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. 

Mary Poppins Returns

Is it possible to come back from holiday as a carer and not walk into some kind of slapstick disaster scenario, the kind where you innocently open the front door and a huge tidal wave of dirty water bursts through and knocks you over? I wonder, as I sit here wading through a towering pile of paperwork and things still undealt with to chase.    

Actually, apart from the admin shit storm it hasn’t been too bad. While we were away, Nick was so well looked after by Helen and a wonderful dream team of friends, that in some ways I think he barely noticed we’d gone. There were a few blips but nothing major.

My A-Z list of contacts and contingencies stretched over three pages and spanned the main areas that someone could reasonably expect to have to deal with in my absence. I’m not sure that anyone even looked at it, which is probably a good thing. Things ticked along just fine and they didn’t need to.

Of course, that was lucky. I had spent the fortnight before going away making sure that every little thing I could possibly think of was covered, and there was a lot – financial juggling to make sure Nick had enough cash and that bills could be paid while I was away, medications review, hearing aid repair, continence assessment, OT and wheelchair update, repairing the broken loo, getting in touch with police and housing and social worker about ongoing harassment by the upstairs neighbour (he has continued to tape ill-written hate notes onto Nick’s door every day for the last month, but mercifully didn’t actually attack anyone. I’m almost beginning to see the notice writing as his hobby.)

So everything was fine and although I did return to a couple of minor annoyances – nobody had changed the cat litter in two weeks and I arrived to find Nick sitting in a stuffy, stinking room with flies buzzing around his table, because the (paid) carer who was supposed to do it had not turned up – apart from that, nothing untoward, and he was happy and nurtured and safe. 

“When are you going away again?” said Helen jokingly but I actually felt that it would be possible. 

I can’t thank her and the other friends enough for that, and even the usual carers who carried on doing their normal routine perfectly well without me there, even if a few things got left undone without my constant tweaking and nagging.

And it did make me wonder – all the stuff I do, the never-ending to do list and phone calls and trouble shooting – is it all in my imagination and do I make a rod for my own back most of the time?

But then, all the letters about benefits and health appointments and missed payments and PiP assessments and insurance and utilities and you bloody name it, were all waiting for me to deal with on my return and they are certainly not imaginary, I only wish they were. 

And last night I popped in with some food for Nick and found two carers standing outside the flat looking fazed. Between them they had managed to take the key out of the keysafe and drop it down the drain a few feet away. Now they didn’t know what to do.

“Do you have gloves with you?” Carers nearly always carry gloves.

So armed with latex, I climbed over the fence around the little garden area and knelt down amongst the weeds to prise off the drain cover and yep, there was the pink key fob glinting down there in the water. Not too deep – I fished it out and wiped the muck off on the grass. The carers looked astonished. I genuinely don’t know what they would have done, but chances are that Nick would not have got his supper.

Then we went inside and I put Nick’s tablecloth to rights as it was sliding halfway off the table onto the floor, and in the process discovered the hearing aid that had been lost for the last week and that no one had been able to find. And found some new batteries to put in the clock that is so old it doesn’t even tell the time properly but is an important little talisman for Nick to reach out and touch periodically on his table.

I felt a bit like superwoman, putting everything to rights in the blink of an eye, or maybe Mary Poppins magically restoring order in the room, but it was just luck really. And the eagle-eye, 360 degree overview that perhaps only the primary carer ever really has; the person who’s there every day in all weathers, dealing with every aspect of the care from A to Z and back again. No-one is indispensible really, but that eagle view can take a lifetime to acquire, just knowing that person so well, understanding their quirks, anticipating their discomforts and getting a feel for what they need but can’t find the words to tell you. 

On the other hand, I know I must have blind spots just because I know Nick so well that maybe sometimes I don’t notice the obvious. So it’s really good to know that there are other people, like Helen, involved and getting their own feel for his well-being.

But, “It’s very good to have you back, Sis”, said Nick. And it’s good to be back.

This is often a thankless job and a frustrating one, and goodness knows the admin is enough to drive you halfway round the bend, but for the times I can walk into the room and be Mary Poppins for my bro, it’s all worth it.

