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.

Sunshine and Rain (and a touch of snow)

It’s been a full-on week, and one that I really thought might break me. When you spend the majority of the day, every day, dealing with someone else’s business and never seem to get to the end of it and no time even to check in with yourself, it’s just exhausting. Your brain starts to shut down, dreams forgotten and plans on hold. You feel you have no life. And it’s true. When things hit like this all at once, you have no life – you just have to shut down your ego, you are there to serve.

Especially on weeks like these. As well as the TV and the NHS penalty notice, there has also been a problem with Nick’s benefit payment failing to arrive in his bank account this week, and a warning from his utilities provider that his gas consumption is unprecedently high and they are going to suspend his account. Oh, and his CEA card is about to expire and they need a set of evidence. Lots of emails, lots of phone calls. Nick sits flailing while I try to explain to him what I'm doing.

He has been to the dentist and he's had a haircut. And we’ve seen the neurological specialist too. 
Who was concerned about the severity of Nick’s chorea; he’s on pretty much the highest doses he can be of the Sulpiride and Olanzapine and he’s still unable to keep still, head nodding, arms jerking and legs kicking out like a mule. The specialist decided to try a different medication and has prescribed Tetrabenzine – not instead of, but in addition to all the other tablets he’s taking.

Naturally it’s not just a simple dosage but a trial run of half a tablet a day for two weeks and then gradually scaling up to a larger dose. Nick gets his current meds in a blister pack, compartmentalised for morning, noon and evening meds for each day of the week. This will be separate, administered three times a day by Nick’s carers alongside the tablets in the pack.

I’ve printed out instructions for the carers very clearly and just have to hold my nerve and pray that they can cope with this new development because some of them still can’t seem to read a label on a dish saying “Please give Nick this pasta for lunch”.

There’s a slight risk that the Tetrabenzine will cause a low mood, and actually this is already a big risk with Huntington’s as inevitably it goes hand in hand with a low mood. To put it mildly.

Nick has been taking anti-depressants for the last ten years, since before he was diagnosed, but since moving to Sheffield he has consistently said that he feels happy and loved, and rarely feels down – which is terribly moving to hear, thinking how much his health has deteriorated in that time and how many reasons he could have to feel bad. So we think it’s worth a whirl.

“How will we know if it is affecting his mood?” I asked.

“Oh, you’ll know all right” was the answer. So we’ll watch and wait.

It’s all been an uphill struggle though, exacerbated by the fact that Nick has not had his TV or radio all week and has been sitting, slumped, staring at the wall when we’re not there to chat or take him out. I’ve spent hours on the phone trying to sort out the various technical, financial and bureacratic issues, on hold listening to Vivaldi, Beethoven and easy listening jazz until my ears are ringing. 
On Wednesday I managed to get the TV to come on but could only get one channel  - of all things, Parliament Live. It was the night of the big Brexit vote of confidence / no confidence in the Prime Minister. She'd scraped through and most people had left the building, so there wasn’t much to see. The red seats were empty, just four or five stragglers slumped on the benches in a similar attitude of apathetic despair to Nick, or maybe just dozing. 

“Oh blimey, you won’t want to watch this, Nick!”

“Yes” he said, “I do!”

So for the last three days he’s been sitting watching the Parliament channel instead of his usual diet of Netflix, radio 6 music and the Archers, and it seems to have kept him – well, if not entertained exactly, then occupied. He probably knows more about Brexit now than any living person, except that his short term memory is so bad that he won’t remember any of it.

It's been such a bad week in terms of Nick's movement deterioration, speech slurring, spillages and general loss of understanding that despite last week's lovely birthday, for the first time I have really wondered how much longer he can live on his own. 

But. As the week ends, I decided to have one more go at the television, spent an hour on the help line and, with the help of two patient and skilled virtual technicians, have finally and fixed the software glitch and paired yet another new remote control too. Yessss!! What a triumph. 

