Little Big Fears

9am I’ve had to call in a plumber to look at Nick’s toilet, which is tilting at a strange angle with the cistern coming away from the wall. We’ve been here before…at the previous flat, where twice Nick pulled the washbasin off the wall and then dislodged the toilet too in the space of a few weeks.

I recognise the plumber, he's been here before when the wet room was first installed. He thinks it's a simple job but I offer him a hot drink and we have a joke about how he can stomach swigging tea while poking around in somebody's soil pipe.

An hour later, he’s sitting on the floor amidst slabs of dismantled plastic, phoning his gaffer. He can put everything back today and refix it against the wall but it will only be a temporary solution. The whole thing is coming away not just from the wall, but actually parting company from the huge bolts going deep into the floor.  It’s a solid, specialist self-flushing toilet for people with impairments and he installs them all the time but he says he’s never seen anything quite like this.

“It must have taken some force to move them bolts”.

Yeah.

Welcome to our world, I say, standing in the doorway where I notice the handle is also starting to come loose again, the screw heads working their way out like worms after rain.

The plumber has asked his gaffer to call the OT and advises I do too, to make sure she knows this is urgent because it’s only going to hold for a limited time and then the whole thing is going to go. Horrible visions of Nick on the floor, collapsed amongst the ruins of a broken toilet in a pool of piss, or worse.

11.15am The plumber has gone, I’ve left an answering machine message with the OT and I’m drinking coffee with Nick who had slept soundly through all the drilling and clanking. I’ve unearthed some wonderful old photos of us as children and we’re having a giggle at our clothes, woolly balaclavas and cardis knitted by our gran, Nick’s tartan bow-tie (what a thing to do to a child, he was only four) and my gap teeth.

The carers have not yet arrived to give him his shower and breakfast. Yesterday they didn’t turn up at lunchtime at all. Luckily I was around and could nip over and make him a late lunch – 3.30, practically tea – and give him his tablets.

The care agency weren’t sure what had happened. Their timings have been going really off again and I’m worried.

We’re going on holiday in two weeks’ time – me, Simon and Dill, the first holiday we’ve had together in years, an actual, proper holiday - but I don’t know if I can do it. How can I leave him like this? 

His lovely PA has said she’ll look after him and that was really the thing that made me feel able to go for it in the first place, but oh the things that can, and do, go wrong. Today being a fine example.

I'm not being pessimistic. Just, this is how it is. When the carers are late or don’t turn up at all, when another thing suddenly gives under the force of Nick’s super strength, you’ve got to sort it out.

And then the sheer range of minor crises that happen every single day – the lost hearing aids, the hearing loop not working, the fall, the spilled wine that has drowned his phone, the remote control dying, the payment not going through due to insufficient funds, the neighbour banging at the door and swearing at the carers outside – all of these things are just like background music to the daily pattern of Nick’s life. They still have to be dealt with.

It is a big ask for someone else to take on.

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. 

Channelling Madonna

“If we took a holiday…just one day out of life…it would be so nice”

Well, I am channelling Madonna and going on holiday on Monday. Four whole days and nights away, out of the country, in the south of Italy with two of my oldest friends. 

Lucky, lucky me.  Many carers are on the job 24/7 and get no break at all. A terrifying percentage of carers have not had a proper break in years.

Just think about that, if you are lucky enough to be employed at a job that gives you 3 or 4 weeks’ holiday time; caring is a job too, often on top of an actual job and with minimal pay or recognition for your work let alone sick or holiday pay. The relentlessness is beyond exhausting; there is no clocking off and even if you do get a bit of respite time, it doesn’t last long and because you have full responsibility for the well-being of an extremely vulnerable person, shit still happens whether or not you are on holiday so you can never really relax.

I haven’t had time to look forward to my little break or even think about packing, because this last fortnight has been one long rollercoaster of busyness and emergencies with Nick. So, like any carer who is lucky enough to get a bit of time off, getting ready for a holiday means getting a thousand contingencies considered and prepared for so that you can actually leave the building. Sometimes it really feels easier to keep going and carry on as you were. Exhausted but present for when things go wrong, or just thinking ahead to make sure that they don’t.

