Friday, December 23, 2011

Nothing finishes

I'd no idea how much there was to do when you lose someone. We had an 'end of life plan' - which my son totally ignored as usual, and lots of things in place to cope with his disabilities/illnesses, but nothing for afterwards.

So now we're busy. Certificates, arrangements, letting people know, mountains of admin., collecting his clothes, talking to his care team (because they lost him too) etc. etc.. None of these are all that important in the grand scheme of things - except the people - but they give us a focus and little things remind us of incidents with him - and I usually lose the plot about then.

I'm fairly sure I'll carry on being involved with people with disabilities, particularly PMLD (Profound and Multiple Learning Disabilities), just not sure exactly how yet.

There may be an intermission here, but I will be back. I may have to alter my title - I'm not a carer now. And I won't insult those who still have that role by keeping an honourable title I'm not entitled to any more. However much I've done, I don't have to clean the poo or check the medicines any more - and they do. Respect the carers.


  1. Hi Ned,

    I've just been catching up on blogs and saw your recent posts. I'm so sorry to hear about your son. My thoughts are with you and your family. We'll welcome you back after your intermission, take care of yourselves, L.

  2. As a carer I would never be insulted if you continued to call yourself a carer. You were a carer, and still have a story to share about being a carer, so please keep it if you wish. And I'd be honoured to share the "title" with you.

    Be as well as able.

  3. Thanks both of you. Still in the 'busy' phase so I suspect things haven't hit us yet. We will get back to some sort of normality without him but I feel I need to carry on the fight so as not to betray him.

    Feel free to tell me if I sound out of touch.