Caring for a Parent - Essential Advice from Someone Who’s Been There, with Casey Beros - Better Than Yesterday with Osher Günsberg

Episode Transcript
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Speaker 1 (00:00):
What is ahead is the hardest, most challenging, seemingly the
most awful time that you will have, and it will
be the richest, most rewarding, most personally transformative.

Speaker 2 (00:16):
Time of your life. I'm a different.

Speaker 1 (00:20):
Person from before I cared for Dad to after in
all of the very best ways.

Speaker 2 (00:26):
And it is.

Speaker 1 (00:27):
Time that you never get back with this person that
you love like of course I would give him two
and a half years. He walked me in, I walk
him out.

Speaker 3 (00:42):
Good. Thanks for listening to the show. This is Better
Than Yesterday. Useful tools and useful conversations to help make
your day to day better than yesterday, every week since
twenty thirteen. My name's Osha Ginzburg. I'm glad you're here.
I have a question. What if right now this podcast
was interrupted by a phone call and it's your mum
or your dad, maybe your partner, and it's about their
health and it's not good news. What if it meant

(01:05):
that your immediate future was about to look very different
to what you'd planned, and that from now on until
an undetermined point in the future, you'll be taking up
the role of care. Now, maybe this isn't a what
if for you. Maybe you've already had this call. You
might be in the midst of that journey now. The
uncomfortable truth is that this is a situation that more

(01:26):
of us will face than not, and when we do,
there's a lot to deal with, There's a lot to know,
a lot of support you can need. My guest today
is Casey Barros. She's an award winning health journalist, keynote speaker, author.
She's done TV with Channel ten, the ABC, She's written
for Body and Soul, Women's Health, Muma Miya, and she
has been the loving care for her father and experience

(01:47):
that she captured in her best selling book Next of Kin,
A compassionate guide to the world of care, or certainly
what to expect when you're expecting to care for someone
you love. It's part memoir, part really grounded practical advice.
It's full of empathy, full of warmth. You can expect
all those things from our conversation today. There's important tips

(02:07):
about navigating the healthcare system, advocating making sure care is
also care for themselves, dealing with grief, the importance of
finding meaning in loss, and so much more. It's a
great conversation. We're going to get to it right after
the break Thanks so much for listening to the show

(02:34):
Casey Burros is my guest today. Her new book is
called Next of Kin. I'll put a link in the
show notes. Enjoy the chat. Thank you for coming in,
Thank you so much. How is your day today? How's
your morning? Good?

Speaker 2 (02:46):
Really good?

Speaker 1 (02:47):
I had breakfast in the sunshine, I flew in last
night marvelous, and then I had brecky and then I
came here.

Speaker 2 (02:54):
I couldn't ask for more.

Speaker 3 (02:56):
And where have you flown in from?

Speaker 2 (02:58):
From Perth?

Speaker 3 (02:59):
I'm aware of this place far away.

Speaker 2 (03:02):
It's a whole nother country on the other.

Speaker 3 (03:04):
Rise, it's not its own country. It's tried a couple times.
I don't think Australia really quite grasps how easily they
could just go, Okay, we're going to go nearby, Yes,
and that'll be it. Yes, what are we going to do?

Speaker 2 (03:16):
And we'd be fine.

Speaker 3 (03:17):
It'd be so fine. How is the western side of things?

Speaker 2 (03:22):
Earth is great?

Speaker 1 (03:24):
I was in Sydney for fifteen years and when I
got the call from my dad saying that he was ill,
that was when I moved back, and I was I'd
really very much built my life here in Sydney. Been
a long time. It had my babies here, I'd met
my husband here, I built a career here.

Speaker 2 (03:41):
I had no intention of going back.

Speaker 1 (03:43):
And then you get one of those calls that picks
you up by ankles and shakes you around a bit.
And I have to say, now, being back there, I
can see how breakneck the pace of Sydney was.

Speaker 2 (03:54):
But I couldn't see it because I was so in it.

Speaker 3 (03:56):
Ye, when you're in it, you don't know, and I was.

Speaker 1 (03:58):
I think I was quite lonely. Yeah, and you know,
I've moved home. Lots of my friends have moved home.
We're all raising babies together. We live in houses, not
apartments because the cost of living is different. So we
can throw our babies in a bath together and have
a barbecue, and we've got space to do that.

Speaker 3 (04:12):
Ah, tell me of this magical time, magical place. Where?
How old are your kids now?

Speaker 2 (04:19):
Five and eight?

Speaker 3 (04:21):
I asked this because our youngest hasn't We talk about
death a bit. We lost a goldfish the other day,
for example, Oh, we can just go get another one. Yeah, Okay,
he hasn't quite figured out that Mum and dad will
die as well. Do you remember how old you were
when you first kind of grasped that your parents were mortal.

Speaker 1 (04:43):
I don't remember how old I was, but I do
remember always having a very strong sense of my own
mortality and the people around me. And that's one thing
that dad always said to me. He said, You've always
had a really strong sense, perhaps too strong a sense
of that. I don't know where that came from, or
I certainly don't remember having lots of sick people or

(05:03):
lots of death around me, So I don't know why
or where that came from. But I do remember knowing
and almost being a bit fearful actually, of the fact
that life was going to come to end and end
one day, and how weird that was that one day
I just would not be here anymore.

Speaker 3 (05:19):
My parents were both doctors, so we asked him about
death quite a bit. I would ask him about have
you seen someone die in front of you? And me
and my dad to talk about it quite a bit,
and it was all very and because doctors, I'd seen
a lot of road trauma, I'd see dead bodies and
stuff like that, but I never figured out that it
could happen to them. When I was eleven, I think
about this to you today, when I was eleven, one

(05:41):
of my classmates lost her father, and in that moment,
I was in the back of dad's car and I
was like, Oh, what, my dad's gonna die one day,
and I kind of felt I just felt this like
really heavy thing. I was eleven, though, when I kind
of figured that out. When you become an adult, though,

(06:03):
it starts to happen more and more to your friends.
When did things start to When did you really start
to understand or understand it would how it might affect you,
or know how life might look like when your parents
aren't around anymore.

Speaker 1 (06:18):
I remember when I was in year nine, one of
my best girlfriends fathers died really suddenly. I think he
went for a scuba dive and whatever that thing is
that happens when.

Speaker 2 (06:28):
They don't equalize properly when they.

Speaker 3 (06:29):
Come up the benz.

Speaker 2 (06:30):
Yes, that happens.

Speaker 1 (06:32):
And I remember being at school and somebody coming to
tell her and her being taken out of the classroom
and into another room, and I think because I was
really close with her at the time, somebody came and
grabbed me to come and be a support person for her,
and I just remember in the for months afterwards, I
would go to her house, their dream house that the

(06:53):
parents had built, and I would see her mother sitting
in the kitchen staring out the window, chain smoking cigarettes,
and you know, watching the impact that had on my
friend and on her brother's and on the mother, on
the wife.

Speaker 2 (07:09):
I do remember that being a real moment of gosh,
this is there's no good news here, this is just
the pits.

Speaker 3 (07:20):
Oh yeah.

Speaker 1 (07:21):
And the impact, the human impact I suppose not as
a not as a concept, but the tangible impact that
that was having on those people, and that there yeah,
there was no silver lining, there was no good news.
He was just gone and that was awful for them.
I feel like that drilled it in.

Speaker 3 (07:39):
And you're describing I mean, now it's clue that someone
who's depressed, someone who probably didn't even realize the effect
that it was having on her own family, that survived.
I got a similar phone call that you got. I've
got a similar fun call from my mum. I was
looking overseas a bit of a shoulder. She was doctor,

(08:02):
so she wrote herself as thing went got an next ray,
I don't know. I way went for the radiologist. Solvie Sweet
walked out of the car park looked up at it went, ah,
I've got about six months. Yeah, called me so I
know what. I know what the phone call is like,
I've had it. Do you remember do you remember seeing
that that your phone light up?

Speaker 1 (08:24):
Do you remember that day in such vivid detail? I
we were in woggle Wogga. My husband had graduated from
his master's degree and he went to a university, Charles
Sturt University, I think it's called down there. And he'd
said to me, we're not going to the graduation ceremony.
And I was like, we are going to the graduation ceremony.

(08:45):
You are going to wear a cap and a gown
and I'm going to watch you walk across that stage.
It's been three years of our life that you have studied,
and I've either edited your assignments or had the kids.
We're going got the whole family to come. So it
was actually a really happy, joyful and I think because
my husband is a teacher, I'm sort of in media
and publishing and what have you, and so there's a

(09:06):
lot more I suppose you'd call them champagne moments in
my life than there are in his. He's kind of
the rock steady and I'm this all over the place,
and I said to him, I just am going to
like stay in this moment with you and like really
shower him in everything that he deserved for a huge
achievement doing a master's degree. And I remember Dad had

(09:27):
text me the night before, I think, saying, hey, have
you got time for a quick chat soon? And ordinarily
I would have speed dilled him, but I think we
were out for dinner celebrating my husband, and I wanted
to sit in that energy for a bit. So I
of course messaged him and said, is everything okay? I'm
just doing this with my husband. Can I call you tomorrow?

