Episode 1 - Learning to Fly!

Power to Care Radio is a platform for the voices, stories, and strength of unpaid carers—people whose contributions often go unseen, yet underpin the wellbeing of our communities every single day.

Hosted by Kristine Rawlinson, CEO of Power to Care and a lifelong advocate with over 30 years’ experience across health, policy, and community leadership, alongside co-host Michelle Willoughby, a respected professional in the carer sector, this series brings together real and grounded conversations about caring. Michelle also brings deep lived experience as a carer for her mother, who recently passed away from Huntington’s Disease, offering insight shaped by both love and loss.

Together, Kristine and Michelle create a space where honesty, connection, and advocacy meet—bridging professional knowledge with lived reality.

In this first episode, we set the scene—exploring what it truly means to be a carer, the hidden realities behind the role, and why it’s time to shift the narrative. From navigating systems to preserving identity, from burnout to resilience, this is a conversation that recognises carers not as an afterthought, but as essential.

This is more than a radio show—it’s a movement to ensure carers are seen, heard, and valued.

Transcript

SPEAKER_00 0:52

Christine Rawlinson and Michelle Willoughby and we are Power to Care and we're here to talk all things carers, not your average carers. We are your tired carers, your exhausted carers. Some say we are carer vigilantes. We are not gentle. So if you're listening while driving, cooking, or lying away at night, you're in the right place. So join us for the ride and let's have some fun. And we hope you're going to find today's session informative, fun, engaging, and a great listen. Now before we go any further, I'd like to take a moment to acknowledge that we're broadcasting today on the lands of the Jiajawarung people, and I'd like to pay my respects to all elders, past, present, and emerging. Now I'd also like to pay my respects to any of the carers who are listening to our programme today. And some of you may not even know that you're carers because the work that you do is often not recognised, it's often invisible and it's not paid for. So please know that we see you and we recognise the work that you do.

SPEAKER_05 2:07

We acknowledge carers whose work is unpaid, unseen, and often unnamed, yet essential.

SPEAKER_00 2:14

So why on earth are we two women here in a studio doing a program about caring? It's not your everyday program choice. And why did we choose a song by Faith No More as our anthem? It tends to be that people think that carers are old ladies who like to crochet and niche and play bingo and love to be charity cases. And that's not what this program is about. We want to reflect that being a carer is a normal part of life for 12% of the population. And if you're not a carer, you will know one, you will be one, or you'll need one. So what this is, is this is a space for us to share our experience of being a carer. We are going to try and be a jargon-free zone where we can openly share our knowledge and our understanding, and we might learn a few things from each other. And it's also where we can be bloody of honest about our trials and tribulations of being a carer. We're not planning to fix fix you. We don't want you to fix us. We're not going to give advice. We don't want to do any judging. And um we really don't want any of that inspirational language. We're a journey-free zone, aren't we, Michelle? That's being outlawed today, that word. Yeah. Yeah. So please know we don't want anybody telling us we're the backbone of society, that we're the wind beneath their wings, that if only they were as strong as we are. As as, you know, we don't want people giving us platitudes. We just want an honest conversation about what it's like to be a carer.

SPEAKER_05 4:11

This is a space for carers not to be fixed, but to be heard, and a space for those who aren't carers not to fix but to listen. And I think that's really important too, is that people who aren't carers will be learning something from this.

SPEAKER_00 4:28

Yep. So throw away your crochet hooks, throw away your knitting. I want to listen to one of the first anthems that we've got to listen to today because um we always need a good dance, and um this is one of my anthems for when I'm having a rough day as a carer, because I can tell you there's sometimes there's more rough days than non-ruff non-ruff days, and this song is by Elton John, and it's called I'm Still Standing You can never know what it's like.

SPEAKER_02 5:13

You bloody like when a freezer just like us, and there's a golden load of that jobs from you, you want about the rich you're that you can go ahead and you just have to be able to do it.

SPEAKER_00 7:57

Because I was, and it was really daggy. So, yes, I hope you were all bopping to that, and that um you enjoyed that song. Now, each each week we're going to have a section called Jargon of the Day, which we oh, we should get a fanfare for that, shouldn't we, Michelle? We we still don't know what we're doing really. We need a jargon of the day. Oh, thank goodness for Pete. Thank you, Pete. Okay, so with much fanfare, jargon of the day is What is a carer? Care. The term carer. Carer. So I think some of you still haven't quite worked out what we're going on about when we say carer. What do you what do you think some people think a carer is, Michelle? Support worker springs to mind.

