November 12, 2024 • 34 mins
Join Paul Robinson, Communications Specialist, in conversation with Janson Hews, Director of Communications as Paul shares how he navigates caring for his two sisters whilst being faced with a new caring challenge in his family.
Paul and Janson demystify the assumptions about being a carer and how leaders can make a difference to employees who are carers. Paul also emphasises the need for people to have exposure to those with all levels of abilities, just like Tom Cruise in Rain Man.
In this heartfelt conversation, Paul and Janson discuss:
- How to shift perspectives about caregiving and the unseen burden it brings
- The crucial role that leaders can play in supporting employees who are carers
- A powerful reminder that “... one of the biggest things that any leader can keep in mind is that this person is going through hell right now. So, treat them like you want to be treated. And remember, tomorrow it could be you.”
If you're a leader, caregiver, or simply someone who wants to understand more about how to support those who care for others, this episode is a must-listen.
The Care for Carers podcast is produced by the Carers Inclusion & Diversity Group at the Parliament of NSW. The Carers group aims to celebrate, educate and highlight the complex responsibilities that come with caring for someone with a mental illness, disability or for an older person.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:00):
The Parliament of New South
Wales stands on the traditional landsof the Gadigal people.
We pay our respects to their Elders, pastand present.
We proudly acknowledge all the Aboriginalpeoples of New South Wales
and honour their enduring connectionto the lands, waters and sky of the state.
The representatives of the people of NewSouth Wales gather from various
(00:21):
Aboriginal lands across the stateto meet in this Parliament.
May the decisions made within these wallsreflect our commitment
to fostering a spirit of reconciliationand respect.
Let's get started.
(00:44):
Done.
Today's RUOK Day
Oh, good timing too. Yeah. It is.
Are you okay?
I am okay.
Thank you very much for asking.
It's been a good day.
So good.
And did you want to give a shortintroduction to yourself?
Yeah.
My name is Paul Robinson.
I'm a communications adviser.
Recently moved from the maincommunications team into Capital Works
(01:06):
and loving it.
And at New South Wales Parliament.
At New South Wales Parliament.
Yeah.
So today's recording is focusing on carersin particular.
We're looking at carers and careersas a, as a unique area of this practice.
So are you able to share a little bitabout your carer duties
and the needs of Vicor others in your life?
Yeah, yeah for sure.
(01:26):
So it's interesting.
I've got two separate experiences, very,very different experiences with caring,
a lifelong caring positionfor both of my sisters.
And then, recent an event.
Sort of thing that created an extra carerposition.
So the lifelong position ones,I've got two sisters.
(01:47):
I'm the oldest of four.
We've got two sisters in the middle,and, both have disabilities.
The one just below me. Carmel.
She has a really rare, disabilitycalled Williams syndrome.
There's not that much known about it,and there's not that many people
even in Australia with it.
So she has a has some unique abilities,in her disability.
(02:07):
Like she.
If she met you today, she'd rememberexactly what you were wearing.
Should remember every word you said,and she'd ask you questions about,
What do you know? Are you still this?Are you still that? You know?
Do you still listen to Hubermanand things like that?
Like we're talking about off air,offline before, she also has
her disability, has some limiting issues,
I guess you could call it, where she can'ttotally function in society.
(02:30):
She works at a special sheltered workshopwhere she packs boxes
and does all sorts of things like that.
So she's independent in a way like that,and she's quite excited
because she caught the Metro on herown the other day, and
she'll go into a shop, buya can of Coke and hand over $100
and not knowif that's enough or not enough.
She can't cook without supervision,
So she needs a lot of.
Yeah she needs a lot of support.
(02:52):
And then Melissa, the one below her,she's a bit younger than her.
She's, has down syndrome and she's
quite low functioning as well in the scalebecause down syndrome.
But you know, people,there's quite a big scale, a big range
of how capable they areat a functioning society.
Melissa,
her speechis probably the biggest limiting factor.
(03:15):
I can understand it, like she'sspeaking fluent English to me,
but other people I know really strugglebecause she does it.
Words are, quite mixed up.
Because you've been with her a whole lot
Yeah, exactly.
So I know what she's saying, and,
I can usually tell by the cheeky grinon her face, too, whether she's
okay if she's taking the Mickeyout of someone or not, and she.
Because she's a real character, she'san an absolute character, a real rat bag.
(03:38):
Everybody. You can't help but love her.
Yeah, because she's thischeeky little sort of thing.
Unfortunately, though, for Melissa,her health
has deteriorated quite rapidly.
In the last few years.
She started suffering from lateonset epilepsy,
and each with each seizure,she seems to have slowed down again.
And the medication that helps that isalso has some side effects as well.
(04:02):
So that is the those twothe lifelong chronic care inquisitions.
And then like I said,there's had been a recent event
that turned me into a different typeof carer, and that was with my wife.
She was diagnosed with a massive braintumor relatively recently.
Yeah, relatively recently.And they operated on it immediately.
It was so severe.
She was sort of under the knife.
(04:22):
Within a few days of the diagnosis.
They managed to get most of it,but they can't get all of it
because it's sitting on the carotid arteryin the brain.
So it's too risky for themto cut anywhere near that.
So that's caused a few issues.
Obviously, at the time around the surgery,that was character building experience,
(04:42):
especially from someonethat was so independent and so capable.
And she's fierce, you know, she'sfive foot nothing, but she's fierce
That's, to go fromthat to someone who needed someone around
her 24/7 was a big change for us,you know?
So and so you've you've grown uphaving a carer role
with your sisters, and now you've suddenlyfound yourself on a trajectory
(05:03):
where your caring responsibilitiesbecome all that more profound.
How's that relationship with your wifeand the role of a carer in that capacity?
And you talked about the fierceindependent.
How has that dynamic changed?
It's that's a really good question
because I kind of have to walk a fine linewith it.
It's fine to be the,you know, the protective husband
(05:25):
and you sort of you like that anyway,you know, I'm protective of her anyway.
I not that I need to be,but now I have to walk a really fine line.
Like, am I being her carer now and saying,no, stop that rest.
Do this.You need to go to this appointment.
All that kind of stuff.Where am I being a nagging husband?
You know, like which one?
I'm more doing? Am I crossing a line here?
(05:46):
Especially like we said,she is independent.
She is very fierce,super intelligent person.
Having someone
what's the right word for her?
Like babysit her is you can be,
tricky situation, you know that.
I don't want to cross that line.
I don't want her to feel like that,but I know I have,
because I've got the the look, you know,the look that's like, hey, watch it.
(06:07):
You know, I think soit can be an interesting experience,
but it sort of overtime, it's gotten easier.
Like a certain I can pick up now when
I'm starting to head towards being an nag.
She can do this. She's capable.
You've got responsibilities of careand that.
Yeah. Managing that work. So so on that.
What does it mean for you to be a carerand to give care?
(06:30):
It's about them really.
It's about I wanted Vicky to be ableto go back into her life
as quickly as she couldand as stable as she could.
So it's about thinkingabout what's important for them.
And like I get a kick out of it.
Seeing her improve and seeing her,it has given her
a new lease on life too,you know, so she wants to do more things.
(06:53):
Unfortunately, after the operation,there's been a few incidents
where she's going downhill rapidly again,because it was such a massive tumor
and she had it for so long.
There's a big void where the tumor was,you know, so her brain is reforming.
So this will go with time.
It's not a permanent thing for her.
I just want her to have her life back.
(07:15):
You know?
So say in that role in that,in the carer role
for Vicky, it's it's like I knowthere's an end to it, you know.
So it's more about me building,
some sortof gradient tapering away from that carer
role, letting her bethe more independent person.
Let her be Vicky again.
Yeah.
Because you know where this my sisters,that's that's not going anywhere
(07:38):
despite some of the formsI've had to fill in for NDIS
where it's like,you know, filling in this form:
Does your sister still suffer from downsyndrome?