(09:47):
And he, on reflection, I could see that he hadn't
really answered my question as to whether or not everything
was okay, But he didn't say anything that felt sort
of alarming, and so I sort of parked it and
let my husband have his moment in the sun. I
went to the graduation ceremony the next day, and then
afterwards when we got home, I said, I've got to
call dat. He messaged me yesterday saying that he needed
to have a chat. And I will never forget I

(10:09):
was in this completely unfamiliar airbnb in Wogga Wogga had
never been there, never been there before, And I will
never forget the exact layout of the room, and the
colors of the wall and the texture of the carpet,
and exactly where I stood and then sat and then
slumped on the floor as he delivered this news, and
you know, good old older millennial. I immediately put him

(10:32):
on speakerphone and started googling what it was that we
were talking about. And he had told me that he'd
been diagnosed with something called mesa thelioma. So for people
listening who don't know what that is, that's councer from
exposure to asbestos. And so I immediately googled Mesa thelia prognosis.
And now I'm lucky. I wouldn't ordinarily recommend people jumped
straight to doctor Google, but I've spent almost twenty years

(10:53):
as a health journalist. I know the good quality sources
versus the not good quality sources. I just wanted to
get a sense of what it was that we were
talking about, and my eyes were like jumping from link
to link. Six months, twelve months fatal, incurable. I knew
it was really bad news and that I was going
to lose him sooner. Rather than later. And it's just
it's one of those moments that we could have. But

(11:15):
you can be on such a high. Yeah, but life
doesn't care. Life's like time to mix things up.

Speaker 3 (11:22):
Anything can happen at any time. That is the deal
of life. Yes, And if you really sit in that
anything can happen at anytime, it can. Anything means anything,
and anytime means anytime. Yes, And being acceptance of that
anything and any time could be the best day ever

(11:44):
when you didn't expect it. Or I said goodbye to
them on the way to school this morning and I
never saw them again. It's hard, but that's that's life.
And being an acceptance of that. In my experience, it's
hard but has made things easier. Yes, I tend to
get less surprised when shit goes down because being in

(12:07):
a resistance of shit going down, in my experience, has
been the great sorts of pain in my life. Trying
to push it away, being stuck at that denial space
bit of a blessing and a curse. Being literate, health literate,
it can make that bargaining phase real. Extend, really extend
that bargaining phase when you go what about oh, hang on,

(12:28):
let me call this specialist. Oh there's a treatment I
found a Mexican. Yes, you know. Did that happen to you?

Speaker 2 (12:33):
Yes?

Speaker 1 (12:33):
And I have to say I call myself the eternal pessimist.
And what I mean by that it sounds quite doomy
and gloomy. I don't mean it to be. But when
I hear six to twelve months, what that says to
me what I believe is six months at best. And
that doesn't mean that there's no hope or optimism. I

(12:55):
kind of prefer optimism over hope, particularly in that.

Speaker 2 (12:58):
Like real bad news.

Speaker 1 (13:01):
But what it did was it lit a fire under
me and we didn't dawdle. I jumped on a plane.
We went back to Perth. The borders shot behind us,
so we had sort of inadvertently moved to Perth because
we couldn't leave because we wouldn't have been allowed back
in again. So COVID forced our hand a bit. But
it meant that we immediately we booked the trips. We
went out for second breakfast, just because we went to

(13:22):
the beach on a Tuesday morning because we could, And
it meant that I soaked up every moment of that
experience with him and that we were very lucky. We
ended up getting two and a half years, not six
to twelve months. We really got more time than they
said that we would get, and a lot of people
have said to me along the way that it was

(13:43):
in part because of the care that I was able
to deliver right that gave him more time.

Speaker 3 (13:49):
Tell me about the choice around taking on the role
of the care with your dad.

Speaker 1 (13:58):
I don't remember making a choice, or rather, I don't
remember weighing it up. To me, it felt like almost
a compulsion, and I'm very lucky. I've got a friend
of mine who I used to work for. She's a
bit older than me. We've lived weirdly parallel lives. She
had lost her father at a very similar age, and
she was the first person that I called, and I

(14:18):
said to her, I was supposed to be recording an
audiobook in Sydney the following like, I had a lot
on on my plate, and we had very much built
our lives there. And I remember saying to her, I
don't know what to do. I'm hearing rumors that the
borders are going to close. I'm terrified that I'm going
to end up being one of those poor souls on
the Today Show pleading to be let in to the
state so I can say goodbye to my dying dad.

(14:40):
I really didn't want that for him or for me,
and I said, what do I do? Am I hitting
the panic button by going straight to him. I didn't
want to panic him either, And she said, drop everything
and go.

Speaker 2 (14:53):
You will work the rest out. The audiobook will be rescheduled.

Speaker 1 (14:58):
Nothing matters more than this, And I think I intrinsically
knew that, but it's like I needed permission from somebody
else that I wasn't being overly dramatic and that this
really was all that there is to focus on at
this time. I'm so glad that she did, because we
landed at midday to the premiere holding a press conference
saying that at midnight he would close the borders indefinitely,

(15:19):
and you did.

Speaker 3 (15:21):
Wow, that was a tough time. It was for a
lot of people, because in that moment, you think, I've
got a house to pack up, I've got you know,
there's an entire you know, cadence of life that will
go on and bits of it will fall apart because
you're not physically there. But then to just go and

(15:43):
it'll sort itself. Out what do you kind of wish
was also in that phone call about here's what's ahead
of you as far as your relationship with yourself, with
your kids, with your partner, with your career, because you're
going to do that. If you could have had that
phone call, if someone called you, if it were appropriate,

(16:05):
and they asked, what would you tell them about here's
what's ahead?

Speaker 1 (16:09):
I would say, what is ahead is the hardest, most challenging,
seemingly the most awful time that you will have, and
it will be the richest, most rewarding, most personally transformative
time of your life. I don't know any other experience

(16:32):
in life that packs the same emotional punch as the
pendulum swinging from you being the child and then being
the adult, to you essentially becoming the no matter how
old you are, to you essentially becoming the adult, and
then reverting to child, which is essentially what happens at
the end. And that doesn't feel fair and it doesn't
feel right, and it doesn't always work like that, but

(16:55):
that is what it feels like. And when you are
managing a young family and a care and some semblance
of relationships or a marriage or whatever your setup is,
and then trying to care for an aging parent. I
don't think anybody can prepare you for what that experience
is like, but I think almost being given the permission

(17:15):
to know that this is going to be rough, like
as rough as it gets physically, mentally, socially, spiritually, financially,
emotionally rough, and you are going to gain so much
from this experience, which sounds almost selfish, but care is
completely selfless, or that's how it feels. And I have

(17:36):
to say I am forever changed. I'm a different person
from before I cared for Dad to after in all
of the very best ways.

Speaker 2 (17:46):
And it is.

Speaker 1 (17:47):
Time that you never get back with this person that
you love. Like of course I would give him two
and a half years of my life, course he gave
me so much of his. I took the mentality of
walked me in, I walk him out. And I remember
I was sitting at a cafe with another older mentor
type friend. She had also cared for her father, and

(18:09):
Dad was being and I say this with love and compassion,
a total pain in the ass at one point, the
same perfectly, imperfect, flawed pain in the ass that he'd
always been, but now with a terminal prognosis on board
his own relationship challenges, life stuff, tough stuff, and he
was being really difficult. And I said to her, I

(18:31):
am this close to getting on a plane taking my
little family and saying, you can care for yourself if
this is how you're going to be, And I was
talking a big game.

Speaker 2 (18:39):
There's no way that I was going to do it.
I was just venting.

Speaker 1 (18:42):
You need somebody to vent to sometimes because it tests
even the best relationships. And I will never forget, she
said to me. But you won't because on the other
side of this, you will walk away and pack this
experience away in yourself, knowing that you gave it everything
that you had and that you may this truly terrible
time a tiny bit better for him.

Speaker 2 (19:03):
And she was bang on.

Speaker 1 (19:06):
I think for a lot of people when they are grieving,
they also have the complexities of shame, regret, disappointment, things
left unsaid. And I don't have any of that. I
just have pure, unadulterated grief.

Speaker 3 (19:21):
It's not complex, and grief isn't always staring at the
window smoking dirries. Grief can also be joyous. It's a strange,
sad joy, but it is a thing you talked about
the child becoming the parent. There's those little moments you

(19:44):
see in your own kids. This morning, Walkank going to
school and he's peddling his bike and he took this
tricky corner around aheely bin, Like, oh man, it's like
a little bit more independence that, a little bit less
dependent on me. Away he goes. You know when g
got her license, Like there it is when she went

(20:07):
overseas for the first time. There she goes. You know,
this little part of your breaks, like they're never going
to be the little girl again or they're never going
to be that little boy again, but you're also happy
about it when you have your own kids. Yes, you're
still someone else's child if your parents are still alive,
but you suddenly you get that, oh, the kind of
level up. Oh here I am. I wasn't this a

(20:28):
week ago, but now I'm here right, And then there's
almost another kind of feeling of I'm not saying it's traumatic,
but it is. It's a rough kind of launching into
a different version of adulthood. When a parent dies, or
when you take that as you said, it can happen
before it's happened to you. When you take on that

(20:50):
parent role. Can you talk a little bit about that
and what it felt like to, Oh, hang on a second.
I'm I can relate to because when I was overseas
or like, even though my parents on the other side
of the world, somewhere I know in the back of
my head there around they've got it, and there's this
place that I can go if I really really need to.

