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Singer Mark Seymour can’t recall how long his mother, Paula, was living with dementia in the end. But he remembers clearly the point at which everything changed.
It was a weekend when he received a call from his sister to tell him things had gone wrong at their parents’ house in Melbourne’s north-eastern suburbs.
Musician Mark Seymour wants dementia to be a part of mainstream conversations.Credit: Alex Ellinghausen
“We went out there and it was just chaos. Things had tipped over and she was hallucinating,” he says.
Seymour’s dad was at his wit’s end. His mum was walking up and down corridors, roaming all over the house.
“They were behaviours we’d witnessed before, but he’d always said he could manage. And then there was this critical day, that it just became obvious he couldn’t any more,” Seymour recalls.
Things moved quickly from that point. Within 24 hours Paula was in hospital, diagnosed and institutionalised. Then they slowed down again.
“She was there [in a home] for – God, I don’t know – years. A long, long time. The thing is, the behaviour changes very gradually,” he says.
It is a journey the Hunters & Collectors frontman wants people to talk about more openly, as the number of Australians with dementia – currently about 400,000 – is projected to double in 30 years. Dementia is the country’s second-leading cause of death, and its impact on the lives of both sufferers and their families can be profound.
“There’s a period early on when there’s always the risk of psychosis, which means that they start behaving strangely and having an enormous anxiety. [That] psychotic time lasted a few weeks and that was pretty confronting,” Seymour explains.
“It’s pretty, pretty dark stuff… I’d always thought of my mother as being very intellectual; she was a very smart woman. And all of that had gone. I mean, she was communicating, but there was so much fear in the way she dealt with the world, and paranoia, too. I saw a side of my mother that was fearful, deeply anxious.”
But as the weeks – and then years – wore on, their relationship took on a new frame.
“You actually have to step up, be engaged with your parents when they’re like that. I found it really moving, because it was drawn out for so long. The strange thing about my relationship with my mother is that it actually improved, in a quite deep, emotional way,” he says.
Paula became more quiet as her dementia became more advanced. She spent a lot of time sleeping. Seymour was often out of town but at least once a week, often on his way back from the airport, he would visit.
For weeks and weeks, they sat in the sun-room together. He would simply hold her hand for about half an hour, until it became too much, which is when he would leave. She wouldn’t always register his coming or going. But that time spent alone just the two of them was a profound experience.
“The idea of having that kind of quiet, very peaceful contact with a parent… In a strange way, it probably would never have happened if she hadn’t been sick,” he says.
This was when Seymour started writing his song, Classrooms and Kitchens, which he describes as the story of his mother’s life and the stages of her dementia in three minutes.
It starts with his earliest childhood memory of her, in a kitchen in the small Victorian town of Corryong. By the third verse, she’s counting to 10 and forgetting things her children once said – the behaviours Seymour observed as her dementia progressed.
The chorus – “Lay down your long goodbye; She’s leaving, she’s leaving; It’s too late to wonder why” – marks his realisation there would never be a moment when he would say goodbye.
“It’s just that the enormous sense of loss, but protracted over a long period of time,” he says. “Because you’re immersed in that limbo, there’s an enormous amount of intimacy in that. If you’ve ever seen someone die, you’re witnessing something that’s really powerful.”
Years later, Seymour is an ambassador for Dementia Australia. He thinks it is important that as the disease becomes a more common, it is de-stigmatised, part of mainstream conversations.
“The country is getting older. The stats are really rolling that way and there are just hundreds of thousands of people who’ve got it,” he says.
“I actually think the biggest problem is not knowing what’s coming, and then finding the right people who will actually tell you what things mean: why is she behaving like that? What’s actually causing that?
“When I first encountered it, there was just this feeling of, ‘this is all a bit secretive and strange and alien’, which is odd, considering the number of people who’ve got it. There need to be more of a mainstream awareness that it’s something that everybody’s going to have to deal with.”
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