Fortunately / Unfortunately

Did you ever play that game? We used to love it when my son was a young sprog.

It goes like this:

“Unfortunately Nick’s bathroom door was wedged open for a month when the handle fell off.  I was very worried that he was going to get trapped in there again, as unfortunately it had happened before.

Fortunately, he had been wearing his alarm pendant and the paramedics got him out.

Unfortunately, the subsequent new handle did not last too long, no match for Nick’s renowned super-strength.

Fortunately, the council have finally come to do the repair and put a new door on. Hurray! I don’t understand why the whole door has had to be replaced just for a new handle but hey! what do I know. Gone is the cat litter wedge, reinstated is his privacy, and that’s good enough for now.

Unfortunately, Nick has broken another remote control by dropping it on the floor.

Fortunately, the lovely OT at the neuro service has given him a new gadget to try, an articulated extendable arm thing that clips on to his table, with a robotic claw to hold the remote control. Four days in, it seems to be working.

Unfortunately, we now have a new casualty as Nick has somehow managed to pull the radiator away from the wall in his bedroom. Unfortunately, it is right beside his bed and had leaned onto him while he was sleeping and burned his shoulder. Unfortunately the carers did not tell me what had happened but had carefully made his bed around the weirdly leaning hunk of metal as if this was normal.

Fortunately, I popped in to say hello and saw it and fortunately it was a warm day and I turned the heating off. Fortunately I was able to ram a cupboard up against the edge of the radiator to keep it in place until we can get it repaired. Fortunately Nick is not badly hurt.

And fortunately I had complained so vociferously to the council about the total bollox of the door repair that they probably have us on a hot list now and someone will be along in the morning to sort it out. 

I am not even going to talk about the carers, who unfortunately over the past year have generated so much disruption and chaos in their wake that I sometimes think they cause more problems than the actual illness. The service improved dramatically for a while and then it all started to slide downhill again. Lately they have hit a new low.

Unfortunately we are stuck with them until I can find another provider, and I have been feeling very helpless because it seems it’s not that easy.

Sometimes it is all so overwhelming and over-facing that I don’t know where to begin and it’s easier just to plod on, blindly. Full of such tenderness for my brother, just wanting to protect him and make things as right for him as I can.

Fortunately, we’re not as alone as I thought.

I had already given up on contacting the care agency. Like the proverbial bad boyfriend, they have stopped replying to my calls. But after the latest lot of flagrant uncaring and a couple of sleepless nights fretting, I emailed the social worker asking for her help. Then I spoke with Diana, our HDA regional advisor, today, and she immediately volunteered to take action. She will co-ordinate a meeting with herself, the social worker and the NHS neuro-enablement team, assessing Nick’s ongoing needs and whether the current care service is fit for his purpose.

Not just that – she asked, how are you both coping? Is there anything else I can do to help?

So much of caring happens alone, behind closed doors and invisible to the outer world. So much of the time it seems that no-one is listening. You just get used to taking on every burden because at least that way you know it will get done in the end. So having someone ask how we are, and be ready to take on these challenges with the extra clout of an organisation, is just jaw dropping.

I realise that things won’t necessarily change overnight. But today I’m facing things with a lighter heart, like a bullied child walking back into the playground knowing that there’s a secret ace up their sleeve because now they’ve got some bigger kids on their side. There is still all manner of trouble ahead, but today I feel fortunate to have the prospect of more support. 

Health and Safety

It’s been seven hours and twenty seven days and I wish I felt as poetically mournful as Sinead O' Connor in the video but no, I’m just hopping mad.

My brother’s bathroom door is still unmended and the council repair team have come to measure it four times and gone away again.

I’m not joking. It’s like Right Said Fred.

The door is still wedged with a bag of cat litter wrapped in polythene and gaffer taped to the frame, and the carers have all been showering him with the door open. He has to use the loo with the door wide open and so do they, and so much for respect and dignity. Aside from the danger of Nick getting stuck when he’s on his own, it’s really awkward for everyone.  

I sent a complaint to the council who replied that I would get a response within three days. Ha ha! Still waiting.

Went in to their offices and demanded to see a manager.

“I’m not supposed to do this,” said the sympathetic officer I saw, “but you could try calling ----- on this number”

But that was a week ago and I still haven’t been able to get through. This magic person is based in an office on the other side of town that I simply don’t have time to trek over to on the off-chance that he might be in.

Do I call the local paper? Get them to come round with a photographer to take a picture of me and Nick pointing at the hole in the door where the handle should be, and the home-made stopper (which is bearing up surprisingly well in fact, and thank goodness for that) ?

I am very very tempted to just organise a fait accompli and let Nick get stuck in there and have to call out the alarm service, but it is too unfair on him – even if I explain really thoroughly what we’re going to do, he will get flustered and panic.

