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.

Dealing with Overwhelm

I’m interested to know how other carers deal with overwhelm. The sense that it’s all too big for anyone to handle, let alone you. That it’s all coming at you like a meteor storm and you’re so tired you just want to lie down in the midst of it, sucking your thumb.

Seeing other people get on with their lives while yours is stopped in its tracks, taken over by the needs of a needy person.

Hi-jacked by your love for someone who isn’t ever going to get better. Trying so hard to make it right for them, but getting into fights along the way like a mediaeval knight trying to protect his princess from dragons.

There is so much coming at me at the moment that it’s almost laughable. Where do I start?

Nick’s neighbour is still on the rampage and as well as the smashed door incident there have been three occasions in the last month that I’ve had to call the police. The crazy thing is, there is no noise coming from Nick’s TV or radio anymore as the hearing loop is working and we took his bedside CD player away weeks ago. What exactly is he hearing to upset him so much? Now there is talk of re-housing and an Anti Social Behaviour Order – at the moment just talk though. While the police have been brilliant, the council are dragging their feet.

And Nick’s bathroom door handle is coming off again. Last time this happened, I phoned the council repair team who told me they didn’t class it as a risk, resulting in Nick getting stuck in the bathroom and having to be rescued by emergency services. Need to call them in again, when I can summon up the strength to wait on the phone for forty minutes. 

The carers have taken on Nick’s nutritional needs but the ABC of no-brainer risk assessment seems beyond them. Yesterday I arrived ten minutes after they had left, to find water all over the kitchen floor. It looked as if someone had put the washing machine on the wrong cycle again. Did they not notice, or have any concerns about Nick coming in to get his wine (which he does at very regular intervals) and slipping?

In the bathroom, meanwhile, the bottle of bleach was sitting beside the loo with its top off. Words absolutely fail me. These are adults, supposedly trained in health and safety and the care of vulnerable persons. Paid to do this job. Not very well paid, but paid more than I am to be on their case like this day in, day out.

Our landline is not working. I don’t know why.

And a relative I’ve never met from New Zealand is coming to stay with us for three days. I’m picking him up in an hour. I want to meet him – his dad, my cousin, was a very good friend of mine back in the day and we have a shared gene pool, thankfully on my dad’s side so HD free. But I have no idea how to even begin to entertain him, let alone explain how things are for us. Though I suppose if he is here for even a few hours he might understand the crack, and also why our house is so unkempt and grimy.

And there’s more, so much more, going on, but enough already.

The only reason I have time to write this is that I’m waiting at Nick’s for a delivery.

Anyway – worse things happen at sea, I tell myself. I have recently gone back to an old love and started doing an I Ching reading every day. It always calms me down and every time the message is absolutely spot on. Today it more or less told me to stop mithering and get on with it, basically “keep calm and carry on” in Chinese script. Someone somewhere probably has that as a tattoo. 

It also told me that I can’t do any more than I can actually do, and to step back a bit and let other people do some of the work.

Once again, this is the hardest one for me, and if you too are caring for someone, I bet it is for you. As I’ve said before, I would love to delegate more to other people but so much of the stuff I have to deal with for Nick is up to me as the legal deputy and next of kin.

However, I’m just gently flagging up the possibility that the world won’t end if I leave our visitor to his own devices for a couple of hours tomorrow and go for a swim, or ask a friend with a car if she could take Nick to the dentist.

Perhaps this is the only way to deal with overwhelm – just go really carefully, one small step at a time, and keep on walking bravely through the storm.

Letting Go

I have no illusion about being in control. You know those annoying gerunds that you see on the side of vans – Veolia, local authorities and the like: “Working in Partnership” “Bringing service with a smile” and all that guff.

Sometimes I think my strapline could be  “Running two households, badly.”

Being a carer depends on quite a degree of control, though. It’s the opposite of care-less. So much of the time the other person’s needs come first so you’ve got to have the self-control to deal with that. If they are complex needs then you have to be super in control, a puppet master juggling many different strings just to keep the show going, never mind any fancy tricks.

When you’re looking after someone’s life – their health and dental appointments, their care provision, their finances, their shopping, their domestic maintenance and their social requirements, their dirty fingernails and their hearing aid batteries - all those myriad tiny but necessary things - then you need at least the illusion of control. You have to try to keep a tight grip so that things get done.

You’re not just a puppeteer, you're a circus acrobat on a tightrope, defying gravity to stand on one leg and spin plates from a pole balanced on your nose, and what could possibly go wrong? 

It looks so precarious, but without missing a beat you catch another plate and keep on spinning.

