Episode 46: Carer Stories of Change

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EPISODE 46: Carer Stories of Change

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00:00:00:00

Carers Qld voiceover

Choice and Control is a podcast celebrating meaningful inclusion of people with disability in our communities, brought to you by Carers Queensland, your NDIS Local area coordination partner in the community. Each episode provides a conversation space for people with disability, their families and carers, to share their stories with you. We also hear from members of the wider community, local businesses and community leaders who share information, ideas and possibilities to give you more opportunity and more choice and control in life.

National Carers Week is about recognizing and celebrating the outstanding contribution Australia's 2.65 million carers make to our nation.

00:00:52

Carers QLD CEO Debra Cottrell

Carers do an amazing job of providing additional support to people that they love, and that's really why they do what they do. But it's definite that if carers weren't there to support those people that they love, who may be frail, aged, they may have a disability, they may have a chronic illness, they may have mental health illness, if their family members and their friends weren't there to support them, then all of that care would need to be paid by our governments. We've had a long history of working within our community to support both carers and the people that carers support. So it's really valuable for us to honour both people in the relationships, because relationships and families don't stand alone and everybody needs some support at some stage.

00:01:36

Tracy (interviewer)

And that was Carers Queensland's CEO Deborah Cottrell speaking with us last year. In this episode, we chat to two carers who share their journey and the positive role the NDIS has played in their family's life.

Well, for the past 20 years, Richard from Brisbane has been the full time carer of his brother Lex, who lives with an intellectual impairment. As editor of Q News, Richard is a strong advocate for the role of the NDIS and the vital support his brother Lex now receives. We started by asking Richard about his family and how he came to be his brother's full time carer.

00:02:15

Richard (interviewee)

I come from quite a large family. We've got five brothers, three sisters, we're a Dutch Jewish heritage. Lex is the eldest in our family. He's living with a disability. He's very gregarious and quite a friendly chap. So looking after him, I was the one nominated to look after him. I actually had a choice a few years ago to actually relinquish Lex to Disability Queensland, but his living conditions back then, 20 odd years ago would have been not good for him. He would have ended up in a group home or something like that. So living with me has given him a better quality of life.

Every second year I have one of my brothers in New Zealand look after him, so it gives me a bit of respite. Lex doesn't like going to anywhere else except for family, so to try and motivate him to do some respite elsewhere, he gets extremely angry and upset. So I get a break basically every two years prior to the NDIS, I basically did it all myself. So I think when I initially took over, I actually went through a period of mourning because being an out gay man with basically no responsibilities, all of a sudden, having Lex to look after really impacted my life. And I had to really make some major adjustments after Mum passed away because from having no responsibilities to looking after Lex really changed my life quite dramatically. So at first I didn't cope with that very well, but once I got used to it and I actually love living with Lex, he's a really nice person and I've learned to adjust my life and grow, I suppose, as well.

00:04:40

Tracy

So now Lex has NDIS support. How has that changed things for your family?

00:04:46

Richard

Hugely. Absolutely hugely. So it's given me back a part of my life also. I have always been a small business owner in one way or another. I took over an LGBT publication called Q News in 2017, which I'm required to be quite social and go out and go to events and there's a huge amount of work involved in that. With the help, with the help that the NDIS has given me is I've been able to actually launch the magazine in into interstate because I no longer have to be here on the weekends to have to support my brother. I actually have the paid carers to actually help me during the week when I'm not available, and also weekends. So it's really given back part of my life. Even though I still spend a fair few hours looking after my brother, it's given me a lot more freedom.

If it wasn't for the NDIS, I wouldn't have expanded my own business, which is the magazine and the queer voice in Queensland.  We've actually changed my goals to being far more ambitious. Now we've launched into New South Wales and we will be launching into Victoria next year as well. I wouldn't have ever done that if I didn't have the time to be able to go Interstate 50% of the time of my working time.

