The ONE Thing Every Caregiver Needs to Survive | Emma Heming Willis

Tell me about meeting Bruce, and I understand like it wasn't love at first sight

necessarily. No, it wasn't. Yeah, so, you know, Bruce and I, we met as any model

and Hollywood actor would meet in a gym. So we were working out with our trainer,

Gunner Peterson, in Los Angeles. And actually, Bruce was coming in to take a look

at the gym. And I had already been working out with Gunner. And as I was leaving,

Gunner was like, oh, I want to introduce you to Bruce and his friend, Stephen. And

I was like, oh, man, like, I'm just leaving the gym. And I'm like sweaty and

gross. But, you know, Gunner was always the connector. He always introduced everyone

to everyone. So this was no exception. So I met Bruce and Stephen. And then over

the course of a couple of years, you know, Bruce and I would run into each other

at the gym. Like I would work out from 9 to 10. He would come in from 10 to 11.

or like our times would overlap.

Which was pretty, that was, okay, so was there a first date, but the first trip

was like a big one. I remember when I read that in the book, I was like, oh,

that's a big thing. That was a big one. What was that? So we had our first date,

which was a dinner date. And I at the time was getting ready to move from L .A.

back to New York. And I was having dinner with like a bunch of different friends

every night before I was leaving to travel and move back to New York. And I was

having dinner with my friend. And Bruce was really trying to like,

relationship started. And then he asked me on this trip, he's like, you know, for

New years, we'll be going out to my place in the Turks and Caicos. And I would

love for you and your friend to come. You know, my ex -wife, to me, is going to

be there. She's going to be there with her husband. We have our three kids there.

And I was like, that's crazy.

I was like, you know what, thanks, and I'll see you, you know, when you get back.

When you get back. I'll see you in New York when you come back because my friend

and I already had other plans. So I told my friend Ali, I was like, listen, I,

you know, Bruce brought up this trip and, you know, we're going to do our own

thing. And he's like, my friend Ali was like, what are you, what are you doing?

Like you play everything so safe. Like, obviously his intentions are fine. His ex

-wife is there. His three young daughters are there. He's setting you up in your own

villa. Like, let's go. Let's go have fun. Let's just go, like, explore, see what

this might be. And I'm really happy that Ali pushed me to do that because otherwise

I would have stayed in my sort of safety comfort zone, not have sort of taken any

kind of chance on anything. And I did. And on that trip,

I really got to see Bruce is a family man. And I just, that was it. You know, I

just saw how he was, not only with his young, you know, daughters, I mean, his

youngest, Tallulah was like 12 at the time, I want to say. And, yeah,

I got to see how he was with his ex -wife and her then husband. And I was like,

this is, this is, I could like subscribe to this. Like, I could get on board with

this. And, and that was it and after i left that trip you know bruce and i

started dating and in love and we fast track to a marriage in 2009 i want to say

and then you had your kids two daughters mabel and evelyn um mabel was born in

2012 evelyn in 2014 they're now 13 and 11 yeah so beautiful Girl dad.

Five, five girls. I've seen, you know, just in researching and getting ready for our

conversation, like so many beautiful photos, so many beautiful family photos. And you

can feel the love and you can feel the fun. Yeah. It's fantastic. So much fun.

Yeah. So how long were you guys married before you started seeing,

noticing something was different? Yeah. It's so hard. And it's very gray.

Yeah. You know, what I say about FTT is that it was.

So it was hard to flag. Yes. You know, for Bruce, he was diagnosed with FD,

frontotemporal dementia, and that can affect people in three different ways. So

behavior, speech, or motor. And for him, it was speech. So what he was diagnosed

with was FTD, PPA, primary progressive aphasia, which affects your language and

communication. So for Bruce and how it showed up was in his communication. and,

you know,

which I thought was really interesting about, you know, Bruce, you so engaged and

always in the conversations and all these women around your dinner tables. And that

was just kind of, that was the vibe. And then in your writing, just starting to

notice him being a little removed during those conversations or things, right, was

that some of the first indications, things that you started to become aware of?

