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. 

Just another day in Carersville

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

An hour.

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

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

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

Excellent. I wave them off.

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

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

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

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

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

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

                                                

***********

And there’s more.

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

What did you call me?

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

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

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

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

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

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

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

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

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

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

It’s still only just past midday.

Passive Agressive Memo

Hey! Sheffield City Council! Thank you for teaching me the virtue of patience while I wait on hold as you search for any record of our previous conversation.

There’ve been a few of those so I can see why it might be confusing.

But look, don’t worry that your staff didn’t turn up for their appointment yesterday to take that spare bed away from my brother’s flat. They didn’t leave a message or anything so maybe something awful had happened, do let me know you’re OK, won’t you? It was so thoughtful of you to give us a generous two hour appointment slot but explain that the men could come in even if my brother didn’t hear the buzzer, because they have the keysafe number. It's so reassuring to think that they can come in any time!

Oh, and that other no-show appointment the other week? The one to fix the wonky handle on my brother’s bathroom door? The one you didn’t think was much of an emergency, and obviously you’re the council so you know best. I’m just a boring old health & safety nut with nothing better to do than think ahead, I know, silly me, still you were kind enough to agree to send your repairs team for a look.

That must have been another time when something awful happened to prevent anyone coming when they said they would, or getting in touch. You poor things! So accident prone! Well don’t worry about that, as you’ll know by now, the Citywide Alarm Team managed to get him out when the handle came off altogether and he was stuck in the bathroom - he was fine, nothing else broken, just the door and a few little bruises.

Oh and these phone calls? I hope I’m not being a nuisance? Sorry if I’m keeping you away from more important things you should be doing. It’s just that as I was saying, I’ve got nothing better to do all day and it helps to while away the time. And it’s so cheap to call you, too!

Anyway, thanks for all your help. And for that lovely soothing music you’ve been playing while I’m on hold on the phone. So thoughtful. You make me feel special, like you really care.

A Small (Room) Emergency

“Oh, dear, what can the matter be, three old ladies locked in the lavatory…”

We used to sing that at primary school and it seemed hilarious. It came into my head this morning as I prepared to phone the local council and (very old lady-like) give them a piece of my mind.

The handle of Nick’s bathroom door started coming loose just after New Year and I thought we must keep an eye on it. 

By the day of his party, the metal plate had worked itself away from the wood, a couple of the screws were hanging perilously out of their plugs and Simon had to bring his toolbox round to screw it all back in.

At the old flat, he’d pulled the towel rail right off the wall in the first week. We thought that it was pretty amazing if this was the only casualty so far of his well-known super strength, and I felt quite pleased, thinking that this place obviously suits him better, is much more spacious for manouevre and seems to be a lot sturdier under the constant crashing and bumping around.

By the weekend the handle was only hanging on by a thread like a wobbly tooth. The wood around it was so wrecked that it needed some proper attention beyond our first aid, and I phoned the repairs team at the council the day after his birthday and booked an appointment for their handyman to come round. No problem, we'll see you on Tuesday. Gosh, the joys of being a council tenant! I thought. Except not, because he didn’t turn up.  I was away for a couple of days visiting our stepmother so I didn’t find out until nearly the end of the week.

I did wonder if he’d come and Nick hadn’t heard the buzzer, but most of the council workers had access to the key safe and the Trade entrance, or would have left a card.

Phoned the council. A surly man on the helpline did not want to help. 

“But this is a health and safety problem!”

He told me that it didn’t sound like an emergency and he couldn’t book another visit until the end of the month.

“Please. Can’t we do anything sooner, given that this is a vulnerable person and we’ve already had a missed appointment?”

Nope. Talk to the hand. The computer says No.

A few days later I tried again and spoke to a nice woman who said she couldn’t get an appointment any sooner but she would log a complaint about the no-show. Should we just find our own handyman and get it done privately? No, she says, as it is a furnished property and therefore needs to be dealt with by the council service.

So we’ve had the whole thing taped up with gaffer tape and tightened up the last shaky screw head every time we’re there, but it’s been an accident waiting to happen.

It’s no use reminding Nick to leave the door open when he goes to the loo, because he says “I will” and then always forgets and slams it shut.

And sure enough, last night I got a call from the Citywide Alarm service saying they were with my brother who had been stuck in the bathroom unable to open the door as the handle had fallen off altogether. Thank goodness he’d been wearing his alarm pendant, which he doesn’t always remember to do.

Thank goodness he is a bit dazed but totally matter of fact about it, safe and not in any way hurt.

