Kensington Gore

We went back to the dietician today to check on Nick’s weight and blow me down, not only has he put back all the weight he’d lost before Christmas, he has gained another 20lbs. Actually, more. He weighs over 13 stone now, which is a good four stone heavier than I am. No wonder he is such a bugger to push in the wheelchair.

And no wonder his shorts didn’t do up when we tried them on the other day to go out on our picnic in the nice bank holiday weather. I noticed he was getting a bit of a paunch but just thought it was the result of all the feeding up and that it was better for him to have a bit of extra weight on him – well, the feeding up has clearly done the trick a little too well, especially as Nick is now taking three different fairly heavy duty meds to calm his movements, and they are definitely working. His spasms are much less pronounced and he is sleeping a lot. I don’t really like this, the fact that he is on the super heavy-duty knock-out pills, just like Ma.

But given the choice between the motionless flat-out slumber I see him in now, and the awful constant jerking and flailing and inability to get comfortable anywhere, anytime, ever – I guess that’s the way it has to be. At least his sleep is peaceful. So he isn’t using up anything like as many calories by just being alive. 

We need to keep his weight stable, says the dietician, it’s always better for anyone with HD to have a bit of extra ballast, but that’s a lot of weight to gain in a short time and he needs to be healthy too.

So it’s back to semi skimmed milk instead of full fat, just banana with his porridge rather than cream and honey too, and although he’ll continue to have an extra tea time visit from the carers to make him a milkshake, he’ll just have that now and not the potato cakes or syrup pancakes to go with it. Job done. We have fattened him up like a prize bull. Now to put the brakes on a little.

Actually, I feel the same. After being so ill at Christmas and New Year, and then hurting my back and for two months not being able to exercise or walk for miles the way I normally would, I have gained weight too. I’ve not even been swimming as much. It has made me a bit depressed. I’m annoyed with myself for it, but at the same time, a slice of toast or two is sometimes the biggest comfort. 

Now summer is coming and my back is much better and I want to be able to wear my nice dresses again and fit into my jeans without having to undo the top button.

So we’ll both be watching our weight, which makes me smile really. For the first time in our long and colourful history, I will be my brother’s Diet Buddy.

We always like going to see the dietician as she’s in a health centre in a part of town we don’t have any other reason to go to, and the shops there remind us both of Consett. 

After leaving the clinic we went to the cool charity shop where Nick has always found new clothes, and bought him a pair of light trousers with a drawstring waist ( very handy) and to Poundland for a bucket and washing stuff so the carers can soak his clothes and bedding when he’s had an accident. Happening increasingly frequently although Nick is still either oblivious or not admitting it -  I can’t tell yet. Then we bought a load of food to make some calorie conscious meals to kick off his new regime. Semi skimmed milk, lower fat cheese and houmous, yoghurts… at the counter, paying, Nick suddenly barked at the cashier,

“Where is your toilet?”  Like a six year old, he’d sworn to me that he didn’t need to go when we were back at the health centre. Now suddenly he was desperate. The cashier looked blank. Not the sympathetic type.

Nick, I said, This is Poundland, not a public convenience! We’ll go back to the health centre and use the loo there. It's not far.

The kerbs in that area are not graded so not very good for pushing wheelchairs or prams. When that happens I might normally go round to the next chamfered kerb via the road, but this one is a dual carriageway ring road, the kind where the traffic never stops, so no. I braced myself to heave Nick up the last step onto the pavement, aware even more of his weight now that I knew exactly how heavy he was. It was the first time I had taken him out since I’d hurt my back, too.

I thought I could do it but, “I need the toilet, Sis!,” and he suddenly gave one of his unpredictable backward lurches and his arm flailed out, taking us both a bit off balance, and reader, I couldn’t hold on to him and the wheelchair tipped right over backwards, Nick landing with his legs in the air and his head in the road. I’d had a small bag of shopping over my shoulder and I must have dropped that as I tried to grab him to stop him going over, and all I could see was a smear of red on the black tarmac next to Nick’s head and I screamed.

“PLEASE! Can somebody help us!”

Two women in tabards came over from a café. Together we managed to right Nick and get him sitting up and then somehow, by the grace of God, manoeuvre him back into the chair, which now had a broken handle, one of the brakes snapped clean off by the force of his weight and strength.

