You can rarely rely on time to deliver you events conveniently, can you? It's carers week this week so it would have been really useful if I could have blogged about the hospital appointment I have to go to with my wife and the amount of time we have had to wait for it. I could have related to you how well (or badly) I was received as carer, since some consultants treat me as part of the care team and some treat me as a nuisance, or just ignore me altogether. I could have written about the appointment we have with the dreaded ATOS, who's name is not held in any great esteem amongst people with disabilities. I could have told you about having to rearrange my life at the last minute to get to an appointment we barely need, since all it does is affirm that my wife is disabled enough to get her national insurance contributions paid for her. I could have moaned about the fact that these two things happened in the same week, and consequently took up all my time off. Unfortunately they are both next week, so I can't do any of that. Instead, I'm going to have to tell you about another challenge of being a carer, and how something happened that was actually good.
People talk a lot about respite among carers. The problem of course is that caring isn't actually my job. I have another job, which takes up nearly fifty hours of my week and for which I am actually paid. Caring is the thing I do when I'm not doing that, and takes up a large chunk of what is left of my waking life. Like most carers then my free time is often busy and stress filled and I don't get as much time to relax as non-carers. It would be really useful to have name for non-carers, in the way that Jews have for non-Jews. I'll get back to you on that. In the mean time, the idea of respite is that somebody else looks after your caree (I don't really like that word either, the whole lexicon needs some work, frankly) so that you can take a break and focus on you.
Which is great. And I had a lovely opportunity last weekend. Richard Herring is a comedian I first became aware of 20 something years ago in the comedy classic Fist of Fun. I rediscovered him recently and my bus journeys to and from work have been brightened by his brilliant podcasts. By chance while listening to one I heard him mention that he would be passing through the town where I live with his show Lord of the Dance Settee. For once time was on my side: it was on my day off, so I could easily make it. The problem though, is that I was never going to be able to afford it. I'm the only earner in our household and disability benefits don't amount to as much as the Daily Mail might have you imagine. We get by, don't get me wrong, but I don't have a spare £32 I can reasonably justify spending on anything we don't specifically need. Another time, maybe.
I mentioned this in passing to a friend. Such is life, I said. My friend does some work at the theatre in question and reckoned he might be able to get me a couple of tickets. So with 48 hours notice my wife and I were off for a very rare evening out to do something we were going to do entirely because I wanted to. If you think that doesn't sound like an event worth writing an entire blog about, then perhaps you now have a better understanding of what being a carer is like.
Well I literally (and I do mean, literally) cried with laughter at times for a good two hours. I loved being there, being a huge comedy fan at a comedy gig with other comedy fans. It was the sort of thing I would do all the time if I could, and I think I probably just enjoyed the experience of doing something just for me. Maybe, for me, this is what respite is.
The following morning I realised that I had enjoyed myself so much I'd forgotten to refill my wife's pill pot. I had to do that in a hurry before I went off to work. Which proves, I guess, that you can't go off duty for long. I may not be doing care things all of the time but I can't afford to lose track of my timetable. But that's a lesson I can use for next time. Assuming there is a next time.