Monday

The Bravest Thing I've Ever Done.


I am a huge physical coward. I climb carefully into the swimming pool down the ladder and shudder at the idea of diving in. The very thought of bungee jumping makes my stomach turn. I don’t cycle on the road any more because I’m scared of traffic. But I did do a very brave thing, one of the bravest things that anyone can do, when I took the test to see if I would develop Huntington’s Disease.
This is in the news today and it is ten times braver to do it in public with a camera crew. A few years ago my friend Jaqui did the same on the radio.
Their courage is just astonishing. 
It seemed a good time to share my story too, as I’m writing a memoir about my mum, Nick, and how Huntington’s came into our lives. It’s still work in progress but this is an excerpt about my decision to take the genetic test. I'm eternally grateful for the huge support that was around me at the time, and that for once in my life I did something really brave.


“Nick and I were having a beer, talking about Mum. The misery of her last few years, how the illness had stolen her life.
         If I thought this would ever happen to me, I’d kill myself. Seriously, I would rather top myself than end up like that.’ 
He had said this before, whenever our conversation danced around the one subject that we could never quite properly talk about. But it won’t be you who ends up like Mum, I privately thought, it’s going to be me.

None of us know what life is going to throw at us,’ goes the saying, but actually with a Huntington’s diagnosis you do know. And it’s never good.
When you have a 50% chance of inheriting an incurable illness, the proverbial axe is always poised over your head. Or maybe the Monty Python giant foot. I don’t know if anyone not directly affected by something like this can really understand the feeling. But I will try to explain.

You are born with this built-in time bomb ticking away inside your body. And so are we all, you may say, but unlike any other illness I can think of there’s a world of difference between ‘likelihood’ and ‘definite’.
It’s not a predisposition that might be averted with careful lifestyle choices and good luck. No surgery can remove the affected part.
If you have the HD gene you will develop the illness, the one you have already seen destroying your parent or siblings, and it’s this inescapable repetition that is so nightmarish.
         So, unless you are 100% sure that you will not inherit the HD gene, if it is in your family then you are always wondering – Will it be me? And if you have siblings, inevitably – what about them?
Well, how can you think about that for long without driving yourself mad?

If you’re brave enough, you can take a predictive test that will analyse your DNA from a blood sample. The test became available in the UK in 1993 and will reveal whether or not you have inherited the genetic mutation in chromosome 4 that causes Huntington’s Disease.
The blood analysis will measure the repeat sequence of Cynosine, Adenine and Guanine, three chemicals that form the building blocks for a person’s DNA. In a “normal” person, these chemicals display a certain number of CAG repeats, usually up to 35 times.
Someone carrying the defective gene will have a much higher number of CAG repeats – typically between 37 and 45, which is the inevitable marker for the illness.
Could a high number be a mistake, miscounted or misinterpreted by an inexperienced lab technician? No.
So that’s what the blood test will show – your number of CAG repeats. Significantly higher than 35 and the HD gene is stamped through your DNA like writing in a stick of seaside rock.

If so, however young and healthy you are now, there is no escaping the disease. As typically it doesn’t begin to manifest until mid-life, it can be hard to believe that you are carrying this invisible time bomb. You can disown your family, emigrate to Australia, call yourself a different name or have a sex change. But if it has marked your card, it will come for you. No escape.

The testing process is lengthy because this is clearly not a decision to be taken lightly and there are staging posts along the way where you can discuss your fears and back out at any point before actually taking the blood test. But do you really want to know? It’s such a gigantic decision that many people don’t.
As a counsellor had said to Nick and me after Mum died, ‘You are young – get on with your lives. Don’t let this dominate you, who knows what could happen, you could live in fear of Huntington’s and then get run over by a bus!
Not the most cheering way of putting it, perhaps, but it did the trick for us. For a while, anyway.
Because it is hard not to live with some level of fear. You do get on with life, other things take centre stage and Huntington’s gets gradually shunted to the dark corners that you don’t investigate too often.
Living with that knowledge in the back of your mind is like living under a shadow; it soon becomes normal, disregardable, your eyes adjust so you forget it is there. But nevertheless….

