Guilt at wanting to separate from disabled husband

[Midnight19]

Should I honour my marriage vows and stay? I’m 54 and my husband is 58. Together for 26 years. He has been prone to accidents and health issues and not worked for most of the time we’ve been together. He also has nocturnal epilepsy so never driven. I have taken on more and more and now registered as his informal carer. I have always worked full time and covered most bills and mortgage. Unfortunately no children. Now he is waiting on an operation to fix a fusion in his foot. He has let himself go, now 26 stone, not brushing teeth, not showering, looks like he will need a wheelchair indoors soon. I assist him with dressing, undressing, showering (when he wants), all drinks and meals and run the household. We are waiting for a social care assessment as I’m done. I don’t see him as a husband anymore and have no interest in having a sexual relationship. Actually I resent him. I told him months ago how I felt, suggesting divorce or an open marriage maybe. He buried his head in the sand so yesterday I raised it again and said he needed outside help from social care and to not rely on me so much as I wanted to separate. Now I feel even worse as he says he can’t go on without me. I feel stuck and holding all the responsibility again. He’s told me that otherwise I have to sort out full time care for him. Do I give up and stay? I know the grass is not always greener, giving up our home, trying to rent with dog, being on my own. But I’m tired of being the grown up.

Actually, statistically, it's the other way around.

Here, he's not willing to do what he can to help himself at any level and wants her to do everything. And then some. I wouldn't spend my limited remaining years dealing with that attitude either.

That is not what is happening. The men who leave their wives normally do this not long after the diagnosis. OP has been his carer for years. OP works full time and does everything in the home as well as caring for him. Many of his medical problems are self-inflicted due to his obesity. OP has said:

'Sadly my husband never contributed fairly either housework or finances, and has resisted other support, even widening his social network, making our situation even worse and escalating it quicker to this impasse.'

He could shower and brush his teeth, but he doesn't want to. OP has shouldered the entire burden of keeping them financially afload and providing care to a man who makes no effort to do any self-care or to consider his wife's wellbeing in any way.

I wouldn't spend my limited remaining years dealing with that attitude either.

Fully agree. He shouldn't be planning to exhaust and take advantage of the OP as she ages. It's outrageous.

Op in my practice I often see the caregiver becomes ill and dies while the disabled spouse lives on. This is because no one is taking care of the carer not even themselves. Your back your knees your heart your immune system are at great risk being a full time caregiver and working a job. He can’t do anything for himself??? You will not be able to manage him in and out of a wheelchair or on and off toilet many times a day. I really don’t think wedding vows of sickness and health meant…lifting carrying total care. You have done enough now you need to take care of yourself. If it’s more palatable to you say…my doctor recommends I stop lifting/ carrying (whatever) as it has affected my own health.

The financial impact of divorcing someone with a disability shouldn't be overlooked, I was very lucky that my disabled husband decided to leave, it has freed up the rest of my life, but it was extremely expensive to pay him out and I am left with the care of our children.
Good luck OP, may your next 30 years or so be splendid.

There are women on this thread who have talked about providing long term care to their husbands until death/with no intention of stopping doing so who are still saying the OP should leave someone who pays no thought or consideration to her.

Actually, there is an argument for women copying male behaviour in a lot of instances, because I think it would be a rare man who sacrificed themselves for a spouse acting like the OP's husband has, for years.

This is what I'm still confused about .
I know someone with one leg and they still shower using a chair and dress themselves and so on.
I just don't get why he needs you to do this stuff.
Unless it's now because of his weight ?
Would his foot improve with weight loss?
He does sound like he just likes you doing everything and then you feel you can't leave him

There's that old saying, isn't there - don't set yourself on fire to keep someone else warm.

He is expecting - actually demanding - that you act as his full-time 24/7 unpaid carer, nursemaid, cook, housekeeper, breadwinner and, let's face it, servant for the rest of his life. He makes no effort to mitigate his own symptoms or care for himself by doing what he should be able to do, but doesn't. He's a big man, and physical care of someone like that needs professional input.

