Who carers for the carers? Part 1

Transcript

Chantelle Ellem 00:21

Welcome to Season One of Feros Talks Unsaid, Untold. I am Chantelle Ellem, also known as Fat Mum Slim. In collaboration with aged care and disability service provider Feros Care.

We are here to tell the stories no one else tells, give space to the people who have not previously been heard. Sometimes it is uncomfortable and sometimes it is even controversial, but it is always passionate, interesting and ready to unravel a fresh conversation, shifting the way we see diversity and inclusion in Australia.

As of October 2022, there are more than 2.65 million carers in Australia. That is a lot of people across the country who are providing some form of care and support, aiding family members and loved ones, along with those living with disability, medical conditions, and even mental illness.

To be a carer is a very important role. But it can take a huge toll on health and well-being. And from what we know, it is more key than ever to acknowledge the toll that this can take in many, many different ways.

On today’s episode of Unsaid, Untold, we are speaking with those who have lived experiences carers, and being really candid about the impact it can have, including a story from Kath, who grew up caring for her younger sister, and Heather, who spent many years caring for both her late mother and father. These conversations are quite tough, but also touching. And if you have ever been a carer, or will be a carer at some stage in the life, you will definitely be able to relate.

Hello, Kath, thanks for joining us today. Can you tell us a little bit about your life and the experience of being a carer from a very young age?

Chantelle Ellem 01:58

Hello, Kath. Thanks for joining us today. Can you tell us a little bit about your life and the experience of being a carer from a very young age?

Kath 02:05

Yeah, sure. Hey, thanks for having me on the podcast today. I was born the fourth child of seven kids. My oldest sister, my mom had Rubella when she was pregnant with her. And when Jenny was born, she had a hole in the heart. And she’s legally blind and legally deaf. So that was hard for me in my first privacy [phonetic 02:35] cheese [unintelligible 02:38] I didn’t see a lot of my mom, she was always at the hospital with my sister. So I was brought up by my grandma to start with. Then when I was 12, my younger sister was born. And there was a lot of complications with the birth. And she was born with cerebral palsy. So my whole life I have been around siblings with disabilities. And for me, it was just the way it was. That’s what happened. Probably wasn’t true. In my late teens that I saw what sort of effect it was having on my life, socially, just day to day things that that other people didn’t have to do. As a teenager, I used to be the local babysitter for any kids that had disability. Because it was hard for those parents to be able to find somebody that could look after a child and had an understanding of what the consequences were if something went wrong.

Chantelle Ellem 03:42

[Crosstalk 03:44] Like you grew up a little bit quicker and had that maturity because you had to care from a young age

Kath 03:49

Had to… Yeah, I remember being in high school. So I was 12 when Marianne [phonetic 03:54] was born. I remember being in high school, I would do my assignments on a Saturday when I’m babysit Marianne [phonetic 03:59] my mom got to go do groceries or whatever. And she would just sit there and I would talk away to her and ask her questions, even though she was non-verbal. You know, but I think with her, the gift that she gave me was the ability to be able to communicate with people that couldn’t verbally communicate that. So even though I would never want anybody to ever have to live their life with something like cerebral palsy. For me, she built me up and taught me skills I didn’t even know I was learning. So I adored her. Absolutely adore her. She was just the [unintelligible 04:43]. But she also taught me to look outside the box. I can remember one day watching young kids to jump [unintelligible 04:56] And I looked over at Marianne [phonetic 05:00] and she was crying, silently crying, and it broke my heart, you know? And then I’m like, well, why can’t you do skip rope? [phonetic 05:08]

So I will do over and I said to the girls, you know, you know can she ever go and they’re going how do we do it? I said same as everything else except she can’t jump, I’ll have to wheel away though when you put the rope over. And she did it. And she laughed, and she had fun. And, and thinking about now I’m like, well, I was looking at inclusion, where at the time, it was like, well, what should she missed out? And I was still a teenager at that stage. You know, so…

Chantelle Ellem 05:33

What a beautiful gift for you. [Crosstalk 05:37] so differently at that young age that your peers wouldn’t have had. But [crosstalk]

Kath 05:40

Yeah, that’s right.

Chantelle Ellem 05:40

[Crosstalk] I’d have that.

Kath 05:41

That’s right. And, like making friends in high school, and even when I first left school, I had to leave school in year 11. My father was in the Air Force when we got transferred. And I’d already started high school year 11 where I was, and they wanted me to repeat year 11 and then do year 12. But Mum said that’s okay. You can leave school if you get work. So I got a job. And I looked after Marianne [phonetic 06:12]. So that’s what I did. You know.

Chantelle Ellem 06:15

Oh wow.

Kath 06:17

And I’ve really ever been out of work. Even though I never finished school. I think just a lot of experiences she gave me opened my world up a lot more, but I didn’t move into disability field until I was 30. [Crosstalk]

Chantelle Ellem 06:33

Yeah, really you’ve been working in it your whole life really haven’t you?

Kath 06:36

Yeah.

Chantelle Ellem 06:37

It’s life experience.

Kath 06:38

It’s very different to go into it at a professional level, compared to being an informal support um a very different world [phonetic 06:47].

Chantelle Ellem 06:48

If we go back a little bit, how did it impact your childhood? Like we talked about these little gifts of not understanding inclusivity before your years that, you know, some people don’t learn until they’re in their 40s or late 30s? And what other impacts did it have on your childhood?

