Drugs?

“You’ve been in the wars!”

An acquaintance in the changing room points to my bruises. They’re yellowing now but still very visible against my wet skin as we step out of the showers.

I just laugh it off – you should have seen the other guy! – but the truth is, this is normal. Pushing Nick’s tank of a wheelchair, getting it in and out of the car, or even just folding it up to live in the hall of his small flat, is very hard to do without some injury to self. 

Helping him get his shirt off, or put his shoes on, or move his chair closer to the table all have their risks; even when I’m anticipating it and try to duck, the force of his involuntary whacks can knock me sideways. Or the unexpected head butt as he suddenly lurches backwards, or the shin splintering kick as I stand by him in the cramped crowded lift at the hospital, me as the buffer taking one for the team instead of some poor stranger.

It’s hard to explain this to someone who doesn’t know Nick, or Huntington’s. And not everyone with Huntington’s has quite this degree of violent movement. But it is one of those things you get used to, and that probably seem quite weird to anyone outside this caring lark. Other carers have bad backs from constant lifting, washing, changing of sheets, I know. Not to mention all the invisible and psychological stresses of the role – things even the brightest changing room light would not reveal.

But as I look down at my arms and legs, I realise that the bruises are old, they’re not fresh. I think it might be some time since Nick has really lashed out, and we haven’t been out much because he’s been so ga-ga since taking these new tablets and wants to sleep a lot more than usual.

So they’re working. Well, we knew that, but perhaps they’re working in a good way. They’re making him very sleepy, even with the half dose, but if they are calming his movements then that’s surely a good thing. And to my amazement, when I came to do the online shop this week I realised that there was still a cupboard full of wine and no need to order any more, so he is drinking a great deal less.

I’m still slightly uneasy though. Nick is now taking quite a potent cocktail of medication.

The drugs used to treat chorea are typically anti-psychotics. Sometimes at high doses these can mimic just the effects you want to avoid – severe agitation, risk of falling, choking - and as HD progresses it’s not always easy to tell what is the side effect and what is the actual illness. I can’t tell exactly what effect the new tablet and the newly reduced dosage are having, all I know is that things are subtly different and his sleeping and activity pattern has changed. Maybe all we can hope for is damage limitation? It’s hard to know. *

This afternoon we are going to see the specialist again for an emergency review, and we’ll see what he says. 

Meanwhile I was wondering what to title this post and all I could think of was the Charlie Sheen character at the police station in "Ferris Bueller's Day Off". 

"Drugs?"  

And isn't that as good a way to start the day as any?  

*Thanks to the wonderful online HD community for this link about medications:

Love Actually

It’s Valentine’s Day tomorrow. For several weeks I’ve been walking past shop windows throbbing with red hearts and roses and the penny has only just dropped that it’s that time of year again. So we’ll be celebrating love, and an excuse to eat your own bodyweight in chocolate. Nick will be doing his best with that last bit anyway.

His build-up plan has been going very well and he’s put on 6lbs.

“Let them eat cake”, has been his mantra, and the sweet tooth that he never even had until the last two or three years has gone rogue – to the point that I’m now hiding and rationing sweet things the way I do his wine, doling them out a little at a time. Otherwise he just doesn’t know when to stop.

The other day his supermarket delivery arrived at lunchtime while I was at work and I came in later that evening to put everything away. I couldn’t understand where the chocolate had gone though, as I knew I’d ordered two six-packs of chocolate bars and they were nowhere to be seen. There were just two Kit Kats in his box, that was all. Eventually I realised that he’d already eaten the rest.

Worse than that – a friend who knows about these things had made him some CBD laced chocolates, with the express advice that he’d just have one a day. Nick, his sweet tooth, and a box of chocs on the table in front of him. What could possibly go wrong there? 

I’ll draw a veil. By the time I got there he had eaten half the box and as the music papers used to say about famous stoners, was extremely “relaxed”.

I managed to rescue the rest of the box and hide those too, to be released one by one on special occasions.

Ah, let him have his fun, you might say, but the trouble is, there are some potent pharmaceuticals already in the mix.

Nick started the Tetrabenzine about a month ago, a small dose at first then gradually stepping up to a larger one. It’s clearly having an effect.

Since he’s been taking the full dose of 25mg three times a day, he’s been noticeably spaced out and slow, mouth hanging open and dribbling, speech very slurred and eyes not quite focusing.

Last week there were three days when the carers could not wake him up and he refused food at lunch and tea time, just wanting to sleep all day like a stone.

The Tetrabenzine was supposed to calm his movements but in addition to all the other medications (as well as the daily box of wine) it's been utterly knocking him out.

The third time this happened, I’d been away for the day (naturally) and the carers had been in three times and he’d refused three times to get up or eat, though they’d given him the tablets and then he’d gone back to sleep.