“Are you all right, Nick?” I checked frantically for the source of the blood. Realising with relief that a bottle of tomato ketchup was smashed and dripping from my bag. Not blood, but good old Kensington Gore.

“I’m fine” – and he really did seem to be. As we’ve said before, he rolls like a paratrooper. But I felt horror and deep shame to have put him in that position, with his head in the road and cars whizzing past at 40 miles an hour. The bucket was broken,  I’d had it hanging by the handle onto the wheelchair. Our shopping was squished. My hands and knee were grazed where I'd tried to get between brother and hard ground as the chair tipped over. But Nick was fine. Not only that but he had managed not to wee himself, which is almost more than you could say about me under the circumstances.

Anyway, thank goodness we were right next to the health centre. Mission accomplished, toileted, wiped down and checked over, we drove back home and installed Nick in his chair with a drink while I unpacked the remains of the shopping. I made him some lunch. Omelette and mashed veg, followed by banana and ice cream. He yummed it all. 

He insisted that he felt fine and I went back later to check and make sure that he really was, and he was happily watching rugby on TV and asking me to hang up his new trousers. He was also looking forward to trying the low fat yoghurts we’d bought, miraculously unscathed after their adventure, and now washed clean of tomato ketchup and pumpkin soup.

The wonder of the decreased cognitive awareness and poor short-term memory!

Thank all our stars he was OK and no bones broken or any trauma as far as anyone could tell. 

But I was in a state of shock for the rest of the day. Once again, I see that I can't do some things on my own any longer and need to recognise that. But I'm not sure where we go from here. 

My Aim is True

It felt especially hard to leave Nick this time. I’ve been up to London to look at the Queen (no, not really) for three whole days and nights and saying goodbye to him on Sunday was a wrench. I was sure he’d be OK – he has the carers, for all their lackadaisicalness, and Simon was going to look in – but the rest of the time he would be on his own and increasingly I fear for his safety.

Also – it’s a long day, as he once told me so poignantly when we talked about his drinking. When your world has shrunk so small and you can do so little for yourself, what else are you going to do to help the hours pass?

We’ve been over this so many times. He can’t live with us because we haven’t got the space or anything like the possibility of adaptations; we’ve got too many stairs and steps in this crazy ramshackle Bohemian house. He wanted to be independent, anyway. But that was before the illness got so much worse, and now independence is more of a vague concept than a practical reality.  At least he’s in a place he calls his own, with no one else changing the channel on the TV or telling him what time to go to bed.

And I need my own life. Juggling like this practically kills me sometimes and I forget how much effort it takes just to run both of our lives, after a fashion. If I don’t get away now and then – to walk, to swim, a little trip to see friends or just be at home with my family, then my batteries get too run down to be 100% there for Nick.

But it’s hard to leave him. I just don’t like leaving him on his own, so vulnerable.

Just walking to the loo and back is getting so much harder for him, his odd unrhythmic shuffling gait so much more jerky and unsteady. He comes back with a damp patch all down one leg and I know there’ll be a puddle on the floor. Unlike the song, his aim is not at all true. Really need to call the continence people again to ask for advice – I’ve been told that they can supply a kind of padded jockey short and I did flag this up a couple of months ago but no-one has been back to us yet. It’s on the to-do list for today. Likewise calling our old friends the council repairs team about the bathroom radiator. Nick leans on it for support whenever he staggers to the loo, so It’s coming off the wall again.

How to put all this in the PiP application form, which asks for as much information from as many providers as possible? As usual, I’ll also send a bunch of HDA information leaflets explaining the complexities and horrors of the illness. So many of these that it won’t all fit in one leaflet and there are several ones covering just some of the symptoms and issues involved. But even these don’t address the ongoing day-to-day crises and concerns.

Nick doesn’t really understand what’s happening when I’m sitting at his table, cursing under my breath as I fill out forms like this or wrestle with his online banking. His DLA payment is still coming in but has suddenly moved to a week later than it had always been, so he is out of pocket and I’ll have to take some money out of his savings to cover this week’s standing orders. 

