Poet, editor and aged care advocate Sarah Holland-Batt on winning the Stella prize and value of caring

by The M-POWERed Collective
Tuesday 9 May 2023

Sarah Holland-Batt cared for her father for 15 years before she had the words to write a book about his decline and eventually, what she describes as the gift of death back in 2020. This book, entitled The Jaguar, would go on to be the winner of the 2023 Stella Prize. “I had to do all of that living to then do the writing,” she says. When her father was diagnosed with Parkinson’s Disease, she was 18 years old. Her father was told he would no longer be able to drive, so in a beautiful act of rebellion, he bought a bottle green vintage Jaguar car on eBay. The first his wife knew of it was when it appeared in their driveaway. This Jaguar would go on to be the name of Sarah’s book, and the figure of a jaguar would be something she went back to time and again as she cared for her father. It was only in the last three years of his life that she started penning poems about how the disease had taken control of her father’s life. “It took me all of that time to think my way through it all,” she reflects. Sarah was awarded the 2023 Stella Prize – a prestigious Australian annual literary award established 10 years ago for writing by Australian women in all genres, now worth $60,000 – and in her acceptance speech, she spoke openly about witnessing the death of her father: “Sitting beside my father’s hospital bed, the world was never more ordinary, never more small. Yet at the same time, I was aware I was witnessing the most mysterious transformation of a human life. My book is an attempt to find a language for that final horizon of our imagining and to think about the act of dying which we so often resist yet is the most universal of experiences. The last thing we will all ever do.”

Sarah observed that death – and decline – was something people feared. Spending your last days in aged care was something they refused to believe would ever happen to them. It was something that happened to other people. “We are frightened of aging, we’re frightened of aged care, we’re frightened of cognitive decline,” says Sarah. “People have all of these quiet, deep fantasies that they’ll be exempt from that system.” It’s a system which urgently needs reform and her experience of caring for her father has led to Sarah advocating for change in the aged care sector to address issues such as pay conditions, chronic understaffing and abuse.

Her own father was abused in aged care – at one point, she discovered he had six fall-induced broken ribs which had gone untreated – and even with witnesses and a first-hand account of the abuse that had taken place, it took the facility two months to remove the staff member who abused her father. Because the sector isn’t regulated, the person found employment at another facility, where no doubt the abusive behaviour continued. “The standard should be no matter what your means are, no matter how much money you’ve got or how little you’ve got, from me to the Prime Minister, you should be able to look at an aged care home and say with some confidence, ‘I’m comfortable living here,’” she says. “We’ve still got a really long way to go before we have a world-class aged care system, and that is what older people deserve. We need to invest in this. It’s not an optional add-on. It’s a necessary thing for the human rights of older people that they have dignified and safe care.” 

The role of caring, and the value – or rather the undervalue – is something Sarah is very vocal about. She knows from lived experience not only how important caring is, but how much of yourself you need to give as a carer. There are career setbacks. There are personal sacrifices. There’s putting your life on hold. There’s loneliness. When we ask the question ‘why aren’t more women working?’, often the answer simply is: they are. They’re in caring roles. Yet no one is caring for the caregivers. They’re left to navigate lost ambitions and reshape their lives around their loved ones who need care. “The older I get, the more conversations I have with women who are drowning between personal and professional responsibilities. They don’t want to drop the ball at work, they don’t want to indicate that they’re struggling to cope, so they’re just doing double duty,” she says. “There’s this complacency at present that feminism has achieved its goals, but actually, where we’re at is that women are being asked to do double, because they haven’t given up those care giving responsibilities, but are now having incredibly intense careers.”


Read the full interview with Sarah below and to purchase The Jaguar, go to www.uqp.com.au
 

Do you remember your first piece of poetry?
I was probably eight and our school had shown us some bush ballads of some sort. I can’t remember who it was by, but I remember writing a rollicking little rhyming poem and proudly reading it to mum, who was very polite about it and told me it was brilliant. I’m almost sure it wasn’t, but I did enjoy that because I was studying piano and grew up in a musical household. My dad played piano as well, so I was always interested in the music of things. I liked rhyme. It was a poem about a landscape that I’d never visited, like a dusty pub because that’s all we’d read. It was this completely imagined landscape because I grew up on the Gold Coast surrounded by none of those things.

Looking back, do you think you always saw the world through words?
I think I did. I was lucky in that both my parents read to me so much as a kid. My dad loved books, and mum too, she loved reading. The earliest stories that mum and dad have of me are of me pretending to have a nap but actually reading to myself in my bedroom. I always just loved books, and books were the way that I connected with family members. When my grandmother would come and stay, I’d wake her up at 4:50 in the morning with my favourite book. She was such a good woman, she’d get up and read it to me, but she’d be half asleep, bleary-eyed. I grew up surrounded by books and I really loved the escape of reading.