Yeah, like he would sort of just melt into the background. And that is really not

who Bruce was. Yes. You know, very lively, very engaged, especially when it came to

being with his five girls. And, you know, sometimes I thought, well, maybe it has

something to do with his hearing. You know, he had lost a majority of his hearing

in one ear when he was filming the first diehard when he was like 30. He was

underneath a table shooting, you know, one of these firearms without ear protection,

and that blew out a majority of his hearing. So I always felt like, well, maybe

he's just not hearing us. Like, or maybe it's just too much. And he's not wanting

to jump into the conversation. So these were like these moments of like, hmm. And

how long, like did you start to notice like, wow, this is going on for well? Like

I know, you know, in any of our relationships, in any human relationship. There's

always going to be challenges. Josh and I, my partner and I, we've been together

for, gosh, I think it's 23 years at this point. So a long time. And there's always

ups and downs. And sometimes there's stretches where I know at least I'll speak for

myself where, you know, there is more friction or you're like, yeah, we are on

different pages right now. So I'm, I'm curious just from your experience and from

what you can remember. And I know it's gray. Like we were sharing before we started

rolling, you know, my dad has some form of dementia. I still don't have a diagnosis

for him. But, you know, I'm like, oh, dad's always been a little forgetful or

sometimes he repeats, but he's done that early. But now, you know, and it's hard to

pinpoint when, when, when, when, when, so for you, when you were in that kind of

zone of going like, okay, we're misaligned. Was there any part of you that's like,

okay, do we need, like, you know, Josh and I've gone to therapy? You know, did you

start thinking, okay, relationship counseling? Was that

Yes. And then we'd kind of come out of it. And then you'd think, oh, okay. But

then we'd sink back into it. So it was very rocky continually. And he wasn't

raising his hand that something was wrong. No one was flagging it with me. And I

was thinking, like, maybe I'm going crazy. Like maybe there's something wrong with

me. So there just came a point where I thought, this isn't my husband.

I just knew in my gut and I said,

I just need to take this into my own hands and reached out to his doctor and

spoke to his doctor. And that was a hard thing to do, you know, to go over your

person's head, go around their back. But I just felt like there's something that

just doesn't feel right to me. and it was important

say and then what did you then do with that information to kind of get to the

place where you were like, okay, we need to now take this even further. Yeah, I

mean, it was a conversation of these are the things that I'm seeing. I don't know

what's going on. Yeah. And, you know, and giving examples.

And, you know, we came up, we came up with a plan that ultimately worked.

And that is to start with getting scans. Yes. And, you know,

it's a lot of smoke and mirrors and it feels terrible and it doesn't feel right.

But I am so happy that I did that. Yes. You know, it needed to be done and it,

you know, from those scans started to, you know, things started to surface. So let's

talk about that because I feel like anyone listening right now, I think this is so

important, whether it's for your life partner, your spouse, or it might be for a

parent or it might be for yourself because I think that there's so many different

levels to this. And this is why I was so excited to have this conversation with

you because the more I've dug into things with my own family, even for myself,

again, another thing that I brought up off camera was like, you know, for so many

people in my audience, I have such a huge audience of women who are probably over

40, many of them 40s, 50s, and they are in the midst for themselves of

investigating like what's happening with myself, is this menopause, perimenopause,

and then we have our spouses and our parents. So just in being able to name and

discuss the symptoms, something's not okay and advocating for yourself because I

remember taking my dad when we realized something was wrong, I booked him a doctor

here in New York City in my own naivete thinking like I'm going to bring him to

the best doctors than breast neurologist in New York City. This is like not very

long ago. And we're sitting there and I was expecting more. And it's just like they

gave him a series of tests on a piece of paper and they sent us out. And they're

like, he's fine. Like come back in six months. And I was like, my dad and not

fine. Like I know this man. And there was a whole other list of things. But I

just want to just share this with you because you've done so much work in this

realm. For anyone listening who's no

for them. You know, they're probably raising a family, holding a job, you know,

being able to show up in life. And if you start noticing that something is not

right, that is a change in the brain. Yeah. And that needs to be addressed, like

immediately. And I didn't realize that. So it's also,

I think for us, for me,

you don't want anything to be wrong. Absolutely. So you want to maybe dismiss it,

be in denial about it. Yeah, we're just having a rough patch. We're having a hard

time. We're going to move through this. And we're going to get through it.

Absolutely. And then you see like a glimmer of light. And you're like, oh, we're

good. We're good. Yeah. Yes, yes, yes, yes. And then you go back right to where

you were previously. Yes. And I think when you notice the change,

it's important to go to the doctor, you know, to be able to get it looked at.

