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.’ 

Let Love Rule

It's Carers' Rights Day today and I'm looking back over the past year and what I've learned.
Last year was characterised by panic and emergency. This year we've had our share of emergencies and I've often been overwhelmed, exhausted and frightened, but the hyperventilating midnight panics have worn off and I'm learning to surf the crazy waves like a zen surfer. Patrick Swayze in Point Break, that's me. On a good day, at least.

I've been thinking again about love.
As my panic and desperation to make everything all right recede, there is more room for the simplicity of love.
The love is always there, but lately I'm feeling less resentment, less guilt, and more compassion for Nick, and for myself.
Finding it easier to be present - just hanging out in the room together, spending time. As I get older the concept of "spending" time is interesting and I want to spend it wisely, luxuriously and not let it run through my fingers. Spending time with someone who has a progressive illness makes this particularly apt.

It is really really important to have time out for yourself too, to come back to yourself and re charge your batteries. Loving can't half take it out of you.
Exercise. Humour. Sleep. Friends. Pets. Music. Films, a fabulous book you can escape into, any kind of parallel universe that takes you somewhere else for a while - all these things give you perspective. And nature. Nature is the thing that saves me. And art.

As carers we're all surfing those crazy waves all the time while making it look easy; it's amazing to think how strong and skilled we must be.
What keeps you going when you're looking after someone? And how are you going to celebrate yourself on Carers' Rights Day 2018?

https://www.carersuk.org/
https://carers.org/

Going out. Hooking up.

This week we had the first meeting of a Sheffield support group for families affected by Huntington’s. When I say “we”, six people turned up and only three of us were actually local. And one of the six was Diana, our regional advisor, and another one was a man who we gradually realised had nothing to do with HD at all but had heard me talking on local radio earlier and just rocked up for a cup of tea and the craic.

But hey! You’ve got to start somewhere….

The Salvation Army had given us a cavernous room set out like a lecture theatre with a tea urn at one end and a flip chart at the other. We huddled together at the tea end and chatted, awkwardly at first. Why have we come here and what do we want out of a support group? And are we really in such a minority to want a support group at all?

I can see why people would not want to get involved. Huntington’s is like a tightrope that you walk along precariously, not daring to look down but keeping your eyes on the middle distance (maybe this is a terrible analogy as I have never walked a tightrope and don’t have the slightest intention of doing so.)

The tightrope is also like a perpetual conveyor belt taking you somewhere you don’t want to go. You know what is ahead but you can’t focus on it because you’ve got to stay upright in the here and now on this spot. So in any group of people with HD there is always going to be someone at the next stage along and it’s like seeing your future, not in a good way.

Nick had wanted to come, though, and I guess we’re at the “nothing to lose” stage – he knows he can’t pretend he’s not ill, he’s in a wheelchair and can’t stop moving and his hands and feet bash out of their own accord every few seconds. But this is how it is, and he’s come to terms with that and doesn’t want to hide any more. As a result, he doesn’t get half the stares and comments that he used to. Now, if anything, people are accepting and often gravitate towards him as someone interesting to talk to.

I took him to the theatre yesterday; he had really wanted to go, and I thought it would be a nice thing to do for us both. Which it was – but coloured by the phenomenal strain of sitting beside a person with HD who can’t keep still in their wheelchair, whose wheelchair is creaking and croaking like a ship in a high wind, and moving slowly forwards and downhill on the carpeted slope. I realised that I just hadn’t thought this through at all. He could not get comfortable. With every fidget and shudder the wheelchair would jolt forwards or sideways another few inches, and every few minutes his arm or a foot would lash out and I was terrified he was going to whack the woman on his left.

I was supposed to be on his left but he kept moving away, and so every few minutes I would yank the wheelchair back and vaguely into place. Hanging on to the handles and crossbar with both hands, as if in a hurricane now, it took all my strength. Never mind “Macbeth” on the stage, the real drama was happening right here.

I genuinely thought someone might complain, as happened with the autistic boy recently in the cinema, but everyone was so kind. The ushers were fantastically helpful and when Nick (to my amazement, as the first act finished with me sweating and spent as if it had been me on stage) said he was having a great time and wanted to stay, I asked if we might possibly sit in the box. They were so kind. Nick had to negotiate a couple of steps up there but it meant he had a choice of two seats, the wooden chair in the box or his wheelchair, and we were on our own and not barging into anyone, and the poor people who’d been behind us could have an unrestricted view.

The ushers settled Nick in his new seat while I went back to get our coats and make my apologies, and by the time I got back to him, a woman who’d been right behind us was next to him in the box engaging him in deep conversation. I had thought she’d be really pissed off but she was sweetness itself, telling him about the restoration of the theatre and asking him how he was enjoying the play. Afterwards we had several people smiling and chatting to him almost as if we really were VIPs emerging from the Royal box.

