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. 

Little Big Fears

9am I’ve had to call in a plumber to look at Nick’s toilet, which is tilting at a strange angle with the cistern coming away from the wall. We’ve been here before…at the previous flat, where twice Nick pulled the washbasin off the wall and then dislodged the toilet too in the space of a few weeks.

I recognise the plumber, he's been here before when the wet room was first installed. He thinks it's a simple job but I offer him a hot drink and we have a joke about how he can stomach swigging tea while poking around in somebody's soil pipe.

An hour later, he’s sitting on the floor amidst slabs of dismantled plastic, phoning his gaffer. He can put everything back today and refix it against the wall but it will only be a temporary solution. The whole thing is coming away not just from the wall, but actually parting company from the huge bolts going deep into the floor.  It’s a solid, specialist self-flushing toilet for people with impairments and he installs them all the time but he says he’s never seen anything quite like this.

“It must have taken some force to move them bolts”.

Yeah.

Welcome to our world, I say, standing in the doorway where I notice the handle is also starting to come loose again, the screw heads working their way out like worms after rain.

The plumber has asked his gaffer to call the OT and advises I do too, to make sure she knows this is urgent because it’s only going to hold for a limited time and then the whole thing is going to go. Horrible visions of Nick on the floor, collapsed amongst the ruins of a broken toilet in a pool of piss, or worse.

11.15am The plumber has gone, I’ve left an answering machine message with the OT and I’m drinking coffee with Nick who had slept soundly through all the drilling and clanking. I’ve unearthed some wonderful old photos of us as children and we’re having a giggle at our clothes, woolly balaclavas and cardis knitted by our gran, Nick’s tartan bow-tie (what a thing to do to a child, he was only four) and my gap teeth.

The carers have not yet arrived to give him his shower and breakfast. Yesterday they didn’t turn up at lunchtime at all. Luckily I was around and could nip over and make him a late lunch – 3.30, practically tea – and give him his tablets.

The care agency weren’t sure what had happened. Their timings have been going really off again and I’m worried.

We’re going on holiday in two weeks’ time – me, Simon and Dill, the first holiday we’ve had together in years, an actual, proper holiday - but I don’t know if I can do it. How can I leave him like this? 

His lovely PA has said she’ll look after him and that was really the thing that made me feel able to go for it in the first place, but oh the things that can, and do, go wrong. Today being a fine example.

I'm not being pessimistic. Just, this is how it is. When the carers are late or don’t turn up at all, when another thing suddenly gives under the force of Nick’s super strength, you’ve got to sort it out.

And then the sheer range of minor crises that happen every single day – the lost hearing aids, the hearing loop not working, the fall, the spilled wine that has drowned his phone, the remote control dying, the payment not going through due to insufficient funds, the neighbour banging at the door and swearing at the carers outside – all of these things are just like background music to the daily pattern of Nick’s life. They still have to be dealt with.

It is a big ask for someone else to take on.

Kensington Gore

We went back to the dietician today to check on Nick’s weight and blow me down, not only has he put back all the weight he’d lost before Christmas, he has gained another 20lbs. Actually, more. He weighs over 13 stone now, which is a good four stone heavier than I am. No wonder he is such a bugger to push in the wheelchair.

And no wonder his shorts didn’t do up when we tried them on the other day to go out on our picnic in the nice bank holiday weather. I noticed he was getting a bit of a paunch but just thought it was the result of all the feeding up and that it was better for him to have a bit of extra weight on him – well, the feeding up has clearly done the trick a little too well, especially as Nick is now taking three different fairly heavy duty meds to calm his movements, and they are definitely working. His spasms are much less pronounced and he is sleeping a lot. I don’t really like this, the fact that he is on the super heavy-duty knock-out pills, just like Ma.

But given the choice between the motionless flat-out slumber I see him in now, and the awful constant jerking and flailing and inability to get comfortable anywhere, anytime, ever – I guess that’s the way it has to be. At least his sleep is peaceful. So he isn’t using up anything like as many calories by just being alive. 

We need to keep his weight stable, says the dietician, it’s always better for anyone with HD to have a bit of extra ballast, but that’s a lot of weight to gain in a short time and he needs to be healthy too.

So it’s back to semi skimmed milk instead of full fat, just banana with his porridge rather than cream and honey too, and although he’ll continue to have an extra tea time visit from the carers to make him a milkshake, he’ll just have that now and not the potato cakes or syrup pancakes to go with it. Job done. We have fattened him up like a prize bull. Now to put the brakes on a little.