Yeah. Because the sooner you do, the more support that you can put around you and

your person to be able to just try and move through something like this that is

very difficult. Yes. And I think women advocating for themselves,

you know, that's a hard thing too at the doctor's office. I've been dismissed plenty

of times with my doctor. You know, one was for like my own brain fog. Yes. Going

in and just saying, you know what, like I'm not sharp. I don't know what's going

on. Yeah. Oh, Emma, you know what? You're not sleeping. You're stressed. It will

pass. It'll be fine. And it wasn't. And I had to then go seek a brain health

doctor to be able to really, you know, dive in to see what is going on with me.

Yes. And I do hear that. It's like what you said when you took your father in,

they get a snapshot for five minutes, 10 minutes. And a lot of doctors are saying,

they look great. Yeah. You're fine. They answered all the questions fine on the

sheet. And then they'll send you on your way completely. You know, and that's so

hard. And also the thing about FTT, which is tricky, is that FTT doesn't affect

your memory. So people with FTT can pass these Alzheimer's tests.

Yes. Your brain does so much more than just hold memory, right? So for FTT, it

affects your frontal lobe, your temporal, you know, your temporal is language, your

frontal lobe is behavior. And if you go in to take an Alzheimer's test,

you're going to pass it it because it's not about memory, about something else.

Yeah. And we're going to dig more into that, too, but I'm really appreciating that

we're having this conversation because I want to emphasize for everyone, you have to

continue to advocate for yourself, especially when your gut tells you, even though

the doctors come back and say you're fine for so many things, whether it's in this

category that we're talking about today or anything else, if you know in your gut

that something is not okay, don't stop when one doctor or even two or even three

tells you this is all in your head and have a list yeah you know when you go in

you need to make sure you need to go in knowing i hate to say this knowing that

you were going to be dismissed and that your person is they're going to say they're

fine yes so make sure that you have a list in your phone you have it written down

whatever that looks like so when they say something like that but just be like no

you know it's hard to stand up to our doctors right we i mean for me that was

really difficult to do to do. Yeah. But it is important. Have that list say, you

know, I'm noticing this. This is what happened. And this happened then. You know,

they're getting such a small snapshot. They don't, they're not living the life.

They're not seeing. They don't know who your person was prior to who they are

today. Yeah. So I think the list is important. Let's take it into 2022 when you

began to get some answers. I love that you wrote initially you were hoping it was

like a benign brain tumor you know what i mean it was something that was going to

be taken away but when you went into the neurologist office that day when they sent

you out with nothing but a pamphlet can you walk us through that moment what they

said and what you wish every family would do after a diagnosis yeah i mean we went

in that day for a diagnosis i knew that day, I knew this was going to be our big

day of finding out, finding out what this is. Yeah. And our,

you know, neurologist gave us this FTT PPA diagnosis, and I couldn't believe what I

was hearing. You know, I didn't really understand the disease, but what I had heard

was that like FTD was the worst of the worst. You know, there's like 120 different

forms of dementia. All of them are terrible. But for some reason, the one that I

kept hearing about, they're like, oh, that's the one that you don't want. And that's

the one that Bruce was diagnosed with. So I was just out of my mind.

You know, I heard it. And I had pins and needles all over my body.

I felt like I was free falling. Like, it was just, it was a terrible.

And because, you know, the neurologist doesn't have that.

traumatic, you know, appointment is where this book comes from. And also,

you know, I've been working with UCSF and talking to them about,

you know, when someone is diagnosed, you need to send them away with a resource,

like one resource. If that doctor would have said, like, this is what your husband's

been diagnosed with, but I want you to know that there is support. And you should

contact the AFTD, which is the Association for Frontotemporal Degeneration. And if you

go on that website, they are going to have a ton of resources. You're going to see

support groups. You're going to see what this disease is. I mean, just that. I

understand that that neurologist only has a finite amount of time, and it is there

for, they're there for the patient, but they also just need to be able to have,

there needs to be some kind of support for the caregiver. So I'm working on this

roadmap now and just hoping that this will, you know, get some wings and be able

to sort of fly across this country that people will be able to, neurologists will

be able to use this. Yes. When someone is diagnosed that the caregiver walks away

feeling like they are supported because there, there is support out there. But I

didn't know that. Yes. So I walked away with nothing, and I started to do my own

research and, you know, digging into the scary worldwide web to look up, you know,

even a headache is like the worst place to look at, right? Like you're dying, you

