Not
had time or head space to write for a while – things keep happening and being
able to sit down to record my thoughts at any kind of leisure has been too much
of a luxury.
But
that’s why I started writing a blog in the first place, because things keep
happening and I needed to keep track. So here we are, midnight, way past my
bedtime on a day when I could happily have gone back to bed first thing this
morning and slept for a week.
Earlier
this week I was interviewed for Radio 4’s Money Box Live programme about the
financial impact of being a carer.
They
asked what I did for Nick and I trotted out a list off the top of my head,
thinking to myself that it sounded like nothing and feeling the usual guilt
that I should be doing more and am not there for him 24/7.
People
often ask if he lives with us and I still feel bad that he doesn’t – even
though our house is just not big enough for the both of us, and when he did
stay with us on first arriving in Sheffield last year, he fell down our stairs
and broke his collarbone within two days.
So no, he doesn’t live with us, but we see him every day and I probably spend at least three or four hours a day dealing with his paperwork, money, shopping, appointments, blah blah blah. But some people spend their entire life doing that for the person they care for; I know an eighty year old who has perhaps two hours off each day if she's lucky, and many live-in carers report a 90 hour week.
What I do for Nick in comparison feels like nothing much - and it feels like an endless mountain.
It's hard to explain how the time just sucks into a vortex when you're looking after someone else like this.
And I simply could not have expected the level of
responsibility and care I would be taking on.
No-one does, I’m sure. It soon
starts to feel normal though, so you take on more, until suddenly you are like
one of those poor Greek donkeys staggering under an impossible weight. I used
to cry when I saw them and try to get their owners to relieve the load. Of
course they would just laugh and pile on another brick. “The donkey doesn’t feel it!”
Now that donkey is me.
Now that donkey is me.
On the radio interview there was only
time to include a small part of my duties, just the tip of the iceberg really,
and of course so much of what you’ll do as a carer is often unquantifiable. But viewed from the outside, I saw that other people really did think it was a lot.
Well, it's all relative (literally so)
But it has made me think. It has made me more proud of myself, and more determined to do a good job for Nick.
But it has made me more angry, and more determined to speak out about carers' rights, keep lobbying for more recognition (and god knows, more financial support) and keep connecting with other people whether they are carers themselves or not. It can be a lonely old business and we need to talk to each other. I might feel like it a lot of the time but I refuse to be an Eeyore. Us donkeys need to stick together - go on with our work but make sure we raise our collective voice, echoing across the hillsides. Let me hear you, brothers and sisters!
