Category: miscellaneous

Open letter to the Queensland Premier re voluntary euthanasia

This is an open letter to the Premier of Queensland, Annastacia Palaszczuk, the health minister, Steven Miles, and MP for Maiwar Michael Berkman (mylocal member). The letter was written last Monday; I am posting a slightly edited version here. The original letter was also sent to the state opposition leader Deb Frecklington and shadow health minister Ros Bates.

I’m writing to you in relation to the issue of assisted dying/voluntary euthanasia in Queensland.

On Sunday I visited my mother Sue in her aged care facility. Sue is 70, and is in the final stage of early-onset Alzheimer’s disease, which initially forced her to take stress leave (and eventually, her resignation) from her position at Queensland Health in 2002, 15 years ago. She was formally diagnosed with her illness in late 2011, nine years after developing discernable symptoms, though they were not recognised for what they were at the time.

Sue had considerable expertise in the field of dementia beyond her own lived experience. She spent over a decade in the senior levels of the department, writing and administering aged care policy, and many years before that working with elderly people in the community in the employ of Blue Care.

Last Sunday I sat with her for an hour. She is now bedridden and unable to move independently; her muscles are so rigid she is being administered morphine, as moving is painful for her. She was not cognisant of my presence in the room. She grinds her teeth involuntarily, her face is contorted, she has no control of her bodily functions (in the time I was with her she soiled herself twice in 20 minutes), and though she retains some power of speech, she is unable to communicate effectively.

I can tell you with absolute certainty that this indignity and pain is not what my mother wanted. This incredibly bright, capable, compassionate, outgoing woman, who remains much loved and did so much to improve health outcomes for elderly Queenslanders in particular, has seen her worst nightmare – as she often described it to us before her illness – visited upon her.

I have long since lost count of the number of times my mother has expressed her wish to die, at a time when she was fully aware of the horrors that awaited her, and which she is now enduring, as we all are with her. I can also tell you that she has previously asked both myself and my brother to help her to achieve her wish.

Allow me to express that as frankly as my mother intended: she was asking us to kill her. While that is not a request she would have made while in full command of her faculties, I ask you to imagine the terrible distress she was in to have made it, and the anguish that it caused for us.

Of course, we have no legislation providing for assisted dying/voluntary euthanasia in Queensland, as has recently been passed in Victoria.

My brother and I were lucky to have secured power of attorney to make financial and legal decisions on behalf of Sue, and also an advance health directive. However, even if we lived in Victoria, Sue’s legal lack of capacity to make decisions after her diagnosis, despite the fact she retained insight into her condition until very late in the piece, would have meant she did not qualify for assistance under that legislation.

This was contrary to the advice of Alzheimer’s Australia (Victoria), which made the following key recommendations:

  1. That limiting eligibility to a prognosis of days or weeks remaining prohibits people with progressively deteriorating cognitive impairment from accessing voluntary assisted dying.
  2. That a decline in quality of life or function is a better indicator of eligibility for people with a degenerative illness.
  3. That psychological suffering be recognised in the legislation in addition to physical suffering.
  4. That the term ‘mental illness’ should be clearly defined as distinct from cognitive impairment.
  5. That people with degenerative disorders should have the right to make enduring requests for voluntary assisted dying in an advance care plan.
  6. That family members are included in assisted dying decision-making, with the person’s consent and with proper protections for the person.
  7. That the person with dementia’s right to be fully informed is upheld and that medical practitioners are appropriately trained in dementia care.

I naturally appreciate this is a difficult and sensitive issue. However, it’s a conversation that Australians need to have – and it isn’t going to go away. Dementia is now the leading cause of death for women in Australia and the second leading cause of death overall with more than 425,000 sufferers nationwide.

The estimated cost of dementia-related illness in 2018 is $15 billion. The toll it exacts on families and communities – including the knock-on health effects – is perhaps less measurable, but I can tell you the impact on myself and our family has been profound. I do not say this is to classify anyone with a terminal illness as a burden, but to consider the escalating financial and mostly hidden emotional cost of prolonging unnecessary suffering, often artificially, and against the will of individuals and their families.