Kath 07:03

It had a lot of impacts for me socially, also, being able to do things outside of school. So my older sister, got to learn piano, I never got to learn piano. I was picked for the gymnastics squad at school. I was told I couldn’t do it, because nobody could walk me home from school, and we couldn’t afford to lay it out. Because everything back in those days, there was no NDIS [phonetic 07:32] it was just DSQ [phonetic 07:36] all of the- apart from your main equipment you had to supply yourself. [Phonetic 07:42]

Chantelle Ellem 07:41

Yeah, right. The pressures must have been epic.

Kath 07:44

Well, we were at one wage family as well with seven children. So that was very hard. I look back now. And I wonder how did my mum ever do it? How did she pay those bills? You know, my father was an alcoholic. So that didn’t help. That I just don’t know how she kept those strings tied and kept everything going. We didn’t have a lot. Christmas time; you got clothes, or a new school bag or something like that. We used to have-

Chantelle Ellem 08:13

More practical things.

Kath 08:14

Yeah, yeah, we used to have one thing to the family. So it might be a new board game or something that everybody got to share. Even my grandparents would buy after that practical stuff. You know what I mean? I never got a new bike, like all my friends did. And I never got to go to the movies. I never got to go to concerts. Like all the stuff that you would normally do as a teenager, I never got to do and in the same breath though. I never got the trouble either. You know, I never got caught up in the wrong crowd or anything like that, because I wasn’t able to get into a crowd. So even though I would never change. All that time I spent with my younger sister. I still sometimes regret that I didn’t have what everybody else had growing up.

Chantelle Ellem 08:59

Yeah, that’s what I was gonna ask; Did it feel unfair back then? Or did you have [crosstalk 09:04] of well, this is how it is because of the situation.

Kath 09:06

Yeah, I think I never ever- not took it out on but I never blamed my younger sister for anything. I used to get angry at my older sister. She used to wake me up at 05 o’clock in the morning because we [unintelligible 02:21] so many kids. She’s waking up at 5am in the morning to do her assignment that was due that day, because she was too lazy to get it done beforehand, you know, stuff like that. It was very hard in high school. Being at same school as my older sister. She used to stand out. And even though I was– I wouldn’t say embarrassed by her but I was embarrassed. She was born a grandma [unintelligible 09:47]. You know what I mean? So she didn’t fit in with a lot of kids. It wasn’t so much her eyesight or hearing it was her personality that didn’t– She was never a teenager that way. So I used to shy away from being near her or talking to her at school. But if anybody ever said anything about my younger sister, like my sister was in the air [phonetic 10:12], you know, so even though both of them couldn’t- they were both born that way. I used to take my older sister can stand up for herself, when my younger sister couldn’t.

Chantelle Ellem 10:25

Yeah, she was nonverbal. She needed an advocate constantly.

Kath 10:30

Yeah.

Chantelle Ellem 10:31

So the beautiful thing is, you’ve now gone into a career supporting people who live with disability, tell us what this career is like, and what made you pursue it.

Kath 10:40

I think after my youngest sister passed away, I’d been working retail since I went to school, I wanted to do something better, something more worthwhile. So I applied for a company down in Brisbane. And they put me on casual to start with. And I remember going to a– It was residential housing I was working in that, I remember walking up to this one house, and just feeling anxious as to I’m not going to know how to do this. You know what I mean? And I opened the door. And the lady that answered the door was one of my younger sisters or carers, she used to get two hours a fortnight, it was all we ever got for her. And it was her carer and she looked at me and just gave me this big hug. And she said, “You’re gonna rock this” and I walked into that house, and it was three ladies in wheelchair all nonverbal. And exactly like looking after my younger sister. You know, one of them communicated similar to the way that she used to. So I think people used to sit there and watch me have a conversation with this lady. And I will used to get the [unintelligible 12:00] or laughing. Or I showed other people how to give her choice. Out of the three ladies, two of them were unable to do that. But this one I can remember, like choosing a movie to watch. And I would put two movies up in front of her. She’d look at one, she looked at the other and then she’d look away. And then she’d look back and look at one if she wanted one, or look up at me if she didn’t want either of them. And then we go and get another two movies. I was a huge advocate back then to she can choose, you just got to give her that option. You know, watch, how it’s done?

Chantelle Ellem 12:40

[Crosstalk] Only months to learn. And then you came in with this life experience from your childhood? And it’s like, I’ve got this and you didn’t believe in yourself?

Kath 12:48

Yeah. And I loved working with those ladies. And for me, working with them was making sure I didn’t put them all in the same basket, there were individual people. So I don’t think everybody gets that when they move into this field. Look at the person behind, you know, look at how you can communicate with them, how you can let them have their choice. Choice and control was a dirty word in the DSQ system. People were told what they can have, what they couldn’t have. All that sort of stuff. So the change in those ladies lives now that the NDIS has finally moved in. It was different for me when I moved up to Townsville, as a first time, my first time looking under the NDIS thing. And I’m like, wow, this is incredible. You know, I hated to have to choose for people. I mean, I knew sometimes I had to but even going out to lunch, like we go up to the window and I pointed the things in the window and I’d get sort of like a nod or I think or whatever that that’s the one they wanted, you know.

