0:00

ABC Listen, podcasts,

0:02

radio, news, music

0:05

and more. Hello

0:13

from NAMM in Melbourne. I'm

0:15

Jacinta Parsons and this is

0:17

Life Matters. Do you

0:19

want to live independently as you age?

0:23

It's a question that we all need to

0:25

think about regardless of our current age and

0:27

stage because while there are

0:29

things that will pop up that we

0:31

can't control, there are things we can

0:34

do to avoid becoming pre-frail. That's

0:36

a term I've just learnt. So I

0:38

look at ageing well at home, that's

0:40

coming up. We

0:47

know from research that about 80%

0:50

of us would prefer to stay living at

0:52

home as we age. One

0:54

thing that might help us is that the federal

0:57

government has provided an additional 24,000 home

1:00

care packages in the budget. These

1:02

are supports for people who've been assessed

1:04

as needing help at home. But

1:07

how far will this go toward

1:09

addressing current needs? What are

1:11

the barriers to independent living and can

1:13

we prepare ourselves to live at home

1:15

for as long as possible? We'll

1:17

be hearing from three people with

1:20

different perspectives but of course we

1:22

want to hear from you. If

1:24

you or someone you care for lives at home as

1:26

an older person, what have you found helps with

1:29

independent living and what are

1:31

some of the barriers you've encountered? To

1:34

help us with the conversation today,

1:36

we're joined by Professor Sue Gordon,

1:38

a research director at ARIA, Aged

1:41

Care Research Industry Innovation

1:43

Australia. Welcome Sue. Thank

1:46

you. Bobbi Redman is the

1:48

chair of the Dementia Australia

1:50

Dementia Advisory Committee and she

1:53

lives independently with dementia. Welcome Bobbi.

1:56

Thank you. And Ash Ekanayaka

1:58

is a carer for... her

2:00

mother who has dementia as

2:02

well and she has a background in

2:05

working in the corporate sector. Thanks for

2:07

joining us Darsh. Thank you.

2:09

Sue, I want to kick off with you

2:11

on that announcement in the federal budget of 24,000 home care

2:15

packages. What kind of

2:17

an increase is that going to have in

2:19

the package availability? It

2:22

will certainly help to address the

2:24

large number of people that are waiting for packages.

2:27

So it is a very welcome

2:29

increase in the number of packages. It's

2:31

expected that it will reduce wait times by

2:33

about six months but

2:35

it isn't a magic wand and I

2:37

guess it has to be considered in

2:39

the context of all of the other

2:41

reforms that are coming particularly based on

2:43

those outcomes of the aged care Royal

2:45

Commission that is still rolling out. I

2:48

read actually one estimate. I think

2:50

it was late last year December.

2:52

There were 50,000 Australians waiting for

2:54

a home care package and

2:57

their assessment level of need. Is

3:00

this increase of the 24,000 going

3:02

to be enough for some people still or

3:04

will there be lots still left waiting for

3:06

long periods of time? Well

3:08

they are expecting, they're predicting that it

3:10

will reduce the wait times and

3:13

when people do come in for a package they

3:15

actually are prioritised. So you absolutely

3:18

hope that people who most need it are

3:20

getting the help they need but it's not a

3:22

magic wand and we

3:24

still have need. One of

3:26

the things that is compounding the

3:28

number that we need is that people are not

3:30

exiting packages as quickly as

3:33

they have in the past. So people

3:35

are staying at home longer. So there's

3:37

almost a level of success which is

3:39

compounding the increased need for packages to

3:41

stay at home. Bobbie

3:45

I'd love to hear your perspective

3:47

as well. You received a diagnosis

3:49

of frontotemporal dementia almost 10

3:51

years ago now and

3:53

you live independently at home. What's

3:56

been your reaction to the news that more

3:58

home care packages will be made available? Look,

4:02

we're always really happy when we hear

4:04

that there's going to be more packages

4:06

available. But

4:09

24,000 is great, it's better than

4:12

nothing, but there are

4:14

so many more needed. And

4:16

also, you know, there is a waiting

4:18

list, but part of the issue I

4:20

think is, you know, people can't get

4:22

onto the waiting list. People, particularly people

4:24

with dementia, are often not recognised

4:27

for their needs. We're

4:30

going to get into a bit of that

4:32

complexity within this discussion as well. And

4:34

Bobbie, there are texts already coming through describing

4:37

some of the challenges. But

4:40

Darsh, I want to hear from you as

4:42

well. You cared for your mum at home for

4:44

as long as you could, but she's recently

4:46

moved into an aged care facility. While

4:49

you were making those decisions, was

4:51

it ever suggested to you that you could

4:53

get support at home? Actually,

4:57

no. I couldn't get a home care

4:59

package. There was a massive

5:01

waiting list, plus she

5:03

was categorised as

5:06

advanced care person,

5:09

so she had to go to nursing home. So

5:12

I couldn't get a home care package.

5:15

And so what sort of wait times

5:17

were you expected to have when you

5:20

first looked into it? Actually

5:23

eight to 12 months, and I couldn't wait

5:26

that long. No, I don't think that's

5:28

practical to any person. That's

5:30

such a tricky situation that

5:32

you put in. So I'd like to

5:34

get to a bit of the detail about

5:37

some of the changes around aged

5:39

care regulation. There's also been changes

5:42

to how people are being assessed.

5:45

How is that going to influence the type

5:47

of access people have to support at home?

5:50

So the government next

5:53

year, it has actually been delayed,

5:55

will roll out a new home

5:57

support programmer and a new way

5:59

or something. support at home program

6:01

that will get

6:06

people to the right services because

6:10

there have been inconsistencies in what people have

6:12

been delivered in the past. It

6:14

has been delayed but that is coming. The

6:18

Age Care Act of course is

6:20

another important piece that

6:22

it is being revised and that will come next

6:24

year as well. The thing that

6:27

hasn't been discussed yet nationally

6:30

is the Age Care Task Force and

6:32

this was a group who have put

6:35

to the government new ideas,

6:37

new ways of actually delivering

6:40

healthcare and costing healthcare and

6:43

we are waiting for that

6:46

to be released publicly. Lots

6:48

of text messages coming through with this

6:52

sort of insight into that access. I

6:54

have a little bit of a backie

6:56

saying here, my mum is 91, lives

6:58

solo at home, she has a package,

7:00

it is a nightmare. There is no

7:03

way she would be thriving as she does without

7:05

me to advocate. It is like a full time

7:07

job. There is so much smoke and mirrors about

7:10

these packages. The management of them is

7:12

a murky business indeed. Is that

7:15

being addressed at all with what

7:17

we are looking forward to Sue? I

7:20

believe that it is. I think that

7:22

is unfortunately a common

7:25

description of finding

7:27

your way through getting

7:29

to your home care package.