Such skills! The audience applaud (although most of them are looking the other way because there is no spotlight on this tightrope and there are many entertaining things happening at their eye level.) 

The ones who do see it say "I don't know how she does it," and then go off for an ice cream.

There is little glamour in this circus act, and it can feel like a full time job, indeed can actually be one – just not a paid role in the traditional sense.

However skilled you are, that level of co-ordination has a limited life span. You can’t let yourself slip up, and if you do, it just means extra work to repair the damage. You’re bound to wobble, drop a plate or two, you’re only human; but dropped plates cost time and energy to replace. 

With every fall from grace this makes me more determined to keep better control, and with each new grit of the teeth I get more and more tense.

When I get tense I get cross and narky and can’t see any source of daylight and no end to the troubles ahead. It’s really rubbish for everyone, especially for my poor long suffering family and not much fun for Nick.

My counsellor tells me that control can only go so far, is only ever temporary and I must learn to let go. But how?

I think I used to be a fun person, light hearted and up for spontaneous jollies. Where is the room for that now though? How do I get everything done that needs to be done and still have space in my brain for carefree amusement? Not without careful planning, anyway. 

I know how pathetic that sounds, but the other night I went out to see a film, knowing that Nick was safe and the carers would be coming in soon to organise his dinner – but somehow they made a mistake with another cancellation and didn’t come. So he had no dinner and no medications and no-one to help him get undressed and into bed. I didn’t discover this til the next day when I found the food I’d labelled and left out for him untouched on the counter, the blister pack of tablets intact, and Nick perfectly chipper but wearing the same shirt he’d had on the day before and had probably gone to bed in.

Meanwhile the Red Cross have brought a wheeled bathroom chair that won’t actually fit in the flat. We weren't expecting it. Presumably Nick will use it to sit under the shower when the wet room is finally installed, only we haven’t got a date for that or any idea whether it will be weeks or months. 

I don’t know what to do with this chair or why they have brought it now without any warning, or who to ask for advice. At the moment the only place we can put it is under the communal stairs outside and hope that no-one makes off with it.

While I'm wrestling with this, Nick tells me that he has had an urgent text from his bank asking him to contact them immediately about his account which is in arrears. I did his online banking a couple of days ago and paid all the bills and there was money left in his account so that's worrying. 

Can I delegate the responsibility of dealing with any of this? I don't see how. Nothing in my brother's life seems to be straightforward and even trying to explain the various complexities makes my head start spinning like those circus plates. 

So it is not easy to think about letting go. Allowing a few plates to drop? Perhaps. Standing back for just a day? I'm up for it, but the endless to do list will still be there waiting. 

I want to know how other carers manage. Or are they just like me, madly juggling just to keep the whole shebang from cascading into total chaos?  

There are many things to be thankful for and oh so many things to laugh about if you have a black sense of humour.

But something’s got to give.

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.

Every Day SHeroes

I have moaned, oh how I have moaned, about my brother’s carers. And with good cause because they have driven me halfway up the wall.

But when the weather is as extreme as this – when the snow just keeps on coming, when the roads are so bad that ambulances are getting stuck and having to be bailed out by volunteer mountain rescue – when buses aren’t running, when schools are shut and routine hospital appointments are being cancelled – spare a thought for the legions of carers who carry on doing their job in the foulest of blizzards.

I worked for a care agency a few years ago during the last spell of memorably heavy snow (though I don’t think it was anything to compare with this Beast from the East) and on a day when school was closed and my husband worked in another town and was told not even to try to come in, my son couldn’t understand why I was still going to work.

“Because people need medicine and food and to go to the loo, even when it’s snowing”.  

Yesterday I trudged the ten-minute trip down the road to my brother's flat as if it were an Arctic expedition. It was mid morning and he was still in bed, the flat in darkness with the curtains closed and the cat was wailing for food. But to my amazement the carers had already been in first thing to give him his morning tablets (and, it turned out, already fed the cat, but you know what cats are like) and prepared him some breakfast. They came back a little while later to help him get washed and dressed, and I realised again just how grateful I am that someone else is doing all that – for all my mutinous thoughts of firing them and taking on all the care myself, there’s no way I could do it really. 

They said they were running about two hours late but just about managing to get round all the people on their list, prioritising anyone in need of medication. Food and personal care (that’s help with using the loo, folks) next, and then all the other stuff, like just making sure people were OK, would still happen but not necessarily to any kind of normal timescale. 

I was just impressed that they got there at all, because their average rota takes in several postal districts across the city and even on quite big roads the gritters can’t keep up; even the small amount of traffic is crawling along pathetically, the snow keeps coming down, and honestly it is mental out there.

