Big Responsibilities
Navigating life as a young carer
Transcript
[BEGINNING OR RECORDED MATERIAL]
Kevyn: Hello, my name is Kevyn. I am a First Nations advocate with Dementia Australia. For more than 50,000 years, we have come together to trade knowledge, to learn, and to teach. Today, we joined to keep up that tradition. So, with that in mind, we now pay our respects through the Traditional Owners to Elders past and present, to those First Nations people joining us here today.
Tully: I wanted to just throw myself on the ground and have a, a tantrum like I was a toddler. It just felt so unfair. You know, I, I did not want to step into that role, but it kind of, it just happened overnight. As is often the case, sadly, a lot of their friends and even family, just disappeared. And, I was kind of, the only other adult in the house for him to vent to, to talk to, to bounce ideas off. So, I would come home from school and just get these daily dumps and downloads of what I'd missed that day and what had gone on, and I just did not want to hear it. I didn't want to know, you know, I, I wanted to sit there with my fingers in my ears and go, la, la, la, la, la la. Like, I just, I didn't want to have to deal with any of that.
Jim: Tully Smyth was still a child when she noticed her mom was, well, not exactly herself.
Hamish: It was just small things at first. Misplacing the prize for their annual Christmas scavenger hunt or losing their car at the shops.
Jim: And then it was bigger things, and then everything.
Hamish: This is Hold the Moment, a podcast from Dementia Australia. These are real stories from people living with dementia, caring for their loved ones, or professionals who support people along the way.
Jim: I'm Jim Rogers, and I'm living with younger onset Alzheimer's.
Hamish: G'day, Jim. I'm Hamish Macdonald. I cared for my dad who was living with Parkinson's and Lewy body dementia. While she was still in high school, Tully learned that her mum had been diagnosed with Younger onset dementia. She was just 51 years of age. So, for the next 17 years while her friends lived regular teenage, regular young adult lives, Tully lived an entirely different experience.
Jim: Today, Tully is a writer, content creator, and now she's an Ambassador for Dementia Australia.
Hamish: Tully, welcome to Hold the Moment.
Tully: Hi. Thank you for having me. I feel so honoured to have been included this season. I've been waiting for the call-up, patiently waiting by the phone!
Jim: Well, we always save the good ones till last.
Hamish: Jim always keeps people waiting. That’s the thing. Tell us a bit about your mum. So, her name's Kay, was Kay. Tell me about her.
Tully: I always say that she kind of was the original 'girl boss' before girl boss was a thing. She worked full time. My parents both worked full time. And she really cared about her career, was a real career woman. She kind of had all the power suits, and she'd work these long hours and be this absolute, you know, powerhouse of a woman running her own recruitment agency. And then she'd come home, we'd have these big dinner parties on the weekends. You know, she was kind of doing it all. She was just the best, vivacious, loud, you know, very big heart. She would cry every night at 'Home and Away'. Didn't matter what was happening. There was always something worth crying about in Home and Away.
Jim: Very emotional
Tully: Yeah, very emotional. Something else that we have in common. But she was just, yeah, this absolute powerhouse of a woman. Three kids, um, her and dad married a little bit later in life, so they had us a little bit later. But yeah, she was the best. My childhood was, I was really, really lucky, really privileged.
Hamish: How old were you when you first noticed something was changing about your mum? And what was it, that was the first thing you started to notice?
Tully: Well, she was diagnosed in 2002. She was 51 and I was 15 years old, and I have two younger brothers. One is younger than me, and then one was nine at the time. That's when she was diagnosed.
Jim: That was young.
Tully: Yeah, very young, as I said, they had us later in life, so, you know, but things like, Dad thinks there were signs from as early as 1996. So that's a good chunk of my, of my life. But I guess for me, what we noticed, were things like, losing a car, which we've all done before, but it was consistently, you know.
Hamish: Like in the car park?
Tully: In the car park at the shopping centre we'd gone to since we were kids. You know, Dad would have to come down in his car and do happy laps, trying to find the car. Opening the fridge and having like, four bottles of milk.
Jim: Because she had forgotten.
Tully: Multiples, yep, and she just kept replacing it, stuff like that. I mean, we had a, a Christmas advent calendar that she would do little treasure hunts for us, rather than chocolate. And she'd write these, you know, little riddles and they'd rhyme and you'd have to run to the place, and there'd be another little clue. I remember one year she couldn't remember where she'd hidden everything. So the, the, the clues didn't make sense. They didn't lead anywhere. And I remember being really surprised at that. Because she'd always pulled that off.
Jim: Usually so on the ball.
Tully: Yeah and I was like, "What do you mean you've forgotten where you've put everything? Like what?" So stuff like that is probably what I first noticed. But Dad definitely worked his butt off to keep a lot of the stuff that was going on behind the scenes, pretty under wraps.
Jim: When things started to change with your mum and the roles started to flip a little bit, going from being one of the kids to suddenly feeling like a parent - (Mm.) Or an adult in the house, how did that look in a day-to-day basis?
Tully: You know, I mean, I hated it. I really hated it. I wanted to just throw myself on the ground and have a, a tantrum like I was a toddler. It just felt so unfair. You know, I, I did not want to step into that role, but it kind of, it just happened overnight. I actually loved going to school because it was a place where I could pretend none of it was happening. No one at my high school knew what was going on back home. I stopped having friends over, because she just, she was embarrassing me and I didn't want to have to explain what was going on and why she was acting strange. And, you know, why she was forcing my friends to talk about the magnets on the fridge. Like they were her, again, prized possessions. But, very quickly I'd come home and dad who had gone, you know, we'd gone from a two-income household to a no income household. Dad had to quit his job to become mum's full-time carer. And, as is often the case, sadly, a lot of their friends and even family, just disappeared. And, I was kind of, the only other adult in the house for him to vent to, to talk to, to bounce ideas off. So, I would come home from school and just get these daily dumps, and downloads of what I'd missed that day and what had gone on. And I just did not want to hear it. I didn't want to know, you know, I, I wanted to sit there with my fingers in my ears and go, la la la la la la. Like, I just, I didn't want to have to deal with any of that.
Jim: Was he sort of chatting to you because you were in it as well? Like you're in the house and so you really understood everything, whereas other people maybe didn't?
Tully: Yeah, well, I don't think, he wasn't talking to anybody about what was going on. He did not lean on or reach out to any of his friends. And they certainly didn't sort of come knocking to ask if they could help, sadly. I think it probably has a lot to do with the fact that dad probably did keep a lot of it to himself. He's of that sort of generation that think that, you know, my wife, my family, I should take care of it. But, he had no one else to talk to. And, and very quickly, suddenly, we were having to make these decisions together. Like joint decisions about mum and, and her care and, her health and I was like, "I'm not, who, like, I'm not qualified for this." Like, "I don't know anything about anything." "I'm a teenager, I don't know what the best decision is." But, I did notice very early on that I felt this responsibility to be my mum's advocate. I don't if it's because I was the only other female in the house, and I did often feel like an alien in that house. I felt really misunderstood and isolated and alone. But I, very early on, I felt the need to advocate for her, to put myself in mum's shoes and think about what mum would want. And, that sometimes caused conflict and friction with my dad.
