The Nightmare Relation

I’ve been having a spot of bother with Nick’s carers.

Over the past week their time-keeping, carelessness and sheer lack of comprehension suddenly reached a crescendo of crapness.

I’ve been in a state of mild exasperation with them ever since Christmas, when they arrived on days we’d cancelled them and didn’t come when we hadn’t.  This week, though, was a new low.  

I made four complaints and two “you really wouldn’t want to be the person on the other end of the line” phone calls to management, as my dial turned rapidly from slightly exasperated all the way up to raging madwoman.

I have not mentioned the CQC yet but it is up my sleeve.

When I worked as a carer, you’d occasionally cross paths with the Nightmare Relation. The Nightmare Relation was usually a daughter or sibling who supervised your client’s care. They generally lived locally enough to visit their relative most days and survey the state of their care provision, and they were rarely happy with what they saw.

You might never actually meet this person but they would leave little notes reminding you to do this and do that and here’s the special brush to clean around the taps and please make sure Mother has a proper wash and don’t put sugar in her tea after 4pm and only use the blue towel and can you take every bit of skin off the tomato. On the days when my time with that client was precisely fifteen minutes, I’d look at these lists and give a hollow laugh.

Admittedly I would do my absolute best to make them comfortable and safe but when you barely have time to say hello, the fine-tuning can fall by the wayside and it’s easier to leave the notes for someone else to deal with.

Now that list-leaving relative is me.

It doesn’t help that I have done that job and know all about cutting corners – say you’re supposed to give someone their tablets in the morning then again at lunch four hours later, but that will mean doubling back and going right out of your way, so if you just go back a bit earlier while you’re still in the area you can save yourself a bit of time…

I never did that myself but saw it happen a lot. It’s been happening with Nick to the point that the other day he was given his morning medications at 9am and his “lunchtime” ones an hour and a half later!

I find this out through reading the notes. Nick seems to be helpless in the face of their insistence and this makes me even madder because it’s his house and they are walking into his private space and overriding his objections to something he doesn’t want them to do. I think this is very close to abuse.

They are supposed to ring the buzzer when they arrive, even though they let themselves in with the key from the keysafe, because this is good practice and as Nick is so deaf he will not hear them arriving otherwise.  But they continue to waltz in unannounced. They leave Nick’s front door open and unlocked with the main street door wedged open and the keysafe code visible for all and sundry to see.

Those little notices: I have different coloured marker pens and post-it notes in dazzling dayglo. I leave messages for the carers on a whiteboard next to the file they use for writing their records, and as advised by the care manager, keep a communications notebook to keep them up to speed with any changes to the daily routine. I may as well just not bother. None of it is working.

Food, as we know, is becoming a really serious issue for Nick and there is a laminated notice from their manager on the cover of the care plan, asking them to chop up the food they prepare in order to minimize any risk of choking. Ignored, as far as I can see when I come in early one morning and see that Nick’s breakfast seems to be two unpeeled bananas and two pieces of cinder dry crumbly toast that would have had him coughing dangerously.

Did you not say anything? I ask him about the latest annoyance. “I did” he says “but they don’t seem to understand”

Why can’t they just do their frigging job? Which means actually coming when they are supposed to, doing what they are asked to, and reading the care plan?

And this is the bottom line, you see. Nick is going to need an awful lot more support very soon. A specialised chair has been ordered which the carers will need to learn to operate and reposition. More time is being allocated for them to help him prepare and eat his meals. It will need good communication on all sides, but if they can’t read and digest a simple message from me or their manager, how are they going to do the more sophisticated things? 
How can they understand what Nick wants or needs if they just look at him blankly when he says please don’t do that. I really don’t hold out much hope for this lot, but we are stuck with them for the moment until Nick’s finances are finally assessed and the social worker gets back from holiday - again. 

I’m exhausted by it, and resentful because God knows, I have enough on my plate.