WelI think we can safely say you cantick that box for the rest of her life.
And I saythat's a permanent sort of thing.
So that's not going anywhere.
I have to play that role forever.
Yeah. You know.
And there's probably an awarenessthat you've gained over time.
(08:00):
But in this particular instance withVicky, was there any preparation for that?
Like once
you found out that verdict, like were youthen given any support or advice.
So you had to just sort of.
Now had to wing it?I guess it's fortunate.
I don't know anybody else had sort of
had anything like thatand had to do with anything like that.
But I had to wing itand it was really hard
(08:21):
because I was even like the dayof the operation.
I was terrified, absolutely terrified.
I'm actually getting emotionalthinking about it.
It was really hard because I didn't knowhow she was going to come out of it.
You know? I didn't know if sheif she was going to come out of it.
So sorry. I'm getting emotional.
That's okay.
It was really difficult.
I didn't know what was going to happen.
I didn't know whether she'd come backbecause they'd warned me.
(08:43):
They the staff were fantastic.
They had warned methat this is really dangerous.
Yeah, there's some severe risksif we hit the wrong area or whatever.
So I just wasn't sureif she was going to come out, Vicky,
or she's going to come outa different version of the person.
You know, I knew
She must have been terrified.
Yeah, but she's like I said, she's ashe's a little warrior
(09:06):
I, you know, she was more worried aboutyou know, make sure you get your rest.
You make sure you do.
And but she was terrified as well.
She told me since.That was her way of dealing.
Yeah, yeah, yeah, yeah.Her way of dealing with it was
Making sure I was OK. Yeah.You know what? She's done forever.
And I say, look, I've told you offline
she cared for mewhen I had my PTSD issues.
(09:27):
She was a rock, you know?
And that's just who she is.
Now that role’s reversed,you know, the tables have turned.
Yeah, yeah,but you're back to your question, no
I didn't really have any idea what to do.
I didn't know what was going to happen.
I didn't know howshe was going to turn out.
I didn't know how much care she’d need.
Yeah.
Didn't knowhow long she'd be in the hospital for
because they didn't know either.
(09:47):
They were really unsure of like that.
They didn't really want to give me an answerin case it was wrong, I guess.
So how were your kids with it?
Oh they would.
They were a mess, I guess.
Yeah. Yeah, I've got two boys. Right.
So they're 22 and 20 now.
So at the timethey would have been 20 and 18.
But yeah they put on a really goodbrave front.
(10:07):
It was like they
I don't know if they got into a
little huddleand work it out between themselves,
but they, they, they held it togetherall the way to the night before the,
the surgery. Yeah.And then they just broke.
Yeah. And I on the day more phone was just,
they just spam me for a whilein the morning.
And then I said, look,as soon as I know I kept saying same.
So know I know anything.
(10:28):
I'll let you know.I'll let you know. Yeah.
But she was under the knifefor almost ten hours, so.
Yeah.
So they left me alone for a little bitand then the messages started again.
So they were they were really worriedand they just couldn't wait to get in.
and see her
Yeah the big tough boys and stuff.
But they, they love their mama.
And so, so she's come outand then what have you found
some of the challenges of being a carer.
(10:51):
In the first instance.
And then as it times gone by.
In the first instance,it was making sure she was comfortable
and making sure that I knewas much as I could to know
what to look out for, to know how to dealwith different situations.
If they came up what medicationsshe would need,
(11:12):
what kind of appointmentsshe'd be having. So.
So it was all, look, a bit of a logisticssort of thing that I was getting used to.
But there were some challenges
straight off the bat that she seemed good.
Like even straight off the operation,it was like
she woke up in a groggy,you know, obviously off her face on
(11:34):
anaesthetic
But she seemed quite good.
And it sort of surprised methat that someone who's been under the knife
like that after such a serious thingcould be quite well functioning.
They did keep her in a special
there's a it's almost like an ICU unitfor neurology patients.
And they kept her in thereand she was under observation.
Each bed has a nurse watching everything.
(11:57):
So it was really good.
I felt safe that she was there.
But then bringing it home, that was atotally different sort of thing.
I was like,oh my God, I have to be there 24/7
I have to watch everything that she does.
And it's almost like having a newbornin the house, you know?
Yeah, sort of checking everything.
And so that was a bit challenging.
But then I think the
biggest challenge with Vicky is one isshe'll be fine for weeks.
(12:20):
Yeah.
You know, and then all of a suddensomething will happen.
She'll go her issue with this brain,she's always been
going from sitting to standing.
She has a huge dizzy spells,
which is dangerous in itselfbecause if no one's around, she has that
she could hurt herself, especiallyon the full down, you know, sort of.
That was a real concern.
(12:42):
And then she gets these blinding headachesthat she said
she can't even put into words. It'sjust like lightning in a head, you know?
So that was quite challenging because.
And for my boys as well, because we,like I said she'd be fine for weeks,
she'd go from sitting to standingand nothing would happen for a week.
So you kind of get a bit lax.
Yeah. You know,and then all of a sudden bang.
And when it when it hits,sometimes it's, it's really bad
(13:05):
and she'll be out of action for,you know, for a while, you know.
So they've been some of the challenges
and sorting out time.
I think one of the most important things
you can do as a careris look after yourself as well.
And I found I wasn't at first,
you know, this is the reason they say onairplanes, you know, put your mask on
(13:27):
first before you put on the kidsand, and help anyone else
because you're no good to anyoneunless you're looking after yourself.
Right.
So that was one of the hardest thingsI had to do is I realized I wasn't eating,
I couldn't sleep because I kept thinking,what if I'm asleep?
And she has this issue and
what do I do?
So I wasn't sleeping properly,and nothing breaks humans faster than,
(13:50):
no sleep, you know, or broken sleep.
And was that something you became aware ofjust naturally, or was she.
Did she have to tell you?
And then didyou have any support services?
Actually it was my dad. My dad.
He obviously had more choice words for it,but he said, you don't look good.
Yeah.
You know.
You could say. It.
Are you sleeping?
(14:10):
Have you been looking after yourself?
When's the last timeyou got a solid sleep?
When's the last timeyou had a proper meal?
Because I sort of making meals,but I'll also say, like,
okay, one of your boysneeds to be with her, and.
Yeah, you know, so it was alwaysthis distraction sort of thing.
I was nothing was quiet complete.
Yeah. You know, that makes sense. I
(14:31):
was not finished.
It's. Yeah.
Overwhelming.
Yeah. Yeah. Exactly. So I wasn't sleeping.
I wasn't looking after myself,I wasn't training,
I love my training,and that keeps me sane.
It wasn't doing anything, you know, like,because I had to be there, you know.
So and I think that's one of the trapsthat a lot of carers fall into, especially
someone who's suddenly become a carerbecause something's happened to the baby,
(14:51):
their parent, the sibling, their partner,the child.
Something's happened like an accidentor whatever's happened
and they fall into that trap.
It becomes all consuming. Yeah.
You know, it's allyou can think about all day, every day.
When's the next appointment?
What am I going to do?
How has she been fed, you know, has
it can become all consuming.
(15:12):
And that's not good for anyone.
You're no good to them eitherif you're a stress ball.
So how do youhow do you go about finding time for you
as someone with those significant careresponsibilities,
whether it be your sister,your wife, and then juggling work?
Yeah, it's you just have to do it.
You just you have to make it a priority.
And you're not being selfishby doing that.
(15:34):
That's a that's a big thing as well,
that I had to sort of get my head aroundthat I'm not being selfish, by
going and training,whether it be at the gym for an hour,
in our home garage,we've got a gym set up there
for an hour, going for a run, goingfor a walk as long as someone was there,
I could set that as a priority.
And I found that made a huge differencebecause I was more relaxed.
(15:56):
I was more sanebecause I wasn't a caged dog.
Not being able to release this energy.
And I, I honestly believe thathad a flow on effect for Vicky as well.
And my sisters as well.