So to all the carers and health workers who can’t just look out of the window, decide they’re having a snow day and go back to bed – who put on their big coats and boots and simply get on with their work to help the frail and needy whatever the weather, a massive round of applause and my heartfelt thanks. You are brilliant.

It might be a snow day for some of us but for many people it’s really a matter of life and death.

Gratitude

Last week I started a deliberate project of being thankful for small things, because so many of the big things seemed out of my hands.

Also, I just got so sick of being permanently angry and complaining, so worn down by continual difficulties and obstacles, that I felt utterly defeated. What was the point of all this effort? 

I just started expecting the worst. When that happens, you become brittle, angry and permanently on the defensive. Even when you truly believe that the next transaction will go smoothly, it’s as if you give off an invisible signal inviting trouble. I can’t help thinking that the expectation of conflict can become a self-fulfilling prophecy.

There had to be another way to deal with it all. 

I made this list of reasons to be grateful to Nick’s carers, and it was an interesting thing to do because I started appreciating them more.

I am grateful that they come three times a day to give Nick his tablets so he gets the regular medication he needs.

I am grateful that they nearly always make his bed nicely.

I am grateful that their visits break up his day when he might otherwise be alone.

I am grateful that they feed the cat.

I am grateful that they are (mostly) reading the menu book now and following the food preparation requests.

I am grateful that they do the washing up and vacuum the carpet.

I am grateful that they are starting to put card and plastics etc. in the recycling bag.

I am grateful that it takes some of the load off my shoulders.

I am grateful that Nick seems to like them.

I am grateful that things seem to be gradually improving.

Have they suddenly picked up their feet and transformed magically overnight? No, not really. When I visited yesterday evening they had not switched off the washing machine or taken the damp clothes out and hang them to dry, as politely requested the night before. 

They seem to have a problem with giving Nick a pudding (which I have called by various names, “dessert” “sweet” and even specifically named, “chocolate mousse” or “trifle”, all to no avail) 
It just seems to be an alien concept to them.

He has developed a really sweet tooth over the last couple of years and craves chocolate; left to his own devices he would polish off a four-pack of Snickers bars after tea every night. It’s weird for me to see this when chocolate bought for the children used to sit mouldering in his cupboards for months at a time because he just wasn’t bothered himself. Now he loves it, but those big chocolate bars are a choking hazard as well as terrible for his teeth.

Luckily he also loves sweet, creamy desserts, which are actually something that dieticians recommend for HD because they are calorific and easier to swallow.

So we buy lots of these and I write it in the menu book every time asking the carers to give him a dessert after his main meal but it’s hit or miss whether he gets something or not.

One day last week I saw the lunch that they had prepared for Nick with a slice of blackcurrant cheesecake nestled carefully in the same bowl as his fish pie and chopped broccoli.

I had to add something to the list:

Just when I thought I had seen it all, I am grateful to the carers for surprising me.

Nick cracks me up.

We had a meeting with the social worker yesterday to review the current care provision and Nick’s increasing health needs. He’s getting a new chair, courtesy of the wonderful NHS, a big black sci-fi thing that will help position him better to sit, as he spends most of his waking time now sitting at his table to read, eat, listen to the radio or watch TV. He's still got the old-lady's high backed armchair I bought for £40 at a second-hand shop, and it's making some alarming creaks but is still miraculously holding up. 

When he wants to move he shuffles the whole chair with what looks like a huge effort, using his elbows for leverage, not lifting his bottom or even trying to stand. I worry about pressure sores from sitting in the same position all day do the new chair should help. It will need someone to help him, though as it will require locking into position by another person. I'm not terribly happy about this but the physio from the enablement service assures us it's the best option for his needs.

Meanwhile, the speech and swallowing therapist has recommended that he gets a lot more help with preparing and serving the right food, and for carers to be with him at meal times where possible to avoid the risk of choking.

The carers? This lot? It still seems to be a struggle to get them to give him some cutlery to eat his dinner. Or to make sure they are not trying to microwave a frozen fish pie on the Defrost setting, which I found someone doing the other night. Or to put the hoover away instead of leaving the flex trailing right across the doorway where he could trip over it. Nick says he doesn’t think any of them can understand what he’s saying as they don’t seem to take any notice.

The social worker was on holiday when I rang to flag up my concerns. Now I told her some selected highlights of their misdemeanours and she understood my alarm. We discussed the possibility of finding someone more to our liking through Direct Payments, not that I’m expecting that to be easy from what other people have said. But really, they are the pits. I didn’t go into anything like as much detail as I could have but she got the idea.

