Does this make me an awful wife and what can I do to remain sane?

I put that yabu because yabu to think it makes you a bad wife.

You are not.

@creditdraper Would he consider counselling to help him come to terms with what life looks like now? Or would physiotherapy help him regain some fitness? I’m sure you’ve suggested all of this and more!

I would echo the advice of others. You need to look after yourself too.

You mentioned long walks. Can you get out the house for a walk alone or with a friend? It sounds as if he could sort himself out for a few hours while you stomp out a few frustrations.

I am a big believer in setting boundaries and your DH needs to make room for your needs in the relationship. He doesn’t sound a bad man, just disappointed and angry with his health.

As someone who has been there, you are not an awful person. BUT I think you should sit down with your husband and gently tell him what you have told us about his behaviour. I did care for my late husband until his death, he also hid the truth from everyone but me but he didn't "take it out" on me....but I have seen what you are experiencing in my professional life in the NHS. Its hard for some people to see their loved ones carry on with a normal life when they know that they cannot. You have been given some good advice about getting the help you need and I won't add to that but your husband needs to understand that he needs you mentally and emotionally strong.

My parents are in a similar situation although my father doesn't sound like he's reacting quite as "unreasonably" as your husband is. I say "unreasonably" because of course some of it is understandable... It's frightening to be so vulnerable and out-of-control. And for my father, what has been hard in some ways is coming out of hospital, where he was at the centre of everything and cared for very well by a fantastic team that met his every need, to home, where everything is not quite so controlled, the way forward is not my necessarily clear and the "service" isn't quite as good in various ways, because it is just my DM doing everything. It has been an adjustment for them both, although overall he is glad to be home.

My mother copes by setting quite stringent boundaries as to what she is willing to do. She goes out regularly with friends or on walks (sometimes borrowing the neighbour's dog) and she is clear that these activities are non-negotiable. She also still works part-time, which I think helps in some ways though it can be an extra stress. My father has not yet reached the stage where he requires significant care, although he is very tired and everything at home tends to fall to her to do now.

My tuppence-worth would be that you need to look to your own needs (because no one else will) and set out the minimum you need as a person to have some moments where you are living, not merely existing. Then I would make it clear to your DH that this is non-negotiable and discuss what you can do in terms of having a friend/another family member around, having family call and leaving food and meals to make it easier for him to cope with.

Good for you and great advice for @creditdraper.

If he won't discuss it, then you need to tell him straight how it's going to be. It's why they tell you on aircraft to put on your own facemask first. You also need to get paid help in. Find out what you might be entitled to.

It's really shit for him but it's also shit for you. He needs to realise the weight of his situation on you.

Name changed for this.

I am in a similar situation OP. I can offer no real advice because every case is different but one thing you must do is to make sure you are claiming every single bit of assistance and every penny of benefit you can.

There is such a thing as respite care where your partner temporarily goes into a rest home simply so you can have a break. I think you need to look into this for you own sake. I suspect he will not like it but I am afraid you might have to get tough with him.

It's not the retirement either of us planned and, for what it is worth, you have my sympathy. You are not alone.

There's a regular saying on MN that you can't set yourself on fire to keep someone warm. He may have chronic health issues but you don't. You can treat him with compassion and respect, but you're the one choosing to put your own life to one side to enable him to live his in misery.

If he needs personal care, then you shouldn't be doing it. Can you talk to the GP about getting him some support or a PA that can help you have some free time.

I cared for my Dad for the last 18 months of his life (cancer) and a year on I'm still recovering from the aftermath. Caring is exhausting. And that's why you need to balance your own scales. If he kicks off, let him. You're still you.

How about you tell him straight what is going to happen.
You're going to have some fun with your friends and he is not going to moan.
If he doesn't like it he can always leave. He's only controlling everything because you are letting him.

So @creditdraper from your clarification he doesn’t actually require full time care or anything like it.

However the limitations he’s imposing on you are so suffocating it makes you feel like you are a full time carer?

If you are going to stay with him then only you can make the changes. Start living for you and believing in you. Start making new life for yourself outside the home.
In time you will come to know whether this will work for you in the longer term or not.

If i were you I would downsize your property to a low maintenance one, even a flat in or near a city and join women's groups such as a they're group or a hobby group and make it clear to your husband that you need a life outside of the home. You're not running around with me, you're going out for meals and meets ups with like minded women.

