Kensington Gore

We went back to the dietician today to check on Nick’s weight and blow me down, not only has he put back all the weight he’d lost before Christmas, he has gained another 20lbs. Actually, more. He weighs over 13 stone now, which is a good four stone heavier than I am. No wonder he is such a bugger to push in the wheelchair.

And no wonder his shorts didn’t do up when we tried them on the other day to go out on our picnic in the nice bank holiday weather. I noticed he was getting a bit of a paunch but just thought it was the result of all the feeding up and that it was better for him to have a bit of extra weight on him – well, the feeding up has clearly done the trick a little too well, especially as Nick is now taking three different fairly heavy duty meds to calm his movements, and they are definitely working. His spasms are much less pronounced and he is sleeping a lot. I don’t really like this, the fact that he is on the super heavy-duty knock-out pills, just like Ma.

But given the choice between the motionless flat-out slumber I see him in now, and the awful constant jerking and flailing and inability to get comfortable anywhere, anytime, ever – I guess that’s the way it has to be. At least his sleep is peaceful. So he isn’t using up anything like as many calories by just being alive. 

We need to keep his weight stable, says the dietician, it’s always better for anyone with HD to have a bit of extra ballast, but that’s a lot of weight to gain in a short time and he needs to be healthy too.

So it’s back to semi skimmed milk instead of full fat, just banana with his porridge rather than cream and honey too, and although he’ll continue to have an extra tea time visit from the carers to make him a milkshake, he’ll just have that now and not the potato cakes or syrup pancakes to go with it. Job done. We have fattened him up like a prize bull. Now to put the brakes on a little.

Actually, I feel the same. After being so ill at Christmas and New Year, and then hurting my back and for two months not being able to exercise or walk for miles the way I normally would, I have gained weight too. I’ve not even been swimming as much. It has made me a bit depressed. I’m annoyed with myself for it, but at the same time, a slice of toast or two is sometimes the biggest comfort. 

Now summer is coming and my back is much better and I want to be able to wear my nice dresses again and fit into my jeans without having to undo the top button.

So we’ll both be watching our weight, which makes me smile really. For the first time in our long and colourful history, I will be my brother’s Diet Buddy.

We always like going to see the dietician as she’s in a health centre in a part of town we don’t have any other reason to go to, and the shops there remind us both of Consett. 

After leaving the clinic we went to the cool charity shop where Nick has always found new clothes, and bought him a pair of light trousers with a drawstring waist ( very handy) and to Poundland for a bucket and washing stuff so the carers can soak his clothes and bedding when he’s had an accident. Happening increasingly frequently although Nick is still either oblivious or not admitting it -  I can’t tell yet. Then we bought a load of food to make some calorie conscious meals to kick off his new regime. Semi skimmed milk, lower fat cheese and houmous, yoghurts… at the counter, paying, Nick suddenly barked at the cashier,

“Where is your toilet?”  Like a six year old, he’d sworn to me that he didn’t need to go when we were back at the health centre. Now suddenly he was desperate. The cashier looked blank. Not the sympathetic type.

Nick, I said, This is Poundland, not a public convenience! We’ll go back to the health centre and use the loo there. It's not far.

The kerbs in that area are not graded so not very good for pushing wheelchairs or prams. When that happens I might normally go round to the next chamfered kerb via the road, but this one is a dual carriageway ring road, the kind where the traffic never stops, so no. I braced myself to heave Nick up the last step onto the pavement, aware even more of his weight now that I knew exactly how heavy he was. It was the first time I had taken him out since I’d hurt my back, too.

I thought I could do it but, “I need the toilet, Sis!,” and he suddenly gave one of his unpredictable backward lurches and his arm flailed out, taking us both a bit off balance, and reader, I couldn’t hold on to him and the wheelchair tipped right over backwards, Nick landing with his legs in the air and his head in the road. I’d had a small bag of shopping over my shoulder and I must have dropped that as I tried to grab him to stop him going over, and all I could see was a smear of red on the black tarmac next to Nick’s head and I screamed.

“PLEASE! Can somebody help us!”

Two women in tabards came over from a café. Together we managed to right Nick and get him sitting up and then somehow, by the grace of God, manoeuvre him back into the chair, which now had a broken handle, one of the brakes snapped clean off by the force of his weight and strength.

“Are you all right, Nick?” I checked frantically for the source of the blood. Realising with relief that a bottle of tomato ketchup was smashed and dripping from my bag. Not blood, but good old Kensington Gore.