I’ve spoken to a proper human being at the DWP who says that Nick’s full benefits will be reinstated next week with a rebate going back to November, and although the NHS business service are intransigent about charging for a prescription that we still can’t trace, they say we don’t have to pay the fine and his exemption certificate is on its way and will cover any future problems.

And this - just when I was feeling most desperate, a dear friend got in touch out of the blue and offered to help with the costs of a new TV. I can’t begin to say how kind that was. 
Not just the thought of a practical solution. It felt like a miracle just to have someone reach out at the point when I felt most alone and unable to put one foot in front of the other or see straight.

We’ll probably struggle on with this one now it’s working again, but I’m feeling braver all the time about asking for help and accepting it.

I’m beginning to think that no-one could do all this without going half crazy, there’s nothing to be ashamed of if sometimes I can’t cope, and that mostly I am doing a good job.

Meanwhile Nick is in Netflix heaven, it’s the weekend, and if just for a short hiatus, I can breathe easier again.

Another Swell Party that was.

Nick’s birthday seemed to come around again very quickly after Christmas.

I was still recovering from a second bout of the horrible flu and still not quite right – weak, exhausted, fuzzy headed and feeling utterly thrown by the smallest thing. Hadn’t spent much time with Nick, not wanting to pass on the lurg.

I’d got his presents already – chocolates, a new clock and some Velcro fastening slippers - but the thought of having to organise a celebration just felt absolutely one step beyond.

The trouble was, Nick had been talking about this year’s birthday since around June last year. I’d been pushing him in his Red Cross wheelchair on one of the first days of the glorious heat-wave, celebrating a perfect summer morning, and he’d started talking about January and the birthday party he wanted to have. Nothing like thinking ahead, I quipped. But for a few weeks, while most people were thinking about ice lollies and sunscreen, Nick was inviting anyone he met to his party – six months in advance.

Well, in the end, most of the people from out of town couldn’t make it so early in the new year and so soon after Christmas. But somehow, despite me not having my eye on the ball and then Simon going down with the flu himself, and despite him not using the phone anymore or ever going out unaccompanied, Nick’s invitations had hit the bulls’ eye and LOTS of people turned up.

Another lesson that sometimes I don’t have to it absolutely all. Admittedly, there wouldn’t have been any food without me, and Simon had heroically staggered to the supermarket and bought a load of drinks. And I had been fielding texts all week about the logistics. But a lot of the actual inviting was down to Nick.

And it was such a lovely evening. Another swell party that was. We couldn’t have wished for more.

One friend had made a fabulous chocolate birthday cake with sparklers on top, another had made a quiche at Nick’s request, everybody brought him presents and cards and he spent the evening surrounded by well-wishers and friends – and surprise guests of honour his ex-wife and children, coming all the way from the north east on a school night. Ok, well that was my doing.

But it all reminded me to keep giving Nick more credit for acting independently, and to give us both more breathing space.

It is so easy to flip into permanent emergency mode when there is constantly so much to be done, and Nick can do so little of it himself, or half the time even understands the need. I know realistically that none of those people would have been there the other night without all the back up that Simon and I give, all the time.

But the flu, not being available or hands on, having to ask for more help, has altered my thinking. 

First of all, Nick still does have an independent life to a higher degree than I might see, even if it is mostly internalised. 

Secondly, I really cannot do it all and the only person who expects me to is me. 

I’m still trying to figure out how other people can help, because many friends have said they’re willing, it’s just that I can’t quite summon up the brain power to put it all together. 

Maybe send out a weekly or fortnightly list of tasks and social spaces, time-tabled to fit in with existing appointments and the carers coming in? It’s worth a try. 

Has anyone else tried this? If you’re a carer yourself, what do you do to get more support when you need it? Please get in touch. I'd really love to know how other people manage. It's not going to get easier. We need to put our heads together and find more breathing space.

A Lesson.

So that was Christmas, as John Lennon sang, and what have I done?

Slept, mostly. Boy, have I slept, like a cat, like a baby, more than I can ever remember sleeping. Sleeping in the afternoon. Turning in early. Waking up at the normal time and then going back to sleep for another two, three hours.