Look, they when they see me,you can see that they calm. It's
like my sister Melissa, the one with dancewhen she started having these fits.
(16:17):
She hates hospitals with a passion. Right.
So she freaks out like, nursescan't get close to her
unless they're bringing food.Then she's your best friend.
But she doesn't like it.
She's a stress ball.
And as soon as I turn up,you can see the difference in her.
Yeah, she's just okay.
Everything's fine now. She's cool.
She wouldn't.
She wouldn't get out of a bed one timewhen they needed to do some stuff for her,
(16:40):
I turned up.‘Oh, Paul’ and straight away, you know.
So and I think that's because I was again,I started looking after myself properly.
I’m calm
I've got this in control.
And it's a little win for you that daythat you've got your training in.
You've got your mealin, you've got your sleeping.
It's a win for you.
(17:00):
And I think that helps you stay sane
and it stopsyou being consumed by this role.
Yeah. You know, it's it's a huge role.
That's why it's it is a tough challenge.
I know my mum had cancerfor a number of years, pancreatic cancer.
And there was support servicesthat were existing.
It took took a while for us to understandhow to tap into some of those.
(17:21):
But they were really like,
you know, ranging from having support,cleaning the house, shopping.
Yeah. Giving some respite.
Were you aware of any support servicesthat were there for you?
Did you find some of those helpful?
What were those?
Yeah, with my sisters,we've had, a range of different things.
We've had, I think it was called HomeCare at the time.
I think it may have changed names, butthat was just someone that could come in.
(17:45):
So my parents could go to work
in the morning, and someone would be therefor my sisters to get them on.
The, they had bussescome and pick them up for the sheltered,
either sheltered workshopsor Melissa would go to this special day
unit sort of thing where they
I could do all sorts of art and craftlike excursions or something of that,
but they leave a lot lighterthan when my parents did or when I had to
(18:06):
go, you know, and I wasn't always therebecause of the job I had at the time.
I wasn't always around, and I saw they hadthis this unit called Home Care come in.
And I found that was really goodbecause it was the same person
coming in all the time.
So it wasn't my sisters weren'tthere's a stranger in my house
kind of thing, you know,it was the same person.
They got used to them.
They got used to my sister's little,intricacies as well, which was good.
(18:29):
So that was great.
But then the systems are fine.
They're a lot better than they used to be.
But I had leave, so I was at home.
So they canceled the service right.
You know, and then getting it back again,you had to start the whole process again.
And I, you would have seen it with,with some of the care with your mother,
like some of the processes
are not the easiest things to get startedonce they started.
(18:51):
It's okay. Yeah.
Like I said,the system is better than it used to be.
But there are still
they still have to have like my sistersstill have to have yearly assessments
just to make sure that they still havethe disability, which is insane.
But also what kind of range of care dothey need, especially as they age now.
Melissa's health's changed, so it's, it'sthat's another factor that I have to
(19:15):
sort of get even how much fundingthey'll get for certain things as well.
So that can be a bit stressfulwith Vicky's one, I,
I didn't know if anything or anyonethat can help.
I'm really lucky.
Both my parents, amazing people,they're they.
I pick up the phoneand they are there
I don't care what's happening,they don't care what's happening.
(19:36):
They are there.
So which is kind of like reverse rolewith my sisters.
They’d pick up the phoneand I'd be there. Yeah. Strong network.
Yeah, yeah.
You need that I think you need that.
It's very underrated. Yeah.
How do you think being carerschanged you as a person,
and has that had an impact on your careeror professionally?
Yeah.
So personally I think it's actually beena bit of a blessing because,
(19:59):
growing up with my sisters,you know, and and being the,
their big brother, you know, the carerrole that way and then becoming
an actual carefor them as they've gotten older. It's
I think it's amazing that
these people arethey're really interesting people.
My sisters are really interesting people.
They've got their own little unique thingsabout them.
(20:21):
The friends that I've met,like their friends or special schools
and and now they're with their shelteredworkshops
in their group homes and things like thatthat have gone to for different times
that really interesting people.
And it's given me a lot of exposure
to all sorts of different peopleand all sorts of different disabilities.
So you kind of get used to handlingpeople like that and,
(20:43):
and dealing with people like that,and they just want to be treated
like everybody else.
They don't wantany kind of special treatment.
They don't want a spotlight.
They just want to be likeeverybody else, you know?
So I think that's really good.
It's giving me that exposure
to that kind of life,you know, you know, and it's
and my boys, my boys are my amazing aroundpeople with disabilities.
(21:04):
They can talk to anybody because they’ve grownup with two aunties with disabilities,
and they've met all their friendsand they've gone to their special concerts
that the girls will put onand and things like that.
So they've met their friends and,and things like that.
So that's, that's been really, really coolprofessionally.
I don't think that's had any hindrancein my professional career.
Vicky's one, however,because it was a sudden thing
(21:27):
that may have had an impact on my career
because some places treatedhandle handle things differently.
You know, some placeshandle it well, some places not so much.
And I think that comes the end,
not so much the organization,but the individual leadership.
Well, what are some qualitiesabout someone or some management
(21:48):
that handle things well?What was some advice?
Empathy. Empathy.
So I think that one of the biggest thingsthat any leader can keep in mind
is that this person is going through hellright now.
So treat them like you want to be treated.
And remember, tomorrow it could be you.
You know something could happen. Bang!
(22:08):
And you are now that care.
Be empathetic.
Treat them the way you want to be treated.
And some leaders are naturally really goodat that, you know, and some leaders
maybe not.
And maybe that's an exposure thing.
Maybe they've never been exposed to thatbefore.
Maybe they have, you know.
So I don't know I don't know what it is,but some some leaders offhand
(22:28):
because I've been contracting for a while.
So I've been in different organizationsin some places handle it really well
and other places not so much.
Yeah.
You know so and it's, it'sthe last thing you need is you're dealing
with something horrible that's happenedand you, that's happened to a loved one.
(22:48):
And you're also worried about your job.
Yeah. You know, am I going to have a job?
You know, because I need totake this time off or I need to do this.
So I need to be flexible or whatever.
And you don't need that extraany extra stress.
You don't need that. Right.
So having a leader who is empathetic,
who understands to you that this work'snot going anywhere, right?
(23:11):
Like, if this task doesn't get doneby this date,
the world is not going to implode.
You know,I think that's another thing as well.
So and there's some good leaders out therethankfully.
Yeah. That's good advice.
And what's one sort of related to that.
What's one misconceptionyou think about caring or being a carer?
I think it's people are very quickto assume that that's that's who you are.
(23:34):
That's that's what you are.
And they forget that you are, you know,Janson that they knew before that
or Paul that they knew before thator that you're you're just just like them.
It doesn't define you.
You know, so I think that'sone of the misconceptions about it.
And I think it's
probably the leading misconceptionthat that's not just all you're about.
(23:55):
You know, it's,
so that's something to maybe considerwhen you're dealing with
someone who is a carer. Yeah.
You know,especially someone who's been a been
it's been thrust upon them that they,they weren't a carer before.
And then suddenly they are,you know, they're, they're dealing
with a whole new bag of tricks,you know. So.
And what advice like forsomeone who's starting their,
(24:16):
their journey as a carer like whatyou said it might be thrust upon you.
What advice would youwould you give them given your experience?
Don't beat yourself up.
I think that's a big one.
Don't beat yourself up.
You aren't going to solve every problemthat this person has overnight.
It's a kind of rolethat you need to grow into.
It can be like I said,it can be all consuming.
(24:37):
So that's another bit of adviceI'd say is don't let it.
You know,I've seen what it's done to my parents
when things have gonewrong with my sisters.
Yeah,and it was all my mum could talk about.
My dad couldn't talk about it becauseevery time we did, he'd be in this rage
You know. So it was, it was all consuming.
So don't let that happen to youand look after yourself.
(24:58):
And that's the other thing.