7:32

I think the government is aware of this

7:34

and I believe that they are trying to move

7:36

towards changing it. We

7:39

do have such increasing need

7:42

and complexity of need and it

7:44

is happening quickly. How

7:48

you actually support that when

7:50

we do have a really thin

7:53

workforce to deliver it,

7:55

this is one of the problems and also managing the

7:57

rest of the world. risk

8:00

of looking after people in their own situation.

8:07

I guess the preparation around this decision

8:09

is best done

8:12

well in advance of the decision perhaps

8:14

needing to be made as to how

8:16

the management might happen. What is your

8:18

advice about when people should be starting

8:20

to speak to health professionals about the

8:22

home care package. I

8:24

think start the conversation early. It

8:27

takes time to be assessed,

8:29

there are weights. I

8:33

think sometimes people are very stoic and

8:35

they don't want to ask for help but you

8:37

really do need to ask for help when you

8:39

start to need it and not wait until you

8:41

do need a level three

8:44

package. Try and start

8:46

with that earlier package so that you're

8:48

supported all the way on that journey

8:51

of aging. I think it's important to

8:53

start early. And obviously be

8:56

in that system so that that moment

8:58

of entry is not at the most

9:00

complex time. So, Gee,

9:02

I'd love to hear about your experience

9:04

of home care. What kind of support

9:06

are you able to get? Right.

9:09

Well, I'm actually very lucky. I'm on a

9:12

level two package and

9:15

it's sufficient for my needs because

9:17

I use a lot of technology

9:19

as a backup as well as

9:22

having a person come in to

9:24

care for me. So

9:26

I just have somebody coming in once

9:28

a week and

9:31

she kind of comes

9:33

in and does a bit of tidying up

9:35

cleaning for me. She will

9:37

take me to any medical appointments

9:40

or other appointments that I have. I

9:42

have a limited license so I can't

9:44

drive fast. So when

9:46

I need to go anywhere, she'll,

9:48

my carer will take me. I

9:51

have a regular carer. So that's really important

9:53

for me and for people with dementia. I

9:56

often hear people say that they don't get

9:59

a regular carer. carer and for

10:01

people with dementia that have

10:04

trouble holding on to people and

10:07

recognizing people at the most of times and

10:09

not having we don't want strangers coming and going

10:11

in a house. But

10:14

I use my technology comes

10:16

through my package so that also

10:18

provides me with a lot of

10:20

lot of care and I'm able

10:22

to keep myself going. It covers

10:25

me to go to my

10:27

physiotherapist on a fortnightly basis

10:29

because I'm having trouble walking

10:31

now as well as

10:33

the cognitive issues. So generally

10:36

I'm okay with my

10:38

package but I think I'm okay

10:40

because I'm someone I have

10:42

an allied health background I was a

10:44

psychologist and I

10:47

was very clear on what

10:49

I would need in order to be

10:51

able to maintain my independence. I

10:54

live alone and it's important for

10:56

me to be independent. It's

10:59

interesting to hear Bobbie that there seems

11:01

like almost you need a degree to

11:03

be able to navigate the system as

11:06

well as you have. What's

11:09

your advice? We heard from Sue about her

11:11

advice about how to get in and getting

11:13

in soon. What is the

11:15

best way do you think

11:17

for people to get their

11:19

home care package processes started?

11:21

I think that's the hardest part. It

11:23

was the hardest part for me and I

11:28

listen to people all the time who say

11:30

that they've been turned down on packages or

11:33

they've been put on a never-ending waiting list.

11:35

I think I'm

11:38

glad to hear that the assessment process

11:40

is changing because it's very

11:43

much geared up to physical needs.

11:46

So if you tick all the boxes and you

11:48

can get around at that stage when they're assessing

11:50

you then if

11:52

you're living with dementia and there's all sorts of

11:54

cognitive issues that are getting in the way of

11:57

you surviving at home alone

12:00

The questions aren't the right questions

12:03

and people just

12:06

don't recognize that they can actually have

12:08

a say as well as just answer

12:10

the questions. So to be

12:12

able to say to the assessor, yes, look,

12:14

I can do those things, but these

12:17

are the things that are a problem

12:19

for me that I can't do and

12:21

are a challenge. And that's what

12:23

happened to me. I was able to describe it

12:26

and luckily the assessor listened to me

12:28

and took it all in and

12:31

recognized that my needs were quite different

12:33

to the needs that she was actually

12:36

looking at with her list of questions.

12:39

What is such important insight,

12:41

Bobbie, into the questions not

12:43

being adequate or

12:46

appropriate? So in

12:48

this rejigging of the assessment, do you

12:50

know whether those questions will be more

12:53

encompassing of the wide range of experiences

12:55

that people are having? Yes,

12:58

that's the intent to

13:00

actually make it a more comprehensive and

13:02

consistent assessment. So that

13:04

if someone's assessed in WA or they're

13:06

assessed in TASI, they're going to end

13:08

up with similar outcomes

13:12

for their needs. It

13:14

hasn't been always consistent in the past.

13:17

So many texts coming through on this, which

13:20

is not surprising in obviously

13:22

how important this issue is

13:25

to so many of us.

13:27

The text line

13:29

0418226576, this from Nan saying, �When

13:31

my mother's dementia meant she couldn't

13:33

reliably take her meds three times

13:35

a day. Her aged care

13:37

level was too low to have three visits

13:40

a day, even brief visits. She

13:42

was kept on a lower level and as a result

13:44

ended up in aged care. I don't know how frail

13:46

you would have to be to get

13:48

the higher levels of care.� And this

13:50

text as well coming

13:53

through saying, �I live at home with

13:55

my grandmother and previously with my grandfather

13:57

who had dementia as well.� speak

14:00

from my perspective and can't possibly understand

14:02

the feelings associated with the loss of

14:04

independence and the like. However, the

14:06

one piece of advice that I would impress upon

14:09

people who are of the age where

14:11

they may need to help is please do not

14:13

wait to ask. Get on the

14:15

list for an aged care package as soon as

14:17

it, before you think you

14:19

need it because things can change on a

14:21

dime. Get on that list and

14:24

get information before it becomes too

14:26

late and too difficult. And

14:28

Dash, I can imagine that advice would

14:30

have been extraordinarily helpful for you

14:33

and your mum had you been

14:35

aware of that much sooner. Oh,

14:38

totally, Jason. I had no

14:41

clue until I actually got

14:43

my diagnosis so I had to seek

14:46

help. I

14:48

can't imagine what I have

14:50

gone through but we

14:54

need to be quick. Everyone needs to

14:56

be aware of this condition and

14:58

get in as soon as you

15:00

can. Get a register

15:03

with ACAD, do your assessments and

15:05

get your nitty-gritty sorted right now.