Hamish: Can you give me an example of something that you felt uniquely placed to advocate for your mum about?
Tully: Yeah, I can. So, look, it took so long to get the official diagnosis. We tested for everything under the sun. Sleep apnea, menopause, UTIs, brain tumours obviously, is one that, you know.
Jim: Which often dementia goes with all of those things, doesn't it? And those are usually things that have to be ruled out.
Tully: Yeah, yeah, but also when you have someone that's so adamant that, that they don't want to go to those tests and they don't want to have those, you know, which I fully understand. - (Yeah.) It was an even drawn out process, you know, she'd say, "I don't want you coming with me," to my dad.
Jim: And she sounds very strong and powerful, you know,
Tully: Yeah, which was great when she was well, but when she started, you know, losing her grasp on reality, that stubbornness became very tricky to deal with. But I remember by the time we got the diagnosis, so much had happened and the, the decline was so rapid that mum wasn't really with it anymore. And, Dad and I had a, a discussion about whether we should even tell her. Dad didn't think there was any point. He didn't want to upset her, you know, he thought that, does, does, it doesn't even matter at this point. And I really strongly believed that she had a right to know. And that she should know. Even if that means sort of telling her multiple times.
Hamish: Have you been able to talk to your dad about that since?
Tully: No. Um, I always get really nervous when I do interviews like this because I don't want to upset him, further. And I always sort of, nervously sent him the link. And I, you know, I, I, we email. This is an emailing family. I actually got an email from Dad basically telling me that it was time, for mum. And I screamed and shouted in my apartment by myself in Melbourne. I just couldn't believe that he'd emailed me that information. But that's just what we've done since this diagnosis. Mum was the feeler, mum was the emotional one, you know, Mum, Mum was the blubberer. And I feel like, in losing her, we kind of all forgot how to show emotion and how to connect and how to outwardly love each other. So yeah. The ramifications of something like a diagnosis, you know, it, it, it whirlpools in and ripples on for years and years.
(Music)
Jim: Your mum was in care for quite a long time. And I read that you'd said that you were almost angry that it, that your mum took so long to die. - (Mm.) Can you sort of explain what you meant by that?
Tully: So, it's crazy. It went from me, you know, living with this big secret at home and not telling any of my high school friends because (a) I was embarrassed. (b) I didn't think they'd get it. To, suddenly my, one of my best friends from high school, her dad was diagnosed with young onset dementia, which was wild. And in fact, it was this really beautiful moment where she kind of came to me and said, "I'm so sorry, that we were not there for you during high school. I'm so sorry that we didn't do more." And I said, "You didn't know, not, we were kids. I didn't know what I needed." Like, even if I had told you, I wouldn't have known what to ask for. What could you have done? What I wanted was for someone to help my dad and someone to, you know, take care of my mum. You couldn't have done that anyway. But her dad, very quickly, his decline was unbelievably rapid. And, I think within, like, two years he'd passed away. And, I sat there at his funeral, um, seething. Seething at my best friend's dad's funeral, you know, which was a conflicting feeling. But I was just so angry. I was so angry that his journey and his, you know, illness had been so quick. Cause, mum's was just dragging on. And I thought, it's just, it's unfair. It's unfair that he got to...
Jim: It's cruel.
Tully: Well, it's just no way of living, is it? This is why when I met you, Jim, I was so blown away and really touched and, and just so amazed by you, because, we never had, we didn't, it just didn't feel like we ever had this like, great period of knowing she had, had early onset, but she was still okay, and it was...
Hamish: You didn't have the making the most of it.
Tully: No, it was just bad. All really bad. And when I met you, I just, I could not believe just your positivity and your optimism and your zest for life and your determination. It was so inspiring. And I just, yeah, it, it made me really sad that we didn't get that with mum or you know, she didn't get a chance to, I don't know. I was just like, "Wow." It can look so differently if you just sort of try and change your mindset and look at it from a different point of view.
Jim: Looking back at your experience as a young carer, what resources or support would've made life easier for you or your family? Or, what sort of things would you like to see out there?
Tully: Yeah, I think that there is still, sadly a big gap in that market. I think that, you know, Dementia Australia, the 24/7 hotline, Helpline is so great, but there is still this sense of really wanting community. I think that my DMs are full of young carers because I'm kind of like this beacon of light. They see, "Oh, she, she gets it." But I'm just one person, and they all want to connect and feel understood by each other.
Jim: Because it's so unusual, right?
Tully: Yeah, and I feel like there needs to be more resources for young carers. But for now, I have, you know, a group with over 500 members on my Instagram of young carers.
Jim: That’s amazing.
Tully: So, for me then it needs to be sort of more support for them, more community. They just want to go to a pub on a Sunday and have a few beers, maybe talk about dementia.
Jim: Offload, just chat.
Tully: But maybe not. Maybe just talk to people that, that get it.
Jim: It’s like a comfort.
Tully: Yeah, and that group chat, goes off. It is popping off every day, either with, "Hey guys, you know, I've just had a really hard day, I just wanted to vent." Or a question, "Hey, does anyone have any advice on what I could do in the situation?" And they just, they come together and they share. Whether it's books, resources, podcasts. It's a really beautiful space, but it's only in my Instagram DMs.(- Yeah). And, I really want to work on creating something more formal and more substantial for young carers for the future.
(Music)
John: I was dismissed from my age, at times. You know, even say like 10, 11 years old, kind of, "What, what, what would, you know?" "You're, you're only a kid." When in fact, you'd be surprised what I would know at 10 or 11, when I was doing a bit more of that. I, I see Mum, day in, day out. I know the signs, it wasn't easy. I felt like, well, I feel a lot better talking to a brick wall, than some health professionals. At times, going, "Why won't you just listen to me?" "Just, just, just listen."
Jim: John is another young carer, but he's still in the thick of it.
Hamish: Yeah, that's right Jim. And it's particularly amazing given that John only just celebrated his 25th birthday. His caring career actually started around the age of five. John's mother lives with depression and anxiety and with his dad working shifts to support the family, John had to take on some of the caring duties, early.
Jim: And today, he's now also caring for his grandmother, or as he calls her, his Nonna, who lives with dementia and Parkinson's disease.
Hamish: How you going today, John?
John: Yeah, not too bad.
Jim: Nice to meet you, John.
John: Nice to meet you too, Jim.
Hamish: So, you are caring for a loved one who's living with dementia, but you've got almost an entire lifetime of practice under your belt. Do you remember the first time you were in the role of carer? How old were you?
John: I started caring at the age of five.
Hamish: And do you remember back that far? Or is this just what you've been told?
John: I can't quite remember back that far, but, um, it's just something that, you know I've been told, but I can base it on circumstances and events that have happened.