have a brain tumor, you're, you know. So FTT is, it was a terrible thing to try

and, you know, understand through the internet. What was that experience like going

home and was Bruce able at that moment was he he got it too because I can't

imagine what that ride home in those initial conversations were like because I

remember even again very very different but in the same somewhat universe of like

being with my dad and me having awareness that his brain is not what it's been yet

he's still very much with me and going through my own motions of what do I say to

him what you know kind of going through okay what do I need to go deal with on

my own my mom my brother and you know it was all it's always been and it

continues to be a lot of parsing through what I can voice to whom so you know

with FTD people get diagnosed very late in their disease they say they say it takes

about three years to get to a diagnosis. So by the time you're at the diagnosis,

your person is very advanced in their disease. There is a neurological condition that

goes along with with FTD, which is called anisagnosia, where your brain can't

identify that something is wrong, that something is happening, which is kind of like

the blessing, I think, and there's a blessing and a curse for that. Bruce never

tapped in to the I

And that is the thing with anisagnosia. It's just the person just doesn't recognize.

So I just knew that, okay, now I got to figure this out. And now I've got to go

home and I have to tell our two young daughters who knew that we were getting a

diagnosis that day.

And yeah, you have to share, you have to start sharing the news and figuring it

out, figuring what are the next steps. What do I need to put into place? One step

at a time. You know, I loved it too because you have so much, I just, I love

your book because it's so practical and it's so actionable. And you have just

assembled the most incredible group of experts that all their voices are in here as

well. And I loved one of the things I learned in your book was how vast the world

of dementia. You mentioned, you know, there's 120 different types of dementia. And

when people hear it, they automatically think Alzheimer's because that

upsets me because I feel that it is really important to get to that diagnosis so

that then you can support your person. Then you can understand maybe what medications

might work to help with certain symptoms. You know, if you're being,

if someone thinks that you might have Alzheimer's and they're giving you these

medications for Alzheimer's, well, it could just aggravate and activate something not

great in the person if, let's say, they have another form of dementia. Yes.

So, you know, that we have to be very careful with that. And that's why it's very

important to get to that diagnosis. And I know that, like, listen, like, the brain

is complicated and, but I think so much can be revealed on those scans.

So you want to make sure that you are with a great neurologist who knows how to

read those scans accurately and properly.

be able to help us with language and whatever that might be, you know. And that's

what I started to do was just to really try to cherry pick the right specialist to

be able to support my husband as he walks through a progressive disease that will

not get better. I think, too, it was important. I love that you talk about this.

It's like understanding exactly what your person has, then helps you,

your entire family, understand what the journey ahead might look like. You can

understand as the behaviors change, as it progresses, what you might expect, even

though so much of this is unexpected. In our case, it's like there's times when

I've been with my dad, I'm like, wow, he's having a good day. And it's like,

everything's okay. And then there's other times where it was, it's been like, wow,

it's very much not a good day. You know, and you can start to feel through that,

but the more I've tried to educate myself, the more empowered I've felt so that I

can understand and then also be that care partner, which I also like that you

pointed out that wonderful little phrase, you know, there's a caregiver and a care

partner. So I love that notion. But it just helps me then advocate for him with

the other providers that are giving him care. And honestly, within my family, it's

been contention points, especially in the early days. I love my brother. He's

awesome. And we've been, both of my parents are in, you know, in a bit of a

situation. So we have each other and we're trying to navigate it. But there was

times when he would be like, why can't he just do X, Y, or Z? And I would have

to be like, hey, bro, I need to remind you this human that we love so much.

Shell of Pops is there. But the brain is different right now. And to expect,

you know, so it just, I feel like it is so, so, so helpful to understand the

details and the progression that knowledge is power and it empowers everyone who's

taking care to take care better. Yeah, because I also, and I love that you have

educated yourself. And I think that's, that is so important that we land on that

diagnosis so that you can really educate yourself about that diagnosis. Because,

you because one of the experts, Tepa Snow, that I have in my book, she's an

occupational therapist, a dementia care specialist. And she always says, like,

knowledge is the greatest stress reliever. Yes. And it's so true because once you

have that, for me, it really sort of settled my nervous system a little, not a

lot, but a little, to sort of understand. And then you can really learn how to

separate your person from their disease.