There comes a time when you have to think about putting your own health and wellbeing first, and this is it. You have reached crunch time, and it would be better to take that decision now than wait until crisis point, when you fall apart completely and literally can't cope any more.

Social services will be more than happy for you to continue doing what you are doing, and will be very keen to fob you off and ignore your requests for help if they possibly can. So you are going to have to be forthright with them.

Yes. I cared for my husband until he died. Over the phone, his daughter tried to comfort me by saying "He'd have been in a home if it hadn't been for you," which horrified me somewhat, given that DH was compos mentis and did as much as he could for himself. (I had to help him to get dressed because of his hemiparesis - one hand didn't work and the other was a bit shaky.) He showered by himself using a shower chair, but I had to help dry him, etc.

Even though he couldn't feel his left foot, he still managed to walk - after 4 months in hospital.

It sounds to me as though the OP's husband simply expects to be waited on.

I'll add that when I was in my 50s I had to have both my feet operated upon because I had a genetic condition which had caused me increasing difficulty - I was getting to the stage that I couldn't walk.

The operation was very painful - I was in agony for a while and had to use special shoes and crutches. One foot didn't quite set the way that it should have and I'm stuck with a big toe that doesn't touch the ground. I've since been told that a tendon was probably cut by mistake.

Even so, I'm still walking and driving and cared for my husband following his stroke. I'll note that he was an absolutely star when I was recovering from my op.

My dad's feet were worse and he had a much more drastic op. After the recovery period was over, he went back to work as a coal miner.

The OP's husband has let them both down badly.

Thank you. This is is the situation precisely.

Leave him OP. Don’t feel guilty.

You could instead feel guilty towards yourself for not living your life. You’re not old yet - be happy and live well 🌺

Chances are he’ll also find independence when he is forced to do it. But you can’t help him any more.

Just do it. Don’t look back. Be brave and put yourself first for the first time. Live your life.

In this house, it’s me who is disabled. Not as badly as your dh but … still serious enough that I’m not doing any cooking/HW.
He doesn’t need to be my carer though (eg for showering).

When you split (this is what I’ve been told by so,I it or when I looked at divorce)

• Assets split 50/50 as a starting point
• judge would look at how much he’d need to live on his own (bearing in my mind tye new rules with PIP and UC!). This could mean either spousal maintenance or the split being in his favour.

This will depend a lot of your own income.

Then he won’t get housing easily, esp if he needs the house to be adapted. There is no social housing adapted 1 bedroom. So it would mean gping private. And even then bungalow/flats are like hens teeth.
He should get a carer/PA. When they can actually find someone. Again there are several solutions but none of them are straight forward.

I don’t know your dh but his ‘letting himself go/not washing etc…’ are likely to be the consequence of him being ill.p rather than malicious

Chances are he’ll also find independence when he is forced to do it

That sort of comment is along the same lines than ‘if we don’t give money to disabled people they’ll find a job’ ie ALL disabled people = lazy scroungers.

Thats ableist as fuck really.

Your situation has struck a chord with me OP. My partner has health issues (physical and mental) and has not worked for several years (he was working when we met). We lived together for a while but, on top of other issues, I came to resent the fact that I was carrying the entire financial load AND at least 50% of the domestic work (he would argue with this but that was always my perception).

We are still together but now live separately, which works much better for me - I have been able to purchase a flat for my daughter and me (we were renting before) and I don't feel I am "carrying" someone

I still love him deeply, and am enormously attracted to him. I don't see myself even being with anyone else. But I did not carry him in my womb for 9 months and I don't see him as my full time responsibility. Of course he comes over some weekends and I cook for him and do some washing for him and all that - I don't mind that at all - but not 24/7, I didn't sign up for that.

If he gets to the point he can't live independently, I really don't know what I will do. Certainly won't live with him again unless we are married (he owns property so that eould at least give me financial security). I am not sure I could see him go into a home, he is the love of my life, however irritated I beg at times. Anyway, luckily we are not there yet.....