Kath 14:02

So I don’t know… For me, it felt great to be able to help them have that control. That didn’t have a lot of control over a lot of things in their life. But I gave them as much control as I could. So moving to Townsville [phonetic 14:19] first key position became available. And I’ve been doing in house support and community support with people for 18 years by this age. And my body was starting to tell me so. So it’s just like nurses who was doing long term care in the houses like my back’s not the greatest now, a lot of that I think I put down to we– At home we never had a voice for Marianne. We had to lift her physically. So my mother wasn’t young. She was 40 when she had Marianne, so I, myself and my brothers used to do the lifting. And sleepovers you have got me as a carer like I used to do sleepovers fortnight. So it’s very similar to a nurse [phonetic 15:14]. Yeah, it’s just changing all the time and stuff and the body clock. Yeah. So I applied for the first carer job, I thought I’ve never finished school, I don’t think I’m going to take me you know, but the experience of going to the interview was worth it. And I could not believe it when they put me on. And then

Chantelle Ellem 15:35

[crosstalk] for the job.

Kath 15:36

That’s another kettle of fish that is completely different again from doing the care work, you know, I struggled to start with as an LEC [phonetic 15:44] to be able to write plans, because I was used to writing it as a carer, which is quite different to how you write an NDIS plan. So but fortunately for me, that Community Development Coordinator position came up and I applied, and I got it. I think this is the job I was going to be the whole time. It’s about Lincoln [phonetic 16:08] community building capacity of people to have a better understanding and doing IRC [phonetic 16:10] projects. You know, where we go, I work alongside people with disability with projects and things like that. So I really do think this position I’m in now is a position I was meant to be in.

Chantelle Ellem 16:23

Yeah, it sounds like- You touched on the physical toll that it takes on your body of having to physically, you know, as a kid, you had to do all the lifting- What are the impacts of being a carer? Are they like emotionally and mentally– How has that impacted you as a person over the years?

Kath 16:41

I think, emotionally, for me, it wasn’t so much growing up with the sisters, I think that sort of hit me when I started to do care work within the houses. I did work with people with psychosocial disabilities, who were very physical. I can remember one time being at my doctor’s just for a normal appointment, and bawling my eyes out because I had to go to work last time that day. And in that job, I was at work for a full week, I was leaving for seven days. And I was scared of the personality I was going to pick up that afternoon and she was going to attack [phonetic 17:25] me or not because I was attacked on a daily basis. Yeah. So that for me, took me out of the field altogether. I managed to leave that job. In the back of my mind, I kept thinking, it’s not her fault. She can’t help it. If we stick with it, we can get through this. We can work with the doctors try and make it better because it was terrifying for her when she was in her rages. It wasn’t her, you know, and then she would come out of them and then realize, you know, and be so apologetic. So that’s why I stayed at it for four years. And had to like to [crosstalk]

Kath 17:08

[crosstalk] have empathy for that. Because I see that she’s not wanting to be like that. And that’s just out of her control.

Kath 18:19

Yeah, yeah. And then I went back to my original ladies that I started with. And we’re back to that job. Back to working with my three ladies again. So until I moved on to Townsville, so yeah– I still have another house I’ve worked in had three gentlemen in it. And they were just wonderful. Talk football a lot [unintelligible 18:39]. Get on a topic that they could talk about. We talk about for hours. They still call me.

Chantelle Ellem 18:44

Oh, that’s beautiful. That’s so nice. You meant a lot to them.

Kath 18:47

Yeah. And that could be something happened as a football on the weekend. Yeah, yeah. So they came to Townsville for a holiday not long after I moved up here. And first thing I did was went to the fridge and got a beer out. And I said, What are you doing? And they said, Well, you’re not out here anymore. And I went well, fair enough. Because they used to want to spend time with me out of work, like, meet me down at the club to watch the football, have a beer. And I go, Guys, I’d love to but I’m your carer, I’m paid to be in this position. So there’s that fine line, which is really hard for a lot of people to balance, you know, but once I wasn’t [phonetic 19:24] a carer, they’re like, flats are of [phonetic 19:25] [crosstalk]Yeah. So yeah– No, it’s good.

Chantelle Ellem 19:33

What an impact. So I wanted to talk about a tough topic, which is total burnout. So from a personal experience, I have a daughter who has additional needs as well. So I, being her mom and her care are not the same needs that you had for your sister. But last year, I hit a point where I just hit a total burnout, I just realised it’s being an advocate constantly. You don’t get a choice and it just was- It got to the point where it just was so constant and so big that I just woke up one morning is like, I can’t do another day of this, it’s like, you don’t get a choice, I have to show up, I have to be her voice, I have to show up for her and fight for her and be her everything. So there was a about a month where I just hit it the worst that it was, and I just thought I cannot do this anymore. And you still have to do everything like, it’s a horrible place to be in. And I did lean on everyone, but still look to the core. I know her needs, I know what she needs to move forward and to be the best person that she can be. So I had to show up and I just needed to take a break. Have you ever been in that position where you have just like, I can’t do this anymore, and I need to take care of myself or something needs to change?

Kath 20:50

Definitely the problem is, at the time, they thought of taking care of yourself doesn’t even come into the equation. And it shouldn’t, you know that it didn’t— I faced that several times. I was working full time at Kmart when I was– I started when I was 18. In that job, I used to share a room with my younger sister. So she would ride her teeth all night, you know, because she has acid reflux and stuff. And that’s all I would hear. And I might end up going to work on one hour sleep three days, four days in a row. Because she was up for on your teeth. So you’d have to sit up with her and set her up and give her you know, which I was never angry at her for, you know, it was sometimes I’d go and wake Mum up and say Mum, I need to sleep. You know, so Mum would go into my room and I go sleep on the lounge. You know, because but I think it was just what you did. Like, I would never think, Mum! Can you go and sleep with her? You know, for the next couple nights so I can get some decent sleep? Yeah, I never thought that. And I never thought it was just life. You know. But I found it very hard to recognise when I was getting into burnout as well.

