June 2, 2025 • 36 mins
Nick’s in a pretty unique position as a carer.
“I can’t fix the problem with my mum but as an engineer, I can problem-solve. I can advocate for her and give her a voice when she can’t navigate the system,” Nick said.
As an engineer, Nick’s used to untangling complex systems. He’s about as tech-savvy as they come but even he found it frustrating trying to access support for his mum, who’s living with Alzheimer’s disease.
Dementia Australia Executive Director Services, Advocacy and Research Dr Kaele Stokes sees the system from another angle, and offers tips for new carers who don’t know where to start.
If you’d like to access counselling services, you can visit the counselling section on Dementia Australia’s website or the CarerGateway.
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Hold the Moment is a podcast from Dementia Australia, produced by Deadset Studios and hosted by Jim Rogers and Hamish Macdonald.
For support, you can contact the National Dementia Helpline on 1800 100 500 (24 hours a day, seven days a week). The National Dementia Helpline is funded by the Australian Government.
Follow Dementia Australia on Facebook and Instagram or find support resources on our website.
Production by Liam Riordan and sound design by Ryan Pemberton. The executive producers are Gia Moylan and Kellie Riordan. Production manager is Ann Chesterman.
Dementia Australia and Deadset Studios acknowledge the Traditional Owners of Country throughout Australia and recognise their continuing connection to lands, waters and communities. We pay our respect to their Elders past and present, and extend that respect to all Aboriginal and Torres Strait Islander peoples today.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:00):
- Hello, my name is Kevin.
I am a First Nations advocatewith Dementia Australia.
For more than 50,000 years,we have come together
to trade knowledge, to learn and to teach.
Today, we joined tokeep up that tradition.
So with that in mind,we now pay our respects
to the traditional owners, to Elders past
and present, to those First Nations people
(00:22):
joining us here today.
(Dial Tone)
(Phone Ringing)
(Music Playing)
- Your call is important to us.
You are now 22nd in the queue.
(00:45):
(Music Playing)
- Now, I'm sure you'refamiliar with that sound.
Whenever you've had tobook an appointment, talk
to a government agency,
or even just changeyour mobile phone plan.
You've probably spentenough time on hold to know
that you never want to hear it again.
- But if you're caring forsomeone living with dementia,
(01:05):
unfortunately you just can'tescape calls like this.
In fact, it could becomethe background noise
of your entire caring journey.
- Hey there, I'm Hamish Macdonald.
I'm a journalist and Irecently helped manage the care
for my Dad who was diagnosed
with Lewy body dementia and Parkinson's.
- And I'm Jim Rogers.
I'm living with Younger Onset Alzheimer's.
(01:27):
This is Hold the Moment, apodcast from Dementia Australia.
And this episode helps you tonavigate the healthcare system
and access support as a Carer.
(Music Playing)
- So Jim, is it you waitingon hold, on the phone,
or is it your husbandTy, or is it the kids?
- It's definitely not me, it'll be Ty.
(01:48):
He does all the nittygritty of that sort of stuff
and it drives him mad.
- Do you know how much of it there is?
- I know that he spendsa lot of time, you know,
getting onto these things andit can be quite frustrating.
Takes a lot of patience,fortunately he has that. I don't.
So, if it was me, I'd just hang up.
- Sounds like he's the man for the job.
I mean, you can get caughtup between Aged Care, myGov,
(02:11):
My Aged Care, you can be dealingwith Geriatricians, GPs.
I mean there's a kind ofwhole ecosystem of numbers
that you might need to be calling.
- Yeah, it's a total minefield.
You need to be very organisedand somebody's got to do it.
So, you need to know who'sgoing to do that for you.
What sort of systemsdid you have in place Ham (Hamish)
for this sort of thing?
(02:31):
- We actually downsized dad'slife as much as possible,
which was (That's smart.)
a lot of admin at first.
But we kind of culled theadditional bank accounts
that he didn't need so thatit was all in one place.
We obviously moved dad intoresidential care, which meant
that we could get ridof all the bills. (Yeah)
For example, thatwere attached to the house.
We had mail redirected, wejust did anything we could
(02:52):
to simplify the arrangements.
I mean there was still a heck of a,
I was forever payingbills or dealing with...
- That is great advice for people.
- But it was actually really worthwhile.
I mean, even still, youknow, I'd need to call dad
and say, "I've got tolog into this thing".
"They're going to send a one-timepasscode to your phone".
"Can you read the pin from your phone"?
(03:13):
And that was always a nightmare.
I'd always have to go and get a carer
to go into his room, and you know,
these systems are not set upfor these sorts of situations.
But, you do find workaroundsand simplification, is key.
- Yeah, sounds smart.
- Experience vlog.
So, my mum had to get...
(03:34):
We had to inquire about gettinga reassessment for ACAT, and...
- This is Nick.
He's caring for his mum, who'sliving with Alzheimer's.
He spent so much timenavigating the healthcare
and dementia support system
that he started trackinghis own journey with it.
- Haven't heard anything,so called yesterday
on the 20th of March.
- What you're hearing now aresnippets of the video diaries
(03:56):
that Nick's recorded sincetaking on carer duties.
- Yeah, again, just anotherone of those frustrations
where you hear about this whenyou're sort of like, look,
I thought we'll follow the process,
you got to get on the phoneagain, talk to more people
and work out how... (fades)There is so much information.
Like that was an absolute,it was really valuable,
but it was just like alandslide of information.
And I could just see... (fades)
(04:16):
- Nick's in his early thirties
and he's pretty youngcompared to most carers.
And as an Engineer, he's aboutas tech savvy as they come.
But even still, Nick's beenstruggling to access support
for his mum since movinghome to look after her.
- I suppose mum's conditionwas, was manageable.
And, it was really about startticking the boxes, you know,
(04:36):
going through 'My AgedCare', getting assessed.
Working out what support athome services might look like.
And, from that it justsort of kept evolving.
And I think, the more I reflecton it, is there wasn't a
single part of it whereit was like, I was a carer
or all of a sudden you're, you're helping
(04:56):
with getting dressed or you'rehelping with personal care.
It's just little things over time when all
of a sudden you're like, "Oh my God"
"Look at all the things that I'm doing".
Then it was like, okay, wellwhat do we need to do now?
I can't fix the problem with my mum.
But as an engineer Ican, I can problem solve.
I can take control of allthe other bits and pieces
and I can start tryingto get things moving
and start advocating for her
(05:18):
and giving her a voice whenshe couldn't necessarily,
you know, convey her thoughts
or know how to navigatepart of the system.
- When my Dad firststarted to be diagnosed.
And even prior to that whenwe knew something was wrong.
It seems like there's this kind of,
avalanche of information
(05:38):
and systems and processesthat is quite hard
to get your head around evenif you're not suffering from
some kind of neurological disease.
- What was it likesuddenly being thrust into
the complexity of the healthcare system?
- It's, it feels like such a blur.
Like the, I sort of put it, Ifeel like I've lived a hundred
(05:58):
lives in the past 18 months.
But definitely at the beginning our,
our specialist geriatrician was sort
of fantastic in those initial steps.
She was like, "Get assessed".
She sort of gave us tips because
she was like, "It's 'painful".
Like, "I'm going to just sort oflay it out there".
"It's hard".
"You're going to be waiting 9-12 months
to get services".
So, having a little bitof certainty in the fact
(06:20):
that this isn't going to be a quick thing,
helped me at least havean appreciation for
what the road ahead looks like.
And, then I also just starteddoing my own research about
what the assessment process looks like,
what the things I might be asking for.
One other thing, therehas been an underlying
trend of that, is wheneverI ask people for anything
(06:40):
or I, you know, do a bit of research,
have all these questions.A lot of the time, I reckon 50%
of the time they'll say,
I actually dunno the answer to that.
No-one's ever asked me that before.
And it's just... (fades)
I, I remember startingto research at the time
when it was the ACAT
or whatever the assessment is.
Like, what are they going to ask about?
What am I going to needto know about my mum
and her current condition, to make sure
(07:01):
that we're giving anaccurate picture to them.
But, also knowing in thefuture, that 9-12 months
could be till you startgetting those services.
because you have to wait fora provider become available
and a whole lot of things.
We also needed to make surethat by the time that comes,
we, we're going to have eitherenough, enough funding
or the right services coming in.
(07:22):
- How easy would it be to navigate all
of this if you weren'tparticularly digitally literate?
