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.

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. 

Build me up, Buttercup

A visit to the dietician this week.  She has a wheelchair scale like a treadmill that allows someone who can’t use a standard scale to get weighed accurately. Different wheelchair since the last appointment, so that got weighed first and then again with Nick sitting in it.

We hadn’t thought that he had lost any weight as his trousers seem to be fitting well and not falling off him, and his belt is at the same notch, but alarmingly, the scale says that Nick has lost 8 kilos since his last weigh-in in June. That’s over a stone.

It’s a lot for anyone to lose in six months, but for someone with Huntington’s it’s very serious indeed. He just can’t afford to lose weight like that; any more and he’ll be in real trouble. It’s one of the key signs of the disease progressing. At risk of infection, pressure sores, respiratory failure and pneumonia. A lot of people with Huntington’s die from pneumonia.  

How has this happened? Two reasons, I think: one, his incessant involuntary movements have got worse, and it must take an awful lot of energy just to sit in a chair. Even with his pureed soft diet, it takes a lot of effort to eat. So for Nick, the most routine activities are fraught with hazard and use up more calories than he’s been taking in.

We’ve already requested a medications review to see if a higher dose can calm his movements a bit, though I don’t hold out a huge amount of hope because short of horse tranquilliser, there isn’t yet any drug that will actually stop the chorea.

Second reason for dramatic weight loss: meal timings. Despite my ongoing calls to the office to complain, shout and plead, the timings continue to be all over the shop.

Breakfast has always been in the care plan at a time specific 9.30 – 10.30am.

I used to get cross when I found that Nick hadn’t had his breakfast until way after 10, but now that seems like a Golden Age.

Over the last month or so, carers have been coming to get Nick washed and dressed and give him breakfast between 11.30 – 12.00. Then he gets lunch about an hour later, when he’s not really hungry yet.

Bear in mind that he is not able to prepare his own meals and relies on a carer sitting with him and feeding him with a spoon.  If this is happening when he doesn’t actually want it, he has no say in the matter.

Meals are supposed to be spaced several hours apart but not too far apart. But having had lunch at 12.30, on the days when I'm not doing his evening meal he may not get dinner until almost 9pm.

I do believe that this is verging on abusive. It’s certainly on the spectrum of neglect that you hear about when more extreme cases come to light in the press. 

When I complain (frequently) I’m told that it’s because there’s been an emergency with the person before Nick, but I’ve stopped buying this; they’re doing house calls, not A&E, and even in this roller-coaster world of adult social care there are only so many actual emergencies. They know I live nearby, and that if there’s a reason they’ll be late to Nick, they are supposed to let me know so that I can step in. But they don’t.

People with HD need routine so that they can make sense of the world; waiting for the carers to come makes Nick very anxious and of course then as well as being hungry, his spasms get worse. He could help himself to a banana but he simply doesn’t have the initiative, and that’s the illness too.

I am so cross and frustrated about it and it didn’t have to take a visit to the dietician to show that it’s not good for Nick’s health, but nothing is changing.

My complaints have now been passed to the contracts department at the council but I’m beginning to think that’s going in the same direction as my complaints to the care company. Nowhere. Even Tommy Cooper is disappointed (aka Cath, our lovely social worker, who up to this point has listened to my woes and then gone “just like that” and magicked some result out of the hat)

We’ve got a meeting next week with her and one of the care agency admin staff – the manager doesn’t even bother to reply to me any more and I wonder how many other people are complaining and if he’s gone into hiding – and my finger is itching to press Send on the howler I’ve drafted to the Care Quality Commission, but I’ll wait until we’ve had this meeting and perhaps this will force a change. Otherwise, we have to find a new provider, and this is the old mulberry bush that we‘ve been round and around before – none of them have the capacity to take Nick on.

So let’s get Christmas over, and think about it all in the new New Year. We have to build Nick up and get some weight back on, which shouldn’t be too difficult in the festive season!

Porridge made with extra milk powder, cream and honey; a mid morning hot chocolate with extra milk powder and a chocolate flake; omelettes and mashed potato with lashings of butter and cheese. He’s not supposed to have crisps or crackers or anything that can catch in the throat but I can make him peanut butter on soft toast dipped in a thick soup. I’m going to be cooking like Nigella this Christmas, by the look of it.

