Carers' Rights are Human Rights

It’s Carers’ Rights Day tomorrow.

In theory carers have rights specific to the role, but it’s very hard for me to begin even to discuss them without sounding totally cynical.

I’m getting this out of my system before resuming a positive attitude - and as I'm always keen to stress, I am one of the lucky ones, a winner in the postcode lottery with access to services and specialist support. But it shouldn't be down to postcodes or being lucky. Carers' rights are human rights, wherever you live. 

We have a right to act on behalf of the person we’re caring for, in their best interests.

We have a right to be acknowledged for our work.

We have a right to be recognised for our contribution to the economy.

We have a right to support from our employers, should we be able to combine employment with our caring role.

But - 

As unpaid carers for people we love, we fall between the cracks of services and state. 
We don’t have the right to claim holiday or sick leave from our caring responsibilities, or the right to any NHS exemptions despite the known effects of caring on health and wellbeing.

We don’t have the right to a living wage or even an allowance in line with Job Seekers’ Allowance (just let’s not even talk about Universal Credit)

We don’t have the right to earn more than £120 a week, should we somehow find time to work alongside our caring role.

We have a right to an assessment “health check” from the local authority, but most local authorities lack the capacity to do this, so it doesn't happen.

We don’t have the right to support services unless we live in the right area. Even then, we don’t have the right for those services to recognise our role or make it easier to access their help.

According to a report by Gov. uk on carers’ experience in 2016,

“What comes through time and time again is that services are fragmented, inconsistent and information not helpfully shared between statutory organisations.”

This report was designed to feed into a Carers’ Strategy, headed then by a pre-Brexit social care minister (it scarcely matters whom, as they seem to change before the ink has dried on the letterhead, yet very little has changed since then to improve the situation for carers.)

We should have the right to be heard when we ask the government for support and solutions in line with social and economic reform, yet they don’t seem to be listening. Caring is still seen as a “choice”.

Yet social care, as we all know, is in increasing crisis and for many of us there is simply no alternative.

I'm frustrated and fed up and angry. Like most other carers I can sound off to anyone who'll listen but find it hard to do much more than that because I'm too involved in the task in hand - yes, the situation badly needs to change but my brother needs me right now and there are only so many hours in a day. 

Thank goodness then for Matt and his campaign to appeal for carers' rights and for a change in the way they are recognised by the state. This affects the whole social care system - unpaid carers are that important to the status quo.

Please, whether you are reading this as a carer or if you know anyone who cares for a relative or friend, please do add your signature to this petition. Help us to appeal for a change. 
There is strength in numbers.

https://petition.parliament.uk/petitions/221220

An Appeal forChange: https://twitter.com/Appeal4Change

How Come You Don’t Call Me Anymore

The thing I find hardest to watch happening to my brother is not the awful chorea - and Nick’s is really severe - not the coughing or the choking for breath or even the falling over. It’s the passivity. He still has strong views about some things, like wanting to watch the rugby on TV, or asking me to buy a particular kind of chocolate that he likes, or being very determined to send his children some birthday money. But mainly he seems content to have life happen to him.

Enviable in a way, maybe, for those of us who struggle constantly with shoulds and oughts and want to’s and what ifs – you could say that Nick has transcended all this and found his Buddha Nature.

It is infuriating beyond telling, though, that communication has ground to a halt. He keeps his mobile with him at all times and one of his tics is that he needs to have his phone and a little black cube clock always at his fingertips so he can reach out and touch them. He probably does this twenty times in the course of an hour – he just doesn’t actually look at the screen.

We have spent hours changing the ring tones, getting the buzzer as loud as possible, reminding him to check his phone every hour (and he knows what time it is because of the massive station clock on the wall and the radio programmes he listens to all day) but it’s no use. He has the phone near him as a comforting thing, but not actually a thing with a use.

“Nick, I’ve sent you three texts today. Didn’t you see them?”

“Not yet, no”

“Have you checked your phone at all today?

“I’m sorry. I forgot”

He has a specially adapted landline with a flashing light and an extra loud ring but he either doesn’t hear it or says he can’t get to it in time. If we put it too close by, he just knocks it over, so it has to be put out of immediate reach as he needs it to stay connected to the citywide alarm service.

