The Nanny State

“Now, I’m just going to pop next door to hang up the washing, and then I’ll come back and see what you’d like for dinner”

“Nick, I’m going to phone the council now to ask about the repairs”

“I’m going to blend that chicken and bacon pasta a bit to make it easier to eat, and I’m slicing up some avocado too, for some extra calories”

“I’m just writing your menu for tomorrow and then we’ll do your online shop”

“I’m throwing away these holey socks, Nick, and finding you some better ones.”

And so on.

Do you do this too, I wonder? Go through the day describing exactly what you’re doing and what you’re about to do next. It's the Nanny State all right - the state of being a constant nanny. 

I know it’s not just me as I saw someone else at it today. One of my dementia clients lives with her widowed daughter who is her primary carer, and when I arrived this morning to take the mum out, the daughter was giving a running commentary about the washing she was doing, (“your favourite blue cardigan is in the wash as there was marmalade on the sleeve cuffs“ and “I’m just going upstairs to brush my teeth and then Mel will help you to get ready to go out”)

It seems to be second nature for carers. Why do we do it? 

I suppose because it’s important to try to include the person in their care decisions, even when they don’t have much capacity to choose, so that there is some sense of things being done in partnership. 

Sometimes Nick looks at me out of the corner of his eye while I’m busying myself about his flat, picking up his washing and opening the post, checking the freezer to see what food is left in there and what I might need to replenish, seeing how much wine is left in the box. It's all for him, but I'm still messing around with his things in his space and ultimately, totally undermining his independence. 

The only way I can lessen that a wee bit is to give the running commentary so I'm an ally, not a cat burglar. It's all done with the best intentions, but those can run away with you in the name of doing what you think is the right thing. And honestly, I do want to tell myself to shut up sometimes. 

Food for Thought

I have been pressing for ages for Nick’s care provider to have Huntington’s awareness training for their staff. They can have free specialist training, the council have said they’ll foot the bill for the staff time, it’s professional development, surely a total no brainer?

It’s been recommended all along by the speech and swallowing specialist and the NHS neuro team, and they said they’d willingly do a free session for the carers any time they like. Diana, our regional advisor from HDA, has also offered to do a session for a minimal cost, but the care manager has been dragging his feet.

Meanwhile, I’ve continued to wring my hands over their constant misdemeanours: kitchen surfaces awash with spilled wine and the bathroom floor unspeakable after the carers have just left; microwaved meals heated up on “Defrost”; food I’d put out for Nick and labeled going ignored: forgetting / not bothering to give Nick a pudding or gravy as requested, to increase his calorie intake and make it easier to swallow; presenting him with an entire chocolate cheesecake for dinner; feeding him while standing over him looking bored, spoon in one hand and checking their phone with the other.

Good nutrition is one thing but basic common sense is surely the most crucial thing of all. I’ve been a carer myself and you do need to be on the alert all the time, checking your client's signs of well-being from minute to minute like a cut rate Sherlock Holmes, with eyes in the back of your head for an ongoing risk assessment. But they simply don’t seem to notice the glaringly obvious.

Anyway, to my amazement they finally had the training this week and all the carers who Nick currently sees were there.

Afterwards I got a memo telling me that I am not buying the right kind of food for Nick as he shouldn’t be eating pasta at all (his favourite) but needs soft, fork-mashable foods that are easy to swallow. And a high calorie diet with lots of added butter and cheese, so please make sure that they are available. 

Oh, right! I was quite indignant that they should have two hours of HD awareness and suddenly they’re the experts. But at the same time I was really pleased that at last perhaps they get it, and that they want to be involved more directly in Nick’s care. We’ll see how things go from now on, but I do have some hopes that these niggles will start to improve. I’d like to think we can work together rather than me always having to tell them what to do, and them feeling wrong footed.

It also reminded me that I don’t actually know it all, and in my quest to protect Nick and look after his health and nutrition, there will be things that I’ve missed too. Sometimes it takes a fresh eye, or someone fresh from training, to see these things and point them out. They’re right about the pasta – I’ve been noticing for a while that it is getting much harder for him to eat it, and it’s me who’s been resisting giving him a diet of mashed potato and pureed food because I can’t bear its implications. There’s no looking back from the puree, is there, not unless you’re a baby.

With this in mind, I had to laugh today. Nick went for lunch with one of the friends who occasionally takes him out, and they went to a pub. She is sensible and knows all about the importance of nutrition and what not to feed him in case of choking. She has seen his struggles to eat and doesn't flinch at having to help him. 