I am therefore calling on your government to consider opening formal discussions regarding the potential development of assisted dying legislation in Queensland. The establishment of a parliamentary committee of inquiry, taking submissions from the community, would be an obvious first step. It could then make recommendations which could lead to the possible introduction of legislation in the next term of parliament.

I also request that due consideration be given to provision being made for the hundreds of thousands of sufferers of this terrible and terminal illness, and to their families, who suffer with them, in the event of such legislation being introduced.

First published on my Patreon page, 9 February 2018; reprinted by Brisbane Times

(I want my) music on TV back

For two hours on Sunday night, it felt like a good proportion of Australia was gathered around a gigantic campfire. That campfire was burning on the steps of the Sydney Opera House, where Paul Kelly and his band were holding court – not just for the tens of thousands of people lucky enough to be there, but for hundreds of thousands more tuning in around the country, watching the ABC livestream and tweeting simultaneously.

Some say it’s rude to talk at gigs, but for me, watching from home, the excited chatter about what we were seeing added to the communal feel as #PaulKellyLive became the top-trending hashtag in the country. There was a collective awareness that we were witnessing a celebrated songwriter at the top of his game, and at a peak of popularity – at the age of 62, Kelly’s most recent album Life Is Fine was his first No. 1, a richly deserved success for a recording that’s up there with his best work.

Then someone said on Twitter: “We should have live music on the ABC every Sunday night.” Funny he should mention it: only two hours earlier, the ABC had screened its latest instalment of Classic Countdown, a restored best-of the vintage program which has also been a big hit for the national broadcaster. Cannily, it screened in Countdown’s original time slot of 6pm Sunday, adding to the nostalgia of a sizeable audience who grew up on the show between 1974 and 1987.

Of course, the music on Countdown wasn’t strictly live, and the warm glow of nostalgia helps us forget the reality: at the time, great Countdown moments (last night’s highlight was Divine performing You Think You’re A Man) could sometimes be a bit like finding diamonds in dog turds. Such moments, though, were miracles of Australian television that probably wouldn’t be allowed to happen today.

So it’s reasonable to ask why we don’t have a dedicated live music program, the endless parade of canned karaoke quests aside. If we did, perhaps we wouldn’t be wallowing in nostalgia for shows like Countdown and Recovery, at least not to the same degree. Australia has a rich history of music on television going back to TV Disc Jockey in 1957, which evolved into Australia’s version of the American program Bandstand.

In other words, Australia has had rock & roll on television pretty much as long as we’ve had both television (which launched in this country in 1956) and rock & roll.

After Bandstand, we had Six O’Clock Rock hosted by Johnny O’Keefe, The Go!! Show, GTK (Get To Know), and the Seven network’s Sounds, on to Rock Arena, SBS’s Rock Around the World (whose host Basia Bonkowski was the subject of a memorable tribute by Melbourne’s Painters & Dockers), Beatbox, The Noise, Studio 22 and Nomad – the show which introduced us to a trio of teenagers called Silverchair.

Variety shows gave priceless additional exposure to Australian artists. Even Hey Hey It’s Saturday had its moments: other than that time Iggy Pop greeted Molly Meldrum with “Hiya Dogface!” before terrorising innocent teenagers with a microphone stand, not even Countdown threw up anything to match TISM’s performance of Saturday Night Palsy, the like of which has not been seen before or since.

Perhaps that’s the problem. Even mimed performances on live television carried that tantalising possibility of a few minutes of anarchy. All it took was a performer, or group of performers, willing to break the format’s fourth wall and strip the carefully constructed reality of television away – at which point things perhaps got a bit too real for executive producers to handle.

Which brings me to the events of 2 November 1988.

On that evening, a Sydney noise-rock group called Lubricated Goat, led by one Stu Spasm, performed the lead track from their just-released album Paddock Of Love on Andrew Denton’s program Blah Blah Blah. The song was called In The Raw, and in the raw was exactly how the group played it – much to the horror of sensitive viewers who jammed the ABC switchboard, not to mention tabloid editors and talkback radio hosts.

Eleven years after punk, it was Australia’s version of “The filth and the fury” – that Daily Mirror headline that followed the Sex Pistols’ infamous appearance on Bill Grundy’s Today program in December 1976. Tim Bowden, the genial host of the ABC’s popular feedback program Backchat, responded to the moral panic by appearing shirtless behind his desk while reading outraged letters to Aunty aloud.

