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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Disabled husband driving me mad!!

33 replies

Joola · 02/01/2022 21:23

feel bad moaning but my DH is really annoying me!
8 years ago he was diagnosed with a rare blood cancer. The treatment was pretty gruelling and he lost the use of his kidneys so was on dialysis. During this time I looked after him, slept by his bed in hospital as he didn’t want me to leave him. Washed him, changed him, feed him, you name it I did it!! Unfortunately the treatment that cured him left him with no use of his hands and unable to walk properly. 3 years ago he had a kidney transplant and since then his health has improved. He’s struggled with his mental health, had CBT and counselling. I’ve always been there for him and looked after him, set out his clothes in the morning, prepared his breakfast for when he got out of bed, put his tablets in an organiser so he can get them easily, left his lunch when I went to work. He’s done NOTHING for years.
I’m now getting to the end of my tether as I think he could do more!! He’s stronger now and with another more effort I think he could do lots more but has just become lazy!! He needs to do more exercise but doesn’t unless I instigate it. I got him a personal instructor at our local gym, he hardly goes. He never visits his mother in the nursing home.
He can’t drive, he probably could if he took the trouble to do a disability driving assessment but never thinks to sort it out himself. After years of not being able to do things as he had a strict dialysis routine he still lies in bed till lunch time, I’ve given up telling him to get up. I feel he’s wasting the life of his kidney donor and that makes me extremely sad for the family left behind. I know it’s hard for him, he was a strong, 6 foot builder that everyone relied on. He just doesn’t try. It’s affecting my feelings towards him. I fought so hard to keep him alive, got him the best treatments. I love him but I don’t want to be his carer, I want to do exciting things and live the best life we can. We’re both in our late 50’s. AIBU to want him to try harder?

OP posts:
CatsArePeople · 02/01/2022 22:16

looks like you both need professional counselling

Scottishflower65 · 02/01/2022 22:20

Yes he needs to step up. Stop doing things for him. Tell him he has to do household tasks such as cooking evening meal. Expect more and you will get more.

Embracelife · 02/01/2022 22:24

Sounds like he is too used to you doing everything
Why don't you go away for a week?
Take some time out
Consider your long term options
You don't have to stay together

billy1966 · 02/01/2022 22:26

YADNBU

How have you kept going.

Santaisstilleatingmincepies · 02/01/2022 22:30

Straight up suggest he contributes more to the marriage or you wil simply hire him a nurse and leave him.

Sirzy · 02/01/2022 22:33

Has he got an OT involved? I wonder if they could help with getting him more independent

Zilla1 · 02/01/2022 22:35

If you look at it from the medical perspective you had when he was acutely ill, the effects of immobility when he could be mobile will be adverse so it will be for his own good if you decide to implement a structured programme of restoring all the activities and general daily living in a determined way.

Good luck.

5YearsLeft · 02/01/2022 22:36

OP,

I think most people will vote YANBU but if you need someone to talk to you about it… I’m a disabled spouse living with two people who help me (my husband and my best friend). For a while, my husband was gone on business and my best friend had to take over and after he came home, she couldn’t talk to me for a while. I was quite angry about it. After all, I was the sick one, right?!? Wrong. Yes, I was ill while my husband was gone, and yes, I needed her help, but I didn’t act like a “good” sick person. I would do things like “refuse” to take my medications because I wanted to sleep instead (it’s very important that I take my medications on a schedule or I’ll end up in the hospital) and she’d feel an overwhelming stress all the time not only that she’d have to do things like check I’d taken my medications but then also be a “mean nurse” (that she never wanted to be) to force me to take them when I didn’t want to. It really traumatized her and damaged our friendship. We’re just now coming back from it and we now actually have house rules. One of them is that I take my medications, on time and I ask if I need help.