Make sure that you're lookingafter yourself as well.
The person that you're caring forwants you to be happy and healthy.
They don't want you to suddenlystop everything and become a martyr.
You know they want you to be happyand healthy as well.
So yeah, look after yourself as well.
That's good advice.
It's I've had thatpersonal experience myself,
but it's probably in some waysnot dissimilar to parenting, where you're
not given a playbook or there's no manual.
(25:21):
You know,
I remember when I used to say to mewhen we had our kids,
there's two ways to raise kids,and they're both wrong.
And I never got thatuntil we actually had the kids.
And I was like, yeah, I get it.
So it's the same thingabout being a carer.
You're not going to get everything rightfirst time.
Just do your best and remember that,
like I said, remember that personwants you to be happy and healthy as well.
And they're relying on you to be happyand healthy as well because yeah,
(25:45):
your energyis going to pass off on them. Right? So
and what
what's one thing you wish people knewabout being a carer?
Again, it's not who you are.
It's not everything that you, you know,you're still an individual.
You're still a personwith interests as well.
And I wish there was some sort of programor something
that people got more exposure to,
(26:09):
to things like that, you know,whether it be someone with a disability,
someone with that's had like an impairmenthappen or something like that,
because I really think that exposure iswhat helps people understand
what being a carer is about, you know,so there is no program like that.
And maybe for a reason.
There's a lot smarter people than memaking decisions about that.
(26:30):
So I don't know,
maybe there's a reason for it, butI think it would be a really good thing.
Like I said,I seen my boys grow up with that exposure
and they can talk to anybody, and nothingphases them where you see some people
who've never had exposure to anyone,like with a brain injury or with,
a disability or anything like that,that they were born with.
(26:51):
Some people just don't knowhow to take that.
Like, I think one of the best examplesis a movie, Rainman.
All right.So Tom cruise meets his brother.
He didn't know he had a brother.
So that's a big shock in itself.
But then his brother's got autism, right.
So something that he'd never beenexposed to.
And I think that was a really good way of,
of showcasing that, that, you know,he didn't have exposure
(27:11):
and he didn't deal with itvery well, where if he had maybe
had exposure before, he wouldn't have itwould probably been a really boring movie.
But you know what I mean?
It's a good example, I feel.
Yeah, that'ssomething that really stuck with me.
You know, growing upwas that film and the exposure provided.
And I think it's really interestingyou talk about your boys and how that's
(27:32):
given them preparedness for being ableto deal with people of all, all abilities.
Do you, just going backto, to to the workplace, can you think of
any responsibilities that a workplace ormanager might do to help support carers?
And do you think in in your current rolehere at Parliament,
do you think that's working
well for you,and would you have any advice around that.
(27:53):
Yeah,actually this is probably been the best.
The place it's handled things the best.
And again like I said, I thinkit's come down to individual leaders.
The best thing that you could everdo as a leader is check in
and not checking about the work.
Check in with them.
Yeah. You know, because,
(28:14):
you know, like Robin Williamssaid at one time, he said, you know,
every single person you ever meetis battling a demon,
or you are battling some sort of battlethat you don't know anything about.
So be kind always.
And I think that'sone of the biggest things, is
you don't have to call them about work.
You don't have to check in on a taskor something.
Just check in on them,you know, hey, how are you doing?
Because that's another thingabout being a carer.
(28:36):
Everybody'swhat happened with, you know, with Vicky,
everybody wants to know is Vicky okay?
Is Vicky alright? And rightfully so.
The carer has gone through hell. Yeah.
You know, so just check in if you'rea leader, check in with your people.
It doesn't have to.
It doesn't have to be about work.Just checking.
Make sure they're okay,see how they're handling things,
(28:57):
and they may not answer honestly
until they get it that you are actuallyjust checking in on them.
You're not checking inwhether they're getting their stuff done
and all that kind of stuff.
So once they realise that, okay,this person actually cares about me,
then they may open up to you.
So be prepared for that as well, you know?
So it's a really good point.
I know working withyou like knowing how to, you know,
(29:19):
accomplish confident you are youyou you're able to manage and juggle that.
And it was only after we got talkingabout your life circumstances.
I was like, wow, that's a lot.
There's a lot going on in people's lives.
So I think the other thing
I guess is, is there a vulnerabilitythat you need to have as carers
so that you can't assume that someone'snot going through something?
So how do you then broach that topic with,with your colleagues or with workmates?
(29:41):
Is that something that you feelis important?
Yeah, I think some people are
probably better at it than othersbecause they're just maybe more open.
Anyway, to be honest,I sucked at it to start with.
I was fine, everything was fine.
I've got this.
You know, I've I've been throughall sorts of stuff in my past.
Yeah, I've got this.
I'm fine.
(30:02):
And again,it was my dad that now, you know,
it's okay to say you're not, you know. So,
I don't know, I, I think,
I think some people feel likeit's a, a weakness.
And again, things weren't handled thatwell in the past with,
workplaces, people needing time offand think that wasn't handled very well.
(30:26):
So that's there's a legacy to that. Right?
So people don't really want to say,hey, I'm struggling.
Yeah.
You know,because there's some sort of fear.
Maybe it's in the back of their mindthat I could lose my job here
or, you know, and that's the last thingthe person needs, you know?
So I think being able to
I think it's a really positive thingto actually just open up
(30:48):
and tell your colleagues what's going onbecause they're not mind readers.
Right. So they don't knowthat you're under stress.
You're upset.
Perhaps something's happened.
It's really triggered you that they
they don't know thatunless you actually speak up.
People aren't joyous, you know?
So yeah, you know,they can't read your mind.
So you need to speak up and especiallyto your leaders, your colleagues.
(31:11):
Yeah, that that's good because it's goodfor them to know what's going on as well.
You don't need to broadcastthe daily report or anything, you know.
But yeah, just so they canand I what's going on and why
you're not there
or why you're at home or working from homeor whatever is happening.
But your leadersyou really need to be honest with them
about how things are going.
(31:31):
I found it here withthe leaders I've had here.
They've been fantastic.
Like I said, they're the ones doing thethe check ins with me.
It's the first thing they ask, you know,sort of thing without getting phone calls
or getting teams message or anything,or is an SMS or something,
you know, just checking inand I think that's really good.
But if I hadn't said anything,
(31:53):
then how would they know? That's right.
Yeah. And I have that.
And I was pulledsuddenly working from home four days
a week, you know, five daysa what's going on with him?
And it's not that I'm, I'm wagging school.
You know, something serious is happening,you know.
So yeah.
So it's been I think that's it's importantyou have to talk to people.
You have to open up.
(32:13):
And probably just to, to finish up.
So you know Carmel, Melissa,Vicky obviously very lucky
to have you in their lives as a carer.
And obviously your, your boys.
Is there anything that you want to finishon or say further
to kind of talkabout the role of, of a carer and careers.
(32:34):
I think, yeah, be ready.
It can happen to anybody at any time.
Be ready that when it does happen,
everything will gopear shaped like nothing goes to plan.
Everything will go pear shaped,but it will get better.
And I think the other thingthat's really, really important,
like we were just talkingabout, is communicate.
You have to tell the peoplethat you work with what's going on.
(32:58):
You have to do that. It will save you.
It could save your career, right?
You know, if that's important to you.
I think it's really importantthat communication
is important in any relationship.
And workplace is no different. Right.
So being open, being honest,you can be vulnerable.
You know, peopleI think have a misconception again.
(33:19):
Again, because things weren't handledso well in the past that leaders of a
had nots, it's all about numberssort of people.
Often they're not the people too, right.
So they'll get it.
They'll get that this is important.
This has happened.
Talk to them.Lean on them when you need to.
And yeah, just just be open and honestwith people, you know.
(33:41):
So it's it's a tough role.
It can be a toughrole, can be a challenging role.
But it's super rewarding too.
It's something if it's somethingthat's suddenly thrust on you,
it is a rewarding thingknowing that you're helping that person.