So when I walk in to the flat and the carers have just left after a "cleaning session" but Nick is sitting there with no socks on and last night’s chocolate wrappers and what looks like a jacket potato skin under his bare, grimy feet, the washing up has been done but the bin is overflowing and the kitchen surfaces are sticky with wine and cat hairs, I just lose it. I am angry with the carers for not caring and because I have enough to do without doing their job for them.

A Small (Room) Emergency

“Oh, dear, what can the matter be, three old ladies locked in the lavatory…”

We used to sing that at primary school and it seemed hilarious. It came into my head this morning as I prepared to phone the local council and (very old lady-like) give them a piece of my mind.

The handle of Nick’s bathroom door started coming loose just after New Year and I thought we must keep an eye on it. 

By the day of his party, the metal plate had worked itself away from the wood, a couple of the screws were hanging perilously out of their plugs and Simon had to bring his toolbox round to screw it all back in.

At the old flat, he’d pulled the towel rail right off the wall in the first week. We thought that it was pretty amazing if this was the only casualty so far of his well-known super strength, and I felt quite pleased, thinking that this place obviously suits him better, is much more spacious for manouevre and seems to be a lot sturdier under the constant crashing and bumping around.

By the weekend the handle was only hanging on by a thread like a wobbly tooth. The wood around it was so wrecked that it needed some proper attention beyond our first aid, and I phoned the repairs team at the council the day after his birthday and booked an appointment for their handyman to come round. No problem, we'll see you on Tuesday. Gosh, the joys of being a council tenant! I thought. Except not, because he didn’t turn up.  I was away for a couple of days visiting our stepmother so I didn’t find out until nearly the end of the week.

I did wonder if he’d come and Nick hadn’t heard the buzzer, but most of the council workers had access to the key safe and the Trade entrance, or would have left a card.

Phoned the council. A surly man on the helpline did not want to help. 

“But this is a health and safety problem!”

He told me that it didn’t sound like an emergency and he couldn’t book another visit until the end of the month.

“Please. Can’t we do anything sooner, given that this is a vulnerable person and we’ve already had a missed appointment?”

Nope. Talk to the hand. The computer says No.

A few days later I tried again and spoke to a nice woman who said she couldn’t get an appointment any sooner but she would log a complaint about the no-show. Should we just find our own handyman and get it done privately? No, she says, as it is a furnished property and therefore needs to be dealt with by the council service.

So we’ve had the whole thing taped up with gaffer tape and tightened up the last shaky screw head every time we’re there, but it’s been an accident waiting to happen.

It’s no use reminding Nick to leave the door open when he goes to the loo, because he says “I will” and then always forgets and slams it shut.

And sure enough, last night I got a call from the Citywide Alarm service saying they were with my brother who had been stuck in the bathroom unable to open the door as the handle had fallen off altogether. Thank goodness he’d been wearing his alarm pendant, which he doesn’t always remember to do.

Thank goodness he is a bit dazed but totally matter of fact about it, safe and not in any way hurt.

When I go round later to make sure all is well, he tells me “a man from the council has been round to say the door will be fixed tomorrow”

Wow, that was fast! The alarm team must have raised their concerns and it’s finally got things moving. It seems to take an accident for that to happen, I think to myself and not for the first time.

So this morning I phoned up to check that someone really will be coming today, as we were going to take Nick into town to get his broken glasses fixed. Another helpful woman had a look and said, yes it is on the list but not necessarily marked as urgent, however she would escalate it to an emergency call out to be made within four hours.

Four hours have passed. 

I have a bad feeling about this...

Second that Emotion

There can be a level of autism in people with Huntington’s as the brain’s more complex functions begin to erode. I see it with Nick in conversation as he vaguely recognizes that some response is required and he tried to offer an appropriate comment. 

For a long time when he was living up north and appeared fairly well in many respects (and to the point that I often forgot about the illness), he would infuriate me on the phone; we’d be talking as normal and I’d tell him something funny or sad but it was as if he couldn’t always tell which was which.