This time last year he was still picking up the phone to call me, sending me texts or replying to mine, and generally in full communication although he was increasingly finding it hard to press the right buttons on the keypad. Texting must be really hard for him and I keep searching for a solution but the real problem is that he just seems to accept a world where he sits on his own all day and no-one gets in touch.

It is immensely frustrating on a practical level because he is effectively a prisoner. He can’t go out on his own anymore. If the carers don’t turn up for some reason (which they didn’t the other day and thankfully I popped in unexpectedly) then he just accepts it.

On busy days when I might not have time to visit, I just want to check in and say hello and see how he is, but it is one way. He doesn’t reply.

The trouble is, I’m not just fretting for no reason: the danger is real. He has accidents, drops things, smashes things and hurts himself. He’s not really safe to be left alone for long periods. How can I know he’s OK? The only time he gets in touch now is when he thinks he’s running out of wine.

At his request, I stopped hiding the week’s worth of wine and put it all in one place so he knows it is there and does not wake up panicking – but this means he has no reason to keep in contact. 

It’s as if he doesn’t care one way or another and I find it so upsetting. I know he does care and is delighted to have some company but it’s the apathy and closing-in of the illness that is horrible to be around and for all the changes we’ve been through, this is the hardest to bear.

As someone who’s known him all his life, watching him change like this feels painful all the way. I can’t get used to it and I don’t want to. But it’s the way it is and I must.

Sharp Dressed Man

 “Right! We’re off to town!”

I can’t stand the sight of Nick’s manky sweaters any longer. Everything is ripped and stained, with holes in odd places. And as for his socks…

The beautiful soft cashmere mix jumper he got for Christmas is unrecognisable after many dinners spilled down the front, elbows worn thin with scuffing, its rich chestnut colour strangely tie-dyed after the carers had thrown it into the washing machine with his blue socks, towels and sheets.

“Classic”, I think, “the one time they actually did the washing” because when the laundry basket is getting full they are supposed to stick a load in the machine in the morning, then take it out at lunchtime. But they don’t.

I have darned the elbows of some of the jumpers – one that belonged to our dad, for instance, that we both felt sentimental about – and sewn up the seams that were coming apart, because Huntington’s turns even the mildest mannered man into the Incredible Hulk, arms bursting out of sleeves with the flick of a muscle.

So Nick needs new clothes. I wouldn’t presume to go and buy them for him on my own. He still has some say in what he wants to look like, though this is sometimes random – he can be very clear that he wants to wear his leather jacket, but with old baggy chinos and a grey prison-issue style sweatshirt underneath. And red and white striped fluffy Christmas socks. And his alarm pendant round his neck.

I thought I would take him to M&S. I used to go shopping there with one of my Alzheimer’s clients and they were unfailingly courteous and kind to her, but Nick has other ideas.

“I want to go to Boyes” – which was his default shop back in the northeast for practically everything that isn’t food. It’s one of those slightly old fashioned stores that seem to stock anything from shampoo to bras, from licorice comfits to weedkiller, fishing tackle to crayons and cool stationery, all under the one roof. We used to take the kids there for colouring books and sweets when they were little and we all loved it. And I always made a beeline to Boyes when I visited Nick, for their amazing supply of coloured lacy tights.  I’m not sure about the men’s clothes though.

I don’t even think there is one in Sheffield (oh, just did a search and what do you know, there is! Way on the other side of town though)

Anywhere else you’d like to try, Nick?

“Peacock’s” he says.

There was a branch of Peacock’s in Consett that was just stumbling distance from his house there and increasingly as far as he could walk. I know there’s one in town, on a pedestrian precinct with easy wheelchair access, so we’ll go there. Great. Though suddenly the film Rain Man pops into my mind with the Dustin Hoffman character insisting that he gets his pants from K-Mart.

Nick used to wear handmade suits with peacock lining and had a silk tie and matching socks for every day of the week and two for Sunday. Handkerchiefs too, peeping out of his breast pocket, sometimes in a contrasting colour. He liked cuff links and those elasticy things that hold up your shirt sleeves. Off duty, he still looked sharp and always had smart shoes that he kept in shape with a shoe tree. (I’ve never had a shoe tree in my life) 

He always wore aftershave balm and cologne and smelled good.

He still wears cologne but it’s what the carers help him spray on after his strip wash in the morning, and he can’t do up a button any more, let alone a cufflink.