I tell him it’s fine to listen to the radio or look at the paper as usual but since I’m here he wants to have his chair moved so he can see me, even if he can’t quite process what I’m doing, and he sits uncomfortably, getting twitchier as he knows something is happening that he can’t quite grasp.  

I explain again about the PiP but his short term memory can’t hold on to the what’s and why’s, and I have to play down any mention of anything changing as that makes him too anxious. He twitches and keeps eyeing me nervously as I sit with the laptop at his padded table. It’s not exactly quality time in its ideal sense.

However, at least when I’m doing all these tiresome tasks we are at least in the room together and he knows I’m here for love. Apart from filing this wretched form in and surreptitiously googling incontinence shorts, I’m not sure what else I can offer.

To my Mum on Mothering Sunday

Mothers’ Day will always be poignant when your mother is no longer around, but especially for those of us who lost our mothers early. I was still a teenager when Ma started behaving oddly, and the typical irritation and separation of a hormonal girl towards her mum was only exacerbated by her embarrassing twitches, her OCD obsessions about the smallest things and her terrifying tantrums.

I always loved her, but it was Dad that I turned to for support because Ma was too unreliable, and needed so much support herself. I wish I had been able to give her more, but I was young and immature and didn’t know how.

Now that they’re both gone, it’s Dad that I miss every day but it’s mum I wish I could go back in time to meet. To show her that I’ve turned out pretty much OK, that I met a man in many ways like Dad whom she would have loved at first sight, and that she has three beautiful grandchildren. I can’t put her essence into words but as life has gone on without her I carry it with me and it gets stronger all the time.

I’m glad she can’t see what is happening to Nick. Her little boy, her darling.

I don’t know how much she realised that one of us would inherit the HD gene from her, we never talked about it because we were all too busy coping with the day to day.

Dad knew, and tried to protect us all from the full horror of it. He wanted Ma to have the best life possible and for me and Nick to grow up with a normal person’s hopes and dreams, not under the lengthening shadow of an early death sentence. It kind of worked, but if you have witnessed HD in the family you can’t ever live an entirely normal life, always waiting for that toss of the coin.

Now it’s me wanting to protect my niece and nephew from the full knowledge of what could be to come - with medical science making new leaps all the time, I only say “could” because the prospect of diverting the illness in their lifetime is very real and we have to lay all our hopes on that.

I want them to have fabulous lives and not worry about HD, even as they see their dad gradually deteriorate and lose the power to talk properly or hold his head up without nodding. I want them to make him, and themselves, proud, and to look forwards to a bright future without worrying about a distant cloud on the horizon that might never break.

So it’s a strange set of feelings as we celebrate Mothering Sunday.

If anything Nick is ten times worse than I ever remember Ma being, apart from the tantrums - he somehow escaped those. But he can't put a spoon in his mouth or eat an apple or walk more than a few shaky steps, and I am glad she isn’t here to see that. I hope though that she would see we have stuck together, that we love each other and our families and that I will go on caring for Nick throughout his illness and trying to raise awareness about HD.

I hope she would be proud of us both, and think that along with a rogue chromosome in the DNA she made two fairly decent human beings. You’re in my thoughts today, Ma and this blog is for you.  

Only Connect

Yesterday was a bit different to my usual Wednesday. I was invited to Westminster to take part in a roundtable discussion with Carers UK, organizational leads from NHS and local government, and Caroline Dinenage the Minister for Social Care.

(Yes, her dad is Fred Dinenage from “How,” for those of us oldies who had a misspent youth gathering together all the bits to assemble a DIY steam engine and then not actually making it but leaving the components lying around on the floor to annoy their families for weeks. Him.)

An interesting day to be entering the belly of the beast of the House of Commons, right on the day when the third disastrous defeat for the PM’s Brexit deal is possibly the one that will bring the government down…such turbulent times, who knows what next? But it was really exciting to come out of our meeting and hear the division bell go for the 7pm vote.

But we were there to talk about social care strategy and how carers can be better supported and connected – to services, to information and technology, to their own communities both geographical and social. This is the theme of the next Carers’ Week in June and yesterday was a launch event for that as well as pressing the government to release the long awaited Green Paper on the future of social care.

(“It’s ready…” So why are we waiting? Polite question. Just asking for a friend.)