It’s giving me the pip

That’s rather an old fashioned expression now isn’t it? It means, to irritate exasperate or annoy.* 

*Look at this wonderful link, which, if it’s new to you, will explain all.

Oh, those people at the DWP knew what they were doing. I bet there were public school boys involved who’d read their PG Wodehouse and were having a little private snigger at the connotations, the nuances of which us plebs wouldn’t ever understand.

Well, I have thoroughly got the pip.

There’s another big stack of its paperwork lying on my desk and it seems so unfair.

We had finally got the letter about transferring Nick’s DLA to PiP and I duly filled in the Work Capability Assessment form, being very clear about the extent of his impairment. Also, names and contact details of all the various professionals involved in his care, and 30 pages of supporting evidence including his CHC assessment done at New Year. My printer had broken so I went to the library to make the copies, and write Nick’s National Insurance number on each side of every page. Just doing that bit and checking it all took over half an hour. Then I went to the Post Office and posted it off.

Job done, I thought.

On Thursday (admittedly a quick turn around) I got a new application form for PiP, this time addressed to me. I couldn’t understand why. It was obviously a different form and generated from the previous one, but why? What part of “diagnosed with Huntington’s Disease in 2010, progressive condition, cannot dress, wash or feed himself, acute dysphasia and cognitive impairment” had not been not quite clear?

The questions were almost identical to the previous form, asking the same things about what can you / can’t you do for yourself.  I felt very anxious about this and why they were asking the same things again, as if to try to catch us out – as if Nick were just pretending to have Huntington’s Disease, you know, just for a laugh and to con a few quid out of the public purse.

The first time Nick applied for DLA, ten years ago when his symptoms were too visible to ignore, when he had been sacked from his job because he kept dropping things and he had been told he was no longer fit to drive, he was turned down.

His Huntington’s advisor in the north east appealed and this time won by a couple of points.

Not because he had been diagnosed with a life limiting progressive illness and was suffering from panic attacks, acute disorientation and stress incontinence, but because he was deaf in one ear and had to wear a hearing aid. Give me strength! He got his DLA, though. And a Blue Badge. 

Back at my desk, May 2019, I kept circling this new lot of paperwork. Eventually the penny dropped that this is Part 2 of the application, the Daily Activities Assessment to establish the extent of Nick’s support needs. It never occurred to me to look this up online, I had just thought that you made the application and then someone would get back to us with a yay or nay. Goodness, how naïve.

The damn thing is sitting on my desk and I will just have to woman up and fill it in. 

Safina, the advice worker at our local Carers’ Centre, gave me a crib sheet of the points system (“Cannot stand and walk unaided more than 20 metres – 12 points”) and it is immediately apparent that Nick will score highly on all counts.

What grieves me though, apart from the exasperation and annoyance of having to spend another chunk of my time going through all this again and gathering the bloody supporting information all over again (yes, they want that too) is that it’s always time I could be spending with Nick, being with him rather than closeted up somewhere I can concentrate doing this for him. He’s oblivious of course, I’ve told him that his benefits are changing and I’m having to apply for the new version of DLA but he doesn’t really retain the information or understand. 

Just have to suck it up and fill the form.  One of my most hated tasks. I’m a right- brain intuitive with "unusual" handwriting. Some people have the neat and orderly form-filling gene, but me, no. It’s a painful chore. And that’s me with two degrees! How must it be for someone not confident with their literacy, struggling with an impairment, trying to do it for themselves?

And then underlying all that is the actual content of the questions. Every single part of it only highlights exactly what Nick cannot do and will never do again. Leave the house unaided. Walk 50 yards. Prepare a simple meal. Make a budgeting decision. I know all these things because I see them every day but seeing it in such quantitative cold hard print makes it very real and only adds to the cruelty of this horrible illness. But there we are. All I can hope for is that he gets the award without too many further hoops to jump, and that someone who reads it breaks out of their Bot mould for a few minutes and learns a little bit about what it really means to be living with Huntington’s.

