Who cares for the carers? Part 2

Transcript

Ep_2_Part 2_V4_1.08

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.

Today is part two of who cares for the carers? We’re not only hearing a very touching story from Wendy, who has been a carer for her son for many years. We’re also hearing from Ben, who offers a clinical perspective on what carers can do to seek more support. Wendy, your plate is very full. Can you tell us a little bit about yourself and your history as an informal carer?

Wendy 01:22

I’ve been involved I guess, with the disability sector for about 30 years. Since the birth of our youngest child, Liam. He was one of these babies that you don’t know that you were having because I was 23 weeks gestation when I found out that I was having him and it was a bit of excitement because I thought wow, in 17 weeks, I’m going to have a baby, that was easy and he was the smallest of my children.

I remember every time I went to the hospital, they told me oh, this baby’s really quite smaller than your other two children because my first child, he was 9.3, my second child, she was 9.13 so she was a big one and then to go down to a 7. What was he? 7 pounds 9 ounces. That was a big difference but I just kind of thought, Oh, that’s nice. I’m going to actually have a baby. Yes. So we took him home. I thought it was really wonderful to have this beautiful baby and then– We then discovered that he wasn’t reaching the milestones that your average baby does, or that Daniel and Ellie were doing and that went on for about 10 months and every time I went to the doctor, he said, don’t compare, it’ll be fine and then I was having a conversation with one of my sisters, and she said, oh, just take him to see a pediatrician. So that’s what I did and within three minutes, this well-known pediatrician from the [unintelligible 00:03:16], he’s either deaf, dumb, blind or all three. So that was the start of our journey. He said, here’s a whole heap of paperwork, go and have all these tests.

Chantelle Ellem 03:28

How scary.

Wendy 03:31

And I was with the girlfriend of mine, and she was a midwife because [unintelligible 00:03:38] had to work this particular day and I walked out of there thinking, Oh, no, my poor little boy went down the path of all the tests and it came out that Liam had a strike in you uterus at three months. So he was one of these babies that should have miscarried, but didn’t. There was something within his soul or spirit that said another survivor around.

Chantelle Ellem 04:12

Yes.

Wendy 04:13

So we did the CAT scans, hearing scans, the vision scans and all that sort of stuff and it came out that year that he had the stroke and anyway, as a result of that, Liam now lives with cerebral palsy on the left hand side of his body. He has epilepsy, he has autism, intellectual impairment, a vision impairment and he is nonverbal but he is wonderful.

Chantelle Ellem 04:49

Yes.

Wendy 04:50

I always believed that I was going to love him as my child first, as opposed to addressing or focusing only his–

Chantelle Ellem 05:01

Diagnosis.

Wendy 05:02

Yes. So that’s pretty much what we did and it had a pretty big impact on our family, because I still had two other kids that I needed to love and nurture as well. So but a little bit down the tracks, I think it was probably about three or four months later, after I got been enrolled with Disability Services, Queensland as they were known back in the day and seeing all the therapists that they had and stuff like that. There was something in me thinking, this isn’t all that I’m supposed to be doing.

So I actually have a girlfriend that lives down the road from us and she was having a visit from a friend of hers who was also the mother of a child with a disability and Gina actually said, why don’t you come down and meet Julie, and her son, Nick. So that’s what I did anyway. I had discussion with Julie and she was telling me that she was doing an alternative program, which was based out of a program from the United States, and it was an organization called the Australian Institute for the development of human potential and so they were about doing alternative diversive therapies. So and she said, they just happen to be coming up to Queensland next week. So we were able to get in contact with them and have an appointment.

So that resulted in four years of doing alternative therapy for Liam.

Chantelle Ellem 06:48

How old was he then?

Wendy 06:49

He was probably about 18 months.

Chantelle Ellem 06:52

All right, so still quite young.

Wendy 06:54

Yes and Springbrook being Springbrook, nice community group. Community, we had a friend of ours, and she gathered up 50 of the locals for us to assist us doing his program and his program was pretty intensive and physical and all that sort of stuff. We did a thing called patterning, which imitates how the normal human walks.

Chantelle Ellem 07:26

Yes.