“I’m fine” – and he really did seem to be. As we’ve said before, he rolls like a paratrooper. But I felt horror and deep shame to have put him in that position, with his head in the road and cars whizzing past at 40 miles an hour. The bucket was broken,  I’d had it hanging by the handle onto the wheelchair. Our shopping was squished. My hands and knee were grazed where I'd tried to get between brother and hard ground as the chair tipped over. But Nick was fine. Not only that but he had managed not to wee himself, which is almost more than you could say about me under the circumstances.

Anyway, thank goodness we were right next to the health centre. Mission accomplished, toileted, wiped down and checked over, we drove back home and installed Nick in his chair with a drink while I unpacked the remains of the shopping. I made him some lunch. Omelette and mashed veg, followed by banana and ice cream. He yummed it all. 

He insisted that he felt fine and I went back later to check and make sure that he really was, and he was happily watching rugby on TV and asking me to hang up his new trousers. He was also looking forward to trying the low fat yoghurts we’d bought, miraculously unscathed after their adventure, and now washed clean of tomato ketchup and pumpkin soup.

The wonder of the decreased cognitive awareness and poor short-term memory!

Thank all our stars he was OK and no bones broken or any trauma as far as anyone could tell. 

But I was in a state of shock for the rest of the day. Once again, I see that I can't do some things on my own any longer and need to recognise that. But I'm not sure where we go from here. 

Cake and Fine Wines

I give the carers a lot of flak for being careless, but they do often see things on a macro level that I don’t.

Just before Christmas, one of the regulars asked if we’d thought about a reusable coffee cup with a lid, as Nick was spilling so many of his drinks in the plastic beakers I’d bought him.

“It’s not time yet!” was my knee jerk reaction, but sadly, it is. I just didn’t want to see it. The time has come for him to need a lidded cup, with a handle, and to drink from a straw.

Since the sobering dietician visit, we’ve been putting the build-up plan into action. Nick is getting an extra tea call with carers coming in around 6 when he wakes from his nap, to make him a hot chocolate or a milkshake, and a small snack. My son bought him for Christmas a cute lidded cup from the local cats’ shelter charity, with cat eyes on the side, to distinguish from the sturdy travel mug he now uses for his wine.

Lovely Helen the PA bought him a reusable metal straw, which is a genius thing, and it’s all made a difference – to his clothes, his table top and all the things on it which were frequently awash and corrugated with water wear, and of course to the amount he actually takes in.

Christmas has given him licence to eat, drink and be merry, and he’s steaming through all the chocolates, puddings and cakes that he’s been given. (I’ve hidden the bottles of wine for supervised visits and special occasions…) The carers have instructions to put cream and honey on his morning porridge and I dollop extra cheese and butter on his dinners. He's having a hot chocolate in the mornings too. At this rate he’ll have put on half a stone!

It’s still scary, though, seeing the changes. I kept finding rogue tablets on the floor and blaming the carers (many of them ARE careless, it has to be said) but on the occasions when Simon or I give him his meds, it’s increasingly difficult for him to swallow them. And there are a lot, so it’s too easy for one to be ejected and spat out across the room and you might be too busy patting him on the back to prevent choking to notice.

We saw the GP about six weeks ago to discuss changing to liquid medication, and this was referred to the pharmacist and then in turn to the neurology specialist. It was about time we had a review anyway.

Nick had an appointment to see him next week, so it felt like a good start to the new year with perhaps an adjustment to the meds, because Nick’s movements and swallowing are clearly getting worse, and I felt very relieved to think he’d be in safe hands there.

Yesterday we got a letter from the GP saying that there had been some confusion over the neurology appointment and that they were not expecting to see Nick next week after all, as they only had him down as needing a yearly review from now on.

I don’t know if anyone not affected by HD can even begin to understand the horror of this. Huntington’s is an aggressive, progressive, degenerative illness, where deterioration of all functions happens almost before your eyes – body, mind, everything. Sometimes a merciful plateau for months on end, then wham! a relentless downhill slalom in a matter of weeks.

So imagine a neurological specialist and clinician who maybe knows more about the ravages of the disease than anyone, only expecting to see an HD patient once a year. Does that mean they’ve given up? That there’s nothing more they can do? Or that their record keeping is not quite as vorsprung durch technik as you would have hoped for.

I’m sure it’s a clerical error. I’m pretty sure it’s the Nick factor striking again. But it has chilled my blood.

However, it is his birthday at the end of the week and we’re going to have a party. There will be wine, cake, whatever he fancies, and some of the people who love him.

I’m still wobbly-legged and weedy after a second bout of the flu, and have not much spare energy for organising, and half of the people on his invitation wish list are out of town or out of touch, and Vic the nutty neighbour has been banging on the ceiling again according to Simon; but there will be a party come what may. 

With cake and fine wines! Nick used to love that film. And just the thought of saying feck it, and having a celebration of where we are now, despite all the changes and the fear that goes alongside, is a strangely cheering thing.

