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? 

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:

What's broken cannot be unbroken, but I like to think a heart can mend

Today I was walking past a local cafe feeling happy and light of heart. I saw someone I knew sitting by the window; we nodded to each other and smiled, and automatically I smiled too at the person he was with, a proper, open-hearted glad to be alive and good to know you smile, and she did the same - except that it was someone who'd fallen out with me some time ago and we have not spoken to each other since. We both smiled at each other before we realised who it was. In that instant, though, it felt like things were healed. We might not ever be friends, but something just mended in a glance, like some invisible clicking back into place.

Nick's fifth remote control has broken and we are waiting for a replacement to be sent out. It's been a week now. The TV is now out of warranty but we're getting the remote free as a goodwill gesture so I can't make too much of a fuss, but until it arrives he can only watch one channel on his television with an annoying error signal flashing on and off which would do my head in after two seconds but he seems to be able to ignore. I curse the day we bought the bloody smart TV, it's been nothing but trouble, but it's also a lifeline for him.
I did buy a universal remote when we first realised that the TV remote was so vulnerable to being chucked around and bashed, but we've never been able to match it to the television. The OT has been trying to install a bionic arm that attaches to Nick's table to grip the remote more securely, and she brought along her technical team to help, and they couldn't get it to match so I know it's not just me - it's a combination of annoying so-called smart TV and the Nick factor.

Meanwhile, the big comfortable black chair that Nick sits in all day has broken. I got a text from him yesterday to say that a wheel had fallen off - and it surely has. The chair is capsized in the corner like some poor broken creature. The company who fitted it say they can't do any repairs until they get a referral from the NHS, as although they supplied the chair, it was the NHS physio who made the purchase and therefore it's up to her to instigate a repair order. What, even in dire emergency? But they're adamant that they need the physio's sign off but she won't be at work again until the end of next week and emergency or no, there seems to be no Plan B.
Thankfully we still have the old orthopaedic chair I got for peanuts on the Abbeydale Road, and Nick can sit in it reasonably comfortably, but not for too long before his body starts rebelling. He is playing musical chairs with that and the armchair supplied by the council, which has always been too low for him to easily get out of.
Two of his absolute basics have disintegrated, and I feel so helpless for him. It's like some kind of horrible party game where all his favourite things are taken away, one by one. Still, we keep cheerful. He's really looking forward to Christmas and I am planning some treats for him. Tonight we're going to hear a friend's choir, and we'll have some Christmas lunches. If you're reading this and you're within shouting distance, get in touch, we'll be here and we're up for some festive jollies.

But thinking back to seeing the woman I had fallen out with; even though Nick's special things are broken and it's frustrating and sad for him, he's in good spirits. The breakages are constant; it's one of the features of Huntington's that you might not hear so much about but for us it's non stop, and it's hard to anticipate what's going to go next, or the difficulty level of getting it replaced or repaired.
If you or I broke our glasses or the car wouldn't start, it would be annoying and inconvenient but we'd manage; for Nick, he has so few resources that if his TV and hearing aids and radio and chair stop working and we're not there, then he's effectively in solitary confinement.  It's amazing then that he is so phlegmatic about it all.
In his pyramid of human needs, physical comfort and company from the TV are so important, but the really essential things are his human relationships and the cuddles he gets with his cat. These keep him going. And having such a short term memory that he can't remember enough to bear a grudge, so he stays open hearted like a child. I think as the silly season races up ahead, that it's probably a really good way to be.

A Colouring Book for Carers (Geography saved my life)

Geography kind of saved my life last year. Once upon a time it might have been a DJ I guess, but my son is the night clubber of the house these days.

In the first few terrifying weeks of my brother arriving in Sheffield and me realising just how ill he was and how completely reliant on me, I walked around in a state of grief and shock.

One day, absolutely banjaxed by everything and wondering how the hell to go on, I noticed that the local branch of MIND was just opposite Nick’s flat, and I just went in. 

I knew there would be massive waiting lists for counselling and didn’t think I stood a chance, but I just needed to talk to somebody. It was just pure luck that it was across the road from Nick, literally within shouting distance of his front room. 

To my amazement there was a free counselling programme available for carers in their fifties and I could put my name down for it and be seen fairly soon, and in the meantime let’s have a chat and take some details…

Even doing that was helpful, being able to say out loud what was happening and feeling not quite so alone. It’s one of the biggest things for new carers, that utter clobbering of overwhelming emotions  - guilt, fear, rage, exhaustion, sorrow and a love that you don’t know what to do with. It’s no wonder that for most of us in that situation, mental health takes a steep decline. You spend so much time and emotional energy looking after this vulnerable person that it can suck out all your juices until you genuinely feel there is no longer any you at all.

So, cut to the early autumn and I started seeing Olga who I quickly realised was very, very skilful in her work and more to the point, really got me. I spent the first few weeks just crying and ranting but gradually somehow she helped me to see a glimmer of light and hope in the situation. She helped me come back to my own life in between the caring duties, and even though it is a constant juggle, identify things that I love to do and that recharge my batteries. All this helps me to be stronger and more able to care for my brother. 

By the time we finished the 24 sessions (lucky me) I felt like a different person – still clobbered daily by the unexpected and the ongoing grief of this living bereavement, but capable of happiness too, remembering who I am and what I want and just feeling ten times stronger.

I wanted to be an artist – I always have been one, but never really took myself very seriously and it always felt like the life that might have been. But Nick’s situation changed that – seeing how precious is the time we have and what are we waiting for? Why not just follow that crazy dream?

I honestly don’t know how I’ve made time for it, but somehow I have managed to start making art again and this month I’ve got a small exhibition of my illustrations and astonishingly, it feels completely natural and normal.

And I have made A Colouring Book for Carers and would love to share it with you.

A Colouring Book for Carers started life as a leaving present for Olga, but I realised that it might be useful for other people and that I wanted to share it.

I had started drawing some doodles while I waited on the phone during the seemingly endless admin involved in caring for another person, and thought it would be fun to do a “colour yourself calm” style book specifically for carers, with situations we would all recognise. 

It has ended up as a cross between a colouring book and an illustrated self-help guide and I could have made it three times the size, but small is beautiful, hey?

If you would like a copy, it’s available from Airy Fairy in Sheffield while my exhibition is on (throughout November) and soon in other outlets, or contact me for mail order.

Seeing with new eyes

I have had a holiday.

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

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

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

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

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

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

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

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

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

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

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

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

I feel rested and relieved, and very very lucky.