Episode 2 - You've got a friend in me

Power to Care Radio continues to shine a light on the voices, experiences, and strength of unpaid carers—those who hold so much together, often without recognition.

Hosted by Kristine Rawlinson, CEO of Power to Care, alongside co-host Michelle Willoughby, a professional in the carer sector with deep lived experience, this episode welcomes a special guest—Michelle’s friend Amanda. Together, they bring a heartfelt and practical conversation about the role of community in the lives of carers and the people they support.

In Episode 2, we explore how connection can be the difference between isolation and belonging. From informal networks of friends and neighbours to structured community programs, we unpack what meaningful support really looks like—and why it matters. Amanda shares her perspective on showing up, staying connected, and the small but powerful ways community can sustain carers through both everyday challenges and life’s most difficult moments.

This episode is a reminder that no one should have to do this alone. When community wraps around carers, everyone is stronger.

Power to Care Radio is more than a conversation—it’s a growing movement to ensure carers are seen, supported, and valued.

Transcript

SPEAKER_00 0:59

Well, hello, and welcome to Power to Care. I'm Christine. I'm Michelle. And we've got a guest. Hi, I'm Amanda. And thank you for joining us for week two of our brand new program Power to Care. Today's program's all about community. And Amanda's here because she's played a very special role in being part of Michelle's community. So we're going to talk a lot about that today because today's focus is on voices within one's community.

SPEAKER_01 1:35

So today we're expanding the circle and talking about what happens when local voices take the mic.

SPEAKER_00 1:41

So before we go any further, I just want to acknowledge that we're on the lands of the Jaja. I want to acknowledge carers, those of you who haven't even realised that you're carers yet, and those of you who aren't being acknowledged for all that you're doing as carers. For those of you who support carers quietly. And we also want to acknowledge the friends and families who witness care up close and carry it quietly.

SPEAKER_01 2:10

Care doesn't only happen in homes, it happens in communities.

SPEAKER_00 2:15

Oh Michelle, you're a font of wisdom. You're always saying the right things. Now I'm looking on my piece of paper, and all I can see is jargon, and that's one of my big rules because one of this one of the things that this program isn't, is it's not supposed to be about jargon. And one of the first things I've written here is it's about lived experience. Now, what is lived experience? What do we say, what do we mean when we say lived experience, Michelle? We're saying we've had experience in what we're providing assistance with. So we're not just people who've gone to university and learnt about it. We've actually lived it. We've lived it. Yeah. So lived experience as caring for somebody with a disability or mental health challenges or illness or age-related uh frailty, whatever. Okay, terrific. What else is our program? We're going to be honest, we're going to be raw, we're going to be irreverent, politically incorrect. We might get in trouble every now and then for some of the things we say, but we're really going to prioritize connection. We want to make sure that we connect with people out there rather than being perfect at what we do. And what else are we going to prioritize? I've lost my I've lost my thingy. Who else is? We're going to be, we want to tell our stories. We know our stories. Our stories are important and there's something for us to learn from. But we're not, we're not stressed about being professional. There are plenty of professional podcasts out there, people promoting how they provide awesome services and supports. But they're not necessarily what we all need. We don't need all of that polish. Um, and we don't need people telling us what's right for us. We just want real carers telling real stories and saying how it affects us. That's right, this show values lived experience just as much as credentials or sometimes more. There you go. Oh, thank God somebody's organised because I've got bits of paper all over the desk, and oh god, it's all over the place. So, Amanda, who the hell are you and what the hell are you doing here? Can you tell us a bit about what brought you through this studio?

SPEAKER_02 4:37

I am very, very blessed in my life to be Michelle's best friend. Oh, that's my credential. That's why we had to do that jam at the start about not having credentials. Basically, Michelle and I describe each other as um each other's non-sexual life partner. Well, we just do life together.

SPEAKER_00 4:55

We do. Can I tell you I've actually adopted that term? Good. It's yours. For a very special person in my life, too, because it's it is such a good term because there are those people who come into your life and you don't have that connection, but you have that connection. Yes.

SPEAKER_01 5:12

Women supporting women, we we love it. It's amazing.

SPEAKER_02 5:16

Um Michelle is also, so I have a podcast called Going Loco, and believe it or not, it is a comedy podcast about mental health.

SPEAKER_00 5:25

Well, it's a pretty funny subject, really. It can be.

SPEAKER_02 5:27

We're trying to make it funny. Obviously, it's talking about serious stuff. Um, and Michelle is actually on my podcast talking about um her role as a carer and how that affects your mental health, how it affects the mental health of the person who's receiving the care and who's giving the care as well. So um when she said, Oh no, come in on community radio, want to come and talk, and I was like, of course I could talk to a brick wall, let's do it.