“HOW Funny” he’d reply, or “HOW interesting” – sometimes interchangeably, as if at random. I felt maddened by his pat response. We had been friends and confidantes for so long and this reaction seemed so insensitive, like he wasn’t really paying attention. Now I realize it was the encroaching effects of the disease, slowly stealing his emotional capabilities and empathy.

One time I had to tell him that someone we had both known since primary school had died suddenly, leaving two young children, and I was feeling very shocked and upset. I thought Nick would understand but he listened and then said,

“HOW funny. Guess where I went for lunch today?” 

These days I don’t look to him for an empathetic response – if it suddenly comes along, that’s great, but I don’t expect it. His world is shrinking around him and the thing that seems to dominate emotionally is where and when he is going to get his next drink.  

It’s not that he’s a lost cause; he can still be thoughtful and sensitive and make sweet gestures; he was determined to buy people Christmas presents, for instance (with a bit of help actually getting to the shops and paying for things) and he clearly loves us, his children and his cats.

But it’s hard to tell what he is actually feeling, and perhaps that is a mercy too – that as the illness gets worse and even eating, swallowing, sitting in a chair become Herculean tasks, the brain shuts down its emotional responses to concentrate on the important job of just surviving.

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. 

Well did you evah?

What a swell party that was.

I was a bit wired and tense all day without really knowing why, just wanting so much for the day to go right for him. He’d had some cards already and in the morning we opened them and a few of the presents. Envelopes are beyond Nick now but he can tear open wrapping paper like a child, just flinging the bits on the floor, gleefully revealing some new aftershave, some chocolates and some audio books. An early Bruce Springsteen CD that he had always loved but had got lost or borrowed and somehow never replaced. A set of sturdy handled “good grip” cutlery to help him eat more easily. Some hankies and – piece de resistance – a very beautiful chunky pipe because we are trying medicinal cannabis as a muscle relaxant.

I am not totally convinced about this – is it just another avenue for his addictions? - but Nick says he really feels the benefit (well he would, wouldn’t he! I think to myself) and naturally both our teenage sons are keen to back it up with extensive research they’ve done on the internet. I’m still not totally convinced but if it makes him happy…and unlike the wine, he probably won’t be able to operate it on his own and will need some assistance. “What, from your lot?” said a friend, laughing raucously.

We said we’d drive him out to the countryside to have lunch in a nice pub, but I had gone over a kerb on the way and the tracking had suddenly gone AWOL so with the steering swinging wildly around like a dinghy at sea, we didn’t dare. It would have to be the nearest place with a car park, ten minutes from his flat. Which just happened to be a pub both Nick and I had worked in about a thousand years ago. All through lunch I felt terrible that I’d messed up his treat, but actually he said it was fun to be somewhere with so many memories of his younger self and all his antics.

And the party…I could just not have asked for more. We’d invited four friends of mine who have got to know Nick and really taken to him, there were the three of us, and lots and lots of food and fizz. Fizz all round. One friend brought flowers, another one some bunting from Nepal, everyone brought cards and wine and then, though I hadn’t dared expect he would really come, a surprise guest of honour – one of Nick’s great friends from way, way back who had seen the Facebook post and got in touch. I hadn’t told Nick as I honestly didn’t think he would actually come but it was like one of those tear jerking TV reunion shows to see him walking in to the room and Nick’s dawning register that it was him, his old mucker.

So it was a great birthday. A swell party. And more to come, even if our car is off the road and we have to push him in that blinking war-horse of a wheelchair with bits falling off it.

Birthday Boy

Nick’s birthday is this week. He’ll be 55 – finally old enough to qualify for residence in a sheltered housing association though it’s too late for that for the time being. He is happily ensconced in his council flat, and the bathroom adaptations and wheelchair ramp are to be installed in the next few weeks.

