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This Carers Week (12-18 October 2025), we’re reminded that care comes in many forms.
One of our Southern NSW Local Health District staff members has shared their powerful and personal story about balancing work, family and caring for loved ones. It's a moving reflection on strength, compassion and love, titled "We are all carers".
My first experience as a family carer was when my father infarcted at age 52. He needed a triple bypass and developed postop complications that changed our lives. I come from a large family of six children and as the only nurse it was natural for me to step in and care for my parents. At the time, I was working reduced hours at 0.7 Full-Time Equivalent (FTE) after the birth of our son. Life was tricky as my father developed complications with a left parietal bleed. This resulted in an organic delusional psychosis which led to a psychiatric admission. I attended tribunal hearings over the course of a year whilst my mother minded our son. It wasn’t easy however you just put one foot in front of the other and keep going.
We were referred to paediatricians for our son since birth, however the diagnosis of autism was reached at age 9. This was the point where we reached for help as life was challenging. We joined the autism association, met other parents with children on the spectrum and learnt how to help our son.
The best thing about our son is he gives us another perspective. We see the world with new eyes.
He has his challenges and keeps us on our toes even now as an adult, however when he laughs it’s with pure abandonment and I love that about him. He’s also honest and will never tell a lie even if it’s hurtful. He has no filters. He’s intelligent but not so good with hygiene, time schedules and organisation. Time moves at his pace. He has to learn about the semantics and pragmatics (use and application) of language through social stories in cartoon speech bubbles. Speech therapy is so much more than one thinks. I worry about what will happen to him when we pass on from this life. Who will guide him, keep him centred and on track?
My husband experienced mobility issues at 44. He thought it was his knee from a previous torn meniscus, exacerbated by weight gain so he worked hard to reduce his weight over one year.
He waited another year to ensure he maintained the weight loss before finally visiting the GP. His GP sent him for a nerve conduction study thinking he had motor neurone disease, however didn’t share this theory. He was diagnosed with Parkinson’s disease at 46.
Looking back there were red flags in his 20‘s. We just missed the signs until the symptoms became more obvious.
We both have a strong work ethic and worked back-to-back so one of us was always home with our children. We moved to the NSW Far South Coast and changed roles with my husband taking on the role of carer for our son. Life was an easier pace here.
It’s starting to get harder balancing life and work. My husband has deep brain stimulation as a last option for treatment of his Parkinson’s. They say we have maximised treatment. We know it’s not a cure, it’s about improving quality of life.
People ask what it’s like to be a carer. I don’t think of myself like that. I’m a wife, mother, daughter.
He can still have independence and remains active during ‘on times’. His days are interrupted by on and off times. This means he cannot walk, has overwhelming nausea, muscle weakness and needs to lie down to stretch.
During on periods he rushes round trying to fit in routine chores in the house and garden before he runs out of time. These on off periods last one and a half to two hour periods all day.
Imagine the frustration of a day that’s interrupted by what you can do. One is vulnerable during off times. By the evening his muscles ache from the effort of stopping and starting. This doesn’t hold him back. The tough keep going. I reduced my hours to be more available and spend as much time together as possible while we can. We stay home most of the time because it’s easier. We do try to go out however, Mr Parky cuts in and we have to abandon plans and return home due to poor mobility and nausea.
My husband has to watch his food intake, as too much protein affects his disease and interrupts his activity. We watch the clock for meals, medications and those dreaded of times.
Lately we find ourselves stuck somewhere when the medication stops during unplanned times and we have to figure out how to make it to the car. I’m thinking it’s about time we sourced a wheelchair.
He also has bad days where nothing works but overall, he’s positive and we choose humour to carry on. We love our life and live in a beautiful part of the world and can’t complain. There is always someone worse off than ourselves, so we are grateful for what we have.
For more information about National Carers Week, visit www.carersweek.com.au.