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

[creditdraper]

Hi all,
A quick run down to set the scene. I was just about to retire when I suddenly found myself carer and Power of Attorney for both my parents who had different forms of dementia. Through everything that was involved, it brought me to my knees and was a 24/7 job. I also had a husband and family to be there for as well so all in all it was a very difficult time for us all.
My parents passed away within 6 months of each other during lockdown and COVID. They were in a Nursing home by then as they were too ill to be at home.
The years that I did everything for them took its toll. About a year afterwards I was just beginning to feel as if I was getting back to concentrating on myself and becoming healthier when my DH was diagnosed with cancer and needed a very major operation after lots of chemo. He required a lot of input and caring from me and still does, although to his friends and family he seems back to normal. He will never be back to normal and although he has recovered as well as could be expected has changed significantly in the things he can and can’t do. Without going into all the detail which would be outing, here I am back as a carer again with not much to keep my spirits up.
I know I must sound ungrateful but he has lost interest in most things because he now gets very tired and breathless. He used to be an extremely active man and is a young oldie if you know what I mean. I feel that time is very short now and that during all the years that this has been happening (with my parents and DH) that I haven’t had a decent break or even a retirement yet!
Our relationship has gone down the pan because he seems to see me as carer and housekeeper now and I literally get no time to be myself and have fun unless we visit or have a visit from friends. No holidays, meals out, long walks etc - all of which we used to do among other things.
I love him, don’t want to leave him, but I can’t see things changing and I feel that the retirement time now is truly wasted on care, shopping for essentials and housework etc.
I’m not sure what comments I want to see in reply - it just helps getting it all off of my chest.
Thanks if you’ve reached this far.

@DrJoanAllenby Thank you for your idea of downsizing - that seems so sensible and it certainly would be something to consider.

@GreatTheCat I wouldn’t consider leaving him after what he has been through. He is at heart a good man and is going through a very tough time which is impacting all areas of his life, including mine.

@NinaOakley You’ve hit the nail on the head with your last post.

@Welliwould Thank you. Good advice.

@Mischance You have spoken so much sense. That has helped me a great deal and yes, I need to stick up for myself more and be more assertive.

Thanks also to everyone who has replied. You have helped me too.

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.

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.

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.

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.

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.

@StormingNorman He’s not a bad man as you say. He’s been through a terrible time and I love him dearly even though I don’t like what he does sometimes. It’s very hard watching his reactions to how his life is now.

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

You are not.