Another Swell Party that was.

Nick’s birthday seemed to come around again very quickly after Christmas.

I was still recovering from a second bout of the horrible flu and still not quite right – weak, exhausted, fuzzy headed and feeling utterly thrown by the smallest thing. Hadn’t spent much time with Nick, not wanting to pass on the lurg.

I’d got his presents already – chocolates, a new clock and some Velcro fastening slippers - but the thought of having to organise a celebration just felt absolutely one step beyond.

The trouble was, Nick had been talking about this year’s birthday since around June last year. I’d been pushing him in his Red Cross wheelchair on one of the first days of the glorious heat-wave, celebrating a perfect summer morning, and he’d started talking about January and the birthday party he wanted to have. Nothing like thinking ahead, I quipped. But for a few weeks, while most people were thinking about ice lollies and sunscreen, Nick was inviting anyone he met to his party – six months in advance.

Well, in the end, most of the people from out of town couldn’t make it so early in the new year and so soon after Christmas. But somehow, despite me not having my eye on the ball and then Simon going down with the flu himself, and despite him not using the phone anymore or ever going out unaccompanied, Nick’s invitations had hit the bulls’ eye and LOTS of people turned up.

Another lesson that sometimes I don’t have to it absolutely all. Admittedly, there wouldn’t have been any food without me, and Simon had heroically staggered to the supermarket and bought a load of drinks. And I had been fielding texts all week about the logistics. But a lot of the actual inviting was down to Nick.

And it was such a lovely evening. Another swell party that was. We couldn’t have wished for more.

One friend had made a fabulous chocolate birthday cake with sparklers on top, another had made a quiche at Nick’s request, everybody brought him presents and cards and he spent the evening surrounded by well-wishers and friends – and surprise guests of honour his ex-wife and children, coming all the way from the north east on a school night. Ok, well that was my doing.

But it all reminded me to keep giving Nick more credit for acting independently, and to give us both more breathing space.

It is so easy to flip into permanent emergency mode when there is constantly so much to be done, and Nick can do so little of it himself, or half the time even understands the need. I know realistically that none of those people would have been there the other night without all the back up that Simon and I give, all the time.

But the flu, not being available or hands on, having to ask for more help, has altered my thinking. 

First of all, Nick still does have an independent life to a higher degree than I might see, even if it is mostly internalised. 

Secondly, I really cannot do it all and the only person who expects me to is me. 

I’m still trying to figure out how other people can help, because many friends have said they’re willing, it’s just that I can’t quite summon up the brain power to put it all together. 

Maybe send out a weekly or fortnightly list of tasks and social spaces, time-tabled to fit in with existing appointments and the carers coming in? It’s worth a try. 

Has anyone else tried this? If you’re a carer yourself, what do you do to get more support when you need it? Please get in touch. I'd really love to know how other people manage. It's not going to get easier. We need to put our heads together and find more breathing space.

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. 

Isn’t he good?

Out and about with bro  in this gorgeous weather, we have taken him to a few summer fetes and local music festivals and it’s amazing how smoothly a wheelchair parts a path through the crowds. Nick has a ringside seat from the top of a hill or near the side of the stage and people are unfailingly smiley and kind as we push our way over the grass to a good spot. I remember something like this reaction when I used to push a pram in public places with a young baby, that sudden benign gaze from total strangers and a willingness to accommodate. 

It really wasn’t like that when Nick was still walking, because that was scary and unpredictable; I was always afraid that he would fall over, and of course with the classic HD lurch, most people assumed he was drunk and to be avoided.

Now somehow he is safe. If anyone assumes anything now, it’s usually that he has cerebral palsy; it looks pretty similar if you’re not in the know. There are a few stares, but mostly it’s a friendly nod and a smile as we pass by.

He even gets a few women talking to him, which always makes me grin when I think of the lady-killer reputation he used to have.

“You’ve still got it, bro!”

Actually, I’m quite disarmed by the kindness we see around us. It’s good to think that strangers might look at Nick and see a person enjoying a summer afternoon in the park watching a band like anyone else, not just an invalid being pushed about in a wheelchair.

But it can make me uneasy too. There’s nearly always a drunk bloke who wants to come over and shake his hand – why? Because they think they were at school together? Because he looks like a good egg? Or because he’s in a wheelchair and obviously impaired and has actually had the balls to come out and show himself in the outside world? Do they think it’s their good deed for the day or what? 
Or in their cups do they recognise another fragile soul who they can connect with? I wonder.

These encounters are pretty one-sided too, as Nick is so deaf that he can’t usually hear a word the other person is saying so he just tends to nod blankly, eyes not quite focussed, and that adds to the weirdness of them being so keen to talk to him.

I have had a few people asking me what’s wrong with him, and surprisingly many of them have heard of Huntington’s Disease, and that has to be a good thing.

But I don’t ever want him to feel like an exhibit or the cripple in the corner and I guess I am protective in these situations. Watchful.

Today I was approached by a woman who said she'd seen us before, and wasn't it a shame,

"Ahh - the poor thing." 

Nick was drinking a glass of wine in a plastic cup, in his best shirt, with the sun on his face. He looked happy. "He's so quiet," she continued, "isn't he good?"

