Karen Johnson watched her husband, former St George Dragons footballer Brian Johnson, pick up a disposable razor and begin to apply toothpaste to it. It was a stark moment that highlighted the cruel, piece-by-piece theft of dementia. Fortunately, she was there to intervene.
The Reality of Caring for a Loved One with Dementia
Brian Johnson, a member of the Dragons' 1979 premiership-winning team, was diagnosed with early-onset dementia at just 52 years of age. His wife Karen has now chronicled their journey in a deeply personal book titled Letters for Brian. The book shifts focus from the glory days on the football field to the challenging reality of life after sport.
The incident with the razor was not an isolated one. Brian progressively lost the ability to perform basic tasks. Using cutlery became impossible, forcing him to eat with his hands long before he entered palliative care. The simple act of holding a pen was beyond his capability.
"You don't realise that you learn these things and you remember how to do them," Karen reflected, emphasising how dementia unravels fundamental life skills.
'Letters for Brian': A Lifeline for a Carer
The book originated from the letters Karen wrote as a coping mechanism during the intense period of caring for Brian at home. With limited opportunities to leave the house—often just six to eight hours per week in short bursts—she turned to writing to process her experiences.
"If things went wrong or if things went right even in the end, I just debriefed to myself at the end of the day," she explained. The letters were addressed to Brian, to friends, to doctors, and to his former teammates. They became her way of mulling over the daily struggles and rare victories when she had no one else to talk to.
While Brian's footballing profile may draw readers in, Karen is clear that this is not a book about his sporting career. It is a resource for other carers, aiming to show them they are not alone in their journey, and to help friends and family understand the immense challenges involved.
'It's Okay to Lose It': Breaking the Carer's Silence
One of the book's core messages is the permission it gives to carers to acknowledge their own emotional turmoil. Karen speaks candidly about the pressure to appear in control, which often leads carers to hide their true feelings.
"A number of people that are friends of mine who were on that journey with us for a lot of the time, have said to me since 'I had no idea what you were going through'," she said.
She wants to normalise the frustration and grief that carers experience. Recounting how it could take an hour to put Brian's shoes and socks on, she admits to sometimes screaming in frustration. "It's okay to lose it every now and again. We're not saints," she asserts, offering a powerful message of self-compassion.
The Football Link and a Community's Support
While awareness grows around Chronic Traumatic Encephalopathy (CTE) and its link to dementia in contact sports, Karen cannot say for certain if rugby league caused Brian's condition, as a definitive diagnosis requires an autopsy, which was not performed.
However, his geriatrician suspected it played a role. Karen holds no bitterness toward the sport, adopting a pragmatic view. "People still smoke. They know about lung cancer, they still smoke. You make life choices and there are consequences," she said, while applauding modern efforts to mitigate head injuries.
Her experience has also shown her the profound camaraderie within the rugby league community. She recalls the unwavering support from Brian's old teammates, including legends like Les Boyd, who welcomed them into his home. Members of the 1979 premiership team insisted Brian attend annual reunions, carefully watching over him.
"If I told him they were coming, his face would light up," Karen said. "There's a rapport among team members that I never got to experience, but he loved seeing all those people. That was such a big part of his life."
Letters for Brian by Karen Johnson is available at Collins Bookstore in Thirroul and other selected retailers.