15:07

I like that. The nitty-gritty is getting sorted.

15:10

Yes, Dash. Because for

15:12

you as well, your situation was made

15:14

even more complex than it already is

15:16

by your own diagnosis with

15:18

health. That made it really tricky. Yes,

15:21

Jason. Sadly, I got

15:23

diagnosed with MS so I was declining

15:25

while I was caring for mum and

15:27

I had no help. I had zero

15:29

help. And

15:32

it wasn't easy. I can see mum

15:34

every week declining and basic

15:36

things like drinking

15:38

water, pulling things. I

15:41

had to make the whole home dementia-friendly

15:43

for the benefit of her plus

15:45

for my own family. There's

15:48

a lot we have to do being

15:51

a carer. It's

15:53

a broad topic. And

15:56

this is a huge part of it. I

15:58

want to ask all of you about... caring

16:00

and the workforce which I know Sue you've

16:02

done a lot of thinking

16:04

and writing about. I'm just into Parsons,

16:07

this is Life Matters on ABCRN and

16:09

we're talking about how to age at

16:11

home well. We're speaking with

16:13

Professor Sue Gordon, Research Director

16:15

at ARIA, Aged Care Research,

16:17

Industry Innovation Australia. Bobby Redman

16:19

also joins us Chair of

16:21

Dementia Australia and the Dementia

16:23

Advisory Committee and Dash Ekaniyaka

16:26

who cares for her mother

16:28

who also has dementia but

16:30

has a background working in the corporate

16:32

sector. Dash I'd be interested to see

16:35

when it comes to that workforce either

16:37

helping people in the home or in

16:39

aged care facilities how much understanding is

16:41

there did you see or you

16:43

experiencing yourself now of the conditions

16:45

of aging and how much understanding

16:49

was there of dementia? I'm

16:52

going to be blunt on this Chair Center. I

16:55

live in Australia I had no clue

16:57

what dementia was and I actually went

17:00

through depression knowing what was happening to

17:02

my mom. So now

17:04

I'm a carer I have an amazing

17:07

understanding of what

17:09

to do and the things that

17:11

they go through daily but

17:14

the carers that I have taken

17:16

in and also sadly certain carers

17:18

in the aged care facilities they

17:20

are new to the country they

17:23

have no clue understanding of dementia.

17:25

My advice as a carer to

17:28

sector please get in and get some

17:30

sort of certification that they

17:33

are registered they can't

17:35

handle dementia behaviors. Each

17:38

person is different we need

17:40

to implement this and get

17:42

them to do certain certification cause

17:45

and that needs to be compulsory

17:48

otherwise don't handle

17:50

dementia residents. Such

17:53

important insight. Sue you've

17:56

also argued about the need to Urgent

17:58

upskilling of. A workforce to

18:01

support people to live at home. Workers

18:03

need to be trained in so so

18:05

cz cool. Really a woman and and

18:07

as we mentioned to spin diminished supports

18:09

how do we make this happen and

18:12

how do we and so workers are

18:14

gonna be paid well for their increased.

18:16

Expertise. Of

18:19

it's great that the say what commission

18:21

has some I say awarded I'd coworkers

18:23

a in a greater salaries to throw.

18:25

Alliance I spend so badly night at

18:27

and and that's. Really contributor to pay

18:30

for leaving. The ice care industry

18:32

weight during night. addicts are tiny and

18:34

I think when it said thinking differently

18:36

that the training because the profile of

18:39

playfulness that of wanting to stay at

18:41

home is changing. The complexity of is

18:43

quite. Different to what it was. Ten Nice a

18:45

guy. On the crime or

18:47

beta days I'm up in a of

18:50

of rising and so our workforce has

18:52

to be trying to procreate lay and

18:54

if we do want to have purple

18:57

sang at Heinz we have to recognize

18:59

that complexity and prepare the workforce adequately.

19:01

I'm and it does have to the

19:03

it's it's beyond I'm hoping way to

19:06

personal charities or is that the first

19:08

soccer social Looking at all aspects of

19:10

a person's life and. For

19:12

this a great deal of work to

19:15

be done. He and and obviously that

19:17

expertise is crucial. But this tix from

19:19

Margaret is well, is concerning. She says

19:22

please ask about sourcing of packages. A

19:24

year ago I was told there was

19:26

no wants to do in homework like

19:29

vacuuming and garden maintenance. That was the

19:31

end of it. Are you hearing that

19:33

as well that the workforce, even in

19:35

those more basic tasks, is inadequate? Am

19:39

I think that this comes back

19:41

Say that the level of package

19:43

that you are assessed as needing

19:45

and see the accessibility to an

19:47

end there are things that are

19:49

not covered by packages that people

19:51

might want to. It's not that

19:53

she had a package and you

19:55

can chase have their a godless

19:57

of out what will be actually

19:59

paid for. Right right,

20:01

Package and. And that

20:03

certainly changes, have. Been. Or is

20:05

the level of package cosa. Know

20:08

the takes reiterating all the challenges that

20:10

we have already. Food: This is not

20:12

enough funding this in the system Lawsuit

20:14

to be Thirty hours to get through

20:17

to the referral work is two hours

20:19

to finally go through the referral from

20:21

my dad with the intake with her

20:23

and then she said he'll be eligible

20:25

for eighteen hours of in one sport.

20:27

That fantastic I said thinking that was

20:30

per week. know it was eighteen hours

20:32

in social Saturday down as introducing a

20:34

new person into Dad time. Going through.

20:36

His routines and ironing out the

20:38

problems wasn't worth. Eighteen Hours Bobby,

20:41

You mention that as well that

20:43

that need for you know that

20:45

consistency. Having someone that you know

20:48

well I'm coming into your home

20:50

but you also employed let's say

20:52

it Iii Bobby to help in

20:55

the are you getting around your

20:57

home safely and and will tell

20:59

us what you. Use. Law

21:02

are useless things up fucking just of

21:05

that to to wire needed to to

21:07

use it. I recognize that looks at

21:09

it wasn't going to provide day to

21:12

day care and era people coming in

21:14

three times a day to to remind

21:16

me to take my medication. So am

21:19

I kind of. Asked

21:21

around I talked to people I

21:23

had connections. Luckily I'm because I

21:25

work with a lot of researchers

21:27

who worked with that knowledge. He

21:29

I'm for advice on what I

21:31

could do. I'm so I have

21:33

a reminder system that has been

21:35

set up that is that's my

21:37

care of my my Sony actually

21:39

speaks to made you know honest

21:41

five minute basis. I think really

21:43

I'm telling me what I'm supposed

21:45

to be doing next. I'm I'm

21:48

not able to work through my

21:50

day myself independently. Now so I

21:52

need reminders from the time away

21:54

top. I'm. To what I need

21:56

to do, Go to the bathroom, have breakfast,

21:58

have a shower, or. The shouldn't need

22:01

to be done. My phone reminds

22:03

me am I has a home

22:05

google that I'm set for too

22:07

early to remind be tests, have

22:10

a drink of water I'm and

22:12

go to the bathroom so that

22:14

reminded comes out all of the

22:16

time for me separate to my

22:18

daily ones that sometimes times need

22:21

to be changed around and luckily

22:23

I'm still able to do that.