- I don't know how people do it.
And they are the storiesI, I hear, I hear.
I go to support groups and youget this referral code.
And, they don't realise it'son them to go find a provider.
And then they lapse and thenall of a sudden they're going,
but I thought you guyswere going to contact
(07:43):
the home care provider.
And, then you get puton wait lists because
if you do fully managedpackages, then they need
to have their own carers andthey're all understaffed.
There isn't enough services,especially in rural
and regional Australia.
I went down the self-managed route,
which saves me a certainpercentage of fee,
but I take on all the responsibility.
(08:05):
- A lot of people struggleto handle that, you know,
and put in that effort and itmust took a lot of your time.
Fortunately, you are that sortof very organised individual
that could do it, buta lot of people can't.
- I know. And I, I think that'sthe real challenging thing
that we're going to haveto, as a government,
as a nation, solve,
"Is how do we make this easier for people
to get those services?".
(08:25):
And I did a, a presentation to one
of my support groups on self-managed
and at the end of it I, I putthis sort of slide, I said,
"These are all the digital skillsand skills that I've used".
And everyone just said, like,
"We, we can't, not, (notpossible) not possible".
And, you know, there's,
I just think there's a,there's a really big divide
and a, a big gap we'regoing to have to somehow solve
(08:45):
to get people to be able todo this with little or no
or have choice in howthey navigate the system.
(Music)
- Do all of the different parts
of the system talk to each other well?
- No. (laughing)
And I, I think it's sort of,
(09:07):
in the design of it, unfortunately.
There's a new aged caredata and digital strategy.
And one of the thingsthat came out of that.
Was, 'Tell your story once'.
That was a big theme. Iexperienced it recently at the
hospital, when I told mystory 10 times in three days.
They just don't have it.Like where is that information?
And, and the question I sort of thought
to myself when we wentto hospital, I'm like,
(09:28):
"Where is my mum's story"?
Like it's, it's piecemeal.
The assessment was done 18 months ago.
Specialist was done six months ago.
You know, it lives in my head.
There is no cohesive story that sort
of follows you through this journey.
It is different pieces of the puzzle.
- Do you know though, I saw a geriatrician
with dad earlier this yearand he had a new AI tool
(09:48):
and it was a 'voice-to-text' thing.
But the AI tool actuallygenerated a document version
of Dad's story.
It was quite incredible.
And, I actually found, asthe person supporting him,
It was very useful, because I could
then share that with my siblings.
- And a reference too.
- Yeah, and say look, this iswhere things are at, this is
what the geriatrician is saying about,
(10:10):
you know, the near future.
You know, maybe familiariseyourself with this
and if you have questionsnow's the time to,
to kind of dive into that.
It was a really good, available thing...
- Because, not only in your positiongoing to all those appointments.
But for yourself to relay it to siblings.
And other people, it's draining.
You know, you've got to keep going over it
(10:31):
and it's very hard to remember everything
and pull the whole thing together.
- Well I, I definitely feelthat, even this, my recounting
of the story changes depending
on how I'm feeling on the day.
- Of course.
- What's going on in your life.
And those tools, they're really powerful.
Like, I remember, anddefinitely one of the
other things is, isgetting copies of reports.
(10:51):
And keeping like that'Bible' as live as you can
and keeping hard copies of things.
Obviously, I do it digitally.
But, it all of a sudden whenthere is a crisis
You don't have any of the information
and you've got to startremembering, you know.
It just adds to thestress, and the overall
turbulence of goingthrough that experience
because you just can't get it.
- One of the first things that has
(11:12):
to happen when you are in the carer
or support role, is that youhave to do the legal stuff
that enables you to do that.
There's 'Enduring Power of Guardianship'.
'Enduring Power of Attorney'.
What is that? How does that happen?
And how complex is that?
(11:32):
- We were a little bit lucky as
I suppose you could say, my mum
before a diagnosis, had justhappened to set up, the
Enduring Guardianship andEnduring Power of Attorney.
And I, the way I sort
of put it, is in the 'EnduringGuardianship' is about
decisions about life,and 'Power of Attorney'
about financial decisions.
(11:53):
On that, I recentlyhad an experience where
it turns out our power ofattorney, which we've had
for two years wasn'toperational, because of one
of the clauses. And, I gottold that from the bank.
I was just, I was gobsmacked.
I was like, I've had thisdocument, I've given it to people.
No one's told me this.
(That's crazy.)- Yeah I had to get, you know,
then another GP appointment.
Another letter that's got to get written.
(12:14):
The other thing just on, you know,
being an authorized representative,I think is such
an undervalued piece of the puzzle.
It's sort of the one thingI learned was, any system,
government organization, just become an
authorised representative on it.
Like, I myself, havea 'My Age Care' number
and I have direct accessto my mum's account
as a support network.
(12:35):
And that to me, means, I can go in
and see that obviously it helps having,
I can log in on the myGov
but instead of doingtwo-factor authentication
and then my mum having to be on the phone
and the confusion all around that.
- I mean I don't do any of that now.
Ty does all of it.
And, when we started thisprocess, I was learning about
(12:55):
all of it like yourself, butit's just drained away now.
And I can't remember, I can'teven remember the terminology
that you just recited.
- But, I mean, when you sit
and hear Nick explaining all of this.
You know you're aware that, your husband
and your daughter are doingall of these things (Mm-hmm) for you
How does that feel?
(13:16):
How does it sound to you whenyou are hearing the level
of detail and complexity that's involved?
- Um, I think now, I've cometo terms with it more.
I've struggled at first because I'm so
independent don't, Idon't like the idea of any
of that now, but, I've sort ofbecome at peace with it.
And, I just accept that I just can't store
(13:37):
that information anymore andI struggle with looking at any
of that stuff on the screen.
Something you would do easily.For me, I just,
it's just too overwhelming.
The more I haven't done it,
the less I'm interested in doing it.
In fact, I can't even tell youthe last time I ever looked
at a bank or an account
(13:57):
or ever, we, I couldn't,
wouldn't even withdrawmoney from an ATM.
I, I've no idea, with that.
And, I just pay as you go. (chuckles)
- And what's a, I mean the at the core of
that is trust, right?
- A hundred percent.
- Yeah. So can you describewhat it's like to sort of give
that trust to someone that's in your life?
because that's so, total, youknow, what you are doing.
(14:21):
- I'm so fortunate that I would trust them
with my life anyway.
I'll have no qualms at all.
At hundred percent, I know theyhave my best interests at heart
so I'm very at peace with that.
But, it would be awful ifyou had a tumultuous type
of relationship where you weren'tso relaxed with the person
(14:43):
that was going to be in charge of you.
So, I'm very, very gratefulthat I don't have that worry.
You know, bigger fish to fry.
I don't worry about it.
I could borrow it from youif I ran out. (laughing)
(Music)
(Music)
(15:04):
- So Nick, it sounds like you're trying
to come at this as an engineer.
You're very sensible
and thoughtful obviouslyabout processes and timelines.
But, this is also your mumthat we're talking about.
It's an emotional experience.
How do you balance the emotion
with the responsibility side of caring?
- It took me a while to gofrom being an organiser,
(15:26):
just the day-to-day things toactually saying I, I identify
as a carer and I needto look after myself.
So, I reached outthrough the Carer Gateway
to seek out counsellingservices through them
and you know, I thoughtthey were going to sit down.
I was like, I don't want strategies.
I don't want to sit down
and you tell me or do these things.
And I remember thisone counsellor sat down
(15:47):
and said, these are allthe things I can do.
And one of them was, "I canjust sit here and listen".
And you know, every fortnight or
whenever we had theappointments, no matter how much
could be going on and I'mso busy with organising
and caring, those sessionswere so important just
to sit down, unload on,on an impartial party
and have some of mythoughts reflected back
(16:08):
and help me process some ofwhat I was going through.
- And Dementia Australia alsooffers counselling services.
So, we will put links to both
of those resources in our episode notes.
But Nick, what was the impactof that counselling for you?
How did it help people listeningmight be in your situation?
They might have so much on their plate
that they don't necessarily feel like
it's an immediate priority?
(16:30):
- I feel like it justfreed up the, the mental
and emotional state to keep going.
Really for me, just havingthat, that person there,
having that hour, that was just for me.