SPEAKER_05 8:48

So what's a support worker? A support worker is somebody who assists a care recipient with daily living who is a paid staff.

SPEAKER_00 8:56

So who's a care recipient? What do you mean? This is all jargon, man. We're gonna I'm gonna have to start putting you in the corner because Oh well that was bad. I coughed onto the microphone. Um so what's what's a care recipient? You're a jargon city. You're you didn't hear the rules at the beginning. What's a care recipient?

SPEAKER_05 9:14

A care recipient is a person who requires assistance with their daily living.

SPEAKER_00 9:22

So that might be a person with a disability. It might be someone with mental health challenges, it might be somebody who's old. So if they have age-related frailty or support needs, it could be somebody who's Illness? Illness like cancer. Um so it could be somebody who's neurodivergent, so might have autism or um other uh neurodiversity. You don't say a person has neurodiversity, by the way, that's a bugbear. I should add that in a later segment. Anyway, so a carer could be a support uh people think that a carer could be a support worker, but today we're not talking about them. Who are we talking about?

SPEAKER_05 10:05

We are talking about somebody who is an unpaid family member or friend who is providing care to the I'm not allowed to say care recipient.

SPEAKER_00 10:15

I know you can, you can. I was just being mean to you. Yeah, for sure.

SPEAKER_05 10:21

Two care recipients.

SPEAKER_00 10:22

Yeah, so um, so it's it's someone who's looking after a family member, a friend, a neighbour, could even be a colleague. It could be that you're working with somebody and that um while you're doing your pay job, you know, you might be journalists together, that that you're doing stuff that's above and beyond your job because you're mates. Now, I can tell you that I'm a carer, and guess how much the government pays me per fortnight to be a carer? Well, they don't pay me, you don't get paid right. But what is the carer allowance? Do you know what the carer allowance is worth, Michelle? Please. It's $130 a fortnight. So I feel valued. But but that's okay because that's not means tested. So, you know, I understand. So anybody who can prove that the work that they do as an unpaid carer is essential can get the carer allowance. So please, if you think that you might be eligible for that, you can head over to the Services Australia website and get that through centerlink. If you need help applying for that, you can always head over to our website, which is power to care, umpowertocare.com.au, or you could email us at hello at powertocare.com.au. But guess what? Because I am an unemployed bum and don't use any of my three university degrees or my my uh 30 years of professional experience in disability health policy making and NDIS in a paid capacity. Guess what I get paid by the government on the carer, full carer payment. Please tell me. Um it's $1,042 a fortnight.

SPEAKER_05 12:21

It doesn't go far.

SPEAKER_00 12:23

Well, no, because I am supporting a family. A family on that. Yeah. Yeah. So and um pretty much like just about every other carer I know, when I was a little girl and I went to school, and then I went to uni and I started working, I did not say when I grow up, I want to be a carer.

SPEAKER_05 12:47

I think that's really important to highlight that being a carer is not a choice.

SPEAKER_00 12:53

Correct. And I bought my house and I had my children and put them in school with the plan that I was going to be able to afford to pay my mortgage and to put my children through school and to pay for my car, and it was not that I was going to end up being a Services Australia payment recipient, and um yet here I am. Here you are. Oh my god, that just turned into a petty party, didn't it? But I suppose what I'm saying is that a carer is somebody who accidentally takes on a new identity and that they look after someone out of obligation and love and love. It's not always a joyous role, um, they're not always saintly, um, but they often get a label. And I saw something the other day about, you know, when you go to a dinner party or you just meet people and they say, Oh, so what do you do for a crust? And people are more or less summing up your worth, your worth and your value by your job title. So by you saying, Oh, I'm a carer, it really brings you down a few runs, doesn't it? Whereas if you say I'm an architect or I'm a landscape gardener, it's devalued.

SPEAKER_05 14:34

Yeah. Because it's viewed as something that is expected. Yeah, it's like often the role that women play in society is is expected and therefore not recognized and not worthy of being properly compensated.