and why I go back to the idea of like a

that was really helpful to be able just to sort of bring me back to like, okay,

he was here the whole time. It was just his brain that was changing. Yes. And

then, you know, you learn how to support them through the disease. You'd be,

you know, a couple steps ahead to sort of learn how they might progress so that

you can support them and support yourself. Yes, which is exactly where I want to go

next because this was the biggest piece for me that I did not fully expect in my

own life about how difficult for me. It's been like two and a half years now with

I had not one, but both parents crash at the same time. And God willing, God

bless, they are both still alive and we're actually starting to see some hope in

certain areas, just stability I'll say from clarity and good support. But you

mentioned a simple action step in the book that everyone listening right now can

take, whether it's for their loved ones, your spouse, your child, your parent, it's

create a medical folder. I remember when this all went down, I had two enormous,

like I was at my parents' house, New Jersey, and it was like this big zip lock of

all my dad's stuff, and I'm going to cry, but like this big zip block of all my

mom's stuff. And I was just like, how the hell can I run this huge -ass company,

you know, for the past 25 years, and I'm sitting here, and I just wanted to melt

because I was like, no one else knows. I know. So if you want to talk about that,

and I'll get myself together. Yeah. I appreciate that because that is exactly how I

felt. There was, you know, every Sunday I would do Bruce's pill packs, you know,

with medications and vitamins. And as I'm doing it, I'm thinking to myself,

I am the only one that knows the schedule. Yes.

I am the only one that does this every Sunday. I am the only one that knows when

to administer this medication. I'm the only one that knows his doctors,

the plan, the this, you know, I took everything on myself.

Because that's what we do as caregivers. You know, you just take it on. You don't

want to burden anyone with anything else. But that is so dangerous.

I'm going to read you something about statistics when it comes to caregivers. So

caregivers die at a rate that is 63 % higher than people their age who are not

caregivers. And 30 % of caregivers die before the loved one they are caring for.

this folder so that you have it and it can be shared even if you put it on you

know a PDF and share it with someone else like it it can't you can't just be the

only person who who holds the keys to that yes and I think for caregivers it's

really important for us to learn how to reach out and ask for help oh 100 percent

I want to go deeper on that like one of the things that we did um because we had

I have like two separate files I have my mom and my dad and they both have

extremely separate and severe sets of issues.

out there. If you find yourself caregiving for parents, it's like getting access to

financial, like all of the things. Because these medical folders,

especially, it's like to put it in a Google Doc, have it be shareable. Also, I

found in my experience, it's like the doctors in the different organizations and the

hospitals and all the places, they don't necessarily share the records. So it's like

having to repeat or remember where everything's at a particular time.

So just

that, just have that, have something with you so that you can just like hand to

them and see like they can see the medications. And it's just really important to

get organized. Yes. Very organized. Very organized. Keep it organized.

Keep it shareable. I want to talk about this part too because this was big for me.

Like when you first realized that you were burning out, what was like the first

move to start to protect your health physically, mentally or emotionally? So yeah,

I didn't even realize I was, you know, on the sort of fast -track.

formal help. Like you you are lucky that you have resources to be able to hire

someone to come in and help you. And I was so resistant for so long because I

thought that if I was to raise my hand and ask for help that I was failing. I

was failing as a woman. I was failing my husband. You know, this is not what we

do as women in society. you know, we take care of everyone,

we don't ask for help, and when we do, we're a failure. Yep. And that is really

what I thought. And I was so grateful for Bruce's neurologist who really was like,

no, it's time. She gave me that permission that I really needed because I swear to

you, if she hadn't of, I'd still be doing all the things by myself.

And the thing about dementia is that it is progressive and where you think that you

can now handle the symptoms and what's happening, this will progress and it will

change and it's not going to get better. Right. So it is really important to start

early to figure out what is that support. Who can I bring in? Who can I trust,

you know, to be able to sort of help as this, as this moves through? So,

you know, being able to bring in that support was helpful because I got to go back

to, you know, being a wife for Bruce. Yeah. Their kids got their mother back.

And I could, you know, really tend to their needs as well, tend to my needs. I

mean, people don't realize that how many needs go unmet when you are a caregiver.

