Audio Transcript
Adrian Plitzco (Host) – 00:00:02: Hello and welcome to Tune in to Care, a podcast exploring the lives of carers. In this season, we shine a light on the diversity of caring communities. From bustling cities to remote outback towns, carers come from all walks of life, and though their challenges and experiences may differ, we hear how they all share the same resilience and dedication to their caring role. Tune in to Care is produced on Aboriginal land across Australia. We acknowledge the Traditional Owners as the Custodians of this land. Tune in to Care is brought to you by Wellways Carer Gateway. Carer Gateway is an Australian Government initiative providing free services and support for carers. My name is Adrian Plitzco.
Carer – 00:01:03: There’s a world of difference between a city-based service and a regional service. And unless you have lived experience of a regional area and the stresses involved in living in that area, and then on top of that, caring for somebody, you don’t quite have an understanding of how difficult that is.
Carer – 00:01:26: I guess being a carer personally, it’s draining. It’s hard, it’s draining. Juggling school, sports, appointments. A husband that works, that does travel for work, he travels out twice a month, and I have to be mum and dad at home. It’s draining.
Adrian Plitzco – 00:01:51: Caring for a loved one in a rural and regional area is challenging simply because of limited resources, isolation, and often technical difficulties in communication. They all clearly have an impact on carers and can lead to a significant emotional and physical toll of caregiving, as we will hear in a moment from Dawn and Julianne, both are carers in a rural and regional areas, such as outback Queensland. Later on, I’ll also welcome two experts exploring the challenges and solutions in providing carer support in those areas. Before we come to the conversation with Dawn and Julianne, I need to point out that besides the carers and the support services, also our podcast is challenged by the limited communication options. Because, to establish a phone connection with Dawn that actually works required a lot of patience. After all, we managed to have her, so to speak, on the line. Not at the best quality though, but let’s hope the connection will at least hold through the conversation. Dawn and Julianne, welcome to the podcast and I straight away begin with you. Dawn, please tell us where you live and who you care for.
Dawn (Carer) – 00:03:12: I’m from Isisford, which is about 130 kilometres south of Longreach. We are situated on the Baku River. We’re just a small-town population of about 90, so services aren’t great. My daughter was born with hydrocephalus. It was just a to and fro to the Royal Brisbane Hospital for different surgeries. For many, many years, I received no help whatsoever. After I lost my husband, I eventually applied for NDIS for my daughter, which I was rejected four times. On the fourth year, I had a nurse navigator come on board who then helped me get into the system, which has been marvellous.
Adrian Plitzco – 00:04:01: Thank you, Dawn. And now to Julianne. Julianne, please tell us more about you. You are caring for four children, is that right?
Julianne (Carer) – 00:04:09: I originally come from Camooweal. I had my daughter at a young age, then I had four other kids. Then I raised a lot of kids with them too at a young age and I worked with help for a while. Then I’ve got this little boy, child safety handed me this little boy. He had ADHD I think it is. That’s how they say I never had somewhat problem with this really, young fella growing him up. Now he’s 20. I still got to, you know, keep him and try and keep, talk to him all the time and tell him what’s right and wrong, even though he’s 20 years of age. But not only that, I’ve got my three grandchildren in my care. Little ones, well, 11, 10, and 6. So, I take care of them as well. Sometimes it’s hard. I had to move from Camooweal here to find the service, being diagnosed by the Royal Flying Doctor.
Julianne (Carer) – 00:05:10: So, I had to move in here for him, because you can’t just get him in these little places, little towns, when you are in here. That’s why I say to people, you Mount Isa’s, you got people just knock on your door, you got ’em standing at your front door. But out in these little remote places, you don’t get help. You try and get help and you, you can’t get them. I find it very hard, you know, no one don’t come. I go through a lot of things, and I try and be strong. Sometimes it pulls me down, but you got to keep going. It’s very hard because you look for help sometimes and with other service “we can’t see you till next week or next month”.
Adrian Plitzco – 00:05:51: You said that you’d tell yourself to keep going. How do you keep going?
Julianne (Carer) – 00:05:55: I find things to do. I find things to do. I muck around in the house, you know, or read or listen to music sometimes to keep me going. If I don’t, I just feel rotten and down and out or go to friend’s place, you know, go to other people’s home and have a yarn and have a laugh to keep yourself happy. I don’t know about Dawn. That’s what I do, you know, in little towns, everyone knows everyone.