An ABC spokesperson told Guardian Australia the network hoped to build on the success of the AusMusic Month broadcasts: Paul Kelly last night and Crowded House last year. They said music programming, including live concerts, “is something we continue to be very committed to … the upcoming reorganisation of our content teams will provide more opportunities for our music and entertainment teams to work closely together”.

I hope they’re right. It has been far too long since live music was a regular part of our Sunday evenings, not to mention our Monday water-cooler discussions. Sure, it carries an element of risk – but as Paul Kelly showed, it has the potential for joy as well. And without the risks, we’d have none of those classic moments that we continue to celebrate today.

First published in The Guardian, 20 November 2017

Twitch and shout

For a bird-watching exercise, you don’t see a lot of birds on the Twitchathon. If you’ve never heard of this obscure sporting event, it’s a race: teams of birders pile into their cars and tear around the state, attempting to see or hear as many species as possible within an eight or 24-hour period. Because time is of the essence, once a bird’s call is recognised, actually spotting it becomes redundant. It’s on the list: go!

For this year’s Victorian event on 7-8 November, coordinated by Birdlife Australia as a fundraiser for endangered species, I was in one of the handful of 24-hour teams: the Manky Shearwaters. (It’s a pun on a type of seabird, the Manx Shearwater.) Others were in the more civilised eight-hour race: the Lame Ducks; the Filthy Flockers, the Soft Cockatiels. I’m not sure what lends birders towards this kind of self-deprecation.

There’s a hint of madness about the 24-hour version, though, which has necessitated some safety modifications over the years. Once, teams finished at the offices of what used to be Birds Australia, in the Melbourne suburb of Camberwell. With teams driving around the clock and totals docked by one bird for every five minutes after the appointed time, it was a speed and fatigue-fuelled lawsuit waiting to happen.

Now, with the re-badged and relocated organisation’s offices in the city, teams simply phone in their totals at the Twitchathon’s end from wherever they finish. It all works on an honour system: three members out of a team of four must agree on each species that has been seen or heard. So, too, does the mandatory three hours’ rest and a commitment to rotate drivers.

More than ever, even in the age of digital photography, which can be so easily manipulated, a birder’s reputation is everything. The punishment for those who break the code – such as the observer who confessed to hoaxing a house crow to falsely claim the Victorian “Big Year” record in 2014 – is disqualification, social exclusion, and a lifetime supply of derision.

The trick to the Twitchathon is twofold. The first is covering as many different habitats as possible, for each ecosystem supports its own distinctive array of avifauna (hence the long hours spent behind the wheel). The second is not trying too hard to find rare birds; rather, it’s about not dipping on the common ones. It’s surprisingly easy to miss, say, a rainbow lorikeet when you’re the one on the fly.

Team member Sean Dooley – editor of Birdlife Australia’s quarterly magazine and for over a decade the record-holder for the most number of birds seen within Australia in a calendar year (703, if you must know) – says part of the allure of the ’Thon is the thrill of seeing a plan come together. “I just want that perfect day of birding, where everything falls into place and you don’t miss out on a thing.”

Which, naturally, never happens. But there’s a lot of what’s known in the game as “sussing” in the weeks and months beforehand – checking out locations, finding hot-spots, avoiding dead zones, and crunching numbers: charting distances and times to destinations, working out how many hours (or minutes) to spend in each of them, and calculating how many species can be relied upon to reveal themselves.

The Manky Shearwaters’ quest begins at the Nobbies, which juts into Western Port Bay from the far end of Phillip Island. We’ve got a telescope locked onto a Peregrine Falcon, on its eyrie above Seal Rocks. Behind us, a penguin’s backside sticks half-way out of its wooden box burrow. Cormorants and a lone oystercatcher are visible on the rocks below; around us gulls and terns mill and scream.

IMG_5216
L/R: Chris Watson, Sean Dooley, Steve Davidson

They’re all on the list within seconds of the 4pm start, then we’ve got just a few minutes to scan the ocean. I spot a surprise: the hulking shape of a Giant-Petrel close inshore. Sadly, though, not close enough: where the bill tip of a Southern Giant-Petrel is pale green, a Northern Giant-Petrel’s is reddish. And none of us can confirm which it is before it veers away. Bird identification often rests on such details.