They don't understand what's happening if they haven't lived it. Yeah. And dementia

plays out differently in everyone's home. You know, when you are not meeting your

own needs, it's impossible to meet everyone else's needs. Absolutely. I'll tell you

this. And it's not easy. Like nothing that we're saying is easy at all on any

level and I think we're it's a really interesting time and I'm you know no one has

the perfect answers but this is part of the reason why I was so excited to have

this conversation today because when you take a look at the global stats on dementia

specifically it's like this number is growing you know like it's growing worldwide

and I mean here in the states many of us we don't it's we don't live the same

way that we did you know generations go where you're surrounded by, you know, aunts

and uncles and, you know, an extended family, you know, and we have a very kind of

tight nuclear family, but like my brother and I are not near my parents, you know,

and for so many of us, it's like, where do you find that help? And so it's like,

it's not necessarily going to be easy, but knowing first that you need it and that

becomes mission number one to start to get that support. It's everything. Yeah. And

I also think it's so important for us to be having these conversations about care.

Yes. You know, because at some point, we will care for someone. Yep. Or we will

need care ourselves. And I think people want to like sort of shy away around this,

this conversation, but it is really important because caregivers just get, you get

thrust it into this without any knowledge or any training, any training, no

understanding. And you're supposed to keep up the whole rest of your, for most of

us, very big lives. You know, a lot of people in our audience are entrepreneurs,

but they're not just entrepreneurs. They're, why

Was it getting back to the gym? Was it going outside for walks? Was it like what

was one of the first things that started to have you regulate your nervous system

and feel like, oh, some of Emma's coming back here? For me, it was like being able

to go up for a hike. Yeah. You know, there was a local hike close to us. Now it

unfortunately has burned because of the fires. But that was sort of like just a

place where I would be able to go drop the kids off at school, come back, go

back, go to Will Rogers, which was the hike, and, you know, do this 40 -minute loo.

Beautiful, yes. You know, these are just like small things that we just take for

granted if we're not caregivers, you know? Like before it was like, I would run,

take the kids to school and then head back to make sure that everything was okay

with Bruce at home. And that's scary. That brings us so much anxiety. But to know

that, like, okay, I can, I have time. I can go and do this hike and really start

to look after myself, my nervous system, just being outdoors in nature is so,

for me, so healing. Yep. So that was like one of the first things. Being able to

pick my kids up from school and say, we don't have to rush home. We are going to

go for an ice cream. And then we're going to go out to dinner. Yeah. I mean, this

is like. I know it sounds so basic, but it's, it's a free thing. But it brought

me so much joy. Yes. You know, to have a little bit of space and a little bit of

freedom to be able to do just some simple things.

Yeah. You know, I don't need the big like, oh, I'm going to go on vacation for a

week. That's not what I need. Yeah. I want to do that. I just want to have just

these simple moments of like even going to the coffee shop. I'm going to sit here

and have the coffee. I'm not going to run home with a coffee. Yeah. you know

It's so well -meaning, right? You know, people, they want to help. They don't know

how to help. Yeah. And I think what I ask of caregivers, you know, caregivers are

so decision -fatigued. Yes. You're making decisions all the time. So when that comes,

and I have heard that countless times, you know, caregivers say, usually,

for me, I'd be like, I'm good. That's what I said too. I'm like, I'm really good.

Just don't put anything else on my plate. Yeah, because I can't think of one thing

to have to try and figure out. Yes. So what I do is I ask caregivers to do a

little bit of busy work, to think about the things that they do in a day, in a

week, in a month, and create this list so that when that text, when that phone

call, when you have that, you know, encounter with a person and they say, if

there's anything I can do, please let me know, you have something, you know,

because when someone is asking to, you know, they want to help. Totally. We need to

accept that help. Absolutely. We really do. We can't be doing all the things. And

it can be as simple as, will you go pick up this prescription? Will you come to

the next doctor's appointment with us and, like, drive us to the front so we don't

have to deal with the parking structure? Can you drop some groceries off at my

front door? You know, there's numerous things that we do every day that we can

outsource to someone else. And I think that's,

that's the right thing to do. One of my favorite chapters was expect an array of

emotions. And that you wrote, I wish what I knew earlier was that a full spectrum

of emotions comes with your person's diagnosis and it's crucial to allow yourself to

feel all of them. And I remember when, you know, for me,

it was probably like, I don't know, eight or nine months into my whole situation

where I was like, woo, I was fraying at the edges. And my friends were like, I

really think you need to talk to somebody. And I was like, really? I was like, oh,

like, thank you. Like one more thing on my list. Like, now let's go find a new

therapist. Now let's go. And again, I'm spicy. I'm super spicy. So that's like my

natural response. But I think that it's really, really important to talk about how

many wide range of emotions, all the emotions that come with this journey, that

they're okay. And I loved the tool that Patty Davis taught you. Do you want to

tell everyone who Patty Davis is and just to give yourself 30? I want to talk

about that. So Patty Davis is the, she used to be a first daughter to President

Ronald Reagan. So her father passed away from complications of Alzheimer's disease.