(21:11):
There's a couch. Was divorced and all kinds of shit like,
and that knowledge was like, I can do the rest
of this. You know, it's like a blave rep if
you're ap selling whatever. But once you realize that's gone
as never coming back that even though I was in
my forties, it's like, this is really hard.

Speaker 1 (21:29):
Yes, yes, And I think that we think it will
happen much later. You know, my parents, my mother lost
her parents in her I was sort of twenty or something,
so she would have been, you know, like in her
late fifties.

Speaker 3 (21:43):
Wow.

Speaker 1 (21:44):
And so I think we think that it will happen later,
And then when it happens earlier, and all of a sudden,
you're kind of top of the tree. And that was
a really interesting part of the process actually, both professionally
as a health journalist, and personally, I think I think
I expected that there would be somebody in charge.

Speaker 2 (22:03):
I didn't know who they would be.

Speaker 1 (22:05):
They might be like someone sitting in the sky with
a clipboard, or at least somebody sitting in an office
at a hospital or something. And even after at that
point fifteen years of navigating the healthcare system, reporting on it,
asking questions of our brightest minds, thought I knew this
system really intimately. And then I got there and I
was like, oh my god, we're in charge. I'm in charge,

(22:27):
and he's in charge the patient and the terror Like
when we say that the system is patient led, we
are not mucking around. Patient led, patient driven, patient navigated.
And if that patient is lucky, they have a carer
to sit with them in that ride shotgun help them
navigate the system. But so many don't. And that was
kind of shocking to me professionally. And then I suppose

(22:49):
on a personal level, those moments where you are having
to advocate for somebody and they're not really sure what
they want or what they thought they wanted isn't actually
what they want. When they get to the end of
their lives and you're still trying to advocate for something
that they told you that they wanted when they were

(23:09):
really clear mind. But now their body language is showing
you that maybe they don't want that, but you're not clear.

Speaker 2 (23:18):
It's so difficult, so.

Speaker 1 (23:21):
So hard, kind of like when you have little babies,
you know, and you start to learn over time, like, oh,
this crime means they're tired, and this crime means that
they're hungry.

Speaker 3 (23:30):
You can't see crimes. They're going to try Dad get
a bit more time on that iPad because Mum said.

Speaker 2 (23:36):
No, yes, exactly exactly.

Speaker 1 (23:38):
So it's kind of like that, and you're kind of
dealing with somebody. Even once children have language, as you
know aging parents do, you're kind of dealing with somebody
who's it's like they don't have a fully formed prefrontal
cortex anymore, and so you are like trying to speak
three different languages at once, and that is really tough.
And I found myself all the time going to the

(24:01):
healthcare professionals and being like, I need some guidance. What
are we looking at here? Have I got two weeks
to prepare my family for this or two months, And
by the end I had been white knuckling for so
long and I think that's something that we all do,
but particularly women.

Speaker 2 (24:19):
They will say it's.

Speaker 1 (24:21):
Fine, I can do anything for two more weeks, but
then it's two more months, and then it's two more months,
and you've already been white knuckling for six months by
this point. And we're so bad at waiving the white flag,
we really are, and we really need to wave it
why before we're on our knees. And so I suppose
you know, these are just a few of the layers
of complexity that are piling onto you as you've stepped

(24:44):
to the top of the tree, and all of a sudden,
this person that you probably would have gone to for advice,
your mum, your dad, they'll know they've bought a house,
solder car, bought some shares, navigated a divorce. They're not
there anymore. And it is so disc bobulating. It's like
you're you feel like a little chick, like out of

(25:05):
the nest.

Speaker 2 (25:05):
Again.

Speaker 3 (25:06):
For me, it was the trick of like suddenly realizing,
oh shit, so I'm just making this up as I
go along, and it seems to be working out. But
that means that they've been making it up as they
go along.

Speaker 2 (25:19):
What yes, I thought they were reincharge.

Speaker 3 (25:24):
No, they just confidently chose and went I'm just going
to do this exactly. Like that's kind of how things unlocked.
I do want to get to the white knucklelye on
your knees part, but they would be remiss to not
talk about this. But so, the system is what it
is in Australia. It's not a perfect system, but holy moly,
it is way better than many, many, many, many other countries.

(25:44):
It's a superpower that we have, right, But it does
rely on the patient to connect the dots. And if
you don't know that as a patient, you'll be sitting
around for six months wondering why the phone hasn't right
because I'm waiting for a specialist to call. The appointments
go to the person who calls. All right, So what
would you have to say to people about advocating for

(26:04):
themselves firstly, and then advocating for a child or somebody
they're caring when it comes to the Australian healthcare system?

Speaker 2 (26:11):
I love this question, so I think about it.

Speaker 3 (26:14):
I say that like you've been asked it before, and
here I'm thinking that I'm no, I've come up with
something cool.

Speaker 1 (26:19):
Let me tell you why I love it because I
totally talk out on healthcare system stuff and it's not
usually the things that people want to talk to me about.

Speaker 2 (26:27):
That's why I love it.

Speaker 3 (26:28):
But this is the stuff that people. Yes, your lens
to this issue is through caring for your own father.
But people who are listening, you know, they've got a
kid who's like, oh, hang on, there's a you know,
there's a bit of a speech thing going on here,
and I've got to get a friendly them release and
they've got to hang on. That means I've got to
get two of these and one of those and I've
got to go see that person. I can't get in there.
It's seven months. It's just somewhat closer. There's a nithissist

(26:49):
bills that hang on, that's not coming away with the
what yes, you know, it's so trying to get your
kid to say, yeah, yeah, that's right.

Speaker 2 (26:56):
That's exactly right.

Speaker 1 (26:58):
And I'm still navigating the system now, got a neurodivergent child.
We've just had all of those diagnoses, so I am
I'm still navigating the system. And so look, I second you.
We have one of the best healthcare systems in the
world and it's complicated and challenging to navigate. So the
more health literate we are, the better off we are.
I like an eye healthcare system to lego. So lego

(27:19):
creates the blocks. They're all designed to fit together. There's
different colors and shapes and sizes. You are the person
creating the design based on your diagnosis, your prognosis, your age,
your stage where you live, the services available to you.
So it's your job to make them fit together in
the way that you need to. So you've got primary care,
so people like your GP, people that you see when
you kind of got a cold or you need a

(27:41):
referral or.

Speaker 2 (27:41):
A script or whatever.

Speaker 1 (27:42):
You've got allied health the people that support them, so psychologists, psychiatrists, pharmacists,
all of those sort of health adjacent services. And then
you've got acute au tertiary care, which includes like specialists
and what have you. Right underneath that is like the
determinants of health, so things like education and employment and
geography and like, there's lots that go into it, right,

(28:03):
So even just hearing those few things, the way that
you play with your lego in Wogga Wogga is going
to be completely different to how somebody in the Eastern
suburbs of Sydney with a completely different diagnosis, how they're
going to have to put their lego together.

Speaker 2 (28:18):
So you're absolutely right.

Speaker 1 (28:19):
And I always say to people, your care is your responsibility.
So you need to make sure that you are on
top of your appointments, that you are on top of
your follow ups, that you are grabbing a copy of
your results. They are your results. They belong to you.
Never leave an appointment without having either get them to
print it out, get them to email it to you,

(28:41):
make sure that it's in your inbox, that all belongs
to you. And that really surprised me with Dad. I
would go into these appointments Dad, use the public systems. Obviously,
we have the public system and the private system. If
you have private healthcare, you have the choice of both.
If you don't have private healthcare, then you have the
public system. I kind of liken that to economy and
business class, but it's a poor analogy because the care

(29:01):
that you get in economy the public system is not
necessarily worse than what you would get in the private system.

Speaker 2 (29:07):
You just might get a nicer.

Speaker 1 (29:08):
Seat and you probably get to board first, so you
might get services more quickly. So the system is what
the system is, and it is up to us to
be able to navigate it and then advocate for our
people within it. And advocacy is really really interesting to me.
There are two key parts. I think one is being
really clear on what it is that you're advocating for,

(29:31):
so what the goal is, and I kind of think
about it like this. Imagine that you are at a
football match and people, the players run onto the field
and everybody's hooting and hollering, and they start passing the
ball to each other. Coming down the field, they get
to the other end and they stop and they start
looking around. They look really confused, and you look down
at the field and you realize that it's because there's
no goals. There's no net, there's no hoop. They don't

(29:54):
know where the goal is, let alone how to win
the game. So if you don't know what it is
that you're advocating for four, then you're totally lost. But
the second part of that is having the skills to
be able to deliver on that advocacy, and those are
like high order executive function skills. They're having good communication skills,
good negotiation skills, building solid relationships. You want your healthcare

(30:18):
providers to like you, because if they do, they'll be
more likely to go above and beyond for you when
the time comes.