Actually, I feel the same. After being so ill at Christmas and New Year, and then hurting my back and for two months not being able to exercise or walk for miles the way I normally would, I have gained weight too. I’ve not even been swimming as much. It has made me a bit depressed. I’m annoyed with myself for it, but at the same time, a slice of toast or two is sometimes the biggest comfort. 

Now summer is coming and my back is much better and I want to be able to wear my nice dresses again and fit into my jeans without having to undo the top button.

So we’ll both be watching our weight, which makes me smile really. For the first time in our long and colourful history, I will be my brother’s Diet Buddy.

We always like going to see the dietician as she’s in a health centre in a part of town we don’t have any other reason to go to, and the shops there remind us both of Consett. 

After leaving the clinic we went to the cool charity shop where Nick has always found new clothes, and bought him a pair of light trousers with a drawstring waist ( very handy) and to Poundland for a bucket and washing stuff so the carers can soak his clothes and bedding when he’s had an accident. Happening increasingly frequently although Nick is still either oblivious or not admitting it -  I can’t tell yet. Then we bought a load of food to make some calorie conscious meals to kick off his new regime. Semi skimmed milk, lower fat cheese and houmous, yoghurts… at the counter, paying, Nick suddenly barked at the cashier,

“Where is your toilet?”  Like a six year old, he’d sworn to me that he didn’t need to go when we were back at the health centre. Now suddenly he was desperate. The cashier looked blank. Not the sympathetic type.

Nick, I said, This is Poundland, not a public convenience! We’ll go back to the health centre and use the loo there. It's not far.

The kerbs in that area are not graded so not very good for pushing wheelchairs or prams. When that happens I might normally go round to the next chamfered kerb via the road, but this one is a dual carriageway ring road, the kind where the traffic never stops, so no. I braced myself to heave Nick up the last step onto the pavement, aware even more of his weight now that I knew exactly how heavy he was. It was the first time I had taken him out since I’d hurt my back, too.

I thought I could do it but, “I need the toilet, Sis!,” and he suddenly gave one of his unpredictable backward lurches and his arm flailed out, taking us both a bit off balance, and reader, I couldn’t hold on to him and the wheelchair tipped right over backwards, Nick landing with his legs in the air and his head in the road. I’d had a small bag of shopping over my shoulder and I must have dropped that as I tried to grab him to stop him going over, and all I could see was a smear of red on the black tarmac next to Nick’s head and I screamed.

“PLEASE! Can somebody help us!”

Two women in tabards came over from a café. Together we managed to right Nick and get him sitting up and then somehow, by the grace of God, manoeuvre him back into the chair, which now had a broken handle, one of the brakes snapped clean off by the force of his weight and strength.

“Are you all right, Nick?” I checked frantically for the source of the blood. Realising with relief that a bottle of tomato ketchup was smashed and dripping from my bag. Not blood, but good old Kensington Gore.

“I’m fine” – and he really did seem to be. As we’ve said before, he rolls like a paratrooper. But I felt horror and deep shame to have put him in that position, with his head in the road and cars whizzing past at 40 miles an hour. The bucket was broken,  I’d had it hanging by the handle onto the wheelchair. Our shopping was squished. My hands and knee were grazed where I'd tried to get between brother and hard ground as the chair tipped over. But Nick was fine. Not only that but he had managed not to wee himself, which is almost more than you could say about me under the circumstances.

Anyway, thank goodness we were right next to the health centre. Mission accomplished, toileted, wiped down and checked over, we drove back home and installed Nick in his chair with a drink while I unpacked the remains of the shopping. I made him some lunch. Omelette and mashed veg, followed by banana and ice cream. He yummed it all. 

He insisted that he felt fine and I went back later to check and make sure that he really was, and he was happily watching rugby on TV and asking me to hang up his new trousers. He was also looking forward to trying the low fat yoghurts we’d bought, miraculously unscathed after their adventure, and now washed clean of tomato ketchup and pumpkin soup.

The wonder of the decreased cognitive awareness and poor short-term memory!

Thank all our stars he was OK and no bones broken or any trauma as far as anyone could tell. 

But I was in a state of shock for the rest of the day. Once again, I see that I can't do some things on my own any longer and need to recognise that. But I'm not sure where we go from here. 

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.

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.  

