About Me

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Born 1969 England. Arrived in Australia 1972. Single. No children. Partially disabled from severe osteoporosis, pituitary gland tumor (benign), myopathy and Ehlers-Danlos Syndrome (hypermobile in every joint). 18 yrs caring for my quadriplegic cerebral palsy friend, Rob. Ceramic artist www.sam-davies.blogspot.com

Saturday, January 26, 2013

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.

Monday, January 21, 2013

Hi, Visitors and Friends.

Went to visit Rob this morning. Things are not good for him. Though the broken skin he went into the hospital for has healed his lower right back is very soft like a marshmallow and a little off-colour. And just pressing lightly this area is excruciating for him. But for some reason his condition is still not seen as a medical one.

All that has been done for him is to ply him with more pain killers and other stuff. His pain levels are only low when he does not speak or move. Still no moves to transfer him to an appropriate hospital. Just plans to send him up to the mountains again till things are set up to return home or for him and me to agree that the best place for him is to rot in some institution.

Just before the Christmas holidays there were a couple of surgeons interested in helping Rob. But now everything has gone dead silent. No replies to emails or phone messages. Nothing.

I will probably bring him home on Thursday or Friday to take care of his back since it is obvious it is getting worse with nothing having been done to deal with the cause of the problem. Dead weight, atrophied, contracted useless legs. He has now spent two whole weeks laying on his left side. Tolerates for an hour some time on the right. How cruel. And now with his back apparently going soggy there is no way he can sit in his wheelchair. He could barely sit in it before going to the hospital the pressure of his back being forced against the back cushions due to the worsening twist in his hips was so intense.

But the consensus of a handful of doctors is that removing his legs will either kill him (which it won't and since Rob doesn't want to live does he really care now.) or give him more pain (which is a risk he is willing to take as a 40 yr old. Anyone would think he was a small child). But apparently it is preferable he spend the rest of his life potentially bed ridden, wearing nappies and doped up which will inevitably cut very short his life.

Feel free to contact our advocate Denise Roberts if there is anyone out there that can help. She can be contacted at:

Rob's skin 5th January, 2013. Note
how wrinkled and fragile.
Penrith Disabilities Resource Centre
Phone: (02) 47 322363
Email: pdrc@pdrc.org.au
Web: pdrc.org.au

Will post more on Wednesday.
Take care all.

Saturday, January 19, 2013

19th Dec -7th Jan, 2013
This is how I spent most of the 20 days back at home waiting for the holiday season to be over.
In my wheelchair plugged into the radio nearly 24/7 to help take my mind off the pain. With an odd break only managing to watch two-three DVD's and some Buffy the Vampire Slayer. And read a few books.

Interspersed with occasional sobbing when the thought of being stuck with my torturous, useless legs till the day I die hits me.
 While Sam spent most of the time in bed recharging his flat batteries.

Friday, January 18, 2013

Hospital Visit

Ah, this is me lying in a hospital bed since the 7th of January, 2013. I'm adjusting my radio that is clipped to my hospital tags. Taken yesterday. In case anyone's wondering about the noise in the background it's one of my fellow inmates with whom I share a room along with two others. She has dementia, poor lass. But the nurses are taking very good care of her. 
Sam adapted an ear bud from the radio by attaching it to a hair tie that is then placed over my right ear. Without this the earbud falls out easily. I wasn't allowed to listen without it before as it disturbed the other patients. Now I can plug in the earbud and drown out most noises without disturbing anyone. Can only wear the one bud as the other would dig in as I lay on my left ear since I'm mostly confined to spending all my time on my left side. Can only tolerate being on my right side for about an hour as hip pain from my ball and socket rubbing together is unbearable. On heavy pain killers again. I am leading such an exciting and fulfilling life.

Sam cheered me up a little by showing his latest find at our local markets.

And here's a beautiful bouquet ordered by a close friend, Di, from the Northern Territory. Thank you.

(Photos taken 1/01/2013)

 There's no need to hair wash under a shower...thankfully. I find showers very traumatic as it's very hard for me to sit up in shower chairs. So Sam lathers up my scalp with sorbolene with a little water while I sit in my wheelchair wrapped by a thick towel. After a few minutes any dead skin is easily dislodged with a vigorous sort of gentle rub over with Sam's nails. I may look physically tough but I am far from it. My particular cerebral palsy makes me highly touch sensitive. And soothing body massage is anything but soothing.

Using a thick moistened face washer all sorbolene and dead skin is removed with several rinses. Then the bad news...I'm also having a hair cut and shave.


Sam's mum, who used to be a professional hair dresser in London, England, taught him to cut hair when he first started caring for me 19 years ago. Which proved handy since hair clippers mostly don't work well, so it was the comb and scissor treatment as usual. I'm told - once again - that some day we will find a good clipper...for both our sakes.