You're bringing that person,whether it's something like Vicky,
where it's not going to last foreveror she's going to get better
and you're helping them through that.
If it's somethingthat's going to be permanent,
(34:02):
you're helping them through thatbecause they deserve it, right?
So there's still people,
something more that happens to them,but they're still people,
you know, and they're the personthat you remembered, you know.
So just be ready.
As ready as you
Can be and yourself.
Yeah, yeah.
Look after yourself and communicate. Yeah.
That's right. Thanks, Paul.
No worries.
Thanks for having me.
The Parliament of New South
Wales stands on the traditional landsof the Gadigal people.
We pay our respects to their Elders, pastand present.
We proudly acknowledge all the Aboriginalpeoples of New South Wales
and honour their enduring connectionto the lands, waters and sky of the state.
The representatives of the people of NewSouth Wales gather from various
(00:21):
Aboriginal lands across the stateto meet in this Parliament.
May the decisions made within these wallsreflect our commitment
to fostering a spirit of reconciliationand respect.
Let's get started.
(00:44):
Done.
Today's RUOK Day
Oh, good timing too. Yeah. It is.
Are you okay?
I am okay.
Thank you very much for asking.
It's been a good day.
So good.
And did you want to give a shortintroduction to yourself?
Yeah.
My name is Paul Robinson.
I'm a communications adviser.
Recently moved from the maincommunications team into Capital Works
(01:06):
and loving it.
And at New South Wales Parliament.
At New South Wales Parliament.
Yeah.
So today's recording is focusing on carersin particular.
We're looking at carers and careersas a, as a unique area of this practice.
So are you able to share a little bitabout your carer duties
and the needs of Vicor others in your life?
Yeah, yeah for sure.
(01:26):
So it's interesting.
I've got two separate experiences, very,very different experiences with caring,
a lifelong caring positionfor both of my sisters.
And then, recent an event.
Sort of thing that created an extra carerposition.
So the lifelong position ones,I've got two sisters.
(01:47):
I'm the oldest of four.
We've got two sisters in the middle,and, both have disabilities.
The one just below me. Carmel.
She has a really rare, disabilitycalled Williams syndrome.
There's not that much known about it,and there's not that many people
even in Australia with it.
So she has a has some unique abilities,in her disability.
(02:07):
Like she.
If she met you today, she'd rememberexactly what you were wearing.
Should remember every word you said,and she'd ask you questions about,
What do you know? Are you still this?Are you still that? You know?
Do you still listen to Hubermanand things like that?
Like we're talking about off air,offline before, she also has
her disability, has some limiting issues,
I guess you could call it, where she can'ttotally function in society.
(02:30):
She works at a special sheltered workshopwhere she packs boxes
and does all sorts of things like that.
So she's independent in a way like that,and she's quite excited
because she caught the Metro on herown the other day, and
she'll go into a shop, buya can of Coke and hand over $100
and not knowif that's enough or not enough.
She can't cook without supervision,
So she needs a lot of.
Yeah she needs a lot of support.
(02:52):
And then Melissa, the one below her,she's a bit younger than her.
She's, has down syndrome and she's
quite low functioning as well in the scalebecause down syndrome.
But you know, people,there's quite a big scale, a big range
of how capable they areat a functioning society.
Melissa,
her speechis probably the biggest limiting factor.
(03:15):
I can understand it, like she'sspeaking fluent English to me,
but other people I know really strugglebecause she does it.
Words are, quite mixed up.
Because you've been with her a whole lot
Yeah, exactly.
So I know what she's saying, and,
I can usually tell by the cheeky grinon her face, too, whether she's
okay if she's taking the Mickeyout of someone or not, and she.
Because she's a real character, she'san an absolute character, a real rat bag.
(03:38):
Everybody. You can't help but love her.
Yeah, because she's thischeeky little sort of thing.
Unfortunately, though, for Melissa,her health
has deteriorated quite rapidly.
In the last few years.
She started suffering from lateonset epilepsy,
and each with each seizure,she seems to have slowed down again.
And the medication that helps that isalso has some side effects as well.
(04:02):
So that is the those twothe lifelong chronic care inquisitions.
And then like I said,there's had been a recent event
that turned me into a different typeof carer, and that was with my wife.
She was diagnosed with a massive braintumor relatively recently.
Yeah, relatively recently.And they operated on it immediately.
It was so severe.
She was sort of under the knife.
(04:22):
Within a few days of the diagnosis.
They managed to get most of it,but they can't get all of it
because it's sitting on the carotid arteryin the brain.
So it's too risky for themto cut anywhere near that.
So that's caused a few issues.
Obviously, at the time around the surgery,that was character building experience,
(04:42):
especially from someonethat was so independent and so capable.
And she's fierce, you know, she'sfive foot nothing, but she's fierce
That's, to go fromthat to someone who needed someone around
her 24/7 was a big change for us,you know?
So and so you've you've grown uphaving a carer role
with your sisters, and now you've suddenlyfound yourself on a trajectory
(05:03):
where your caring responsibilitiesbecome all that more profound.
How's that relationship with your wifeand the role of a carer in that capacity?
And you talked about the fierceindependent.
How has that dynamic changed?
It's that's a really good question
because I kind of have to walk a fine linewith it.
It's fine to be the,you know, the protective husband
(05:25):
and you sort of you like that anyway,you know, I'm protective of her anyway.
I not that I need to be,but now I have to walk a really fine line.
Like, am I being her carer now and saying,no, stop that rest.
Do this.You need to go to this appointment.
All that kind of stuff.Where am I being a nagging husband?
You know, like which one?
I'm more doing? Am I crossing a line here?
(05:46):
Especially like we said,she is independent.
She is very fierce,super intelligent person.
Having someone
what's the right word for her?
Like babysit her is you can be,
tricky situation, you know that.
I don't want to cross that line.
I don't want her to feel like that,but I know I have,
because I've got the the look, you know,the look that's like, hey, watch it.
(06:07):
You know, I think soit can be an interesting experience,
but it sort of overtime, it's gotten easier.
Like a certain I can pick up now when
I'm starting to head towards being an nag.
She can do this. She's capable.
You've got responsibilities of careand that.
Yeah. Managing that work. So so on that.
What does it mean for you to be a carerand to give care?
(06:30):
It's about them really.
It's about I wanted Vicky to be ableto go back into her life
as quickly as she couldand as stable as she could.
So it's about thinkingabout what's important for them.
And like I get a kick out of it.
Seeing her improve and seeing her,it has given her
a new lease on life too,you know, so she wants to do more things.
(06:53):
Unfortunately, after the operation,there's been a few incidents
where she's going downhill rapidly again,because it was such a massive tumor
and she had it for so long.
There's a big void where the tumor was,you know, so her brain is reforming.
So this will go with time.
It's not a permanent thing for her.
I just want her to have her life back.
(07:15):
You know?
So say in that role in that,in the carer role
for Vicky, it's it's like I knowthere's an end to it, you know.
So it's more about me building,
some sortof gradient tapering away from that carer
role, letting her bethe more independent person.
Let her be Vicky again.
Yeah.
Because you know where this my sisters,that's that's not going anywhere
(07:38):
despite some of the formsI've had to fill in for NDIS
where it's like,you know, filling in this form:
Does your sister still suffer from downsyndrome?
WelI think we can safely say you cantick that box for the rest of her life.
And I saythat's a permanent sort of thing.
So that's not going anywhere.
I have to play that role forever.
Yeah. You know.
And there's probably an awarenessthat you've gained over time.
(08:00):
But in this particular instance withVicky, was there any preparation for that?
Like once
you found out that verdict, like were youthen given any support or advice.
So you had to just sort of.
Now had to wing it?I guess it's fortunate.
I don't know anybody else had sort of
had anything like thatand had to do with anything like that.
But I had to wing itand it was really hard
(08:21):
because I was even like the dayof the operation.
