Strange Days

Two weeks since Nick died and it's been what you might call a Funny Old Time. Still in a state of mild shock. So many mixed up feelings, and crazy thoughts running at random through my head at all hours like a lunatic shopping list.
So much to take in, even after two weeks of acclimatising. SO much to do.
So many people and organisations to tell! As well as clearing the flat, because when a council tenant dies you get two rent free weeks and then start paying the full whack, which is fairly hefty without Nick's various benefits and exemptions. I couldn't bear or begin to do it all in just two weeks so will pay, but can't afford to for long and what would be the point when he's not there?

Meanwhile, the gigantic web of bureaucracy that had underpinned the last few years with Nick now needs to be dismantled and it all has to be done properly.
Don't worry, though! The government will do it all for you! we're told.
"Tell Us Once" is a brilliant way to save the poor bereaved next of kin from having to plough individually through the vast amount of paperwork and phone calls to inform absolutely everyone: benefits agencies, council, DVLA, the whole shebang. Brilliant.
Unless of course, the person you cared for died in unusual circumstances requiring a coroner's report, meaning that - like us - you won't get a death certificate for almost two weeks, and Tell Us Once is only available on issue of a death certificate.

So I have notified most of the key organisations one by one myself, while also telling the District Nurses and the Neuro team and the care agency and the Citywide alarm service, the Huntington's Disease Association, the butcher the baker the candlestick maker, cancelling the direct debits and also looking for Nick's will and making an appointment with his solicitor in the north east to begin the whole sorry business of winding up his affairs.

Putting all the unused medications in a paper bag to take back to the pharmacy at some point, and the care agency logs for them to collect.
Sorting through his clothes and toiletries and kitchen things and books and photos. A life. A life we had together for so many years as brother and sister, the letters and postcards I'd sent him over the years, the family albums, little bits and pieces from our childhood like his teddy bear and his Tonka truck and the funny clay figure he'd made at school.
I did, in the back of my mind, expect to have to do this one day, but not yet. It's so dreadful to do now that it's almost pleasurable because it brings back so many memories that had been pushed away in the focus of Nick's illness. That has been in the forefront for so long that it's good to remember him now as the person he used to be, the old suave ladykiller Nick, the handsome brother who could always make me laugh, who loved a sharp suit with the repartee to match, and had a watch for every day of the week and two at weekends.

The cards and condolences keep coming in, so many that it's quite overwhelming. So many referencing Nick's cheerfulness and courage and what a gentleman he had been through his illness.
I feel so grateful that Nick had the life he did and felt as loved and connected as he did (even though I agonised that it was never enough) and that his life has so touched the people around him.
That twice, a quirk of luck brought him to live just a few minutes' walking distance from us, and that he left us in the way he did - so quickly, with no pain, and that I'd seen him and hugged him just a few hours earlier.

I feel upbeat, then suddenly poleaxed with a weariness so deep it feels as if no amount of sleep will cure it, even if I could sleep properly which I can't. Waking up at 3am with my head whirring, so many thoughts and memories rushing at me in the dark like meteor showers.
Ridiculous random thoughts like, I must tell people at the Grey Horse where Nick used to go every Thursday night back in Consett. And, remember when we went with Dad on the ferry to France to scatter mum's ashes over the sea and they all blew back in our faces? And, I wonder what happened to that little gold star he used to wear on a chain? And underlying that, just a jumbled sense of relief mixed up with loss that's hard to fathom. Heart aching, bewildered, my compass needle gone.

We still have the funeral to get over with, but bank holiday and waiting for a corners' report (heart failure on two counts) have made it slow going and perhaps just as well. The paramedics at the pub said at the time, take it as slowly as you need to, people always think they have to rush but honestly if it takes you three weeks to arrange then that's fine. Wise words.
They are experts in shock, I suppose and understand things that most of us never see until we're right up close in the middle of it.

Becoming a carer happened almost overnight and it stopped just as suddenly. Being a sister was for most of my life. Now what?
It's much too early to think about the future, even though with a funeral to plan and my Carers' Allowance stopping in 6 weeks' time, there is no possibility of not doing.

