A Lesson.

So that was Christmas, as John Lennon sang, and what have I done?
Slept, mostly. Boy, have I slept, like a cat, like a baby, more than I can ever remember sleeping. Sleeping in the afternoon. Turning in early. Waking up at the normal time and then going back to sleep for another two, three hours.
I’ve been ill, though. Proper, knock-you-down-where-you-stand, incapacitating flu, where you just have no choice but to go to bed and stay there.
Thank goodness for everything stopping for Christmas Day and then that sleepy downtime between Christmas and New Year when we hadn’t got much booked in anyway.
It’s been a week now and the aches and whirly bedrooms are abating but I can still feel the virus running through my system, the cough is still hacking out of my lungs and I’m weedy and can’t martial my thoughts two miles ahead the way I usually would.

Simon took care of everything – cooked, entertained, chauffeured, ministered to bro - all the things I would normally do – and the children have been to visit, and he’s had a really cracking Christmas.
His fridge is full of cheese and home-made trifle and he’s been given enough chocolate to last him, ooh at least til the end of the week. I am so grateful.

And relaxed. Sleep is such a healer.
But during my long, fevered Christmas night, so delirious I was hanging upside down out of bed trying to cool my forehead on the tiled fireplace, awful thoughts were pounding through my head and one thing was clear : I can’t keep it together indefinitely the way I have been. Something had to give.

Simon has been beyond spectacular and what I’d do without him I just don’t know, but he still only takes care of the basics. I’m the one who keeps it all ticking over.  And what if it had just been me and bro? This was one time when I couldn’t just stagger through, feeling a bit rough but coping anyway. I couldn’t even sit up.

So yes, I feel that this illness and enforced rest has taught me a lesson: understanding my limits. 
I’ve talked in the past about needing to ask for help more, and here and there people have offered, and some really do help already, with lifts and little socials and just invaluably staying part of the picture.
But I think I've inadvertently deflected other overtures because it is always hard to explain what kind of help we need exactly when the needs can be so amorphous and yet so complex. And you’ve kind of got to know Nick to know what to do. So a lot of the time it is just easier to get on with it all myself. 
But I don’t think I can do that anymore – even with Simon's fantastic back-up, there is too much, it’s too big for us both to deal with on a sustained basis.
When Nick had his service assessment recently, the lovely case manager from the Neuro team put it very well. She said, although Nick appears to be living independently, making his own decisions, we all know that he isn’t really able to do anything without constant intervention on all levels.

So I’ve been thinking. We need more back up, and I need to ask for very specific help and more of it. 
I'm still trying to figure out what could be most useful, but I think it would be social. I'm thinking of a pool of people I might be able to call on, to go in and visit him for a glass of wine (there's no point me saying "for a cup of tea", now, is there?) and a chat, or to discuss what's in the paper with him, or read him a chapter of a book, or take him a rice pudding, or even just pop in to check that everything is running smoothly, just so that I'm not always the absolute first point of contact all the time for everything. 
I don't know quite who they'll be, these good soldiers, but if you're reading this and get a call from me, don't be alarmed - after all, you can always say no. But I need to start opening up the conversation, and it seems as good a resolution for 2019 as any. 


Build me up, Buttercup

A visit to the dietician this week.  She has a wheelchair scale like a treadmill that allows someone who can’t use a standard scale to get weighed accurately. Different wheelchair since the last appointment, so that got weighed first and then again with Nick sitting in it.
We hadn’t thought that he had lost any weight as his trousers seem to be fitting well and not falling off him, and his belt is at the same notch, but alarmingly, the scale says that Nick has lost 8 kilos since his last weigh-in in June. That’s over a stone.
It’s a lot for anyone to lose in six months, but for someone with Huntington’s it’s very serious indeed. He just can’t afford to lose weight like that; any more and he’ll be in real trouble. It’s one of the key signs of the disease progressing. At risk of infection, pressure sores, respiratory failure and pneumonia. A lot of people with Huntington’s die from pneumonia.  

How has this happened? Two reasons, I think: one, his incessant involuntary movements have got worse, and it must take an awful lot of energy just to sit in a chair. Even with his pureed soft diet, it takes a lot of effort to eat. So for Nick, the most routine activities are fraught with hazard and use up more calories than he’s been taking in.
We’ve already requested a medications review to see if a higher dose can calm his movements a bit, though I don’t hold out a huge amount of hope because short of horse tranquilliser, there isn’t yet any drug that will actually stop the chorea.