22:25

Observe a monitoring system that's. It's

22:28

sir a sensor that. Measures might miss

22:31

of of movement around the house

22:33

and hopefully that's going to help

22:35

to help people to recognize when

22:37

my patterns are changing and that

22:40

is may be problems with my.

22:43

Innards of that that I'm to tear

22:45

a signal that something's changed in my

22:47

life and maybe six or of I

22:49

may just be deteriorating as as is

22:52

expected twists living with dementia so that

22:54

they're the ones I use the most

22:56

part of got all sorts of bits

22:58

and pieces and us. Again Avast is

23:01

alone to to trial different things that.

23:04

People have the hood as I

23:06

used at all tests these things

23:08

out because I'm not scared of

23:10

technology. Isn't that wonderful? A In

23:12

some ways Bobby though you would

23:14

be I guess in our an

23:16

outlier and that early adoption in

23:19

our on skate of technology I

23:21

wanted to read i am it.

23:23

It's a wonderful asset to have,

23:25

but I'm sure it's availability is

23:27

also limited soon as you found

23:29

that. We're technology is. This is

23:32

possibly a really interesting solution.

23:34

Thought that we're going to

23:36

also need that human. Workforce

23:38

to ensure that that technology can

23:40

be used well. Yeah. absolutely

23:42

and i do the amount of technology

23:45

in wonderful his to he half of

23:47

his using it's a because there is

23:49

so much technology available it's it's it's

23:52

he died stay or it's radiates that

23:54

the a takeover these a slow and

23:56

i think that's partly because the workforce

23:58

or not as

24:01

familiar with it. I think some of the workforce

24:03

is scared of it just as, you know, older

24:05

Australians are scared of it. So I think we

24:07

do have to get a little bit more

24:10

adventurous in how we use it because it

24:12

really can help. I want to

24:14

get a final word from all of you

24:16

before we leave you today because you've stripped

24:18

such a cord with our audience.

24:21

Darsh, I might kick off with you and just

24:24

again I think reiterating that importance

24:26

especially you've mentioned that cultural barrier

24:28

as well that exists

24:30

around those conversations that we need

24:33

to have early and probably often

24:35

about how we wish to age. Yes

24:39

Jacinta, I'll be quick

24:41

on this. When it comes to cultural

24:43

backgrounds and their diagonals dementia, they

24:45

lose their second language

24:47

which is English. So this is another hurdle

24:50

that we all have to go through

24:52

and it absolutely makes

24:54

you, it will drain you so much.

24:56

How are we going to help them?

24:58

So to end it,

25:00

I just want to bring every

25:03

single person who's struggling out there.

25:05

Right now there's so many carers

25:07

suffering, crying, going through grief. Let's

25:10

help the families. Let's get these

25:13

home packages sorted and then making

25:15

sure that it is being provided the right

25:18

way to the right person directly.

25:20

I think

25:22

we need to get this through some

25:24

providers. I haven't got help from

25:27

them the right way. So

25:30

how are we going to tackle this?

25:32

How are we going to get this

25:34

out? Let the government handle totally? That's

25:36

where I'm coming from. I think there's a big

25:38

topic on this. We need help.

25:41

Carers need help. We don't have

25:43

public holidays. It's such

25:45

an important point and hearing you

25:48

speaking about this Darsh, we also

25:50

send out support and love to

25:52

you going through this at the moment. Bobbie,

25:54

what's your advice when people say, I want to live at

25:56

home for as long as I can? Okay.

26:00

work out what you need to keep you independent,

26:02

to keep you living at home. If you

26:04

have dementia and

26:07

you're not able to make these decisions that

26:09

are sort of at the stage, then make

26:11

sure you've got a carer that's advocating for

26:14

you. But we need to speak up and

26:16

we need not to be afraid to ask

26:18

for what we need. Bobbie,

26:20

you've got fan mail, this one. What

26:23

an absolute inspiration you are, the way

26:25

that you describe your inevitable deterioration with

26:27

such acceptance and grace and

26:29

your use of CleverTech to keep your

26:31

independence as long as you can. You

26:33

are an inspiration. Sue, from

26:36

you as well, just a really quick

26:38

message for us in terms of how

26:40

we can take this new 24,000 home

26:43

care packages but start to use it to our

26:45

advantage. Yes, I agree with

26:47

everything that Darsh and Bobbie have said.

26:50

But act early. Ask for help when you

26:52

need it. Don't be stoic about it. And

26:56

plan. Have those conversations with your

26:58

family as well. Really important conversations

27:00

about what you actually want as

27:02

you age and what a good

27:05

aging is for you.

27:07

Really important conversations to have. Thank

27:10

you so much to the three of you for joining

27:12

us and giving us both that really incredible

27:15

insight through lived experience and

27:17

through your professional engagement. Thank you

27:19

to Sue Gordon, Research Director at

27:21

ARIA Aged Care Research Industry Innovation

27:24

Australia. So many words, Sue, but

27:26

I got through them. Thank you.

27:28

Bobbie Redmond is the Chair of the

27:30

Dementia Australia Dementia Advisory Committee and she

27:32

lives independently at home with

27:34

dementia. Wonderful to have you. And Darsh Ekanayaka

27:37

is a carer for her mother who

27:39

has dementia. Again, if this story has

27:41

prompted any questions or concerns, please call

27:43

the National Dementia Helpline on 1800 100

27:45

500 or you can visit dementia.org.au.

