[00:00:03] Speaker A: Welcome to Choice and Control, a Carers Queensland podcast.
This October, Australia comes together to recognise National Carers Week, a time to reflect on and celebrate the vital work of unpaid carers across the country.
As the peak body for carers in Queensland, Carers Queensland is at the forefront of advocating for recognition, support and positive change for all carers in our state.
In this special episode, we sit down with three carers who each share how their lives changed when they became carers, the challenges and support they've found along the way and the advice they have for new carers.
Our first guest today is Natalie from Brisbane who has worked for over 20 years as a community pharmacist and helping people manage their health. But when her seven year old son Raf was diagnosed with cancer, everything changed. She became his primary carer through two tough years of treatment and she's still by his side as he adjusts to life after cancer. I started by asking Natalie about her young son Raf and how her caring story began.
[00:01:17] Speaker B: Well, my caring role has actually been, I guess more in a professional capacity for a long, long time. I was a community pharmacist in a regional town, so I had been pretty providing what I thought was care for a long time prior to Raf getting sick, but I suppose it's then been through exposure to, you know, kids, cancer and the pathway that we have been on that has made me realise that maybe what I had before was professional sympathy, not really empathy, and that caring as a paid versus an unpaid carer are two completely different things.
[00:01:50] Speaker A: Can you tell me about that?
[00:01:53] Speaker B: Yeah. So I guess for me with Raf, he was diagnosed really unexpectedly when he was seven years old with stage four neuroblastoma, which is fairly aggressive and has horrible stats in terms of survival and relapse.
So we were fairly blindsided by that one and we were relocated interstate and headed into treatment within four days of him just having a tummy ache in the thick of COVID And our life changed pretty dramatically because Raf had always been a bit of a daddy's boy and I had been the one that was working 70, 80 hours a week.
So for me to have, it's like the wrong parent ended up in this situation emotionally and socially and for all these reasons, but potentially it ended up being the right parent because it was, you know, I could be that little bit more clinical and try and get him through that. And level headedness and being able to multitask are probably skills that a carer needs and their skills that I was fortunate enough to have.
[00:02:58] Speaker A: When at first, when you first realised what was happening.
Did you realise at that point that you were now a carer?
[00:03:08] Speaker B: Not at all. I mean, I attacked it like I would attack anything in life. And for me, when we first met with our oncologist and he said, oh, it's a 20 month protocol, I was like, okay, this is my job for 20 months.
And it was like, these are all the steps that we need to take and these are the things that we need to do. And at the end of it, really, we just have to hope that we've got the outcome there and we've got the kid at the end of it. There was not really much that I could do to change that, but it was more when that 20 months ended and we were so fortunate to still have Raf, but Raf wasn't. He wasn't the boy that we had before treatment and before cancer.
And I suppose going from being in a supported system in an inpatient acute care setting, even over long periods, it's still acute care and it's still supported. It's when you get back into the real world and you're like, okay, what actually comes next? What is our new normal?
And that was, I think, the part that I went, oh my God, I don't actually know what this is and what does life hold for us?
That was the confronting bit.
[00:04:11] Speaker A: So how did you tackle that, Natalie? What did you do?
[00:04:15] Speaker B: Not well, I think it's really hard because when you're trying to provide care for somebody, whether it be someone that's old or young or full faculty or not, they need everything. They need your time, they need your commitment, they need your effort. And that's maybe not conducive to being able to sit down and find resources and access help that's out there and even know where to begin.
But to try and tackle that, it's really daunting.
And I suppose for someone even with a health and medical background that's really literate and quite educated, and I still struggled with that. That's what made me go, oh, my gosh, this process, it's really, really hard to navigate.
So suppose for us, we were really lucky through the hospital, we'd had a great social worker that was very much like, this is perfectly normal. This isn't something that you should be worried about or ashamed about.
