I know I am an unreasonable cow

[ReindeerBollocks]

I've not name changed for this (may be a brave or stupid mistake I don't know at this point), so please be kind.

DP has end stage renal failure. He currently has dialysis three times a week late in the evenings and he works full time Monday to Friday 9-5. I think he is amazing for doing this. He has had periods of being very unwell due to RF, and has spent several periods of time in ICU.

We discussed the possibility of him being a SAHD but he was off for about three months due to illness and didn't think he could keep up with our two DC's (one of whom has a serious medical condition). He decided to go back to work as it is easier and I have always admired his determination to continue working.

Anyway, I do everything at home and with the children (and all of the medical stuff with DS ) and we are both happy with this arrangement. DP generally spends most of Saturday in bed recovering from illness and exhaustion from his week.

He has had RF for a fair few years now and he has gotten worse. He is generally unwell most of the time
he is at home. And I'm sick of it. I don't blame him for being ill - I'm not evil FGS. But he doesn't take care of himself properly when he is working and he is always frustrated by how little he sees the children and that he doesn't have any energy for them when he is around.

Because of how frequently he visits hospital he is always picking up D&V bugs too, many of these are passed onto the children, and he is constantly complaining of a variety of different symptoms i.e. Fidgety leg syndrome, sickness, headaches, general crappiness (he on occasion has heart problems and breathing difficulties too).

And well quite honestly I'm sick of it. I spend all weekend nursing him back to health for work on Monday, and I do everything I can to help him during the week. I love him dearly but seeing him neglect himself for his career, whilst killing himself in the process, is grating on me. I know he can't and more importantly won't give up his career, but at the same time, we as his family just get an exhausted, overworked, unwell DP (and dad). And I know I am being a horrid bitch but I'm losing sympathy for him (and I resent the fact that we never get any 'good' DP time).

How can I stop myself feeling this way towards DP, whom I care so much for? And how much of a completely unreasonable bitch am I being?

[CarGirl]

It sounds like there needs to be a shift, could he go down to a 4 day week or job share? It sounds as though he's got the point where working full time is too much for him and the consequences on the whole family are massive.

[Jacksmama]

You are not being an unreasonable cow. It sounds to me like you are exhausted. And it doesn't help when the person you love isn't doing anything to help himself (which it also sounds like).

It's normal to feel exhausted and exasperated and like you have no more to give.

Will be back later - am in work - but just wanted to tell you to give yourself a break and not judge your own feelings so harshly. If your best friend said this to you about her DH, what would you tell her?
:)

[curlymama]

You are not being a cow at all! I think you need to talk to him about how you are feeling, your needs are important too. He needs to start thinking about doing less at work and reducing his hours.

[RuthChan]

You are not being unreasonable.
You need to stop giving yourself a hard time.
I have no personal experience of RF, but it must be increadibly hard and must put an immense strain on the entire family.

It is true that your DP is the one who is ill, not you, but that doesn't make it easy for you.
It sounds like you have taken on a huge amount to help him through. It is natural that your sympathy should wane at times and that the ugly head of resentment should rear up on occasion. That makes you human, not a bitch.

It is also a sign that you need more help.
The two of you as a couple are dealing with both the illness and your children. That's a lot to cope with.
Is there anyone who can help, maybe family or friends, or even outside help? Anyone who can look after the children for a few hours a week to give the two of you a chance for some quality time together?
If you were able to spend time together you would rekindle your love, which would make caring for him and all the other things you do easier to cope with.

Please don't feel guilty. I helped to care for my sick mother while I was a teenager. It was very draining. It was a different situation from yours and I had less responsibility, but I hate the idea that you think so badly of yourself.
Please try to get the help that you seem to need.

[wayoftheworld]

He is propably thinking of you all by working this hard- that is what usually motivates man -to provide. But it doea sound like you are tired and it is good to let some steem out here, but you must sit down together and talk about this with each other. If he is over working to provide for you guys and you can get by with less it might be worth for him to know so that he wont feel guilty...anyway it is worth talking about it.