Chantelle Ellem 22:12

Yeah, it hits you, doesn’t it, when you don’t realise you’re that bad?

Kath 22:15

Yeah, I would ignore the signs. And I would just keep going. Even when I was doing the care work, I actually had a full time job. And then somebody else I knew wanted to hear us. So they put me on as like a agency worker. And I used to go to that one too. So I want to say I think I did it two years/seven days. Work seven days a week and every sleepovers and stuff like that. So in the sleepovers, you didn’t get a lot of sleep, not in the house.

Kath 22:46

It’s not a deep sleep treatment.

Kath 22:48

No, I had 70 year old and it was walking past my door 15 times and like going to the toilet, you know. Or another house I have somebody that had very bad seizures and their seizure map would go off during the night because they were having a seizure, stuff like that. So being able to do a sleep over go home and sleep that never worked. But I think that was some of my burnout was just that body clock as well. But not knowing where to stop or not being able to stop. Or if I was working in a house that had brand new stuff in it, and obviously one that had been there longer, like my phone was going constantly or I was going back because one of the girls wouldn’t eat or you know, stuff like that. So where I should be calling the manager saying, this is your problem, but I didn’t I suppose I was thinking I know how to do this better than you do type thing you know, which I shouldn’t have been, but I would drop everything for those ladies. Stay with Marianne, I would stay awake every night if her acid reflux was playing up [phonetic 24:01] because all I’m doing is losing sleep while her stomach is burning. You know? So I suppose I always thought that the other person’s situation was worse than mine. So I’ve got nothing to complain about.

Chantelle Ellem 24:17

Yeah, I like in it to flying the plane. I felt like I was the pilot in everything that we did and I would love to step out of the cockpit and let someone else to fly the plane but no one would fly the plane like I wouldn’t even if I was sitting in the back. And I wanted to have that sleep and rest, I’d just be sitting there going is this, Are we going okay, like is this gonna go where I want it to go-

Kath 24:36

Yeah.

Chantelle Ellem 24:38

But yeah, I don’t know to fly the plane, but it’s my goal to just take a step-

Kath 24:42

Even step back here still want to be making sure it’s okay. Yeah.

Chantelle Ellem 24:47

Yeah. It’s a hard position to be in when you’ve been thrown into that position of carer. And you know what’s best, it’s like,

Kath 24:54

Yeah.

Chantelle Ellem 24:54

And especially like with your daughter, I guess is your family member. Do you trust that person [crosstalk] No one knows and does it like you do.

Kath 25:03

That’s right, unless you know, which is why, like when I was chosen as a babysitter like as a teenager for other families is because they know that I have handled on different things, you know what I mean? With what their child is going through, I’d already faced that before. So it wasn’t new for me, I would freak out. And that my mum was on the other end of the phone if I needed more assistance, but it gave them that opportunity to go out. And I think that’s what a lot of parents forget that they’ve got a relationship with the rest of the family as well. Not just with that child with disability. I think for me, growing up, that was one of my pet peeves, I suppose. Because everything was around my two sisters. My brothers would go off and do stuff with dad, I was like there, I basically grew up feeling like an unpaid carer.

Chantelle Ellem 26:06

It’s an honour and a curse, isn’t it? It’s an honour to be that person that can do that.

Kath 26:09

Yeah. I wonder where I’d be that hadn’t happened, you know, what I mean that? Yeah. I don’t know. It was hard growing out anything special for me, nobody could go along to because they were busy or Marianne had something or Jenny [phonetic 26:29] had something on or whatever, you know, so sorry. Yeah, it was hard to not have [phonetic 26:44] any friends who wanted to go up come over because they didn’t know how to handle.

Chantelle Ellem 26:48

Yeah, your house was complex.

Kath 26:51

Yeah.

Chantelle Ellem 26:54

I have experienced this because– I feel for you because I speak into my own therapist about the needs of my daughter and the challenges that come with that. And I expected her to fully say, I’m worried about your daughter and then- but she said to me, I’m worried about your other daughter, like I’m worried about because she will overcompensate and be the good kid. She doesn’t want to be any trouble because my oldest daughter soaks up all this [phonetic 27:18] time. So it’s like, what pressure is on her being a good kid. So and I hadn’t thought about the parenting a kid without additional needs. And I was great. Now I’ve got something else to worry about. But yeah, I like that awareness. Because I get- I do one on one dating with her. I’ll take her places. And she has the benefit like you did. She’s so empathetic. She’s so caring that no kids her age that I know. I like that she sees the world so differently, which I think is so beautiful. But I also am very aware that I don’t want her to have that, that weight on her shoulders. I want her to feel like she’s seen as well. Because when you have additional needs you take up so much space and time and thought. So it’s a big deal.

Kath 28:01

I am, yeah, yeah. And that’s when I’m working around the community and stuff. There is places like there’s a group up here, I suppose it depends on where you need to, I mean, I think Queensland [phonetic 28:13] there’s a group called the North Queensland borders and support group [phonetic 28:16]. And this was started by a couple of parents, so it’s got bigger and bigger and bigger. They’re the only group I know, that actually thought about siblings. So they have a sibling group that they do things with, which I thought was pretty amazing. Do you know that it is hard, especially as a child, I think teenagers is, you know, teenagers probably the worst spot where you’re going through that whole puberty, you know, hormone changing.

Kath 28:49

I grew up thinking my mother didn’t care about me. My mum doesn’t tie for me. My mum doesn’t have time to listen to me.