SPEAKER_00 5:51

Well, I've actually listened to that podcast and I have this vision. Two listeners. Double double my listeners. Double my downloaders. I um I listened to that and I Michelle told me it over-dramatized my visualization of a scene that you described of Michelle. I had her her back pressed up against the wall of the shower and I had her sliding down the wall and sobbing to like you know that scene from Bridget Jones' diary where she's singing a song about all by myself. It was a bit like that. Yeah, but that's what I pictured. She was just on the floor of the shower, sobbing, having a pity party like how no, that's not.

SPEAKER_01 6:35

I just like to sit on the floor and think in the shower. I do like to sit on the floor in the shower.

SPEAKER_00 6:40

Yeah, yeah, it's just what I do. My version was way more interesting. I know, yeah.

SPEAKER_01 6:45

Sorry, I hate to disappoint.

SPEAKER_00 6:46

Way more dramatic. But you know, when you're driving, you're listening to a podcast, I had this whole scene in my mind. But anyway.

SPEAKER_02 6:54

It's a good processing place. Love it.

SPEAKER_00 6:58

Anyway, so I suppose Amanda Robinson. Can we do a little bit of a I'm just going to go back and talk a bit about something. We're going to do a bit of a jargon warning.

SPEAKER_02 7:17

Oh, yes, the jargon warning. Go do it.

SPEAKER_00 7:19

Now, because you're probably not familiar with our uh very popular show. This is our second episode. Um we have a regular segment, this being the second time we've done it, and that segment is called Jargon of the Day. Can we have the fanfare, please, Mr. Oh, thank you. Gee, he's done it again. He's amazing. So today's jargon is informal supports.

SPEAKER_02 7:46

What does that mean, Michelle?

SPEAKER_00 7:51

It means you're looking at me with your eyebrows up like that because you're hoping I'm going to give definition. I would like that. Okay. So well this is-I know what I think. Okay. Well, because I used to be the uh regional NDIS Community Engagement Officer uh for the Lauden Region, uh for uh an organization that I probably shouldn't name, but um when the NDIS was rolled out, they had formal supports, which is those that they funded.

SPEAKER_02 8:21

Ah.

SPEAKER_00 8:21

Then they had informal supports, which are those they didn't fund.

SPEAKER_02 8:27

You're saying I should get paid to be Michelle's friend.

SPEAKER_00 8:30

No, no, because you're an informal support. You get nothing. All my life. All my life. Nothing, right? Not nothing on my writer. So you are what's called This is not getting paid. Yeah. You are what's called an informal support. Don't get paid nothing. So the system has defined your relationship with Michelle as an informal support. Now, what I what I have a problem here with is that and not everybody gets NDIS, by the way, so please don't all write in and say, but not everybody gets the NDIS. I get that. But this is also how my age care has been designed, and a lot of the supports through the health system are packaged up this way. Everything's become transactional. So supports are provided on a client-provider basis. So either you are getting paid to provide a service, or you're having to pay directly or indirectly for a service, whether that's through tax or through an individual package. But if it's your friend don't get anything. What's that? So they're the ones that aren't provided through your individual package, but your taxes are paying for them. So they're things like Medicare funded supports, or your library, or maybe your local neighbourhood house. Ah, yeah. Or your leisure centre, which might have subsidized swimming lessons. They're mainstream supports that are available to everybody in the community.

SPEAKER_03 10:23

Yeah.

SPEAKER_00 10:24

But can you tell that we're giving a lot of jargon to people out there to try and it's all very transactional, jargonized, making our life not really about living our life, it's about being part of a system. But anyway, I digress. Today's jargon of the day is informal supports. Right. So informal supports are those people and supports in your life that you don't get paid, they don't have an ABN.

SPEAKER_02 10:52

Okay.

SPEAKER_00 10:53

Okay.

SPEAKER_02 10:54

I need to up my game, I'm gonna become a professional friend and I'm gonna get paid.

SPEAKER_00 11:00

Yeah, I know. So I'll be good at that, I reckon. If you think about it though.

SPEAKER_02 11:05

Because I say yes to everything. Yeah, great idea.

SPEAKER_00 11:07

Maybe I should get Amanda to leave the room for a minute. But if you think, Michelle, can you honestly say that Amanda has been supportive to you? Uh every step of the way? Yeah. If you think about the value of what the supports that you've received that have cost the taxpayer X amount of dollars versus the support that you've received from Amanda for free? No, I'm sure it's costing you emotionally to be friends with me. But do you know what I'm saying? What what has made you receive what do you what has made you feel more valued as a person?

SPEAKER_01 11:50

Well, definitely friendship. Definitely.

SPEAKER_00 11:53

Yeah. Okay, so now I'm gonna get to a little issue. In studies reported by Carers Australia, I'm just just trying to impress you that I've done some homework. Yeah, up to 60% of unpaid carers report severe loneliness. Okay. It's very high. So that means that they don't get to experience what Michelle has just been able to report. Yeah.