I'd always leave likeI'd released a burden
and then I could reset
and I could get back on withwhatever disaster you're trying
to solve at that day. (laughs)That day, week, month.
- And Nick, you are alsovery young as a carer.
(16:52):
You're in your thirties.
How does being a carerimpact your social life?
- When I was sort of going through this,
I was getting counselling andI was going to support groups.
That, that was my life.
That was so much was,having these conversations
and getting support from people in similar
situations who had been through it.
And, I would obviously keep my friends up
to date when I'd saw them.
(17:13):
But, for me personally,I almost sort of said,
I'll give you the update butI just want us to be friends.
I want me to be 30 again (yeah)
I don't need tobe reliving it every time I
saw them, and I was justtrying to find other avenues
and other areas for me toget that emotional support.
- What top tips would yourecommend were put in place
(17:33):
to help people in your positionwho've got to take control
and and help somebody who's now diagnosed?
- Oh, so many. (laughter)
I think there's probably a few key ones.
I think always ask questions,
always be thinking ahead
and you're the expert inthe care of your loved one
(17:55):
or the person you're caring for.
And a lot of the time, from my experience,
you'll have someone come inand they'll do an assessment
that takes half an hour.
And that might not necessarilycapture some of the things
that, that you might want
or you might not understand what,
what services they can offer.
So, always asking thequestion about, you know,
what else, what else can we get?
What else can we get inthe home, to really sort
of tease out, they might notcapture some of the things
(18:17):
that have been discussed in
that little half an hour assessment.
The other big one is, again,different for everyone, but
try and keep a record of whoyou're talking to and
the dates (that's key)and the people that's...
- A dedicated book just for this.
- Yeah. And I call mymum's file the 'Bible'
and everything goes...
- We that's that's..
- You've got one too. (laughter)
(18:37):
- I've got one, high five. Yeah.
And that's what I call likeeverything goes, goes into that
because you just so quicklyget overwhelmed with the
the numbers you're calling,the people you're talking to
- And everybody changes as well.
You get a different personwho doesn't know the backstory
and you've got to, you'reconstantly reviewing
everything that's happened.
- How do you articulatewhat that function is
(19:00):
and what that role is whenyou're helping your mum
interact with the health system?
- I, I don't really knowhow I'd, I'd term it.
But, what I used to sort of sayto my mum, I was like,
"Mum, you just focus on living"
"And I'll sort out all theadministrative burden".
Obviously, communicated a lot during our
(19:20):
sessions with our specialist.
And they helped us maybeidentify future needs.
And you know, when thingswere getting more difficult at
home, there were just times I had
to have those conversations with my mum
and I was like, you know,this is about helping you
but it's also about helping me.
Because you know, what we're really trying
to do is keep you here athome as long as possible.
So, sometimes I had to sortof just almost ask her,
(19:42):
"Can you please accept morehelp" because it's going to
help me, and we cankeep in this situation.
- If you look back onthe whole experience now.
What have you learned about caring?
- That it's hard.
Every time I look back on it, that I go,
"Oh yeah, God, I forgot about that".
"That was silly", or thatwas, "I can't believe
that thing happened".
But I don't think there'sany, nothing necessarily
(20:03):
that, that I've learned from it.
Apart from one reflection that I always
do have when I read backthrough, through the report is
you grow up and you get into a career
and it's about, for me,you know, the promotion
and it's just, you'retrying to create a sense
of accomplishment ineverything you're doing.
And I found that whenI went to a caring role
(20:23):
and I'm trying to do all these things,
but you never had thatsense of accomplishment
because it's just the next thing, it's,
it's this never ending listof things that you have
to, to go through.
And to me, that was, atthe time quite, it was
so disheartening and it's something
whenever I look back on it,I just remember thinking,
you get to the thing and youalmost want someone to call you
and go, "Hey! Good job". "Yougot your package". You know.
- And also a little bitof that is that, you know,
(20:45):
that's usually the roleof your mum, you know,
that would be therefor you to go, "Hey mum",
"This is where I'm at".
And but instead, sadlythat's taken away from you
and that role as we wediscussed has been reversed now.
And so, you sort of, you missout on that a little bit.
- Definitely like, you know,when I, when I was working my,
my mum would be like,"How's the boss going"?
"How's the project going"? You know,
(21:06):
you would have those conversations
and then all of a suddenit's almost that part of life
where conditioned tosort of just evaporates
and you just get stuck in thisbig mess of things you need
to do with no end pointwith what is really,
diminishing returns at the end of the day.
Sadly with my mum, withher quite, quick decline.
(Music)
(21:31):
- So, some pretty big changesrecently for your mum
and I guess consequently for you.
What's happened, what's changed?
- So, my mum had Covida couple of months ago.
And that made her really quiteunwell as it did all of us.
She hadn't had Covid at all.
And, went to the GP, endedup going to emergency.
(21:51):
Everything was, was clear.
And then over the course ofabout three days,
following her recovering from Covid.
The decline was unbelievably rapid.
I mean multitudes, than the previous day.
The mobility, the paranoia, the confusion.
My mum can sleep througha storm, now she's
getting up at night asking,"What are we doing"?
(22:12):
"What's going on"? "Where am I"?One minute, you know,
I can't leave her because Igive her security.
The next minute, I mean,I'm enemy number one.
And then over the courseof three days we were sort
of waiting to talk to a specialist
or a GP about permanent care.
And had a chat to areally good family friend.
(22:33):
And she just said, "Look,this is an acute decline
Hos, you needed to go to hospital".
That's, that's what it is.
It was just so surprising
that I needed someone to tell me that.
It was like I wasn't going tomake that decision myself.
Luckily, I, a speech therapistwas there that day as well
and she just said, I can see how scared
and frightened you are likein your facial expressions.
It must be horrifying being inyour mind and body right now.
(22:55):
And, had a chat to mum
and she was happy to take an ambulance.
And now we are looking atplacing her in permanent care.
She was very adamant shenever wanted to go, into care.
And she was always, youknow, that was in the back
of her mind, "Just don't put me in a home.
Don't put me in a home".
But after discussing withthe specialist, my sister
(23:16):
and I just made the proactive decision
to just start lookingat places to get a feel
for, for what they are.
So, when the time comes we can have
that discussion with my mum.
And, thankfully or luckily, you know,
we had looked at a few places,
but, for me personally tosort of desensitize myself,
I actually volunteered
through the Aged CareVolunteer Visitors Scheme.
(23:38):
And you go into a nursinghome and or someone at at home
and you just visit them for an hour.
- That's fantastic.
That gave you a genuine insight as well.
- Yeah. And also, insightinto the homes in the area.
Getting people's opinionI think is important.
There's never going to bea right or wrong answer.
But I just find for me themore information I can get,
the more informed decision I, I can make.
(23:59):
- Now that the time has come for this.
How are you feelingabout your mum going into
permanent residential care?
- I feel, a large part ofme, wants to take her home
and try and care for her, at homejust a little bit longer.
Because she's currentlyhaving to transfer to respite
before we potentially get a bed.
And I have to keeptelling myself like, "No",
(24:20):
like "I can't provide that support".
But mum, my mum is also awareenough that she realises
that she does need thatround-the-clock care
and that's something thatcan't be provided at home.
She's obviously up, upset about it.
But, I'm trying to lookat the glass half full.
And I think that she will havea, a fuller life in a home
that is designed to, tostimulate and to keep...
(24:42):
- Support her, completely.
- Instead of her just beingat home and not being active
and me not being able togive her what she needs.
- What do you remembermost fondly about your mum?
- Isn't it strange? I knewthis question would come up.
And do you know what's really hard.
And I think it's probablythe hardest thing
to process, is the last 18 months.
(25:02):
It's probably the longest I've spent
with my mum since I was a child.
And that's so much allI can remember of her.
And I find it so hard tothink back to what she was before.
That question ofwhat, what my mum was like.
I get a lot of itthrough her, her friends.
And, you know, my, one of myreally good mates came over
and he was like, oh, yourmum was so quick-witted and,
(25:24):
and funny and that,that helps me remember.
That helps remind me of, of who she was
because I do just havethis real visceral feeling
of the person she isnow because that is what
I've lived for, forwhat feels like forever.
- I think obviously.
Well done Nick. You've looked
after him mum beautifullyby the sound of things.
(25:45):
- Thank you.
(Music)
- As Nick pointed out, he'sabout as digitally literate
as it gets, but if you're not an engineer
or a technology whiz, what do you do?
