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. 

Sunshine and Rain (and a touch of snow)

It’s been a full-on week, and one that I really thought might break me. When you spend the majority of the day, every day, dealing with someone else’s business and never seem to get to the end of it and no time even to check in with yourself, it’s just exhausting. Your brain starts to shut down, dreams forgotten and plans on hold. You feel you have no life. And it’s true. When things hit like this all at once, you have no life – you just have to shut down your ego, you are there to serve.

Especially on weeks like these. As well as the TV and the NHS penalty notice, there has also been a problem with Nick’s benefit payment failing to arrive in his bank account this week, and a warning from his utilities provider that his gas consumption is unprecedently high and they are going to suspend his account. Oh, and his CEA card is about to expire and they need a set of evidence. Lots of emails, lots of phone calls. Nick sits flailing while I try to explain to him what I'm doing.

He has been to the dentist and he's had a haircut. And we’ve seen the neurological specialist too. 
Who was concerned about the severity of Nick’s chorea; he’s on pretty much the highest doses he can be of the Sulpiride and Olanzapine and he’s still unable to keep still, head nodding, arms jerking and legs kicking out like a mule. The specialist decided to try a different medication and has prescribed Tetrabenzine – not instead of, but in addition to all the other tablets he’s taking.

Naturally it’s not just a simple dosage but a trial run of half a tablet a day for two weeks and then gradually scaling up to a larger dose. Nick gets his current meds in a blister pack, compartmentalised for morning, noon and evening meds for each day of the week. This will be separate, administered three times a day by Nick’s carers alongside the tablets in the pack.

I’ve printed out instructions for the carers very clearly and just have to hold my nerve and pray that they can cope with this new development because some of them still can’t seem to read a label on a dish saying “Please give Nick this pasta for lunch”.

There’s a slight risk that the Tetrabenzine will cause a low mood, and actually this is already a big risk with Huntington’s as inevitably it goes hand in hand with a low mood. To put it mildly.

Nick has been taking anti-depressants for the last ten years, since before he was diagnosed, but since moving to Sheffield he has consistently said that he feels happy and loved, and rarely feels down – which is terribly moving to hear, thinking how much his health has deteriorated in that time and how many reasons he could have to feel bad. So we think it’s worth a whirl.

“How will we know if it is affecting his mood?” I asked.

“Oh, you’ll know all right” was the answer. So we’ll watch and wait.

It’s all been an uphill struggle though, exacerbated by the fact that Nick has not had his TV or radio all week and has been sitting, slumped, staring at the wall when we’re not there to chat or take him out. I’ve spent hours on the phone trying to sort out the various technical, financial and bureacratic issues, on hold listening to Vivaldi, Beethoven and easy listening jazz until my ears are ringing. 
On Wednesday I managed to get the TV to come on but could only get one channel  - of all things, Parliament Live. It was the night of the big Brexit vote of confidence / no confidence in the Prime Minister. She'd scraped through and most people had left the building, so there wasn’t much to see. The red seats were empty, just four or five stragglers slumped on the benches in a similar attitude of apathetic despair to Nick, or maybe just dozing. 

“Oh blimey, you won’t want to watch this, Nick!”

“Yes” he said, “I do!”

So for the last three days he’s been sitting watching the Parliament channel instead of his usual diet of Netflix, radio 6 music and the Archers, and it seems to have kept him – well, if not entertained exactly, then occupied. He probably knows more about Brexit now than any living person, except that his short term memory is so bad that he won’t remember any of it.

It's been such a bad week in terms of Nick's movement deterioration, speech slurring, spillages and general loss of understanding that despite last week's lovely birthday, for the first time I have really wondered how much longer he can live on his own. 

But. As the week ends, I decided to have one more go at the television, spent an hour on the help line and, with the help of two patient and skilled virtual technicians, have finally and fixed the software glitch and paired yet another new remote control too. Yessss!! What a triumph. 

