Reportage

Hearing stories of the past

The repositories of history and the future

WHEN WE FIRST see Daphne, she is sitting in a pool of sunshine at the edge of her veranda. Bougainvilleas punctuate small patches of open ground between each cluster of rooms, and an unused swimming pool contains slowly disintegrating giant palm fronds, making the place look like an old tropical motel. The sound of a jet taking off from nearby Darwin airport thunders against the tin roof as the plane spirals off over the Arafura Sea.

This may be a plain aged-care facility, but it’s also one of the most homely.

Australian country music singer Smoky Dawson is singing from Daphne’s cassette player, so we lean in to hear Daphne’s voice more clearly. Her journey to aged care begins with a question of her own. The way it is asked, we know she has posed it many times before. ‘They took us children away. Why would they do that?’

Daphne’s story is of the Stolen Generations. They’re old now, the survivors among those who were wrenched from their families in that era. And the arc of their lives has landed them – often with reluctance, fear and sadness – in nursing homes all over the land.

 

EUGEN’S EYES ARE alight and his hands flutter with delight as he speaks. At one hundred years old, his body carries traces of the largest events of the twentieth century; these are part of his story.

‘Almost four years I served in Hitler’s army. Shot twice, here, you see my knee does not go straight? Captured, two years in camps, yes. After, well, things changed and I am in Berlin, and I work for the Allies. Berlin, you understand what that means? When the airlift is beginning, I think an atomic world war is coming and I look to get as far away as possible, to be safe. And I look on the map and I decide Australia.’ His hands form the shape of wings and he swoops us all the way around the globe and into this lounge chair, where eucalypts tower outside the window.

‘So many wonderful things are discovered every day. In my room two computers, yes.’ His voice is animated. ‘I stream radio from Moscow, and read always about new discoveries. The universe, a magical place it is!’

 

THINGS ARE HUMMING when we arrive at the only nursing home in a pastoral-industry town on the New South Wales western plains. Everyone is gearing up for the home’s annual fair: they’ve been making preserves in the kitchen. We’re sitting with Margie at a dining table where she’s arranging cutlery. Her cardigan is worn through at the elbows and she waves a fly away from her one good eye, which is firmly fixed on us.

‘My husband died when he come off the tractor. That was ’65. Well, everyone thought I’d sell but we’d worked hard, and me and the kids kept it running.’

She waves a knife at the fly.

‘It was a thousand acres and I was up with the sun every day. I loved going down to the sales. It could be hard in summer, and we nearly lost the place in the third drought. Kids are doing other things now. Jenny’s nursing and Jack’s driving big rigs.

‘Here? I’m not really sure how I ended up here. Just woke up one day, after a fall and this had been arranged. I’m going back to the farm as soon as I’m sorted. Although, I tell you what, it’s pretty nice that someone else prepares a hot meal. I like that. Ten rooms back home, you know, and now I only have to make my own bed!’

 

RESIDENTIAL AGED CARE is a repository of community memory, encapsulating the social history of the last seventy, eighty, one hundred years. This vast collection of narratives creates a picture of the world not long past and the people who breathed life into its form.

There is another picture here: the form of the care itself. What is offered and accepted as aged care is shaped by the values and preferences of those who receive it. As each generation moves towards needing care, they influence its character. But once in care, they are not the ones controlling the system or making the decisions that determine how services are delivered. Aged care holds up a mirror that tells us what we, today, are willing to value and invest in. Are we comfortable with the image in that mirror?

Those born on the eve of the Great Depression – like Daphne, Eugen and Margie – are our oldest citizens now. Their care is modest, and standardised like the pinnacle of industrial production that their generation presided over. They are sometimes called the ‘grateful generation’. Often stoical, looking on the bright side, uncomplaining, not wanting to be too much trouble. Which is to say, nothing like their Boomer children, who have poked and prodded aged-care companies for the last decade, trying with mixed success to change the services their parents receive.

But those same Boomers will soon arrive on aged-care facilities’ doorsteps as would-be residents with different stories to tell. If their generation is already shaping the future of care, their narratives will soon be the fabric of life in these homes.

