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.
Adrian Plitzco – 00:01:04: Throughout this podcast, we were in the company of remarkable people, carers. Carers who shared their stories with us. Every single story is unique and personal, and so is their caring role, either challenged by a physical location or the mental state they find themselves in. We heard Liz and Kim, how they navigate the challenges of caring for elderly loved ones. Diana and Sandra gave us an insight into the world of mental health care. We heard Julia and Adam, both young carers, looking after a family member while balancing school responsibilities. Dawn and Julianne, living and caring in a regional or rural area, struggling to find sufficient support services. And finally, Gloria and Mossiearna, Indigenous caregivers giving the best care they can in a remote place like Mornington Island in the Gulf of Carpentaria. In this bonus episode of Tune in to Care, we will reflect on what we have experienced ourselves throughout the podcast. That is myself and Lou Faulkner, the General Manager of Wellways Carer Gateway Services. And all I say is, hello and welcome Lou.
Louise Faulkner – 00:02:19: Hi Adrian. It’s lovely to be back.
Adrian Plitzco – 00:02:21: Lou, you also played an integral role in the podcast, being the one expert who was actually in every single episode. Now let’s have a brief look at some of the carer’s experiences.
Adrian Plitzco – 00:02:36: In the episode ‘Caring for Aging Family Members’, which was, besides the introduction episode, our first one, we heard from Kim, a single mother who cared for her mother until her passing and now takes care of her father who has dementia. We also spoke to Liz, a 78-year-old carer who has been caring for her husband since he was 32, following his diagnosis with multiple chemical poisoning. And over the years, her role evolved to caring for aging parents and children. And all I can see here is actually a lifelong commitment to the caregiving role. Now let’s hear what Liz had to say.
Liz (Carer) – 00:03:24: I wouldn’t be here now if I hadn’t have come along. And I had hit rock bottom when I decided to ask my friend about the support group, she told me about. And without it, I don’t think I’d be here.
Adrian Plitzco – 00:03:38: I can only recommend listening to the whole episode again and witness how Liz, despite her past experiences, actually comes across as a strong person with a positive outlook of life. And it is quite obvious to me that the support she received played a crucial role. Am I right here, Lou, or what do you think?
Louise Faulkner – 00:04:00: So, during the podcast, Liz did share with us that she had experienced a crisis point. So, a moment of extreme difficulty and overwhelm. She reached out for advice and was introduced to a support group and it sounds like this group was able to provide her with some tools and an understanding to overcome some of the challenges that she was experiencing. I think one of the greatest takeaways from Liz was that it’s okay to admit when we’re struggling and seeking support, reaching out to others whether friends, family or support groups can really be a significant step towards healing. And Liz has had an extensive caring role over the, wanna say, decades. So, it’s absolutely no doubt that maybe, you know, some support would be incredibly helpful.
Adrian Plitzco – 00:04:41: And we know that Liz being 70 years old, is aging herself, which is an additional challenge.
Louise Faulkner – 00:04:48: Absolutely and there is actually a survey that, a national survey that takes place every year, the Carer Wellbeing Survey. And one of the things that have come back from it, or was glaringly obvious from a carer’s perspective, was carer burnout and stress. So, a significant portion of carers reported high levels of stress and emotional burnout. And over 65% of respondents indicated that they struggle to manage the emotional, and especially the physical, demands of the caring role. And it leads to feelings of overwhelm and exhaustion. And it sounds like that’s where Liz was when she found this support group.
Adrian Plitzco – 00:05:21: Well, what we haven’t looked at, is actually the challenge of caring for someone with dementia. And that’s in Kim’s case, she cares for her father who lives with dementia. If you look after your loved one who lives with dementia, in my eyes, could be even more challenging because it’s not that person anymore. You know, the person changes and they might then not recognise you anymore. That leads to even more isolation because a caring role is being in isolation, often it goes sort of hand in hand.