“What did you have to eat?” I asked him later, when he was telling me what a good time he’d had.

“I had ham, egg and chips” he said.

“Goodness, darling!” I said. “Did you manage that Ok?”

My friend later confirmed that he had eaten the whole lot, and all on his own, every bite. It took him half an hour but it's just what he wanted. Where there’s a will, there’s a way, I guess, and it looks as if it’s not all just mashed potato quite yet.

Asking for Help.

Why do I find it so hard?

The other week, when our freezer broke down and we suddenly had half a supermarket full of rapidly melting food, I went straight into sort-it-out mode, mentally calculating who we knew with a big freezer, who might be prepared to give us some shelf space, who lived locally enough to transport it all and who wasn’t on holiday or having their own nervous breakdown.

Underneath that, calculating who, when the oven chips are really down, I could turn to for unconditional support. It was frightening, because I couldn’t think of many.

Being a carer for the past year and a bit has made me insular. My focus has been so much on Nick, and outside that I’m often too tired or too preoccupied to socialise much and try as I might my world has shrunk to a tiny core of family and friends, many of whom I hardly get to see either.

If we need help, the first point of call is usually some kind of organisation - even though these are often hard to access, lengthy in process, unavailable, unhelpful, or altogether useless. 

But the thing that has shaken me and left a lasting scar, is the loss of trust. We had so many people offering to help before Nick came to live here, many of them his old friends; where are they now? I have written about this before but the hurt is deep. People who saw Nick once and then backed off. At least one friend was honest when he said he was scared, but the rest just voted with their feet – and their silence. A lot of people don’t know how to deal with Nick – this adult, twitching and dribbling in an adapted chair with an alarm pendant round his neck. They can’t understand what he’s saying, and on a bad day he won’t seem to know you’re there or be able to talk much at all. We have friends who are brilliant with him in company but I know would feel uncomfortable being on their own with him because they don’t know what to do. It’s all very well for me to say, “Oh, you don’t have to do anything, just be there”, but I am used to it and even then it never really stops being shocking, and difficult.

So I have learned to be untrusting, to believe that there is very little support and that in the end it is all down to me.

It’s impossible to do it all alone though. Having a break while Nick was on his holiday gave me the room to see things a bit more clearly.

He had a marvellous time, by the way, completely delighted with it all, and I think the time away really did him good.

But we came back from our lovely holidays to find the merde really hitting the fan at high speed. Now Nick has not just one nutty neighbour, but two. I’ve said something about this on Twitter already and am not going to go into any more details right now, but things are weird. I am feeling a bit out of my depth, and this morning I rang a couple of friends just to talk to someone and ask for their advice.

They couldn’t help with the situation except to listen, but both offered practical support – a bit of shopping, calling in to see Nick at a time when I won’t be around, taking him to the optician - that will actually be a godsend.

I’ve been quite amazed by their responses, and it has taught me this: that the voice running round in my head telling me that no-one cares, no-one will help, I can’t bother them, everyone’s too busy, etc etc, may have a point, but it’s not the only truth.

I have to keep asking for help and support – it’s not easy when someone says no, or doesn’t answer your call, but you can only try and it’s worth a try.

Oh, and the broken freezer – I clenched my guts and did a little round robin on Whatsapp, and four people immediately offered space in theirs, including someone who was on holiday but said they’d arrange it with their neighbour. None of these people are close friends, but having the courage to ask does seem to inspire a connection and has made us that little bit closer. My sense of trust is still wounded and a bit wobbly, but our fish fingers and veggie burgers are intact, and I remind myself to keep opening up and not trying to do every little thing on my own.

Biting the hand that feeds, Baby.

I really, really, really need new glasses. If you are as short sighted as me, these don't come cheap, and this has brought on feelings of panic and mutiny, because as a carer, I seem to fall between the cracks for help with the costs.

So let us get this straight.

I am on Carers’ Allowance, which is nearly £10 a week less than JSA, Universal Credit or whatever is currently being rolled out, as they say, in your area. Yet JSA would qualify me for free or heavily discounted optical and dental treatment, and Carers' Allowance does not.

To qualify for Carers’ Allowance in the first place you need to be actively caring for someone for 35 hours or more a week, which considerably more time than someone on JSA is expected to spend looking for work.

True, no sanctions or interviews or mandatory job experience at Poundland for me, or having to prove what I have done every minute of the day to seek gainful employment; although try asking most carers to account for each hour they have spent and everything they have done in a typical week of caring and if they had to log all that to qualify for their weekly payment you would probably break the internet. The whole system would explode! And who at the DWP would have time to read it?