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!

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.

Things Can Only Get....Different

Ah, the hope and excitement of that song “Things Can Only Get Better” when Tony Blair was elected in 1994. I can remember exactly where I was, can you? Sitting on the dry grass outside the People’s Palace in Glasgow with friends, one of whom had been up half the night counting votes. We were so excited to be part of a new generation of youth and hope, and like so many others, we really believed that things were going to get better.

“Can you remember where you were and what you were doing on that day?” I ask Nick, half anticipating the answer.  I really want him to remember things, to know what I’m talking about, just keep that flame of connection and engagement alive, but his memory is so fucked up these days. It’s too big a question for him.

“I’m not really sure.”  

Things are not going to get better, that’s plain. Politically, well, that remains to be seen because this is not a blog about Brexit! But in terms of health and mobility, memory and cognitive function, it’s getting a whole lot worse.

Yet I am (mostly) optimistic. There is still so much to be glad about. Lately, I have been making a nightly review of the day and all the things to feel grateful for, and to my surprise, many of these revolve around Nick. The fact that he’s still here at all, that he is such a trooper, so stoic in the face of his illness and for all that life has dealt him, such a cheerful soul. He drives me absolutely potty sometimes but his courage just knocks me sideways.

He has had his new chair for a week, but the physio and ergonomic specialist who were supposed to be talking through how to use it had to cancel their appointment because of last week’s snow. So we’ve probably been using it all wrong but he’s been whizzing about in it very happily and says it’s really comfortable. I am not sure what to think – the castors that are supposed to lock it into position seem to come unlocked with the force of Nick’s spasms, so he sometimes goes shooting across the room. The other day I found him stuck in a corner like a big capsized beetle, legs flailing, dangerously close to knocking over the TV and unable to move himself forwards.

With luck, we will sort some of these issues out when the physio visits later today, but then we have the problem of the carers… The plan is that they will lock Nick into place at his table at mealtimes, prepare and serve a meal, make sure he is able to eat it safely and help him if necessary, wait for him to finish and then move and lock him back into optimum position to watch TV. Hmmm.

Yesterday I had left my usual instructions in the daily menu book. 

“A microwaved ready meal of Nick’s choice” was the dinner suggestion. After doing a massive shop at the weekend, there were loads of microwave dinners in the freezer, which the carers are normally more than happy to prepare as it saves them the faff of cooking anything from scratch – and I don’t expect them to, they don't have enough time and that’s my job. Eating has become yet more difficult lately, he can't manage more than a small serving and I'm even having to cut soft pasta up with scissors and feed it to him.

But I was a bit surprised to see what they had given him – a two person portion of sweet potato mash that I’d put right at the back of the vegetable chiller in the fridge, thinking it would go well with some soft fish or mince next time I came in to cook for him. Enough for two, maybe three future meals. 

But the carers (who perversely, can’t seem to find things I’ve very carefully laid out in plain view) had found it and without asking him for his choice, just served it up to him on its own in a bowl, no fish, no nothing. And guess what? He had absolutely yummed it. First thing he's managed to eat on his own, and finish, in quite a while.  

So, honestly, what do I know???

I don't hold out a lot of hope for their ability to manouevre the chair correctly. I think we have a rocky old road ahead there. But maybe in some weird unfathomable way, they have an instinct for what could work, and maybe I need to let go of my control freak reins a little and trust that they can do it. 

Things may not be going to get better but I tell you what, I live and learn.

Gratitude

Last week I started a deliberate project of being thankful for small things, because so many of the big things seemed out of my hands.

Also, I just got so sick of being permanently angry and complaining, so worn down by continual difficulties and obstacles, that I felt utterly defeated. What was the point of all this effort? 

I just started expecting the worst. When that happens, you become brittle, angry and permanently on the defensive. Even when you truly believe that the next transaction will go smoothly, it’s as if you give off an invisible signal inviting trouble. I can’t help thinking that the expectation of conflict can become a self-fulfilling prophecy.

There had to be another way to deal with it all. 

I made this list of reasons to be grateful to Nick’s carers, and it was an interesting thing to do because I started appreciating them more.

I am grateful that they come three times a day to give Nick his tablets so he gets the regular medication he needs.

I am grateful that they nearly always make his bed nicely.

I am grateful that their visits break up his day when he might otherwise be alone.

I am grateful that they feed the cat.

I am grateful that they are (mostly) reading the menu book now and following the food preparation requests.

I am grateful that they do the washing up and vacuum the carpet.

I am grateful that they are starting to put card and plastics etc. in the recycling bag.

I am grateful that it takes some of the load off my shoulders.

I am grateful that Nick seems to like them.