And she became an incredible advocate who ended up running Alzheimer's support groups,

not just for Alzheimer's, but different types of dementia as well. And she wrote

this wonderful book called Floating in the Deep End, which was one of like the

first books that I read when I started to become a caregiver about, you know, and

I just loved her just sort of no nonsense.

emotion, but set your timer for 30 minutes, have that emotion, really get whatever

it is, whatever that feeling is, just be in it. And then once that alarm goes

after 30 minutes, you got to get on, you got to get on with your day. And it's

not like you're, you don't want to suppress your feelings, but I think it's

important to feel the feels. Yeah. But then you have to, you do have to move on.

Like you can't sit in it. I think, you know, early on, I think with like the

misconception when it comes to caregiving and emotions that caregivers feel, I think

people feel like, oh, they must be so sad. And there's so much grief.

And they think that that's it. So, and that's what I felt were the only emotions

that I was allowed to have. Yes. And then I started realizing that, no,

actually, I'm having these feelings that like I'm angry. Yes. And I am resentful.

And frustrated. And frustrated. And I'm not being as patient as I want to be. And

just having those and then feeling like, oh my God, I'm a terrible person.

Yes. I'm a terrible person because I'm having these feelings. And I can't tell

anybody. And I'm the worst wife in the world. And it wasn't until I was speaking

to my therapist. And I just sort of took a leap of faith. And I was like,

I'm going to tell you something. Yeah. And you might think I'm like the most

horrible person. Horrible person ever. And I voiced these, you know, anger, the

feelings of anger and the resentment. And she said, Emma, you are experiencing a

very messy disease. And these are, these are human emotions.

It is absolutely okay to have this. You know, she was treating someone else, a

woman whose husband had young onset Alzheimer's. And she says, everything that you

are telling me is not something that I haven't already heard before. Yes. And I was

so grateful and relieved to hear that because I felt so terrible about these

feelings that I was carrying. You know, it's okay to have the anger and the

resentment and that's absolutely normal, but it's really important about processing

them. Yes. To be able to get them out. And if it can't be with a therapist. I

always say, you know, fine.

aren't full in my life. What are you talking about? You know, they're not. And then

you feel seen and you feel validated and you feel like a weight has been lifted

off your shoulder because you've been able to release, you know, these feelings.

Absolutely. That's the one thing I feel really grateful for. Like I have people in

my life who I trust, you know, with my life and that I can be my full unbridled,

you know, Marie self and the things that have popped out in my mouth. Like I was

like, I can't even believe I just said that. And then five minutes later, I'm like,

that's not true. I don't feel that way. But it was so healthy for me to be able

to at least speak it. So I didn't hold it inside. And, you know,

I didn't squash it down or try and be some perfect saintly, you know, image of

myself that I think I should be, which is completely not real. So I just love that

you shared that. And I like, just give yourself 30. Like, give yourself 30 to just

be in it, to feel it, to experience it. And then I love what she said, you know,

I would never tell you not to feel something, but I would have you ask yourself if

that's where you want to live. So that's what, that's the words from your book from

Patty. And I just love that. Is that where you want to live? And so that's a

really nice takeaway. I also love this notion. Same for me, ambiguous grief, which

is, you know, if you can share your understanding of ambiguous grief or someone who

doesn't know. Yeah, so that was coined by Dr. Pauline Boss. And for someone,

you know, with dementia, ambiguous loss is that your person is physically present,

but psychologically not. And when you are a caregiver to someone with dementia,

you are mourning someone, you are grieving someone who is still alive. Yes. And it

doesn't really feel natural. And it's very hard for others to understand that if

they aren't living it too. You know, and the grief is that, you know, you were

watching certain parts of your person being taken.

