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Susan's story with Susan Day
Episode 15 • 30th July 2024 • Your Aged Care Compass • Coral Wilkinson & Michelle Brown
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Susan and her siblings supported their parents as they aged. When the time came to access formal support, Susan discovered how confusing the process was and how long it took to get services.

Susan discusses what she noticed between the two different assessment services and the outcomes. When it was time to sign up with a package provider, Susan researched the management option that suited her best.

She talks about her journey and what she learned along the way. She realised that in not understanding the system, her parents waited longer for help.

In this episode:

  • When Susan knew to seek help
  • Making the referral to My Aged Care
  • The lengthy time they waited for help
  • Susan’s confusion and frustration trying to get services
  • The package management option Susan chose
  • Pros and cons of self-management
  • Sourcing workers
  • Buying equipment under the home care package
  • Susan’s tips for helping older loved ones to manage a home care package
  • Things to consider when getting a loved one into the aged care system
  • Being stoic works against you in an assessment

Resources Mentioned:

Related Episodes:


Connect with Coral Wilkinson: 

  

More about Your Aged Care Compass podcast: 

Are you supporting an older loved one at home and ready to give up because it’s just too hard? Your Aged Care Compass is aimed at anyone who is caring for an older loved one who still lives at home and is wondering what support is available to them.


We're Coral and Michelle, the sisters behind our business, See Me Aged Care Navigators.


Coral is a registered nurse with over 30 years’ experience in both health and aged care. A former assessor with the aged care assessment team, an advocate and author, there’s not much Coral doesn’t know about Australia’s aged care system.


Michelle is a former pharmacist with over 30 years in the public health and private sectors of pharmacy. Michelle is now client care manager for our business. 


Our story started as one of supporting our parents to remain in their own home, to be as independent as possible and remain connected to their community. We reached a point however, of needing extra support and we achieved this because we know Australia’s aged care system so well, we knew what programs could assist us and our parents.


This podcast, Your Aged Care Compass, brings together not only our personal experience in supporting our own ageing parents but also our vast professional experience in supporting other families to keep their loved ones at home. 


We will help you makes sense of Australia’s aged care system, from your first contact with My Aged Care through to the different funding streams and assessment workforces, management options for home care packages and extra funding that people might be eligible for.


There's so much more. Topics relating to dementia and legal and financial considerations will be covered, as well as real life stories of where it went wrong for people and how we guided them to get it right.

 

Your Aged Care Compass will guide you clearly and compassionately to the right support at the right time for your ageing parents and loved ones. 


Like what you hear? Please leave us a Rating and Review. We’d love you to share this podcast with any friends or family who have older loved ones.

Transcripts

Coral:

Welcome back to Your Aged Care Compass podcast.

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Taking a little deviation from

our foundational aged care topics,

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we welcome guest speaker Susan

Day, who has lived experience of

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caring for her elderly parents.

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Susan will be chatting with me about

what she did and how she did it and

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when to support her parents into and

through our aged care system to get

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them the help they needed to remain

at home for as long as possible.

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So Susan is 57 and she's a librarian.

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She lives in Brisbane with her partner

and her daughter and her toy Cavoodle.

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She has two brothers and a sister.

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When Susan first sought help for her

parents, they were still both alive.

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Mum has since passed and they were

living independently on the Gold Coast.

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Dad has moved into residential

aged care since then.

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Susan, welcome.

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It's my pleasure to have

you here with me today.

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Susan: Thank you.

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Coral: You supported your parents

to get into and move through our

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very complex aged care system.

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Just going back to the beginning,

when you were aware that they might

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need some help at home, what were

the signs that were evident to

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you that that might be the case?

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Susan: Well, mom had macular

degeneration, which was getting worse.

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So she had always been the

one in the relationship.

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She was the one that did the cooking

and the shopping and looked after

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the medication administration

for both her and my dad.

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And not being able to see, it just

got to the point where she couldn't

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do those things properly anymore.

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And because my dad was showing signs

of early dementia he was not really

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able to step in and pick up the slack.

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So it was quite clear that things weren't

sustainable and we couldn't carry on.

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With them just managing on their own.

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So, we were all, all of us, children

were stepping in to help a whole

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lot more than had been before.

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Coral: That's what happens, doesn't it?

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Everybody rallies and it's,

great while it's working.

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But as you said, it's not sustainable.

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And I know that you live about an

hour away from where mom and dad

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were so impossible to commute that,

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Susan: Yep.

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Coral: Two, three times a week.

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Susan: I was lucky I had my two

brothers lived locally, I lived an

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hour away and my sister is interstate.

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So, she was making trips

regularly, but, she'd make a trip

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and stay for about five days.

