I just think like Bruce is just very present in his body and I just think that there is something so lovely and wonderful about that. He's not thinking about what happened yesterday or what's happening in the future. He is just here very grounded in today and I love that and I love being able to experience that
with him.
My first impression of Bruce was just so charming, so funny, so down to earth, so handsome. You know, Bruce wasn't someone that was on my radar. I wasn't a big Bruce Willis fan, per se, but during that time of getting to know him in Gunner Peterson's gym and just, you know, just seeing what again just like what a downto-earth person he was. I really took to him. He was very easy to talk to, very likable, always asking questions about me and just always like inquisitive, just wanted to know, just very easy to be around.
He asked me to go on this trip and I wasn't really thinking that was what I wanted to do at that time. I was with a friend of a friend of mine, Ali, and we had plans to go elsewhere. And he was like, "Yeah, sure. Go elsewhere, but then you know, come out and um you know, I'll be there with, you know, my three daughters and my ex-wife and her husband and we've got friends there and just, you know, we have a villa for you. Come, you know, come come on." And I was like, "Whoa, that just seems like a lot." But very it's just very Bruce of him. I had said to my friend Ali, I was like, I don't know. I think I'm going to pick this up in the new year. And he was like, "What are you doing?" He's like, "He's being a gentleman. He's, you know, his family's going to be there. He's putting us in another villa. Like, his
intentions are good. Why don't you Why don't you go? Why don't we go?" And
that's what we did. And on that trip, you know, I just got to see this other side of Bruce who was really a family man. I just loved seeing how he was with his three daughters, how he was with his ex-wife and her husband. And again, just a really likable, fun, downto- earthth guy. And on that trip, you know, I ended up falling for him really hard. So that was the start of our of our love story.
He is such a protector. Um, he is my biggest fan. You know, our relationship was not complicated and there was just an ease about it and I knew really quickly, we knew really quickly that that this was it and we wanted to be in it for the long haul. We got married in 2009 in Turks and Caos in um Parake and it was a total of 13 of us. So just very close family friends and that was it. Uh we married on a rock at Sunset. Keith Richards was our band. He played at our band as our wedding band because he lived in a couple houses down the street. So that was lovely. And then Rumor was able to sing as well with Keith on the guitar and Steve Jordan played um he's a drummer and he played on a cardboard box I think it was. It was very lovely. It was just a a really joyous, very easy, casual wedding. No real frills and it was just with the people that we loved and wanted to, you know, celebrate that that time with.
Being able to come into that family, I
think there was so, you know, you wonder
how how does this work? But it there was
something about it that was very it was
they came and it was very easy. His
three daughters are just lovely, warm
human beings that I just love and
admire. And for them, I think the most
important thing from what I've heard
from them is that they just always
wanted to see their dad happy. um that
has always sort of been sort of in the
forefront of their minds. And I just
feel really lucky and really blessed to
have this blended extended family. It
works really well. We're really lucky
and you know, we work at it. You know,
we make sure that we communicate and um
and we show up for each other. So lucky.
Mabel was born 2012 and then Evelyn was
born 2014. I think during those first
couple years, Bruce was working. You
know, we were he was very busy. He was
shooting Die Hard 4 at the time. We were
in Budapest with Mabel when, you know, I
think we got on a plane four weeks after
she was born. And we were in Budapest
for like a good 6 to 8 months. From
there, he went off to go shoot Red and
we were in London and Canada. So, we
spent a lot of time actually on the road
um in those earlier years. And then when
we had Evelyn, we were I think trying to
settle like just kind of root a little
bit more. Um and then we were in Los
Angeles and moved to New York. So life
was busy, life was full and fun. You
know, we love being able to be with
Bruce while he was working. And then at
some point we were able just to sort of
stay put a little bit more at home and
then he would go off and work and then
we would go and meet him at work. But
yeah, I mean, life was full, busy. There
was a lot there was a lot going on in
those early years.
Oh, no.
He's such a great dad. And I saw that
with his three older girls. Um, and with
the younger ones, if they're swimming in
the pool, like he would come home, dive
in with his clothes on just to get a
laugh. And it was just like fun dad.
