A seismic event happened in December 2014. Gethsemane Community - an organization in Sydney who offer disability services and support - had been home to four long-term residents with mental illness and other disabilities. On 18 December, just before dinner, we heard an ambulance siren. Robert, one of the Community residents, was due home - but we didn't make the connection until we got a call from Neuro ICU at Royal Prince Alfred Hospital. Robert had fallen on the street, hit his head on concrete and suffered severe inter-cranial bleeding.
Another Gethsemane resident Joanne*, who was also Robert’s fiancé, was in the middle of a manic episode and the Crisis Team was due. I couldn’t leave her unattended, and there was no one near to call on. I told the hospital I would be available by phone. They called back a number of times, asking me to be on-call while they decided if surgery was needed. I checked back at 12.30am and found they had decided not to operate that night.
I spent the next day at RPA, then was called in at 3.30am the following day. I had to risk leaving the Community unsupported until a more reasonable hour, finally calling a board member at 6.30am and asking if she could fill in for me. At 7.30am I called an agency nurse, who is a great support, asking if she could bring Joanne to the hospital to see Robert, and possibly say ‘goodbye’. I called the Anglican minister of the church they had attended. He visited Joanne and later brought her in again to the hospital.
Doctors had operated on Robert but had been unable to stop the bleeding. I left at 6pm, and as I did the doctors asked me to return the next day so they could turn off the ventilator. On the Sunday, I went to 9am Mass, then returned to RPA. The ventilator was turned off at midday.
I remained at the hospital until 6.30pm – right up till, feeling sick from exhaustion and with my parking area closing at 7pm, I had to leave. Robert died at 10.30pm. The Coroner was involved, and there was a backlog. On 27 December, I was asked to identify his body at the morgue, but anything further was delayed until January. Robert’s body was released the day after the Golden Jubilee celebrations, with my profession group finishing at North Sydney. Robert’s funeral service was conducted at All Souls’ Anglican Church in Petersham on 8 January, 2015. He was buried in one of our graves at Macquarie Park.
Leo*, another long-term resident, moved to aged care a few months prior. We had some short-term women residents, and in 2016, two men were referred by a support agency. Mick* only lasted six weeks and Alex* eventually decided to go back to live with his mother.
Another resident, Kerrie*, showed signs of major illness but the cause wasn’t clear. She had always been restless at night, but some nights she went to the toilet 16 times or more. A blood test revealed alarming levels of creatinine, which can cause kidney failure. Her GP did an urgent search for a urologist, and found one at St Vincent’s Hospital willing to see her at short notice. Exploratory surgery confirmed the earlier findings of an ultrasound. Kerrie had bladder cancer, which had spread to the uterus. She remained in hospital, while efforts were made to get theatre time for an eight-hour operation. This took place on 9 September, 2016.
Amazingly, given her severe emphysema, Kerrie survived. Her bladder and uterus were removed and she had an ileal conduit put in place. The problem was that she was not interested in learning to manage it. The stoma nurse, a delightful Japanese woman called Sunny, was at her wits’ end. An ACAT assessment labeled Kerrie as ‘high care’. Then Mark, the full time stoma nurse, returned from leave. Suddenly Kerrie announced, ‘I’ve already done it’, and then, quite loudly: ‘He’s not perving on me’.
As the nurse coordinator commented, ‘If only we’d known a male nurse was the catalyst, we’d have brought one in much sooner!’ Since Kerrie was now managing the stoma quite well, we brought her back to Gethsemane and asked our agency nurse to come twice a week to check on her.
A week before Kerrie left hospital, I was up early on 29 September and heard Joanne fall out of bed. She was lying on her side, breathing stertorously. I called an ambulance and followed their directions until medics arrived, which was very quickly. An ambulance had been passing by. Another ambulance came and four people carried Joanne out.
When I called the hospital she was already in Neuro ICU. It turned out that the blood vessels at the back of her brain were malformed. Arteries fed into veins and one gave way. Blood flowed into the cerebellum and ventricles. A drain was inserted to reduce pressure on the brain. Joanne remained in Neuro ICU until 10 October, when she was moved to a brain injury ward. At the time of writing, 15 October, she cannot move her arms and legs purposefully and still swallows with difficulty. When not drowsy, she is quite alert and can speak more clearly now. She knows she has suffered a brain injury. She misses the community and her cat Tommy, and grieves for her old life. Recovery will be a long process and the prognosis is unclear.
In the light of so much change, Gethsemane has decided to change tack slightly, and are now working with Jesuit Refugee Service to look at offering our two vacant rooms to some of their clients, if it’s deemed suitable.
There has been so much loss and death for our community – perhaps a resurrection lies ahead.
* Names have been changed.