The dietician also suggests that I up his portions so that like an expectant mother he is eating for two.

All of this I can do, but it’s going to take some time to get all the carers on message with this when they have only just understood the absolute basics and can’t even keep to their contracted hours.

And also – Nick is only barely making ends meet as it is and Simon and I have stopped even keeping a tab on how much we’re subbing him, just to get by. And we're not exactly rolling in it. 

He doesn’t have enough income to live on. So how are we going to afford all this extra food? The spectre of the foodbank looms. We can manage, I know we can, but it will take more planning and more time and energy. A lot more planning and energy.

I felt really frightened at first, but my inner Jewish Mother has thoroughly told off my inner whinger and got to work on the Nick-build up programme, and instead of Nigella we’re thinking Jack Monroe as our guiding star.

Meanwhile, Nick has taken his build-up programme very seriously too. He likes a chocolate bar in the evening and I’d bought him four packs of soft chocolates and some cake bars that I thought would last him a week. He scoffed nearly all of them overnight.

“I thought the dietician would be pleased with me”

I’m not sure if the dentist will, though!

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.

Big Al and his crazy go-go rhythm orchestra

We all know that the internet has its dark underbelly but today this has really given me the creeps. Big Brother is definitely watching us, even though you might think he has better things to do.

See if you can explain this, pop kids: I do Little Brother’s online shopping once a week, in his flat from his laptop, at his address with his email account and bank account and internet provider. He is a creature of habit and likes the supermarket beginning with T…

I prefer to see what I’m buying, tend to shop locally where possible, and use a different supermarket for a big shop. I have never ordered groceries online or had anything more than a local veg box delivered to our home address.

Simon shops our local T… every few days but he tends to pay cash and hates being a number not a free man so he doesn’t use a loyalty card.

However – when I went to do Nick’s online shop this afternoon, the “usual purchases” suggested alongside his habitual order were exactly what Simon had last bought at our local shop. Beer, rizlas, pizza and green apples for the lad, soya yoghurt for me, and a different newspaper than the one Nick reads. How on earth were they appearing on Nick's laptop? 

Were we sure we didn’t want to order these favourites again today, asked the prompt as I tried to check out.

I don't understand how this is possible.

Simon, by the way, had not seen Nick since buying those things, but the only thing I can think of is that it’s our phones. There is no directly shared information but when we’re in Nick’s flat with our phones, the phones must all be having little chats with each other and exchanging our secrets. To the point that Simon and his phone would not even need to be anywhere near Nick but information would somehow transmit to Nick’s laptop. No, surely not, it doesn’t make sense.

I asked our millennial son and he just shrugged – he’s just so used to Big Brother hovering, he doesn’t even question it. It’s really given me the heebie jeebies, though.

When I think of algorhythms, I like to imagine a Cab Calloway style jazz swing artist, Big Al and his go-go rhythm orchestra, all wide grins and trumpets and baggy suits on a podium. The reality is nothing like as cuddly. 

But tell me this – how is it that the internet knows all these things about our consumer habits but sharing actual useful information so that carers acting on behalf of a loved one don’t have to start from scratch and go through extensive security checks every single time they call, say, the local authority?

It would be so useful if (once a basic security clearance had been given, of course) we didn’t continually have to jump through all these hoops; the GP has me down as Nick’s primary carer and first point of contact for instance but although the district nurses have had the same information, it keeps falling off their system so I have sometimes found notes from them “To whom it may concern” with a prescription to pick up meds that the GP knows nothing about, from a pharmacy that we don’t use for any of his other medications. The different departments of the local authority, likewise. 

Of course you need some basic security checks so that people aren't taken advantage of, but when you have to do it again and again and again it becomes very wearing. 

If only they could take a leaf from Tesco’s book!

Would that give me the heebie jeebies too, though, would it be too much?

Forget it, cause it’s not going to happen any time soon. The very thought is enough to short-circuit every appliance in a five mile radius.