Karen Johnson has opened up about the challenges of caring for her husband, former St George Dragons player Brian Johnson, who was diagnosed with early-onset dementia at the age of 52. Her experiences are detailed in her book, Letters for Brian, which addresses the often unseen struggles faced by caregivers of those with dementia.
Karen recounted a poignant incident when she found Brian preparing to brush his teeth with a disposable razor instead of a toothbrush. This moment starkly illustrates the realities of dementia, as Brian retained the understanding that he needed toothpaste but could not remember the correct tool to use. “He couldn’t use cutlery,” Karen recalled, “he lost that well before he was in palliative care.” This gradual decline in Brian’s abilities has been an emotional journey for Karen, who frequently found herself stepping in to assist him with daily tasks.
The book comprises letters Karen wrote to Brian, his friends, former teammates, and medical professionals. These letters served as her coping mechanism during the times when she felt isolated while caring for him. “I started out talking to Brian, or if things went wrong, like if I wasn’t happy with what the doctor said,” she explained. “It was my way of mulling it over in my mind.”
While the book does not focus on Brian’s illustrious football career, Karen acknowledges that his background may attract readers to the deeper message about dementia care. She aims to connect with fellow caregivers and provide insight for friends and family, fostering understanding of the emotional toll involved.
Breaking the Silence on Caregiver Struggles
Karen emphasizes the importance of acknowledging the emotional struggles caregivers face. “I had quite a few carers around me in our support group, and we were all helping each other, but the emotional side, people keep it to themselves,” she noted. Many of her friends expressed surprise at the extent of her challenges, having had little idea of what she was enduring.
“It’s okay to lose it,” Karen stated, reflecting on the frustration that comes with caregiving. She illustrated this with the example of helping Brian put on his shoes and socks, often met with exasperation as he struggled to comply. “It would take an hour to get his shoes and socks on, with me screaming at him ‘just keep your foot still’,” she added.
As more retired athletes face diagnoses of conditions like Chronic Traumatic Encephalopathy (CTE), awareness of the risks associated with contact sports has grown. Although Brian’s geriatrician suggested that CTE might be a factor in his dementia, the only definitive diagnosis occurs posthumously. “Brian didn’t take a lot of head knocks—he hated being tackled,” Karen said. “But he was susceptible to it.”
Balancing Love for Rugby League with Concerns over Safety
Despite the possibility that rugby league contributed to her husband’s condition, Karen remains supportive of the sport. “How do you stop people doing what they want to do?” she questioned, recognizing the personal choices individuals make and their consequences. She has expressed appreciation for the measures now in place to protect players from head injuries.
Karen also highlighted the camaraderie within the rugby community, recalling how former teammates have reached out to support Brian. From being lifted up stairs to attending reunions, the bonds forged during their playing days have remained strong. “If I told him they were coming, his face would light up,” she reflected.
Through her book and advocacy, Karen Johnson strives to shed light on the realities of dementia caregiving while honoring her husband’s legacy as a beloved player. Letters for Brian is now available at various bookstores, including Collins Thirroul, and aims to provide solace and understanding to those on similar journeys.