27:51

Coming up next,

27:53

kids with chronic illness when they're

27:55

not a 20 minute drive away

27:57

from a hospital. diagnosed

28:00

with Crohn's disease which is an irritable

28:02

bowel disease when I was in my

28:04

20s. And being

28:06

20 in the prime of my young

28:08

adult life made it really

28:11

tough. I found coming to terms

28:13

with the chronic illness and its

28:15

management was confronting physically and it

28:17

was really challenging psychologically. But

28:20

that was me living in a metro

28:22

city with all the supports around. What

28:25

happens when you're a young child dealing with

28:27

a chronic illness and on top of that

28:30

you're living in a rural or regional

28:32

area. How are we

28:34

supporting our kids to manage life altering

28:37

chronic disease with a lack of specialist

28:39

care in these areas and how tough

28:41

is it to get a diagnosis? Joining

28:44

me are two people who not

28:46

know a lot about illness in

28:48

young people. Professor Ed

28:50

Giles is a pediatric gastroenterologist

28:52

at Monash Children's Hospital. Welcome

28:54

Ed. Thank

28:57

you. Ayana has

28:59

experienced the challenges of managing

29:01

IBD throughout childhood in Long

29:03

Beach, Queensland. I've fist pumped

29:06

you Ayana. Welcome to the

29:08

show. Hi. Thanks so

29:10

much for having me. I'd love to hear

29:12

from your lived experience first. How old were

29:14

you when you and your family noticed something

29:16

with your health wasn't right? So

29:20

I was 15 years old at the time.

29:22

It was about a month before my 16th birthday.

29:25

I was in grade 11 of high school at

29:27

the time and I was dealing with a lot

29:29

of stress from the transition into senior year of

29:31

schooling. And

29:33

so the symptoms started really small

29:36

in the beginning, really subtle like little

29:38

mouth ulcers here and there. But

29:40

within a few weeks they kind of escalated quite a

29:42

bit to the point where I had a lot of

29:44

pain and that's when we really knew something was wrong.

29:48

So from that moment and when you're

29:50

in a really particular time of your

29:53

life, how long did it take

29:55

you to get a diagnosis growing up in

29:57

Long Beach? Yeah. me,

30:00

it was actually within a few weeks.

30:03

With my symptoms popping up, we were

30:05

in and out of the GP for

30:07

a little bit trying to figure out what was going on.

30:09

And kind of the

30:11

week where my symptoms hit their peak

30:14

and my pain was at its worst,

30:16

there happened to be a gastroenterologist flying

30:18

into town. So every few months we

30:20

had specialists fly into town to do

30:23

procedures and to see patients. And

30:25

it just so happened that this week there was

30:27

a gastroenterologist coming into town to

30:29

do some colonoscopies. So my GP managed to tack

30:31

me on to the start of his list and

30:34

I got a colonoscopy done where

30:38

he basically said it was my bowels are so

30:40

inflamed that they were the worst that he had

30:42

actually seen in his 40 something

30:44

years of practicing. Oh my goodness. How

30:46

lucky that you had that situation because

30:48

I was listening to you thinking gosh

30:50

that's a really fast turnaround

30:53

for diagnosis regardless of where

30:55

you are. But that sounded like

30:57

a little bit of incredible

30:59

synergy. Associate Professor Ed Giles, is

31:01

that common that we will

31:03

see that sort of turnaround of

31:06

diagnosis so effectively especially for those

31:08

living in regional and rural areas?

31:10

Unfortunately not. There's often a really long

31:12

delay in diagnosis particularly for young people

31:15

with Crohn's disease even in metro areas

31:17

but particularly for those who find it

31:19

harder to access those services. And what

31:21

we discovered when we did a sort

31:24

of national visit

31:26

of the quality of care was

31:28

really the trauma that that delay

31:30

can often impose on young

31:32

people. It really makes it difficult for

31:34

them to then have faith in the

31:36

healthcare system going forward. That's a really

31:38

interesting point because embedding kind of concepts

31:40

of how your healthcare works for you

31:43

or doesn't at such an early age

31:45

can have life impact. Yeah

31:47

absolutely and I think unfortunately a lot of young

31:50

people are told things like you know kids can't

31:52

get Crohn's disease or you know it's just

31:55

stress and all of those things and

31:57

clearly young people as we've heard are facing lots of

31:59

problems. of challenge at that point in their life. But

32:02

then to have a delayed diagnosis of

32:04

a very serious and unfortunately incurable condition

32:07

really makes that whole process much

32:09

worse. Why is, because

32:11

we've got great professionals out

32:14

in our remote and regional areas,

32:16

why does living in those spaces

32:18

make that diagnosis delay more extensive?

32:22

Well I think we know that

32:24

access to services generally in the regions is

32:26

challenging and I think when it comes

32:28

to conditions that are not rare

32:30

but they're not common, it's very difficult for general

32:34

practitioners in particular to do that. Specialists

32:36

as we've heard aren't often there, they

32:38

fly in, they fly out and

32:41

you can get lucky clearly. I know. But

32:44

I think many young people and older people

32:46

as well don't get so lucky. So

32:48

it can be really difficult to access

32:50

these services particularly through sort of bulk

32:52

billing and Medicare access

32:55

can make it particularly challenging just the way

32:57

the system is set up unfortunately. Well it's

32:59

a great story about your diagnosis Ayana

33:01

but what about receiving the

33:03

care that you need while you were living remotely?

33:07

Yeah, so I was really lucky after

33:09

the first specialist, he

33:12

found everything, the inflammation with my

33:14

bowels. I was then flown to Brisbane

33:17

where I was seen by another specialist

33:19

who was actually originally from the Longreach

33:21

region. So he knew what it was like out

33:24

there and what services we had available.

33:26

So he was really able to work

33:28

with me having that knowledge of what

33:30

it's like to really help facilitate this

33:33

kind of integrated

33:35

healthcare between my rural town

33:37

and the private hospital I

33:39

was seeing out here in Brisbane.

33:42

And it was really great to have that

33:44

continuity between us. Did

33:46

you pick a four-leaf clover at some

33:48

point in your news Ayana? Because this

33:51

all sounds like one of

33:54

those wonderful, we hope everyone

33:56

has that situation but again

33:59

Ed Giles. I'm sure that

34:01

that is one of those again, wonderful

34:03

happenstance. Absolutely. But I think what this

34:05

shows, I understand is that it is possible

34:07

for patients in rural

34:09

and remote areas of Australia to actually get

34:11

good care. That is feasible. But the models

34:14

of care at the moment are not set

34:16

up in a way to deliver that easily.

34:18

And it's only through sort

34:20

of imagination at the moment and creativity.

34:22

The systems really aren't set up because

34:25

our models of care are very focused

34:27

on specialists who are often metro based.