Adrian Plitzco – 00:06:27: Dawn, how is that for you? Do you see yourself in what Julianne described? What are the challenges for you caring for your daughter in a remote place?
Dawn (Carer) – 00:06:36: Yes, it is. I’m hearing Julianne’s and even as a carer for these, these young ones, because of the, the small numbers, the social side of this is very hard for them. I’m hearing Julianne with the mental side of this. I’ve just come through a pretty bad weekend. It’s certainly tough. It is tough. I don’t go to people’s places. I find it very hard for us to leave our own house yard. This is our piece of paradise, we battle on here. I’m lucky in one way that I’m a very keen photographer. We hop in the car with our camera. That’s how most bad afternoons are spent. No, it’s tough. It’s tough. And Julianne, I don’t know if you are on your own, but we used to share this, but now it’s a battle on my own. And on Christmas, 2002, Christmas day I had a stroke, a spine stroke, which has really affected my mobility. So, what I used to do so much for Lois now takes 10 times longer, but we have to do it together. Yeah.
Julianne (Carer) – 00:07:53: Sometimes you ask services here and they tell you, “well, I’m busy this week. You know, we are full this week. We can’t see you till this other date”. They’ll give you another date later in the month. And I said, I’ve got to just keep going on the way I’m going because we’re not getting any support and we’re getting older, and no one cares about us. But we still have to play a role of mother to our grandchildren and to our nephew and that, they always looking for my support. I said, you know, it’s too much for me sometimes. And I tell ’em, we should all just pack up and go bush because when they’re out bush, they just go and do their thing. And when they’re in town, they’re too busy, distracted to other things. When you take ’em in the bush, it’s different. It’s hard sometimes and nobody come and ask you, are you okay?
Dawn (Carer) – 00:08:47: That’s right, that’s right. Out of sight, out of mind Julianne. I have a few that are there if I need them. Yeah, no, we just, we just live on here. You know, I do find it, to be fair, I do find it very, very hard to ask for help because I’ve been a very independent person.
Julianne (Carer) – 00:09:10: Yeah, we get support from remote health mob, but other service out there, you know, like mental health is alright too with that little fella. But a lot of time it’s hard like from other services, remote health is real good. They support me and come and get me, have a yarn and they would talk about things and how I feel and Christoph from Carer Counselling, talk to him when, when he comes, which is good. Give me a bit of relief sometimes, but sometimes it’s hard for me to get around things in my head.
Adrian Plitzco – 00:09:49: But generally receiving that bit of support, does it make your role as a carer somehow easier? Does it help you in some way?
Dawn (Carer) – 00:09:57: Yeah, it does, in some ways it does and sometimes I get weak and looking for something else to somebody else to talk to. I just get out of my house and you know, go away and I say I’ll go and have a chat with someone just with ladies and we just talk around things and have a laugh and a joke when I’m feeling down and out, and I feel happy. I keep myself happy by doing things, like I say, talking to other people. But sometimes hard you can’t go because you got these little one too and you stay at home with them and do things with them. Make them happy too you know. I try and be happy for them. Sometimes they’ll ask too, them little ones “You all, right?”. You know, I said, yeah, they must see that change with me sometimes.
Adrian Plitzco – 00:10:51: Can you take us through of how it happened that you finally got some support from Wellways Carer Gateway?
Julianne (Carer) – 00:10:57: Through Jannah, I met Jannah, then we started talking about things and ever since Jannah’s been come talking to me and taking me out and doing things and we’re happy all the time.
Adrian Plitzco – 00:11:09: Do you know any other carer who is in a similar situation like you?
Julianne (Carer) – 00:11:14: My sister, she’s a single mother. She lost her partner, but she lives, she went back to now she’s been through a lot, and I’ve been through a lot with her. Two lost a baby from her daughter’s and one that girls lost her partner and her baby. It was, and we’re trying to support one another, especially the girls. Two of her girls lost babies. It wasn’t real good and we only lost a brother last year. It was hard trying to tackle all the problem, you know.
