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.

A Small Triumph

It has taken 22 months, six weeks’ worth (at a conservative estimate) of my dedicated admin time, not counting actual meetings or phone calls, possibly two hundred outgoing phone calls, approximately ten hours of Vivaldi’s Four Seasons while I wait on hold, several trees’ worth of paperwork, two sets of original documents lost in the post, three shades greyer of hair, continual and soul gnawing financial juggling every single week, one sense of humour missing presumed dead, and a whole new understanding of the term “Kafka-esque.”

But at long, long last, Nick has had his ESA benefits reinstated. Six brown envelopes arrived in the post yesterday explaining different aspects of the decision. I couldn’t understand any of it and had to ring up again today, and even the DWP advisor admitted that the wording was unclear.

I’d had a number of telephone conversations with a different advisor earlier this week, who told me that he had literally spent two entire days trying to unravel the wild goose trail of Nick’s state benefit provision - suspended, reinstated then suspended again for no apparent reason, since he had left County Durham to live in Sheffield.

He had the kind of croaky Lancashire accent that made him sound more like a favourite DJ for 6 Music than a civil servant so I was inclined to trust him. And Nick has since had a nice arrears payment into his account (even though there is no mention of this in the six letters from the DWP, or the seventh one that came today saying that he needed to send XYZ information by tomorrow, or else) so I was slightly concerned that it might be a blip and would suddenly disappear again. But after the follow up conversation with the girl on the phone today, it does seem to be a genuine rebate of sums owed and the new weekly payment has gone in too. At last. At long blinking last.

Just one thing - Mr 6 Music suggested that if I were to give up claiming Carers' Allowance, Nick would get more money because he would then be eligible for a Severe Disability premium. He can't get this while I am getting the Carers' Allowance. If I stopped, we would both be better off. Can that be right? And if so, how have I not understood this before and why has no-one ever told me? 

I have never been happy about the limitations of Carers' Allowance, which seem incredibly unfair and a deliberate poverty trap for people who are working their butts off and saving the state so many billions. I could stop tomorrow - but I have structured my current working pattern around the limited amount of hours I can work alongside the small weekly allowance, and I'm nervous. 

Can I honestly expect to return to better paid work at my age, having lost so much confidence and lost sight of my previous skills? 

If I were doing project management in the real world on the scale I've been doing for Nick, I'd be earning a six figure salary and I would have status. And staff! But it doesn't translate quite like that into the real world, does it? 

And let's face it, it's not as if I'm going to suddenly stop being a carer. I'll still be spending the same amount of time tending to bro, so would there even be time for more work? 

I need some advice. 

Nevertheless, I have a glimpse of something different, a brightness on the horizon, just being aware that perhaps another way has opened up that wasn't visible before.  

In the meantime, I am going to put all the  fluorescent post-it-note-festooned paperwork from the last 22 months into a file and throw it in the cupboard. Then Nick and I are going out for a slap-up lunch. 

Sunshine and Rain (and a touch of snow)

It’s been a full-on week, and one that I really thought might break me. When you spend the majority of the day, every day, dealing with someone else’s business and never seem to get to the end of it and no time even to check in with yourself, it’s just exhausting. Your brain starts to shut down, dreams forgotten and plans on hold. You feel you have no life. And it’s true. When things hit like this all at once, you have no life – you just have to shut down your ego, you are there to serve.

Especially on weeks like these. As well as the TV and the NHS penalty notice, there has also been a problem with Nick’s benefit payment failing to arrive in his bank account this week, and a warning from his utilities provider that his gas consumption is unprecedently high and they are going to suspend his account. Oh, and his CEA card is about to expire and they need a set of evidence. Lots of emails, lots of phone calls. Nick sits flailing while I try to explain to him what I'm doing.