He was such a mischievous little boy and I still see glimpses of that, just every now and then, but mostly there is no room for naughtiness or bucking the system; he needs things to be routine and ordered and the same as they were yesterday.

It’s me that wants to buck the system, and I think for bloody good reason.

I’m also scratching my head about Nick’s wheelchair, as the electric wheelchair we were so excited about has turned into more of a curse than a blessing. Most of his outings involve car travel, especially now the weather is getting colder, and it won’t go into the car unless we dismantle the power pack and even then it is terribly heavy and unwieldy. It’s not really meant for manual use so I’m worried about the tyres too. Simon and I are so used to lugging things about and getting barked shins and bruised ankles that it doesn’t matter to us, but I can’t expect carers or friends to risk their safety, and the carers who are supposed to take him out on a Saturday are all saying it’s too heavy to lift or that they can’t get it into their car. So the great treasure has turned into a complete liability.

We need to get a collapsible one, but Nick has already broken two of those with his weight and super-strength. Are there any portable wheelchairs that are vaguely HD proof? And would we even be able to afford it? I need some advice. The OT and physio are coming to see him tomorrow, so here’s hoping.

Lose weight now! Just don’t ask how.

It seems that I have shrunk.

I was in London last week and people that I hadn’t seen for a while were commenting on it and asking what I’ve done to lose so much weight (about ten pounds – though I only know this from weighing myself at my mother-in-law’s after yet another comment, because we'd all weighed ourselves at Christmas and just for the record I wrote it down) 

(For the sake of my sanity I kicked our own bathroom scales out long ago)

I hadn’t really noticed it myself, especially now it’s the season for woolly jumpers and big coats, and none of my trousers have been anywhere near falling down. 

To be honest, for once in my life I have just been too busy to think about it.

And there, ladies and gentlemen, you have it – my weight loss secret.

Become an unpaid carer for a person with a complicated condition that there is no cure for and very little specialist support (very little support full stop if you don’t happen to live in the right part of the country, which is most of it)

Someone with a chaotic lifestyle, even when they are physically unable to get out of the house.  Someone who needs you all the time. Who might call for help just as you are about to sink into the bath at the end of a long day, or when you were finally sitting down to dinner with the rest of your family, or making a salad, or thinking how you could just fancy a nice cup of tea and a biscuit or three in front of the telly.

They need you. You have to drop what you were doing and go. If you can't go right away, the worry will gnaw at your guts until you can get there to try to solve the problem. 

I pretty much guarantee that this will affect your weight.

And the hole that knots up your stomach each time there is a crisis – it makes it hard to relax. You are too busy to fill that hole with food.

If the person you care for has trouble chewing and swallowing, as Nick does, then you will spend mealtimes together helping them to eat, feeding them the last tricky bits with a spoon and wiping up the spills. Patting them on the back and clearing airways if they choke. You may not feel like eating much after that. And because Nick has such a radically different diet from me, there is never the temptation to polish off any leftovers. Or (unlike his cat-sitting neighbour) raid the fridge. We don’t even like the same kind of wine or ripeness of banana.

The only thing I ever eat or drink in his house with him is coffee. Black and strong like my men, dark and bitter like my women - as the old saying goes.

I just want to make it clear that I am not skinny by any stretch of the imagination and have never been the kind of ethereal waif like woman who “forgets to eat.” No.

But stress, and being constantly on call, and the accumulated trauma that you just have to swallow because there’s no time or point in dwelling on it now, does have an effect.

When I was much younger and my mum was starting to show the symptoms of Huntington’s Disease, stress affected me differently. I got fat. It was my coping mechanism, the only way I could think of to try to stop time, pretend this wasn't real, create some armour against the terrible thing that was happening to our family. 

And Caitlin Moran says this very insightful thing, although I think she meant a broader definition of the word carer:

"Overeating is the addiction choice of carers, and that's why it's come to be regarded as the lowest-ranking of all the addictions. Its a way of fucking yourself up whilst still remaining fully functional, because you have to. Fat people aren't indulging in the "luxury" of their addiction making them useless, chaotic or a burden. Instead, they are slowly self-destructing in a way that doesn't inconvenience anyone. And that's why it is so often a woman's addiction of choice. All the quietly eating mums. All the KitKats in office drawers. All the unhappy moments, late at night, caught only in the fridge light." *

It's different these days. Now my coping mechanism is to cope. I can't not cope, although sometimes that feels very close. And I can't afford to pretend this isn't happening, because Nick needs me. 

Today is my long working day and I won't see Nick until this evening. Accordingly, I had got everything in place for him when I left him last night around 10pm. But as I set off for home at lunchtime hoping for a nice bowl of home made soup and a quick flick through the weekend paper before this afternoon's session, a message comes in his laboured texting to tell me that his online food delivery has not arrived for the second consecutive day and this time it's because his card has been declined (how? I checked his bank account when we made the order two days ago) and also his remote control has stopped working and the neighbour is banging on the ceiling again because Nick had put the radio on for the Archers. And - most urgently - he has run out of wine. 