SPEAKER_02 12:22

What are the barriers for that? Why are they do they does it have an explanation?

SPEAKER_00 12:28

Michelle Shall we shall we count the reasons why? We shall. Yeah, let's do it.

SPEAKER_01 12:35

Um I think the seeing the friends fade away. Um, and not I wouldn't say for me personally, but for other carers I know. Um it's it's it's too hard for people to witness the care recipient's deterioration, and I think a lot of friends do disappear, and that's where that isolation and loneliness comes into play. It it makes people uncomfortable. Ambiguous grief again makes people uncomfortable.

SPEAKER_02 13:12

What is ambiguous grief?

SPEAKER_01 13:14

Ambiguous grief is when a person is still physically with us, but they are no longer the same person. So in in my case, it was mum's deterioration with losing her ability to walk and talk and care for herself, but because she was still living, it was grief while she was alive.

SPEAKER_00 13:40

Yeah, and and so my husband is still alive, that's right. Um he's got all of the amputations, like he's had both legs amputated and his fingers and thumbs amputated. Uh, that to me doesn't make any difference to who he is, but the fact that he's got the six sites of brain injury, his personality is completely different. So for my kids, they they don't even remember him being their dad that he was, and he was an incredibly active, supportive, involved dad, and that's not who he is anymore. So you you have you have this man living there with you, who is not the man that I married, is not the man who I fell in love with, who who's not the man who was my life partner. So you you're with that person, but it's not that connection that you had before.

SPEAKER_02 14:36

What about the loss of the I think the future? Do you know what I mean? Like that's grief as well. Yeah, so like what you imagine imagined your life would look like, and what your kids' lives will look like. Yeah. And now you're like, you know, you're talking about like um the f with the first program, which I listened to. It's very good. Um that uh you don't um you know like you kind of don't carers don't often sign up for this role in this life.

SPEAKER_00 15:08

Um, it's it's tough, and I suppose it's um when you when you've got your own like Michelle's got got kids as well, so she's busy with her own family, and I think you've you've really got to focus focus on on what's important, so then you might start turning down other opportunities, which you might have been open to previously. So I know that I've probably I definitely have decreased my so social circle. I don't know about you, Michelle, but you know you've still got your non-sexual life partner.

SPEAKER_02 15:47

But I'll just go to her now.

SPEAKER_00 15:49

But d do you know what I'm saying, Michelle? Yes, it's you you do have to um what do you call it? Your social battery might flatten flatten quicker because you've got so many obligations. It's quality over quantity, definitely. Yeah, yeah. Um, I think we're going to have to have a song soon, Mr. Producer. So I'm just I'm just giving you a bit of a bit of a warning. Uh can I have a quick little rundown? Let's let's pretend Michelle's not in the room. We can talk about her. Yeah. We heard a little bit last week about um Michelle's family got hit with the lucky stick knot that they did not guess. And um can you tell us a little bit about Huntington's disease?

SPEAKER_02 16:36

Yeah, sure. So um, and I probably didn't get this until Michelle gave me a fiction book about it because we've been friends for like 20 years, and I'd heard that there was Huntington's in the family, but didn't quite know what it meant. She gave me a book called Uh The O'Brien's.

SPEAKER_01 16:51

Inside the O'Brien's.

SPEAKER_02 16:52

Yeah, which is by Alice Paul, I think. Anyway, um and this book describes so basically Huntington's is a degenerative disease, so it affects it's got like neurological symptoms, so often like so kind of psychotic features and kind of manifests in people in different ways, but it also produces physical tremors and like kind of a breakdown of the body as well. So, like Michelle was saying, um you know, often you become non-verbal, um, can't care for yourself, um kind of wheelchair or bedbound. Um it's just yeah it's like kind of a mixture between I always say it's a mixture between kind of Parkinson's kind of MS and um psychosis, I guess, with psychotic features. It's basically the worst way to go.

SPEAKER_00 17:39

So you've probably already told me and I forgot. So how long have you two known each other? Since we were 20. 20, so like 10 years.

SPEAKER_01 17:49

Two years.

SPEAKER_00 17:52

No, we're can't we're well over 20 years. Yeah, yeah. And so you obviously knew Michelle's mum? Yeah, yeah, I knew Sus, yeah. So you knew Michelle's mum when she was fit and yeah, when she was well.

SPEAKER_02 18:05

So very, very large. Yeah.

SPEAKER_00 18:08

And did she did she know she was going to have Huntingtons or she had Huntingtons when you met her?