00:06:36

Carers Queensland Announcement

As one of the largest NDIA local area coordination partners in the community, Carers Queensland continues to work every day to build a more diverse and inclusive culture where everyone feels they belong and are valued for who they are. We're proud to be one of the few organisations in Queensland to hold the Rainbow Tick accreditation, leading the way on inclusive and affirming work practices. Carers Queensland has a dedicated email address for LGBTIQA+ people to connect and be supported by one of our friendly Rainbow responders. Want more information? Connecting with us is easy and safe. Just email rainbow@carersqueensland.com au for safe contact with one of our many LGBTQIA Plus team members.

00:07:31

Tracy

Richard, a lot of carers out there are struggling and they may not have the support of the NDIS. What advice would you have to carers who may be struggling?

00:07:42

Richard

Advice? I would actually connect with somebody who can help write a plan and goals for the person they're caring for, to reach out to the NDIS, to get them on a particular plan to improve both their life and the person they're caring for. And my friends, they see some of the struggles that we go through, my brother and I, and actually really understand how difficult and how amazing it is, you know, being very appreciative. The extra help that I get from the carers. Now that we're able to actually engage.

00:08:33

Tracy

Knowing that Lex Is In professional, safe hands, how does that make you feel when you're at work and you're pursuing your own goals?00:08:41

Richard

Look, we've gone through a process with different companies to pick the ones that both Lex and I were extremely happy with. And yeah, look, the companies that we're engaging now are fantastic and amazing and it makes me feel good about being able to do other stuff and knowing that my brother's okay while I'm not looking after him.

00:09:08

Tracy

Have you also noticed, have you learned new things about Lex himself now that he's not reliant on you as much? He's forming new friendships, new relationships. How has that been?

00:09:21

Richard

Yes, with regards to Lex, I've probably realized that he's a lot more capable and he's been learning new skills, like as in cooking and whatnot, but he doesn't like people knowing that he's got new skills because it means that he has to do more. I caught him the other day, he was actually making himself some bacon and eggs on toast and I came home and he quickly washed all the pans and put them away because he didn't want me to know that he could do that because otherwise he believes that he'll be expected to do that for everybody (smiles).

I believe that there's been a vast improvement of mental and emotional well being as well, from both Lex and I. He's been able to actually go out within the community and do things that he ordinarily wouldn't be able to do with me. And also my mental health in relation to being able to actually formulate other relationships elsewhere and being able to do stuff has been great for both Lex and I. So we're a lot more calmer together now, whereas we're not sort of sort of bound strictly together anymore. It's given me more freedom and to be able to actually stay away overnight.  It's made me a happier person, I guess, because it basically made Lex his own person with the support of other people and not relinquished. But I've got lesser of a responsibility role in relation to that so I'm able to actually be emotionally elsewhere as well.

00:11:25

Tracy

Richard, thank you so much for chatting to me today. It's been great to hear about yourself and your family and Lex. All the best.

00:11:34

Richard

Thank you very much and it's been a pleasure. I’m a huge advocate for this. Thanks very much.

00:11:43

Carers Queensland Announcement

LAC Connect. It's a new way to stay in touch with your local area coordinator, Carers Queensland, with everything you need right here on your device. It's a handy app to keep track of your Lac appointments, browse workshops and events, check out information and support, and get the latest news stories and podcasts. It's available on Android and iOS, so whatever device you have, you can stay in touch. Head to our website to sign up@carersqld.com au and look for LAC Connect.

00:12:17

Tracy

Well, after moving to Queensland from Venezuela several years ago, mother of two Nathaly encountered a new set of challenges as she began her new life in Australia. As the full-time carer of her daughter Laura, who lives with intellectual impairment, Nathaly was faced with the momentous task of finding new Australian schools and establishing new professional therapies and supports for Laura while trying to learn English as a second language. We started by asking Nathaly about her role as carer for her daughter, Laura.

