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.
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.
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.
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.
Who's with me???