I was there to represent carer experience by saying something about what it is like to do this job in 2019. What takes us forwards? What obstacles do we meet that could be better addressed by the state and statutory organisations? What would we like to ask for if we were given three wishes?

I’d been asked to tell my story and how I became a carer and what challenges I faced on a daily basis. To me it’s old hat now and although I do sometimes moan a bit about what has happened to my life, mostly it’s just become normal. I look after Nick – end of story. But it is quite a story when you add it all up and say it out loud, and I don’t think everyone in the group was quite prepared for this. 

It made me realise how much we normalise behaviour and a way of life that other people might be really shocked at.

So I was the only carer and “civilian” in the room and it was a bit like being Exhibit A, and blimey quite a pressure to try to represent how it is for carers in general across the UK. I hope I did a decent job.

What really struck me was how little contact many of the organisational heads seemed to have had with people like me, I mean to have had the experience I’d been talking about and be sitting in the same room with them as an equal participant discussing ideas for change.

Politicians and charity bosses meet people all the time but usually as a constituent or someone who needs something, not as an equal player. Because mostly we’re either statistics, or just an invisible “they”.

Like the consultant airily signing off a prescription without wanting to look at the effects, it’s all very well to discuss strategy with each other or even go out in the field to meet the people you’re making strategy about  (- the “service users” and you all know how much I hate that expression) but unless you bring us directly in to those discussions, there’s always going to be a missed beat.

It made me think how much more I want to do – it’s a world I once knew very well, working in community development running focus groups and also (unbelievably, in a parallel universe) writing strategy reports for the DWP. It’s very easy to get stuck in your bubble. To believe in change and want to do all the right things to help people but in the end, you write the report and sign it off and collect your nice pay slip and don’t really look back.  

There were some good people in the room though and it gave me hope.

And my three wishes? Just off the top of my head, mine – (apart from an instant and reversible cure for Huntington’s) would be:

1)    More money, of course, to recognise carers for the huge contribution that they make and properly remunerate that in line with the living wage.

2)    A commitment to joined up practice across the sectors. As everyone at the meeting said, how is it that we can turn the central heating up and down from a distance with a swipe of your phone, or that Tesco knows what your brother in law bought last Friday, yet two departments in the same local authority still don’t record and share information in a way that would make it easier for someone to access their support? Surely the technology exists for some kind of across-the-board Carers’ Passport (and no, not just to get 10% off the price of a coffee) a kind of one stop shop for carers where their authorisation is automatically logged and checked so they can gain access to repairs / medical appointments / social housing support / benefits advice on behalf of the vulnerable person they care for, without having to prove who they are and what the issue is, every single time. Too much to ask for? But - oh, what a massive difference that would make.

3)    Include us! In policy making, in feeding back, in all decisions that are going to affect us. And include us as crucial members of a multi-disciplinary team, because after all we are the experts, the people who see what‘s going on with the cared-for person up close, day in day out.

Not too much to ask for, is it? 

Choice

Choice – it’s one of the biggest words you’ll hear bandied about when you’re caring for someone.

The big rule of person-centred care is that you respect the rights of each individual and as far as you can, support them to live as they would wish. As long as they have mental capacity, you must always give them a choice about how they want to do things, what they want to wear and what they’d like to eat.

I was thinking the other day how nice Nick looks lately, almost back to his old self if you didn’t look too closely. We bought him a lot of new clothes for Christmas and his birthday, none of them chosen by him but all by us thinking what he might like, and he looks fantastic. 

He’d always taken a lot of pride in his dress but in the last year of living on his own he’d been buying things that made him look ten years older. Shapeless jackets and baggy old-feller's trousers and slip on shoes.

By the time he came to Sheffield and was still more or less dressing himself in the mornings, he had really started looking like a funny old bloke, wearing an odd assortment of garments that didn’t go together at all. That was his choice, though. Now we’ve overridden it by buying his clothes ourselves, even though it’s him who decides in the morning which of them he wants to wear. Though the carers override his choice too when he wants the same socks four days running, because HD dramatically affects your sense of personal hygiene.  

Then there’s the wine, the chocolate and now the CBD. Nick became obsessed with the latter and wants it all the time. I’ve had to keep explaining that he can’t just binge on it as there was only a limited amount, when it’s gone it’s gone, and six lots at once really won’t make him feel better than one.