SPEAKER_02 18:14

Okay, so this is the wild thing about Huntingtons is the um ethical dilemma of it. So her um Michelle's mum, her mum knew had Huntingtons, they knew she had Huntingtons, but Michelle's mum had already had all her kids, and there's this kind of thing within Huntington's families where also where you decide like you don't know whether you have Huntingtons or not. So you've got a 50-50 chance at Huntington. It's like Russian roulette. But you can, like, if you were planning on having children, you can go and get the gene taken out. But that if you are going to go and get tested and your uh parent doesn't know that they have Huntingtons, you go and get tested. If you have it, that guarantees that your parent has it, so you're making the choice to know for yourself, but also making the choice to know for your parent that you're following?

SPEAKER_01 19:06

No. So I can do predictive um IBF, essentially. Wow.

SPEAKER_02 19:14

You get the gene taken out.

SPEAKER_01 19:16

Or they don't take any genes of the affected person. So for example, if I was going to get IBF, um and I was gene positive, I could mean you had definitely had Huntingtons? Yeah, that's right. Um, they could take out any of mum's genetic.

SPEAKER_00 19:38

Wow. I feel like I'm being sat down for the um birds and the bees chat here.

SPEAKER_02 19:43

Yeah, but the problem is if Michelle goes and gets tested, which she did, but her mum had chosen not to get tested. She's I'm gonna live my life the way I want, I'm gonna go ahead and have kids and do do whatever I want. Um and um yeah, and I'll find out when I find out because I you know it happens. Whereas Michelle got to um Michelle decided that she was gonna get tested, but if she had come up gene positive, then Michelle would have the knowledge that her mother had it, which is something her mother chose not to find out. She found out because she got diagnosed.

SPEAKER_00 20:16

Does that make sense? Yep. Yeah. Okay. So you're her friend, and you have chosen to not back down. That's like segue into a song.

SPEAKER_05 20:36

Well up, walk back down. Noah, walk back down. You can stand me up at the gates of hell, but uh walk back down. Noah, stand my ground, won't be turned around. Can I keep this world from dragging me down, uh stand my ground?

SPEAKER_00 23:22

Thank you, Amanda, for not backing down. And I'm not going to thank you for being the wind beneath Michelle's wings either.

SPEAKER_02 23:30

That was my second choice for a song.

SPEAKER_00 23:35

So Michelle's had a pretty shitful year because, sorry, Michelle, but you know, your mum has died in the past year and you've had a really intense period over the last few years building up a whole lot of NDIS supports. Now, for those of you unaware, NDIS stands for the National Disability Insurance Scheme. Emphasis on insurance. Insurance, because it's it's actually built by actuaries who say over the course of somebody's life, if we fund X amount of supports over X amount of years, we can reduce the amount of supports that we provide and save money. And it also has created a bit of a two-tiered system. But what it's done is it said, okay, everybody with a disability, you can go through the NDIS door to get supports, and the rest of society can go through another door. So pay double the price. So if he goes to the local physio, they say to him, Do you have NDIS funding? And he says, Yes, I do, and they say, Well, that will be $220 an hour. If I go to the local physio and I say, I would like to have some physio, it's half the price. So I say to him, When you go to the physio, you just say, I'm paying for that privately. Because there is no way that he should be paying double just because he's an NDIS participant. Because it is a crazy crazy crazy. Yeah. Absolutely. So it's blatant. It's discrimination. Yeah.

SPEAKER_02 25:32

They're officers wrought in the government, aren't they?

SPEAKER_00 25:34

Yeah, yeah. And and I can tell you why. Because in in my role, when when we did that rollout, we didn't actually educate therapists about how the system worked and how to charge and how the system worked. Because so they're not actually doing it because they're dishonest. They're doing it because that's how they think it's supposed to be. These are people who are trained as therapists, they're not trained as business managers. So the rollout of the system was done in but again, oh my god, I've gone off on another tangent. You're excited. I get very excited, very excited. So back to Michelle. Shit life, shit year, that a lot. You would have witnessed a lot of changes over the past 20 years.

SPEAKER_02 26:20

Yes.

SPEAKER_00 26:21

Um Michelle would have had quite a few role changes over that time.

SPEAKER_02 26:26

Yeah, absolutely.

SPEAKER_00 26:27

So what what have you seen?

SPEAKER_02 26:31

So when we first started, you know, you go over to Michelle's house, and Mum's there, Larger Than Life, Life of the Party, always like dressed to the nines, had always had a splash stick on, and yeah, and then I think it was also I think when did you get how old when you got diagnosed? It was 2014, so 30 uh 33. She was just showing signs before that. Um interesting to watch.

SPEAKER_00 27:02

It's a lot of those signs.

SPEAKER_02 27:04

It's like the involuntary movements, yeah, and the kind of tremors a little bit more unsteady on her feet.