It is difficult, which sucks, but it is what it is and this is what you've got to work with. And let's establish some parameters and let's work out what you need and where you can get it from.
[00:05:29] Speaker A: Is there anything you wish you'd known back then when you first became a carer.
[00:05:36] Speaker B: I mean, it would have been. I guess it would have felt better if I'd have known that it's okay to not be okay. And I know that that's something now that everyone talks about the. Are you okay? And it's almost become a little bit of a cliche, but there's still a lot of stigma associated with being a carer. The same way, I guess, as I feel. It's like with being a mum. For a long time, I had a job and I had a role and I had a really clear identity.
And then I would find myself almost shirking away from going to things with my family or having to go to anywhere, because when I would introduce myself or someone would introduce me, and they'd be like, oh, what do you do? And I'd be like, I'm just a mum or I'm just a carer.
[00:06:21] Speaker C: Like, it's the.
[00:06:22] Speaker B: Just that. I think it really just.
[00:06:25] Speaker C: It's.
[00:06:25] Speaker B: It doesn't explain what it is because they're some of the hardest roles in the world that until you've lived it, you wouldn't understand it. And it's just. It's not given maybe the respect and the credibility that it deserves. And I suppose if I'd have known that at the start, it would have maybe made me not feel like such a failure. I just felt like a failure for so long that, you know, I wasn't.
I used to be professional and now I wasn't. And I used to be very tangible with what I could achieve in a day, and now I sometimes couldn't even get two things done off a to do list because it just. The whole day could get derailed.
And that's a really big step to, I guess, realize that you don't have that kind of control over your life anymore. And that's not necessarily you failing. It's just you learning to navigate a different reality.
[00:07:14] Speaker A: Do you feel that carers get enough recognition for the work that they do?
[00:07:20] Speaker C: Not at all.
[00:07:21] Speaker B: I mean, I think we're getting better at recognising the role of paid carers. Definitely.
Especially with aging populations and in healthcare settings and the way that it is marketed as a career, they're doing it beautifully. Well, but in terms of unpaid carers and even what constitutes being a carer, I don't think that it's well explained. It's definitely not something that's well defined.
[00:07:47] Speaker A: How would you define it?
[00:07:52] Speaker B: I don't even know that there is a definition, I think, because there's always somebody to care for and even in your role, like Raf is the person that I care for as his primary carer and who gets the most of my time.
But I'm still a wife, I'm still a mother, I'm still a daughter, I'm still a daughter in law.
I still have friends that I check in on. I've still got. You know, there is more than that. And I think it's really hard to draw the line as to what constitutes care. Like, is it a. Is it that you're there physically, is it that you're doing daily living activities, is it you're there emotionally?
There's just so many and maybe that's why it's not being done well and what's not put out there well and why so many people don't realize they're actually doing it. Like, if you're someone's go to person in any way, shape or form, kind of makes you their carer.
[00:08:44] Speaker A: Yeah. And there's a difference between being a mother and being a carer as well, right?
[00:08:53] Speaker B: There definitely is. I mean, there's the motherly instincts that you want to do everything to give your kid the best possible life that they can have.
But there's another in terms of extra assistance when they don't follow standard trajectory for life, you know, when they're not.
When they're not academically on track or when they're not socially on track, or if they need extra physical assistance to do things like. That's beyond parenting.
[00:09:20] Speaker A: What about you, Natalie? Your personal journey? How are you going with the changes, the adaptations you've made to your life?
How's that going?
[00:09:32] Speaker B: It's not fun.
I say it with a little bit of a giggle because there's been times that I'm like, I just. I don't even know how I got here. And I don't know, I don't know a path forward because I don't know what a future holds. Like, at what point is Raf going to be able to do things independently for himself? And when that happens, I'm gonna have to start again. Like, I can't go back to work in my full time capacity at this point because I need to be available for him. He's still got a lot of allied health appointments and a lot of support that he needs.
