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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

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Original poster

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

34 replies

creditdraper · 20/04/2024 13:38

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.

OP posts:

Woahtherehoney · 20/04/2024 13:42

Oh this is so hard, I am so sorry.

Have you looked to see if there are any respite options at all for your husband? I know he may not be keen and neither will you potentially, but you absolutely cannot pour from an empty cup and need to look after yourself too. Is there carers or someone who can sit with him for a day so you can go out and do things or visit some friends for a day? Or lots of care homes offer short stays of 24/48 hours to give you a slightly longer break.

Please look into something as you need some time to be yourself and not just a carer.

museumum · 20/04/2024 13:43

Is he too ill to go out for a meal or go on any kind of holiday or does he just not want to. If it’s the former I’m sure you could find something suitable to do together and then supplement that with you doing stuff for you - join a women’s walking club or something? Can you get a respite carer to allow that?
if it’s more that he’s lost the will then I think maybe some counselling could help. Together or individually.

StormingNorman · 20/04/2024 14:00

He seems back to normal to his friends. How much care does he need? Are you actually doing a caring role, or is it just that your options have been limited by what he can and cannot do now?

NinaOakley · 20/04/2024 14:23

Not at retirement age here yet, and we are dealing with physical and psychological symptoms. Not many here will want to hear it but the thing that makes me feel cared-for, happy and like I have something to live for as a spousal carer is having an affair.
Respite, carers charities, medications, a pet, well-meaning friends…
None of them take the stress out of my shoulders, make me sleep properly or make me smile even a quarter as effectively.

Very difficult to reconcile with my faith, feminism and values, but true.

NinaOakley · 20/04/2024 14:28

And no, you are not a terrible wife. You are a human being on whom society is placing unbearable expectations. ((Very unmumsnetty hug)) please feel free to message me if you would like to. Well meaning but presumptive people are one of the biggest stressors in my experience.

maxelly · 20/04/2024 14:40

I think it's time to be a bit selfish and make things happen for yourself. You've been cast in the caring role for a long time now and as you've discovered it's pretty thankless and no-one comes to rescue you or take care of your needs, sadly you're going to have to do that yourself as well. Of course that doesn't make you a bad wife and I don't think you have to end your relationship either if you don't want to, but you need to take charge rather than just slavishly responding to what others want of you.

I'd make yourself a bucket list and start working your way through it, you can start small e.g. going out for a walk on your own, building up to weekends or holidays, on your own, with a friend or drag your DH along.

What are your DH's needs now? Can you throw a bit of money at solutions, whether that's cook meals so he can eat well even if you aren't there to prepare it, a cleaner/gardener/laundry service to relieve you of some domestic load, a helper/carer to keep him company if you are away and make sure he takes medication or gets out or whatever? Do you have adult children and if so can you enlist their help?

TeenLifeMum · 20/04/2024 14:47

Can you talk to him about how you’re feeling? Not in a moany way but in a “what small changes can we make to help us both enjoy this stage of life?”

itsjustbiology · 20/04/2024 14:53

I know someone exactly the same as you are now OP. I so feel for her as she gets angrier and more disallusioned every day. It is so difficult and so sad.She is torn between a rock and a hard place.I am sorry you too are going through this.You must be very lonely too. I have no advice to offer sadly that would help.

ThreePointOneFourOneFiveNine · 20/04/2024 15:02

You need to get some respite care so that you can have some time for yourself. I'm disabled, and while I don't need huge amounts of care, I am dependent on my husband for quite a lot. He goes away a few times a year for a weekend to visit friends, and he goes on on his own quite a lot. If I'm really struggling we'll make sure I've got things planned with friends and family.

Disability and illness can make people enormously selfish. It's understandable, but it's not okay. Your happiness matters just as much as your husbands. Would he object if you went out without him?

wombpaloumbpa · 20/04/2024 15:03

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.

Original poster

creditdraper · 20/04/2024 19:29

Part of the problem is that he has changed so much, becoming very selfish, always right, wanting to be with me all the time and sulking if I do something on my own for myself. He can be very nasty verbally ( for example if I don’t manage to cook dinner when I’m unwell even though I’ve arranged something for him to put in the oven)but charming towards me when we are with friends. I realise he must feel very vulnerable but it is becoming very claustrophobic for me. He won’t entertain any rational discussion about the situation and prefers to sweep it all under the carpet with the result that it is driving me away and I am developing a real dislike for him. He isn’t bed bound or anything as some have suggested, just becomes very tired easily which impacts on any planned outings. I just don’t feel appreciated or cared about anymore and it’s a very lonely place for me to be in. Sorry for the self pity. Like I said earlier, I don’t need anyone to solve it for me just a listening ear as it’s difficult to talk to family or friends.

OP posts:

Original poster

creditdraper · 20/04/2024 19:31

Thanks for all your replies.

OP posts:

coastalhawk · 20/04/2024 19:35

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

NotAgainWilson · 20/04/2024 19:37

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.

TheSnowyOwl · 20/04/2024 19:39

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.

Mischance · 20/04/2024 19:56

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.

Mischance · 20/04/2024 20:01

NB You are absolutely NOT an awful wife.

ThreePointOneFourOneFiveNine · 20/04/2024 20:17

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.

Welliwould · 20/04/2024 20:19

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.

NinaOakley · 20/04/2024 20:19

creditdraper · 20/04/2024 19:29

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.

GreatTheCat · 20/04/2024 20:22

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

DrJoanAllenby · 20/04/2024 20:25

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.

FlexIt · 20/04/2024 20:25

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.

WhisperGold · 20/04/2024 20:34

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.

HesterPrincess · 20/04/2024 20:37

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.

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