What can you possibly say to that? Well, a lot, as you can imagine, but I was a bit gobsmacked. Again it reminded me of people from an older generation when my son was little who would ask if he was a good baby. I came to realise they meant did he sleep through the night. 

"No, he doesn't sleep a wink" I'd say, "but he's the best baby in the world!"

I don't think the woman is even listening as she clucks on, but I turn back to her and say, "He's gooder than you can possibly imagine. He's had an amazing life and it's not over yet. He's the best brother in the world." 

How do you have a Social Life?

It amazes me that I still get invited to things or have any friends left but miraculously it seems I do – even if quite a few of them are at a similar stage of life where they are looking after someone, worrying about an aged parent or coping with a troubled teenager, sometimes both of those at once.

When you have that going on in your life, you really need some kick-back time away from your caring duties. Leave the house, go out, see other people, talk about completely different things.

It’s very easy as a carer to feel you’ve lost your identity and to forget who you are, because so much of your head-space is taken up by the person you’re looking after. Especially when they have an illness like Huntington's that affects body, mind and every possible function. 

It's hard to sustain this level of care and dedication without recharging your batteries; you absolutely have to find time to come back to yourself, but it’s also important to be social and meet people as the person you always were, not just as a carer. You need to be able to break your routine and get some physical distance from your cares. Go for a walk, see a movie, have a dance, drink a few drinks, think about something else, laugh without feeling guilty, just lose a few degrees of your endless feeling of responsibility. 

It helps so much to have friends, “people who like you even though they know you “. 
The nourishment  from an afternoon out with a friend or meeting up with a few of the right people can sustain me for days, weeks afterwards. 

The trouble is, though I long to see friends and got to parties and have all those different conversations and so I make plans and put it all in my diary, so often when the time actually comes, something happens with Nick and I have to cancel. That has happened a few times, especially at the weekend when he might have a few more wines than normal and falls over or hits his head. Times when I am all dressed up and ready to go, except that I daren't leave him. 

Or – more difficult to be upfront about as not everyone gets it – I am just too tired.

It’s invariably the worst timing, just when there’s a fabulous party that I’ve been looking forward to for ages – but what d’you know, it’s at the end of a long day or a run of long days with meetings and health appointments and washing and shopping and cooking and cleaning and wiping up the spillage and all my energy feels as if it’s been sucked out with a vacuum cleaner. It seems so weedy but I can’t be the only one who feels like this?

And I feel teenagey, not sure that I want to go anywhere unfamiliar or talk to anyone new or have to account for myself as me. I miss the buzzy high from new conversations and emerging friendships but I’m exhausted and dull and have nothing to offer. If I ever had any sparkle it’s all come off in the wash long since. Since taking on this role it feels as if I’ve lost all my social confidence. And even with the friends I don't have to try too hard with, there are times when it is just all too difficult. 

I don’t want to stop making plans or trying to see people, it is so important, but it is impossible to guarantee whether come the day I’ll be able to leave the house. It's maddening but it seems to be all part of the new way of life where I'm as responsible for another adult person as I am for myself. 

I want to know what other carers do and how they cope. 

So – carers - tell me. How do you have a Social Life? 

Well did you evah?

What a swell party that was.

I was a bit wired and tense all day without really knowing why, just wanting so much for the day to go right for him. He’d had some cards already and in the morning we opened them and a few of the presents. Envelopes are beyond Nick now but he can tear open wrapping paper like a child, just flinging the bits on the floor, gleefully revealing some new aftershave, some chocolates and some audio books. An early Bruce Springsteen CD that he had always loved but had got lost or borrowed and somehow never replaced. A set of sturdy handled “good grip” cutlery to help him eat more easily. Some hankies and – piece de resistance – a very beautiful chunky pipe because we are trying medicinal cannabis as a muscle relaxant.

I am not totally convinced about this – is it just another avenue for his addictions? - but Nick says he really feels the benefit (well he would, wouldn’t he! I think to myself) and naturally both our teenage sons are keen to back it up with extensive research they’ve done on the internet. I’m still not totally convinced but if it makes him happy…and unlike the wine, he probably won’t be able to operate it on his own and will need some assistance. “What, from your lot?” said a friend, laughing raucously.

We said we’d drive him out to the countryside to have lunch in a nice pub, but I had gone over a kerb on the way and the tracking had suddenly gone AWOL so with the steering swinging wildly around like a dinghy at sea, we didn’t dare. It would have to be the nearest place with a car park, ten minutes from his flat. Which just happened to be a pub both Nick and I had worked in about a thousand years ago. All through lunch I felt terrible that I’d messed up his treat, but actually he said it was fun to be somewhere with so many memories of his younger self and all his antics.

And the party…I could just not have asked for more. We’d invited four friends of mine who have got to know Nick and really taken to him, there were the three of us, and lots and lots of food and fizz. Fizz all round. One friend brought flowers, another one some bunting from Nepal, everyone brought cards and wine and then, though I hadn’t dared expect he would really come, a surprise guest of honour – one of Nick’s great friends from way, way back who had seen the Facebook post and got in touch. I hadn’t told Nick as I honestly didn’t think he would actually come but it was like one of those tear jerking TV reunion shows to see him walking in to the room and Nick’s dawning register that it was him, his old mucker.

So it was a great birthday. A swell party. And more to come, even if our car is off the road and we have to push him in that blinking war-horse of a wheelchair with bits falling off it.