As we approach Carers Week 2025 (12-18 October), I want to share a love story; but as often happens, this love story has the saddest of endings.

Karen was just 15, at Dapto High School, when she fell head over heels in love with the "unbelievably good-looking" Brian. Thankfully, the feeling was mutual, and for the rest of their lives these childhood sweethearts were inseparable.

There's no other way to describe Brian Johnson – he was a high school hero. He was Karen's hero. President of the school council, dux of the school, and a superstar on the footy field with his long blond locks flowing as he crossed for try after try.

Back in the 1970s, very few rugby league players studied beyond high school, but Brian was determined not to waste the smarts he'd been blessed with, and he became a teacher.

He and Karen married about the time he signed up with the famous St George Dragons and in his first year there in 1979 he won a premiership. He went on to play state of origin for NSW, and he appeared once for Australia.

There were playing and coaching opportunities in England, and again back in Australia, and throughout Karen was by Brian's side. Just as she was when Brian's health started to deteriorate, without warning.

'Letters for Brian'

Karen has shared her beautiful but harrowing love story in a book about her life with Brian. Titled Letters for Brian: Writing through the silence of dementia, it documents Brian's steady decline. There were many early signs that something wasn't quite right, but it was a decade or so later, in 2010, that "the neurologist gave us the diagnosis we had been dreading".

Karen's story is very personal, poignant and, reading it, there's no surprise it was written through many, many tears; as Karen recalls the toughest six years of her life, trying to support the man she adored as a wife, and then through the challenges of being Brian's principal carer.

It is clear in the book that while Karen carried the burden, there was also a huge amount of support. Family, dear friends, the old "football family" and, of course, the carers.

"Our regular care workers were our friends, visiting for 45 minutes every morning and half an hour every evening to help me shower and change Brian and put him back to bed," Karen wrote.

"They talked to Brian and showed him great respect. I learned from them daily. Rolling, washing and changing Brian was a two-person job. Sometimes there was no other person to help. They taught me tricks to help me to do it alone if he needed changing and cleaning when there was no one else. I also had a couple of hours' respite a week so I could just get out of the house. A care worker would come and just sit in the house, so Brian was not left alone. He wasn't even aware they were there."

In his foreword to the book, journalist and former champion rugby league coach Roy Masters sums up this challenging but important read about a man he once coached, and always admired.

"For most of the book, Karen details her confrontation with Brian's dementia, and it is written in simple yet beautiful language," Roy said. "It takes us on a journey from being 'the world's most dedicated girlfriend' to a devoted carer of a man we loved and respected. While Karen's story offers advice to partners of those suffering dementia, it deserves a wider readership because, essentially, it is a love story."

Special Carers Week event

In Carer's Week, on Tuesday, 14 October, I'll be speaking with Karen about her book and her life with Brian at a special, free community event at the Shellharbour Club.

As well as the conversation with Karen, there will be a panel discussion about caring, dementia and support networks, and performances by the Alchemy Choir, involving people living with dementia.

The event, which starts at 4pm, will also present an opportunity to hear about the Weavers Program from its manager, Sharon Stewart, from the Illawarra Women's Health Centre.

"It is a unique, peer-supported initiative that connects women who have cared for a loved-one living with dementia ('Weavers') with women who are currently providing unpaid care," Sharon said.

"Our approach is simple but powerful: one woman supporting another through a shared lived experience of care. The Weavers Program reduces this isolation by creating a network of support that builds women's resilience, reduces mental health strain, and fosters stronger, more connected communities.

"It is currently the only program of its kind in the region, focusing specifically on the emotional wellbeing of dementia carers and the shared strength of lived experience," Sharon added.

The Carers Week event is presented by the Illawarra Women's Health Centre and to register to attend book your tickets here