I think because there's no finite period on when my role as a carer ends, I can't really make a plan. And for somebody like me, that's very organised and has always had a plan.
It's almost unraveling and you don't know what to do with that. So I've struggled with that. I'm very fortunate that I've got an amazing set of friends and a few parents that I've met through raft. Cancer. Cancer Life. I guess that we kind of bounce it off each other and we're all in that similar sort of feeling that you can, you know, not necessarily the same stories, but the same. The same emotions and the same ups and downs and the same lack of.
Lack of direction.
So for me, that's, I think, been the hardest bit because it's so different to how I was raised and how I am innately.
But by the same token, I've had people that have known me for 20, 30 years that are like, Matt, this is like how you were before you got bogged down in work. This is you being passionate. The stuff that you're doing is rough. You know, you're back to finding the creativity and finding the fun in each day and, you know, you've got more emotional depth and kind of getting back to those core basic things that make me humid. Sounds like a funny way to put it, but I guess it's bringing back the feeling and all of those sorts of things that we, I guess, lose along the way when we get bogged down in reality of bills and finances and what makes a traditional life.
[00:11:39] Speaker A: I guess you said there that, you know, having good friends and support groups has been really helpful. Can you tell me a bit more about some of that advice you'd have for carers out there about support groups, who they can reach out to? What worked for you?
[00:11:54] Speaker B: This was, I suppose, a tricky one because as soon as you start looking at.
For me, as soon as I started looking at, you're reaching out. There's oncology forums and there's things I do through the hospital and it's great. But as soon as you start looking at things like this, all your algorithms change. Social media is so clever these days that all of a sudden it's very easy to get caught in almost a rabbit hole of this is all that life is. All life is, is cancer life. And everything is doom and gloom. And it's quite hard to not fall down that trap. And I think a lot of people potentially do, but it is hard to not let it consume you.
I suppose that's where I struggled a little bit with.
With how to reach out and who to reach out to without going down the rabbit hole.
I mean, for me, it was Also really tricky because when you're going through that acute kind of care situation, you don't always have time to reach out and check in on other people.
Or if other people try and check in on you, it's sometimes easier just to say fine, because you know that they're not going to understand it or otherwise they feel awkward and they don't want to raise the conversation. So they basically just treat you like a bit like a leper that just nobody comes near you and there's no interaction and it's really isolating.
And for us then coming out the other side, straight away people are like, well, okay, that's great. When are you coming back to work? When's Raf going back to school? When are you moving back to where you came from? I'm like, that's not our life anymore. We can't just walk back into that.
That doesn't happen.
So I suppose finding people that you click with that understand, I guess the process that you've been on. I hate the word journey, I feel like it's overused. But the journey that you've been on, I guess it needs to be people that understand it to the best of their working knowledge and understand that that's maybe why you're erratic or why you can't commit to things and they don't judge you for it. And people that have been on these similar pathways, you'll find it. And that's why things like with carers Queensland and when wellways were doing like the social catch ups, it was people that care for all different sorts of people, all different ages, but to be able to then catch up and you kind of know what they're going through, you don't have to have the conversation, you can actually just go straight in and talk about things that are enjoyable or different parts of your life. You don't necessarily have to sit down and get bogged down in that same, that same role. You don't have to go down that pathway because it's implied it's already there. You don't have to reinvent the wheel. You can just go straight, like skip the small talk and go straight to, hey, how nice is it to be out? Isn't it good to be doing something different?
My friends have been great because they stopped me getting caught in that rut. It's really hard to just kind of go, this is it is what it is. And family is almost too close, it's too subjective. And professionals, they're quite clinical and they can tell you what you need. And even Me, I can sit back and go, the science brain of me and the realistic side of me can see that this is what's happening and I can see why I'm feeling this way.
But to actually feel it, when you're living it, you don't have that objectivity. So it makes, I guess, dealing with professionals sometimes a little bit hard. And it makes dealing with family maybe even far, even harder because they have that different sort of feeling on things.