34:29

Whereas a lot of care for people with

34:32

chronic conditions can be provided through

34:34

specialist nurses who are much better

34:36

actually at coordinating care between say,

34:39

GPs who can act locally and be

34:42

advocates, local hospitals that can often provide

34:44

the vital infusions that

34:46

keep young people and

34:48

older people going with their IBD. So

34:50

the model can work and particularly with

34:52

telehealth now, we definitely have very little

34:55

excuse. But the incentives really aren't

34:57

there to make it work. To

34:59

make it work to have those specialist nurses,

35:02

obviously looking over a number of

35:04

conditions in remote areas, is that

35:07

the piece we're missing? So Crohn's and

35:09

Clyde is Australia who I represent who are

35:12

the sort of national advocacy body. They're working

35:14

really hard with a number of other organisations

35:16

to join together because there can be some

35:18

synergy with other chronic inflammatory conditions. Some of

35:21

the treatments are similar. Some of the challenges

35:23

for young people are similar. They're obviously separate

35:26

ones. But this idea of local

35:28

coordination often with a central team

35:31

because I think with good communication

35:33

we can provide care in

35:35

our enormous country quite well. But it

35:37

does require a degree of coordination. It

35:40

requires some people on the ground and a

35:42

sort of a system

35:44

that will make that work. I

35:47

also just want to start with you

35:49

as well Associate Professor Ed Giles around

35:51

something I mentioned at the top which

35:53

is of course you've got those physical

35:55

conditions and that management is

35:57

tough depending on your situation.

36:00

psychological impacts especially for young

36:06

people coping with illness. How much do we have

36:08

an understanding of that in terms of our

36:10

support? Well probably not enough. I think again our National Quality

36:14

of Care project recently showed that

36:16

over half of young people, so

36:18

children with inflammatory bowel disease in

36:21

Australia, suffer psychological distress

36:23

that would put them with a diagnosis of depression, anxiety or something

36:26

significant like that. Now we have young people

36:29

generally in Australia but these figures

36:31

are much much much higher than

36:33

the general population and the

36:36

sort of support services we have for that are actually

36:38

very limited for mental health generally, for mental

36:40

health in the regions and remotely even

36:42

more so but I would also stress

36:45

that when you have a condition like

36:47

Crohn's and colitis where the symptoms can

36:49

be a little bit embarrassing sometimes needing

36:51

to go to the toilet, bloody diarrhea,

36:53

abdominal pain, people you know there are

36:55

particular stresses that are related psychologically to

36:58

this condition and we have no facility,

37:00

there is no centre in Australia, metro

37:02

or otherwise, that can provide this sort

37:04

of care that's required and is available

37:06

in some countries and I think we're

37:08

leaving our young people behind. I've definitely uttered

37:11

the words bloody diarrhea before as

37:13

well. Ayanna, I know that that

37:15

for you described there by Ed

37:17

is something that you had to

37:20

go through. The symptoms and the

37:22

the the capacity for you to

37:24

share your experience as well. Do you

37:26

think it was particularly tough living in this

37:28

in the area that you were with a

37:31

smaller population? Yeah,

37:33

I definitely think so. I became known

37:36

in my town as the girl with the sore bum. It

37:41

was a nice like joke,

37:43

running joke throughout the town. I

37:46

know it means well but those sorts of things

37:48

can you know they can really cause a lot

37:50

of harm too can't they? Yeah,

37:52

they can yeah absolutely. I

37:55

think getting access to mental health was

37:58

it was never really The. On

38:01

either the make care suggested as

38:03

an of said treatment As a

38:05

new I'm like it wasn't really

38:07

considered when I was first diagnosed.

38:09

On the going back I would

38:11

definitely. Try and figure out

38:13

a way and how to get that support that

38:15

I needed. This

38:17

a tix hear that reflects probably something

38:19

that we've all heard a high disinterred

38:21

guess. I was at the at the

38:23

Gp at age twelve trying to find

38:26

out what was wrong and did not

38:28

get the diagnosis of cons until I

38:30

was fourteen years. Old it was

38:32

brushed off as hormonal and generalized

38:34

pain for twenty eight ease. ironically.

38:36

Ali Brulee and diagnosis yet grew up

38:39

in in a Melbourne has lead up

38:41

to the getting more sponsor to women's

38:43

pain and health concerns More these ease

38:45

over the cost as an adult on

38:47

a low income has been a barrier

38:50

to accessing services for myself and my

38:52

child. That from dial up prefer said

38:54

associate professor I mean I'm just giving

38:56

you a complete you know advancement in

38:59

your career which I think he deserves.

39:02

That's quite common in the gendered aspect

39:04

of this as well. We heard. Iona

39:06

describing that it's also being

39:08

at a young girls. Yeah,

39:10

absolutely I think I mean there's a

39:13

lot of challenges their and I think

39:15

accessing the services we talked about some

39:17

of the costs particularly really tough to

39:19

access things that can be extra costs

39:21

for patients suits through the remotely I

39:23

think what I would say in earnest

39:25

such as sort of champion for young

39:28

people with with crimes and clauses and

39:30

will I be they generally but I

39:32

think hopefully one thing that listeners will

39:34

get is that this is not a

39:36

rare condition. There are lots of young

39:38

people suffering similarly and sides while. i

39:40

don't think the services are out a question i

39:42

think there's more that we should do is a

39:45

saucy and that's that's why i'm here to die

39:47

blessing it's really important but the people listening and

39:49

they're really sat there are thousands and thousands of

39:51

have children with ib to in australia and and

39:53

i think it's important die know that they aren't

39:56

the only people going through that journey and mean

39:58

i reached out to crimes and colossus being

40:00

open and I don't think it's right how

40:02

Ayanna was labelled but she's really embraced that

40:04

and that's obviously been important for her to

40:07

deal with this and finding ways to deal

40:09

and get on with your life which is

40:11

amazing and I hear and have the privilege

40:13

of dealing with young people every

40:16

day who do manage to get on

40:18

despite all their challenges. Yeah, it's

40:20

a wonderful thing Ayanna that you join

40:22

us today and express this in the

40:25

way that you are. Well, listening to

40:27

Life Matters on ABCRA and I'm just

40:29

into Parsons, final question for you Ayanna,

40:32

what would you like to see change

40:34

especially in that regional location for young

40:36

people suffering IBD or other chronic health

40:39

issues? Yeah,

40:41

I think really getting that holistic

40:43

help from a team of specialists,

40:46

for me personally I just had contact with

40:48

a paediatric gastroenterologist but it would have been

40:51

really great to have a team who I

40:53

could contact for all the different kind

40:56

of symptoms and consequences that pop

40:58

up as a result of having this

41:00

diagnosis. For example, mental health support or

41:02

having access to support nurses and things

41:04

like that. You would be

41:06

very pleased to see how vigorously

41:09

Associate Professor Ed Giles is

41:11

nodding in agreement with you. Finally

41:14

from you too Ed, what do you

41:16

think and you've talked about that consistent

41:18

care and that central point. I don't think

41:20

I could say any better than Ayanna said it

41:22

herself actually, that's exactly what we need but we

41:24

do need a model where that can be funded

41:28

rather than just this specialist driven care

41:30

looking at the patient as a whole

41:32

and their needs whether they live in

41:35

regional or remote Australia or metropolitan

41:38

Australia, they should be able to receive the

41:40

same sort of bundled care. Look,

41:43

Ayanna, thank you. Someone with Crohn's,

41:45

I'm very grateful for what you do

41:47

getting out there and talking about

41:49

it and normalizing and providing that

41:52

insight for other young people. Thank

41:54

you and congratulations and also Associate

41:57

Professor Ed Giles, pediatric. Gastroenterologist

42:00

at Monash Children's Hospital. Thank you

42:02

very much for joining us today.