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But, it's hard to do that when you

working as well and you have to

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negotiate leave and all of that.

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Coral: difficult.

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So did you action the referral

to My Aged Care or did someone

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do that on behalf of your parents

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like a GP?

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Someone

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Susan: it's a bit of a blur.

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When you talk about my age, I remember

probably in:

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were still sort of doing all right.

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But dad had a heart attack and

being sent back home from hospital.

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And we were just thinking, no, there

must be some help that we can get them.

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And I think that's where, when we

first got in touch with MyHKN, I think

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it was my sister started the process.

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It's a bit of a blur.

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I don't really remember.

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All I know is that, it was years

later that we actually got them what

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I felt was the help that they needed.

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And I regretted not having gotten

that help for them much sooner.

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The initial the early stages

involved getting some, what I

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now know and understand to have

been the, it was a, they were

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assessed by the Regional Assessment

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Service.

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And,

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they got.

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Just services, so Commonwealth

home support package thing.

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And at the time it was just all so

confusing because I remember, taking a

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day off work to go to the Gold Coast to

be with them while the successor came.

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She sat there with her laptop.

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It took ages.

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She asked me, So many questions and

she typed away and my mom and dad

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were like looking at each other, like

they found this a bit disconcerting.

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He's a stranger coming to home,

asking all these questions and typing

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away and barely looking at them.

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And then as a result of that, remember

what they call referral codes for a

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bunch of things and it sounded really

promising, but then you go and try

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and follow up and actually get the

services that those referral codes.

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Supposedly and tackle you to, and

there aren't actually any providers

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or the providers in your area for

that particular service site capacity.

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So it was a very, frustrating.

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I think the basically what they

got out of that was a fortnightly

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cleaner for an hour and then transport

services, which they never used

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because my mom struggled to get.

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in and out of the car

that, it was like a van.

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, and she needed transport for

things like to a hospital

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appointment, to the eye clinic for

her eye injection kind of thing.

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And, It's a long day.

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You don't know how long you're going

to be waiting there for before it.

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It just didn't work for them.

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So it was a lot of time

and effort for very little,

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result.

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Coral: regrettably, what

you've just described with mum

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or mum and dad is not unusual

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Situation at that, at that entry level

what you said, taking, from:

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taking some years to kind of get to

the next level and get it sorted is

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also not an unfamiliar thing that

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we hear.

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So after , you made that

contact with My Aged Care.

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Regional assessment service assessor

came to the home and did the assessment.

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You've just described how that was,

and it, and it is confronting, when a

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stranger comes into your home for the

first time, and they're asking you a

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gazillion questions and tapping away.

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It's, it's not really personal.

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Can be a little bit unsettling

for older people as well.

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And they're wondering what's

going on and what's the outcome

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and what does this mean?

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Then you went eventually when

you've got mom and dad to

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the age care assessment team.

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How did that assessment differ?

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Did they also come to the home

or was that done over the phone?

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Susan: so I think, how we eventually got

to be assessed by the ACA team was Dad had

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been hospitalized for a heart attack and

he was going go home, and the gp, I think

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wrote a referral to the ACA team asking

for them to be assessed, saying that.

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Dad, needed care at home and mom wasn't

able to provide that care because she

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couldn't see and she needed care herself.

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So I think that's how we got the

ACAT team to come out and assess them.

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Coral: Being teams of clinicians, Susan,

did you notice that the assessment

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that they did perhaps focused a

little more on their health conditions

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or their functional limitations?

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Susan: yes, very, very

much so, definitely.

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And I just remember, At the end

of that, I was almost in tears.

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I was so grateful assessor for like, I

think she, mom and dad both felt listened

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to unlike previous assessment they felt

like, this lady was asking relevant

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questions and listening to their answers.

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It was, it was a bit of

a different experience.

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Coral: They were both approved

for home care packages.

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I At that point, weren't they?

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And was it a level

three that they were both?

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Susan: Dad was approved for a level three.

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At that point, we didn't have

a dementia diagnosis on him.

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And physically, he was a

lot better off than Mom.

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Mom was approved for a level 4 package

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Coral: Straight to the highest level.

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Just on that note I'm just thinking

when, when the level three became

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inadequate for dad's needs and his

needs were higher than that, going

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back and then getting a support plan

review, getting the ACAT to review

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that original approval for the level

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three.

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Was that fairly straightforward

or did that take quite some time

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to organize?

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Yeah.

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Susan: We, didn't do that.

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We never got him reassessed

after the dementia diagnosis.

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We did apply for the supplement.