“What do you think about the carers, Nick?” asked the social worker. Nick, true to form, says the exact opposite of everything I have been telling her, or that he has previously said to me.

“I think they’ve been very good.”

Really, he cracks me up.

Afterwards I felt a bit bad about having dissed them like that to the social worker, but then last night we popped round to see Nick and found the main entrance door to the flats wedged open with a stick, the keysafe code visible for all to see, and the door to Nick's flat wide open. This was eight o'clock on a Friday night in a not totally respectable part of town.

We walked in and Nick, deaf as a post, was sitting watching TV with his back to the room and the two carers were gossiping in the kitchen. They jumped a mile when they saw us. 

For goodness sake! Are they nuts? Really stupid? Or just over worked and under paid with the bare minimum of training?

Whatever, I stopped feeling bad and started the search for another agency.

An Unexpected Kindness

My heart sank when the upstairs neighbour came round to complain about the noise. It’s happening all over again, I thought.

I invited him in to meet Nick. At least that way, he could see for himself that Nick is not well, and Nick could understand the impact that his loud radio has on other people. The neighbour turned out to have tinnitus like me and gets very affected by external noise. He didn’t want to make a fuss, he said, but it would really help if the volume wasn’t turned up so high that vibrations were buzzing through the ceiling.

I stuck one of my dayglo post-it notes to the wall reminding him to keep it down, and “I will” said Nick, which is his constant saying now – totally meaningless, he says it about the wine (“Please pace yourself, bro”), the carers (“Nick, you must tell them what you want”), the radio, the reminders to check his phone for texts, you name it.

“I will,” he says, like some bridal ceremony on a loop, but even if he thinks he will I know perfectly well that most of the time he won’t. (“I forgot” is the other most popular saying.)

So I have been fretting a bit about the radio as well as all the other stuff I’m worrying about, since both Nick’s physical condition and his mental capacity seem to be deteriorating almost in front of my eyes. The carers are a still a huge worry; some of them have been really keen, reading the daily notes and making sure Nick has his non-slip mats and good grip cutlery to help him eat his beautifully chopped up meals. They have made his bed every time and someone has even been making a stab at the recycling!

Others are just not listening, or not looking. Why did they give him dry toast again this morning when the clear instructions were for two of those sticky malt loaf things that he likes, that the dietician recommended and that were in full view on the kitchen counter? Why was Nick wearing socks with his toes sticking out, bits of last night’s pasta still curling up on the seat of his chair, and a shit smear on his bathroom basin that had been there for three days (I deliberately didn’t do anything about it as I knew someone was coming in to clean today, and I wanted to see if they would notice. Sure enough, they said in their notes that they had thoroughly cleaned bathroom and kitchen, but the shit smear was still there. I felt like putting one of my post-it notes beside it with a big arrow, but in the end I didn’t.

It’s not good enough. It makes it hard to relax. So I feel anxious all the time with that awful infectious dread that has no exact source but just grabs you in the chest and sits there. I know that I can’t sustain this and do the real work of caring for Nick but it’s a real effort to lighten up and switch off, or move into another gear.

But things do give me hope. In the space of a few days, which is often the way, we have had the extremes of understanding and kindness.

One, the business exemption checking service, who wrote a stern letter billing Nick for willful mis-use of a form at the dentist’s. Sorry??

Long story. But to cut it short, Nick’s dear friend Dave from school had been alarmed by the tale of the wobbly teeth. He arranged for Nick to have an appointment with another old school-friend who is now a dentist.

This happened while I was away for a couple of days, so Simon took Nick. He said it was very moving to see the two old friends meeting again after all these years. Nick needed a small filling and had a scale and polish, with a reminder to brush more regularly and stay off the Snickers bars last thing at night. We didn’t think any more of it until this letter arrived.

Apparently Nick had signed the exemption form saying that he received ESA (and therefore did not pay for his treatment) when actually since coming to Sheffield he only gets contribution based ESA as his finances were so tangled that the income related part of it has never been sorted out. Another thing I’m still chasing. So anyway, he should have paid the fee upfront and shouldn't have signed the form. 

Simon didn’t realise – he just assumed that Nick didn’t pay for his treatment – and apart from a few flashes of lucidity, Nick will sign anything put in front of him these days. So that was that, but now, for his perfidious attempt to dodge the system, Nick is being charged a sizeable penalty on top of the actual fee.

I wrote at once to explain that Nick has a serious impairment that affects his ability to process information and of course this was a mistake, our sincere apologies, we will pay the bearer forthwith. But that wasn’t good enough. They replied that we would need to send a letter from a medical professional confirming that the illness in question would have that effect, and one form Nick giving his permission for me to discuss the case on his behalf. As well as prompt payment of the penalty along with weekly interest that was now accruing. If they decided that there was justification enough to waive the penalty then they would perhaps refund it.