Just another day in Carersville

Someone asked me the other day what exactly my role as a carer for Nick involved, and I muttered something about project management and admin. 

It is hard to explain all the things you do, often a lot of them at once, so I generally don’t even try. Other carers understand, and the rest is probably like trying to explain the minute complexities of your job, or how you manage a dog and a pram and two kids every day on your morning school run. You just get on with it and do it, that’s all.

Some days are relatively incident free, many not. There are constant issues and freak-outs and crises, but it seems to come in cycles. If you can bear to read it, I’d like to tell you about the last 24 hours.

Yesterday, I dropped round to Nick early because I’d done him some shopping the night before and had a bag of groceries and his bank card. Two carers were there, feeding him his porridge, sitting in the gloaming with the curtains closed. Nick was sitting at a strange angle with the castors of his chair unlocked, so with every laborious mouthful he skidded a little further away from the table, and the spoon. The carers were surprised when I mentioned it, but to position him in his chair and lock the castors has only been in the effing care plan since April and I keep coming in after they’ve gone and finding him shooting across the room. Not to mention the porridge all down his jumper.

Meanwhile the cream for his very cracked fingers had arrived. I’d had two long chats with the District Nurse and then the GP about this because Nick has developed some nasty sore looking fissures in his fingertips. Some of them were bleeding, though he says it isn’t sore and he hadn’t noticed. But the nurse and GP agreed it needed some attention – she’s prescribed a cream that the carers can apply twice a day.  I asked these two how it was going. They both looked blank. It turns out that they have been putting the cream on his bottom. His fingers look as sore and gnarly as ever but he’s got a bum like a baby.

Choose your battles, I said to myself between gritted teeth, unpacked the groceries and made a memo to call the DN on Monday.

“Have a nice lunch, Nick, and see you later”

On Saturdays he goes out for lunch with a PA. Just once a week. We had a lovely Welsh lady who used to come, tiny but strong. She didn’t make a squeak about the heavy wheelchair, but since she has left to look after a sick husband, none of the other carers from her agency will touch it. Nick has had different people every week, they come once and then disappear, and I feel increasingly frustrated because it is so important for him to have an outing and some company that isn’t me or Simon. 

He looks forwards to his Saturdays - and it is such  a godsend for me too, to have a break on a Saturday afternoon when I can go for a swim and just unwind and not be worrying about him. But lately it’s not been going well.

Last week he finally saw someone who seemed to be up for staying the distance and we were expecting her again. Nick had been thinking about where he’d like to go. We’ve agreed with the agency that while the weather is still OK, the PA will take him locally in the electric wheelchair to one of the many coffee shops and cafes around here, just minutes away. No worries about the cumbersome chair or getting in and out of the car.

It was a glorious autumn day and I was going to wander into town and have a bit of a Tiki tour, as our NZ rellies say, on the way. Charity shops, maybe see what’s in the market at my favourite fruit & veg stall, just stroll at leisure for once, then meet a friend for a coffee. I was literally picking up my keys when the phone rang…

“It’s Margaret” – one of the PAs who’s previously been to Nick and then said she couldn’t cope. Not the one from last week, after all. 

Margaret was in a flap. She’d been trying to open the key safe for the last 45 minutes and it was jammed. With four care calls a day to Nick, it gets a lot of welly. She couldn’t get in to the building to Nick and of course he doesn’t hear the buzzer or answer his phone. I said I’d be right over.

I opened the doors with my key and we went in to Nick. I could see that Margaret was not keen on taking Nick out, “there isn’t time now” she said, “I’ll just do him a ready meal from the freezer and we’ll stay here.”

Oh no you won’t! I thought. Apart from having spent almost an hour fiddling with the key safe before phoning me – time that Nick has to pay for – he looks forward so much to his outings. He sits in the same place day in, day out, can’t leave the flat without someone taking him, and it is just not fair on him for her to take the easy option.

“How long have you got left”? I say, looking her in the eye.

An hour.

Great! I’ll get the ramp out if you help him on with his shoes, you’ve got plenty of time to go to Hagglers Corner, it’s five minutes away. 

I don’t know where it is she says. I explain, and draw a little map. Nick knows, in theory, where it is, we go often and we went there for lunch just a couple of days ago, but in the heat of the moment his cognitive difficulties get in the way and he’ll forget.

