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. 

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.

What's broken cannot be unbroken, but I like to think a heart can mend

Today I was walking past a local cafe feeling happy and light of heart. I saw someone I knew sitting by the window; we nodded to each other and smiled, and automatically I smiled too at the person he was with, a proper, open-hearted glad to be alive and good to know you smile, and she did the same - except that it was someone who'd fallen out with me some time ago and we have not spoken to each other since. We both smiled at each other before we realised who it was. In that instant, though, it felt like things were healed. We might not ever be friends, but something just mended in a glance, like some invisible clicking back into place.

Nick's fifth remote control has broken and we are waiting for a replacement to be sent out. It's been a week now. The TV is now out of warranty but we're getting the remote free as a goodwill gesture so I can't make too much of a fuss, but until it arrives he can only watch one channel on his television with an annoying error signal flashing on and off which would do my head in after two seconds but he seems to be able to ignore. I curse the day we bought the bloody smart TV, it's been nothing but trouble, but it's also a lifeline for him.
I did buy a universal remote when we first realised that the TV remote was so vulnerable to being chucked around and bashed, but we've never been able to match it to the television. The OT has been trying to install a bionic arm that attaches to Nick's table to grip the remote more securely, and she brought along her technical team to help, and they couldn't get it to match so I know it's not just me - it's a combination of annoying so-called smart TV and the Nick factor.

Meanwhile, the big comfortable black chair that Nick sits in all day has broken. I got a text from him yesterday to say that a wheel had fallen off - and it surely has. The chair is capsized in the corner like some poor broken creature. The company who fitted it say they can't do any repairs until they get a referral from the NHS, as although they supplied the chair, it was the NHS physio who made the purchase and therefore it's up to her to instigate a repair order. What, even in dire emergency? But they're adamant that they need the physio's sign off but she won't be at work again until the end of next week and emergency or no, there seems to be no Plan B.
Thankfully we still have the old orthopaedic chair I got for peanuts on the Abbeydale Road, and Nick can sit in it reasonably comfortably, but not for too long before his body starts rebelling. He is playing musical chairs with that and the armchair supplied by the council, which has always been too low for him to easily get out of.
Two of his absolute basics have disintegrated, and I feel so helpless for him. It's like some kind of horrible party game where all his favourite things are taken away, one by one. Still, we keep cheerful. He's really looking forward to Christmas and I am planning some treats for him. Tonight we're going to hear a friend's choir, and we'll have some Christmas lunches. If you're reading this and you're within shouting distance, get in touch, we'll be here and we're up for some festive jollies.

But thinking back to seeing the woman I had fallen out with; even though Nick's special things are broken and it's frustrating and sad for him, he's in good spirits. The breakages are constant; it's one of the features of Huntington's that you might not hear so much about but for us it's non stop, and it's hard to anticipate what's going to go next, or the difficulty level of getting it replaced or repaired.
If you or I broke our glasses or the car wouldn't start, it would be annoying and inconvenient but we'd manage; for Nick, he has so few resources that if his TV and hearing aids and radio and chair stop working and we're not there, then he's effectively in solitary confinement.  It's amazing then that he is so phlegmatic about it all.
In his pyramid of human needs, physical comfort and company from the TV are so important, but the really essential things are his human relationships and the cuddles he gets with his cat. These keep him going. And having such a short term memory that he can't remember enough to bear a grudge, so he stays open hearted like a child. I think as the silly season races up ahead, that it's probably a really good way to be.

Retrograde something

If your life is in any way affected by HD you won’t be surprised to hear that the dramas continued yesterday, and coming from an entirely unexpected source. Apparently it’s planetary.

I have a long working day on a Monday so I’m out all day and pretty much helpless if anything goes wrong. Late morning I got a text from Nick.

“They have just taken my wheelchair away Sis”

Eh??? I texted him back.

“Nick. What do you mean? Who is “they”??”

No answer.

Eventually another series of painfully spelled out texts tells me that “they” had rung the buzzer and he had let them in, despite specific instructions not to after Sunday’s incident with Vic.

Whoever it was had simply told him they had come to collect the wheelchair, and Nick let them take it away. He doesn’t question anything and it wouldn’t occur to him to put up any resistance. Like taking candy from a baby. It makes me wince.