Kath 29:00

Yes, I was very much an introvert growing up because nobody was listening [phonetic 29:07].

Chantelle Ellem 29:07

Yeah.

Kath 29:08

Or I felt like nobody cared.

Chantelle Ellem 29:10

Yeah.

Kath 29:11

Because I was only there to look after my sister. You know, so I think nowadays I’m hoping with the support of the NDIS and the other community and a mainstream organizations out there my carers gateways and things like that. You look at young carers out there, so part of carers gateway, they look after the young carers, so teenagers that are looking after parents with a disability and stuff like that, and they will go in I used to [unintelligible 29:45] from Brisbane, I used to go out and I would look after the parent for the day and then they would take- The company would take the children out and give them a really good day without the responsibility of looking after their parents. So there is a lot of that happening in Australia as well where there’s young carers who won’t necessarily reach out and say anything. I can empathize very well with what it feels like. But I want to make sure that they don’t get left behind like I was-

Chantelle Ellem 30:13

Yeah. Make the change.

Kath 30:18

Yeah. Just to realize, hey, there are other kids in the family and they might be okay. But has anyone checked in to make sure they are? Because- I’m not saying the parents don’t care because they love their kids, but they may not realize that that is what is happening.

Chantelle Ellem 30:32

And wouldn’t not have been powerful for you if someone checked in on you and said, Hey, are you okay, I want to just check in on you. This is a lot and how are you doing? And what do you need? And that would have been vital in maybe you being seen or heard-

Kath 30:44

And it would have been nice. Yeah, nice for me to have someone to be able to chat to. I used to chat to one of the mothers of the children I used to babysit. And then she started taking all the information back to mum. And then I was confronted by mom. How do you think you know that you’re being left behind? And how do you think I’m a bad mother? And that wasn’t what I was saying at all. So then, that maybe close [phonetic 31:09] up even more. So not having anywhere to go and talk and empathise.

Chantelle Ellem 31:14

I was [crosstalk]

Kath 31:17

Yeah. I’m talking about like, this all happened, like in the 80s. You know, Mariam [phonetic 31:28] was born in 1980. So he’s happened in the 80s. But even me pushing her in a stroller down the street, the women used to think that she was my baby. I didn’t care. I would happily had, it was my baby, you know, but just, there was a lot of stigma back in those days around disability as well, which I think thankful that the Australians have opened up a lot more and be more inclusive for people with disability, I really only think, that’s really chargeable within the last 10 years. Prior to that, there was still so much stigma, they wouldn’t- if we were in a shopping center on a big table, nobody would come and sit at the same table, as you know, when our people will sit down and chat and talk and, you know, so I think the general public has opened up a lot more, which is easier now for the kids. If you grow up in a family now with a sibling with disability, there’s a lot less stigma around it. Back in my day, I was told I should have been ashamed to be seen in public with her or that sort of stuff. And that never entered my head. The stuff that kids at school used to say was pretty mean. But yeah, I think young carers is something that we possibly need to do more with. Making sure that those kids are not lost. I think a holistic approach around supporting the family, not just the child with disability is another one to focus on. Things like if you wanted to say one of the brothers wanted to play soccer, and then Mum and Dad couldn’t do it, because they may have rather had ASD level three and unable sensory wise to be able to go to like a soccer match. So you may not be able to have a peer-up come and watch you [unintelligible 33:46] because of the family situation. So I think we need to help a lot more in that way. Because that can cause some mental health issues for the siblings that later life.

Chantelle Ellem 33:57

So whether that’s respired care, so that the parents can go and do stuff with the other kids, or if it’s a carer, someone else going, you know, from the community [crosstalk]

Kath 34:05

Or even if there was some of the companies that did, like some group activities on a Saturday, that they would have some carers there. And I know, it’s not about having all the kids with disabilities, like in one spot, to free up the rest, but it’s about them also interacting with other kids with disabilities and maybe learning from those kids, watching them do something and be able to do it, you know, but there could be kids with disabilities in that group as well. I think- I don’t know what the true answer is. But I’m sure is how long to work it out.

Chantelle Ellem 34:38

I think making grounds. I think, like these conversations that we’re having today is helping to get curious and talk about what people need. And I think that’s what made this movement in the last 10 Here’s where we’ve started to get curious about it and find solutions and talk about it and take away the shame and find answers and ask, what do you need? How can we help? So I think that’s so important.

Kath 35:11

That’s right. I mean, yeah, back in the 80s, if you’re born in disability, probably 80% of time you’re put in institution that was never ever going to happen for my sister, I would have given up my life to look after her, if I’d had to. Unfortunately, she passed away at the age of 21. And I still would have photo of her 21st. But by the time she was 18, she ended up having to have a feeding tube in because her muscles weren’t allowing her to eat and drink enough. So we had to go with the feeding tube as well.

Chantelle Ellem 35:49

How has Feros Care supported you throughout your time working for them as a carer?

Kath 35:53

When I started, I didn’t let them fully know that my depression and anxiety obviously, like everybody else, you know, so let it go. I was very anxious when I was at first at LIC, if I get things wrong, I get very upset and stuff. And once I got to know my theme [phonetic 36:18] I was able to open up them once you what [unintelligible 36:26] my issues but you know, what was going on, she would be able to adjust my workload, like adjust what I was doing so that if I was having a really bad anxiety day, she would change it. So I was only doing admin that day and not doing any face to face with participants and things like that. Because it wouldn’t be good for them wasn’t good for me. So she was really good that way, but moving into the CDC role. I don’t even have to say anything anymore. My boss. [Unintelligible 37:01] I’m gonna say her name. It’s so supportive and can read me like a book. You know, and she will know what I need and when I need it.

