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THE RESPONSIBILTY - Carers UK Forum

THE RESPONSIBILTY

Share information, support and advice on all aspects of caring.
I have been awake in the night, trying to work this out.......

Those of you who have read my posts before will possibly recall that the poor ould fella has dementia and health issues. These have increased over the last week, and as well as having a stoma, and bag, crohn's disease, - neither of which he manages - he now has a catheter to drain his urine and possible enlarged prostate.

The Crohn's diagnosis ( jan 2016 and before the dementia diagnosis) only came about because I TOLD HIM HE WAS NOT WELL.

The emergency surgery to save his life ( jan 2017) only came about because I TOLD HIM HE WAS NOT WELL

The insertion of a catheter ( last week) only came about because I TOLD HIM HE WAS NOT WELL.

All the above conditions are serious, and some life threatening.

After much thought I have come to the conclusion that :- I do not like cleaning up after him, multiple instances that I will not bore you with. I do not like living as though alone, but with someone in the house. I hate the dementia that has taken him BUT the thing I most hate is the responsibility of constantly watching his health, his behaviours in case there is a down turn because he does not notice.

Does that make sense?

I am considering seriously that I will ring Social Services and say that I do not want to take responsibility for the ongoing health of someone who has serious medical conditions. This week, we have had 3 out of hours doctors, 1 GP, 2 paramedics, 2 district nurses, and one practice nurse at the house.

Am I being unreasonable? I still love him, but I don't think I can live with him
Mary it makes perfect sense and certainly not unreasonable. It's too much responsibility for one person and certainly too much heartbreak to cope with. I love my husband ( married 50years nearly). I couldn't possibly cope with him being at home. His consultant made that clear to me after his diagnosis of strokes and dementia. I wish I could. Have times of feeling I've failed him. This latest problem I've encountered with a fall and broken wrist..... I could only just look after myself. Being snowed in with poor hubby at home, no help, all makes me realise it's better for him to have 24/7 nursing care.
I fear Mary, that you trying to cope eventually will be life threatening to you. You have been remarkable. Remind yourself of that. You don't have to live with him. Doesn't mean you don't love or care.
Mary, this is TOO MUCH. It really is time he was in a nursing home with 24/7 care, where trained medical staff are on hand 24/7.
What good is it doing to hang on any longer? His conditions will be sadly worsening all the time and your mental and physical wellbeing are now under really serious threat.
I know how hard it is to put your own health and wellbeing first, but if you don't, he's only going to make you very, very ill. We all have our breaking point. I've met mine. There is no shame in saying "I can't cope with all this any more".
I was told by the head of a ward that my mum was too frail to live at home any more, even with live in help. Although the rehab hospital she was transferred to thought differently, mainly because they wanted their bed back when she wasn't going to get any better, I knew going home would only result in yet another failure, and we'd had more than enough of those already.
Pet was told by a consultant, is there a consultant you know and trust that could take the responsibility for that final, worst decision of all, away from you?
What is the GP doing?!?!
Mary
Sending enormous hugs to you as been in such a similar position recently. I must admit that there was a sense of relief when Dad spent his last few days in a nursing home. It took that final pressure away and meant someone else took that life and death responsibility when Dad was so close to the end. Perhaps that's where you are now, there is no shame in handing over the final stage to a full time care team. I'm sure you would find they all had enormous respect for you having managed solo for so long.
You are being entirely reasonable. He needs more professional 24 hour assistance and you need to take care of your own health. Big hugs from me too.
Mary
If I remember correctly you are not married to him are you? If that's the case then I think it is easier, legally at least, to walk away. Do please check out the situation with a solicitor, particularly as regards any property owned or lived in jointly, before you make any decision.
I also think he has a family who could takeover the responsibility., which is different to abandoning to the mercies of the 'system'.

Remember each person's situation is individual to them. Some one who has a had a long marriage or family relationship to their caree might come to a different decision, some might be quite envious of your options

Kr
MrsA
Hi folks, thank you for all your help and opinions...


in answer to some of your thoughts...

we are not married, we do not have children together, we do not own our house, but rent. He has no savings, I have very little, but am trying to add to them.

The GP has told me today that the only way out of this situation for me, is to leave the man I still love.

That will mean that in the last year I will have lost my man, lost my business and lost my home... too many losses. It also means the expense and hassle of relocating.

It seems as we are not self funding, Social Services will keep him here for as long as they can, and will send more and more carers in to do the things I cannot/will not do, as it will always be cheaper than residential.

I have decided that I have to carry on - BUT I will be contacting Social Services to ask for much more money to fund realistic respite for me. The Doctor agrees this is something he will support me in. I currently get one overnight stay per month for himself.

Secondly, I am going to book a holiday for myself - just 5 days - and go on a coach trip, and tell his children that one of them must come and look after him, and if they say 'no' I will phone Social Services and tell them what I am doing and let them take up the slack.

thanks for reading
Simply put Mary I can't agree with GP analysis.

No matter how many carers come in (and it seems max is four times day from others on forum) if you say you can no longer offer ANY assistance then surely in terms of vulnerability residential care be only option for him. Frankly it sounds like what he needs now.

Am not for one minute suggesting or recommending this course action, never be so presumptuous, but perhaps 'sticking' it to GP like this is now needed.

I did something similar with my late father (saying unable cope him at home) and although his discharge from geriatric hospital was not blocked when re-admitted soon after (following fall when left alone) NHS seemed accept that my mother and I could no longer cope.

While it may very well be in SS interests to keep him out of residential care is it in his (never mind yours...) :-???