Published 31 October 2022
Kim Tyson cares for his wife who has paraplegia. Levina Pham cares for her brother who has autism. Kim and Levina are both members of Carers NSW – an organisation which provides information, education and training, resources and referrals to support carers.
There are around 854,300 carers in NSW who provide care and support to a family member or friend who has a disability, mental illness, drug or alcohol dependency, chronic condition, terminal illness or who is frail due to age. For many, caring is a 24 hour-a-day job with emotional, physical and financial impacts that can also affect participation in employment, education and community activities.
We spoke with Kim and Levina to learn about their life and their role as a carer.
Kim: I'm 36 years old and care for my T9 paraplegic wife Bethany. Beth was in a car accident when she was 15, so she has been in a wheelchair for more than half her life. We met at church as teenagers. We were really good friends and then one day we realised we were more than that. We've been married for 16 years now and have two kids: Anastasia who is 10 and Alfie who is seven. We live in Lennox Head, in the Northern Rivers region of NSW. We love it up here.
Levina: I am 23 years young and was born in Indonesia. I care for my younger brother Kerry who has just turned 18. Kerry is non-verbal. He has Level 3 autism spectrum disorder as well as a severe intellectual disability. I help my mum care for Kerry and in some ways, I’ve helped raise him. There’s just the four of us: my mum, my brother John, Kerry and myself. I do a lot of administrative tasks, as my English is a lot better than my mum’s. I take Kerry to doctor’s appointments and for outings. We live in Chipping Norton, in Sydney’s south west, and Kerry insists on going to the best cafes. He is a coffee snob!
What is a typical day like for you? How are your days different to those of your friends and family members?
Kim: Bethany is largely independent in terms of personal care, so my typical day, particularly a weekday, looks similar to other peoples. I work four days a week as a disability advocate for people with spinal cord injuries. I love my work; it’s meaningful and drives me. But when it comes to activities and the ‘mental load’, that’s where my life looks very different to my friends. I work four days a week as I need a day to get out with Beth; to go shopping or just run errands. For weekend activities, there is a lot of pressure on me as a carer. Going to the beach for example, I really have to prepare. Do we have all the equipment? Will there be an accessible parking spot and toilets? Will I be able to carry Beth down to the water? If we go for a walk, will there be stairs along the way? Forecasting for variables can be stressful. My son Alfie was invited to a party recently, and an invitation was extended to parents. But when I dropped Alfie off, I had to ring Beth and say there is the steepest hill and a massive set of stairs; it won’t be possible for you to come. Travelling can also be difficult and airports are the worst. At check-in, Beth has to transfer to an aisle chair which has to be pushed by someone. I now demand help from staff as I can’t wrangle two kids, carry all our luggage and push Beth. It would be so much easier if people in wheelchairs could transfer at the gate.
Levina: When I was at university, my friends would just be dealing with uni work and maybe a part-time job. I had that plus my caring responsibilities. Now that I'm in full time work, my mum looks after Kerry day-to-day, and I do the administration work and budgeting. There are always lots of forms to be filled in, NDIS receipts to submit and invoices to approve. I determine if we have enough funding for certain activities and book appointments with therapists. I also carry a significant mental load. I run through checklists in my mind – do I have Kerry’s medication? Will there be accessible parking and toilets? Will we be able to sit away from the café door (as Kerry is much bigger than me and sometimes runs away)? Finding accessible toilets can be stressful and it annoys me when they are being used by people who don’t need them.
Kim: COVID-19 was really challenging for us, but we resolved as a family to make the most of it. We actually got out more than ever – we went to the beach or to the park with our dog. I’m working mostly from home now and I’ve remained intentional with getting out. I try to get out at least once a day even if it is just to walk the dog. I listen to podcasts and have time-out which really energises me.