SPEAKER_00 14:59

Yeah, yeah. And I know that people like Annabelle Crab in her book the wife drought talks about um women's invisible labour. Um and we've talked about that and it's a huge part of the care economy. Um, but I think Carers Australia has talked about unpaid carers save the government $76 billion a year. So um if we were to, you know, uh down tools tomorrow, and all of us unpaid carers were to stop providing the care we provide, the government would need to fork out another $76 billion to replace the work we do. And that's with the work that's actually been identified, given many carers actually don't identify as carers, and many carers don't report what it is that they actually do. That's right. So the um I think what we sh I think now that we're on a bit of a Chris, I want to hear about your story.

SPEAKER_05 16:08

Okay. Given I'm getting what has inspired you.

SPEAKER_00 16:11

Yeah, yeah. So I think I've I've I've alluded to it a little bit about um my background and where I came from. So do you want me to start at the beginning? I do, I do. I want to hear your story. So um I was a bit of a nerd and I, you know, was the ducks and valedictorian of my school and went to uni and studied to become a speech pathologist. And when I was doing the course, I did um I went straight into working in the disability field, and I absolutely loved working with people with a disability. So I quickly specialized in working with people who have an intellectual disability who can't speak for themselves or they might use methods other than speech to communicate. So I did a lot of work in that field. And by the age of about 26, I was managing a statewide service of speech pathologists and um did all sorts of really exciting things, and I worked interstate, I worked overseas. Um, I was employed by the state government to redesign how uh therapy services were provided across the state. So that was a really exciting opportunity. I then um had a really great role reporting directly to the manager who was closing down Q residential services. I don't know if you remember the old Q Cottages, which was an institution. So there were 350 people who were living in that institution, plus all the staff who were working there. And uh this was in the early 2000s, and we were saying to families, you know, about 40 years ago when uh we our professionals told you the best thing that you could ever do was put your family member in an institution. Well, now what we're doing is telling you the best thing you can do is take your family member out of an institution. So I was one of those professionals who was telling people the best thing they can do with their life. And uh really sharing my expertise and um expecting people to follow everything that I suggested without having the lived experience as a caretaker. Oh, I had no idea. I was I was young. I um I did have people say to me, Have you had children? Have you done this? And I was very offended because I had a university degree. I'd had two or three by that stage, and I knew it all. No, and and when I was trained, they told us, you are elite professionals, you are experts, and you should be treated with respect. So that is all how um part of how we're trained. So I did that for a while, uh and then I got pregnant. I fell in love with a guy first, I better explain that. But anyway, I fell in love with a guy and his name's Neil, but you're gonna hear a lot about Neil. But I fell in love with a guy, Neil, and um we thought, oh my god, we're both cracking on a bit. It might take us a while to conceive. It took a month, and um I then got really sick and ended up on crutches and in a wheelchair. And my manager, who was like a senior director in disability services, disclaimer, this was not at Q Residential Services, I'm another employer. So um sorry for my old boss at Q, I will not uh say that about you, it was not you. Um I because I was unable to move um very much and very well, I I needed to work from home. Now this was nearly well, it was 20 years ago. Before it was commonplace. Before it was commonplace, and my manager said to me, Your job is so high profile, I need you in the office. So you you need to start your maternity leave today. So remember, I was I had a high-level position in the disability services field, and I was more or less dismissed because of my disabil disability. So I I couldn't fight it, I just was too unwell, and I just needed to focus on my health and well-being. So I went home and had bed rest and um had my baby, and as a lark, I became qualified as a wedding celebrant just for something to do. And um, I also opened up a coffee van because I don't drink coffee, and I actually made a lot more money doing that. Um and then I had another child and um that was all great. And then uh Julia Gillard made the speech. And I don't know if you remember the day that Julia Gillard made the speech announcing the introduction of the NDIS, and she was standing up in parliament, she was actually crying as she was talking