And as you get older and approach the age when it might begin, an undercurrent of superstition starts to envelop everything you do. When you know it might be you next, your whole being conspires to avoid properly thinking about it, even though it’s all you do think about.
Generations of families can be affected in this way, knowing exactly what’s going on but not talking about it. Watching. Dealing with the fall-out of early symptoms, which can range from a slight tic to hyper-mania, car accidents, obsession, crazy spending and sudden violent rages – but somehow not acknowledging it as the onset of HD.
Even when you are actively looking out for the symptoms. You know they’re there and in hindsight it’s so obvious, but it’s as if your brain simply cannot acknowledge the significance. It’s a weird paradox.
Whole families become experts in denial because the reality is just too overwhelming to face.

So you can read up about the illness and genetic science. You can campaign, you can talk about HD and do fundraising ‘til the cows come home but when you or a loved one are at risk yourselves, there’s always a tender nerve inside that you avoid going too near.
         Is this it? This twitchy eye, that dropped plate – is this the onset of Huntington’s? You worry about that all the time and yet when the evidence is actually there you can’t seem to see it. It’s the permanent elephant in your living room that you just can’t look at directly, however many times you have to walk around it.
I was like that for years, and then one day I just got tired and booked myself in for the test."




Sunday

Happy Birthday


'January 11th. It’s Nick’s birthday and we’re driving north and going out to lunch with his ex wife and his kids, at a place he used to like when he lived in County Durham.
I’ll order a white wine spritzer in a long glass and we’ll raise a toast in his honour. He just won’t be here in person.
A year ago today I took him out to an Italian cafĂ© where he insisted on ordering spaghetti. I watched him struggling from across the table, trying so hard to not rush to his rescue but let him have a chance at independence, until he asked, ‘Will you help me?’
I was used to doing this discreetly, leaning over to cut up or mash the food on his plate to make it easier for him to eat by himself, where possible prompting him to order things that he could eat by himself without too much fuss. Unfortunately, he really liked spaghetti and noodles and he was a stubborn so- and-so, always had been.'

I love the drive up the A1, watching the skies gradually widen away from the cities, Nick with me on the passenger seat as a plastic tub of ashes in a Christmas bag but also in spirit. The times I’d driven to see him when he lived up there, the times he’d been beside me on those country roads ending out of Durham and through one of the landscapes I love most in life. He was there in the road and the trees and the music on the CD player (David Bowie, of course, who died on Nick’s birthday) and the huge rainbow suddenly stretching right across the sky as we came towards Consett. At the pub, waiting for the others to arrive, I sipped at the spritzer, Nick still beside me, and raised a silent toast. The wine came in a stemmed glass; Nick would have knocked that over in seconds flat, but that was then and this is now, a small concession to our changed circumstances. The music in the pub was astonishing, though, all his favourite songs, almost as if they had known. He'd have just loved it. 

Later, sitting around the table with Nikki and the children, we talked about the great party he'd had for his birthday last year, how many people had come, all the cards and presents and food and what fun it had been. The expression on Nick's face when he saw George and Elene walk through the door, surprise guests of honour. I knew things were changing and that the effects of the illness were getting worse, but none of us could have guessed that he wouldn't be here now to celebrate another year. Well - not here in person. 
We have not yet decided what to do with his ashes so his children are taking them home for a while to think. Maybe under a tree in some beautiful woodland glade, maybe scattered to the four winds by the sea (I've kept some back to do this in the peak district) but what matters is, we are keeping his spirit close. It's always there, he's always with us, it's just different. 


Thursday

Happy Sad Memories


We spent Christmas at my in-laws, who are some of my favourite people in the world. Being with them is like a home from home. So why did I wake up on Christmas morning with a stone in my chest and the most indescribable sense of loss? Needing to fetch the heavy plastic tub from its box under the tree and sit cuddling it, bereft. It’s all that’s left of Nick in physical form. I know he’s gone. I know it’s ridiculous. It was probably pretty ridiculous to take him with us in the first place to spend Christmas together, but he loved Christmas and I wasn’t going to leave him on his own. This was the first one without him in the world since I was four, and grief makes you irrational. 




I’m also aware that he was so lucky to go when he did, and how hard things might have been by now, how difficult he was finding it to do so many things, and starting to dread the prospect of eating when all his life he’d been such a foodie. 
It made me think of all previous Christmases we’d had and their changing choreography as his illness began to manifest. This one I remember in particular because Nick was still living in his house in the north east and relatively independent – or so I had thought. 
Just four years ago. I wrote about it in my diary and it’s part of the memoir I’m writing about Nick and Huntington’s and how it affected our family. It was one of those near disasters where you end up having such a good time that it becomes one of the best times. It still makes me smile.

