Mary Poppins Returns

Is it possible to come back from holiday as a carer and not walk into some kind of slapstick disaster scenario, the kind where you innocently open the front door and a huge tidal wave of dirty water bursts through and knocks you over? I wonder, as I sit here wading through a towering pile of paperwork and things still undealt with to chase.    

Actually, apart from the admin shit storm it hasn’t been too bad. While we were away, Nick was so well looked after by Helen and a wonderful dream team of friends, that in some ways I think he barely noticed we’d gone. There were a few blips but nothing major.

My A-Z list of contacts and contingencies stretched over three pages and spanned the main areas that someone could reasonably expect to have to deal with in my absence. I’m not sure that anyone even looked at it, which is probably a good thing. Things ticked along just fine and they didn’t need to.

Of course, that was lucky. I had spent the fortnight before going away making sure that every little thing I could possibly think of was covered, and there was a lot – financial juggling to make sure Nick had enough cash and that bills could be paid while I was away, medications review, hearing aid repair, continence assessment, OT and wheelchair update, repairing the broken loo, getting in touch with police and housing and social worker about ongoing harassment by the upstairs neighbour (he has continued to tape ill-written hate notes onto Nick’s door every day for the last month, but mercifully didn’t actually attack anyone. I’m almost beginning to see the notice writing as his hobby.)

So everything was fine and although I did return to a couple of minor annoyances – nobody had changed the cat litter in two weeks and I arrived to find Nick sitting in a stuffy, stinking room with flies buzzing around his table, because the (paid) carer who was supposed to do it had not turned up – apart from that, nothing untoward, and he was happy and nurtured and safe. 

“When are you going away again?” said Helen jokingly but I actually felt that it would be possible. 

I can’t thank her and the other friends enough for that, and even the usual carers who carried on doing their normal routine perfectly well without me there, even if a few things got left undone without my constant tweaking and nagging.

And it did make me wonder – all the stuff I do, the never-ending to do list and phone calls and trouble shooting – is it all in my imagination and do I make a rod for my own back most of the time?

But then, all the letters about benefits and health appointments and missed payments and PiP assessments and insurance and utilities and you bloody name it, were all waiting for me to deal with on my return and they are certainly not imaginary, I only wish they were. 

And last night I popped in with some food for Nick and found two carers standing outside the flat looking fazed. Between them they had managed to take the key out of the keysafe and drop it down the drain a few feet away. Now they didn’t know what to do.

“Do you have gloves with you?” Carers nearly always carry gloves.

So armed with latex, I climbed over the fence around the little garden area and knelt down amongst the weeds to prise off the drain cover and yep, there was the pink key fob glinting down there in the water. Not too deep – I fished it out and wiped the muck off on the grass. The carers looked astonished. I genuinely don’t know what they would have done, but chances are that Nick would not have got his supper.

Then we went inside and I put Nick’s tablecloth to rights as it was sliding halfway off the table onto the floor, and in the process discovered the hearing aid that had been lost for the last week and that no one had been able to find. And found some new batteries to put in the clock that is so old it doesn’t even tell the time properly but is an important little talisman for Nick to reach out and touch periodically on his table.

I felt a bit like superwoman, putting everything to rights in the blink of an eye, or maybe Mary Poppins magically restoring order in the room, but it was just luck really. And the eagle-eye, 360 degree overview that perhaps only the primary carer ever really has; the person who’s there every day in all weathers, dealing with every aspect of the care from A to Z and back again. No-one is indispensible really, but that eagle view can take a lifetime to acquire, just knowing that person so well, understanding their quirks, anticipating their discomforts and getting a feel for what they need but can’t find the words to tell you. 

On the other hand, I know I must have blind spots just because I know Nick so well that maybe sometimes I don’t notice the obvious. So it’s really good to know that there are other people, like Helen, involved and getting their own feel for his well-being.

But, “It’s very good to have you back, Sis”, said Nick. And it’s good to be back.

This is often a thankless job and a frustrating one, and goodness knows the admin is enough to drive you halfway round the bend, but for the times I can walk into the room and be Mary Poppins for my bro, it’s all worth it.