about how the NDIS was the biggest reform since Medicare, and how it was really going to be a rights-based approach to improving the lives of people with a disability. And I just thought this is what I'm talking about, this is going to address some of the issues that I had been fighting against in my career and in my personal life as well. I want to be part of this. So the first job that became available in my local community, I applied for and I got. And so I became the regional community engagement officer for the rollout of the NDIS in my community. So I live and work in the Macedon Ranges. So I was based, I live down the bottom of the Macedon Ranges, so I traveled from there up to a Chuk. and all the way across the Laudon region and I loved that job. Fast forward to 2017. Or rebound. So now we're fast forward a bit. It was it was the So you were still working in that role in 2017. Yeah. So in 2017, um you know kicking goals having a bit of a a bit of a second think about the NDIS and how fabulous it was because the rollout wasn't all that Julia Gillard promised it would be. And I'm not blaming darling Julia, I'm blaming a few other people but there were some hiccups along the way but I was I I was fighting the good fight from within. Anyway, grand final weekend picture this I went camping with about five or six other families. Our kids were um Eloise was eight Sam was eleven and we went camping um at a caravan park up at a chuca. And so it's the day of the grand final and we're all cooking a big barbecue because look off the record because no one's listening are they we like to have a bit to drink on grand final day. There's a few a few bevies involved so I just went out to go to the loo and by the time in the time that I went to the toilet and came back a friend came up to me and she said Chris Neil Neil's not well and I went well okay and I had a look at him and his face was like a grey colour and he had the shivers like he was doing a bit like the chicken tonight dance but just you know shivering shivering a little bit with his arms and I said oh no you didn't twist when you're yeah no like he was fine. I I went to the loo I came back he wasn't fine and he he's typical male Aussie bloke didn't make a fuss anyway so he just kept on and it's his favourite day of the year loves the grand final so went ahead with the Barbie sat down for the footy and he just sat up the back while we were all watching the footy cigarette in one hand VB can in the other he was going to go ahead with that footy game no matter what and at halftime he said I'm going to bed I just don't feel right so off he went. I cheered as Richmond won I was so excited and um that night he was up vomiting all night not not well at all. What were you thinking at that point, Chris? Well gastro gastro a virus. Yeah I don't know about you've got kids as well haven't you you've probably gone away with other families is there ever a time when everyone's healthy yeah there's bugs along the way there's bugs along the way dishes kids yeah there's always somebody sick on one of those trips right so I thought okay it's Neil's turn this time you know the time before we were picking lice out of everyone's hair you know it's gross it's gross you know it's just gross and you know two of my friends on this trip were nurses you know we just said he's got gastro so he'd brought his own car up and arrived later than me so he jumped in the car with Sam and drove home which now horrifies me that he drove and I stayed and packed everything up and was about an hour behind him and he went straight to bed and then the next day I said look mate let's just go I'll take you to the doctor because the symptoms were he was still he was still shivering very just flu like symptoms and he was trying to he was having those um oh gastrolite gastrolight thank you yeah so he was sucking on those icy poles and just miserable he was miserable and um we went to the GP and he went in without me and he more or less said to the GP give me a sleeping tablet I'm not sleeping and the GP wanted to examine him and he said no no no just give me a sleeping tablet or I'm leaving and um anyway so I went into chemist the chemist and when um I came back he pulled up the the his tracksuit pants and he said check out my leg it's all bruised I must have been from scratching my leg all night in bed because I can't sleep and I said oh did you show the doctor that and he said no he wanted to examine me and I didn't want him to oh okay sorry this is taking forever but this is important intel and those of you who are listening are putting the dots together then um I dropped him at home I went down the street and I came back and when I came back his right hand was purple he was trying to do the Sudoku and he was panting okay and that was when I said we're ringing an ambulance and he refused and I rang the GP and they said ring an ambulance and I said he's refused and they said we'll bring him in and when I got to the GP it had been completely evacuated.