My Aim is True

It felt especially hard to leave Nick this time. I’ve been up to London to look at the Queen (no, not really) for three whole days and nights and saying goodbye to him on Sunday was a wrench. I was sure he’d be OK – he has the carers, for all their lackadaisicalness, and Simon was going to look in – but the rest of the time he would be on his own and increasingly I fear for his safety.

Also – it’s a long day, as he once told me so poignantly when we talked about his drinking. When your world has shrunk so small and you can do so little for yourself, what else are you going to do to help the hours pass?

We’ve been over this so many times. He can’t live with us because we haven’t got the space or anything like the possibility of adaptations; we’ve got too many stairs and steps in this crazy ramshackle Bohemian house. He wanted to be independent, anyway. But that was before the illness got so much worse, and now independence is more of a vague concept than a practical reality.  At least he’s in a place he calls his own, with no one else changing the channel on the TV or telling him what time to go to bed.

And I need my own life. Juggling like this practically kills me sometimes and I forget how much effort it takes just to run both of our lives, after a fashion. If I don’t get away now and then – to walk, to swim, a little trip to see friends or just be at home with my family, then my batteries get too run down to be 100% there for Nick.

But it’s hard to leave him. I just don’t like leaving him on his own, so vulnerable.

Just walking to the loo and back is getting so much harder for him, his odd unrhythmic shuffling gait so much more jerky and unsteady. He comes back with a damp patch all down one leg and I know there’ll be a puddle on the floor. Unlike the song, his aim is not at all true. Really need to call the continence people again to ask for advice – I’ve been told that they can supply a kind of padded jockey short and I did flag this up a couple of months ago but no-one has been back to us yet. It’s on the to-do list for today. Likewise calling our old friends the council repairs team about the bathroom radiator. Nick leans on it for support whenever he staggers to the loo, so It’s coming off the wall again.

How to put all this in the PiP application form, which asks for as much information from as many providers as possible? As usual, I’ll also send a bunch of HDA information leaflets explaining the complexities and horrors of the illness. So many of these that it won’t all fit in one leaflet and there are several ones covering just some of the symptoms and issues involved. But even these don’t address the ongoing day-to-day crises and concerns.

Nick doesn’t really understand what’s happening when I’m sitting at his table, cursing under my breath as I fill out forms like this or wrestle with his online banking. His DLA payment is still coming in but has suddenly moved to a week later than it had always been, so he is out of pocket and I’ll have to take some money out of his savings to cover this week’s standing orders. 

I tell him it’s fine to listen to the radio or look at the paper as usual but since I’m here he wants to have his chair moved so he can see me, even if he can’t quite process what I’m doing, and he sits uncomfortably, getting twitchier as he knows something is happening that he can’t quite grasp.  

I explain again about the PiP but his short term memory can’t hold on to the what’s and why’s, and I have to play down any mention of anything changing as that makes him too anxious. He twitches and keeps eyeing me nervously as I sit with the laptop at his padded table. It’s not exactly quality time in its ideal sense.

However, at least when I’m doing all these tiresome tasks we are at least in the room together and he knows I’m here for love. Apart from filing this wretched form in and surreptitiously googling incontinence shorts, I’m not sure what else I can offer.

Spoke Too Soon

Here comes the rain again…the rain of meteorites that seem to pick their moments and shower down all at once on the day you decided to leave the house without an umbrella.

So, spoke too soon about breathing space. Really, what was I thinking?

The sodding TV has stopped working again. Nick has broken a fifth, or is it sixth remote control, and now can’t even switch the television on at the plug.

Like everything else, it’s just not Huntington’s proof. Simon spent the whole evening fiddling with it but neither of us are technicians and the manufacturers in the call centre are only able to do so much of a diagnostic from a distance. Is it worth just throwing money at it and buying a new television altogether, I wondered, and then looked at the prices and felt like crying.

And even if either of us could afford it, I can’t see what difference a new TV would make; of course we could get a cheap television quite easily, even a secondhand one, but no. He wants a smart TV so he can have a wide choice of channels, radio, films, iplayer and most of all Netflix, all the things that brighten up his days.

And smart TVs have software that goes wrong, and can only be operated by remote controls that break when they get thrown on the floor. Why aren’t there any TV repair men any longer, like we had the olden days? The smart TV revolution has changed all that. There don’t seem to be televisions that can be fixed by twiddling a few knobs and switches now, it’s all done now over the phone via a call centre.