00:12:51

Nathaly

My role as a carer involves everything. It's like I can see my role as a full time job because my role as a carer involves physical and intellectual skills to be present, to be accurate with every decision that you make and every step. Laura is my oldest kid. I have a younger one. She's now 24 years old. So I have been taking care for Laura for her whole life.

She still live with me, with our family. Our life with Laura has been quite challenging, quite hard, but we are still here, we are still with her, we still support her. So we are still taking care of Laura and I think it will be like forever. We will always support Laura in what she needs. Before NDIS or before Australia… because we are immigrant, English is our second language.  When we came to Australia, my first challenge was English for me and for Laura, it was the first thing, the big one.

00:14:32

Tracy

Where's your home country?

00:14:33

Nathaly

Venezuela. We come from South America. We speak Spanish. For Laura and for myself, living Australia was quite challenged. So we start from the beginning again, just learning how to speak English and then find the right way for Laura again. It was for me like a start over again.

00:14:57

Tracy

And how old was Laura?

00:15:01

Nathaly

She was 13 years old. For the first month here in Australia. It was so stressful for us. So, wow. We didn't know about Laura's future here. So we started again slowly. Find a school, listen to people advise us and start paying for occupational therapy again, psychology again, make all the assessments again in English and start from the beginning.

00:15:39

Tracy

That must have been really difficult.

00:15:41

Nathaly

It was.

00:15:43

Tracy

How did you manage?

00:15:46

Nathaly

Well, with my husband's support, that is a great thing. My husband always supports me. Finally, we find NDIS.  So we are with the NDIS since 2019.

00:16:03

Tracy

And how has that influenced your life, changed your life?

00:16:09

Nathaly

Oh, my God. I could say that NDIS changed my life. I went from being a carer full time for Laura to having a life.

00:16:24

Tracy

So after the NDIS, you had more time for yourself?

00:16:29

Nathaly

Absolutely, yes. After NDIS came to my family, I started doing things for myself, like studies and then applying for jobs and time to do some kind of exercise or hobby or just relax and have a coffee without any concerns about what Laura is doing or is not doing. I start thinking about other things that make my happy, make my life more fulfilled. More like real life…  like get a job, get involved in a community, go to the gym, go and get a certificate. I already have two certificates.

And then slowly NDIS get more support to Laura so she got more hours and more funding to do more things. Okay. I say, well, it's time to get a job. Because maybe with a part time job I can be more independent, support my family, feel more useful. And now I can say Laura have all support that she needs, all professionals working with her. I have a full-time job, I bought my own car, I help my husband with all the financial things and I support my family overseas. So NDIS means for me, a big change. So NDIS changed my life completely.

00:18:45

Tracy

How has that made you feel?

00:18:47

Nathaly

It's kind of peaceful, it's kind of being more relaxed in sense that Laura is in good hands. Laura has whatever she needs. I can set my own goals, I can do what I want or what I need to do. Simple. I can plan my day because I know Laura is in good hands. Especially because through NDIS I met such good people, such a good professional people. I speak English, I speak Spanish, and people that is so professional. And that's the main thing. If you meet people that is professional, can speak your own language, that is amazing.

00:19:55

Tracy

So have you been able to find Spanish speaking support workers?

00:20:02

Nathaly

Yes, I have one that is very helpful for me. But we have a team that is amazing, so professional, so involved with Laura. We have a chat group, we talk every day, we check Laura's goals every day. We change things that doesn't work for Laura. My team. Laura’s team is so amazing.

00:20:36

Carers Queensland announcement

Carers Queensland is growing inclusion, awareness and opportunities for people with disability. And we're better to grow things than a garden. We're working with community gardens to improve accessibility and make sure people of all abilities can get their hands dirty. We're starting conversations about what the community wants and needs and how we can work together to give everyone a place to put down roots and bloom. Find out more, get in touch or look for events and opportunities coming up near you, visit our website   www.carersqld.com.au or call our inquiries line on 1300 999636.