What will that look like?

 

IN SYDNEY’S CBD we park ourselves in the function centre of a community organisation and wait for the women who’ve agreed to come and tell us about their plans for their future care. They stroll in with buzz cuts and sharp minds, and they mean business. These people burned their bras, forced their way into business-leadership roles through sheer merit and took no shit from suits who tried to condescend to them along the way. They are similarly direct about their final years – which they see as still ten or twenty years away.

‘I’m not moving into one of those places with lace curtains and Frank fucking Sinatra. I used to visit my aunt until she died the year before last. Honestly, forget dementia or aneurisms, I swear they just got bored to death. My aunt would wave one wobbly hand and mutter to me, “that one’s got the hots for me, you know”. And I thought, I sure hope so, Annie, because what else are you going to do here?’

Another takes up the point. ‘I don’t have confidence these services will provide a space that does any more than grudgingly tolerate a lesbian. Some of them are owned by churches that were backing the marriage equality no vote. The staff may try to distance themselves from that bigotry but, bottom line, you can’t trust the organisations. It has to be a lesbian space. I’m planning with a couple of friends to buy up a group of apartments and create a common care area, with a nurse.’

It’s certainly a picture of a promising future, but who will have access to this kind of customised care? Without a fundamental change to the way care is funded, this kind of flexibility (and expense) will not be universally available.

There are three things about the Boomers that are already influencing the direction of aged care: they are loud, they are wealthy, and they want to live their lives their way. They are the ones who fought to deinstitutionalise everything else – out-of-home care, mental-health care, disability care. Boomers have no intention of accepting a standard one-size-fits-all, mushy meal approach. They’ve spent their lives accustomed to, or running, individual consumer-centred systems already. Some tell us they would literally rather die than sacrifice their independence.

 

ON SYDNEY’S FRINGE, Anh is telling us about a reference work on the waterfalls of eastern New South Wales that he wrote many years ago. He had plans for future work, but management at his aged-care facility seemed to be having trouble getting with the program. Apparently, he murmurs drily, they thought it acceptable that he didn’t have broadband in his room. It took him nearly three months to force them to get it installed. Now, animated with excitement, he’s writing a sequel on inland hot springs. We are surprised to learn that there are enough springs to fill a bound volume.

Anh particularly recommends the Eulo mud baths, twelve hours’ drive away. ‘I’d like to get up there and take some really decent photos,’ he says, pausing as though pondering the weather. ‘Basically it’s a race between the book and the early onset dementia.’ As we’re leaving, we learn that Anh lives in a ‘memory support unit’.

This phrase – memory support unit – is an interesting one. It is both a euphemism for a dementia ward and a genuine attempt to reach beyond diagnosis and clinical care towards supporting people to live their fullest life and honour and hold the rich narrative that they inhabit.

But memory is complicated and its place in aged care is evolving. At the moment, whole buildings can feel like memory vaults, but as aged-care options change, memories and stories will be found less in these institutions. Residential care is increasingly unpopular compared with home care, with the quality of care increasingly unable to meet people’s expectations. At the leading edge of care, cottages are replacing wards; retirement living is being reorganised to provide care in people’s homes instead of in centralised locations. Residential care is becoming a last resort. Its use is declining except for the extremely frail, the terminally ill who lack family to provide round-the-clock care, and those with dementia symptoms too severe to be cared for in any other setting.

The aged-care industry often complains about perpetual policy reform and the push towards consumer-centred care. Sometimes the people who lead the sector sound more tired, more old-fashioned and less imaginative than the nonagenarians they are caring for. It is hard to know how prepared they are for the wave of expectations that will be arriving with the Boomer generation.

And what comes after that? When Generation X’s time comes, what narratives and expectations of care will they bring? What about the Ys and Zs?

 

ROBYN’S IN HER fifties and helping her mother organise a home-care package. Her household boasts six university degrees, but the correspondence from the aged-care system makes everyone feel a bit dim. How can you be declared eligible for something and then have to wait, again? What is this other list of fees even about?

We meet in a leafy Melbourne suburb to ask about her own care future.

