My Aim is True

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

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

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

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

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

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

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

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

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

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

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

How Come You Don’t Call Me Anymore

The thing I find hardest to watch happening to my brother is not the awful chorea - and Nick’s is really severe - not the coughing or the choking for breath or even the falling over. It’s the passivity. He still has strong views about some things, like wanting to watch the rugby on TV, or asking me to buy a particular kind of chocolate that he likes, or being very determined to send his children some birthday money. But mainly he seems content to have life happen to him.

Enviable in a way, maybe, for those of us who struggle constantly with shoulds and oughts and want to’s and what ifs – you could say that Nick has transcended all this and found his Buddha Nature.

It is infuriating beyond telling, though, that communication has ground to a halt. He keeps his mobile with him at all times and one of his tics is that he needs to have his phone and a little black cube clock always at his fingertips so he can reach out and touch them. He probably does this twenty times in the course of an hour – he just doesn’t actually look at the screen.

We have spent hours changing the ring tones, getting the buzzer as loud as possible, reminding him to check his phone every hour (and he knows what time it is because of the massive station clock on the wall and the radio programmes he listens to all day) but it’s no use. He has the phone near him as a comforting thing, but not actually a thing with a use.

“Nick, I’ve sent you three texts today. Didn’t you see them?”

“Not yet, no”

“Have you checked your phone at all today?

“I’m sorry. I forgot”

He has a specially adapted landline with a flashing light and an extra loud ring but he either doesn’t hear it or says he can’t get to it in time. If we put it too close by, he just knocks it over, so it has to be put out of immediate reach as he needs it to stay connected to the citywide alarm service.

This time last year he was still picking up the phone to call me, sending me texts or replying to mine, and generally in full communication although he was increasingly finding it hard to press the right buttons on the keypad. Texting must be really hard for him and I keep searching for a solution but the real problem is that he just seems to accept a world where he sits on his own all day and no-one gets in touch.

It is immensely frustrating on a practical level because he is effectively a prisoner. He can’t go out on his own anymore. If the carers don’t turn up for some reason (which they didn’t the other day and thankfully I popped in unexpectedly) then he just accepts it.

On busy days when I might not have time to visit, I just want to check in and say hello and see how he is, but it is one way. He doesn’t reply.

The trouble is, I’m not just fretting for no reason: the danger is real. He has accidents, drops things, smashes things and hurts himself. He’s not really safe to be left alone for long periods. How can I know he’s OK? The only time he gets in touch now is when he thinks he’s running out of wine.

At his request, I stopped hiding the week’s worth of wine and put it all in one place so he knows it is there and does not wake up panicking – but this means he has no reason to keep in contact. 

It’s as if he doesn’t care one way or another and I find it so upsetting. I know he does care and is delighted to have some company but it’s the apathy and closing-in of the illness that is horrible to be around and for all the changes we’ve been through, this is the hardest to bear.

As someone who’s known him all his life, watching him change like this feels painful all the way. I can’t get used to it and I don’t want to. But it’s the way it is and I must.

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!

Second that Emotion

There can be a level of autism in people with Huntington’s as the brain’s more complex functions begin to erode. I see it with Nick in conversation as he vaguely recognizes that some response is required and he tried to offer an appropriate comment. 

For a long time when he was living up north and appeared fairly well in many respects (and to the point that I often forgot about the illness), he would infuriate me on the phone; we’d be talking as normal and I’d tell him something funny or sad but it was as if he couldn’t always tell which was which.

“HOW Funny” he’d reply, or “HOW interesting” – sometimes interchangeably, as if at random. I felt maddened by his pat response. We had been friends and confidantes for so long and this reaction seemed so insensitive, like he wasn’t really paying attention. Now I realize it was the encroaching effects of the disease, slowly stealing his emotional capabilities and empathy.

One time I had to tell him that someone we had both known since primary school had died suddenly, leaving two young children, and I was feeling very shocked and upset. I thought Nick would understand but he listened and then said,

“HOW funny. Guess where I went for lunch today?” 