Sorry, the point of all this rambling - it is NOT selfish to think of yourself OP. Especially as in your case it sounds like the love and desire is gone. Do you even like him any more?

Be generous in the financial settlement if you like. (You don't have to be). But it's time to walk away. There is a whole life waiting for you out there. And you did not give birth to this man - he is not your responsibility......

He's made his own situation worse and even though you warned him he didn't take heed and try. There is no excuse for not cleaning his teeth. Put yourself first for once. Phone SS and tell them you're done. They will have to give him an assessment of care need.

@WearyAuldWumman you have no idea what the OP’s dh issues are.
Don’t make sweeping statement like this because your dh was a ‘good disabled’ who went way over to still be independent and what not.
You have absolutely not idea if the dh can do more. Or not.

I agree with this, OP.

I mean not even brushing his bloody teeth - no wonder you are done with the whole situation. You didn't take vows to be the sole person looking after him ie not even he is looking after himself.

Don't keep on caring. It's backbreaking and heartbreaking work at the best of times and unendurable if you don't care for the person who needs the care. It's not selfish, it's about having a life. It's not really for you to sort out the care for your husband, it's for the social worker to assess and organise what they think he needs. Make sure that you are there for the assessment and make it clear that you are leaving; this might sound extreme, but maybe file for divorce This is so they don't make your labour part of the care package. It sounds to me that sheltered housing or extra care housing might be a good alternative for your husband. This might involve selling the house and splitting the assets but the finance team will do a financial assessment, help and advise. It will do nobody any good if you get ill. It will be hard to do these things, and there is no such thing as a guilt free option. Remember, too, that it might be good for your husband to be forced to do some things for himself rather than leaning on you.

This.

Speaking as a retired professional, I have seen this scenario many times, actually both with men and women they become disabled and seem to gain a sense of being entitled to care from their spouse even having things done for them that they could do for themselves...the thing is that there seems to be a social expectation that its ok for the man to step away but not for the woman. OP it won't get any better. My suggestion is to be honest with your husband about your intentions so far as you can be and to step away. Don't let people on here guilt you into staying.

You can't pour from an empty jug.

My Dad developed dementia. He couldn’t make it to the toilet, let alone brush his teeth. He got fat because he was like a child - food was his only enjoyment. He could no longer speak or recognise anyone he had once loved. My mum stayed with him, even though their marriage was obviously in name only. She did that for the person he had once been, and because she had loved that person. She also had a lot of help and eventually he needed more care and he went into a home.

The question for the OP is: have you ever loved him, or at least liked and respected him? Has he loved and/or respected you in the past? If so, then perhaps he deserves some loyalty (not to the point of martyrdom though). If your marriage has never been good, then it’s harder to stay. One thing is for sure: whatever the answer is, you need more professional help to deal with him. I always told my mum that she needed to live too - she couldn’t (metaphorically) die with him. The same applies to you.

We will all end up decrepit and dependent on others. Whatever people say about “keeping myself in shape” etc, there will come a point when we will ALL need care - even Mumsnetters. Something I think is worth remembering when deciding how to treat the disabled/elderly.

@ButThisIsMyHappyFace there is a huge difference between your parents situation involving dementia and be a man who is genuinely incapacitated and a man who is doing nothing to help himself and is happy to watch his wife run herself into the ground because he believes she should wait on him

I'm fairly certain that the OP would have told us if there were other problems.

Oh - and for your information, my husband wasn't "a good disabled". He was a good man and the love of my life.

If you look at my post, I didn’t actually tell her to do one thing or another. I think she’s in a bind and I don’t envy her. I was trying to make her think about her relationship with him as a whole, not just since he became disabled, as a way of looking at it differently and maybe finding a solution. Caring is absolutely bone-wearing, but if you ever loved the person then maybe with some more support you can find a better balance. I wasn’t telling her to stay or go. If she’s never loved him or been loved by him then the disability is immaterial. If he was not disabled, would she still want to go? Only she can answer that and her answer would be fine either way.