Wendy 07:27

And so we’d have to put him on a table, and we’d have two people on either side of the table and me at the head, doing all the physical stuff, and we did intelligence programs, and reading programs, and all that sort of stuff and after four years, we decided to have a little bit of a break but we had achieved him actually walking and running and being cheeky, when we were originally told, just take him home and love him. Yes, because he’s never going to achieve anything. So it was a little bit of a iffy situation as far as we were concerned, so, but I also at the same time, still had to do this stuff with Daniel and Ellie, and they would have three lots of people coming in a day to their home where and they had to be nice to the people. So, but I made sure that as we were doing the program, and forever since, that I always had quality time with him.

Chantelle Ellem 08:34

Yes, and that is exhausting too. Isn’t it like having to because you want to make everything great for Liam and then you’ve also got to make sure that the others are taken care of as well, because I have a daughter that has ADHD, so it’s not on the same level at all but I do get that caring about the one that is neurotypical or whatever. It doesn’t need as much help.

Wendy 08:56

Yes and it was interesting, because I always encourage the kids to invite their friends up.

Chantelle Ellem 09:02

Yes.

Wendy 09:03

And all these kids are now in their 30s and they’re still involved in our lives, which is lovely and one of them said to me a couple of years ago, thank you for letting us be part of Liam’s life.

Chantelle Ellem 09:19

Yes.

Wendy 09:20

And these guys also would include Liam in their activities. Liam, would very much smooch up to all of Ellie’s friends, because they’re all gorgeous women and so he’d flatter his eyelashes at him and they’d giggle at him and it was just wonderful. So I think we’ve turned a whole heap of other people into really accepting nurturing people as well.

Chantelle Ellem 09:48

And advocates and inclusive warriors like they will fight for other people.

Wendy 09:51

Absolutely.

Chantelle Ellem 09:51

That’s a gift.

Wendy 09:54

That’s who I am. Yes, a little bit of where we’ve come from you.

Chantelle Ellem 10:00

Yes.

Wendy 10:00

As far as Liam’s concerned, so.

Chantelle Ellem 10:03

And how old is Liam now?

Wendy 10:04

Liam will be 30 in June?

Chantelle Ellem 10:06

Oh, wow, milestone birthday.

Wendy 10:09

So, Ellie’s already off organizing all these different things that we can do for him. So she’s pretty amazing. Well, they’re both pretty amazing, because she’s also turned out to be his additional nominee when it comes to the NDIS and Centrelink and all that sort of stuff.

Chantelle Ellem 10:30

Yes. Great bunch of kids and so you’ve gone on, not surprisingly, onto a career of supporting people who live with disability.

Wendy 10:38

Yes.

Chantelle Ellem 10:39

And bringing communities together to shift perceptions around people who live with disability. Can you tell me a little bit more about your career? And what you do? And what made you pursue it? Which I can kind of guess is, had that drive in you, that fire in you from when Liam was born.

Wendy 10:54

When Liam got to school age, and we had had lots of visits from, visiting teachers and different therapists that came to the house and all that sort of stuff and they actually, asked me initially, did I want to send Liam to school? And I basically said, I don’t think so. I don’t think anyone could take, better care of him than I can. Anyway, so, they spent a little bit of time, convincing me that it was probably good for him and it was probably a good thing for us as a family, because we were starting to feel really burnt out, yes, having, done the four years of very intensive stuff.

Chantelle Ellem 11:40

Intensive therapies.

Wendy 11:41

So there was, the local special school down the mountain, so we decided to actually, go to that particular school and me being me, wanting to find out all I could, , I became pretty involved in the school.

Chantelle Ellem 11:57

Was it a mainstream school or a special school?

Wendy 11:59

No, it’s a special school and I became involved, with the PNC and whatever workshops they had on offer, I did, and there was this one organization on the coast that ran like a parent’s group. There would be regularly 12 of us, go to this, this group, and Tracy, who was our coordinator of that particular group told us about this workshop that was happening about basic helping and supporting skills, and I thought, I might learn something from that. So went along to that, and that was 8 way weeks course, all together and basically, it helped you, support other people. Yes and I, they actually approached me after it and asked me if I would be interested in doing the train the trainer, and I said, Sure, and that connected us through not to an organization called Parent to Parent, Queensland, OK.