Hamish: And do you know what it was you were doing in those initial stages? What were you stepping in to help out with?
John: Yeah, so I was starting to help out care for my mother who has mental health issues. And some of the things that I was doing in those early, early years, about five years old, was being there to provide a little bit of emotional support. And then also doing some light household, you know, duties that I, that I could at five or six, you know, by doing a little bit of washing up. I couldn't quite reach the sink. So, I had, like, a little step stool to, to, to get up there and wash up and dry up.
Hamish: Was it scary for you at times with your mum?
John: Yeah, there were a few times that it was scary, um, you know At, you know, cause the pan-panic attacks, they can vary in the severity as well and how long they last for. And then also, you know, seeing mum go into an inpatient unit as well, that the first time she was in there, yeah, that was quite, quite scary. Even visiting there as well.
Hamish: And, because your dad was working shifts, right? - (Yeah.) At that time, so I imagine in some of these circumstances, it would've been you alone.
Jim: It's a lot of responsibility as well. - (Yeah.) You know, for you to call, when do you call an ambulance or when do you, you, it must have been quite hard to recognise. When do you step up?
John: Oh, a hundred percent. Yes, so you're right, Hamish. Yeah, there were times when, you know, dad was doing shift work, so either, he'll be at work, or he'd be sleeping. So, you know, it'd be up to me to try and be there. There, there's just something, it's hard to describe, but there was something to know when to call an ambulance and when not to call an ambulance. It was just something, you know, you can't really learn it from a textbook. You can only learn it through...
Jim: Lived experience.
John: Lived experience, exactly.
Hamish: I'm curious to know, given that you are young still, but you were young doing all of this - (Yeah.) But learning to advocate, did you find that there were circumstances where people dismissed you or ignored you because they looked at you as a, as a child?
John: Yeah, I, I was dismissed from my age, at times. You know, even say like 10, 11 years old. Kind of, "What, what, what would, you know?" "You're, you're only a kid." When in fact, you'd be surprised what I would know at 10 or 11 when I was doing a bit more of that. Also, when I started doing that kind of things. Yeah, it wasn't easy. It felt like, well, yeah, I'd get more, I would feel a lot better talking to a brick wall, than some health professionals, at times, but...
Jim: It would've been highly frustrating wouldn't it? When you really do know your stuff and you're so young. You've got a wise head on your shoulders.
John: Yep. Very, very frustrating, very. I got angry, like angry, as well, a few times. Not there in the appointment, but, um, afterwards, going, "Why won't you just listen to me?" "Just, just, just listen." If that's the only thing that you do is listen then, then do that.
Jim: Also, for the past few years, you've not only been caring for your Mum, but you're also now caring for your grandmother, who you call Nonna. So, tell us a bit about your nonna.
John: Yeah, so Nonna's moved up from Sydney to Central West New South Wales, and she's currently in a nursing home. And yeah, she's got Parkinson's and dementia.
Hamish: What was that like, the realisation that your grandmother was going to need help and support as well?
John: It was something that was on the cards but it isn't on the cards until it hits home and you know, you need to make those arrangements. And, look at selling the house. And yeah, doing all that to get her to move. But, you know, yeah, as you can see it's a bit emotional. You know, to, to talk about it. Yeah, wasn't, wasn't easy because you know, going, seeing her doing everything that she was doing, you know, us going to Sydney, her doing the, the washing, doing the laundry, cooking meals, doing the traditional Nonna things that you would expect from an Italian grandmother, to now, to not doing anything, and just, going downhill quite quickly.
Jim: I imagine that this would've been particularly hard from the perspective of, with your mum facing her own struggles with anxiety and depression and that would've been very difficult through your younger years. I have a feeling you would really have lent on your Nonna for her strength and support because not only would she be concerned for your mum, but for you, and so to sort of have those tables turned a little now, where she's the strong one of the family, that must be really hard to handle for you to see her, not herself, and not that supportive strength behind you. How's that been?
John: Yeah, a hundred percent. As you were talking about that, I can think of a few times when Nonna has come up to central west New South Wales to help care for Mum because you know, she was saying how much I, I was doing, but also wanting to be there for her daughter. And now she, she can't do that. And I know that, you know, I can tell that there are times when she wants to help out but she can't. I can see in the emotional with her as well. Because she has opened up to me a few times about, you know, "Oh I want to do some cooking and I want to do some, some of this, I want to do some of that." And it's like, how do you say 'no?' How do you say no to, no to Nonna. Yeah, it's, it isn't an easy conversation to have.
Hamish: I think maybe you're saving a lot of money on fruit at the moment. Can you explain that?
John: Yeah, so de-definitely saving a lot of money on fruit. So, Nonna's still being Nonna, and wanting to make sure you know, that we're all getting fed. So, her, her way is that when she goes out, she likes to grab some fruit from the 'fruit shop', as she calls it. And whenever we go visit her, we always have to make sure that we bring a bag or two, because there'll be a diversity range of fruit for us to bring back. So, there's been times when we've made some banana bread. You know, I've taken some fruit to work, given some fruit to some neighbours. So yeah, it's good to see that Nonna still hasn't forgotten about being a Nonna, and thinking about her family.
Hamish: Where is she keeping the fruit?
Jim: In a secret stash in the drawer!
John: All, over her room. So, some could be in drawers. We've purchased a nice fruit bowl for her, so she'll put some in there. Anywhere that she can hide it so other people don't see it. Or even in her basket, in her 'Walker.'
Jim: That's such an Italian thing as well, for the Nonna to be feeding you up and making sure you're looked after.
John: 100%
Hamish: And obviously Italian was her first language. How's she going with English now? Because, obviously, some people regress, you know, other terms for it as well, but they might lose some of those capacities
John: Yeah, so she is going more into speaking Italian. So, another role that I do provide for her is being a translator. I might not speak fluent Italian, but I speak enough to get by. So yeah, so she is losing her English and, yeah, reverting back to her first language, Italian.
Hamish: Is that distressing for her, if people can't understand her? You know, presumably in the Central West of New South Wales, not necessarily a huge number of Italian speakers.
Jim: Does she get frustrated?
John: Yeah, she definitely does get frustrated when she wants to try and ask for something or talk about something and there is that language barrier. I know the nursing home, at times, have gone to good old Google Translate at times to try and help out. So, there have been times when you know, we have, you know, have needed to go to the nursing home and just be that translator. It might be during the weekly GP appointment or if the nurses are having difficulty understanding or talking to her, do a quick trip up there and try and try and help out.
Jim: When I think of Italians, I picture like the huge family, around the dinner table and loads of cousins and aunties and uncles are all there to sort of support and help you. How does that compare with your own experience?
John: Yeah, I'm the complete opposite of that. So yeah, we come from a small family. Yeah, so mum, dad, myself and my cousin are the main core people. We do have some extended families, but yeah, not, not we, not from a big, - (Yeah.) traditional Italian family where people help out and we can call people but "Oh hey, I need a break, can you come and help out, you know, while I go away for a couple of days or the weekend."