SPEAKER_02 27:18

Wow the whole the whole so they knew they knew that he had meningiacoccal disease right and I still didn't know I still didn't know so um uh from I couldn't get him out of the car he couldn't stand so um it was deteriorating really yeah quite rapidly so yeah I think we better have a music break yeah so yeah so pretty much I'm just looking the song before was I'm still standing and I'm saying that he couldn't stand but um yeah so I think we should have a music break while I just get my thoughts together because this is a little bit a little bit triggering for me but um yeah so more or less what we did was just drag him inside and um I'll I'll fill you in on the next chapter soon but we're gonna go to your song what's your song you had a Mr Big song didn't you it's a Mr Big song a one-hit wonder but it's a banger it's one I like to listen to in the car and um it's called Be With You Hold on little girl show me what he said to you stand up little girl broken heart can't be that bad when it's true it's true fit between the both of you come on baby come on let me be the mind to show you the day to be with you to be on top of that too much come on baby come on let me be the one too to be with you we can be together baby you can make my life worth wild I can make you start to be well it's true it's beautiful in between both of you come out baby come out home let me be the one to show you one two just to be the best to be with you all right I've calmed down now so where were we?

SPEAKER_00 31:46

We were we it was a if it was very dramatic and I needed to take a breath so I hope you enjoyed the the musical interlude that was Michelle's choice of music good choice good choice now um so we've brought Neil into the the um into the GP clinic so I'm gonna speed it up now because you're gonna be sick of this story by uh episode 10 uh and the the um pretty much what happened then was he was dying and the the GP had to give him a shit ton of intravenous uh fluid and um a whole lot of antibiotics the ambulance flew us down um the called a highway at 145 kilometers an hour he went into a coma for a month and then had his legs amputated his fingers and thumbs amputated and he suffered six strokes so he's got massive brain injury and uh his whole personality's changed so um yeah so went away camping two full-time workers with two kids middle class kids in private school and life changed tell us Chris how your life looks now well I suppose I alluded to it before didn't I'm I'm a bit of a dull bludger I just um sit around on my butt listening oh what does Neil say sit around on the couch watching Oprah all day that's what he says I do for a living because you know he's he does have brain injury and that's what he thinks I do for a job and um he doesn't he doesn't really understand how difficult he is to look after.

SPEAKER_05 33:43

The impact it's had on your life it's completely changed the course of your and your children's life. Yeah not only his but yeah the entire family.

SPEAKER_00 33:52

And just for a bit of a plot twist um then in 22 um my son was diagnosed with a life-threatening eating disorder um and uh when I got him into the local mental health service they said to me uh Christine you're a speech pathologist how did you not know your son was autistic um and also he's in brain starvation and he could die now can I just say that by this stage I had um already been hospitalized myself with a potential heart attack because I was so exhausted from looking after Neil around the clock for however many years. So I didn't know that my son who was 16 was underweight and I did I could not even put one foot in front of the other. So I was desperately guilty that I had missed this with my son. And then further plot twist last year my daughter who I'd been taking from one specialist to a next to a next was diagnosed with severe endometriosis which she's had to have radical surgery for and is now on pretty significant medication to handle other um women's health issues um I have permission from both of my kids to talk about this. So I've had to do a lot of you know extra stuff around getting her to appointments and everything for that. So yeah and given Neil's situation has the onus of dealing with your children and their conditions or issues has that just fallen straight to you yeah I'm here the the thing is do you know I really there are very few people who understand the gravity of the impact that this has had on my life and um I could probably name those people on one hand and one person who was really good at explaining it to Neil we took him to see a geriatrician once and she sat him down and she said to Neil before all of this happened how did you divide up the labour around the house so how was the housework divided up between you the two and he said oh 5050 but let's say the truth it was probably 6040 how was childcare divided up between the two of you and he goes honestly 7030 and how is paid work divided between the two of you and he said 5050 and he said she said okay now how's paid work divided between the two of you now and she said and he said well neither of us do paid work except Chris can do some of her celebrant work when she can and whatever little bits she can do here and there. Okay what about around the house? And he said a hundred percent Chris what about the kids a hundred percent Chris so he's acknowledged that then she said and she's got another job and he said what's that she said you but he doesn't part of the his brain injury is the part of his brain that you know now that I'm saying that the the the part of his brain that's the worst injured is the part that gives him the insight into then understanding further his behaviour but that was that that was a really good strategy she used to help him to understand that. But yeah I liked that way that she described it that's really effective. Yeah yeah yeah so so yes I've I've tried to work because I love working and I really feel like I can offer a very unique perspective to to make some big systemic changes um and I suppose that's what power to care is trying to do um there just aren't enough hours in the day yeah do you how do you feel about service providers who don't have lived experience look some of them I'd say all of them have the best of intentions but it's misguided unless you really know what you're doing. I I remember when I um when Neil was in hospital he was in hospital for about five or six months and my manager when I was doing the NDIS work my manager came and visited me and um you know they were all so supportive everyone was so supportive initially um and then of course people move on with their lives that's that's what's that's what happens right um she said to me oh god aren't you lucky that the NDIS is here now because this is exactly the sort of situation where the NDIS comes to the fore this is exactly where you will do so well and I said yes you're right it's an insurance scheme and I know I know this insurance scheme better than anyone else I know I will be able to get anything and everything for my husband so I thought I'm a service provider I'll be able to do it I know what to do you little ripper and guess what two and a half years after he got sick it wasn't until we went on Seven Nightly News that we got a ramp for him to get in the front door of the house we didn't it wasn't until we went on Seven Nightly News and I'm not trying to advertise Seven Nightly News I'm just trying to say what level of exposing our own personal vulnerability we had to go to for us to get a wheelchair accessible toilet for him to be able to have a shower without flooding out on suite and this was after two and a half years of NDIS funded OT assessments quotes from builders all sorts of planning meetings we had um specialist planners who refused to come to the house because our house wasn't wheelchair accessible and they were wheelchair users like the idiocy of of of how decisions weren't made when people's lives and their dignity was at stake it it just I was bewildered and then I thought oh my god I used to be one of those people yeah I think the fact that you have to get the plans approved before you can by NDIS before you can proceed is just such a massive delay in the system.