SPEAKER_01 27:11

Having trouble with um, you know emotions, being rigid in her thinking. Yeah. But you knew did you know what it was because of your nana? Yeah, we did, we did, but um, she was reluctant to get diagnosed. But in the end, there was no other option. So we were really lucky in a sense that we had some excellent Allied Health staff who looked after mum over those 10 years. Um it was more the support sorry, support coordinators that I found the most challenging. Support workers as well. But um, support coordinators, it was just this revolving timeout. What's a support coordinator? People don't know what you're doing. Yes, sorry, no great point. Support coordinator was the sound like an old school case manager.

SPEAKER_00 28:08

Um people don't even know what that is, probably.

SPEAKER_01 28:11

Yeah, it's basically they are paid through your NDIS plan to manage all of your expenses.

SPEAKER_02 28:20

Let's use the word allegedly there.

SPEAKER_01 28:22

Yeah.

SPEAKER_02 28:23

That's what I think.

SPEAKER_00 28:24

That was one of the hardest things to So they more or less they're they're told this is your budget. The plan says you need OT, physio, support workers, cleaning, whatever. Make it happen. Is that what their job is?

SPEAKER_01 28:38

Yeah, that's right. Um, and we I remember before we got our most recent sport coordinator who was just incredible. I referred to her as our advocate more than a sport coordinator because she just helped so much in the last two at least two years. Um before that, it was a revolving door of people um who would ring you for an hour to talk about your situation. So you would have to be constantly revisiting and retelling your story, your trauma. And then literally a couple of weeks later, somebody else would call and say, Oh, we've taken your mum's case now. We've taken your mum's case, and to the point of um, you know, absolute frustration.

SPEAKER_02 29:27

Meanwhile, Michelle's got a partner, two kids, and a like a nearly full-time job, just working four days a week. I'm like, how is today? You know, two after a day's done. And the day's done once you put the kids to bed, so you know, like six till eight, which I've got to spend all day on the phone to get the NDIS, the caseworker, or the caseworker calling and be like, oh, this physio appointment. Which physio do you want? That's your job, mate. That's your job.

SPEAKER_00 29:55

But but was it just NDAS that you had to deal with? Was that the only government department you had to deal with? Do you have to deal with any other government departments?

SPEAKER_01 30:05

I think another experience that springs to mind was Services Australia. Um So when Mum was getting transferred to a supported disability accommodation, which is an SDA, um, they uh we were told to get um rental assistance. So it was supposed to be What's an SDA? Oh, I said supported disability accommodation.

SPEAKER_00 30:32

But what does that mean, like?

SPEAKER_01 30:34

So it's a home, a home in Vedic commas for young people with a disability. Now that that this would lead me to my next point about the problem with young people being locked out of nursing homes who were, you know, have high care needs. Um that's that was, you know, a real bane of owl existence transferring mum into one of those facilities because it wasn't enough. It wasn't a high enough care. It was um, you know, they they don't even have oxygen on the premises, they're not nursing staff, they are support workers. It was really problematic, but um, yeah, that's probably you know, once we dealt with Services Australia, um going there to say this is where we have to move, mum. Uh nobody knew what an SDA was. So I think Dad and I went to um the office in person at least three times. I called multiple times, and you know what being on the phone sent link is like. Oh, it's I know that they dropped that banger, but yeah, um, it's still I love call wedding music. It's really really um maddening. Um, and yeah, and we went there and every time we'd go there would be like, oh, we'll just get the nursing home, my age care, sorry, person to come and speak to, and we'd be like, I was going, no, no, it's not my age care. She's an NDIS participant. Um, we need or that's that's irrelevant. We we need Commonwealth rental assistance, and they were like, Oh, well, but you're still married, and um you don't fit our system. Yeah, it we did not fit the system. Yeah, you don't know. That's the issue. We did not fit the system, and um so that was challenging. We finally found someone who understood what we were asking. It was very simple, it was just the rental assistance we required. Mum and dad weren't separating, we were going out of necessity to this facility. So that's you know, I mean, Services Australia have all of the information on their website about care payment, care allowance, and they've been, you know, I've dealt with them in a work sense, they've been helpful, they have a lot of knowledge, but I don't know if this knowledge is going is extended to the entire front-facing stuff, and it was it's like if the computer says no scenario or something like that. Exactly, and then it's too hard. Yeah, so that was extremely frustrating and and you know essentially traumatic. And I know my dad, he was getting quite overwhelmed with all of the jargon and with what was required, and I know he just wanted to say, oh, forget it, but I'm a dog with a bone, so I kept going and we we you know we we resolved it, but it just felt like everything was hard. And then, yes, when we got into the SDA, um, that was when I was just, you know, so it was just so unbelievable that someone with such high care needs could be in a facility that was not equipped for those needs, that the staff were just not equipped. I asked, can we put security footage in her room? She is completely vulnerable. We don't know who these staff are coming through. You know, you get casual staff who you never see once and you never see again, and they said no.