Second reason for dramatic weight loss: meal timings. Despite my ongoing calls to the office to complain, shout and plead, the timings continue to be all over the shop.
Breakfast has always been in the care plan at a time specific 9.30 – 10.30am.
I used to get cross when I found that Nick hadn’t had his breakfast until way after 10, but now that seems like a Golden Age.
Over the last month or so, carers have been coming to get Nick washed and dressed and give him breakfast between 11.30 – 12.00. Then he gets lunch about an hour later, when he’s not really hungry yet.
Bear in mind that he is not able to prepare his own meals and relies on a carer sitting with him and feeding him with a spoon.  If this is happening when he doesn’t actually want it, he has no say in the matter.
Meals are supposed to be spaced several hours apart but not too far apart. But having had lunch at 12.30, on the days when I'm not doing his evening meal he may not get dinner until almost 9pm.
I do believe that this is verging on abusive. It’s certainly on the spectrum of neglect that you hear about when more extreme cases come to light in the press. 

When I complain (frequently) I’m told that it’s because there’s been an emergency with the person before Nick, but I’ve stopped buying this; they’re doing house calls, not A&E, and even in this roller-coaster world of adult social care there are only so many actual emergencies. They know I live nearby, and that if there’s a reason they’ll be late to Nick, they are supposed to let me know so that I can step in. But they don’t.

People with HD need routine so that they can make sense of the world; waiting for the carers to come makes Nick very anxious and of course then as well as being hungry, his spasms get worse. He could help himself to a banana but he simply doesn’t have the initiative, and that’s the illness too.
I am so cross and frustrated about it and it didn’t have to take a visit to the dietician to show that it’s not good for Nick’s health, but nothing is changing.

My complaints have now been passed to the contracts department at the council but I’m beginning to think that’s going in the same direction as my complaints to the care company. Nowhere. Even Tommy Cooper is disappointed (aka Cath, our lovely social worker, who up to this point has listened to my woes and then gone “just like that” and magicked some result out of the hat)
We’ve got a meeting next week with her and one of the care agency admin staff – the manager doesn’t even bother to reply to me any more and I wonder how many other people are complaining and if he’s gone into hiding – and my finger is itching to press Send on the howler I’ve drafted to the Care Quality Commission, but I’ll wait until we’ve had this meeting and perhaps this will force a change. Otherwise, we have to find a new provider, and this is the old mulberry bush that we‘ve been round and around before – none of them have the capacity to take Nick on.

So let’s get Christmas over, and think about it all in the new New Year. We have to build Nick up and get some weight back on, which shouldn’t be too difficult in the festive season!
Porridge made with extra milk powder, cream and honey; a mid morning hot chocolate with extra milk powder and a chocolate flake; omelettes and mashed potato with lashings of butter and cheese. He’s not supposed to have crisps or crackers or anything that can catch in the throat but I can make him peanut butter on soft toast dipped in a thick soup. I’m going to be cooking like Nigella this Christmas, by the look of it.

The dietician also suggests that I up his portions so that like an expectant mother he is eating for two.
All of this I can do, but it’s going to take some time to get all the carers on message with this when they have only just understood the absolute basics and can’t even keep to their contracted hours.
And also – Nick is only barely making ends meet as it is and Simon and I have stopped even keeping a tab on how much we’re subbing him, just to get by. And we're not exactly rolling in it. 
He doesn’t have enough income to live on. So how are we going to afford all this extra food? The spectre of the foodbank looms. We can manage, I know we can, but it will take more planning and more time and energy. A lot more planning and energy.
I felt really frightened at first, but my inner Jewish Mother has thoroughly told off my inner whinger and got to work on the Nick-build up programme, and instead of Nigella we’re thinking Jack Monroe as our guiding star.

Meanwhile, Nick has taken his build-up programme very seriously too. He likes a chocolate bar in the evening and I’d bought him four packs of soft chocolates and some cake bars that I thought would last him a week. He scoffed nearly all of them overnight.
I thought the dietician would be pleased with me
I’m not sure if the dentist will, though!

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.


