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

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