SPEAKER_05 40:56

I mean for me personally um you know my mum had um Huntington's disease and she was living at home for as long as we possibly could care for her at home and um we needed an accessible bathroom and this was during COVID and um I remember applying to NGIS for the um accessibility changes you know we had the OT come and do the assessment um you know it was very clear that she could not use the shower unless those modifications were made she was then made to wait six months for NGIS to approve those plans. What did she do in the meantime? She did not have a shower for six months.

SPEAKER_00 41:45

But I'm sorry but I you know if if I was and I'm not saying that people in jail have any less rights but you know if I was somebody in jail I would have rights.

SPEAKER_05 41:58

Yeah it's a basic human requirement is a a shower. Yeah so my dad was sponge bathing her on their bed.

SPEAKER_00 42:06

But that would have cost him too because he's not a young man.

SPEAKER_05 42:10

No no um he it was extremely physical and until that you know those modifications were done that was what they had to do because but how did that make her feel too it was absolutely demoralizing on every every level.

SPEAKER_00 42:28

Because I I met your mum only on FaceTime but you know you've told me a lot about your mum and she was a real she was a real hornbag right like she was like she was very strong willed no but she was also a very good looking woman who had a great pride in her appearance yeah like that sort of stuff would have been so demoralising right oh absolutely and unfortunately it is a drop in the ocean for you know what our experience was what yours was you know but it was just it really has always stuck with me and it's something I always refer to and I just wish it wasn't like this.

SPEAKER_05 43:03

Yeah you know the fact that you can't get your house modified it's you don't want to get your house modified you don't want to turn your shower into a wet room no but you have to and the fact that you have to wait for it to go through that process of approval and then get people to come in and do the construction whereas if you could just perhaps get the construction done and then it's approved retrospectively and yeah no it's the what you have to do just very frustrating is you have to meet the needs of the system not the system meet your needs.

SPEAKER_00 43:40

Exactly and it just doesn't it just doesn't work does it and we are supposed to be flexible not the other way around.

SPEAKER_05 43:48

Yeah.

SPEAKER_00 43:48

And it's just not fair.

SPEAKER_05 43:50

And I remember one solution that was given to me on my many many long phone calls with NDIA was um don't worry Your dad can just take her to the local swimming pool and she can use the showers there, the accessible showers. And this is during the pandemic.

SPEAKER_00 44:13

Okay, now we thought we were gonna go under time. Now is that a five or a fifteen? Oh, beauty. Okay. So I would like to know should we do a song first or should we do our special welcoming our guests to our special members only club? Let's do a song, and I think because given we're talking we've been we've been doing some touchy-feely talking, and I think it'll be nice then to welcome people to our club because we have been very tongue-in-cheek, and we do want to keep it things lighthearted, but we are we are touching on some pretty serious subjects as well. So this is a beautiful song, and this was chosen by our producer Paige.

SPEAKER_03 45:39

No I won't be afraid just as long as you stand, stand by me, don't stand by me, up by now, stand by me, stand by me, stand by me, look up and the mountain, should tumble to the sea. I won't cry, I won't cry, no, just alone, just stand by me, step by step, step by me. Oh, stand by me, stand by me, stand by me, call it, call it, stand by me, stand by me, oh stand by me, stand by me, stand by me, next time on Power to Care.

SPEAKER_00 48:23

I'm feeling very funny now on Maine FM 94.9. I don't feel what was the name of the truck that they have out the front, you know, with the bus, you know, the bus that they used to have where you could get your ice cold coke and your Does it you're too young, Michelle. You don't know what I'm talking about. Commercial radio stations used to have the vans where they do hand out all the promo. Nobody knows what I'm if anybody knows what I'm talking about, can you email me at hello at powertocare.com.au and please tell me I'm not the only one who knows about the silly promo things that people on commercial radio used to do. Anyway, so you're back with Christina Michelle from Power to Care on 94.9 Main Fm. I've just divulged all of my innermost secrets about me being a carer, and I'm not saying journey. Uh and Michelle, do you want to give a quick overview? We're going to go into more depth next week, but if you want to give a quick overview about how you became a carer.