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Coral: Oh, the Dementia and

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Cognition Supplement, which gives, an

additional few thousand dollars of funding

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Susan: Yes.

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Coral: year.

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Yep.

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Susan: But I think he

never actually received it.

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Like he's subsequently went into

residential aged care in November.

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that only applies to

people who are receiving

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Coral: The

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Susan: packages, right?

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Yeah.

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So, think it was just, we

left it a bit too late and so

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we didn't actually see that.

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Coral: So when a person is, they get

their approval from the ACAT for the

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home care package and then they're

waiting for that package to be assigned,

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that's when people generally start

researching and looking into who they're

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going to choose as their provider.

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How did you go about that?

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I guess the choices, people are very,

I guess people are a lot more familiar

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now with self management because there's

a lot of discussion about that across

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social media and and it's a wonderful

model, but it's not for everybody.

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The alternative typically is

fully managed where the provider.

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We'll arrange everything for you.

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So fully managed you've got the

coordinator who's coordinating

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all the services and support.

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And then if you opt for self managed, then

you have to do the legwork and source

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your care workers and your clinicians.

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So in making that kind of choice,

which model you were going to go

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with and then choosing a provider,

how did you approach that?

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Susan: I did a lot of Googling.

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I joined Facebook groups.

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I lurked in Facebook groups, just sort of

reading all the posts and getting sort of

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an awareness of, of the issues and so on.

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think that's it.

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I realized, like, it just seemed

to me that self managed would be a

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better option, giving, my mum and

dad a bit more, sort of, choice

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Like, just to stay in their own,

affairs and how their days were.

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We're going to go and so on and who,

who was going to come and give them the

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services that they wanted and so on.

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So yeah, it seemed like just, a better

option to me, the idea of self management.

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And I just remember, look,

it really is, it is a blur.

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And I've been trying to

remember how things unfolded.

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But I just I think I've came

across your website somehow.

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not sure exactly how,

how I came across you.

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And you were offering a

webinar that I signed up for.

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I was really impressed.

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Just with, it was just a relief

to hear someone in the field.

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With experience, like an authoritative

source of information, then, you learn

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a lot in Facebook groups, but you also

get a lot of misinformation in Facebook,

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because this is just the general public,

all chipping in and having their say, so

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it was hard to know, well, who's right,

who's wrong, who do I believe, so it was

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just a relief to sort of know that, okay,

This lady knows what she's talking about.

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And it's a lot easier to just have one

authoritative source to consult than

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to be trying to piece things together

from a zillion different sources.

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then I got a copy of your

book, which was also great.

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Same thing, one source, I could read

it, I could underline things, I could,

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turn the pages over and bookmark things

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and it just made a huge difference.

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Things started to become clearer to me.

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I realized then that the reason mom

and dad got so little the first time

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was that wasn't an ACAT assessment.

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That wasn't an ACAT assessment, and at the

time I had no idea that, My aged care is,

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it's a call center, It's

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not a service, it's not a like,

Oh, what do your parents need?

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Coral: Exactly.

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Susan: them help,

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Coral: I'm so glad you said that.

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I'm so glad you said that

because that's a distinction.

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I go on about.

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All the time.

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My Aged Care is purely a call

center or a contact center.

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They do not assess people.

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They determine, based on the information

that you give them, they determine

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where that referral is going to go.

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And if you are unprepared, if you don't go

on the front foot with all the information

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you need to get across, You will end up,

your parents will end up at entry level.

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And that might be appropriate

for some people, but it's

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inappropriate for too many people who

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need to go

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straight,

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To the ACAT.

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So I'm really glad that

you brought that up.

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Susan: Yep.

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Yeah.

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So, it was just a real eye

opener, reading the book.

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And yeah, so I narrowed it down.

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I decided, yes, we want to go

with a self managed provider.

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I narrowed it down and yeah,

finally I'd heard good things

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about one provider in particular.

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And I was lucky enough to be

able to get in with them.

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And yeah, that was

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the beginning.

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I just wish it had

happened a whole lot sooner

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than when it did.

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Yeah.

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Coral: Were you challenged to find

carers or support workers, or, can

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I just add something to that because

you chose self management and you

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have to go and source everyone,

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people, clinicians, carers, whatever

it is that your parents need, what

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did you find challenging about sourcing

your own people to support mum and dad?

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Susan: Well, there are so many.

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Not sure what you call them

platforms or apps or whatever out

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there where you can scroll through

people offering different services.

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Oh, I can't remember how many

of these I signed up for.

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And it's, I just couldn't

believe the amount of time.

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So at the time I was not working.

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My contract had ended sort

of in the COVID pandemic and

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hadn't been renewed as a result.