I was scared he wasn’t going to wake up at all and rushed round to the flat, afraid of what I might find. It was 9pm. He was sitting at his table, scoffing cake. Milk all over the kitchen floor where he’d tried to make himself a milkshake, absolutely ravenous because he hadn’t eaten anything all day or much the day before. But still sleepy, and I called the out of hours doctor and asked if we could cut the dose to a half tablet and after consultation with Nick’s GP and pharmacist the next morning, this was agreed.

Rang the care agency and explained the situation. The manager said he’d immediately let all the carers know that it was back to half a tablet, and I printed out another of my little notices and taped it to the kitchen worktop next to the Tetrabenzine bottle and the pill cutter. Put a sticker with a fluorescent highlighter in the MAR chart saying that from until further notice we’re back to a half dose. Job done?

No, of course not.

Nick has continued to be very sleepy and several times I have come to see him around 1 or 2 in the afternoon when the carers have not yet arrived to do his lunch, and found him flat out in bed with just his socks poking out. Really hard to wake. A pot of strong coffee has helped bring him round and then he’s had his lunch and gone about his day as usual though still on noticeable slow-mo.

I had wondered if all the carers were on message about the reduced dosage – just a feeling, as the pill cutter kept going back into the drawer where the next week’s meds are kept, and Nick has been so zonked, but put the thought out of my mind.

Until yesterday, when I was with Nick and watched G, the carer who comes twice a day, offer Nick the plastic pill dispenser with three whole tablets on it. No half doses but the whole thing. It had been five days since the dose had changed, and G had been coming in to do meds twice a day. Oh God.

I had to not scream, but take him back into the kitchen and show him the printed note with the clear instructions, the MAR sheet with the clear instructions highlighted in yellow, the one he had been signing for the last five days but clearly not reading, and and explain once again that Nick was now only having half a tablet. 

The social worker was with us and saw this happen. She has phoned the contracts team at the council and I have phoned the care agency to ask that all carers read and follow the instructions because dosage is extremely serious.

I’ve got to trust them, but it is very scary. Nick is oblivious. He just wants to sleep, watch Netflix, and to have his cake and eat it.

Anyway, tomorrow is Valentine’s Day and it’s a Thursday. Thursday is Boys’ Night with Simon, the night they always go out. Usually to the pictures or to an open mic night at a local pub. Nick looks forward to it all week.

Carers don’t come on a Thursday night and Simon organises dinner, gets Nick undressed and gives him his tablets.

We are not a going-out-to-a nice restaurant type of couple at the best of times (more’s the pity, but we do have our other moments) but we usually mark the occasion somehow. But we can’t leave Nick on his own. So this Valentines we’re going out on a date night with dinner and a movie – me, Simon and bro. It’s not your big padded soppy card kind of love, perhaps, but it’s real and it’s how we are. It’s not your standard issue romantic evening perhaps, but I’m really looking forward to it.

A Small Triumph

It has taken 22 months, six weeks’ worth (at a conservative estimate) of my dedicated admin time, not counting actual meetings or phone calls, possibly two hundred outgoing phone calls, approximately ten hours of Vivaldi’s Four Seasons while I wait on hold, several trees’ worth of paperwork, two sets of original documents lost in the post, three shades greyer of hair, continual and soul gnawing financial juggling every single week, one sense of humour missing presumed dead, and a whole new understanding of the term “Kafka-esque.”

But at long, long last, Nick has had his ESA benefits reinstated. Six brown envelopes arrived in the post yesterday explaining different aspects of the decision. I couldn’t understand any of it and had to ring up again today, and even the DWP advisor admitted that the wording was unclear.

I’d had a number of telephone conversations with a different advisor earlier this week, who told me that he had literally spent two entire days trying to unravel the wild goose trail of Nick’s state benefit provision - suspended, reinstated then suspended again for no apparent reason, since he had left County Durham to live in Sheffield.

He had the kind of croaky Lancashire accent that made him sound more like a favourite DJ for 6 Music than a civil servant so I was inclined to trust him. And Nick has since had a nice arrears payment into his account (even though there is no mention of this in the six letters from the DWP, or the seventh one that came today saying that he needed to send XYZ information by tomorrow, or else) so I was slightly concerned that it might be a blip and would suddenly disappear again. But after the follow up conversation with the girl on the phone today, it does seem to be a genuine rebate of sums owed and the new weekly payment has gone in too. At last. At long blinking last.

Just one thing - Mr 6 Music suggested that if I were to give up claiming Carers' Allowance, Nick would get more money because he would then be eligible for a Severe Disability premium. He can't get this while I am getting the Carers' Allowance. If I stopped, we would both be better off. Can that be right? And if so, how have I not understood this before and why has no-one ever told me? 

