Marion’s 20 year carer journey

20 May 2024

Marion Kaye has been a carer for 20 years. During this time, many things have changed, including funding streams, support services, and now a pandemic. Even she has changed.

When Marion’s son, David was eight years old, he was diagnosed with an Acquired Brain Injury (ABI), through a ‘medical negligence’ experience. For Marion, this meant that the son she had known was gone, and she had to adjust as her new role of carer, as well as mum.

She says during the last 20 years, it would be fair to say that it hasn’t been all ‘rosy and joyous’. It has been hard work.

“The situation we have been through, it has been an unusual one, because it happened at a time when ABI was not acknowledged, and there was no support around.

“Villa Maria (as VMCH were known at the time) was the only one who would accept a carer for someone with ABI. They were my life saver.”

Over the past 20 years Marion has been involved with the Carer Support program, coordinated through VMCH. Through this, she has had the opportunity to meet other carers, and have some time out to pursue activities and events to give her a break.

While David’s intellect has not been impacted, he requires a wheelchair most of the time, and has difficulty with fine motor skills and speech. David has managed his own care through the NDIS since he was 18, but he needs assistance from carers for everyday tasks.

“I’m not trying to play it down, we’re doing very well, but it’s been a long hard road,” says Marion.

“Carers have a lot more support now, thank goodness. In the beginning, I was lucky I was proactive, and found help, but it’s a lot more accessible now.”

In more recent years Marion’s caring role took a turn, as she also became carer for her parents. They relocated from their retirement village 17 years earlier to come and help Marion and her family. Now, they are nearly 92 years old, and they have their own health issues, including Alzheimer’s Disease.

“In the last 5 years, our roles have reversed. Luckily, we have been able to access some emergency Level 3 funding through their Home Care Package, for some additional support. VMCH have been a great help with getting what we needed for mum and dad.”

Despite the supports in place, Marion came to realise that the responsibility she was shouldering was taking a toll. Dealing with depression, post-traumatic stress disorder and anxiety, Marion now speaks with a psychologist once a month to keep her mental health in check.

“I had to realise that as a carer I was burnt out and I needed help, and support. My carer role has not been easy. I have really had to come to terms with the fact that I need to look after my own wellbeing. I have to be selfish and be really aware of me.”

Through Marion’s time with the Carer Support program, she became an art therapist, supporting carers for nine years. This also provided an opportunity to look at herself in a different way.

“It’s made me grow, within myself, in lots of ways. So this had the benefit for helping others and myself at the same time.

“It’s quite isolating as a carer, but I have made some good friends through this carer role. We catch up when we can (except at the moment, due to the pandemic), and usually we do an art and craft day once a month. We’ve known each other for a long time, so it’s been a long friendship that’s been built up.”

“[Being a carer] was all thrown at me, there’s been grief, mental health issues, and it is ongoing because I have my son every day.

“You just don’t know what’s around the corner. We don’t plan any more, we just do it. Caring has given me a lot, but it’s also been a long hard road, and that’s for all the people out there.

“This happened out of the blue and changed our life totally. We make the most of every day and if we want to do something, we do it.

“Just make the most of what you’ve got now. Don’t leave your plans for tomorrow. If you want to do something, just do it.”

Click here to find out more about our Carer Support program or call 1300 971 720.

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