I put on my Sherlock deerstalker and got on the phone to the most likely suspects: the hospital mobility service who had issued the electric wheelchair in the first place, the local distributor who provide and service the equipment, and the Red Cross.

They all had Nick on file but all confirmed that they had not made any collections from that address, there was no reason why they would try to get it back, and that anyway they would never do that without prior consent or arrangement. Everyone was very helpful but adamant that it was nothing to do with them.

Finally at home that evening, I discovered that the mystery collector had taken the chair but left behind the cushion and half of the power pack, so it would be a fat lot of good to anyone.

Did the person have a uniform? Or any I. D.? asked my son later. Nick wasn’t sure. He didn’t think so. Oh dear. 

The only possible conclusion was that he had been scammed.  He is so vulnerable. You never know who is watching, and we have already established that there are some nutters in the building. Horrible, unsettling thought.

Cut to today, and I suddenly had a wild but inspired guess. I called the big Red Cross warehouse in the back end of Rotherham. Just in case. What do you know, it turned out that they had it. Combination of a clerical error suggesting that the loan we’d had months ago and returned in August, was still outstanding, and an over-enthusiastic but dim volunteer who had taken it upon themselves to round it up. I was too grateful to make a fuss.

One of their lovely, kind regular drivers phoned me to say that he was dropping it off and had left it outside Nick’s front door and all was well.

So that was Monday’s drama. Meanwhile, the key safe is still on its last legs but a replacement will be fixed next week (naturally it turns out to be a discontinued model but some kind soul at the fitters has searched in their cellar and found a spare), the bedroom radiator is still hanging off the wall and the repairers have not got back to us yet, and Nick has found the hearing aid he lost on Sunday but lost the other one and it has not turned up yet. Which means that he hardly hear a thing and has been turning the TV up, and although he has finally understood to keep the volume low, I fear that it will just inflame Vic to the point of no return. He was at it again last night, threatening the carers and my husband and banging on the ceiling, and the housing officer has not even acknowledged my messages let alone respond. The police have been in touch but explained that they’ve had a really difficult weekend with bonfire and firework activity so we won’t see them til later this evening. All we can do right now is keep calm and carry on, as usual. Well, after a fashion.

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.

Kittens on the internet

Funny, when I lived in Scotland there was an expression “mortalled”, to mean that someone was really drunk. It seemed like quite a sweet turn of phrase to me, without taking in any of the real implications; now the idea of getting mortalled makes me do a whole body shudder.

Yesterday I took Nick to the hospital to get his hearing aids repaired – a simple thing, but something about the miserable day, cold and bucketing with rain and having to splosh into a huge puddle just getting him out of the car, gave me the chills.

An emergency ambulance pulled up beside us and began to unload a scared, poorly woman on a stretcher. All around us were people hobbling, being wheeled, bandaged and scarred, pale smokers outside in dressing gowns and drips, everyone looking ill and, well, mortal.

Hospitals don’t usually affect me like this but it was like seeing the world through a different lens, a horrific one that I couldn’t shake off. How bloody fragile we are, that’s all I could see. And, for the first time, one day this will be me.

I’ve not been feeling very well this week, with stomach pains and back ache. Unusual for me. Something is not at all right. I’m generally strong as a Taurean ox and not given to imagining hideous illness every time I have a cold - although I did go through a childhood phase of acute hypochondria, thanks to obsessive reading of a Victorian medical encyclopaedia (quinsy, diptheria and palpitations in the space of a fortnight. My mum got rid of the book after she’d been about to call an ambulance then realized my “appendicitis” was on the wrong side. )

But this time, something is definitely not feeling right.

I’ve not been so well this year and apart from getting older, it doesn’t take much to guess why.  Tinnitus, weird Raynaud’s type frozen fingers, feeling exhausted and dizzy. The stress of the last few weeks with ongoing neighbour problems and the man upstairs physically threatening Nick, and our attempts to get some support, has affected us all. With each day that I beg for help and no-one calls back, the acid bores another hole in my stomach and no amount of meditation or lovely spring blossoms or kittens on the internet seems to soothe the anxiety away. 

And a friend died at the weekend – cancer. She was super-healthy, it just came out of the blue. It makes you stop and wonder.

It makes you face your own mortality.