Kaele Stokes is the Executive Director
of Services, Advocacy andResearch at Dementia Australia.
She's worked with countlessfamilies trying to access care
(26:07):
and support, and she's workedwith the agencies that offer
that care and support.
So, she knows how toughit is for new carers.
- I think Nick's story reallydoes reflect the challenges
that lots of familycarers have when it comes
to supporting a personliving with dementia.
We've spoken to thousands ofcarers over the last few years
(26:30):
and the fundamental challengesthat they experience tend
to be the same, which is not knowing
what they should even be looking for.
Not knowing what services areout there that are available
for people that are living with dementia.
Not knowing whether services are general
or more specific to peopleliving with dementia.
We, we hear all these sorts of stories.
(26:50):
And, unfortunately we'vestill got a long way to go
before we have a really integrated system
that allows people tomove through healthcare,
disability, aged care ina, in a seamless way.
It's sort of the, the 'holy grail'
of service provision, butwe've got a long way to go.
- It, it strikes me though,
that the reason why someonemight have reached a point
(27:11):
of diagnosis, is that they'restruggling with things
and so, suddenly someonethat is finding it hard
to make decisions or hard to plan
or is having difficultyprocessing things in front
of them, is being presentedwith the biggest wave
of decisions and new information
that they might haveexperienced in some time.
(27:33):
Is there any way around that?
- You're absolutely right, Hamish.
We do tend to hear from people,
particularly whenthere's a point of crisis.
And a lot of the work
that Dementia Australiais doing, is trying to work
with people to pre-empt those well
or avoid those crises altogether.
So, having a much moreplanned conversation
around what's going to happen,the sorts of conversations
(27:56):
that Jim, you've been talkingabout in, in previous episodes
where, it's around understanding the
trajectory of, of dementia.
What sort of challenges might come up
but also knowing who totalk to at the times where
things do escalate or changein a, in a more sudden way.
Because we know that thatdoes happen as, as
part of a dementia trajectory.
(28:16):
It's not a a steady trajectory.
It's got spikes and,
and changes that can occur pretty quickly.
- That's so right.
I think it's really difficultwhen you come to terms with
somebody becoming a carer
or even to look at yourself as a carer.
Even Ty said on the wayhere today, you know,
he still doesn't considerhimself to be my carer.
(28:37):
And I said, "Well, you do care for me
and it's care and support".
So it's a 'Segway' in, isn't it? You know?
- It is. Yeah, it is.
And I think, you know,
it does take people a littlewhile to, to adjust to that.
And you know, that can alsobe reflected in the way that
people engage with each other as well.
So, there's that shift in dynamic
or shift in communication that
(28:59):
that can be really awkwardat the beginning and,
and challenging to, to havethat sort of conversation
where you're ultimatelyresponsible for somebody else.
- Not to be too boring about it,
but what's the shopping listof platforms and gateways
and services that you'regoing to hear about
if you're going through this, now
and you're maybe at thestart of the journey?
- Probably the firstport of call is talking
(29:21):
to your healthcare professional.
So your GP, around the changesthat you're experiencing.
They may or may notrefer you to a specialist
and that could be aneurologist, a geriatrician,
a psychogeriatrician, somekind of specialist that has
dementia in their, intheir specialisation.
And, that can be part ofa, a hospital system.
(29:44):
It might be a private practise.
So, getting a formal diagnosis through,
through those means canbe really important.
And then often we do hear
that people can live pretty well at home
before they need anyformal support services.
So, it might be the accessingpost diagnostic support
programmes like the ones
that Dementia Australia has,can be useful for, for planning
(30:06):
and thinking about the future.
But often there is a, a, youknow, sustained period of time
where people can live independently
and continue to, to do thethings that they've been doing.
Where care needs do start tochange, depending on the age
of the person, and I hatethe phrase "care recipient",
(laughs)
but depending on the ageof the person, it might be
(30:26):
that someone has to apply for supports
through the NationalDisability Insurance Scheme.
So there is a, an assessmentprocess that they go through
to access those supports.
If they're over the age of 65,then they would be directed
to My Aged Care, which is the,
the federal government platformfor all aged care services,
(30:48):
whether they're delivered in the home
or in a residential care setting.
All of those services, irrespective
of whether it's the NationalDisability Insurance Scheme
or My Aged Care, requirean assessment from,
from independent staff thatwill look at the, the care needs
of, of the individual and then,you know, plan from there.
- So when we went throughthis, I was told, you need
(31:09):
to get your codes.
You're sort of smirking at
that question, what does that mean?
- Unfortunately people who workin the system tend to forget
that the system iscompletely incomprehensible
to anybody not working in the system.
So, understanding thedifferent components of, of
an aged care assessment
and under understanding,you know, the results
(31:31):
and how that translates into care.
Should be supported by theaged care system or the,
or the disability system tohelp people understand it.
But it can be really complicated
and people often dospeak another language.
So, that can be really challenging
and that's where organisationslike Dementia Australia can
(31:52):
be helpful because, whilst we are
not directly involved in doing assessments
through the age caresystem, et cetera, we do
have the ability to support people to go
through the assessment process
and help them understand
what it actually meansin 'lay people's' terms.
- So what sort of progressdo you think is happening
(32:13):
to make those servicesmore cohesive for people?
Can you see steps of progression?
- I think there is steps
and I, I have been around thesector for longer than I care
to think about, and it's slow.
And you know, often peopletalk to me about the fact
that you know, they've beentrying to see change for a,
(32:34):
for a long time and theirtime's running out right.
And they want to seechange and it really slow because
we're talking about legislative systems
that have to talk to each other.
The Department of Health andAged Care does have a reform
branch that's looking at all
of the different agedcare reforms, including
how legislation "harmonizes",
I think is the word theyyou use with other parts
(32:56):
of the system, includinghealthcare, hospitals, disability.
But, you know, it's slow going.
- Just from a personal pointfrom my experience.
It is so lonely, you're so isolated
once you get thatdiagnosis because you just
don't know where to begin.
I think what Dementia Australia provides,
I think you are in it, soyou forget how amazing it is.
(33:18):
And from what I've seen, like it is
just such a fantastic crutchfor people to lean on.
Even to be advised to come and be
soothed, by our podcast, whichwhich gives you so many
tidbits and so much info.
- Yeah.- Like those things are so invaluable
to anybody who's moving into that
care (Yeah) situation.
(33:39):
You know, it feels very lonely.
- Yeah. And Nick andother carers talked about
you know, just the amount of information.
(he was amazing) they try to absorb in,
in understanding their caringrole and what they need to do.
And he was fortunate
that his geriatrician waswell informed about the system
and able to provide some initial guidance.
But lots of people don'tnecessarily have that
or they have conversationswhere it's like,
(34:00):
well you've got a diagnosisof dementia, you know,
we'll see you, you whenyou, when you need formal
care and good luck.- Exactly.
- And there's somuch more that can be done in
that, you know, in thatso good intervening period
- On that, when I get approached
and asked questions about it,I'm always encouraging people
to, to sort of get help andguidance and assistance early.
(34:22):
But a lot of the feedbackis, well, we'll cross
that bridge when we come to it.
There's a kind of feeling that
unless we're right in theworst of it, we're just kind
of hands off for now.
Is there a time that'sright to start seeking some
of this assistance?
- Having conversationsas early as possible,
even if they are uncomfortable
(34:44):
and a bit, you know,'squirmy', is important
because it can take theheat off at times where
there are decisions to be made.
And you know, family carerswill often talk about
their reassurance in havingconversations earlier
because even if care needs change
and a person with dementia can't be part
(35:04):
of the conversation inthe way that they used to,
the family members feel thatthey've got a good sense of
what that person wanted
because they've spoken tothem about it as opposed
to guessing and thinking, oh,I hope that's what you know,
they would've wanted if theywere able to to talk about it.
- Kaele, thank you very much.- Thank you. That's
- Such great advice. Thanks for coming in.
- Thank you.
(35:25):
(Music)
(Music)
- If you do want some reallynitty gritty, practical advice,
make sure you listen to ourCompanion Helpline episode.
- You'll hear from Kristen.
She's one of the advisorson Dementia Australia's free
helpline, and thehelpline's available 24/7
(35:48):
So if you need somebody to talk to,
- You can find the bonushelpline episode wherever you
listen to podcasts or on theDementia Australia website.