So, I’m glad we did it. I have an ache all down my side and bruised hands and arms from the holding on for dear life, but Nick had a fabulous afternoon and actually so did I, but don’t ask me to do it again any time soon.

It’s the Nick factor though – continual small crises (and sometimes big ones) combined with an unusual charm that seems to draw people in. There is rarely a day without incident (he went to the theatre with one hearing aid as the other one had broken for the third time in a week, what with his flinging it across the table when he takes them out. He has already snapped the robotic arm for the remote control that was replaced yet again two days ago. And at nine o clock last night as I was lying blissfully in a steaming hot bath at home, I got a call on the batphone saying that he had broken his aerial (how???) and couldn’t watch TV.

This is Huntington’s. This is our daily reality, and there are variations on the theme for everyone, but it’s why I feel the need for a support group – just to tell someone, just to have someone else say, yes I know what that’s like. There was someone there at the meeting on Tuesday who didn’t have that with anyone else, and I so felt for him.

So we decided that we would keep meeting, even if it’s just three women and a dog for the time being, and knowing that a lot of people don’t want to be involved because they’re only stepping on to the ladder up to the tightrope and really don’t want to have to face these problems just yet.

We’re going to do some fun stuff. Food seems to be the main theme for the moment, and being around animals, and maybe (God help us) some singing of songs. It’s like the first tentative going-on-a-date where you just need an activity alongside the real business of getting to know each other. 

Get in touch if you want to join us, or if you already belong to a group and have any tips. Just please don’t suggest the theatre – although, having said that, panto season is coming up and perhaps that’s one place where audience participation and a comedy wheelchair will be actively encouraged.  

Keeping the Dream Alive

I get in the car and drive into town to pick up a delivery. There’s an old tune playing on the radio that I used to dance to in my glory days, the sun is warming up the day and I can roll down the car windows with the flick of a switch. The roads are clear and I’m feeling well for the first time in a couple of weeks. I slept well and woke early and lazed in bed for a while with coffee and a really good book. I realise how very, very lucky I am.

Yesterday was a bad day and I’m still feeling a wee bit tender around the edges from it, not really wanting to say much or hang out with people (though no choice there as it happens to be a busy weekend and my husband’s birthday, with several outings planned for Nick. But it’s OK. Today is a new day and everyone is safe – that’s my mantra these days.)

Although I was exhausted and despairing yesterday, I’ve woken up with some new ideas about the drawings I want to do and what I’m going to do with them, and one way or another how I will make the time to begin.

They might not be going very fast or far right now but I’ve not lost sight of my dreams, and I’ve got the sketchbook open on my desk to prove it.

It all helps to re-charge my batteries some more to be a better sister to Nick and keep bashing on. And, since I'm conscious of Nick's own dreams too, I want to live mine as best I can for his sake as well as my own - I don't know why but it seems important.

Do you have dreams, dear reader? Whether you’re a carer or not, we all have those heart longings for the thing you wanted to do since you were a child; so few of us actually do them, yet I believe while those dreams persist, there is always hope.

How do you keep your dreams alive? That’s what I want to know from other carers. 

Where the light gets in

The weather is beautiful, at long last! My flip flops have come out of hibernation and the coats and scarves have finally gone back in the cupboard after doing an in-out dance for weeks.

Nick sits indoors with his door into the communal garden shut and the curtains drawn. Every time I come in, I throw the windows open and let the air and the sunshine in. He says he doesn’t mind either way, but his hair is damp with sweat. HD trips your internal thermostat so it’s very easy to overheat, but he doesn’t notice.

We can wheel him in his chair right to the edge of the door looking out into the garden and it’s a good place to park for some fresh air and light, but really he just likes his habits and to sit facing the other way with his radio, newspaper and TV. 

Well – at least the TV and radio are working again and he can immerse himself in Netflix to his heart’s content. Science fiction, thrillers, science fiction thrillers, he can’t get enough and it’s all there at the fumble of a button.

He’s got to keep the sound down, though - we’ve had complaints again and the upstairs neighbour was making daily threats to Nick about the volume on his radio.

We got him some wireless headphones but he drops them, struggles with the tiny on/off switch or forgets to wear them altogether, so sometimes the radio does get turned up very loud. I was getting a bit scared as the carers reported that the neighbour was very angry, banging on the ceiling or coming downstairs  and shouting at Nick; on several occasions he’s tried to force his way in and they have had to prevent him. 

To my utter amazement and eternal gratitude, the housing officer, the one I thought was so useless earlier in the year, has taken this on and had a word with Vic upstairs and given him a direct line number to ring. Whenever there’s a noise problem he’s to call that, not threaten a vulnerable person who is not completely responsible for his actions. We shall see…but at least it feels as if someone is actually listening to us and is trying to help.

