It’s always late when he comes to bed. So late it’s not really late anymore and is more accurately called early. He’s cooked and washed up and tidied the house. Put on a load of washing after spending an hour watching whatever brain-numbingly stupid reality television show I’ve picked for the evening.
But that’s not why he’s late. For me, the worst part of the day is the end. As I’m getting ready for sleep, the thoughts and fears I’ve managed to push aside during the day come flooding back in the quiet of the night. So he sits with me and listens, waiting until I’ve ranted and cried and convinced him to give me a massage.
Then I fall asleep. And he’s left to process my thoughts and fears late into the night, on top of his own thoughts and fears, and there’s no-one there to pass them on to. So he watches TV and reads long articles on politics, the economy, science – anything to drown out the noise. Sometimes he spends hours on the internet searching for drugs overseas that might cure me/help me/give me a better chance. It’s always late when he comes to bed.
My carer is so much more than just that. He is cleaner and cook and grocery shopper and driver and counsellor and hand-holder and doctor’s appointment-accompanier and human punching bag. Husband. Best friend.
He is also forgotten. With the never-ending focus on me, there is very little focus on him. Nearly everything I go through, he goes through too. He just can’t have the needles for me or take on some of my physical pain. And nearly everything I have lost, so too has he. Our plans for the future: the travel, the family, the house. His career as much in ruins as mine. Any hope of a normal life gone for both of us on the day of my diagnosis.
We moved to Melbourne recently with hopes of better treatment options. While I have friends here, he knows no-one. Made all the more difficult because he’s a native of the United Kingdom. His family and oldest friends are 17,000 kilometres away.
There are more than 770,000 people in Australia who act as primary carers. Of these, about 300,000 are under the age of 26. At ages 29 and 30, we’re not young enough to fit in the official bracket, but not old enough to have any of the stability that comes with a few more years on the clock.
We get by on Centrelink, which covers the rent and other essentials. An old savings account and my insurance payout allow us to enjoy a few pleasures: a restaurant meal, a movie, a play. We despair at the knowledge that some people are relying solely on this government payment, making ends meet on an appalling amount. A few years ago, before our savings existed, that could have been us.
Sometimes I wish I’d never met him: one slightly different decision and he could have met someone else, someone normal, avoided all this pain. He says he wouldn’t have it any other way. I’m glad. I can’t imagine doing this without him.
So this National Carers Week, a time of acknowledging those who usually go unacknowledged, I want to say thank you to my carer – my love, my life, my everything.
National Carers Week runs until 17 October.