259 💖 Wake Up Maggie: Katie Prentiss on Caregiving, Dementia Awareness, and Finding Purpose

Episode Transcript
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>> Katie Prentiss (00:00):
We can't control whether we or someone
we love have a disease. But we
can control how we're present, how we
care for ourselves, how we care for them,
how we live in the moment we're in.
We can control our gratitude. You
know, it's like all of those things that, um,

(00:21):
that give us that hope and healing, I think,
is like, focus on those things and
try to, like, open and take a
deep breath on the things that you have to accept you can't
control. That's what's helped me so much in
this journey.

>> Wendy Valentine (00:36):
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Hey there, midlife warriors. On today's
episode, I'm thrilled to welcome the incredibly
talented actor, filmmaker, and storyteller,
Katie Prentice. Katie's journey is nothing
short of inspiring. From navigating life as a
mother, English major, and portrait photographer,

(05:19):
to finding her true calling as an actor and
filmmaker, she's here to share her
heartfelt project, Wake Up Maggie. A
beautiful love letter to caregivers and a heartfelt story
raising awareness about dementia. Inspired by
her own experience of losing her mom to
dementia, Katie's passion for storytelling,

(05:39):
both on screen and behind the scenes,
shines through her work. And her personal journey of
healing and transformation is sure to resonate
deeply. Let's dive into this powerful
conversation about caregiving creativity and
embracing life's unexpected awakenings.
Please welcome, Please welcome. Please
welcome. Please welcome a Katie to the

(06:01):
show.

Uh, and here I am. Hello.
Thank you for that
welcome. I'm so glad to be here
with you today.

So good to have you here. You know, I think I must have jinxed myself
earlier because we were talking about, like, you know, when you get to this
stage in life, you don't really care if you, like, trip over
your tongue and you say something stupid.
You're feeling down. It's like, ow, ow. Like
the old one. You'd be like, oh, my God, I can't believe I messed up.

Oh, right out.

I'm like, no, keep it.

Yes. It's relatability. Right? We don't want
to edit out the stumbles and the wrinkles and all the
things. Be human.

Keep it there. So nice to have you here. Yeah. You were,
like, really good.
So there's. There's. There's so much I want to
know. Of course, we talked for, like, 20 minutes before we even
started. Um, but
mostly, I want to know your story. Take us
way back. And I know that you have this story. Story

(07:02):
with your mom that I would love to hear more of. And then we'll
kind of start diving more into Wake Up,
Maggie.

Yeah, I mean, I will say,
like, life was moving.
I was moving forward in life in a way that
felt beautiful and full and rich.
Um, have. We have four children.
I was building a career in portrait
photography. Just doing our thing.
Like, it. It all felt, like, really good and

(07:31):
settled until my mom, at a really
young age, started exhibiting really bizarre
behaviors and, like, um,
confusing situations.
We, my siblings and I, were all like, what is
going on with her? So at
62, a few years after
a lot of those things were happening, we got a

(07:53):
diagnosis that my mom had frontotemporal
dementia, uh, FTD for short.
Is. It's so much easier to say if that's fine.
Ftd. Ftd. Yes. People
might know, um, it from Bruce Willis's
diagnosis or Wendy Williams. Both of them
were, um, public with their diagnosis in the

(08:14):
past number of years. So my
mom was diagnosed with ftd, and
in those years, my
sister took care of her and moved her into their home for
about three years. And then we decided
to move her to Oregon and take care
of her in her final almost three years.

(08:34):
Um, that journey
was, you know, really rocked my world, being a
caregiver to her. Um,
my children were all young, like, in
elementary school, and all of a sudden, I was trying
to figure out care for my
mother, who was becoming

(08:56):
less and less of herself right in front of me.
Um, I
lost my mom eight years ago to
FTD in this. So this was
2016. And
even still, after losing her, I
felt okay. Like, I'll figure

(09:16):
it out, you know, you process through your grief and you, like, have to
move back into life. And, um, all
of a sudden you don't have this caregiving that you're doing
anymore. It's just. It's like a bizarre change. But
I think the thing that really impacted me was
when we are close to death like that, it makes
us evaluate life in a different and more deep

(09:37):
way. And I started thinking
about how I wanted to feel
alive. I wanted to feel alive.
I wanted to do things that were exciting and new and try
new things. So fast
forward, I was like, I want to be on set. I
think it'd be really cool to be on a set and see a show and