The other amazing thing is that since I really kicked arse a month ago, the carers have stepped up and begun to operate in a – well, let’s not tempt fate and say seamless fashion, no, it’s hardly that. But they are doing all the things they were always supposed to do as part of their support plan, and other little helpful things (like do the recycling, put the wireless headphones on charge, etc) without being asked. They look professional and seem to be taking a pride in their work. I think it has something to do with the increased level of care they are giving Nick as his ability to feed or dress himself decreases. Suddenly they are Team Nick in a way they never were before when it was just very basic duties. 

They have even taken over the storage and collection of medications so I don’t have to think about that anymore. It has taken six painful months but I think we are actually establishing a level of understanding and trust.

It is such a help, because I can see very clearly that Nick’s health is deteriorating. He can’t focus, he is loath to get out of his chair unless it’s to the loo or into the kitchen to get more wine, his movements are significantly worse. Poor love, he just can’t keep still; it is sorrowful to see.

What’s to do? Except be thankful that I don’t feel I’m carrying all these different and complex issues completely on my own anymore, and that Nick has his Netflix and we can take him out in the sunshine.

Anniversary Reaction

It was my birthday this week. The floor is still covered in bits of pink tissue paper and there is an alarming amount of chocolate and gin on the premises. It’ll come in useful, I’m sure.

Birthdays always make me a bit emotional, amazed and deeply touched to be at the receiving end of so much love and attention (like this year, when I have neglected my friends and been grumpy with my family and it really doesn’t feel deserved). 

I’m a lucky girl.

I’m also aware of time passing and that Nick has now been in Sheffield for a year; he arrived at the beginning of May 2017 and gosh, how much has changed.

It has sometimes seemed that we’d unwittingly won a competition to demonstrate Murphy’s Law, that every possible thing that could go wrong, did go wrong. Benefits and social services stopped, messages lost in cyberspace and the simplest seeming thing lost in translation. Everything, as if he’d vanished like a Jason Bourne by just moving from County Durham to Yorkshire.

I’d spent the six weeks before he moved talking to the local authority, the Jobcentre, social services and telecom company to register a change of address. I’d sent Power of Attorney documents by recorded delivery, had long conversations with officers in various departments and was reassured that the transition would go fairly smoothly. But no. Ohhhhh no.

I started calling it the Nick factor. Even the chain of opticians he’d always used suddenly lost all his details and had no record of any previous service, though his old branch in the north east knew him so well that they’d pull up a seat, get him a drink and replace his glasses three pairs at a time for free because he broke them so often.

Hours on the phone, dozens of dead ends, sending more registered letters and patiently re-scanning documents; meanwhile panicking about money because suddenly he had no income and was ripping though his savings, and panicking about the scale of his drinking, constant chest-pulsing panic because I’d had no idea it was that bad. And at the same time trying to protect Nick from my dismay because only when he came to live here permanently did I understand how much worse his health had become.

And now here we are, and we’ve become acclimatised to the new normal. Nick is living in a lovely flat ten minutes away from us, he feels safe and has settled into a routine that suits him. His various benefits have finally been reinstated (though I say this knowing that PiP may be just around the corner), and with a little care we can manage.

His TV is working and he can watch Netflix to his heart’s content.

We have compromised on the wine so that it’s now a box of lower-alcohol Perry a day rather than the 12% Chardonnay, and, cross fingers, we have just about got his care provision working out at long last.

So we’ve come a long, long way. It’s best not to look back, though.

This time last year, Nick could walk to our house, just round the corner from his old flat, and even to the shop a couple of hundred yards down the road. He could converse by text, make a phone call and pick up the receiver when I rang. He could make himself something to eat and feed the cats. He can’t do any of these things now.

I worried at first that it was laziness, now that he had us running around after him, but I don’t think that’s the real reason, which is simply that he just can’t.

When someone you love has a long-term illness it’s like a living bereavement. You grieve every day for all that has been lost and the pity of it all. You miss that person even while they’re alive. Obviously you don’t sit about wailing like a Victorian widow, you get on with the here and now and enjoy the time you have and find new ways to be together, but it is a fine art.

There are daily stresses and troubles, more than I can count, and every time I think we have come through a particularly bad patch of turbulence and can relax, something else happens. When you care for someone with HD I don't think you ever really relax. But here we are, a year on, and if this tumultuous year has taught me anything, it's that there is no point looking back to the way things used to be, and definitely no point trying to anticipate the future. Better to just try to be here now. It's my birthday week, licence to drink fizz and eat chocolate and the presence is my present.