Nick.

Nick died at the weekend. Sudden, and totally unexpected.

He had gone out for lunch with Sophie, a lovely carer / friend who takes him out on a Saturday, and I’d seen him that morning and taken him his paper and had our usual Saturday cup of coffee together before she arrived. He was wearing a favourite yellow shirt that I’d ironed and recently repaired after he’d popped all the front buttons off.

A normal Saturday. I was going to go for my afternoon swim and come back later to bring him some extra bit of shopping – already forgotten what – and had planned to spend the evening with him, watching TV and cooking dinner.

I had been upset to see him that morning, his movements more violent than ever, legs kicking and body contorting wildly like someone being eaten alive by ants.

 “Can you not get comfortable, bro?”

He’d already burst the pressure cushion brought by the District Nurses. But he said no, he was fine, and looking forward to his lunch out with Sophie.

He didn’t look fine. His chorea was merciless. I’ve got to get him a meds review, I thought. Something has to be done to ease this.

Be careful what you wish for, they say…

I was just leaving the house with my swimming things when my mobile rang. The phone had been set to silent and I saw that I’d had some missed calls.

He’d been at the pub. He’d been reaching for his glass of wine. He just…went.

Paramedics came but it was already over. I got the call that everybody dreads, and Simon and I drove up there, shaking. Tell me it can’t be true.

He looked so comfortable though. It was the first time in years that I’d seen him perfectly still.

Be careful what you wish for. But actually, in between the shock and the disbelief and the – actually that’s mostly it right now, the shock and disbelief - I am glad. If there was anything I could have wished for him, it was to go like this. And typical Nick - in the pub. 

This is Huntington’s.

 

How is it possible for a person who can’t walk more than a few steps or wash and dress himself, to generate so much chaos? 

I ask myself this for the 500^th time.  

I used to call it the Nick factor, the way that if anything could possibly go wrong with almost anything you care to name, it would do. 

Now I wonder if it is just the way things are for anyone with an impairment and their carers, and if, for all the various avenues of support from government and social services and healthcare, life is just not set up for us.
And with complex conditions like Huntington's, there are so many factors - not just the physical symptoms which we all know are horrible and many, but the mental and cognitive and social and financial and all the other knock-ons that simply don't fit so easily into a simple category of "illness".  

And also, with HD there is so little that’s predictable. And it all happens at once. 

And I am on the alert almost every minute of every day and yet never quite prepared.

As is often the way, I came back from a lovely weekend away to a whole deluge of new crises. 

I don't usually wash or dress Nick as it needs two people, but was helping him put on his pyjamas and saw a nasty looking pressure sore on his bottom that the carers have either missed or ignored. 
There’s no record of any concerns in their daily log, and there’s not even the standard issue body map diagram showing which areas to be aware of.

Why the hell has no-one noticed this? It looks like a stage 2 to me, where the skin is broken. This is serious.

His special Omega chair with the inbuilt pressurised seat has been knackered for months so that can’t have helped. Today it gave up the ghost. It just kind of collapsed from under him, he said, and the castor came off, leaving it capsized on the floor like a poor old dinosaur. 
Thank goodness he wasn't hurt. It's the only thing he can easily sit on for long though, and the spare armchair is creaking dangerously with every shudder and kick, only made worse by the fact that he is so uncomfortable there. 

We need to get hold of the physio so she can authorise the manufacturers to come out to do a repair as soon as possible; but when I ring, she's on holiday for the next two weeks. 

And there's a worrying message on Nick's phone from his bank about low funds, and looking at his online banking it transpires that there have been three lots of £98 debited from his account by the council. Whaaaa?!!!? Thanks to his housing benefit and various exemptions, it's supposed to be under a tenner.

I get on the phone and manage to talk to someone who is as confused as me but thinks it might be something to do with a default setting by their computers when Nick’s housing benefit was recently re-assessed. (i.e we got four identical letters saying that as Nick’s circumstances had changed and he had not informed them, they were suspending his housing benefit. I know the ropes by now and apart from a knee-jerk email that I knew no-one would ever reply to, just sucked it up and made the journey to the council offices with a big sheaf of evidence to show that Nick’s circumstances had not changed and here was the proof. A week later it was reinstated and I gave a little cheer.