What about the key? She says. Ah, yes, indeed, what about the key. I have a bright idea. You take mine, lock up and put the key through the letterbox when you go, and I’ll stay here to call the emergency key safe people and I’ll use the back door key. (Bonus of having had the locks changed in the summer)

Excellent. I wave them off.

Call the key safe people. Our offices are now closed until Monday. Whaaat? At this point my lip starts to quiver and I start feeling a bit wobbly. My trip into town has receded into the same distant place as my eye test and new glasses and haircut and all the other things I never seem to get time to do, and I text my friend to say I might have to call it off. My friends are used to this. Sometimes it feels like an excuse. I promise you it’s not, in fact even the best of them has no idea how many emergencies and curveballs we actually have. It’s endless. And the crazy thing is, it still takes me by surprise because it is impossible to anticipate. When I saved the emergency call-out number for the key safe company, could I have known that it was office hours only? or that this would happen on a Saturday afternoon? Could I have known that Nick would pull two radiators off his wall? And, Nope, still not fixed. Must chase again. 

Meanwhile, I call the care providers and we agree that later Simon and I will make Nick his dinner, feed him, give him his tablets and get him ready for bed, and they will cancel their call for tonight. They’ll wait to hear from us in the morning before trying to get in to the property to do Nick’s early morning medications.

I’m writing this now having been up since 7am waiting to hear from the Adult Social Care services who are going to fit a temporary keysafe for the carers to use.

I have the spare key, and the arrangement was that I’d get a call around 7.45 and I’ll take the key down to Nick’s to use with the temp keysafe until the other one can be fixed. It’s getting on for 9.30 now – he needs his meds, I’m beginning to fret, better just get down there to him I guess. Except the contact number the repair team will use is my landline…maybe they have already done the job, fixed it, and no-one had told me?

Oh. My husband has just stumbled downstairs blearily holding his mobile. I’ve been waiting by the phone for two hours, carrying landline and mobile to the kitchen and bathroom with me just in case, and for some reason they’ve called him.

If I could just wave a magic wand to make life easier for carers and the people they care for, it would be for clearer communication procedures. So, so often I am waiting by the phone, ringing up, waiting on hold (I know I go on about this a lot but it is such a big part of the problem), chasing chasing chasing, only to find that the issue has been passed to another department who have not got my contact details and are trying to get hold of Nick on the landline that he will tell me later was ringing but that he will never answer. There have been several occasions when the case has been closed because Nick has not replied to messages and no-one has got in touch with me. And then we have to start all over again. Or, the issue has actually been dealt with but again, no-one has told me. It happens all the time and makes me feel utterly powerless. And scared for Nick, because if someone comes into the flat, say to measure the bathroom door, he doesn’t really understand who they are or what they are doing but he lets them get on with it anyway.

                                                

***********

And there’s more.

I got to Nick’s to meet the ASC team with the new keysafe, only to find the old one open on the wall, and Nick’s regular carers in the flat feeding him his porridge. It must have taken some strength, but they had managed to get it working. Then the ASC social workers arrived, had a look and said they would fit the temporary one anyway, just in case. Carers left, and the two women were outside, I had the kettle on to make Nick a coffee while crawling around on the floor looking for his lost hearing aid, when there was loud knocking at the front door. At first I thought it was the social workers coming to say they’d finished, but no, it was Vic. Bright red face to match his t shirt, towering over me in the doorway, calling me a C***.

What did you call me?

You heard, you f***ing stupid C***

What’s the problem, Vic?  
I've had enough of this f***ng muppet and his noise. 
(But there was no noise in the flat. I took Nick's radio away six weeks ago and the TV wasn't on. The only sound was the kettle boiling. And Vic shouting.)
What noise, Vic? 
He moves closer, right into my space. 

F*** off! I’m not F**ing talkjng to you, you f***ing muppet C***

And so on. There wasn’t any reasoning with him and the sheer force of his rage was scary. He kept swearing, jabbing his fingers an inch from my eyes. 

Look Vic, I said, we’ll talk when you’ve calmed down

“I don’t want to talk to you or your f***ing family, I’ve had enough of your f***ing family and that F***ing muppet in there, he’s making me mentally ill, I’m having him…”

…at which point I tried to close the door, but he was stronger and pushed it open. That’s when I got really scared. He was so close, I could feel his breath on my face and smell his sweat, and he is a big man, a big and very angry man. His rage was something you could almost see, pulsating like an electrical current. I genuinely thought he was going to hit me.