Chantelle Ellem 37:10

It’s so great and must have felt so far. And to be able to just be so open and talk about it and have someone listen and be like, whatever it is, I’m here to help.

Kath 37:22

Yeah. It’s been great. Like, I think we’re in this position I’m in now. It’s okay to have mental health, which is before that, I never felt like it was okay. It was to me, like, not shameful. But because of my anxieties that bad. I can cry for days. It was taboo. We didn’t talk about it. Yeah, I couldn’t talk to anyone but I can talk to her and I can tell her and even though I’m apologizing the whole time for blubbering. She understands, she listens and then she goes, Well, I think you need a mental health day. You know, I think you need to turn your computer off, and just go and do something. Or she will– If I’m struggling with like a report or something I’ve got to write and it’s just not making sense to me. She will read it over and give me just a couple of hints on where I’ve gone wrong. And sometimes it’s all I need and click off. I don’t know how aware she’s got the training for what she does, but she should be like a psychologist. She’s very, very good.

Chantelle Ellem 38:39

Yeah. I feel like people would say the same about you too, though. Like I don’t know how to read people that are nonverbal, like it’s just maybe that’s just who she is. Because that’s who you are as well. Just an empath and someone that cares and is willing to keep out it just for the [unintelligible 38:58] that person’s well being and because you care so much. And that might be worth how she used to.

Kath 39:02

Yeah, [unintelligible 39:02] when you’re on fire. [unintelligible 39:05]I just kind of like that bar again. Yeah. And sometimes it might take me a week I’ve had an extremely rough 2023 I’ve had three deaths, three funerals, so it’s been a really rough year to me. She has been patient with me through all of it. And I can’t thank her enough for the support that I get from her.

Chantelle Ellem 39:39

Yeah, it’s great to have someone on your side that just wants to see you thrive.

Kath 39:43

Yeah. And my whole team that I working at Feros Care. We’re spread across the nation, that they will reach out, we all check in with each other. We all help each other if I’m struggling with something I know I can tend to one of the main that would have done it before and help each other. I think, without that support of the national team, and the wealth of knowledge and experience in that team is huge. That helps get me through. That helps me a lot. Knowing that my fellow work mates, we only see each other maybe once or twice a year in person. But as a team, we’re very strong. And we’re always out there looking after each other.

Chantelle Ellem 40:31

You know, you’re not alone.

Kath 40:33

Yeah, for sure.

Chantelle Ellem 40:34

So if we finished up on, what advice would you give to other carers that might be struggling?

Kath 40:42

My advice will be don’t be afraid to talk, don’t be afraid to reach out. Even if you have a NDIS planner like if your child or sibling is in the NDIS talk to LIC they will be able to assist you. There is a lot of mainstream stuff out there as well. So like the carers gateway and things like that, please reach out because you going into burnout can affect you for the rest of your life. It’s almost like fatigue syndrome, it keeps reoccurring from time to time, try not to get to that stage. And you will be a better care for the person you’re caring for. Because you will be looking after yourself.

Chantelle Ellem 41:29

Yeah, I think that’s so important.

Kath 41:30

Yeah, if you are a person too just forget 41:33 you are a person too- I think the other thing to remember is to love yourself and not look at yourself as just the person who’s gonna do the jobs.

Chantelle Ellem 41:41

You’re more than that you deserve to be who you are, as well as that carer. [Crosstalk] Dance on the wheelchair. Do the dip.

Kath 41:51

Do it. I’m very big into inclusion, not segregation. So I hate segregation. It’s not good for anybody. But I think having a more inclusive community too will also help like the carers, people are more likely to come up and ask questions than they would have previously. So you just never know that there is places to reach out. So please reach out.

Chantelle Ellem 42:21

Yeah, I’d love talking to you and hearing your story.

Kath 42:25

Thank you.

Chantelle Ellem 42:26

Thank you so much for your time today and for sharing your story and being so open and vulnerable. And

Kath 42:30

Oh, good.

Chantelle Ellem 42:32

I recognise a lot in your story. And I just- I’ve taken a lot away from it. So thank you so much for taking the time today.

Kath 42:38

Oh, good. [unintelligible] Chantelle that makes me happy that you may help you in some little way.

Chantelle Ellem 42:55

Next, on this episode, we’re lucky to be here with Heather who can speak to what it’s like to be in that position of the adult child, the one caring for a parent.

Chantelle Ellem 43:11

Heather can you tell us a little bit about you and your experience as a carer for both your mum and your dad.

Heather 43:16

So I have the rather odd beginning of not been adopted, that being brought up by a different family for the first eight months of my life. And that couple were just absolutely lovely Beth and Jack Chris [phonetic 43:29]. They’ve both gone to God now. But they were just wonderful in their care for mum and dad. Unfortunately, they hadn’t had children of their own at the time. So anytime I cried, they would feed me. So I came back to Mum and Dad looking like a 12 month old rather than an eight month old. Yeah, so I can honestly say to people, I was young, but I was never small

Chantelle Ellem 43:56

And never hungry-

Heather 43:57

And never hungry. That’s true. So throughout mum 84 years, she never was a healthy lady. And I’ve actually had to write down all the ailments that mum had, because I couldn’t remember them all in a list off the top of my head. So she had rheumatoid arthritis. She had [unintelligible 44:19], she had kidney cancer. This is in her 84 years not all at the same time. She had kidney cancer and an operation that took out one and a third kidneys. So mum lived for 45 years after that, on two thirds of one kidney without dialysis. She had operations. She never had chemotherapy or radiation for either of the cancers that she had. One was renal cancer through the kidneys, and the other one was breast cancer. So my mum had a full mastectomy on one side and then had a partial mastectomy in the same area again it started to grow back.