Adrian Plitzco – 00:11:51: Dawn, could you tell us again what you think is a different challenge to someone living in a big city like Brisbane compared to your challenge living in a remote area?
Dawn (Carer) – 00:12:03: One of the challenges here is we have a doctor once a week to….
Adrian Plitzco – 00:12:13: And now Dawn is gone again. We had lost her in between and I was hoping that she will come back, which she did. But the connection unfortunately has failed now, and this undoubtedly sheds some light onto the challenges support services are confronted with when they try to provide support to carers like Dawn living in a remote area. That means Julianne, it’s time for me to say goodbye to you. Thank you for your time. We had more luck with the connection to where you are. Thanks again.
Julianne (Carer) – 00:12:48: That’s okay Adrian. Nice meeting you and nice talking to you.
Adrian Plitzco – 00:13:04: Joining me now are our two experts as always. I’m saying hello to Lou Faulkner, General Manager of Carer Gateway Services at Wellways.
Louise Faulkner – 00:13:14: Hi Adrian.
Adrian Plitzco – 00:13:15: And also, to Jannah Cruden. She’s the Rural and Remote Strategy Care Support Officer at North and West Remote Health.
Jannah Cruden – 00:13:24: Hello Adrian.
Adrian Plitzco – 00:13:26: We just heard Dawn and Julianne and, unfortunately as we heard, Dawn got cut off abruptly and brutally. Can you say this reflects the difficulties and challenges services in rural and regional areas are confronted with?
Jannah Cruden – 00:13:43: I think when we’re looking at regional areas, you’re getting those regional technical difficulties as well.
Louise Faulkner – 00:13:50: I would say the same. Yeah, we experience that very, very regularly and you might set up a, you know, a telehealth conversation or a maybe even an online group with some carers, but things don’t always go to plan.
Adrian Plitzco – 00:14:02: So I can imagine that carers in regional areas feel even more isolated than someone in a metropolitan area, in a populated area.
Jannah Cruden – 00:14:12: Oh for sure, for sure.
Adrian Plitzco – 00:14:14: How do you address that?
Louise Faulkner – 00:14:16: I think what you do incredibly well, Jannah, is put yourself, like North and West Remote Health are so familiar in working in these regional areas that you just feel incredibly comfortable to go up and have relationships with people. So, I’m sure sometimes you know, if telehealth is down for a period of time, you guys may head out and do a bit of a road trip or something, pop into people’s houses when you’re going past unexpected. Is that kind of the way it works?
Jannah Cruden – 00:14:43: I’ll tell you, if there’s one thing that I am comfortable with now is showing up to people’s houses, rocking up on their doorstep because 9 times out of 10, especially when I’m trying to organise groups and events in advance, no one’s answering my phone. It is a lot easier to just go to their houses and those communities where our carers do have family and friends, there are huge chances that there are other houses. So even just trying to pick people up for in-person peer support group, what could be a 10-to-15-minute car ride ends up being 40 minutes cause we’re stopping at every house down the street. So definitely comfortable with that.
Adrian Plitzco – 00:15:30: What I so far have learned that for carers it’s really important and crucial to participate in peer support groups because they can share their experiences, and they find people that actually go through the same thing and have an understanding for them. They don’t have to explain, they can just be themselves in regional areas, probably you don’t have peer support groups. Let’s take Dawn as an example, she lives in a township that has about 90 people, population of 90. Is there a peer support group there? I doubt.
Jannah Cruden – 00:16:03: Not that I’m aware of currently. No. I know that in that space they are trying to start up online in-person peer support groups. But with the access to technology there and yeah, it’s still a huge barrier that they’re figuring out how to connect carers like Dawn with other people. Whether that’s in her own community or even just the surrounding communities.
Adrian Plitzco – 00:16:25: So what’s the alternative service you would provide if you want to have something that is of similar value, like a peer support group?
Louise Faulkner – 00:16:33: I can probably share a little bit about some of the carers that we hear from that live in really regional areas that we don’t necessarily have an opportunity to work one-on-one with or do a group with. So quite often people will describe their community as their place. Like this community looks after themselves, they’re very resourceful, incredibly used to stepping up when someone needs support. You know, we quite often hear “people give me the shirt off their back”. So, I think communities are incredibly resourceful and sometimes I wonder if it’s not so much about services like ours, Jannah, going into places and delivering a service, but more the community letting us know what they need or how we can provide a little bit of wraparound support but leaves them to do their thing as well, cause they do it incredibly well. You shared a really beautiful story with us just before this Jannah, about Dawn and Julianne maybe forming their own.