Hamish: You've obviously been a carer for most of your life now. I wonder how you've changed as a carer during those years because as you've said, it's, you were helping out your mum who had panic attacks and anxiety, and then, you've started looking after your Nonna, but you've also grown. You've finished school, you're studying now. How has it changed your approach?
John: Yeah, so being a carer shaped my career. So, my first job was a Carer Peer Worker, and I was the first carer peer worker to be employed by that organisation. And it shaped my, the courses that I study as well. So, I was doing my Certificate in Community Services, now I'm doing my Diploma in Counselling, and it's definitely, enhanced, you know, knowing that, enhanced my knowledge that there's no 'Brady Bunch' family as I like to call it. There's no perfect family.
Jim: Absolutely not. There is no such thing.
John: Exactly. You know, every family has something going on behind closed doors, and you just don't know what people are going through that day. So, it's definitely, you know, shaped me. I’ve become very empathetic, you know, to people, you know, to members of our society.
Hamish: Because some people, some people would run the other way.
John: Exactly.
Hamish: Some people would say, “You know what? I've, I have had enough of this”.
John: Exactly.
Jim: It actually drew you in, really. It gave you such a foundation, and you've took that on in your career path.
John: Oh, a hundred percent. And it's also, I've been able to raise awareness of young carers and also carers, you know, in the workplace to consider, carers as well because, you know, support workers aren't always there all the time. You know, emergencies can happen and it's good for carers to
be kept up-to-date, obviously with the consent of that person. But to be kept up-to-date with appointments or even generally, on how the person's going.
Hamish: There might be other young carers listening to this and maybe feeling a bit isolated, maybe a bit angry about the circumstances they're in. What would you say to them?
John: They're all normal emotions to be going through. because everyone's circumstances are different, you know. Whether you are the primary carer or whether you're a secondary carer, the relationship that you have. But there is support available you know, as for an example, that Young Carer Dementia Support Group. But it's, you know, but it's also important to reach out, you know, through Carer Gateway. Or other services in your local area. Yeah, do not think that you're alone in this journey. And there are so many positive things that can arise from being a carer. You know, like, it shaped my career path. But also, it doesn't, you know, doesn't define you. You can still do things your age, you know. I've been able to go away with friends and have a break away and be a kid. I've been able to study. I've been able to do things that, you know, people might think, "Oh, you're caring for someone, you can't do that." "You won't be able to do that." But, hey, look here I am now recording a podcast in a suburb that I've never been to in my life. So, there's many things, you know, you can go into policy or advocacy work as well, if that's your passion, research as well. I know a lot of young carers that have gone in down that path.
Hamish: We've heard about how it's shaped your career and some choices you've made. What about how being a carer has shaped you as a person?
John: It's knowing that mum and Nonna have been there for me. Now, it's my turn to give and show them the care and love as well. It's also enhanced my knowledge around things, as well. Like, through the medical system, knowing how to advocate for people, and advocating for myself as well. Knowing my rights as a carer as well. And it's just shaped me for who I am. I love it. I enjoy it. I wouldn't change anything for the world, even though I'm caring for two people. If somebody said, "John, here's a million dollars and forget about things." I'll say, "No. Keep your money."
Jim: You're happy the way it is.
John: I'm happy with what I'm doing.
Hamish: John, thank you.
Jim: Thanks, John.
John: Thank you.
Jim: That's John, who cares for his nonna.
Hamish: And before that, you heard from Tully Smyth, who cared for her mum.
Jim: Hold the Moment is a podcast from Dementia Australia, produced by Deadset Studios.
Hamish: You can find more episodes and resources on Dementia Australia's website, dementia.org.au and make sure you're following Hold the Moment so you don't miss an episode.
Jim: This show is hosted by me, Jim Rogers.
Hamish: And by me Hamish Macdonald. The executive producers are Kelly Riordan and Sarah Dabro. The producer is Liam Riordan. Production Manager is Anne Chesterman. Sound Design by Slade Gibson.
Jim: And a special thanks to the whole team at Dementia Australia and to everyone who shared their stories on this podcast.
[END OF RECORDED MATERIAL]
About the episode
Tully was 15 when her mother was diagnosed with young onset dementia. She told no one, not even her closest friends, and carried the weight alone through high school.
John started caring for a family member at age five. Now 25, his experience was so meaningful that he became a professional support worker and is studying to be a counsellor.
Together, they illuminate the profound isolation young carers can face, and what it takes to find your way through.
Resources and support
Within the Dementia Australia Library the following topic guides are relevant to this episode and may be useful:
National Dementia Helpline
National Dementia Helpline 1800 100 500. You can call 24 hours a day, or request a callback, start a webchat, or send an email with whatever is on your mind.
Dementia information and education sessions
Online and in-person sessions from Dementia Australia that build understanding of dementia and provide practical strategies for support and care.
Carer Gateway
An Australian Government program providing counselling, respite and practical support for carers.
Watch the interview
In this video we go one on one with our podcast guests
Transcript
[BEGINNING OF RECORDED MATERIAL]
Tully: I did not want to step into that role, but it kind of, it just happened overnight. I was kind of, the only other adult in the house for him to vent to, to talk to. I wanted to sit there with my fingers in my ears and go, "la la la la la". Like, I just, I didn't want to have to deal with any of that.
Hamish: Tully, welcome to Hold the Moment.
Tully: Hi. Thank you for having me. I feel so honoured to have been included this season. I've been waiting for the call-up, patiently waiting by the phone.
Jim: Wow, we always save the good ones till last.
Hamish: Jim always keeps people waiting, that's the thing. Tell us a bit about your mum. So, her name, her name's Kay, was Kay. Tell me about her?
Tully: I always say that she kind of was the original 'girl boss' before girl boss was a thing. She worked full-time. My parents both worked full-time, and she really cared about her career, was a real career woman. She kind of had all the power suits, and she'd work these long hours and be this absolute, you know, powerhouse of a woman running her own recruitment agency. And then she'd come home, we'd have these big dinner parties on the weekends, you know, she was kind of doing it all. She was just the best, vivacious, loud, you know, very big heart. She would cry every night at 'Home and Away'. Didn't matter what was happening, there was always something worth crying about in Home and Away.
Jim: Very emotional.
Tully: Yeah, very emotional, something else that we have in common but she was just, yeah, this absolute powerhouse of a woman. Three kids. Her and dad married a little bit later in life, so they had us a little bit later but yeah, she was the best. My childhood was, I was really, really lucky, really privileged.
Hamish: So how old were you when you first noticed something was changing about your mum and, and what was it that was the first thing you started to notice?
Tully: Well, she was diagnosed in 2002. She was 51 and I was 15 years old and I have two younger brothers. One is a year younger than me, and then one was nine at the time, that's when she was diagnosed.
Jim: That was young.
Tully: Yeah, very young. As I said, they had us later in life, so, you know, but, things like, Dad thinks there were signs from as early as 1996, so that's a good chunk of my, of my life. But I guess for me, what we noticed, were things like, losing a car, which we've all done before, but it was consistently, you know.
