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”