Speaker 3 (30:24):
A standby list does pick itself exactly.

Speaker 1 (30:26):
And if you have to call Rosie on reception every morning,
every single morning and say, hey, just letting you know,
I'm still waiting for a spot on the wait list.

Speaker 3 (30:36):
I'm free between two and four, exactly what i can
make today just.

Speaker 2 (30:39):
In case anything comes up today.

Speaker 1 (30:41):
Because if you spoke to Rosie six weeks ago and
she said, yeah, yeah, I'll put you on the wait list,
chances of her remembering are really slim.

Speaker 3 (30:47):
And if you're a bastard to Rosie, not a chance
Rosie might not call you back.

Speaker 1 (30:52):
Exactly. You want Rosie to adore you. You want to
go in and say, hey, Rosie, thank you so much
for squeezing me in today. That really means a lot
to me, Like know her name, thank her. They don't
get a lot of thanks. I don't know if anybody
else has noticed this, but often now you go into
an emergency department or even just into a general practice
clinic and it says like, please be kind and respectful
towards our star.

Speaker 3 (31:13):
That's sign on the wall. It's like who comes here
and yells at the person behind the counter.

Speaker 1 (31:18):
And it must happen all the time, right, you know?
So I would say, for people trying to navigate it,
you need to try to work with Rosie. So I say,
Rosie's telling you this just happened to me the other
day with my daughter. Let's say that she's saying that
she's got no appointments for nine months. You really need
your daughter, or your child, or your partner whatever scene
way before then. So what I would be saying to

(31:38):
Rosie is, hey, Rosie, let's take the appointment for in
nine months. That's great, thank you. Please, could we be
put on a wait list if anything comes up sooner?
We would love to be considered. I live ten minutes away.
I will drop anything and come so you can call
me really last minute. I'll pull my kid out of
school and we'll be here. Or I work on Wednesdays

(31:59):
and cannot do Wednesdays any other day. Whatever your parameters are,
give them to Rosie really nicely. Try to get her
to work with you, because and then I suppose I
would also be saying to Rosie, we really need to
be seen before. Then, Are you aware within this clinic
or anywhere else of anyone maybe who has trained more recently.
Their books aren't as full. Is there anybody else that

(32:21):
you know of? Do you have a list of providers?
Is there anything else that you can help me with?
And if you're lucky and Rosie is kind, she will
work with you. So let me give you this example.
Finding a psychiatrist for my daughter.

Speaker 2 (32:33):
I called.

Speaker 1 (32:35):
I found about a dozen online pediatric psychiatrists in Perth,
where I live. I got to about number six, and
all the first five were flat out nos, no help,
no suggestions, nowhere to go, just no books are closed
the end, goodbye. And the sixth person said to me,
I'm so sorry our books are still closed. However, call

(32:56):
me back in a week and I will reassess. If
you keep please feel free to keep calling me and
give me your email address, and I'm going to email
you a list of pediatric psychiatrists in Perth so that
you can start going through them and crossing them and
not have to like hunt on Google and not sure
if I've called that one or not called that one.
That woman I never even ended up seeing somebody in

(33:18):
her clinic that was so helpful to me, that delivered
so much value to me. And I think that that's
the argument for being kind, using good communication skills, building
good relationships. And I'm so grateful for her because eventually,
on about the eleventh one, I did find one. I
still had to wait nine months, it still cost a
small fortune. She's still getting my daughter's name wrong in

(33:39):
her but whatever she's been seen, she's been diagnosed, she's
been prescribed. That's what she needed in the moment. And
that's what advocacy is. It's knowing what you're advocating for
and then having the skills to deliver.

Speaker 3 (33:54):
Just a moment away from Casey to say that if
you are in Sydney and want to come to a
live gig gigs with story Club every single month October twelfth,
November seven, December nine, I'm pretty sure those are the
days on sale right now. Linkers in the show notes,
the October gig is going to be an absolute crack,
a huge lineup, s Truthless will be there. Speaking of which,
he's the man that I worked on my new book with.

(34:16):
You can get that new book right now. So what now?
What the linkers in the show notes for that we're
back with Casey Barross. In just a moment when I
was going through the chronic of business and pain stuff,
I yeah, things were really bad, really really bad, and
just desperate. I called the pain clinic at RPA and

(34:41):
they said, yeah, we've got nobody for like ten weeks.
And it was it was so catastrophic. I was the
thoughts of self harm were showing up again. I was like, oh, man,
I can't do this again. No no, no, no no. And
I said, okay, ten weeks, like you just said, look,
I'll take it. I'll take ten weeks. But is there
anything you can give me? Is there any psycho education?

(35:03):
Are there any videos or podcast or books or anything
you can send my way to get because ten weeks
is a long way when ten minutes is I can't
draw breath. I was doing that when the pain was
hitting me. What can you give me? Bless them. They
sent me like a couple of quick YouTube videos and
a few little things to read and a bit more

(35:24):
nerdy stuff around, you know, the research of which we
can talk about this if you like, about the effect
that careers can have on the pain of the patient.
And that alone was giving the feeler ah, they care
about me. This gives me just enough to make it
from here to there. What resources? What are they gonna

(35:44):
talk about in the first appointment? What are some things
that you recommend. I don't want to be like listening
to some person who's just talking at a camera on
YouTube for an hour and twenty minutes not tell me anything.
What do you recommend? What are the books that you know,
you recommend that they would otherwise give me on the
day that I can get into now. And these are
sort of things that you can you can do. The
catastrophizing of the care of stuff that blew me away

(36:05):
because that was around kids with chronic pain, and the
research has proven that if the care is catastrophizing about
the pain of the child, it increases the pain of
the child. It was not amazing. It was his lecture
at Harvard and it was apparently reputable place, you know,
but it blew my mind that a care they're doing

(36:29):
everything they can, but in doing everything I can and go,
oh no, Jenny, they're teaching Jenny, this is a terrifying,
fearful thing, and the care can actually degrade the experience
of the person they're caring for.

Speaker 1 (36:44):
It's true, and there's this amazing research. It was a
guy called Professor James Cohen, and he's a professor of psychology,
and he was studying PTSD and he was running MRIs
on brains to see what happened for people with PTSD.

Speaker 3 (36:59):
Postraumatic extreme disorder post traumatic strat residence imaging. Yes, so
that is a thing scan. Yeah, it's it's a very
it's one that sounds like scrill X. You're in the tube.

Speaker 2 (37:07):
And he got exactly right.

Speaker 1 (37:10):
And he had a Vietnam vet from the war come
in and he was so terrified of the noise that
he couldn't undergo the MRI.

Speaker 3 (37:19):
So you need if you are having some sort of
joint issue. It's better than an X ray. It's you know,
they slice it. They can diagnose a lot of world
of things.

Speaker 1 (37:26):
Yes, And so the researcher, James Cohen, said that his
wife could come in and hold his hand, sit on
the outside of the machine and hold his hand so
that he could undergo the test. And what he saw
on the MRI was the simple act of her holding
his hand had the greatest impact on exactly those centers

(37:48):
of the brain, the fear centers of the brain like,
it really calmed him down, and that wasn't specifically what
he was looking for. That was a bit of an
anomaly that she would come in and hold his hand,
but it made him set up a whole nother study
where he specifically wanted to see whether care could kind
of act as medicine. So he got a whole bunch
of people to come in and have the exact same

(38:09):
thing done.

Speaker 3 (38:09):
But this an FMR. The functional magnetivis that's the brain one, correct.

Speaker 1 (38:13):
So within a functional MRI, if you apply stimulus, you'll
be able to see that light up on the scan.
So he set up another test and he showed people
one of two slides, one was red and one was blue,
and if they saw the blue slide, they were getting
no electric shock, little baby electric shock. But if they
saw the red slide, it was that there was a

(38:34):
twenty cent chance that they would get a small electric shock.

Speaker 3 (38:36):
I'm assuming this is not like a sixties level experiment
where they really fucking did you. It's just like probably
like a bit of a tens machine tinkle, Yes.

Speaker 1 (38:44):
Exactly exactly, but I suppose it was about the anticipation of.

Speaker 2 (38:49):
Right.

Speaker 1 (38:50):
Then they put them into three groups the participants into
three groups. One group came in completely on their own,
one group came in and had a complete stranger hold
their hand, and the other group came in and had
their spouse hold their hand. And what was really interesting
was in the group who didn't didn't get an electric shock,
they were much calmer, much cooler, no dramas when their

(39:10):
spouse was holding their hand, a little bit of an
impact when a stranger was holding their hand, and a
little bit more anxious and nervous if they were completely
on their own. But what was most interesting was that
for the people that did get the electric shock, the
pain didn't register as much in the brain for the
people who were holding their spouse's hand. And what James
Cohen ended up terming it was that it had like

(39:31):
a mild anesthetic effect on the person whose hand was
being held. So even if they did get this little
baby electric shock, they didn't feel it as much as
the other people because this person that they loved dearly
was holding their hand. And that's such a beautiful kind
of analogy for how care really can be medicine.