When I go round later to make sure all is well, he tells me “a man from the council has been round to say the door will be fixed tomorrow”

Wow, that was fast! The alarm team must have raised their concerns and it’s finally got things moving. It seems to take an accident for that to happen, I think to myself and not for the first time.

So this morning I phoned up to check that someone really will be coming today, as we were going to take Nick into town to get his broken glasses fixed. Another helpful woman had a look and said, yes it is on the list but not necessarily marked as urgent, however she would escalate it to an emergency call out to be made within four hours.

Four hours have passed. 

I have a bad feeling about this...

Burn after reading

“The Cat has left the Building” 

It sounds like a code message between Cold War spies, but I was finally able to text this to Nick’s landlord last night after Simon managed to bundle the poor creature into her basket and whisk her off to be reunited with Nick in their new home.

It took the best part of three days to catch her, and only then because the landlord was anxious to start stripping out the leaking bathroom before the cellar below got completely flooded. It has been like this for weeks but the landlord kindly said he would wait until Nick moved out to start bottoming the whole thing. He has been saintly, considering that this is the third time he’s had to remove the bathroom fixtures to repair broken pipes, and the floor is completely sodden. The poor cat was hiding in the furthest possible corner beneath the bath, crouching on the sodden joists and too frightened to come to our encouraging coos and chicken legs, followed by the terror of men in big boots starting work in there, so it must have been a relief to be captured at last. 

And the expression on my brother’s face to see her safely back, and the purring she made on arrival at last, made the whole thing worthwhile. So all three of them are together in their new home and seem happy to be there.

Behind the scenes it’s a slightly different matter. I remember what a shock I got the first time round when Nick moved here in May, when all the arrangements I had so carefully been setting up for weeks just dropped into a vortex where papers had been lost, information not passed on and all support simply stopped.

I don’t think it’s quite as bad as that now, but there’s an echo.

So this week I have become the Butt-Kicking Battleaxe as one thing after another goes not according to plan.

Housing benefit application lost in translation, can I provide the documentation again. I will need to bring I.D and all the original documents into the council offices for approval. We'd been told a month ago that it was all being processed, but apparently someone had made a mistake and this is not the case.

The key-safe I requested two weeks ago. Written application handed directly to the new housing officer for Nick's area, “mislaid”. Whoops. Thankfully the social worker has pulled out a few stops and organised a temporary one so that the carers don’t have to wake Nick up and get him stumbling to the door to let them in for his morning call. 

The new carers from Care4S (another pseudonym, natch) have yet to prove themselves but don’t impress so far by twice not turning up til 11am to help Nick dress and administer his morning meds, then returning just an hour later to do his lunchtime call. 

One of them has such a phobia of cats that she hardly dares walk through the door in case she sees one of them (and there was only one of them until last night!) and won’t go in the bedroom because what if a cat leaps out from under the bed. She’s supposed to be helping him dress, wash and undress every day this week. In his bedroom. I feel sorry for her but my brother’s needs have to come first. 

It’s clearly not going to work out so I ring the company to voice my concerns.

“He could put the cats in another room when carers arrive” is their advice. No. I don’t think so.

He is severely impaired and cannot do anything of the kind, hence needing care in the first place. And besides, it’s a one bedroom flat! 

It is inappropriate for this carer to be coming here in these circumstances and I will leave it to you to make a different arrangement, I say, repeating myself slowly and firmly in the old broken record stylee.

Broken record doesn’t work with the TV installation company who fail to turn up for the third day running. Aside from wasting hours waiting for them, only to be told at the eleventh hour that they can’t make it today, Nick is terribly disappointed. Like so many housebound people, he relies on the TV as a companion and friend and was really looking forward to one of his special programmes tonight. I am incensed on his behalf and ring the call centre to complain. I had already negotiated a discount to make up for their first two no-shows, by now I think they owe me compensation for lost time as well as an apology. Fat chance. The call centre girl couldn’t care less. I ask to speak to a supervisor. Sorry, the supervisors have left for the night. Well of course they have! I let off steam with a blistering online review of their rubbish service but it doesn’t get Nick’s telly fixed.

Meanwhile a friend texts to tell me about her father who was admitted to hospital after a fall and was later discharged without his clothes, specs, personal papers and very expensive specialist hearing aids. Unfortunately they had all been mislaid. The hospital will look into it but can’t accept responsibility for lost property, it is up to the patient to look after their belongings. She is hopping mad as well as grieving for his helplessness and frailty and I completely understand.

It is immensely tiring as well as tiresome to be fighting all the time to put things right for a loved one who can’t do it for themselves, especially when someone was actually employed and entrusted to organise it properly in the first place.