  

In order to be eligible for Carers’ Allowance in the first place, my income had to be under the limit of £116 a week (now £120) for the two months before applying. 

It was a relief in a way to drop some hours as the combination of the four-day week I’d been doing with the sudden addition of 35 hours (at a low estimate) of unexpected brother care, was a killer. 

I was waking up panicking and fighting for breath from the sheer shock of it all. I had become a bona fide carer almost overnight, but could not be officially recognised as such until I stopped earning money.

It felt like a real catch 22 to have to agree to be poorer in order to continue doing a new job that I’d not applied for or expected to be doing with such a high level of responsibility, with no training, and essentially unpaid apart from this small stipend.

But I was glad to have it too, even while the catch 22 was staring me in the face.  If I was going to be doing 35 + hours a week looking after Nick, I might as well get some kind of acknowledgment and regular payment for it, even if I then couldn’t continue to do my job the way I had been or get paid a decent wage.

The absolute maximum you can earn as a carer doing 35+ hours of support, plus working part-time, is £185 a week. Bear in mind that the average weekly wage is £520. According to Paul Lewis the financial broadcaster, when you take into account all the hours worked by the average carer, this is not even approaching minimum wage, with no legal access to earning more.

I understand why you’d need to put a limit on hours worked in addition to your caring role but why the earnings cap? Why can’t you work for sixteen hours at a good rate? 
Unless you’re very lucky with your employer, doing such a relatively small number of hours tends to mean working at minimum wage and even zero contracts.

Why force carers, who are saving the government and NHS approximately £60 billion a year, into badly paid work? It seems particularly cruel.

Why can’t we work smarter for a limited number of hours at a good job that would help support us, the person we care for and our families, and help us from being a burden on the state?

A limit of hours worked AND on earnings is fundamentally a poverty cap and suggests that where this legislation is involved, carers are held in contempt.

  

I was never a high earner apart from (ironically) a short stint doing research at the DWP, and I’m used to living in a fairly low-impact, resourceful style, and have always felt abundant in other ways. 
But these days as a carer I realise I’m earning below the official poverty level and I bet I’m not alone.  

According to a recent interview with Caroline Dinenage, Minister of State for Health and Social Care, there is "no more financial help available" for carers. The government pot is too stretched. 
OK. But why, if carers are condemned to a low income not commensurate with the amount of work they do, are we not at least given help with the costs of dental treatment and glasses? 
Seriously, baby. I can’t be the only carer who is short sighted with astigmatism and English teeth. 

I am allowed a free eye test, yippee, but I could equally have one of those if I pick up the right coupon from the supermarket. And yes, I know there is a low income voucher scheme if you apply to the NHS through form HSC1, but it still feels insulting to make carers jump through yet another sodding hoop to fill in yet another form and justify their existence.  

I mean real help towards the things that actually matter – eyesight, teeth – that can cost a chunk of your money if you are not deemed exempted. Carers need to keep well, and most of us need to drive, (and to be able to see to fill in those endless sodding forms) and eyes and teeth need maintenance especially for the high percentage of older carers. 

Why can’t that be acknowledged with some practical support?

And as for a massage or some physio for my permanently aching back from lugging a wheelchair in and out of the car and a thousand other little daily tribulations, tell me that other carers don’t long for these and I won’t believe you. 
We need to stand up for our rights.

With or without you

What a week this has been. Our freezer suddenly stopped working after I’d just done a mahoosive shop and filled it with goodies for the lads. I spent a considerable part of the last few days trying to find someone to take all the fish, chicken, ice cream etc before it melted and had to be thrown away, someone to repair it who could actually come out this month (turns out that the heatwave has had a lot of freezers not being able to cope and throwing in the icy towel) and having huge cook ups of all the defrosting veg and fruit and other delicacies that were already too far gone to save.

This coincided with our son going on holiday, beautifully timed as when he’s home there are normally at least three permanently ravenous teenagers hanging around the house and raiding the fridge at all hours, and where were they when we needed them?

And my brother’s upstairs neighbour just lost the plot. He started coming downstairs and trying to get into the flat, even coming round the back when Nick had the door open, raging in just his pants and bright red in the face. At first I did the usual and tried to appease him but he was too mad and on Tuesday morning he went for me in the doorway, spitting and swearing like some demon in the Bible, and tried to shove me out of the way so he could get to Nick.

Thank God that two big male carers were there and faced him down but for the first time I was really physically afraid. We kept the doors locked and I spent a lot of the week taking Nick out and bringing him round to ours to get him out of the way; ironic that his TV has stopped working and the radio will only go up to a certain volume anyway so he hadn’t even had the music on loud, but we weren’t taking any chances. We were frightened. I was frightened of what he might do.