I’ve been ill, though. Proper, knock-you-down-where-you-stand, incapacitating flu, where you just have no choice but to go to bed and stay there.

Thank goodness for everything stopping for Christmas Day and then that sleepy downtime between Christmas and New Year when we hadn’t got much booked in anyway.

It’s been a week now and the aches and whirly bedrooms are abating but I can still feel the virus running through my system, the cough is still hacking out of my lungs and I’m weedy and can’t martial my thoughts two miles ahead the way I usually would.

Simon took care of everything – cooked, entertained, chauffeured, ministered to bro - all the things I would normally do – and the children have been to visit, and he’s had a really cracking Christmas.

His fridge is full of cheese and home-made trifle and he’s been given enough chocolate to last him, ooh at least til the end of the week. I am so grateful.

And relaxed. Sleep is such a healer.

But during my long, fevered Christmas night, so delirious I was hanging upside down out of bed trying to cool my forehead on the tiled fireplace, awful thoughts were pounding through my head and one thing was clear : I can’t keep it together indefinitely the way I have been. Something had to give.

Simon has been beyond spectacular and what I’d do without him I just don’t know, but he still only takes care of the basics. I’m the one who keeps it all ticking over.  And what if it had just been me and bro? This was one time when I couldn’t just stagger through, feeling a bit rough but coping anyway. I couldn’t even sit up.

So yes, I feel that this illness and enforced rest has taught me a lesson: understanding my limits. 

I’ve talked in the past about needing to ask for help more, and here and there people have offered, and some really do help already, with lifts and little socials and just invaluably staying part of the picture.

But I think I've inadvertently deflected other overtures because it is always hard to explain what kind of help we need exactly when the needs can be so amorphous and yet so complex. And you’ve kind of got to know Nick to know what to do. So a lot of the time it is just easier to get on with it all myself. 

But I don’t think I can do that anymore – even with Simon's fantastic back-up, there is too much, it’s too big for us both to deal with on a sustained basis.

When Nick had his service assessment recently, the lovely case manager from the Neuro team put it very well. She said, although Nick appears to be living independently, making his own decisions, we all know that he isn’t really able to do anything without constant intervention on all levels.

So I’ve been thinking. We need more back up, and I need to ask for very specific help and more of it. 

I'm still trying to figure out what could be most useful, but I think it would be social. I'm thinking of a pool of people I might be able to call on, to go in and visit him for a glass of wine (there's no point me saying "for a cup of tea", now, is there?) and a chat, or to discuss what's in the paper with him, or read him a chapter of a book, or take him a rice pudding, or even just pop in to check that everything is running smoothly, just so that I'm not always the absolute first point of contact all the time for everything. 

I don't know quite who they'll be, these good soldiers, but if you're reading this and get a call from me, don't be alarmed - after all, you can always say no. But I need to start opening up the conversation, and it seems as good a resolution for 2019 as any. 

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.

Let Love Rule

It's Carers' Rights Day today and I'm looking back over the past year and what I've learned.
Last year was characterised by panic and emergency. This year we've had our share of emergencies and I've often been overwhelmed, exhausted and frightened, but the hyperventilating midnight panics have worn off and I'm learning to surf the crazy waves like a zen surfer. Patrick Swayze in Point Break, that's me. On a good day, at least.

I've been thinking again about love.
As my panic and desperation to make everything all right recede, there is more room for the simplicity of love.
The love is always there, but lately I'm feeling less resentment, less guilt, and more compassion for Nick, and for myself.
Finding it easier to be present - just hanging out in the room together, spending time. As I get older the concept of "spending" time is interesting and I want to spend it wisely, luxuriously and not let it run through my fingers. Spending time with someone who has a progressive illness makes this particularly apt.

It is really really important to have time out for yourself too, to come back to yourself and re charge your batteries. Loving can't half take it out of you.
Exercise. Humour. Sleep. Friends. Pets. Music. Films, a fabulous book you can escape into, any kind of parallel universe that takes you somewhere else for a while - all these things give you perspective. And nature. Nature is the thing that saves me. And art.

