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.

Sharp Dressed Man

 “Right! We’re off to town!”

I can’t stand the sight of Nick’s manky sweaters any longer. Everything is ripped and stained, with holes in odd places. And as for his socks…

The beautiful soft cashmere mix jumper he got for Christmas is unrecognisable after many dinners spilled down the front, elbows worn thin with scuffing, its rich chestnut colour strangely tie-dyed after the carers had thrown it into the washing machine with his blue socks, towels and sheets.

“Classic”, I think, “the one time they actually did the washing” because when the laundry basket is getting full they are supposed to stick a load in the machine in the morning, then take it out at lunchtime. But they don’t.

I have darned the elbows of some of the jumpers – one that belonged to our dad, for instance, that we both felt sentimental about – and sewn up the seams that were coming apart, because Huntington’s turns even the mildest mannered man into the Incredible Hulk, arms bursting out of sleeves with the flick of a muscle.

So Nick needs new clothes. I wouldn’t presume to go and buy them for him on my own. He still has some say in what he wants to look like, though this is sometimes random – he can be very clear that he wants to wear his leather jacket, but with old baggy chinos and a grey prison-issue style sweatshirt underneath. And red and white striped fluffy Christmas socks. And his alarm pendant round his neck.

I thought I would take him to M&S. I used to go shopping there with one of my Alzheimer’s clients and they were unfailingly courteous and kind to her, but Nick has other ideas.

“I want to go to Boyes” – which was his default shop back in the northeast for practically everything that isn’t food. It’s one of those slightly old fashioned stores that seem to stock anything from shampoo to bras, from licorice comfits to weedkiller, fishing tackle to crayons and cool stationery, all under the one roof. We used to take the kids there for colouring books and sweets when they were little and we all loved it. And I always made a beeline to Boyes when I visited Nick, for their amazing supply of coloured lacy tights.  I’m not sure about the men’s clothes though.

I don’t even think there is one in Sheffield (oh, just did a search and what do you know, there is! Way on the other side of town though)

Anywhere else you’d like to try, Nick?

“Peacock’s” he says.

There was a branch of Peacock’s in Consett that was just stumbling distance from his house there and increasingly as far as he could walk. I know there’s one in town, on a pedestrian precinct with easy wheelchair access, so we’ll go there. Great. Though suddenly the film Rain Man pops into my mind with the Dustin Hoffman character insisting that he gets his pants from K-Mart.

Nick used to wear handmade suits with peacock lining and had a silk tie and matching socks for every day of the week and two for Sunday. Handkerchiefs too, peeping out of his breast pocket, sometimes in a contrasting colour. He liked cuff links and those elasticy things that hold up your shirt sleeves. Off duty, he still looked sharp and always had smart shoes that he kept in shape with a shoe tree. (I’ve never had a shoe tree in my life) 

He always wore aftershave balm and cologne and smelled good.

He still wears cologne but it’s what the carers help him spray on after his strip wash in the morning, and he can’t do up a button any more, let alone a cufflink.

I still iron his shirts though, and press his trousers. Increasingly, I think he just chooses the first thing on the pile when the carers ask him in the morning what he wants to wear (he says they do and I hope this is true) so I try to make sure that at least it is reputable. The carers don’t seem to notice his holey socks though, but maybe because they seem to wear out almost on contact – that Hulk thing again.

Anyway, we’re going shopping.

How do you have a Social Life?

It amazes me that I still get invited to things or have any friends left but miraculously it seems I do – even if quite a few of them are at a similar stage of life where they are looking after someone, worrying about an aged parent or coping with a troubled teenager, sometimes both of those at once.

When you have that going on in your life, you really need some kick-back time away from your caring duties. Leave the house, go out, see other people, talk about completely different things.

It’s very easy as a carer to feel you’ve lost your identity and to forget who you are, because so much of your head-space is taken up by the person you’re looking after. Especially when they have an illness like Huntington's that affects body, mind and every possible function. 

It's hard to sustain this level of care and dedication without recharging your batteries; you absolutely have to find time to come back to yourself, but it’s also important to be social and meet people as the person you always were, not just as a carer. You need to be able to break your routine and get some physical distance from your cares. Go for a walk, see a movie, have a dance, drink a few drinks, think about something else, laugh without feeling guilty, just lose a few degrees of your endless feeling of responsibility. 

It helps so much to have friends, “people who like you even though they know you “. 
The nourishment  from an afternoon out with a friend or meeting up with a few of the right people can sustain me for days, weeks afterwards. 

The trouble is, though I long to see friends and got to parties and have all those different conversations and so I make plans and put it all in my diary, so often when the time actually comes, something happens with Nick and I have to cancel. That has happened a few times, especially at the weekend when he might have a few more wines than normal and falls over or hits his head. Times when I am all dressed up and ready to go, except that I daren't leave him. 