Within an hour, our total is up to 71. But we’re already missing species, too. Observation Point fails to produce either Whimbrel or Eastern Curlew, large shorebirds that can usually be relied upon here. Fisher’s Wetland, which held a pair of Black-tailed Native-hens half an hour before the count, is closed. We won’t see them again. A sick Sulphur-crested Cockatoo sits forlornly on a lump of seaweed in the salt water.

From there it’s off to Bunyip State Park, near Gembrook in the foothills of the Great Dividing Range. It feels more like rally driving: at one point we nearly collect a four-wheel drive head-on. We pull up on blind corners with nary a thought for what’s around the bend. It’s wet forest country, and nearly everything we add is heard rather than seen; calls we have to parse from the expert mimicry of the local lyrebirds.

After listening for night birds (unnerving nearby campers with bad imitations of the falling bomb-like whistle of Sooty Owls), we drive to Terrick Terrick National Park, in the state’s far north, taking our designated rest period between 2.45 and 5.45am. Once, the native grasslands here were the Victorian stronghold for the endangered Plains-wanderer; now they’re down to just a handful of pairs.

DSC01018By the next morning, this sense of loss is becoming a theme. Birds are scarce. As we scour the box-ironbark woodlands of Heathcote, struggling to locate previously common species like Speckled Warblers and Scarlet Robins, Dooley reflects on the silence: “Whenever I come into these forests in particular, no matter what I see, I’m just struck with this overwhelming sense of tragedy that haunts the forest.

“I palpably, viscerally feel the loss of the birds that used to be here. It becomes this really bittersweet exercise. You could go through your notebooks, and you probably wouldn’t notice that much of a difference in terms of what species you’ve logged over the years. You’d probably still manage to find them, but what’s not reflected is the lower numbers, and the extra time and effort it takes to do so.”

We finish at the sewerage treatment works at Werribee. It’s a Mecca for waterfowl and waders but, again, numbers are down. We have to search for a Curlew Sandpiper, a handsome Siberian migrant which once occurred in flocks of thousands here over summer. The population using the east Asian-Australasian flyway is now critically endangered due to habitat loss in the Yellow Sea.

A Freckled Duck (on the wondrously named Lake Borrie) is our 200th species as we approach the finish line; we’ll only add one more. There’s a few tame high-fives on the stroke of four but, mostly, the feeling is anti-climactic, like a drawn AFL grand final: players slumped to the turf, not knowing if they’ve won or lost. The results won’t be announced for another two days. We’ve covered just shy of 1000 kilometres.

As it turns out, we could have knocked off at midnight: our total of 201 beats our less experienced 24-hour campaigners by more than 80, but well short of the record of 225, the sort of total only attainable with a lot of luck in an exceptional year. Still, we’ve raised a fair amount of cash towards the protection of mallee birds, some of which are only a single bad bushfire away from permanent obliteration.

Later, once our bodies have sufficiently uncrinkled themselves from the vehicle, talk will turn to 2016 – the extra time we’ll spend sussing out sites; the mistakes we won’t make; what parts of our route we’ll change to save time or potentially add new species to the list. All in search of that perfect birding day which, like a rainbow, seems to recede further and further away every year.

First published in The Saturday Paper, December 19 2015

The forgotten Christmas

“Here, mum.”

I hold the fork close to her mouth. Turkey, cranberry, a little salad. “Here.” She looks around, moving her head from side to side. One hand picks up her knife, holds it back to front, puts it down again. Then she picks up a spoon. “No, no, here. On your fork.” She puts the spoon down, and reaches for her serviette, clutching it hard in her hand.

My brother and mother-in-law are engaged in Christmas conversation and I can sense their chatter is disturbing to mum; she can follow neither them nor my directions. “Can you shush a minute? Mum, here. Here.” I’ve got her attention, but she can’t see what I’m trying to draw it towards.