So you were constantly in a different sort of state of

And yes, grieving, grieving while they're alive. And that's,

it's hard. It is hard. I love that your stepdaughter scout shared with you a quote,

grief is the price we pay for loving someone so deeply. I feel like that's so

true. It's so true. And the grief that I carry with me every single day,

it is my reminder of just how much I love Bruce, how much I love him. and yes

joy. And I want, you know, people to know that. That in the beginning, yes, it's

very dark. And it is a process to get to that. It will take time.

But I will say that hopefully you will want to get there,

you know, so that you can have some light and have some joy on the journey

because, yes, dementia is horrible and it's very sad,

but it's not all sad, you know. We have plenty of moments of laughter and light

and fun with Bruce. I think there's a terrible picture, this narrative around

dementia that is so bad because when we paint this picture of it just being

negative, I feel like then the person with dementia doesn't receive the best care.

Yep. And nor is the caregiver. So I am here to tell you that it's not all bad

and that there is moments of joy and I am, you know, here being able to be here

and talk to you and smile and laugh, but also carry my grief and sadness with me

too. It's the both and, you know, there's been so many times and I, you know,

there's so many stories, which we've had in our family that are actually hilarious,

like I both cry and I laugh. But my brother and I, my family, we've been talking

about, particularly with my dad,

his natural bent is like he's kind of like a happy guy. So there's a lot of life

and there's a lot of optimism. And so one of the things that we've experienced, and

I'm always looking for every blessing I can count, you know, in every moment that

can be viewed through a lens of whether it's humor or connection or joy. And like

whenever my mom's having, when there's been really traumatic things with my mom, I

was sending my brother and even Josh. I'm like, you know what's so great about my

dad? He's not remembering it. I said, you know, so when we're with him in present

and real time, we're like, oh, she's doing great. So there is this and it's very

pure and it's very real. And even now there's like when it's like,

hey, pops, you know, how's this going? And it's 90 % of the time, all good news.

So that for me has been like a real, real blessing. And even if there has been

moments where he hasn't been as happy or something's gone wrong. And I kind of go

check in with him, not to bring it up, but just touch base. It's like it's

completely wiped. You know what I mean? It's like a men in black moment. And he is

back to, hey, what's going on? How are you? And I'm like, All right, let's do it.

But that is what, that is the consensus. And I see that with Bruce as well. You

know, he's living his, you know, he's in the here and now. Completely. You know,

he's not worried about yesterday or what's happening tomorrow. He is just so present.

And there is something about that energy that I need, actually, because I'm living

in the past and I'm in the future. And, but when we are together and I am with

him, I can just sink into like being grounded with here, him in that moment? In

that present moment. Which is really beautiful. It's so beautiful. Like I've watched,

I get these little videos of my dad like doing artwork, you know, or we just doing

FaceTime or whatever. And I can feel the vibe. And it's like he's super exuberant

and same. It's like that we're not talking about whatever. I might hear a lot of

stories from the past, which I think with my dad in specific, it's really

interesting. the short term is

heartbreak into advocacy. This book is extraordinary. I also just love the focus on

your own brain health. We didn't dive too deep into that, but that's so important

for all of us. One of the things I wanted to mention, I don't know if you've gone

down this path, but I'm one of those humans who tries to take as good care of

myself as possible. And it was years ago before anything with my family, I had

gotten that little test that says, you know, and none of this, this is risk

factors, and we don't know what we don't know, but it was like the genetic kind of

predisposition towards a form of, I think it's APOE, and I have like the middle

risk version, not the highest, not the lowest, and none of this. So much of this

is about your environment, how you treat yourself and so much of this is luck of

the draw. There's people that can have highest risk, never get it. People lowest,

they could. So we don't know. But I wanted to thank you for emphasizing and hear

how important it is for all of us to take care of our brains now. What's the most

important message that you want to share with care partners and caregivers? That

there is support out there and that we need to learn to ask for it,

that we are not a failure when we do. I think that this idea that caregiving is a

solo mission, we just need to burn that. Yes. I think that, you know,

like what the experts and all of the specialists say is that the issue is that

caregivers wait too long to ask for help. And that when they ask for help, when

they finally do that whole ecosystem of care that they have so, you know,

eloquently and perfectly sort of put into place has fallen apart. And that it is

really important to put put that thoughtfulness,

bring it in earlier on so that you feel supported, that your person feels supported

as you walk through this journey. So, you know, caregiving isn't a solo mission,

and I want society to sort of move away from that so that we can really support

caregivers who are so unseen and so unsupported. Thank you so much for everyone.

if you don't have this gorgeous book.

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