THE UNSCRIPTED CARER - 13TH NOVEMBER 2007
Last week started so well, with my “cared for’” visit to the GP, and my First Aid carer training. Unfortunately, things have gone down hill since then. I don’t know if it a side effect of the new stuff that Nicola is taking, but Nicola has started to be quite loquacious when she is fast asleep in bed. We have quite serious conversations, while she is fast asleep, and I am now wide awake. So far, we have spoken about many things, including planting Raspberry canes along our new bit of fence. She wasn’t sure whether I should move some canes that we already have, or to buy some new ones. I had to tell her that it was too dark and cold to do it now – only then did Nicola stop talking and I could go back to sleep. I am a bit concerned about our rhubarb, but so far Nicola has not (yet) woken me up to talk about what we should be doing with the rhubarb! This is quite amusing the next day, but is a real pain as I get less and less sleep, which leads to a general grumpiness. Friday was quite a good summary of our “caring” life. There was a special anniversary event at Guideposts, that I had been looking forward to for some time. I really fancied seeing the Chinese Dragon, and trying to take some photos of it, as well as meeting up with old friends. Unfortunately, Thursday had been quite hard on us, and by Friday neither of us were up to me going out for a few hours, and leaving Nicola alone. One of the first lessons we learned since the “carer / cared for” relationship developed, was that it is difficult to plan ahead, and we were reminded of this once again today. Today, Sunday, is the day we wash Max (the oldest of our dogs) who needs a special shampoo to help his skin. This means that I need to don latex gloves, etc as the shampoo fetches me out in a rash! Nicola was able to have a bath today, so she was able to have a nice “Fenjal” bath, and Max then used the old bath water. He absolutely adores a bath, and the “Fenjal” seems to condition his skin, although he does smell of “Fenjal” afterwards – not the most masculine of doggy smells! I think I have made a major discovery today. I am perpetually tired and have been wondering if I have one of these debilitating illnesses, such as “ME”, etc. However, last night I was woken by all sorts of mundane things, such as the dog turning over in his sleep; Nicola moving her arms over her head (I need to get her to NOT do this, as she wakes up with back issues); a strange noise outside, (it sounded like a bat), etc. I think that I have just got used to sleeping very lightly and so I am missing out on a traditional “good nights sleep”. I am reassured by friends that I will get used to this, all I can say is “bring it on”! On a more serious, and very time consuming topic, we are trying to convince the DWP that Nicola needs care – it seems odd that I needed to give up work to look after her, and yet we are still struggling to get the levels of support that we are told we should be eligible for. We are frequently told that the system is a lottery, and that “they” make seemingly arbitrary decisions without even talking to us. I think that the main problem is that the relevant forms do not really allow us to explain what is wrong with Nicola, and so we always struggle to explain things to them. We are constantly being advised that we should not full the form in ourselves, but, it appears that the funding to support people to help with filling in the form ceased last year – and now there is nobody who actually helps you fill in the form. Even dafter, there are organisations that will help you through an appeals process once your claim has been rejected, so basically the process is as follows: It would seem a little bit of an Alice in Wonderland situation. So we tried to get some impartial advice before we re-started this bizarre process, but no such advice seems available. Rather circuitously we were given some “Self Help Guides” to filling the forms in, and these really are useful. I find it difficult to understand why these are not just posted routinely with the forms to fill in. I don’t think that “they” understand the mood swings that carers and “cared fors” have, and the process needs to recognise that “they” may also find themselves in the identical position in the future. What makes it even more annoying is when some government lackey criticises some private institution, such as a bank, insurance company, pension company, supermarket, etc. for not doing something that is not their responsibility, whereas the government is more than happy for us to pay taxes all the time, and pay health insurance premiums and pension contributions (National Insurance), but then prefers not to honour the insurance policy and the pension that these payments bought. I wonder how they would react if a private pension company, or health insurance company, behaved in such a way?
