Tell me Something Good

“Nick is very angry”, says the Senegalese care worker.

Oh no! What’s the matter now? I’m immediately worried. It’s not like Nick to be angry – actually, it’s about the one characteristic of Huntington’s Disease that he doesn’t have.

Our mum had legendary rages and spat out fury like a tiny wild cat; it’s a well-known symptom of the illness and something most families affected by HD will know only too well. But Nick is placid and even tempered, and the nearest I ever see him to cross is when he gets agitated by something like his TV not working or thinking he has run out of wine.

“See!” she points at him as he lunges at the spoon of yoghurt being held towards him by her colleague, “he is moving very angry.”

I realise she means that his physical spasms are getting worse. And they are. Despite relative order and calm over the last few days, despite a recent medication review, despite everything that anyone can do to keep things on an even keel, the chorea is noticeably worse and also, in the warmer weather he seems to be over-heating like crazy.

But he is happy – and so, I realise am I. Despite all the bloody slings and arrows and all that jazz, the paperwork and the latest housing benefit fuck up and the broken hoover and the nutty neighbour and every little cross we have to bear, I just feel extremely grateful that here we damn well are.

A friend who knows about these things was telling me about Twitter’s Angry Algorithm. Apparently angry tweets (and I’m sure this equally applies to posts on Facebook) get much more traction than happy, jolly ones and photos of otters.

Apparently it’s an algorithm thing. The web has a dark heart and feeds on Schadenfreude (and its ugly sisters Angst and Weltschmerz)

Well, so be it. I've certainly added to the angry thing more than somewhat myself, but since hearing about that I've decided I'm not playing. 

Today I have to take Nick to the bank in town to get bank statements detailing all his income and expenditure for the last six months, so that I can later take the statements to the council as proof that his circumstances haven’t changed; they have stopped his housing benefit and council tax exemption because they have somehow got the impression that he is getting money that he hasn’t told them about. Yeah, right. And - if only! His finances are down to the knuckle as it is. If anything extra ever does come his way, that would be from me, bailing him out most weeks because we can’t really make ends meet.

This is not just us, by the way, it’s a terrifying percentage of carers nationwide who prop up their loved ones and the whole decaying social care system, as revealed in the State of Caring report this week.

And, No, I still haven’t organised getting Power of Attorney at the bank yet which would make life so much easier. It’s on the list.

But. Living well is the best revenge as I’ve said before, and despite all of the above, the only thing we can do is to make the best of it. The trip to the bank and trying to find a disabled parking space – always fun! – will be a micro adventure.

So stuff you, angry algorithm, go and find a president to play with. I am choosing optimism and positivity today.

When Life Gives you Lemons….

…well, given the changeable weather, I can’t decide whether to make a cold G&T or a hot toddy, but whatever, I’m determined to find a positive outcome to this latest curve-ball.

What else can you do? It’s the only way I can deal with a difficult situation, and what carers do in general. Life knocks you over – quite a lot - and you just have to dust yourself off and get up again.

This is a bit of a rant, but do hear me out as there is a positive reason for telling this sorry tale.

I wrote last year about our disappointment when Nick was expecting his new electric wheelchair and we waited in on the most glorious day, one of the first delightful days of that long hot summer. We were very excited because the old wheelchair had finally given up the ghost and wasn’t safe to use anymore. The NHS order the product then the delivery and fitting is carried out by a company called Ross Care.

We waited and we waited, but the wheelchair didn’t arrive. The delivery had been scheduled for 9am. I called Ross Care switchboard and was told the engineer was running late but would be with us by lunchtime.

I phoned several times during the course of that long, hot afternoon and kept being told someone would be with us shortly. At 4pm Nick went for his afternoon sleep and at 5pm I left, desperate for some fresh air and sunshine. Such a waste of a day.

When it did arrive, a couple of days later with no warning, there was no fitting as ordered as a matter of course by the OT at the wheelchair service, no contact with me as urgently requested, just bunged in the hall for Nick to trip over.

