On the crisis days when the shit hits the fan and everything goes tits up, there’s an adrenalin rush in trouble shooting. I know I’m good at it – stay calm, do the next thing necessary, keep it all together, keep Nick safe. Do the next thing necessary and then the one after that.
Yesterday was a day like that. The wheelchair didn't come. We waited for hours and they simply didn't show. Nick's Disability Living Allowance has not arrived in his account this week - I don't know why - and he has gone overdrawn and we couldn't pay any of his bills or do him an online shop.
I'll have to lend him some money again. He has lost both his hearing aids though I've searched high and low. And there is a leaking pipe in the bathroom and water all over the floor.
On days like these, no matter how tired I might be already, the need to make things all right for my brother carries me through.
It’s the next day that I fall apart, suddenly feel my knees turning to jelly as I walk up the hill, physically exhausted beyond all reasonable point, mentally fuzzy and if there were a hundred things backing up on my to do list while I was fire-fighting, unable to remember why they were important or care much anymore.
And that’s bad, because those are usually my things - my dreams, my creative ideas, my longings to plant some flowers or finish the half-painted bookcase, get my hair cut or meet a friend or just go to the bloody Post Office to put a stamp on a letter to Canada.
I do some of the easy ones but the rest go back into Life’s Great In-Tray to wait for another day, because right now I’m just too broken and battered.
They say people on their deathbeds regret the things they haven’t done and the opportunities they didn’t take. I am not a martyr, actually I'm a selfish cow. But when you look after someone else, the things you wanted to do and the opportunities go by, because caring has taken all your strength.
Please tell me I’m not the only one who gets like this?
Being a carer means that you always automatically put the other person’s needs first – or, even if you put those needs aside for a short time, it’s still only temporary because their situation is not going to go away and they still depend on you. Everything is dominated by their needs and it’s an absolute no-brainer because they are vulnerable and impaired, and you are not. You have to be their brain, arms and legs.
Yes, you do have to think of your own well-being and keep healthy and sane so that you can carry on for the person who depends on you, but again, it’s only ever a quick battery re-charge before going right back into the fray.
I’m lamenting rather than complaining. Well, maybe complaining a bit. But mainly just saying how it is.
If all this is anyone’s fault, it’s mine for trying to do too much, but I can’t see any other way.
Friends say, please let me help, but most of the really exhausting stuff is administrative; ultimately I am next of kin and phoning the DWP to chase Nick’s DLA payment is down to me.
Trying to juggle his finances so he doesn’t go any further overdrawn is down to me. And so is calling the council repairs service about the leaking pipe in the bathroom. They all want an authorised person to speak on Nick's behalf, and myriad security clearances as if I were trying to steal his identity not report a leak. You need name rank and serial number just to get through to an advisor, so those utterly soul-draining and knackering waits on hold on the phone are down to me.
You wouldn’t think such a little thing could be so tiring but it really is – and I haven’t managed to get through to either of them yet.
Anyway, tomorrow is another day and the to-do list of dreams will still be there, even if it keeps getting fainter. When I feel like this I can see why Nick just chooses to get blotto, but for me it’s going to be another cup of tea.