42:05

Next, a look at how

42:07

the bucket list has transformed

42:09

people's end-of-life agency. Thank

42:31

goodness there's Gruin.

42:34

Wednesday nights on ABC TV and

42:37

always free, always entertaining on ABC

42:39

IZU. Have

42:42

you wondered what you would do

42:44

if you received a diagnosis for

42:46

a life-limiting illness? Would

42:49

you pull out your bucket list and start ticking

42:51

it off? Or do the

42:53

dreams you had for your future change?

42:56

Faced with mortality, what does a

42:58

meaningful life look like? And

43:01

when it comes down to it, is ticking

43:03

off a bucket list as important as we

43:05

imagine it might be? I want

43:07

to hear from you. How did

43:10

a life-limiting cancer diagnosis change your

43:12

priorities? What became important

43:14

for you to do? Joining me

43:17

is someone who has done a

43:19

lot of thinking about this. Dr.

43:21

Leah Williams-Vizzi is a postdoctoral fellow

43:23

in sociology at the University of Sydney.

43:26

She's co-authored a study into

43:28

meaning, mobility and mortality after

43:30

a cancer diagnosis and

43:33

it's published in the Journal of Sociology.

43:35

And what took the list of things

43:37

that people wish to do might not

43:39

surprise you, but it's the reason why

43:41

that tells the story.

43:43

Welcome to the show, Dr. Leah Williams-Vizzi. Good

43:47

morning, Center. How does a cancer diagnosis change

43:49

the way we see our future and do

43:51

we want the same things that we might

43:54

have wanted before? That's

43:56

a really good question. So I think we talked

43:58

to people who

44:00

were living with cancer and some of

44:02

their family and friends and we talked

44:04

quite broadly with them about their experiences

44:07

and we weren't really actually looking for thoughts

44:09

about travel and bucket lists. We were thinking much

44:11

more broadly but it came up so much that

44:15

we went back and looked a lot more and

44:17

people talked about travel so much that we had

44:19

to just go back and analyze it a bit

44:21

more. So one of the ways that people talked

44:23

about it was when they were telling us about

44:25

their diagnosis as well as saying how shocked and

44:27

saddened they were. They also talked a lot about

44:30

their life really being thrown off course and

44:32

the way they talked about that was through

44:34

travel plans. I had all these travel plans,

44:37

I was going to Europe, I packed everything

44:39

up in my caravan and now the

44:41

caravan's on blocks on the shed. I've got to

44:43

deal with all this other stuff. So there's a

44:45

real sense that travel is really associated with the

44:47

ability to kind of write your

44:50

own story, to control your life and

44:52

cancer really coming along and throwing that

44:54

off course. And then the other way

44:56

that is perhaps more related to the

44:58

bucket list idea was some

45:00

people really got this sense of urgency to

45:02

suddenly get things done. The

45:04

awareness of the brevity of life really kind

45:07

of kicked them into action and said I've

45:09

really got to build a house, renovate

45:11

a house, go travel, do all these

45:13

things. So that sense of kind of

45:16

urgency was a common theme as

45:19

well. So on that idea

45:21

of the bucket list, did you see

45:23

travel just coming up again and again

45:26

as people's, the thing that they most

45:28

wanted to do? It definitely

45:30

came up a lot spontaneously. People

45:33

talked about wanting to

45:35

climb mountains or go to Paris

45:38

or travel across Australia, but

45:40

it wasn't the only thing. Other People

45:42

said there was a sense that people understood

45:44

that the bucket list or this kind of

45:46

agnostic travel was something that maybe they ought

45:49

to feel like they wanted to do. And

45:51

Other people kind of pushed back against that

45:53

and said it's not important to me. I

45:55

Don't really have a bucket list like that.

45:57

I Just want to spend time with. My

46:00

children I just want to live long enough to see.

46:02

My children go on fox things that. Other

46:04

than incessantly people talks about it as something

46:06

that say had heard in that kind of

46:08

cultural he says it as something that they

46:10

will be devastated. Some says didn't resonate with

46:13

other Pts on duty to to didn't resonate

46:15

with at all. That's really interesting isn't it

46:17

that isn't full to die mates and that

46:19

almost kind of predisposes us to think about

46:21

this idea of least get through. My.

46:24

Idea I think is a kind of broader

46:26

cultural idea about being productive you know with

46:28

through online now being productive to achieve things

46:31

to conceal said in a to be busy

46:33

to optimize our life that always the up

46:35

the south living all best life you know

46:38

we have the idea of a solo and

46:40

all those kind of it'll these things as

46:42

as often come through on social media or

46:44

unlike in a these colors logs or whatever

46:47

about how you will to live your life

46:49

and then when people comes a point where

46:51

their life is pat sources and they. Thought

46:54

it might be some of those things. really. com

46:56

authentic can be a real pressure for. People and

46:58

that is something. That some

47:00

of the people he spoke to as well

47:02

and you know they said actually, it's quite.

47:04

It's either it's it's expensive to do that.

47:06

Travel. It's tiring in a when you

47:08

have can see or from going so

47:10

quiet and difficult treatment. My side effects

47:13

as a lot of complications. And times that

47:15

insurance and things like that and some people to

47:17

set a cut up. Not something that I would.

47:19

To days of the other people it's really

47:22

really really important in as people leave the

47:24

associated travel with being alive in it with

47:26

being as had no one has and it's

47:28

he said you know when I get on

47:30

a plane I feel alive since the vitality

47:32

was really a deeply ingrained in lot of

47:34

people as well and I think the other

47:36

thing and was a kind of mentioned at

47:38

the beginning with about planning. That's not just

47:40

the experience of going and seeing things and

47:42

doing things, it was a sense of planning

47:44

that was really important. A lot of people

47:46

as well say having event is having something

47:48

to look for with me. and precipitating

47:51

and a and accomplishments of i

47:53

allowed my society as a man

47:55

anticipate every happiness as as an

47:58

important ingredient for that overall kind

48:00

of mental health because looking forward to

48:02

something, we kind of live in that

48:04

excitement in the moment. Right.