Meanwhile, the wet room is finished and it’s great, but someone had come in unannounced and painted all the woodwork and doors with white gloss paint, and Nick, who bumps from wall to wall like a fly trapped in a box, had bashed against it and got it all over his clothes. 

And the fancy new super-loo, which I’d been told hadn’t even been ordered yet, arrived out of the blue and the fitters came to install it and of course the drilling and plumbing noises sent Vic crazy and there were bangings on the ceiling and screaming at the front door.

And also…well, a lot of other things happened but oh, in so many ways this was just a normal week. Crisis after crisis, quick thinking to be done just minute after minute with continuing threads to pick up and more unexpected things to deal with every single day. Trouble shooting, because there always seems to be some kind of trouble or disturbance around Nick. Is it him or is it Huntington’s? Do other people have this? I do wonder.

And all week the knowledge that Nick’s holiday is approaching, and now it’s today. We are picking him up in an hour and taking him to the coast where he will spend a week’s short break at one of the wonderful Revitalise centres specifically catering for adults with complex needs. We were very fortunate to get some funding towards this otherwise there’s no way we could have done it - do you have any idea how much these places cost?! 

Though for good reason, I must say, as they have been so thorough in finding out about Nick’s needs in advance, who he is as a person not a service user, covering every detail. What kind of room he’d like, meal preferences, activities and daily habits. 

I went to check it out and felt very reassured, the staff were plainly salt of the earth and loved their job, and there was a sense of inclusion, efficiency and warmth that you just can’t fake. I wouldn’t feel at all happy to leave Nick with his carers at home for more than a couple of days because they don’t feed him properly, they don’t clean up properly, some of them don’t even talk to him but half the time are standing in the kitchen looking at their phones; there are so many things they miss, and for all their bumbling good-heartedness they’re not really focussed on him.

But here I know they’re going to look after him.

He says he is really looking forward to it, and I am so happy at the thought of him being really well looked after, meeting new people, going on trips and having slap up meals and a change of scene. There is only so much we can do for him when it’s just us and I’m constantly struggling with the endlessness of all the day to day problems that keep on surfacing like a demonic game of whack-a-mole, never ever totally dealt with before the next one pops up.

And through so much of this hot summer he’s been sweltering indoors with the windows shut because we’re scared of the neighbour, struggling with all the tech that he relies on so heavily but as a result keeps breaking down, and unable to get out unless someone takes him. Never complaining. I want him to have some carefree time and some fun.

It feels like an adventure, the kind that we used to have when we were little and our parents would wake us up early to sleep again in the car on the early morning drive to the seaside. We’d have fried egg sandwiches made by our gran, wrapped in tinfoil, cold and greasy by the time we stopped for tea brewed by dad on a little gas burner but still delicious, tasting of holidays. It feels good to be going somewhere together again, and I think the anticipation will help mitigate the terrible discomfort he feels while travelling, stuck in the same position for too long. 

And when we’ve dropped him off and waved goodbye? I don’t know what to do with the idea of freedom. It will be like the time we waved the boy off on his first school trip – light-headed, wonderful to be just us again with no parental duties, but also wondering what’s wrong with this picture.

However much I sometimes feel that this caring business and this illness has dropped a bomb on my life, Nick has changed everything and I don’t know if I would change it back. 

This year has been nightmarish. Watching him lose so much, physically and mentally unravelling in front of our eyes, just the way Ma did, has been horrible. It's been a huge strain on us all and we're exhausted. 

So I am looking forward to a few days of freedom, of just unfurling my wings a little. The thought of it already feels like the anticipation of taking off a heavy rucksack. But I am really going to miss him.

Isn’t he good?

Out and about with bro  in this gorgeous weather, we have taken him to a few summer fetes and local music festivals and it’s amazing how smoothly a wheelchair parts a path through the crowds. Nick has a ringside seat from the top of a hill or near the side of the stage and people are unfailingly smiley and kind as we push our way over the grass to a good spot. I remember something like this reaction when I used to push a pram in public places with a young baby, that sudden benign gaze from total strangers and a willingness to accommodate. 

It really wasn’t like that when Nick was still walking, because that was scary and unpredictable; I was always afraid that he would fall over, and of course with the classic HD lurch, most people assumed he was drunk and to be avoided.

Now somehow he is safe. If anyone assumes anything now, it’s usually that he has cerebral palsy; it looks pretty similar if you’re not in the know. There are a few stares, but mostly it’s a friendly nod and a smile as we pass by.