SPEAKER_05 49:25

Yeah, I think I mentioned before Mum had Huntington's disease. She has passed away this year, so it's quite recent. Um I think being a carer was always in my life, or at least an awareness of it has always been in my life. My grandmother also had the disease, so it's quite it's rare.

SPEAKER_00 49:45

Have you guys been hit by the unlucky stick? Because that sounds really gross.

SPEAKER_05 49:48

It is, it's a genetic disease, so each child of a person with the disease has a 50% chance of inheriting that. It's a genet it's caused by a genetic stutter, and it's something you are born with that um manifests generally speaking in middle age, but there is a juvenile version, and there also is an older age um onset as well. But in my family, it's tended to be that middle age. Um so yeah, I remember when my Nana was diagnosed she was in her 40s, and she they'd only recently discovered what it was that she had, the condition.

SPEAKER_00 50:31

So sorry, was she sorry, I'm I'm I must have had a brain fart for a minute then. So was she was she the first one in your family that they knew to have? That we were aware of, yes. Oh god, okay, yes.

SPEAKER_05 50:41

And then and how many kids did she have? She had seven children, and she was also one of seven herself. So a lot of affected um family members, unfortunately. Um so my nana passed away in 2007, and then my um mum was diagnosed in 2014, and um, yeah, like I said, passed away recently. So yeah, it's it's always been in my life. Um I didn't plan to work in the care space. I was working um in media for a long time after I did my uni degree, but then I had my children and I decided that I wanted to change my career pathway into this space and try to do something, you know, lemons into lemonade, I suppose. So working in this carer space to advocate for people.

SPEAKER_00 51:41

Yeah, and it brings the skills that you've got from one area into another area that needs your skills.

SPEAKER_05 51:46

Exactly. Yeah. So as my carer role increased, I also was in the space advocating for carers as well. And I've done um in the last five years um multiple multiple roles in that space and um yeah, bought that lived experience, which is just as we were talking about earlier, I think, vital to um, you know, the I'm gonna say carer space, but we're not allowed to use jargon. But I think it's just you know, we're speaking to other carers, and when you explain I do know, I have lived experience, I it's the visible, you know, just that relief that somebody understands me. And um, yeah, I just think it's so invaluable.

SPEAKER_00 52:41

Yeah, I'm I'm with you 100%, and I just I just I know that we're going to talk next week about your story in a lot more detail, but I just I know for me I experienced guilt to the 5,000th degree and I just listened to you talk and I think I could see where you'd feel guilty about that and guilty about that and guilty about that. Oh sure. Yeah, yeah, like good guilt tricks all round. So um, but the other G word is grief. You know, your mum big guy is grief. Yeah. Your mum died, and that's you're grieving that. But um yeah, there's lots of things to grieve. So now we're moving from sad stuff to something funny, okay? Sorry, but to but to make it. Oh please, please, absolutely. Now, everybody in this room except for me has heard of the we do not care club. So it is it has gone viral. So I've decided, I've made an executive decision to um we're going to have a segment called the Carers Who Do Not Care Club, and I would like you to write in with your suggestions. So I would like to call to attention everybody to become members of the Carers Who Do Not Care Club. Okay, and I'm supposed to make noises with paper and do this and bang my pencil. That upset Pete. Probably upset your ears too. Okay, so I call to attention all new and existing members. I said I think I said existing existing members of the carers who do not care club. The rules are we can say what we like, because there is no shame and no judgment. Okay. I'm gonna start. Do you have any, Michelle? I do. Okay, good. Because I've written stuff down. Your brain's bigger than mine. We do not got time for yours. Okay. We do not care if you're a support worker and you're getting paid to work at my house. Don't walk into my room while I'm having a nap. We do not care if you're an OT and you want to make an important call to write your report. When you ring me, ask if it's a good time to call. We don't care if your billing is an automated billing system. Stop sending me invoices saying that it's overdue when I've paid it. We don't care if you have um if you don't want us to know your phone number, don't use no call or ID because I won't answer it.

unknown 55:32

We get alive disaster inspires like the killer fee.

SPEAKER_01 55:47

A bit of the NASA set up falling in the sea starvation is the food that lets it disease baby.