I was terrified, absolutely terrified.
I'm actually getting emotionalthinking about it.
It was really hard because I didn't knowhow she was going to come out of it.
You know? I didn't know if sheif she was going to come out of it.
So sorry. I'm getting emotional.
That's okay.
It was really difficult.
I didn't know what was going to happen.
I didn't know whether she'd come backbecause they'd warned me.
(08:43):
They the staff were fantastic.
They had warned methat this is really dangerous.
Yeah, there's some severe risksif we hit the wrong area or whatever.
So I just wasn't sureif she was going to come out, Vicky,
or she's going to come outa different version of the person.
You know, I knew
She must have been terrified.
Yeah, but she's like I said, she's ashe's a little warrior
(09:06):
I, you know, she was more worried aboutyou know, make sure you get your rest.
You make sure you do.
And but she was terrified as well.
She told me since.That was her way of dealing.
Yeah, yeah, yeah, yeah.Her way of dealing with it was
Making sure I was OK. Yeah.You know what? She's done forever.
And I say, look, I've told you offline
she cared for mewhen I had my PTSD issues.
(09:27):
She was a rock, you know?
And that's just who she is.
Now that role’s reversed,you know, the tables have turned.
Yeah, yeah,but you're back to your question, no
I didn't really have any idea what to do.
I didn't know what was going to happen.
I didn't know howshe was going to turn out.
I didn't know how much care she’d need.
Yeah.
Didn't knowhow long she'd be in the hospital for
because they didn't know either.
(09:47):
They were really unsure of like that.
They didn't really want to give me an answerin case it was wrong, I guess.
So how were your kids with it?
Oh they would.
They were a mess, I guess.
Yeah. Yeah, I've got two boys. Right.
So they're 22 and 20 now.
So at the timethey would have been 20 and 18.
But yeah they put on a really goodbrave front.
(10:07):
It was like they
I don't know if they got into a
little huddleand work it out between themselves,
but they, they, they held it togetherall the way to the night before the,
the surgery. Yeah.And then they just broke.
Yeah. And I on the day more phone was just,
they just spam me for a whilein the morning.
And then I said, look,as soon as I know I kept saying same.
So know I know anything.
(10:28):
I'll let you know.I'll let you know. Yeah.
But she was under the knifefor almost ten hours, so.
Yeah.
So they left me alone for a little bitand then the messages started again.
So they were they were really worriedand they just couldn't wait to get in.
and see her
Yeah the big tough boys and stuff.
But they, they love their mama.
And so, so she's come outand then what have you found
some of the challenges of being a carer.
(10:51):
In the first instance.
And then as it times gone by.
In the first instance,it was making sure she was comfortable
and making sure that I knewas much as I could to know
what to look out for, to know how to dealwith different situations.
If they came up what medicationsshe would need,
(11:12):
what kind of appointmentsshe'd be having. So.
So it was all, look, a bit of a logisticssort of thing that I was getting used to.
But there were some challenges
straight off the bat that she seemed good.
Like even straight off the operation,it was like
she woke up in a groggy,you know, obviously off her face on
(11:34):
anaesthetic
But she seemed quite good.
And it sort of surprised methat that someone who's been under the knife
like that after such a serious thingcould be quite well functioning.
They did keep her in a special
there's a it's almost like an ICU unitfor neurology patients.
And they kept her in thereand she was under observation.
Each bed has a nurse watching everything.
(11:57):
So it was really good.
I felt safe that she was there.
But then bringing it home, that was atotally different sort of thing.
I was like,oh my God, I have to be there 24/7
I have to watch everything that she does.
And it's almost like having a newbornin the house, you know?
Yeah, sort of checking everything.
And so that was a bit challenging.
But then I think the
biggest challenge with Vicky is one isshe'll be fine for weeks.
(12:20):
Yeah.
You know, and then all of a suddensomething will happen.
She'll go her issue with this brain,she's always been
going from sitting to standing.
She has a huge dizzy spells,
which is dangerous in itselfbecause if no one's around, she has that
she could hurt herself, especiallyon the full down, you know, sort of.
That was a real concern.
(12:42):
And then she gets these blinding headachesthat she said
she can't even put into words. It'sjust like lightning in a head, you know?
So that was quite challenging because.
And for my boys as well, because we,like I said she'd be fine for weeks,
she'd go from sitting to standingand nothing would happen for a week.
So you kind of get a bit lax.
Yeah. You know,and then all of a sudden bang.
And when it when it hits,sometimes it's, it's really bad
(13:05):
and she'll be out of action for,you know, for a while, you know.
So they've been some of the challenges
and sorting out time.
I think one of the most important things
you can do as a careris look after yourself as well.
And I found I wasn't at first,
you know, this is the reason they say onairplanes, you know, put your mask on
(13:27):
first before you put on the kidsand, and help anyone else
because you're no good to anyoneunless you're looking after yourself.
Right.
So that was one of the hardest thingsI had to do is I realized I wasn't eating,
I couldn't sleep because I kept thinking,what if I'm asleep?
And she has this issue and
what do I do?
So I wasn't sleeping properly,and nothing breaks humans faster than,
(13:50):
no sleep, you know, or broken sleep.
And was that something you became aware ofjust naturally, or was she.
Did she have to tell you?
And then didyou have any support services?
Actually it was my dad. My dad.
He obviously had more choice words for it,but he said, you don't look good.
Yeah.
You know.
You could say. It.
Are you sleeping?
(14:10):
Have you been looking after yourself?
When's the last timeyou got a solid sleep?
When's the last timeyou had a proper meal?
Because I sort of making meals,but I'll also say, like,
okay, one of your boysneeds to be with her, and.
Yeah, you know, so it was alwaysthis distraction sort of thing.
I was nothing was quiet complete.
Yeah. You know, that makes sense. I
(14:31):
was not finished.
It's. Yeah.
Overwhelming.
Yeah. Yeah. Exactly. So I wasn't sleeping.
I wasn't looking after myself,I wasn't training,
I love my training,and that keeps me sane.
It wasn't doing anything, you know, like,because I had to be there, you know.
So and I think that's one of the trapsthat a lot of carers fall into, especially
someone who's suddenly become a carerbecause something's happened to the baby,
(14:51):
their parent, the sibling, their partner,the child.
Something's happened like an accidentor whatever's happened
and they fall into that trap.
It becomes all consuming. Yeah.
You know, it's allyou can think about all day, every day.
When's the next appointment?
What am I going to do?
How has she been fed, you know, has
it can become all consuming.
(15:12):
And that's not good for anyone.
You're no good to them eitherif you're a stress ball.
So how do youhow do you go about finding time for you
as someone with those significant careresponsibilities,
whether it be your sister,your wife, and then juggling work?
Yeah, it's you just have to do it.
You just you have to make it a priority.
And you're not being selfishby doing that.
(15:34):
That's a that's a big thing as well,
that I had to sort of get my head aroundthat I'm not being selfish, by
going and training,whether it be at the gym for an hour,
in our home garage,we've got a gym set up there
for an hour, going for a run, goingfor a walk as long as someone was there,
I could set that as a priority.
And I found that made a huge differencebecause I was more relaxed.
(15:56):
I was more sanebecause I wasn't a caged dog.
Not being able to release this energy.
And I, I honestly believe thathad a flow on effect for Vicky as well.
And my sisters as well.
Look, they when they see me,you can see that they calm. It's
like my sister Melissa, the one with dancewhen she started having these fits.
(16:17):
She hates hospitals with a passion. Right.
So she freaks out like, nursescan't get close to her
unless they're bringing food.Then she's your best friend.
But she doesn't like it.
She's a stress ball.
And as soon as I turn up,you can see the difference in her.
Yeah, she's just okay.
Everything's fine now. She's cool.
She wouldn't.
She wouldn't get out of a bed one timewhen they needed to do some stuff for her,
(16:40):
I turned up.‘Oh, Paul’ and straight away, you know.
