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.’ 

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. 

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.

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?

Life After Caring

Six weeks have passed and Nick is still gone.
I've already got used to having more time, more freedom, more space in my day and my head.
The to-do list looks different: "Buy coffee" "Check car insurance" and even "take library books back" but there are also bills to be paid and a foreboding pile of probate forms to fill in with the required documents - birth, death, marriage and divorce certificates, inner leg measurement, IQ and shoe size.
Boxes of his things are piled up in my room and await sorting out. Diaries, letters, bits and bobs of memorabilia, pens and badges and old concert tickets. They will continue to sit there until I can face it, which isn't just yet.

It's Saturday morning and the physical memory of our Saturdays still tugs at me - I'd get his i newspaper from the shop up the road and then walk down to the flat. The carers used to come in early at weekends to dress and give him breakfast and he'd often have gone back to bed so I'd come in, put the kettle on and wake him up with hot coffee and a crisp new paper.
Saturdays are different now. The familiar path I took then and every day, several times a day, is no longer mine to walk.
I don't miss it and that surprises me, but approaching the door there was always a feeling of dread alongside the love and devotion for Nick - what was I going to find when I walked into the building?
So it is a great relief not to have that worry all the time. I'm gradually stretching in to the new expansiveness of it. But I miss him.

On that first frozen Saturday evening when we went to the flat to feed Smokey, the first thing we saw were his poor misshapen slippers, just kicked across the room where he'd taken them off before going out to his last lunch. My Christmas present from last year: stained blue corduroy with the stuffing leaking out from his perpetual chafing and scuffing, due to be replaced - or so I thought.
I can't bear to throw them away just yet.

His favourite stripy jumper, washed thin and holey, is mine now and it still smells of him. I don't want to wear it all the time but I do think there is a need for a "grief wardrobe" (again, the Victorians knew a thing or two) where you are allowed and encouraged to wear your dead loved one's clothes like spirit arms to wrap around you. And fairy tales knew this too, this need to warm your bones with the loved one's scent.

Anyway, we go on. I'm so glad that we no longer have to worry about the carers, about the availability of medications post Brexit, about whether the medications were right in the first place and if he was taking too many, about the increased coughing and choking and continence fails, about the horrible neighbour, about all the little big things that added up to daily anxiety and stress.
I'm glad he has not had to suffer further indignities and that he finally felt so lucky and loved.
But I miss him.

Sorry For Your Loss

Bereavement is another country, a place you didn't plan to go to. Even if you have been here before - and I have, so many times. You'd think a person would get used to it.
But you find yourself in this parallel universe of bereavement as dazed as if dropped from a great height. You've been here before but each time the landscape is a little different and the language of this country changes too, as alien as it is familiar.
Each new day here has things to navigate that simply floor you, like how to tell someone who doesn't know yet what's happened, or how to buy a newspaper without automatically reaching for the one you used to get for him. Or even (however much I want to) how to have a normal conversation about something else without bringing the subject back to the person you've lost.

I am clear headed about Nick's death, it was uncannily timely and as we've all said, he couldn't really have picked a better way to go, and for that I am beyond glad. We celebrated his life whole heartedly and every old photo reminds me of what a good one it was. And of course I did so much daily grieving while he was alive, we all did, seeing him gradually losing every drop of independence and physical ease, flattened by the monstrous illness. I'm so glad that's all over.

But I miss my brother. Not just the helpless person I've cared for over the last few years, but my friend and companero and partner in crime; the person who knew so much about me and I him, who
shared all that history and completely unconditional love.
And I miss our dad, and our mum, and Nana, because all those other losses suddenly swing into sharp focus in this strange but awfully familiar new landscape.
All my lost babies and my dear friend Dimi and my cat Delilah. When bereavement hits you, all these old heartbreaks come up to greet you.
Although I'm way through the acceptance stage of grief for them all, it doesn't stop me being sad.
I need the company of gentle people, or no company at all, and it is one of life's great ironies that at just this time, when the funeral is over, there is Stuff To Do.

In the first couple of weeks after Nick died, I had to keep going. So much paperwork, people to notify and decisions to be made. The flat to clear, funeral expenses to organise, speeches and sandwiches to prepare.
It was good as it only seemed like a variation of the constant shadow-boxing of the caring role and kept me focussed.
Now that the initial pressure is off but there is still a ton of admin to do, it all seems so difficult.
Even the simple things are like mountains to climb. A deep, melancholy tiredness is taking over and sleep is either as dense as falling down a well, or just not happening. I catch myself staring at phone numbers to ring and letters to sign as if they're in a foreign alphabet. It's exhaustion, of course, it's only natural.

