Saturday, 16 February 2013

Dear Alex, And Tonight...

15th February 2013



Dear Alex,

Fridge light illuminates the kitchen, as I swallow a mouthful of milk, I am careful, I am quiet. Your carer sits in the lounge watching you, you are here, in the house, asleep under the same roof as me and your children.

I wander by your bed, I cannot help but pause, a long while passes as the smile that creeps across my face, spreads inside and out, giving me rest, feeding peace to my soul tonight. Watching your chest heave with sleep and drinking in the family home and love. And oh how I love you Alex, and if only I could do more.

The funds we (makingwavesforalex.co.uk) have raised have funded this weekend, but it's not sustainable, not a long term solution.

But I think not of this tonight. Too content with you here for a few days, not a rushed one night stay, but 3 whole nights and 4 whole days! And my word how I am blessed, privileged and blessed to be able to be here to be there for you and for our kids.

I walk slowly up the stairs, you asked me to stay with you tonight, 'why was I going to bed upstairs?' you asked. When I reassure you I'd wait with you till you fell asleep you turn your head 'ok' you sigh smiling.

And tonight, tonight, I do not feel the guilt or terror or desperation knowing I am leaving you in a care home. You are here, you are still mine, our love still runs so so deep.

And tonight my angel, tonight, you and I sleep under the same roof, the same house, the same street under the same stars and I love that I am with you tonight, all night.

See you when you wake,


Me xxxxxxx

Dear Alex, 100 Reasons video


Wednesday, 13 February 2013

#GetAlexHome

This is a campaign to get Alex home.

For those who have been following my journey, you all know why Alex belongs at home, I am sure you saw the pictures of Alex's beaming face at the Winter Wonderland ball we just held for him.

What you might not know is that research shows the first 18 months to 2 years after a brain injury are the most critical time scale wise for long term recovery.

At the Care home:

Alex is got up in the morning by people he may not remember (due to severe brain damage which means Alex no longer has the capacity to form short term memory), in a place he is not sure why he is there, unable to communicate effectively his needs, and he is blind, so cannot even see where he is or what is being done to him. He is fed his breakfast, then 3 or 4 times a week he has an hour's physio. Then in his bedroom he sits, head drooping in his wheelchair, unable to see. Lunch comes at 12.30 which he is fed, then left again in his wheelchair all afternoon until 5.30 when he has dinner still in his room. Then at 7pm he is put to bed. Until the same routine begins again the next day.

Although the carers and the staff and the centre are wonderful, this is not what is best for my husband and it costs the tax payer roughly £96,000 per year to keep him shut away and institutionalised.

The Goverment are unable to come up with a solution.

Here are my proposals,

1) Adapt the current house I am in, the landlady is OK with this, I am starting big time investigations.

The problems may arise when I ask for funding to adapt it, it may not be possible with the amount I could or could not qualify for. And it could takes months, if not a year.

2) Best solution, DIY SOS get wind of it, want to help and blitz the place, Alex is home soon. BUT obvious problems, I do not own the house, apparently I have to for DIY SOS purposes.

3) I rent somewhere else. There's nowhere appropriate and nowhere within budget for our family requirements.

4) The council buy this property from the Landlady. They tell me they have no money in their budget for this. COME ON!! Give me a break, somewhere...!

All I know is that I am running out of time, a small fortune is being spent on keeping Alex in the Care Home, the council have no money in their budget to acquire another property, they have no houses here. IT MAKES NO SENSE!

My case highlights a failing system, a system failing its people, poorly run, badly thought out and unsustainable if they let money be paid like this to keep Alex somewhere I don't want him, when they could somehow find a solution and get him home.



Alex needs to be with his family,

#GetAlexHome

Please tweet the bejeezas out of this, share, as much as you can. They have met me, but not my army, and my army is not as tired as me, and is much better looking and has already been drinking gin...

GO GIRLS, and GUYS!

THANK YOU and please watch this space.

Tuesday, 12 February 2013

Dear Alex, Prisoner of War.






12th February 2012

Dear Alex,

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.


Me xxxxxxxxxxxx


Monday, 11 February 2013

Dear Alex, Home...







10th February2013

Dear Alex,

Snow swirls, pain sears,tears stream, I have just left your side, left you at the Care Home. I, unable to leave for ages in the car outside, sit watching your window, hopingto catch a glimpse of the angel I asked God to send to look after you until I return in the morning. The second I pulled up to the Care Home, you knew. Your legs start to shake, you reach for me, and you just start to cry,

‘I want to stay with you…please’

Only we both know you can't. I don’t know if you know this is not by choice that you are there. I don’t know if you are maybe thinking it’s down to me, and washes of guilt and indescribable internal pain course. My heart broke, I felt it.

Monty and Esmie were in the car with me, and Monty who rarely interacts with you, rarely touches you or cuddles you, let alone looks at you, climbed into the front of the car as we sobbed together, he climbed on your lap, arms round his daddy’s neck, and we three cuddle tight and long and just cry, cry our broken hearts and at how different times are now. Unspoken understanding heard between us.

Then Monty makes a comment to make us laugh, ‘eeeeuuugh there’s so much snot right now!’

Only your smile is brief and as I have to walk away. Leaving you in your dimly lit room, with a Carer to give you your dinner. Your face switches off, it’s like you’ve gone, I walk out tears dripping into my mouth.
I don’t know how to do this any more without a house. I just have to get you home, everyone who sees you at home or sees you with me can see how you need to be at home.

I’m going full throttle this week, no stone will I leave unturned. I’m getting you home…


Me xxxxxxxxxxx

Sunday, 10 February 2013

The Winter Wonderland Ball...And this is how it went

I am overwhelmed, staggered by the night, how it all went and how many people turned up! The generosity of everyone raised more than 10k for Alex!! I have just started blubbing again writing that figure, I am so amazed by the support, the dedication of those who organised it with (well, more like for!) me.

Alex's further Rehab is So vital, and that 10k will help in huge ways to ensure he gets therapies he needs.

I literally have no words for how incredible the night was, it was hugely emtional for so many reasons.

There's a tour of the night, some of my favourite pictures.

Alex and I can never thank you enough- we hope his, my smile, and the fact we got to dance together, the sheer delight on our faces is a visual 'Thank you ' to you all...