Nasi goreng

The reality of things doesn’t always match what you thought you knew to expect.

Which is a bit nonsensical as introductions go, but bear with me, please.

I thought that being disabled was going to be mostly about the physical aspects, and yes there is a lot of that: all the handles around the house, including on my bed, are testament to that.

But for me the hardest bit of being disabled is the exhaustion. Everything takes so much more effort when your body doesn’t work properly. I wake up in the morning, have a shower, have some breakfast, do my meds, do mum’s meds, and by then I’m exhausted but still have the whole rest of the day to go.

Likewise with mum’s dementia: I expected the main difficulty to be mum forgetting things. This is true and horribly upsetting for us both when mum can’t remember my late sister’s name (somehow I find that worse than when mum forgets my name, I suppose because Jenny isn’t around to remind mum herself).

What I wasn’t expecting was the distorted thinking, which leads to absurd (to me) conversations like:

• “It’s on top of the CD rack,” I say.
• “This?” says mum, pointing at the Christmas tree.
• “No, the CD rack. The thing with CDs in.”
• “This?” says mum, pointing at the CD rack.
• “Yes! It’s on top of that,” I say encouragingly.
• “This?” says mum, pointing to a bauble on the Christmas tree.
• “No!” I say, more sharply than I intend, “on the CD rack. You were literally just pointing at it!”
• “This?” says mum, pointing to a different bauble on the Christmas tree.

🤦‍♂️🤦‍♂️🤦‍♂️

I was expecting the hardest bit of being a carer to be… actually I don’t know what I expected. In reality, what I’m finding the hardest is that I can’t just not.

After showering, all I really wanted was to do nothing very much, but the arrival of a Christmas card from our next door neighbours reminded mum that we (by which she of course means me) need to write and send our own cards. So I got up from my bed, and ordered my meds to cover the Christmas period, did a meal plan and ordered groceries, arranged transport to a hospital appointment for mum next week, and did various other bits I can’t quite remember now.

I didn’t write any Christmas cards. Oops. 😳

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For dinner I intended to do a Thai-style curry, only to discover we didn’t have the necessary spices. After a bit of faffing around, I found a Simply Cook kit for nasi goreng, so that’s what we had. Mum said it was “OK, really”. I thought it was really good and went back for seconds, which wiped out the leftovers that should have been my lunch tomorrow. Oops again.

I was expecting the hardest part of blogging to be finding an audience for my daily blathering, but that’s taking care of itself: in November over 2000 people gave me a few minutes of their time. Thank you.

In reality, the hardest part is that I can’t be bothered to get my laptop out to write a post every day, so I do it on my phone. That, of course, is not good for human physiology, and I’ve got an RSI in my wrist. (Tbh, playing so many games on my phone doesn’t help.)

And so there I will have to stop, because my arm hurts. Goodnight, everyone.