Transcript
Adrian 00:00:02: Hello and welcome to Tune in to care, a podcast that takes us on caring journeys of five different people who care for a loved one, people who didn’t know they are an unpaid carer, and who have only found out later that there is support out there for them. Free and easily accessible. 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 in Australian government initiative, providing free services and support for carers. And my name is Adrian Plitzco.
Adrian 00:00:50: Lena, Maya, Mary George, and Luna are carers who will once more share their caring journey in this third episode of Tune in to care. They will answer the question how their family and friends reacted when they reached out for help, and what their support network looked like before they became aware that they are indeed unpaid carers. Later on, I will have the pleasure again to welcome Georgie Sawyer on our podcast. And she will reflect on her personal experience as a carer, but also on her professional experience as an in-person peer support facilitator at Wellways Carer Gateway. And she will tell us why the ones closest to you aren’t always the best support.
Georgie 00:01:34: The idea of having a support service that’s outside of our family network, outside of our families, it’s sometimes a little bit more liberating.
Adrian 00:01:45: But first let’s ask Lena, Maya, Mary, George, and Luna, what kind of support they initially got before realising that they are more than just a friend or a relative, taking care of a loved one. And I can already give it away, in all cases there was no, to very little support.
Lena 00:02:05: No, no support before that it was just all me. I don’t, I’m the only daughter. I had a brother, he passed away. So it’s just really myself.
Mary 00:02:17: Support what support. Just over the phone from my friend, not much.
George 00:02:22: No one’s come up to me and said, you know, to look after him. It’s kind of just been, we, we’ve, we’ve done everything on, on our own, you know, it’s mainly my wife’s gone onto the internet to find out where we can get some help from, such as carers and that sort of thing, which we needed for Manny. And we, we, we’ve got, we’ve got some help through that, through there. We’ve been on to some seminars, which have, have helped a little bit.
Luna 00:02:56: So my family’s all estranged. They live interstate and I didn’t really have a support network of friends. I did initially when my son was very young. But as his disabilities started having more of an impact on him and more of an impact on me, I found the kind of people didn’t really understand. I kind of lost everyone through that process and just kind of had to muscle through it alone. I had like my, my partner and that was pretty much it.
Adrian 00:03:30: Asking for help is often the hardest step to take, but to then get a negative response or to be simply ignored, can set people back and lead to loneliness in some cases, creating a negative spiral. And others like Lena or George didn’t really have anyone to ask.
Lena 00:03:50: No, I don’t really, well, my friends are like my age, but they don’t know my dad, so they’re not really any kind of support there to help with my dad. Everything, all the paperwork, cleaning his house, it’s all me. I don’t know. I’m not that person to ask for help normally. Yeah, I don’t know. Maybe it’s the guilt or feeling It’s a failure again. Yeah. And I don’t, not only that, but I don’t wanna burden anybody else. You know, they got busy lives and I don’t, it’s, they got their own problems, so I don’t want trouble with nobody else.
George 00:04:24: No, my family’s over in New Zealand. They’re a long way from us. I think the way that my son was, and he was so, so on the go and so active, is that I, I don’t think that a a lot of the other, some of our friends wanted to get in, involved in it sort of thing. I think they thought too much, too much and didn’t wanna get involved. And try prob probably too, is to pry into, in, into what’s happening with Manny. You know, because he was, he, he was always on the go and, and getting into things, pulling things out of the drawers and stuff like that. I I, I, I don’t think they really want to know about or get involved. You know, some of the friends we’ve got, they, they, they’re not kind of not interested in kids that don’t behave themselves sort of thing. You know, it’s a, I think one of, one of the big problems with, with people who haven’t got autistic children don’t realise that it’s a disability.
Adrian 00:05:44: The sheer fact that you are caring for someone who’s different can make people feel uncomfortable, even the ones close to you. So after a few negative experiences, carers don’t bother to ask for help anymore. They just soldier on. Others like young carer Maya are worried to be the centre of attention. They don’t want their caring role to take over their whole life, even though it often does. And Maya has already learned how important it is to at least have that one person you can talk to.