As carers we're all surfing those crazy waves all the time while making it look easy; it's amazing to think how strong and skilled we must be.
What keeps you going when you're looking after someone? And how are you going to celebrate yourself on Carers' Rights Day 2018?

https://www.carersuk.org/
https://carers.org/

Going out. Hooking up.

This week we had the first meeting of a Sheffield support group for families affected by Huntington’s. When I say “we”, six people turned up and only three of us were actually local. And one of the six was Diana, our regional advisor, and another one was a man who we gradually realised had nothing to do with HD at all but had heard me talking on local radio earlier and just rocked up for a cup of tea and the craic.

But hey! You’ve got to start somewhere….

The Salvation Army had given us a cavernous room set out like a lecture theatre with a tea urn at one end and a flip chart at the other. We huddled together at the tea end and chatted, awkwardly at first. Why have we come here and what do we want out of a support group? And are we really in such a minority to want a support group at all?

I can see why people would not want to get involved. Huntington’s is like a tightrope that you walk along precariously, not daring to look down but keeping your eyes on the middle distance (maybe this is a terrible analogy as I have never walked a tightrope and don’t have the slightest intention of doing so.)

The tightrope is also like a perpetual conveyor belt taking you somewhere you don’t want to go. You know what is ahead but you can’t focus on it because you’ve got to stay upright in the here and now on this spot. So in any group of people with HD there is always going to be someone at the next stage along and it’s like seeing your future, not in a good way.

Nick had wanted to come, though, and I guess we’re at the “nothing to lose” stage – he knows he can’t pretend he’s not ill, he’s in a wheelchair and can’t stop moving and his hands and feet bash out of their own accord every few seconds. But this is how it is, and he’s come to terms with that and doesn’t want to hide any more. As a result, he doesn’t get half the stares and comments that he used to. Now, if anything, people are accepting and often gravitate towards him as someone interesting to talk to.

I took him to the theatre yesterday; he had really wanted to go, and I thought it would be a nice thing to do for us both. Which it was – but coloured by the phenomenal strain of sitting beside a person with HD who can’t keep still in their wheelchair, whose wheelchair is creaking and croaking like a ship in a high wind, and moving slowly forwards and downhill on the carpeted slope. I realised that I just hadn’t thought this through at all. He could not get comfortable. With every fidget and shudder the wheelchair would jolt forwards or sideways another few inches, and every few minutes his arm or a foot would lash out and I was terrified he was going to whack the woman on his left.

I was supposed to be on his left but he kept moving away, and so every few minutes I would yank the wheelchair back and vaguely into place. Hanging on to the handles and crossbar with both hands, as if in a hurricane now, it took all my strength. Never mind “Macbeth” on the stage, the real drama was happening right here.

I genuinely thought someone might complain, as happened with the autistic boy recently in the cinema, but everyone was so kind. The ushers were fantastically helpful and when Nick (to my amazement, as the first act finished with me sweating and spent as if it had been me on stage) said he was having a great time and wanted to stay, I asked if we might possibly sit in the box. They were so kind. Nick had to negotiate a couple of steps up there but it meant he had a choice of two seats, the wooden chair in the box or his wheelchair, and we were on our own and not barging into anyone, and the poor people who’d been behind us could have an unrestricted view.

The ushers settled Nick in his new seat while I went back to get our coats and make my apologies, and by the time I got back to him, a woman who’d been right behind us was next to him in the box engaging him in deep conversation. I had thought she’d be really pissed off but she was sweetness itself, telling him about the restoration of the theatre and asking him how he was enjoying the play. Afterwards we had several people smiling and chatting to him almost as if we really were VIPs emerging from the Royal box.

So, I’m glad we did it. I have an ache all down my side and bruised hands and arms from the holding on for dear life, but Nick had a fabulous afternoon and actually so did I, but don’t ask me to do it again any time soon.

