There’s no instruction book or training manual to read when you’re a carer – it’s something you just do, making it up as you go along and learning from the mistakes you will most certainly make. You can find lots of advice around, and plenty of support if you’re lucky, but it’s a situation that’s unique to you so your days will not be like anybody else’s.
I’ve thought long and hard about whether I should even write this next thing down but this blog only works if I’m honest – it will only help somebody reading this to understand if I’m honest. The thoughts that go around your head can’t be controlled in this situation – however you would like them to be. The worst one of all is when you allow yourself to think that you want everything to be over. Let me be perfectly clear – I’m not sat here wishing that Carol would die, in fact I’m selfishly wanting to hold onto every single day. But that thought is actually about not wanting Carol to suffer anymore, not wanting this disease to take anything else away from Carol. I know how hard all of this has been for Carol and just can’t stop myself from thinking at times that she’s been through enough. I’ve said before that life can be cruel – and I mean that it’s cruel on all of us. How bad do I feel for even letting that thought enter my head? How can I even contemplate such a thing? I don’t have the answers but it’s a constant battle between wanting to keep Carol here with us while this disease eats away at her every day (selfish?) and wanting Carol to be released and free of it all (also selfish?) – and behind it all knowing the depth of the loss we’ll all feel when that does actually happen.
I wrote something a couple of weeks ago on the MNDA Forum, in response to a lady questioning how a carer should feel and whether it was right to not want to carry on. My reply was instinctive, typed quickly and without any real planning, but when I read it back I realised I’d written a very honest subconscious thought that I’d actually never said out loud before. I wrote this:
“Speaking as someone who's been caring since my wife was diagnosed in 2009, and dealing with all that needs to be done, I can honestly say that…should not feel bad for having those thoughts. I doubt there's a carer out there who hasn't hit the wall at one time or another - we're all human and we're all going through something traumatic. Everybody develops their own coping mechanisms but having the right support around certainly helps to pull you through. Those thoughts come from the circumstances we have all found ourselves in - they're not aimed at the people we love and care for. Carol gets frustrated with me as well - but it's what the disease has done to our lives that brings those feelings out - not the way we feel about each other.”
It’s the last part that really hits home for me – the person I’ve become is not someone I ever expected to be. There are times when I dislike this person – those times when my frustrations boil over and I get snappy. Don’t get me wrong – I would never do anything that would hurt Carol or endanger her care in any way, but there are times when doors get slammed and I’m generally grumpy because it’s taken me half an hour to get Carol comfortable in bed – pillows in particular are a nightmare these days. Then after the tantrum I feel terrible because I know none of this is Carol’s fault and I shouldn’t let her see those reactions. As I said above it’s the disease that’s doing this to us and there are times when I hate it.
As far as being a carer goes our days are all about planning and routine – this has changed regularly over the last 2 and a half years, in response to Carol’s condition, but they’re pretty stable at the moment. I get things organised the night before, next day’s clothes and morning meds etc. This gives me a headstart in the mornings, as I’m getting myself ready for work and setting Carol up for the healthcare ladies visits each day. As I’ve already said Samm looks after Carol during the week, and Kyle’s around as well, but most days I’m talking to someone in Carol’s support team. Whether it’s meds or care or general questions there’s usually something that needs to be discussed.
I come home from work each night and get straight into whatever jobs need to be done. Evenings are about keeping Carol settled – watching something on TV (currently working our way through the entire series of ER on Sky Atlantic). Feed needs sorting, flushes and meds go in at set times and then it’s all about bedtime – not forgetting any toileting that needs doing as well (Carol likes to save that just for me!!) then preparing for the next day again – and on it goes.
At the weekend I rarely leave Carol’s side – something always needs doing and the healthcare ladies only visit twice so there’s more to cover during the day. We’ve developed a routine that works and on these quieter days Carol tries to sleep during the afternoon – with varying degrees of success.
Sleeping is an issue I’ve mentioned many times already – Carol really struggles to sleep and, as I’m next to her on a mattress on the bedroom floor so do I! It’s been like this for over a year now and I can’t remember the last good night’s sleep I (or Carol) had. Keeping Carol settled through the night involves having to change her position, give meds if required, sort covers out and so on – and being woken to do this 4 or 5 times each night is normal. Those frustrations I mentioned earlier often rear up around 3am, when we’re awake for the 4th time struggling to function and the pillows won’t behave!
You just can’t switch off as a carer – getting Carol into bed means I can then think about the jobs around the house – and you all know they never go away. But all that keeps me busy – and busy works well for me.
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