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Enough is enough - Carers UK Forum

Enough is enough

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Image What can you do when you've just had enough? I've been a full time carer to my disabled hubby for around 7 yrs, he's now such a grumpy, ungrateful, nasty person, horrid to me, but refuses to go into a home. Social services say they can't help unless he agrees to go in a home. I'm heading for a breakdown! Help! Any suggestions please?
Hi Lynne

You need an advocacy worker really. But you have the legal right to say: "I'm not doing this any more, as from (a few weeks away to allow time for alternative arrangements to be made)" and tell your husband and social services that you refuse to provide care. Then he will need to make a choice of his own...

Or you can simply tell him that he accepts some outside help, to help you to care for him, or he will need someone to do it all.

This all comes under the NHS & Community Care Act 1990 and the Carers (Recognition and Services) Act 1995.

But bear in mind - you have to mean it: and it's best if you have an advocacy worker to support you through this because it can be very difficult to get someone to listen.
Hi Lynne, (((hugs))) I really feel for you, I have similar issues to yours. Has Social Services offer him a POC (Package of Care) such as carers coming in? the max I am aware is a QDS (four visits), or do what Charles says.
Being as you are struggling to cope (which is fully understandable, as caring is an extremely demanding role) SS have an obligation to you as well, being as you are his main carer, your health is as vital as his.
There are services that provides carers (like yourself) with mini breaks, so you can have some respite, or if possible visit family and/or friends for a while. If you chose this option then inform SS and your husband that you are having a much needed break, so that they can offer him alternative care provisions, and then he has the choice to accept the offer from SS or not. Being as (I presume -capacity) it will be his responsibility if he chooses NOT to have carers or respite/ residential care.
What a sad situation. I think technically that people don't have to accept care even when offered, and can't be made to leave their own home unless they are a danger to themselves or others, so it is a sticky one. Is there anywhere else you could live - even on a temporary basis - a friends house? Or, more realistically perhaps, threaten to live? That would give you a bit of leverage. And its leverage you need - you sound like a slave in your own home. Your local Carers Centre is the first port of call.
Hi Lynne, you have my sympathy. Try to find a local carers' group for support.

I have promised my husband he will die at home, but he says he will crawl over broken glass rather than have outside carers in. We have a crisis coming up because I have to go away for 4 days later this year and he point blank refuses to discuss alternative arrangements. I have told him we will have "practice runs" when I am in the house but do nothing for him. I reckon if he has a kettle, porridge, Complan and powdered milk in the bedroom he will survive a few days on his own. There will be massive unpleasantness when we do the practice runs because he doesn't realise how dependent he is now. Are you in a position to do something similar? Could you book yourself an overnight break and just go. At least that will make him realise how much you do for him.

Lynne, it might not be possible for you to go away overnight, but you need to get out. Even a short break helps. When you shut the gate behind you, it will be your time, to concentrate on yourself. Could you investigate bus trips to nearby towns, see if the Rotary Club organises outings, sign up for a reading group at the library, or join an art class, or book a massage or a facial for the same day each week?

Are you signed up to Careline for emergency care? If not, ask your local council about it.
Janet - why is your husband so anti-carers for a few days? Does he fear that once you are out of the house you'll never come back, and that the carers will end up being the ones to look after him for ever, or he'll be lugged into a home, or a hospice?

Because unless he is terrified of that, there really is nothing he can say that would justify his opposition to your brief absence. It's mean, selfish and cruel - end of!

You say he won't discuss alternative arrangements for his care - but he doesn't need to! You simply organise it, and do it. It's something I'm learning about my MIL - it's hopelessl trying to get her to agree to something she doesn't want to do, so now I've learnt that I no longer ask, I tell. I tell her what is going to happen, and I think you should do that with your husband. Calmly and clearly and without entering into conversation or debate - it's not to be debated, it's going to happen, end of.

Of course he won't like it, he will probably play up, sulk, whatever. So what? You are giving up SO much of your life for him already, it's absurd not to take a few days away from him. He may not enjoy your absence, but it's not going to do him any harm - and it will probably do you a power of good!

Good luck, and just do it!
Hi Jenny, thanks for the support. He hates being in a situation where other people "tell him what to do". Therefore he resists the idea of seeing a doctor, a nurse, a physiotherapist, a paid carer, etc. When I try to discuss this, he retreats into saying "I don't feel well, and you nagging makes it worse." At the same time he assumes that I will always be there to look after him. I have only realised over the last few months that this is emotional blackmail because caring crept up on me and I did more and more without noticing. As you say, it is up to me to organise something. That's why I want to do practice runs, to see exactly how much he can / cannot do. I have a card from Careline for emergency care, but a planned absence is not an emergency.
Thanks everyone. I have some breathing space at the mo....hubby in hospital for 2 wks!
I can arrange carers to come 10 hrs per wk but am waiting for local authority to arrange the funding for this.....have been waiting since October. My hubby needs care 24/7 as he can't do anything himself, he's totally reliant on me so suggestions of leaving him on his own, even for a couple of hours, is not an option.