I still iron his shirts though, and press his trousers. Increasingly, I think he just chooses the first thing on the pile when the carers ask him in the morning what he wants to wear (he says they do and I hope this is true) so I try to make sure that at least it is reputable. The carers don’t seem to notice his holey socks though, but maybe because they seem to wear out almost on contact – that Hulk thing again.

Anyway, we’re going shopping.

Birthday Boy

Nick’s birthday is this week. He’ll be 55 – finally old enough to qualify for residence in a sheltered housing association though it’s too late for that for the time being. He is happily ensconced in his council flat, and the bathroom adaptations and wheelchair ramp are to be installed in the next few weeks.

“What would you like to do for your birthday?” we asked. He said that he would like to have a party. Well – I had already made that declaration to myself that we would be more social, bring the world to him if we needed. His list of invitees included his children (currently in the middle of GCSE mocks in Newcastle) our 91 year old stepmother, his lovely friend from the north east (whose son is also struggling with GCSE mocks) and his old school friend from London. 
With less than a week’s notice for making a trip to Sheffield on a Thursday night, I thought it might be a wee bit unrealistic. But we have invited them all anyway, with the proviso that we know they probably won’t be able to make it this time but not to feel put on the spot, we’ll have a proper party later in the year with a bit more notice and preparation time. Thursday will probably just be us and one or two friends who have been really good to Nick in the last few months.

But I have done a slightly unethical thing (or is it? I don’t quite know) and gone to Nick’s Facebook account to put a call out to all his friends and contacts there. Nick is no longer able to type or even open up his laptop anymore, I explain.  He can’t keep in touch on his own initiative but his heart still often turns to his old friends. So this is his sister posting from his page to tell you that it’s his birthday coming up and he would be so thrilled to hear from people. Please get in touch if you’d like to send a card and I’ll give you the new address.

I’ve had lots of replies – many from the wives of his old school friends, ain’t that the way, I thought to myself! - and some people didn’t even know Nick was ill let alone that he is back in Sheffield. They are all keen to get in touch and the wives say they will give their husbands a nudge to make more effort to visit or telephone. So I think I have done a good thing but I haven't told Nick so it does feel slightly weird, like organising a surprise party for someone behind their back. I just hope it pays off with lots of birthday wishes and cards to make him feel loved and connected with the wider world. 

Meanwhile, we had been talking about how this time last year I had gone to visit him in Consett and neither of us could remember what we’d done to celebrate.

All his 2017 diary entry (written by me, of course) for the day said was, “Happy Birthday! Mel visiting”

It wasn’t til much later on that I remembered exactly what we’d done. We had gone for lunch at our favourite Italian place – kind of a roadside caff from the outside, but a wonderful hidden gem once you ventured in, with the most extraordinary food. It’s a few miles out of town and back in his “going out for lunch” days Nick used to go on the bus, but since he had become more wobbly he only went there when I could take him in the car. 
So we went there, to Michelangelo’s for lunch and then in the evening Nikki and the children came to visit. We all went to Nick's favourite pub down the road and then came back and opened a bottle of fizz and talked excitedly about the campaign I’d been hatching up to raise money and awareness for the Huntington’s Disease Association. 


All good – until after they’d left and I went to bed, Nick said he’d stay up a bit longer to watch TV. That was midnight. I woke suddenly around 2am with a sense that something wasn’t right. The hall landing light was still on and I could hear Nick’s bedroom radio playing much too loud.
I was scared that he would pass out again, be sick and choke, so it was a frightening night as I tried to stay up, dozing with one eye on the open door and not daring to nod off properly until it was almost morning.

“Nick?” I got out of bed and blearily went to see if he was ok. He was lying fully clothed and flat out on his bedroom floor, squeezed weirdly between his bed and the chest of drawers. One of the drawers was hanging out and looked as if it had hit him on the head. I couldn’t wake him. Couldn’t move him. He was out cold. Was he breathing?

Thank God, his alarm bracelet was there on the table and I pressed it, then had to run downstairs for the phone – and there on the kitchen work surface was the bottle of brandy I remembered seeing when I‘d filled my hot water bottle before going to bed. I nearly screamed. It had been full at midnight. Now it was just a couple of measures short of empty. 
When the paramedics arrived they were cheerful and calm but I was visualizing hospital emergency admission, Nick needing to have his stomach pumped – a whole bottle of brandy in less than two hours! When he had already had a fair bit to drink earlier. 