Asking for Help.

Why do I find it so hard?

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

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

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

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

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

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

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

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

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

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

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

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

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

How do you have a Social Life?

It amazes me that I still get invited to things or have any friends left but miraculously it seems I do – even if quite a few of them are at a similar stage of life where they are looking after someone, worrying about an aged parent or coping with a troubled teenager, sometimes both of those at once.

When you have that going on in your life, you really need some kick-back time away from your caring duties. Leave the house, go out, see other people, talk about completely different things.

It’s very easy as a carer to feel you’ve lost your identity and to forget who you are, because so much of your head-space is taken up by the person you’re looking after. Especially when they have an illness like Huntington's that affects body, mind and every possible function. 

It's hard to sustain this level of care and dedication without recharging your batteries; you absolutely have to find time to come back to yourself, but it’s also important to be social and meet people as the person you always were, not just as a carer. You need to be able to break your routine and get some physical distance from your cares. Go for a walk, see a movie, have a dance, drink a few drinks, think about something else, laugh without feeling guilty, just lose a few degrees of your endless feeling of responsibility. 

It helps so much to have friends, “people who like you even though they know you “. 
The nourishment  from an afternoon out with a friend or meeting up with a few of the right people can sustain me for days, weeks afterwards. 

The trouble is, though I long to see friends and got to parties and have all those different conversations and so I make plans and put it all in my diary, so often when the time actually comes, something happens with Nick and I have to cancel. That has happened a few times, especially at the weekend when he might have a few more wines than normal and falls over or hits his head. Times when I am all dressed up and ready to go, except that I daren't leave him. 

Or – more difficult to be upfront about as not everyone gets it – I am just too tired.

It’s invariably the worst timing, just when there’s a fabulous party that I’ve been looking forward to for ages – but what d’you know, it’s at the end of a long day or a run of long days with meetings and health appointments and washing and shopping and cooking and cleaning and wiping up the spillage and all my energy feels as if it’s been sucked out with a vacuum cleaner. It seems so weedy but I can’t be the only one who feels like this?

And I feel teenagey, not sure that I want to go anywhere unfamiliar or talk to anyone new or have to account for myself as me. I miss the buzzy high from new conversations and emerging friendships but I’m exhausted and dull and have nothing to offer. If I ever had any sparkle it’s all come off in the wash long since. Since taking on this role it feels as if I’ve lost all my social confidence. And even with the friends I don't have to try too hard with, there are times when it is just all too difficult. 

I don’t want to stop making plans or trying to see people, it is so important, but it is impossible to guarantee whether come the day I’ll be able to leave the house. It's maddening but it seems to be all part of the new way of life where I'm as responsible for another adult person as I am for myself. 

I want to know what other carers do and how they cope. 

So – carers - tell me. How do you have a Social Life? 

An Unexpected Kindness

My heart sank when the upstairs neighbour came round to complain about the noise. It’s happening all over again, I thought.

I invited him in to meet Nick. At least that way, he could see for himself that Nick is not well, and Nick could understand the impact that his loud radio has on other people. The neighbour turned out to have tinnitus like me and gets very affected by external noise. He didn’t want to make a fuss, he said, but it would really help if the volume wasn’t turned up so high that vibrations were buzzing through the ceiling.

I stuck one of my dayglo post-it notes to the wall reminding him to keep it down, and “I will” said Nick, which is his constant saying now – totally meaningless, he says it about the wine (“Please pace yourself, bro”), the carers (“Nick, you must tell them what you want”), the radio, the reminders to check his phone for texts, you name it.

“I will,” he says, like some bridal ceremony on a loop, but even if he thinks he will I know perfectly well that most of the time he won’t. (“I forgot” is the other most popular saying.)

So I have been fretting a bit about the radio as well as all the other stuff I’m worrying about, since both Nick’s physical condition and his mental capacity seem to be deteriorating almost in front of my eyes. The carers are a still a huge worry; some of them have been really keen, reading the daily notes and making sure Nick has his non-slip mats and good grip cutlery to help him eat his beautifully chopped up meals. They have made his bed every time and someone has even been making a stab at the recycling!

