As I write we are coming towards the end of carers' week 2014. Hopefully you will have been caught up in the influx of data being spread your way about how much carers save the economy each year (about £119bn - you're welcome) and heard some stories from carers about what they do and how they manage. With any luck you will have picked up on what a vital job they do and got an idea of the respect they deserve. Well not me, I'm afraid. I do that job and it is important, but I can't help thinking that compared to everyone else I'm just an incompetent.
Take medication. I know carers who are as fluent as pharmacists, which sounds better than it reads. They seem to know all about which medicines are which, what they do and how to say them. I can barely keep up with what my wife is taking now. Occasionally I stop myself in the middle of filling up her pill pot, stricken with the panicky belief that there aren't enough boxes, and that I must have forgotten to request a repeat prescription for something. I look through the various little tablets and try to remember what they're for and whether there isn't a job that one of them should be doing that isn't being done.
I should probably read up on the subject. Yeah, I bet that's what the others all do. I'll have a hunt around and find book on medication that I can browse through after I've finished that A&E Nurses Guide to Pain Relief and perhaps have another quick flick through the book I read from cover to cover on a condition it turns out she hasn't actually got. From time to time I will weaken and read the information in the leaflet that comes with the tablets, a choice I almost always regret. It turns out that berriflytozerade is usually given to corpses post-mortem to prevent their lungs collapsing, or used as a powerful sedative for elephants, and says 'do not take unless you are eight months pregnant or sitting in an oxygen tent'.
Then there's the psychological stuff. Plenty of people with disabilities don't have a specific mental health problem, but they all have to deal with the impact of being disabled. The sense of uselessness, the indignity of having to rely on another person for the most basic of jobs, the limited or complete inability to work for yourself. This augmented by the pain, or nausea, or sleeplessness or sundry other depressing maladies which afflict people who can't care for themselves makes a potent and challenging emotional cocktail. But never fear, madam, Captain Carer is here to save the day. I can soothe, mollify and console some of the time. I once spent an evening in A&E with my wife falteringly singing Monty Python's Eric the half a Bee to her in order to cheer her up. But sometimes I find a fragile, vulnerable and incapacitated wife a little annoying and I lose my temper. It must be all those undisturbed nights' sleep I'm getting, or the ability to relax in a comfortable chair without any part of me hurting at all. To be fair, telling a depressed person to 'stop being so miserable' must work sometimes mustn't it?
I really suck at this.
No matter, at least I can do the straightforward physical caring, can't I? I went on a course to show me how to guide a partially sighted person properly, and I spent a day wearing a pair of modified glasses which roughly mirrored the extent to which my wife can (and can't) see, so I am well on top of this. Or rather, I should be, but despite all of this guidance I'm still not. I put stuff back in the wrong place so she can't find it. I leave items of furniture which she can't see sticking out so she trips over them. She depends on me for these simple, basic things to give her some measure of independence and to enable her to move around her own home without harm and I can't even get that right.
The truth of course is that I could always do better, but there is an awful lot to get wrong and I am bound to go off course somewhere. But I also wonder how other carers view themselves. The rest of the world tells us, quite rightly, that we are good people doing an important and valuable job. For most, if not all, carers I suspect the truth is that what they are doing seems no more remarkable to them than raising a child would to a parent. To compare children to people with disabilities is somewhat patronising, but to both parents and carers the emotional bond is strong, the challenge they face is important and substantial, and the prospect of shirking is, usually, unthinkable. The challenge for them is to always do the best that they can. The challenge for us is to make sure they have every support they need in doing it.