A Small Triumph

It has taken 22 months, six weeks’ worth (at a conservative estimate) of my dedicated admin time, not counting actual meetings or phone calls, possibly two hundred outgoing phone calls, approximately ten hours of Vivaldi’s Four Seasons while I wait on hold, several trees’ worth of paperwork, two sets of original documents lost in the post, three shades greyer of hair, continual and soul gnawing financial juggling every single week, one sense of humour missing presumed dead, and a whole new understanding of the term “Kafka-esque.”

But at long, long last, Nick has had his ESA benefits reinstated. Six brown envelopes arrived in the post yesterday explaining different aspects of the decision. I couldn’t understand any of it and had to ring up again today, and even the DWP advisor admitted that the wording was unclear.

I’d had a number of telephone conversations with a different advisor earlier this week, who told me that he had literally spent two entire days trying to unravel the wild goose trail of Nick’s state benefit provision - suspended, reinstated then suspended again for no apparent reason, since he had left County Durham to live in Sheffield.

He had the kind of croaky Lancashire accent that made him sound more like a favourite DJ for 6 Music than a civil servant so I was inclined to trust him. And Nick has since had a nice arrears payment into his account (even though there is no mention of this in the six letters from the DWP, or the seventh one that came today saying that he needed to send XYZ information by tomorrow, or else) so I was slightly concerned that it might be a blip and would suddenly disappear again. But after the follow up conversation with the girl on the phone today, it does seem to be a genuine rebate of sums owed and the new weekly payment has gone in too. At last. At long blinking last.

Just one thing - Mr 6 Music suggested that if I were to give up claiming Carers' Allowance, Nick would get more money because he would then be eligible for a Severe Disability premium. He can't get this while I am getting the Carers' Allowance. If I stopped, we would both be better off. Can that be right? And if so, how have I not understood this before and why has no-one ever told me? 

I have never been happy about the limitations of Carers' Allowance, which seem incredibly unfair and a deliberate poverty trap for people who are working their butts off and saving the state so many billions. I could stop tomorrow - but I have structured my current working pattern around the limited amount of hours I can work alongside the small weekly allowance, and I'm nervous. 

Can I honestly expect to return to better paid work at my age, having lost so much confidence and lost sight of my previous skills? 

If I were doing project management in the real world on the scale I've been doing for Nick, I'd be earning a six figure salary and I would have status. And staff! But it doesn't translate quite like that into the real world, does it? 

And let's face it, it's not as if I'm going to suddenly stop being a carer. I'll still be spending the same amount of time tending to bro, so would there even be time for more work? 

I need some advice. 

Nevertheless, I have a glimpse of something different, a brightness on the horizon, just being aware that perhaps another way has opened up that wasn't visible before.  

In the meantime, I am going to put all the  fluorescent post-it-note-festooned paperwork from the last 22 months into a file and throw it in the cupboard. Then Nick and I are going out for a slap-up lunch. 

Voice of the Donkey

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.

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!

The Donkey - GK Chesterton