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!
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!
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.