But a second house rule is that I take my anti-depressant. I started seeing a therapist because I was sleeping through medications that I need to keep me alive. I was sleeping until lunch even on the days that WERE a bit okay, when I should have taken advantage of feeling a wee bit better. I’d had counseling and CBT, but the fact is that my life is never going to go back to the way that it was so I’m going to need an anti-depressant to help me deal with that forever. And that’s okay. It sounds like maybe your husband is the same, as he’s still acting depressed? But depression is NOT an excuse; for treating people badly, or for not seeking help. Yes, it can make things more difficult, but you cannot just say you have depression and then give up on life. (That said, I know help doesn’t work for everyone especially those with major depression, and sometimes the depression is overwhelming and knocks people into bed all day even when they’re trying, and that’s okay. The main rules are just: don’t be an arsehole, apologize if you are, and try.)

If your husband doesn’t want to take an antidepressant, I’ve often seen tricyclic antidepressants that work for nerve pain and depression are prescribed, because then it’s not “just” to treat the depression but something to help with a “physical” symptom (though I’ve seen depression cause very real physical symptoms) and some people are less resistant about looking at it that way.

But right now, you’re frustrated he’s not trying harder. Now is the time to talk about how to fix this, because otherwise, it will soon be less frustration and straight resentment. Use “I” statements. I know it’s so hard not to focus on a lot of “you” things that are true - “You stay in bed until noon,” “you refuse to sort out anything,” “you won’t go to the gym even though I sorted that for you.” But try to instead go with - “I love you,” “I’m still young and I want a life with you,” “I believe in you and I know you can do this,” “I will go to the ___ with you until you’re established” (GP for antidepressant? Gym to start a routine after work? I don’t know).

So yes, he does need to try harder. No, it’s not acceptable that he’s given up. But he may just need one more push?

BUT as someone who is disabled and married, I mentioned my house rules. I live by those rules. If I didn’t, I wouldn’t expect everything to just be copacetic. If you lay everything out, and put your feelings and your thoughts and your life together on the line, and he still doesn’t change at all, then disabled or not, it’s just like any other marriage. You have the right to try counseling, and if that doesn’t work, you have the right to leave. Of course you love your husband, just like my husband loves me, and it sounds like you’re doing everything you can, but you can’t light yourself on fire to keep someone else warm.

Good luck, OP. Please PM if you need to.

Claudethecat · 02/01/2022 22:58

Excellent post @5YearsLeft.

Unsure33 · 02/01/2022 22:59

So you say he is stronger now and has had some recovery so what can he do or not do?

Ponoka7 · 02/01/2022 23:08

I had similar issues, my nerve damage in my hands hasn't gone and I won't drive again. I was lucky to have counseling. Part of that was working on acceptance and later me being to focus on what I could do. It's easy to keep on thinking that you are Ill. It's difficult to keep reminding yourself that you are better. I found that planning my day helped. My goals were flexible because I still had fatigue, but if I had been conscious to move more and not sit for too long and ticked a couple of things off, even if they included a online food shop, I felt a sense of achievement. I can still remember how elated I felt when I first hoovered and mopped my kitchen floor. A honest conversation needs to be had with him.

Hankunamatata · 02/01/2022 23:10

Can you get an occupational health assessment for him? Get a PT that comes to the house so he cant avoid it.

Wreath21 · 02/01/2022 23:14

It's always worth remembering that bad things also happen to awful people, and that illness or suffering is not a free pass to be a total PITA.
You do not owe him the sacrifice of your entire life to be his uncomplaining unpaid nurse when he isn't interested in helping himself. Was he a nice person and good spouse before he got ill?

TBH whatever the circumstances, you are not a monster for feeling that you have had enough. It might be worth at least looking into what would be available to him if you decided to leave (you are in no way legally obliged to be his carer, it's not a matter of: if you won't do it then he will be left to die).

Hankunamatata · 02/01/2022 23:19

Cousin has become disabled and to take pressure off the household has 'carers' (not really to care for him, more companions but come to the house to make sure he is up and accompany him 3x a week to make sure he gets up and leaves the house). So one day the go swimming, 2nd day they do food shopping for the household, 3rd day they go a a group activity where cousin has made some friends. They are paid for out of his direct payments

Hankunamatata · 02/01/2022 23:20

Should add cousin carer also get him to put load of washing on and do some basic household chores as part of his occupational therapy

WorstXmasEver · 02/01/2022 23:43

Bin him off.