But if you've got, you know, a similar like minded group of people within an organization or you've got friends that I guess can have been there through the whole pathway and see what you've gone through and they're just there. There's no judgment. Like they're the kind of people that you really need to find and have in your corner when you need them.
[00:15:43] Speaker A: You mentioned there carers Queensland and you have taken on a great role for us as a carer ambassador.
Why did you decide to take on that role, Natalie?
[00:15:54] Speaker C: It was a little bit of a.
[00:15:56] Speaker B: Bone of contention in my household.
My husband was very much like Nat, I don't understand why you're doing this. Like, cancer has taken so much from us. Don't you just want to like run as far away as you can from cancer life and from this life and just get away from it? And a little bit of me did feel like that. I suppose for Raf, when I look at it realistically, he has a 50% chance of relapse.
So we might be going down this pathway again.
And if I hadn't put anything into trying to change that for our future, for his future, but also for other families like ours that are going to be navigating this future, that's something that I've got to live with and that just didn't sit right. So I guess for me to be able to articulate it maybe a little bit differently or put some perspective on it that taps into the health background because I have the luxury of seeing it from both sides, I guess.
So for me to be able to put a voice to that was something that I thought that I might be able to do and to contribute. I mean, realistically, I have for all the health things and the interventions that Raf has had done to him, I could never afford to pay that medically if not for Australia's healthcare system. We're so lucky with the healthcare system that we've got that it's kind of my give back to that. I am so lucky to have walked away from this with a kid that this is My give back.
[00:17:22] Speaker A: That's such a beautiful sentiment, Natalie.
We're grateful to have you on board and, you know, we'd love to hear what you think about some of those messages and advice that you would have for new carers or ongoing carers from your experience.
[00:17:44] Speaker B: For me, I guess there is no such thing as a stupid question. I know that people say that and then they still don't ask the stupid question because they're ashamed of being judged or they're just, they're not sure who to ask or what to ask. Ask it anyway because you know what, it's not necessarily us that we're asking it for, it's for the person that we're trying to care for. But we've also got to take care of ourselves a little bit. And if we don't put systems in place that do that, we can't take care of ourselves if we can't take care of them.
So I guess we need to not be ashamed of asking for help or asking those questions, whether they feel silly or not.
And I suppose I wish I'd known that a lot sooner. So for anyone starting out this process or anyone that's even been doing it for a long time but too nervous to ask or doesn't want to have the judgment, just ask it. Because you know what a five minute question or a five minute conversation and the risk of putting yourself out there for that little bit of time could change the trajectory of your ability to provide care for your person.
It could be monumental and guaranteed whoever you've asked it of is probably not going to remember it two days from then. So there really needs to be no fear and no stigma in asking these questions because you know what? It might be the complete opposite. And when you ask the question, they might be like, hey, we've never thought of that. Maybe we could put that out there for other people too.
[00:19:05] Speaker A: And that was Natalie from Brisbane, mother, carer and ambassador. This national Carers Week here at Carers Queensland, our registered training organisation has delivered subsidised accredited carers training for more than 10 years. We're committed to providing flexible accredited training options that fit your busy schedule.
Whether you want to upskill or change careers, our quality content and experienced trainers or will guide you through a certificate or short course that could change lives.
Train with the experts and connect with us today. Phone 1300,626,636 or email us on trainingarerscld.com Our next interview in this special National Carers Week episode is with 69 year old Richard from the Gold Coast. He's the full time carer for his wife Gail, who's been living with multiple sclerosis and using a wheelchair since 2012.
Watching her health change over the years was tough for Richard, but together they found strength, humour and resilience in everyday life. I started by asking Richard about his role as a carer ambassador and why he wanted to take on this important position.
[00:20:20] Speaker D: Mainly, I suppose, a little bit of encouragement from Gayle for all the sort of experiences we've had either with her or other friends and relatives who have been carers and wanted to just sort of pass on the experiences and maybe some of some tips on how to make things a little lighter and easier for each other.
