Seven years ago, my father was diagnosed with Early-onset Alzheimer’s and everything in my life changed. I was 22 years old and at first had no idea what this meant for myself or my family. For the first few years his decline was not overly impactful, and I went about my life as usual, aware my father was unwell, but not completely understanding the implications this would have, for his life or for mine. I never envisioned that I would one day become my dad’s carer, but a few years later I fell into the role, and it has been one of the most rewarding and challenging experiences of my life.
My dad’s diagnosis made me re-evaluate a lot of things in my life. There is no clear answer as to why Dad ended up with Alzheimer’s, however, stress and lifestyle choices are likely contributors. I’d always been very similar to my dad in how I approached work and life with a “work hard, play hard” mentality, and I was following his path. Working a very demanding corporate job, completing a law degree, and participating in a very active social life. Days blended into weeks, months into years, and I had a feeling that if I continued down this path I would miss out on living, and perhaps end up in the same position as my dad.
I decided to quit my job and pursue my passion, teaching Yoga. I had this dream of moving to Northern NSW and cultivating a very relaxed and holistic life. During the transition period I moved back in with my parents’ and this was when I realised just how much Mum had on her plate as a solo carer. It also occurred to me that in moving away, I’d be missing precious moments with my dad that I would never get back. So, I changed my plans and moved into my parent’s home indefinitely to support my mum and care for my dad.
It was a very challenging transition. I was thrown in the deep end, instantly switching roles with my dad and witnessing his mental decay first-hand. But with the support of my mum and Dad’s positive attitude, I was able to tread water. The main difficulty with Alzheimer’s is that it’s a hidden disease. It gets progressively worse and every day presents a new transition or regression to discover and adapt to.
During the course of caring for Dad I became involved with Dementia Australia and was lucky enough to become a very active Advocate for them. I also became involved with my dad’s support company and I was soon working for them as a support worker, expanding my caring role and caring for other people with disability in a professional capacity. Very quickly, my life was consumed with elements of care from all angles.
Which led me to my current role as Carer in Residence for the Carer Knowledge Exchange (CKE), which, in itself, has been an eye-opening experience. In my advisory role I have been exposed to many gaps in support for carers, which provided the inspiration for this blog: an opportunity to express my discoveries and share my lived experience with carers and researchers alike. This blog is written from my lens and is motivated by my day-to-day caring role, as well as the work we are currently doing at the CKE.
This is not where I expected my life to be today, but I couldn’t be more grateful for where I have ended up. My dad is my inspiration. The joy and purpose that caring for him has given me is unlike any other experience I have had in my life. I hope this blog can support constructive change in the carer space, as well as inspire other carers amidst their struggles.
There is absolutely nothing more contradictory in experience than being a carer, every day is a mountain to climb, but once you reach the top and see the view, every single incline or hurdle was worth it.
If you or someone you are with is in immediate danger, please call 000. If you feel upset or are in distress, you can contact Lifeline, 24 hours a day, 7 days a week by phoning 13 11 14 or texting 0477 13 11 14.