I’m rationing everything, including Mars Bars (which he’s not really meant to have in the first place because they’re a dietician’s nightmare. But he longs for them so), because otherwise he doesn’t know when to stop and will neck it all at once. I’ve tried giving him the benefit of the doubt, but rationing is the result of bitter experience and seems to be the only way to go. I might not exactly know best, but in his best interests I've got a pretty good idea. 

So if the person has capacity but limited understanding of the consequences and wants to do something that is going to be bad for them, then giving them a choice is tricky.

It still doesn’t sit quite right with me, but I’ve become the publican who’s seen it all, saying, “ That's all for tonight. You’ve had enough, sir”

Drugs?

“You’ve been in the wars!”

An acquaintance in the changing room points to my bruises. They’re yellowing now but still very visible against my wet skin as we step out of the showers.

I just laugh it off – you should have seen the other guy! – but the truth is, this is normal. Pushing Nick’s tank of a wheelchair, getting it in and out of the car, or even just folding it up to live in the hall of his small flat, is very hard to do without some injury to self. 

Helping him get his shirt off, or put his shoes on, or move his chair closer to the table all have their risks; even when I’m anticipating it and try to duck, the force of his involuntary whacks can knock me sideways. Or the unexpected head butt as he suddenly lurches backwards, or the shin splintering kick as I stand by him in the cramped crowded lift at the hospital, me as the buffer taking one for the team instead of some poor stranger.

It’s hard to explain this to someone who doesn’t know Nick, or Huntington’s. And not everyone with Huntington’s has quite this degree of violent movement. But it is one of those things you get used to, and that probably seem quite weird to anyone outside this caring lark. Other carers have bad backs from constant lifting, washing, changing of sheets, I know. Not to mention all the invisible and psychological stresses of the role – things even the brightest changing room light would not reveal.

But as I look down at my arms and legs, I realise that the bruises are old, they’re not fresh. I think it might be some time since Nick has really lashed out, and we haven’t been out much because he’s been so ga-ga since taking these new tablets and wants to sleep a lot more than usual.

So they’re working. Well, we knew that, but perhaps they’re working in a good way. They’re making him very sleepy, even with the half dose, but if they are calming his movements then that’s surely a good thing. And to my amazement, when I came to do the online shop this week I realised that there was still a cupboard full of wine and no need to order any more, so he is drinking a great deal less.

I’m still slightly uneasy though. Nick is now taking quite a potent cocktail of medication.

The drugs used to treat chorea are typically anti-psychotics. Sometimes at high doses these can mimic just the effects you want to avoid – severe agitation, risk of falling, choking - and as HD progresses it’s not always easy to tell what is the side effect and what is the actual illness. I can’t tell exactly what effect the new tablet and the newly reduced dosage are having, all I know is that things are subtly different and his sleeping and activity pattern has changed. Maybe all we can hope for is damage limitation? It’s hard to know. *

This afternoon we are going to see the specialist again for an emergency review, and we’ll see what he says. 

Meanwhile I was wondering what to title this post and all I could think of was the Charlie Sheen character at the police station in "Ferris Bueller's Day Off". 

"Drugs?"  

And isn't that as good a way to start the day as any?  

*Thanks to the wonderful online HD community for this link about medications:

Love Actually

It’s Valentine’s Day tomorrow. For several weeks I’ve been walking past shop windows throbbing with red hearts and roses and the penny has only just dropped that it’s that time of year again. So we’ll be celebrating love, and an excuse to eat your own bodyweight in chocolate. Nick will be doing his best with that last bit anyway.

His build-up plan has been going very well and he’s put on 6lbs.

“Let them eat cake”, has been his mantra, and the sweet tooth that he never even had until the last two or three years has gone rogue – to the point that I’m now hiding and rationing sweet things the way I do his wine, doling them out a little at a time. Otherwise he just doesn’t know when to stop.

The other day his supermarket delivery arrived at lunchtime while I was at work and I came in later that evening to put everything away. I couldn’t understand where the chocolate had gone though, as I knew I’d ordered two six-packs of chocolate bars and they were nowhere to be seen. There were just two Kit Kats in his box, that was all. Eventually I realised that he’d already eaten the rest.

