Blessed is she who expecteth nothing …..

Imagine you were going to the dentist. You weren’t worried or nervous, you just knew it was something you needed to do.

When you arrived at the surgery you were shown into the waiting room. You sat down then looked around the room. On all the walls there were pictures of dental procedures and, as your eyes moved from one picture to the next, your stress levels rose.

That was what it was like for me today. As I sat in the room waiting to see my MP there were photos all looking down on me (literally as well as figuratively) and I could almost hear them saying ‘Why are you here?’

David Cameron, John Major, Margaret Thatcher ………. Not the sort of company an ex teacher from a school in a very deprived area of Inner London is likely to feel at ease with.

So why was I there and what did I expect to achieve? As I said in my last blog I was there because of the difficulty in gaining access to support and, quite honestly, I didn’t expect to achieve much!

My MP arrived and we went into another room, that helped :-).

He began by saying that he’d read my email and that he was sorry I’d had so many problems. That although these weren’t his areas as my MP he had some responsibility.

We started with the Blue Badge photo issue which I was happy to tell him was now resolved, although it cost me two days ‘care’ money to call the 0845 number to pay for it!

The wet room – estimated cost £5000 but we are not eligible for any help from the disabled facilities grants because I have worked all my life and I have got a pension. Yes, you heard that right. Not only have I given up many aspects of my life (& saved the state a fortune) to care for Ray I am now lucky enough to be allowed to give up my pension to pay for his disabled facilities.

The care component. I told him how insulted I feel that what I do is valued at £12.15 a week. I said we would be appealing. He said he would write a letter I could send with the appeal but it would probably not carry much weight.

As I’m writing this I realised £12.15 did not sound right.

Googling reveals that the lowest care component is £21

But Ray has been awarded £12.15!

He said he would write to our County Council asking what help they could offer including respite care. Ray has made it clear tonight he won’t have that!

As we chatted at the end we talked about more personal aspects of our lives which I won’t go into but which were more ‘real’. I told him that what I was really after was not necessarily the money but the recognition of what I, and many, many other people do on a day in, day out basis.

I told him that Ray and I are not married and that we had 28 months of a ‘normal’ relationship followed by 25 years of my being his carer, with no aspects of a normal relationship!

I told him that I wanted people like him to understand what the lives of people like us are like.

As I left he asked if he could ask me a personal question. I said of course, and I meant it.

He asked me why I have stayed with Ray and kept caring.

Some people may have been offended by this. I was not, in fact I felt it was probably the strongest moment of our meeting.

I told him that everybody had told me not to, but I was not brought up to walk away. My mother supported and cared for my father. My maternal great grandmother did the same for her husband.

I am a strong woman from a line of strong women!!!

That said, I am not invincible.

I found this whole business extremely difficult.

Those of you who know me know that I do not do crying. Put on the positive face, laugh, joke, turn every negative into a positive. I explained this at the start of our meeting but warned him how hard I find it and to ignore any tears.

My eyes leaked all the way through the meeting and we both ignored it. I’d like to say thank you for that!

What next?

As our care part has now been assessed at the lowest level again we are now going to appeal to an independent tribunal.

Ray’s mum has kindly said she will pay for the wet room so we will look at getting that started.

I’d like to thank Ray’s mum and my brother and sister in law for the support they give us. They’ll probably never see this or know I’ve written it but it really helps.

I’ve got some ideas on how I’d like to see carers helped and that will probably be the next blog!

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Oh, I told him I write a blog and gave him the details so I expect he’ll come and look.

I hope he agrees this s an accurate reflection of our meeting, and if not, makes a comment.

13 responses to “Blessed is she who expecteth nothing …..”

  1. Wow , Gill well all I can say is that , if in any small way you have my absolute respect for what you have been through. If there is a heaven up there …… Your going !!! If not …… Well what can I say your the real deal .. XX

  2. *crying* had to wait for the tears to clear before I could respond

    He asked me why I have stayed with Ray and kept caring.

    Did he think you could walk away from what you had and still have but it is different……

    *deep breaths and more tears and another wait for the tears to clear*

    this could take some time…….. as the tears keep coming

    if someone asked me that –

    I do it because he is the other half of me, we are a circle.
    Some people never get what we had and still have although it is different the connection is never lost. The person is the same locked in a body they despise. They want to still walk beside us and hold us and want to surprise us but they can’t. The strokes robbed them of that.
    In a blink of an eye life may change forever but those feelings and connections do not go.