Christmas 2015
It was Nick’s turn to have the children with him for the few days after Christmas. We arranged to have a second Christmas with him and the kids, travelling straight up north after being at Simon’s mum’s. Nick said he would cook a turkey and to leave it to him. I must have been a wee bit doubtful but he’s been coping so well lately. Trouble is, while always watching out for change, I don’t seem to see it until it’s too hard to ignore.
         We drove up north on the day after Boxing Day. There had been dreadful floods throughout Yorkshire and the north west and as we crawled slowly up the A1 we saw half submerged trees in what had been fields and were now lakes. By the time we arrived we were hungry. Simon’s mum can never let us go without at least one bag full of cake, fruit, cheeses she has got in specially, whatever they won’t be eating now the guests are leaving, so we were laden with goodies: mince pies, home-made cranberry sauce, left over roasties and some little cocktail sausages. And a stick of sprouts, some carrots and a bottle of fizz. Nick had said he would provide everything else so we just needed to bring ourselves and whatever we were drinking. Finally we knocked at the door. There was great excitement to see each other and the children immediately tore into their presents while we opened the wine. Something was missing though – what? Oh, yes - where was that background hum of the delicious scent of roasting meat? (This was just before I turned vegan...)
         Shall I help you get the dinner on?’ I asked Nick.
         OK Sis.’
We went into the kitchen.
         Where’s your turkey, Nick?
He fumbled in the fridge for what seemed a very long time and then produced a small cardboard package. Inside was a frozen turkey roll, clearly labeled as ‘Serves 2 people.’ There were six of us.
Simon came in, ravenous after the drive and wanting to get dinner started.         Shall we put the bird in the oven then Nick?’  He didn’t notice my frantic eyebrow wiggling and grimacing.
Nick looked a bit shifty. He started twiddling knobs on the cooker while I rummaged in the cupboards to put the roll – looking smaller all the time – on a roasting tray. Nick fiddled about some more with the dials. Then –
          It’s not working at the moment.’
          ‘Oh-kayyyy…what about the microwave?’ Another long silence.
          ‘That’s broken.’
I’m honestly not making this up. In his mind he was going to cook a turkey banquet for six people, even though what he actually had was a tiny frozen ready meal thing and no oven or microwave. There was no point in getting exasperated, we were way beyond that. We would have to improvise.
I cut the turkey roll into shreds with a pair of scissors and we put it in a pan to fry with some onions and then added the sausages. We made bubble and squeak in another pan with the leftover roasties, chopped the carrots raw into sticks, and the kids persuaded us to forget about the sprouts altogether. Meanwhile, the adults opened another bottle. There was lots of food to go round and it was all delicious. And in the end, much more fun. We had to work together and pull what could have been a disaster into a good time – the stuff that often makes a family gathering memorable, especially at Christmas. And Nick was the host with the most. But I think we need to look at some home help for him in the New Year before someone gets poisoned.’ 



Tuesday

Last Christmas, I gave you my heart


...and I won't ever get it back, but that's OK. We were brother and sister for five decades, nothing can change that, and your memory will always be with me.

Memory is a funny thing, though – yesterday I was inconsolable because I’d just idly wondered what we were doing this time last year, then realised that I’d got rid of my 2018 appointment diary and also yours. The reminder of all those medical and social service appointments; ears, eyes, skin, teeth, hands and feet and bumpsadaisy, there wasn’t a bit of you that didn’t have a problem and someone trying their best to fix it; the waiting in for wheelchair repair and every other repair under the sun; meetings with management of the awful care agency, always promising but never delivering; the council officer and police calls about the upstairs neighbour; the shopping and the schlepping and the fun things too, your lunches with Helen and Sophie and me and the cinema and your boys’ night out with Simon at the pub. 
I couldn’t bear the reminders of all the bad stuff; we’d already lived it for too long. But I’m sad to forget some of those little things, though maybe they never really leave but are always there in the close weave of our souls.

We went to two carol concerts, that I remember, about this time last year. Both of which we had to jump ship halfway through because you were so uncomfortable. Being in a confined, unfamiliar space was very hard for you to manage, even in the wheelchair that you said was your most comfortable place anywhere. We’d both stopped caring if people stared as you jerked and rocked and shuffled about, but now the Christmas spirit had arrived and people were kind. You loved the craic, the decorations and festive air, and you certainly enjoyed the mulled wine and snacks.