Speaker 2 (39:49):
And I think I saw that with Dad. That's why
those people said.

Speaker 1 (39:51):
He got longer because you were around and so many
people don't have that.

Speaker 3 (39:56):
So that's guy there. And my third metacarple. I broke
it snowboard in Canada in two thousand and four. I
was there by myself and I needed to get it repaired.
I had to go into surgery on the other side
of the world. The doctor did a nerve block, so
I had my arm out like this. I was lying
down and the nurse was here on my right hand side,
and so I was waking through the whole thing. I said,

(40:17):
could you hold my hand please? And she said, yeah, sure,
and she held my hand. Yeah, And it made such
a difference. It was so lovely. You talked about being
on your knees and white knuckling things. When you are
caring for someone, you do have to care for yourself.
Can't pour for an empty cup, all that business there.
Talk to me about stones and boys, the framework around

(40:40):
your coping strategies.

Speaker 1 (40:42):
Well, we all need coping strategies, right. Life has stuff
that requires coping. And I think that if you imagine,
whenever we do kind of swimming lessons or any kind
of water safety at the beach, people will tell you
that if somebody is drowning, or they're fearful and panicked
them sadly, what will happen is that they climb onto
the closest thing to them, which if that happens to

(41:04):
be another person, then the person who is trying to
save them perhaps can drown in the process.

Speaker 3 (41:11):
Mate, I've voiced over every one of them exactly, so
that Harries pushes them away so he doesn't.

Speaker 2 (41:16):
Get drowned, exactly.

Speaker 1 (41:17):
So that's why you'll see they come up from behind
them and grab around their shoulders and then kind of
pull them backwards. So that that for that exact reason,
and that is sort of what it can feel like
when you are caring for somebody, particularly, I think somebody
who is dying, they can be panicking and trying to
climb onto whatever is steady.

Speaker 2 (41:36):
Yeah, exactly exactly.

Speaker 1 (41:37):
And so you know, I think for it is so
easy for me to now sit on the other side
of this and say I really should have taken better
care of myself.

Speaker 2 (41:47):
But I think if I had heard.

Speaker 1 (41:49):
What I'm about to share, I would have been like,
I'm gonna send that chick a sternly worded email.

Speaker 2 (41:54):
She has no idea what the pressure is like for me.
I don't have time to take care of myself.

Speaker 1 (42:00):
So I'm just going to put that little disclaimer in there,
because I know how hard this stuff is to actually implement.

Speaker 2 (42:05):
But I started thinking about.

Speaker 1 (42:07):
If you were in water that you couldn't stand in
and somebody threw you a stone, you would sink.

Speaker 2 (42:13):
But if somebody through your.

Speaker 1 (42:14):
Boy a booie, if you're American, you would float. You
would float for long enough to be able to work
out what to do next. And I think for all
of us, we have not so great coping mechanisms and
so much healthier coping mechanisms. And I'd like to think
that as I get older, I get better and better
at getting rid of the unhealthy ones and better at
championing the healthy ones and the unhealthy ones. The stones,

(42:38):
the ones that weigh us down are you know, things
like drinking too much alcohol, taking illicit drugs, having sex
with strangers, buying too much stuff online that we don't need,
all of you know, smoking, vaping, sitting too much, eating
too much.

Speaker 3 (42:53):
Australians lost twenty three billion dollars on poker machines in
the three months to June of this year. Wow three billion.
That is ninety days, a million dollars an hour. Oh
my gosh, I slapping the pain away, right.

Speaker 1 (43:10):
And and you know, for people who aren't gamblers, doom scrolling,
same thing, exactly the same thing. Like your brain is
lighting up like the slots when you are, you know,
constantly feeding it.

Speaker 3 (43:19):
Not quite enough.

Speaker 2 (43:20):
Yeah that's right, not quite there.

Speaker 3 (43:23):
Yeah, Scrolls, I'm sure I see you somewhere.

Speaker 2 (43:26):
Damn you, infinite scroll whoever came up with that. Honestly, Oh,
they're regretful.

Speaker 3 (43:30):
They're in the documentary.

Speaker 2 (43:31):
That's the worst thing.

Speaker 3 (43:32):
I'm so sorry. That's right, it's true, fair enough.

Speaker 2 (43:36):
So so stones.

Speaker 1 (43:37):
You know, they're they're pretty obvious, they're the thing, but
they're the things that we think make us feel better
in the moment I need a little bit of escape.
And you know, for me, one of my famous stones
was alcohol. During that time, my dad and I love
to have a Campari soda together. It was like a
moment of cheers of like you're still here. I'm still here,
We're still here. Everything's okay.

Speaker 2 (43:57):
And in the moment it felt good, like what I deserved.

Speaker 1 (44:00):
I felt like I deserved a parade after getting through
one day with small children and an aging father, So
you know what was one little campari, So it's gonna hurt.

Speaker 2 (44:10):
And then I suppose.

Speaker 1 (44:11):
On the flip side of that is boys the things
that lift you up. And I wish I could sit
here and say here's the silver bullet, And unfortunately it's
the same old, unsexy stuff that has always lifted us up.
Eating well, taking care of our mental health, having some
kind of mindfulness practice or some kind of moment of pause,

(44:32):
making sure that we're not, you know, doing all of
those negative things, and not drinking too much, staying really
connected to our friends and our family. Those really are
the things that, sadly, that do they lift us up.
You know, there's no pill, there's no potion. There's certainly
pills and potions that can help, but generally speaking, it's
the un sexy, boring ways of looking after ourselves. And

(44:55):
I know for a fact that there's no way that
I could have, you know, pulled on my sneakers and
gone to the gym and done an hour long workout
like some days.

Speaker 2 (45:02):
That just wasn't possible. But what is possible is.

Speaker 1 (45:05):
That I could have put on my sneakers and run
up and down Dad's stairs twice. That I could have done,
and I wish, I wish, I really do wish that
I had done a better job of doing those using
the boys more because you know, I quit alcohol about
eighteen months after Dad had passed away, and you know
it took me till I was forty. It's like, hands down,

(45:27):
the best thing that I have ever done, Like somebody
switched my TV from black and white in living color.
And all of that said, I understand that when you
are in the trenches of caring for someone, it might
not be the right time for you to overhaul something
or change something. You need to lean on what you
need to lean on. But the honest truth is that
if you go down, then there's nobody left to do

(45:47):
the care. Like we have to have to do a
better job of care for the care.

Speaker 3 (45:52):
You only have so much to look after your own self.
You're immediately halving that because you're looking out another person.
And every one of those things you've just described will
deplete your ability to function properly. For no matter how
good or about it makes you feel, it's going to
every one of those has been dig documented to be

(46:12):
not good as far as trying to get to outcomes
that you want, and so you're already operating on fifty
percent capacity minimum. If there's other kids involved, youve probably
got about ten percent left for you if you're going
to fuck with that ten percent by and you said
Arkampari couple, Yeah exactly, because you don't count. You don't

(46:34):
count the shots that you have in between you and order.
You count the extra tub of ice cream that you
have after you've already eaten Issert because I'm sitting here
watching another episode of CSI, you know, because I'm just
spitading time for myself.

Speaker 2 (46:47):
That's right, this is my reward.

Speaker 3 (46:49):
It's midnight and now it's one, and someone's going to
be awake in two hours upset with something, especially got
little kids. Yes, yeah, Eventually it's going to run out
on everybody and it's all going to fall to pieces,
particularly if you're the one that's looking after it. It
can happen. It didn't happen to you because you were here,
but it can happen. That people sometimes can define themselves

(47:15):
by this role, and there can be a bit of
I'm not saying Munchausen, but a bit of martyrdom about it,
which can It's seductive because it justifies well, of course
I'm upset because I've got this and you've got that,
and they haven't called me back in six months and
I can't get an a point with a pediatric on
college just or whatever. Yes, and that can lead to

(47:36):
a justification of poor behavior. But what can often happen
is then that it just makes everything worse. It feels
right because you're upset, you're angry. Somebody loves in trouble.
They might not get out of it. You don't know
what that's going to look like. Talk to me about
the idea of going to part of that care being

(47:57):
perhaps therapy. You're going to talk to someone that isn't
a friend, someone that might be able to see, Oh,
you are staring out the windows, just smoking, Sicki's all day,
not great. Let's just maybe do that for maybe twenty
minutes tops, and then maybe go for a walk in
the yard you're looking at. Let's just start with that.
Tell me about the idea of seeking therapy or trying
to get another perspective on what you're going on when

(48:18):
you are dealing with a situation like this.