This is the condition I'm generally found in five minutes after any vigorous physical interaction with water and flannel...asleep.

Saturday, January 12, 2013

Hi, all.
Sam's having difficulty uploading photos to my site and has yet to discover the problem.
As for me I'm in a bad situation at the moment. In hospital...again. Vicious cycle. I had just come home after an eight weeks stay only to be taken by ambulance back again after 20 days at home.
I was forced to come home originally as the holiday season was upon us and any doctors (from other hospitals) that wanted to help me couldn't as it's illegal to enter others' territory (red tape must always take precedence over the welfare of a patient it seems). So I was told if I stayed any longer I would have to give up my pension to the hospital, no exceptions. This would result in Sam and me loosing our place of residence as we share the rent and other bills. So I'm sent home on the 19th of December so we don't become homeless and Sam is already burnt out travelling an hour each way by train up to a hospital situated in the mountains (where I was transferred after four weeks) several times a week for the past four. And any home help could only be arranged after the 10th of January. And our main advocate would be away till the 14th of January and a disabilities organisation dealing with my case was also out of the picture till the 15th of January. We were mostly left high and dry and very alone. Sam and I tried to survive till the 14th of January but alas.
So on the 7th of this month, Sam reluctantly calls for an ambulance. There was absolutely no alternative as my lower back skin was breaking down. I could not go to bed as I'd be in too much pain, couldn't eat safely in bed and Sam did not have the energy to put me in and out of bed, up to or over, four times a day. Who on his or her own could? Pain killers weren't working. When I left hospital  originally I was on heavy doses of pain killers and other medications which resulted in dosing myself with at least six cups of coffee each day. Which in turn made me irritable and highly strung. So I stopped the medications as they were not helping much with the pain anyway and were making me very drowsy, thus needing to drink heaps of coffee. Another vicious cycle.
For some unknown reason when I presented at the hospital this time (though it was not unlike the first time to be honest) the doctors said my situation was not medical and they wanted me to go home. Really! I've open worsening pressure sores on my back and it is not a medical situation. Is it really any wonder why thousands die unnecessarily each year from pressure sores!! When Sam manages to upload pictures again he'll post a picture of the blood and plasma left on my wheelchair when the transferred me to the ambulance. Sam has not visited me yet. Seeing me in physical and emotional pain for over 19 years and the doctors with the power to do something about it not giving a damn has finally taken its toll. I spoke briefly to him a couple days ago and he came up to the hospital to drop off some books and small radio and has allowed for him to write this for me.
So, as Sam can not presently care for me, the hospital staffs' plan (which is nearly the same as the old one), is to dose me up on heavy pain killers again. Confine me to a bed in agony as I can not presently sit in my wheelchair. Hope I don't choke on or inhale my food and die from associated complications. Transfer me again to the hospital in the mountains where they are not trained in the least to care for someone with my complex and high needs, then transfer me to a care facility located not so conveniently within the  same mountains. A care facility apparently situated on a steep incline so Sam may or may not be able to visit me as he can only go places if he takes his electric mobility scooter which might not manage the incline. We escaped from Darwin where it is flat. Not like NSW where it is mountainous in many regions so Sam, some years ago, naturally ordered one for Darwin's terrain never realising he would have to permanently leave his home of 38 years. But since Sam is so exhausted now from my last hospital stay there's not much chance of me seeing him, he tells me, even if the landscape was as flat as a pan cake.
But all this is not going to happen, Sam assured me, as it is a waste of both our lives and time and our advocates will be back soon from their holidays so hopefully the doctors who wanted to help still do and will.
On the other side of the coin some doctors wish to see me institutionalised. Charming!!! They do not see the problem with being confined to a bed away from those I love (and my precious dogs) doped up with pain killers that will eventually cause organ damage and already cause complications. And who cares about loss of privacy not eating the foods you need and want. Nor the need to be very quiet all the time so as not to disturb fellow inmates who're literally only separated by a thin wall. Toe the line and don't rock the boat and don't let people know you can have a productive life if only those with the power would allow it. As I said to doctors some weeks ago, I do not mind going into permanent institutionalised care if it were necessary. But it is not necessary. I am hanging out to see doctors that really understand cerebral palsy. Not ones that presume to understand and think they know best for both the individual with cerebral palsy and his or her carer/s.
Please!!! I want to live. But not like this. The constant pain and fear. I'd prefer to be dead. I want to be dead. For those with iron stomachs feel free to click  "HERE" to see why. The pictures are graphic and show what happens when I go into care without Sam literally visiting me nearly every day to advise over my care. Again, I warn, they are "GRAPHIC".
Sam will post again in a few days time. All the best to all. Stay tuned.