(09:57):
do a movie. And I was like, maybe I'll start a bucket list and that will be
number one. And, um,
because of that idea, I'm trying to
give a really, like, fast snippet of, of my
story. We got time
because of that idea. I ended up auditioning for
a role in a film. I saw a casting notification

(10:17):
on a Facebook group and I submitted,
I auditioned, and then I
booked it, which feels, like, so
bizarre and definitely
magical, um, because it doesn't happen
like that very often. Yeah, booked
that role. Thought that I would be like, oh,
that's even cooler than what I imagined for my

(10:39):
bucket list.
But while I was on set, I was like,
I am obsessed with
this. Um, like you,
I had been a solo entrepreneur for years and years and
years. And. And I love people.
And I think while I like working for myself
so much, I also

(11:01):
always kind of miss, like, the collaboration
and, like, the creative community
that you can have when, like, I'm like, I want to sit at a table
and, like, brainstorm with people, you know, like,
uh, draw and. Right, yeah,
like, have people, like, come together on
this. Well, so that's what set felt like. I was like,

(11:21):
we're all telling the same story
and, like, playing our parts. This is
incredible. And because I had spent so many
years behind the camera finding light,
engaging, um, you know, my portrait
clients to, like, evoke a feeling or,
like, feel at ease. It
all just kind of came together for me in that

(11:44):
moment. It just felt like this world of magic.
And, um, then my life was changed.
I was set, set on a course that was different than what I
had always been doing. Started figuring out
how to, ah, act like, you know, becoming
an actor is like, I need training, I need to
be in class. I need to figure out this industry.

(12:05):
What is it like to work in it. Um,
and then I started making films. Um,
my first film I made in 2020, right in the middle of the
pandemic. So. So my story is from
this full life to losing my mom,
to wanting more life and. And
finding it through acting and filmmaking.

(12:26):
So it's been wild.

Yeah. You know, there's that the cliche of life
is short.

Yeah.

But I don't know about you. It's like seeing
someone pass away that when
you think that they're gonna live until they're, you
know, 80s, 90s.

Yeah.

And then they go so quickly.

Yeah.

Does make you realize. Yeah. Life is so
precious.

It is. Yeah.
That's true. You know.

Yes, I know.
I know. So tell us
about your mom. What was she like before
her diagnosis and before she started to
decline? And then tell us how.
How that kind of. How she changed.

Yeah.

Process.

My mom was, like, such a
classic, uh, just, like, wholesome
mom. Like, I. I think of her as, like, she was,
um, uh, DIY
make from scratch. Like,
like, she was my Girl Scout
troop leader. She was like. She made us a
birthday cake, like, whatever we wanted every year for our

(13:36):
birthdays. Like, she was just happy, go
lucky, um, type
of mom. I have a lot of
really, really pleasant memories with her from
childhood. She also would, like, erupt
and, like, scream when, like, you
know, she messed up something she was cooking or something like
that. So, um, it's so easy to, like, only

(13:59):
share, like, the. The sweet parts of someone that we've
lost, but they're. They're really funny parts to her
too. Um, that we enjoy
telling those stories as well. Um,
but as my mom aged, I
would say, like, probably easily in her 50s, like,
early 50s, started exhibiting signs. We didn't know they were

(14:19):
signs at that point. FTD
is not like a memory type of
dementia. It's, uh, you know, a lot
of people know Alzheimer's, and they know,
like, memory dementias where
FTD doesn't affect the memory, it
affects personality, compulsion, control

(14:39):
behaviors. Um, so it's
often misdiagnosed.
Interesting. Yeah, it's under
the umbrella of dementia, just like Alzheimer's, but
even FTD has different variants.
So it's. This is why research is so
important and why awareness is so important. Um,

(15:00):
so people often. It takes
often an average of three and a half years
to get an FTD diagnosis because
it's misdiagnosed as depression,
menopause, alcoholism,
um, midlife, um, crisis. Like,
because it happens. It's, uh, the most common type
of dementia under the age of 65. And

(15:22):
so it's often in, like,
midlife years where, uh, People are
changing sometimes, right?

Um, and I'm sure everyone else is around them
going, oh, you're fine, you're going through menopause, you're
fine, you're just.

Yeah.

Oh, of course the, the nest is empty.
Or of course you're getting into your 50s. This is what
happens.

Right?

Yeah.

