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.  

Care Dilemmas

We have found a PA for Nick who has started taking him out for lunch midweek, and she is jolly and sensible and kind. She hasn’t batted an eyelid over the cumbersome wheelchair, while the others had been saying it wouldn’t fit into their cars or that Nick was too heavy to push, and last night she and her partner took him out to a gig!

I had a long chat with her beforehand to make sure she had all the information she needed, because seeing him in the evening is very different from a lunch outing. For a start, he had been drinking all day – I’d arrived around 1o'clock with his Saturday newspaper and he’d already poured a full beaker of wine.

So he’ll need a limit on how much he has to drink out, and to watch for him suddenly tipping backwards in his chair and capsizing it, which he seems to do when he’s had a few, or suddenly lurching forwards and bumping his head on the table.

He’ll need something manageable to eat, and his nightime meds that come in a different pack, and help to get undressed and into his pyjamas.

No problem at all. She was utterly unfazed. They had a marvellous time and today Nick is so happy. He went out on his own, with new people, just like a normal guy the way that he always used to, and if there were anything I could wish for him apart from not to have this wretched disease in the first place, it would be that.

And I cannot tell you the depth of my relief and relaxation – that knowledge that she knows what she’s doing and that I could absolutely trust her to look after Nick. It felt like - oh, like a clenched fist uncurling in my chest, and the kind of deep unraveling that I had on holiday but all too soon got taken over by crisis and fire fighting and the ongoing disappointment of things not going according to any kind of plan. 

It made me realise just how untrusting and wary I have become - and for very good reason, because 99 % of his care continues to be unreliable.

The carers don't come in on a Saturday lunchtime as he normally goes out then; because he was going out in the evening instead, I did his lunch and tablets. As I was signing the medications sheet in the carers’ folder, I noticed what time they had come to give him a shower, get dressed and have breakfast – 11.45am. So he would have eaten his porridge around 12.15, about forty minutes ago. 

On a normal day, they’d be coming back within the hour to do his lunch. Nick is so stoic but really, I can't bear it. 

I’ve made a fuss about the timings and for a little while it improves and then soon slides back into them turning up ridiculously early, ridiculously late, at any old stupid time. Yes, I know it’s a win that someone helps us out and that they turn up at all, but there are just so many variables and the enforced feeding of meals at stupid times is such a constant erosion of all Nick’s rights and dignity.

It gives me a permanent lump in my throat and knot in my stomach, a feeling of anxiety and pent up rage that just won’t go away – a silent scream that this just isn’t right. And remember, I know, I have worked as a carer for one of those big contract agencies, and it is just absolutely shitty how people are treated. I hated going in two hours late to a poor lady unable to get out of bed unaided, who might have wet the sheets and be sitting there crying, humiliated and hungry and alone. 

I would have a rota with six other people before her, and barely any time allotted for crossing the city during the morning rush hour, of course everyone was constantly running late but it was shameful. 
Invariably I would tell the agency so and beg them for more appropriate timings for the bed-bound and needy, invariably they would promise to "escalate" the issue but we both knew it was the equivalent of closing your eyes and going, La la la I can't hear you. 
Really, the whole business of social care, and local authorities using the lowest common denominator for their contract agencies, is just a soul-curdling thing.  

So I continue to look for another provider, and this seems to be much harder than you would think as Nick's needs are complex but the address seems to be the real deal breaker, living as he does on the cusp of two postcodes. But in the meantime there is lovely Helen the PA, just for a few hours a week, and oh my goodness what a game-changing blessing that is. 

Seeing with new eyes

I have had a holiday.

A proper, leave your brain at the door along with your English money and your boots and jacket, holiday. Late summer Italian sunshine, still hot enough to need a hat and sunscreen. Bright blue skies and salty sea, warm enough for bathing. Lazing over coffee on the roof terrace overlooking the Adriatic, strolling through quiet streets of old polished stone, lingering in cafes and watching the world go by.

I went away for a whole five days and four nights, and Nick was fine and the sky did not fall in.

Just half an hour before leaving the house, I had been on the phone to the council about Nick’s broken door, trying to get a definite appointment and worried that the request for an urgent repair had somehow gone onto the back burner.