That parent to parent Queensland back in the day was solely focused on supporting the carers, and everything, that revolves around, what a carer might have to look at, or want to get involved in, within the community and so I became the local Gold Coast coordinator for that organization and I was really fortunate, I met some amazing, amazing, facilitators, from Australia and the Gulf, the, the Gulf Coast and in fact the world Yes, I was actually enough to come across through my time. John O’Brien and Jack people who are the world leaders in person centered thinking, they were the ones that introduced the concept to the world and I got the opportunity to learn things. There’s one visual tool called the path which stands for planning alternative tomorrow’s with hope.

I did the training did the train the trainer I’ve gone on to, support families and organizations about developing those, the people’s futures and stuff like that. I through my contacts with the school and then went on to do paths, for the kids at school, which is now gone Queensland wide. Every special school in Queensland facilitates paths for their students that are in their later years, from year 10 onwards so that they have a bit of a direction as to where they go to in the future and I’ve also, have done training around what they call Essential Lifestyle planning and that is telling the story of who the person is.

Chantelle Ellem 15:15

Yes.

Wendy 15:16

And taking the time with the carers to get it right.

Chantelle Ellem 15:19

Yes,.

Wendy 15:21

So, I’ve, I guess I’ve had a lot of friendships from those families and, that have had the opportunity to have them done, and they say, oh, Wendy, it’s great. It really captures who my son or daughter is. Yes because, as you would know, we’re all used to this tick and flick.

Chantelle Ellem 15:42

Yes, the list of who the diagnosis. Yes. The limitations, yes they do.

Wendy 15:47

But this plan looks at what they can do? What’s important to them? What’s important to the family?

Chantelle Ellem 15:53

Yes.

Wendy 15:53

Very often, families aren’t asked what’s important to them. So it’s kind of, become a bit of a passion about getting things right.

Chantelle Ellem 16:02

Yes.

Wendy 16:03

For not only the individual, but for the family.

Chantelle Ellem 16:06

Yes, and from the heart, like, it feels really heart driven that this is, your purpose is from your heart.

Wendy 16:14

And so, also with Parent to Parent, I was given the opportunity to go and do those things out in rural and remote areas up as far as, Thursday Island.

Chantelle Ellem 16:28

Oh, wow.

Wendy 16:29

Out to places like, Charters Towers and all that sort of stuff. So, I was a bit of a traveling Wilbury but I was lucky because Leo was really, accepting of that. He said, do whatever you need to do.

Chantelle Ellem 16:48

Yes.

Wendy 16:49

Because those families probably need it as well.

Chantelle Ellem 16:51

Yes, definitely.

Wendy 16:52

So and then the NDI– Oh, I worked at the school, too. So that developed into what they called a community liaison officer.

Chantelle Ellem 16:54

Yes.

Wendy 16:54

So I was there for the families to come and talk to, because some families were feeling really quite afraid to talk to the principal, or talk to their teacher or whatever. So they could come and talk to me and then I would seek answers from, the principals or the teachers to their questions they were watching. So and I also– We introduce the paths into the school, we introduced the Essential Lifestyle plans into the school, we organized expos where we had services come in, and that the families could just, roam around, and talk to them.

Chantelle Ellem 17:49

Yes.

Wendy 17:50

So anything that was I was able to do for the families, I would do. Like, the biggest coup for me really was having Tony Atwood come in, and having to send people away because we didn’t have enough seats. , Tony Atwood been the guru of autism and Aspergillus, and all that sort of stuff. So, that was great. So, I did that for 10 years, as well, so I was doing both jobs during the week and then the NDIS came into play, and I, did another little tour around the state telling people what the NDIS was going to be able to give them and then I thought, Oh, I might join the NDIS and try and change, their perspective about what it was that carers were needing and what they, the bureaucrats should think about.

Chantelle Ellem 18:57

From someone that’s in it. Yes.

Wendy 18:59

And but it turned out to be a whole different kettle of fish. , I was there to, take the information from the families and put it into the computer and it generated what they were going to fund them for. Yes and I did that for six months and I also did the same thing at Cairns Queensland. Similar questions, similar points of views, and I just kind of thought, I’m really missing the fact that I need to get back to the carrier side of things. Sitting at a computer, putting numbers and comments just wasn’t my thing.

Chantelle Ellem 19:45

Didn’t feel like it was making as much a difference with–

Wendy 19:47

Yes.

Chantelle Ellem 19:48

As being with people and hearing their stories and seeing what they need.

