Little Big Fears

9am I’ve had to call in a plumber to look at Nick’s toilet, which is tilting at a strange angle with the cistern coming away from the wall. We’ve been here before…at the previous flat, where twice Nick pulled the washbasin off the wall and then dislodged the toilet too in the space of a few weeks.

I recognise the plumber, he's been here before when the wet room was first installed. He thinks it's a simple job but I offer him a hot drink and we have a joke about how he can stomach swigging tea while poking around in somebody's soil pipe.

An hour later, he’s sitting on the floor amidst slabs of dismantled plastic, phoning his gaffer. He can put everything back today and refix it against the wall but it will only be a temporary solution. The whole thing is coming away not just from the wall, but actually parting company from the huge bolts going deep into the floor.  It’s a solid, specialist self-flushing toilet for people with impairments and he installs them all the time but he says he’s never seen anything quite like this.

“It must have taken some force to move them bolts”.

Yeah.

Welcome to our world, I say, standing in the doorway where I notice the handle is also starting to come loose again, the screw heads working their way out like worms after rain.

The plumber has asked his gaffer to call the OT and advises I do too, to make sure she knows this is urgent because it’s only going to hold for a limited time and then the whole thing is going to go. Horrible visions of Nick on the floor, collapsed amongst the ruins of a broken toilet in a pool of piss, or worse.

11.15am The plumber has gone, I’ve left an answering machine message with the OT and I’m drinking coffee with Nick who had slept soundly through all the drilling and clanking. I’ve unearthed some wonderful old photos of us as children and we’re having a giggle at our clothes, woolly balaclavas and cardis knitted by our gran, Nick’s tartan bow-tie (what a thing to do to a child, he was only four) and my gap teeth.

The carers have not yet arrived to give him his shower and breakfast. Yesterday they didn’t turn up at lunchtime at all. Luckily I was around and could nip over and make him a late lunch – 3.30, practically tea – and give him his tablets.

The care agency weren’t sure what had happened. Their timings have been going really off again and I’m worried.

We’re going on holiday in two weeks’ time – me, Simon and Dill, the first holiday we’ve had together in years, an actual, proper holiday - but I don’t know if I can do it. How can I leave him like this? 

His lovely PA has said she’ll look after him and that was really the thing that made me feel able to go for it in the first place, but oh the things that can, and do, go wrong. Today being a fine example.

I'm not being pessimistic. Just, this is how it is. When the carers are late or don’t turn up at all, when another thing suddenly gives under the force of Nick’s super strength, you’ve got to sort it out.

And then the sheer range of minor crises that happen every single day – the lost hearing aids, the hearing loop not working, the fall, the spilled wine that has drowned his phone, the remote control dying, the payment not going through due to insufficient funds, the neighbour banging at the door and swearing at the carers outside – all of these things are just like background music to the daily pattern of Nick’s life. They still have to be dealt with.

It is a big ask for someone else to take on.

It’s giving me the pip

That’s rather an old fashioned expression now isn’t it? It means, to irritate exasperate or annoy.* 

*Look at this wonderful link, which, if it’s new to you, will explain all.

Oh, those people at the DWP knew what they were doing. I bet there were public school boys involved who’d read their PG Wodehouse and were having a little private snigger at the connotations, the nuances of which us plebs wouldn’t ever understand.

Well, I have thoroughly got the pip.

There’s another big stack of its paperwork lying on my desk and it seems so unfair.

We had finally got the letter about transferring Nick’s DLA to PiP and I duly filled in the Work Capability Assessment form, being very clear about the extent of his impairment. Also, names and contact details of all the various professionals involved in his care, and 30 pages of supporting evidence including his CHC assessment done at New Year. My printer had broken so I went to the library to make the copies, and write Nick’s National Insurance number on each side of every page. Just doing that bit and checking it all took over half an hour. Then I went to the Post Office and posted it off.

Job done, I thought.

On Thursday (admittedly a quick turn around) I got a new application form for PiP, this time addressed to me. I couldn’t understand why. It was obviously a different form and generated from the previous one, but why? What part of “diagnosed with Huntington’s Disease in 2010, progressive condition, cannot dress, wash or feed himself, acute dysphasia and cognitive impairment” had not been not quite clear?

The questions were almost identical to the previous form, asking the same things about what can you / can’t you do for yourself.  I felt very anxious about this and why they were asking the same things again, as if to try to catch us out – as if Nick were just pretending to have Huntington’s Disease, you know, just for a laugh and to con a few quid out of the public purse.

The first time Nick applied for DLA, ten years ago when his symptoms were too visible to ignore, when he had been sacked from his job because he kept dropping things and he had been told he was no longer fit to drive, he was turned down.

His Huntington’s advisor in the north east appealed and this time won by a couple of points.

Not because he had been diagnosed with a life limiting progressive illness and was suffering from panic attacks, acute disorientation and stress incontinence, but because he was deaf in one ear and had to wear a hearing aid. Give me strength! He got his DLA, though. And a Blue Badge. 

Back at my desk, May 2019, I kept circling this new lot of paperwork. Eventually the penny dropped that this is Part 2 of the application, the Daily Activities Assessment to establish the extent of Nick’s support needs. It never occurred to me to look this up online, I had just thought that you made the application and then someone would get back to us with a yay or nay. Goodness, how naïve.

The damn thing is sitting on my desk and I will just have to woman up and fill it in. 

Safina, the advice worker at our local Carers’ Centre, gave me a crib sheet of the points system (“Cannot stand and walk unaided more than 20 metres – 12 points”) and it is immediately apparent that Nick will score highly on all counts.

What grieves me though, apart from the exasperation and annoyance of having to spend another chunk of my time going through all this again and gathering the bloody supporting information all over again (yes, they want that too) is that it’s always time I could be spending with Nick, being with him rather than closeted up somewhere I can concentrate doing this for him. He’s oblivious of course, I’ve told him that his benefits are changing and I’m having to apply for the new version of DLA but he doesn’t really retain the information or understand. 

Just have to suck it up and fill the form.  One of my most hated tasks. I’m a right- brain intuitive with "unusual" handwriting. Some people have the neat and orderly form-filling gene, but me, no. It’s a painful chore. And that’s me with two degrees! How must it be for someone not confident with their literacy, struggling with an impairment, trying to do it for themselves?

And then underlying all that is the actual content of the questions. Every single part of it only highlights exactly what Nick cannot do and will never do again. Leave the house unaided. Walk 50 yards. Prepare a simple meal. Make a budgeting decision. I know all these things because I see them every day but seeing it in such quantitative cold hard print makes it very real and only adds to the cruelty of this horrible illness. But there we are. All I can hope for is that he gets the award without too many further hoops to jump, and that someone who reads it breaks out of their Bot mould for a few minutes and learns a little bit about what it really means to be living with Huntington’s.

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”