by Tash Sharpe
Thirteen years later and I can still remember the very early morning phone call from Mum.
“Tash, there has been an accident, Brian is in a bad way. Paul [our older brother] is on his way over…[crying from Mum]…the Navy will call us back when Paul arrives.
“It’s not good Tash, it sounds like he may die…[crying from Mum]”.
From that one call, Brian and our family changed for ever.
I got off the phone and was numb with disbelief. I had no idea what was going on, and the wait for Mum to call back felt like forever. I felt a million miles away and helpless as I was living in Brisbane and the rest of the family were in Canberra.
The next call was from my brother Paul. He explained the ship had docked in Goa, they had a night off and went in to town to have a few drinks, and something had gone horribly wrong and that the Navy needed one of us to fly to India to be with Brian. My brother flew over and he and the Navy were going to get him home.
The next time I saw my brother was in ICU at the Sydney North Shore Hospital.
We met with the head of neurosurgery and a heap of Navy officials. We were informed that Brian had suffered a number of strokes and heart attacks and that he had sustained a very bad acquired brain injury. We were told that the damage was extensive, and he would be requiring full time care for a very long time, if not forever.
We were then taken in to ICU, he had tubes everywhere and was on a life support machine. I can remember running out and being physically sick. I could not understand what was going on. I had not seen anything like this in my life.
My brother, who I had helped pack before he went overseas only 18 months earlier, was now in ICU with the possibility of not making it.
My brother was having a night out like any young 24-year-old. He bought a cigar at the bar, laced with ‘China White’ – a mix of illicit drugs, apparently commonly used in Goa by criminals to rob tourists. On top of the alcohol, it had a devastating effect.
Brian was an extremely fit sailor, so he began the fight of his life. All of his other organs were fit and healthy, but once the brain is damaged, it’s a very long recovery.
Brian was in ICU for quite some time before being transferred to North Shore Rehabilitation.
Family and friends constantly travelled from Canberra and Brisbane to help Brian in the early days. Without any places in Sydney or Canberra, Brian was transferred to Brisbane for long-term rehabilitation. Brian was then medically discharged from the Navy and unfortunately, the rehabilitation did not last for long. From then, he only received maintenance rehabilitation when the centre had a therapist.
The only possibility for my brother was aged care, which really was not an option for us. He became lost in the health care system, spending the next 12 years residing in a hospital room in a rehab centre that did not have much funding.
He ate hospital food day-in day-out and most of the time was just put in front of a TV. I would find him slumped over in his chair watching children’s TV shows not appropriate for a grown man.
He was bathed, sometimes in the corridor, put to bed by 4pm each afternoon, where he would lie alone, until at least 7.30am the next morning. He lived this life for 12 years.
Two of my children have only known my brother to live in a hospital room. This only became apparent to me when, in 2015, we qualified for a Youngcare grant and I told the rest of the family that Brian was going to have his own home.
My eight-year-old daughter said: “What do you mean, isn’t this hospital Uncle Brian’s home?”
Brian never went home to Canberra and hasn’t seen many of his friends or extended family. He lost so much on that one night that at times, as his sister, I feel guilty for still having.
Brian requires 24-hour care and sometimes two carers to assist him with daily care needs. He requires assistance to eat and drink, but he has a wicked sense of humour and can communicate in his own way.
His facial expressions tell a thousand words.
But his life has improved massively thanks to the Youngcare team and the Home Soon Grant. His life has turned around — he hasn’t stopped smiling and is having so much fun.
He is now back living in the community, he has his own one bedroom unit in a fantastic group home with three fabulous flat mates. He has his own bathroom (basic dignity when it comes to showering or going to the toilet).
He now gets to choose what he wants to eat, what he wants to do each day, what he wants to watch and listen to, when he gets out of bed or goes to bed. He has now started hydrotherapy which for more than 10 years we were told he could not do.
He has gone swimming in the ocean for the first time since his accident. He started attending Mates4Mates events. He goes shopping and to the movies. He has gone to rock concerts with his nephew, he has even had parties at his new home.
He is living his life just like any other young man, but with the 24-hour support he requires.
Our family cannot thank the team at Youngcare enough for what they have given Brian and his future. Although most people believe that something like this would never happen to them, believe me, your life can change in the blink of an eye, and unfortunately, it affects all your family and close friends.
The community needs more and more of the homes that Youngcare provide, but they do come at a cost. That is where we need not only the general community but big corporate companies and the government to help keep Youngcare’s vision a reality: to help get some of the 7,000 young Aussies with high care needs out of aged care.
Our mother recently passed away and she was at ease knowing that her son was in the Youngcare Share House in Wooloowin in Brisbane. She was known as the grandma of the Wooloowin Share House and was so happy the day Brian moved in.
Having watched her son spend the last 12 years in a hospital room, to now finally be living in a real home made her very comfortable in her last few days.
To give young Aussies with high care needs the chance to live a life with choice, independence and dignity, support the Youngcare Christmas Appeal and go to: www.youngcare.com.au/donate/christmas