Rey and Mara

‘The cleanliness is not there. It's a dirty, horrible, horrible facility.’

Rey was diagnosed with a brain tumour about 20 years ago. As a result, he is non-verbal, has memory loss and is physically impaired.

Initially, Rey’s wife Mara cared for him at home. After about seven years, his behaviour changed. Mara told the Royal Commission he would wake in the night and ‘try to strangle [her] with his good arm’. If their young daughter came near him he would ‘hurt’ her.

Mara spoke to her GP who suggested ‘it’s time that you think about doing something’. But there were no facilities in the area. ‘I needed him near me, and I needed him near his daughters … and family.’ Rey moved into the only place available – an aged care nursing home. In his early 40s, he was the youngest resident. ‘That was the hardest decision and I regret it,’ Mara said.

Over time, the standard of care deteriorated. Mara said Rey was often in clothing that wasn’t his, dishevelled and dirty. When he rang the buzzer for assistance, he would be left waiting for long periods of time.

Some years ago, Mara and Rey were waiting to meet with an organisation to arrange some outings for Rey. Rey needed assistance and pressed his buzzer a number of times. It took 40 minutes for a staff member to arrive.

By then, Rey had defecated and was beside himself. Mara was so distressed she asked to speak to the manager. The manager told Mara that Rey ‘buzzes all the time, he’s annoying’. Mara reminded the manager Rey was continent and knows when he needs the toilet. She demanded staff respond immediately.

After this, the manager made an application to have Mara removed as Rey’s guardian. Mara had to go to the police station to read the manager’s report supporting the application. Mara said it was full of lies. The police officer quietly said to Mara to ‘gather what you can’ and ‘this lady is notorious for these’. Mara asked everyone who knew them to provide statements to resist the application. She was successful in retaining guardianship of Rey.

Mara said the current manager is kind and knows ‘the right words to say’ but nothing has changed.

Rey is unclean, often sitting in soiled pads and wearing dirty clothing. Mara said the medical care is ‘rubbish’ and the agency nurse who comes to the home is ‘incompetent’.

Not long ago, Mara noticed a number of bed sores and welts on Rey’s body. The nurse told her it was a rash and Mara had to fight to get him to hospital. Doctors said the welts were caused by bed bug bites. The home told Mara they’d washed the sling and changed his bed linen. Mara questions why that wasn’t done daily.

On one occasion Mara arrived to visit Rey and found staff ‘saying goodbye’ to him. The nurse, without any authority, had stopped Rey’s food and water and had implemented end-of-life care.

Mara immediately called her GP and got Ray to hospital. Rey had sepsis due to a bed sore. Doctors treated him and kept him in hospital as long as they could.

During the COVID-19 lockdowns, Mara ‘couldn’t get in’ to visit Rey. The home ignored a sore on Rey’s leg and one on his shoulder. It wasn’t until he was again hospitalised because of sepsis and dehydration that doctors examined the sores. They ordered tests and a body scan. The sores were skin cancers and the cancer had spread throughout Rey’s body.

Mara is ‘devastated’ and is trying to get Rey out of the home.

‘He's either got to go to the hospital or is coming home to me to die … I can't have him in there … I can't because they're incompetent, they're dirty, and I can't do it.’