I spoke to a very jobsworthy sounding woman who said that inspectors would need to come and look at the door before any repairs could be done, and they would contact me in the week to arrange this.

I just felt despair as how could I swan off into the wide blue yonder when this was all unresolved and my brother was unsafe at home? I am the only one authorised to speak to the council on Nick’s behalf so what would happen if I wasn’t there?

After a lot of negotiation she finally agreed to let Simon deal with things in my absence and he fielded the whole situation with more grace and ease than I could possibly have managed. Except that even he could not work a miracle, and would you believe that the bloody thing is still not fixed – that’s almost two weeks from my first call for help – and the door is propped open with a Heath Robinson contraption of duck tape on the frame that has to be replaced every morning because Nick kicks and scuffs it as he goes past. Yes I know we could have got one of those child-proof door wedges but I had reported an emergency and been told it would be dealt with the same afternoon. It never occurred to me that we were going to have to wait all this time. It is still an accident waiting to happen, only somehow, miraculously it hasn’t happened yet.

I was still fretting when I arrived at Brindisi airport in the delicious heat of the evening with friends coming to pick me up. Even with Simon taking over, there were still so many things that could go wrong and God knows, I had good reason to worry.

But that is exactly why holidays are good for you. We all need to unwind and breathe some different air sometimes, empty our head of all the what ifs and fears, be another person if just for a short time so that we can go back into our lives and carry on – otherwise the pressure just becomes unsustainable.

With the help of two of my oldest, dearest friends and some Italian sunshine I actually let go of my worries, and I had forgotten what that felt like, just to let go of all that weight of responsibility. 

When you're so responsible for another person, it takes a lot to step away. 

And Nick is fine. I came back to him with a bag of Apulian pasta and some duty free wine and it is lovely to see him with new eyes and hear what he’s been up to. We’ve missed each other. 

I can go back to my life, the appointment fixing and the dealing with the council and the carers and the neighbours and the bank balancing and the shit shovelling and the rationing of wine with a new spring in my step and a cheerful heart. Once again, I think how brilliantly and bravely my brother deals with his illness and appreciate the fact that we're together despite everything.  

I feel rested and relieved, and very very lucky. 

Every Day SHeroes

I have moaned, oh how I have moaned, about my brother’s carers. And with good cause because they have driven me halfway up the wall.

But when the weather is as extreme as this – when the snow just keeps on coming, when the roads are so bad that ambulances are getting stuck and having to be bailed out by volunteer mountain rescue – when buses aren’t running, when schools are shut and routine hospital appointments are being cancelled – spare a thought for the legions of carers who carry on doing their job in the foulest of blizzards.

I worked for a care agency a few years ago during the last spell of memorably heavy snow (though I don’t think it was anything to compare with this Beast from the East) and on a day when school was closed and my husband worked in another town and was told not even to try to come in, my son couldn’t understand why I was still going to work.

“Because people need medicine and food and to go to the loo, even when it’s snowing”.  

Yesterday I trudged the ten-minute trip down the road to my brother's flat as if it were an Arctic expedition. It was mid morning and he was still in bed, the flat in darkness with the curtains closed and the cat was wailing for food. But to my amazement the carers had already been in first thing to give him his morning tablets (and, it turned out, already fed the cat, but you know what cats are like) and prepared him some breakfast. They came back a little while later to help him get washed and dressed, and I realised again just how grateful I am that someone else is doing all that – for all my mutinous thoughts of firing them and taking on all the care myself, there’s no way I could do it really. 

They said they were running about two hours late but just about managing to get round all the people on their list, prioritising anyone in need of medication. Food and personal care (that’s help with using the loo, folks) next, and then all the other stuff, like just making sure people were OK, would still happen but not necessarily to any kind of normal timescale. 

I was just impressed that they got there at all, because their average rota takes in several postal districts across the city and even on quite big roads the gritters can’t keep up; even the small amount of traffic is crawling along pathetically, the snow keeps coming down, and honestly it is mental out there.

So to all the carers and health workers who can’t just look out of the window, decide they’re having a snow day and go back to bed – who put on their big coats and boots and simply get on with their work to help the frail and needy whatever the weather, a massive round of applause and my heartfelt thanks. You are brilliant.