We were just pleased to have it at all, though it was a clunky old beast and the power pack was always a pain to dismantle when you wanted to fold the wheelchair up to go in the car. I complained to Ross Care about their poor service but never got a response.

Fast-forward a year to yesterday afternoon – another beautiful, warm sunny day after several weeks of really yukky weather. Last year’s wheelchair had started to fall apart and Nick has had a new once since the beginning of May. That took two no-shows and three afternoons of waiting in too, but we were glad to get it at last except that the battery was flat on the power-pack so the engineer took it away to test and said he’d order a replacement.

The call history on my phone tells a story as I see I had called Ross Care at least once a week for the next six weeks and several times on either side of my holiday, in an attempt to get the chair fully usable. Every time I rang, a receptionist would say that she’d look into it and call me back.

Returned calls to me from them? Ha. I’ll leave you to guess.

I kept calling, of course, because that’s what I do. So we were both delighted to secure an appointment at last, for this week, a fairly reasonable slot of 1 – 5 (some organisations require you to wait in all day) and a firm promise that the engineer would phone beforehand to make sure we were home.

Instead, I arrived just after 1 to find the newly assembled wheelchair blocking the small hallway so Nick had already got into a tangle with it when going to the loo.

No call. No fitting. The engineer had been in and out and gone by 12.45 and when I tried to move the wheelchair I couldn’t budge it because an electric wheelchair needs a key to turn it on and he hadn’t brought one.

More phoning. Thursday is Nick’s precious night out and I had awful visions of him not being able to go. The receptionist kept saying that she would “try to get hold of“ the engineer to ask him to come back and leave us a key, but after four hours of me phoning she had still not managed to contact him. Where was he? Scotland? Space? Or maybe just listening to loud music with his phone off. Maybe she just hadn’t bothered to call him at all. Who knows.

I made one last call – being friendly and polite throughout because it really doesn’t pay to piss off the receptionist - and asked her to put me through to a supervisor: someone with the clout to order an urgent delivery of the missing key and a proper fitting to make sure this time that all elements were in place and doing what they were supposed to. She promised to get someone to call me straight back.

Three days ago. Still waiting.

So – we did go out that night and had a beautiful drive out to the hills for a drink in a country pub. Nick had the simple solution that we would just take the power pack off and use the wheelchair as we have been anyway, manually so that it folds up in the boot of the car. Same as we’ve been doing for the last two months, then.

It’s a new month tomorrow and I will gear up again for more telephoning even as I think how bloody infuriatingly boring it is to have to do this over and over again.

And why am I telling you all this? Partly to share my frustration of course and have a good sound off to a captive audience, but more importantly, this: - I’m genuinely horrified that once again, organisations and different departments of the same organisation, are not communicating with each other, to the detriment of the service user they are working for. And that this seems to be completely normal.

In what world is it normal for a mobility specialist to deliver a wheelchair for an impaired person and not bother to check whether all the parts are there and working? To leave an impaired person stranded due to wilful neglect of the equipment that was meant to help them?

 

As far as I can see, the NHS wheelchair service (which has a waiting list longer than the coast-to-coast walk) issues an order for the product in good faith, with (both times we’ve experienced this) the understanding that the equipment provider will make sure it properly fits the client. And that it works, of course.

What actually happens is that the provider just sends out a delivery driver to each address, no nonsense with fitting or checking, boom, on to the next one. AND PEOPLE PUT UP WITH THIS. I talk about the Nick factor but really, this cannot be happening only to us.

There has been too much blank mystification whenever I have talked about fitting. Too much “Talk to the hand” when I phone to raise a concern. Too many failed attempts to contact their own delivery people, especially when a job has not been completed or gone wrong. Too much radio silence from top brass, whoever that is. My suspicion is that this happens to a lot of people, not just us. 

This isn’t right. It’s yet another example of the sickness at the heart of our social care system, the fact that organisations simply do not communicate effectively with each other or even inside their own departments. The whole system seems to be run a bit like Bletchley Park, fragmented and compartmentalised, sometimes with no clear lines of communication at all between the areas who you’d think would most need to talk to each other. What do we do about it? Especially when most of us are already on our knees as it is.

