The one thing young carers want you to know

Jessica Bean opens up about the incredible selflessness displayed by her lover turned carer, and how hurtful it was when he was told to ‘get a real job.’

On the toughest days, my carer could have been mistaken for a cook, cleaner, doctor, nurse, pharmacist, physiotherapist, and counsellor all wrapped up into one super human. He often worked the early, late, and night shifts consecutively - especially when the care I needed wasn’t available in the hospital system due to resource shortages.

My carer was often expected to carry out highly technical tasks with extreme precision: mixing up medications down to the milligram, using delicate medical paraphernalia, and performing procedures generally reserved for those with years of medical training.

It was a lot for a 22 year old to take on, but these were not the most challenging things about being a carer.

From the ages of 22 to 28, my partner became my full-time carer. Like around 300,000 other young Australians, he selflessly gave up the freedom of his 20s to ensure my needs were met.

At a time when his peers were traveling, studying, and building careers, he was doing work which most did not see, and very few understood.

Jessica and husband on bike
(Above, Jessica and her husband Cameron)

Even our closest friends and family didn’t understand the role he played every day: why it took so much time; why there weren’t services for those things; and - the stinger - why he couldn’t just ‘get a real job’ as well as caring for me.

Very few people appreciated just how demanding it was to keep a chronically ill human alive, and this was his most difficult challenge.

As a young carer, my partner spent his days tirelessly working to keep me alive, yet regularly found himself fighting the stigma that his role was easy and less demanding than a nine-to-five. He was confronted by the expectation that, as a young man, he should have been doing ‘more valuable things’.

The seven per cent of young Australians aged 15 to 25 who are carers have to deal with this stigma every day. Just because others don’t see the tough stuff, doesn’t mean it isn’t there.

For the job of a carer, there is no ideal candidate or job description. Disability and disease do not discriminate; they do not strike the family that is best able to meet their loved one’s needs. In many cases, the young people who become carers enable family units to stay together and prevent loved ones from being fitted into services that don’t best accommodate their needs.

In a society that criticises the selfishness of young people, these carers are rarely recognised for doing the most selfless work of all. There is one thing friends and family (or anyone else who passed judgement on our daily activities) could have done to make my partner’s role as a carer a little easier. They could have recognised the value of his work, and realised that being a young carer is not a lifestyle choice.

For the many young carers in Australia who together spend 36 million hours each week supporting their loved one, a little understanding goes a long way.

My partner didn’t choose to be a carer because it was the easy option or more desirable than other forms of work. He couldn’t clock off as he walked out the office doors, the compensation barely paid the bills, and he had no sick leave or holidays.

However, in my partner becoming my carer, he gifted me a level of health not otherwise possible. He minimised my need for costly and invasive treatment, often provided an alternative to long-term hospitalisation, and undertook the duties of multiple professionals. Ultimately, his choice to do so is why I am here today.

To both of us, my carer was far from ‘jobless’. He did the most important job of all.
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