My name is Nick, I’m 21 years old, and I care for my wife who has ME/CFS (chronic fatigue syndrome), and her younger sibling who has ADHD and PTSD – they’re living with us in out-of-home care due to their mother’s various mental illnesses rendering her incapable of taking proper care of them. I’ve been looking after them both since I was 19. I love my family very very much and genuinely want to help them as much as I can. I do all kinds of care tasks – I do nearly all the housework, I cook everyone’s meals, I take our child to and from school most days, I pay all the bills, set up all the appointments with doctors and therapists, manage everyone’s medications, provide constant emotional and physical support, and have to find time to live my own life in there somewhere. Being a carer is undoubtedly the most difficult thing I have ever even attempted. I haven’t really had a full day off for over two years, much less a holiday or vacation. I started going to uni at the beginning of 2022 but had to drop out because my care responsibilities were too much for even part-time study. We have a great care team for our child comprised of workers from DFFH, therapists, paediatricians, and support coordinators, but the pandemic, our child’s age and special needs, and organisational bureaucracy have made it very very difficult to get engaged with supports and find the money to make ends meet. This means that every morning I make our child’s breakfast, and every night I put them to sleep. Every day I clean up after them, make sure they’re clean and warm, fed and not bored. My wife helps as much as she physically can, but she can barely get out of bed some days, and on most of the others she has only a few good hours before she needs to rest again.
It’s a strange experience being a carer for a young child at my own young age, and being responsible for so many aspects of their development. I don’t really socialise with other parents or carers as they’re usually at the very least 10 – 15 years older than me and I find we don’t have much in common. I have some friends that I try and see regularly, but I often have to postpone or cancel my plans because babysitters are unavailable or my wife isn’t feeling well enough to look after our child while I’m gone. I don’t get much time to really pursue my own interests and passions – what little time I get that isn’t spent caring, cleaning, or cooking is usually spent resting so I can get up the next day and keep at it. It helps that I’m quite physically fit and don’t have any health problems of my own, but doing any job for >60 hours a week for 2+ years without a break starts to wear you down pretty quick. My wife and I were going to go on a nice short holiday funded by DFFH, but they cancelled the funding at the last minute (because we weren’t taking our child with us) and we couldn’t go. We then had to move to a different part of the city shortly afterwards, as our child’s bio mother found out where we lived and started stalking us again. On the worst days, it feels like my whole being is consumed by the weight of my responsibilities, and I’m left wondering when things will ever get better. When my wife will feel healthier. When my kid will grow up and become more independent. When I’ll have time to really, truly rest, and to spend on my passions, interests, and career.
That said, being a carer has taught me some invaluable lessons about my own capabilities, and it’s filled me with love and purpose to give everything I can so that my family can thrive. I feel like before becoming a carer I was a lump of unpolished metal – full of potential, but lacking in refinement. It feels like the hammer and anvil of two years of caring has sharpened me into a thousand-fold blade. I’m a better problem solver, more empathic, a better communicator, more steadfast, a better husband, more perceptive, and a much better person, and I wouldn’t be any of those things had I not been faced with such insurmountable odds and such grave injustice. My wife and child are only 12 years apart in age, and they have never really had a stable home or reliable parents, something I used to take for granted when thinking about my own childhood. My parents taught me to be kind, selfless, to help those who need it, and to make the world a better place in any way that I could. I remember a pivotal moment when I was 17 where I grasped some of the abusive and neglectful situation my wife and child were in with their mother – in that moment, I resolved to do anything in my power to give them the life they deserved, and my resolve has never wavered from that time. This world is harsh, unfair, bigoted, albeit – as a privileged person blessed with the gifts of empathy and strength, my soul compels me to protect and provide for my family through anything and everything, for just as long as they need me, and then even longer after that. I want them to have every opportunity and every advantage. I want them to lead the happiest and fullest lives that they possibly can, and without me, that’s pretty much impossible.
I hope that my wife can get engaged with the supports she needs to look after her health, and that our child grows up to be an excellent human being from all our hard work, who carries on the spirit of compassion that drives me. I hope that we can stay together as a family and continue to lift each other up. I hope that more help is on the way, and that we’ll feel less alone very soon.