Are there no other people he could text, asks a well meaning friend, but you see, Huntingtons makes you very set in your ways. It is so hard for him to press out the words on the keypad and however much I remind him he just can't remember to use the quick dial. So it is largely up to me. 

I grab a packet of soup and an apple for my lunch, get in the car and go to the rescue. If I'm lucky I'll get some toast at my client's house later. 

It's the "Big Sis to the Rescue" diet, but there are definite health warnings attached for the long term and unless you are living this dream yourself, I really don't advise that you try it. 

*How to be a Woman by Caitlin Moran, Ebury Press 2012

Loneliness

A letter arrives from a friend in Canada. This wise, funny, feisty woman has been a lifeline for me for so long and her letters always cheer me up and keep me stronger. She reminds me to do art and laugh and not wait around for life to roll up with stunning opportunities on a golden platter.

Now her partner has been diagnosed with a rare and debilitating condition and she has become a carer and she’s pole-axed by the shock of it.

She has written to ask me for tips. How do you do it? How do you become a care-giver (as they say across the Atlantic) for someone you love and not have your whole relationship change out of all knowledge? How do you spend so much time catering for their needs and not lose yourself? How do you cope?

Sometimes she has scolded me about not making enough time for art and writing and fun because my time is so swallowed up by caring. Now she’s experiencing that for herself, scared and grieving for her partner and wondering what has happened to her life. Suddenly it’s me who’s the encouraging one, reminding her to do art and laugh and somehow make time for herself.

As a friend said recently, someone who suddenly found herself looking after her dad after a stroke that quickly led to full-on raving dementia – “Even nice people don’t seem to really get it, until they’ve actually been there themselves.”

And that is why caring is lonely.

The only people who really get it are other carers and they are mostly too busy with their own care-giving to do much more than give you a virtual hug on Twitter. (Oh, but thank goddess for Twitter. Like Susie’s letters, it has been SUCH a lifeline. )

Mostly the rest of the world just doesn’t see how hard you’re working and how worried and stressed you are and what you’re giving up on behalf of another person. Even if you try to explain (and personally, I hate having to spell it out because it’s hard even to begin to unravel the cumulative factor of all the hundred small things you might do in a day’s caring, let alone the big ones, and anyway I don’t want to dwell on the negatives), then it is unreal to anyone who has not been in your shoes. And that is a lonely feeling.

Even paid carers don’t get it – on my return from holiday last week, one of Nick’s carers asked why I had not got away for longer or gone with my husband.

“Because one of us has to be here for Nick…” I said, and she looked faintly surprised.

Her team see Nick four times a day and their service is gradually improving, but nine times out of ten I am still clearing up after they have been, putting their used gloves in the bin, wiping the sticky table that Nick sits at all day, cleaning custard off his glasses and picking lumps of poo out of the washing machine (I did all of these yesterday)

But since their HDA training things really have improved and on the whole they do a pretty good job.

Nevertheless, they come in to a home where the shopping has been done and put away in the fridge, the wine is stashed away to be doled out daily, a new delivery ordered weekly so it never runs out; where the shirts are magically ironed, the loo roll replenished, torn finger and toe nails clipped, and where Nick’s ongoing audio-visual and technical issues are dealt with daily.

And that’s just the frilly stuff, the stuff that basically anyone could do; the harder part is the admin, the chasing of benefits and council services, the appointment making and attending and the dealing with the neighbour and the repairs and trying to get funding for another holiday and another wheelchair, and co-ordinating with the care agency and looking for a PA. The financial dealings and power of attorney documentation and the cataloguing of family photographs. Trying to organise social activities and outings and skyping with Nick’s children and at the end of the day, being with my brother and simply hanging out together.

All this is the day to day maintenance stuff; I haven’t even begun with the crisis management. Or the guilt. It all takes up a lot of time and few organisations are geared to make things easy for carers.  It’s difficult to delegate or share so when you're really up to your neck in it, listening to automated music as your call inches slowly up the queue, you can feel very lonely indeed.

In Radio 4’s excellent programme "The Anatomy of Loneliness", carers are mentioned as one of the loneliest groups in society, especially if they’re female. Caring takes place behind closed doors, you spend all day slaving just to stay on the spot, and however hard you work your social status is pitifully low. Of course you're going to feel isolated.  
I think for me, one of the saddest things is not having time for other people. It's just the last thing on the list. I can long for company in theory but just feel so completely drained that all I really want is to be left alone. 
Also, I find that when it's been a tough day, I might not get a breathing space til late at night; it takes time away from the world to regain my strength and identity away from caring, and sometimes it can be hard to switch heads and connect with even really good friends. 
I am so, so lucky to have an understanding partner and that counts for an awful lot. My heart goes out to the people who are caring for their spouse so they have no-one to sound off to at the end of the day - that must be the loneliest situation of all. 

