Living two lives as a carer

7 October 2021

7 Oct 2021

Every carer in VMCH’s Carer Support Program is different, with a different story to tell. For Christina Johns, her story has changed many times, but what has remained the same is her steadfast commitment to her son Ashley’s wellbeing.

“Ashley has schizophrenia, anxiety and clinical depression, along with the dual diagnosis of substance misuse. He is 42 now, but he started exhibiting problems when he was 14. When he was brought out of hospital, I was told that that he needed full time residential care. But I don’t believe in diagnosis as a way of defining people, I believe that with right mindset, environment and support, people can change their medical condition for the better. Ashley has proved that over and over again by the advances he’s made, and it would’ve been a dreadful story if I had of believed what they told me.”

Christina and Ashley live in the Dandenong Ranges, which has been a beautiful part of the world for them to be at home during lockdown. Ashley lives in a self-contained unit on the property, and helps Christina out with her new business as a life coach. Together, they run a daily art class for kids in Melbourne’s lockdown, with Ashley leading the session.

For Christina, lockdown has been a positive experience, allowing them to have the time to relax together.

“Ashley loves not having to go out, he has social anxiety, so he tends not to want to socialise, so lockdown suits us well. Throughout COVID he has been able to resolve his drug and alcohol issues, which is amazing, that through the worst time in the world for people with mental illness, he has been able achieve a lot.”

While there are many positives in their lives, Christina says being a carer has many difficulties, from financial struggles to the inability to find time to meet with friends and debrief.

“My life has been dedicated to my son, and now I am moving into a different era of my life, but it has cost me. Carers have what we call ‘carer burnout’. We store all the anxiety when caring for someone, and we push it inside and hold in our bodies, and when we do that, it has to come out somehow. Either as an angry explosion directed at someone, or if you’re good at suppressing it, like I was, I ended up with cancer, hip and ankle replacements and many surgeries. I do think my caring role has contributed to my health.

“As carers, we literally pay with blood sweat and tears for what we do, and people who aren’t carers don’t understand that.”

Christina likens being a carer to living two lives.

“In the morning, you might get up, think about and decide what you have to do that day. But as a carer you have to do exactly the same thing, but for someone else. Every day you think ‘does our day match up, can we kill two birds with one stone?’. I don’t know how carers with more than one child do it, I don’t know how they cope.”

Christina has been utilising VMCH’s Carer Support Program for a number of years, and it was through this program that she met some lifelong friends.

“We get together when we can and talk and talk and talk. We all bring some food and wine, and sit and play cards. It’s just a connection, a way to debrief with other carers. We all have different sorts of challenges, but what unites us is that we care for someone and we know how taxing it is on our lives. We can just be who we are, there’s no pretence, and pretending that everything is fine, when everything is actually falling apart. Sometimes we just cry with each other because it’s hard. It is that camaraderie outside of that organised setting, where like-minded people can get together and have fun, it is just precious.”

For Christina, it is important that people understand that what they can’t see is what they don’t know.

“While Ashley may present with an ‘unseen illness’, it is very real what he, and I are going through, it is a real a thing. Nobody knows what he is going through. That’s why it is so precious to have people that you can talk to, who understand.”

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We here at VMCH respectfully acknowledge the traditional owners of the lands on which we gather, and we would like to take a moment to honour the fact that we live on the lands of the oldest civilisation in the world. We acknowledge the stories, traditions and wisdom of Aboriginal and Torres Straight Islander peoples, and pay our respects to their elders past, present and emerging.