Hamish: Like in a car park.
Tully: In the car park at the shopping centre we'd gone to since we were kids. You know, dad would have to come down in his car and do happy laps trying to find the car. Opening the fridge, and having like four bottles of milk.
Jim: Multiples.
Tully: Yep, and she just kept replacing it, stuff like that. I mean, we had a Christmas Advent Calendar that she would do little treasure hunts for us, rather than chocolate and she'd write these, you know, little riddles and they'd rhyme and you'd have to run to the place and there'd be another little clue. I remember one year she couldn't remember where she'd hidden everything so the clues didn't make sense. They didn't lead anywhere and I remember being really surprised at that, because she'd always pulled that off.
Jim: Used to be so on the ball.
Tully: Yeah, and I was like, "What do you mean you've forgotten where you've put everything? Like what?" So, stuff like that is probably what I first noticed, but dad definitely worked his butt off to keep a lot of the stuff that was going on behind the scenes, pretty under wraps.
Jim: When things started to change with your mum and the roles started to flip a little bit, going from being one of the kids to suddenly feeling like a parent or an adult in the house, how did that look in a day-to-day basis, you know?
Tully: I mean, I hated it. I really hated it. I wanted to just throw myself on the ground and have a tantrum like I was a toddler. It just felt so unfair, you know, I did not want to step into that role, but it kind of, it just happened overnight. I actually loved going to school because it was a place where I could pretend none of it was happening. No one at my high school knew what was going on back home. I stopped having friends over, because she just, she was embarrassing me, and I didn't want to have to explain what was going on and why she was acting strange and, you know, why she was forcing my friends to talk about the magnets on the fridge, like they were her, again, prized possessions. But very quickly I'd come home and dad who had gone, you know, we'd gone from a two-income household to a no income household. Dad had to quit his job to become mum's full-time carer and, as is often the case, sadly, a lot of their friends and even family, just disappeared, and I was kind of, the only other adult in the house for him to vent to, to talk to, to bounce ideas off. So, I would come home from school and just get these daily dumps and downloads of what I'd missed that day and what had gone on and I just did not want to hear it. I didn't want to know, you know? I, I wanted to sit there with my fingers in my ears and go, "la la la la la la." Like, I just, I didn't want to have to deal with any of that.
Jim: Was he sort of chatting to you because you were in it as well? Like you're in the house and so you really understood everything, whereas other people maybe didn't?
Tully: Well, I don't think, he wasn't talking to anybody about what was going on. He did not lean on or reach out to any of his friends and they certainly didn't sort of, come knocking to ask if they could help, sadly. I think it probably has a lot to do with the fact that dad probably did keep a lot of it to himself. He's of that sort of generation that think that, you know, my wife, my family, I should take care of it, but he had no one else to talk to. And very quickly, suddenly we were having to make these decisions together, like joint decisions about mum and her care and her health, and I was like, "I'm not, who, like, I'm not qualified for this.” Like, "I don't know anything about anything, I'm a teenager, I don't know what the best decision is." But I did notice very early on that I felt this responsibility to be my mum's advocate. I don't know if it's because I was the only other female in the house and I did often feel like an alien in that house. I felt really misunderstood, and isolated and alone, but I, very early on, I felt the need to advocate for her, to put myself in mum's shoes and think about what mum would want and that sometimes that caused conflict and friction with my dad.
Hamish: Can you give an example of something that you felt uniquely placed to advocate for your mum about?
Tully: Yeah, I can. So, look, it took so long to get the official diagnosis. We tested for everything under the sun; sleep apnoea, menopause, UTI’s. Brain tumours, obviously is one that you, you know...
Jim: Which often dementia goes with all of those things.
Tully: Yeah.
Jim: Doesn't it? And, and those are usually things that have to be ruled out.
Tully: Yeah, yeah. But also, when you have someone that's so adamant that they don't want to go to those tests and they don't want to have those, you know, which I fully understand, it was an even more drawn-out process, you know, she'd say, "I don't want you coming with me" to my dad.
Jim: And she sounds very strong and powerful, you know?
Tully: Yes, which was great when she was well, but when she started, you know, losing her grasp on reality, that stubbornness became very tricky to deal with. But I remember by the time we got the diagnosis, so much had happened and the decline was so rapid that mum wasn't really with it anymore and dad and I had a discussion about whether we should even tell her. Dad didn't think there was any point, he didn't want to upset her, you know, he thought that it doesn't, it doesn't even matter at this point and I really strongly believed that she had a right to know and that she should know even if that means sort of telling her multiple times.
Hamish: Have you been able to talk to your dad about that since?
Tully: No. Um-mm. I always get really nervous when I do interviews like this because I don't want to upset him further.
Hamish: Yeah.
Tully: And I always, sort of, nervously sent him the link and I, you know, I, we email, this is an emailing family. I actually got an email from dad basically telling me that it was time for mum and I screamed and shouted in my apartment by myself in Melbourne. I just couldn't believe that he'd emailed me that information but that's just what we've done since this diagnosis. Mum was the feeler, mum was the emotional one, you know, mum...
Jim: So, you're like your mum, basically.
Tully: Mum was the blubberer, and I feel like in losing her, we kind of all forgot how to show emotion and how to connect and how to outwardly love each other. So yeah, the ramifications of something like a diagnosis, you know, it, it whirlpools in and ripples on for years and years.
Jim: Your mum was in care for quite a long time and I read that you'd said that you were almost angry that it, that your mum took so long to die. Can you sort of explain what you meant by that?
Tully: Yeah, so it's crazy. It went from me, you know, living with this big secret at home and not telling any of my high school friends because I was embarrassed. I didn't think they'd get it, to suddenly my, one of my best friends from high school, her dad was diagnosed with young onset dementia, which was wild. And in fact, it was this really beautiful moment where she kind of came to me and said, "I'm so sorry that we were not there for you during high school. I'm so sorry that we didn't do more." And I said, "You didn't know, we were kids, I didn't know what I needed”. Like, even if I had told you, I wouldn't have known what to ask for. What could you have done? What I wanted was for someone to help my dad and someone to, you know, take care of my mum, you couldn't have done that anyway. But her dad, very quickly, his decline was unbelievably rapid and I think within like two years he'd passed away.
Jim: God.
Tully: And I sat there at his funeral seething. Seething at my best friend's dad's funeral, you know, which was a conflicting feeling, but I was just so angry. I was so angry that his journey and his, you know, illness had been so quick because mums was just dragging on and I thought, it's just, it's unfair. It's unfair that he got to...
Jim: It's cruel.
Tully: Well, it's just no way of living, is it? This is why when I met you Jim, I was so blown away and really touched and, and just so amazed by you because we never had, we didn't, it just didn't feel like we ever had this like, great period of knowing she had early onset, but she was still okay. And it was, you just...
Hamish: You didn't have the making the most of it.