Levina: COVID-19 was really hard on my family. Before COVID, my brother had a consistent routine: he would go to school Monday to Friday; on Saturday he’d have his day program; and on Sunday, my mum and I would take him out. When COVID hit, we couldn’t do any of that. Kerry also has asthma, so my mum was really worried about what would happen if he got COVID. Getting him vaccinated was also really difficult; he is scared of needles, and it took six people to hold him down. This time last year, Sydney was in lockdown and that was the worst because we couldn't go anywhere, aside from the park. Kerry really acted out because he was so sick and tired of being stuck inside. We have picture cards, and he was always pointing to Coles or Woolies as he loves shopping. If we couldn’t go, he would throw stuff around the house because he was just so frustrated. My mum and I suffered quite a bit of anxiety during COVID. We were worried about Kerry’s NDIS funding. With the lockdowns, we couldn’t take Kerry to any of his day programs, and we were worried that they might think we don’t need that funding for future years.
Kim: I work in the community sector, so people are quite understanding about my role as a carer, but when I worked in banking that wasn’t the case. If I had to take Beth to an appointment, there was this whole ‘you’re letting the team down’ vibe. At times I’ve experienced indirect discrimination and a lack of understanding but Beth has experienced far worse. I remember one time when she took our daughter to gymnastics and the disabled parking spot was taken. Beth had to park next door and when she came back, she had been parked in. Luckily the van had a logo on it, so Beth called the business to explain. The bloke came back and gave her a mouthful. He said ‘you can’t park here; these are my premises’, and he was swearing at Beth in front of our daughter. When they got home, Beth was devastated. I called the guy up and said, ‘mate, you’ve got to understand… she's in a wheelchair, she was with our young daughter. She doesn't get out much because things like this can happen, and what you’ve done – how you’ve behaved – has set her back considerably.’
Levina: When I was at school and going through uni, there were some days I couldn’t go because I had to take my mum and brother to specialist appointments – which could take hours. I would explain why I wouldn’t be there but sometimes my teachers or tutors would say ‘we will have to mark you down’. I think they thought I was being lazy and just wanted to have a day off. In recent years there has been more acceptance but in high school and my early uni days, that wasn’t always the case. My mum is sometimes treated unfairly because she speaks English as a second language. She’s been overcharged at times – or has been provided fewer services than agreed on. We pay for carers to take my brother out and some of them, because he is non-verbal, think they can get away with just having Kerry at a centre and not doing any of the activities. They think we won’t know because he can’t speak. But Kerry is like any other kid who comes home from school; you can tell if they’ve had a good day or bad day just by the look on their face.
Kim: My advice is: find what works for you. Your context is your context. You also need to do things that ‘fill up your tank’ and make caring sustainable in the long term. Beth is great; she encourages me to hang out with my mates – we’ve been brewing (and drinking!) beer together, and I also play footy on a Monday night. Don’t be afraid to laugh and smile – having an optimistic, glass-half-full attitude can be really helpful. And lastly, tap into the resources which are out there. I enjoyed doing the Carers NSW Carer Representation Program; it was great to meet other carers. Carers Gateway provides counselling and other practical support.
Levina: Caring can be hard. When you are having a tough day, remember today will pass and tomorrow will be a better day. Having a positive mindset helps as does having patience for the person you are caring for. If it’s frustrating for you – it’s probably also frustrating for them. Give grace to everyone around you, especially the person you are caring for. I would also recommend the Carers Gateway and I highly recommend the Young Carer Program at Carers NSW. It helped me to connect with other young people who are going through something similar. We’ve also gotten to do some great things – they took us to Jamberoo Action Park which was fantastic!
Kim: Carers Week is important as it reminds you that you are not alone. So many people care for loved ones, and you often get words of wisdom from people going through something similar. I was working so wasn’t able to get to any Carers Week activities this year, but in the past, I’ve gone to conference sessions and morning teas.
Levina: I attended a few events, and they were great! I think Carers Week is important as it acknowledges the work of carers and the extra emotional and physical load we carry. It’s nice to know that our efforts are recognised and appreciated. Carers Week falls close to Kerry’s birthday, so it’s a double celebration. Kerry and I love to bake together – or rather I do the baking and he does the eating!
01 Nov 2022
We acknowledge Aboriginal people as the First Nations Peoples of NSW and pay our respects to Elders past, present and future. We acknowledge the ongoing connection Aboriginal people have to this land and recognise Aboriginal people as the original custodians of this land.