Until recently, I was your typical, middle-aged Aussie who spent very little time thinking about the quality of nursing home care. I'm a member of the generation that thinks of ourselves as the centre of the public universe. We are the workforce. We are the parents of kids in school. We are peak-hour public transport users. We are the ones who pay full price. So, we don't think about nursing homes much, until it's something a loved one needs.
It happened to me back in 2013. My dad, who had been diagnosed with prostate cancer some six years earlier, was not coping well with chemotherapy. He'd managed to maintain his independence through six years of treatments and a bout of skin cancer. But now he needed chemo.
I scheduled a flight back to Australia timed to celebrate the end of the last dose, but Mum called to say he wasn't doing so good. 'He can't walk up the stairs, Rachel.' He needed 24-hour care, and Mum — who worked full-time and was half his size — just wasn't able to be his nurse, no matter how much she wished she could.
So he went into hospital and we started to think about nursing homes. I had visions of him in a nice room he could call his own, where he could receive visitors and play bingo in the afternoons. In hindsight, I can't believe I didn't realise how close he was to the end — he could barely lift himself up into a sitting position in bed. But when you are losing a parent your brain doesn't work rationally.
Because my dad was eligible for fully subsidised care, we were given a list of potential nursing homes that took people like him. While we worked to find him a permanent place, he was put in a temporary one, unfortunately far away from us. The decision-makers gave no thought to my mum's battling public transport and the traffic, but it seemed like a nice place. We thought Dad was just being difficult when he begged us to take him home.
After having no joy convincing my mum, he rang and begged me. Startled, I explained he was just too sick. He angrily hung up on me, very out of character for my normally jovial dad. When we visited, we'd find him lying there with his beanie pulled low, covering his eyes, shutting out the world. Later, he quietly told us that while some of the staff were good, one fella was very rough, yanking and yelling at him. I still shudder to think.
We needed to find a permanent place, so I began to do the tours. I remember someone telling me to ignore the chandeliers and smell the couch cushions. One place had a million things you couldn't do for 'health and safety' reasons. No, we wouldn't be able to bring in his favourite Indonesian food. No, his pet dog wasn't allowed to visit. It seemed more like a prison than a home, so that was scratched off the list.
"It didn't take much to provide dad with good care. What he needed — and got — was good food; kind and gentle interactions with appropriately-trained staff; and a can-do attitude from the higher-ups."
Another place seemed very posh. I was given an appointment and tour. But then the next week I dropped in without announcing myself, and found a mattress in the hallway and a woman, who seemed to be in some distress, calling out without being answered. The third place gave me a generous tour of their lovely facilities but when I explained dad was fully subsidised I was told that he wouldn't be allowed in the home I'd just toured, they had a different home for government-funded care. I didn't ask about that one.
Finally, I went and looked at the local council-run home. It was like we had stumbled on the promised land. Nothing was too difficult, no request too odd. When I explained about dad's need for Indonesian food, the manager told me they even had Indonesian nursing staff who would probably be able to cook him something authentic themselves! This was the home for us.
Fate must have been smiling on us, because a place opened up almost straight away. Dad transformed from an angry, difficult patient, into a happy and contented soul who knew he was about to make the greatest journey of all. He kept telling us how good it was in the new place, how kind the staff were. We started to realise that what we'd dismissed as 'Dad being difficult' was more likely due to a darker cause.
Dad died two weeks later, never even eating a bite of nasi goreng. His cancer had progressed too far. The night before he died, the nurses asked if I'd like to stay over, and arranged for a camp-bed for me to sleep in next to his bed. They were angels, the staff at that home.
It didn't take much to provide dad with good care. What he needed — and got — was (at least the offer of) good food; kind and gentle interactions with appropriately-trained staff; and a can-do attitude from the higher-ups. It's the type of care I wish for all residents of nursing homes all over Australia. Unfortunately, it seems this is very far from the case for many.
Dr Rachel Woodlock is an expat Australian academic and writer living in Ireland.