Big Al and his crazy go-go rhythm orchestra

We all know that the internet has its dark underbelly but today this has really given me the creeps. Big Brother is definitely watching us, even though you might think he has better things to do.

See if you can explain this, pop kids: I do Little Brother’s online shopping once a week, in his flat from his laptop, at his address with his email account and bank account and internet provider. He is a creature of habit and likes the supermarket beginning with T…

I prefer to see what I’m buying, tend to shop locally where possible, and use a different supermarket for a big shop. I have never ordered groceries online or had anything more than a local veg box delivered to our home address.
Simon shops our local T… every few days but he tends to pay cash and hates being a number not a free man so he doesn’t use a loyalty card.

However – when I went to do Nick’s online shop this afternoon, the “usual purchases” suggested alongside his habitual order were exactly what Simon had last bought at our local shop. Beer, rizlas, pizza and green apples for the lad, soya yoghurt for me, and a different newspaper than the one Nick reads. How on earth were they appearing on Nick's laptop? 
Were we sure we didn’t want to order these favourites again today, asked the prompt as I tried to check out.
I don't understand how this is possible.
Simon, by the way, had not seen Nick since buying those things, but the only thing I can think of is that it’s our phones. There is no directly shared information but when we’re in Nick’s flat with our phones, the phones must all be having little chats with each other and exchanging our secrets. To the point that Simon and his phone would not even need to be anywhere near Nick but information would somehow transmit to Nick’s laptop. No, surely not, it doesn’t make sense.
I asked our millennial son and he just shrugged – he’s just so used to Big Brother hovering, he doesn’t even question it. It’s really given me the heebie jeebies, though.

When I think of algorhythms, I like to imagine a Cab Calloway style jazz swing artist, Big Al and his go-go rhythm orchestra, all wide grins and trumpets and baggy suits on a podium. The reality is nothing like as cuddly. 
But tell me this – how is it that the internet knows all these things about our consumer habits but sharing actual useful information so that carers acting on behalf of a loved one don’t have to start from scratch and go through extensive security checks every single time they call, say, the local authority?
It would be so useful if (once a basic security clearance had been given, of course) we didn’t continually have to jump through all these hoops; the GP has me down as Nick’s primary carer and first point of contact for instance but although the district nurses have had the same information, it keeps falling off their system so I have sometimes found notes from them “To whom it may concern” with a prescription to pick up meds that the GP knows nothing about, from a pharmacy that we don’t use for any of his other medications. The different departments of the local authority, likewise. 
Of course you need some basic security checks so that people aren't taken advantage of, but when you have to do it again and again and again it becomes very wearing. 
If only they could take a leaf from Tesco’s book!
Would that give me the heebie jeebies too, though, would it be too much?
Forget it, cause it’s not going to happen any time soon. The very thought is enough to short-circuit every appliance in a five mile radius.


Let Love Rule

It's Carers' Rights Day today and I'm looking back over the past year and what I've learned.
Last year was characterised by panic and emergency. This year we've had our share of emergencies and I've often been overwhelmed, exhausted and frightened, but the hyperventilating midnight panics have worn off and I'm learning to surf the crazy waves like a zen surfer. Patrick Swayze in Point Break, that's me. On a good day, at least.

I've been thinking again about love.
As my panic and desperation to make everything all right recede, there is more room for the simplicity of love.
The love is always there, but lately I'm feeling less resentment, less guilt, and more compassion for Nick, and for myself.
Finding it easier to be present - just hanging out in the room together, spending time. As I get older the concept of "spending" time is interesting and I want to spend it wisely, luxuriously and not let it run through my fingers. Spending time with someone who has a progressive illness makes this particularly apt.

It is really really important to have time out for yourself too, to come back to yourself and re charge your batteries. Loving can't half take it out of you.
Exercise. Humour. Sleep. Friends. Pets. Music. Films, a fabulous book you can escape into, any kind of parallel universe that takes you somewhere else for a while - all these things give you perspective. And nature. Nature is the thing that saves me. And art.

As carers we're all surfing those crazy waves all the time while making it look easy; it's amazing to think how strong and skilled we must be.
What keeps you going when you're looking after someone? And how are you going to celebrate yourself on Carers' Rights Day 2018?


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.