He even gets a few women talking to him, which always makes me grin when I think of the lady-killer reputation he used to have.

“You’ve still got it, bro!”

Actually, I’m quite disarmed by the kindness we see around us. It’s good to think that strangers might look at Nick and see a person enjoying a summer afternoon in the park watching a band like anyone else, not just an invalid being pushed about in a wheelchair.

But it can make me uneasy too. There’s nearly always a drunk bloke who wants to come over and shake his hand – why? Because they think they were at school together? Because he looks like a good egg? Or because he’s in a wheelchair and obviously impaired and has actually had the balls to come out and show himself in the outside world? Do they think it’s their good deed for the day or what? 
Or in their cups do they recognise another fragile soul who they can connect with? I wonder.

These encounters are pretty one-sided too, as Nick is so deaf that he can’t usually hear a word the other person is saying so he just tends to nod blankly, eyes not quite focussed, and that adds to the weirdness of them being so keen to talk to him.

I have had a few people asking me what’s wrong with him, and surprisingly many of them have heard of Huntington’s Disease, and that has to be a good thing.

But I don’t ever want him to feel like an exhibit or the cripple in the corner and I guess I am protective in these situations. Watchful.

Today I was approached by a woman who said she'd seen us before, and wasn't it a shame,

"Ahh - the poor thing." 

Nick was drinking a glass of wine in a plastic cup, in his best shirt, with the sun on his face. He looked happy. "He's so quiet," she continued, "isn't he good?"

What can you possibly say to that? Well, a lot, as you can imagine, but I was a bit gobsmacked. Again it reminded me of people from an older generation when my son was little who would ask if he was a good baby. I came to realise they meant did he sleep through the night. 

"No, he doesn't sleep a wink" I'd say, "but he's the best baby in the world!"

I don't think the woman is even listening as she clucks on, but I turn back to her and say, "He's gooder than you can possibly imagine. He's had an amazing life and it's not over yet. He's the best brother in the world." 

Voice of the Donkey

Not had time or head space to write for a while – things keep happening and being able to sit down to record my thoughts at any kind of leisure has been too much of a luxury.

But that’s why I started writing a blog in the first place, because things keep happening and I needed to keep track. So here we are, midnight, way past my bedtime on a day when I could happily have gone back to bed first thing this morning and slept for a week.

Earlier this week I was interviewed for Radio 4’s Money Box Live programme about the financial impact of being a carer. 

They asked what I did for Nick and I trotted out a list off the top of my head, thinking to myself that it sounded like nothing and feeling the usual guilt that I should be doing more and am not there for him 24/7.

People often ask if he lives with us and I still feel bad that he doesn’t – even though our house is just not big enough for the both of us, and when he did stay with us on first arriving in Sheffield last year, he fell down our stairs and broke his collarbone within two days. 

So no, he doesn’t live with us, but we see him every day and I probably spend at least three or four hours a day dealing with his paperwork, money, shopping, appointments, blah blah blah. But some people spend their entire life doing that for the person they care for; I know an eighty year old who has perhaps two hours off each day if she's lucky, and many live-in carers report a 90 hour week. 

What I do for Nick in comparison feels like nothing much - and it feels like an endless mountain. 

It's hard to explain how the time just sucks into a vortex when you're looking after someone else like this. 

And I simply could not have expected the level of responsibility and care I would be taking on. 

No-one does, I’m sure. It soon starts to feel normal though, so you take on more, until suddenly you are like one of those poor Greek donkeys staggering under an impossible weight. I used to cry when I saw them and try to get their owners to relieve the load. Of course they would just laugh and pile on another brick. “The donkey doesn’t feel it!” 
Now that donkey is me.

On the radio interview there was only time to include a small part of my duties, just the tip of the iceberg really, and of course so much of what you’ll do as a carer is often unquantifiable. But viewed from the outside, I saw that other people really did think it was a lot. 

Well, it's all relative (literally so)

But it has made me think. It has made me more proud of myself, and more determined to do a good job for Nick. 

But it has made me more angry, and more determined to speak out about carers' rights, keep lobbying for more recognition (and god knows, more financial support) and keep connecting with other people whether they are carers themselves or not. It can be a lonely old business and we need to talk to each other. I might feel like it a lot of the time but I refuse to be an Eeyore. Us donkeys need to stick together - go on with our work but make sure we raise our collective voice, echoing across the hillsides. Let me hear you, brothers and sisters!

The Donkey - GK Chesterton