This article was written by Young Carer Ambassador, Jasmine, for Carers Week 2021.
Being a carer is all I’ve ever known.
I’ve been a Young Carer all my life, my mum lived with MS before I was born, and I’m 24 now, caring for my grandma with the support of my sister.
My sister and I affectionately refer to our grandma as ‘Oma’, and she’s been just that all our life…small, spirited and Dutch. We used to spend the occasional weekends at her home, eating peanut butter and cheese on fruit toast, now I scout her room every odd Sunday at her aged care facility for rotting bananas and smushed biscuits that have found their way into the deepest crevice of her handbag she carries everywhere.
You see, Oma grew up in the war as one of nine children. Scarcity is second nature to her. We spent a lot of our childhood watching Oma sneak leftover biscuits or cake at a cafe into her bag for later, a habit she’s carried into her aged care facility.
The problem with dementia though is ‘later’ never comes, and those biscuits soon become a pile of crumbs under the weight of other knick-knacks that find their way into her bag.
Families are never easy or simple
Oma was diagnosed with Alzheimer’s over three years ago now, it came slowly and progressed too fast. It feels like these past couple of years have been a whirlwind and I’ve just been along for the ride. My sister and I share the load paying her bills, filling out endless forms and giving Oma some face time. Sometimes I feel a little resentful. Oma and my dad had a terrible relationship which impacted our own connection and I was never sure if it was because my small Dutch grandma was also a little bit racist towards my Asian immigrant dad. That was always a tough one to navigate as her half-Asian, very tan granddaughter.
Once we were sitting in a cafe. We’d known she had been diagnosed with Alzheimer’s and were tiptoeing, trying to navigate all these changes that were happening so suddenly. Across the table, I met her narrowed eyes and asked, “What’s wrong Oma?”, she continued to look at me, observing my bare arms. “You’re looking very brown today,” she confidently questioned me. I sat there a little aghast, increasingly aware that dementia was destroying any semblance of a filter she had. I had no clue how I was supposed to respond.
Discussions about my skin colour usually led to a string of questions about my dad I didn’t feel equipped to navigate, especially knowing how agitated these conversations made Oma. After a bit of quick thinking, I settled on…“Well Oma, I’ve spent a lot of time out in the sun…” placing my arm next to hers and continuing, “just like you!” Thank god for the Australian sun and my avid gardener of a grandma.
Balance as a carer is tough to establish
My sister and I have been both my grandma’s guardians and administrators for over two years now since the State Administrative Tribunal determined Oma needed someone to make decisions on behalf of her. The requirements that come out of that role, being a carer and balancing regular life can be overwhelming at times. As a recovering perfectionist, in adulthood, I learnt that something has to give or I’m just as likely to end up in a burnt-out heap. I use a calendar to keep myself organised, I acknowledge when I need support and I take a day off work when I need to. I fumble often, and I google a lot but little things like Oma admiring how clean her teeth are after I take the time to brush them or how tidy her bag is now it’s sans crumbs makes it worth it.
Our day to day lives can only hold so much, whilst we might be able to take on that little bit extra for a short time, in the long run, something has to give. It’s like an obscenely loaded milkshake, precariously balanced and easy to become overwhelming, you’ve got to take some things off before you can start enjoying the shake and it gets easier when it’s shared with friends.
Young carers need more from the institutions we spend our time in
I’m passionate about advocating for Young Carers because being a teenager or young adult is hard, but going through that stage in your life with responsibilities that overwhelm even seasoned adults too is much harder. Without a supportive school or workplace, things can quickly feel out of control and reaching out is a harder task when you don’t know where to start or even what’s normal. It’s a common situation for young people like myself, and there is a lot of fear.
In the future, I want to see every school, public and private aware of who Young Carers are, common issues they may face and support staff who are equipped to refer Young Carers to local, state and federal services that can make a real difference, including working to mitigate the negative mental health effects a Young Carer may experience. There’s an intense amount of pressure on young people with caring responsibilities, someone needs to pick up the slack.