The thing is, Nick has nothing else. He likes the newspaper but it takes him a week to read the small tabloid sized i, his powers of concentration are dwindling, and his constant chafing and plucking shreds it to a rag after a couple of days. He can listen to the radio but has to keep the sound down because of Vic, and really he just wants to lose himself in the box set binge and the escape of the moving image.

It’s the mainstay of his life – apart from wine, and actually I’d almost say he’d rather have the television than the wine. Especially Netflix. Whenever Netflix goes down, for various reasons, it seriously affects his mood. He drinks more, he’s low; it might sound like a First World Problem but think about it, he has so little else. 

So we have to sort it out.

In addition to this, we’ve had a letter from the NHS business centre fining Nick £100 + costs for ticking the wrong box for a prescription in September.

Ridiculous! We said. Of course, he’d done no such thing. But the computer said yes he had. I did a bit of investigating and it turned out that a few months ago the District Nurse had alerted the GP about the sore looking cracks in Nick’s fingers. A cream was duly prescribed and delivered, which the carers have been using assiduously (once they realised that it was for his hands, not his bottom) and his fingers are much better.

I had nothing to do with this, and apparently it was the GP who made out the prescription and ticked whichever box on his behalf. The surgery say it wasn’t a GP, it was the pharmacy. The pharmacy say they can’t trace that and it was probably the carers who ticked the box when they collected the meds. No-one can admit accountability, so it’s our problem. So-ree.

I’ve written back to NHS business to explain that it was evidently an error by a medical practitioner and could they please take it up with the GP surgery and pharmacy themselves, but they’re having none of it.

As far as they’re concerned, Nick is liable to a penalty charge for fraudulent behaviour. They expect a written response from Nick himself and won’t even talk to me until I’ve submitted original documents proving my Power of Attorney, and a covering letter signed by a medical professional vouching for my authenticity and for Nick’s lack of capacity. By next week. 

When I think of all the high end fiddling that goes on in the business world, the absolute shambles of Brexit and all the people who are PAID TO DO THEIR JOBS, it seems even more iniquitous to target the vulnerable who are already struggling desperately just to get through each day.

The general opinion is that it doesn’t matter that this was a practitioner error that should surely be dealt with through the system not the patient, it can’t (won’t) be sorted out internally through the NHS and it’s poor Nick who’s liable.

I just have to suck it up and provide the documentation like a good girl and alongside trying to sort out the sodding television, kiss another few hours of my life goodbye and try to wade through all this treacle.

Lament

I don’t often properly moan but today I’m so tired and I’ve just had enough.

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.

Anniversary Reaction

It was my birthday this week. The floor is still covered in bits of pink tissue paper and there is an alarming amount of chocolate and gin on the premises. It’ll come in useful, I’m sure.

Birthdays always make me a bit emotional, amazed and deeply touched to be at the receiving end of so much love and attention (like this year, when I have neglected my friends and been grumpy with my family and it really doesn’t feel deserved). 

I’m a lucky girl.

I’m also aware of time passing and that Nick has now been in Sheffield for a year; he arrived at the beginning of May 2017 and gosh, how much has changed.

It has sometimes seemed that we’d unwittingly won a competition to demonstrate Murphy’s Law, that every possible thing that could go wrong, did go wrong. Benefits and social services stopped, messages lost in cyberspace and the simplest seeming thing lost in translation. Everything, as if he’d vanished like a Jason Bourne by just moving from County Durham to Yorkshire.

I’d spent the six weeks before he moved talking to the local authority, the Jobcentre, social services and telecom company to register a change of address. I’d sent Power of Attorney documents by recorded delivery, had long conversations with officers in various departments and was reassured that the transition would go fairly smoothly. But no. Ohhhhh no.

I started calling it the Nick factor. Even the chain of opticians he’d always used suddenly lost all his details and had no record of any previous service, though his old branch in the north east knew him so well that they’d pull up a seat, get him a drink and replace his glasses three pairs at a time for free because he broke them so often.