An Appeal forChange:

Going out. Hooking up.

This week we had the first meeting of a Sheffield support group for families affected by Huntington’s. When I say “we”, six people turned up and only three of us were actually local. And one of the six was Diana, our regional advisor, and another one was a man who we gradually realised had nothing to do with HD at all but had heard me talking on local radio earlier and just rocked up for a cup of tea and the craic.
But hey! You’ve got to start somewhere….

The Salvation Army had given us a cavernous room set out like a lecture theatre with a tea urn at one end and a flip chart at the other. We huddled together at the tea end and chatted, awkwardly at first. Why have we come here and what do we want out of a support group? And are we really in such a minority to want a support group at all?
I can see why people would not want to get involved. Huntington’s is like a tightrope that you walk along precariously, not daring to look down but keeping your eyes on the middle distance (maybe this is a terrible analogy as I have never walked a tightrope and don’t have the slightest intention of doing so.)
The tightrope is also like a perpetual conveyor belt taking you somewhere you don’t want to go. You know what is ahead but you can’t focus on it because you’ve got to stay upright in the here and now on this spot. So in any group of people with HD there is always going to be someone at the next stage along and it’s like seeing your future, not in a good way.
Nick had wanted to come, though, and I guess we’re at the “nothing to lose” stage – he knows he can’t pretend he’s not ill, he’s in a wheelchair and can’t stop moving and his hands and feet bash out of their own accord every few seconds. But this is how it is, and he’s come to terms with that and doesn’t want to hide any more. As a result, he doesn’t get half the stares and comments that he used to. Now, if anything, people are accepting and often gravitate towards him as someone interesting to talk to.

I took him to the theatre yesterday; he had really wanted to go, and I thought it would be a nice thing to do for us both. Which it was – but coloured by the phenomenal strain of sitting beside a person with HD who can’t keep still in their wheelchair, whose wheelchair is creaking and croaking like a ship in a high wind, and moving slowly forwards and downhill on the carpeted slope. I realised that I just hadn’t thought this through at all. He could not get comfortable. With every fidget and shudder the wheelchair would jolt forwards or sideways another few inches, and every few minutes his arm or a foot would lash out and I was terrified he was going to whack the woman on his left.
I was supposed to be on his left but he kept moving away, and so every few minutes I would yank the wheelchair back and vaguely into place. Hanging on to the handles and crossbar with both hands, as if in a hurricane now, it took all my strength. Never mind “Macbeth” on the stage, the real drama was happening right here.

I genuinely thought someone might complain, as happened with the autistic boy recently in the cinema, but everyone was so kind. The ushers were fantastically helpful and when Nick (to my amazement, as the first act finished with me sweating and spent as if it had been me on stage) said he was having a great time and wanted to stay, I asked if we might possibly sit in the box. They were so kind. Nick had to negotiate a couple of steps up there but it meant he had a choice of two seats, the wooden chair in the box or his wheelchair, and we were on our own and not barging into anyone, and the poor people who’d been behind us could have an unrestricted view.
The ushers settled Nick in his new seat while I went back to get our coats and make my apologies, and by the time I got back to him, a woman who’d been right behind us was next to him in the box engaging him in deep conversation. I had thought she’d be really pissed off but she was sweetness itself, telling him about the restoration of the theatre and asking him how he was enjoying the play. Afterwards we had several people smiling and chatting to him almost as if we really were VIPs emerging from the Royal box.
So, I’m glad we did it. I have an ache all down my side and bruised hands and arms from the holding on for dear life, but Nick had a fabulous afternoon and actually so did I, but don’t ask me to do it again any time soon.
It’s the Nick factor though – continual small crises (and sometimes big ones) combined with an unusual charm that seems to draw people in. There is rarely a day without incident (he went to the theatre with one hearing aid as the other one had broken for the third time in a week, what with his flinging it across the table when he takes them out. He has already snapped the robotic arm for the remote control that was replaced yet again two days ago. And at nine o clock last night as I was lying blissfully in a steaming hot bath at home, I got a call on the batphone saying that he had broken his aerial (how???) and couldn’t watch TV.