Maya 00:06:18: No, not really, because they’re mainly, they were busy with their lives, so I wasn’t really gonna just ruin that, interfere that no, my friends really were just friends and we talk about life, but when I really wanna talk about my feelings, I think it’s best to go to one person. They would’ve understand it. But it’s easier just to talk to one person and not like a whole friend group. My friends don’t really know that I’m caring for my father. I’d like to keep it not a secret, just low. Like, not everyone needs to know. But yeah, if they were to know, like they wouldn’t be shocked. They would just be like, oh, okay, she’s a carer like that. They wouldn’t be upset. They wouldn’t be like that.
Adrian 00:07:08: Maya doesn’t like talking about her caring role with her friends much. Luna, on the other hand, did ask for help, but it turned out to be a wrong move.
Luna 00:07:19: Before my mother became estranged from me, I did ask her for support. So like taking him for periods of time so I could have a bit of time for myself and stuff like that. And she, she was not receptive to his diagnosis at all. She didn’t alter the way that she was acting or, you know, change and use any of the strategies that I, I told her were working for us. And it just, it ended up being quite, quite unhealthy really. With my friends it was, it was very similar. Like I, ’cause I had my son quite young, most of my friends were, you know, in that same kind of age bracket. I was only 18 when I gave birth. So my friends were all kind of in that same age bracket and they thought that it was, you know, oh wow, this cute baby. And then when the behaviours started showing up, they all kind of just dropped away because they didn’t understand. They didn’t know how to support me, how to support my son. And that, that was very challenging for me as well ’cause I, I’m quite a social person.
Adrian 00:08:30: Mary experienced a similar reaction from her family and friends because her son, as Mary describes it, has in the past shown a high level of aggression towards other people. Her family and friends stayed away and this drove her even more into isolation.
Mary 00:08:47: Like they heard, like not from me, like from say cousin or something. Like, he’s sick, he’s mentally ill. We don’t wanna go there, we don’t wanna visit. It just, I isolation, you know, you can’t evolve with them because you can’t make them come. Even my family, like, you don’t care much about the friend, but you need friend in your life. I love my friend and I lost most of them. They don’t wanna come and they don’t, you know, they don’t feel comfortable because in case he, he used to hate people. I don’t want this to come, I don’t want your friend here. You tell him everything, you talk about me, you know. So I lost most of them. But more important was my family. I was very sad. Sometime they can’t come visit me because of him. They withdraw from that thing, you know, it’s not like close anymore like before.
Adrian 00:09:51: As we heard before, Luna did make the move in the past and invited friends to take part in the caring journey. Their reactions were different, ranging from giving questionable advice to helpless comments or judgments.
Luna 00:10:06: Initially I did make that effort to try and kind of increase their understanding so they could, you know, remain in our lives. But it just, it just ended up being that all of our lives were kind of going in different directions and they just didn’t have the capacity to understand and provide any kind of support for me or my son, so it all kind of fell away. Offering advice, like most carers have heard it all, unless it’s from another carer, which, you know, can be quite insightful sometimes. But if someone that you are speaking to isn’t a carer, most of the time the advice they have to offer isn’t very insightful because they just don’t have the frame of reference. So asking what the carer needs would be way, way, way more supportive, you know, if they need a break, you know, offering that without making them feel guilty for it and going, you know, oh, you need to hurry back, you need to hurry back because, you know, I can’t handle this. I think one of the most unhelpful things to say to someone who is a carer is I don’t know how you do it. And that’s something that all carers have heard before. Oh, I don’t know how you do it. Oh, you do it all. Like, that’s, that’s amazing. Wow. And it’s like, well, a lot of carers wish they didn’t have to do it all. A lot of carers wish there was somebody to take over the reins sometimes, you know, because it, it, it isn’t always kind of sunshine and rainbows and, you know, happy therapy sessions and play therapy and stuff like that. You know, there’s a lot of tears, there’s a lot of frustration, there’s a lot of anger, there’s a lot of just everything really challenging emotions and hearing from someone, oh, I don’t know how you do it. It, it feels like it kind of trivialises the experience a little bit and makes you feel like, it makes you feel like very isolated because it’s like, yeah, no, of course. Like I have to do this. There’s no option. There’s nobody else. It’s just me. So I, I I have to and it can be, yeah, a very, very isolating statement. So it should be avoided at all costs.