“Don’t get frustrated,” my brother admonishes softly, but it’s hard, so hard, to quell the feelings of impatience, mingled with disbelief, followed by guilt. Infants learn to understand pointing by 12 months. My mother can’t see, or recognise, the food being waved in front of her face. This is what the later stages of Alzheimer’s disease looks like.

Before lunch, my brother had put in her favourite dangling cat earrings. We took her to the bathroom so she could admire them in the mirror but she barely recognised herself, let alone the jewellery. “Can you see them?” Her eyes were barely open. “Yes,” she said eventually, so we’d stop asking.

I’d picked her up from her facility earlier that day. Her carers had helped to get her ready. “I had no idea it was Christmas day,” she told me, and it was true: all that tinsel amounted to nothing. Any sense of time was obliterated for my mother long ago, but Christmas was the last important date to go, long after birthdays were forgotten.

“Here,” I say gently. Finally her eyes register the food. She takes it into her mouth, so deeply so I’m afraid the teeth of the fork will scratch her palette. She chews slowly. Soon, I think to myself, she will forget to swallow. Forget to breathe. Forget the things that we take for granted as nothing more than life-preserving instinct.

I’d read a Christmas card to her before lunch. “We will remember you long after you’ve forgotten us,” I told her. She is already forgetting. We re-introduce ourselves to her these days. Sometimes she gets cross. “Of course I know who you are,” she says. Sometimes, she does. Other times, it’s obvious she doesn’t.

“I’m Andrew, your son,” I will say, but her face is as cloudy as Melbourne. Our names, our relationships to her are becoming a mystery. “My son?” she says, puzzled. The word itself has no meaning. Later, when the penny drops, she will become distressed. “I’m off the planet, aren’t I?” she says.

“You’re just having a bad day,” I’ll reply. But mum holds onto a residual insight into her condition that increases her suffering. She worked for years in aged care, becoming an expert in the field. She often told me she could not imagine anything worse than Alzheimer’s disease. She resisted seeking treatment for years.

When we sold her house to fund her care, earlier this year, I trawled through boxes of personal effects. Among them was a 2002 letter from a psychologist to her GP, written after she’d taken stress leave from her job in the health department. It referred to problems with memory and completing tasks. She was 55.

Fourteen years is a long time to watch someone you love disintegrate. It’s also about average for an Alzheimer’s sufferer – seven years from onset to diagnosis; seven from diagnosis to death. There are even seven stages of the disease, according to the most commonly used scale. Mum is in stage six.

It took us years to connect the dots. The irrational outbursts of temper (frankly, she was always prone to those). The onset of panic attacks, as her life and career began to fall apart. Her terror of driving – although the greater terror was the loss of independence after we took the keys from her, following her diagnosis in late 2011.

Suddenly her eyes are open, and there’s an flash of recognition. “I know who you’re talking about,” she exclaims, and it seems she does. I shoot a look at my brother. “She’s back,” I mutter. For a few minutes, she is engaged. She even takes the fork from my hand, though as she holds it at such a steep angle that food falls in her lap.

“This is just lovely,” she says. “I’m the happiest person in the world.” And at that moment, perhaps she is.

A couple of days later I visit her. Earlier, she’d called my brother in a panic, hyperventilating, terrified that she had been abandoned. But by the time I get to her she’s lying peacefully on her bed. “Hello, mum.” She looks up, and her faces creases into an huge smile of relief.

“I thought you didn’t love me any more,” she says, clutching on to me.

“Of course I do. We all do,” I say. “Do you remember Christmas, a couple of days ago? You had a lovely time.”

“Did I?”

“Yes, you did. And Mark came to visit you yesterday.”

“Mark?” Fog veils her face again.

“Yes, Mark. Here he is.” I point to a picture of my brother on the wall behind her with our parents, but again, she can’t follow my finger, scarcely raising her head. Instead she points at a soft toy I’d given her as a present. She’s got quite a collection of them now.

She asks me what I’ve been up to. I tell her I’ve been writing; that I’ve just had a piece on Stevie Wright published. “Who was he again?” I explain he was the singer of the Easybeats, a band of her youth. “I remember him!” she says, clapping. I sing her a few lines from Friday On My Mind. Remarkably, she picks up some of the tune.

“How old was he?” she asks.

“Sixty-eight,” I say.