“But by the way” I had asked the advisors, “this won’t affect his rent will it?”

No, I was told, because he is in credit with his rent payments and the Direct Debit is ticking along as usual. Phew. All good then. 

But apparently not, as some kind of computer / human blip has alerted a default payment and Nick’s weekly direct debit has rocketed up to nearly a hundred quid, with no notification whatsoever.  And no, they can’t refund it at their end. They will send me a form to fill in which will take up to four weeks to process – never mind that he is quite spectacularly in the red right now and all his bill payments are about to bounce.

How can this be happening? I call the social worker for advice. She sends me a link for a crisis payment, because I can’t keep funding Nick for everything, I’m struggling these days to pay my own bills (Carers’ Allowance = 3p an hour according to one of my online friends) and surely the council need to take some responsibility here. An unannounced rent rise of 10 times the agreed rate? 
A bit of researching reveals that the housing benefit department and the rent department are not even both part of the local authority. One of them is a privately contracted company and communications are generated by numerical calculations rather than people and words. 
Holy Moly. It’s not quite Gilead, but we’re definitely in Terry Gilliam Brazil territory. 

Oh, and even though he was supposed to have enough to last the week, Nick has run out of wine, and his left hearing aid isn't working.

There's more, but these are the things I need to deal with most urgently and after two fairly full-on days, they're all sorted. The District Nurse has been to dress and check the sore and supply a blow-up pressure cushion which eases the discomfort of the creaky armchair and the Red Cross emergency repairs team have come to the rescue and reassembled the broken Omega. 
And after four more phone calls I found a mole at the council who told me to call Nick's bank and request an immediate refund under the Direct Debit indemnity clause. And indeed, as the debit agreement was for a stated weekly amount and this wasn't it and there had been no authority to change it, they didn't bat an eyelid and put the money back into his account straight away. 
I've checked the hearing aid and he had somehow, heroically, put in a new battery himself but not had the dexterity to remove the little orange sticker on the back so it wasn't activated. Simple thing to fix.

And I have done an online shop and got more wine. 

So, phew. 

Nick is happy again and much more comfortable; he's got his radio and his chair back and a dressing pad on his bottom. He's over the moon. The nurse will come in again tomorrow and he has money in his account again and he doesn't seem to be struggling to eat quite as badly as he was last week, and just for the rest of today I feel I can breathe a bit easier.

But this is Huntington's. It's not only the awful jerking and spasming and losing the ability to swallow. It's not only the memory loss and the mood changes and the accidents and the super-strength. The addictions and the obsessions and the reckless spending and the dental problems and the over-heating. There are so many threads that all seem to wind and unravel together that it takes your breath away. If you're not careful it can take over your own life, too. 

I sometimes feel a bit guilty for taking time off and just getting out of town, immersing myself in other things – sea air and green spaces and old friends (most of whom have had their own life upsets), and conversations about music and art and love. There I am on the move again when other carers are stuck 24/7 with no respite and Nick can’t leave his flat or lift a spoon to his lips. But these little breaks are like vitamin shots for the soul, powering me up for the return to another onslaught of what the HELL just happened and oh God I didn’t see that coming. This is Huntington's - relentless, unforseen and unpredictable. 

Unbreakable

To tell you the truth, I feel pretty damn broken today. I feel pretty damn broken quite a lot of the time, every time a new crisis sends a rabbit punch to the head from an unexpected direction.

There are periods of relative serenity and then suddenly a week or a month when something happens EVERY DAY.

What do we do about it? Keep going. Find ways to keep going.

I like this t shirt because on a bad day it reminds me of the strength of the human spirit and all the people who keep on fighting to get the best for our loved ones and one day, find a cure for Huntington's. There are so many of us out there, just doing our best under tough circumstances.
Be strong, dear readers, whatever you're facing today, and have a slightly flabsome arm flex from me.