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. 

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? 

It’s giving me the pip

That’s rather an old fashioned expression now isn’t it? It means, to irritate exasperate or annoy.* 

*Look at this wonderful link, which, if it’s new to you, will explain all.

Oh, those people at the DWP knew what they were doing. I bet there were public school boys involved who’d read their PG Wodehouse and were having a little private snigger at the connotations, the nuances of which us plebs wouldn’t ever understand.

Well, I have thoroughly got the pip.

There’s another big stack of its paperwork lying on my desk and it seems so unfair.

We had finally got the letter about transferring Nick’s DLA to PiP and I duly filled in the Work Capability Assessment form, being very clear about the extent of his impairment. Also, names and contact details of all the various professionals involved in his care, and 30 pages of supporting evidence including his CHC assessment done at New Year. My printer had broken so I went to the library to make the copies, and write Nick’s National Insurance number on each side of every page. Just doing that bit and checking it all took over half an hour. Then I went to the Post Office and posted it off.

Job done, I thought.

On Thursday (admittedly a quick turn around) I got a new application form for PiP, this time addressed to me. I couldn’t understand why. It was obviously a different form and generated from the previous one, but why? What part of “diagnosed with Huntington’s Disease in 2010, progressive condition, cannot dress, wash or feed himself, acute dysphasia and cognitive impairment” had not been not quite clear?

The questions were almost identical to the previous form, asking the same things about what can you / can’t you do for yourself.  I felt very anxious about this and why they were asking the same things again, as if to try to catch us out – as if Nick were just pretending to have Huntington’s Disease, you know, just for a laugh and to con a few quid out of the public purse.

The first time Nick applied for DLA, ten years ago when his symptoms were too visible to ignore, when he had been sacked from his job because he kept dropping things and he had been told he was no longer fit to drive, he was turned down.

His Huntington’s advisor in the north east appealed and this time won by a couple of points.

Not because he had been diagnosed with a life limiting progressive illness and was suffering from panic attacks, acute disorientation and stress incontinence, but because he was deaf in one ear and had to wear a hearing aid. Give me strength! He got his DLA, though. And a Blue Badge. 

Back at my desk, May 2019, I kept circling this new lot of paperwork. Eventually the penny dropped that this is Part 2 of the application, the Daily Activities Assessment to establish the extent of Nick’s support needs. It never occurred to me to look this up online, I had just thought that you made the application and then someone would get back to us with a yay or nay. Goodness, how naïve.

The damn thing is sitting on my desk and I will just have to woman up and fill it in. 

Safina, the advice worker at our local Carers’ Centre, gave me a crib sheet of the points system (“Cannot stand and walk unaided more than 20 metres – 12 points”) and it is immediately apparent that Nick will score highly on all counts.

What grieves me though, apart from the exasperation and annoyance of having to spend another chunk of my time going through all this again and gathering the bloody supporting information all over again (yes, they want that too) is that it’s always time I could be spending with Nick, being with him rather than closeted up somewhere I can concentrate doing this for him. He’s oblivious of course, I’ve told him that his benefits are changing and I’m having to apply for the new version of DLA but he doesn’t really retain the information or understand. 

Just have to suck it up and fill the form.  One of my most hated tasks. I’m a right- brain intuitive with "unusual" handwriting. Some people have the neat and orderly form-filling gene, but me, no. It’s a painful chore. And that’s me with two degrees! How must it be for someone not confident with their literacy, struggling with an impairment, trying to do it for themselves?

And then underlying all that is the actual content of the questions. Every single part of it only highlights exactly what Nick cannot do and will never do again. Leave the house unaided. Walk 50 yards. Prepare a simple meal. Make a budgeting decision. I know all these things because I see them every day but seeing it in such quantitative cold hard print makes it very real and only adds to the cruelty of this horrible illness. But there we are. All I can hope for is that he gets the award without too many further hoops to jump, and that someone who reads it breaks out of their Bot mould for a few minutes and learns a little bit about what it really means to be living with Huntington’s.

My Aim is True

It felt especially hard to leave Nick this time. I’ve been up to London to look at the Queen (no, not really) for three whole days and nights and saying goodbye to him on Sunday was a wrench. I was sure he’d be OK – he has the carers, for all their lackadaisicalness, and Simon was going to look in – but the rest of the time he would be on his own and increasingly I fear for his safety.

Also – it’s a long day, as he once told me so poignantly when we talked about his drinking. When your world has shrunk so small and you can do so little for yourself, what else are you going to do to help the hours pass?

We’ve been over this so many times. He can’t live with us because we haven’t got the space or anything like the possibility of adaptations; we’ve got too many stairs and steps in this crazy ramshackle Bohemian house. He wanted to be independent, anyway. But that was before the illness got so much worse, and now independence is more of a vague concept than a practical reality.  At least he’s in a place he calls his own, with no one else changing the channel on the TV or telling him what time to go to bed.

And I need my own life. Juggling like this practically kills me sometimes and I forget how much effort it takes just to run both of our lives, after a fashion. If I don’t get away now and then – to walk, to swim, a little trip to see friends or just be at home with my family, then my batteries get too run down to be 100% there for Nick.

But it’s hard to leave him. I just don’t like leaving him on his own, so vulnerable.

Just walking to the loo and back is getting so much harder for him, his odd unrhythmic shuffling gait so much more jerky and unsteady. He comes back with a damp patch all down one leg and I know there’ll be a puddle on the floor. Unlike the song, his aim is not at all true. Really need to call the continence people again to ask for advice – I’ve been told that they can supply a kind of padded jockey short and I did flag this up a couple of months ago but no-one has been back to us yet. It’s on the to-do list for today. Likewise calling our old friends the council repairs team about the bathroom radiator. Nick leans on it for support whenever he staggers to the loo, so It’s coming off the wall again.

How to put all this in the PiP application form, which asks for as much information from as many providers as possible? As usual, I’ll also send a bunch of HDA information leaflets explaining the complexities and horrors of the illness. So many of these that it won’t all fit in one leaflet and there are several ones covering just some of the symptoms and issues involved. But even these don’t address the ongoing day-to-day crises and concerns.

Nick doesn’t really understand what’s happening when I’m sitting at his table, cursing under my breath as I fill out forms like this or wrestle with his online banking. His DLA payment is still coming in but has suddenly moved to a week later than it had always been, so he is out of pocket and I’ll have to take some money out of his savings to cover this week’s standing orders. 

I tell him it’s fine to listen to the radio or look at the paper as usual but since I’m here he wants to have his chair moved so he can see me, even if he can’t quite process what I’m doing, and he sits uncomfortably, getting twitchier as he knows something is happening that he can’t quite grasp.  

I explain again about the PiP but his short term memory can’t hold on to the what’s and why’s, and I have to play down any mention of anything changing as that makes him too anxious. He twitches and keeps eyeing me nervously as I sit with the laptop at his padded table. It’s not exactly quality time in its ideal sense.

However, at least when I’m doing all these tiresome tasks we are at least in the room together and he knows I’m here for love. Apart from filing this wretched form in and surreptitiously googling incontinence shorts, I’m not sure what else I can offer.

Another Swell Party that was.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

A Lesson.

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

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

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

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

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

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

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

And relaxed. Sleep is such a healer.

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

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

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

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

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

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

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

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

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

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