00:21:19

Tracy (voice-over)

As a full-time carer, Nathaly found it difficult to spend quality time with her husband and other child. Yet with the confidence of knowing that Laura was in good hands, she was able to take a short holiday for the first time.

00:21:33

Nathaly

Everybody is doing things that everybody likes, everybody is working towards goals. For example, my husband is focused on his work, my kid is going to uni. Now I work and I do yoga. Sometimes we have time for dinner or we have time for…  actually I remember one weekend I went for holiday with my husband and my kid because Laura was with her carers, her support workers. So it was the first time that I took holiday with my husband and my kid without Laura. And I could say that it was amazing. It was time for my kids, time for my husband.  It was for me the biggest things that I did because my relationship with my family always was limited, always was depending of Laura. So this weekend was so grateful, so good for me.

After this weekend we learned that Laura is good by herself. I learned Laura can do by herself. Laura can be safe, Laura can have a life without me. So from that moment I start changing my mind.  I could say I grew up, I started thinking different, I start seeing Laura in a different way. (As an adult?)  Exactly.  So it was hard because I always have been working towards Laura. But I feel good, I feel it's the right thing. I have my life, I have time for my family and I know Laura is okay, she's safe, she will be fine.

00:24:04

Tracy

And she's working towards her independence…

00:24:07

Nathaly

Yes.

00:24:08

Tracy

Just like you are as well.

00:24:10

Nathaly

So NDIS has been good for Laura and for myself, NDIS has been good for the whole family. So I could say NDIS work is not just getting you funding to do things.  NDIS is an organization that help you to keep going, to achieve your goal, to make your life more easier, more happy, more joyful, more how life in family should be.

I mentioned before that I like yoga. So now I'm member of a community… that this community do yoga as well. So I met new people there. So that is one of my goals, meet new people and be more healthy. So work towards my health, mental health and physical health. That is another goal for me. Another goal for me is get more skills. So I could say in my forties, I start working to get more skills to work towards my mental health, work towards my physical and mental well-being. That's what I'm trying to say.

00:25:58

Tracy

And how are you going with that?

00:26:01

Nathaly

(laughs and smiles)  I feel good, I feel good. I feel I wake up every day and I know what to do, I know what I want, I know better myself. Before NDIS, all that I knew was I have to take care of Laura.  But now I can say that every day I know me better. I know me as a person, as a mom, as a wife, as a friend, a member of a team.  It's simple. I know everybody can have a life like that. But for me, that means lot. Because I could say I start having a new life in my forties.

00:27:00

Tracy

So you have discovered new things about yourself?

00:27:06

Nathaly

Of course. I didn't know what I like. I didn't know what I want. I didn't know just little about me. And now I could say… I didn't do yoga before. I just enjoy yoga, is an example. I enjoy having a coffee with one friend.  I enjoy going to my work. I enjoy everything in my life now. Simple things. But I enjoy, I feel grateful for every day in my life. I can live every day. Everybody is okay. Just go and do what you need. Do what you want. Because everybody in the family is okay.  Including Laura. Laura was my major worry for a long time. It's still my worry.  But now I could say it's okay. Just wake up and say it's okay.

00:28:20

Tracy

Nathaly, it's just been so wonderful talking to you today. Thank you so much for meeting me.

00:28:27

Nathaly

No, that's okay. I try hard not to cry, but that's okay.

00:28:31

Tracy

Thank you.

00:28:36

Carers Queensland Announcement

Thanks for joining us at Choice and Control, a Carers Queensland podcast. If you've enjoyed this podcast episode, please take a moment to leave a rating and review and share it with your community.

For more information about our School to Adult Life Transition program, the National Disability Insurance Scheme, or Carers Queensland, contact us online @  www.carersqueensland.com or call us on 1300 999636 or head to Facebook and look for Carers Queensland. NDIS.