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So I wasn't working and I don't

think I don't think I could have

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managed this if I had been working.

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But that was another reason

why why I opted for the self

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management because I had the time.

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But yeah, I, after Registering

for, I don't know how many of those

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different platforms and searching

and trying to find people eventually

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just opted for one of them.

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And very time consuming, just

even putting together an ad.

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For workers to respond to, doing it

carefully so that they know what you

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want so that you only get kind of

person responding who wants to do that.

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And then, even so you'd get

responses from so many people

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who were just like so unsuitable.

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So that was really, really

hard and but once, we found.

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One person that was, it was brilliant.

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Like she, once we found the

right person, it was brilliant.

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My fear then was, what if

anything happens to her?

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What if something happens to her?

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And so then I went on another big

effort to, to find someone else.

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Just so that I could have more than

one support worker like, the one

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wanted to take leave or something

came up in her own family or whatever.

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So, that was a huge relief.

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And also just the initial work.

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So, A lot of what mom and dad needed was

equipment, like, they needed beds that

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could be raised and moved and so on.

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seat, like a swivel seat that

mom could get up from easily

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recliners and things like that.

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So they were one off things.

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Coral: And did you have to

find an occupational therapist

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to do that assessment that

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would satisfy the provider or?

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Susan: I, I was fortunate in that the

provider that we chose did not insist.

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That we get an occupational

therapist report.

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I was very grateful for this

because I was very much away from

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things I'd read in Facebook groups.

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That was often the case.

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Anything that you wanted had to come

with an occupational therapist's report.

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And it's, things like that.

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They just sound it doesn't sound like

it, but every single thing requires time,

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Coral: It does.

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Susan: time.

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And, Anytime someone had to go and be

mum, mum and dad, I usually took the

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time off work to be there at the same

time, just so that I could make sure that

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everything was in order, and that they

were getting the right story, and so on.

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So, yes I was fortunate enough

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Coral: I'm really glad that you raised

about the time that it takes, because

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one thing that bothers me and my, I

support my mom to self manage her home

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care package and it does take time.

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Thing that, that kind of bothers me is.

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And I see it's, I see it playing

out in social media is the

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attractiveness of self management

because the fees are lower.

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And I always say to people, It

shouldn't base your decision on the fees.

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You have to understand that self

management, yes, it does give you greater

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choice and flexibility, but it does take

time and it takes time to set it up.

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And it does take time ongoing, like you

were saying, what if something happened to

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one of those carers to to maintain that.

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And then potentially if you

had needed a clinician to go and

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source your clinician as well.

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So, wonderful that you've highlighted

that because I , think it's

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important that people understand self

management is a great option, but.

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It does come with some challenges

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Susan: Yep.

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Coral: as well.

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Susan: And not not for everyone.

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Yep.

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Yep.

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Yeah.

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Coral: honestly.

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Like I talk about my dad who had

dementia, there was no way we

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could have self managed his home

care package because we were just

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completely exhausted just doing it.

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Giving that additional support that he

needed on top of the home care package.

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And we were fortunate that at that

time that the fully managed provider

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that I chose was very supportive and

very responsive in communication.

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So when I said we need this, or we

need to change this, they did that,

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but extending ourselves to self

management for dad would, it was,

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it just would have been impossible.

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So really important that people.

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Consider their capacity.

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And, is it worth, potentially 15 percent

is what most self managed providers

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charge, in our experience, most, a

lot of fully managed providers tend to

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charge around 30 percent in combined

fees, maybe paying that extra 15

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percent is worthwhile for some people.

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So I'm really grateful that you

brought that important point up.

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So I was going to say to you, perhaps

you've kind of answered it, but I'll

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just give you another opportunity in

case there's something you wanted to add.

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But I was going to ask you any tips

for people who might be considering

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assisting an older loved one with self

management of their home care package.

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Susan: yes.

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Well, like, like you said, we

have already covered very much.

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So making sure that you

do actually have the time.

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Coral: I think what's coming through from

you, Susan, is, doing your research.

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I think that's come through loud and clear

to me that you did a lot of research and

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consideration before making that decision.

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Susan: Yes.

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Very true.

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And yeah.

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Yeah.

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So I think.

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So I say, I think.

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The sort of key things are key decisions

are choosing the right provider and

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the appropriate sort of model and then

just being aware that there's going to

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be a lot of time and effort involved

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in especially personal care services,

like it was really hard finding someone

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that mum trusted enough to help her

shower, so yeah, you, you need to

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feel comfortable with the person

providing those kind of services.

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And so for that, that reason, I

was glad that we were self managing

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because we had that say in who

was coming to provide the services.

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Yeah.

