Happy Sad Memories

We spent Christmas at my in-laws, who are some of my favourite people in the world. Being with them is like a home from home. So why did I wake up on Christmas morning with a stone in my chest and the most indescribable sense of loss? Needing to fetch the heavy plastic tub from its box under the tree and sit cuddling it, bereft. It’s all that’s left of Nick in physical form. I know he’s gone. I know it’s ridiculous. It was probably pretty ridiculous to take him with us in the first place to spend Christmas together, but he loved Christmas and I wasn’t going to leave him on his own. This was the first one without him in the world since I was four, and grief makes you irrational. 

I’m also aware that he was so lucky to go when he did, and how hard things might have been by now, how difficult he was finding it to do so many things, and starting to dread the prospect of eating when all his life he’d been such a foodie. 

It made me think of all previous Christmases we’d had and their changing choreography as his illness began to manifest. This one I remember in particular because Nick was still living in his house in the north east and relatively independent – or so I had thought. 

Just four years ago. I wrote about it in my diary and it’s part of the memoir I’m writing about Nick and Huntington’s and how it affected our family. It was one of those near disasters where you end up having such a good time that it becomes one of the best times. It still makes me smile.

Christmas 2015

It was Nick’s turn to have the children with him for the few days after Christmas. We arranged to have a second Christmas with him and the kids, travelling straight up north after being at Simon’s mum’s. Nick said he would cook a turkey and to leave it to him. I must have been a wee bit doubtful but he’s been coping so well lately. Trouble is, while always watching out for change, I don’t seem to see it until it’s too hard to ignore.

         We drove up north on the day after Boxing Day. There had been dreadful floods throughout Yorkshire and the north west and as we crawled slowly up the A1 we saw half submerged trees in what had been fields and were now lakes. By the time we arrived we were hungry. Simon’s mum can never let us go without at least one bag full of cake, fruit, cheeses she has got in specially, whatever they won’t be eating now the guests are leaving, so we were laden with goodies: mince pies, home-made cranberry sauce, left over roasties and some little cocktail sausages. And a stick of sprouts, some carrots and a bottle of fizz. Nick had said he would provide everything else so we just needed to bring ourselves and whatever we were drinking. Finally we knocked at the door. There was great excitement to see each other and the children immediately tore into their presents while we opened the wine. Something was missing though – what? Oh, yes - where was that background hum of the delicious scent of roasting meat? (This was just before I turned vegan...)

         ‘Shall I help you get the dinner on?’ I asked Nick.

         ‘OK Sis.’

We went into the kitchen.

         ‘Where’s your turkey, Nick?’

He fumbled in the fridge for what seemed a very long time and then produced a small cardboard package. Inside was a frozen turkey roll, clearly labeled as ‘Serves 2 people.’ There were six of us.

Simon came in, ravenous after the drive and wanting to get dinner started.         ‘Shall we put the bird in the oven then Nick?’  He didn’t notice my frantic eyebrow wiggling and grimacing.

Nick looked a bit shifty. He started twiddling knobs on the cooker while I rummaged in the cupboards to put the roll – looking smaller all the time – on a roasting tray. Nick fiddled about some more with the dials. Then –

          ‘It’s not working at the moment.’

          ‘Oh-kayyyy…what about the microwave?’ Another long silence.

          ‘That’s broken.’

I’m honestly not making this up. In his mind he was going to cook a turkey banquet for six people, even though what he actually had was a tiny frozen ready meal thing and no oven or microwave. There was no point in getting exasperated, we were way beyond that. We would have to improvise.

I cut the turkey roll into shreds with a pair of scissors and we put it in a pan to fry with some onions and then added the sausages. We made bubble and squeak in another pan with the leftover roasties, chopped the carrots raw into sticks, and the kids persuaded us to forget about the sprouts altogether. Meanwhile, the adults opened another bottle. There was lots of food to go round and it was all delicious. And in the end, much more fun. We had to work together and pull what could have been a disaster into a good time – the stuff that often makes a family gathering memorable, especially at Christmas. And Nick was the host with the most. But I think we need to look at some home help for him in the New Year before someone gets poisoned.’ 

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!

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.