You can also call the helplinedirectly for tips and advice.
It's 1800 100 500.
- Hold the Moment is a podcastfrom Dementia Australia
produced by Deadset Studios.
(36:09):
You can find more episodes
and resources on DementiaAustralia's website:
dementia.org.au.
The show is hosted by me, Jim Rogers
- And by me Hamish McDonald.
The executive producers areKellie Riordan and Gia Moylan.
The Producers are Madeleine Hawcroft
and Liam Riordan.
Production Manager is Ann Chesterman.
(36:30):
Sound Design by Ryan Pemberton.
A special thanks to the wholeteam at Dementia Australia
and to everyone who sharedtheir stories on this podcast.
(Music)
(Music)
(Music)
- Hello, my name is Kevin.
I am a First Nations advocatewith Dementia Australia.
For more than 50,000 years,we have come together
to trade knowledge, to learn and to teach.
Today, we joined tokeep up that tradition.
So with that in mind,we now pay our respects
to the traditional owners, to Elders past
and present, to those First Nations people
(00:22):
joining us here today.
(Dial Tone)
(Phone Ringing)
(Music Playing)
- Your call is important to us.
You are now 22nd in the queue.
(00:45):
(Music Playing)
- Now, I'm sure you'refamiliar with that sound.
Whenever you've had tobook an appointment, talk
to a government agency,
or even just changeyour mobile phone plan.
You've probably spentenough time on hold to know
that you never want to hear it again.
- But if you're caring forsomeone living with dementia,
(01:05):
unfortunately you just can'tescape calls like this.
In fact, it could becomethe background noise
of your entire caring journey.
- Hey there, I'm Hamish Macdonald.
I'm a journalist and Irecently helped manage the care
for my Dad who was diagnosed
with Lewy body dementia and Parkinson's.
- And I'm Jim Rogers.
I'm living with Younger Onset Alzheimer's.
(01:27):
This is Hold the Moment, apodcast from Dementia Australia.
And this episode helps you tonavigate the healthcare system
and access support as a Carer.
(Music Playing)
- So Jim, is it you waitingon hold, on the phone,
or is it your husbandTy, or is it the kids?
- It's definitely not me, it'll be Ty.
(01:48):
He does all the nittygritty of that sort of stuff
and it drives him mad.
- Do you know how much of it there is?
- I know that he spendsa lot of time, you know,
getting onto these things andit can be quite frustrating.
Takes a lot of patience,fortunately he has that. I don't.
So, if it was me, I'd just hang up.
- Sounds like he's the man for the job.
I mean, you can get caughtup between Aged Care, myGov,
(02:11):
My Aged Care, you can be dealingwith Geriatricians, GPs.
I mean there's a kind ofwhole ecosystem of numbers
that you might need to be calling.
- Yeah, it's a total minefield.
You need to be very organisedand somebody's got to do it.
So, you need to know who'sgoing to do that for you.
What sort of systemsdid you have in place Ham (Hamish)
for this sort of thing?
(02:31):
- We actually downsized dad'slife as much as possible,
which was (That's smart.)
a lot of admin at first.
But we kind of culled theadditional bank accounts
that he didn't need so thatit was all in one place.
We obviously moved dad intoresidential care, which meant
that we could get ridof all the bills. (Yeah)
For example, thatwere attached to the house.
We had mail redirected, wejust did anything we could
(02:52):
to simplify the arrangements.
I mean there was still a heck of a,
I was forever payingbills or dealing with...
- That is great advice for people.
- But it was actually really worthwhile.
I mean, even still, youknow, I'd need to call dad
and say, "I've got tolog into this thing".
"They're going to send a one-timepasscode to your phone".
"Can you read the pin from your phone"?
(03:13):
And that was always a nightmare.
I'd always have to go and get a carer
to go into his room, and you know,
these systems are not set upfor these sorts of situations.
But, you do find workaroundsand simplification, is key.
- Yeah, sounds smart.
- Experience vlog.
So, my mum had to get...
(03:34):
We had to inquire about gettinga reassessment for ACAT, and...
- This is Nick.
He's caring for his mum, who'sliving with Alzheimer's.
He spent so much timenavigating the healthcare
and dementia support system
that he started trackinghis own journey with it.
- Haven't heard anything,so called yesterday
on the 20th of March.
- What you're hearing now aresnippets of the video diaries
(03:56):
that Nick's recorded sincetaking on carer duties.
- Yeah, again, just anotherone of those frustrations
where you hear about this whenyou're sort of like, look,
I thought we'll follow the process,
you got to get on the phoneagain, talk to more people
and work out how... (fades)There is so much information.
Like that was an absolute,it was really valuable,
but it was just like alandslide of information.
And I could just see... (fades)
(04:16):
- Nick's in his early thirties
and he's pretty youngcompared to most carers.
And as an Engineer, he's aboutas tech savvy as they come.
But even still, Nick's beenstruggling to access support
for his mum since movinghome to look after her.
- I suppose mum's conditionwas, was manageable.
And, it was really about startticking the boxes, you know,
(04:36):
going through 'My AgedCare', getting assessed.
Working out what support athome services might look like.
And, from that it justsort of kept evolving.
And I think, the more I reflecton it, is there wasn't a
single part of it whereit was like, I was a carer
or all of a sudden you're, you're helping
(04:56):
with getting dressed or you'rehelping with personal care.
It's just little things over time when all
of a sudden you're like, "Oh my God"
"Look at all the things that I'm doing".
Then it was like, okay, wellwhat do we need to do now?
I can't fix the problem with my mum.
But as an engineer Ican, I can problem solve.
I can take control of allthe other bits and pieces
and I can start tryingto get things moving
and start advocating for her
(05:18):
and giving her a voice whenshe couldn't necessarily,
you know, convey her thoughts
or know how to navigatepart of the system.
- When my Dad firststarted to be diagnosed.
And even prior to that whenwe knew something was wrong.
It seems like there's this kind of,
avalanche of information
(05:38):
and systems and processesthat is quite hard
to get your head around evenif you're not suffering from
some kind of neurological disease.
- What was it likesuddenly being thrust into
the complexity of the healthcare system?
- It's, it feels like such a blur.
Like the, I sort of put it, Ifeel like I've lived a hundred
(05:58):
lives in the past 18 months.
But definitely at the beginning our,
our specialist geriatrician was sort
of fantastic in those initial steps.
She was like, "Get assessed".
She sort of gave us tips because
she was like, "It's 'painful".
Like, "I'm going to just sort oflay it out there".
"It's hard".
"You're going to be waiting 9-12 months
to get services".
So, having a little bitof certainty in the fact
(06:20):
that this isn't going to be a quick thing,
helped me at least havean appreciation for
what the road ahead looks like.
And, then I also just starteddoing my own research about
what the assessment process looks like,
what the things I might be asking for.
One other thing, therehas been an underlying
trend of that, is wheneverI ask people for anything
(06:40):
or I, you know, do a bit of research,
have all these questions.A lot of the time, I reckon 50%
of the time they'll say,
I actually dunno the answer to that.
No-one's ever asked me that before.
And it's just... (fades)
I, I remember startingto research at the time
when it was the ACAT
or whatever the assessment is.
Like, what are they going to ask about?
What am I going to needto know about my mum
and her current condition, to make sure
(07:01):
that we're giving anaccurate picture to them.
But, also knowing in thefuture, that 9-12 months
could be till you startgetting those services.
because you have to wait fora provider become available
and a whole lot of things.
We also needed to make surethat by the time that comes,
we, we're going to have eitherenough, enough funding
or the right services coming in.
(07:22):
- How easy would it be to navigate all
of this if you weren'tparticularly digitally literate?
- I don't know how people do it.
And they are the storiesI, I hear, I hear.
I go to support groups and youget this referral code.
And, they don't realise it'son them to go find a provider.
And then they lapse and thenall of a sudden they're going,
but I thought you guyswere going to contact
(07:43):
the home care provider.
And, then you get puton wait lists because
if you do fully managedpackages, then they need
to have their own carers andthey're all understaffed.
There isn't enough services,especially in rural
and regional Australia.
I went down the self-managed route,
which saves me a certainpercentage of fee,
but I take on all the responsibility.
(08:05):
- A lot of people struggleto handle that, you know,
and put in that effort and itmust took a lot of your time.