Others are just not listening, or not looking. Why did they give him dry toast again this morning when the clear instructions were for two of those sticky malt loaf things that he likes, that the dietician recommended and that were in full view on the kitchen counter? Why was Nick wearing socks with his toes sticking out, bits of last night’s pasta still curling up on the seat of his chair, and a shit smear on his bathroom basin that had been there for three days (I deliberately didn’t do anything about it as I knew someone was coming in to clean today, and I wanted to see if they would notice. Sure enough, they said in their notes that they had thoroughly cleaned bathroom and kitchen, but the shit smear was still there. I felt like putting one of my post-it notes beside it with a big arrow, but in the end I didn’t.

It’s not good enough. It makes it hard to relax. So I feel anxious all the time with that awful infectious dread that has no exact source but just grabs you in the chest and sits there. I know that I can’t sustain this and do the real work of caring for Nick but it’s a real effort to lighten up and switch off, or move into another gear.

But things do give me hope. In the space of a few days, which is often the way, we have had the extremes of understanding and kindness.

One, the business exemption checking service, who wrote a stern letter billing Nick for willful mis-use of a form at the dentist’s. Sorry??

Long story. But to cut it short, Nick’s dear friend Dave from school had been alarmed by the tale of the wobbly teeth. He arranged for Nick to have an appointment with another old school-friend who is now a dentist.

This happened while I was away for a couple of days, so Simon took Nick. He said it was very moving to see the two old friends meeting again after all these years. Nick needed a small filling and had a scale and polish, with a reminder to brush more regularly and stay off the Snickers bars last thing at night. We didn’t think any more of it until this letter arrived.

Apparently Nick had signed the exemption form saying that he received ESA (and therefore did not pay for his treatment) when actually since coming to Sheffield he only gets contribution based ESA as his finances were so tangled that the income related part of it has never been sorted out. Another thing I’m still chasing. So anyway, he should have paid the fee upfront and shouldn't have signed the form. 

Simon didn’t realise – he just assumed that Nick didn’t pay for his treatment – and apart from a few flashes of lucidity, Nick will sign anything put in front of him these days. So that was that, but now, for his perfidious attempt to dodge the system, Nick is being charged a sizeable penalty on top of the actual fee.

I wrote at once to explain that Nick has a serious impairment that affects his ability to process information and of course this was a mistake, our sincere apologies, we will pay the bearer forthwith. But that wasn’t good enough. They replied that we would need to send a letter from a medical professional confirming that the illness in question would have that effect, and one form Nick giving his permission for me to discuss the case on his behalf. As well as prompt payment of the penalty along with weekly interest that was now accruing. If they decided that there was justification enough to waive the penalty then they would perhaps refund it.

Give me strength!

I have sent the proof they asked for and paid the original fee – stuff their penalty! –

and fumed to myself about the extra time it takes up to contact the GP and ask her to write the letter (an email won’t do), and also compose and print out a letter for Nick to sign. Not for the first time, I wish people- organisations, I mean – had a clue about the enormity of work involved for the average carer to just keep the wheels on the road. They genuinely seem to think that we have nothing better to do than gather six different forms of evidence and proof of I.D in hard copy, then send them all first class with recorded delivery.

If only there were some shortcuts for all this admin so that I don’t have to waste another afternoon jumping through other people’s hoops.

And then, just as I was feeling really low and that the milk of human kindness had definitely gone sour, I bumped into Nick’s upstairs neighbour at the paper shop.

“I’m so sorry” he said, “I did some research on your brother’s illness and it’s awful isn’t it? And he’s not going to get any better. Poor chap.”

He asked if there was anything he could do to help. You’ve just done it, I said. You’ve taken an interest – you’ve cared. That means so much.

It means so much that another person gets it, understands a bit about the situation. I realize that maybe there’s something I can do to ease my frustration with all these time-munching organisations. Who knows, it might make a difference and it will make me feel better.

So, every time I have to deal with the council, the benefits agencies, anything official like the dental exemption checking service, I am going to include a leaflet about Huntington’s in the envelope. I’ve started doing this with all my official correspondence. Just so you know, guys!

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.

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!