I Hate him

[DeedledeDee]

Been with husband since 1976 at age of 18 and married since 1984.
I know it's been over for a long time.
I can't stand being near him.
No cuddles or anything last 12 years.
Moved into my own room 4 years ago. Enjoy the space. We bicker a lot and I am always tense when he is around.

Even my son says he is unresponsive and repressed. The thing is I dream of getting a wee flat somewhere but we are both carers to adult daughter who needs round the clock care.
I'm now 63 and facing a very lonely old age. He is 70 and set in his ways.
I like going out without him and before Covid went to yoga,keep fit,walking etc. All has stopped and anyway can't leave daughter.
Has anyone got any advice please on how to survive this?

I sit on my own in evenings with the dog ( he hates dogs and kids).
I know I should have left years ago but it's too late but I need to try and find a life of some kind .
I feel very unloved and that I'm just a housekeeper

It's never too late
You can find a new life of happiness , kindness , fulfilment
Do it ! You deserve it

I'm so sorry that you're going through this.

You said that before Covid you used to go out and do things you enjoyed, but you can't now. Why can't you restart those things? Most things seem to have restarted now (I suppose that depends where you live, but in UK they have) or are about to. I understand you have your daughter to care for, but what did you used to do when you went out? Could you do that again?

I think if you could restart those activities that would be a quick and relatively easy first step to feeling a bit better and stronger.

Medium-longer term though, please don't give up on being happy. I understand that you have the additional issue of your daughter's care to resolve if you were to split, but that shouldn't be impossible. Don't dismiss it out of hand. So long as you didn't move too far away, could you still share her care?

What is the plan for your daughters long term care? Can you start planning this around the idea that you and her father slowly withdraw from being her main carers. Then you will have time and space for yourself.

I agree that it is never too late, could you be using your DD care as an excuse not to make the break? If your DD did not need the care would you leave, does she live with you?

If so would you have to make a choice of who she lived with and would your ex DH still provide care if you moved out?

Is the full time care a recent thing since lockdown? I ask because you said you went out before hand.

Does your DD have other carers helping out or could she have an assessment to get help, and you to have some respite?

Maybe you should consider your dd going into sheltered or residential care? At some point it's going to happen, isn't it, as you get older and less able to do her care, and maybe it would be better for her emotionally to have this change while you're both still fit enough to visit regularly rather than waiting until one of you dies or becomes too ill to manage?

Yes DD lives with us , she has been unwell with a degenerative disease for the last 10 years since age 21, She is now 31 and for the last 5 years has been bedbound and we have to do everything for her,

Social work have been useless and will not provide carers as her needs are sporadic, that is she needs say for example help toileting, then a rest and then a while later needs a drink , then another rest,

Because of that they wont send carers in as the carers need to be occupied for the full half hour or whatever that they arrive for . Also the carers wont tidy up or wash her cup or whatever when there is a quiet moment, as they "dont do housework"
My daughter cant speak or eat solids and cant get to a toilet and we have to help with all these things,
She hasnt had a shower for a year and cant tolerate bed bath, She cant take noise or bright room so lies in a dark room all day with dark glasses on and ear plugs and we have to not use the hoover or washing machine, Althouogh obviously we have to wash clothes sometimes but we try not more than once a week and have to ask .
So it affects our lives a lot. We cant watch tv without using subtitiles and actually never go out, There is a small window in the mornings for going out between 11 and 1 pm but she may need help with something so one of us usually has to stay home,
I think this has all impacted on my relationship with DH as we dont actually get any fun in our lives or respite and its all quite depressing,
Yes she will have to probably face residential care in the future but says she wont do this till we have "kicked the bucket".
She cant speak but spelt it out on the alphabet board we made for her,

This all sounds really really difficult. I actually think having read your last post that residential care may be the best thing for your daughter even if she thinks not. She doesnt have much of a life at the moment (not your fault, what can you do?) A residential home would be able to cater for her needs, take her out, provide entertainment and suitable care

And you would be free to live a life you want

Do you maybe think you are letting her away with a bit much op? Yes it's awful what she is going through but a lot of what you're talking about, like only being able to watch tv with subtitles, is just her being a little madam.

I get that maybe she feels left out when you guys watch tv without her? And that's why she doesn't want that. But op, put a foot down ffs.

It seems you are tolerating way too much shit from both the other adults in your life.

And its never too late to leave a shitty partner. You could have 40 years of your life left. If someone told you you could spend it in a jail cell, or choose to leave, would you stay in the jail?

If you can afford to put your daughter into care, I'd seriously consider it. But one way or another, get shot of the hubby.

But she doesn't have the only say in what happens.

You've done this for ten years and if she's not getting washed etc, then maybe she'd be better in residential care?

It must be really tough all round.

