OUR LONG WEEKEND OF HELL
(30 March till 2nd April, 2013)
As Rob sleeps and lives in his electric wheelchair he also is cleaned in it. It is actually easier than when he is in a bed, less complicated, less painful, more practical and quicker. To put him in bed requires hoisting him in a sling that is traumatic and painful and very tiring for me. Then a lot of effort placing him back correctly in the wheelchair afterward.
His wheelchair's back opens up like he is in a dentist chair as seen in the above photo. Without this feature I'd not be able to care for him nor could he reposition himself throughout the day to alleviate some of the chronic hip pain. Though this enables me to clean him more effectively I still have to wrench his legs apart constantly fighting his leg's strong chronic contractures. This naturally has him yell out in pain. But there's no other appropriate option. Pain killers do not work and muscle relaxants compromise his ability to swallow even his own spit thus increasing his risk of choking.
Seeing and hearing Rob's pain puts employed carers off and before long they no longer can handle being around him. Nor are they willing to inflict the horrendous pain on Rob that is needed to clean him. Seeing the person I love most in such pain and suffering for over 19 years tears me apart. This past week I've had to take tranquilisers to dull my emotional pain and increase my pain killer consumption. I've myopathy and brittle bones. At any moment I can break a rib or any bone without warning or tear a muscle. This knowledge is stressful for both Rob and me. The guilt Rob has to live with everyday seeing me in pain has me also feel bad that I do not toss him in a institution like a piece of rubbish where he can die like he has requested. But in the same breath he says he is terrified - and rightly so - as he knows he will suffer a long painful death due to such facilities being unable to care for him appropriately. It's not dying that bothers him; it is how he would die. I would allow him his request. But not to die a death that even animals are not put through unless at the hands of sadists.
All this pain and suffering is and has been totally unnecessary for both of us. Without his legs he and I would be free of the emotional and physical pain and could get on with our lives. It seems no matter how hard we try to help ourselves it is to no avail as those who can help Rob won't and those who want to and could are not permitted. It all boils down to bureaucratic political medical red tape from the public health system controlled by a very small group of power hungry proud doctors mostly within the public health system. Red tape that is costing the Australian tax payer countless millions of dollars annually by inflicting inappropriate medical treatment/procedures on thousands in Australia. Resulting in emotional and psychological trauma, physical mutilation, preventable deaths and permanent disability to some leading to a life time of reliance on the welfare system. Some who could return to or take up full/part time work and become productive citizens of Australia's community.
Rob and I could be active citizens but instead are house bound and sinking deeper and deeper into poverty. Held to ransom by a powerful ruthless few who will do anything to keep their power over helpless and vulnerable individuals and those who try to help them. A powerful public medical machine that will crush anyone that gets in it's way; something one of our general practitioners said to me many years ago that has and continues to come true.
The couple of pictures above were taken today while changing his butt cushion and cleaning away the daily abundant dead stinky skin and plasma soaked nappies followed by a good application of Tiger Balm that is helping with the itch and pain and keeping infection at bay and promoting healing. His legs all the while having a life of their own.
It costs $2,500 daily to keep Rob in hospital doing nothing and dosed up with pain killers that are ineffective.
Costs $800 a day to condemn him to an institution where he will not get appropriate care as these places are understaffed and unqualified to care for those with severe cerebral palsy or the like. Care facilities that are in reality not available as they do not take in individuals with Rob's complex needs such as maintenance of his skin condition, psychological distress and severe depression, physical pain and difficulty in addressing his hygiene without causing trauma and elevated pain.
365 (days) x $2,500 (hospital care) = $912,500 annually.
365 (days) x $800 (inappropriate institutional care) = $292,000 annually.
Compared to $30,000 for a liberating operation that has already been confirmed to be the most reasonable solution by a world leading orthopaedic surgeon (and others who have had to try and care for Rob) that would address most of Rob's physical immobility issues and eliminate most of the difficulties faced by his carers dealing with his hygiene needs. The public systems only reluctance to remove his legs is a fear of posible phantom pain issues that Rob is fully aware of and prepared to risk. After all, could he really be in any worse a situation! And the fact that he could be is a moot point, when one considers that his present situation has him begging for a lethal injection as recorded in his hospital file.