Louise Faulkner – 00:05:53: Absolutely, I wholeheartedly agree. And I think as well, unless you are going through that experience or a very similar experience, it can be hard for people to understand. And so, I think that might isolate people further. And we also know as the disease progresses as well, that you know, the person that you’re caring for will require a little bit more support and certainly, you know, a bit more of your attention. So yes, you would definitely, I would assume, become isolated from friends, family, and community organisations.
Adrian Plitzco – 00:06:28: So, no two carers are the same. That’s something we all learn throughout the episodes. Every role is unique, but often we find similarities and we will get to that more and more. We actually go forward in our list of episodes so that in the following episode we looked at the unique challenges of mental health caring. And they were, Sandra, who cares for her grandchildren with mental health challenges and Diana, she cares for her son with severe autism while managing her own ADHD.
Diana (Carer) – 00:07:00: I feel a lot more positive because I have other people now that I know that are in the same position as me.
Adrian Plitzco – 00:07:07: What Diana means, I think, is that she, as a neurodiverse person herself, has found a support group in which she feels comfortable. Can you fill us in, how it actually came to that?
Louise Faulkner – 00:07:21: Yes, I remember Diana saying that she did attend one in person peer support group, and it probably wasn’t for her. She did mention there was nothing that particularly stood out as being wrong, there was just a lack of, there just wasn’t a feeling of comfortability. She went on, or Diana went on, to attend another group and just instantly felt a connection with people. And I think she spoke really beautifully about connecting to people who understand your situation because they can provide significant emotional relief. And a supportive community helps in so many ways. It helps alleviate stress, reduce feelings of isolation, and just generally improves your overall wellbeing. I think as well, we can underestimate the power of a support group. So, a community of people who may have something in common, they may have experienced something similar. To be able to sit in a space with people and feel like you’re genuinely being heard is incredibly powerful.
Adrian Plitzco – 00:08:19: I was very impressed to witness how the carers, how they lightened up in their speech, in their look when they talked about the support group. Like Diana as well, she struggled a long time to find the right one. And then finally she found it, and it made her content, if not happy.
Louise Faulkner – 00:08:39: Absolutely, and it’s so lovely when you witness a group of people together having a conversation. I was lucky enough to walk past a group the other day that was taking place at one of our offices here. And you know, the carers, they’re sitting around and they’re engaging in conversation. But the most powerful thing is when you have a carer that shares with another carer, a resource or a referral pathway or a great doctor they’ve been to or a fabulous yoga class. So, you’ve got this peer connection that someone facilitating a group or kind of like an expert can’t provide. It’s actually bringing in your community and then sharing what you know. But I think what’s equally important about support groups is the carer being able to contribute to that and give back. Because you know, research shows that when we contribute or we, you know, we maybe volunteer our time or we give back to a community, that feeling is palpable and that’s what increases our wellbeing, to be able to give back.
Adrian Plitzco – 00:09:44: Let’s go to episode four. The theme here was balancing life as a young carer. We explored the experiences of young carers like Julia and Adam and Julia is 22. She cares for her older sister who is diagnosed with severe intellectual disability. And on the other hand, we had 17-year-old Adam. He’s the primary caregiver for his father who’s compromised in his mobility due to a severe lower back condition.
Adam (Carer) – 00:10:17: I feel more comfortable knowing that I’m able to take care of my dad rather than someone that I wouldn’t know
Adrian Plitzco – 00:10:24: That was Adam. And here we have two different points I would like to reflect on. They’re young carers. They are faced with unique challenges of caring for a loved one while navigating their academic pressure like studying, going to school or applying for a job. And then Adam, he wouldn’t let anyone else, like perhaps a stranger, care for his father.
Louise Faulkner – 00:10:48: Adam spoke beautifully about, kind of, being able to support his father. It was a real, it sounded like it was a real, privilege to be able to do that. And I wonder as well, I came away from that episode thinking, you know, about young carers more broadly and wondering if you know when they are the primary carer or they are offering some of that support to the care recipient, if that actually gives them more of a sense of control over the situation. Because if you’re a young person and you are managing school and you’re managing, like you said, part-time jobs and friendships, maybe that caring role, that routine, that structure, that responsibility, maybe that’s the piece that grounds you and you know, supports you to be able to feel like you have a bit more control than maybe you do.