Adrian 00:12:40: Now it is time to welcome Georgie Sawyer, our in-person peer support facilitator at Wellways Carer Gateway in Brisbane. Hello Georgie.
Georgie 00:12:49: Hello Adrian. Hello caring community.
Adrian 00:12:52: Did you ask your family or friends for help once you realised that you are a carer? That was the question we had asked Lena, Mary, George, Maya and Luna and the answer was loud and clear. There was not much help at all from people close to them. I wonder is that common to all of the carers who come to a support group at Wellways Carer Gateway for the first time? Do they more or less step out of a dark and isolated place?
Georgie 00:13:21: There’s a lot of personal lived experiences that, that people reflect on when they come to our support groups, our In-Person Peer Support Groups. But I guess what happens is, is there may be many, many different pathways to reach out to, but it’s whether that that service or that family member or that neighbour or that friend, it’s whether that pathway is available and accessible. And I guess for some of us carers we have a little bit of a fear that if we ask, it may be too much for someone or we may be overstepping a boundary or we may be overburdening people. We hear these common words expressed and what we know is that once they hear about Carer Gateway, they go, oh my gosh, I had no idea. Like I said the same thing, like I would’ve loved to have had a support service like Carer Gateway when I was younger. Like I think that the, the ability to be able to be empowered and in control of what pathway you wanna go through with Carer Gateway. But I also love that it’s just that it’s a gateway of support that opens up your world to the opportunities of the community connections that we can also make. So as a perfect example with my Yay Ya, my grandmother, you know, my whole family were caring for her in quite an acute moment of all her, her life living with dementia in the last quadrant of her life. And you know, not being able to have that support or having someone to talk to can be quite isolating and can at times lead to emotional fatigue that drain even physical fatigue. So the idea of having a support service that’s outside of our family network, outside of our families, it’s sometimes a little bit more liberating because, you know, we’re, we’re not met with, oh you’ll be okay. You know, chin up pip pip, you’ll be all right. Just, you know, it’s a bit hard now, but, you know, Shirley down the road could get through it and John across the road went through that. They live to see another day you’ll be all right. And then you go home and you’re, you’re like, oh my God, how did I, how did I get here again? I’m here on my own again. Whereas once you open the door to Carer Gateway, that is exactly what you’re opening the door to, pathways that you make a choice about what you wanna access, how you wanna access it, and then meeting that other end of where we’re not being told, well, this is what it looks like, but you can’t, you know, you can’t open it. Or you might have that shame that comes with it. The idea is, is that we have that lived experience to be able to say, Hey, we hear you, we see you. Where do you wanna go from here? What, what can our services do? Empower the person, the human, on a human level to no longer feel alone, but feel heard and empowered to take the next step with us at times by their side in the early days. And then when they’re ready and they’ve got that beautiful toolkit that I’ve, that I’ve spoken about earlier, when they’ve built upon their beautiful toolkit and they’ve got all these different, you know, accessibility points or they’ve built up their community network, that’s when they’re able to go out there and, and we feel as an individual and as a human ready to fight that other day, ready to face those acute moments, ready to be able to, you know, support our loved ones even though we’re frustrated when our loved one doesn’t wanna listen to what we’re, how we’re trying to support them, or what their health action plan might be. We are the ones doing that day in, day out. So yeah, it’s being heard. I think that’s the key.