And have a break....ask your friends to take you out for a movie and a drink once in a while!!

[PhishFoodAddiction]

YANBU at all. Sounds like a horrible and difficult situation, and I'm sorry your DP is so poorly.

Would it be practical/ would he consider going part time at work?

I think you need to make it clear how you're feeling in all this, and have a serious discussion about what to do next.

[ReindeerBollocks]

I am trying to help him, and I'm giving him a kidney in a couple of months, but he needs to be in perfect condition (well as good as he gets) for this to go ahead.

I'm not bothered by doing all the other stuff, I want to do it, I adore the children (most of the time ) but I am tired of DP always having one illness or another, and being of no use at the weekend. I don't want him to help, I just want him around, cracking jokes, and able to do stuff.

I have tried talking to him before, but he gets really defensive and thinks I'm attacking him for being ill and his response is always 'you've always known I have RF'. I just want him to take better care of himself.

He won't give up work, in fact he has just done an extra qualification which is a real positive point for his career, but means he will be more busy. He can't drop hours either (his new employers don't even know he's got RF).

[wayoftheworld]

He sound like a proud man! hard to deal with this one...I think you are amaizing to give a kidney- will it work??

[PhishFoodAddiction]

It's hard to see someone you love running themselves into the ground.

Will he make a good recovery after the transplant? I think you're amazing donating a kidney.

Maybe frame the discussion around you wanting him to be as well as possible before the op?

[ll31]

agree with phishfood addiction.. he clearly needs to be in as good health as possible for transplant so maybe its time to look at trying to get him to consider how he's going to achieve that which from what you say must include him cutting down hours - good luck

[Maisiethemorningsidecat]

It sounds as if work is perhaps giving him the normality and control that he doesn't have in other areas of his life atm. I also wonder if you are (understandably) resentful of the whole thing, but focussing on his attitude to work? Of course, I'm probably completely wrong and speaking utter shite!

Is there any respite care available? Is there anyone else who could help look after your DCs for a while at the weekend? Perhaps he just won't be able to crack jokes and do stuff for a while yet, so maybe say "OK, not now, but soon"?

Sorry - I'm not sure if this helps at all . It must be bloody hard going. Good luck for the ops.

[FattyArbuckel]

Could he take a career break for 6 months, get in really good shape for the transplant then have some recovery space? Meantime you and he get your relationship on track and the kids see their daddy. Surely his health is the number one priority?

I don't know if this would be affordable for you?

[theevildead2]

YANBU and you are certainly not a cow, I hope as a family you can sort out something to help you both! good luck

[animula]

No advice at all, but I just wanted to offer sympathy, and a virtual ear. I can hear your frustration, and can feel it - I can't think of a solution, either.

Thing is, he is going to have to pull back a bit as the operation draws near, surely?

I sense a little denial on his part. Understandable. But means you are left with the worrying (as well as lots of practical things that are consequent on that denial).

I just want to send you all the best wishes, and hope it turns out OK for both of you.

And good luck to you, too, for your op. That's a big thing you're doing.

[MsKLo]

Oh reindeer... I don't have any advice as such as I dont know what would help but I jyst wanted to say I am so sorry - you are going through so so much and of course you are not being horrible

Please don't think that

I hope you find some good advice here from people who have the knowledge to help but just wanted to offer hugs and sympathy

[WhereYouLeftIt]

If you're giving him a kidney, surely his employers are going to HAVE to know about his RF? That's going to involve some serious time off surely.

[ReindeerBollocks]

WYLI - I know he should, we're in disagreement about his empolyers knowing (he doesn't think they should know about the RF or kidney transplant and wants to cover it with extended holidays ).

DP is potentially going to undertake a massive case at work too - starting around the time of transplant. I'm beginning to feel he's far too in denial about it all, and I agree I'm resenting dropping everything at the drop of a hat when he is ill, only for him to occupy all his 'well' time with work.

Although he was really ill last night, and I thought he'd have to go in again, and honestly, it still really scares me when this happens. I love him dearly and don't want anything bad to happen (like his previous heart attacks). I just wish he could be more realistic about what is going to happen over the next few months.

