Wife reveals harrowing reality of living with former rugby league player battling CTE and dementia

For over a decade, Sandra Crow has fought a private battle few could imagine, caring for her husband Trevor – a once-gifted second rower and respected rugby league administrator – as dementia tears apart the life they built together.

Trevor Crow, 63, is now non-verbal, often bedridden, wears an adult nappy and requires help to feed himself. 

His rapid decline is believed to be the result of Chronic Traumatic Encephalopathy (CTE), a brain disease linked to repeated head trauma during his 30-year rugby league career.

Sandra, his wife of 46 years, has shielded him from public view, but a recent emotional breakdown has pushed her to share their story. 

‘To just take Trevor’s and my life, just to end it … the pain would be over, because this pain is just unbearable,’ she told The Australian. 

‘It’s too much for anybody to manage this disease.’

Trevor’s decline began around 2015 when Sandra noticed sudden bursts of anger. Her once calm and cheerful husband – who captained NSW Country and played 11 first-grade games for St George – had changed. 

He had secretly begun seeing a psychologist, battling depression and suicidal thoughts.

As Trevor’s condition worsened, Sandra and their adult son Jordan tried to manage with support from an NDIS care team. 

But by last year, the situation became unsafe. Trevor, once the chairman of Newcastle Rugby League and a respected figure on rugby boards, could no longer remain at home.

There were violent outbursts, verbal abuse, and the heartbreaking moment when Trevor stopped recognising Sandra and Jordan. 

‘It’s just an avalanche of traumatic disturbances every day, all day,’ Sandra said.

Trevor’s medical team has little doubt his condition stems from repeated concussions – a view shared by Associate Professor Rowena Mobbs of the Queensland Brain Institute. 

‘His wife, Sandra, is a champion too for enduring this cruel and exhausting disease. It’s a marathon, dementia,’ Mobbs said.

Since leaving home, Trevor has cycled through aged care homes, hospitals and temporary facilities. 

In one care home, he absconded within an hour of arrival. When he was finally found, he’d spent three hours trapped in a toilet, unable to find his way out.

Sandra received 22 pages of incident reports from the facility, detailing violent outbursts and abusive behaviour. 

‘It just screams the fact that aged-care facilities aren’t able to look after my husband,’ she says. ‘He’s only 63.’

During a hospital stay, Sandra found Trevor in a foetal position, heavily sedated, cold, and wearing only a nappy and a shirt from two days earlier. 

‘It was disgraceful,’ she said. 

After finally coaxing him into a shower with the help of a nurse, both women were physically attacked by Trevor.

Despite medical advice that Trevor requires one-on-one, high-intensity care, the NDIS initially approved only shared support in a community group home. 

Occupational therapist Nikki Cousins warned it would end in violence: ‘They don’t have the skills to deal with the high level of physical aggression that Trevor displays.’

Eventually, the NDIS approved 90 days of one-on-one community care. But even this solution brings uncertainty. 

Sandra remains anxious. ‘They really don’t know how to look after Trevor,’ she said, describing how she had to show a carer how to shower him while he violently resisted.

The couple’s experience is not unique. Other former players – including Wally Lewis, Mark Carroll, Steve Mortimer, Mario Fenech and Ian Roberts – have revealed their own battles with probable CTE, calling for better care, earlier diagnosis and stronger protocols around head injury.

Trevor’s story mirrors that of former NRL coach Paul Green, whose posthumous CTE diagnosis was one of the most severe seen in an Australian player. Like Green, Trevor began football at age five – a common thread among many diagnosed.

Keith Titmuss, a Manly Sea Eagles prospect who died at just 20, was diagnosed posthumously with Stage 2 CTE, highlighting the dangers even in junior sport. 

‘The brain does not discriminate between 1000 first-grade tackles and 1000 sustained in second grade,’ Mobbs said.

Sandra believes the NRL has failed to support players who built the game. 

‘Without our husbands and our partners … it wouldn’t be where it is,’ she said. ‘The game that brought Trevor so much joy is going to actually take his life.’

She’s made a list of ideas for how the league can support families like hers and is waiting for the NRL to take action. ‘If Trevor had cancer, there would’ve been a fundraiser. But with CTE, it’s like you’ve got leprosy.’

NRL Commission chairman Peter V’landys recently announced a record $744.9million in revenue and a $62million surplus. 

Sandra hopes some of that funding might be directed toward CTE care and research.

‘You grieve the love loss, the future, the plans,’ she said. ‘You’re alone. It’s a very lonely, lonely existence.’

Sandra Crow is determined that Trevor’s suffering will not be in vain. Through her pain, she is raising awareness, fighting for change, and hoping that one day, no family will endure what hers has.

For help in a crisis call 000. If you or anyone you know needs support, you can contact Lifeline 13 11 14, or Beyond Blue on 1300 224 636.