Self-doubt is a part of the creative process – it’s normal to question our work. You’ve won countless awards and scholarships and residencies. Do you still feel self-doubt, given how much you’ve achieved?
I think you have to. The second that you become totally self-satisfied as any kind of artist, you start producing mediocre stuff. You start producing the same old stuff. You can see this sometimes with some visual artists, some musicians, some writers. They feel like they’ve hit on a formula, they know the formula works, and you could spend a career just replicating that formula. That doesn’t tend to work so much with poetry. I think you always have to be driven by something else and something new. I’ve finished The Jaguar, I’ve got that book out, and I’m in the process now of taking stock of the things I might like to change in my work, which is pretty common. It’s nice to have a little feeling of satisfaction, but I try not to indulge in that too often. I think it’s good when you know that a poem has finished and it has worked. It’s lovely when you get feedback, but to sit around congratulating yourself is not going to help you do anything new or interesting. It’s just actually probably unhelpful, I think. But it’s a tough balance because you don’t want to be too self-doubting because that can preclude you from doing new work. If you feel nothing but doubt, that’s not helpful either, so I think it’s a combo of having enough of an artistic ego that you feel that the work you’re doing might find readers or might have resonance, but not having too much that you are so pleased with yourself that you don’t try and that you don’t risk failing as well. I think that’s important too.

The most pleasurable part of writing for me isn’t all of the stuff that comes afterwards. It’s the bit where I’m at my desk working with language, being in the thick of it for me is the reward. Everything else that comes afterwards is always lovely when it happens, but I’ve been around long enough to see really brilliant work not be recognised. I know from literary history that great writers who we now read and venerate were not great in their time, so it’s lovely to have that recognition, and obviously when it’s your peers, people that you respect who find that resonance, that’s really beautiful too. You’ve got to find the joy in the work itself because if you’ve got too much invested in the external reception, it also can hamper the work that you do or the kind of risks that you’ll take.

I imagine there are no words to describe the loss of your father and his decline, but you found the words to put into a whole book. Tell me about the process of finding those words…
Dad had Parkinson’s for a really long time. He was diagnosed when I was 18 and he was pretty good for 10 years. He was at home for 15 years, which is unusual. He had a very slow decline, in part because he was really intellectually active, and so there was a lot of time for the family, for me and my mother to come to terms with it before he was experiencing really acute symptoms. But even so, it was a devastating diagnosis for him. It was devastating for mum and I, and my mother’s mother had just passed away from Parkinson’s a year before my dad was diagnosed, so first her mother, then her husband, and it was a pretty wretched kind of pressure cooker.

At that time, I just hadn’t read any literary work that was contending with something like cognitive decline. I’d read some poems about death and dying. Obviously, it’s a great subject in poetry but I thought I’d never write a poem about it. I barely told anyone as well, and I think that’s often the case, particularly for young people. I didn’t have any peers whose parents were going through similar things, and I didn’t know how to say, “I’m really sad about this. My dad has had this diagnosis. I’m frightened. I don’t know how long he’ll live. I don’t know what life’s going to look like.” I think that capacity to speak about it came much later, and so in a way, I had quite a long time to witness and watch the changes in my dad. 

In the last five years of his life, he had a pretty precipitous decline and a lot of really bad experiences in residential aged care and had a lot of I suppose physical and cognitive changes that became more dramatic and were happening faster, it was like whiplash watching it. It was probably only in the last three years of his life that I started writing poems about his Parkinson’s, and I think it took me all that time to think my way through it all.

Because also, there’s so much familiar language about death and dying, that it’s terrible, that it’s something to be feared, that decline is the end of your life. That once you go into aged care, you’re better off dead. All these things that people say every day, all the time, this kind of shop born language. I wanted to bring something different to the way that these things were represented as well, not to suggest that it is all rosy, and I think it was important to me that the poems were honest. 

We are frightened of aging, we’re frightened of aged care, we’re frightened of cognitive decline. No one wants to get a neurodegenerative disease, and so I’d been thinking about how we kind of insist to ourselves, I think a lot of us in the kingdom of the well insist that that will never happen to us. We insist that aged care is something for those people over there. Poor things, that’s terrible but I’m not ever going to be one of them. The number of friends who’d said to me, even when I mentioned that my dad was in aged care, they would say either, “Well, I’m going to kill myself before I go into aged care. That won’t ever happen to me. I’m going to pay for someone to look at after me in my home. They’d have to kill me to get me in there.”

People have all of these quiet, deep fantasies that they’ll be exempt from that system, and so I was thinking about what drove that fantastical thinking. I think it is a sense of the human beings as being slightly superior and separate to the animal world in which death and decline happen all the time, that somehow, we’re different. And so that was the thinking that led me into the poems, but it took me a long time. I think I had to do all of that living to then do the writing.

