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.

A Lesson.

So that was Christmas, as John Lennon sang, and what have I done?

Slept, mostly. Boy, have I slept, like a cat, like a baby, more than I can ever remember sleeping. Sleeping in the afternoon. Turning in early. Waking up at the normal time and then going back to sleep for another two, three hours.

I’ve been ill, though. Proper, knock-you-down-where-you-stand, incapacitating flu, where you just have no choice but to go to bed and stay there.

Thank goodness for everything stopping for Christmas Day and then that sleepy downtime between Christmas and New Year when we hadn’t got much booked in anyway.

It’s been a week now and the aches and whirly bedrooms are abating but I can still feel the virus running through my system, the cough is still hacking out of my lungs and I’m weedy and can’t martial my thoughts two miles ahead the way I usually would.

Simon took care of everything – cooked, entertained, chauffeured, ministered to bro - all the things I would normally do – and the children have been to visit, and he’s had a really cracking Christmas.

His fridge is full of cheese and home-made trifle and he’s been given enough chocolate to last him, ooh at least til the end of the week. I am so grateful.

And relaxed. Sleep is such a healer.

But during my long, fevered Christmas night, so delirious I was hanging upside down out of bed trying to cool my forehead on the tiled fireplace, awful thoughts were pounding through my head and one thing was clear : I can’t keep it together indefinitely the way I have been. Something had to give.

Simon has been beyond spectacular and what I’d do without him I just don’t know, but he still only takes care of the basics. I’m the one who keeps it all ticking over.  And what if it had just been me and bro? This was one time when I couldn’t just stagger through, feeling a bit rough but coping anyway. I couldn’t even sit up.

So yes, I feel that this illness and enforced rest has taught me a lesson: understanding my limits. 

I’ve talked in the past about needing to ask for help more, and here and there people have offered, and some really do help already, with lifts and little socials and just invaluably staying part of the picture.

But I think I've inadvertently deflected other overtures because it is always hard to explain what kind of help we need exactly when the needs can be so amorphous and yet so complex. And you’ve kind of got to know Nick to know what to do. So a lot of the time it is just easier to get on with it all myself. 

But I don’t think I can do that anymore – even with Simon's fantastic back-up, there is too much, it’s too big for us both to deal with on a sustained basis.

When Nick had his service assessment recently, the lovely case manager from the Neuro team put it very well. She said, although Nick appears to be living independently, making his own decisions, we all know that he isn’t really able to do anything without constant intervention on all levels.

So I’ve been thinking. We need more back up, and I need to ask for very specific help and more of it. 

I'm still trying to figure out what could be most useful, but I think it would be social. I'm thinking of a pool of people I might be able to call on, to go in and visit him for a glass of wine (there's no point me saying "for a cup of tea", now, is there?) and a chat, or to discuss what's in the paper with him, or read him a chapter of a book, or take him a rice pudding, or even just pop in to check that everything is running smoothly, just so that I'm not always the absolute first point of contact all the time for everything. 

I don't know quite who they'll be, these good soldiers, but if you're reading this and get a call from me, don't be alarmed - after all, you can always say no. But I need to start opening up the conversation, and it seems as good a resolution for 2019 as any. 

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? 

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!