It’s the Nick factor though – continual small crises (and sometimes big ones) combined with an unusual charm that seems to draw people in. There is rarely a day without incident (he went to the theatre with one hearing aid as the other one had broken for the third time in a week, what with his flinging it across the table when he takes them out. He has already snapped the robotic arm for the remote control that was replaced yet again two days ago. And at nine o clock last night as I was lying blissfully in a steaming hot bath at home, I got a call on the batphone saying that he had broken his aerial (how???) and couldn’t watch TV.

This is Huntington’s. This is our daily reality, and there are variations on the theme for everyone, but it’s why I feel the need for a support group – just to tell someone, just to have someone else say, yes I know what that’s like. There was someone there at the meeting on Tuesday who didn’t have that with anyone else, and I so felt for him.

So we decided that we would keep meeting, even if it’s just three women and a dog for the time being, and knowing that a lot of people don’t want to be involved because they’re only stepping on to the ladder up to the tightrope and really don’t want to have to face these problems just yet.

We’re going to do some fun stuff. Food seems to be the main theme for the moment, and being around animals, and maybe (God help us) some singing of songs. It’s like the first tentative going-on-a-date where you just need an activity alongside the real business of getting to know each other. 

Get in touch if you want to join us, or if you already belong to a group and have any tips. Just please don’t suggest the theatre – although, having said that, panto season is coming up and perhaps that’s one place where audience participation and a comedy wheelchair will be actively encouraged.  

A Colouring Book for Carers (Geography saved my life)

Geography kind of saved my life last year. Once upon a time it might have been a DJ I guess, but my son is the night clubber of the house these days.

In the first few terrifying weeks of my brother arriving in Sheffield and me realising just how ill he was and how completely reliant on me, I walked around in a state of grief and shock.

One day, absolutely banjaxed by everything and wondering how the hell to go on, I noticed that the local branch of MIND was just opposite Nick’s flat, and I just went in. 

I knew there would be massive waiting lists for counselling and didn’t think I stood a chance, but I just needed to talk to somebody. It was just pure luck that it was across the road from Nick, literally within shouting distance of his front room. 

To my amazement there was a free counselling programme available for carers in their fifties and I could put my name down for it and be seen fairly soon, and in the meantime let’s have a chat and take some details…

Even doing that was helpful, being able to say out loud what was happening and feeling not quite so alone. It’s one of the biggest things for new carers, that utter clobbering of overwhelming emotions  - guilt, fear, rage, exhaustion, sorrow and a love that you don’t know what to do with. It’s no wonder that for most of us in that situation, mental health takes a steep decline. You spend so much time and emotional energy looking after this vulnerable person that it can suck out all your juices until you genuinely feel there is no longer any you at all.

So, cut to the early autumn and I started seeing Olga who I quickly realised was very, very skilful in her work and more to the point, really got me. I spent the first few weeks just crying and ranting but gradually somehow she helped me to see a glimmer of light and hope in the situation. She helped me come back to my own life in between the caring duties, and even though it is a constant juggle, identify things that I love to do and that recharge my batteries. All this helps me to be stronger and more able to care for my brother. 

By the time we finished the 24 sessions (lucky me) I felt like a different person – still clobbered daily by the unexpected and the ongoing grief of this living bereavement, but capable of happiness too, remembering who I am and what I want and just feeling ten times stronger.

I wanted to be an artist – I always have been one, but never really took myself very seriously and it always felt like the life that might have been. But Nick’s situation changed that – seeing how precious is the time we have and what are we waiting for? Why not just follow that crazy dream?

I honestly don’t know how I’ve made time for it, but somehow I have managed to start making art again and this month I’ve got a small exhibition of my illustrations and astonishingly, it feels completely natural and normal.

And I have made A Colouring Book for Carers and would love to share it with you.

A Colouring Book for Carers started life as a leaving present for Olga, but I realised that it might be useful for other people and that I wanted to share it.

I had started drawing some doodles while I waited on the phone during the seemingly endless admin involved in caring for another person, and thought it would be fun to do a “colour yourself calm” style book specifically for carers, with situations we would all recognise. 

