Life After Caring, three years on.

 

Did my last clean this afternoon, posted the keys through the letterbox and walked down that familiar road for the last time. 

After three years of freelancing, taking a variety of part time jobs that eventually mounted up to juggling five at a time, I’m ready for a change. 

When my caring role suddenly ended three years ago, I was 60 and had lost all sense of thinking about a career – all that goes out of the window when you’re the primary carer for a loved one with complex health issues, especially if you’re an older woman who wasn’t on a conventional career ladder in the first place. 

Without a profession to go back to, or any confidence in myself (despite the incredible 360 degree project management skills that carers have to develop) I wasn’t sure what to do next. My Carers’ Allowance finished, and although a pitifully small amount, it was still a regular income. Caring costs, indeed, and after years of propping my brother up financially, I had very little savings to fall back on. 

I‘d need to get a job, but who would want a grieving, hearing-impaired 60 year old who’d been out of the job market for several years, with a metre-long CV but no easily explainable skills? 

 

I was super lucky to meet a friend who needed some help with her cleaning and housekeeping business, just at the exact time I needed some work, so serendipity came to the rescue. Not one of life’s natural-born neatniks, I’d developed cleaning and organising as amazing new super-powers while caring for my brother, because his condition involved a hell of a lot of accidents and spillages. 

I kept working pretty much through the pandemic and continued to have a lot of lucky breaks and some brilliant freelance roles.

But I know lots of people who haven’t been as lucky. Family carers give up so much, and many never really find their feet back into work; in spite of having lots to offer the world, the world doesn’t know how to value their skills. And please don’t suggest paid care-work. It’s not about being too proud or too squeamish: most of us are so burned out when our loved one dies that looking after anyone else is the last thing we can or want to do. 

So many suddenly-ex carers find themselves in this position, recently bereaved and completely out on a limb, not sure who they are or where they fit in, in the world and not of it. And very close to poverty, if not actually there. 

 

That’s part of the reason for me making a change now – after three years of getting by with multi-job juggling, lady luck has smiled on me again and I’m taking on a new full time role and going to work at the Sheffield Carers’ Centre. Where else, really? It’s an organisation that has helped me many times in the past in hours of need, and it's certainly where my heart lies.

It will take a while to learn the role and how best to support unpaid carers in 2022, (especially at a time of recession, NHS on its knees and astronomical heating bills) but I really hope to be able to help – if only as a sympathetic ear at first. 

It feels like a good thing to look forward to this Carers Rights’ Day, and even if that doesn’t affect you or even anyone you’re close to, please just remember this – no-one plans for the role. Whoever you are, you may find yourself needing  friends and family to care for you, or looking after someone you love. It really can happen to anyone, so please, give a thought to unpaid carers today and if you possibly can, add your voice to the lobby for social care to be finally addressed by the government. 

 

 

https://www.carersuk.org/news-and-campaigns/carers-rights-day

 

 

 

 

 

This is Huntington’s.

 

How is it possible for a person who can’t walk more than a few steps or wash and dress himself, to generate so much chaos? 

I ask myself this for the 500^th time.  

I used to call it the Nick factor, the way that if anything could possibly go wrong with almost anything you care to name, it would do. 

Now I wonder if it is just the way things are for anyone with an impairment and their carers, and if, for all the various avenues of support from government and social services and healthcare, life is just not set up for us.
And with complex conditions like Huntington's, there are so many factors - not just the physical symptoms which we all know are horrible and many, but the mental and cognitive and social and financial and all the other knock-ons that simply don't fit so easily into a simple category of "illness".  

And also, with HD there is so little that’s predictable. And it all happens at once. 

And I am on the alert almost every minute of every day and yet never quite prepared.

As is often the way, I came back from a lovely weekend away to a whole deluge of new crises. 

I don't usually wash or dress Nick as it needs two people, but was helping him put on his pyjamas and saw a nasty looking pressure sore on his bottom that the carers have either missed or ignored. 
There’s no record of any concerns in their daily log, and there’s not even the standard issue body map diagram showing which areas to be aware of.

Why the hell has no-one noticed this? It looks like a stage 2 to me, where the skin is broken. This is serious.

