Crisis

Share information, support and advice on all aspects of caring.
I think I'm in crisis . I care full time for my brother and earlier in the week one of the people who helps said she can't cope anymore and it's because of me .
I have been reluctant to take anti depressants but either that or putting my brother into a care facility seem to be the only options . It's not even straight forward to get a gp appointment and the one I had a good relationship with has just left .
I think I have carer burn out and am going to destroy every close relationship and friendship I have . It's sad that I have let it get to this x
Oh Jackie,
losing support from anyone really adds to the stress doesn't it? We're just coping because of the support and then when we lose it, we feel ourselves sinking. I've been there. Was the person a voluntary support or paid for from direct payments/individual budget?

Could you/ would you accept emergency respite care for your brother?

Melly1
Hello Jackie
I'm sad to read this. Are you able to tell us a little more about your situation?
One thing that springs to my mind, the person who no longer feels able to help, is the cause being blamed on to you, as it may seem to dreadful to blame the situation your brother is in? It is only a thought, and I apologise if its way off the mark.
Hi Jackie, we all have a breaking point. Ring Social Services, they should have an out of hours number if you are desperate. They should be able to arrange emergency respite, or emergency carers at home for you. When did you last have a holiday?
It's a complete mess . He lives here with me and my partner . My brother has Huntington's and I'm at risk I've not tested but my behaviour recently does make me wonder .
I've fought to keep him at ho e as it's such a complex disease finding appropriate care is very difficult .

I've been away to visit a friend but she's from an hd family and also very stressed .

My partner and I do nothing together . I cared for my brother all my life there's a massive amount of guilt . The person I've upset has been coming one afternoon a week and her son has 24 hours via direct payments we do the rest .

I think sending him j to a home would kill me in face we've just finished a big adaptation project so he can stay home with a bedroom and attached wet rom so at least someone else can help to shower him.

I have asked and asked for psycho therapy and waiting again to see if any funding available .

I have hurt everyone around me this weekend especially my partner without whose support the whole boat will sink .
You are worn out, especially after all the house adaptations. As yor brother gets worse, and you get older, it's vital that you dump the guilt and embrace the concept of shared care. My mum was in a lovely nursing home, like a hotel with nurses. If you are prepared to love and care for your brother 48 weeks a year, then he should appreciate that care enough to let you have a regular break, 4 times a year. The slternative is permanent residential with him coming back to you to visit regularly. Is he in receipt of NHS Continuing healthcare?
No we failed the continuing care application and the appeal . Funnily enough a new social
Worker coming tomorrow to do new application .
Good. Make sure that's not all she does, you must tell her that you CANNOT cope without more help. FAST.
Hi Jackie
There's many options between no care and full residential. It needn't be one or the other.
It does sound like too much has got on top of you, and if you've been offered antidepressants they can help to take the edge off enough to enable you to get more help and support arranged.
Meanwhile you can self refer for talking therapy such as cbt. No need to wait for GP or psychologist referral. Just Google cbt and your area and you should soon find it.

This website has info about Huntingtons as well as support for carers
https://hda.org.uk/hd/what-is-hd

Like so many other carers on here, it is very difficult for one person to care for someone who's needs have increased, or will, increase, beyond what is humanly possible by one person or a small at home team. There's no guilt attached, it's just one of those bloody awful cruel diseases. Ditch the word 'guilt' and replace it with 'sad' because sad it what it is. You are guilty of nothing other than caring, in both senses of the word
((hugs))
MrsA
I agree with Mrs A - it doesn't necessarily have to be 'all or nothing' in respect of care homes.

First off, though, I think you need a break NOW - 'to get back to you', as the advert for tea says (I always love that one). So I think a respite break is essential.

Then, think about whether it might be possible for your brother to live 'part time' in a care home. I do think this can be a very sensible option - it gives the carer regular 'time off' but it also allows the caree some 'time away' in a new environment that they may well find enjoyable, and not threatnign to them if they can 'come home' regularly.

So much of the stress of caring is caused by the ' non-stoppedness' of it all - so if you can set up that your brother spends some of this time in the care home ,and some with you,then you get sufficient time to 're-surface', draw breath, have a bit of a break for a few days, and then enjoy your brother coming home again for a few days with you to look after him.

As for the guilt, alas, this makes no sense at all. It certainly is NOT your fault he has HD - it is 'no-one's fault' at all, it's just one of those really wretched 'bad luck' situations which, hopefully in the future, with genetic counselling and so on and so forth as routine, simply will not apply to future generations. I do understand why you are waring of getting tested yourself - in the end, 'not knowing' puts you, after, all in the same league overall as the rest of uf - none of us 'known' what our future will bring, and any one of us could 'go under a bus tomorrow' - who knows. That said, it is entirely up to you, and your personality/preference, as to whether you'd be happier taking the test, and abiding by its findings, as not taking it and 'leaving it up to the roll of the genetic dice'.

But I do think, and now I put my 'pessimists' hat on quite, quite deliberately that IF there is any chance that you too carry the HD gene that predicts the disease itself, then I would urge that you make the most, the very very most of your own current 'healthiness' - and that means, you know, minimising the amount of time and mental preoccupation that your brother's are demadns of you. Have as much 'time off' to enjoy your life, as you possibly, possibly can.