Speaker 1 (48:20):
Yes, and I must say that care can become your identity.
I do think that that happened to me, and I
did wear my care maybe not as a badge, but
something a bit more subtle, like a sticker, like a
sticker of honor. And you know, there's often, if you're
lucky as I was, there's a lot of love and
care coming your way. People are worried about you, they're
checking in on you. And one of the things that

(48:42):
tends to happen to care is when they are on
the other side of caring, maybe their person is no
longer with us, maybe their person got better, whatever it
might be. When they're on the other side, they tend
to feel quite kind of purposeless and rudderless because they
were doing this really purposeful, meaningful care.

Speaker 3 (48:58):
Look, decisions need to be made all day long.

Speaker 1 (49:01):
Yeah, that's right, and then all of a sudden it's
free stimulating exactly, all of.

Speaker 2 (49:04):
A sudden, they're not. And so, you know, I think.

Speaker 1 (49:08):
We need to do a better job of in terms
of policy and reward and making sure that carers are
like really really well championed and really really well supported.
And I know the exact type of people that you're
talking about, and that they do kind of use care
as a bit of a badge.

Speaker 3 (49:29):
Of honor, but there's also patience. It's also people. And
when I speak about mental health in the in the
you know, in public, when I did public speaking and
stuff like this, I always talk about like, it's your
job to take responsibility for it. Yes, it's your job
to go to the doctors, it's your job to take
the beds, it's your job to do the things they
tell you to do. You don't get to say, oh,

(49:50):
I'm sorry, I'm rude because I've got this. You just
have to deal with it.

Speaker 2 (49:53):
No, Yes, that's right.

Speaker 3 (49:55):
You are a human that lives in a society and
you need to take responsibility for what you've got going on.
But people may not realize that's what I'm saying. So
that's getting help for yourself can be I don't feel
maybe people maybe say that they're not worth it, or
they don't have the time it. Certainly finances can be hard. Yes,
where's the value? Where do you find the value in

(50:16):
making sure you're getting some sort of check in with
a therapist or psych along this journey.

Speaker 1 (50:21):
I think there's huge value in that. And you mentioned
a good friend, and good friends actually can play a
really powerful role if you choose the right one somebody
who is who knows when they're out of their depth
and are able to say to you, I don't think
I'm the right person to support you on this. I
think you actually need professional help like I did. You
can lean on people that you know specifically have been

(50:43):
through that thing, so they've actually got some lived experience.
And the reason that I say both of those things
up front is that we have a real equity problem
in this country in that if you or I are
struggling with our mental health, we have the knowledge, the
wherewithal the get up and go that it's our responsibility,
and we have the resources to facilitate that. And we

(51:03):
will call six psychologists until we find one that can
fit us in, and we will call again to see
if we can get in sooner. And if we get
really desperate, we know that Beyond Blue or Lifeline or
one of those services is available to us. And I'm
super mindful that not everybody across this country has those things.
Ye that don't have the literacy, that don't have the knowledge,
that don't have the impetus, and they don't have the

(51:24):
resources to be able to facilitate that. To spend three
hundred bucks seeing a psychologist, and as anybody knows who's
seen one, you're going to spend the first two or
three sessions just downloading all of your story so that
they understand.

Speaker 3 (51:35):
Figuring out of the right person for you as well,
do we click here exactly? You got to audition them
or date them like Digui we audition them definitely.

Speaker 1 (51:44):
You've got to figure it out, definitely, and it can
feel like the need is so immediate by the time
you're waving the white flag on your knees. I need
to see someone now, and then you're having to make
seventeen phone calls and the next one that you can
possibly in four weeks or if you're really lucky, maybe
a couple of weeks. And this is particularly bad for

(52:05):
people who live regionally. We're very lucky we live in
capital cities. People who live regionally really really struggle with this.
And we've got a few issues with telehealth. You know,
it should be much much more inclusive, but you have
to have seen in person the doctor in the last
twelve months before you can then have a tellyhealth like.

Speaker 2 (52:22):
We've got some work to do on that front.

Speaker 1 (52:24):
So I think first of all is knowing when you
are out of your depth and you need especially in
a parent patient care relationship, you can't be everything to
each other and that can be really hard. If you
were really close to your dad or your mum, or
it's your partner, they were the person that you used
to unpack everything with and then all of a sudden

(52:45):
they can't be And this is where a care team
becomes really important. Like care truly is a team sport.
You might be the captain or the coach as the
care and your patient is your star player, let's say,
and that analogy, but then you've got all of these
other people, knowing who those people are, knowing how to
access them. You know, even just going and having a
really good chat to your GP. If you can't get

(53:07):
in to a mental health professional, just go and have
a chat to your GP. They're really really well positioned
to be able to support you. We have things like
Griefline in Australia, so for people who are experiencing grief,
knowing that those services are available and then having the
gumption to pick up the phone and say, hey, I
need help.

Speaker 2 (53:28):
Four of the hardest words for any of us to say.

Speaker 3 (53:31):
I was talking about this yesterday for some reason, when
it's and because I went through this when it's me,
I don't want to ask for help to deal with
this problem. Let's say I'm driving my family to the
Gold Coast right and we get a flat tire. Oh,
we'll pull over because it is no longer safe for

(53:52):
me because I can't I keep leaning to the left.
This is bad. Hold on, guys, which could pull over? Here?
Get out what I don't have the tools? Where did
the wheeljack? Kids have been playing with something? The jackson
in the car anymore? Fuck mate, you get on the phone.
We're not going to go anywhere. Let's move away from
the road, guys, Let's keep ourselves safe until we've sorted
this out. Yes, that's how you deal with that problem,

(54:12):
and anyone if not at just let me handle it
my way. I'm just going to drive all the way
over the Goal Coast until I'm just flying sparksan fuck.

Speaker 2 (54:21):
No, no one would do that exactly.

Speaker 3 (54:22):
But for some reason, that's what we do when it
comes to a mental health. But getting ahead of that,
as you mentioned, not in six months when you need it.
Like I would say, if you find yourself in a
situation like you'd find yourself where I am now in
a caring role. I am you know. The way that
my life was going to play out is no longer
what it is. And I am understanding that there is
an escalation of intensity in this, particularly if it's something

(54:45):
that's terminal. I understand that at that point you're not
only getting their care lined up, get some care for
yourself and pop it in there, pop it in the
calendar as well. Get in there, Get in there now,
not six months seven months from now, when you are,
you know, on sports bed at six in the morning,

(55:05):
Jimmy's bringing all day and night.

Speaker 2 (55:07):
That's exactly right.

Speaker 1 (55:08):
It's wild to me how bad we are at anticipating, especially,
you know. And this is where a good social worker
at a hospital or something is worth their weight in
gold if they can say to you, I anticipate that
there are some stormy seas ahead regardless of how this
plays out. Don't worry about the prognosis or like the

(55:30):
timeline or any of that. Regardless this is going to
be really tough six months or twelve months or whatever
it is. My advice to you is to engage with
service X now and get them in play. And that
is where you know, and again It comes back to that,
like care is a team sport, and social workers can
play a really important role in that, particularly in hospitals.

(55:51):
They're incredible connectors to services, and there are services available
to us.

Speaker 3 (55:56):
But you might not realize it's there if you don't
ask what else is here? Is there someone I can
speak to about diet? Is I don't I've only ever
cooked this person, but now it looks like because their
bowers are working differently. What are some things I should
and shouldn't feed them? Is there a dietitian I need
to speak to, like or not even to know that?
You know, I don't know what this looks like. I've
never looked after someone. I'm moving them to my house.
Do I need a ramp? I don't know? Is there

(56:18):
someone I can talk to about this? I don't want
to be making it up and make the wrong call.
There are people in those places whose job it is
to come and help you, But if you don't ask
for it, everyone's busy. Yes, systems a stretched no matter what.
It's a public system. It's not perfect, but it's freaking amazing.
So it is on you to kind of ask is
there more that not? As in like gimme, gimme everything.

(56:38):
It's like, what else can I Years ago when I
first got taught about how to negotiate, it's like, as
long as you ask for something that they've already got,
it's not hard for them to say yes. You know.
The example was the company that God was working for
that they spend three million dollars a year on flights,
and this person was working in Singapore and said, part

(57:00):
of my deal, can I get you know, two return
flights twice a year back to Sydney so I can
see my parents. They're like, what's an extra twelve hundred
bucks and three million? Of course changes. He is complete
if he's going to say yes to the job or not,
because it's no big He can get home twice a
year at least to see his folks. But it was
nothing for them to say yes. So what can you

(57:21):
ask for that's already around yes, that you can get
access to. It's on you. You're you're the executive producer
of how this exactly, how this works?

Speaker 2 (57:29):
Exactly?

Speaker 1 (57:29):
It comes back to you're in charge. No, there's nobody
else in charge running the show.

Speaker 2 (57:34):
It's you.

Speaker 3 (57:40):
During this conversation we have, you know, we cannot forget that.
Over the course of your experience your father died, tell
me about how preemptive grief can start to play a
role in the way that you are able to show
up and be present in those moments.

Speaker 2 (58:00):
Oh, preemptive grief.