It has ended up as a cross between a colouring book and an illustrated self-help guide and I could have made it three times the size, but small is beautiful, hey?

If you would like a copy, it’s available from Airy Fairy in Sheffield while my exhibition is on (throughout November) and soon in other outlets, or contact me for mail order.

The Fine Art of Not Caring

Not caring! Well - I am working on this.

I came back from my holiday feeling so relaxed and laissez faire about everything. it took a while for real life to kick in, so this lovely feeling lasted for a few days, even though quite a variety of new problems immediately raised their ugly little heads. In Nick's world it is a rare day that passes without incident. 

But with the insight of a few days’ worth of stepping back and the world not having ended as a result, I thought, oh well – no point in getting upset about these things.

It felt unfamilar. But I decided that I would let myself off the hook and not try to sort it all out instantly and perfectly.  I would do what I could and not let it derail me.

It was a good, an amazing feeling. It had taken a proper holiday and some physical distance in order to be able to feel like that, and to be so objective.

And some of the things sorted themselves and the others seem to be long drawn out soap opera state of affairs that will not be influenced in the slightest by me getting my knickers in a twist. But then today.…today, it all just got to me. The neighbour, the carers, the door. The Huntington's fall-out.

I shouted at my brother and was arsey with his carers. I think I had good reason for both but I felt really bad about it afterwards and cross with myself.

It took a big stompy walk and some mental self-beating-up and a swim and a glass of wine to get back to some kind of equilibrium, and then I realised this: when you do care for someone, you CARE, in capital letters. It makes it hard to let go, and almost impossible to be objective for very long.

One of the things I learned from my dad is to be nice to people. Those who know me very well might be a bit surprised to hear this, perhaps, but I do try, and it is kind of a default setting for me to have a positive outlook. Kind words cost nothing and I feel better when I'm seeing the good in others and having some kind of positive exchange. 

But becoming a carer made me mean. The constant fighting for basic rights and services; the discovery that asking nicely does not do the trick, but kicking arse often does; the utter frustration of being the only advocate for a helpless person when no-one seems to be listening, or even just doing their job. When even sympathetic, well-wishing people just do not get it unless they have been in your shoes, and every little thing seems to take such a lot of your energy and so much time. 

All this has made me a mean, mean girl with a mean old gnarly knot of fear and resentment and fury that had taken up permanent residence in my stomach - the result of too many emergency call-outs and unforseen fuck ups and me having to manage it all, all of the time. 

Having a few days away from this kind of rebooted my settings and I started the week feeling sunny and expecting only good things. Nothing drastic had happened while I was away and I was clearly not as indispensable as I thought. Great. Surely I could now step back a bit. 

Life of course had other plans.

The thing is, being mean makes you feel sour inside and it's exhausting. Also, it might feel better at the time to kick some arse because God knows some situations deserve it and you need to vent that frustration somehow, but when even being really, really mean does not get results (yes, I'm talking to you, Sheffield City Council), it is better to save your precious energy for the things that light you up and nourish you for the long term. That's what is really needed here.

So no, I'm not on holiday any more and life with Nick is back to its old complexities, but I'm wanting a holiday from mean. I was thinking about what made me so relaxed and happy over the last week, even after the plane touched down on rainy Manchester tarmac and the summer clothes went back in their trunk. 
It wasn't just the total lack of a to-do list, although that has been a blessed thing.
It was something to do with not caring - not that I don't care, or will stop caring about Nick or being his primary carer, of course, but just - not taking it all so personally. 
I can't ever be objective where my brother's concerned, but the twisting sourness in the guts and the arse-kicking attitude hurts both of us. There has got to be a better way. 

I am going to try looking after number one as well and do the things that nourish me so I can look after him as well as I can. And it is also something to do with being kind, being responsible without being nasty or feeling that twist in my gut all the time; seeing that some things will just take their course whether I try to intervene or not, having the courage to step back a little bit, and ultimately caring for the person I love but where the daily annoyances and obstacles and curveballs are concerned, caring but not caring.