‘I know it will be a different world by then. I mean, surely it has to be. I can’t imagine trying to navigate one of these places that’s been on the television; have you seen the way they handle people’s bodies?’ She pulls a face. ‘Coming out as transgender was easy. I was so grateful that everyone’ – her wave encompasses her parents, who are peering at their computer in the study – ‘has supported me and expressed nothing but love. I’ve had different careers, been made redundant, been divorced, moved cities four times, started a business; all of that is just life for my generation.’ She sighs. ‘But really, when I look at the care system and the way workers can behave, I’m scared for my future self. It’s the only thing that causes me fear.’

Australia’s Generation X will be the first not to have broken the law by coming out of the closet. They didn’t pioneer feminism: they grew up with it. Generation X invented the internet, which then changed everything about their work, recreation and friendships. They will have used Facebook for half a century, watched one another grow old on phone screens and may attend friends’ funerals in virtual reality.

And what of their memories? Will personal secrets and privacy be ideas abandoned after a lifetime of social media and distributed knowledge?
Or will Generation X wrap their personal worlds tight around themselves as the only private thing left?

These are lives lived through turbulence. Those now in middle age are living through economic transformation and disruption, with a degree of uncertainty about wealth and work unrivalled since at least the Great Depression. Stability in care may be less of an expectation than before; the failure of governments to manage global crises, ranging from terrorism to climate change, will make them committed to ensuring they have their own care arranged, because nothing – certainly not governments – can be counted on.

If we want the Xers to have enough money to pay for their aged care, then retirement income policy and superannuation arrangements will have to be completely reformed. Otherwise, the flow of inheritances that is currently going from parents to children will be dramatically reversed, and children will be the only people with enough money to pay the care costs of their elders.

 

THE BAKING SUN is punctuated by cloud as we reach a peeling weather­board cottage in Bundaberg. Inside, we move from room to room along a narrow strip of lino, then floorboards, then carpet worn to string, then lino again. There are household items everywhere – including six televisions and twenty-two aged desktop computers ready to be repaired, and twenty-four crates of books. At the end of the hall, there are two chairs and one stool, which make just enough room for us to meet Edward.

‘They killed my wife.’ He spits out the words, and then he cries, as he will from time to time for two hours. ‘They’ are the hospital where his wife went. They made mistakes, he tells us, ‘and she’s dead and they killed her’. We listen and look at this solitary life for which Edward was unprepared. He shares his kitchen table with a typewriter, two thermoses, a toaster, sixteen trays of catalogues and books, a clock, two irons (one in, one out of its box) and a hundred smaller objects, each meticulously attended to. Everything is cared for, but there will never be enough objects to fill Edward’s space. He has only one regular visitor: a pastor from the local evangelical church.

As we leave, Edward is still speaking to our receding backs as, chased by pelting rain, we scamper down his old concrete driveway. His voice is drowned by the summer storm that has arrived, washing away the sound of someone filled with the rage of loneliness.

Edward’s experience isn’t exceptional. It is a reminder of just how easy it is for people to become vulnerable and alone. The most under-reported feature of aged care is the large number of people who are lonely or isolated. Whether in flagship multistorey nursing homes or in their own houses, there are people without networks, without support, without friends, and this is significantly impacting their health and welfare. As family size gets smaller and life paths are geographically dispersed, we need to find new ways to share life stories and be part of one another’s ageing.

Our society is struggling to create communities that include everyone. We lack networks and systems to reach those without the resources, the means or the language to navigate a care system that they sometimes don’t even know they need. However, we have seen communities and services that offer connection and support for diverse and disadvantaged older people: it is possible.

Attending closely to the richness of older people’s lives is the key. Given the extensive conversation happening right now in Australia about the failings of aged care, a greater focus on older people’s voices must be the starting point for better care: closer attention in the design of services; greater say in the governing of those services; better recognition of what diverse life trajectories mean for people’s need. And above all, more openness to letting the narratives and contributions of our very oldest citizens enrich the lives of us all.

Some names, locations and details have been altered, and stories of more than one individual combined, to protect privacy and confidentiality.

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