Wendy 19:51

So I took six months off after that, because I was feeling quite drained.

Chantelle Ellem 19:57

Yes.

Wendy 19:59

And so, for the last couple of years, I’ve just gone back to Grassroots and working with families wherever possible, but predominantly, doing support work.

Chantelle Ellem 20:13

Yes. OK.

Wendy 20:15

But I’m, in their time with also had transitional things happen for Liam, from school to community, community to everyday living and we decided– I decided, I guess by the time I was 60, I was going to have a clear in my mind what Liam was going to do from there. Yes. Was he going to stay home with us? Was he going to move out? Anyway, Liam has moved out.

Chantelle Ellem 20:47

All right.

Wendy 20:49

Took us two years to get into that place and we’ve found on , we’ve been through a few services, a few providers, but we’ve finally found this beautiful little boutique service that has taking care of our boy and is extremely happy.

Chantelle Ellem 21:11

Amazing.

Wendy 21:12

Yes, he’s with them probably about five days a week and then he comes home to us on the weekends, because that’s when we all get together.

Chantelle Ellem 21:20

Yes.

Wendy 21:21

So it’s just nice. Fingers crossed, that he has a good life.

Chantelle Ellem 21:27

Yes.

Wendy 21:29

Because I wanted the same in the independence that Dan and Ellie have, wanted it for him.

Chantelle Ellem 21:38

And he’s getting that.

Wendy 21:40

So that’s where we’re at now, with him.

Chantelle Ellem 21:43

And you can see that shift in him as well, that he’s really loving it.

Wendy 21:47

He is really loving it but you can see that he’s happy to come home on the way because that’s balance because, we’re going to always spoil him.

Chantelle Ellem 21:56

Yes.

Wendy 21:57

And I don’t know if you get chocolates or anything at this place but he certainly takes advantage of knowing where the chocolate boxes is at our house.

Chantelle Ellem 22:06

Yes, he knows there’s always be chocolates at home.

Wendy 22:12

So yes, that’s pretty much the reason that I, took the career that I have,

Chantelle Ellem 22:20

It sounds like you actually couldn’t not do this, like it’s so in you isn’t it like, get that that drive to be that advocate.

Wendy 22:27

Absolutely, and my parents were always very community minded. So it was just instilled in me, I guess, you do what you can.

Chantelle Ellem 22:37

Get your hands dirty, get in and make change. Yes and boy, I bet you’ve made so many changes to so many families.

Wendy 22:43

I hope so but , I really proud of the fact that Education Queensland took the route, that what we were offering at that time with the paths and are now using it.

Chantelle Ellem 22:58

Yes.

Wendy 22:58

So, what a legacy.

Chantelle Ellem 23:02

Yes, that has to kind of leave a bit of a toll on you too, though, like being that fight as well as you’re not, you’ve already got something going on at home, like you’re having to be a carer at home, but also then you’re going to fight for other people as well and be a voice for them. What kind of toll does that take on you emotionally, physically, mentally? And have you ever hit a point where you have complete burnout or need just happy to point where you can’t do anymore?

Wendy 23:27

I think having such a great family was a really good thing for me, because I knew that they were behind me in whatever I wanted to do.

Chantelle Ellem 23:41

Yes.

Wendy 23:42

I– My husband said to me a couple of months ago, he goes, remember when I first met you and you told me something? What was it? And I said, I don’t know, that was a hell of a long time ago and he said, You always said that you wanted to work with people but in particular, you wanted to do work with the indigenous community. You said, you’ve done that, and I said, I have and he goes, the thing that I like about you is you just do things. There’s no real personal gain that you want. You just want people to have good lives. So it’s always been that to me but yes, I have to say, the last period of Liam’s life, which is , giving him organized to move out has been the most difficult.

Chantelle Ellem 24:39

Yes.

Wendy 24:40

Letting go and that.

Chantelle Ellem 24:42

Absolutely, yes.

Wendy 24:44

And making sure that, people were really going to take care of him.

Chantelle Ellem 24:49

Because no one can do it like you can and that’s putting a lot of trust in them to, love him and care for him the way that you would, at least to a certain extent.

Wendy 24:57

And I have always had the thought of– I didn’t want Daniel and Ellie to feel as though they needed to take him in.

Chantelle Ellem 25:08

Yes.