It makes me so cross that when the TV aerial company or a council officer fail to do their job they can just walk away for the night and still get paid, while family carers have to pick up the pieces in their own time, which is already taken up with so many other duties of care and often when they’re already exhausted. Not paid to do it, doing it for love. In time that is so stretched that it would make your average public servant look like Richard Branson lounging in his Caribbean hideaway in comparison.

And it's the unfairness of it all that gets me in the gut, that someone like Nick who already has so many odds stacked against them should be at the mercy of sheer carelessness and - well, that's just it isn't it - lack of care. I care, and they say that love can move mountains, but it still won't set up a TV aerial or authorise a housing benefit payment. It's back to the to-do list and the phone calls and the begin again, Finnegan. 

It is a long, exasperating business but I guess this too shall pass and it will all come right in the end.  

More like a baked potato.

Friday: a Curate’s Egg of a day. Wait, though. Does anyone even know what that is anymore?

Maybe more like a jacket potato baked in a bonfire then - tasty in parts and inedibly raw or burnt in others. 

It’s not all bad, anyway, there are definitely good bits of news – the biggest being that we have signed the papers confirming that Nick is now the official tenant of a lovely ground floor council flat, and been given no less than three sets of keys! Hurrah.

So it’s all systems go, with lots to do. We had been ringing the council for days trying to get a date for the sign up meeting; at last this came through on a day I was working so Simon took Nick.
He came back with the keys and a big sheaf of papers, saying that the housing officer urgently needed to speak to me. Apparently there were some important things he needed to go through with me asap so that Nick’s Housing Benefit can be processed correctly, and it couldn’t wait as he might become liable for…. Simon couldn’t remember but something rather nasty.

We’re now dealing with the chap who actually signed Nick up, not the woman who had been so helpful in bidding for the property in the first place. 

Suffice to say that I have been trying to contact him as requested and he is not in the office. Eventually I track him down and he sounds busy. He doesn’t have access to the papers right now but can we talk this afternoon? He will ring me at precisely 3.30 and explain the situation. Around 3.45 I begin to suspect that he is not going to phone back today and sure enough, the call never comes and sure enough, when I finally call the council again he has left the office.

Meanwhile, I talk to the utilities company who couldn’t be nicer and more helpful. They will connect everything up in time for Nick to move in, don’t worry. 

When will Nick be moving? Well, that’s the next thing. We realised that the insurance company who’d paid for the relocation expenses had included a return journey for removals to Co Durham after the repairs were done on that house.

In fact they’re still ongoing, and Nick is moving to a different address in Sheffield instead but looking at their small print apparently that’s fine and they can accommodate that. I'd been about to start looking through local “man and van” ads but it looks as if we can get the wonderful professional movers who will pack it all up in a jiffy. Moving out of the Consett house was almost painless as they were so good, efficient and funny and almost acrobatic in their skills. And kind to Nick.

In the office though, they won’t talk to me about the arrangements as I’m not the account holder. I get Nick on the line and he fails all the security questions. Now they won’t talk to either of us! Oh, for goodness’ sake! I resolve to call back later and try to speak to someone less jobsworthy.  And send a screenshot of the original paperwork for good measure.

Meanwhile, the social worker (I’d forgotten all about her) has emailed to say that Acme will not be able to provide Nick’s care package at the new address as it’s in a different postcode. But it’s only across the road! I don’t understand.

It’s how the local authority divide their boundaries, she says. End of. So I can’t argue with that.

What a shame, though. We had grown really fond of Acme and they were good to Nick. 

People with HD don’t deal well with change. As the brain's executive functions erode it is harder to manage new events and they need the soothing security of a known routine. 
Now as well as the upheaval of the move itself, he will have to get used to new carers too who don’t know him and may not understand his condition. They’ve all been Ok so far, so we just have to hope for the best. 

But Nick is anxious. It’s the change in circumstance; the upheaval of his quiet, cosy life in the home he has got used to, despite all its issues. He says he is not worried about the move but over the last few days his drinking has increased scarily – a new box of wine almost empty by early evening, several days running.

“What’s going on?” I ask. “Is something bothering you?”

He says not and that he doesn’t know how it’s happened, that he hasn’t been doing anything different. But plainly something is up, and I fear for his safety when I’m not around to try to put a boundary on how much he drinks. He’s got some strange bruises on his temple where I suspect he’s banged his head, but he says he can’t remember falling over. Well, after a box and a half of wine in a single afternoon, you probably wouldn’t, would you?