“That’s awful! He was he same age as me. It could have been me,” she says. Despite her own condition, mum’s empathy for others is intact. But I’m more impressed that on this occasion, she’s correctly remembered her own age.

At least she’s calmed down, and she’s tired. So am I, and I don’t have it in me to stay longer than half an hour this time. Once she’s sufficiently reassured, I make my excuses and leave. I tell myself as I drive away, next time I’ll stay longer; take her out for coffee.

Probably, I think to myself, she’s seen her last Christmas – certainly the last one she’ll be sentient for. The thought feels like a relief. It is not fair for anyone to suffer for so long; to lose touch with everything that defines and connects you to others. But then I think of her telling me she’s the happiest person in the world, and I’m not so sure.

First published in The Guardian, 4 January 2016

Poor Ned, the horse that never made it

He was the horse no one had ever heard of. The undistinguished battler who never captured the nation’s heart. Indeed, he failed to capture anyone’s, except perhaps his owners, until they too fell out of love with him; their dreams of riches and reflected glory dashed.

Unlike Kingston Town, Black Caviar or Red Cadeaux, Poor Ned occupies no special place in racing history. He never even reached the track: for all the frenzied efforts of his trainers, no whisper in Poor Ned’s ear or whip on his hindquarters could spur him to go any bloody faster.

No one sent cards or flowers wishing him luck. No ashes were to be scattered at Flemington, scene of not a single Ned appearance. No one ever cheered him down a home straight anywhere. He never grew to be an old warrior. He was just another two-year-old nag who wasn’t good enough.

He wasn’t handsome enough for dressage, and he couldn’t jump to save himself. He was too nervous for kids to ride on. Even professional jockeys found him hard work. The best that could be said about Poor Ned is that no one other than his owners ever lost money on him.

He was, in all respects, a disappointment. So his owners regretfully made the decision that, all agreed, was in their own best interests. After all, he was costing them around a hundred bucks a day. And Poor Ned was high maintenance. He couldn’t cope with the stalls, and he wasn’t much more docile in the stables.

He never gave anyone any joy. He competed with no distinction; in fact he was so lacking in distinction that he never competed at all. He was fragile and cranky, and no one will miss him, because no one other than his owners and handlers knew he ever existed. He served no useful purpose whatsoever.

No one ever turned out in their finest for him. No jewellery was flashed; no top hats or tails were worn; no ostentation of any kind was ever required. At least, being no peacock, he never had to put himself on display either. No one ever cooed their admiration at his perfect physique before he took to the track.

So to the knackery he went, unmourned. They led him to the kill-box and humanely euthanised him with a bullet to the head. Where Red Cadeaux was the third horse in two years to die following participation in the Melbourne Cup, Poor Ned was just another horse that never made it.

There’s more where Poor Ned came from, though. About 15,000 thoroughbred foals are bred each year in this country. Some of them are bought for millions; when they fail, they might fetch a couple of hundred in the saleyards. But gambling is big business. Sometimes you have to cut your losses.

They ground Poor Ned up for dog food, but no one ever got attached enough to him to care. No one outside of his connections knew his name, and nobody in his industry’s governing body recorded his fate. He wasn’t even a statistic, because no official statistics on horse wastage are recorded.

Apparently, though, it’s roughly 10,000 horses a year. Horses that, like Poor Ned, simply didn’t have the necessary fast-twitch fibres. Or they lacked the temperament for racing, or they broke down injured, or were just too much trouble. 10,000 horses that the nation never stopped for.

First published in The Guardian, 23 November 2015

Dying by degrees

Songs don’t have trigger warnings; if they did, they wouldn’t hit us so damn hard. News stories might warn viewers or readers in advance that the content they are about to consume may be graphic but, in art, an R rating or parental advisory sticker shouldn’t protect us from the shock and awe of emotional impact.

Some of the great songs in history cover intensely difficult terrain. Some of them even become fluke hits: Suzanne Vega’s late-’80s classic Luka, a study of child abuse, is one. Archie Roach’s Took The Children Away endures, too, because you didn’t have to be a member of the Stolen Generations to be moved by Roach’s suffering.

