Sunday

The B Side of Love

 ....I know exactly what I was doing this time last year. It was a Friday and I'd gone over to Nick's to spend an evening with him and make his dinner. Nothing special, actually there wasn't that much in the cupboards, but carefully assembled to feed him slowly so that he could swallow without a coughing fit. He fancied fish with mushy peas and for some reason I grated some cheese into the pea mash and started grinning to myself remembering The Fast Show and their Cheezy Peas sketch. I put a little quip about it on Twitter and got a snowstorm of responses. I told Nick why I was laughing but he didn't remember the show. He just wanted his dinner. Afterwards I thought, I wish it had been a nicer one. Something he absolutely adored, his very favourite - but how was I to know? 

There wasn't a dinner the next day. A year ago tomorrow afternoon, he suddenly tipped backwards in his chair at the pub and died. And somehow a whole year has gone by, has gone so quickly - and over the last few months, so oddly. 

I'm surprised at how emotional I am feeling, how tender. No regrets; we had spent so much time together and my only real regret was that it could have been more. But the sudden killer blow of loss is a thing that gets you at the weirdest moments, long after you would ever expect it. It stabs you in the heart, punches all the air out of your sails and leaves you winded. And it's a sad and uncomfortable feeling but at the same time as it should be. Grief is the B side of love, the side of the record you didn't plan to play. 

I drove home last night listening to a CD of Nick's that we had last listened to together, and imagined him  in the passenger seat so vividly that I wished I could tell him, oh I heard your voice so clearly today. Had a little cry. Felt better for it. 

And all I want to say is this: if you are grieving, or missing someone, I am sorry. It's a pain like no other, or maybe no pain but an overwhelming dullness and lack of joy. It's horrible. And there is nothing much that anyone can do to help except to say, I hear you. And, believe it or not, that one day - maybe not now, but soon - you'll look up, and life will go on. 


Tuesday

This time last year...

I have kept my diary for 2019 and every now and then look to see what we were doing this time last year. So much has changed since then that it almost feels like someone else’s life. It’s now eleven months since Nick died, and this time last year we were packing for him to go on holiday to Sandpiper’s in Southport. He was so looking forward to it.
We had bought him a new sponge-bag for his toothbrush and shaving things, and a very nice bottle of cologne. His radio, his little clock, his bibs and special sippy cup for his wine. I’d ironed his favourite shirts and sent exhaustive details of his medication and health issues to the medical team at the centre. He thought he might even try the hydrotherapy pool this time, so we'd packed an ancient pair of swimming trunks he probably hadn't worn for ten years.
Driving over the Snake Pass, we played some of his old favourite albums from boyhood – Dr Feelgood and Alex Harvey – and it was one of those truly happy times, that childish thrill of setting off for a holiday and singing along to favourite tunes with the car windows open and sun in our eyes. Being together having a craic, the way we always had. Being Nick, he was already wondering what they were going to give him for lunch and what time the bar would open. 
I had no idea that he only had a few more weeks to live.


Fast forward a year and I get a lump in my throat from this photo. He was so happy. He went in the hydro pool every day and loved it - the freedom of being in water, weightless for once. Every time I look at my diary and see what we were doing last year, it's a wrench to the heart and I miss him. We all do.
But I’m still so very thankful that he missed all this. It would have been awful for him, already with a nasty rattle in his chest and struggling to eat or drink without choking. I would have self-isolated with him as so many brave souls have and continue to do, and it would have driven me round the bend, but so much worse for him. The lockdown; the fear; the isolation; the carers coming in visors and masks or not coming at all, because he would have been so vulnerable; the not being able to go to the pub or out to lunch, yet another one of his few pleasures taken away, and the heart-breaking stoicism he would have displayed throughout. As the rest of the world makes tentative steps towards normal, it’s easy to forget that thousands of families are still in this situation, even more closed off than they were before. Largely ignored by politicians, shamefully so. Invisible.

I can’t help doing a countdown of the days as we approach the anniversary of his so sudden death. Is that ghoulish? Or does everybody do it? Hard not to, when you have last year's diary marking out the passing time. 
We will certainly mark the occasion; I thought perhaps a little socially distanced gathering in a local park, all drinking a spritzer in his memory. And it will also be a toast to all the carers out there, staying indoors and looking after their loved ones, somehow trying to keep safe and keep sane and treat each day together as the precious thing it is.  