    *more deep breaths and tears*

    He needs to ask himself what he would do….. and what the other half of his circle would do…

    Sincere apologies if the above makes no sense but I can not re read it for the tears

    Val xx

    • It does make sense but I feel so differently about it. To me it was an honest, sensible question and I prefer to be asked things directly than to know they are being wondered about anyway
      The reality is that most couples do split up.
      We had not been together very long, 28 months. We were not married, had no kids, pets or property.
      I wanted kids. I wanted a proper relationship.
      What would I have done if I’d known I’d be caring for 25 years? The honest answer is that I do not know!
      Ray was not expected to live, but he has.
      Like a lot of my life, I go here by accident.
      If I could do it differently?
      Honest answer?
      There’s a good chance I would!

  3. we were not married – had been together 25 yrs

    But I really believe that some people can live a lifetime and not have what we have…..

    We married after his strokes for 2 reasons

    a) He thought I could leave him if we were not married and he was so frightened I thought he would have another stroke

    b) it was advised that his private pension could not be sorted properly as there is no such thing in law as a common law wife…. (I honestly could not care less about the £88.50 a month his private pension will give me) but it worried him

    It was not expected Phil would live…. when he came home from hospital the staff told me I was living with a ticking bomb…..

    Some days I believe the bomb is still there yet others I tell myself they were soooo wrong.

    – when the circle breaks it will be devastating for both of us

    We are on the list to move into an assisted living flat – this will guarantee that we will not be separated

    I miss * a proper relationship* but I would be nothing without the other half of the circle

    xxx

    • Your time together has been the opposite of ours though. You had 25 years of normal. I’ve had 25 of caring so our views are going to be different!

  4. I’m not at all surprised your eyes were ‘leaking’ Gill. I’ve been crying buckets just reading this because you have put into words what I have been feeling for so, so long, although not as long as you. Thank you so much for fighting, for talking to the right people, for not giving up and above all for being you. I know you are a strong person, but please remember that strong people are allowed to cave in sometimes and have time for themselves and the odd treat here and there that everyone else ‘allows’ themselves to do. I too have learnt the hard way that it is vitally important for your own health and sanity. Take care of yourself Gill
    Rebecca x

      • GILL, my sincere thoughts and good wishes, I had been married for 3 years when Terry had a stroke, and Ive been carer 24/7 to him since. I wouldnt be without him though things have got bad since the alzeimers set in a bit. Ive learned to put up with being called his first wiifes name and told to walk her dogs and such. Inside Terry is the same person, trapped in a paralysed body. Since the first stroke he has had 3 more, smaller versions, but not TIA’s, and has got kidney failure, as well as heart trouble.
        I too have nolife to call my own and my “good years” have gone by as I have now begun to get problems of my own. (good days and awful ones) and yes I understand what you mean. He is your husband whats in a name?
        Stay strong.

  5. Tears streaming down my face after reading all this, not helped by all the emotions that are going through my mind after attending a wedding tonight. Hope you sleep tonight. Gill.

  6. Well done for getting an important point across in a fantastic fashion. Your voice & thousands of others in similar situations needs to be heard.

    I suspect put me in your situation I could not/would not have done what you have done.

    That’s great you’re getting help from Rays mum with the wetroom but shameful that it has to be that way.

    You have my utmost respect & admiration. xxxxx

  7. When I met the love of my life,he had a laugh you could die for.Those funny things he did had me in stitches,here we are 12 years later with our new freind Muscular Dystrophy.Our freind came in quiet like,with just a limp,but he took away my hubbys ability to ride and reach motorcycling.He took away his ability to walk along a beach holding hands.He took away my lover.He took away our home and livelyhood.But he left me with the man I married.He left me with a best freind.He left me with someone i will love and care for the rest of my life.The role of carer is one I am happy with,how could I not care for this man.I will fight tooth and nail for him,no disabled bashing in my hearing.Appeals.?.PAH done them,and will continie to do them.He is my reason for breathing.Do i feel special? no,Im lucky.

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