03 August 2013

Woes and wonders

MARIE: We had a visit from a local authority worker to talk about our potential future needs for outside help with Jon’s care and how that might best be provided. Basically, I am trying to prepare for the time when it becomes unsafe for Jon to be left alone. I have seen many carers try so hard to be all things to their sick spouses that they end up running themselves into the ground and being no use to anyone (including themselves). I don’t want that for myself. The easiest option would be to apply for a nursing home place at that point, but I can’t see Jon thriving in a place like that, not least because of the language barrier. I don’t want that for him. So I’m exploring other options, specifically finding out what it takes to get funding from the local authority for us to hire our own helpers more or less round the clock. I know that option exists, and I know it’s very difficult to get approval for it, but I can dream and I can scheme.
 
So, a nice woman came round to explain the application process and our local authority’s view of who is eligible. She wanted to start a file on Jon right away, which I believe will be helpful for us later on, but which required us to go through in excruciating detail, for the umpteenth time, our entire history of woe. We had to lay out in full view all the things that Jon can’t do or finds it difficult to do, all the things I have to help with and keep an eye on, all the things we get assistance with and all the things nobody can ease. How do we feel about A, do we get terribly frustrated about B, and are we able to engage in C at all?
 
I see the need for the questions, no argument there, but it is SO HARD to have to focus on all the stuff that’s wrong, when normally we try our best to be blind to anything except the stuff that’s still right. Jon’s short-term memory is a blessing in heavy disguise, I guess, but I was down for days after this reminder of the challenges before us, both now and in the future. The future is not really something you want to dwell on with two degenerative diseases in the house, and yet you have to do what you can to prepare yourself, if not mentally then at least practically.
 
I wish there was a way to get help without actually having to ask for it.
 
On the definite plus side, we got new kittens. They’re impossibly cute and far to little to be without their mother, but heartless people just left them in a cardboard box for the cat sanctuary to deal with. Jon and I are their mummy now – and are in ruthless competition for their attention and affection.

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