Tully: No, it was just bad, all really bad and when I met you, I just, I could not believe just your positivity and your optimism and your zest for life and your determination. It was so inspiring and I just, yeah, it, it made me really sad that we didn't get that with mum, or, you know, she didn't get a chance to, I don't know. I was just like, wow, it can look so differently if you just sort of try and change your mindset and look at it from a different point of view.
Jim: Looking back at your experience as a young carer, what resources or support would've made life easier for you or your family? Or what sort of things would you like to see out there?
Tully: Yeah, I think that there is still sadly a big gap in that market. I think that, you know, Dementia Australia, the 24/7 hotline, helpline are so great, but there is still this sense of really wanting community. I think that my DMs are full of young carers because I'm kind of like this beacon of light they see, "Oh, she, she gets it" but I'm just one person and they all want to connect and feel understood by each other.
Jim: Because it's so unusual, right?
Tully: Yeah, and I feel like there needs to be more resources for young carers, but for now, I have, you know, a group with over 500 members on my Instagram.
Jim: Amazing.
Tully: Of young carers. So, to me, then it needs to be sort of more support for them. More community. They just want to go to a pub on a Sunday and have a few beers, maybe talk about dementia.
Jim: Offload, just chat.
Tully: But maybe not, maybe just talk to people that, that get it, that…
Jim: Just like a comfort.
Tully: Yeah, and that group chat goes off. It is popping off every day either with, "Hey guys, you know, I've just had a really hard day, I just wanted to vent". Or a question, "Hey, does anyone have any advice on what I could do in situation?" And they just, they come together and they share, whether it's books, resources, podcasts, it's a really beautiful space. But it's only in my Instagram DMs.
Jim: Yeah.
Tully: And I really want to work on creating something more formal and more substantial for young carers for the future.
Jim: Thank you so much for everything.
Tully: Thanks guys.
Jim: And we’re really with you all the way, aren't we?
Jim: Hold the moment is a podcast from Dementia Australia produced by Deadset Studios.
[Title Card:
To listen to the full podcast episode visit:
Dementia.org.au/podcast
Dementia Australia Logo
End of Title Card]
[END OF RECORDED MATERIAL]
Transcript
[BEGINNING OF RECORDED MATERIAL]
John: I was dismissed for my age. At times, you know, even say, like 10, 11 years old, "What would you know? You're only a kid.” When in fact, you'd be surprised what I would know at 10 or 11 when I was doing a bit more of that. I see mum day in, day out, you know?
Jim: You know the signs.
John: I know the signs.
Hamish: How are you going today, John?
John: Yeah. Not too bad.
Jim: Nice to meet you, John.
John: Nice to meet you too, Jim.
Hamish: So, you're caring for a loved one who's living with dementia, but you've got almost an entire lifetime of practise under your belt. Do you remember the first time you were in the role of a carer? How old were you?
John: I started caring at the age of five.
John: And do you remember back that far or is this just what you've been told?
John: I can't quite remember back that far, but it's just something that, you know, I've been told, but I can base it on with circumstances and events that have happened.
Hamish: And do you know what it was you were doing in those initial stages? What were you stepping in to help out with?
John: Yeah, so I was starting to help out care for my mother who has mental health issues. And some of the things that I was doing in those early, early years about five years old, was being there to provide a little bit of emotional support and then also doing some light household, you know, duties that I, that I could at 5 or 6, you know, by doing a little bit of washing up. I couldn't quite reach the sink so I had like a little step stool to get up there and wash up and dry up.
Hamish: Was it scary for you at times with your mum?
John: Yeah, there were a few times that it was scary, you know, at, you know, because the panic, panic attacks. They can vary in the severity as well and how long they last for and then also, you know, seeing mum go into an 'in-patient' unit as well. That, the first time she was in there, yeah, that was quite, quite scary, even visiting there as well.
Hamish: And, and because your dad was working shifts, right…?
John: Yeah.
Hamish: … at times, so I imagine in some of these circumstances it would've been you alone.
Jim: There's a lot of responsibility as well, you know, for you to call, when do you call an ambulance or when do you, it must have been quite hard to recognize, when do you step up?
John: Oh, a hundred percent, yeah. So, you're right, Hamish, yeah, there were times when, you know, dad was doing shift work so either, he would be at work or he'd be sleeping. So, you know, be up, it'd be up to me to try and be there. There, there's just something, it's hard to describe, but there was something to know when to call an ambulance and when not to call an ambulance. It was just something, you know, you can't really learn it from a textbook, you can only learn it through...
Jim: Lived experience.
John: Lived experience. Exactly.
Hamish: Given that you are young still but you were young doing all of this, but learning to advocate, did you find that there were circumstances where people dismissed you or ignored you because they looked at you as a child?
John: Yeah, I was dismissed from my age, at times. You know, even say like 10, 11 years old. Kind of "What, what, what, what would, you know? You're, you're only a kid," when in fact, you'd be surprised, what I would know at 10 or 11 when I was doing a bit more of that. I see mum day in, day out, you know.
Jim: You know the signs.
John: I know the signs. It wasn't easy. It felt like well, uh, I would get more, I would feel a lot better talking to a brick wall than some health professionals, but it...
Jim: Would've been highly frustrating, wouldn't it? When you really do know your stuff and you're so young. You've got a wise head on your shoulders.
John: Yep. Very, very frustrating, very... I got angry, like angry as well, a few times. Not there, at any appointment, but afterwards going, "Why won't you just listen to me? Just, just, just listen." If that's the only thing that you do is listen, and then do that.
Jim: And so, also for the past few years, you've not only been caring for your mum, but you are also now caring for your grandmother who you call Nonna. So, tell us a bit about your Nonna?
John: Yeah, so Nonna's moved up from Sydney to central west New South Wales and she's currently in a nursing home and yeah, she's got Parkinson's and Dementia.
Hamish: What was that like, the realisation that you, your grandmother was going to need help and support as well?
John: It was something that was on the cards, but it isn't on the cards until it hits home and you know, you need to make those arrangements and look at selling the house. And yeah, doing all that to get her to move but, you know, yeah, as you can see it's a bit emotional, you know, to, to talk about it. So, no, it was, yeah, was, wasn't easy because you know, going, seeing her doing everything that she was doing, you know, us going to Sydney, her doing the washing, doing the laundry, cooking meals, doing the traditional Nonna things that you would expect from an Italian grandmother, to now, to not doing anything, and just that ch… in it going downhill quite quickly.
Jim: I imagine that this would've been particularly hard from the perspective of, with your mum facing her own struggles with anxiety and depression, and that would've been very difficult through your younger years. I have a feeling you would really have lent on your Nonna for her strength and support because not only would she be concerned for your mum, but for you, and so, to sort of have those tables turned a little now where she's the strong one of the family that must be really hard to handle for you to see her not herself and not that supportive strength behind you. How's that been?