Or – more difficult to be upfront about as not everyone gets it – I am just too tired.

It’s invariably the worst timing, just when there’s a fabulous party that I’ve been looking forward to for ages – but what d’you know, it’s at the end of a long day or a run of long days with meetings and health appointments and washing and shopping and cooking and cleaning and wiping up the spillage and all my energy feels as if it’s been sucked out with a vacuum cleaner. It seems so weedy but I can’t be the only one who feels like this?

And I feel teenagey, not sure that I want to go anywhere unfamiliar or talk to anyone new or have to account for myself as me. I miss the buzzy high from new conversations and emerging friendships but I’m exhausted and dull and have nothing to offer. If I ever had any sparkle it’s all come off in the wash long since. Since taking on this role it feels as if I’ve lost all my social confidence. And even with the friends I don't have to try too hard with, there are times when it is just all too difficult. 

I don’t want to stop making plans or trying to see people, it is so important, but it is impossible to guarantee whether come the day I’ll be able to leave the house. It's maddening but it seems to be all part of the new way of life where I'm as responsible for another adult person as I am for myself. 

I want to know what other carers do and how they cope. 

So – carers - tell me. How do you have a Social Life? 

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.

Unleashing the genie

Sometimes I wonder why I'm writing this, and who for. If you are affected by HD yourself then this is surely all stuff you already know. And if not, what sort of ghoul are you for reading someone else's misery memoir?! No, no, I don't really mean that, honest, please do keep reading.   

But what good does it actually do to talk about HD? 

For one thing, it will I hope make people more sympathetic - and more accepting. Because although this still classifies as a "rare disease", you just never know. That malodorous man lurching towards you at the bus stop or in the supermarket queue might be slurring his words because he has HD. He might smell of booze and wee and something worse; he might look as if he's slept in his clothes and it’s easy to assume he’s an addict or a street drinker, wrinkle your nose and move well away. But his trouser buttons could be done up wrong because he has HD and can’t fasten them himself and forgets to do it anyway.

The woman making a scene in the cafe who knocks a plate of food onto the floor then scrapes back her chair with excruciating screech, her voice rising into hysteria – for all we know she might be agitated because of HD. Again, there are all sorts of things we can assume about her and the British reaction is usually to avoid eye contact and get well out of the way. 

HD is ugly, embarrassing, distasteful and frightening to watch as it gradually takes over the mind and body. 

It makes you behave in odd, sometimes unsocial ways. You will be sweaty, jittery, whack out with your arms and legs and sometimes hurt someone. You may have car accidents and go into furious rages with other drivers. You lose inhibition and often a sense of personal hygiene. You miss your mouth with the fork and send the sausage flying across the room when you try to cut it with a knife. You will lose the thread of what others are saying, won’t really care anyway, obsessing over the same issue again and again until people get fed up and even start to avoid you. Or you might suddenly become catatonic, staring at the TV for hours on end, drinking. It messes with your meds but it’s one thing you can still do and by golly it helps blur the edges a bit.

By the time HD typically develops in mid life, people have often established a career, have family, home, financial and social responsibilities so it affects not just the sufferer but a whole network. 

In some ways it’s similar to dementia, hideous and unknowable, except that we seem these days to have a lot more understanding of dementia.  
And of course with HD there is the hereditary factor. 

You've probably come across the notion of Magical Thinking. The idea that if you pretend something doesn’t exist it will go away. Well, this is one of the things that has kept HD hidden for generations.

One of my oldest friends from school married a man who went on to develop HD. His mum had it, and one of his cousins. So he must have known what it was and that they were all at risk, and yet it was simply never mentioned until much much later when he started getting ill. By then they had three children, who are now all young adults and very much at risk themselves. He died a few years ago while they were all still teenagers. 
My friend nursed him, mourned him, coped amazingly well. Yet even now, having been through that, having known each other all our adult lives and shared the same ghastly coincidence of being affected by something so horrible but so uncommon, she is very reluctant to talk about it with me.  

I’ve spoken to other people who know they are at risk but whose families refuse to discuss it, as if just bringing it out into the open will unleash the evil genie. 

It's all very well for me, you might say: I know I'm in the clear and don't have to tiptoe around the subject, always waiting for the axe to fall but shoving those thoughts to the back of my mind, not talking about it in case it tempts fate. 

But those of us in the clear are still affected to the core. We still know more about the illness than anyone really ought to or wants to, and who else can bring it to attention if not us? 
Do we really want to continue the generations of silence, stigma and shame for our loved ones? 
I think the only way to banish that genie is to show it some daylight.  

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.