Right. So, um,
you know, my mom was
expressing stories that were
delusional. Like, she was telling us things that were
like, off the wall. And
um, at first they sounded
very believable, like real world type of
things. Like, um, she would tell me

(16:07):
about a man, like, following her in the grocery
store, or like someone at church who wanted to marry
her, or like all this stuff. And
I'd be like, oh, okay, that's interesting. You know, and
then it was, it was stories like, uh, she told me about
like a man and a son coming into her backyard.
And I was like, hm, that's weird. Like, what

(16:27):
is that? And you know, you try to rationally explain
it. And so I thought, well, you know,
it could be, you know, adult who
needed care and the dad had to go, you know, get him. Or,
I don't know, you start like trying to explain it, rationalize it.
But those stories got more and more off the
wall and bizarre. That's, that's how we knew, like,

(16:48):
we really needed to get her checked out.
Um, but some people with FTD don't have
even that. They just have someone who starts
to like isolate and cut off themselves
socially and stuff like that. So it does just look like a
personality shift.

Um, do they recognize it or is it mostly
the people around them that recognize it?

It's mostly the people around them.

Mhm.

Yeah.

So personality
changes, just odd
behaviors, just m. And it's
gradual control.

And sometimes there's a behavioral variant of
FTD that can. The, the
stories people tell about their loved ones, like
getting arrested or like,
um, you know, being
like, really like
sexually unregulated. It's. Think about
our compulsions. So like eating,

(17:44):
sex, like all those things that you think,
um, we like stop ourselves. Like
we have reasonable function with those things.
But, um, so like, yeah, it can be
really traumatic and problematic
because people's loved ones can find
themselves in really devious
situations.

Yes. Like what? Um, dad doing like
what?

Exactly. And my mom, hers.
Her compulsion controls mostly around like food and
drink. She was like kind of food obsessed and drink
obsessed. And so that was
challenging, but, you know, less,
um, complicated. Like it wasn't legal trouble or something.
So, um, so yeah, it's, it's,
it's wild. Like the different stories

(18:30):
you'll hear within the FTD world.

I'll admit I've never heard of that. I've never heard of
ftd besides the, uh, florist
company. No, just kidding.
I've never heard of that.
But I. Yeah, I mean, I'm sure most people out there probably
think dementia, they connected with Alzheimer's, memory
loss. So you might have said this already, but
with ftd, they do not have memory

(18:54):
loss. Or some can.

It's. It's that, um.
I don't know, like, it's hard because my
mom's. I'm not. I'm not an expert
in dementia or ftd, and I would just want to clarify
that so people can go to
aftd, um, which is like, association
of frontotemporal dementia, and find out,

(19:17):
like, accurate information there. Um,
but I know within the
diagnostic test, it's like. If
the memory test is like, I'm going to give you a
list of seven words and you repeat them in the same
order. Like, FTD patients can do
it, whereas Alzheimer's patients would struggle with

(19:37):
it. Does that make sense? So it's like, exactly
the initial diagnosis, but, like,
ftd. Um,
I mean, part of it's like brain scan, too, and, like. And
they can also do testing,
um, to see if you have, like,
a genetic predisposition toward ftd.
Anyway, we're getting in the weeds with things that I probably shouldn't even

(20:00):
be talking about. But with my mom,
her FTD variant
was primary progressive aphasia,
which is a lot of words. Um, and that is
the loss, the losing the ability
to speak. So, um.
Yes, so that. So
when you think about someone's personality shift, compulsion

(20:23):
control and all that, but then they also just
cannot communicate.

Oh, so they're extra
frustrated, I'm sure, because then they can't
communicate.

Yeah.

And that makes it harder for the caregivers.

Yeah. I felt like mom was, like, going,
like, inward, like, deeper and deeper and deeper,
and I'm like, I know she's in there, but I don't. You can't
access it. So,
um, there's a lot.

So that is a lot. I mean. And then you're
taking care of little kids at the same
time.

Yeah.

What was their experience like? I mean,
having to see in their. I don't know if you called Grandma
or.

Yeah, they called her M. Yeah,
yeah, yeah.

I mean, what was that like for.
Them to see her?

Yeah, it was, I think, because of.
It's interesting with mom, because I look back and
now I have clarity to know, like, oh,
so much of this was happening early on where she was
already kind of shutting down and closing off.
So in some ways, their relationship with
her wasn't as
intimate as it would have been had they known

(21:35):
her in her younger years.