His special Omega chair with the inbuilt pressurised seat has been knackered for months so that can’t have helped. Today it gave up the ghost. It just kind of collapsed from under him, he said, and the castor came off, leaving it capsized on the floor like a poor old dinosaur. 
Thank goodness he wasn't hurt. It's the only thing he can easily sit on for long though, and the spare armchair is creaking dangerously with every shudder and kick, only made worse by the fact that he is so uncomfortable there. 

We need to get hold of the physio so she can authorise the manufacturers to come out to do a repair as soon as possible; but when I ring, she's on holiday for the next two weeks. 

And there's a worrying message on Nick's phone from his bank about low funds, and looking at his online banking it transpires that there have been three lots of £98 debited from his account by the council. Whaaaa?!!!? Thanks to his housing benefit and various exemptions, it's supposed to be under a tenner.

I get on the phone and manage to talk to someone who is as confused as me but thinks it might be something to do with a default setting by their computers when Nick’s housing benefit was recently re-assessed. (i.e we got four identical letters saying that as Nick’s circumstances had changed and he had not informed them, they were suspending his housing benefit. I know the ropes by now and apart from a knee-jerk email that I knew no-one would ever reply to, just sucked it up and made the journey to the council offices with a big sheaf of evidence to show that Nick’s circumstances had not changed and here was the proof. A week later it was reinstated and I gave a little cheer.

“But by the way” I had asked the advisors, “this won’t affect his rent will it?”

No, I was told, because he is in credit with his rent payments and the Direct Debit is ticking along as usual. Phew. All good then. 

But apparently not, as some kind of computer / human blip has alerted a default payment and Nick’s weekly direct debit has rocketed up to nearly a hundred quid, with no notification whatsoever.  And no, they can’t refund it at their end. They will send me a form to fill in which will take up to four weeks to process – never mind that he is quite spectacularly in the red right now and all his bill payments are about to bounce.

How can this be happening? I call the social worker for advice. She sends me a link for a crisis payment, because I can’t keep funding Nick for everything, I’m struggling these days to pay my own bills (Carers’ Allowance = 3p an hour according to one of my online friends) and surely the council need to take some responsibility here. An unannounced rent rise of 10 times the agreed rate? 
A bit of researching reveals that the housing benefit department and the rent department are not even both part of the local authority. One of them is a privately contracted company and communications are generated by numerical calculations rather than people and words. 
Holy Moly. It’s not quite Gilead, but we’re definitely in Terry Gilliam Brazil territory. 

Oh, and even though he was supposed to have enough to last the week, Nick has run out of wine, and his left hearing aid isn't working.

There's more, but these are the things I need to deal with most urgently and after two fairly full-on days, they're all sorted. The District Nurse has been to dress and check the sore and supply a blow-up pressure cushion which eases the discomfort of the creaky armchair and the Red Cross emergency repairs team have come to the rescue and reassembled the broken Omega. 
And after four more phone calls I found a mole at the council who told me to call Nick's bank and request an immediate refund under the Direct Debit indemnity clause. And indeed, as the debit agreement was for a stated weekly amount and this wasn't it and there had been no authority to change it, they didn't bat an eyelid and put the money back into his account straight away. 
I've checked the hearing aid and he had somehow, heroically, put in a new battery himself but not had the dexterity to remove the little orange sticker on the back so it wasn't activated. Simple thing to fix.

And I have done an online shop and got more wine. 

So, phew. 

Nick is happy again and much more comfortable; he's got his radio and his chair back and a dressing pad on his bottom. He's over the moon. The nurse will come in again tomorrow and he has money in his account again and he doesn't seem to be struggling to eat quite as badly as he was last week, and just for the rest of today I feel I can breathe a bit easier.

But this is Huntington's. It's not only the awful jerking and spasming and losing the ability to swallow. It's not only the memory loss and the mood changes and the accidents and the super-strength. The addictions and the obsessions and the reckless spending and the dental problems and the over-heating. There are so many threads that all seem to wind and unravel together that it takes your breath away. If you're not careful it can take over your own life, too. 

I sometimes feel a bit guilty for taking time off and just getting out of town, immersing myself in other things – sea air and green spaces and old friends (most of whom have had their own life upsets), and conversations about music and art and love. There I am on the move again when other carers are stuck 24/7 with no respite and Nick can’t leave his flat or lift a spoon to his lips. But these little breaks are like vitamin shots for the soul, powering me up for the return to another onslaught of what the HELL just happened and oh God I didn’t see that coming. This is Huntington's - relentless, unforseen and unpredictable. 