I am grateful that things seem to be gradually improving.

Have they suddenly picked up their feet and transformed magically overnight? No, not really. When I visited yesterday evening they had not switched off the washing machine or taken the damp clothes out and hang them to dry, as politely requested the night before. 

They seem to have a problem with giving Nick a pudding (which I have called by various names, “dessert” “sweet” and even specifically named, “chocolate mousse” or “trifle”, all to no avail) 
It just seems to be an alien concept to them.

He has developed a really sweet tooth over the last couple of years and craves chocolate; left to his own devices he would polish off a four-pack of Snickers bars after tea every night. It’s weird for me to see this when chocolate bought for the children used to sit mouldering in his cupboards for months at a time because he just wasn’t bothered himself. Now he loves it, but those big chocolate bars are a choking hazard as well as terrible for his teeth.

Luckily he also loves sweet, creamy desserts, which are actually something that dieticians recommend for HD because they are calorific and easier to swallow.

So we buy lots of these and I write it in the menu book every time asking the carers to give him a dessert after his main meal but it’s hit or miss whether he gets something or not.

One day last week I saw the lunch that they had prepared for Nick with a slice of blackcurrant cheesecake nestled carefully in the same bowl as his fish pie and chopped broccoli.

I had to add something to the list:

Just when I thought I had seen it all, I am grateful to the carers for surprising me.

It's hard to swallow

The speech and swallowing therapist came to see us today. Despite all the excesses of Christmas, Nick has been having another phase of not eating.

Too often lately I’ve come in during the morning to find last night’s dinner still plated up in the kitchen or a soggy ready meal taken out of the freezer the night before but not touched.

What has he had to eat, then? As if we couldn’t guess. No food, but on the counter there’s an empty wine box alongside the uneaten dinner.

It’s not just about the wine, though – he says that he’s been finding it much harder to chew or swallow food, and this is alarming.

So with the therapist we look at what sorts of things might be easier for him to eat. Goodbye, couscous salad and coleslaw (too many little bits or rogue pieces that could catch in his throat and make him cough) hello mushy peas and mashed potato. No more satsumas to give him the pip, tinned mandarins or peaches instead. I am adamant that he needs fruit and veg, it’s just going to require a bit more thought and preparation time from now on.

Nick will also need some help spooning or cutting up his food as even with the good grip cutlery it's getting harder for him to manage. On a good day it's OK, on a bad day he needs someone to help him. 

The therapist said that she would contact his social worker to recommend that carers have more time allotted in order to help him to prepare and if necessary, feed him his meals. 

However, the mandate for extending the current timings in the care package may take a while so she will write directly to the care agency manager to make sure carers understand and can take extra care when preparing food for him. 

The manager himself seems really on it and quite understanding about the problems around eating; he says he’s had lots of experience with HD. 

The carers themselves though are another matter.

Today I popped in at lunchtime as the carer was writing her notes. We chatted briefly, then, 

“Did you do him any lunch?” I asked. Sometimes Nick tells them not to bother because “my sister is coming to do it” (even when I’m not)

She gestured to an unappetising looking pasty on the counter. Just slapped onto a plate on its own, straight out of the freezer and still a bit icy. 

"Is that it?" I said. (Like, Seriously, dude?) 

She looked at me with surprise and utter incomprehension. 

You know those times when you just have to rein in your exasperation because the person really hasn’t got a clue what the problem is? One of those. Because on the whiteboard opposite and on a dayglo post-it note stuck in the care plan are reminders to carers to  chop food up into small pieces, and please include fruit or soft veg (all ready prepared in the fridge) to make it appealing and nutritious. How hard can it frigging be??

Simon says I have to get real and accept that not everyone (not most people in fact) think like me and that they are paid the minimum wage to do the bare minimum amount in the small time they have got. They get a pasty out of the freezer, job done, that's Nick's lunch. On to the next client. But I did the same job once upon a time and I always went the extra yard. Why can't they? 

Why can't they use some f***ing common sense and at least defrost the bloody thing in the microwave? How hard would it be to look in the fridge and see the potato salad or the cooked broccoli or the microwavable baked beans? 

And while they're at it, how hard would it f***ing be to wipe the kitchen floor? When I arrived, Nick had already been in there for an early slug of wine and spilled quite a lot of it in the process. Are they not supposed to look out for trip and slip hazards??? 

Nick is so vulnerable and they just don't seem to get it. 

And yet they are coming as and when they're supposed to, they are kind enough as far as I can see, and until the council pulls its finger out with the possibility of Direct Payments we don't have much choice in the matter. 

It's just not the way I would wish things to be done, and Nick is too polite or too foggy headed or too pissed to put up any objection.

I feel cranky, upset, and just throughly infuriated.