Well, I think the only thing to do is talk about it and make a fuss. Do NOT put up with bad communication and terrible service. We have to address this not just as aggrieved consumers but as problem solvers, the very people who can actually point out what needs to change. 

I think we have to see that we have power, as all consumers have power. 

I will continue to call Ross Care until Nick gets his wheelchair sorted, but (with my old community development head on) I'll also ask if we can talk constructively about improving their service. No company can be so arrogant that they don't want to do that, surely. Or am I being naive? 

Anyway, we'll find out. Things only change when enough people have had enough. 

Mary Poppins Returns

Is it possible to come back from holiday as a carer and not walk into some kind of slapstick disaster scenario, the kind where you innocently open the front door and a huge tidal wave of dirty water bursts through and knocks you over? I wonder, as I sit here wading through a towering pile of paperwork and things still undealt with to chase.    

Actually, apart from the admin shit storm it hasn’t been too bad. While we were away, Nick was so well looked after by Helen and a wonderful dream team of friends, that in some ways I think he barely noticed we’d gone. There were a few blips but nothing major.

My A-Z list of contacts and contingencies stretched over three pages and spanned the main areas that someone could reasonably expect to have to deal with in my absence. I’m not sure that anyone even looked at it, which is probably a good thing. Things ticked along just fine and they didn’t need to.

Of course, that was lucky. I had spent the fortnight before going away making sure that every little thing I could possibly think of was covered, and there was a lot – financial juggling to make sure Nick had enough cash and that bills could be paid while I was away, medications review, hearing aid repair, continence assessment, OT and wheelchair update, repairing the broken loo, getting in touch with police and housing and social worker about ongoing harassment by the upstairs neighbour (he has continued to tape ill-written hate notes onto Nick’s door every day for the last month, but mercifully didn’t actually attack anyone. I’m almost beginning to see the notice writing as his hobby.)

So everything was fine and although I did return to a couple of minor annoyances – nobody had changed the cat litter in two weeks and I arrived to find Nick sitting in a stuffy, stinking room with flies buzzing around his table, because the (paid) carer who was supposed to do it had not turned up – apart from that, nothing untoward, and he was happy and nurtured and safe. 

“When are you going away again?” said Helen jokingly but I actually felt that it would be possible. 

I can’t thank her and the other friends enough for that, and even the usual carers who carried on doing their normal routine perfectly well without me there, even if a few things got left undone without my constant tweaking and nagging.

And it did make me wonder – all the stuff I do, the never-ending to do list and phone calls and trouble shooting – is it all in my imagination and do I make a rod for my own back most of the time?

But then, all the letters about benefits and health appointments and missed payments and PiP assessments and insurance and utilities and you bloody name it, were all waiting for me to deal with on my return and they are certainly not imaginary, I only wish they were. 

And last night I popped in with some food for Nick and found two carers standing outside the flat looking fazed. Between them they had managed to take the key out of the keysafe and drop it down the drain a few feet away. Now they didn’t know what to do.

“Do you have gloves with you?” Carers nearly always carry gloves.

So armed with latex, I climbed over the fence around the little garden area and knelt down amongst the weeds to prise off the drain cover and yep, there was the pink key fob glinting down there in the water. Not too deep – I fished it out and wiped the muck off on the grass. The carers looked astonished. I genuinely don’t know what they would have done, but chances are that Nick would not have got his supper.

Then we went inside and I put Nick’s tablecloth to rights as it was sliding halfway off the table onto the floor, and in the process discovered the hearing aid that had been lost for the last week and that no one had been able to find. And found some new batteries to put in the clock that is so old it doesn’t even tell the time properly but is an important little talisman for Nick to reach out and touch periodically on his table.

I felt a bit like superwoman, putting everything to rights in the blink of an eye, or maybe Mary Poppins magically restoring order in the room, but it was just luck really. And the eagle-eye, 360 degree overview that perhaps only the primary carer ever really has; the person who’s there every day in all weathers, dealing with every aspect of the care from A to Z and back again. No-one is indispensible really, but that eagle view can take a lifetime to acquire, just knowing that person so well, understanding their quirks, anticipating their discomforts and getting a feel for what they need but can’t find the words to tell you. 