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. 

Biting the hand that feeds, Baby.

I really, really, really need new glasses. If you are as short sighted as me, these don't come cheap, and this has brought on feelings of panic and mutiny, because as a carer, I seem to fall between the cracks for help with the costs.

So let us get this straight.

I am on Carers’ Allowance, which is nearly £10 a week less than JSA, Universal Credit or whatever is currently being rolled out, as they say, in your area. Yet JSA would qualify me for free or heavily discounted optical and dental treatment, and Carers' Allowance does not.

To qualify for Carers’ Allowance in the first place you need to be actively caring for someone for 35 hours or more a week, which considerably more time than someone on JSA is expected to spend looking for work.

True, no sanctions or interviews or mandatory job experience at Poundland for me, or having to prove what I have done every minute of the day to seek gainful employment; although try asking most carers to account for each hour they have spent and everything they have done in a typical week of caring and if they had to log all that to qualify for their weekly payment you would probably break the internet. The whole system would explode! And who at the DWP would have time to read it?

  

In order to be eligible for Carers’ Allowance in the first place, my income had to be under the limit of £116 a week (now £120) for the two months before applying. 

It was a relief in a way to drop some hours as the combination of the four-day week I’d been doing with the sudden addition of 35 hours (at a low estimate) of unexpected brother care, was a killer. 

I was waking up panicking and fighting for breath from the sheer shock of it all. I had become a bona fide carer almost overnight, but could not be officially recognised as such until I stopped earning money.

It felt like a real catch 22 to have to agree to be poorer in order to continue doing a new job that I’d not applied for or expected to be doing with such a high level of responsibility, with no training, and essentially unpaid apart from this small stipend.

But I was glad to have it too, even while the catch 22 was staring me in the face.  If I was going to be doing 35 + hours a week looking after Nick, I might as well get some kind of acknowledgment and regular payment for it, even if I then couldn’t continue to do my job the way I had been or get paid a decent wage.

The absolute maximum you can earn as a carer doing 35+ hours of support, plus working part-time, is £185 a week. Bear in mind that the average weekly wage is £520. According to Paul Lewis the financial broadcaster, when you take into account all the hours worked by the average carer, this is not even approaching minimum wage, with no legal access to earning more.

I understand why you’d need to put a limit on hours worked in addition to your caring role but why the earnings cap? Why can’t you work for sixteen hours at a good rate? 
Unless you’re very lucky with your employer, doing such a relatively small number of hours tends to mean working at minimum wage and even zero contracts.

Why force carers, who are saving the government and NHS approximately £60 billion a year, into badly paid work? It seems particularly cruel.

Why can’t we work smarter for a limited number of hours at a good job that would help support us, the person we care for and our families, and help us from being a burden on the state?

A limit of hours worked AND on earnings is fundamentally a poverty cap and suggests that where this legislation is involved, carers are held in contempt.

  

I was never a high earner apart from (ironically) a short stint doing research at the DWP, and I’m used to living in a fairly low-impact, resourceful style, and have always felt abundant in other ways. 
But these days as a carer I realise I’m earning below the official poverty level and I bet I’m not alone.  

According to a recent interview with Caroline Dinenage, Minister of State for Health and Social Care, there is "no more financial help available" for carers. The government pot is too stretched. 
OK. But why, if carers are condemned to a low income not commensurate with the amount of work they do, are we not at least given help with the costs of dental treatment and glasses? 
Seriously, baby. I can’t be the only carer who is short sighted with astigmatism and English teeth. 

I am allowed a free eye test, yippee, but I could equally have one of those if I pick up the right coupon from the supermarket. And yes, I know there is a low income voucher scheme if you apply to the NHS through form HSC1, but it still feels insulting to make carers jump through yet another sodding hoop to fill in yet another form and justify their existence.  

I mean real help towards the things that actually matter – eyesight, teeth – that can cost a chunk of your money if you are not deemed exempted. Carers need to keep well, and most of us need to drive, (and to be able to see to fill in those endless sodding forms) and eyes and teeth need maintenance especially for the high percentage of older carers. 

Why can’t that be acknowledged with some practical support?

And as for a massage or some physio for my permanently aching back from lugging a wheelchair in and out of the car and a thousand other little daily tribulations, tell me that other carers don’t long for these and I won’t believe you. 
We need to stand up for our rights.

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