This is Huntington’s. This is our daily reality, and there are variations on the theme for everyone, but it’s why I feel the need for a support group – just to tell someone, just to have someone else say, yes I know what that’s like. There was someone there at the meeting on Tuesday who didn’t have that with anyone else, and I so felt for him.
So we decided that we would keep meeting, even if it’s just three women and a dog for the time being, and knowing that a lot of people don’t want to be involved because they’re only stepping on to the ladder up to the tightrope and really don’t want to have to face these problems just yet.

We’re going to do some fun stuff. Food seems to be the main theme for the moment, and being around animals, and maybe (God help us) some singing of songs. It’s like the first tentative going-on-a-date where you just need an activity alongside the real business of getting to know each other. 
Get in touch if you want to join us, or if you already belong to a group and have any tips. Just please don’t suggest the theatre – although, having said that, panto season is coming up and perhaps that’s one place where audience participation and a comedy wheelchair will be actively encouraged.  


Care Dilemmas

We have found a PA for Nick who has started taking him out for lunch midweek, and she is jolly and sensible and kind. She hasn’t batted an eyelid over the cumbersome wheelchair, while the others had been saying it wouldn’t fit into their cars or that Nick was too heavy to push, and last night she and her partner took him out to a gig!
I had a long chat with her beforehand to make sure she had all the information she needed, because seeing him in the evening is very different from a lunch outing. For a start, he had been drinking all day – I’d arrived around 1o'clock with his Saturday newspaper and he’d already poured a full beaker of wine.
So he’ll need a limit on how much he has to drink out, and to watch for him suddenly tipping backwards in his chair and capsizing it, which he seems to do when he’s had a few, or suddenly lurching forwards and bumping his head on the table.
He’ll need something manageable to eat, and his nightime meds that come in a different pack, and help to get undressed and into his pyjamas.
No problem at all. She was utterly unfazed. They had a marvellous time and today Nick is so happy. He went out on his own, with new people, just like a normal guy the way that he always used to, and if there were anything I could wish for him apart from not to have this wretched disease in the first place, it would be that.

And I cannot tell you the depth of my relief and relaxation – that knowledge that she knows what she’s doing and that I could absolutely trust her to look after Nick. It felt like - oh, like a clenched fist uncurling in my chest, and the kind of deep unraveling that I had on holiday but all too soon got taken over by crisis and fire fighting and the ongoing disappointment of things not going according to any kind of plan. 
It made me realise just how untrusting and wary I have become - and for very good reason, because 99 % of his care continues to be unreliable.

The carers don't come in on a Saturday lunchtime as he normally goes out then; because he was going out in the evening instead, I did his lunch and tablets. As I was signing the medications sheet in the carers’ folder, I noticed what time they had come to give him a shower, get dressed and have breakfast – 11.45am. So he would have eaten his porridge around 12.15, about forty minutes ago. 
On a normal day, they’d be coming back within the hour to do his lunch. Nick is so stoic but really, I can't bear it. 
I’ve made a fuss about the timings and for a little while it improves and then soon slides back into them turning up ridiculously early, ridiculously late, at any old stupid time. Yes, I know it’s a win that someone helps us out and that they turn up at all, but there are just so many variables and the enforced feeding of meals at stupid times is such a constant erosion of all Nick’s rights and dignity.

It gives me a permanent lump in my throat and knot in my stomach, a feeling of anxiety and pent up rage that just won’t go away – a silent scream that this just isn’t right. And remember, I know, I have worked as a carer for one of those big contract agencies, and it is just absolutely shitty how people are treated. I hated going in two hours late to a poor lady unable to get out of bed unaided, who might have wet the sheets and be sitting there crying, humiliated and hungry and alone. 
I would have a rota with six other people before her, and barely any time allotted for crossing the city during the morning rush hour, of course everyone was constantly running late but it was shameful. 
Invariably I would tell the agency so and beg them for more appropriate timings for the bed-bound and needy, invariably they would promise to "escalate" the issue but we both knew it was the equivalent of closing your eyes and going, La la la I can't hear you. 
Really, the whole business of social care, and local authorities using the lowest common denominator for their contract agencies, is just a soul-curdling thing.  

So I continue to look for another provider, and this seems to be much harder than you would think as Nick's needs are complex but the address seems to be the real deal breaker, living as he does on the cusp of two postcodes. But in the meantime there is lovely Helen the PA, just for a few hours a week, and oh my goodness what a game-changing blessing that is. 