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Coral: Fantastic.

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Well, you did a great job of setting

your parents up so they could remain

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at home for as long as possible.

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With the support that is available

from our aged care program.

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Do you have any advice for people

who might be considering getting

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their loved one into the system now?

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Any tips that might make

this process easier for them?

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Susan: I would say if you're

considering getting your loved ones

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into the system now, then do it.

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Because I think there's

quite a long lag time between

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getting approved for something.

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:

Getting assessed for something,

getting approved for something.

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And yeah, I would say just, I'm

trying not to, not to be too blatant

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:

about plugging your, your book

and the resources on your website.

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Honestly the articles that you have,

the blog posts that you've written I've

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actually I've referred friends to them,

and I've referred people to them as

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well in the Facebook groups when I see

people asking a question, I just say,

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look, just go to someone who knows,

go to a source that's authoritative.

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So, yeah, don't waste time, just yeah.

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It sounded by an act on it.

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Don't wait, because in the end, my mom

and dad, I think the the a cat assessment

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when they finally got an actual a cat

assessment, rather than a just a res

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assessment.

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:

It was in October of 2022.

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And then Mum passed away

in November of:

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So, we had this very short window.

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We had this huge flurry of of activity

and setting things up, finding services

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and things to put in place for them

to remain in their own home, but it

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lasted in the end for such a short time.

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And I really wished that we

could have done more sooner, but

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we didn't know what we were dealing

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with.

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Coral: Yeah.

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Susan: because of all the

misinformation out there.

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It's just a very, it's

a murky area, isn't it?

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Coral: It's

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murky

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:

and it's complex.

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And like you said, the

amount of misinformation out

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:

there, it's just too much.

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And look, I'm not going to

say, from official sources,

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:

there's misinformation as well.

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So, it's regrettable that that happens

because it does, it does mean that

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people get off on the wrong path and

it means they become more lost in the

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:

system and more confused and people

give up when they're at that point.

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So they delay getting those services.

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We always say as well, people say to

us, well, when's the right time to, to

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action is to get support for mum and dad.

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And we say, well, if you're thinking

about it, then now is the right

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:

time

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to do it.

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Now, don't delay.

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Susan: And there is another bit

of advice that I, I, I realized.

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So it was I think my mom and dad had

more than one assessment, father RAs.

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So once again, before I realized

that there was even a different,

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:

a difference and that I think as.

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:

Subsequent assessment when things

were getting harder and we realized

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:

it and we thought, okay, let's try

this again, get some more help.

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:

And once again, we got a res

assessor, but what mom and dad

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:

were doing was putting on a brave

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:

face and saying.

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What are you struggling with?

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What are you having a hard time with?

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:

What do you need help with?

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:

And mom and dad were, well, Susan does

this for us and Peter does that for us

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:

and this is how we manage the washing

and this is, and it was all, Bless them,

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:

you know, they were, they were putting

on a, and it was true, like, but , what

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:

didn't come out of that is how all

of those of us who were all doing the

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helping, it was on top of our, trying

to keep our jobs and look after our

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:

children in pits and, living far away.

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:

It wasn't easy.

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Coral: It's not easy.

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:

It's incredibly, difficult and

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Susan: And so, yeah, we just, it's sort

of just, it's about recognizing when

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:

you need help and not being afraid to

acknowledge it and say, okay, it's

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:

getting too hard now for, for us and

our, and our families, we need help.

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:

Coral: Absolutely.

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:

Having, having that

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:

discussion with mom and

dad and just saying it.

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is getting too hard, something's got

to change really important to have that

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:

conversation or else people like you,

Susan, and adult children supporting

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:

their older loved ones get, they burn out.

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It happens, we know this, it takes a toll.

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:

worst thing people can say, they

can be stoic and say that their

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:

family is doing everything because

it, it does work against you.

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:

In those assessments, and we just say

to people, all that help that your adult

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:

children are providing, or your spouse, or

your neighbors, or whoever, just mentally

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:

remove them from that situation, and then

reflect on, what are your limitations?

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What

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Susan: yeah.

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Coral: can, you do for

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yourself?

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Susan: would you manage

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without those people?

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Yep,

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:

Coral: that gives you a true picture.

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Yeah.

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Great point.

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So look, it's been great

chatting with you today.

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You've provided our listeners with

excellent insight and advice on how you

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:

were able to support your parents at home.

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So thank you very much.

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Susan: You're very welcome.

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Coral: That concludes this episode of

Your Aged Care Compass for this week.

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Thank you for joining me again, listeners.

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If you'd like to subscribe to this podcast

or leave a review, we'd be very grateful.

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:

Until next week, take care.

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