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

As it's sadly degenerative it's far better to change things now before you crack completely and can't go on.

I know change is hard in these circumstance. But it would be better for your dd to make these changes whilst you and your husband can support her and be there fo her. How traumatic would it be if you suddenly weren't able to care and she can to cope with a move. New carers etc.

I can't imagine how difficult this decision is but she can't expect you to be at her beck and call and have no life of your own until you drop.

@futureghost

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.

I know theres no excuse to not let your parents watch TV with some sound in an entirely different room to you. That's just being a brat. Irrigardless of how ill you are.

Light and noise sensitivity is one thing, and must be terrible. But I suspect she is playing up some of it in order to control you more. Not saying I dont understand why, because it must be awful to not have control over her life and so the inclination would be to exert control over others wherever and whenever she can. But op has a right to a life too. What she wants is just as important as what her daughter wants.

You need to get social services to help. This is a very difficult situation for you. You need help with your dd. Being unable to use machines in the day is extremely limiting. You need to get some respite care for her. I can’t advise on your dh situation: does he help care for your dd?

I'm sure citizens advice or someone from the charity could help you fill out the forms if you struggle with them, op.

I work in care @DeedledeDee. Believe me when I say that people who are sick and requiring the level of care your daughter does can also be the most manipulative.
The more control they lose over their own life the more they try and control family members/staff/health care workers etc. I can see it in my work situation, you are probably not detached enough to see it in your daughter.
You need to get her in residential care, the level of assistance you provide for her is no longer sustainable (or not for the long term, even if you're managing now). With regards to carers coming to your house, as you have said you are rural and many are using their own car, they just won't want to do it. They are on minimum wage and any extra wear and tear to their vehicle will come out of their own pocket....they get a small amount of money towards fuel usually (not nearly enough) and I can't blame them for not wanting to go out of their way.
It will be a fight, money is tight in social care so if family is available they will keep her out of the system as long as possible. You need to be less available and start kicking up a fuss.
Once you have a plan for your daughter and some space to think you might be able to focus on the situation with your husband. Things will hopefully be a little bit clearer when you have some breathing space.
Very good luck to you

It really does sound like residential care is needed here if she hasn't been washed for a year?

I've no experience but can see that you're too close to be able to provide her with the care she needs. Not being washed for a year is terrible.. also not being able to do anything in your own home is also terrible and not sustainable.

Residential care with her coming on visits is what she and you need. That way she can get the level of care she needs and you get some life back.

The thing is I asked about residential care but she absolutely refuses and accuses me of not caring.
In order to get through each day and cope ihave to kind of shut off emotionally as well . It's a coping mechanism. I have told social work back in March I don't want this job as a carer,I want my life back . If she won't go into residential then we can't force her can we?
I have 4 other children I can't visit because of this situation I'm so fed up with walking on eggshells and living in a dusty house that I can't hoover
We moved here mainly for the garden and it is now unmanageable as we are not able to mow the grass due to noise of lawnmower.

How will she cope if you become so worn down that you can no longer physically care for her? She sounds incredibly manipulative and selfish.

If you were to get Direct Payments you can opt for something called a ‘Managed Account’ where a company can deal with all the NI, tax and payroll for you. It does mean a bit of form filling initially - you can get help with this, but once set up you just have to send them details of the hours the PA works and the rest of it gets done for you.
I use a managed account for my sons Direct Payments and it is a lot easier.

If she lives in your home you can evict her.

Or leave temporarily until she gets the message you aren't willing to sacrifice your life for hers.

I think you are deflecting the blame onto your H because you don't want to honest and say you cannot look after DD anymore and go against her wishes. It's clear to us that being her full time carer is killing you.

You don't have to, she may not want to go into residential care but then she has to sort out something else that isn't you being utterly broken.

You could maybe make her homeless 'officially' and then she would have to be offered care of some sort. Not sure how you would go about this though.

Perhaps speak with adult protective services? Explain that you cant take care of her anymore.

Citizens advice might be worth a call too.

@RandomMess

If she lives in your home you can evict her.

Or leave temporarily until she gets the message you aren't willing to sacrifice your life for hers.

I think you are deflecting the blame onto your H because you don't want to honest and say you cannot look after DD anymore and go against her wishes. It's clear to us that being her full time carer is killing you.

You don't have to, she may not want to go into residential care but then she has to sort out something else that isn't you being utterly broken.

I second this.

OP, has your daughter been seen by a doctor within in the last year?
Can one of your other children help for even just a couple of days as so you can have some sort of break and space to think?

You've received some really good, helpful advice from.previous posters that I hope you will take.
Please try for your own sake to change something in this unsustainable situation.

The noise issue....right, I work with severely autistic young adults with huge special needs on top. Many of them are in residential and have sensitivity to noise. They wear the big ear mufflers, similar to what you would see if you worked at an airport guiding the big planes back. Get those plus earplugs. There seems to be a bit of manipulation going on with your daughter and your are bowing to this. She will probably not want to wear them at first but leave them with her, start hoovering, mowing the lawn and putting the tele on. You have to live your lives now. However much she complains it has to be done to save both you and your husband. It is so sad that no one is listening to you x

Yes neurologist and GP came out recently.

Thank you all for your advice , I am looking into the possibilities of residential care .

Then maybe can get some breathing space to assess everything else,

Contact your local carers centre and ask them for some support too.

If you want support to push through the resistance and difficulties please keep posting, you can start a new thread if need be.

You may get friends/family:posters saying they would never put their child in a residential home but they haven't even spent 24 hours in your role have they?

Your DD is on borrowed time as to how much longer you can cope.

@DeedledeDee

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

I'm so sorry reading all this it's very sad and you deserve a life yourself

Speak to your GP it's clear she needs residential care otherwise you'll make yourself poorly and you won't be able to look after yourself never mind anyone else.

I employ private carers for my Dad and I use the Penderells Trust to do my admin and stuff they're brilliant - worth a call to them

www.penderelstrust.org.uk