So yeah, she wasn’t a well lady. She also on top of the rheumatoid arthritis had osteoarthritis, she suffered debilitating migraines to the point where they would have to have her in a darkened room and knock her out basically with this little injection that the doctor called her cocktail. So they’d come in and give mom this cocktail that would knock her out for about 12 hours or she would be not only a thumping headache, but she’d be vomiting and yet, she wasn’t a little late.

She had fibromyalgia which caused muscle spasms, and she also had osteoporosis for probably about 15 to 20 years. Last years of her life, she got Parkinson’s disease about 15 years before she died. And then was eventually passed away with Lewy body dementia. [Crosstalk]

Chantelle Ellem 46:14

She had such a journey.

Heather 46:14

Yeah, she did have a long journey, long, long journey. But thankfully, ddd didn’t have the same sort of health issues as mum did. And because of that, he was her primary carer really is full time job was being a pastor and he had hundreds of people in his congregation. It wasn’t just that it was a small church. And he was also sort of always called upon to help people that were going through tough times because they knew that dad knew what it was like to go through those sorts of experiences. So up until the age of 86, dad was a full time pastor. He had a very strong Irish accent because Mum and dad both came out from Belfast, and it took them an awful long time to sort of shake the Irishness, dad loved being in Australia Mum did too. But dad knew that this was home for him as soon as he put his first foot down on Australian soil. He knew that this was home for him. Mum came two years later, they were actually engaged in Ireland. And then two years afterwards, mum came out on a ship with no relatives here at all apart from the man she was about to marry.

So it was quite a courageous move. And I think that’s the generation of great courage. The generation that we are now saying goodbye to actually which is really kind of sad when you think about it. So anyway, dad went back to I’m good at getting distracted Chantelle, so pull me back [crosstalk 48:10] Okay, makes you emotional, too.

So anyway, dad was a pastor until he was 86. He was a pastor for a year after mums passing. And he was in the pulpit one day, he’d given his last sermon. And he was in the middle of singing with his very strong Irish accent, the last him [phonetic 48:34] when suddenly slumped to the ground. And someone in the congregation was a theatre nurse, thankfully, who wasn’t there every week, but she was there because of the job that she was there that particular day. So that was wonderful. She ran forward, they rang an ambulance. And long story short, dad ended up having a triple bypass at the age of 86. Unfortunately, the bypass started to leak.

Chantelle Ellem 48:13

Yeah.

Heather 49:05

So within 12 hours, they had to give him another anaesthetic and open up to a full chest opening again, to find out where it was leaking from so severely, because if they hadn’t a repair that he would have played out, so there was no choice but to have a second operation. So that 60s plumbing of his heart, but within a week his electricals went berserk. As he was walking around the ward, his electrical service heart started malfunctioning, he had to sit down and ended up having another operation to put in the pacemaker. So at the end of all that Chantelle he ended up getting vascular [phonetic 49:59] dementia.

Chantelle Ellem 50:00

All right.

Heather 50:02

And so came to live with us. As I first mentioned, dad was pretty healthy right up until he was older. The only ailment I actually remember dad ever having was something called Labyrinthitis, which is like a middle ear infection, that when it hits you, you have got to hold on to something or you will fall to the ground.

Chantel Elam 50:24

Or you cannot balance.

Heather 50:25

Yes, you just cannot balance. So that made it interesting for dad because being a pastor, he was found walking past a pub in Hurstville, when suddenly he got a bout of Labyrinthitis, grabbed onto a pole and slumped to the ground in front of the pub. So, I think Dad was more concerned about people in his congregation walking past at the time than he ever was about, about his own health.

Chantel Elam 50:52

The actual ailment.

Heather 50:54

Yes, the actual ailment. So, mum and dad did not actually share the same sort of health issues. But they did share the same set family tragedies and sadness.

Chantel Elam 51:09

Can you share any stories or insights into the impact of being a carer has had on you? Like, I know that you have had a long string of years without having a break. How has that impacted you physically, emotionally and even mentally?

Heather 51:24

Physically, I can say being a carer does nothing for your waistline. It is it is very, sort of sitting in the one place not doing a whole lot type of activity, especially when dad now has to have 24-hour care and someone in the house 24/7. That just means that one of the two of us, my husband, who’s been a fantastic help to me, Andrew, not just with computers, to put us on today, but also, but also with the care for dad. He’s been just tremendous and I truly could not do it without him. So, I am very grateful for him. But being stuck indoors, most of the time, you realise that you are, you really appreciate the people who come to support you and help you. It is a good idea physically to be able to get out and do something like gardening or go for a walk or, you know, do something that stimulates you and stimulates your brain. As far as emotional and mental. I am going to put those two together. Because for me, they do go together,

Chantel Elam 52:49

Knowing what you know now, after all these years, what advice do you have for other carers who may be struggling or need a bit more support?

Heather 52:56

I would say always be thankful for the privilege of being a carer. It is what I call a heavy privilege. It is certainly most certainly a privilege. But it is never light. It is never something that is easy to do. So that is where I got that saying, for me, it is a heavy privilege. Because as you care for someone, in my own case, with mum with dementia and dead now with dementia, you actually see them every now and again, take a plateau down. And, and basically there, it is the long slow goodbye as someone described dementia. And I think that is really true. It is the long, slow goodbye. And that can be debilitating when you are looking at it each day. So,

Chantel Elam 53:55

Yes.