Hours on the phone, dozens of dead ends, sending more registered letters and patiently re-scanning documents; meanwhile panicking about money because suddenly he had no income and was ripping though his savings, and panicking about the scale of his drinking, constant chest-pulsing panic because I’d had no idea it was that bad. And at the same time trying to protect Nick from my dismay because only when he came to live here permanently did I understand how much worse his health had become.

And now here we are, and we’ve become acclimatised to the new normal. Nick is living in a lovely flat ten minutes away from us, he feels safe and has settled into a routine that suits him. His various benefits have finally been reinstated (though I say this knowing that PiP may be just around the corner), and with a little care we can manage.

His TV is working and he can watch Netflix to his heart’s content.

We have compromised on the wine so that it’s now a box of lower-alcohol Perry a day rather than the 12% Chardonnay, and, cross fingers, we have just about got his care provision working out at long last.

So we’ve come a long, long way. It’s best not to look back, though.

This time last year, Nick could walk to our house, just round the corner from his old flat, and even to the shop a couple of hundred yards down the road. He could converse by text, make a phone call and pick up the receiver when I rang. He could make himself something to eat and feed the cats. He can’t do any of these things now.

I worried at first that it was laziness, now that he had us running around after him, but I don’t think that’s the real reason, which is simply that he just can’t.

When someone you love has a long-term illness it’s like a living bereavement. You grieve every day for all that has been lost and the pity of it all. You miss that person even while they’re alive. Obviously you don’t sit about wailing like a Victorian widow, you get on with the here and now and enjoy the time you have and find new ways to be together, but it is a fine art.

There are daily stresses and troubles, more than I can count, and every time I think we have come through a particularly bad patch of turbulence and can relax, something else happens. When you care for someone with HD I don't think you ever really relax. But here we are, a year on, and if this tumultuous year has taught me anything, it's that there is no point looking back to the way things used to be, and definitely no point trying to anticipate the future. Better to just try to be here now. It's my birthday week, licence to drink fizz and eat chocolate and the presence is my present. 

An Unexpected Kindness

My heart sank when the upstairs neighbour came round to complain about the noise. It’s happening all over again, I thought.

I invited him in to meet Nick. At least that way, he could see for himself that Nick is not well, and Nick could understand the impact that his loud radio has on other people. The neighbour turned out to have tinnitus like me and gets very affected by external noise. He didn’t want to make a fuss, he said, but it would really help if the volume wasn’t turned up so high that vibrations were buzzing through the ceiling.

I stuck one of my dayglo post-it notes to the wall reminding him to keep it down, and “I will” said Nick, which is his constant saying now – totally meaningless, he says it about the wine (“Please pace yourself, bro”), the carers (“Nick, you must tell them what you want”), the radio, the reminders to check his phone for texts, you name it.

“I will,” he says, like some bridal ceremony on a loop, but even if he thinks he will I know perfectly well that most of the time he won’t. (“I forgot” is the other most popular saying.)

So I have been fretting a bit about the radio as well as all the other stuff I’m worrying about, since both Nick’s physical condition and his mental capacity seem to be deteriorating almost in front of my eyes. The carers are a still a huge worry; some of them have been really keen, reading the daily notes and making sure Nick has his non-slip mats and good grip cutlery to help him eat his beautifully chopped up meals. They have made his bed every time and someone has even been making a stab at the recycling!

Others are just not listening, or not looking. Why did they give him dry toast again this morning when the clear instructions were for two of those sticky malt loaf things that he likes, that the dietician recommended and that were in full view on the kitchen counter? Why was Nick wearing socks with his toes sticking out, bits of last night’s pasta still curling up on the seat of his chair, and a shit smear on his bathroom basin that had been there for three days (I deliberately didn’t do anything about it as I knew someone was coming in to clean today, and I wanted to see if they would notice. Sure enough, they said in their notes that they had thoroughly cleaned bathroom and kitchen, but the shit smear was still there. I felt like putting one of my post-it notes beside it with a big arrow, but in the end I didn’t.

