Another Swell Party that was.

Nick’s birthday seemed to come around again very quickly after Christmas.

I was still recovering from a second bout of the horrible flu and still not quite right – weak, exhausted, fuzzy headed and feeling utterly thrown by the smallest thing. Hadn’t spent much time with Nick, not wanting to pass on the lurg.

I’d got his presents already – chocolates, a new clock and some Velcro fastening slippers - but the thought of having to organise a celebration just felt absolutely one step beyond.

The trouble was, Nick had been talking about this year’s birthday since around June last year. I’d been pushing him in his Red Cross wheelchair on one of the first days of the glorious heat-wave, celebrating a perfect summer morning, and he’d started talking about January and the birthday party he wanted to have. Nothing like thinking ahead, I quipped. But for a few weeks, while most people were thinking about ice lollies and sunscreen, Nick was inviting anyone he met to his party – six months in advance.

Well, in the end, most of the people from out of town couldn’t make it so early in the new year and so soon after Christmas. But somehow, despite me not having my eye on the ball and then Simon going down with the flu himself, and despite him not using the phone anymore or ever going out unaccompanied, Nick’s invitations had hit the bulls’ eye and LOTS of people turned up.

Another lesson that sometimes I don’t have to it absolutely all. Admittedly, there wouldn’t have been any food without me, and Simon had heroically staggered to the supermarket and bought a load of drinks. And I had been fielding texts all week about the logistics. But a lot of the actual inviting was down to Nick.

And it was such a lovely evening. Another swell party that was. We couldn’t have wished for more.

One friend had made a fabulous chocolate birthday cake with sparklers on top, another had made a quiche at Nick’s request, everybody brought him presents and cards and he spent the evening surrounded by well-wishers and friends – and surprise guests of honour his ex-wife and children, coming all the way from the north east on a school night. Ok, well that was my doing.

But it all reminded me to keep giving Nick more credit for acting independently, and to give us both more breathing space.

It is so easy to flip into permanent emergency mode when there is constantly so much to be done, and Nick can do so little of it himself, or half the time even understands the need. I know realistically that none of those people would have been there the other night without all the back up that Simon and I give, all the time.

But the flu, not being available or hands on, having to ask for more help, has altered my thinking. 

First of all, Nick still does have an independent life to a higher degree than I might see, even if it is mostly internalised. 

Secondly, I really cannot do it all and the only person who expects me to is me. 

I’m still trying to figure out how other people can help, because many friends have said they’re willing, it’s just that I can’t quite summon up the brain power to put it all together. 

Maybe send out a weekly or fortnightly list of tasks and social spaces, time-tabled to fit in with existing appointments and the carers coming in? It’s worth a try. 

Has anyone else tried this? If you’re a carer yourself, what do you do to get more support when you need it? Please get in touch. I'd really love to know how other people manage. It's not going to get easier. We need to put our heads together and find more breathing space.

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!

Channelling Madonna

“If we took a holiday…just one day out of life…it would be so nice”

Well, I am channelling Madonna and going on holiday on Monday. Four whole days and nights away, out of the country, in the south of Italy with two of my oldest friends. 

Lucky, lucky me.  Many carers are on the job 24/7 and get no break at all. A terrifying percentage of carers have not had a proper break in years.

Just think about that, if you are lucky enough to be employed at a job that gives you 3 or 4 weeks’ holiday time; caring is a job too, often on top of an actual job and with minimal pay or recognition for your work let alone sick or holiday pay. The relentlessness is beyond exhausting; there is no clocking off and even if you do get a bit of respite time, it doesn’t last long and because you have full responsibility for the well-being of an extremely vulnerable person, shit still happens whether or not you are on holiday so you can never really relax.

I haven’t had time to look forward to my little break or even think about packing, because this last fortnight has been one long rollercoaster of busyness and emergencies with Nick. So, like any carer who is lucky enough to get a bit of time off, getting ready for a holiday means getting a thousand contingencies considered and prepared for so that you can actually leave the building. Sometimes it really feels easier to keep going and carry on as you were. Exhausted but present for when things go wrong, or just thinking ahead to make sure that they don’t.

Leaving Nick is not that simple. There is so much to do and to plan in advance. The carers will give him his tablets and meals and if the place is filthy on my return and the bins full, with fruit flies buzzing around empty wine boxes all over the sticky kitchen surfaces, so be it.

It’s the unknown quantities that bother me. Not fussy hypochondriacal fretting but proper down to earth worries for good reason. The handle fell off Nick’s bathroom door on Thursday while he was inside, and it was a good thing that I'd come along early to take him to the dentist as otherwise he’d have got trapped in there again.

