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Pam Ayres & The Dentist’s Wife

October 22, 2014

I rather enjoyed the first two days of the week.

On Monday, I continued my grand tour of the airport hotels and had a respite night at the Holiday Inn. Imagine my surprise as I sat in the bar with a Guiness and a scone, to find Pam Ayres and her agent sitting at the next table. It would be indelicate to reveal the engagement they were discussing, suffice to say it will probably involve the Queen & The Tiller Girls.

Yesterday, I spoke about my work. Ive been invited many times since 2010 to talk about the court case, DoLs and social care but it’s the first time in ages that Ive been asked to speak publically about my day job. It was a great group who were very open to the benefits of therapeutic imagery. It left me with the feeling that I’d like to do more of that.

Change of emotional gear this morning though. I had to write a statement for the first tier Housing Benefit tribunal about my relationship with my late wife. Hillingdon took the view that as we were living apart (albeit, at their insistence), we were no longer a couple. They took no account of what family life is like when one member of the family has serious mental health problems and another has autism. Having to write a statement to try and demonstrate that I still loved her and cared about her until she died, was really upsetting. Like so many of the official reports about Steven that show they have absolutely no idea who he is, neither the LA nor the first tier tribunal showed any understanding of our family life. They weren’t interested. I added as a postscript my feelings about her death and realised they are still very raw, five months on.

To end on a good note, I forgot to write last week, what may be one of my favourite Stevenisms ever. It’s a classic example of how he frames and makes sense of his world. Last week, my sister was in hospital and as I was leaving to visit her one day, the support worker said, “I hope she’s better soon”.

Steven, who had been earwigging, said: ” Who? Syb or the dentist’s wife?”

I wish my world view was like that.

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From → Social Care

11 Comments
  1. So sorry about all you are going through Mark. I didn’t really understand about your wife before. It’s so difficult to have to explain things to seemingly non-caring people again and again. It’s reassuring for you that Steven is mostly happy in his world.
    Did you see @katherinechrome’s use of imagery in the comment on her blog?. I’ll have to give it a try!
    I’m glad you had a better couple of days – but not at all sure about your diet of Guiness and scones! 🙂

    • Ah. That was an afternoon snack. For my evening meal, I dined on the carvery

      • Pauline Thomas permalink

        Mark how many families have to lay bare every detail of their personal lives to so many state agencies? Is it only families who have caring responsibilities? Do we not suffer enough? Why so many intrusive questions? The stigma of having every little life change gossiped about amongst the many social workers, day service staff and health professionals who are an ever present part of our lives as parents with a son or daughter with learning disabilities.

        To be honest there has been some wonderful people in our lives. The school staff, the college staff and some really lovely day centre staff. Some of these people I am still in contact with many years later. Although I have absolutely no confidence in Royal Mencap’s ability to really fight our corner, (too much reliance on government funding) I have much fondness and respect for the people who are employed by our local Mencap.

        Mark I hope the road you walk down with Steven will be a smooth one. I know it will be full of music and crazy jokes.

  2. Jayne knight permalink

    I’m eating a whole load of nuts washed down with some vino verde. Somewhere amongst the mixed,spread out nuts (on the side table of my hotel bed) is an earring! I haven’t eaten all day and then oh joy I found the bag of nuts. I haven’t seen a celebrity yet but was rather fascinated by the thought of the Queen maybe being a tiller girl in her youth. I don’t know why? I got into that fantasy easily.
    Anyway I’m totally disturbed with why your love has to be justified to snyone.? If it was part of someone listening and comprehending what you have been and are going through and being empathetic well maybe that’s just great. But to censure, analyse and suspect you is vile. Completely vile. I’m sorry that any service we all commission by paying our taxes, like you do, does that to you. So very sorry.

  3. Weary Mother permalink

    Mark
    Two things here.

    One thing is: that we ‘know’ as far as anyone knows another… our son or daughter.

    We are the fortunate ones who get that joyous and so very complicated emotion; when our unique son or daughter amazes us yet again.

    The other thing is: that in Social Work there is such thing as confidentiality. I researched health and social care for a living for very long time and remember a senior SW declaiming (yet again), and clearly believing in… the SW’ profession’s core principle of….. ‘confidentiality’. In reality, only too often this ‘principle’ is used to keep the talked and written about in the dark, and out of the loop.

    In reality every one within reaching distance of the SW files, (when I was a SW the cleaners used to have a shifty look at their neighbours files) or has a seat in any old SW et al meeting or who is making coffee in the office kitchen while SW’s et al are having a chat about us mid meeting, ‘knows’ about us. SW etc al can and too often do chat carelessly and openly about us and ours. And the most thoughtless sling our deepest secrets and fears (all moulded and remodelled into solid subjective fact) in open earshot.

    At it’s worse ‘Confidentiality’, just masks formalised and power misapplied.. group gossip.

  4. Sally permalink

    You should have to explain the situation with your marriage and Steven and living arrangements and anything else which would give a picture of what things were like, along with any information/accounts from others which back you up etc.
    Once.
    Having put that down clearly you should in no way be made to go over and over and over it. Yes, if its an unusual situation you need to give a description but you should only be put through this once.That’s the point about documentation, its meant to prevent us all from having to repeat ourselves again and again.If there’s any small thing they don’t understand you should only be asked to enlarge on that thing and be given an apology for being made to go over painful and personal details again.
    I am sure you have already explained the situation clearly. What’s going on?
    I am very sorry you are having to sit down and write about it all so soon after your wife died. That must be terribly painful.

  5. Hi Mark, I can’t find a workable email address for you, and would really like to make contact.

    Bw

    Simon

  6. Sally permalink

    Mark!
    On BBC News 24 this morning- a distraught elderly couple, parents of a young woman who has severe learning disability and cannot walk. She has been attending a SCOPE day centre for years, is happy there, loves the routine,staff are like family to all etc etc. Works well for her and many others.
    Guess what? They are closing the centre. The father cried as he said he couldn’t even tell his daughter what was to happen as she hasn’t the language to understand.
    Up popped a confident man from the authority explaining that what the disabled want is to be more part of society and they are responding to the “changing needs of the disabled.” by closing the day centre.He didn’t mention the position this put her parents in because I honestly think that didn’t occur to him.I don’t think he gave a thought to how home life would be from now on. for this and all the other families affected.
    This was everything you write about. Firstly, it was obvious that the very confident man in power had no clear idea of of what somebody with profound LD is actually like. He seemed to imagine thta people with LD are all able to use language and integrate into society, its just that they haven’t been given the chance.The young woman in question probably had a mental age of three and had no ability to express a wish to integrate or any awareness of that or any other abstract concept. Her parents were coping knowing she was somewhere during the day where she was happy and well cared for.They were distraught knowing that this was going to end.

    I am so upset about the news item. Why is it that nobody, nobody involved with that or similar program ever brings the two halves together? Asks the man in power to give his views on the benefits of closing the day centre directly to the young woman and her parents? Be invited to suggest just how she make use of her independence?

  7. Weary Mother permalink

    I saw it too and was screaming at the screen that someone ask this CE some serious questions. And where was Mencap et al. This CE skipped through the interview completely unchallenged.

    • Sally permalink

      Yes Weary mother,-where was Mencap??? Now, there was an opportunity to appear in an interview with the parents and the CE and put some forceful points.

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