Fortunately, you are that sortof very organised individual
that could do it, buta lot of people can't.
- I know. And I, I think that'sthe real challenging thing
that we're going to haveto, as a government,
as a nation, solve,
"Is how do we make this easier for people
to get those services?".
(08:25):
And I did a, a presentation to one
of my support groups on self-managed
and at the end of it I, I putthis sort of slide, I said,
"These are all the digital skillsand skills that I've used".
And everyone just said, like,
"We, we can't, not, (notpossible) not possible".
And, you know, there's,
I just think there's a,there's a really big divide
and a, a big gap we'regoing to have to somehow solve
(08:45):
to get people to be able todo this with little or no
or have choice in howthey navigate the system.
(Music)
- Do all of the different parts
of the system talk to each other well?
- No. (laughing)
And I, I think it's sort of,
(09:07):
in the design of it, unfortunately.
There's a new aged caredata and digital strategy.
And one of the thingsthat came out of that.
Was, 'Tell your story once'.
That was a big theme. Iexperienced it recently at the
hospital, when I told mystory 10 times in three days.
They just don't have it.Like where is that information?
And, and the question I sort of thought
to myself when we wentto hospital, I'm like,
(09:28):
"Where is my mum's story"?
Like it's, it's piecemeal.
The assessment was done 18 months ago.
Specialist was done six months ago.
You know, it lives in my head.
There is no cohesive story that sort
of follows you through this journey.
It is different pieces of the puzzle.
- Do you know though, I saw a geriatrician
with dad earlier this yearand he had a new AI tool
(09:48):
and it was a 'voice-to-text' thing.
But the AI tool actuallygenerated a document version
of Dad's story.
It was quite incredible.
And, I actually found, asthe person supporting him,
It was very useful, because I could
then share that with my siblings.
- And a reference too.
- Yeah, and say look, this iswhere things are at, this is
what the geriatrician is saying about,
(10:10):
you know, the near future.
You know, maybe familiariseyourself with this
and if you have questionsnow's the time to,
to kind of dive into that.
It was a really good, available thing...
- Because, not only in your positiongoing to all those appointments.
But for yourself to relay it to siblings.
And other people, it's draining.
You know, you've got to keep going over it
(10:31):
and it's very hard to remember everything
and pull the whole thing together.
- Well I, I definitely feelthat, even this, my recounting
of the story changes depending
on how I'm feeling on the day.
- Of course.
- What's going on in your life.
And those tools, they're really powerful.
Like, I remember, anddefinitely one of the
other things is, isgetting copies of reports.
(10:51):
And keeping like that'Bible' as live as you can
and keeping hard copies of things.
Obviously, I do it digitally.
But, it all of a sudden whenthere is a crisis
You don't have any of the information
and you've got to startremembering, you know.
It just adds to thestress, and the overall
turbulence of goingthrough that experience
because you just can't get it.
- One of the first things that has
(11:12):
to happen when you are in the carer
or support role, is that youhave to do the legal stuff
that enables you to do that.
There's 'Enduring Power of Guardianship'.
'Enduring Power of Attorney'.
What is that? How does that happen?
And how complex is that?
(11:32):
- We were a little bit lucky as
I suppose you could say, my mum
before a diagnosis, had justhappened to set up, the
Enduring Guardianship andEnduring Power of Attorney.
And I, the way I sort
of put it, is in the 'EnduringGuardianship' is about
decisions about life,and 'Power of Attorney'
about financial decisions.
(11:53):
On that, I recentlyhad an experience where
it turns out our power ofattorney, which we've had
for two years wasn'toperational, because of one
of the clauses. And, I gottold that from the bank.
I was just, I was gobsmacked.
I was like, I've had thisdocument, I've given it to people.
No one's told me this.
(That's crazy.)- Yeah I had to get, you know,
then another GP appointment.
Another letter that's got to get written.
(12:14):
The other thing just on, you know,
being an authorized representative,I think is such
an undervalued piece of the puzzle.
It's sort of the one thingI learned was, any system,
government organization, just become an
authorised representative on it.
Like, I myself, havea 'My Age Care' number
and I have direct accessto my mum's account
as a support network.
(12:35):
And that to me, means, I can go in
and see that obviously it helps having,
I can log in on the myGov
but instead of doingtwo-factor authentication
and then my mum having to be on the phone
and the confusion all around that.
- I mean I don't do any of that now.
Ty does all of it.
And, when we started thisprocess, I was learning about
(12:55):
all of it like yourself, butit's just drained away now.
And I can't remember, I can'teven remember the terminology
that you just recited.
- But, I mean, when you sit
and hear Nick explaining all of this.
You know you're aware that, your husband
and your daughter are doingall of these things (Mm-hmm) for you
How does that feel?
(13:16):
How does it sound to you whenyou are hearing the level
of detail and complexity that's involved?
- Um, I think now, I've cometo terms with it more.
I've struggled at first because I'm so
independent don't, Idon't like the idea of any
of that now, but, I've sort ofbecome at peace with it.
And, I just accept that I just can't store
(13:37):
that information anymore andI struggle with looking at any
of that stuff on the screen.
Something you would do easily.For me, I just,
it's just too overwhelming.
The more I haven't done it,
the less I'm interested in doing it.
In fact, I can't even tell youthe last time I ever looked
at a bank or an account
(13:57):
or ever, we, I couldn't,
wouldn't even withdrawmoney from an ATM.
I, I've no idea, with that.
And, I just pay as you go. (chuckles)
- And what's a, I mean the at the core of
that is trust, right?
- A hundred percent.
- Yeah. So can you describewhat it's like to sort of give
that trust to someone that's in your life?
because that's so, total, youknow, what you are doing.
(14:21):
- I'm so fortunate that I would trust them
with my life anyway.
I'll have no qualms at all.
At hundred percent, I know theyhave my best interests at heart
so I'm very at peace with that.
But, it would be awful ifyou had a tumultuous type
of relationship where you weren'tso relaxed with the person
(14:43):
that was going to be in charge of you.
So, I'm very, very gratefulthat I don't have that worry.
You know, bigger fish to fry.
I don't worry about it.
I could borrow it from youif I ran out. (laughing)
(Music)
(Music)
(15:04):
- So Nick, it sounds like you're trying
to come at this as an engineer.
You're very sensible
and thoughtful obviouslyabout processes and timelines.
But, this is also your mumthat we're talking about.
It's an emotional experience.
How do you balance the emotion
with the responsibility side of caring?
- It took me a while to gofrom being an organiser,
(15:26):
just the day-to-day things toactually saying I, I identify
as a carer and I needto look after myself.
So, I reached outthrough the Carer Gateway
to seek out counsellingservices through them
and you know, I thoughtthey were going to sit down.
I was like, I don't want strategies.
I don't want to sit down
and you tell me or do these things.
And I remember thisone counsellor sat down
(15:47):
and said, these are allthe things I can do.
And one of them was, "I canjust sit here and listen".
And you know, every fortnight or
whenever we had theappointments, no matter how much
could be going on and I'mso busy with organising
and caring, those sessionswere so important just
to sit down, unload on,on an impartial party
and have some of mythoughts reflected back
(16:08):
and help me process some ofwhat I was going through.
- And Dementia Australia alsooffers counselling services.
So, we will put links to both
of those resources in our episode notes.
But Nick, what was the impactof that counselling for you?
How did it help people listeningmight be in your situation?
They might have so much on their plate
that they don't necessarily feel like
it's an immediate priority?
(16:30):
- I feel like it justfreed up the, the mental
and emotional state to keep going.
Really for me, just havingthat, that person there,
having that hour, that was just for me.
I'd always leave likeI'd released a burden
and then I could reset
and I could get back on withwhatever disaster you're trying
to solve at that day. (laughs)That day, week, month.
- And Nick, you are alsovery young as a carer.
(16:52):
You're in your thirties.
How does being a carerimpact your social life?
- When I was sort of going through this,
I was getting counselling andI was going to support groups.
That, that was my life.
That was so much was,having these conversations
and getting support from people in similar
situations who had been through it.
And, I would obviously keep my friends up
to date when I'd saw them.
(17:13):
But, for me personally,I almost sort of said,
I'll give you the update butI just want us to be friends.
I want me to be 30 again (yeah)
I don't need tobe reliving it every time I
saw them, and I was justtrying to find other avenues
and other areas for me toget that emotional support.