Right.

Um, so, like, the mom I remember my children
didn't really experience. Like, she was already kind of,
like, quirky and, like, maybe less
warm than I remember. Um,
however, like, seeing
someone with, like, advanced
needs and living with her. Like, she lived in our
house for. It was about a half a year, if

(22:00):
I remember correctly. Um, it's a lot.
And they go with me to visit her in her homes.
Once we had to place her into a elder home.
But, yeah, I think. I
think that I was so, like, coping and
crisis and trauma that I, like,
tried to take care of my kids in it. But also
probably. I don't know, I look back and I'm like. I

(22:23):
don't know if I did a great job with that.

It's probably such a blur, too, because.

You'Re just such a blur.

Yeah, well, you move into that kind of fight or
flight mode, and you're just, like, doing what you got to do. You're
in that survival mode and then. Yes. Yeah.
I've had times like that, too. Like.

Yeah.

You know, like, you don't realize it's trauma at the time, but it's
like. Oh, my gosh.

Exactly.

Yeah. You're just kind of, like, doing the best that you can,
and then you.

Come out of it.

Wait, what just happened? What happened?

And that's so true. And I didn't have
those words.

Yeah. I'm sure for you now, there's probably things that
bubble to the surface, like. Oh. And
even in, you know, with the making of the film,
it's.

Yeah.

Gonna be. Yeah.

Yeah. I think. I mean, you know, grief in a personal way.
And I think, like, uh, there's always, like,
triggers for your grief. It's like, it's, uh, always
going to come up however your brain connects
it. I mean, I was saying to my husband just last
night, our dog is 16 and she's, like, old
and she's struggling, and. And I was like,

(23:25):
I feel like this is so goofy,
but, like, it triggers me, like, with, uh.
Like, watching her behaviors, like, triggers me toward,
like, memories with mom, and it's just a lot.
Yeah. So it came up for me just last night, you
know.

Yeah.

And definitely the work on the film is.
I feel like it is healing work,
um, for me, because it's such a Personal
journey that I'm exploring
and creating and trying to
show. Um,
so it's healing, but it also just keeps

(24:01):
me really close to
everything I experienced. And. And so
I have to, like, be careful, like, and. And
find ways to care for my nervous
system and regulate. Yeah, for
sure.

I mean, I can even imagine, too. It's just. I know just in
writing a book, right? Like, when you're in those moments in
those chapters that are so hard to tell that
story, and then you're like, oh. I mean, there's times I
would just sit there.
Oh, my God.
But. And then you're like, I gotta, like. It's like you
revisit all over again.

Yeah.

The name, which I love. Wake up,
Maggie. I feel like there's a lot in those
three words. Tell us about
the name.

Yeah. Thank you. I. Yeah. So my
mom. My mom was saying Margaret
Catherine Branson is her name,
and she went by Peg or Peggy her whole
life. And then in
midlife, my parents divorced and my mom
changed her name to Maggie. And
so we were just like, okay,

(25:08):
do. Do it, Mom. Go for it. You know? But it's
funny, like, having a parent change their name. Like, as an adult,
you're like, okay, I've got to, like, adjust, but. But it's
cute. I'm like, she never loved, like, her name, and
she loved the name Maggie. And so in my
first film, um, I named a character
Maggie after her. And then this

(25:28):
film, I was like, I want the main character to be
Maggie. And the wake up
portion is just to
reflect on my own journey.
It's like that. That I think is a pretty.
Hopefully it's a universal experience for a lot
of people in midlife, but it's. It's about that
midlife unraveling, I call it. Brene Brown calls

(25:51):
it an unraveling instead of a crisis. Because she's like.
A crisis is like one moment and a, uh. Ra.
Unraveling is like a series of events.
And to me, what that
has been like. It's been like a thing
that has gotten me to the core of who I
am. And like, it's. It's.

(26:11):
It's been such a profound thing for me
to. I feel like, so much more solid. I feel like I
stand on my own two feet. I feel like I know myself.
I feel like I express myself in so
many ways, uh, deeper ways. And
so it's that journey of
trying to control everything and also,

(26:32):
like, block and deny so much of
who we are to
accepting what we can't control.
And, like, Owning who we are.
So it's that, that wake up call, that like
journey from like one to the next and
how often it's like it is like crisis and trauma that

(26:52):
gets us there. I wish it wasn't, but
it.