“What would you like to do for your birthday?” we asked. He said that he would like to have a party. Well – I had already made that declaration to myself that we would be more social, bring the world to him if we needed. His list of invitees included his children (currently in the middle of GCSE mocks in Newcastle) our 91 year old stepmother, his lovely friend from the north east (whose son is also struggling with GCSE mocks) and his old school friend from London. 
With less than a week’s notice for making a trip to Sheffield on a Thursday night, I thought it might be a wee bit unrealistic. But we have invited them all anyway, with the proviso that we know they probably won’t be able to make it this time but not to feel put on the spot, we’ll have a proper party later in the year with a bit more notice and preparation time. Thursday will probably just be us and one or two friends who have been really good to Nick in the last few months.

But I have done a slightly unethical thing (or is it? I don’t quite know) and gone to Nick’s Facebook account to put a call out to all his friends and contacts there. Nick is no longer able to type or even open up his laptop anymore, I explain.  He can’t keep in touch on his own initiative but his heart still often turns to his old friends. So this is his sister posting from his page to tell you that it’s his birthday coming up and he would be so thrilled to hear from people. Please get in touch if you’d like to send a card and I’ll give you the new address.

I’ve had lots of replies – many from the wives of his old school friends, ain’t that the way, I thought to myself! - and some people didn’t even know Nick was ill let alone that he is back in Sheffield. They are all keen to get in touch and the wives say they will give their husbands a nudge to make more effort to visit or telephone. So I think I have done a good thing but I haven't told Nick so it does feel slightly weird, like organising a surprise party for someone behind their back. I just hope it pays off with lots of birthday wishes and cards to make him feel loved and connected with the wider world. 

Meanwhile, we had been talking about how this time last year I had gone to visit him in Consett and neither of us could remember what we’d done to celebrate.

All his 2017 diary entry (written by me, of course) for the day said was, “Happy Birthday! Mel visiting”

It wasn’t til much later on that I remembered exactly what we’d done. We had gone for lunch at our favourite Italian place – kind of a roadside caff from the outside, but a wonderful hidden gem once you ventured in, with the most extraordinary food. It’s a few miles out of town and back in his “going out for lunch” days Nick used to go on the bus, but since he had become more wobbly he only went there when I could take him in the car. 
So we went there, to Michelangelo’s for lunch and then in the evening Nikki and the children came to visit. We all went to Nick's favourite pub down the road and then came back and opened a bottle of fizz and talked excitedly about the campaign I’d been hatching up to raise money and awareness for the Huntington’s Disease Association. 


All good – until after they’d left and I went to bed, Nick said he’d stay up a bit longer to watch TV. That was midnight. I woke suddenly around 2am with a sense that something wasn’t right. The hall landing light was still on and I could hear Nick’s bedroom radio playing much too loud.
I was scared that he would pass out again, be sick and choke, so it was a frightening night as I tried to stay up, dozing with one eye on the open door and not daring to nod off properly until it was almost morning.

“Nick?” I got out of bed and blearily went to see if he was ok. He was lying fully clothed and flat out on his bedroom floor, squeezed weirdly between his bed and the chest of drawers. One of the drawers was hanging out and looked as if it had hit him on the head. I couldn’t wake him. Couldn’t move him. He was out cold. Was he breathing?

Thank God, his alarm bracelet was there on the table and I pressed it, then had to run downstairs for the phone – and there on the kitchen work surface was the bottle of brandy I remembered seeing when I‘d filled my hot water bottle before going to bed. I nearly screamed. It had been full at midnight. Now it was just a couple of measures short of empty. 
When the paramedics arrived they were cheerful and calm but I was visualizing hospital emergency admission, Nick needing to have his stomach pumped – a whole bottle of brandy in less than two hours! When he had already had a fair bit to drink earlier. 

But the team had him sitting up, telling them his name and date of birth and they calmly got him undressed and into his pyjamas, joshing him because he had obviously been celebrating his birthday a bit too well. 

I was scared that he would pass out again, be sick and choke, so it was a frightening night as I tried to stay up, slept with one eye on the open door and didn’t dare nod off properly until it was almost morning.