Why can't you leave him, or at least why don't you want to?

Disability changes even the kindest of souls. The narcissistic behaviours to control their environment are understandable, only seen by those that live with them, and in any other situation would be classed as domestic abuse. It’s very common and you are not alone.

The love won't last if this continues. I'd advise you to be a bit more selfish yourself. You are under no obligation to do everything yourself or bend to anothers preferences. I know it feels easier to just put aside your wants but you are making a rod for your own back and setting expectations.
He may not be well enough for some of the things you'd like to do. Don't let this set a limit on you. Do some things with him that are curtailed, but then also do things without him that are then not limited. Do not put a limit on your own happiness, please.
You've said he won't entertain a rational discussion, so don't discuss, don't appease, decide what's right for you and inform him, in as few words as necessary, what will be happening. It must be this way if you are to retain love and respect for each other.
I'm in a very similar situation myself, so I do know of what I speak. I wish I'd done this myself years ago. It's hard to see though when you are in the midst and concentrating on coping.
Good luck.

Your description of his behaviour towards you is horrifying. In absolutely no way is that okay. Disability and illness can not only make you selfish, it can make you angry and bitter too. You do not have to put up with it. I think you need to have very strong words with him. Yes it's terribly unfair that this has happened to him, but that does not make it okay for him to mistreat you. You are allowed to stick up for yourself. Is there any chance he would go for counselling? It's understandable that he is frustrated with his reduced capacity, but it's inexcusable to take it out on you. When I first became disabled my DH and I went for counselling together for a while, and then I carried on by myself for a bit longer. It's a lot to come to terms with, but he needs to try. He's making both of you miserable.

NB You are absolutely NOT an awful wife.

I looked after my late OH for a number of years. He eventually died in a nursing home as his care needs were so high by then.

Throughout the whole of this time I continued to pursue things that were important to me - choral society, running a choir, being a school governor. I paid people to come in and be with him at those times.

I had worked in social work for many years and watched carers being crushed by the task, so made a conscious decision not to let that happen to me.

There is more than one way to care for someone - you can do it yourself and go under, or you can get help in, so that you stay sane. You are no good to him if you are burned out and becoming understandably resentful. You need some life of your own.

I have not missed your post in which you say he will not countenance reasoned discussion about the situation and he wants you on tap all the time. But he cannot have this without destroying you - and he has no right to do that.

I know this might all sound quite hard-hearted; but you can love someone, have great sympathy with them and care about their well-being without allowing them to crush you completely. That helps no-one, least of all your OH.

Just set up a chance to go and do something you will enjoy - present it to him as a fait accompli, and ask him if he wants you to arrange for someone to be with him while you do this. Once it becomes routine, he will get used to it. It is not wrong to do this - it is necessary.

I have never once regretted my actions since my OH died. I know it was the right thing to do. The social contacts I maintained have been the mainstay of my life since his death. Your OH has had a serious illness, but you know he is capable of normal behaviour because he can do this with friends.

You must start prioritizing your well-being too.

YADNBU. That all sounds horrendously difficult for you. As he won’t listen, I agree about counselling. Otherwise I would just tell him that you will be certain things and let him be as shitty as he wants about it - point out to him it’s partly this shitty attitude that is the reason you need a break and enjoy going out for a meal or walk with friends.

OP, you may be his carer but you deserve respect, if he doesn't appreciate how much work you do for him, it is actually very very reasonable to feel as you do.

Would marriage counselling help? It is not all about splitting up but it may help you both to see how can you work together around the new limitations and have a good life.

And remember, the more that you go out of your way to please him (or avoid the nastiness) the more entitled he would become, so the sooner you start talking the better. It will be uncomfortable but if you love each other, it will help, you don't want to wake up one day thinking you have had enough and are ready to walk away.

This must be so hard OP. hope you get a break soon xx

I'm so sorry to hear this. Your post could have been written by my mother in law actually, she's in the same boat. Her husband is now mostly bed bound and she does all of the caring and house keeping and everything She's extremely reluctant to get any help with him but she's made herself a total martyr. It's made her world very small.

I really encourage you to think about getting some help. If not regular day-to-day help then could you arrange for a carer to stay with him for 48 hours (or a friend, family members etc) so you can have a break, go away, visit family etc. we really wish my MiL would do this for herself.