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Don't want to stop caring - Carers UK Forum

Don't want to stop caring

For anyone who is bereaved or no longer providing care.
Hubby's been in hospital six months now. Still waiting on pet scan. Had meeting with consultant on Tuesday. That when she dropped the bombshell I was totally blindsided. She told us that a consultant neurologist had seen hubby last week and thinks he's unsuitable for rehab. She is saying that because he has a brain injury his condition is fixed and there is nothing they can do medically to improve his condition. Their saying he had a brain injury before they have even done the scan to find out. Now to the bombshell. She says that they are going to put him in a placement for the rest of his life. He'd in end stage copd do his life won't be long. I told her that there is no way I'm going to allow them to put him in a mental institution for what left of his life without a fight. As a family we are perfectly capable of caring for him at home. I told her that we wanted the opportunity to try and look after him ourselves. I am going to get legal advice tomorrow and I've contacted the human rights commission and they are looking into it as well. He's not a danger to anyone so I don't know why they are doing this. I feel like I'm falling apart.
good luck and i hope you get the result that's right for both you and your husband.
Gosh, how worrying for you. I really hope that you are able to have hubby home with you, keep fighting, you can do it. xx
The PET scan was done today. Saw our solicitor this morning she said its now waiting to see how the doctors are going to go about taking my husbands liberty away. Once we know that we can act to try and stop them. I feel I've the doctors have just dumped me I've cared for my husband very successfully for years and now I feel like they think I can't cope with him which I can. I'm so worried and angry. I never dreamed that they could do this to us. I've told the solicitor that i am prepared to go to the media if we have too. If they can do this to my husband then they can do it too anyone. If feel like David facing Goliath
Interesting scenario. What does he want, and what is your own capability in respect of meeting his needs? But anyway, this might well be one of those "See your solicitor" moments. First consultation is usually free.
I'm feeling sorry for you and the doctors at the moment. So much depends on the individuals involved. Some wives would be frightened at the diagnosis and only too relieved that at last someone else has taken over the caring role. Some doctors would think that their decision was "doing the right thing", but for you, it was the wrong thing. What needs to happen now if for a case conference to be held, in a room away from the ward. You need an advocate to support you (I had one from the Princess Royal Trust for Carers at a difficult meeting). You need to see a detailed report of your husband's condition, and what he will need for the future in terms of both care and equipment. You need to ask for a Continuing Care assessment so the NHS can look properly at how you could manage your husband at home - if you were doing it before he went into hospital has anything changed? Sadly, my own husband died suddenly from a heart attack, and I've been widowed for years, but I know that in the future you will feel much better about what happened if you were allowed to do everything you wanted to do at this stage. If he comes home, you cope for a while but something changes, then you know you will have done your very best. He simply needed more than you could give, and he'd be admitted to hospital, which is what they are planning to do now. As long as your home can be safe for you and your husband to be together, with good support, the question is surely "Why can't I take him home?". I think consulting with a solicitor is a good idea. I know that there have been fairly recent changes around mental capacity, power of attorney etc. and this is relevant when it comes to who can represent your husband when he cannot speak for himself. In the meantime, take really good care of yourself. Hope that helps.
Hello Joanna..just a few thoughts I want to add to your thread if I can.

I have just read back through your posts, just to remind myself. I remember now and felt so bad for you, at the same time I was full of admiration for that streak of good humour that was showing through, even when you were so disturbed.

I cannot understand why the doctor concerned has talked about a permanent facility, you mentioned mental hospital - is this what she said, a psychiatric hospital? I'm fairly sure nobody can be placed in one of those for life? Is it for the brain injury or the COPD?

Gosh I'm going all around the houses here, sorry. What I am trying to say is get the facts in writing. Why they are talking of placing him, do they want his and your consent (without it they are going to have a tough time), what's it for etc.

Havoing said all that Joanna, I am worried about you. From reading your past posts, you were having difficulties coping with some of hubby's behaviour and what you were having to give up to take on the care of your hubby. Has that changed or is it the fact that these docs have taken the decision away from you and hubs?

Please don't think I am criticising your choice to look after hubs at home because I'm not - if that is what you want and you feel able to provide what he needs without jeopardising your health in any way. If you do want to go ahead, please get as much support as you can (hopefully not that useless woman from the carers centre), including regular respite.

You have had some brilliant advice from others who know about caring for someone with dementia, I am coming at it from a slightly different angle, more of a "sitting on the fence" point of view. This is an awful time for you but you have support here..good luck with everything x
Ok I'll try and clarify if I can. The doctor said that it would
Have to be somewhere secure. She is wanting to do this because of his brain injury. She says he's impulsive and unpredictable. He can say inappropriate things She believes he has a mental age of less than 12 even though no accessmeant has been done to prove this. She says that she doesn't want him going home and ending up coming back in to hospital again after a short time even though last time he got out I got no support at all and I think that's why he ended up back in. I said with the proper support we would be more than able to look after him. She said the most she could offer was a visit from a Cpn once a fortnight. Nothing has changed in my ability to look after my husband. In fact I would go as far to say I would do a better job that what he us currently getting at the hospital he is in. Hubby doesn't want to be there I and my family don't want him there. We are capable enough to look after him but this doctor doesn't want to give us the chance to try. There is no way I would put my hubby,my family, the public or myself at risk by bringing him home. My hubby us not at the stage were he need a permenant placement. And yes it would be in a state mental hospital. All other options have not been exsplored I am not happy and I feel that my wishes are not being listened to. I have moments when I feel sorrow for myself or overwhelmed by a feeling of loneliness or helplessness but this has never effected my ability to look after my husband. In fact it is the professionals who are supposed to be helping that are making the situation worse and overloading me. I'm at the hospital every day hubby is allowed out for 7 hours a day at the moment I have had him out everyday this week without any problems. If as the doctor says he is a danger to me, the public or himself am I allowed to take him out at all. It doesn't make sense. Needless to say they are going to have one hell of a fight on there hands before I let them put my hubby away. They have a tigeress by the tail.
Thanks for the clarification.

On the information you have given, although I am no expert, I would say that the good doctor is stuffed.

Go get 'em tigress. Image
I quite understand why you feel like having a go at all of them, I'm sure they deserve it, however you might find it easier in the long run, to get what you want if you don't end up in a huge battle, when no one wants to back down. Curse them, swear about them behind their backs, do anything you like BUT be nice as pie to their faces. I'd also suggest that you kept a diary of who you saw, where, when etc. and how your husband was. Ask them some questions by letter or email, and ask for the reply to be in writing so that you can try to understand it better, share it with the family, whatever excuse you like, but get the reply in writing.

By asking for explanations, saying that you don't really understand (i.e. acting almost as if you are a bit dim, although you are clearly not) people will write things and give you information which they think you need, and in doing so, give you ammunition, without realising. So if they first say that your husband is a danger to himself and shouldn't be let out, for example, you can then ask them to explain, very gently (and that's crucial) how they minimise this risk and when he's likely to be a danger? Ask what support they offer you husband when he's out, so if they say a nurse goes with him, you can then ask if Continuing Care couldn't get a nurse to do that from your house too? Once you know the arguments which they are using, you can then work out a solution. I hope you see what I'm getting at,this may not be the best example. Just keep cool as a cucumber when you see them. My old boss taught me how to do this, and it's worked brilliantly for me on many occasions.