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.


Retrograde something

If your life is in any way affected by HD you won’t be surprised to hear that the dramas continued yesterday, and coming from an entirely unexpected source. Apparently it’s planetary.
I have a long working day on a Monday so I’m out all day and pretty much helpless if anything goes wrong. Late morning I got a text from Nick.

They have just taken my wheelchair away Sis”
Eh??? I texted him back.
Nick. What do you mean? Who is “they”??”
No answer.

Eventually another series of painfully spelled out texts tells me that “they” had rung the buzzer and he had let them in, despite specific instructions not to after Sunday’s incident with Vic.
Whoever it was had simply told him they had come to collect the wheelchair, and Nick let them take it away. He doesn’t question anything and it wouldn’t occur to him to put up any resistance. Like taking candy from a baby. It makes me wince.

I put on my Sherlock deerstalker and got on the phone to the most likely suspects: the hospital mobility service who had issued the electric wheelchair in the first place, the local distributor who provide and service the equipment, and the Red Cross.
They all had Nick on file but all confirmed that they had not made any collections from that address, there was no reason why they would try to get it back, and that anyway they would never do that without prior consent or arrangement. Everyone was very helpful but adamant that it was nothing to do with them.

Finally at home that evening, I discovered that the mystery collector had taken the chair but left behind the cushion and half of the power pack, so it would be a fat lot of good to anyone.
Did the person have a uniform? Or any I. D.? asked my son later. Nick wasn’t sure. He didn’t think so. Oh dear. 
The only possible conclusion was that he had been scammed.  He is so vulnerable. You never know who is watching, and we have already established that there are some nutters in the building. Horrible, unsettling thought.

Cut to today, and I suddenly had a wild but inspired guess. I called the big Red Cross warehouse in the back end of Rotherham. Just in case. What do you know, it turned out that they had it. Combination of a clerical error suggesting that the loan we’d had months ago and returned in August, was still outstanding, and an over-enthusiastic but dim volunteer who had taken it upon themselves to round it up. I was too grateful to make a fuss.
One of their lovely, kind regular drivers phoned me to say that he was dropping it off and had left it outside Nick’s front door and all was well.

So that was Monday’s drama. Meanwhile, the key safe is still on its last legs but a replacement will be fixed next week (naturally it turns out to be a discontinued model but some kind soul at the fitters has searched in their cellar and found a spare), the bedroom radiator is still hanging off the wall and the repairers have not got back to us yet, and Nick has found the hearing aid he lost on Sunday but lost the other one and it has not turned up yet. Which means that he hardly hear a thing and has been turning the TV up, and although he has finally understood to keep the volume low, I fear that it will just inflame Vic to the point of no return. He was at it again last night, threatening the carers and my husband and banging on the ceiling, and the housing officer has not even acknowledged my messages let alone respond. The police have been in touch but explained that they’ve had a really difficult weekend with bonfire and firework activity so we won’t see them til later this evening. All we can do right now is keep calm and carry on, as usual. Well, after a fashion.


Just another day in Carersville

Someone asked me the other day what exactly my role as a carer for Nick involved, and I muttered something about project management and admin. 
It is hard to explain all the things you do, often a lot of them at once, so I generally don’t even try. Other carers understand, and the rest is probably like trying to explain the minute complexities of your job, or how you manage a dog and a pram and two kids every day on your morning school run. You just get on with it and do it, that’s all.

Some days are relatively incident free, many not. There are constant issues and freak-outs and crises, but it seems to come in cycles. If you can bear to read it, I’d like to tell you about the last 24 hours.

Yesterday, I dropped round to Nick early because I’d done him some shopping the night before and had a bag of groceries and his bank card. Two carers were there, feeding him his porridge, sitting in the gloaming with the curtains closed. Nick was sitting at a strange angle with the castors of his chair unlocked, so with every laborious mouthful he skidded a little further away from the table, and the spoon. The carers were surprised when I mentioned it, but to position him in his chair and lock the castors has only been in the effing care plan since April and I keep coming in after they’ve gone and finding him shooting across the room. Not to mention the porridge all down his jumper.