I know, right? Yeah. I mean, yeah.
Some of the, the darkest times have brought
so much light to my life and me
too. And to make me into who
not. Yeah.
The.
It's. I feel more untethered
now because of those experiences.
It was interesting what you were talking about, like with your

(27:16):
mom, how towards the end where she was. She
was literally going in more and
you're the out now you're coming out more,
which is kind of, uh, an interesting,
uh.

I love that you just brought that. I, I
love that you just noticed that because I, I
don't think I've. I've. I don't think I've said it that way
before. And I love that
so much because I think a lot about, um,
contract. You have to contract before you can
expand. And
just. Even the visual of what you just did of like

(27:52):
you put your hands inward and then expand them
out. And I think that is so
true because it's like those times where I'm caregiving
or like having babies or whatever felt
like a less. Like
less. It was a contraction of me so that
somebody else could, could survive
or thrive.

Yes.

And uh, then there's this like, okay, that
chapter is over now there can be an expansion.
So I love that, that even
connecting like my mom. M
Going inward and like enabled me to
go outward. Yeah.

M. Yeah, you might have to sit with that one.

I know. Good.

Oh yeah, yeah. It's
in that. Interesting. Well, they say too,
like. So like I. My grandmother
passed away. She was uh, uh, she lived until
she was 98, but even I think she
was 88 when she had full blown
Alzheimer's and did not who know
who she was or we were right.

(28:55):
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(29:55):
you truly come alive. But then they
say they whatever the
experts. Right. But it's almost as if they have already
passed.

Yeah.

Like they've already moved on to wherever that
is. And then they're just kind of like a shell,
if you will. Did you feel at any point, like,
towards the end of her life there that she was.

Yeah.

Be gone.

Oh, yeah. I mean, that's. That's the thing. I, uh.
It felt like such an active
grieving even while my
mom's breathing right in front of
me.

Yeah.

And that's. That's one of the
hardest parts. I mean. Oh, it's getting me
now because it's like watching her
feel it field. It felt like from my
perspective, such a shell of who she was. Like,
so, like almost a vacant

(30:54):
vacancy. But I
don't know. Like, I don't know
what's going on in her mind. I don't. She would
recognize me. That's the thing. Like, it wasn't
Alzheimer's, where she, like, couldn't tell me. She would,
like, light up and look straight at me
and, like, try to whisper my name.

Oh, uh.

So. But yet so cut
off. So cut off in general. Like, I would
try to read with her, sit with her, and she'd just walk off or, like,
go get in bed or like, just blank stare.
Like, non. No expression.
So just. Oh, uh, so
hard to be with that

(31:38):
and to want to be. To try to be the
loving caregiver that I knew she would have been.

Oh, and wishing you
could care for what she really.

Yes.

Really needed to wake.

Like, wake up. Yeah. Oh,
yeah. Anytime. There was, like, a
genuine connection with her in those last.
In that, like, last year or two. It
was, like, so life giving for me because m.
Like, if she would, like, look at me or if I got her to,
like, giggle at anything because it

(32:11):
was so rare and so
disconnected. Um, you know, music is such
a catalyst to that connection, um,
that it fascinates me that our brains have the
capacity to. To, like, key into music. I don't
know if you saw that with your grandmother, but, like,
so we would try to play some of her favorite songs and

(32:32):
you would, like, kind of see her connect to
it. Oh, it's.
It's, um. It is like,
I think that Care. I thought about this
with caregivers with her. Like, people
who were employed by the places where she
lived, didn't have the context

(32:53):
of her past to compare her to. And I felt
like there was something really, um,
beautiful. And maybe I envied a little bit about that
because they could walk in and just know her as she
was and not have any kind of loss
experience in that. Whereas for me, I'm,
like, always feeling that loss and that
grief, even though I'm trying to accept what

(33:16):
is right in front of me. Um,
and that is. I will add that
that is the one thing that. I don't think we talk
about this in our culture at all. Like, we have such an avoidance of
death. But I know for me, there was,
like, the mercy or the beautiful side
to her death was. One is that she wasn't
suffering anymore, but two is

(33:38):
that I can remember her as she was, not as she was in
the last bit, but that as she was before.
Like, the degeneration took her mind.
So that was good.

How did, um, physically do they
decline? Typically, like.

