From old diaries read after the wardrobe clean out. More to come.
Almost in another lifetime, R was a carer of disabled children and youth. Some were severely disabled, others not as extreme. Some were disabled from their mother's taking the evil Thalidomide for morning sickness during pregnancy. Let me tell you about a few, and one very special one and the most awful way he died.
I came to know them, as staff would often take them home for a weekend or overnight to break the monotony of their lives, the children that is, not the staff. It was generous of staff to do so and as far as I know, there weren't any problems. Three staff and two quite disabled lasses, who could at least walk in a fashion, came to our house for a barbeque. As far as I can recall, both lasses, Freya and Danielle, died not too long later.
Totally helpless were two lads, Aiden and Damien. Aiden was about eight years old but the size of a two year old and totally dependant on staff for him staying alive. I think at times he maybe tried to use his eyes to communicate but was generally unresponsive. We used to lie him in a beanbag in the lounge room. He had fine blond hair and an angelic face. His mother used to see him once a week, but he never showed any sign of recognition. It was not too long after R left that job that he died of natural causes.
Damien stole our hearts. He was no more than a metre tall, totally helpless, with a freckled face and curly black locks of hair. He knew more of what was happening around him than Aiden, although he was completely unable to move or communicate. He would readily smile, and at times giggle. He was about fourteen when I came to know him, when R first brought him home for a sleepover.
He was a mature teenager trapped in a tiny body with very little brain function. Or course I did not participate in the messy part of their care, of which there was much. R took it all in his stride. Once we were taking Damien out somewhere, perhaps a walk in the park, where he would be in a lightweight wheelchair. I was drumming my fingers in the car, ready to go. What is taking so long? I went back inside and R said, Damien's got an erection and I can't get his nappy on.
Damien was not a victim of Thalidomide. He we deprived of oxygen when he and his twin were born, by being strangled by the umbilical cord. His parents were nice people. They looked after Damien when he was very young. On a family outing to a large water storage dam, they looked after Damien so well, they failed to notice his normal twin brother toddler walking towards the dam waters. Damien's twin brother drowned.
Damien also had chronic chest problems and had to always be put to sleep on his side, otherwise he we suffocate or drown in his own fluids.
At the age of 17 Damien went into a major hospital for a hip operation to make him more comfortable. Staff informed the hospital that he must be always left on his side to sleep. A note was also slapped on his bed. I don't know if it was before the operation or after, but what did the hospital staff do? Left him to sleep on his back and he choked or drowned in his own fluid and died. General nurses and doctors are not clued up on care for the severely disabled but the care for him had been reinforced. This was all so long ago. If it happened now, there would be hell to pay and there should have been back then. To say R was distressed by the unnecessary premature death of Damien is to understate.