But the team had him sitting up, telling them his name and date of birth and they calmly got him undressed and into his pyjamas, joshing him because he had obviously been celebrating his birthday a bit too well. 

I was scared that he would pass out again, be sick and choke, so it was a frightening night as I tried to stay up, slept with one eye on the open door and didn’t dare nod off properly until it was almost morning.

When I finally woke up and stumbled through to his room, the bed lay rumpled but empty, a radio chat show at full blast downstairs and there in the kitchen was Nick, dressed in clean clothes and bright as a button, making himself an instant coffee. That’s when I realised that he had an alcohol problem. To be able to drink as much as that and be perfectly fine the next day, could only mean that he was used to it.  

I had seen the bottles in the recycling and I always knew Nick liked a drink but I'd had no idea of the extent of it. Actually I still had no idea until he actually moved to Sheffield and I understood just how much of an addict he was. Visiting only every few weeks, I had only ever seen the social picture, not til now the whole bottles of late night brandy or the passing out cold.

So that’s how we spent his last birthday. I'm hoping that this one will end better. 

A Fine Vintage

It's what I’m wishing for in 2018, a fine vintage year of mellow fruitfulness. One that lingers on the palate and in the memory - sociable and warming but easy on the pocket as well as the old grey cells. A Grand Cru, Chateau Pearson 2018. Well, we can only hope!

Christmas seems such a distant memory, even though we’ve still got the cards and decorations up, and all the excitement and bonhomie of New Year too.

Today it’s drizzling and my head is fuzzy and it really feels like that sudden unwelcome bump back to earth and back to reality.

I bought Nick a new diary for the year ahead, and put the 2017 one in the recycling. Then I took it out again as I realised he has kept all his diaries for the past fifteen years and maybe he wants this one too. A record of a year in which he made no entries himself but the pages gradually filled up with appointments for health professionals and all the details of his move to Sheffield. Then: benefits advice lines, social services, council tax, housing and emergency accommodation officers, builders, plumbers, support workers, care providers, hospital, dental, medical appointments, butcher baker and candlestick maker and Uncle Tom Cobley and all. The strange itinerary of someone whose body is no longer entirely their own affair.

There are some fun things there too – his weekly outing to the pub or the cinema with Simon, his Saturday lunch with one of the carers from my old firm, the odd drink with his old friend Dave.

I'm determined that this year will have loads of those and we'll be kicking off with a party next week to celebrate Nick's birthday. 

But in the meantime, here's the sobering reminder of how much things have changed. The diaries tell a story better than words. In 2004 he was running a business and doing some catering work on the side for his (then) in-laws. Married. Cooking. Driving. Not socialising much, a toddler at home and another baby on the way, a hard working family man.

By 2013 he was living alone, separated but seeing the children at weekends, still working and driving but not for much longer. This was his manic phase, making sense of life by writing endless to-do lists and ticking them off.

A year later he was still making lists but his writing is wobbly and wild. By 2016 he had stopped making lists and his diary lay on the kitchen counter open at the wrong week, no entries at all unless they'd been made by me. That's when I knew it was time for him to leave. 

This year? There may be trouble ahead, as the song goes. There are certainly physio and support service appointments and, as Nick's mobility has taken a visible nosedive lately, probably meetings with health professionals to talk of electric chairs and hoists. All this will be in the diary. 
But I am planning lunches, outings, bringing friends round to say hello (my friends - shamefully, many of them have not even seen Nick in the time he's been here. Not for want of trying but because it's been difficult. It's hard enough to get to meet my friends full stop these days - how is it that we all seem to have got busier?? - and Nick's care needs and somewhat unsocial hours have made it tricky to fit into other people's patterns. Also, in truth, I have often really needed to get away from him and see other people, think other thoughts.) But I think it's time to bring them into the picture and make his little flat into a party house. When we have made the effort to involve people and do something social he has enjoyed it so much, "Oh, I have enjoyed this. It's been lovely!" (for all the world sounding like our dad) so I want to make it happen more.
I want to make the most of our time together while Nick is still able to socialise, and this year the diary pages are going to look like something from the Great Gatsby. Photos, leaflets, phone numbers of pretty men and witty girls, coloured inks and felt pen doodles? Yep. There may even be stickers. I am determined that this is going to be a very good year.