Yeah. Yeah. I mean, it's all. It's all
the function. So, like, um, you know,
with, uh. With my
experience with mom, again, it's like, you know, the.
The fine muscles of, like, writing
or I noticed even, you know, years before she
died, like, just like the detail work of, like,
making a sandwich or something stood out to me.

(34:17):
Um, because she was always like, a particular.
Like, I had always loved the way she made a sandwich because it.
You know, like, you grow up and you're like, oh, yeah, make me one,
Mom. Um, so. But
then, like, as she declined, like, it would get
more sloppy or, like, less meticulous. Her
handwriting was always super beautiful, like, you know, the

(34:38):
old script. And, um. And then it got,
like, more complicated, more simplistic.
Um, as she went, she. She.
She was walking
fine. Really, up until the end, it was
just like, obviously incontinence happened,
but also, like, her ability to

(34:59):
swallow became. And chew
became complicated because of primary progressive
aphasia part. Um,
so there's.

There's a physical realizing a lot of
this was. I mean, did she know? Like,
okay, this is really happening to me. And this is. I'm,
um.

I have no lying.

Did, uh.

She.

Could.

I have. No, I have no
idea. Like, yeah,
there's just. There's.
I want to think no, because
that feels
a little easier, right, to
digest being on my end of
it.

(35:42):
Um, if she was cognizant
of all that was happening, it would be
so depressing. As a human
to like, to be able to function mentally but
not be able to express it all. I, um,
know people. People around us
everywhere have that experience, and I can't

(36:02):
imagine. But, um. But yeah,
I don't know. I don't know. I want to believe
there were, you know, there was confusion. So, like,
she. She would, like, confuse her age
when she could still talk. Like, she would tell me she's 40 and
she would be confused. Um, so it's not
like memory was like, perfectly intact.

(36:24):
It just. It just, um, isn't the same
leading factor like Alzheimer's.
So. So yeah, it's. It's hard. It's
hard for me to process because a
lot of it is memory based for me. It's like looking back
and like, trying to remember behaviors
and symptoms and, um, in
my experience with her, and then it's just one experience compared

(36:47):
to, like, the diagnosis. And I was
in crisis and trying to figure out, like,
how to just piece my life together. And so even
like, researching ftd, I. I
didn't. Until after she died,
I. Because I. I heard frontotemporal
dementia, and I was like, oh, that's just where her

(37:07):
dementia is. It's in the front, um, inside
parts of her brain.

That's what I thought too. Yeah.

Yeah. And I was kind of like, oh, okay. Like,
ah.

But.

But still, I'm like, how do we pay for this? What do we do? Where do
we put her? Like, she's drinking every beverage in our
house. So it's. It's like
I can't buy my kids juice because my mom will drink it all.
It's stuff like that that I was trying to
solve. So, like, spending extra time,
like, I'm gonna research.

Research it. Yeah. Is
there anything that relieves the symptoms?

No, um, there's no treatment for
ftd, um, at all.
In fact, off. Uh, well, I think they are
developing medicine. Again, not an expert.

Yeah.

It'S all very recent that
more research is happening. Um,
but there's nothing that can, like,
slow it or change it besides, like, you
know, healthy lifestyle. Like, all the things that they say,
like, for brain health in general,
obviously that is going to have a good effect on,

(38:15):
on our longevity. But, um,
yeah, they are starting to find,
um, some genetic links. So some people
are genetically, um, if. If there's
certain genes present,
then they're. They're seeing that FTD can
be, um. Yeah.

(38:36):
Genetic. I'm repeating myself. But. But,
um, yeah, it's so good to.

Bring awareness to this, though, because,
you know, again, like, so many of us, especially at
midlife, it's either ourselves, our friends,
um, our parents.

Yeah.

That we need to be able to recognize
that it's not just they're going through a midlife
crisis or they're, you know, there could be a reason
why they're going through the house and drinking. Like
there could be like reasons as to why they're.
And I mean, I don't know, like
it. If you catch it soon enough, I

(39:12):
guess just being able to do what you can
to make it as comfortable as possible.

Right. Yeah. And like involving people in their
own care and stuff like that. And I do think because it gets
misdiagnosed and often not just
often not diagnosed until it's more
progressed, then it's more difficult to
do research and like all of that. Uh, so like the
sooner people like do test
and, and get awareness, the better because then

(39:40):
more people can contribute to research and
awareness.