Just a great girl dad, you know? Like I
couldn't even imagine him with a son. I
just I don't even know how that would
work for him. He's such a softy. Loves
his girls. Loves being surrounded by all
of them. Um he's he's like the iconic
girl dad.
FTD doesn't scream at whispers.
And you know, I didn't really know
anything about young onset dementia
prior to Bruce getting his diagnosis.
It's very gray to know like where did
Bruce stop and where did his disease
kick in. It's hard to know, you know,
and I hear that from a lot of caregivers
as well. It's just very hard to sort of
pinpoint and especially for the
diagnosis that Bruce has, which is
primary progressive aphasia, which is a
subtype of FTD. FTD can affect people in
different way. There's three different
subtypes. There's one that affects
behavior. There's one that affects
speech, and then there's another one
that can affect movement. So for Bruce,
it was speech. And you know what I
started noticing was that his stutter
started to come back. I would say that
was kind of the start of that and
um and not really understanding why and
just kind of being like okay well I
guess that is that is what what it is.
things that he was saying or the
conversations that we were were having
that weren't really aligning anymore.
And you know, things just got very
cloudy in our relationship, which just
so wasn't like our relationship. You
know, things just started to shift
gradually over time and it was just hard
for me to put my finger on what and why
and what was happening. And I never in a
million years thought that was a symptom
of um FTD or young onset dementia.
I was happy to get any kind of diagnosis
of anything. I didn't know what a fasia
was prior to receiving that initial
diagnosis which was a symptom of a
disease, not actually a diagnosis. But
once we found that out, um, it sort of
helped us to sort of wrap our head
around what was happening. It wasn't
until later that year when we got the
official diagnosis of frontto temporal
dementia. I'm sure the doctor was
explaining what FTD is, I couldn't hear
a single thing. You know, I had like
pins and needles going through my body.
My ears were wafting.
You know, it was just a lot. And I'm
sure he was feeding us information, but
all I heard was that just, you know,
check back in. Here's a pamphlet. The
unfortunate thing about it is that there
is no treatment and there is no cure for
this disease. And you know, being given
that diagnosis and then sent on our way
with no support, no help, no nothing uh
was really traumatic. It's not just
happening to us. this is how many people
are receiving their diagnosis.
There was a sense of relief of
understanding like, oh, okay, this isn't
this whole time it really hasn't been
my husband. It hasn't been the person
that I married. And um this disease was
taking parts of his brain is really what
it came down to. And you know, once you
hear that, I mean, you just I just softened and what was what came was just a flood of um just a realization and an
understanding that like he wasn't doing
any of this on purpose. This was his
disease. It wasn't Bruce. I think the
reason for wanting to share this part of
the story is because I have heard so
many other couples that have gone
through this where they just can't
figure it out. they it's like you're
banging your head against a brick wall
and you're just like where is the
miscommunication coming
within our relationship and you think
it's a marital problem and again in fact
it's a symptom to a disease what I
realized was that I wasn't that wasn't
only happening to me that other people
were experiencing the same thing where
they were even contemplating divorce and
some had gotten divorced because they
just didn't realize um that this was
FTD. You just don't think about that for
you know FTD is the most common form of
dementia for people under the age of 60.
It strikes young 20s, 30s, 40s, 50s and um you're not
thinking about dementia.
Doctors aren't thinking about dementia
in those years. So it's very confusing.
It is very confusing for people,
including myself. It's just not on
anyone's radar, which is why I think the
awareness piece of being able to come
out with Bruce's diagnosis and to be
able to talk about it um is so important
so that people can take less time
getting to a diagnosis so that the
person who is diagnosed can be supported
and then this caregiver can be supported
because families fall apart prior to
that. So early diagnosis is key for
families.
When Bruce was diagnosed, the girls were
eight and 10. what I have learned from
experts and specialists that I have been
able like so blessed to work with um to
help me because I you know I I didn't
know I mean you wanna you want to shield
and protect but what I realized um and
what I had learned is that it's really
important when they ask questions you
tell them you tell them the truth you
tell them the answers that's age
appropriate and I think that has given
them a sense of safety to understand
like what is happening I'm not trying to
put smoke and mirrors around them with
it. And I think being truthful and being
honest with them, even though it's been
incredibly hard, um, is been very
beneficial for them in, you know,
learning how to support their dad
through his disease.
