The West Kempsey couple was rocked by confirmation four years ago that Pauline was living with younger onset dementia – that is, when the condition manifests under the age of 65 years.

“At the beginning, it felt like Pauline had been handed down a death sentence,” Graham admits, “I really knew next to nothing about dementia.

“It felt like Pauline’s life was over and I’d simply wait for her to die.”

So it is for many couples – a shared life built together appears in danger of collapsing through circumstances beyond control.

But for Graham, it marked the start of a new role, that of a carer. Thankfully, as an habitual tinkerer, he put his ever-busy, ever-curious mind to viewing life through his wife’s eyes and clearing obstacles – literally and figuratively.

Pauline lives with a form of dementia that has spread from the base of the brain. This has affected her vision, and particularly her ability to perceive space, distance and form.

This affected her ability to walk normally and she would often knock items in the home onto the carpet.

A friend suggested Graham place markers on the floor so Pauline could move her feet along at a more regular pace, rather than shuffling. That was the first major breakthrough.

Around that time, Graham became aware of new Montessori-based training for dementia care – aimed at keeping people with the condition living at home longer by focusing on their individual abilities, interests and skills.”

“This was a revelation,” he says. “I learned that by creating an environment that would be easier for Pauline to go about her daily routine, and by keeping her engaged in meaningful activity, we could increase her independence.”

Graham noticed Pauline was disorientated on shiny floors, so when it came to replacing the carpet that had worn all sorts of food and drinks that she had knocked over, he opted for a matt grey vinyl that allowed her to focus clearly.

The couple walks on average a couple of kilometres daily now.

Through Omnicare Alliance, a not-for-profit provider of aged, disability and dementia support services that operates the Parklands Cottage day centre, Graham has respite from his 24/7 carer’s role.

Omnicare hosts a monthly carer chat group in Kempsey that brings together people like Graham, who have undergone the dementia support training.

“I can’t tell you how much that has improved life for Pauline and me,” he says.

“At the meetings it’s all people in the same boat as me, looking after a loved one with dementia.

“We share ideas, we talk about the challenges we face, we discuss our experiences.

“I guess I share a lot of practical tips I’ve used to help Pauline, but I get a lot of emotional support from carers and the comfort of knowing there are others going through what she and I are.

“We also get information from Kaye, who runs the group, about the support that’s available to us from the NDIS and My Aged Care.

“She gives us advice about how to provide support at home and keeps us up to date about the latest research and strategies.”

Numbers at the monthly meetings have dropped off, but Graham hopes they will pick up again.

“I’m surprised and disappointed there aren’t as many carers attending the carers’ meetings,” he says.

“The meetings have really helped me cope with the emotional challenges I’ve faced.

“They’re such a valuable resource for people like Pauline and me.”

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