Give me strength!

I have sent the proof they asked for and paid the original fee – stuff their penalty! –

and fumed to myself about the extra time it takes up to contact the GP and ask her to write the letter (an email won’t do), and also compose and print out a letter for Nick to sign. Not for the first time, I wish people- organisations, I mean – had a clue about the enormity of work involved for the average carer to just keep the wheels on the road. They genuinely seem to think that we have nothing better to do than gather six different forms of evidence and proof of I.D in hard copy, then send them all first class with recorded delivery.

If only there were some shortcuts for all this admin so that I don’t have to waste another afternoon jumping through other people’s hoops.

And then, just as I was feeling really low and that the milk of human kindness had definitely gone sour, I bumped into Nick’s upstairs neighbour at the paper shop.

“I’m so sorry” he said, “I did some research on your brother’s illness and it’s awful isn’t it? And he’s not going to get any better. Poor chap.”

He asked if there was anything he could do to help. You’ve just done it, I said. You’ve taken an interest – you’ve cared. That means so much.

It means so much that another person gets it, understands a bit about the situation. I realize that maybe there’s something I can do to ease my frustration with all these time-munching organisations. Who knows, it might make a difference and it will make me feel better.

So, every time I have to deal with the council, the benefits agencies, anything official like the dental exemption checking service, I am going to include a leaflet about Huntington’s in the envelope. I’ve started doing this with all my official correspondence. Just so you know, guys!

Memo for a new month

Is it possible to sack your care providers? I wonder as I send off another Howler. Actually I have stopped bothering with Howlers. It’s all short, sharp and to the point. The service is unfit for purpose.

On Monday I made another complaint after I went in and there was no lunch left out for Nick at all. There was a slab of home-made quiche in the fridge (not mine, I hasten to add but some that my kind neighbour had brought round) and in the communications book I had asked lunchtime carers to put it in a bowl with some potato salad.

I don’t know why this didn’t work but it didn’t.  I knew that the member of staff who’d been in at lunchtime was the one who’d been there with the manager the night before and that the manager had been explaining to him how the book worked, but it didn’t seem to have made any difference.  It’s not just the book, it’s in the care plan to give Nick something to eat – what is going wrong?

I have been trying to keep really calm and neutral when talking with Nick about the carers because I want him to make his own mind up and not just say what he thinks I want to hear. These days it can take him a while to vocalise how he feels about something. 

If he likes them then it doesn’t matter so much about the food or the unlocked doors or the bad timings, I say to myself. But I’ve yet to see any real empathy or attempt at a rapport, especially when he says that the person in question – the one who came in and didn’t leave any lunch – does not listen or try to understand what Nick asks, just does his own thing regardless.

Over the last week in particular, the whole picture has driven me almost mad. It’s been harder and harder to lift my head above the waters and find some point of equilibrium. I feel like just sinking to the bottom of the ocean, curled up like an anemone. But that just won’t do. For a start, who would look out for Nick then?

So I have to find some balance. I long for comfort, reassurance but not the soppy kind, more the vitamin shot that helps you carry on way past what you thought was your burn out point. To believe that I am worth it, as they say in the ads. Some Nourishment for the soul in radical times! That’s what is needed.

By last night things seemed to be settling down a wee bit and I think they are beginning to understand the score. I found a note saying, "Please bear with us as we are only getting to know Nick" which touched my heart and made me feel a bit bad about making such a fuss. Then I thought, hang on! They've been coming here for two months. That's actually quite a long time in social care. Long enough to have understood where the bloody bin bags are by now.

But on Monday I just felt fed up. I don’t feel 100% safe leaving Nick’s care with these guys. 

I phoned social services and left a message telling them I was extremely unhappy with his care provision. That there were some serious safety issues needing immediate attention.

There wasn’t anyone picking up but I got a recorded message saying they were very busy helping other callers but someone would get back to me within the hour. I think you might guess the outcome of that one. I called them again a bit later, and then again first thing yesterday morning. 

It's Thursday now, and a new month. I've still heard nothing back. Maybe their quota for responding to people in January was full. Maybe safety issues are not a priority at the moment. Maybe I am already on some secret file labelled "Complaining Madwoman." 

And maybe - yes, maybe - they are ridiculously busy and overstretched. But it's their job. To uphold the rights of the individual and protect the vulnerable. It surely shouldn't just be down to me and other carers like myself to fight for these things?