Worse than that – a friend who knows about these things had made him some CBD laced chocolates, with the express advice that he’d just have one a day. Nick, his sweet tooth, and a box of chocs on the table in front of him. What could possibly go wrong there? 

I’ll draw a veil. By the time I got there he had eaten half the box and as the music papers used to say about famous stoners, was extremely “relaxed”.

I managed to rescue the rest of the box and hide those too, to be released one by one on special occasions.

Ah, let him have his fun, you might say, but the trouble is, there are some potent pharmaceuticals already in the mix.

Nick started the Tetrabenzine about a month ago, a small dose at first then gradually stepping up to a larger one. It’s clearly having an effect.

Since he’s been taking the full dose of 25mg three times a day, he’s been noticeably spaced out and slow, mouth hanging open and dribbling, speech very slurred and eyes not quite focusing.

Last week there were three days when the carers could not wake him up and he refused food at lunch and tea time, just wanting to sleep all day like a stone.

The Tetrabenzine was supposed to calm his movements but in addition to all the other medications (as well as the daily box of wine) it's been utterly knocking him out.

The third time this happened, I’d been away for the day (naturally) and the carers had been in three times and he’d refused three times to get up or eat, though they’d given him the tablets and then he’d gone back to sleep.

I was scared he wasn’t going to wake up at all and rushed round to the flat, afraid of what I might find. It was 9pm. He was sitting at his table, scoffing cake. Milk all over the kitchen floor where he’d tried to make himself a milkshake, absolutely ravenous because he hadn’t eaten anything all day or much the day before. But still sleepy, and I called the out of hours doctor and asked if we could cut the dose to a half tablet and after consultation with Nick’s GP and pharmacist the next morning, this was agreed.

Rang the care agency and explained the situation. The manager said he’d immediately let all the carers know that it was back to half a tablet, and I printed out another of my little notices and taped it to the kitchen worktop next to the Tetrabenzine bottle and the pill cutter. Put a sticker with a fluorescent highlighter in the MAR chart saying that from until further notice we’re back to a half dose. Job done?

No, of course not.

Nick has continued to be very sleepy and several times I have come to see him around 1 or 2 in the afternoon when the carers have not yet arrived to do his lunch, and found him flat out in bed with just his socks poking out. Really hard to wake. A pot of strong coffee has helped bring him round and then he’s had his lunch and gone about his day as usual though still on noticeable slow-mo.

I had wondered if all the carers were on message about the reduced dosage – just a feeling, as the pill cutter kept going back into the drawer where the next week’s meds are kept, and Nick has been so zonked, but put the thought out of my mind.

Until yesterday, when I was with Nick and watched G, the carer who comes twice a day, offer Nick the plastic pill dispenser with three whole tablets on it. No half doses but the whole thing. It had been five days since the dose had changed, and G had been coming in to do meds twice a day. Oh God.

I had to not scream, but take him back into the kitchen and show him the printed note with the clear instructions, the MAR sheet with the clear instructions highlighted in yellow, the one he had been signing for the last five days but clearly not reading, and and explain once again that Nick was now only having half a tablet. 

The social worker was with us and saw this happen. She has phoned the contracts team at the council and I have phoned the care agency to ask that all carers read and follow the instructions because dosage is extremely serious.

I’ve got to trust them, but it is very scary. Nick is oblivious. He just wants to sleep, watch Netflix, and to have his cake and eat it.

Anyway, tomorrow is Valentine’s Day and it’s a Thursday. Thursday is Boys’ Night with Simon, the night they always go out. Usually to the pictures or to an open mic night at a local pub. Nick looks forward to it all week.

Carers don’t come on a Thursday night and Simon organises dinner, gets Nick undressed and gives him his tablets.

We are not a going-out-to-a nice restaurant type of couple at the best of times (more’s the pity, but we do have our other moments) but we usually mark the occasion somehow. But we can’t leave Nick on his own. So this Valentines we’re going out on a date night with dinner and a movie – me, Simon and bro. It’s not your big padded soppy card kind of love, perhaps, but it’s real and it’s how we are. It’s not your standard issue romantic evening perhaps, but I’m really looking forward to it.