Sunday, 16 January 2011

Page 16 My Wonderful Carer

Now there is a reason why all this was such a nightmare, which I didn’t write before, because Al is a very private man.

Alan is one of those mildly Autistic that were never diagnosed like they are today, well if you're lucky. He's also Dyslexic verbally and in the written word, doesn’t spell or communicate well.  This wasn’t a problem before the accident as I used to ‘translate’ or explain to Al, what people meant and what they were saying when they were talking to us.  I spelt things for him, kinda like his very own walking talking ‘spellchecker’.  I remember spending a fortune on one of the first calculator sized handheld ‘spellcheckers’ for him to put in his toolbox for work, so he could fill in his worksheets and leave notes for the next shift. 

It was just the way we ‘worked’ as a couple.  Al is highly intelligent & a brilliant engineer!  I dealt with all the money, phonecalls, letters and people, house, cooking, cleaning, mortgage, gardening, decorating and gardening side of things.

Except I couldn’t anymore, so we were in trouble.  You see, this is what, along with my TBI and being honest, allowed Karen Thompson of Lester Aldridge, Dr Burns and Dr Nick Moffat, Poole NHS Trust and everyone else to get away with what they did.   
Al is far too nice, trusting and caring of a person to see their deception and I? Well I was just a little bit broken now. 
Only some kind of monster would do this to people they'd permanently injured, a vulnerable accident & negligence victim and carer.  
I liken them to the thieves that attacked the foreign visitor on his bike in London, then whilst pretending to help him, mugged him. Except that was a fleeting injury, these people were robbing me of my the rest of life.  Deliberately causing suffering & pain, every minute of every day for the rest of my life & Al's.

Over the next few days, Alan got used to sleeping on a mattress at the bottom of our bed.

He didn’t sleep very well as I was constantly being startled awake.  My breathing would stop and some survival sense would startle me awake with a feeling of terror. 

I’ve found out it's called Central Apnea, a feature of Syrinx, which causes my breathing to just stop.
I now have a baby monitor which regularly wakes my wonderful carer, Al.

I remember telling Dr Burns about it, and getting that all too familiar silence.

I also told Dr Moffat, repeatedly.  He’d just suggest It was bad dreams or PTSD and that with a TBI I couldn’t remember them.  

Dr Moffat and Dr Burns both knew it was due to Syrinx.

I couldn’t move when I was sleeping, none of that rolling over or adjusting your position.  I slept in exactly the same position for month upon month.  I had to have my head propped up and slightly forward so that I could breathe, if it went back to the position you would normally sleep, I couldn’t breathe.  
I had to keep turning my head from side to side to stop the pressure building up in my head. 

To this day I have never been able to sleep on my tummy as I did before the accident.  I have to be propped up with pillows to lay on my side, which even then is uncomfortable.

I digress.

Alan would get me up in the mornings after removing the pillows and blankets, then moving me very carefully because of my neck and back Injuries. He would do all this for me, and set the alarm clock for painkillers, which had to be taken with food, which meant Tea & Toast beforehand, late at night and very early in the morning. 

He isn’t a big bloke, and if you can imagine how do you move someone with as many injuries as mine, on your own?  Especially someone with shattered hands?  You can’t hold hands?

Think about it, broken wrist and elbow too?  And as for the TBI, severe spinal cord injury, the broken neck, back and deviated septum and broken coccyx? 
All those severe Injuries we didn’t even know about?

Now I look back, it was crazy sending me home, the nurses were right.  Unfortunately they are not in charge.  A Consultant or Registrar is, and how often do they see the patient.  Twice a week if you’re lucky and for about a minute.  Then there is the Hospital Admin., pushing for empty beds.  
The patient doesn’t stand a chance. Especially when the hospital has been negligent, and their only thought is to cover up that negligence.  They don't care whether the patient lives or dies, they only care about 'possible' law suits, image & Dr's only care about themselves & future earning potential.  No one cares about the patient once they've been negligently treated.

Anyway, the GP surgery arranged for a District Nurse to come round, to  
Continue with the Claxane injections. I was actually told it was Heparin or Warfarin, I can’t remember which.  She would do McConnell strapping on my knee to help keep it stable so that I could stand.  

Alan was washing me, which was hilarious, as he wouldn’t dry me properly.  He was so frightened of hurting me, he’d leave the bits around my nose and eyes wet, or between my toes.  I could only really say ‘yes’ or ‘no’ and barely understood what he or anyone else was saying.  So I’d just be sat there trying to tell him I was still wet and could he dry me please, but all I could say was ‘no!  Poor little lamb would sit there on the side of the bath, while I sat on the loo with the seat down, with this dosey woman crying ‘No’ at him.  While he was saying ‘what?’.

It got worse with the socks.  Imagine someone putting your socks on for you, which are shaped and have to be straight or they are uncomfortable right?  Well that was a nightmare, same thing as with the being dried. ‘No!’  

The shoes, were even worse, imagine the pain in my feet, then by the time the frustration of the washing and drying and putting on of socks is over, it’s the turn of the shoes.  
When someone else is doing your laces up, just a bit too tight, add painful feet and lack of ability to do anything to help or even communicate.  Nightmare.  Much more, ‘Noo!!’ 
So this is how we went on for a few days.

Then I had to go back to hospital to see Dr Jowett, who I hadn't seen before, who was totally dismissive of the fact Al was still asking for me to be seen by a Neurologist.  He didn't even look up from his paperwork during the couple of minutes we were given with him. He just told me I would be coming back in a few weeks to have the third operation on my hands. 

This time it would be to remove all the ‘k’ wires and Fixator and see if anything needed plastering. So we walked out of that meeting in the usual state of ‘what just happened?’.

We went on for a couple more weeks, with Alan struggling to look after me, toilet me, scratch my nose if I needed it even! Ha. Ever thought about blindness from stabbing yourself in the eye with a Fixator while scratching an itchy nose.  Not Good!  

Ah, joking aside.  Alan borrowed his mum’s car and drove me up to Stonehenge, I wanted to put my hands on the stones, to see if it would help them get better.  I know I know, it is just the ole hippy in me.  I was willing to try it, if it might help me get better.  Open minded about these things me! 

So I get thirsty and we go into a pub on the way, and Alan is stood there at the bar asking where there is a comfy chair for me, as I cannot sit on anything resembling a hard chair.  Little did we know that I also had a badly broken coccyx.  I couldn’t stand on my own either so it was sit me down quick or watch me fall down.  I was getting such looks of repulsion and being stared at and catching people doing it, who then quickly looked away. 

The funniest bit, Alan being given my orange juice and having to ask for a straw!
I mean come on! 

So we get to Stonehenge and they have the stones roped off.  The last time we went was to a pop festival, and everyone was getting naked!

So he took me to the Avebury stone circle.  I felt better.  We came home.  
I know! I’m daft as a brush! 

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