Wendy 25:09

And be his carers once Leo and I aren’t here.

Chantelle Ellem 25:12

Yes.

Wendy 25:13

And I think we’ve achieved that. They’re still very active in his life and stuff like that. So having them, be as involved in Liam’s life has been wonderful, but not to the point that they feel burdened.

Chantelle Ellem 25:30

Yes, and they’ve got options moving forward, that they don’t have to be his everything, but he can be, they can still be at play a big part and have ave their lives as well.

Wendy 25:39

Yes, and that’s has been a pretty big driving force for me, but I guess, there have been times where I’ve just had to stop, go to the beach for a couple of hours or, listen to music or have some alone time, always remembering that I need to have thinking time, or I made decisions for him. So, and that it wasn’t just all me that I need to think of I needed to, be aware of everybody in the family, and how that was going to affect.

Chantelle Ellem 26:17

Yes, sounds like you’ve done that really beautifully.

Wendy 26:21

Well, I hope so.

Chantelle Ellem 26:22

Yes. It just feels like it’s so considerate and we’re done with such love for everybody. So well done on navigating that because it’s not easy, I’m sure.

Wendy 26:33

Yes, but I still have a bit of a, well, not still, but I have a passion still for other carers and making sure that they’re OK.

Chantelle Ellem 26:43

Yes.

Wendy 26:43

What I would really like to do is stuff like this, Chantelle. Have conversations again, with families, about what life has been like for them.

Chantelle Ellem 26:54

Yes.

Wendy 26:55

How else do you think what else do you think that, you would need and all that sort of stuff. Maybe having, regular podcasts? Maybe having, like, the thought came to me the other day is, how there’s the almost like the and I don’t want to say but I will say the lifeline model where, families have somewhere to call into? Or is it that, there’s a phone number that would be available for them to call into, but also a team of people that could call on carers, either personally, or over the phone and just say, how you doing?

Chantelle Ellem 27:41

Yes, I so see the need for that, like, even in the Facebook groups that I’m in. There are parents, especially moms at breaking point, and it’s like it is breaking point, because they just said, I cannot do this anymore because of the weight of it’s not just the day to day stuff. It’s like, well, what does the future look like? I don’t know what it’s actually all consuming, and so hard and I totally agree. I think that’s such a great idea. We do need something where they can just call and say I am struggling, I need help and just to be heard and seen because it is such an isolating role to be in, isn’t it? You do feel like everyone else is living these lives that they’ve got their shit sorted and then, you’re at home and it’s hard.

Wendy 28:26

Yes and I think also too, there’s so much competition between the different services for doing the support for our family members and stuff like that but those services really need to listen to the carers. Yes, because, as we know, carers are the ones that do the day to day everyday stuff and, we really need to listen, but listen again, to what they’re saying. What carers are going through and stuff like that?

Chantelle Ellem 29:05

Yes, constant support, not just a one off, check in.

Wendy 29:08

Yes and that we’ve got brains, like, I can remember going to appointments and, if I had taken a friend in with me or something, the professional would look at that person and talk to them as opposed to talking to me telling that that support person, or it’d be really good if you could be there for Wendy, she might need you. Hello–

Chantelle Ellem 29:31

I’m right here. Yes.

Wendy 29:33

And it’s the same when they’re dealing with their family members. Talk to them.

Chantelle Ellem 29:38

Yes.

Wendy 29:40

Liam understands absolutely everything that’s, going on, he just can’t articulate.

Chantelle Ellem 29:47

Verbalize it. Yes.

Wendy 29:49

So, yes. I kind of think that’s what, people really need to focus on.

Chantelle Ellem 29:56

The human to human and treating people respect and dignity that yes, I’m a carer. Yes, I’m over– overloaded, but yes, I’m here and I can hear.

Wendy 30:09

That’s, what I’m passionate about. There’s probably thousand other things that, I could probably, talk about, but yes, just gets a bit all-consuming sometimes.

Chantelle Ellem 30:23

Yes, definitely and I guess you’ve dealt with a lot of families over the years. When it comes to wellbeing and caring for yourself, what advice have you given those families and those parents of how to look after themselves? And what advice would you give them for any carer out there that is struggling?

Wendy 30:44

I think the advice that I would give them is congratulate yourself. , you’ve had some, you’ve probably had some wonderful successes.

