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? 

Following in Dad's footsteps

It’s Carers’ Week and I’ve been thinking about our dad, who looked after our mum as her illness got worse, and never had a tenth of the support I have had with Nick.

I‘m not sure that he would have liked to think of himself as “a carer” but that’s exactly what he was, and one who set a gold standard for the role.

This is a little excerpt from my book about Huntington’s and our family, thinking of all the things Dad did for our mum. Realising how much I’m following in his footsteps – just as many generations of HD families have done before us.

"I look back and wish I could talk to Dad about all this. I wish that with the wisdom and experience I have now, I could take the load off him a little - or a lot. Now that I have become my brother’s carer, I understand so much more about the duties of love.

We would have very different experiences of the caring role: so different. Ma lived at home with Dad and never had carers the way Nick does; all the bathing and dressing and bed-making and bum-wiping was down to him. The shopping and the cooking, the careful preparation of fork-mashable foods and the patient spoon-feeding.

The washing of clothes and body and clipping torn fingernails and the constant bloody bed-making. I do all these things too, but with help. He did all that on his own, day in, day out, while still somehow going to work. There was no slack, no respite.

It seems unbelievable now that Nick and I didn’t force him to get away, go away for the weekend while we held the fort, but none of us knew how to break up the terrible dance he and Ma were locked in to together, like one of those Depression era marathons – dependent on each other and almost dead on their feet but unable to let go. We did try but Ma’s panic at the thought of losing sight of him was so pitiful and he just couldn’t bring himself to do it.

So he was on his own. While I have a partner who can take over some of the legwork on those evenings when I’m just too shattered to move, he rarely had any help. No sympathetic ear to sound off to last thing at night, no hope of a gear change, no-one to give him a hug and tell him it would all be fine. No-one really who could possibly understand, not even his own family. I can’t begin to imagine how lonely that must have been.

Then again, he had worked like a Trojan all his life and had become a senior partner at his practice with a good salary and pension ahead. He and Ma could have a comfortable life and didn’t need to worry about money too much, while I wake up fretting at 5am because Nick’s DLA has not come through and the bills are mounting up.

Dad didn’t have to wring his hands over all the daily peccadilloes of council-outsourced care workers not really invested in the role, or navigate the stormy seas of the benefits system. He didn’t have to spend hours on hold on the phone waiting to talk to someone about PIP, or try to make sense of financial chaos from a time when Ma had lived independently, or try to retrieve her lost password for paperless billing from a broadband company still taking money out of an account she’d forgotten to cancel. He didn’t have to juggle child maintenance payments and mortgage for the life she had had before, now there wasn’t enough money coming in to cover them. He didn’t have to try to co-ordinate two households (badly) like me, and he didn’t have to buy and then hide a week’s worth of wine and dole out an agreed ration each day to an alcoholic. And all that is lonely work too.

The “which tablets for which hour of the day” was perhaps not so complicated for Dad. Nick was already taking medications for other health issues so he positively rattles with all the different things he is taking, while for Mum it was just heavy-duty tranquilisers. The main treatment for Huntington’s Disease at the time seemed to be Valium and Diazepam, so by the late 1980s she was spending a lot of her time in bed.

Medical appointments? I think for Ma these were gentler times where the local GP would have known you for years and would come in with your next consignment of pills on the way home from morning surgery, and sit on the end of your bed for a chat.

She didn’t half thump around but she was a petite, 8 stone woman, she didn’t have anything like Nick’s weight and super-strength, and although she couldn’t walk very well or far, she never needed a wheelchair. They visited me in London only a few months before she died and she somehow managed to stagger up the rickety iron stairway of an East London warehouse to see my artists’ studio.

The solid, high-backed orthopaedic chair we bought her soon became stained and scuffed but lasted for years after her death; I had it re-covered and it made a great nursing and reading chair when my son was tiny. It lived happily in our bedroom for a long time, then, when Nick began to need some more comfortable seating, I took it up to him in the north east. It lasted six weeks.

I wish I could talk with Dad and tell him I understand, and how terribly sorry I am for not doing more to help at the time. We could help a bit, but he wouldn't ever let us step into his shoes; he knew that either Nick or I were likely to inherit the same condition and he wanted to protect us from seeing too far into the future. 

There’s no real comparison between our lives except both of us trying to live with the fall-out of this horrible illness, seeing someone we love gradually lose everything. And knowingly making the sacrifice to try to ease things for that person as much as we can, or could. Whatever it takes.

It used to mystify dad that people would say, “Oh you’re so good to Mary, looking after her like this”, as if there was any question of doing otherwise. What else was he going to do – put her in a care home and visit at weekends? Though admittedly it could have been an option.

I have the same thing with Nick. People tell me I’m wonderful for doing so much for my brother for having such an active role in his care, but honestly I don’t see any alternative. If you’re reading this, you probably know that social care is in crisis and frankly, there are days that I do consider residential care except that there simply isn’t any.

Like dad, I am not always doing it because I want to, and certainly not out of any sense of “duty”. Well, it depends on your definition of duty. Obligation, no - loyalty and commitment, yes.

He’s my brother, my blood, and whether or not he would do the same for me, this is how it is.

It’s not a question of being wonderful or good or brave, it’s just doing what you do for someone you love. Even when it doesn’t feel like love as we know it, when you feel that you could actually strangle the person, that loyalty and commitment carry you through to keep going. So don’t tell me that you wouldn’t do the same, because you just don’t know what you are going to do until it happens to you."

Excerpt, “Days of Wine and No Roses”