Gail started to develop the symptoms of Ms. About six months after the birth of our daughter.
Wasn't too bad to start with, probably became more noticeable maybe 20 years ago and then it's slowly developed just for girls, loss of balance, I mean we always used to walk hand in hand anyway, but it took on a different meaning this way so in case she lost her balance she wouldn't stumble off in an odd direction. So I'd always be able to just pull her back.
So it probably about 15 years ago it started to get worse and then a little over 12 years ago is where basically Gail could only just get around in a wheelchair from that point, really couldn't go out to work anymore at that stage. So I became a carer then. And then that ended up developing progress to trying to find a house that was better suited to Gail rather than the sort of split level house we were in, to finding a nice single level where she was able to get around with I suppose better mobility and looking, trying to look a bit after herself.
And one of the worst things for, especially for someone in a wheelchair is carpet. So instead of ripping up carpet and trying to put ramps in them, make the old house dangerous, we found a, a nice house that was probably 4/5 tiles and made it a much easier prospect for modifying the house to suit us.
[00:22:29] Speaker A: Do you find that accessibility is something that you constantly encounter in society, Richard?
[00:22:36] Speaker D: Oh yes.
I mean, well, just down at a shopping centre at Southport a little while ago and you have a large shopping centre but in a rather large car park they've only got four handicap spots, so that's a real nuisance. And then you've got to try and find a parking spot at the end of an aisle or next to a pedestrian crossing or walkway that they've got in there. So it becomes really difficult Be it toilets, general park areas. I mean, we've come across people with disability parking spots, but there's no ramps to get up onto the footpath and sometimes the spots are actually the width of a normal parking spot. And so to try and safely transfer Gale to a wheelchair, it's extremely difficult. And Helensvale Shopping Centre, I think it is up the road here, all their people with disability spots are out in the sun.
And especially for Ms. Sufferers who are temperature sensitive in the summertime, you've got to grab the car to help themselves get into it. So cars can be quite hot for them and extremely painful, but everybody else is in the shade and they think they're helping by putting PWD spots out in the sun and close to the front door, but it's actually worse. And even when it's raining, they get wet, you get wet, the car gets wet, everything gets wet. It's just annoying. No one really gives people with disability of any sort due consideration to what they're going through. They just think, here's the spot, there you are, it must be fine now.
And I think that's a real problem with commercial enterprises.
A lot of the parks, they're fine, but it's just commercial enterprises, I think, are the worst offenders for looking after handicapped people.
[00:24:43] Speaker A: You said there at the beginning, Richard, that one of the reasons you took on the role of carer ambassador was so that you can share your learnings, if you like, and to give some advice for others. Can you share with us what some of that advice might be for new carers?
[00:24:57] Speaker D: Especially for new carers, be patient for the person you're looking after, it's a new experience for them, it's a new experience for the carer and patience is the guide.
The person you're looking after is sort of, especially if it suddenly come on, they're trying to become used to their disabilities and learn the best way that they can move around. And then you've got to learn as a carer how to assist them with being able to do that. You know, some of the things, even just, you know, how are you going to set up a toilet for them, a bathroom, any other little ramps and that type of thing. You can't always rely on the Australian standards for ramps or and bathroom fittings. Everything has to be fitted to the person you're looking after. Nothing, nothing matches perfectly. And even when we had our ensuite redone for Gail, the builder was trying to do everything as per the standards, but as per the standards, it was unworkable.
So Especially if you can find a good occupational therapist and you work with the occupational therapist to sort out what's perfect for the patient.
And the other things are sometimes you've got to get out and about in the garden.
At our home, we've put cameras around so my wife can actually see what's happening around the place at any stage. But there are areas where I can't see, she can't see me, just in case I've had an accident or fallen downstairs.