God that sounds really hard OP. If there are two of you, why can you not provide respite for each other? You could resume your activities whilst your H looks after daughter and vice versa?

There should be local carer's groups who can provide advocacy for you.
Your daughter is surely entitled to a social work assessment and an individual budget which you could use to help pay for care?

Do you maybe think you are letting her away with a bit much op? Yes it's awful what she is going through but a lot of what you're talking about, like only being able to watch tv with subtitles, is just her being a little madam
What a cruel thing to say - you no nothing about her medical condition or the extreme distress she lives with.

For heaven's sake, OP, you deserve a life too. Forget your husband for a minute - your life with your daughter means you don't have a life of your own. If she went into residential care you could see her for a couple of hours a day and you could resume your own life.

As for your husband, I'd deal with my daughter first and then as soon as she's being looked after I'd move somewhere else.

Do you own or rent your home?

You’re all desperately unhappy and something’s got to give.

I too think residential care for your daughter is the starting point.

Unfortunately your DD is only thinking of yourself.

I expect you have a long battle on your hands to get her into residential care so I would start that battle now if refusing to care for her abs telling social services they need to step up.

I am not surprised you are unhappy and struggling so much

This is not a normal life, no wonder your relationship has suffered. Have you thought about private carers and direct payments from social care? They can assess her as having some hours but you have a budget rather than carers coming in and I am assuming she has a decent income from benefits which could help towards care.

How much of her lifestyle does she choose, as there doesn’t seem to be any compromise on her behalf. I can’t think that someone who cannot get out of bed and cannot wash or eat or talk and cannot tolerate noise or light would not qualify for a care package?

Why can’t you make a noise if she has earplugs in?

Saying she won’t go into residential care unless you are dead is very selfish.

You need some respite, you may need to force some issues for your own sake.

The thing is she has this condition where she is hyper sensitive to noise, light and touch and I know it seems she is being very petty but the reality is that this also happens to other people who have this very severe illness.
Oh and social work know about the struggles we are having regarding lack of respite, the effect on our mental health and everything,
Ive been in touch with Quarriers but they cant give any practical help, just an ear to listen to,
We got an advocate for my daughter but the advocate didnt really help much and didnt seem to understand the severity of the situation, There is very little research done for it, its not funded in the UK.
We live 6 miles from the nearest town, we are in the countryside and the social work keeps going on about carers not wanting to come out so far, how low paid they are , etc etc
Im on medication for my nerves and the problem is we have asked about residential care but it would mean the local old peoples home , Also they have said that even if she was in her own flat in the local town then that she would get 3 - 4 short visits a day and they wouldnt give her as much care as we are giving her in terms of keeping her comfortable and seeing to her and also giving her some company when she needs it,
She has said when she is really down that she wants to end it all and I think if I had been in her situation I would feel the same,
The deterioration has really accelarated over the last couple of years and its no life at all . She has lost her 20`s to this disease for which there is no cure and probably no chance of recovery.

Private care and direct payments also been mentioned but we would need help with the paperwork side of paying someones NI contributions etc as Im not the smartest tool in the box !

It sounds as though you're allowing your dd to rule the roost. What a dreadful situation for all three of you. Really, it would be better for all three of you if dd was in residential care. They would be able to provide specialist care, make sure she was bathed and they would be able to provide entertainment. You're emotionally involved, obviously, and that affects the way you deal with her. You've only got a finite amount of time left and you mustn't waste it.

Can you have your own flat and just come to the house to give the care ?

If your DD has her own flat and carers then you can still go visit and be her Mum and spend time with her and give additional care.

So long as you carry on doing it all they will provide nothing.

If your DD employed carers direct then you use a payroll company.

Perhaps you need to sell up and all move to a town?

But if she had her own small flat in town, maybe you could also move nearby, either with or without your husband? Then you could visit daily, but not do so much of the physical care, just the emotional and social?

I think you may have lived with this so long you have got into the habit of making excuses of why things cannot change.

Both you and your DH are also entitled to be assessed by social services as carers.

You could get your own flat and visit your DD.
Your DD could ask about supported accommodation and you could visit.
Your DD could go into residential care and you could visit.
All of these would give you some time alone.

You can access direct payments and you can have help to set up and run the business side.
Your DD can use this to pay for a PA and she can top it up out of her own money. This way the care is tailored to her unique needs.

Is it a recognised degenerative illness are you tired of fighting the system? How come no one realises the severity of it, not the advocate, not social services, not Quarriers, not Carers UK?

You now seem to be in the mindset that no one understands and no one can help so there is no point in trying. It wont be easy but I think like a pp said you need to start making the changes now and stop writing off the help that is available.

Whether your DD wants it though, is another matter.

Is her condition recognised in the UK?

@SudokuZebra . Could you possibly offer any advice re rights and benefits for this poster ? Hope this does not offend Op or my friend Zebra