As it was, I had to use a lot of ingenuity and a fork to twist the lock into place and let him out.

I called the council repairs team and they agreed that it was an emergency and to send someone round immediately. I stayed at Nick’s all afternoon until after 6 but no-one came.

My angry phone call yesterday (after almost an hour on hold. God. If someone could take THAT away from carers) got a promise that they would definitely fix the door before 6pm but when I went in today the door was still unmended. The temporary doorstop I’d made out of a bag of cat litter wrapped in bin liners gaffer taped to the lintel had already had it – nothing stays intact around Nick for long – so I have had to make another one and will phone the council again on Monday morning. Will they pick up right away? What do you think? That’s another forty minutes of my life I won’t get back.

Another worry is the fact that the housing officer at the council has issued a crisis log to Nick and one to Vic upstairs to document any new incidents. Although the hearing loop was working well so that there was no sound coming from Nick’s TV or radio, Vic was still on the rampage and we have had several more violent outbursts and more police calls.

Last Monday I bumped into him coming out of the building and thought, oh sugar. But I stopped being scared of him when I realised that his mental health is clearly on the edge; he kept repeating the same garbled rant about a letter from his GP, and when another neighbour intervened to say, “Vic, I live next door to Nick and I can’t hear a sound coming from his any more”, he got angry and told the man to back off. But I felt vindicated and delighted that someone else was backing us up.

It’s always been all too clear that Vic is distressed but lately I’ve been scared of him. Now he just seemed rather pathetic, and in his own way as vulnerable as Nick. Well, not anything like as vulnerable as Nick, for one thing he can walk and move about freely and speak clearly and act for himself. But he’s not right, that’s for sure.

I had pretty much made up my mind that he must be hearing noise from somewhere else altogether to upset him so much, or (more likely) completely hallucinating.

Then on Tuesday I popped round with some clean washing and it all made sense. I could hear the bassline as I reached the entrance to the building, and coming into Nick’s flat it was deafening. He had somehow found an old battery operated radio and got it absolutely blasting out at top volume beside his bed. All the windows were wide open and the curtains were practically vibrating with the sound, but he was fast asleep. After all that!!! I could cheerfully have strangled him.

He does dimly seem to understand why I have taken this radio away too as well as all the others (how did he have so many! The obsessive side of Huntington’s, combined with always being a boy who liked gadgets) but really doesn’t seem to get how important it is that he honours his side of the bargain not to make too much noise. I have been furious with Vic and scared of him too for making such a fuss, but if he’s been hearing the kind of volume I heard on Tuesday then frankly I don’t blame him.

Meanwhile the carers, who are supposed to do the evening call at a time specific 8pm to get Nick into his pyjamas and give him dinner, have been coming earlier and earlier and I have already complained that they’re arriving too early. Today they rang the bell at 5.55pm. I had gone round with the weekend paper and Nick had only just woken up from his afternoon nap. Again, a good thing I was there as I met them at the door and told them to come back later as this was far too early. I said I didn’t care what their rota said, it was contravening the instructions in the support plan (true) and to phone the office if they had a problem with it. I suspect though that they had got a long gap between clients and hoped to get away with coming here early so that they could make up the time.

Nick would have been befuddled and just let them come in and give him dinner a good two and a half hours earlier than his body clock would like, in his PJs like a baby at 6 while it's still light outside, and then left on his own for the evening before he even realises what’s happened. It’s not on.

I sound like a dragon but honestly I need to be, because the point I hope I’m making (and forgive me if I’ve laboured it, you can see that I could do with a break) is that things DON’T happen seamlessly. Even on a good day with no actual life-threatening disasters, there is always stuff like this that should be going according to plan but doesn’t. People paid to do their jobs, their “you had one job” roles, who don’t do them. Who sorts it out? Me. And if I’m not there to fight for Nick, who will be?

And now I am about to leave things to take their course for a few days and everyone says don’t worry, it’ll be fine, just go, and I’m sure it will - but you can see why I’m anxious, can’t you?

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.

Ten things I have learned about being a Carer

Earlier this year I became a Carer and it turned my world topsy turvy. 

In some ways I feel a bit cheeky about writing this as some people I know have been doing it 24/7 for years, while for me it’s only been a matter of months.

I was working in social care before that, so in some ways I had some understanding of the terrain. But that was a job and it always came to an end point where my shift was over and I could walk away for the day.