Chantelle Ellem 30:54

Yes.

Wendy 30:55

And that’s no mean feat.

Chantelle Ellem 30:57

Yes.

Wendy 30:59

Have some time to yourself, go to the beach, go swimming, do whatever you can in those free moments that you have. Always speak up.

Chantelle Ellem 31:14

Yes.

Wendy 31:16

About what’s happening in your life, your child’s life, really hone in on those advocacy skills that you have. Tell your story as often as you can.

Chantelle Ellem 31:27

Yes.

Wendy 31:29

And remember the love your little, not so little, person and nurture your the rest of your family.

Chantelle Ellem 31:39

Yes.

Wendy 31:40

And have some fun.

Chantelle Ellem 31:42

Yes.

Wendy 31:43

And a few glasses of wine on the way.

Chantelle Ellem 31:45

And dye your pair pink and have a whole lot of fun.

Wendy 31:49

Absolutely.

Chantelle Ellem 31:50

Yes.

Wendy 31:50

Like I said before, what you can give, carer, and what they’re actually looking for, it’s to be listened to, and act on what they’ve asked you to do for them because a lot of people say, oh, yes, I can do that and then they’ll come back and say, I’m sorry, we can’t do.

Wendy 32:14

Yes.

Wendy 32:15

It’s out of our realm. So don’t offer stuff that you can’t–

Chantelle Ellem 32:18

Yes.

Wendy 32:20

Follow through on.

Chantelle Ellem 32:21

Yes, and when people offer I think just laying on it, like, accepted, like, don’t be too proud to say, Yes, I do need a meal cooked or I do need you to take me away for it and give me have a coffee with me and listen, like I think it’s really important to take up those offers and to be heard, because I feel like sometimes it feels like you’re yelling to the abuse, like trying to get help, and you’re advocating and just want to be heard. So I think it’s important to have those people that hear you.

Wendy 32:50

Because there’s a lot of roles that carer does. They’ve got to be the researcher for what’s out there. , they’ve got to be mum, first and foremost, to them, as well as the rest of the family. They’ve got to, be the advocates, they’ve got to be the mentors, they’ve got to be the teachers of the people that are coming in. To support them. They’ve got to be a journalist. Almost all, recording that needs to happen. That’s a lot of things.

Chantelle Ellem 33:16

Yes.

Wendy 33:18

Just a normal mum to do, let alone, the mother of a person that has impairments and stuff.

Chantelle Ellem 33:26

Yes, I think navigating that knowing all the different processes that you can have the treatments on for them, and then knowing which ones right and then pulling back and then putting more in it. , when you stopped after that four years, it’s like, OK, well, now’s the time just to break away from that for a little bit but that that is a really exhausting part of being a carer, I think to navigate that, that you think it’s just the physical stuff of caring for a person with a disability, but there’s, it’s so complex and so much so multi layered.

Wendy 33:54

And share until there’s, people out there that don’t have the capabilities or the opportunities that I had, during my life for Liam. So, they might feel, a little bit overwhelmed with what they’ve got to, take on board and stuff like that. So I think it’s important that those carers that have had opportunities, share their stuff.

Chantelle Ellem 34:25

Yes, thank you so much for sharing with us today. Coming in and sharing your story and being so vulnerable and open. I really, really appreciate it. It’s been such a good time speaking to you. Thank you.

Ben Feros Cares community’s quality Lead and community service operations. He is a mentor for many allied health professionals that work for Feros Care, and has extensive clinical knowledge on the topic of carers. Ben, can you tell us a little bit about what you do for ferrous care?

Ben Happ 35:00

Yes, sure. So, yes, I’ve been with Feros Care for nearly 10 years just coming up on that at the moment and through a few different roles starting as a physiotherapist, my current role, really in a nutshell, it’s about supporting continuous improvement in our community services. So we have to balance a few things in this. So it’s all about providing evidence based care, based on the assessed need of our clients, but then also weighing that up against what our client’s preferences and choices are, in terms of the care they want to receive, while trying to make sure that clients’ carers and our workforce stay as safe as possible.

Chantelle Ellem 35:39

And do you have any personal lived experience with either being a carer or knowing someone close to you that is a carer?