Heather 53:55

That is where I find my strength in my faith during times like that, so do not allow yourself to focus too much on yourself and go into those dark places. Give yourself time, some time off. Thankfully, I have got people now who come and help me twice a week, they will come for an hour and give dad personal care, like showering that sort of thing. And during that time, I will either go for a walk or ring a friend or go on Facebook or you know sort of do an email something that I can actually contact with others and more importantly, contact with God for me.

So if I go outside and sit under a tree, the best advice I can give to other people is make the book that you read the Bible, because it will introduce you. It is a, it is an amazing book and it is an it is a book that will introduce you to a friend who is far more amazing than any other. And you can also call upon it anytime and always there, absolutely.

Chantel Elam 55:17

Are there any particular moments that really stand out to you as making all your efforts as a carer worth it?

Heather 55:24

Yes, there is a couple of moments that really stood out to me. I do not know if you have ever seen the movie called The Notebook.

Chantel Elam 55:31

Yes, I love The Notebook.

Heather 55:35

Yes, okay. But there is couple of times in that, where the lady suddenly becomes crystal clear, and is able to speak to the man opposite her. We are not giving away any storyline here. Crystal in a crystal-clear fashion, which is more than I can do at the moment. And yes basically like, what she used to be.

And I have had two experiences of that with dad, during the six now coming on to the seventh year of caring for him, where he’s just become crystal clear all of a sudden, and I was able to talk to him about is, does he have any needs? Is there anything more we could do for him? And thankfully, both answers to that was, beautiful as dad always is, no, you are doing a wonderful job. Yes, that is lovely to hear. And we talked to him about his funeral, we talked to him about having things that would be encouraging to him. And I think that is, that is something that was just beautiful moments for me to have that gift of that notebook time, as I call it.

As dad’s falling further into dementia, those times have stopped. But just a couple of weeks ago, there was a moment that went from after sadness, to another encouraging moment, when dad turned to me and said, am I right in thinking that you go by the name of Jennifer? And I said, No, Dad, Jennifer’s another person. My name is Heather. And said, I know you like that name. Because that I know, dad named me. So, I knew we liked the name Heather. And he ended up saying, hold on. Yes, I have, sorry Chantel, I have a Heather in my life. I have a Heather in my life and I do not know what to do without her.

So when he said that, I thought, wow, it is gone from a moment where I had to remind myself, you do not know me but I know you, to a moment when he actually, I guess verified everything that I was trying to do for him. And the great privilege it was to care for him. So that is, that is my two moments.

Chantel Elam 58:23

So beautiful. Yes.

Heather 58:25

Yes, that was that was really lovely. And great gift to hear that from dad himself. But part of why I did not say no, you are wrong, or I am not Jennifer, I am Heather, your daughter. Is because and this will probably come out later. I have learned to try and keep the atmosphere around someone with dementia positive, not to negatively correct them. But as dad said, when mum had dementia, he was clear thinking he was not suffering dementia at that time. And he said, Heather, I think we need to enter her world. We need to do things in a positive way and speak to her in a positive way. Do not overly correct and I have found that to be the greatest piece of advice for someone who is caring for someone with dementia.

You can also find hysterically wonderful moments amongst caring for someone with dementia. It is not all necessarily negative. Yes, one of the moments that I used to SMS my niece every now and again and tell her the wonders of caring for her grandma that particular day. And one day we were walking through Westfield at Penrith we’d gone out that way and suddenly mum’s, I do not know if I should say this in public but, mums the elastic in mum’s underwear collapsed. And so her undies was suddenly around her ankles. So naturally we found the nearest seat we could and sat down. And I SMS my niece saying, okay, what are we doing now? So, [phonetics 1:00:28] which was only kidding. So basically, took the undies off, chuck them into a shopping bag and tried to find the nearest lift, because I thought escalators might be a little too excited for the locals. So yes, a bit dangerous.

So, you know, every now and again, you get these amazing moments that you have to live through. But and sometimes they are comical, and sometimes they are not.

Chantel Elam 1:00:55

I love how you describe it as a as a heavy privilege to be a carer, that It is, I will not say it is a burden, but it is heavy. But I love the way that you described it as a heavy privilege because you would not want anyone else to do it and it is such an important role to play. Thank you so much for coming on and sharing your story and sharing more about your life being a carer. And I am so sorry for all the heartbreak throughout your life, but I love your attitude towards it all and just that love shines through and the love that you have for your parents. So, thank you so much for sharing that with us.

Heather 1:01:32

Thank you, I appreciate that, yes.

Chantel Elam 1:01:34

Thank you, bye. Since recording sadly, Heather’s dad has passed away. So, we wanted to send our condolences from the Fares Care family and also gratitude to Heather for sharing her story.

1:01:57

Thank you so much for joining us for today’s episode of Unsaid, Untold and that was just part one. We had so many insights and conversations from our carers that part two is definitely on its way. But in the meantime, Feros Care pulled together carers guide which is an incredible resource for carers looking for more support and understanding. You can find it via feroscare.com.au/podcast. Chat to you next time on ‘Unsaid, Untold’.

Disclaimer: The content and views discussed in Feros Talks podcast episode are those of the individuals involved. They are not necessarily condoned by, or, are the views of Feros Care or its employees.