Speaker 1 (58:01):
I thought that it was a bit of a gift, actually,
because the opposite is grief, grief as in the phone
call that says sorry, they're on the golf course and
they're gone. So I always thought the preemptive grief would
be a bit of a gift. If anything, it was
going to be, you know, give me a little bit
of time to kind of get used to the idea,
And in some ways I think it did do that,

(58:22):
and nothing could have prepared me for the end, I think.
You know, Dad always said that people are very drawn
to the profound birth and death, and I think is right.
Death watching somebody die is a profound experience, something that
you are forever change for having had that experience. And
do you know what's really interesting is that my dad

(58:43):
signed up for voluntary assisted dying and we.

Speaker 2 (58:47):
Had the pharmacists come to our house.

Speaker 1 (58:50):
They bring over two kits, two red toolboxes, like they're
coming to fix the sink, and in one of them
is like a dummy kit of the real deal, and
in the other is the real deal. And so for
people who don't know, for voluntary sister die and you
can do self administered or practitioner administered, but you have
to choose. That's not something that you just get to
flip and decide on the day. And so they come

(59:12):
over to your house and they make you do a
dress rehearsal with the dummy kit where they make the
person who is going to consume eventually the liquid, they
make the mix the liquid and then drink the liquid
in front of all of you as though it's going
to end their life. It is the strangest experience I

(59:33):
think I've ever been through, like a dress rehearsal for
ending your life.

Speaker 3 (59:36):
It is really a very clever barrier to entry, because
if you can't do it yourself, you are not competent
to make the choice. You have to be able to
still be swallowing, because there's all sort of cognitive things
that have to be working for your swallowing reflex to
work exactly. So it's a very clever point at which
you can do that. It is and I listened to

(59:59):
that whole Denti podcast about it, and it was extraordinary, extraordinary. Yeah,
I'm so happy that it's here in Australia now.

Speaker 1 (01:00:08):
Same and I was always a real advocate for it.
I was so happy that it was available to Dad.
It felt like a get out of jail free card
that was in our pocket, so that anytime he wanted
to he could.

Speaker 2 (01:00:18):
Just hit that.

Speaker 3 (01:00:19):
So they left the Red Kit behind.

Speaker 2 (01:00:20):
They left the Red Kit behind. Wow, did he have
that high?

Speaker 3 (01:00:24):
Did he have that thing of like just knowing it's there?

Speaker 1 (01:00:26):
Yes, I think that gave him some real comfort. And interestingly,
I remember before they'd even left our house, he was like,
I need to go and have a little lie down.
He was really sleepy at that point, and I remember
looking at them and trying to say with my eyes,
because he was still in the room, I think we've
kind of missed the boat on this for a whole

(01:00:46):
range of reasons. Like you could see that he was
really sort of on his way out. And one of
the hardest conversations I've ever had to have with him
was that I'm nervous that the window of opportunity is
closing and you are going to have your choice taken
away from you, and I feel that perhaps we should
take the time now to switch to practitioner administered, as in,

(01:01:08):
have somebody come over and inject him. Because once you,
as you said, lose your swallow reflex, if you drink
water and cough, no, biggie, if you're drinking the liquid
that's going to end your life could be a really
big deal.

Speaker 3 (01:01:21):
Right.

Speaker 2 (01:01:21):
You don't want to go halfway on something like that.

Speaker 1 (01:01:24):
And so they were some of the hardest conversations I've
ever had to had to have. I remember going to
the GP and his GP saying have you said a date?
And him saying yes, and telling her what the date was,
and I think it was about two and a half
weeks away at that point, and she said, I don't
think you're going to make it to that date, and
seeing that land on him, Like talk about preemptive grief, right,

(01:01:48):
like you are. Sometimes you have three mini deaths by lunchtime.
In these situations, it's the death of their ability to
walk to breakfast, the death of their ability to even
want breakfast. You know, it's like this series years of
teeny tiny little deaths. And I will say that he
never ended up using the voluntary assisted dying. And as

(01:02:08):
much as I am so glad that we have it,
and I think it's a wonderful, wonderful gift to so
many people, the thought of having a day and time
in my diary that where my dad would die was
so anxiety inducing for me. But I never said any
of that to him. I was like, Okay, here we go.
If we're going, vad, we go VAD. And I just

(01:02:29):
pushed it all down and would have continued to and
would have been in the room and made it as
beautiful as he wanted, because that's what he wanted and
it's not my rodeo. But I was so glad and
grateful when the universe just took it out of our
hands and he died at home at a time that
wasn't in my diary, in a really beautiful way, and
I was able to be there and hold his hand

(01:02:51):
and everything that I wanted, and I was really glad
for that. So yes, I'm so glad that we had
the choice, and I'm also glad that that's not how
it played out for us, because thinking about going through that,
having watched the dress rehearsal, was actually really anxiety inducing.
So again, I think preemptive grief can be a real gift.

(01:03:12):
Gives you some time to get used to the idea.
You've got time to say all of the things and
do all of the things. That's the gift of a
poor prognosis or of a disease. You have time to
do the things. And nothing could have prepared me for
when he left.

Speaker 3 (01:03:29):
Momum would tell a story about a patient that she had,
and this is before any of the stuff was available
in Australia. It was an old Dutch guy. He was
just like, yeah, I'm done with this. Invited everybody around.
He was you know, he was competent, but couldn't walk,
couldn't toilet himself, Like, didn't everything hurt all the time,

(01:03:55):
Invited everyone around, all the round kids that had this
massive lunch, and after that he just stopped eating and drinking.
And three days later he was gone, Yeah that was it.
He was like, and he let him all know. He says,
I just want you to know. I'm just you know,
I've had a great time. You got he was in
his eighties. I've had a great time. You've been great,
but I'm ready. This has been a lot. Wow, thanks

(01:04:18):
for coming. You've been awesome and that was it?

Speaker 2 (01:04:21):
How powerful?

Speaker 3 (01:04:22):
Yeah, because so much of your power is taken away
at that point. Right to be in that situation where
I don't know, I get to make a call here yes,
and I get to be I can choose, you know.
So I'm grateful that we we do have that. There's
a part of grieving that you talk about. There's stages
of grief. We talked about bargaining earlier. Making meaning is

(01:04:46):
an important part of grieving. You know. How did that
play into this for you?

Speaker 1 (01:04:51):
Yeah, it's really interesting. I mean, lots of us will
be familiar with the Elizabeth Kopler Ross model, and it's
that dab DA is the acronym so denial, anger, bargaining, depression, acceptance.
And I think we think that when we are either
the person who is going through the thing or the
person watching and caring for the person going through the thing,

(01:05:13):
that we will move through those sort of sequentially or
in some kind of linear sessions.

Speaker 3 (01:05:17):
By the way, did you there you go? Lisa's im said,
first talk to me about it, Yes, there you go.

Speaker 1 (01:05:25):
And I do think it's a really I think it's
a really powerful model. It's and I think she herself
would say these were never intended as stages. That was
never how it was presented. It's just how the media
picked up on it and reported on it. And David Kesler,
one of her colleagues, has since added this this kind
of sixth stage, and I think it's that word stage

(01:05:46):
that's probably causing some confusion, but that adding meaning having
some kind of reason for this experience, for that person's life,
and finding what that meaning is.

Speaker 2 (01:05:59):
And I feel very lucky.

Speaker 1 (01:06:01):
I feel like I've always written about the hard things
that I was going through.

Speaker 2 (01:06:06):
I've built a.

Speaker 1 (01:06:07):
Career out of that, and I feel so lucky that
I got to capture this experience for myself, for dad,
for my family, but also for other people to kind
of share in and learn from, and so for me.
You know, there's this beautiful death walker. Her name is
Zenith Farrago. She's a really famous death educator in Australia.

(01:06:29):
And I remember her saying to me, we kind of
try to quantify somebody's life, as in, if somebody died
at sixty sixty eight, my dad was sixty nine sixty eight.

Speaker 2 (01:06:43):
Gosh, how weird is that? Like kind of even.

Speaker 1 (01:06:47):
Wild he was he was sixty eight he was sixty eight,
and he was almost sixty nine. He really wanted to
be sixty nine when he died, and he almost almost
got there. And you know, when when we look at
like the meaning that he was able to apply to

(01:07:07):
his life. What Zenath was talking about about quantifying a
life is that who's to say that sixty eight is
not enough? I say it's not enough because I want
to dad around for twenty more years. But what she
says is that when you do that, and whether somebody
died at sixty eight, forty eight, twenty eight, eighteen eight,
it's like those things get progressively sadder, you know, the

(01:07:29):
younger somebody is because they should have had more time.
And she says that what we do when we do
that is that we take away the fact that their
life was their life. And if you and this is
much easier to apply when people are older than it
is to children. And I don't purport to understand what
that's like. I haven't been through that, what I imagine would
be the most awful pain of all, even losing a child.

(01:07:53):
But what you do is you take away everything they
did have and everything that they did achieve, and everything
that was the meaning of their life and the birthday
candles that they did get to blow out, and the
times that they brought joy and made you cry laughing,
And so I have tried really hard to hold onto that.

Speaker 3 (01:08:11):
Now.