Adrian Plitzco – 00:11:31: Yeah but this is not only with young carers that they rather want to look after their loved ones themselves. That’s with mostly older carers, isn’t it?
Louise Faulkner – 00:11:40: Every person on the podcast and people we speak to more broadly have all expressed that, absolutely, while it can be challenging and you know, times can be difficult, they wouldn’t have it any other way. They want to be the primary carer for their person.
Adrian Plitzco – 00:11:55: They know them the best, they know the best, what they actually need. That’s what they can provide for them or trying to, at least.
Louise Faulkner – 00:12:02: It also gets us thinking a little bit too, doesn’t it, about, you know, people who don’t have someone to care for them in their lives and how they can navigate support. And I know that there are systems in place, you know, with My Aged Care and NDIS, but you have to be eligible for those. Yeah, it really does make me think about people who don’t have a person to advocate for them.
Adrian Plitzco – 00:12:24: Something that that sort of triggered a lot of thinking in me doing that episode was that the young carers came across, like Julia and Adam, came across as being very mature, more mature than any other at their age 17 or 22. When I think back when I was 17, I had no idea about the world, no idea about other people, but Adam and Julia, they both, they just seem to have it really together.
Louise Faulkner – 00:12:53: You know, these young people are incredibly articulate in navigating health systems and talking to schools about maybe what their responsibilities are or why they’re not able to attend something. So, I think you just become a little bit more worldly. The world probably isn’t so much just focused on yourself. And I think for young people maybe who aren’t in a caring role, they might have that luxury, but for young carers, their level of responsibility is different. So yeah, maybe they are growing up just a little bit quicker, probably exposed to a bit more too.
Adrian Plitzco – 00:13:25: Julia and Adam definitely left an impression on me. To get the full picture of their stories, I strongly recommend listening to that episode again.
Adrian Plitzco – 00:13:39: Episode five and another unique challenge in caregiving we looked at. So, living outside of populated areas like big cities, while caring for a loved one was sort of the keynote in that episode, living in rural and regional areas such as outback Queensland. Dawn, she lives in a township with a population of about 90 while caring for her daughter. And Julianne cares for her nephew outside of Mount Isa. And both are faced with limited access to services.
Julianne (Carer) – 00:14:14: You try and get help, and 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 gotta keep going. It’s very hard because you look for help sometime and with other service “we can’t see you till next week or next month”.
Adrian Plitzco – 00:14:39: That was Julianne, and the challenges of caring for a loved one in a regional and rural area.
Louise Faulkner – 00:14:46: Yeah, I was, I remember thinking about Julianne afterwards because she, it definitely sounded like she had experienced a lot of frustrations and, she did kind of, you know, express that she was disheartened that she hadn’t easily been able to attain the supports that she would’ve liked from other services and people. And there is a need for more accessible and timely support services for carers in regional and rural areas. We also hear, you know, the Carer Wellbeing Survey, carers talked about a need for flexible and accessible services. So, they highlighted this need with many expressing frustration at the limited availability of, in particular, after-hours support and services that accommodated their caregiving schedules. But yeah, I could appreciate Julianne’s frustration. It was funny, wasn’t it? You could hear it in her voice and then she would laugh it off and say, but you know, I’m alright. And I think that’s what happens with the caring role too. You end up just passing it off and saying, “oh, she’ll be right”. So, you know, you might have a bit of a complaint or whatever or have your challenge and then you just keep going ’cause that’s what you do.
Adrian Plitzco – 00:15:49: But still, just keep going is not enough I think, because you need something that does give you support. Now in Julianne’s case, she has a community that supports her. That’s what I sort of did take away from this podcast, that it is important to have someone around you either in a support group with other carers that sort of share same circumstances, same experiences or hurdles with you, or a community that just makes you feel home.