Nothing can really prepare you for the real nitty-gritty of becoming a carer when it’s up close and personal. And unlike a job, you don’t walk away from it at the end of the day. In fact, the end of the day is generally where it all starts to kick off. Your shift is permanent, no clocking off, you’re always on duty. What’s more, when the person you’re looking out for is someone you know and love, all sorts of complicated emotions come into the mix and the pressure to do the right thing for them becomes more intense. It can be a hell of a shock.

So the last six months of becoming primary carer for my brother have taught me an awful lot. These are a few things I have learned:

1. It is too easy to lose your sense of humour

For God’s sake, find something to laugh about.

When my brother first came to live nearby, it seemed that every possible thing that could go wrong did go wrong and I was completely clobbered at the realisation of how vulnerable he was, with me as his only champion. I went into a kind of fire-fighting emergency mode, permanently tense and brittle and expecting nothing but difficulty because there had already been so much. It went on for months.

Then one day, a kind but rather dreamy friend dropped round for a cup of tea and listened to all my troubles. I was simultaneously folding my brother’s laundry, cooking up a batch of pasta for him and waiting for a phone call from the social worker while we talked, and I was approaching a state of hysteria. My friend was sympathetic and it was so lovely to just touch base with someone outside the situation and also, to have a witness to what was going on. As he left, he said lightly, well don’t forget that you can always call me to go for a walk or something if you’re at a loose end.

A loose end! The laugh came out of me like a lion’s roar. I laughed so much that I was bent over double and tears were running down my cheeks. He laughed a bit too as he realised how alien that must seem at the moment and what a daft thing it was to say but it kind of saved me. That and aquarobics (see below)

Having a good laugh takes you out of yourself and then fits you snugly back in. It's good for your stomach muscles and reminds you that somewhere there is sunshine in the world.

2. Do something physical, away from your caring duties.

You might be on your knees with exhaustion after six loads of washing and being up half the night, but you still need to stretch some different muscles and get rid of that pent up adrenalin. Exercise might seem like yet another luxury you don’t have time for any more but if you’re reading this then you’re probably already a superbeing who can fit any number of impossible things into the day before breakfast and you can make time for some exercise, however small. Aerobic, relaxing, whatever, just something that puts you back in touch with your own physical presence and reminds you to breathe differently.

For me it has been swimming. One day while things were particularly bad with Nick and it was all still new and very raw, I started going to the pool and I’ve been going three times a week ever since. I swim very slowly with zero technique, and have occasionally been overtaken by two elderly women swimming side-by-side having a chat. So what? It’s not a competition. It’s my time to unwind, and oh my goodness it does the trick. There’s usually a point after about a dozen leisurely lengths where my shoulders un-knot, I can forget my troubles, and if the water doesn’t manage that then the sauna usually will.

3. Whatever gets you through the night

The day that we packed up my brother’s house to come to Sheffield, I cadged a cigarette from one of the removal men and though it never went beyond one or two a day (I am one of those horrible people who can take it or leave it, and mostly I leave it), over the next few months there were times when the demon nicotine didn’t half do the job. For someone else it might be chocolate, or fizzy drinks or just deciding that something on your list doesn't have to get done today. 

And having said that –

4. It’s crucial to look after yourself

Stay healthy and drink enough water. Take your vitamins. Grab the chance of an early night or offers of help. Also, occasionally make an effort to look nice.

My brother has always been a sharp dressed man and cared much more about clothes than I ever have, so I realised it was doing him a disservice to go out with him looking like a tramp. It made me feel a bit more human too, not just throwing on the same old comfy velvet leggings with a bit of jam stuck on the bum. 

And actually not just human, but visible. One day out of the blue, he said, “You are looking really lovely these days and I like your summer dresses” which is an amazing thing to hear from your little brother at the best of times but extra amazing when so much around Nick seems to pass him by and he often hard seems unaware of what’s going on at all. 

Then there is mental health. Being a carer can be really really tough and for all the nice dresses in the world it's easy to feel overwhelmed, submerged and invisible. Please do not take this lightly. You are doing the most amazing job and you need validation. 
I have been lucky enough to have a local scheme working together with Mind to offer free counselling for carers and it genuinely has made all the difference; I'd go so far as to say it's been a lifesaver. Social networking has been a real lifeline too (see below re Friends) as well as organisations like Carers UK whom I cannot recommend highly enough. They have a decent (if rather dense to navigate) online forum and may be able to provide or links to support in your area. 

So look after yourself because probably no-one else will and it’s too easy to go into fuckup mode. Admittedly, the dental check up and the hair cut keep migrating from week to week of my to-do list, but they will get done in the end.