He has been to the dentist and he's had a haircut. And we’ve seen the neurological specialist too. 
Who was concerned about the severity of Nick’s chorea; he’s on pretty much the highest doses he can be of the Sulpiride and Olanzapine and he’s still unable to keep still, head nodding, arms jerking and legs kicking out like a mule. The specialist decided to try a different medication and has prescribed Tetrabenzine – not instead of, but in addition to all the other tablets he’s taking.

Naturally it’s not just a simple dosage but a trial run of half a tablet a day for two weeks and then gradually scaling up to a larger dose. Nick gets his current meds in a blister pack, compartmentalised for morning, noon and evening meds for each day of the week. This will be separate, administered three times a day by Nick’s carers alongside the tablets in the pack.

I’ve printed out instructions for the carers very clearly and just have to hold my nerve and pray that they can cope with this new development because some of them still can’t seem to read a label on a dish saying “Please give Nick this pasta for lunch”.

There’s a slight risk that the Tetrabenzine will cause a low mood, and actually this is already a big risk with Huntington’s as inevitably it goes hand in hand with a low mood. To put it mildly.

Nick has been taking anti-depressants for the last ten years, since before he was diagnosed, but since moving to Sheffield he has consistently said that he feels happy and loved, and rarely feels down – which is terribly moving to hear, thinking how much his health has deteriorated in that time and how many reasons he could have to feel bad. So we think it’s worth a whirl.

“How will we know if it is affecting his mood?” I asked.

“Oh, you’ll know all right” was the answer. So we’ll watch and wait.

It’s all been an uphill struggle though, exacerbated by the fact that Nick has not had his TV or radio all week and has been sitting, slumped, staring at the wall when we’re not there to chat or take him out. I’ve spent hours on the phone trying to sort out the various technical, financial and bureacratic issues, on hold listening to Vivaldi, Beethoven and easy listening jazz until my ears are ringing. 
On Wednesday I managed to get the TV to come on but could only get one channel  - of all things, Parliament Live. It was the night of the big Brexit vote of confidence / no confidence in the Prime Minister. She'd scraped through and most people had left the building, so there wasn’t much to see. The red seats were empty, just four or five stragglers slumped on the benches in a similar attitude of apathetic despair to Nick, or maybe just dozing. 

“Oh blimey, you won’t want to watch this, Nick!”

“Yes” he said, “I do!”

So for the last three days he’s been sitting watching the Parliament channel instead of his usual diet of Netflix, radio 6 music and the Archers, and it seems to have kept him – well, if not entertained exactly, then occupied. He probably knows more about Brexit now than any living person, except that his short term memory is so bad that he won’t remember any of it.

It's been such a bad week in terms of Nick's movement deterioration, speech slurring, spillages and general loss of understanding that despite last week's lovely birthday, for the first time I have really wondered how much longer he can live on his own. 

But. As the week ends, I decided to have one more go at the television, spent an hour on the help line and, with the help of two patient and skilled virtual technicians, have finally and fixed the software glitch and paired yet another new remote control too. Yessss!! What a triumph. 

I’ve spoken to a proper human being at the DWP who says that Nick’s full benefits will be reinstated next week with a rebate going back to November, and although the NHS business service are intransigent about charging for a prescription that we still can’t trace, they say we don’t have to pay the fine and his exemption certificate is on its way and will cover any future problems.

And this - just when I was feeling most desperate, a dear friend got in touch out of the blue and offered to help with the costs of a new TV. I can’t begin to say how kind that was. 
Not just the thought of a practical solution. It felt like a miracle just to have someone reach out at the point when I felt most alone and unable to put one foot in front of the other or see straight.

We’ll probably struggle on with this one now it’s working again, but I’m feeling braver all the time about asking for help and accepting it.

I’m beginning to think that no-one could do all this without going half crazy, there’s nothing to be ashamed of if sometimes I can’t cope, and that mostly I am doing a good job.

Meanwhile Nick is in Netflix heaven, it’s the weekend, and if just for a short hiatus, I can breathe easier again.