Louise Faulkner – 00:16:18: I agree. A community that makes you feel safe. And just having, you know, people in your life that can check in on you. Quite often, you know, with carers, you know, a number of them will talk to neglecting their own health needs, and many carers face their own physical health challenges, such as chronic pain or fatigue. And that’s due to the demands of the caring role. So, to attend a group and have someone check on you as a person and say, “hey, did you end up going to the dentist?”. You know, “I can see you hobbling, have you been to the GP?”. That’s really important too, that makes you feel valued and like someone’s looking out for you.
Adrian Plitzco – 00:17:01: In the last episode we even went further away to an Indigenous community in a remote area and that was Mornington Island, also known as Kunhanhaa in the Gulf of Carpentaria. To give you an idea, it is about 2,300 kilometers away from Sydney. We spoke to Gloria, a remote carer, deeply rooted in her community. She cares for her older sister. And we spoke to Mossiearna on Mornington Island. She is a single mother to her five year old daughter who’s diagnosed with a lung disease.
Mossiearna – 00:17:36: Oh, we just, just sit down with each other and like have a conversation and you know, like they say what we’re going through and we will all like, they’re probably going through the same thing and understanding each other and help each other out.
Adrian Plitzco – 00:17:51: And here again, the key word ‘struggle for support and community resourcefulness’ on Mossiearna, she even extends her caring nature to the elderly in her community, assisting them with daily tasks and providing social support.
Louise Faulkner – 00:18:08: I thought the way that Mossiearna spoke was really encouraging. She was, by sharing her experience, she was really supporting others to seek out support networks and connect with people who have a similar experience. She even went as far as to say connect with anyone. I thought the moral to her story was really quite beautiful. And I think too, it showed that you can be in a small place, you just need a couple of people, right? You don’t have to have these enormous communities around you. I had the absolute privilege last month of meeting Gloria in person. So, she was in Brisbane down from Mornington Island. And again, talking about her caring role and I did sort of, you know, ask, “is it quite challenging to take time away from the caring role, there’s a lot to organise and a lot to do”. And she just said she’ll always make that time because you’ve got to share your information with other people. Other people need to know that, you know, maybe services aren’t available, or maybe more can be done, or they can just walk down the road and have a chat with someone. And her message again was, was really beautiful. But yeah, Mossiearna and Gloria, well actually everyone throughout the podcast, the connection piece has been enormous, hasn’t it? Just the connecting to others feeling like you belong. And, and I think another thing that came through was feeling like you’re not alone. Like you’re not the only one who’s going through a challenging situation. And not that we want others to, but sometimes it’s nice when people recognise, you know, that it might be a little bit more difficult.
Adrian Plitzco – 00:19:40: Is that sort of the main purpose of your organisation? To provide, the service you provide, is just make people feel not to be alone.
Louise Faulkner – 00:19:51: I think that’s a huge part of it. I think the other part would be reducing stigma around the caring role. So, you know, shouting from the rooftops that, you know, there are hundreds and thousands of carers across Australia and hundreds of thousands in Queensland alone. And just acknowledging, you know, that this is unpaid work majority of the time. And it’s done out of a sense of love and care for other people. Yeah, I think carers are incredibly selfless, quite remarkable people. But probably the main thing or the main reason for the in-person peer support groups is absolutely to not be alone and, and to have that connection, but also to support people to sustain in the caring role. So, we know that, you know, carers are going to remain caring for people regardless. So how can we support to make that more sustainable in the long run.
Adrian Plitzco – 00:20:54: Lou, I did hear you saying once that you learn every day something about your job or about caring. And I then asked myself too, what have I learned? I mean, I don’t have that experience that you have, but this is my second season of the podcast Tune in to Care. I learned a lot last year when we did the first season. And I even learned more I think this year when we talked about that now the extent that carers find comfort in support groups, and mainly also because they don’t have to explain themselves in a group. They don’t have to, they feel being understood and they’re not looking for pitifulness, they just want to have empathy. I think that’s about it, or just being themselves.
