Monday, February 12, 2018

In memory of Aiden, Damien, Danielle and Freya.

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.

23 comments:

  1. Replies
    1. Jayne, you may know that there is now a public advocate for the disabled. There wasn't back then. It would be interesting to look at the hospital records.

      Delete
  2. My mother used to work in a similar institution, I remember her bringing home similar disabled patients for weekend stays at various times. We tried to make it as fun as possible for them.

    ReplyDelete
    Replies
    1. Allan, who knows how much each could understand, but I am sure at least some of them understood enough to enjoy what was done for them.

      Delete
  3. Yes I remember Thalidomide very well :( Nobody meant any harm, but what untold tragedy it brought on.

    ReplyDelete
    Replies
    1. Hels, as I recall, while no one meant harm, it quickly became apparent that harm was been caused and the company did not react fast enough.

      Delete
  4. That is such a sad story and yes, if that happened today they way he died there would be hell to pay.
    A special person is R :)

    ReplyDelete
    Replies
    1. Margaret, I would like to thing there would be hell to pay now. R is very special in what he did work wise and out of hours, but unfortunately he used up all his patience at work and had none left for me.

      Delete
  5. How very, very sad...tragic.

    It makes you/me/others wake up and realise how lucky we are...how lucky we have it...or it should do.

    ReplyDelete
    Replies
    1. Lee, when I see parents in the street with disabled children, especially extremely, although rarely nowadays, disabled children, I know what they are going through. They will do their best for quality of offspring's short life.

      Delete
  6. The note slapped onto his bed should have also been slapped onto his medical chart at the end of the bed and probably onto Damien himself just for good measure. It's unthinkable that nobody read it. Such a sad post. I'm glad these days investigations happen when a patient dies unexpectedly.

    ReplyDelete
    Replies
    1. River, I am sure it was all detailed in his medical notes and on his chart. That is the way things are and were done. It would be an interesting thing to research by someone skilled in that area. I only tell one side of story.

      Delete
  7. It's so sad to hear about this. A reminder that we need champions for those who are unable to speak up for themselves. I'm so thankful that you make these posts. Hugs...RO

    ReplyDelete
    Replies
    1. RO, while I know there are now publicly paid people to advocate for the rights of disabled individuals, even now, I wonder if today, that justice would be done.

      Delete
  8. Andrew, I responded to your response to my first response in your previous post. :)

    ReplyDelete
  9. Heartbreaking Andrew. Your R is a very special man and you also for all the support you gave/give him xox

    ReplyDelete
    Replies
    1. Grace, yes, especially me and my support. :-)

      Delete
  10. I admire people who willingly look after disabled people, as it's a very hard job.
    So sad that Damien's parents lost an able child and later their disabled son too.

    ReplyDelete
    Replies
    1. Sami, yes, not everyone can do that job and generally the people I came to know who did the job were all very caring.

      Delete
  11. Very sad memories ! It's horrible for parents to have such children, as long as they are alive it's OK, but afterwards ???

    ReplyDelete
    Replies
    1. Gattina, the more they are cared for at home, the worse time they will have when their parents die. They will be cared for by the state, mostly well but sometimes not. It is better that they are prepared in advance for the change.

      Delete