Meanwhile the cream for his very cracked fingers had arrived. I’d had two long chats with the District Nurse and then the GP about this because Nick has developed some nasty sore looking fissures in his fingertips. Some of them were bleeding, though he says it isn’t sore and he hadn’t noticed. But the nurse and GP agreed it needed some attention – she’s prescribed a cream that the carers can apply twice a day.  I asked these two how it was going. They both looked blank. It turns out that they have been putting the cream on his bottom. His fingers look as sore and gnarly as ever but he’s got a bum like a baby.

Choose your battles, I said to myself between gritted teeth, unpacked the groceries and made a memo to call the DN on Monday.
Have a nice lunch, Nick, and see you later
On Saturdays he goes out for lunch with a PA. Just once a week. We had a lovely Welsh lady who used to come, tiny but strong. She didn’t make a squeak about the heavy wheelchair, but since she has left to look after a sick husband, none of the other carers from her agency will touch it. Nick has had different people every week, they come once and then disappear, and I feel increasingly frustrated because it is so important for him to have an outing and some company that isn’t me or Simon. 
He looks forwards to his Saturdays - and it is such  a godsend for me too, to have a break on a Saturday afternoon when I can go for a swim and just unwind and not be worrying about him. But lately it’s not been going well.
Last week he finally saw someone who seemed to be up for staying the distance and we were expecting her again. Nick had been thinking about where he’d like to go. We’ve agreed with the agency that while the weather is still OK, the PA will take him locally in the electric wheelchair to one of the many coffee shops and cafes around here, just minutes away. No worries about the cumbersome chair or getting in and out of the car.

It was a glorious autumn day and I was going to wander into town and have a bit of a Tiki tour, as our NZ rellies say, on the way. Charity shops, maybe see what’s in the market at my favourite fruit & veg stall, just stroll at leisure for once, then meet a friend for a coffee. I was literally picking up my keys when the phone rang…

It’s Margaret” – one of the PAs who’s previously been to Nick and then said she couldn’t cope. Not the one from last week, after all. 
Margaret was in a flap. She’d been trying to open the key safe for the last 45 minutes and it was jammed. With four care calls a day to Nick, it gets a lot of welly. She couldn’t get in to the building to Nick and of course he doesn’t hear the buzzer or answer his phone. I said I’d be right over.
I opened the doors with my key and we went in to Nick. I could see that Margaret was not keen on taking Nick out, “there isn’t time now” she said, “I’ll just do him a ready meal from the freezer and we’ll stay here.”
Oh no you won’t! I thought. Apart from having spent almost an hour fiddling with the key safe before phoning me – time that Nick has to pay for – he looks forward so much to his outings. He sits in the same place day in, day out, can’t leave the flat without someone taking him, and it is just not fair on him for her to take the easy option.
How long have you got left”? I say, looking her in the eye.
An hour.
Great! I’ll get the ramp out if you help him on with his shoes, you’ve got plenty of time to go to Hagglers Corner, it’s five minutes away. 
I don’t know where it is she says. I explain, and draw a little map. Nick knows, in theory, where it is, we go often and we went there for lunch just a couple of days ago, but in the heat of the moment his cognitive difficulties get in the way and he’ll forget.
What about the key? She says. Ah, yes, indeed, what about the key. I have a bright idea. You take mine, lock up and put the key through the letterbox when you go, and I’ll stay here to call the emergency key safe people and I’ll use the back door key. (Bonus of having had the locks changed in the summer)
Excellent. I wave them off.

Call the key safe people. Our offices are now closed until Monday. Whaaat? At this point my lip starts to quiver and I start feeling a bit wobbly. My trip into town has receded into the same distant place as my eye test and new glasses and haircut and all the other things I never seem to get time to do, and I text my friend to say I might have to call it off. My friends are used to this. Sometimes it feels like an excuse. I promise you it’s not, in fact even the best of them has no idea how many emergencies and curveballs we actually have. It’s endless. And the crazy thing is, it still takes me by surprise because it is impossible to anticipate. When I saved the emergency call-out number for the key safe company, could I have known that it was office hours only? or that this would happen on a Saturday afternoon? Could I have known that Nick would pull two radiators off his wall? And, Nope, still not fixed. Must chase again. 

Meanwhile, I call the care providers and we agree that later Simon and I will make Nick his dinner, feed him, give him his tablets and get him ready for bed, and they will cancel their call for tonight. They’ll wait to hear from us in the morning before trying to get in to the property to do Nick’s early morning medications.

