THE UNSCRIPTED CARER PART 2
As a child of the sixties, it never occurred to me that my life would be any different to the “standard script”. I grew up in Yorkshire and walked across the fields to my primary school, and when it came to secondary school I soon got used to a journey to school by two buses. I even got used to the totally unfair approach of the school, who blamed me for getting to school late, when the public buses ran late! As a rebel, I objected and eventually got the rules changed. So it seemed quite natural that I should start my working life in Rugby – which seemed to be the other end of the world at that time.
Our working lives had their normal ups and downs and my wife and I were expecting that my mum would move down to live with us, or near us, after my dad died, three years ago. However, this is where our life forgot to read the script! My wife had gradually slipped from enjoying full health and a rewarding job with TNT, to become disabled and almost housebound, being unable to sit down at home, or in a car for more than a few minutes. My parents never really came to terms with the fact that we could not travel to see them in Leeds, and still expected us to follow the “script” and do all the travelling – even after they were both retired and were used to driving quite long distances.
As my wife’s health continued to deteriorate, we decided that I needed to give up work to care for her full time.
This is the time that you really need your friends and family to support you through a very difficult change in lifestyle. However, I guess parents have their own “script” that puts them in the centre of your attention, and it is quite a shock when they realise that the “young woman in the family” is not there to act as an unpaid servant, but she actually needs the family to help and support her.
The unscripted shock to your life style becomes even harder as I/we now to have to care for a disabled wife (which includes cooking and baking to accommodate food intolerances); “educate” the in-laws (who have eventually realised that their daughter really is not going to get magically better and that they now have to do the travelling); and a mother who will not move from Leeds, but expects to follow her own “script” where we are “next door”. The final straw, that very nearly broke our camel’s back, was that one of our two dogs, became quite poorly and very diabetic, which also upset the other dog who tried very hard to help, but didn’t know how to!
Individually, each set back was manageable, but they all seemed to come at the same time, and we are still sifting through the debris of our previous life. It seems incredible that our “new life” started only 6 months ago, in some ways we have come such a long way, in other ways there seems to be so much more to sort out. We were lucky to stumble across Guideposts in the early days, and they have given both practical help and general “soft” support. In fact everybody that we have actually met (from Guideposts, Social Services and Job Centre Plus) have been very helpful and supportive. Unfortunately, the benefits system revolves around filling in forms and dealing at arms length, and somehow having to guess what the questions really mean.
We have had a varied success rate with the official forms, and have found it all very frustrating, especially when the various “experts” say that you should have got somebody from CAB / DIAL / CDR / Warwickshire Welfare Rights, etc to help you fill in the form, and the whole process is generally regarded as a lottery. However, none of the organisations will actually help you fill in the forms – today we have found out that there was a three year lottery project to help people fill these forms in, but the three years have now run out. It is extremely frustrating that this was recognised as a big enough problem to be given lottery money nearly four years ago, but now this help appears to be no longer needed. There is now no lasting infrastructure, or support information, to provide such help. It is even more damning that the people that need this help are probably at the lowest ebb in their life, and are probably taking more prescription drugs than at any previous time in their life. So what has the lottery actually achieved, apart from helping a few people for a short time? In reality, this is a long term problem that requires a long term solution – not just a short term piece of sticking plaster. (Perhaps I feel a campaign coming on!)
As well as the day to day frustrations that arise from being a “carer / cared for” person, there is the mental loss of the satisfaction of doing a “good job”. At times it is quite nice “just” to be a carer, at other times we both want to help change things and miss the cut and thrust of our previous jobs.