It might be a snow day for some of us but for many people it’s really a matter of life and death.

Gratitude

Last week I started a deliberate project of being thankful for small things, because so many of the big things seemed out of my hands.

Also, I just got so sick of being permanently angry and complaining, so worn down by continual difficulties and obstacles, that I felt utterly defeated. What was the point of all this effort? 

I just started expecting the worst. When that happens, you become brittle, angry and permanently on the defensive. Even when you truly believe that the next transaction will go smoothly, it’s as if you give off an invisible signal inviting trouble. I can’t help thinking that the expectation of conflict can become a self-fulfilling prophecy.

There had to be another way to deal with it all. 

I made this list of reasons to be grateful to Nick’s carers, and it was an interesting thing to do because I started appreciating them more.

I am grateful that they come three times a day to give Nick his tablets so he gets the regular medication he needs.

I am grateful that they nearly always make his bed nicely.

I am grateful that their visits break up his day when he might otherwise be alone.

I am grateful that they feed the cat.

I am grateful that they are (mostly) reading the menu book now and following the food preparation requests.

I am grateful that they do the washing up and vacuum the carpet.

I am grateful that they are starting to put card and plastics etc. in the recycling bag.

I am grateful that it takes some of the load off my shoulders.

I am grateful that Nick seems to like them.

I am grateful that things seem to be gradually improving.

Have they suddenly picked up their feet and transformed magically overnight? No, not really. When I visited yesterday evening they had not switched off the washing machine or taken the damp clothes out and hang them to dry, as politely requested the night before. 

They seem to have a problem with giving Nick a pudding (which I have called by various names, “dessert” “sweet” and even specifically named, “chocolate mousse” or “trifle”, all to no avail) 
It just seems to be an alien concept to them.

He has developed a really sweet tooth over the last couple of years and craves chocolate; left to his own devices he would polish off a four-pack of Snickers bars after tea every night. It’s weird for me to see this when chocolate bought for the children used to sit mouldering in his cupboards for months at a time because he just wasn’t bothered himself. Now he loves it, but those big chocolate bars are a choking hazard as well as terrible for his teeth.

Luckily he also loves sweet, creamy desserts, which are actually something that dieticians recommend for HD because they are calorific and easier to swallow.

So we buy lots of these and I write it in the menu book every time asking the carers to give him a dessert after his main meal but it’s hit or miss whether he gets something or not.

One day last week I saw the lunch that they had prepared for Nick with a slice of blackcurrant cheesecake nestled carefully in the same bowl as his fish pie and chopped broccoli.

I had to add something to the list:

Just when I thought I had seen it all, I am grateful to the carers for surprising me.

It really is A Wonderful Life

This week I have heard some shaking news. Two people I know have had their respective all-clears from test results for illnesses that would have been deadly. I think both of them expected the worst and now need to recalibrate their whole thinking. I know what that feels like after having the genetic test for HD. The reprieve from a death sentence brings its own shock waves - huge relief and joy of course but a kind of half life of strange mixed emotions too. It's not always simple. 

In the same week, a beautiful young friend has been terribly injured in a motorway car crash, has not regained consciousness and is not expected to live. Someone just stretching her wings, with so many hopes and plans ahead, so much talent, just gone.

You can’t make sense of it.

How fragile we are, how much of a mystery life is. How much we waste of it and take it for granted. When I hear this news I realise yet again how precious it is just to be here, breathing and feeling the sun on my face (yes, in December!) and able to hug my loved ones.

I think of how rubbish things seem now for Nick and how much I fret about his quality of life - but he IS alive, and we can still cherish the moment and the time together. For all the frustrations and furies and everyday grieving, we are here together with a bond of love. Terrible, wonderful news that reminds me just how thin the line is between life and death - it doesn't half make you want to carpe the feck out of the diem. 

So I will shrug away the non-arrival of the promised parcel and the peeling paint in our hallway and all the silly little things that are bothering me, and Nick will get extra tenderness and hugs today, even when he's had a skinful. The sun is shining and we're alive. 

Yep, I sound like James Stewart at the end of "It's A Wonderful Life" but hey, it is almost Christmas.