(01:00:23):
or do it like that. Oh, you know, I'm just
I'm doing We're all doing the best that we can
in an impossible situation. And I know and see that
this was just the right decision for us, and we
all just have to do what is right for our family.
Speaker 2 (01:00:44):
I've always appreciated, I think I mentioned earlier that you've
always been so upfront and aware of the fact that
so many people in this country who find themselves in
this position simply don't have resources. Is there anything that
you hope will be done about that as a result
(01:01:07):
of being public about your experiences? Is there are there
policy changes? Are there ways that we can support these
sixty three million you said caregivers in the United States?
Speaker 1 (01:01:24):
I mean, I think it's important that we're electing officials
that are thinking about caregivers and that they are at
the top of mind because at some point in our
lives we will need care or we will need to
care for someone else. So it's important that we are
looking at that. And I am sure again that there
(01:01:44):
are policies and things and stuff, and I am going
to continue to learn and grow and figure out how
how to use my voice so that caregivers can be
supported because they are not again, they are uns they
are unsupported. They are doing it on their own, and
it is not sustainable. I mean, you see those statistics.
(01:02:08):
It is not sustainable. So how are we caring for
the caregiver? I mean, there has to be a big
picture here to be able to help caregivers who don't
have the time, the energy, the resources, the access. And
I am just one voice of many.
Speaker 2 (01:02:26):
Do you ever get pissed and just feel like, I
mean it's perfectly normal, like why me, why us? This sucks?
You know, I can't believe it. I'm pissed.
Speaker 1 (01:02:41):
Yeah, I was early on, I think like why, yeah,
why us? Why him? Why our daughters? Why me? And
now I'm in this position of like, I can't believe
that I am this person? Now, who is you know,
just such an introvert like I you're shy?
Speaker 2 (01:02:59):
I am so shy. You don't seem as shy as
you were when I first met you.
Speaker 1 (01:03:03):
No, I'm like getting my bearings with it. I'm realizing that,
you know, like this conversation, it's bigger than me, it's
bigger than my husband, and I need as Bruce would say, Emma,
you got to get out of your own way. And
I'm just trying to get out of my own way
and just trying to do the best that I can
with the brain that I've been given. You know, I'm
a high school dropout. I can't believe it's me. I
went off to like become a model, and you know,
(01:03:25):
I just can't believe it's me. I can't believe it's me.
I can't believe that I am the one that wrote
a book that you know, really is such a simple
It's not that it's it is simple. How is there
this gap? You know? How is there this gap that
has not really been fully you know, filled. You know,
(01:03:46):
how are we walking out with no support? You know?
And I just i can see these little tiny gaps
and I'm just trying to just trying to figure it
out in real time.
Speaker 2 (01:03:56):
I think it's incredibly selfless of you, because I think
a lot of people would kind of hibernate and deal
with it in an uber private way. But I think that,
you know, I always think sometimes you find your purpose,
and sometimes your purpose finds you and it's not necessarily
what you wanted it to be, and yet you know,
(01:04:22):
you find yourself stepping up and filling a need and
fulfilling a role that you never anticipated, but you feel
is more important than just you and your own situation.
And it's it's hard to do, but it's really important,
and ultimately I think it is it's really gratifying and
(01:04:45):
fulfilling to feel that somehow, some way you're helping someone else.
Speaker 1 (01:04:51):
I mean, I do really feel like I've found my purpose.
And I do think, yeah, sure I could have remained
I could have remained private about it, but that was
honestly again, like that wasn't helping us, It's not going
to help someone else. So this being able to advocate,
being able to just share and now be in rooms
(01:05:13):
with people that again other caregivers. It's so meaningful and
I am really it's in a way it is helping me,
you know, it is helping me heal, and I am
so grateful for that. I'm so grateful for these opportunities
that I'm being given and to be able to grow
(01:05:35):
from this experience. It's saving me.
Speaker 2 (01:05:41):
Well. I appreciate you so much. I appreciate you not
only sharing your story, but through sharing it, moving science
forward faster, through a greater awareness and being the public
face of a disease that I think often kept in
(01:06:01):
the shadows and surrounded by unnecessary shame and stigma and stigma.
And I know that so many people appreciate you too
and appreciate what you've done and the fact that you've
written this book, The Unexpected Journey, Finding strength, hopeing yourself
(01:06:22):
on the caregiving path. Am a great to see you again.
Thank you for coming in. I really love talking to you,
and I still believe what I found when I first
met you, that you just emanate grace and intelligence and
now a new kind of strength.
Speaker 1 (01:06:40):
So thank you, thank you for having me Katie Thank you.
I appreciate it.
Speaker 2 (01:06:46):
Thanks for listening everyone. If you have a question for me,
a subject you want us to cover, or you want
to share your thoughts about how you navigate this crazy world,
reach out send me a DM on Instagram. Love to
hear from you. Next Question is a production of iHeartMedia
and Katie Couric Media. The executive producers are Me, Katie Kuric,
(01:07:08):
and Courtney Ltz. Our supervising producer is Ryan Martz, and
our producers are Adriana Fazzio and Meredith Barnes. Julian Weller
composed our theme music. For more information about today's episode,
or to sign up for my newsletter, wake Up Call,
go to the description in the podcast app, or visit
(01:07:29):
us at Katiecuric dot com. You can also find me
on Instagram and all my social media channels. For more
podcasts from iHeartRadio, visit the iHeartRadio app, Apple Podcasts, or
wherever you listen to your favorite shows.
Host
Katie Couric
Popular Podcasts
On Purpose with Jay Shetty
I’m Jay Shetty host of On Purpose the worlds #1 Mental Health podcast and I’m so grateful you found us. I started this podcast 5 years ago to invite you into conversations and workshops that are designed to help make you happier, healthier and more healed. I believe that when you (yes you) feel seen, heard and understood you’re able to deal with relationship struggles, work challenges and life’s ups and downs with more ease and grace. I interview experts, celebrities, thought leaders and athletes so that we can grow our mindset, build better habits and uncover a side of them we’ve never seen before. New episodes every Monday and Friday. Your support means the world to me and I don’t take it for granted — click the follow button and leave a review to help us spread the love with On Purpose. I can’t wait for you to listen to your first or 500th episode!
Stuff You Should Know
If you've ever wanted to know about champagne, satanism, the Stonewall Uprising, chaos theory, LSD, El Nino, true crime and Rosa Parks, then look no further. Josh and Chuck have you covered.
The Joe Rogan Experience
The official podcast of comedian Joe Rogan.