Yeah. You kind of wonder even people that have passed away and
they did not know, they didn't connect it to that.

Yeah. Oh, and like, even like I think
about, I see like houseless
population.

Mhm.

On the streets and like we talk about mental health
crisis that people who don't have homes and I'm like,
they could have any kind of dementia
but FTD could be huge, especially if
they've gotten like legal trouble and all that. And
so yeah, it's just like our awareness as a
culture needs to grow. Just our awareness

(40:18):
as people walking around engaging other
people. But also like our awareness for
research and policy change too. Like I
think just in the U.S. like you
know, caring for people in a better way. Like it, uh,
I mean, why is it that we get like degenerative disease
and then we go bankrupt because we can't afford it.

(40:38):
Anyway, it just this whole other tangent,
but this is why I'm making my movie because
it's like let's affect some change. Let's affect
change as broadly as we can. Um, for
all of this. So. And movies
have this way of like getting in the back door,
getting into people's living rooms, into the theater

(40:59):
and like people can watch it and go, wait.

Yep.

This is kind of ringing a bell with like someone
I love is behaving oddly so.

Exactly. And hopefully even listening to this
podcast, hopefully someone will listen and go, oh,
ding ding, ding, ding, ding.

1,000. Yes.

Yeah.

Yeah. It's huge.

Yeah. I mean that is what's. I mean one good thing that came out
of COVID We're at least watching more, you
know, movies and Documentaries now.
Yeah, Films right. On Netflix or
Amazon or whatever.
Um, so when do you expect it to come out?
When do you think the film will be out?

Yeah, so we are filming in
February of 2025, so right
around the corner. And, um,
my hope is to have it completed by the end of the
year. That it is going to be based on. On
funding and. And our team
being attacked. But, yeah, it should for

(41:59):
sure within a year of
production. I hope to be wrapped with post
production, so.

I can't wait to see it.

I can't wait either.

This is. This piece of work, the
closest that's been to you.
Closest to your heart.

100. Yes. Yes. My.
This film. Like, I love making films
and I have so many films, like,
in the works, like, in My Back Pocket, that I can't wait to
get to next that are very exciting to
me. But this movie, Wake Up
Maggie, is a mission for me.

(42:38):
It's so much more than just a movie. Um,
my connection not only to my mom,
but also just the fact that I haven't
even shared this. But after my mom's diagnosis,
her younger brother got diagnosed with FTD as well.
And so the genetic component
is present in my family.

(42:59):
And we talked about, like, how
this film has, like, brought
me really close to my own grief and my own process
with mom, but it also brings me really close to deep
fear, um, fear of having
this disease. So
my work is so personal.

(43:20):
It's personal because I want to
tell these stories, but it's also personal because
it's. It's me facing my
fear and not running from it. It's me saying,
okay, I am going to control what I can.
I cannot control whether I have the gene for
this. None of us know, like, how our bodies

(43:40):
are going to change or what could. I mean, tomorrow something
could happen.

Right?

But if. If I knew that I
had it, if I. If I got tested and found out
that I had it, I would still make this movie. That's why it's a mission
for me. It's like, if I only had
five years to live, I would make this movie. And
knowing that and having clarity on that gives
me so much, like, drive

(44:06):
and determination. And so
it's really helpful because making a movie is
terrifying because so many
problems exist. And it's always like, okay, how
are we gonna solve this? But I'm
like, uh, yeah, this is my calling and my
mission and I cannot wait to make it. And it's gonna be so
fun and beautiful too, so.

Oh, yeah. Do you always watch the Final
Product. Where do you usually watch the final product?
Do you have, like. Do you watch it in a theater? Do you have, like, a.

Uh. It'll be all of the above. Because
in. In the. In the post
production, we'll be editing it together, and
then we'll do sound design, and then we'll do
coloring. So there's. You end up, uh.
Any film I've made, I end up watching so much that I think
is this. You can't even see it. It's like editing a book,
right?

Yeah.

You're like, I'm only looking at periods at the end of
sentences now. And now I can't even read what I
wrote, you know, so there's a little bit of,
like, the forest for the trees analogy where you're just,
like. You get so detailed, and then you have to scale back.
So I'll watch it probably more than I
would ever want to. Yeah.

Yeah.

But it's part of the creation, too. Um, and
then watching in the theater, anytime I have
ever watched one of mine in a theater with a live
audience is just like.
It's the most, um,
vulnerable and beautiful experience because
you're just like, here we go. Like, I am revealing.