SPEAKER_00 34:06

Can I can I just put out to a bit of a privilege Mia Culpa here, too? Because we're on radio, it's hard to see us, but Michelle and I are both white, middle class educated women, and educate um English is our first language, and we have struggled struggled and fought to get adequate support for the people we care for and for ourselves. That like both of us have been on here at our wit's end.

SPEAKER_01 34:39

And that's why I think carers often say this was set up for me to fail, or this was intentionally a barrier so that they give up. And that's not necessarily the intent of service providers, but that is you can understand that feeling, that's that sentiment.

SPEAKER_00 34:59

And that does that get back to what we said before, they haven't had that lived experience that they haven't understood or been where we are to understand what it's like.

SPEAKER_01 35:08

Yeah, exactly. And it's just it is just too, you know, you have to fit that criteria, and not everyone does. And in mum's case, she needed to be in a nursing home, but she was a young person under 65. And um the fact that you know NDIS was established to, and you know, Chris, you're the expert, to keep people at home, to keep young people being cared for at home. But in our case, that didn't we didn't fit fit that, you know, in the intention and yeah, being cared for at home.

SPEAKER_02 35:48

That's full on. That's a big arc for some families.

SPEAKER_00 35:52

It is, it is, and then your home becomes a multitude of people's workplace. Now we're we are we're about to head on to a banger of a song, but before we do, I want to just say to Michelle uh ask Amanda I want you to say in in 200 words or less tell us a bit about the changes that you saw from Michelle 20 years ago to Michelle you see now. 200 words or less. What do you think she's learnt? What do you think she's had to prioritize?

SPEAKER_02 36:31

Everybody else except for her. Definitely just become a mother, like literally, but also for like oh sorry, literally, but then also for everybody else. Like, watching you try to explain to your dad that you need the NDIS because he's like, we'll be fine, and I was like, oh my god.

SPEAKER_01 36:48

Yeah.

SPEAKER_02 36:48

Like or just like getting everyone to come to the party that is like service providers, family members, friends, you know, wider family members, like Michelle has just been like a yeah, like you said, a dog with a bone. Just having to bring everybody to the party at her, you know, I guess at your own expense as well. Like it's it was it's been hard to watch.

SPEAKER_01 37:13

To be fair, my dad did a lot of the hands-on caring things. 100% for him.

SPEAKER_00 37:18

So and I think I was I was just about to pick up on that is when people say that they're a carer, or I'm a carer, people think that caring is like cleaning people's bums and feeding them. Now I don't do any of that. And what you described is the difference between what your dad does as a carer and what you do as a carer, they're both very important and very different roles. You are the advocate, you're the advocate, you are the one who does all of the admin, all of the the the nuts and bolts to actually get things happening. Um but I can tell you what, that takes up a lot of time. Yeah. It does. Yeah. Now, Amanda, you you it's your song.

SPEAKER_02 38:01

You tell us a bit about it, why you chose this song. Because it's one of my favourite songs of all time by Yu Mai, and it's called A Berlin Chairman. It's just about supporting someone to the very end.

SPEAKER_06 38:30

Run my hair, make it all shiny blue dragmas, drag my cocktail scales.

SPEAKER_00 41:07

The importance of community, because we can throw as much money at big organizations as we like, but those grassroots community organizations, like neighbourhood houses, like community radio, like you know, even to have gardening groups and local cafes where people can catch up and it's something accessible and affordable. That's where the good the magic happens, right? So I can you talk to me a bit about uh some of the things that you've I know that you do a book club, don't you?

SPEAKER_02 41:47

I do, yes. I do do a book club, and this goes back to the like the carers being really isolated. Carers being can be um very, very isolated. So I run a book club, an online book club for you know carers. Um they don't even have to have finished the book. That's how low, like it's kind of it's once every couple of months. This is how low the bar is. This is how much we understand that um sometimes asking you to finish a book is too much in between your caring role, being a mum, having you know a full-time job, and then trying to just call centering. That's it, that's it, that's your week done. Um so yeah, don't haven't finished the book, so it's just a space for people to come and talk about a book and just have some social interaction. And like that might sound like such a small thing, but whenever like I run these book clubs, there'll be like you know, 15 will um register for it, but maybe seven will turn up because something has come up that night, even though they might have spent two months reading this book, because they do generally finish it. Um, yeah, and and I can hear them talk about like how much it means to them to have some space to be able to do something for themselves because often like um I'm hearing the barriers for carers are things like I can't afford it. Like you're saying, like, how are you supposed to like with the cost of living, $500 a week, you know, a thousand dollars a fortnight with two kids and a and a husband? Like, no chance, like you're not going out buying a bloody Prada dress to wear it to that no ball on the weekends.

SPEAKER_00 43:21

You're stealing from Peter to give to Paul, really, that's what you're doing.

