Friday, March 25, 2011

Race of life

Sometimes life catches up with you. Sometimes it overtakes you and disappears off into the distance without you. It's a bit like this here at the moment.

Our son has been ill - difficult to tell what with, probably a tummy virus, but as he can't speak or communicate that well we can't really be sure. He's over the worst (I think) but it's left him pretty washed out and he's sleeping much of the time - not always that comfortably. At the same time we've had one care 'incident' we've had to complain about (complaining is hard, especially when it involves people you know well and you know you've got to work with afterwards) and our CQC initiated 'care deficit' has now escalated into a major problem with one care provider unable/unwilling to provide care in certain settings. (As this will limit what he can do we're going to have to set up an alternative - while picking up the extra care load ourselves. This involves waking watch overnights, so last week we did x3 back to back shifts on the run - no paid carer would be allowed to, but we're not paid, so that's OK.) My own parents are in poor health with dad just coming out of hospital and mum going in and on top of all this, I have to organize felling a large tree in their garden that's causing a neighbour dispute.

I've just re-read this - it's too long and whingeing. Actually, it isn't meant to be - it's just how things are for carers. Caring on it's own can be hard and stressful in it's own right, but non carers often forget that it's on top of the issues everyone else has anyway. Life goes on whatever you do, and impacts on you even if you ignore it.

Oh, by the way, his care review still isn't sorted by Social Services/NHS, the cuts are starting to hit and I'm supposed to be fighting them, and I've promised to give a talk next week to a group of about 50 people (on a completely non care, non disability topic I have a research interest in.)

I do have a life outside care and disability but sometimes I wish I didn't.


  1. It is a sad thing that those who care are out of sight and out of mind in those who have no experience of it; even those whose profession is to offer assistance (limited as it now is) do not truly understand - seeing just snapshots of a life.

    As you rightly say, every day life goes on too and can add to the pressures of caring.

    Hope your son continues to improve Ned and please be aware that I often think of you.

    Anna :o]

  2. Thanks, support appreciated. Apologies for whingeing.

  3. Glad your son is over the worst it is very difficult when they cant communicate.

  4. I got it wrong - not over worst yet. I think he's trying to tell us something, just can't work out what. Thanks.