[HaveAHappyNewJung]

YANBU - if you were horrible you wouldn't be feeling so guilty about it all. It's hard work having an unwell partner.

It certainly sounds as though he's in denial and doesn't want to give up work but he'll just have to put his health above money.

[FattyArbuckel]

I think you get to call some of the shots here. It's not all about your dh.

You are looking after him/the house/ the kids and giving a kidney for him. That gives you some say over how he deals with work and you need to have an open discussion.

I think his fears are valid about being seen differently at work if he has RF, and he has the right to privacy about it. But, he is not just an individual, he is a part of a family unit, and as such he has to take account of your views and the effects on your life and the childrens' lives. That involves listening to you properly at the very least. Your dh doesn't get to call all of the shots because life has dealt him some duff cards.

Obviously it is an extremely difficult situation for all concerned, which only makes it more important that you can agree a way forward together.

[ThisIsANiceCage]

Oh god, I feel for you both so much.

Agree with Maisie that he's seeking normality at work. Does he also have a profession where it's usual to do silly hours and push oneself really hard, and he feels he's "letting down the team" or being out-competed if he "wimps out"?

It's really, really hard to step away from that mentality when you've spent years cutting yourself zero slack and and your whole professional identity and achievements are based on flogging yourself stupid.

But he shouldn't be thinking of career breaks and annual leave to cover sickness issues: this is what Statutory Sick Pay and the Disability Discrimination Act are for (it can cover illnesses with long-term impacts). What's more, he will gain various statutory protections once he's informed his employer he's ill which he currently doesn't have (what would happen if he made mistakes because of fatigue due to illness at the moment?)

I know that these theoretical protections may be so much bog roll in real life situations, but it actually sounds like his illness is comparatively "employer friendly". Bizarre notion, I know, but the transplant is a scheduled thing, with an expected recovery period followed by (one hopes) a return to good function - for both of you. Very like maternity leave. Employers hate open-ended, unpredictable illnesses: they cope much better with predictability.

Would it help for him/you to talk to an employment lawyer, or just someone who has been through a similar period of illness-recovery and got on with their career afterwards, to get some perspective that this is a phase of his life which will have to be played differently? So he can grasp that changing tactic for now doesn't constitute the end of all he holds dear - but the best way to preserve it?

Please feel free to tell your DH from me that I clung to work in the short term and may now never work again: my big goal is that in a few years I'll be to ditch the wheelchair. Work seemed the right thing to do at the time; 8 years on it's hard to remember why a few months here or there was so important.

When one's already unwell and barely keeping up with the daily race is the most difficult possible time to shoulder additional burdens, like change and contemplating the meaning of life. It's also the time it's most important to do so, so one can make the changes needed to survive.

And big apologies if I've just been repeating what to you is the bleedin' obvious...

[ThisIsANiceCage]

Btw, that post was all about your DH: I think you're a hero! Carers need to be cared for too!

[pointythings]

I think that since you are giving him a kidney, he needs to do everything he possibly can to be as well as possible to receive it. If that means cutting back on work (and so telling his employers), so be it - what he is doing is not maximising his potential for recovery and the bottom line is that this has to be his goal - to be well enough for the transplant, for it to work, for him to get his life back. He has to see it as an investment.

TBH I think he's not so much in denial as grieving over what he feels he has lost. It's not unusual, but right now it is unhelpful. I don't know how you can support him, but I think he could do with some counselling to make the cost/benefit analysis very clear to him.

[tomhardyismydh]

you need to have a carers assesment (not sure if you can due to him working ft) or talk to your local carers centre about possible support availible to you and dp.

encourage dp to drop some hours at work.

YANBU and you are not a cow, just shouting out for some support, you are entitled to do just that.

[elmofan]

I really feel for both of you tbh

I have kidney disease and its a terrible condition to live with . I agree with others that maybe the reason why your dh works so hard is he is trying to ignore his illness . You need to sit down with him & explain your worries to him . I really wish you both the very best of luck with the operation .