What if there were really something wrong with me? But there can’t be. Who would look after Nick? There is Simon, and the carers who are gradually gaining confidence and my trust, and a handful of helpful friends and health professionals, but it’s me who pulls it all together.

I simply can’t afford to get ill. Trouble is, being a carer affects your health. Have you seen the statistics? They’re as scary as any Victorian medical manual.

But if kittens on the internet and walking in spring blossom help a bit, and taking Nick out to the countryside for a blast of nature and the heavenly hillsides, then that’s what I’ve got to do. I think perhaps it’s my quest in what is now my 60^th year  - to keep well, mentally and physically, because one of us can’t and the other one has got to.

Bad Thoughts

What has happened to my life?

There is no time for me anymore and if I do get a break, I'm too exhausted to know what to do with it

Am I even allowed a life of my own?

I’m not coping

I’m lonely and so, so tired

Why can’t anyone see how much we’re struggling?

Why do all the services rely on me to sort it all out?

There is no-one to help

There is no-one else who can do this though

Whatever I do, it’s not enough but I am broken just trying to keep on top of things

It can’t carry on like this, but I can't see any end to it
I can't do enough to make it all right for him, I am failing him

I feel so guilty

Sometimes I hate Nick and I wish he wasn't there 

I am a horrible person to have these thoughts 
Shut up and keep going.

Memo for a new month

Is it possible to sack your care providers? I wonder as I send off another Howler. Actually I have stopped bothering with Howlers. It’s all short, sharp and to the point. The service is unfit for purpose.

On Monday I made another complaint after I went in and there was no lunch left out for Nick at all. There was a slab of home-made quiche in the fridge (not mine, I hasten to add but some that my kind neighbour had brought round) and in the communications book I had asked lunchtime carers to put it in a bowl with some potato salad.

I don’t know why this didn’t work but it didn’t.  I knew that the member of staff who’d been in at lunchtime was the one who’d been there with the manager the night before and that the manager had been explaining to him how the book worked, but it didn’t seem to have made any difference.  It’s not just the book, it’s in the care plan to give Nick something to eat – what is going wrong?

I have been trying to keep really calm and neutral when talking with Nick about the carers because I want him to make his own mind up and not just say what he thinks I want to hear. These days it can take him a while to vocalise how he feels about something. 

If he likes them then it doesn’t matter so much about the food or the unlocked doors or the bad timings, I say to myself. But I’ve yet to see any real empathy or attempt at a rapport, especially when he says that the person in question – the one who came in and didn’t leave any lunch – does not listen or try to understand what Nick asks, just does his own thing regardless.

Over the last week in particular, the whole picture has driven me almost mad. It’s been harder and harder to lift my head above the waters and find some point of equilibrium. I feel like just sinking to the bottom of the ocean, curled up like an anemone. But that just won’t do. For a start, who would look out for Nick then?

So I have to find some balance. I long for comfort, reassurance but not the soppy kind, more the vitamin shot that helps you carry on way past what you thought was your burn out point. To believe that I am worth it, as they say in the ads. Some Nourishment for the soul in radical times! That’s what is needed.

By last night things seemed to be settling down a wee bit and I think they are beginning to understand the score. I found a note saying, "Please bear with us as we are only getting to know Nick" which touched my heart and made me feel a bit bad about making such a fuss. Then I thought, hang on! They've been coming here for two months. That's actually quite a long time in social care. Long enough to have understood where the bloody bin bags are by now.

But on Monday I just felt fed up. I don’t feel 100% safe leaving Nick’s care with these guys. 

I phoned social services and left a message telling them I was extremely unhappy with his care provision. That there were some serious safety issues needing immediate attention.

There wasn’t anyone picking up but I got a recorded message saying they were very busy helping other callers but someone would get back to me within the hour. I think you might guess the outcome of that one. I called them again a bit later, and then again first thing yesterday morning. 

It's Thursday now, and a new month. I've still heard nothing back. Maybe their quota for responding to people in January was full. Maybe safety issues are not a priority at the moment. Maybe I am already on some secret file labelled "Complaining Madwoman." 

And maybe - yes, maybe - they are ridiculously busy and overstretched. But it's their job. To uphold the rights of the individual and protect the vulnerable. It surely shouldn't just be down to me and other carers like myself to fight for these things?