I could feel what his fist would be like when it smashed into my face, and was steeling myself in the doorway, trying to stand my ground, with Nick helpless in his chair just a few feet away. If he was going to have Nick, he would have to get to me first.

I told him I was going to call the police and he swore some more but gradually backed off and went back upstairs. Then I locked the door and phoned 101. The social workers had been outside, trying in vain to attach the temporary keysafe to the railings, I don’t know why they couldn’t do it but they couldn’t, and they had heard the shouting. Talking to them I realised I was shaking and just started to cry out of sheer shock. They will log it at once but where does that information go? Nothing has changed since the smashed door in August, and this is just getting out of hand.

So now I’m waiting for a call back from the police. Nick is oblivious. I explained to him what was happening – the key safe, why the two women were there, Vic having a go (I don’t want to scare him but he needed to know why I was upset and calling the police) but all he was really bothered about was whether he has any Mars Bars left in the cupboard and if not could I get him some more. And some tinned fruit.

It’s still only just past midday.

Dealing with Overwhelm

I’m interested to know how other carers deal with overwhelm. The sense that it’s all too big for anyone to handle, let alone you. That it’s all coming at you like a meteor storm and you’re so tired you just want to lie down in the midst of it, sucking your thumb.

Seeing other people get on with their lives while yours is stopped in its tracks, taken over by the needs of a needy person.

Hi-jacked by your love for someone who isn’t ever going to get better. Trying so hard to make it right for them, but getting into fights along the way like a mediaeval knight trying to protect his princess from dragons.

There is so much coming at me at the moment that it’s almost laughable. Where do I start?

Nick’s neighbour is still on the rampage and as well as the smashed door incident there have been three occasions in the last month that I’ve had to call the police. The crazy thing is, there is no noise coming from Nick’s TV or radio anymore as the hearing loop is working and we took his bedside CD player away weeks ago. What exactly is he hearing to upset him so much? Now there is talk of re-housing and an Anti Social Behaviour Order – at the moment just talk though. While the police have been brilliant, the council are dragging their feet.

And Nick’s bathroom door handle is coming off again. Last time this happened, I phoned the council repair team who told me they didn’t class it as a risk, resulting in Nick getting stuck in the bathroom and having to be rescued by emergency services. Need to call them in again, when I can summon up the strength to wait on the phone for forty minutes. 

The carers have taken on Nick’s nutritional needs but the ABC of no-brainer risk assessment seems beyond them. Yesterday I arrived ten minutes after they had left, to find water all over the kitchen floor. It looked as if someone had put the washing machine on the wrong cycle again. Did they not notice, or have any concerns about Nick coming in to get his wine (which he does at very regular intervals) and slipping?

In the bathroom, meanwhile, the bottle of bleach was sitting beside the loo with its top off. Words absolutely fail me. These are adults, supposedly trained in health and safety and the care of vulnerable persons. Paid to do this job. Not very well paid, but paid more than I am to be on their case like this day in, day out.

Our landline is not working. I don’t know why.

And a relative I’ve never met from New Zealand is coming to stay with us for three days. I’m picking him up in an hour. I want to meet him – his dad, my cousin, was a very good friend of mine back in the day and we have a shared gene pool, thankfully on my dad’s side so HD free. But I have no idea how to even begin to entertain him, let alone explain how things are for us. Though I suppose if he is here for even a few hours he might understand the crack, and also why our house is so unkempt and grimy.

And there’s more, so much more, going on, but enough already.

The only reason I have time to write this is that I’m waiting at Nick’s for a delivery.

Anyway – worse things happen at sea, I tell myself. I have recently gone back to an old love and started doing an I Ching reading every day. It always calms me down and every time the message is absolutely spot on. Today it more or less told me to stop mithering and get on with it, basically “keep calm and carry on” in Chinese script. Someone somewhere probably has that as a tattoo. 

It also told me that I can’t do any more than I can actually do, and to step back a bit and let other people do some of the work.

Once again, this is the hardest one for me, and if you too are caring for someone, I bet it is for you. As I’ve said before, I would love to delegate more to other people but so much of the stuff I have to deal with for Nick is up to me as the legal deputy and next of kin.

However, I’m just gently flagging up the possibility that the world won’t end if I leave our visitor to his own devices for a couple of hours tomorrow and go for a swim, or ask a friend with a car if she could take Nick to the dentist.

Perhaps this is the only way to deal with overwhelm – just go really carefully, one small step at a time, and keep on walking bravely through the storm.