Ben Happ 35:46

Yes. So there’s probably a few different ways that I’ve seen the caring relationship. So for me personally, I guess it started when I didn’t even understand the caring role with my mum, caring for my late grandma, as I was growing up. So she lived in an aged care home near me in [unintelligible 00:36:05], and had been there for the last 10 years for life following a stroke. So I sort of got to witness that caring relationship with my mum, carrying my grandma, which was a beautiful thing and then I guess as, as time has come on, I’ve now seen that starting to play out with with my elderly parents, so they both approaching sure that’d be OK and they’re saying their 80s and I best describe them as being codependent carers in that, they sort of support each other and most recently, my dad’s had a knee replacement. So my mom had sort of stepped in and provide that additional caring role, but most of the time, I feel like they’re supporting each other.

So now that I’m, because I live nearby to them. So I can see that there’s a growing need, that will come a time where I’ll need to step into that carer role and , I’m just grateful for having worked in the area. I am because I know it is a confusing landscape to navigate. Sometimes it’s aged care and where the supports are. So hopefully, I’ll be able to put that to practice as , I try and keep them in their home for as long as possible and then outside of my family, I guess the main way that I experienced care relationships is through work. So as a physiotherapist and in my current role, I see it playing out in many different ways where it might be someone of spouse or a family member caring for one of our clients. Sometimes it can actually be that one of our Farrells care clients is the carer for someone else in the family, whether it’s the spouse or sometimes a grandchild, for example. So yes, it can take on many different forms.

Chantelle Ellem 37:47

We know that that role for being a carer can be high, quite demanding, and it can be quite stressful. How can you tell if someone’s coming, a carer is coming close to burnout or their stress levels are coming quite high?

Ben Happ 38:01

Yes, look, there’s a few I guess, tail tails. I mean, we’re all we’re all different and each each carrying relationship is going to be based on the individual people that make up that relationship but , some of the tail tails, I guess, that we could talk about would be just increasing conflict or frustration in the relationship. , things that were once handled without any concern suddenly are starting to create more tension is probably the first telltale sign that we’d be noticing and then , it’s really then about the self awareness of the carer, just being able to acknowledge and communicate when they might start feeling those feelings of being overwhelmed. Or, it might be that feeling of stress or anxiety or lingering sadness.

So these are all sorts of warning signs for any of us, in community and society but yes, in particular, to the caring relationship, things that we’d want to be making sure that we’re really open and honest about some of the other practical things I guess that care could be looking out for. So that sleep becoming disturbed is an often telltale, again, it can be either physical or mental load, or it could actually just be that sound, a person that caring for is needing to get up regularly during the night and as we all know, if you’re not getting your full sleep, it starts to play havoc on our ability to help others. Or even just things like if you’re starting to notice physical discomfort or pain, so , part of the caring role sometimes can, it can involve quite physically demanding role changes, and the carer is starting to feel like they’re starting to be the one that needs care, I guess is the way I describe it, then it’s a sign that something needs to change in that relationship.

Chantelle Ellem 39:47

Yes and what do you think that change could look like? What would you recommend for carers approaching burnout or feeling quite depressed or stressed? Are there any resources that you might frequently suggest to your carers?

Ben Happ 40:00

Oh, absolutely. Look, it is. There’s a wealth of knowledge out there almost overwhelming amount of knowledge. It’s just sort of knowing where to tap into it. I guess stepping back, I’d be encouraging carers to be trying to think in advance, don’t wait to start to feel that signs of burnout. , it’s about having those honest relationships right from the get go and setting up those support strategies but look, if you’re just starting to get into the caring role, the Australian government has a fantastic website called the carers gateway, which really is a central location where you can access a lot of different resources and information and look, they have a great request a call for feature that you can click the button, put in your contact details, and they’ll actually call you back. So you don’t have to be waiting on the phone line as well and on that website, there’s a lot of other resources. Obviously, if you are genuinely feeling that anxiety and depression and you need to speak to someone, we always have lifeline, which is available on one three double 114.

Chantelle Ellem 41:07

What kind of services does Feros Care are have to support carers?

Ben Happ 41:11

Yes, look, it’s part of the bread and butter of what we do in our community care. So it can be everything from supporting that daily care needs, to helping with showers and getting dressed and shaving all those types of personal care activities through to things like supporting what we call domestic here. So practical things like vacuuming and mopping floors or any out washing, for example. It can also be helping with preparing meals and we really try and engage our clients to be proactive with all of this so that if they have that that ability and function to still participate in their personal care or meal preparation, we try and include them as much as possible so that they can maintain those skills. There’s also a category of care, which sort of works around this term respite, which is really just providing a break for the carer in different forms.