48:07

And this is also about the sense of

48:09

control. People felt that cancer had really taken

48:11

away a lot of their control over their

48:13

body, over their plans, over even their daily

48:15

routines. You know, so, you know, one person

48:17

said something like, you know, this disease is

48:19

not going to control me. I'm not going

48:21

to sit still and do nothing. I want

48:23

to go travel. The sense of it giving people

48:26

a reason to keep going and a sense of

48:28

reasserting your normalities.

48:30

So for a lot of people, they used to

48:32

travel a lot before they have cancer, had to

48:34

travel a lot of their

48:36

travel plans when they got cancer and

48:38

then reasserting that normality for them, which

48:40

was travel. So I think you can

48:42

think about travel in lots of different

48:44

ways. In some ways, it's really extraordinary.

48:47

You think about, you know, these extraordinary

48:49

memories or going to see the Northern

48:51

Lights or seeing Paris in the springtime

48:53

or something like that. But it can

48:55

also be really deeply ordinary for a lot of people.

48:57

And a lot of people have, you know, travel every

49:00

year. It's something that they do. It's a routine.

49:02

It's a plan. They go with

49:04

people. And so going back to being able

49:06

to plan that travel was really a way

49:08

of kind of going back to normality after

49:10

this kind of really intense period

49:13

of treatment and things like that. It's

49:15

interesting that you mentioned as well earlier

49:17

that, you know, we have this kind

49:20

of embedded idea of getting

49:22

things done. You know, that's what the human life

49:24

is about. Is there something

49:26

to be said to for the pressure

49:29

that puts on us when maybe some

49:31

of this is about actually this is

49:33

about an acceptance of a state that

49:35

we can often not do

49:38

much about? I

49:40

think it can be a real double-edged sword.

49:42

You know, on the one hand, I think

49:44

sometimes we know from other research that when

49:46

people get to the end of their life,

49:48

a really core kind of form of suffering

49:50

is if people have regrets. You know, if

49:52

people have left things undone, if they've got

49:54

unfinished business, they've haven't told people things they

49:56

want to tell them and things like that.

49:58

So in some ways. thinking about

50:00

bucket lists in a kind of broad sense

50:02

of what's important to you, what's meaningful for

50:04

you. It can be a way of avoiding that

50:07

kind of suffering at the end of life.

50:09

So I think they can be really important.

50:11

But I definitely think we need to be

50:13

wary of this pressure to be busy all

50:15

the time, even into the end of life.

50:17

And, you know, again, it can be brilliant.

50:20

You think about productive aging, you think about

50:22

all these different ways that people are encouraged

50:24

to be active in their communities and get

50:26

out in the bowels and do things. And

50:28

that can be a really, really positive thing.

50:30

But yeah, absolutely, I think there is also

50:32

a space for acceptance and, you know, perhaps

50:34

finding quiet space or doing things that

50:36

are just, you know, meaningful to you that

50:38

may not be, you know, great on social

50:41

media or may not be about, yeah, you

50:43

know, being busy all the time, and even

50:45

right up to the end of your life.

50:47

And I think making space for acceptance

50:50

is yet is also really important. And that came

50:52

through in our study, you know, a lot of

50:54

people did talk about, you know, living day by

50:56

day, taking each day as it

50:58

came, you know, really living in the

51:01

moment, as opposed to making all these

51:03

big plans. I'm also

51:05

interested to know about the

51:07

cultural aspect of this, how Australian is

51:10

this idea of bucket list? Or does

51:12

it kind of transverse, you know, all

51:14

countries? Yeah,

51:16

I mean, I think it isn't, I mean, obviously isn't

51:19

just specific to Australia. It's, you know, it's a bigger

51:21

cultural phenomenon. If we think about the

51:23

movie that popularized the turn the bucket list,

51:25

that was no big Hollywood movie with Jack

51:27

Nicholson and Morgan Freeman in 2007.

51:29

But I think there are some specific

51:32

things I think travel is really central

51:34

to a lot of people in Australia,

51:36

their identity, I think it's something to

51:38

do with, you know, being so far

51:40

away, our colonial histories of travel and

51:42

migration, and this sense of, you know,

51:45

for a long time, and probably still

51:47

today, you know, if you spent your whole life

51:49

in Australia, some people will maybe look down on

51:51

you, you haven't been to Europe, you haven't been to

51:53

those other places. I

51:55

think it's, it can be quite culturally specific.

51:57

I think we know we often think about

52:01

travel in relation to life transitions.

52:03

And again, this isn't just like

52:06

just for Australians, but it is very

52:08

common in Australia. You might think about,

52:10

you know, the gap year after high

52:12

school or university and

52:14

the grey nomad phenomenon, you know, the traveling

52:16

around Australia and your caravan. Those are real

52:20

strong Australian cultural tropes,

52:23

if you like, but are not necessarily true

52:26

of everywhere. And there's obviously

52:28

links with class and money

52:30

and things like that as well, you know, travel is

52:32

not necessarily a cheap thing to do. Dr.

52:36

Leah Williams-Feezy, we need to

52:38

say goodbye, but I do need to know, have you got

52:40

a bucket list? I

52:43

actually don't have a bucket list. I'm

52:45

more of a living in the moment

52:47

type of person, but yeah,

52:49

I think that they are really important

52:51

to some people and people are often surprised when I

52:53

say that I don't, so I'm not sure

52:55

what that says about me. You were supposed

52:57

to say my bucket list has got ticked

52:59

off speaking to you on the radio. Gave

53:01

you an opportunity Dr. Leah Williams-Feezy. Fascinating

53:07

topic and wonderful research that you've done.

53:09

Thank you very much for joining us

53:11

today on Life Matters. Dr.

53:14

Leah Williams-Feezy, postdoctoral fellow in

53:16

sociology at Sydney University. So

53:18

much incredible text messages coming

53:20

through, especially about home care

53:23

packages that we spoke about earlier. Irene

53:26

writes, at 69 I live alone

53:28

on rural acreage, a chainsaw, part,

53:30

split and stack my own wood.

53:32

I also maintain a huge area

53:34

cutting grass around my house. Grow

53:36

my own veggies. I'm always busy

53:38

and walk my rescue dog a

53:40

good three hours a day. Irene,

53:43

I have purpose and

53:45

believe being active shows that the

53:47

aging process slows down. Hopefully I

53:49

will drop off the perch without

53:51

needing anyone. What

53:53

role does class play in

53:55

our closest relationships? From

53:57

confronting the differences in how you grew

54:00

up. to the challenges of managing money

54:02

together. What does it mean to

54:04

find yourself in love with someone from a

54:06

different class? That's coming up next

54:08

time on Life Matters. You've

54:27

been listening to an ABC podcast.

54:29

You can discover more ABC podcasts,

54:31

live radio and exclusives on the

54:33

ABC Listener.