I know that's. And that's why I was asking. I was like, you'll have to have a
seat for your mom.

And you're.

Oh, my God, she's gonna be with you. That whole process.

I love that. Thanks for suggesting that. I
love that. Yeah.

A little seat for Maggie.

Yes.
So good.

I love it, though, because you're taking something and making something
beautiful out of it, and it's like this, you know, be.
Be the change you wish to see in the world. And
that's what you have to. That's what we all have to do. And
so no matter how small, no matter
how big, it's just like, doing one part can
make a huge difference.

Thank you. Yeah, I appreciate that. And I. I'm so
compelled by. Whenever I see other people
do the same, like take their grief or trauma and turn it
into something that brings hope and healing. I'm like, is
there a better story to, like, watch and
witness in someone's life? And so I
feel. I feel incredible, incredibly grateful to do work that
means so much to me.

Yeah. Yeah. I think it's
great. I mean, I'm just thinking about again, the
Wake up, Maggie. And it's waking up Katie, and
it's waking up so many people. So it's.
It's, uh. It's a beautiful thing, as Martha Stewart
would say, It's a beautiful thing.

Thank you. I love it.

Uh, you've been great.

This is, uh, thank you, Wendy.

This is wonderful. And even I've got someone close to me right
now that is. Is dealing with dementia. So it's.
It's a nice reminder to
me to really even just appreciate
every bit of time that I have left.

Right. Yeah. We only have the moment we're in, whether
it be with someone we love ourselves or
anything. So, yeah, like, I think about that a
lot. I, like, I want to be present. I want to be present with my work
or with my people or on this podcast. Ah. With you right
now.

Yeah.

Presence is a gift.

Yeah. Oh, I love it. So where can we
find you? And then, of course, when the, uh, the film
comes out, where can we find the film?

Ah. Uh, thank you for asking. I like to make it as easy as
possible. All of my social media website is Katie
prentice, so it's katieprentis.com or at, uh, Katie
Prentice. Um, m. Wake
Up Maggie is atwakeup Maggie
movie.com or social
media's Wake Up Maggie movie. So
please find us. I would love for anyone

(48:05):
to join our community. I feel like just like
a book launch or anything else, it's like growing
an audience that wants to watch
the movie we're making is such a
beautiful gift. So following on
social media, signing up for our email newsletter, all
of that just gives us energy and,
like, more motivation to continue

(48:28):
on.

Yeah. Do you have any words you want to leave with
someone that is, you know, if they have someone right
now that they're suffering from either FTD or
dementia? Um, any words that you
want to leave with them just to give them hope and
healing?

Yeah, Um, I mean, I
really. There's a lot of years where I've
leaned into the serenity prayer,
and whether you quoted exact or not, I
think. I just think it's like it is.
It is all about accepting
what we can't control and
controlling what we can. So

(49:05):
we can't control whether we or someone
we love have a disease, but we
can control how we're present, how we
care for ourselves, how we care for them,
how we live in the moment we're in.
We can control our gratitude. You
know, it's like all of those things that,
um, that give us that hope

(49:28):
and healing, I think is. Is like, focus on
those things and try to, like,
open and take a deep breath on the things that you have to
accept that you can't control. That's what's helped me
so much in this journey that's been, uh.

That's, like, my favorite prayer. Yeah, I know.

It's so good.

I literally just said that earlier today. I was like,
oh, my favorite prayer is Yes.

I love that.

So I was like, oh, my God. I know. It's like if she says a serenity prayer, I'm
gonna just like. That's crazy
connected.

I know, I know.

Thank you so much. I appreciate you.

Thank you for having me, Wendy. It's been a pleasure.

Thank you, everyone. Have a great day.
Did this podcast inspire you? Challenge
you, Trigger you to make a change, or spit out your coffee
laughing? Good. Then there are three ways you
can thank me. Number one, you can leave a written
review of this podcast on Apple iTunes.
Number two, you can take a screenshot of the
episode and share it onto social media and tag

(50:30):
me Wendy Valentine. Number three,
share it with another midlifer that needs a makeover.
You know who I'm talking about. Thank you so much for
listening to the show. Get out there and be
bold. Be free. Be you
sa.

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259 💖 Wake Up Maggie: Katie Prentiss on Caregiving, Dementia Awareness, and Finding Purpose

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