About a year ago, I heard a song by Melbourne songwriter Jen Cloher, Hold My Hand, the last song on her most recent album In Blood Memory. It hit me like a truck. The song is a conversation between two old lovers. One asks the other to tell the story of how they first met. He responds:

Well my dear, it was cold,

Shivering, nearly snow

You wore my favourite coat.

But his answer is instantly forgotten, and the conversation, like the song, becomes circular:

Did I dear? I forget,

Did our love begin there?

How did we meet again?

Cloher’s mother, Dorothy Urlich Cloher, died on Christmas Day of 2011. She had been diagnosed with Alzheimer’s disease four years earlier. A distinguished New Zealand academic, her last creative act had been an acclaimed book on the famous Maori warrior chief Hongi Hika.

She had written the book quickly, aware her memory was failing, from her desk overlooking the Hauraki Gulf. Jen would write the bulk of her second album, Hidden Hands, at the same desk while her mother remained “upstairs, staring out to sea, losing herself slowly to the disease”.

In a blog post from 2012, she described the scene confronting her: “Her study, once a hub of academic achievement, was now a mess of scrawled notes to self and handwritten instructions furiously underlined with red pen: ‘1. Turn power on at the wall. 2. Push ON button below desk 3. Wait for computer to load 4. Type in username Dorothy password Nunky.’”

Seeing our own stories reflected through the eyes of others can make our own travails both more real and more bearable, because they take us outside the situation and allow us to view them from a distance. They also allow us to feel.

My mother, Sue, was diagnosed with Alzheimer’s in November 2011, aged 64. The symptoms had been there since at least 2002. That was when she first took leave from her job in the upper levels of the Queensland Health bureaucracy where, in a hideous irony, she worked on devising and implementing aged care policy.

So mum knows more about Alzheimer’s disease than I’ve forgotten. Except that now she’s forgotten she has it, we have to keep explaining to her why she can’t go home. In February, we placed her in long-term care, when her needs became too acute for us to cope with; her house was sold last week to fund her placement.

In the same blog post, Cloher tells the story of a disastrous journey she undertook with her mother to visit her childhood home in the far north of New Zealand, only to see her become disoriented and distressed when she failed to recognise either her relatives or her surroundings. By the middle of their first night away, Cloher felt she had no choice but to take her home.

“The drive back to Auckland was five hours of winding coastal road in the rain and I had moments of feeling insane,” Cloher writes. “Mum stayed awake for the whole journey home, asking every five minutes where we were going and then, upon receiving the explanation, apologising for not being able to remember where we were. ‘What’s wrong with me Jennifer?’ she asked at one point.”

A couple of years ago, aware that opportunities for mum to visit those closest to her were diminishing rapidly, I accompanied her from her home in Brisbane to her old home town, Melbourne, before driving her to visit my father – her ex-husband, with whom she has remained friends – in Wangaratta.

On the plane, unable to comprehend distance or time, she had quickly become confused and frightened. “I didn’t realise how far it was,” she kept saying. “Wouldn’t it have been quicker to drive?”

Later, as we drove the three hours up the Hume Highway, she became more animated as she thought she recognised various landmarks. It felt like being trapped in a scene from Mother And Son. “It all looks exactly as I remembered,” she would exclaim. Seconds later, the fog would descend again: “I have absolutely no idea where we are,” she said crossly.

Love, Cloher concludes in Hold My Hand, is “more than a reward, or a balm we use to soothe.” It’s an ongoing act of supreme patience and loyalty. Alzheimer’s is demanding; grief is a luxury carers can’t often afford as they lurch from one daily crisis to another. It’s only now we know she’s safe that we can begin to let go.

Shortly before the house settled, I took her on a final tour of what had been her home. She lingered in the garden. She’d known the names of everything that she’d once nurtured; now she bent to touch a tiny purple flower, blooming brilliantly, and tearfully asked me what it was. I couldn’t tell her.

Once, she told me she was dying by degrees, as everything that connected her to the world was slowly erased. Sometimes, I think that it’s not until she’s actually gone that we will get our own memories of her back. But, to quote another of Cloher’s songs, she is going, she is not gone. All we can do is remind her we’re still here.

First published in Spectrum (The Age/Sydney Morning Herald), 15 August 2015