- What top tips would yourecommend were put in place
(17:33):
to help people in your positionwho've got to take control
and and help somebody who's now diagnosed?
- Oh, so many. (laughter)
I think there's probably a few key ones.
I think always ask questions,
always be thinking ahead
and you're the expert inthe care of your loved one
(17:55):
or the person you're caring for.
And a lot of the time, from my experience,
you'll have someone come inand they'll do an assessment
that takes half an hour.
And that might not necessarilycapture some of the things
that, that you might want
or you might not understand what,
what services they can offer.
So, always asking thequestion about, you know,
what else, what else can we get?
What else can we get inthe home, to really sort
of tease out, they might notcapture some of the things
(18:17):
that have been discussed in
that little half an hour assessment.
The other big one is, again,different for everyone, but
try and keep a record of whoyou're talking to and
the dates (that's key)and the people that's...
- A dedicated book just for this.
- Yeah. And I call mymum's file the 'Bible'
and everything goes...
- We that's that's..
- You've got one too. (laughter)
(18:37):
- I've got one, high five. Yeah.
And that's what I call likeeverything goes, goes into that
because you just so quicklyget overwhelmed with the
the numbers you're calling,the people you're talking to
- And everybody changes as well.
You get a different personwho doesn't know the backstory
and you've got to, you'reconstantly reviewing
everything that's happened.
- How do you articulatewhat that function is
(19:00):
and what that role is whenyou're helping your mum
interact with the health system?
- I, I don't really knowhow I'd, I'd term it.
But, what I used to sort of sayto my mum, I was like,
"Mum, you just focus on living"
"And I'll sort out all theadministrative burden".
Obviously, communicated a lot during our
(19:20):
sessions with our specialist.
And they helped us maybeidentify future needs.
And you know, when thingswere getting more difficult at
home, there were just times I had
to have those conversations with my mum
and I was like, you know,this is about helping you
but it's also about helping me.
Because you know, what we're really trying
to do is keep you here athome as long as possible.
So, sometimes I had to sortof just almost ask her,
(19:42):
"Can you please accept morehelp" because it's going to
help me, and we cankeep in this situation.
- If you look back onthe whole experience now.
What have you learned about caring?
- That it's hard.
Every time I look back on it, that I go,
"Oh yeah, God, I forgot about that".
"That was silly", or thatwas, "I can't believe
that thing happened".
But I don't think there'sany, nothing necessarily
(20:03):
that, that I've learned from it.
Apart from one reflection that I always
do have when I read backthrough, through the report is
you grow up and you get into a career
and it's about, for me,you know, the promotion
and it's just, you'retrying to create a sense
of accomplishment ineverything you're doing.
And I found that whenI went to a caring role
(20:23):
and I'm trying to do all these things,
but you never had thatsense of accomplishment
because it's just the next thing, it's,
it's this never ending listof things that you have
to, to go through.
And to me, that was, atthe time quite, it was
so disheartening and it's something
whenever I look back on it,I just remember thinking,
you get to the thing and youalmost want someone to call you
and go, "Hey! Good job". "Yougot your package". You know.
- And also a little bitof that is that, you know,
(20:45):
that's usually the roleof your mum, you know,
that would be therefor you to go, "Hey mum",
"This is where I'm at".
And but instead, sadlythat's taken away from you
and that role as we wediscussed has been reversed now.
And so, you sort of, you missout on that a little bit.
- Definitely like, you know,when I, when I was working my,
my mum would be like,"How's the boss going"?
"How's the project going"? You know,
(21:06):
you would have those conversations
and then all of a suddenit's almost that part of life
where conditioned tosort of just evaporates
and you just get stuck in thisbig mess of things you need
to do with no end pointwith what is really,
diminishing returns at the end of the day.
Sadly with my mum, withher quite, quick decline.
(Music)
(21:31):
- So, some pretty big changesrecently for your mum
and I guess consequently for you.
What's happened, what's changed?
- So, my mum had Covida couple of months ago.
And that made her really quiteunwell as it did all of us.
She hadn't had Covid at all.
And, went to the GP, endedup going to emergency.
(21:51):
Everything was, was clear.
And then over the course ofabout three days,
following her recovering from Covid.
The decline was unbelievably rapid.
I mean multitudes, than the previous day.
The mobility, the paranoia, the confusion.
My mum can sleep througha storm, now she's
getting up at night asking,"What are we doing"?
(22:12):
"What's going on"? "Where am I"?One minute, you know,
I can't leave her because Igive her security.
The next minute, I mean,I'm enemy number one.
And then over the courseof three days we were sort
of waiting to talk to a specialist
or a GP about permanent care.
And had a chat to areally good family friend.
(22:33):
And she just said, "Look,this is an acute decline
Hos, you needed to go to hospital".
That's, that's what it is.
It was just so surprising
that I needed someone to tell me that.
It was like I wasn't going tomake that decision myself.
Luckily, I, a speech therapistwas there that day as well
and she just said, I can see how scared
and frightened you are likein your facial expressions.
It must be horrifying being inyour mind and body right now.
(22:55):
And, had a chat to mum
and she was happy to take an ambulance.
And now we are looking atplacing her in permanent care.
She was very adamant shenever wanted to go, into care.
And she was always, youknow, that was in the back
of her mind, "Just don't put me in a home.
Don't put me in a home".
But after discussing withthe specialist, my sister
(23:16):
and I just made the proactive decision
to just start lookingat places to get a feel
for, for what they are.
So, when the time comes we can have
that discussion with my mum.
And, thankfully or luckily, you know,
we had looked at a few places,
but, for me personally tosort of desensitize myself,
I actually volunteered
through the Aged CareVolunteer Visitors Scheme.
(23:38):
And you go into a nursinghome and or someone at at home
and you just visit them for an hour.
- That's fantastic.
That gave you a genuine insight as well.
- Yeah. And also, insightinto the homes in the area.
Getting people's opinionI think is important.
There's never going to bea right or wrong answer.
But I just find for me themore information I can get,
the more informed decision I, I can make.
(23:59):
- Now that the time has come for this.
How are you feelingabout your mum going into
permanent residential care?
- I feel, a large part ofme, wants to take her home
and try and care for her, at homejust a little bit longer.
Because she's currentlyhaving to transfer to respite
before we potentially get a bed.
And I have to keeptelling myself like, "No",
(24:20):
like "I can't provide that support".
But mum, my mum is also awareenough that she realises
that she does need thatround-the-clock care
and that's something thatcan't be provided at home.
She's obviously up, upset about it.
But, I'm trying to lookat the glass half full.
And I think that she will havea, a fuller life in a home
that is designed to, tostimulate and to keep...
(24:42):
- Support her, completely.
- Instead of her just beingat home and not being active
and me not being able togive her what she needs.
- What do you remembermost fondly about your mum?
- Isn't it strange? I knewthis question would come up.
And do you know what's really hard.
And I think it's probablythe hardest thing
to process, is the last 18 months.
(25:02):
It's probably the longest I've spent
with my mum since I was a child.
And that's so much allI can remember of her.
And I find it so hard tothink back to what she was before.
That question ofwhat, what my mum was like.
I get a lot of itthrough her, her friends.
And, you know, my, one of myreally good mates came over
and he was like, oh, yourmum was so quick-witted and,
(25:24):
and funny and that,that helps me remember.
That helps remind me of, of who she was
because I do just havethis real visceral feeling
of the person she isnow because that is what
I've lived for, forwhat feels like forever.
- I think obviously.
Well done Nick. You've looked
after him mum beautifullyby the sound of things.
(25:45):
- Thank you.
(Music)
- As Nick pointed out, he'sabout as digitally literate
as it gets, but if you're not an engineer
or a technology whiz, what do you do?
Kaele Stokes is the Executive Director
of Services, Advocacy andResearch at Dementia Australia.
She's worked with countlessfamilies trying to access care
(26:07):
and support, and she's workedwith the agencies that offer
that care and support.
So, she knows how toughit is for new carers.
- I think Nick's story reallydoes reflect the challenges
that lots of familycarers have when it comes
to supporting a personliving with dementia.
We've spoken to thousands ofcarers over the last few years
(26:30):
and the fundamental challengesthat they experience tend
to be the same, which is not knowing
what they should even be looking for.
Not knowing what services areout there that are available
for people that are living with dementia.
Not knowing whether services are general
or more specific to peopleliving with dementia.