John: Yeah, a hundred percent. As you were talking about that, I can think of a few times when Nonna has come up to central west New South Wales to help care for mum because, you know, she was saying how much I was doing, but also wanting to be there for her daughter and now she, she can't do that and I know that, you know. I can tell that there are times when she wants to help out, but she can't. I can see in an emotional with her as well, because she has opened up to me a few times about, you know, "Oh I want to do some cooking and I want to do some, some of this, I want to do some of that", and it's like, “How do you say no? How do you say no to Nonna?" Yeah, it's, it isn't an easy conversation to have.
Hamish: I think maybe you are saving a lot of money on fruit at the moment. Can you explain that?
John: Yeah, so definitely saving a lot of money on fruit. So, Nonna's still being Nonna, and wanting to make sure you know, that we're all getting fed. So, her way is that when she goes out, she likes to grab some fruit from the 'fruit shop' as she calls it. And whenever we go visit her, we always have to make sure that we bring a bag or two because there'll be a diversity of range of fruit for us to bring back. So, there's been times when we've made some banana bread, you know, I've taken some fruit to work, given some fruit to some neighbours, so it's good to see that Nonna still hasn't forgotten about being a Nonna and thinking about her family.
Hamish: Where is she keeping the fruit?
John: All...
Jim: In a secret stash in the drawer.
John: All, all over her room. So, some could be in drawers. We've purchased a nice fruit bowl for her so she'll put some in there, anywhere that she can hide it so other people don't see it, or even in her basket in her walker.
Hamish: Okay.
Jim: That's such an Italian thing as well for the Nonna to be feeding you up and making sure you're looked after.
John: A hundred percent.
Hamish: And, obviously Italian was her first language. How's she going with English now? Because obviously some people regress, you know, there are other terms for it as well, but they might lose some of those capacities.
John: Yeah, so she's going more into speaking Italian. So, another role that I do provide for her is being a translator. I might not speak fluent Italian, but I speak enough to get by, so yeah. So, she is losing her English and yeah, reverting back to her first language, Italian.
Hamish: Is that distressing for her? If people can't understand her, you know, presumably in the central west of New South Wales, not necessarily a huge number of Italian speakers.
Jim: Does she get frustrated?
John: Yeah, she definitely does get frustrated when she wants to try and ask for something or talk about something and there is that language barrier. I know the nursing home at times have gone to good old Google Translate at times to try and help out but there have been times, when you know, I have needed to go to the nursing home and just be that translator. It might be during the weekly GP appointment or if the nurses are having difficulty, um, talk...
Jim: Understanding
John: …or talking to her, do a quick trip up there and try and try and help out.
Jim: When I think of Italians, and I picture, like the huge families around the dinner table and loads of cousins and aunties and uncles are all there to sort of support and help you. How does that compare with your own experience?
John: Yeah, I'm the complete opposite of that. We come from a small family. Yeah. So mum, dad, myself and my cousin are the main core people. We do have some extended families, but yeah, not, not we, not from a big, yeah, traditional Italian family where people help out and we can call people, go, "Oh hey, I need a break, can you come and help out, you know, while I go away for a couple of days or the weekend".
Hamish: You've obviously been a carer for most of your life now. I wonder how you've changed as a carer during those years because as you've said, it's, you were helping out your mum who had panic attacks and anxiety and then you've started looking after your Nonna, but you've also grown, you've finished school, you're studying now; how's it changed your approach?
John: Yeah, so being a carer shaped my career. So, my first job was a Carer Peer Worker and I was the first carer peer worker to be employed by that organisation and it shaped my, the courses that I study as well as, so I was doing my Certificate in Community Services. Now I'm doing my Diploma in Counselling, and it's definitely enhanced, you know, knowing that, enhanced my knowledge that there's no 'Brady Bunch' family as I like to call it, there's no perfect family.
Jim: Absolutely not. There is no such thing.
John: Exactly. You know, every family has something going on behind closed doors. You and you just don't know what people are going through, that day so it's definitely, you know, shaped me. I've become a, I've become, you know, very empathetic, you know, to people, you know, to members of our society, you know.
Hamish: Because some people, some people would run the other way.
John: Exactly.
Hamish: Some people would say, "You know what, I've, I have had enough of this".
John: Exactly.
Jim: It actually drew you in really, it gave you such a, a foundation and you've took that on in your career path.
John: Oh, a hundred percent and it's also, I've been able to raise awareness of young carers and also carers you know, in the workplace, to consider carers as well because, you know, support workers aren't always there all the time, you know. Emergencies can happen and it's good for carers to be kept up-to-date obviously with the consent of that person but to be kept up-to-date with appointments, or even generally on how the person's going.
John: There might be other young carers listening to this and maybe feeling a bit isolated, maybe a bit angry about the circumstances they're in. What would you say to them?
John: They're all normal emotions to be going through because everyone's circumstances are different. You know, whether you're the primary young carer, either the primary carer, or whether you're a secondary carer, the relationship that you have, but there is support available, you know, as for an example, that Young Carer Dementia Support Group. But it's, you know, but it's also important to reach out, you know, through Carer Gateway, or other services in your local area. Yeah, do not think that you're alone in this journey and there are so many positive things that can arise from being a carer, you know, like it shaped my career path. But also, it, it doesn't, it does not, you know, it doesn't define you. You can still do things your age, you know, I've been able to go away with friends and have a break away and be a kid. I've been able to study, I've been able to do things that, you know, people might think, "Oh, you're caring for someone, you can't do that, you won't be able to do that". But hey, look, here I am now I'm recording a podcast in a suburb that I've never been to in my life. So, there's many things, you know, you can go into policy or advocacy work as well, if that's your passion, research as well. I know a lot of young carers that have gone down that path.
John: We've heard about how it's shaped your career and some choices you've made. What about how being a carer shaped you as a person?
John: It's given me independence, but also, it’s knowing that I can, mum and dad have been there. Well, mum and Nonna, sorry, have been there. For me, now it's my turn to give and show them the care and love as well. It's also enhanced my knowledge around things as well, like through the medical system, knowing how to advocate for people and advocating for myself as well. Knowing my rights as a carer as well and it's just shaped me for who I am. I love it. I enjoy it. I wouldn't change anything for the world, even though I'm caring for two people. If somebody said, "John, here's a million dollars and forget about things." I'll say, "No, keep your money".
Jim: You're happy the way it is.
John: I'm happy with how, what I'm doing.
Hamish: John, thank you.
Jim: Thanks John.
John: Thank you.
Jim: Hold the moment is a podcast from Dementia Australia produced by Deadset Studios.
[Title Card:
To listen to the full podcast episode visit:
Dementia.org.au/podcast
Dementia Australia Logo
End of Title Card]
[END OF RECORDED MATERIAL]
Ask Us Anything
Transcript
[BEGINNING OF RECORDED MATERIAL]
Kevyn: Hello. My name is Kevyn. I am a First Nations advocate with Dementia Australia. These lands in which we are meeting are many countries filled with languages similar and different. For more than 50,000 years, we have come together to trade knowledge, to learn and to teach. Today, we join to keep up that tradition. So, with that in mind, we now pay our respects to the Traditional Owners, to Elders past and present, to those First Nations people joining us here today. Welcome and thank you.