Leaving Nick is not that simple. There is so much to do and to plan in advance. The carers will give him his tablets and meals and if the place is filthy on my return and the bins full, with fruit flies buzzing around empty wine boxes all over the sticky kitchen surfaces, so be it.

It’s the unknown quantities that bother me. Not fussy hypochondriacal fretting but proper down to earth worries for good reason. The handle fell off Nick’s bathroom door on Thursday while he was inside, and it was a good thing that I'd come along early to take him to the dentist as otherwise he’d have got trapped in there again.

As it was, I had to use a lot of ingenuity and a fork to twist the lock into place and let him out.

I called the council repairs team and they agreed that it was an emergency and to send someone round immediately. I stayed at Nick’s all afternoon until after 6 but no-one came.

My angry phone call yesterday (after almost an hour on hold. God. If someone could take THAT away from carers) got a promise that they would definitely fix the door before 6pm but when I went in today the door was still unmended. The temporary doorstop I’d made out of a bag of cat litter wrapped in bin liners gaffer taped to the lintel had already had it – nothing stays intact around Nick for long – so I have had to make another one and will phone the council again on Monday morning. Will they pick up right away? What do you think? That’s another forty minutes of my life I won’t get back.

Another worry is the fact that the housing officer at the council has issued a crisis log to Nick and one to Vic upstairs to document any new incidents. Although the hearing loop was working well so that there was no sound coming from Nick’s TV or radio, Vic was still on the rampage and we have had several more violent outbursts and more police calls.

Last Monday I bumped into him coming out of the building and thought, oh sugar. But I stopped being scared of him when I realised that his mental health is clearly on the edge; he kept repeating the same garbled rant about a letter from his GP, and when another neighbour intervened to say, “Vic, I live next door to Nick and I can’t hear a sound coming from his any more”, he got angry and told the man to back off. But I felt vindicated and delighted that someone else was backing us up.

It’s always been all too clear that Vic is distressed but lately I’ve been scared of him. Now he just seemed rather pathetic, and in his own way as vulnerable as Nick. Well, not anything like as vulnerable as Nick, for one thing he can walk and move about freely and speak clearly and act for himself. But he’s not right, that’s for sure.

I had pretty much made up my mind that he must be hearing noise from somewhere else altogether to upset him so much, or (more likely) completely hallucinating.

Then on Tuesday I popped round with some clean washing and it all made sense. I could hear the bassline as I reached the entrance to the building, and coming into Nick’s flat it was deafening. He had somehow found an old battery operated radio and got it absolutely blasting out at top volume beside his bed. All the windows were wide open and the curtains were practically vibrating with the sound, but he was fast asleep. After all that!!! I could cheerfully have strangled him.

He does dimly seem to understand why I have taken this radio away too as well as all the others (how did he have so many! The obsessive side of Huntington’s, combined with always being a boy who liked gadgets) but really doesn’t seem to get how important it is that he honours his side of the bargain not to make too much noise. I have been furious with Vic and scared of him too for making such a fuss, but if he’s been hearing the kind of volume I heard on Tuesday then frankly I don’t blame him.

Meanwhile the carers, who are supposed to do the evening call at a time specific 8pm to get Nick into his pyjamas and give him dinner, have been coming earlier and earlier and I have already complained that they’re arriving too early. Today they rang the bell at 5.55pm. I had gone round with the weekend paper and Nick had only just woken up from his afternoon nap. Again, a good thing I was there as I met them at the door and told them to come back later as this was far too early. I said I didn’t care what their rota said, it was contravening the instructions in the support plan (true) and to phone the office if they had a problem with it. I suspect though that they had got a long gap between clients and hoped to get away with coming here early so that they could make up the time.

Nick would have been befuddled and just let them come in and give him dinner a good two and a half hours earlier than his body clock would like, in his PJs like a baby at 6 while it's still light outside, and then left on his own for the evening before he even realises what’s happened. It’s not on.