We use two way radios so she can call me if she needs me or if there's something that's a little bit of emergency in the house.
That helps so much in just keeping that communication going around the place so the patient doesn't feel isolated and you're not sort of always having to walk inside the house saying, are you okay?
Do you need anything?
And then you can either especially annoying, I suppose, if they don't need anything, the radio is there so you can keep going with your duties outside, be it gardening, mowing, whatever else. And it just allows for more normality around the household.
[00:27:29] Speaker A: Richard, you spend a lot of your time caring for Gayle.
How do you balance your own interests and your own life within your caring role?
[00:27:37] Speaker D: Well, Gail helped in that respect. Just in case I need something or whatever else, sometimes she'll suggest another outlet or social outlet. So I joined the local men shed, and that's really good. And you go down for about, usually on the Saturdays, spend an hour, hour and a half with the other guys down there.
And a lot of those fellows are single, closer to my age as well. And it's just nice to have a cup of coffee and a chat.
Gale's a great conversationalist and extremely intelligent, but when it comes to wanting to know something more about technical things, equipment, woodworking or whatever else, the men's sheds are a great outlet. And on the other occasion, I spend a couple of hours at Bunnings on the occasional Friday night. I suppose that helps with my customer service skills. I've got the great crew down there at Bunnings at Oxenford to talk to, and we bounce ideas off each other. So there's electricians, plumbers, and everything else. And when you're doing repairs, you can ask them and it makes the work easier. So that little outlet is really good. And then Gail tries to schedule in, if possible, weather permitting, a day out somewhere so she can get out in the sun. And for pretty well, most people that we've known that have had a disability or they've been extremely Ill getting out in the sun. It's like the solar charge. The batteries recharged, they're more invigorated, and then we both get out in the fresh air. So, you know, those little things help a lot rather than just being cooped up inside the house.
[00:29:33] Speaker A: And that must really improve mental health as well, I would imagine.
[00:29:38] Speaker D: Oh, God, yes.
It's good to get out in fresh air and even just to get Gale outside. I'll go out and walk barefoot in the grass and earth myself out. And it's amazing how good that can make you feel.
[00:29:50] Speaker A: How important is mental health in your role, Richard?
[00:29:55] Speaker D: It's extremely important.
When you used to do work that really taxed the mind, being a carer is more like, I can't really say dumbing down, but you can't express yourself like you used to.
So you have to have those other outlets.
Otherwise it just becomes boring.
One of the things we do every single day is have morning tea together, and we do word puzzles and crossword puzzles on the computer. So that gets both our minds going and just sort of keeping us both a bit sharper.
[00:30:40] Speaker A: So.
[00:30:40] Speaker D: So some of these games you can get on the computer are good. Once you've solved the puzzle, I'll go back to it, and then it's the next thing as to how quickly you can do it. So you really got to get your mind sharp. So be it a puzzle on the computer or maybe even some new project, little building, or even the ramps helpful trying to design them and get them around in place. And the ramps we have around here in case we ever had to move to another place, they can be disassembled and taken away and put somewhere else. It just allows for greater mobility and more options to get Gail in and out of the house, especially for safety's sake. If I'm not at home, she can get out of the house on her own. There's for all those people that are mechanically inclined. You can get battery backup, garage door openers. So if we had a blackout or our electrical system caught fire because we've got the solar panels and battery backup to make sure Gail's okay, you can actually, she can just open her office door and slide out straight out the street with safety. So doesn't matter if it's a blackout, she can still get out of the house. So those sorts of things, too. Looking at other options and risk management, put your mind at ease. If I'm away and gone for a couple of hours doing something else or down at shopping, I can sort of rest easy that Gail has options to get out of the house should the worst occur.
[00:32:20] Speaker A: Well, Richard, it's been lovely talking to you today. Thank you so much.
[00:32:24] Speaker D: Thank you Tracy.