5. There is enormous value in ritual

Ritual calms the body and mind and brings your attention back into the present moment. The ritual of packing my towel in a particular bag and walking to the pool is all part of its health benefits.
Also, one evening a week I go to an aquaerobics class. It's with a small, friendly core group and we all greet one another cheeerfully but would probably not recognise anyone with their clothes on. 
We do (actually quite taxing) moves in the water to hi-energy dance tracks and rock 'n' roll oldies. It's completely ridiculous. I go round to see my brother beforehand and afterwards I come home feeling stretched and refreshed and nicely tired and ready for bed. 

Meanwhile my brother is a creature of habit. He has TV and radio programmes that he watches / listens to religiously, a cinema date with my husband every fortnight, and he has a nap at the same time every afternoon. It makes things easier to plan around and keeps our worlds ticking along just a wee bit more smoothly. 

6. Remember who else you are 

What would remind you that you are you? For me it's going to the cinema, making and looking at art, meeting friends and doing something that uses a different set of skills. Having different conversations. 

I go to a book group one a month at the local library. I've been volunteering at a local food waste project, run a vintage bric a brac stall at an antiques market and at the moment I've got a Christmas job in a very girly shop full of handbags and pretty nonsense. 

And I've religiously made time - not often enough but it's always been a treat that lasts for a while - to meet up with dear friends in other parts of the country. Having a day out and catching up with them has been so restoring, and oh I do love a road trip, just being unaccountable, me and the open road and even the traffic jam, the freedom of movement and actually being somewhere else. Not to mention the joyful caterwauling along to loud music that no-one else would stand for a minute.

7. Become a Ninja 

Fighting for the rights of your loved one seems to be a huge part of the caring role. Benefits going AWOL, decisions to be made about health and financial matters, services closing their doors inexplicably and endless, endless bloody admin. 

Fighting for recognition of your loved one's status, fighting for acknowledgment of your own. 

There will always be more fighting to do so you've got to stay in shape here and it's nothing to do with physical fitness though everything to do with your psychic health. You must learn to be a care ninja, using martial arts techniques of softness and deflection. If you've ever done Tai Chi, you know that you can knock an opponent right off balance by simply softening up your stance or just moving out of the way. It's a good thing to have in mind when your hackles are rising as X Y Z infuriating injustice has been perpetrated yet again. Don't waste your energy, use it effectively and economically. Try Less Hard*. 

And remember - kindness is a SuperPower. 

8. You will lose some people…

A hard lesson, this. When you are already feeling isolated and adrift, it is the loneliest thing. But not everyone can cope with this side of you, or (more importantly) with the person you care for. 
There were a couple of people who knew Nick and were keen to help, then suddenly melted out of view when they actually met him again and realised how much he had deteriorated since they'd last seen him. 
One of them said, "I didn't realise how bad he was. I'm really shocked." 
The other came out with us both for a drink and then talked to me over Nick for an hour as if he wasn't there. We haven't seen him since and he has made excuses whenever I suggest a meeting or that he might visit. I can't blame anyone. Huntington's is a difficult illness to be around and a lot of people really don't know what to do, however much I try to bring Nick into the arena of "normal" social activity and reassure them that they don't need to do anything, just be there. But when you're a carer or used to being around people who happen to be impaired, this all seems normal and you have to remember that not everybody is used to that. But added to the fact that you don't have time or energy to meet up with friends the way you once did, and you're not sure you can bear to explain to even some of your besties just how tough the tough times are, it can just feel very lonely.
Luckily...

9. …You will find friends in unexpected places
My most squeamish friend was completely weirded out when she encountered me out and about with one of my clients who has Alzheimers. But she has taken Nick out for dinner a few times now, just the two of them, pushing his wheelchair in her designer heels and graciously coping with his tics, his imbalances and his coughing and spluttering when he eats. She even organised it so that it looks as if he is paying the bill (they go halves and she sorts it out later). She has made him feel interesting, accepted, like a normal bloke out on a date with a good looking woman. What a star. 
And I have met the most amazing people online - other people in the same boat, people affected by HD, people like me who never imagined this would happen to them, other carers who I might never meet in person but have been such a source of support. 

10. You are not alone

Unfortunately, a lot of the time you are. But see above. I'm writing this on Carers' Rights Day which is a national celebration and call for recognition of the sterling work done by carers everywhere. It is a double edged sword - you need to remember who you are when you're not being a carer but as carers we also need to show ourselves, stand up and be counted. The more of us the more visible we become. There really is strength in numbers and the more we identify ourselves, the less alone we become.
Who's with me???

* My friend Alison coined this phrase as a mantra for life and has written an e-book  https://www.smashwords.com/books/view/761127 explaining how. I have found her sane, balanced approach a really useful antidote to the daily pressures and the endless to-do list!