Jannah Cruden – 00:17:23: Yes. They’ve decided that they’re friends and it comes back to…I love how you mentioned the resourcefulness and….
Adrian Plitzco – 00:17:31: Let me stop you here. How far apart do they live? Julianne and Dawn?
Jannah Cruden – 00:17:36: Easily a thousand kilometres apart.
Adrian Plitzco – 00:17:37: Yeah
Jannah Cruden – 00:17:38: Easily, without a doubt. Those natural supports in the smaller communities, even the smaller regional communities, carer or not, there’s still like, yeah really strong bonds when it comes to helping one another out and regardless of you know, their own personal journeys, again caring or not lived experience and really understanding each other better than we do a lot of the times, is just invaluable, and exactly, we just have to be the sideline supporters sometimes and just support what we can and help facilitate those relationships.
Adrian Plitzco – 00:18:15: You said you go door knocking more or less? Yeah. Yeah. So, you just go to the carers, or you go to the community as well?
Jannah Cruden – 00:18:25: Everyone all, all over. Yeah. A lot of door knocking with carers. It is a lot easier with carers that we know. I recently went on a trip when I went to see the local tribe of the area who had their own service building based there. They were really excited because a big thing is consistency, I guess is showing up, saying you’re going to do something and coming back and actually doing it. So, when I went to this tribal office, they already had a list for me and the handover was as simple as “go to this house and tell them I sent you”. And that’s what I did for the whole afternoon. I went to these houses, and I said, “so and so sent me, I’m the carer support person for this area”. And that connection just flourished because they had so much trust in that local person who’d put their name forward. People I’d never met before, even in passing.
Louise Faulkner – 00:19:18: I was just thinking Jannah, when I kind of got this image of you walking through these regional towns parking your car and then walking through and door knocking. And I’m wondering when you open that door, is it quite often that you find yourself engaging or talking with more than one carer?
Jannah Cruden – 00:19:33: Oh, for sure
Louise Faulkner – 00:19:35: In the one home?
Jannah Cruden – 00:19:35: Yeah, definitely, definitely. And that is the beauty I guess when we, even in these regional towns, when we look at kinship carers, so Julianne’s case for example, although I gu ess book wise, she’s a carer for her grandson, she’s a carer for the community and in that home, even her home alone, we were able to identify she has, you know, a few health things of her own. So, we found people who are supporting her to help her support other people. And when we are looking at textbook caring and kinship caring, we do end up picking up so many people in that one home because they all have their own parts to play, especially when you are dealing with limited access to other services, they’re picking that ball up where they need to. So, yeah.
Adrian Plitzco – 00:20:24: Julianne is indigenous, so her community is probably different to a community in an Anglo-Saxon area.
Jannah Cruden – 00:20:32: She spoke about being from remote community. So, she comes from Camooweal, which is north of Mount Isa towards the Northern Territory border. Camooweal is a two-hour drive, it’s actually classed as a suburb of Mount Isa. But when you look at everything that Mount Isa itself has access to, and you could almost say Camooweal is a remote isolated community, but it’s a suburb of this big town with a hospital and they’re using a doctor plane. She had a really good point about taking the young ones out bush to clear their mind and they think differently in those sort of outdoors environments as opposed to the distractions of the town. Julianne is really interesting to me because, although she is an Elder and she’s from Camooweal and she’s from the small community and has done a lot of work to bridge the gap as it is a part of Mount Isa, she’s still most definitely an Elder for the Mount Isa community and very well connected because she makes family, she makes friends and the communities really tight there as well.
Adrian Plitzco – 00:21:41: Compared to a carer in a metropolitan area, I mean they all have an emotional and physical toll they have to deal with. To people like Julianne and Dawn living in regional areas, is the cost even higher?
