Baring my soul in public

I’m a very private person yet happily write all sorts of personal things here in my blog. When I was asked to write a diary about caring for my brother, it didn’t seem to be any different and actually I was really delighted to think of reaching many, (many!) more people. Nevertheless, now this piece has been published in the online “slow news” journal Tortoise with 7,000 + subscribers*, I feel quite strange about it all.

Nick and I both wanted to do it because we both think the world needs to be more inclusive and more forgiving. Huntington’s is a bastard, no two ways about it, but we want it to be a condition people know about and can recognise, not something hidden and shameful.

So many families live under that shadow; I can understand why you might not want people to know that you have an incurable hereditary illness in the family but in the end, if it’s in your gene pool it will get you and the silence helps no-one.

And carers – we’re so invisible to so much of the world that even a popular "Discounts for Carers"  scheme only recognises paid care workers, not unpaid carers. How nuts is that?

So I wrote this piece for all carers and for anyone living with a life limiting condition that takes them out of plain sight of the world.

It’s really not intended to be grim reading – there’s frustration and anger and heartbreak there, but humour too I hope, powered by the belief in a better society that looks after its weak and helpless, and strength in solidarity, and always, always love. 

*It's a fantastic platform for informed long and short reads - the news behind the news. Proud to be associated with such intelligent and interesting journalism. 

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.

It’s giving me the pip

That’s rather an old fashioned expression now isn’t it? It means, to irritate exasperate or annoy.* 

*Look at this wonderful link, which, if it’s new to you, will explain all.

Oh, those people at the DWP knew what they were doing. I bet there were public school boys involved who’d read their PG Wodehouse and were having a little private snigger at the connotations, the nuances of which us plebs wouldn’t ever understand.

Well, I have thoroughly got the pip.

There’s another big stack of its paperwork lying on my desk and it seems so unfair.

We had finally got the letter about transferring Nick’s DLA to PiP and I duly filled in the Work Capability Assessment form, being very clear about the extent of his impairment. Also, names and contact details of all the various professionals involved in his care, and 30 pages of supporting evidence including his CHC assessment done at New Year. My printer had broken so I went to the library to make the copies, and write Nick’s National Insurance number on each side of every page. Just doing that bit and checking it all took over half an hour. Then I went to the Post Office and posted it off.

Job done, I thought.

On Thursday (admittedly a quick turn around) I got a new application form for PiP, this time addressed to me. I couldn’t understand why. It was obviously a different form and generated from the previous one, but why? What part of “diagnosed with Huntington’s Disease in 2010, progressive condition, cannot dress, wash or feed himself, acute dysphasia and cognitive impairment” had not been not quite clear?

The questions were almost identical to the previous form, asking the same things about what can you / can’t you do for yourself.  I felt very anxious about this and why they were asking the same things again, as if to try to catch us out – as if Nick were just pretending to have Huntington’s Disease, you know, just for a laugh and to con a few quid out of the public purse.

The first time Nick applied for DLA, ten years ago when his symptoms were too visible to ignore, when he had been sacked from his job because he kept dropping things and he had been told he was no longer fit to drive, he was turned down.

His Huntington’s advisor in the north east appealed and this time won by a couple of points.

Not because he had been diagnosed with a life limiting progressive illness and was suffering from panic attacks, acute disorientation and stress incontinence, but because he was deaf in one ear and had to wear a hearing aid. Give me strength! He got his DLA, though. And a Blue Badge. 

Back at my desk, May 2019, I kept circling this new lot of paperwork. Eventually the penny dropped that this is Part 2 of the application, the Daily Activities Assessment to establish the extent of Nick’s support needs. It never occurred to me to look this up online, I had just thought that you made the application and then someone would get back to us with a yay or nay. Goodness, how naïve.

The damn thing is sitting on my desk and I will just have to woman up and fill it in. 

Safina, the advice worker at our local Carers’ Centre, gave me a crib sheet of the points system (“Cannot stand and walk unaided more than 20 metres – 12 points”) and it is immediately apparent that Nick will score highly on all counts.

What grieves me though, apart from the exasperation and annoyance of having to spend another chunk of my time going through all this again and gathering the bloody supporting information all over again (yes, they want that too) is that it’s always time I could be spending with Nick, being with him rather than closeted up somewhere I can concentrate doing this for him. He’s oblivious of course, I’ve told him that his benefits are changing and I’m having to apply for the new version of DLA but he doesn’t really retain the information or understand. 

Just have to suck it up and fill the form.  One of my most hated tasks. I’m a right- brain intuitive with "unusual" handwriting. Some people have the neat and orderly form-filling gene, but me, no. It’s a painful chore. And that’s me with two degrees! How must it be for someone not confident with their literacy, struggling with an impairment, trying to do it for themselves?

And then underlying all that is the actual content of the questions. Every single part of it only highlights exactly what Nick cannot do and will never do again. Leave the house unaided. Walk 50 yards. Prepare a simple meal. Make a budgeting decision. I know all these things because I see them every day but seeing it in such quantitative cold hard print makes it very real and only adds to the cruelty of this horrible illness. But there we are. All I can hope for is that he gets the award without too many further hoops to jump, and that someone who reads it breaks out of their Bot mould for a few minutes and learns a little bit about what it really means to be living with Huntington’s.