The Spaz with Pizazz

Hi Everyone.

Sam here again writing on Robbie's behalf. He's still in hospital but hopefully will be out early this week.

"The doctors would be happy if Sam got run over by a bus wouldn't they?", was a question Robbie put to one of the doctors regularly seeing him. "It would be very convenient for you all, wouldn't it?", he added.

"We only have your best interests at heart", was the kind doctor's response. "And yes, it would be more convenient if Sam was not around, then you would have no choice where you were sent (to live)".

And people wonder why Robbie and I are concerned about his welfare if I could no longer care for him. It is also rather amusing when social workers, doctors and nurses can't see the problem with him being institutionalised or returned to care facilities that were not previously able to provide appropriate care. Interestingly, over the past week, I spoke with three people in the health system who agreed that if Robbie were institutionalised he would not live long. Because he has cerebral palsy he would not be cared for properly and be exposed to risk factors like pneumonia, bed sores and other nasties. Especially in his situation where he is now spending most of his life in bed and sometimes people are too lazy or busy to sit him up to make sure he does not inhale his food. Again, people with cerebral palsy often die not because of the cerebral palsy but because of the situation or the way they are being cared for. 

Robbie was also asked last week by a social worker if I was physically and/or verbally abusive towards him. Not that this is a first. After all, why would someone dedicate his or her life to caring for someone so severely handicapped who was not a relative. Unfortunately his answer was not what they had hoped for. If I had been abusive then they would fight tooth and nail to make sure he did not return home and then have free reign to institutionalise him for his own 'safety'. All this is so boring after 19 years of suspicion surrounding my intentions towards Robbie.

Before Robbie was hospitalised again (7-01-2013) we had both attempted to contact an appropriate hospital for full assessment and advice over his need to have his legs removed for accessibility/hygiene, mobility and freedom from pain. As did our advocate, Denise Roberts (Justice of the Peace). No response. So he was readmitted to the same inappropriate hospital since without permission from a specialist no ambulance was authorised to take him to the preferred hospital that had a team who works with cerebral palsied adults.

Also found out why Robbie's back was becoming soft as a marshmallow over the past couple of weeks as mentioned in a previous post. The doctors had directed the nurses to rub into his back twice daily steroid cream to treat psoriasis!! Well, to start, he did not go to hospital for psoriasis on the lower back which is easily treated at home with sodium bicarbonate solution. He went in because his skin was breaking down and bleeding due to the heavy pressure of his hip pressing on the back of his wheelchair due to the twist in his hips caused by his leg contractures. Fortunately, the pressure care nurse immediately reported the steroid cream issue. Not that it stopped nurses the next day trying to rub the cream on his face. Fortunately Robbie protested, a nurse investigated and no further word was said about the offending cream. His back tissue was beginning to break down due to the steroid overuse and was caught just in time. Yes, so many die unnecessarily each year!!

With that happy thought I'll finish here. All going well Robbie will be home and we'll post a video of him doing something. Stay tuned.
Sam