You write that your father held the gift of death in his lap. Tell me about why you describe it as the “gift of death”…
It may sound callous but for many people, there comes a time when they recognise that their loved ones or they themselves don’t have quality of life anymore, and that was very much the case for my dad. In aged care, he’d lost the capacity to walk. He had difficulty swallowing because Parkinson’s made the muscles in his throat not function very well. He had difficulty seeing. All of the things, he couldn’t feed himself, he couldn’t shower and toilet himself, all of that stuff that then makes it pretty difficult to feel good every day, compounded with the gaps in care that he’d experienced and the stress of that. There were many times where I could tell my dad was ready to go.

I wrote that poem before my dad died, and yet only fully understood what I’d said in the poem after he died in that I had this sense that with the sadness, there would be a feeling of relief that my dad's suffering and experiences had come to an end. And that was the case, but there was also joy at dad’s life and who he’d been. It’s funny, when you watch someone decline like that, you have a sense sometimes that the real person is disappearing, the dad you knew, and that was the case with dad. He’d become very different. He’d say things that you knew that in his right mind, he wouldn’t mean. All of that stuff, it’s very, very tough, and people who’ve got loved ones with Alzheimer’s and disease like that are very familiar with this phenomenon where you still love the person, but they can become difficult to like in the moment at times.

The book is called the Jaguar, because when your father was diagnosed with Parkinson’s disease, he was told he was no longer fit to drive. In an act of rebellion, he went and bought a Jaguar… 
He bought it on eBay, sight unseen. He was the only bidder in the auction because it’s a totally insane thing to do to buy a car on eBay, and the first that any of us knew about this was when the car was delivered to the house. At the time, it was an absolute nightmare because of course, he wasn’t going to surrender his driver’s license when he’d just been delivered this beautiful vintage bottled green Jaguar. He insisted on driving it and gave mum and I absolute conniptions for about six months, but it was also kind of a beautiful act of rebellion, in that he could still use a computer, he still used a credit card, knew how to bid on eBay.

I went through a few titles for this book, but the book also has unpredictable appearances of Jaguars – the cats – as well. I was at a writer’s residency in the United States, and I met a woman who had a jaguar as a pet. I became quite obsessed with jaguars and did a lot of reading about them. They’re the only cat that can crunch through the skull, so the power of the compression of their jaw is such that they can bite through the bone. 

It became in my head an avatar or figure for a range of things in the book – the idea of the mind collapsing, but also the idea of hunting for the right words, hunting for language, and the idea of predation and that we think of certain things as risks, but then there can be these silent things like Parkinson’s or degenerative illnesses that can be just as fatal. I created this figure that for many things and is woven throughout the book.

You spoke about caring so beautifully at the awards night about caring. When you were writing that speech, what were the biggest messages that you wanted to get across?
The older I get, the more conversations I have with women who are drowning between personal and professional responsibilities. They don’t want to drop the ball at work, they don’t want to indicate that they’re struggling to cope, so they’re just doing double duty. It’s not only women but it is overwhelmingly women undertaking this caring. The caring as we know is generally informal. It’s family caring so it’s unpaid. It’s not something that they can substitute for work. It’s important work, it’s work about human dignity, but it’s work that is still there invisibly. I’ve got colleagues who are having to contemplate moving loved ones into aged care. I’ve got colleagues dealing with children, caring for disabled relatives, partners and so forth. I’ve had the experience for many years of having this enormous thing going on in my life while also still having to turn up to work. There’s not really much acknowledgement of that work, and even if you take carer’s leave, essentially, if you don’t keep up with where you should be, you may not get promoted, you may not get the opportunities that you want, you’re going to fall behind. There’s this complacency at present that feminism has achieved its goals, but actually, where we’re at at present is that women are being asked to do double because women haven’t given up those caring giving responsibilities but are now having incredibly intense careers.

You presented a shocking submission to the Royal Commission. You talk about the abuse that your dad was subjected to and the lack of care. Tell me about your submission…
We moved dad into residential aged care as an absolute last resort, as most people do. It was at the point where he was actually a danger to my mum. He was having falls. She was living alone with him and for her to even try and help him up was becoming a real worry. On top of that, he had really significant medical needs by that stage. We were incredibly diligent. We visited so many homes, and really thought that we had done due diligence and chosen a very good place. When dad moved in, initially, the problems were ‘relatively’ small. They weren’t insignificant. He was not being given his medication on time, which was significant because with Parkinson’s, it needs to be delivered on the dot or you have big lapses in your motor coordination and you can have falls, so that was serious. 