So and I think that's because I was again,I started looking after myself properly.
I’m calm
I've got this in control.
And it's a little win for you that daythat you've got your training in.
You've got your mealin, you've got your sleeping.
It's a win for you.
(17:00):
And I think that helps you stay sane
and it stopsyou being consumed by this role.
Yeah. You know, it's it's a huge role.
That's why it's it is a tough challenge.
I know my mum had cancerfor a number of years, pancreatic cancer.
And there was support servicesthat were existing.
It took took a while for us to understandhow to tap into some of those.
(17:21):
But they were really like,
you know, ranging from having support,cleaning the house, shopping.
Yeah. Giving some respite.
Were you aware of any support servicesthat were there for you?
Did you find some of those helpful?
What were those?
Yeah, with my sisters,we've had, a range of different things.
We've had, I think it was called HomeCare at the time.
I think it may have changed names, butthat was just someone that could come in.
(17:45):
So my parents could go to work
in the morning, and someone would be therefor my sisters to get them on.
The, they had bussescome and pick them up for the sheltered,
either sheltered workshopsor Melissa would go to this special day
unit sort of thing where they
I could do all sorts of art and craftlike excursions or something of that,
but they leave a lot lighterthan when my parents did or when I had to
(18:06):
go, you know, and I wasn't always therebecause of the job I had at the time.
I wasn't always around, and I saw they hadthis this unit called Home Care come in.
And I found that was really goodbecause it was the same person
coming in all the time.
So it wasn't my sisters weren'tthere's a stranger in my house
kind of thing, you know,it was the same person.
They got used to them.
They got used to my sister's little,intricacies as well, which was good.
(18:29):
So that was great.
But then the systems are fine.
They're a lot better than they used to be.
But I had leave, so I was at home.
So they canceled the service right.
You know, and then getting it back again,you had to start the whole process again.
And I, you would have seen it with,with some of the care with your mother,
like some of the processes
are not the easiest things to get startedonce they started.
(18:51):
It's okay. Yeah.
Like I said,the system is better than it used to be.
But there are still
they still have to have like my sistersstill have to have yearly assessments
just to make sure that they still havethe disability, which is insane.
But also what kind of range of care dothey need, especially as they age now.
Melissa's health's changed, so it's, it'sthat's another factor that I have to
(19:15):
sort of get even how much fundingthey'll get for certain things as well.
So that can be a bit stressfulwith Vicky's one, I,
I didn't know if anything or anyonethat can help.
I'm really lucky.
Both my parents, amazing people,they're they.
I pick up the phoneand they are there
I don't care what's happening,they don't care what's happening.
(19:36):
They are there.
So which is kind of like reverse rolewith my sisters.
They’d pick up the phoneand I'd be there. Yeah. Strong network.
Yeah, yeah.
You need that I think you need that.
It's very underrated. Yeah.
How do you think being carerschanged you as a person,
and has that had an impact on your careeror professionally?
Yeah.
So personally I think it's actually beena bit of a blessing because,
(19:59):
growing up with my sisters,you know, and and being the,
their big brother, you know, the carerrole that way and then becoming
an actual carefor them as they've gotten older. It's
I think it's amazing that
these people arethey're really interesting people.
My sisters are really interesting people.
They've got their own little unique thingsabout them.
(20:21):
The friends that I've met,like their friends or special schools
and and now they're with their shelteredworkshops
in their group homes and things like thatthat have gone to for different times
that really interesting people.
And it's given me a lot of exposure
to all sorts of different peopleand all sorts of different disabilities.
So you kind of get used to handlingpeople like that and,
(20:43):
and dealing with people like that,and they just want to be treated
like everybody else.
They don't wantany kind of special treatment.
They don't want a spotlight.
They just want to be likeeverybody else, you know?
So I think that's really good.
It's giving me that exposure
to that kind of life,you know, you know, and it's
and my boys, my boys are my amazing aroundpeople with disabilities.
(21:04):
They can talk to anybody because they’ve grownup with two aunties with disabilities,
and they've met all their friendsand they've gone to their special concerts
that the girls will put onand and things like that.
So they've met their friends and,and things like that.
So that's, that's been really, really coolprofessionally.
I don't think that's had any hindrancein my professional career.
Vicky's one, however,because it was a sudden thing
(21:27):
that may have had an impact on my career
because some places treatedhandle handle things differently.
You know, some placeshandle it well, some places not so much.
And I think that comes the end,
not so much the organization,but the individual leadership.
Well, what are some qualitiesabout someone or some management
(21:48):
that handle things well?What was some advice?
Empathy. Empathy.
So I think that one of the biggest thingsthat any leader can keep in mind
is that this person is going through hellright now.
So treat them like you want to be treated.
And remember, tomorrow it could be you.
You know something could happen. Bang!
(22:08):
And you are now that care.
Be empathetic.
Treat them the way you want to be treated.
And some leaders are naturally really goodat that, you know, and some leaders
maybe not.
And maybe that's an exposure thing.
Maybe they've never been exposed to thatbefore.
Maybe they have, you know.
So I don't know I don't know what it is,but some some leaders offhand
(22:28):
because I've been contracting for a while.
So I've been in different organizationsin some places handle it really well
and other places not so much.
Yeah.
You know so and it's, it'sthe last thing you need is you're dealing
with something horrible that's happenedand you, that's happened to a loved one.
(22:48):
And you're also worried about your job.
Yeah. You know, am I going to have a job?
You know, because I need totake this time off or I need to do this.
So I need to be flexible or whatever.
And you don't need that extraany extra stress.
You don't need that. Right.
So having a leader who is empathetic,
who understands to you that this work'snot going anywhere, right?
(23:11):
Like, if this task doesn't get doneby this date,
the world is not going to implode.
You know,I think that's another thing as well.
So and there's some good leaders out therethankfully.
Yeah. That's good advice.
And what's one sort of related to that.
What's one misconceptionyou think about caring or being a carer?
I think it's people are very quickto assume that that's that's who you are.
(23:34):
That's that's what you are.
And they forget that you are, you know,Janson that they knew before that
or Paul that they knew before thator that you're you're just just like them.
It doesn't define you.
You know, so I think that'sone of the misconceptions about it.
And I think it's
probably the leading misconceptionthat that's not just all you're about.
(23:55):
You know, it's,
so that's something to maybe considerwhen you're dealing with
someone who is a carer. Yeah.
You know,especially someone who's been a been
it's been thrust upon them that they,they weren't a carer before.
And then suddenly they are,you know, they're, they're dealing
with a whole new bag of tricks,you know. So.
And what advice like forsomeone who's starting their,
(24:16):
their journey as a carer like whatyou said it might be thrust upon you.
What advice would youwould you give them given your experience?
Don't beat yourself up.
I think that's a big one.
Don't beat yourself up.
You aren't going to solve every problemthat this person has overnight.
It's a kind of rolethat you need to grow into.
It can be like I said,it can be all consuming.
(24:37):
So that's another bit of adviceI'd say is don't let it.
You know,I've seen what it's done to my parents
when things have gonewrong with my sisters.
Yeah,and it was all my mum could talk about.
My dad couldn't talk about it becauseevery time we did, he'd be in this rage
You know. So it was, it was all consuming.
So don't let that happen to youand look after yourself.
(24:58):
And that's the other thing.
Make sure that you're lookingafter yourself as well.
The person that you're caring forwants you to be happy and healthy.
They don't want you to suddenlystop everything and become a martyr.
You know they want you to be happyand healthy as well.
So yeah, look after yourself as well.
That's good advice.
It's I've had thatpersonal experience myself,
but it's probably in some waysnot dissimilar to parenting, where you're
not given a playbook or there's no manual.
(25:21):
You know,
I remember when I used to say to mewhen we had our kids,
there's two ways to raise kids,and they're both wrong.
And I never got thatuntil we actually had the kids.
