12th February 2012
Horses dark, stand firm heads bowed in fields white, brilliant pure white, snow has fallen thick. Three kestrels I see. Each sitting, poised on tip of tree, on lamppost, on pole. They sit, they gather themselves, reflect, and I seem to catch them waiting, gathering themselves, scoping the landscape for the best time to swoop and score their prey.
It’s 9.30, just before I leave to spend the day with you, kids are ready, just about. The phone rings. I am speechless at the other end as the PCT have changed their minds it seems, and the person on the other end of the phone lets me know they have decided they won’t be funding Alex coming home for the weekends. They will fund one in 6.
The phone almost falls from my hands, I certainly cannot speak. Finally having thought I could just about get by, just about tolerate the torture of leaving you in a nursing home if I could at least have you home from Friday through Monday. That way it would be days you were there.
I don’t want to shoot the messenger, although the way I feel at that moment in time it’s probably a good job I’m no where near the people who make the decisions in the PCT, an even better job I am no where near the Government, responsible for torturing people.
Alex, you are effectively a Prisoner of War. Whilst I fight everyone on the outside to get you home, who have no money in their budgets, no house to house us, you are trapped and defenceless and deteriorating in a nursing home prison. (I must add they are wonderful in the Care Home, but Alex, you need to be at home).
This is modern day torture. And I am standing up and I am bloody well fighting this bigger and harder and better than I have fought before.
I am coming to get the people I need to get, I am going to shout about this till this failing system is addressed.
It costs a small fortune to keep Alex in the nursing home- I do not even want him there!! That’s the irony. They are (informing me in the email of last week from the council) deducting huge amounts (over a third) of my weekly benefits unless I have Alex home. I cannot get him home, there is no house. And yet the other organisation, part of the system involved, the NHS, are paying a fortune keeping Alex where I don’t want him- how is this right?? How does that work?
They need their heads banging together. The government is haemorrhaging money from the system in cases like mine and reclaiming it by taking it off the rest of the people who need it.
Step out of your chauffeur driven car Mr Cameron, leave your restaurant meal on expenses, come out of your enormous houses and live a day in my life, I dare you.
What a silly statement to make to a coward who hides behind ‘capping’ benefits and sweeping the nation with bedroom taxes and other such nonsensical initiatives when staring him in the face is cases like mine. Shift the money the NHS are forking out to keep Alex in the care home, over to the council to enable me to rent somewhere, I will make him progress leaps and bounds, and guess what? That’ll be much more cost effective for you too in the future as the better the input now, the more chance Alex has of regaining some independence and will be less dependent on the system.
Oooooo I am fuming. FUMING!
My tears stung this morning, my baby, my angel, you cannot come home now. I'd like someone else to break it to Alex and my heartbroken kids that want their daddy home actually, because my heart cannot get any more broken than it already is.
I love you Alex, sit still, do not worry, I am fighting this one, I am looking after you all.