When I finally woke up and stumbled through to his room, the bed lay rumpled but empty, a radio chat show at full blast downstairs and there in the kitchen was Nick, dressed in clean clothes and bright as a button, making himself an instant coffee. That’s when I realised that he had an alcohol problem. To be able to drink as much as that and be perfectly fine the next day, could only mean that he was used to it.  

I had seen the bottles in the recycling and I always knew Nick liked a drink but I'd had no idea of the extent of it. Actually I still had no idea until he actually moved to Sheffield and I understood just how much of an addict he was. Visiting only every few weeks, I had only ever seen the social picture, not til now the whole bottles of late night brandy or the passing out cold.

So that’s how we spent his last birthday. I'm hoping that this one will end better. 

A Fine Vintage

It's what I’m wishing for in 2018, a fine vintage year of mellow fruitfulness. One that lingers on the palate and in the memory - sociable and warming but easy on the pocket as well as the old grey cells. A Grand Cru, Chateau Pearson 2018. Well, we can only hope!

Christmas seems such a distant memory, even though we’ve still got the cards and decorations up, and all the excitement and bonhomie of New Year too.

Today it’s drizzling and my head is fuzzy and it really feels like that sudden unwelcome bump back to earth and back to reality.

I bought Nick a new diary for the year ahead, and put the 2017 one in the recycling. Then I took it out again as I realised he has kept all his diaries for the past fifteen years and maybe he wants this one too. A record of a year in which he made no entries himself but the pages gradually filled up with appointments for health professionals and all the details of his move to Sheffield. Then: benefits advice lines, social services, council tax, housing and emergency accommodation officers, builders, plumbers, support workers, care providers, hospital, dental, medical appointments, butcher baker and candlestick maker and Uncle Tom Cobley and all. The strange itinerary of someone whose body is no longer entirely their own affair.

There are some fun things there too – his weekly outing to the pub or the cinema with Simon, his Saturday lunch with one of the carers from my old firm, the odd drink with his old friend Dave.

I'm determined that this year will have loads of those and we'll be kicking off with a party next week to celebrate Nick's birthday. 

But in the meantime, here's the sobering reminder of how much things have changed. The diaries tell a story better than words. In 2004 he was running a business and doing some catering work on the side for his (then) in-laws. Married. Cooking. Driving. Not socialising much, a toddler at home and another baby on the way, a hard working family man.

By 2013 he was living alone, separated but seeing the children at weekends, still working and driving but not for much longer. This was his manic phase, making sense of life by writing endless to-do lists and ticking them off.

A year later he was still making lists but his writing is wobbly and wild. By 2016 he had stopped making lists and his diary lay on the kitchen counter open at the wrong week, no entries at all unless they'd been made by me. That's when I knew it was time for him to leave. 

This year? There may be trouble ahead, as the song goes. There are certainly physio and support service appointments and, as Nick's mobility has taken a visible nosedive lately, probably meetings with health professionals to talk of electric chairs and hoists. All this will be in the diary. 
But I am planning lunches, outings, bringing friends round to say hello (my friends - shamefully, many of them have not even seen Nick in the time he's been here. Not for want of trying but because it's been difficult. It's hard enough to get to meet my friends full stop these days - how is it that we all seem to have got busier?? - and Nick's care needs and somewhat unsocial hours have made it tricky to fit into other people's patterns. Also, in truth, I have often really needed to get away from him and see other people, think other thoughts.) But I think it's time to bring them into the picture and make his little flat into a party house. When we have made the effort to involve people and do something social he has enjoyed it so much, "Oh, I have enjoyed this. It's been lovely!" (for all the world sounding like our dad) so I want to make it happen more.
I want to make the most of our time together while Nick is still able to socialise, and this year the diary pages are going to look like something from the Great Gatsby. Photos, leaflets, phone numbers of pretty men and witty girls, coloured inks and felt pen doodles? Yep. There may even be stickers. I am determined that this is going to be a very good year.