And I was like, yeah, I get it.
So it's the same thingabout being a carer.
You're not going to get everything rightfirst time.
Just do your best and remember that,
like I said, remember that personwants you to be happy and healthy as well.
And they're relying on you to be happyand healthy as well because yeah,
(25:45):
your energyis going to pass off on them. Right? So
and what
what's one thing you wish people knewabout being a carer?
Again, it's not who you are.
It's not everything that you, you know,you're still an individual.
You're still a personwith interests as well.
And I wish there was some sort of programor something
that people got more exposure to,
(26:09):
to things like that, you know,whether it be someone with a disability,
someone with that's had like an impairmenthappen or something like that,
because I really think that exposure iswhat helps people understand
what being a carer is about, you know,so there is no program like that.
And maybe for a reason.
There's a lot smarter people than memaking decisions about that.
(26:30):
So I don't know,
maybe there's a reason for it, butI think it would be a really good thing.
Like I said,I seen my boys grow up with that exposure
and they can talk to anybody, and nothingphases them where you see some people
who've never had exposure to anyone,like with a brain injury or with,
a disability or anything like that,that they were born with.
(26:51):
Some people just don't knowhow to take that.
Like, I think one of the best examplesis a movie, Rainman.
All right.So Tom cruise meets his brother.
He didn't know he had a brother.
So that's a big shock in itself.
But then his brother's got autism, right.
So something that he'd never beenexposed to.
And I think that was a really good way of,
of showcasing that, that, you know,he didn't have exposure
(27:11):
and he didn't deal with itvery well, where if he had maybe
had exposure before, he wouldn't have itwould probably been a really boring movie.
But you know what I mean?
It's a good example, I feel.
Yeah, that'ssomething that really stuck with me.
You know, growing upwas that film and the exposure provided.
And I think it's really interestingyou talk about your boys and how that's
(27:32):
given them preparedness for being ableto deal with people of all, all abilities.
Do you, just going backto, to to the workplace, can you think of
any responsibilities that a workplace ormanager might do to help support carers?
And do you think in in your current rolehere at Parliament,
do you think that's working
well for you,and would you have any advice around that.
(27:53):
Yeah,actually this is probably been the best.
The place it's handled things the best.
And again like I said, I thinkit's come down to individual leaders.
The best thing that you could everdo as a leader is check in
and not checking about the work.
Check in with them.
Yeah. You know, because,
(28:14):
you know, like Robin Williamssaid at one time, he said, you know,
every single person you ever meetis battling a demon,
or you are battling some sort of battlethat you don't know anything about.
So be kind always.
And I think that'sone of the biggest things, is
you don't have to call them about work.
You don't have to check in on a taskor something.
Just check in on them,you know, hey, how are you doing?
Because that's another thingabout being a carer.
(28:36):
Everybody'swhat happened with, you know, with Vicky,
everybody wants to know is Vicky okay?
Is Vicky alright? And rightfully so.
The carer has gone through hell. Yeah.
You know, so just check in if you'rea leader, check in with your people.
It doesn't have to.
It doesn't have to be about work.Just checking.
Make sure they're okay,see how they're handling things,
(28:57):
and they may not answer honestly
until they get it that you are actuallyjust checking in on them.
You're not checking inwhether they're getting their stuff done
and all that kind of stuff.
So once they realise that, okay,this person actually cares about me,
then they may open up to you.
So be prepared for that as well, you know?
So it's a really good point.
I know working withyou like knowing how to, you know,
(29:19):
accomplish confident you are youyou you're able to manage and juggle that.
And it was only after we got talkingabout your life circumstances.
I was like, wow, that's a lot.
There's a lot going on in people's lives.
So I think the other thing
I guess is, is there a vulnerabilitythat you need to have as carers
so that you can't assume that someone'snot going through something?
So how do you then broach that topic with,with your colleagues or with workmates?
(29:41):
Is that something that you feelis important?
Yeah, I think some people are
probably better at it than othersbecause they're just maybe more open.
Anyway, to be honest,I sucked at it to start with.
I was fine, everything was fine.
I've got this.
You know, I've I've been throughall sorts of stuff in my past.
Yeah, I've got this.
I'm fine.
(30:02):
And again,it was my dad that now, you know,
it's okay to say you're not, you know. So,
I don't know, I, I think,
I think some people feel likeit's a, a weakness.
And again, things weren't handled thatwell in the past with,
workplaces, people needing time offand think that wasn't handled very well.
(30:26):
So that's there's a legacy to that. Right?
So people don't really want to say,hey, I'm struggling.
Yeah.
You know,because there's some sort of fear.
Maybe it's in the back of their mindthat I could lose my job here
or, you know, and that's the last thingthe person needs, you know?
So I think being able to
I think it's a really positive thingto actually just open up
(30:48):
and tell your colleagues what's going onbecause they're not mind readers.
Right. So they don't knowthat you're under stress.
You're upset.
Perhaps something's happened.
It's really triggered you that they
they don't know thatunless you actually speak up.
People aren't joyous, you know?
So yeah, you know,they can't read your mind.
So you need to speak up and especiallyto your leaders, your colleagues.
(31:11):
Yeah, that that's good because it's goodfor them to know what's going on as well.
You don't need to broadcastthe daily report or anything, you know.
But yeah, just so they canand I what's going on and why
you're not there
or why you're at home or working from homeor whatever is happening.
But your leadersyou really need to be honest with them
about how things are going.
(31:31):
I found it here withthe leaders I've had here.
They've been fantastic.
Like I said, they're the ones doing thethe check ins with me.
It's the first thing they ask, you know,sort of thing without getting phone calls
or getting teams message or anything,or is an SMS or something,
you know, just checking inand I think that's really good.
But if I hadn't said anything,
(31:53):
then how would they know? That's right.
Yeah. And I have that.
And I was pulledsuddenly working from home four days
a week, you know, five daysa what's going on with him?
And it's not that I'm, I'm wagging school.
You know, something serious is happening,you know.
So yeah.
So it's been I think that's it's importantyou have to talk to people.
You have to open up.
(32:13):
And probably just to, to finish up.
So you know Carmel, Melissa,Vicky obviously very lucky
to have you in their lives as a carer.
And obviously your, your boys.
Is there anything that you want to finishon or say further
to kind of talkabout the role of, of a carer and careers.
(32:34):
I think, yeah, be ready.
It can happen to anybody at any time.
Be ready that when it does happen,
everything will gopear shaped like nothing goes to plan.
Everything will go pear shaped,but it will get better.
And I think the other thingthat's really, really important,
like we were just talkingabout, is communicate.
You have to tell the peoplethat you work with what's going on.
(32:58):
You have to do that. It will save you.
It could save your career, right?
You know, if that's important to you.
I think it's really importantthat communication
is important in any relationship.
And workplace is no different. Right.
So being open, being honest,you can be vulnerable.
You know, peopleI think have a misconception again.
(33:19):
Again, because things weren't handledso well in the past that leaders of a
had nots, it's all about numberssort of people.
Often they're not the people too, right.
So they'll get it.
They'll get that this is important.
This has happened.
Talk to them.Lean on them when you need to.
And yeah, just just be open and honestwith people, you know.
(33:41):
So it's it's a tough role.
It can be a toughrole, can be a challenging role.
But it's super rewarding too.
It's something if it's somethingthat's suddenly thrust on you,
it is a rewarding thingknowing that you're helping that person.
You're bringing that person,whether it's something like Vicky,
where it's not going to last foreveror she's going to get better
and you're helping them through that.
If it's somethingthat's going to be permanent,
(34:02):
you're helping them through thatbecause they deserve it, right?
So there's still people,
something more that happens to them,but they're still people,
you know, and they're the personthat you remembered, you know.
So just be ready.
As ready as you
Can be and yourself.
Yeah, yeah.
Look after yourself and communicate. Yeah.
That's right. Thanks, Paul.
No worries.
Thanks for having me.
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