[00:32:25] Speaker B: Do you provide unpaid care and support to a family member, partner or friend with Disability? Carers? Queensland is here to support you. We provide advice, information, events and connect you with the local resources within your community to assist you in your caring role. For more information, visit our
[email protected] au and subscribe to our newsletter to keep up to date with our latest news and events.
[00:32:55] Speaker A: Our final interview in this episode is with 57 year old carer Keely from the Sunshine Coast. Keely is mother and carer to her 23 year old son Jacob who lives with autism. I started by asking Keely about how she balances work and life as a carer.
[00:33:12] Speaker C: I always, you know, when he was, he was quite young when the diagnosis came through and I was always worrying about the future, the next thing and feeling as though I had to get it right 100% correct the first time around. So I have to find the right doctors, I have to find the right therapist, I have to find the right primary school and if I don't, then I failed. Everything will be terrible.
So yeah, 20 something years of trying to figure things out for him and I guess I've realized first of all just go with your instinct for what feels right for the person you're caring for. But secondly, if you do something and it doesn't work out or it's not right, that's okay. Just think, okay, plan B.
You don't have to hold yourself to the plan that you initially made to what you thought was going to be the best thing.
When we first came to Australia, we found school. It's a lovely school, lots of my friends, children go there.
It wasn't right for him and I had obsessed things finding the right school and then it was the wrong school, like oh my God, it's the wrong school.
We just moved school and it was okay and he was fine. So I guess give yourself permission to try things and then to just try something else. If it doesn't work, the sky won't fall in.
If it's your child, your child will be okay.
You can just try and sort of try something else and see if that works. And I guess the other thing is particularly, and this is for people who have got little children because this is what I used to worry about.
The future is just going to come no matter what.
And I'm terrible at taking this advice but if you can just try and relax a little bit about it, it's going to be different than you thought it might be for your child. And for us, it has been very different.
But it is still, generally speaking, for him, it's been okay.
Like, he is happy. So he's not the young adult that I thought he was going to be, you know, always years ago when he was born. But he's a very happy young man.
He works part time.
Yeah. So I guess just always realise that you can just change your mind and do something different.
And try not to freak out too much about making the right decision and what's going to happen in the future. Those would be my two tips, because.
[00:36:07] Speaker A: Jacob lives with autism. Is there a particular approach or lessons that you've learned along the way to be the mother of and care for a young person with autism?
[00:36:21] Speaker C: Yeah, a couple of things, I suppose.
[00:36:24] Speaker B: One is.
[00:36:27] Speaker C: Don'T sweat the small stuff. So, for example, we spend a lot of time, things like teaching him to tie his shoelaces and things like that don't matter. He is 23 years old and he wears shoes with Velcro. That's absolutely fine.
The other thing is, some of the challenges actually come from other people's judgment. If you have, you know, a child or a young person who's not behaving typically. So he flaps, he covers his ears, he doesn't make eye contact very often with people.
And again, you know, remember when he was younger, all of this, oh, you know, look at me when I'm speaking to you. Even from therapists occasionally.
And again, none of that matters. You know, there are things that are important and things that are just like social norms, but which don't, you know, it doesn't matter. Particularly.
He will never say hello or goodbye when he answers the phone, because he answers the phone and he'll just start talking. He'll wait for you to talk. And again, you know, like the social conventions, they don't matter so much so long as he's safe and content. So some of the things that we spend a lot of time trying to teach him, he never learned. And it's fine. It doesn't matter at all.
The other thing really is for us, and this is not true for everyone, if I just give him extra time to process things in the different way that he processes things at his pace.
So lots of warning about changes.
[00:38:19] Speaker B: Then usually he.
[00:38:21] Speaker C: Well, he often actually copes very well with change. So we moved countries, for example, which is pretty challenging for anyone. Even that person without autism yeah, he's adaptable and he can learn new things and change. It's just the realization I came to that he just needs way more time and sometimes he'll think about things for a couple of days and then make a decision. And again, that's okay. I mean, obviously not what you want to eat tonight, but some of the big stuff, he just needs time to think about it and process it in his own way. Not on my schedule or anyone else's, essentially.