Adrian 00:17:31: We heard it mainly from Mary and Luna. Your family or your friends are the first ones you ask for help when you are desperate. I mean, who else would or could you ask anyway? But we learned that it is not necessarily a good idea to ask them. Not only do you have to overcome the hurdle that is stopping you on top of it, asking them can drive them away or put a strain on your relationship. Mary, as an example, she said it a couple of times that she lost her friends, or at least some of them.
Georgie 00:18:02: If I were to go on my own lived experience, I would say that sometimes when one human is going through a lot and is feeling overwhelmed or finally has the courage to reach out for help, it just means that the other human that we’ve tried to connect to, to tell our story maybe wasn’t ready, maybe didn’t know how to respond, or they were just trying to cope themselves. So rather than it being, you know, people being responsible for letting us down, I like to look at it as that person in my extended family. They just didn’t have what I needed from them. So, but what can happen in that space is that I kept just trying to do it alone until again, the wheels fall off. So I think that’s why, you know, you also don’t, if I were to reflect on my connections with my friends and my family, sometimes, sometimes I felt like I was always the one that had all the problems and I was the one with the family that was just really full on. And I was like the, like the science experiment. Like everyone wanted to know what crazy stuff was happening in my family now. And I actually, that was really hard for me ’cause I love my family and I didn’t want anyone judging them. So I think it’s really hard in the dynamic when you love someone so much and you are caring for them, you’re trying to protect them and how others see them sometimes. But you’re also trying to do something for yourself and keep yourself afloat. So yeah, I think I just gravitated. You sort of learn early on who you can trust and, and you build that community around yourself. But it is it, it does it, it does fill me with sadness, the reality that a lot of people do feel so isolated because I mean, how many times you hear people say, you know, oh my gosh, you know, I couldn’t say and be honest about how I feel to my family or my friends ’cause they just don’t get it. They just don’t get it. I don’t think that that’s their fault. I, I just, I don’t think it’s a blame game. I think it’s more, I feel it’s more of a, this is just not the right pathway for me. And I just haven’t found it yet, yet is the word that I would use for myself when I look back. Because for me, I did act, I did call on an uncle or an auntie at times to help me bring myself back up to have a bit of time out or to talk to someone about how I was feeling. But it was the times that I couldn’t do that, that I would actually reach out to a support service like Beyond Blue, Lifeline. I just never knew Carer Gateway even existed. So I didn’t even know it was an option for me at the time.
Adrian 00:21:22: Reaching out for help is the key topic in the upcoming episode of Tune in to care. It is a long journey. A caring journey is a long journey before you realise that you can ask for help and at the same time it is not that easy as we try to make it out here. You have to overcome a lot of hurdles. And one last hurdle is that you have to ask yourself what made you reach out for help? Was there ever the pressure or feeling you cannot do enough for your loved one, which then led to reaching out for help? And above all of that, we also will look into the question if carers are actually stigmatised.
Luna 00:22:03: You feel like you’re very alone in your journey and that anyone you try to reach out to that’s not in a therapeutic sense is going to be too overwhelmed. It’s gonna be too much for them and they’re not gonna stick around for very long. So it’s, it’s a very lonely process
Adrian 00:22:20: To find out how to access this all important help provided by people like Georgie. Listen to our next Tune in to care episode, a podcast supported by Carer Gateway. And in the meantime, if you think you are a carer, you probably are.
Georgie 00:22:36: If you can’t wait to find out more about receiving free support as a carer for yourself or for a friend, why not give my colleagues at Carer Gateway a call? Call Australia wide. Simply dial 1800 422 737.
Adrian 00:22:53: Make sure you’re not missing out on the next stage of our caring journey, subscribe to Tune in to care on your favourite podcast platform or streaming service. Thank you Georgie Sawyer. And thank you all for listening. I am Adrian Plitzco goodbye. Until next time.
Note: Transcripts are generated automatically by AI and corrected manually.