One step at a time

James is your average 20 year old guy. He loves camping, clubbing in the city, and backyard BBQs with his mates on the weekend, but he’s also been his “mum’s legs” since he was 12 years old.

“Mum’s got Multiple Sclerosis (MS), so my brother and I have pretty much been her legs since we were kids,” he says.

Diagnosed in 2001, when James was just one year old, his mother’s condition has worsened over time, and in 2006 things escalated to the point where she couldn’t walk without assistance.

The turning point came in 2012, when James’ dad moved out, and he and his younger brother Daniel took on the role of primary carers for their mum, at the ages of 11 and 12.

“We have a paid carer come in seven morning a week who helps her shower and get dressed, but Daniel and I are full time carers the remaining hours of the day,” he says. 

“This just means for the rest of the day we help out when she needs to go to the toilet, get her lunch and tea, and do whatever else she needs done around the house.”

James says his mum’s mobility has deteriorated slowly over time, but is now at a point where she is transitioning to a wheelchair – but not without a fight.

“It was a gradual thing, it went from mum not being able to walk comfortably on her own without assistance, to using a walking stick, then crutches, then a mobility walker,” he says.

“She’s now being trained by her physiotherapist to use a wheelchair, but she won’t give up on her walker just yet. She prefers to sit on it and push herself along rather than using her new wheelchair – it makes her feel a little bit better.”

James understands his mum’s need to hold on to her independence, which is why he helps her get around on her walker as much as he can.

“She’s just not quite ready to be fully in a wheelchair, so if we can help her with the walker, and it makes her a bit happier about the situation, why not,” he says.

“That’s a big part of it, mentally, just to know that you’re not completely giving in to the next stage – she’s still able to take a couple of steps, so we help move her legs and position her on and off the toilet when she stands up and sits down.”

Since leaving high school James has received a small carer payment from Centrelink for his caring role. Which has now been transferred to his younger brother Daniel.

“We’ve also had other paid carers come in to support us for a while now too – they help Mum with doing some meal prep, domestic work, and look after her Daniel and I want to go out. So mum’s been really happy with that extra support.” 

Sharing the role evenly with his brother Daniel, James says that having two of them in the house makes it easier to maintain a life outside of the home. 

“If I need to get away for something, Daniel is there to help and vice versa,” he said.

“One of us has to be home at all times, ideally both, but if I wanted to go away camping with my mates for a weekend, I know Daniel could cover for me.”

Being so close in age, Daniel and James share a lot of mates, which also makes it easier for them to keep up their social lives.

“If we can’t get a support worker at night one of us will stay home to put mum to bed while the other goes out, or we’ll just bring the party here,” he says. 

“Mum’s pretty chilled with it all, she lets us have our mates over whenever, so we can have a social life while still being around for her. 

“It’s easier that way, I can be hosting a barby, then just shoot off for a couple of minutes to help mum to bed.”

James says it helps to have mates who are understanding of what it means to be a carer.

“Because I’ve been mum’s primary carer since I was 12, all my mates know about it, and have grown up around it, so they’re really cool.

“When they come over, they’ll stop to chat to mum for 10 minutes before coming out the back to hang out with me and Daniel. It’s awesome.”

James’ mates have also been there to help out in the tougher times.

“Mum fell over one time so I called one of my mates, a big Bulgarian guy who works in aged care, and he came straight over to help me get mum off the floor,” he said.

“We had to use a tarp to lift her up safely, then he told me that we needed to get a proper lifter for her.

“Mum spoke to someone at the MS Society the next day and within a week we had a new lifter.

“She’ll still get a bit upset if she falls over, but now I’m like, “there’s no worries mum, I’ll just grab the lifter and you’re up,” it only takes a few minutes.”

In addition to having a support carer come to the house three days a week, James says they have had a lot of help from the MS Society.

“The MS Society has been great for mum, they organise her occupational therapists, who come out to arrange new equipment, and have also helped us with getting some modifications done to the bathroom, and around the house,” he said.

“We’re in the process of getting a ramp put out the back so mum can get out there again too – she hasn’t been in the backyard for five years at least, so that will give her a real boost when it’s completed.” 

As young boys, James and Daniel also received essential respite from the Carers Support Young Adult Carers program, Raw Energy.

“That honestly was one of the biggest helps for me, as a young carer just finding my place in the world,” he said.

“Whether it was just a movie night, or a trip to Kangaroo Island for three days, it was a lovely supportive environment.

“A lot of the time we wouldn’t even speak about our jobs at home – because we all knew why we were there – mostly it was just about getting out of the house, enjoying ourselves and having a bit of fun. 

“It was good to know that there were others like you, especially from a young age, it was just wonderful to know you weren’t alone.”

While Raw Energy sadly no longer exists, James says he still catches up with some of his mates from the program. 

“Some of the guys I’ve known for close to a decade now,” he said.

“Honestly, I don’t think I would be so comfortable in my role as a carer had I not received that support early on. 

“Just growing up knowing that it’s not just me and my brother, has been essential.”

James’ glass-half-full attitude toward life, and his caring role, is a testament to the success of young carer support programs… as well as his strong relationship with his mum.

“Mentally I don’t feel bad or have bad days really, you’ve just got to take it as it is, and embrace it.

“Being a carer is not always fun, but I’ve got a good situation – I’m living in the Hills, with a view of the city and a balcony with a great backyard for entertaining, I can’t complain.

“There’s always going to be someone out there worse off or going through some kind of struggle – being a carer is nothing to be ashamed of, we’re just doing a job that needs to be done.”

If you’re an unpaid carer and looking for support contact us today to find out more about Carers Gateway Services at Carers SA.