Friday, 13 June 2014

Who cares for the Carer's?

You might be wondering why I have been a bit quiet for the last 6 months on the blogging front?

The truth is, I have been poorly as the loss of my dad finally hit me over the Christmas and New Year period. No one can predict their reaction to grief, everyone is different and so they should be! At the time of his passing I went into shock (well I presume that is what it was) no one has ever told me! All I know is that I couldn't speak or move I was totally numb sat on the floor leaning against his bed, knowing that the dad I had always loved was lying motionless next to me and there was nothing I could do about it.

I know I went to bed as I was exhausted and I remember my mum slept on the camp bed next to him for the remainder of the night, as she has previously done every night for the last two weeks numb with pain and grief herself.

I was awoken early by the night sitter as the funeral directors were here to collect dad. I remember being scared to go downstairs because I didn't want to see my dad lying motionless in the bed. However I knew I wanted to say goodbye and I desperately wanted to say to the funeral directors "please look after my dad as he is very special to us". I kissed my dad goodbye remembering how cold he felt and thinking why is he so cold it's only been a few hours?

It all seemed very quick, he was stretchered out and put into the back of the black van as my mum and I watched out of the window as he was driven off. It felt so final, I wanted to run after the van and say bring him back we are not ready for him to go yet, we are not ready to let go.

You then seem to go into an automatic pilot of  notifying everyone and funeral arranging and before you know it the funeral is over and you are back to work and life goes on. However for you and your loved ones how do you go on when your whole family dynamics has just changed for ever?

For me I ploughed myself into my work and campaigning for better dementia awareness and care via social media and joining Task Force groups and Experts by Experience Groups  at the Department of  Health and The Kings Fund. I thought I was doing the right thing however now I look back and wonder whether is was in fact putting off the inevitable in coming to terms with my dads loss. If I kept busy campaigning I wouldn't have time to think about it and they say time is a great healer!

So when I came crashing down at christmas I could longer hide behind my work or campaigning, in fact I couldn't do anything and had to stop completely. It has been a long six months where at times I didn't think I would ever see the light at the end of the tunnel again and like my dad's dementia care it too has felt a lonely road from a health care perspective. However I have had wonderful support from my twitter friends, colleagues, family and friends and have taken the time to review my work life balance and life in general!

For carers of those living with dementia or in fact anyone with a life limiting illness the journey does not stop once they have died, the care and support needed at this difficult time is paramount and I would like to take this opportunity to thanks Cruse Bereavement Charity who freely have provided counselling to me at what has been a difficult and challenging time in my life.

Who carers for the carers? They certainly do as do many other charitable organisations who save lives every day. I salute you and say thank you.


  1. Thank you for this wonderfully honest and very important blog, Sally. "How do you go on when your whole family dynamics has just changed for ever?" is such a powerful question. I think we often underestimate bereavement in this country - not quite the old 'stiff upper lip' standard (thank goodness!) but still often denying this depth of feeling.

    You are - and always will be - a fantastic campaigner. Sharing this recent episode of your story may even be the biggest contribution as it emphasises that carers need continued support after the death of a loved one in order to avoid the 'crash' that you sadly experienced.

    I was very sad that, having put so much passion and effort into such things as the Dementia Roundtable, writing a foreword for Dr Shibley Rahman's fab 'Living Well with Dementia' book and planning our Whose Shoes? Skills for Health workshop in Birmingham, that you were not able to enjoy the fruits by attending the actual events, particularly 'Shibs' book launch' living-well-with-dementia-the-launch-of-dr-shibley-rahmans-ground-breaking-book.

    Your absence and thinking of the contribution you had made certainly spurred me on to make the Whose Shoes? event as good as it could be. I know Shibley felt the same about you and Charmaine Hardy (source of the wonderful poppy on the book cover) missing his lovely, relaxed event too.

    SO glad to see you back blogging, Sally and hopefully with a new-found work-life balance with lessons for many of us.

    Gill x

  2. So understand when you right, I am walking the same path,and no one day it will hit me! The sadness at society is something you try with all your might to change afterwards,but the sadness for your loss, is hidden! Take care xxxx