Speaker 1 (01:08:11):
Actually, yes, I feel pissed off that my kids don't
have their papa and that you know that I didn't
get Dad for more time, but I got almost forty
years with my dad. So I tried really hard to
hold on to that and to make sure that I
don't that I don't do human disservice in the you know,

(01:08:33):
who's to say that his sixty eight and magical, amazing
almost sixty nine years weren't full of meaning and purpose
and vibrancy and what he brought to the world. And
so I try really hard to hold on to that.
I suppose in terms of and everybody will make their
own meaning, and you know, this book is my meaning,
my interpretation of what Dad and I went through, and

(01:08:55):
other people will have that this.

Speaker 3 (01:08:57):
Book is the phone call that you made on the
day for people who don't have that person in their life. Yes, oh,
here's someone who's been through this experience. Ah, let me
see what does this book say about should I go?
Should I stay there. It is. That's the thing that
you've given. Speaking of things you've given, how has this
changed the way you think about the people in your

(01:09:20):
life that might step in to care for you. Let's say,
I mean I wrote a motorcycle here. Who knows how
I'm going to get home? All right? Everyone's expecting me
to show up at home fine and safe in a
couple of hours from now. I can't control the roads.
Who knows what what happens. They might not expect to
become a carer, but by tonight they might be. I
hope they're not going to be. But you know, there's
a possibility that it is true.

Speaker 2 (01:09:41):
Anything can happen at any time.

Speaker 3 (01:09:42):
It's true. I am fine with getting on my motorcycle.
Was I have locked away absolute, crystal clear instructions on
what happens. You talk to me about the importance of
taking the responsibility to do that not tomorrow now.

Speaker 2 (01:10:01):
Yeah.

Speaker 1 (01:10:01):
Yes, And look, this entire segment will be a fool's
advice because I admittedly have not got everything locked away,
which makes me the biggest hypocrite on earth. But I
want to acknowledge it because I know for so many
people listening to this they'll be thinking, I've got to
get back onto that, and it's always on you to
do this, but it gets bumped down for something that's
more immediate or feels more important, and it is the

(01:10:24):
worst decision you'll make. You know. I have spent a
long time now thinking about and writing about this exact thing,
and I always say, like, getting your legal and financial
affairs wrapped up is the greatest gift that you will
ever give to the people who love you, because what
it is, it's packing it all away, tying it up
with a bow, putting it under the bed, and it's

(01:10:45):
got a set of instructions inside so that Heaven forbid,
should anything happen to you in the future, somebody just
has to pull it out and they know exactly what
to do. And I can say, hand on heart, Dad
had a very straightforward a state, didn't own property, very
very simple. Five kids just had to pull it all together,
divvy it up, and that took me the better part

(01:11:06):
of a year amidst my grief and what we see,
or what certainly what my experience was you're climbing this
mountain of saying goodbye to them. Then you get to
the top and you're like, holy shit, there's another bigger mountain.
I just didn't see it because I was too busy
climbing the first one. And that one is like, I mean,
sitting in like the DMV or the Motor Vehicle Registry,

(01:11:28):
trying to transfer vehicle licenses so that you can sell them,
and going to the bank and taking things to the
pharmacy to be witnessed and like that stuff whilst you're
grieving is so rough. It is the last thing that
you want to be doing, and it often has to
be done in the time directly after somebody has passed away.

Speaker 3 (01:11:48):
Yeah. Also, the choices that are in the a Audrey
and I both have this is that for whatever reason
she or I become noncompetent yet are still alive. Or
there's a whole lot of instructions there as well. Great,
which is also superport because I've seen firsthand how that
can save the relationship of siblings completely. Oh yeah, because say,

(01:12:13):
for example, you know there's three kids and the person
is not competent, and there's an option of surgery, but
it's very risky, and say two kids say, I know,
I don't know what the surgery. One kid says, but
we have to whatever happens happens. You know, twenty years
later you wanted them to die, like if you just
get to look at a piece of paper and go. Actually,

(01:12:33):
they said, don't give us anything. Saved it completely.

Speaker 2 (01:12:37):
That's right.

Speaker 1 (01:12:38):
And care is a breeding ground for resentment within families.
You're so right, and so like here for people listening.

Speaker 3 (01:12:45):
Here a lot brothers just like five siblings, like that's
a yeah, and wat of mountains.

Speaker 1 (01:12:50):
My family tree is like an explosion in a pen factory.
I've got one ten years older. We've all got different mothers.
Dad was a bit of a free spirit, shall we say,
And so one is ten years older, and the others
are little like they were seventeen nineteen and twenty three
when Dad died. So they're little like the barely adults,

(01:13:11):
just sort of trying to live their lives.

Speaker 2 (01:13:15):
And you know, I think this stuff. I always say.

Speaker 1 (01:13:19):
Used to say to Dad, hard hat for hard chat,
and what that meant was and I would kind of
mind putting a hat on and it would be like
Dad time. It was essentially me stepping into like executor talk,
so like we need to talk about this hard thing.
And that was powerful for him. Because it was a
segue like, Okay, we're not gooey anymore. I need to
think strategically or financially or whatever. And for me, I

(01:13:42):
was able to say, I need to talk about this
really hard thing. There's no cool language around it. I
just need to be able to lay it out on
the table. But to come back to the non negotiable.
So here's like the hit list your will, which includes
an executor. My advice on an executor would be, don't
make it somebody who will be grieving you deep. Make
it somebody that you love, that you trust, that will

(01:14:02):
do it as a gift to your family, not the
person closest to you. That's just that's just my opinion.

Speaker 3 (01:14:09):
Right.

Speaker 1 (01:14:10):
Then your power of attorney, so enduring power of attorney.
So for people listening, power of attorney you can act
on your behalf whilst you're still alive, but say you're
on a plane and uncontactable, enduring power of attorney can
act on your behalf when you aren't no longer converse
so you can't make decisions for yourself. Then you can
also have enduring medical power of attorney, so they can
make medical and care decisions on your behalf. In some

(01:14:31):
states that's called an enduring guardian. And then the last
piece of that is an advanced health care plan or directive,
which is what you're talking about that spells out for people.
Here are the interventions I would be happy with so CPR,
cardiopulmonary resuscitation yes, artificial breathing and feeding no. So you

(01:14:52):
spell out so that, as you say, people don't have
to make those decisions. And what that does is it
just a limit dominates any confusion. It gives people absolute clarity.
And it's really interesting. What lots of the people in
that sort of intersection of healthcare and law are talking
about at the moment is like, in the future, will
you have an AI avatar of osher advocating for yourself

(01:15:18):
rather than somebody else having to do it for you,
And like, it's so fraught and it's so new as
an idea, But the idea is that you get what
you want, not what they think you would want. That's
the whole point of having those things in place.

Speaker 3 (01:15:33):
My recent experience with AI confabulation of databases would leave
me to think that that's not a good idea right now.
I agree, because my experience with llms has been to.
I just want to please the person that's asking me
this question. So there's makeup answers that aren't real. You
hang on a c I can't for me. Oh, you're
right to call me out on that. I'm sorry. It's like, yeah,

(01:15:54):
you're a supercomputer. There's wasting a billion tons of energy
every time I ask you a question. Come on, man,
supposedly on the top of it. But yeah, for now,
I'll say no to that, but I understand how it
may improve over time. I'm sure you, as you just mentioned,
you're looking for the you know when we asked, When
I asked you about the meaning behind this thing, I'm
sure you understand the meaning that you give to people

(01:16:15):
when you speak about this. And I'm very grateful that
you have chosen to do this, and you've chosen to
come here today to have this conversation. I hope it's okay.

Speaker 2 (01:16:23):
Thank you, you're okay?

Speaker 3 (01:16:24):
Have you feel all right? Yeah, okay. I'm glad. If
no one's ever thought about this sort of stuff, what
you've said to them today is incredibly valuable, and I'm
really grateful that you've done it. Thank you, Thanks for
coming in.

Speaker 2 (01:16:33):
Thank you so much for having me.

Speaker 3 (01:16:38):
That was Casey Beurris. You can get her brand new book.
It's called Next of Kin, A Compassionate Guide to the
World of Care. Fantastic conversation. It's important to talk about death,
you know. I know this. I talk about death quite
a bit and I hope that meant a lot for
you and I certainly got a lot out of that.
The book is fantastic, It's really really good. I thoroughly
recommend it. Thank you for listening to the show. If

(01:16:58):
you know someone that could benefit from this to the show,
please let them know about it. You can subscribe and
follow and rate and like and share. That would also
really help us a lot, and buy a book that
would also really help me a lot. The linkers in
the show notes for not only so What Now What,
but also the storytelling show that I do every month
in Sydney Story Club. I'd love to see you there.

(01:17:19):
Thanks for listening to the show.

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Caring for a Parent - Essential Advice from Someone Who’s Been There, with Casey Beros

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.css-14f5ked{margin:0;word-break:break-word;display:-webkit-box;-webkit-box-orient:vertical;box-orient:vertical;-webkit-line-clamp:2;overflow:hidden;}Caring for a Parent - Essential Advice from Someone Who’s Been There, with Casey Beros