I’m writing this now having been up since 7am waiting to hear from the Adult Social Care services who are going to fit a temporary keysafe for the carers to use.
I have the spare key, and the arrangement was that I’d get a call around 7.45 and I’ll take the key down to Nick’s to use with the temp keysafe until the other one can be fixed. It’s getting on for 9.30 now – he needs his meds, I’m beginning to fret, better just get down there to him I guess. Except the contact number the repair team will use is my landline…maybe they have already done the job, fixed it, and no-one had told me?
Oh. My husband has just stumbled downstairs blearily holding his mobile. I’ve been waiting by the phone for two hours, carrying landline and mobile to the kitchen and bathroom with me just in case, and for some reason they’ve called him.

If I could just wave a magic wand to make life easier for carers and the people they care for, it would be for clearer communication procedures. So, so often I am waiting by the phone, ringing up, waiting on hold (I know I go on about this a lot but it is such a big part of the problem), chasing chasing chasing, only to find that the issue has been passed to another department who have not got my contact details and are trying to get hold of Nick on the landline that he will tell me later was ringing but that he will never answer. There have been several occasions when the case has been closed because Nick has not replied to messages and no-one has got in touch with me. And then we have to start all over again. Or, the issue has actually been dealt with but again, no-one has told me. It happens all the time and makes me feel utterly powerless. And scared for Nick, because if someone comes into the flat, say to measure the bathroom door, he doesn’t really understand who they are or what they are doing but he lets them get on with it anyway.

And there’s more.
I got to Nick’s to meet the ASC team with the new keysafe, only to find the old one open on the wall, and Nick’s regular carers in the flat feeding him his porridge. It must have taken some strength, but they had managed to get it working. Then the ASC social workers arrived, had a look and said they would fit the temporary one anyway, just in case. Carers left, and the two women were outside, I had the kettle on to make Nick a coffee while crawling around on the floor looking for his lost hearing aid, when there was loud knocking at the front door. At first I thought it was the social workers coming to say they’d finished, but no, it was Vic. Bright red face to match his t shirt, towering over me in the doorway, calling me a C***.

What did you call me?
You heard, you f***ing stupid C***
What’s the problem, Vic?  
I've had enough of this f***ng muppet and his noise. 
(But there was no noise in the flat. I took Nick's radio away six weeks ago and the TV wasn't on. The only sound was the kettle boiling. And Vic shouting.)
What noise, Vic? 
He moves closer, right into my space. 
F*** off! I’m not F**ing talkjng to you, you f***ing muppet C***

And so on. There wasn’t any reasoning with him and the sheer force of his rage was scary. He kept swearing, jabbing his fingers an inch from my eyes. 
Look Vic, I said, we’ll talk when you’ve calmed down
I don’t want to talk to you or your f***ing family, I’ve had enough of your f***ing family and that F***ing muppet in there, he’s making me mentally ill, I’m having him…”

…at which point I tried to close the door, but he was stronger and pushed it open. That’s when I got really scared. He was so close, I could feel his breath on my face and smell his sweat, and he is a big man, a big and very angry man. His rage was something you could almost see, pulsating like an electrical current. I genuinely thought he was going to hit me.
I could feel what his fist would be like when it smashed into my face, and was steeling myself in the doorway, trying to stand my ground, with Nick helpless in his chair just a few feet away. If he was going to have Nick, he would have to get to me first.
I told him I was going to call the police and he swore some more but gradually backed off and went back upstairs. Then I locked the door and phoned 101. The social workers had been outside, trying in vain to attach the temporary keysafe to the railings, I don’t know why they couldn’t do it but they couldn’t, and they had heard the shouting. Talking to them I realised I was shaking and just started to cry out of sheer shock. They will log it at once but where does that information go? Nothing has changed since the smashed door in August, and this is just getting out of hand.

So now I’m waiting for a call back from the police. Nick is oblivious. I explained to him what was happening – the key safe, why the two women were there, Vic having a go (I don’t want to scare him but he needed to know why I was upset and calling the police) but all he was really bothered about was whether he has any Mars Bars left in the cupboard and if not could I get him some more. And some tinned fruit.

It’s still only just past midday.