42:06

So it can include things like social support, where our care worker would take the client out into the community and it may be to attend things like could just be as simple as going to a coffee shop, or going to the library or something else that they’ve enjoyed. It could also include what’s called a respite care where it’s actually facilities that exist out in the community and clients come from all over and they would actually have a day together doing all sorts of fun activities on site have lunch together, and then they would be picked up and returned home towards the end of the day and then we also have in home respite support where our care workers could stay with the client in their own home, and do a whole range of different supporting activities with them while the carer goes out. So it might just give them a chance to go and get to some medical appointments or do some shopping or just look after themselves while they can relax knowing that their loved ones being looked after. S

43:06

o outside of daily care, there’s also a few other areas just to think about. So support with things like clinical care. So nursing, for example, looking after any wound care or medication or continence support in the home. So you don’t necessarily need to be taking your loved one out to see their GP all the time and we also have a whole range of what we call allied health professionals. So it’s going to be people like social workers, occupational therapists, physiotherapist, exercise, physiologist, all that have a role in really helping to make sure that you’re getting all the support and care.

43:43

Really, as I said, it’s really about maximizing independence and functions so that the care relationship is as easy as possible. Within Ferris care, there’s a couple of other sort of really exciting areas that are developing at the moment, there’s an acronym, which I’d introduce your listeners to called Geats, or G 80, which is goods equipment and assistive technology, which they may be seeing pop up and really, this can be basic things like mobility aids, or grab rails or ramps in the home right through some of our smarter technology things, including, personal alarms, smart home devices, and even sensors so that if, if a carer and maybe it’s a son or daughter doesn’t live with the client, there’s a whole range of different technology senses where they can actually have that peace of mind to be able to sort of check in on their loved one from a distance.

44:38

So it’s really an exciting sort of opportunity and then the last one to sort of really just put a spotlight on for the moment is a service called the Virtual social sensor or BSC, as we call it, a barrel scare, which is an online platform where again, it can bring the outside into the home so there’s all sorts of different sessions there. So that might be relevant for our client or their carers and it can range from things like information sharing, like what we’re doing now, through to physical activity sessions, or even, fun things like quizzes and learning to play different instruments that really is a whole new world that can be opened up just from a smart device within the time.

Chantelle Ellem 45:20

We met someone called John who learned to play the ukulele through the VSC. So we I loved learning about what he’s learned through that program. So it’s a great idea.

Ben Happ 45:32

I used to actually deliver a lot of the activity sessions on the SC platform. So it’s something that I miss, currently, but I do like to drop in there and say, good day from time to time.

Chantelle Ellem 45:42

And how can you tell if your loved one needs more help than what you can provide?

Ben Happ 45:46

Yes, so yes, there’s again, a few things like we mentioned earlier. So , those, those signs are increasing frustration or tensions building is sort of the canary in the coal mine if you like, but then it can also be sort of more practical things to keep an eye on. So it might be that some the loved one is having more frequent illness or hospitalizations, that’s a sign that things are starting to deteriorate in that care relationship. It can also just be really practical, things like that care is noticing that they’re having to start to apply a lot of physical force to help assist with movements.

46:24

So moving around the bed, getting out of bed, transferring from a bed to a walking out, for example. So if you’re starting to notice that you’re actually needing to physically assist some of the weight of the client, it means that, we probably need to be doing some reassessment there.

Chantelle Ellem 46:41

They’re not alone so they can just reach out and they’ve got people to support them. Thank you so much for your time and for the work that you do. It’s been inspiring to hear your story about how you care for carers and the work that you’re doing for Feros Care. So thank you so much for joining us today.

Thanks for joining us for our second episode of Who cares for the carers. If Feros Care can ever support you in any way, get in touch on one 1300-418-418. Their aged care experts can advise how available services can provide you with additional support. Feros Care also have a carers guide full of resources on their website, and it’s free to download. Find it online by a feroscare.com.au/podcast. Chat to you next time on Unsaid, Untold. Please take care of yourselves in the meantime.

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.