So working is obviously a real challenge.
I've been fortunate. I've been able to keep working the whole time.
[00:39:15] Speaker B: I'm a nurse.
[00:39:16] Speaker C: So when he was younger and wasn't really able to cope with school very well, I was able to do night shifts the entire time. So I did night shift. I wouldn't really recommend that, but it did mean that we were able to keep my income coming in, which, you know, is really helpful.
Obviously, I have a really supportive husband.
Take my hat off to anyone who's a carer, who's a single parent and trying to juggle work and housing and all that sort of thing alone, because I have someone backing up as well as a really supportive extended family housing.
When we were in rented, we'd been able to buy our own house, but when we were in rented, living with a young person with autism was harder because of, gosh, things like, you know, although he was older, the understanding about dropping things on the carpet, drawing on walls, that sort of thing that you might expect a much younger child to do, which he just developmentally took a long time to learn, that kind of thing. And also, you know, when you've got neighbours that you don't know very well. And again, meltdowns, I guess, would be the big one.
As he's got older, they are few and five are twins. We're really lucky like that. But, you know, you're aware that you're living in someone's house and that if the neighbours complain about this child or this young person is screaming or wailing for hours on end or, you know, they've gone on the walls or something like that, then you're in a bit of a vulnerable situation because it's not your house and you can. You can be asked to leave.
[00:41:06] Speaker A: When you think about National Carers Week coming up, it's part of recognising the role of carers. What does real recognition look like to you?
[00:41:17] Speaker C: More awareness of how challenging it can be to realise that, you know someone you love very, very much like your child, or, you know, a younger brother or Someone like that is always going to need to be looked after.
Even after my husband and I've gone, our son will always need people to look after him.
And that is quite. It's something that all carers parents worry about and two siblings worry about.
I have a sibling who is probably going to need lifelong care as well.
Yeah, I think realising the sort of emotional and psychological challenges that is that you're constantly thinking always about someone else as well as yourself and this is well into their adulthood, not just, you know, wondering how they are or hoping they're well and that sort of thing, but actively planning their life, their support, you know, potentially what they eat, making sure that they're actually physically safe, not to just, you know, happy and well, but that physically, well, you know, aren't going to harm themselves, that sort of thing. And that can be really exhausting.
[00:42:42] Speaker A: To.
[00:42:42] Speaker C: Think about that 247 for someone else. You know, nobody thinks that they'll end up having to worry about another, about their child or another person constantly.
[00:42:56] Speaker A: Keely, you took on the role of carer ambassador. What is it that you wanted to communicate to society? Why did you take on that role?
[00:43:06] Speaker C: That's a really good question.
It was quite spontaneous at the time. I think I must have seen something on the Facebook page asking for Carer ambassadors. Sometimes when you're a carer, it can feel as though other people are making policy decisions more in charge of the time scales of what's happening, I guess. And I thought if I want things to be a little bit different for me and for other carers, then the only way to do that is to put myself forward and say, yep, I will do this. I will let people know what it's like for me, for friends, people I know, members of my family who are carers, just to talk about the challenges that we face. Juggling everything, you know, so the saying, juggling that everybody else does, but with the addition of caring for someone and that can be pretty challenging, intense experience. It can be a little bit isolating. Can often be a bit isolating.
Yes. So I thought, okay, I think I'd like to see if I can make a little bit different, I guess.
[00:44:28] Speaker A: And that was our final interview in this special National Carers Week episode. We hope our carer ambassador stories have offered insight, encouragement and a reminder that care is everywhere.
If you'd like more information about National Carers Week or our Carer Ambassador program, Visit our website carersqld.com Choice and control is a podcast produced by Carers Queensland. Thanks for listening.