On the other hand, I know I must have blind spots just because I know Nick so well that maybe sometimes I don’t notice the obvious. So it’s really good to know that there are other people, like Helen, involved and getting their own feel for his well-being.

But, “It’s very good to have you back, Sis”, said Nick. And it’s good to be back.

This is often a thankless job and a frustrating one, and goodness knows the admin is enough to drive you halfway round the bend, but for the times I can walk into the room and be Mary Poppins for my bro, it’s all worth it.

Holiday Jitters

We’re going on holiday tomorrow. For the whole of the last fortnight I’ve been on a countdown – not the “ooh, just six more sleeps til we hit the beach” type, but “Can I get everything I can possibly think of in place in time so that we can actually leave Nick?”

I’ve written before about holidays because last year I had a long weekend in Italy with old friends, coinciding with a particular crisis beforehand that had me eaten up with worry. 

It was hard to leave in the middle of it all, with things unresolved, worried for Nick's safety and me the only person that any official body was prepared to deal with. Some organisations don’t make it easy for carers (full stop) but they certainly don’t make it easy for you to take a break.

Our local council will talk to me and to no one else on Nick’s behalf; they’ve got my name, rank, serial number and have vetted my original Power of Attorney documents – fair enough, you might say, to protect a vulnerable person, but this is just to talk to the repairs team! 

All I want to do is report a broken window catch or a fault with the boiler, not anything remotely sensitive. Just request a repair before he hurts himself – as when he’d pulled the radiator off the wall by his bed - or gets locked in the bathroom because the door handle had fallen off. 

If that should happen when I’m not there, then woe betide if it’s an emergency, because they will only talk to me.

I’m giving you a silly example perhaps but as I think of all the things that happen in a typical week, and the total 360 degreeness of caring for someone with such a complex condition, well, just typing this is giving me a tummy ache.

While I was in Italy, Simon was home, holding the fort. He made me promise to switch my phone off and just relax and have fun, and in the end I did and oh, I really did and it was glorious. 

This time we’re going away together and Nick will be superbly looked after by Helen, I have no doubt, but however sound and capable she is, she hasn’t encountered the 360 degreeness of making an emergency dental appointment for a broken tooth while dealing with wet trousers and another handle pulled off the door and the morning carers came at WHAT time? and there’s spilt milk all over the kitchen floor and the ESA payment hasn’t come in so how is he going to pay for his shopping, and oh God the neighbour is banging on the ceiling again and swearing through the letterbox. 

That’s pretty much my normal, and while I don’t kid myself that anyone else with a bit of savvy can't cope, they still need to know all the phone numbers – the dentist, the care company, the social worker, the CPSO, the GP, the Uncle Tom Cobbley and all. Where to find the spare aprons and bibs and the batteries and who to call if... or if... or even if....

My list for Helen isn’t just a list, it’s a compendium. All the things to do. Charging the electric toothbrush, cleaning out the wax in the hearing aids, changing the cat litter, constant stock-taking for aprons and loo roll and cat food and washing up liquid and cleaning materials and not even to mention the food ordering for a special diet. Taking the hoover to be mended because one of the carers left it in the middle of the bedroom floor, trailing flex and all, and Nick tripped over it.

Counting out portions of chocolate, cakes and wine so that he doesn’t have them all at once (bitter experience); ordering yet another remote control and checking that the hearing loop is working.

It’s not rocket science. But...

If there were any continuity of care, or the carers were the type to do anything at all outside the box, I could expect them to do some of the above but they just don’t. And these are just small examples of domestic type things, not the big stuff, the financial and administrative tasks that take so much time and anxiety.

The point is, you need to understand that there is always a 360 degreeness with an illness like Huntington’s. Caring for an impaired person involves lots of little things that suddenly become big when they’re unattended.

I worry about the neighbour, who was banging on the ceiling again today and shouting at me in the corridor. He has left an abusive message taped to the door every day for the last ten days. 