Adrian Plitzco – 00:21:44: And that tells me, or I’m asking myself then how do I react towards a carer when I learn about their lives, their experiences, what they are going through. And I know for sure now that I never ever should tell them that I couldn’t do it, that I think they are so great. And if I was in that situation, I couldn’t do it. That’s the most wrong thing you can say because it’s of no help to them. All I can do is demonstrate empathy, not only show empathy to carers, to everybody in this world, ’cause they have their own life, they have their own destiny, they have their own experiences. I have mine, and all we can do is accept what we are. So that’s what I take away from this episode. I don’t know about you, I mean, you are confronted with all these, sometimes amazing, stories and really sad stories every day. So, what did you learn?
Louise Faulkner – 00:22:52: I think you’ve summed that up beautifully, Adrian. Probably the greatest thing I’ve learned in this role is that no two carers have the same experience or the same journey regardless of how similar they might look. So, you can never go into a conversation with a carer and say, “oh, I met such and such and they’re in a very similar situation”, because that’s not fair where there are so many other aspects to a person’s life than the caring role. I think as well, something that has become very, very clear to myself is that carers are very, very smart people. They have to navigate the most incredible systems sometimes plus advocate and jump through hoops just to get support services or sometimes even be recognised in the caring role at all. So, you have a very dedicated and very clever group of people. And when people come together and have a willingness for change, nothing will usually stop them.
Adrian Plitzco – 00:23:58: Christmas is coming up soon, which means holiday season, a lot of people spend their times with their family in a happy environment or go away, which means then carers are probably even more isolated. And I think it’s important to remind these people that it is even more important to reach out for help.
Louise Faulkner – 00:24:18: Yes, I agree, and it is usually also that period as well, isn’t it, where services and service offerings tend to slow down a little bit. We’re incredibly mindful of that and the teams have started, or they’ve planned groups months ago kind of, you know, preparing for end of year and getting ready for Christmas and just, again, to keep that connection piece alive for people. I met a gentleman the other day, he has been in his caring role for 32 years for his wife. And we had a carer event, it was a beautiful gala dinner. So, we all dressed up and headed into the city and had this amazing evening and he just said he hasn’t been able to work for 20 years. His caring role is 24/ 7, and he just said, “this is my end of year Christmas party”. He said, “you know how everyone else goes to work and they have an end of year function?”. He’s like, “this is my end of year function”. He said, “but I don’t get annual leave, and I don’t get, you know, sick leave”. And I think that’s just a reminder that the, the caring role doesn’t always switch off for people. And it’s nice to stop and acknowledge and that’s what the end of year and Christmas is all about, isn’t it? It’s about, you know, it’s about community and it’s about connection and appreciating others.
Adrian Plitzco – 00:25:28: Now we come to an end of this bonus episode, Lou, and you said it a few times, I said it probably a couple of times, no two carers are the same. Some might care for their wife or husband who lives with dementia. Or you might care for your daughter or your son who’s affected by mental health issues. You might be young and care for your siblings or your father, or you might live in a regional, rural, or remote area and struggle with limited access to support services while caring for a loved one. And so, listeners out there, if you think you might be a carer, then you are definitely and actually a carer. And I invite you to find out more about receiving free support as a carer, either for yourself or a friend. It’s only a phone call away. Simply dial 1800 422 737. Again, 1800 422 737, and the friendly people at Wellways Carer Gateway that definitely will be listening to you. Tune in to Care is a podcast supported by Carer Gateway, an Australian Government initiative. And all I can say here is thank you for listening and please tell your family and your friends about the podcast and remember to subscribe to the podcast on your favourite podcast platform or streaming service. Louise Faulkner, General Manager at Wellways Carer Gateway services, you deserve a big thank you here.
Louise Faulkner – 00:27:05: Thank you, Adrian. It’s been wonderful.
Adrian Plitzco – 00:27:07: It was great to talk to you. And also, a very big thank you to all the carers, Kim, Liz, Diana, Sandra, Julia, Adam, Dawn, Julianne, Gloria and Mossiearna. Thank you for letting us in into your lives as caregivers for your loved ones. My name is Adrian Plitzco. Take care and stay well.