The Carer Journey – A Mother’s Story
The journey of being a carer is unique to each individual. When you’re new to the role of caring, it can feel overwhelming and intimidating. However, finding comfort and guidance in the experiences of others can provide reassurance and let you know that you’re not alone in this journey.
In the blog post, My Carer Journey – Raising My Son In Mozambique And Sydney, the author Arahni Sont, shares her personal journey as a carer for her son.
As a mother, Arahni raised her son in both Mozambique and Sydney. Throughout her journey, she actively pursued various alternative therapies to support her son, who has been diagnosed with a mild to moderate intellectual disability, is on the autism spectrum, and has been living with a mental health condition since early adulthood.
Originally written in 2019 for National Carers Week, the blog post delves into Arahni’s reflections as a carer and the strength she needed to overcome them. In addition to this, Arahni provides insights from an interview conducted while she served as an advisor during the development of the DSS Carer Gateway Project.
The text below contains selected excerpts from an interview conducted by a journalist with the author. Finding North has obtained permission from the interviewee to share the content.
The below interview was first published by Centro ASSIST.
Journalist – “How did you start to be a carer?”
Arahni – “Before I became a carer I had an international career in finance, travelling and living in many countries. In 1990, my son was born in Sydney, and soon after we moved to Mozambique.
I guess I became a carer when my son was born, but for me the role only really started when he was about 1, and I started to notice things weren’t quite right. He wasn’t talking and had repetitive behaviours. We took him for lots of tests, both in Australia and South Africa.
When he was about 2 years and 9 months, he was diagnosed with global developmental delay. Much later – when he was 10 – he was also diagnosed as being on the autism spectrum.
When he was diagnosed with developmental delay, we were told he would never speak and that we should use sign language – which we did not do.”
Journalist -What is the hardest thing about being a carer?
Arahni – Doing it on my own has been one of the hardest things about being a carer.
I returned to Sydney when my son was 10, because he needed better schools and treatment than we could get in Mozambique – which was then the second-poorest country in the world. My son’s dad stayed in Africa, and I never re-partnered.
I do have good friends and some family to help, but it is not the same as having a partner.
It can be hard to find the resilience, courage and energy to keep going. And the feeling that you have to keep going, because there isn’t anyone else, can be harder still.
I try to stay positive, and I think in general I’m a positive person. But in some ways, I think many carers are always grieving. We’re grieving for what might have been, for the ‘if only’. At the moment I’m grieving because my son does not have a girlfriend and may not ever marry. I’ll never be a grandmother. It takes constant vigilance to not compare myself or my son with other people.
Journalist -What is the best thing about being a carer?
Arahni –Having someone in my life with mental health problems completely changed my path, and making a difference has been one of the best things about being a carer.
When my son started to have mental health challenges I was thrown into dealing with the mental health system.
I quickly became an advocate for change.
I had been a Carers NSW representative since 2005 and attended many policy and stakeholder meetings. In 2010 I became a member of the MHA’s National Register of Mental Health Consumers and Carers. Then in 2014 I was asked to be on the NDIA Mental Health Sector Reference Group.
Being a spokesperson and being able to influence policy has given me a sense of purpose. My work included being an advisor to Mable, the first care platform in Australia and I am currently an advisor to Centro ASSIST that helps service providers transform under the NDIS.
I feel this path has been a good use of my skills and education, and I really like that I’ve had a positive impact. It has made my caring role into something that is not just for my son, but for many other people.
Journalist -What have you found that helps you?
Arahni –Having a break has always been essential –having a massage, going out with friends, enjoying music and sport, just taking my mind off my responsibilities.
I have a carers group that has been together for more than 10 years. We meet in my home, and they are a great source of support. When my son was younger, I asked friends and family for help. Now we can ask for paid support from the NDIS, which is a good thing and I think will help many more people.
Journalist – What would you like to tell other carers?
Arahni –Look after yourself. Caring is stressful and you need to look after your health. I probably didn’t do enough healthy eating or meditation so I’ve had a few health problems.
Have other interests – find a hobby or a sport you like. If you can keep working it’s a great way to have a break, interact with colleagues, and gain a sense of achievement. Find a workplace that’s flexible and will support you – I think that’s a lot easier these days. And
it’s important to find your tribe
There are many advocacy groups for different conditions and it’s good to be with people with similar challenges. You can find out about resources –schools, therapies, events – and keep up to date with what’s out there. We’re lucky that in Australia there is so much support available.
For the complete blog article, including the chapter titled “A Journey of Discovery” by Arahni Sont in the book “Opening the Doors – The Hidden Life of Carers,” please visit centroASSIST.