Jim: Being a young carer for someone with dementia can be so challenging, and can include moments of stress, responsibility, and adjustment. Hi, I'm Jim Rogers and this is Hold the Moment, Dementia Australia's award-winning podcast of real stories that helps you navigate life with dementia. On our 'Ask me Anything' episodes, questions you'd like answered about living well with dementia. Bianca, a young carer from Broken Hill has contacted us with a question about being a young carer.
Bianca: Hi, I'm Bianca. My mum is living with younger onset dementia and while I'm only in my twenties, I am her main carer at the moment. I feel like my bosses, my lecturers, and even my friends have no idea about all things I'm doing behind the scenes. How can I help them understand?
Jim: To help unpack it, here's Jane Smith, family engagement counselor at Dementia Australia.
Jane: Oh, thank you Bianca. It's a really good question and one that many young carers have raised with myself in my work and my colleagues, of course, at Dementia Australia. There's no doubt it's a huge and invisible job with many moving parts that you have to add to your own life when that life should be about exploring new possibilities. And let's face it, no one probably can really understand unless they've done it themselves. As we know, people's understanding of younger onset dementia is limited, and often people perhaps might reference to you, "Oh yes, I understand, you know, my grandmother has dementia." And actually that's not your experience at all. And I suppose the other part there is when you're thinking about, you know, how do I explain to people, unfortunately, as we know, there is still stigma and you don't want perhaps it to be misunderstood what it is that you are wanting to tell people or to feel being disrespectful to your parent. Like anything, it's probably you, and I know that you're kind of thinking, "Whoa, I've got a big enough load, don't I?" But it probably is you, that will have to educate them, these other people in your life, your lecturers and your people at work. And maybe it is a sit-down with work or Uni and needing to give them a one-on-one on younger onset dementia and what that actually means for you. So, you might say, "My mum and dad has this, this, this..." whatever, however you want to explain it. And this impacts them in these ways, and only you will know what ways they are. Then you may say something like: "This means that not only am I running my own life as a young person, I'm taking on a kind of parental role for them. And this load means that maybe things like I finished my lecture and have to go straight to get the shopping or go to the pharmacy. I start to write my assignment and my mum keeps coming in to ask me the same question 10 times over." Or you might say, "My dad doesn't sleep well at night and I need to get up constantly to reassure him." And so the result of this, then you might be as part of your explanation, saying, "At times, I might seem unreliable." And you know, maybe for you that's almost an intolerable thought that I don't want to be unreliable. It's important for me to do well and be seen to be, you know, a good worker or a good student or whatever those things are. But you need to let them know, I might need extra time for this assignment. I might need extra support in my workplace. And then asking them, can you offer me this? And if you can't, who might be able to? Is there somebody else in the organisation that can kind of support me in some way? I know I'm kind of making this sound sort of perfect and you're not necessarily always going to get the kind of response back that you hope, but I think, you know, yes, just kind of coming back to your own lived experience, you are the expert in this and you probably know the best, what kinds of things you need. Of course, there are organisations like the Young Carers Network and a wonderful organisation called Little Dreamers who completely understand the impacts on young carers, not necessarily those that are caring for people with younger onset dementia, but certainly they will have some other ideas about how you can get support, which might also be practical as well. So, thank you, Bianca.
Jim: Stuart is a young carer from one of my favorite places, actually, Margaret River in Western Australia. Here's his question.
Stuart: Hello, I'm Stuart and I'm from Margaret River. I'm wondering, how do any other young carers manage everything? Like between work, friends, finances, my partner appointments and full-time workload of caring, I've got no idea how to handle it all.
Jane: Yeah, thank you Stuart. This is a biggie, isn't it? And in your mind you might be thinking, well, everybody else seems to be managing beautifully. And I guess from my point of view in the work I do, I assure you people are not, cause it's huge. You have a full-time caring role and then likely another full-time job and probably plopping on top of that some study and your relationship. So, your question is a great one because perhaps really what you're highlighting for other young carers listening, is that validation of this is massive and you are a human being and we cannot do it all. It is impossible. I'd be saying really to you, well done. It is impossible. I realise, you know, you might be kind of wanting to shout back at your listening device sort of saying, "But I still have to do it all day". And I guess what I'm saying to you is yes, you probably have to attend to many, many different spheres of things in your life in the person you're caring for's life. But you don't have to do them all at a 100% or 110% which is probably what many people are looking for. You're going to get things wrong, you're going to make mistakes, you're going to forget things, and that is okay. That's probably the biggest message I kind of want to give. Because you are juggling, and if you aren't allowing any kind of leeway, just sometimes to say, today, "I can't." Or, this is too much right now and I'm just going to remove myself. I'm going to sit in the garden for a moment and just breathe. That is self-care. Even if it's momentary, just recognising when it is too much for you. And then kind of coming back into the fray. Maybe there's some other people who might put their hand up but they don't know how to help. That could be another part of this as well. Are you letting people know that maybe you need help? It's hard to ask for. It's also sometimes exhausting having to explain why. If you can, have a full and frank conversation, "I need this, especially now." For example, this work project's on, and then when they're done, I can breathe a little bit more. So perhaps some skills around delegation. With one family I work with and I don't know Stuart, whether you have siblings around or not, but in one family I work with, we worked out, you know, one sibling could be 'on' when the others needed to drop back. And that can be something that works. Help is not always as perfect as you might like. And care will look different to whoever provides it. There are other service systems like Carers Gateway on Young Carer Networks who might ensure that you can have access to all the available supports. But, I don't want to dismiss this juggle that you're doing. It's the old oxygen mask analogy. If you fall down, the person living with dementia falls down too. So self-care, although it might be an overused term, is vital. What does it mean to you? The other thing I really just do want to say is, is it may also be you get to a point where you can't actually do it anymore. And that is okay too. There is always help and hope. And actually, Stuart in Western Australia where you are, there's an organisation called Brightwater who specifically support young carers who care for a parent with younger onset dementia. I'd really encourage you to have a look at them. And Dementia Australia, of course, do you understand what supports young carers require. Thank you, Stuart. That's a great question.
Jim: If you've got a question, you can also call the free National Dementia Helpline on 1800 100 500. Dementia Australia's trained advisors are available 24 hours a day, every day of the year. And look out for more episodes of Hold the Moment. This episode was produced by Deadset Studios for Dementia Australia.
[END OF RECORDED MATERIAL]
You asked, we answered
This episode answers questions about how young carers balance the demands of work, friends, finances and caring, and how to explain those demands to the people around them. Jane, a Senior Family Engagement Counsellor at Dementia Australia, offers practical and compassionate strategies.
About the podcast
Hold the Moment is an award-winning podcast from Dementia Australia full of real stories about life after a dementia diagnosis.
Season Three dives into the topics that can be hardest to talk about, with compassion, practicality and a unique sense of hope.
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