I sound like a dragon but honestly I need to be, because the point I hope I’m making (and forgive me if I’ve laboured it, you can see that I could do with a break) is that things DON’T happen seamlessly. Even on a good day with no actual life-threatening disasters, there is always stuff like this that should be going according to plan but doesn’t. People paid to do their jobs, their “you had one job” roles, who don’t do them. Who sorts it out? Me. And if I’m not there to fight for Nick, who will be?

And now I am about to leave things to take their course for a few days and everyone says don’t worry, it’ll be fine, just go, and I’m sure it will - but you can see why I’m anxious, can’t you?

Firefighting

The mornings are fresh and light now and if the weather is not exactly warm, trees are budding and flowers blossoming. Nature’s sap is rising and it’s heartening to see Spring on its way but I’m feeling so tired.

My heart is yearning for travel and new places. The thought of a holiday brings tears to my eyes. I want to organise some kind of break – for me and my boys but also for Nick, just to breathe some new air, but we are so busy fire-fighting to stay in one place that it is hard to plan ahead.

I need to renew Nick’s Blue Badge this week and drive thirty miles to pick up a temporary loaned wheelchair from the Red Cross. He urgently needs a new one as the wheelchair I got him when he first arrived in Sheffield is literally falling apart. He used to go out on a Saturday with a carer from my old agency but the wheelchair is so heavy and unwieldy, with a footplate that can suddenly swing out of place, and Nick is so prone to tipping backwards, that she slipped a disc using it and was off work for a month. 

We discovered that it was not strictly legal for a carer to use equipment that hadn’t been serviced, so even if she felt able to return, she is not insured and simply couldn’t do it any more.

We could just buy another one but we’ve been advised not to do this by the neuro service as Nick’s needs are so particular that they say he needs to be assessed by a multi-agency team. He’s on the waiting list for an assessment but that’s a long, long list. So for now we’re struggling on with the old warhorse, it hasn’t fallen apart just yet and it is a lifeline for him to be able to go out.

Meanwhile, I'm pleading for another service review with Social Services and the care company because a new support plan was drawn up at the end of February to reflect Nick’s changing condition and his increased difficulty with eating.

Carers are supposed to come at a **Time Critical** 8pm every night to administer meds, get him changed into night wear and prepare a hot meal, then stay with Nick while he eats it. 

I see him every day and Simon or I will go in every other evening and often do the dinner ourselves so we can all have a meal together, but we can't be there every single night so we try to work around the carers. 

They’re not coming at 8pm though: since the time critical plan was issued, they have been coming without exception between 6.30 and 7pm. We’ve almost made a game of it, popping in at my old time of “just after the Archers” and more often than not the carers will have been and gone and Nick will already be in his pyjamas. 

It’s too early for him to eat, so of course they are not staying with him – and even if they do stay in the flat while he eats, we have usually found them in the kitchen next door looking at their phones.

When I challenged one of them about this, she apologised for being late! 

It is still very hard to communicate with most of the carers and I have still not figured out how much they do understand. One of them comes from the Ivory Coast so I've been attempting to speak with him in French but my French is probably as iffy as his English so it's kind of desperate measures. One day, I think, I will write a sitcom about all this and it will be ten times darker than anything Jo Brand has yet to come up with. 

She also said that they hadn't even known anything about staying with Nick while he ate, and this was news to her.

We had a review last week for the social worker, two members of the neuro team and the care company manager to see how the new regime was going. I was so relieved to think we could discuss Nick's care needs and iron out these problems together, ensuring a smoothly running joined up service that kept him looked after and safe. Just one little fly in the ointment - the care manager didn’t turn up. Even though the meeting had been booked in since February. 

Now we have to arrange another one, trying to find a time that everyone can do, and apart from the pain in the arseness of that, it is extremely stressful for Nick.

And me. As a battle-weary sister exhausted from constant chasing and complaining for every little thing, it was a wonderful thing to hear the social worker tear strips off the care company for the manager’s rudeness in not turning up to the meeting or even letting anyone know he wasn’t coming. She was really furious at him for wasting everyone else's time, and rightly so. 

Welcome to my world, I thought. But also - thank you so much for taking this on. I am so unused to someone else doing that, and it strikes me that this is what family carers do - we take on so much of the fighting to be heard or taken seriously as a service user, so much of the legwork, the chasing up and all the in-between stuff that somehow doesn't happen otherwise. 