Joola · 02/01/2022 23:58

Blimey, this is my first post ever on MN and I’m overwhelmed by all of your comments.
I really do love my husband and I
don’t want to leave him…I want to try and have a good life together, do some travelling(when we can) I want him to be stronger and fitter. I suppose I want my husband back but that’s not possible!! Maybe I do need some counselling!!
@5YearsLeft & @Ponoka7 my husband is already on an antidepressant as well as a lot of other tablets. Like you @5YearsLeft I have to remind him to take them!!! They keep him alive, why would you not remember? He will do things occasionally @Ponoka7, try to sweep floor, he’s not got very good balance so finds it difficult.
You’re right, I do need to change how I talk to him. I just get so tired as just me dealing with everything and then I get annoyed. I know he hates that he’s lost the ability to do anything. I just wish he would consider me more. Maybe order a takeaway as a surprise, arrange to go out with friends(we have lovely friends)
This year we probably need to organise some outside help, a carer who could take him out instead of sitting watching tv all day and waiting for me to come home.
He does seem to think he is still unwell, and although he has some medical issues he is not unwell.
Thanks for all your comments. I feel better that you don’t think I’m being unreasonable and will approach the problem a little more confidently

OP posts:
MotherChristmas2021 · 03/01/2022 00:19

You both sound depressed tbh. You could do with some outside support to help you have a more productive life together. Flowers

Gettingthereslowly2020 · 03/01/2022 00:36

Your life sounds relentless, you sound like Cinderella. Time to make some changes.

Yes, get some kind of care package in place for him and start going out yourself. You deserve a life full of fun and laughter.

Definitely have some counselling. You've been through a lot. It's good to talk and you need to look after yourself. You can't pour from an empty cup.

Right now, you're not a wife, you're a carer. You need to move back to being husband and wife. I think getting carers in and stepping back from the carer role will help you to either get back on track or make a decision about how to move forward.

HappyDays40 · 03/01/2022 02:20

He would have to want to engage with rehab, that would need to come from an emotional and physical perspective.

HeadPain · 03/01/2022 02:28

Does he have the district nurses coming in and are occupational therapist or physiotherapist involved for rehabilitation due to all that time of immobility and walking/balance issues? They can come to the house.

Aquamarine1029 · 03/01/2022 02:31

@Scottishflower65

Yes he needs to step up. Stop doing things for him. Tell him he has to do household tasks such as cooking evening meal. Expect more and you will get more.
Totally agree. You need to speak up and tell him exactly how you feel. He's just taking advantage of you now.
Marvellousmadness · 03/01/2022 02:51

Counselling time op!
And after that, its time to reasses if you should stay with him ....

It doesn't sound like much of a life... you are his carer. You dont have a married life together

NumberTheory · 03/01/2022 04:32

Joola I have no experience of this, so you may want to take this suggestion with a pinch of salt, but it occurs to me that your roles have changed dramatically from husband and wife to patient and carer. I wonder if you could challenge him to be more of a husband again. Point out that you love him, you've stuck with him because of that and it hasn't changed, but you haven't seen how he loves you in a while (that's kind of what I'm hearing in your posts). Ask him if he ever thinks about how to make you smile, or feel great about yourself anymore. Point out that your relationship is currently very one sided, and you're not really talking about the work (which by the sounds of it will never be equal again) but about the amount of care and consideration you have for each other. Ask him if he thinks it's what you deserve and why he doesn't try to make your life as good as he can the way you have for him.

I was thinking that perhaps taking his focus away from himself might make it easier for him to start doing more than he has been.

Maggie178 · 03/01/2022 06:37

It sounds like you've done a wonderful job looking after your husband. You've both been through so much. Being his carer must emotionally and physically draining for you. Definitely seek support. You could try a carers support group. It also sounds like your husband has become totally dependant on you, learned helplessness. He needs to try to do some things independently. Not only for you but for himself - it will boost his self esteem. Things you think he can do stop doing. You also need time together as a couple - suggest a date night. You are his wife first.
My hat goes off to you for looking after him all these years I was struggling after one year