All this stays with me in my bank of treasured memories. We never imagined that you wouldn’t be doing the same thing with us this year, and I’m still getting used to you not being here. I wouldn't want to put the clock back and see you getting worse and more uncomfortable all the time, maybe not even wanting to or able to go out much. We have a lifetime of memories and good times to look back on, and you definitely quit while you were ahead. It's just a funny time for the ones you left behind. 
But don't worry. It’s Ok – just strange. 





Thursday

Carers' Rights. Human Rights.


Carers’ Rights Day doesn’t stop being important for me now that I’m an ex carer. 

Here I am typing in my pyjamas at 8pm, knowing that there’s no reason to have to rush out again to Nick, or to feel guilty that I am just tootling around at home rather than spending time with him. Increasingly I couldn’t bear to think of him alone, not just in case he was lonely but because of the very real array of possible danger – from choking, falling, being given the wrong medication or reacting badly to the right one, to malicious damage by the nutter upstairs – all things that could and already had happened without me there to protect him.
Nick had become as helpless as a small child, relying entirely on help from me, Simon and the council carers just to be able to get out of bed and sit in his chair to watch TV.

I don’t have to worry about these things any more. The constant worrying about him and is he safe, the fretting about the carers who could never bloody turn up on time or be relied on to get the right meds dosage or lock the door behind them, let alone wipe down his table or give him the food I’d carefully cooked, pureed and left labelled in the fridge. The endless onslaught of bills and benefit reassessments and constant breakages, never knowing what was going to go wrong next. The laboured text at 11pm, “Sis, I have broken my television / bed / chair…”, the sudden call from the alarm service, the completely unexpected rush to A&E.

Life is still unpredictable but I don’t have to carry these worries like a giant constant weight round my shoulders any more.
Since Nick died, I’ve learned to relax into an expansiveness that I couldn’t even imagine a few months ago because it didn’t seem possible, at least the only way it would be possible would be this, if he was gone, and my brain couldn’t compute that.

Carers live two lives all day and every day, managing the needs of another person as well as their own. That means nurse, cook, dietician, chauffeur and travel agent, housekeeper, stockbroker, medical specialist, virtual assistant, advocate, benefits expert, launderer, scribe, punchbag, ongoing lifeline and all-purpose trouble-shooter when things go wrong. And it means developing a rhino thick hide that will not be dented by the sling and arrows of outrageous fortune as you battle intransigent bureaucracy and talk-to-the-hand jobsworths, because carers soon find out that another giant chunk of their time is taken up fighting for what you might think would be the basic rights of a vulnerable person who can’t speak up for themselves.

I don’t want to sound chippy because in theory we still have a welfare state that looks after the frail and disabled. But navigating your way through that takes some strength, and carers get used to having to talk to the hand again and again and again until the message gets through, for the sake of the person they’re looking after.
Becoming a carer for someone you love can happen so quickly that you hardly know what’s hit you, and it can happen to anyone. It’s the hardest thing I have ever done.

Then of course there is the navigation through all the bureaucratic knots and tangles when that person dies, especially if it was unexpected. I’m still wading through that but as an executor of the estate of the deceased, no longer “Carer”.

What am I, though? Being an ex carer is odd; I’m still getting used to it. The new freedom is a gorgeous thing but it’s unfamiliar too and I am sorry to say that there are very few resources for someone who suddenly stops being a carer.
No P45. No gold watch for faithful service. No rehabilitation. No bereavement network, no employment support, no steady ground under your feet. Carers’ Allowance mercifully continues for 8 weeks after someone dies but everything else stops dead too and that’s that.
Some people have known nothing else but their caring role; how are they supposed to find their way in a world that barely recognised them while they were actively being a carer, let alone now? When the financial constrictions of caring, which have STILL not been addressed by any politician I’ve come across from any party, leave most carers unable to save even if they can work alongside their role, while what savings they might have had are drained by the constant erosion of buying disability equipment and specialist goods and all the other seemingly small things that add up to a lot.
I’ve been bailing Nick out for the last ten years in dribs and drabs and it adds up to a lot. It was the price of love.

This has happened to me the year I turn 60 - too young to retire but with no foothold back into the ‘real’ world, I’m still blinking in the sunlight like a newly released prisoner who doesn’t know what to do.
Yes, I’m worried about the future and I need an income but if caring has taught me anything it’s to be resourceful.