We were noticing small injuries that weren’t being picked up on or treated, small infections that no one was noticing, because the staff were completely overworked. There weren’t enough staff, and the staff weren’t trained. Mostly, they were personal care workers. There’s no minimum qualification for a personal care worker in Australia. You don’t even need a TAFE certificate. You can do it straight off the street with no training at all, and you’re looking after people who have really complicated medical needs and if they were in the hospital system, would be receiving care from people with multiple degrees. 

We were concerned about that and we raised those issues. Mum was visiting pretty much every day. I was visiting as often as I possibly could – I was in Brisbane and dad was on the Gold Coast. We were getting nowhere essentially. We’d get these reassurances and then it would continue, and then the problems became progressively worse. It was so sad in that dad was then at a stage where it was really difficult to move him because he’d become so frail. He got so disoriented and upset, even when he was taken to the hospital or taken out of his environment, and that’s often the case, and we were just triaging things as they were coming up.

In the end, we discovered that he had six broken ribs, three of which were partially healed by the time they were even seen on an x-ray. I had a broken rib last year. It’s the most excruciating thing I’ve experienced in my life. When you cough, you just feel like you’re being stabbed. They’d been from falls that had happened. Dad had fallen, no one had noticed, or they just helped him up and hadn’t had him looked at. This is extremely common in aged care that people have fractures or broken bones and they may not be diagnosed because there’s just no one there to pick them up or dad might have gotten himself up.

Then we had a whistle-blower come to mum and I say that she had witnessed a carer in the evening shift deliberately belittling and abusing dad and treating him really poorly. She was saying to him things like, “Your nappies are out in the hall. Go and get them yourself.” Shutting the door on him when she knew he needed a shower or needed to go to the toilet, and telling the other staff that he was sleeping and leaving him in bed uncomfortable – monstrous stuff. This was someone who just should not have been in the aged care sector. Unfortunately, most of the people who work in aged care are phenomenal and do so much hard work with so little resources. I feel it’s important to say that. I’ve done a lot of work with the Nurses and Midwives Federation. There are some incredibly dedicated, overworked women in aged care, but this unfortunately was someone who was not one of those people and was totally unsuited to the work and was a danger to dad and others. 

I presumed naively that there’d be a very quick solution to this in that I’d take it to the facility manager and this person would be sacked, and that was not the case. The facility manager was only interested in knowing who the whistle-blower had been, had no interest in there being consequences for the abusive carer. If I couldn’t get the right outcome, there’s something really wrong with the system because I then went to the police, I went to the ombudsman, the aged care regulator, I went to elder abuse, I sought legal advice, all of this stuff, and still, it was incredibly difficult to get a satisfactory outcome.

We found out years later that the person had just been moved to another facility. I managed to get her away from my father, but she continued on in the system, and that then got the hair running for me in terms of becoming involved in aged care reform, because I thought, “How bad is the regulation of the system that there's no mechanism to exclude someone?”

One of the recommendations the Royal Commission that I ended up making, was that personal care workers should be subjected to a registration scheme. Nurses are regulated, doctors are regulated through APRA. But personal care workers, there’s no way to regulate them. There’s no way for the government to know where they’ve worked. There’s no work history. There’s no way to exclude them from the workforce, even if they’ve done something terrible at another home. There’s no record that follows them, which was absolutely astonishing to me because they’re the majority of the workforce.

1.3% of aged care homes have optimal staffing levels which is unbelievably low… 
I’d like to see an aged care levy in our tax. I’m happy to pay it. It’s a small thing that would create a huge contribution annually to lifting the standard. We’ve got an aging population. This problem is only going to get worse because as each year progresses, more and more people are going into aged care, yet we’re having a lot of difficulty recruiting the workforce that we need. The federal government is in a really tough position at the moment in that it has inherited this mess. It has to bring forward recommendations that include 24-hour residential nurses on site. There aren’t the staff because there has been very little done to recruit workers coming into the pipeline. To affect change on the scale that we are talking about, what we’d be comfortable moving into ourselves or moving our loved ones into, it will require significant investment and there needs to be a public education campaign to bring the public on board. Unfortunately, aged care drops down the priority list. For decades now, there’ve been so many inquiries, so many reports, and still, stagnation on all the important things like recruiting more workers and lifting the standard of care. We need to invest in this. It’s not an optional add-on. It’s a necessary thing for the human rights of older people that they have dignified and safe care.

What does winning the Stella Prize mean to you? 
It was so exciting and unexpected, and it means the world to me. Stella recognises that books don’t exist in isolation. They do so much to support and promote the works on the long list and the short list and create a community of people who are passionate about books. It has come to stand for more than just a book prize because it also creates an amazing platform for the winner to do things across a year. 

It’s a beautiful honour. It’s an incredibly generous award and I’m very grateful for that. It has been a totally surreal month and it still hasn’t entirely sunk in, but just such an honour and such a total joy.