It's one of those days when it's catching up with me again. My workload has been building up as there's such a backlog. I've been needed so she can talk things through to someone quite a lot recently, as there's been one source of confusion or upset after another. It's all very well the therapist saying that it's good training and that the world won't adjust for her, but the impact these things have on us here at the coal face can be crippling. And how many can take 2 or 3 hours out of their day? Once is hard enough, but every day for 4 years really adds up.
And so the backlog builds, and the weight of it feels so heavy, and yet time marches on. Dinner needs cooking, the weeds are growing, the animals need feeding and the youngest needs help with her homework.
The time spent with muscles tensed through stress leaves them aching and stiff, my head is aching and I feel so very tired. I catch myself sighing loudly, and feel as if I could just sit down and cry. For hours. But that is not possible, she is so hyper-sensitive that I'd be found out in a flash, and it would be so hard on her. So I keep it in again. And dream of a time when I can find a place to hide away and weep.
Saturday, 15 March 2014
Monday, 24 February 2014
Such long days
A carer's day can be so very long. Mine starts early, getting up before everyone else just to get my own head straight, and try and make sure I have done what I need in order to get through work ok. Then the little things that are so essential to helping ease her into a sense of being functional. Nice pot of tea, and the teacosy on, a gentle call that it's morning again. Listening so carefully to gauge from her muffled voice her state of mind, without needing to ask and cause stresses. Trying to get her own mind round to being able to express in her usual specific and exacting manner exactly how she is feeling can be overwhelming. Once overwhelmed, there can be no going back, and potentially a whole day wasted. It's not so likely these days, but the threat is ever-present. So, like a bomb-disposal expert, I listen intently. And I don't ask how she is.
"Shall I bring your cup of tea up, or shall I leave it on the coffee table?" The gentle cajoling needs to to take different forms, but should come reasonably regularly as she loses track of time. But they can't keep on or mention that, as she can start to dwell on what she finds difficult nowadays, or how much it can all seem, which then slows things down even more. I NEED to get to work, and it is so much easier if she does make the bus in time, but she can't be made to feel the urgency as then frustration or guilt slows her down more, and the downward spiral begins.
Many times, this spiral is only one way. And eventually the whole day is given up on. But the decision to stop is put off as hour after hour she tries and fails to get started.
It's nearly midnight. She's been in bed for an hour or so, her tablets have helped her drift off, and I've managed to secretly catch up on some of the work I should have completed. But she is sleeping, and so I've helped her though another day. And I can't think anymore, so have to give up on mine too. Until tomorrow comes and we start yet again.
"Shall I bring your cup of tea up, or shall I leave it on the coffee table?" The gentle cajoling needs to to take different forms, but should come reasonably regularly as she loses track of time. But they can't keep on or mention that, as she can start to dwell on what she finds difficult nowadays, or how much it can all seem, which then slows things down even more. I NEED to get to work, and it is so much easier if she does make the bus in time, but she can't be made to feel the urgency as then frustration or guilt slows her down more, and the downward spiral begins.
Many times, this spiral is only one way. And eventually the whole day is given up on. But the decision to stop is put off as hour after hour she tries and fails to get started.
It's nearly midnight. She's been in bed for an hour or so, her tablets have helped her drift off, and I've managed to secretly catch up on some of the work I should have completed. But she is sleeping, and so I've helped her though another day. And I can't think anymore, so have to give up on mine too. Until tomorrow comes and we start yet again.
Sunday, 23 February 2014
A start
I feel like I've been holding my breath for over 3 years, just watching and waiting and serving and thinking and studying and waiting and holding it all in. It's so important not to betray my true feelings, of exhaustion, or worry, or shock, or despair. Nothing must leak. Nothing must go out there. Nothing must be detected. Not a facial twitch, or sigh, or welling up, or a downward look. Nothing at all. She is an expert detective, a card shark, a reader of faces. Over 75% of communication is non-verbal and she can read it all. And, like a nervous animal, not a hair will be seen outside of the safety of cover unless she is absolutely confident that all is well. Not one slight murmer of her thoughts, anxieties or state of mind will be released if there is any doubt at all that she will be accepted and understood.
And yet, there is a faint glimmer of a lightening, of a hint of direction, of a possible way to less darkness, less oppressive conditions, somewhere that is easier to breathe in. But with that slight shift towards hope, comes a greater pressure on the flood gates. I dare not let them go, but I am starting to crack. And so, in desperation to share and maybe ease the load, I have started this blog.
Keep your fingers crossed, and maybe also your toes!
And yet, there is a faint glimmer of a lightening, of a hint of direction, of a possible way to less darkness, less oppressive conditions, somewhere that is easier to breathe in. But with that slight shift towards hope, comes a greater pressure on the flood gates. I dare not let them go, but I am starting to crack. And so, in desperation to share and maybe ease the load, I have started this blog.
Keep your fingers crossed, and maybe also your toes!
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