Being on this journey early on for me, I
was very isolated. I was too scared to
say anything to anyone. I didn't know
what I would say to someone. I didn't
know what I would flag with a doctor. I
just didn't know how to talk about it.
So, I ended up becoming
very singular in this and it felt like
what was happening was only happening to
us. Um, and I think over time what I
what I realized and the relief of
getting to a diagnosis to then be able
to realize that it would be so much it
would be beneficial to be able to talk
about this diagn diagnosis and then to
be able to raise awareness about this
diagnosis so that people can get to uh
the doctor sooner, be diagnosed sooner
so that they can get into clinical
trials that are actually available. So,
you know, it was like twofold, right?
Like we knew the importance of being
able to come out with our family
statement and the why because of it. Um,
I was then able to just come out of my
come out of the darkness of it. And I
really wanted to be able to connect to a
community. I mean, I felt like I was
acquiring so much incredible information
from all the experts and the specialists
that we were able to work with.
um you know we have access and many
people do not they do not have the time
they do not have the energy to seek this
out and I was able to do that and I had
this information and I know how hard it
is for caregivers and I know what their
days look like and I just wanted to be
able to take the insight the wisdom
of parts of my story and be able to take
what these experts have given to me to
be able to put that all into a road map
and have a type of guide. I really wrote
the book that I wish someone would have
handed me on the day we received that
diagnosis. We were sent away with
nothing. Not even one resource. Nothing.
And I just find that wild. But that is
what is happening when people are
getting diagnosed. They are not leaving
with anything. And I just think that is
not right.
And I just wanted this book to be
supportive to the next caregiver. And as
much as I, you know, wrote this book for
the next caregiver, I am that caregiver.
So I am using this book myself as my own
sort of guide um and reminders, you
know, I open this book and I read
something and I think, oh yeah, like I
needed to hear that. I mean, I think
that's the beauty of this book. You
don't have to read it from page one to
the end. You can just open it up
anywhere and gain some insight. Um, so
yes, I hope it helps someone else and I
um, but it is also helping me and I just
wanted to be able to connect to a
community of people that understood me
as well. You know, just because my
husband is Bruce Willis, it's just the
the caregiving experience and the
feelings that we feel are very
universal.
And um and it's important for me to be
able to build that community out for
myself and to be able to connect with
other caregivers. And um I think that
there's importance in that and there's
beauty in that.
I think early on life felt very dark, you know, very one sort of note of just grief and sadness and there really felt like there was no hope in any of it. It was so bleak. But I feel like again like being able to connect to a community, being able to raise awareness, being a
there's been so much beauty that has
come from it. And I think early on, no
one ever told me that I would be able to
sort of bring some light and joy into
our world. I did not know that would
ever be possible. But my hope is that in
this book that caregivers will just sort
of open their like take their blinders on off. I had
mine on for so long and I was able just
to sort of start opening them up a
little bit to like allow joy and happiness to come back into
our world and where the grief and the
sadness and the trauma is just here all
the time. I have learned um that it's
okay for me to also enjoy our life
because Bruce would want that. Bruce
would want that for me and for our kids.
Um to be able to just not wallow in the
sadness of it, but also to be able to
rise to it. Um so, you know, being able
to write the book was extremely healing.
I loved every minute of writing that
book. Um, and I'm so excited for it to
finally be birthed into the world
because I do feel like it will like it
will help someone.
I feel like our love story has only
grown and developed more. Um, you know,
the way I feel for Bruce is
it is, it sounds woowoo, but it's just
this on a more sort of cellular level. I
love this time with him. You know, time
is so fleeting, and I just love um
just being able to be present with him.
Bruce is very present. I am so grateful
that he is very much here, very much a
part of our daytoday. I think there has
been so much beauty just to be able to
meet him where he's at, to um enjoy this
time with him. I think that, you know,
Bruce has this variant called PPA where
you lose your language and, you know,
um, but sometimes love does not need
words. And I can just sit there with
Bruce and look at him and we look at
each other and we laugh and smile and
and and and that to me is more than more
than anything.
[Music] English (auto-generated)