We, we hear all these sorts of stories.
(26:50):
And, unfortunately we'vestill got a long way to go
before we have a really integrated system
that allows people tomove through healthcare,
disability, aged care ina, in a seamless way.
It's sort of the, the 'holy grail'
of service provision, butwe've got a long way to go.
- It, it strikes me though,
that the reason why someonemight have reached a point
(27:11):
of diagnosis, is that they'restruggling with things
and so, suddenly someonethat is finding it hard
to make decisions or hard to plan
or is having difficultyprocessing things in front
of them, is being presentedwith the biggest wave
of decisions and new information
that they might haveexperienced in some time.
(27:33):
Is there any way around that?
- You're absolutely right, Hamish.
We do tend to hear from people,
particularly whenthere's a point of crisis.
And a lot of the work
that Dementia Australiais doing, is trying to work
with people to pre-empt those well
or avoid those crises altogether.
So, having a much moreplanned conversation
around what's going to happen,the sorts of conversations
(27:56):
that Jim, you've been talkingabout in, in previous episodes
where, it's around understanding the
trajectory of, of dementia.
What sort of challenges might come up
but also knowing who totalk to at the times where
things do escalate or changein a, in a more sudden way.
Because we know that thatdoes happen as, as
part of a dementia trajectory.
(28:16):
It's not a a steady trajectory.
It's got spikes and,
and changes that can occur pretty quickly.
- That's so right.
I think it's really difficultwhen you come to terms with
somebody becoming a carer
or even to look at yourself as a carer.
Even Ty said on the wayhere today, you know,
he still doesn't considerhimself to be my carer.
(28:37):
And I said, "Well, you do care for me
and it's care and support".
So it's a 'Segway' in, isn't it? You know?
- It is. Yeah, it is.
And I think, you know,
it does take people a littlewhile to, to adjust to that.
And you know, that can alsobe reflected in the way that
people engage with each other as well.
So, there's that shift in dynamic
or shift in communication that
(28:59):
that can be really awkwardat the beginning and,
and challenging to, to havethat sort of conversation
where you're ultimatelyresponsible for somebody else.
- Not to be too boring about it,
but what's the shopping listof platforms and gateways
and services that you'regoing to hear about
if you're going through this, now
and you're maybe at thestart of the journey?
- Probably the firstport of call is talking
(29:21):
to your healthcare professional.
So your GP, around the changesthat you're experiencing.
They may or may notrefer you to a specialist
and that could be aneurologist, a geriatrician,
a psychogeriatrician, somekind of specialist that has
dementia in their, intheir specialisation.
And, that can be part ofa, a hospital system.
(29:44):
It might be a private practise.
So, getting a formal diagnosis through,
through those means canbe really important.
And then often we do hear
that people can live pretty well at home
before they need anyformal support services.
So, it might be the accessingpost diagnostic support
programmes like the ones
that Dementia Australia has,can be useful for, for planning
(30:06):
and thinking about the future.
But often there is a, a, youknow, sustained period of time
where people can live independently
and continue to, to do thethings that they've been doing.
Where care needs do start tochange, depending on the age
of the person, and I hatethe phrase "care recipient",
(laughs)
but depending on the ageof the person, it might be
(30:26):
that someone has to apply for supports
through the NationalDisability Insurance Scheme.
So there is a, an assessmentprocess that they go through
to access those supports.
If they're over the age of 65,then they would be directed
to My Aged Care, which is the,
the federal government platformfor all aged care services,
(30:48):
whether they're delivered in the home
or in a residential care setting.
All of those services, irrespective
of whether it's the NationalDisability Insurance Scheme
or My Aged Care, requirean assessment from,
from independent staff thatwill look at the, the care needs
of, of the individual and then,you know, plan from there.
- So when we went throughthis, I was told, you need
(31:09):
to get your codes.
You're sort of smirking at
that question, what does that mean?
- Unfortunately people who workin the system tend to forget
that the system iscompletely incomprehensible
to anybody not working in the system.
So, understanding thedifferent components of, of
an aged care assessment
and under understanding,you know, the results
(31:31):
and how that translates into care.
Should be supported by theaged care system or the,
or the disability system tohelp people understand it.
But it can be really complicated
and people often dospeak another language.
So, that can be really challenging
and that's where organisationslike Dementia Australia can
(31:52):
be helpful because, whilst we are
not directly involved in doing assessments
through the age caresystem, et cetera, we do
have the ability to support people to go
through the assessment process
and help them understand
what it actually meansin 'lay people's' terms.
- So what sort of progressdo you think is happening
(32:13):
to make those servicesmore cohesive for people?
Can you see steps of progression?
- I think there is steps
and I, I have been around thesector for longer than I care
to think about, and it's slow.
And you know, often peopletalk to me about the fact
that you know, they've beentrying to see change for a,
(32:34):
for a long time and theirtime's running out right.
And they want to seechange and it really slow because
we're talking about legislative systems
that have to talk to each other.
The Department of Health andAged Care does have a reform
branch that's looking at all
of the different agedcare reforms, including
how legislation "harmonizes",
I think is the word theyyou use with other parts
(32:56):
of the system, includinghealthcare, hospitals, disability.
But, you know, it's slow going.
- Just from a personal pointfrom my experience.
It is so lonely, you're so isolated
once you get thatdiagnosis because you just
don't know where to begin.
I think what Dementia Australia provides,
I think you are in it, soyou forget how amazing it is.
(33:18):
And from what I've seen, like it is
just such a fantastic crutchfor people to lean on.
Even to be advised to come and be
soothed, by our podcast, whichwhich gives you so many
tidbits and so much info.
- Yeah.- Like those things are so invaluable
to anybody who's moving into that
care (Yeah) situation.
(33:39):
You know, it feels very lonely.
- Yeah. And Nick andother carers talked about
you know, just the amount of information.
(he was amazing) they try to absorb in,
in understanding their caringrole and what they need to do.
And he was fortunate
that his geriatrician waswell informed about the system
and able to provide some initial guidance.
But lots of people don'tnecessarily have that
or they have conversationswhere it's like,
(34:00):
well you've got a diagnosisof dementia, you know,
we'll see you, you whenyou, when you need formal
care and good luck.- Exactly.
- And there's somuch more that can be done in
that, you know, in thatso good intervening period
- On that, when I get approached
and asked questions about it,I'm always encouraging people
to, to sort of get help andguidance and assistance early.
(34:22):
But a lot of the feedbackis, well, we'll cross
that bridge when we come to it.
There's a kind of feeling that
unless we're right in theworst of it, we're just kind
of hands off for now.
Is there a time that'sright to start seeking some
of this assistance?
- Having conversationsas early as possible,
even if they are uncomfortable
(34:44):
and a bit, you know,'squirmy', is important
because it can take theheat off at times where
there are decisions to be made.
And you know, family carerswill often talk about
their reassurance in havingconversations earlier
because even if care needs change
and a person with dementia can't be part
(35:04):
of the conversation inthe way that they used to,
the family members feel thatthey've got a good sense of
what that person wanted
because they've spoken tothem about it as opposed
to guessing and thinking, oh,I hope that's what you know,
they would've wanted if theywere able to to talk about it.
- Kaele, thank you very much.- Thank you. That's
- Such great advice. Thanks for coming in.
- Thank you.
(35:25):
(Music)
(Music)
- If you do want some reallynitty gritty, practical advice,
make sure you listen to ourCompanion Helpline episode.
- You'll hear from Kristen.
She's one of the advisorson Dementia Australia's free
helpline, and thehelpline's available 24/7
(35:48):
So if you need somebody to talk to,
- You can find the bonushelpline episode wherever you
listen to podcasts or on theDementia Australia website.
You can also call the helplinedirectly for tips and advice.
It's 1800 100 500.
- Hold the Moment is a podcastfrom Dementia Australia
produced by Deadset Studios.
(36:09):
You can find more episodes
and resources on DementiaAustralia's website:
dementia.org.au.
The show is hosted by me, Jim Rogers
- And by me Hamish McDonald.
The executive producers areKellie Riordan and Gia Moylan.
The Producers are Madeleine Hawcroft
and Liam Riordan.
Production Manager is Ann Chesterman.
(36:30):
Sound Design by Ryan Pemberton.
A special thanks to the wholeteam at Dementia Australia
and to everyone who sharedtheir stories on this podcast.
(Music)
(Music)
(Music)
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