But we do need friends, and social interaction. Again, thank goddess then for Twitter, but also for letter writing and postcards and just smiling at strangers and being kind. As often as possible, be kind. 
And as the movie producer said, Show Not Tell. It has helped me feel less lonely to write this blog, but also to introduce friends to my brother and involve them in the caring process. When someone else sees the situation first hand, you have a witness as well as someone to share the load, and it can create a new intimacy to bring them in to your reality. They see Nick as a person then too. Really doesn't work with everyone, I know, and out of all the people I know, only three have returned to visit Nick with me again, but it is still worth a try. 

And never underestimate the healing power of cats on the internet (or dogs, if you prefer) - again, I'm lucky to have a teenage son with an endless supply of links to funny sites (my current favourite is crap taxidermy ) that sooner or later have me roaring with laughter. I don't do animal cruelty, but there are some very daft critters out there. 

The Fine Art of Not Caring

Not caring! Well - I am working on this.

I came back from my holiday feeling so relaxed and laissez faire about everything. it took a while for real life to kick in, so this lovely feeling lasted for a few days, even though quite a variety of new problems immediately raised their ugly little heads. In Nick's world it is a rare day that passes without incident. 

But with the insight of a few days’ worth of stepping back and the world not having ended as a result, I thought, oh well – no point in getting upset about these things.

It felt unfamilar. But I decided that I would let myself off the hook and not try to sort it all out instantly and perfectly.  I would do what I could and not let it derail me.

It was a good, an amazing feeling. It had taken a proper holiday and some physical distance in order to be able to feel like that, and to be so objective.

And some of the things sorted themselves and the others seem to be long drawn out soap opera state of affairs that will not be influenced in the slightest by me getting my knickers in a twist. But then today.…today, it all just got to me. The neighbour, the carers, the door. The Huntington's fall-out.

I shouted at my brother and was arsey with his carers. I think I had good reason for both but I felt really bad about it afterwards and cross with myself.

It took a big stompy walk and some mental self-beating-up and a swim and a glass of wine to get back to some kind of equilibrium, and then I realised this: when you do care for someone, you CARE, in capital letters. It makes it hard to let go, and almost impossible to be objective for very long.

One of the things I learned from my dad is to be nice to people. Those who know me very well might be a bit surprised to hear this, perhaps, but I do try, and it is kind of a default setting for me to have a positive outlook. Kind words cost nothing and I feel better when I'm seeing the good in others and having some kind of positive exchange. 

But becoming a carer made me mean. The constant fighting for basic rights and services; the discovery that asking nicely does not do the trick, but kicking arse often does; the utter frustration of being the only advocate for a helpless person when no-one seems to be listening, or even just doing their job. When even sympathetic, well-wishing people just do not get it unless they have been in your shoes, and every little thing seems to take such a lot of your energy and so much time. 

All this has made me a mean, mean girl with a mean old gnarly knot of fear and resentment and fury that had taken up permanent residence in my stomach - the result of too many emergency call-outs and unforseen fuck ups and me having to manage it all, all of the time. 

Having a few days away from this kind of rebooted my settings and I started the week feeling sunny and expecting only good things. Nothing drastic had happened while I was away and I was clearly not as indispensable as I thought. Great. Surely I could now step back a bit. 

Life of course had other plans.

The thing is, being mean makes you feel sour inside and it's exhausting. Also, it might feel better at the time to kick some arse because God knows some situations deserve it and you need to vent that frustration somehow, but when even being really, really mean does not get results (yes, I'm talking to you, Sheffield City Council), it is better to save your precious energy for the things that light you up and nourish you for the long term. That's what is really needed here.

So no, I'm not on holiday any more and life with Nick is back to its old complexities, but I'm wanting a holiday from mean. I was thinking about what made me so relaxed and happy over the last week, even after the plane touched down on rainy Manchester tarmac and the summer clothes went back in their trunk. 
It wasn't just the total lack of a to-do list, although that has been a blessed thing.
It was something to do with not caring - not that I don't care, or will stop caring about Nick or being his primary carer, of course, but just - not taking it all so personally. 
I can't ever be objective where my brother's concerned, but the twisting sourness in the guts and the arse-kicking attitude hurts both of us. There has got to be a better way. 

I am going to try looking after number one as well and do the things that nourish me so I can look after him as well as I can. And it is also something to do with being kind, being responsible without being nasty or feeling that twist in my gut all the time; seeing that some things will just take their course whether I try to intervene or not, having the courage to step back a little bit, and ultimately caring for the person I love but where the daily annoyances and obstacles and curveballs are concerned, caring but not caring. 

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.