Friday

House Arrest


I am so, so, so, so, so glad that Nick isn’t here today. Just thinking about it makes me go cold inside. Relying on carers to help him get washed and dressed and take his tablets morning and night and in between, needing those tablets delivered or picked up from the pharmacy, requiring frequent medical interventions from an array of different services, alarm pendant always round his neck to call out the emergency response team in case of accident, and he’d had a few of those  – for someone whose body had long since put him under house arrest, he saw an awful lot of people in the average week.

I wanted to do everything for him but it was impossible. There were a few periods when Simon and I tried to do all the care ourselves but we just couldn’t have managed it for long – his needs were so continual and complex, he was so heavy, so unwieldy, so accident prone, and still so determined to have some independence that it needed two people to help him in the bathroom and even the professional carers would struggle to stop him slipping.
And there were so many of them. The council care provider promised to send the same team each week but that rarely happened. He might see 20 different carers in the space of a week, with new faces popping up all the time, or familiar ones he’d got used to suddenly disappearing.
I used to rage as yet another new person let themselves in without ringing the bell, still munching a sandwich as they came in the door, said a brief hello without taking off their coat and then scattered the tablets out of the blister pack onto the mucky work surface to put by hand into Nick’s open mouth. Imagine that now. 
All that human traffic. All the other people they were in contact with. Nick so vulnerable as his swallowing and ease of breathing were getting worse all the time. He took it all with such equanimity but if he were still here now I would be absolutely beside myself with worry.

There were great carers too, of course, and these days I’m sure – I hope – they have better training: and what an amazing job they are doing just carrying on at all, going where angels fear to tread. Still keeping on and going out to work while the rest of the world is shutting down. For all the discomforts of self-isolating, it’s a luxury for those who can do it independently, or whose jobs don’t take them out of the house to go into someone else’s.

If you are highly at risk but totally dependent on another person to help you with the normal business of living, though? If all the people you would normally see are distancing themselves in order to protect you and themselves, if you are reducing or even stopping the number of care workers who come in and relying on a family carer, you are even more isolated than you already were. And what if that person you rely on becomes ill themselves?
It happened to me when I had a really bad flu the Christmas before last. Too poorly to move let alone look after Nick. Simon and a handful of other angels took over and luckily it was a slow period for breakages and other mishaps.
But it was one of the worst weeks of my life, delirious with fever and dark, hellish fears of what would become of us, of him, if this were to go on or if I got ill again. When you’re already chronically exhausted, as most family carers are, your health really suffers. It’s too bad though, when someone depends on you so completely there is simply no choice but to keep going. Other people can definitely take over in a crisis but for the sheer 360ness I’ve often talked about that being a primary carer involves, no-one else can easily do it all. That’s the trouble – you become co dependent. So being ill and unable to cope, especially if there is no dream team of angels to hand – it’s just too awful to think about. It is the carer’s worst nightmare.

I am writing this now from a different perspective, so thankful that Nick does not have to suffer, but with the memories still raw, scared and sad for all the people who are now having to do all this on their own. 
Paid carers and frontline health workers with insufficient protective equipment (a doctor on the radio yesterday was saying that it's the equivalent of the wrong sort of boots supplied to British soldiers in Iraq) if they have it at all, and only the most sketchy contingency plans. Unpaid carers already at breaking point now trying to provide 24 hour support - in isolation, knowing that any pockets of outside support they do have may be withdrawn at any moment. It's a mess.  
People are being extraordinarily kind and all the new connections springing up are hopeful and reassuring. When we stop being so busy for a minute, it turns out that we want to look out for each other. 
But the thing about being very vulnerable or impaired is that you're already on lockdown and not really visible to the outside world, so for all the noble community help programmes, you might still get missed out. 
Aside from demanding that frontline carers of all types get priority testing, if we learn anything from this situation it is that social care is something that sooner or later will affect everyone, and right now it's sooner. Underfunded, under acknowledged and poorly paid, the sector has been in crisis for years with the government wringing its collective hands but still looking the other way, and finally it cannot be ignored any longer. If any good can come out of this frightening time - and I think it will - then I hope it will involve the decision to put more money, more humanity and more dedicated attention into social care. The time really is now. 


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.