I Couldn't Care Less: Her, me, them and us
Created | Updated Nov 24, 2013
Her, me, them and us
Thinking about what to write this week I thought about the aspects that the sum total of my caring breaks down into. It has become more than just that thing that I do, as I intimated the other week it has become much more about who I am and how I am. Not only does it encompass the things I already was, it is actively shaping the things I am. As my title this week implies, this breaks down, in my mind at least, into four distinct categories.
Her is, of course, my wife. She is primary focus, as she is the cared for. So for her I can do several things. In the first place, I can give her all the support her condition requires. I can do my best to make her comfortable, keep her warm, tend to her aching muscles, pick her up when she falls, do her heavy lifting, organised her medication. Beyond that, I can do things that she could do without doing, but could use anyway. I can chase hospital appointments. I can go with her to appointments, explain things to her consultants, tell them things that she can't see (like how she sleeps) and make sure there are two of us to remember to mention all the things we discussed before we got there. In essence, then, there is the stuff she needs, and the stuff she doesn't need but benefits from. Onwards.
What can I do for me? The first thing I can do is learn. What does this mean? How does this work? How can I do this better? There's plenty to learn about how her condition affects her and why. There's new medicines to remember and try to understand, new aspects to her condition, new specialists, new rules about benefits. I've got a book about ehlers-danlos syndrome to read somewhere, but I haven't read it yet because I'm too scared.
Meanwhile there is the business of looking after myself. This can be something of a challenge because firstly it goes rather against the grain to focus on myself when there is always so much other stuff to do, and secondly I don't always realise I need helping. The thing you may find if you care for someone after a while is that you learn to read them. You can tell when they're tense, or in pain, or struggling for breath or whatever it is that's wrong. You can see when they can't and when they think nobody else can. But you could have run yourself into virtual exhaustion and not quite noticed. It's that bit easier to assess yourself analytically like that, and you don't have that crucial physical and emotional distance. Sometimes your caree can hold up a mirror to you, and what you need to be able to do is listen.
Meanwhile onwards to them. Them is everyone else. What I can do for everyone else is to educate them. That sounds a bit patronising and I don't mean it to. Well, sometimes I do. Basically, there are people with open minds who want to know what it is like to have a life they don't have. We can all do that, all take an interest in the lives of those who aren't us (ie, everyone else) and understand a world beyond our personal experience. Anyway, the other type (gross simplification alert) are those who don't know, but are happy to make judgements, and in some cases political decisions) regardless. For the benefit of the first group I do things like writing this column, in the hope that I, along with many others, may help them to understand better. For the benefit of the second group I sign petitions and send e-mails and pester them with tweets and try to make a noise about the wrongness of their lazy assumptions and crass stereotypes. At the time of writing I am still pestering UK theme park Thorpe Park about what I, and others, see as the very poor taste and misleading implication of their decision to name a Halloween ‘attraction' ‘Asylum Maze'. I think it makes the mentally ill generally appear dangerous and violent, which they aren't. So that's them. What about us?
Us, to be clear, is me and my wife. Because we're not just two individuals, we're also a pair. Part of the challenge for us to make sure that our mutual circumstances are as favourable as possible. Over the last few years this has meant making sure our flat is in working order (it's never in working order); making sure our flat is where we get to live for the long term (this too has been an on-going battle); trying to make sure we have enough money. Generally making sure we're okay, and, if possible, on the track towards being more than just 'okay'. So that's what I do.
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