Where the light gets in

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

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

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

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

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

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

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

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

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

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

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

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.