Part of the tiredness does come though from having to steel myself yet again to talk to someone on the phone. I'd say 80% of the receptionists I've spoken to in the last month have not had a clue how to deal with a bereaved caller. Cumulatively it's quite shocking, though mercifully outweighed by the sheer loveliness of every single person who had had direct contact with Nick.
But I have had some really staggering conversations with people who have either not seemed to bat an eyelid at the news, or not even listened. Phoning one organisation to say that my brother had died, I had this dialogue:

"I just need to ask you some security questions. Did you say it's your son?"
"No, my brother."
"OK. And where is your son now?"
"er, Sorry?"
"Your son. Where is he now?"
"I'm sorry, I don't understand. I'm phoning you about my brother"
"Where is he now"
"Er...In the mortuary"
"Oh. I thought you said she'd moved house."

Yes, I complained, but fuck it, I shouldn't have to.

I've also had a couple of calls where I say I need to report a death and the receptionist says cheerfully, "That's fine, and how's your day going today?"

Imagine being really tragically bereaved and having to make these calls about a child, say, or a partner you expected to have the rest of your lives with, and getting these responses.

With my old campaigning head on I want to do something about this because it is wrong, wrong, wrong. All of us are affected by loss and no one goes through life without it.
We might not want to be reminded of this on a daily basis but can we not find a better way to treat each other?

A Life Less Ordinary

We had such a splendid send-off for Nick on Friday. As funerals go, it was a jolly good one and I was so touched to see people from all parts of his life there to say a last farewell. It was a day full of music and conversation and even laughter, a proper celebration for a life so well lived. 

It doesn't quite feel like goodbye; he's with me in so many ways and as we had to clear the flat in such a hurry, the memories are all around me and will be over the next few months as we slowly sort out the rest of his things. 

Everyone spoke so beautifully and from the heart. This is  part of my eulogy for him, thinking about the last few years together and what they have meant.

"...When I think of Nick in his glory days he seemed to collect watches, nice pens, designer clothes and girls without even blinking. He had to look good for his work as a hotel manager and he always had the sharpest suits and the repartee to match. 

He met a woman he adored who was more than a match for him and they got married and had two beautiful children and when you look at the photos from those years you can see how radiating with happiness he is. He really just seemed to have it all. 

So it was particularly hard that of the two of us, he was the one to inherit HD, one of the nastiest illnesses that anyone can have. It seemed so cruel when he'd already cheated death twice in spectacular style. I felt I should have taken it on, not my little brother. But the miracles were all used up and his luck had run out.

Little by little the effects of the illness took away everything - his livelihood, relationships, money, his mobility, his dexterity and his speech, the capability to wash or dress or feed himself, his ability with figures and words and his mental alertness. Even the quick-off-the-mark sense of humour that had been his super power. You could weep with rage about it and the pity of it all. Also, he was absolutely deaf as a post. 

"Somebody Up There Likes Me" might seem like a strange choice to play for someone who lost all his luck. 

Nick had asked for it to be played at his funeral, and I have to admit I raised an eyebrow. 

But then I started thinking about the real miracle of his life: The way he dealt with his illness and his courage to keep going. Although he had lost so much, he always kept his dignity. When he had lost so many of the things we think make someone a man, he became more of a man. 

Never complaining, always cheerful and stoic, grateful for everything anyone did for him and happy to see you. 

Despite everything that could have knocked him down he was still up for it, still engaged with life and looking forward to things. 

He made friends, he had family and children who loved him, he had his nice flat and his cat and his boys' nights out and lovely people taking him out to lunch; he had his wine and his Netflix and his hot shower every morning. 

The fact that not just once but twice, by pure luck he had ended up living just a few minutes' walk from me and my family. What are the odds of that happening with a council flat? 

I realised that he actually felt lucky, and yes, he really was. And the way he died was maybe the luckiest thing of all - happy, relaxed, out for lunch with one of his favourite carers at the pub he always used to go to as a lad with his friends when his whole life was just beginning - no pain, none of the terrible long drawn out deterioration I was secretly dreading. Instead his heart just stopped. 

He quit while he was ahead, but what has been clear through all the shock of sudden parting is this - his life was transformative. 

He inspired and encouraged so many people and every card and tribute we've had says the same thing. 

I feel so grateful that Nick had the life he did and felt as loved and connected as he did and that his spirit has so touched the people around him.

Somebody Up There definitely did like Nick, and it's why we are all here today to celebrate his life. What an extraordinary one it has been. You are an inspiration. Here's looking at you, Bro."