Thursday, July 1, 2010

Seeing the light

It's a strange thing letting go. We've been building up my sons care package gradually for about 8 years. Prior to that we did almost all his care 24/7 ourselves (not necessarily out of choice but because he was felt to be too difficult to cope with by the places we got referred to.) Before that all we really got was a few days a year respite from the local childrens hospice. So we went into partnership with a couple of charitable provider organisations and started the 'shared care' with one or two days a week. They were good and we gradually built it up until this year he's only with us one or two days a week. It's been long, hard and involved a fair bit of friction at times (especially with the PCT and Social Services) now we trust them and I think they trust us.

The real payoff here is that we can risk dying now. Getting ill hadn't really been an option before. And I don't want my daughter to feel she has to take over if anything happens to us - the damage it's done already is more than enough. (S - if you read this, we know you could do it, we just don't want you to have to. Your life is just as important as his.)

We've recently made the transition to not doing the nights shifts - even when he's at home, one of the nursing team now take on his night care and we camp out in the spare bedroom. This has actually made much more of a difference than we expected and changed things in what for us was a fairly surprising way.

Up to recently we had him at home with us for a continuous row of shifts for about two days and nights at a time (plus of course any 'contingency'). What this meant was that, even alternating the waking watch night, we were so tired that we didn't have the energy to do much with him during the day apart from his care, and we spent all the time in between just catching up on sleep until his next visit.

Now, we're awake and alert when he's with us and spending the time in between not just recovering - and everybody's quality of life is better. We have the energy to organise and do things with him we never considered before, so his time at home is much more interesting. We've found ourselves taking him out with the nurses in between times as well to do fun things - and it's good.

We're even managing to take a few days out to visit my daughter. I'm finding it difficult to remember what it felt like even a few years ago when we were locked into full time continuous care and staying awake was an effort. The light at the end of the tunnel looks good - I just hope the spending cuts don't turn it into another oncoming train.


  1. I am so pleased you are getting your life back and in doing so, can give a better quality of care to your son.

    I believe that professionals cannot realise or comprehend the position of full time carers and the stressors placed on them, unless they are placed in the same position themselves.

    They can walk away from a brief visit and be totally unaware of living a life as a twenty-four hour carer.

    You and your family have come through it with distinction - and you should be proud of yourselves!

    You have never given up on the needs of your son - but people fail to realise that you have needs too!


    Anna G

  2. Comment appreciated. It's really just that you play the hand you're dealt. For family most people would do what was needed as well. Objective of the blog is to get carers more visible, partly for their benefit and partly to help get the services the people we care for need.
    Hope you find it of interest.
    Ned ludd, carer.

  3. Hi Ned

    I've read your blog with interest, having linked to it from a carespace debate on personalisation. I'm really pleased to hear that things are going (relatively) well at the moment.

    I'm based at the University of London and writing a book on personalisation. I'm trying to do justice to the ambiguity of an agenda which holds out the offer of empowerment but seems fraught with difficulty in practice. Would you have time sometime to email me your thoughts on what the barriers are to personalisation delivering on its promise to make people's lives better, from your own experience: my email is

    No worries at all if you don't have time!

    Catherine Needham