SPEAKER_02 43:24

100%. So, um, you know, even if it's a financial barrier, like, you know, and this book club is free to attend and and so at the book club, are people talking about the book or are they talking about being a carer or are they talking about anything? No, they are talking about the book, and that's it. It might touch on their lives, but I'm like, no, you're coming here as a book club participant. You happen to be know about this book club because you uh have uh you know reached out to this club does, you know, supports carers.

SPEAKER_00 43:56

But um Okay, because that's really interesting because because we've machine. Shell and I have uh these do si-do arguments about because we we we fight all the time, like cats and dogs, you should see it. We grab each other by the hair and we throw oh it's ugly, yeah.

SPEAKER_01 44:10

I'm stronger than I look, yeah.

SPEAKER_00 44:11

Yeah, yeah. Um, about peer support because every organization out there runs 15 peer support groups for carers that are all running on the same day in the same town, and they have three people come and they're all in a separate location, and I sort of say, why should we have segregated events just for carers? And we just don't want to hang out with other carers all the time, and it ends up being a pity party. I don't I've got a foot in each camp on this one because Power to Care is still a very small organization, but we run an amazingly successful monthly coffee for carers in Disney. And I attend that in my capacity as a really well-paid CEO. Um, I get paid twice as much as I do as every other volunteer. Um we sit around and have a coffee, and out of every one of those coffee for carers days, a referral is made to an organization. Somebody is linked in with something that's going to benefit them financially or practically, and that information isn't always from me. That will be from one of the other carers in the group.

SPEAKER_02 45:29

Okay, that this is the thing.

SPEAKER_00 45:31

Everybody in that group has got information, and I I'm the beneficiary at times as well. So I am not always the most intelligent person in the group. Um so that's that's a really good um form of peer support. But then there's also all of these hubs that are popping up, these carer hubs, and for me I just worry that we're getting a bit segregated. Yeah.

SPEAKER_02 45:57

But do you want to be around people who I would think of it as more like I suppose it depends on how you want to be defined. Like I'm in a couple of book clubs because I love reading, and I'm like, I'm a bookworm, and I want to find other people that are having the same experience as me and want to do the same things as me. But I see it's just that caring is often a hard role and comes with some.

SPEAKER_00 46:16

Yeah, I don't know how other people. That's what I'm saying. I've got to put in each camp. What about you, Michelle?

SPEAKER_01 46:21

I think it's important to be with other carers at times. I think the understanding that comes from other carers is it's you know, it's unique. They get it. Um, but I also agree that we need to nurture carers' interests outside of their carer role. And that's why we really love neighbourhood houses and community centres because they are accessible for carers, they can find peer support, but they can also explore the other interests that you have in their life.

SPEAKER_00 46:55

Well, I know this is supposed to be all about you, Amanda. Always and Michelle, but can I tell you a little secret? Okay. Do you know what I started this year? Seniors ballet. What? I know, and I'm 54 years old and I'm the youngest person in the class, right?

SPEAKER_02 47:12

I was like, can I do that? Yeah.

SPEAKER_00 47:14

Awesome. And it is a form of social prescription. Have you heard of social prescription? Michelle's nodding.

SPEAKER_01 47:23

Vaguely. I have, but I'd love you to elaborate.

SPEAKER_02 47:27

How's that for like a is this about being a professional friend?

SPEAKER_00 47:31

No, it's not. Is it NDA? No, it's not. No, it's not. So, okay, so you know what a prescription is. So pr traditionally, a prescription is for some form of medication or therapy. Um now this has been trialled in other countries very successfully, and it's getting a bit of headway in Australia, but it's not being funded by Medicare or anything just yet. However, there are ways and means, and it's starting to get popularity. I have got a referral through my GP um plan to see my local exercise physiologist at the community health centre, and she happens to run the ballet bar classes at the local community health centre, and it's me and a pack of lovely ladies, and we do ballet twice a week. And I grew up in a dancing school. My mum was a dancing teacher, and we do ballet classes twice a week together, and I cannot tell you how much they mean to me that I have increased your well-being.

SPEAKER_02 48:37

So the GP prescribed this to me.

SPEAKER_00 48:41

So you have a think about it. So these so this is fully Medicare funded, so I'm going and having two hours of exercise a week. I'm getting out of the house, I'm getting away from my caring duties, I'm not as nutty as I was. That's debatable.

SPEAKER_02 48:59

I I had to hold back from saying that.

SPEAKER_00 49:01

Yeah, I'm not as grumpy, I'm not as grumpy as I was. I have some physical issues, they're really improving. Yes. And I'm interacting, I'm interacting with people and forging friendships with people who I didn't know before. So can you see that there might be some benefits from social prescription and that the return on investment is good?

SPEAKER_03 49:25

Yes.