It’s not good enough. It makes it hard to relax. So I feel anxious all the time with that awful infectious dread that has no exact source but just grabs you in the chest and sits there. I know that I can’t sustain this and do the real work of caring for Nick but it’s a real effort to lighten up and switch off, or move into another gear.

But things do give me hope. In the space of a few days, which is often the way, we have had the extremes of understanding and kindness.

One, the business exemption checking service, who wrote a stern letter billing Nick for willful mis-use of a form at the dentist’s. Sorry??

Long story. But to cut it short, Nick’s dear friend Dave from school had been alarmed by the tale of the wobbly teeth. He arranged for Nick to have an appointment with another old school-friend who is now a dentist.

This happened while I was away for a couple of days, so Simon took Nick. He said it was very moving to see the two old friends meeting again after all these years. Nick needed a small filling and had a scale and polish, with a reminder to brush more regularly and stay off the Snickers bars last thing at night. We didn’t think any more of it until this letter arrived.

Apparently Nick had signed the exemption form saying that he received ESA (and therefore did not pay for his treatment) when actually since coming to Sheffield he only gets contribution based ESA as his finances were so tangled that the income related part of it has never been sorted out. Another thing I’m still chasing. So anyway, he should have paid the fee upfront and shouldn't have signed the form. 

Simon didn’t realise – he just assumed that Nick didn’t pay for his treatment – and apart from a few flashes of lucidity, Nick will sign anything put in front of him these days. So that was that, but now, for his perfidious attempt to dodge the system, Nick is being charged a sizeable penalty on top of the actual fee.

I wrote at once to explain that Nick has a serious impairment that affects his ability to process information and of course this was a mistake, our sincere apologies, we will pay the bearer forthwith. But that wasn’t good enough. They replied that we would need to send a letter from a medical professional confirming that the illness in question would have that effect, and one form Nick giving his permission for me to discuss the case on his behalf. As well as prompt payment of the penalty along with weekly interest that was now accruing. If they decided that there was justification enough to waive the penalty then they would perhaps refund it.

Give me strength!

I have sent the proof they asked for and paid the original fee – stuff their penalty! –

and fumed to myself about the extra time it takes up to contact the GP and ask her to write the letter (an email won’t do), and also compose and print out a letter for Nick to sign. Not for the first time, I wish people- organisations, I mean – had a clue about the enormity of work involved for the average carer to just keep the wheels on the road. They genuinely seem to think that we have nothing better to do than gather six different forms of evidence and proof of I.D in hard copy, then send them all first class with recorded delivery.

If only there were some shortcuts for all this admin so that I don’t have to waste another afternoon jumping through other people’s hoops.

And then, just as I was feeling really low and that the milk of human kindness had definitely gone sour, I bumped into Nick’s upstairs neighbour at the paper shop.

“I’m so sorry” he said, “I did some research on your brother’s illness and it’s awful isn’t it? And he’s not going to get any better. Poor chap.”

He asked if there was anything he could do to help. You’ve just done it, I said. You’ve taken an interest – you’ve cared. That means so much.

It means so much that another person gets it, understands a bit about the situation. I realize that maybe there’s something I can do to ease my frustration with all these time-munching organisations. Who knows, it might make a difference and it will make me feel better.

So, every time I have to deal with the council, the benefits agencies, anything official like the dental exemption checking service, I am going to include a leaflet about Huntington’s in the envelope. I’ve started doing this with all my official correspondence. Just so you know, guys!

Burn after reading

“The Cat has left the Building” 

It sounds like a code message between Cold War spies, but I was finally able to text this to Nick’s landlord last night after Simon managed to bundle the poor creature into her basket and whisk her off to be reunited with Nick in their new home.

It took the best part of three days to catch her, and only then because the landlord was anxious to start stripping out the leaking bathroom before the cellar below got completely flooded. It has been like this for weeks but the landlord kindly said he would wait until Nick moved out to start bottoming the whole thing. He has been saintly, considering that this is the third time he’s had to remove the bathroom fixtures to repair broken pipes, and the floor is completely sodden. The poor cat was hiding in the furthest possible corner beneath the bath, crouching on the sodden joists and too frightened to come to our encouraging coos and chicken legs, followed by the terror of men in big boots starting work in there, so it must have been a relief to be captured at last. 