And angry, if you want to know. Why are unpaid carers still not properly recognised for the work they do and the contribution they make to our economy, the billions they save the state? The current Carers’ Allowance is a mockery as it doesn’t align with the new Living Wage and no-one at HMRC seems to have done their sums about this, or give a toss. 
Why have we not heard a single politician standing up for carers as they present their election promises? Why is there no support for former carers who are presumably expected to fit neatly back into a world for maybe years has pretended they don’t exist?

On Carers’ Rights Day this year, I’m not a carer any more but I still think like one. And we deserve better. Please, don't think that because it doesn't affect you it doesn't matter. Sooner or later most of us will need care or be carers. Don't turn a blind eye now. 
You can join the We Care campaign (@WeAreCarers) with a click of a mouse, you can vote for a politician who cares about social care, and yes, you can share this message. 
Thank you.



Wednesday

Secrets and Lies

Imagine you're a doctor whose patient has a rare but deadly hereditary illness which will be passed on to their children. Until your diagnosis, the patient and his family had never even heard of the illness, but it's something so terrible that the patient makes you promise not to tell his pregnant daughter in case the news drives her to suicide.
When the daughter does find out she may inherit this illness, she tries to sue you and the health authority, saying that she would have had an abortion if she'd known.
Sounds like a slightly far fetched plot from one of those TV hospital dramas, doesn't it. Unfortunately not.
This sad story has been in the news this week. Believe me, the circumstances might seem extreme but the basic story line is just a variation on a well-known theme for families affected by Huntington's.
If you have any kind of close knowledge of HD you will probably nod in sympathy but not feel at all surprised. Because - what would you do?


I wonder if you can begin to imagine the secrets and lies and the pussyfooting around that go on in a family where someone has Huntington's. It's not like any other illness; if someone in the family has it, then someone else will too, and the next generation - no buts nor ifs, it's just a question of who, and when. Not everyone can handle it. There's a dramatically higher rate of suicide than with other long term medical or neurological conditions, while suicidal thoughts increase exponentially for people expecting a positive diagnosis. No-one wants to rock that boat for someone they love. It can be easier not to talk about it, just bury your suspicions and pretend it's not happening, and many families do; I'm sorry to say that ours was one of them.

That's Mum, Dad and Nick in the picture - Mum in the early days of her illness but pre-diagnosis.

She'd been gone a good fifteen years or more when my brother started getting into financial trouble and couldn't seem to pick up a cup without dropping it, and had pranged his car yet again. At first we didn't want to believe it but we watched...watched the minute little jumps of his leg next to mine on the settee and the repetitive kick of his foot, heard the odd new catch in his voice. We couldn't be sure it was the onset of Huntington's but the signs were all there. I thought it but I couldn't voice it, and when my dad and I finally did say it out loud to each other we both agreed we were afraid to say anything in case it tipped Nick over the edge.
He was so low at the time and had always said that if he ever thought he was showing early signs of the dreaded illness, he would jump off a bridge. Or drive his car into a wall, late at night. He had said all along that he would kill himself rather than end up like our mum. What were we to do, call his bluff? So we watched, and waited, and read the books and did our research but didn't say anything to the person we loved so much because we were so afraid of what he might do. I hated myself for it but also knew just how stubborn Nick could be, and what a capacity he had for self destruction.
We all lived in different cities apart from each other but we were all tiptoeing around the same elephant in the room for three whole years.

The saddest thing was that when Nick finally put two and two together and acknowledged to himself what was happening, he felt relief. And now he knew, he didn't want to kill himself, he wanted to live. But he also wondered why, if the signs had been there, no-one had said anything.
And I had to tell him that I had been afraid of his mental state and just hadn't dared to broach what was, either way, a death sentence.

Now Nick is gone, and with no HD marker in my DNA to pass on to my son, I've got no direct line to Huntington's, but it still affects everything. I hear stories like this in the news and feel like a Greek chorus commenting from the wings, wondering what I would have done in that situation, or what I could have, should have done differently with Nick. His children are growing up, and at risk. They've seen what happened to their dad and read this blog, but they also need to get on with their lives and studies and their own hopes and dreams, and for a few years concentrate on those.

But what should families say to each other? How do we talk about this most difficult of subjects? I still don't know how we would have done things differently with Nick in the circumstances, but if you know you have Huntington's in your family then my belief is that you have to say something.
It's not the absolute end of the road. None of us wish an illness like that for ourselves or our loved ones, but gene positive or no, we should live the fullest life we can with the health and resources we've got, and if you do know you're going to develop the illness then now is the time to just carpe the bejaysus out of the blessed diem. But that's easy for me to say, isn't it?