SPEAKER_00 49:25

And then let's circle back to what the topic of today is. I'm doing it with my hands everyone. It's really good on radio.

SPEAKER_02 49:34

Friendship alone.

SPEAKER_00 49:35

Community, friendship informal support.

SPEAKER_02 49:40

Yeah, absolutely.

SPEAKER_00 49:42

So if we were to have a community that valued social prescription over tablets. So it's a non-medical approach. Yeah. But it's still helping me physically.

SPEAKER_03 49:52

Absolutely.

SPEAKER_00 49:53

And what we find is I don't have the stats on hand, but it's pretty much people who are carers have twice the rate of physical disability than others. Because we hurt ourselves. We don't go to the doctors, we don't go to the dentist, we don't look after ourselves, we do dangerous things.

SPEAKER_01 50:11

So we should survive.

SPEAKER_00 50:14

Yeah. Yeah, so we've got to look after ourselves. Okay, so do you think we should have a song? Yes. Okay. Absolutely. What song? Oh!

unknown 50:25

I've got a boy.

SPEAKER_04 50:51

Now that you I don't my life bad, I'm not be with without you, but I'm struggling. I don't want to grow without the nopper. I'm the happy helped without your bottom button, not that I've been without the bottom millimet. I don't want to tell without the million. I've got the paper, I'm not on the button, I'm not on the paper, I've noticed, I've done the paper, I'm not a baker, I've got the paper, you want the paper, I've put the paper, I've not been a bad, I've not, I've got my powder, I've got the paper, I've got a big bad, I want the power, you want the paper, I've put it with it with that, you've got a cut and be with that without your butt and up with that with that to button, but the I would have without the button on top, but you won't be on the wall, but the I've done button, even if I use the buttons, I'm still the big I don't care. I don't want to get the I'm gonna make it I don't have the battery I'm not gonna be, I'm not gonna play on the I've better than that, I'm not compliant, I've been I'm better than that, I'm not calling that I've not been bad, I'm not the papa, I'm not something I'm not being up, I'm not the button, it's not the button, I'm not the paper I like, I'm not gonna stop the bigger, I'll put the potential I want to pop the battery, I want to be the button, I'm like the power, I'm gonna be able to Oh, I'm feeling all empowered.

SPEAKER_00 54:14

Now we need a fanfare. Can we have a fanfare, please? Thank you, Mr. Producer. I would like to call to attention all uh current and future and new members of the Carers Who Do Not Care Club. This is the Bystanders Edition. First we'll start with uh um notes. I don't even know what I'm talking about here. From our current members. Uh oh, you've got to do that with Oh no, you're not allowed to do that with the paper. You get in trouble from the producer. We do not care if you've invited us to a party, if we don't feel like it, we probably won't come because we've got just too much on. We do not care if it's 6 30 p.m. and it's still light outside. We're really tired and we're going no-noise. We do not care if a woman with boobs my big should wear a bra. I'm just going down the street to go to the post office, I'll wear a big baggy jumper. Michelle.

SPEAKER_01 55:22

We do not care if you're a paid support worker who needs to FaceTime their children whilst on a one and a half hour shift.

SPEAKER_00 55:31

Oh, I do care about that. You do? Yeah, that's bad. Yeah. Um there was something that I thought of too. We do not care, person on the center link phone line. There is no such thing as oh, there was a conversation. I can't I should have written this down before I said it out loud. They asked many me how many hours per week I worked. Do you remember this conversation? And I said 22.8 hours a week. Oh I'll have to I'll have to write down this and remember it for next week. Circle back. Yeah, I'll circle back. I forget I said that. Okay, so now we're gonna do the rejoinder by our bystander in residence. Yes. We do not care bystander edition.

SPEAKER_02 56:18

Yeah, we do not care. Okay, so from a um friend point of view, we do not care um that you think you're talking too much. You're not. Get it out, mate. Just get it out. We do not care that it is 2 a.m. We're glad you called. We're here to listen.

SPEAKER_00 56:34

Oh, because we've been. That's because we've been asleep since 6 30. Okay, now, Michelle, have you got any last words of wisdom before we say goodbye?

SPEAKER_01 56:42

Yeah, sometimes the most scaring thing you can do is not ask for anything at all. Oh, cool. Always smart.

SPEAKER_00 56:50

Now, before we go, um, and as our producer plays us out with some rockin' vibes, I just want all of you who are listening out there, who are friends of carers, who are family members of carers, and you're unsure how to help your care in your life, reach out to us at how at Power2Care. Our email address is hello at power to care and our website address is powertocare.com.au. So if you've ever wondered whether you're doing enough, this conversation is for you. You don't have to protect your friends from the truth.

SPEAKER_07 57:51

A birthday next to set up falling in the sea. The best is the food that live in fire.