And the expression on my brother’s face to see her safely back, and the purring she made on arrival at last, made the whole thing worthwhile. So all three of them are together in their new home and seem happy to be there.

Behind the scenes it’s a slightly different matter. I remember what a shock I got the first time round when Nick moved here in May, when all the arrangements I had so carefully been setting up for weeks just dropped into a vortex where papers had been lost, information not passed on and all support simply stopped.

I don’t think it’s quite as bad as that now, but there’s an echo.

So this week I have become the Butt-Kicking Battleaxe as one thing after another goes not according to plan.

Housing benefit application lost in translation, can I provide the documentation again. I will need to bring I.D and all the original documents into the council offices for approval. We'd been told a month ago that it was all being processed, but apparently someone had made a mistake and this is not the case.

The key-safe I requested two weeks ago. Written application handed directly to the new housing officer for Nick's area, “mislaid”. Whoops. Thankfully the social worker has pulled out a few stops and organised a temporary one so that the carers don’t have to wake Nick up and get him stumbling to the door to let them in for his morning call. 

The new carers from Care4S (another pseudonym, natch) have yet to prove themselves but don’t impress so far by twice not turning up til 11am to help Nick dress and administer his morning meds, then returning just an hour later to do his lunchtime call. 

One of them has such a phobia of cats that she hardly dares walk through the door in case she sees one of them (and there was only one of them until last night!) and won’t go in the bedroom because what if a cat leaps out from under the bed. She’s supposed to be helping him dress, wash and undress every day this week. In his bedroom. I feel sorry for her but my brother’s needs have to come first. 

It’s clearly not going to work out so I ring the company to voice my concerns.

“He could put the cats in another room when carers arrive” is their advice. No. I don’t think so.

He is severely impaired and cannot do anything of the kind, hence needing care in the first place. And besides, it’s a one bedroom flat! 

It is inappropriate for this carer to be coming here in these circumstances and I will leave it to you to make a different arrangement, I say, repeating myself slowly and firmly in the old broken record stylee.

Broken record doesn’t work with the TV installation company who fail to turn up for the third day running. Aside from wasting hours waiting for them, only to be told at the eleventh hour that they can’t make it today, Nick is terribly disappointed. Like so many housebound people, he relies on the TV as a companion and friend and was really looking forward to one of his special programmes tonight. I am incensed on his behalf and ring the call centre to complain. I had already negotiated a discount to make up for their first two no-shows, by now I think they owe me compensation for lost time as well as an apology. Fat chance. The call centre girl couldn’t care less. I ask to speak to a supervisor. Sorry, the supervisors have left for the night. Well of course they have! I let off steam with a blistering online review of their rubbish service but it doesn’t get Nick’s telly fixed.

Meanwhile a friend texts to tell me about her father who was admitted to hospital after a fall and was later discharged without his clothes, specs, personal papers and very expensive specialist hearing aids. Unfortunately they had all been mislaid. The hospital will look into it but can’t accept responsibility for lost property, it is up to the patient to look after their belongings. She is hopping mad as well as grieving for his helplessness and frailty and I completely understand.

It is immensely tiring as well as tiresome to be fighting all the time to put things right for a loved one who can’t do it for themselves, especially when someone was actually employed and entrusted to organise it properly in the first place.

It makes me so cross that when the TV aerial company or a council officer fail to do their job they can just walk away for the night and still get paid, while family carers have to pick up the pieces in their own time, which is already taken up with so many other duties of care and often when they’re already exhausted. Not paid to do it, doing it for love. In time that is so stretched that it would make your average public servant look like Richard Branson lounging in his Caribbean hideaway in comparison.

And it's the unfairness of it all that gets me in the gut, that someone like Nick who already has so many odds stacked against them should be at the mercy of sheer carelessness and - well, that's just it isn't it - lack of care. I care, and they say that love can move mountains, but it still won't set up a TV aerial or authorise a housing benefit payment. It's back to the to-do list and the phone calls and the begin again, Finnegan. 

It is a long, exasperating business but I guess this too shall pass and it will all come right in the end.