I've told the police, who say they'll send someone round to check in. It's not good. But we've covered everything we can.

Helen says, Don't Worry! Just go. Go and relax. I know she can deal with it, and that all the aforementioned on a daily basis would just make anyone into a massive control freak. 

Nick says, Have a lovely time, Sis. And I think he is quite looking forward to a bit of a change and dome different faces. So we're going. 

Expect a chilled out, relaxed, refreshed person to be writing in a couple of weeks with an "oh, what the heck" disposition. 

Well  - here's hoping. 

Stretchy Time

Have you ever noticed that when you’re looking after another person there are lots of different kinds of time?

There’s “No Time”, when you’re really in a hurry but just have time for a five minute job that then takes much, much longer due to unforeseen crises, accidents or emergency. Or, let's be honest, carelessness. 

There’s “Time Was” when some precious thing you were in the middle of doing or were looking forward to doing for yourself, gets nipped in the bud because the person you’re caring for has an unforeseen crisis, accident or emergency.

There’s “Where did the Time go” when the one thing you set out to do gets buried while reacting to a non-urgent but consuming vortex of care needs that you hadn’t anticipated. Even tiny things, like a lost hearing aid needing the room being turned upside down, or discovering carers have left wet washing in the machine to go mouldy, or a full cup with loose lid capsizing all over table, mobile phone, wallet, paperwork, trousers and shoes, requiring major mopping up and a complete change of outfit.

That kind of thing. 

And sometimes of course it's more than a small derailment, it's a genuine crisis, accident, illness or emergency. The big stuff. That's "Time Stops". You probably know that one, and luckily it doesn't happen too often. 

And then there’s a special kind of time I call Stretchy Time. When you have an intense period of crises involving all of the above but so prolonged that however hard you try, your own needs gradually sideline to the point that they just stop even mattering. You come up for air briefly and stare at your own personal to-do list with a kind of benign curiosity like a monkey looking in a mirror.

At this point, time seems to expand, the way it does when you’ve not slept properly for weeks and everything feels slightly unreal. You carry on dealing with the issues at hand because fire-fighting is what you do. You hit the wall but you keep going and there’s a weird kind of release in this because even though you’re up to your neck in trouble-shooting and firing off ten thousand emails, texts, phone calls and fluorescent post it notes (baby, if I don’t write it down then I’ve forgotten it already) trying to sort the problem and be with your person too, at this point your own responsibilities have fallen so far off the map that you can’t remember what they were anyway. 

You are free, floating in a liminal space. At times like that, you’ve given up your personal autonomy so much that it almost starts to feel easy. Nothing really matters. It's quite a cosmic sensation. 

Maybe I'll send this link to Professor Brian Cox and he could do a programme about it! What do you reckon? 

Baring my soul in public

I’m a very private person yet happily write all sorts of personal things here in my blog. When I was asked to write a diary about caring for my brother, it didn’t seem to be any different and actually I was really delighted to think of reaching many, (many!) more people. Nevertheless, now this piece has been published in the online “slow news” journal Tortoise with 7,000 + subscribers*, I feel quite strange about it all.

Nick and I both wanted to do it because we both think the world needs to be more inclusive and more forgiving. Huntington’s is a bastard, no two ways about it, but we want it to be a condition people know about and can recognise, not something hidden and shameful.

So many families live under that shadow; I can understand why you might not want people to know that you have an incurable hereditary illness in the family but in the end, if it’s in your gene pool it will get you and the silence helps no-one.

And carers – we’re so invisible to so much of the world that even a popular "Discounts for Carers"  scheme only recognises paid care workers, not unpaid carers. How nuts is that?

So I wrote this piece for all carers and for anyone living with a life limiting condition that takes them out of plain sight of the world.

It’s really not intended to be grim reading – there’s frustration and anger and heartbreak there, but humour too I hope, powered by the belief in a better society that looks after its weak and helpless, and strength in solidarity, and always, always love. 

*It's a fantastic platform for informed long and short reads - the news behind the news. Proud to be associated with such intelligent and interesting journalism. 

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.