I have never been happy about the limitations of Carers' Allowance, which seem incredibly unfair and a deliberate poverty trap for people who are working their butts off and saving the state so many billions. I could stop tomorrow - but I have structured my current working pattern around the limited amount of hours I can work alongside the small weekly allowance, and I'm nervous. 

Can I honestly expect to return to better paid work at my age, having lost so much confidence and lost sight of my previous skills? 

If I were doing project management in the real world on the scale I've been doing for Nick, I'd be earning a six figure salary and I would have status. And staff! But it doesn't translate quite like that into the real world, does it? 

And let's face it, it's not as if I'm going to suddenly stop being a carer. I'll still be spending the same amount of time tending to bro, so would there even be time for more work? 

I need some advice. 

Nevertheless, I have a glimpse of something different, a brightness on the horizon, just being aware that perhaps another way has opened up that wasn't visible before.  

In the meantime, I am going to put all the  fluorescent post-it-note-festooned paperwork from the last 22 months into a file and throw it in the cupboard. Then Nick and I are going out for a slap-up lunch. 

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.

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.

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.

Cake and Fine Wines

I give the carers a lot of flak for being careless, but they do often see things on a macro level that I don’t.

Just before Christmas, one of the regulars asked if we’d thought about a reusable coffee cup with a lid, as Nick was spilling so many of his drinks in the plastic beakers I’d bought him.

“It’s not time yet!” was my knee jerk reaction, but sadly, it is. I just didn’t want to see it. The time has come for him to need a lidded cup, with a handle, and to drink from a straw.

Since the sobering dietician visit, we’ve been putting the build-up plan into action. Nick is getting an extra tea call with carers coming in around 6 when he wakes from his nap, to make him a hot chocolate or a milkshake, and a small snack. My son bought him for Christmas a cute lidded cup from the local cats’ shelter charity, with cat eyes on the side, to distinguish from the sturdy travel mug he now uses for his wine.

Lovely Helen the PA bought him a reusable metal straw, which is a genius thing, and it’s all made a difference – to his clothes, his table top and all the things on it which were frequently awash and corrugated with water wear, and of course to the amount he actually takes in.

Christmas has given him licence to eat, drink and be merry, and he’s steaming through all the chocolates, puddings and cakes that he’s been given. (I’ve hidden the bottles of wine for supervised visits and special occasions…) The carers have instructions to put cream and honey on his morning porridge and I dollop extra cheese and butter on his dinners. He's having a hot chocolate in the mornings too. At this rate he’ll have put on half a stone!

It’s still scary, though, seeing the changes. I kept finding rogue tablets on the floor and blaming the carers (many of them ARE careless, it has to be said) but on the occasions when Simon or I give him his meds, it’s increasingly difficult for him to swallow them. And there are a lot, so it’s too easy for one to be ejected and spat out across the room and you might be too busy patting him on the back to prevent choking to notice.

We saw the GP about six weeks ago to discuss changing to liquid medication, and this was referred to the pharmacist and then in turn to the neurology specialist. It was about time we had a review anyway.

Nick had an appointment to see him next week, so it felt like a good start to the new year with perhaps an adjustment to the meds, because Nick’s movements and swallowing are clearly getting worse, and I felt very relieved to think he’d be in safe hands there.

Yesterday we got a letter from the GP saying that there had been some confusion over the neurology appointment and that they were not expecting to see Nick next week after all, as they only had him down as needing a yearly review from now on.

I don’t know if anyone not affected by HD can even begin to understand the horror of this. Huntington’s is an aggressive, progressive, degenerative illness, where deterioration of all functions happens almost before your eyes – body, mind, everything. Sometimes a merciful plateau for months on end, then wham! a relentless downhill slalom in a matter of weeks.

So imagine a neurological specialist and clinician who maybe knows more about the ravages of the disease than anyone, only expecting to see an HD patient once a year. Does that mean they’ve given up? That there’s nothing more they can do? Or that their record keeping is not quite as vorsprung durch technik as you would have hoped for.

I’m sure it’s a clerical error. I’m pretty sure it’s the Nick factor striking again. But it has chilled my blood.

However, it is his birthday at the end of the week and we’re going to have a party. There will be wine, cake, whatever he fancies, and some of the people who love him.

I’m still wobbly-legged and weedy after a second bout of the flu, and have not much spare energy for organising, and half of the people on his invitation wish list are out of town or out of touch, and Vic the nutty neighbour has been banging on the ceiling again according to Simon; but there will be a party come what may. 

With cake and fine wines! Nick used to love that film. And just the thought of saying feck it, and having a celebration of where we are now, despite all the changes and the fear that goes alongside, is a strangely cheering thing.