Jannah Cruden – 00:21:55: Oh, for sure. I did want to mention, I was listening to Dawn, and she brought up initially her care recipient not meeting access for NDIS. So, we’re looking at a number of different services, different, you know, my Aged Care, NDIS, a lot of different supports and organisations that make up the caring role, essentially what it is. And that’s what we love is being able to care for the people who are caring for someone who already is linked in with a number of services, but in these cases, access to those services is just as limited as ours sometimes. So, they’re still battling through trying to get the best support for their person. Sometimes it can be really difficult for us to support carers like Julianne or Dawn when their whole focus is trying to get support for the care recipient. I’d imagine that, you know, it’s just as difficult for all the other organisations as us and that’s why we keep very strong connections with all the local services, local stakeholders, local organisations because yeah, the access to everything that they need to be able to care effectively, beyond us, is just so limited sometimes.
Louise Faulkner – 00:23:11: I think Dawn said a bit earlier in the piece as well that she had experienced her own health concerns with the stroke back in the early 2000’s. As she was speaking and as she was saying that I was wondering what supports she had in place for herself and for her daughter when that happened. Because that must have been so scary to be in a small town of 90 people with really limited supports and not, you know, not necessarily asking for help, cause she mentioned that she finds it quite hard to ask for help. So, I got really curious as to what happened.
Jannah Cruden – 00:23:41: I do want to add onto that, that when we’re dealing with towns, especially the size of where Dawn is from, and we talk about that pride and that independence and that shame to ask for help. Which is a conversation that we actually have a lot with our carers is we have a number of cars in our fleet, some of them aren’t wrapped but sometimes I know I do drive around in this big bus that just screams NWRH and a lot of carers actually find that quite discouraging when it’s parked outside their house. And a lot of people are knowing that they’re accessing support, and small towns talk, word travels fast, it can actually pull our carers back even more from accessing services. It’s a double-sided thing. Sometimes a lot of our carers will see us across the road and go, “okay cool, they’re getting support, that means that service is here, we are seeing them, they’re doing it, I want a piece of that”. And then some carers might go, “oh, I don’t know if I want everyone seeing that I’m accessing services”. And I know that we will speak more about it when we speak about remote communities, as Julianne mentioned with her grandson’s diagnosis, not completely understanding what that meant or what to do with that diagnosis. And I think health literacy is a huge barrier even in these regional towns where there are more access to hospital and health services, really understanding the diagnosis or people there to support our carers to understand the diagnosis.
Louise Faulkner – 00:25:16: I wholeheartedly agree and I guess to add to that a little bit as well is, is carers will quite often, you’ll quite often hear us talk about being that person who supports our loved one or our child or our sibling or whoever that may be for us. And we need to ask the questions, and we need to know what’s going on in their lives. But the health practitioner will quite often just speak to them and acknowledge them. So I think that’s that piece around being a little bit more holistic and including, you know, all of the people who are caring in that healthcare plan or the, or the diagnosis or whatever that looks like for a person so we can provide the best support.
Jannah Cruden – 00:25:50: And even, as you know, care or support service, I know even myself can only give so much insight as to what I know. And I think that’s where when we are able to have successful in-person peer support groups and we are using lived experience and other carers who do know and do understand and can give a bit more than I can, it’s really valuable when possible.
Adrian Plitzco – 00:26:16: Jannah Cruden, Rural and Remote Strategy Carer Support Officer, North and West Remote Health. Thank you very much for coming in and being part of the podcast today.
Jannah Cruden – 00:26:25: Thank you. It’s honour to be here.
Adrian Plitzco – 00:26:27: And also, a big thank you to Louise Faulkner, General Manager of Carer Gateway Services at Wellways.
Louise Faulkner – 00:26:33: Thank you. It’s been a pleasure
Adrian Plitzco – 00:26:40: For an in depth understanding and more enriching conversation about caregiving, listen to the next episode of Tune in to Care – No two carers are the same. More so, because we will be going even further away to a remote and Indigenous community on Mornington Island. The challenges of caregiving there are unique and again, different to all the other caring communities we heard of so far. Tune in to Care is a podcast supported by Carer Gateway an Australian Government initiative. If you are a carer in need of support, call Wellways Carer Gateway on 1800 422 737 and make sure you don’t miss out on hearing more incredible carer stories. Subscribe to the podcast on your favourite podcast platform or streaming service. My name is Adrian Plitzco. Thank you for listening and I’m looking forward to meeting you again in the next episode.