I’ve spoken to a proper human being at the DWP who says that Nick’s full benefits will be reinstated next week with a rebate going back to November, and although the NHS business service are intransigent about charging for a prescription that we still can’t trace, they say we don’t have to pay the fine and his exemption certificate is on its way and will cover any future problems.

And this - just when I was feeling most desperate, a dear friend got in touch out of the blue and offered to help with the costs of a new TV. I can’t begin to say how kind that was. 
Not just the thought of a practical solution. It felt like a miracle just to have someone reach out at the point when I felt most alone and unable to put one foot in front of the other or see straight.

We’ll probably struggle on with this one now it’s working again, but I’m feeling braver all the time about asking for help and accepting it.

I’m beginning to think that no-one could do all this without going half crazy, there’s nothing to be ashamed of if sometimes I can’t cope, and that mostly I am doing a good job.

Meanwhile Nick is in Netflix heaven, it’s the weekend, and if just for a short hiatus, I can breathe easier again.

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. 

Build me up, Buttercup

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

“I thought the dietician would be pleased with me”

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

Where the light gets in

The weather is beautiful, at long last! My flip flops have come out of hibernation and the coats and scarves have finally gone back in the cupboard after doing an in-out dance for weeks.

Nick sits indoors with his door into the communal garden shut and the curtains drawn. Every time I come in, I throw the windows open and let the air and the sunshine in. He says he doesn’t mind either way, but his hair is damp with sweat. HD trips your internal thermostat so it’s very easy to overheat, but he doesn’t notice.

We can wheel him in his chair right to the edge of the door looking out into the garden and it’s a good place to park for some fresh air and light, but really he just likes his habits and to sit facing the other way with his radio, newspaper and TV. 

Well – at least the TV and radio are working again and he can immerse himself in Netflix to his heart’s content. Science fiction, thrillers, science fiction thrillers, he can’t get enough and it’s all there at the fumble of a button.

He’s got to keep the sound down, though - we’ve had complaints again and the upstairs neighbour was making daily threats to Nick about the volume on his radio.

We got him some wireless headphones but he drops them, struggles with the tiny on/off switch or forgets to wear them altogether, so sometimes the radio does get turned up very loud. I was getting a bit scared as the carers reported that the neighbour was very angry, banging on the ceiling or coming downstairs  and shouting at Nick; on several occasions he’s tried to force his way in and they have had to prevent him. 

To my utter amazement and eternal gratitude, the housing officer, the one I thought was so useless earlier in the year, has taken this on and had a word with Vic upstairs and given him a direct line number to ring. Whenever there’s a noise problem he’s to call that, not threaten a vulnerable person who is not completely responsible for his actions. We shall see…but at least it feels as if someone is actually listening to us and is trying to help.

The other amazing thing is that since I really kicked arse a month ago, the carers have stepped up and begun to operate in a – well, let’s not tempt fate and say seamless fashion, no, it’s hardly that. But they are doing all the things they were always supposed to do as part of their support plan, and other little helpful things (like do the recycling, put the wireless headphones on charge, etc) without being asked. They look professional and seem to be taking a pride in their work. I think it has something to do with the increased level of care they are giving Nick as his ability to feed or dress himself decreases. Suddenly they are Team Nick in a way they never were before when it was just very basic duties. 

They have even taken over the storage and collection of medications so I don’t have to think about that anymore. It has taken six painful months but I think we are actually establishing a level of understanding and trust.

It is such a help, because I can see very clearly that Nick’s health is deteriorating. He can’t focus, he is loath to get out of his chair unless it’s to the loo or into the kitchen to get more wine, his movements are significantly worse. Poor love, he just can’t keep still; it is sorrowful to see.

What’s to do? Except be thankful that I don’t feel I’m carrying all these different and complex issues completely on my own anymore, and that Nick has his Netflix and we can take him out in the sunshine.