She and the neuro team physio both grimaced when I said, Don't Social Services and the NHS teams automatically communicate to each other about service users? Especially the ones with complex needs? 

I had naively thought that they would. But both their services are totally overstretched and their case loads ridiculous, so apparently not. We are lucky to have this support but it is in no way joined up, and the pulling it all together and being in touch with everybody is, it seems, my job. 

The overall co-ordination and the fire-fighting is down to the person's family, and they all say Nick is lucky to have me. 

No wonder I'm tired. You have to be fit to do this job. Pass me my imaginary length of rope and my fire-fighter's helmet, I'm going in. 

Things Can Only Get....Different

Ah, the hope and excitement of that song “Things Can Only Get Better” when Tony Blair was elected in 1994. I can remember exactly where I was, can you? Sitting on the dry grass outside the People’s Palace in Glasgow with friends, one of whom had been up half the night counting votes. We were so excited to be part of a new generation of youth and hope, and like so many others, we really believed that things were going to get better.

“Can you remember where you were and what you were doing on that day?” I ask Nick, half anticipating the answer.  I really want him to remember things, to know what I’m talking about, just keep that flame of connection and engagement alive, but his memory is so fucked up these days. It’s too big a question for him.

“I’m not really sure.”  

Things are not going to get better, that’s plain. Politically, well, that remains to be seen because this is not a blog about Brexit! But in terms of health and mobility, memory and cognitive function, it’s getting a whole lot worse.

Yet I am (mostly) optimistic. There is still so much to be glad about. Lately, I have been making a nightly review of the day and all the things to feel grateful for, and to my surprise, many of these revolve around Nick. The fact that he’s still here at all, that he is such a trooper, so stoic in the face of his illness and for all that life has dealt him, such a cheerful soul. He drives me absolutely potty sometimes but his courage just knocks me sideways.

He has had his new chair for a week, but the physio and ergonomic specialist who were supposed to be talking through how to use it had to cancel their appointment because of last week’s snow. So we’ve probably been using it all wrong but he’s been whizzing about in it very happily and says it’s really comfortable. I am not sure what to think – the castors that are supposed to lock it into position seem to come unlocked with the force of Nick’s spasms, so he sometimes goes shooting across the room. The other day I found him stuck in a corner like a big capsized beetle, legs flailing, dangerously close to knocking over the TV and unable to move himself forwards.

With luck, we will sort some of these issues out when the physio visits later today, but then we have the problem of the carers… The plan is that they will lock Nick into place at his table at mealtimes, prepare and serve a meal, make sure he is able to eat it safely and help him if necessary, wait for him to finish and then move and lock him back into optimum position to watch TV. Hmmm.

Yesterday I had left my usual instructions in the daily menu book. 

“A microwaved ready meal of Nick’s choice” was the dinner suggestion. After doing a massive shop at the weekend, there were loads of microwave dinners in the freezer, which the carers are normally more than happy to prepare as it saves them the faff of cooking anything from scratch – and I don’t expect them to, they don't have enough time and that’s my job. Eating has become yet more difficult lately, he can't manage more than a small serving and I'm even having to cut soft pasta up with scissors and feed it to him.

But I was a bit surprised to see what they had given him – a two person portion of sweet potato mash that I’d put right at the back of the vegetable chiller in the fridge, thinking it would go well with some soft fish or mince next time I came in to cook for him. Enough for two, maybe three future meals. 

But the carers (who perversely, can’t seem to find things I’ve very carefully laid out in plain view) had found it and without asking him for his choice, just served it up to him on its own in a bowl, no fish, no nothing. And guess what? He had absolutely yummed it. First thing he's managed to eat on his own, and finish, in quite a while.  

So, honestly, what do I know???

I don't hold out a lot of hope for their ability to manouevre the chair correctly. I think we have a rocky old road ahead there. But maybe in some weird unfathomable way, they have an instinct for what could work, and maybe I need to let go of my control freak reins a little and trust that they can do it. 

Things may not be going to get better but I tell you what, I live and learn.