These days I don’t look to him for an empathetic response – if it suddenly comes along, that’s great, but I don’t expect it. His world is shrinking around him and the thing that seems to dominate emotionally is where and when he is going to get his next drink.  

It’s not that he’s a lost cause; he can still be thoughtful and sensitive and make sweet gestures; he was determined to buy people Christmas presents, for instance (with a bit of help actually getting to the shops and paying for things) and he clearly loves us, his children and his cats.

But it’s hard to tell what he is actually feeling, and perhaps that is a mercy too – that as the illness gets worse and even eating, swallowing, sitting in a chair become Herculean tasks, the brain shuts down its emotional responses to concentrate on the important job of just surviving.

A Fine Vintage

It's what I’m wishing for in 2018, a fine vintage year of mellow fruitfulness. One that lingers on the palate and in the memory - sociable and warming but easy on the pocket as well as the old grey cells. A Grand Cru, Chateau Pearson 2018. Well, we can only hope!

Christmas seems such a distant memory, even though we’ve still got the cards and decorations up, and all the excitement and bonhomie of New Year too.

Today it’s drizzling and my head is fuzzy and it really feels like that sudden unwelcome bump back to earth and back to reality.

I bought Nick a new diary for the year ahead, and put the 2017 one in the recycling. Then I took it out again as I realised he has kept all his diaries for the past fifteen years and maybe he wants this one too. A record of a year in which he made no entries himself but the pages gradually filled up with appointments for health professionals and all the details of his move to Sheffield. Then: benefits advice lines, social services, council tax, housing and emergency accommodation officers, builders, plumbers, support workers, care providers, hospital, dental, medical appointments, butcher baker and candlestick maker and Uncle Tom Cobley and all. The strange itinerary of someone whose body is no longer entirely their own affair.

There are some fun things there too – his weekly outing to the pub or the cinema with Simon, his Saturday lunch with one of the carers from my old firm, the odd drink with his old friend Dave.

I'm determined that this year will have loads of those and we'll be kicking off with a party next week to celebrate Nick's birthday. 

But in the meantime, here's the sobering reminder of how much things have changed. The diaries tell a story better than words. In 2004 he was running a business and doing some catering work on the side for his (then) in-laws. Married. Cooking. Driving. Not socialising much, a toddler at home and another baby on the way, a hard working family man.

By 2013 he was living alone, separated but seeing the children at weekends, still working and driving but not for much longer. This was his manic phase, making sense of life by writing endless to-do lists and ticking them off.

A year later he was still making lists but his writing is wobbly and wild. By 2016 he had stopped making lists and his diary lay on the kitchen counter open at the wrong week, no entries at all unless they'd been made by me. That's when I knew it was time for him to leave. 

This year? There may be trouble ahead, as the song goes. There are certainly physio and support service appointments and, as Nick's mobility has taken a visible nosedive lately, probably meetings with health professionals to talk of electric chairs and hoists. All this will be in the diary. 
But I am planning lunches, outings, bringing friends round to say hello (my friends - shamefully, many of them have not even seen Nick in the time he's been here. Not for want of trying but because it's been difficult. It's hard enough to get to meet my friends full stop these days - how is it that we all seem to have got busier?? - and Nick's care needs and somewhat unsocial hours have made it tricky to fit into other people's patterns. Also, in truth, I have often really needed to get away from him and see other people, think other thoughts.) But I think it's time to bring them into the picture and make his little flat into a party house. When we have made the effort to involve people and do something social he has enjoyed it so much, "Oh, I have enjoyed this. It's been lovely!" (for all the world sounding like our dad) so I want to make it happen more.
I want to make the most of our time together while Nick is still able to socialise, and this year the diary pages are going to look like something from the Great Gatsby. Photos, leaflets, phone numbers of pretty men and witty girls, coloured inks and felt pen doodles? Yep. There may even be stickers. I am determined that this is going to be a very good year.