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.

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 explaining how. I have found her sane, balanced approach a really useful antidote to the daily pressures and the endless to-do list!