DH working from home ALL the time; feeling absolutely drained by him

[Gotitthanks]

That sounds horrible but hear me out. DH is disabled. It’s fairly recent and we’re all still adjusting I dare say.

Work has adjusted to him working from home permanently. Because of his disability he has to sit in a specially adapted chair. There’s no room for it in any of the bedrooms upstairs so he’s in the lounge.

Since he’s sleeping badly at night he is working when he can. He was working until 8 o clock last night. We have young children and I am sick to death of having a husband who is there in all but name.

I know there’s no easy answers. I’m just sharing because it’s so difficult to talk about in RL without sounding an arse but truth is I’m sick of the sight of him!

So your poor DH is not only disabled but rather than giving up and feeling sorry for himself, he’s carried on working with reasonable adjustments so he can continue to support you to stay at home with young children.

And you’re moaning because you don’t want him around underfoot? Why don’t you go out to work then you don’t have to see him.

I’m so sorry for your rubbish situation @Gotitthanks.

Nowhere near as awful as the place you’re currently in, but I remember my ex-DH deciding he wanted to do a three year qualification which was in no way related to his job, it was just something he was interested in.

But we both worked full time, DS was going through a really rough time at school and healthwise so the timing was shit.

Ex-DH commandeered the kitchen table as his place to work and pretty much checked out of family life for the entire period. Even basic things like making food was a nightmare as the kitchen was pretty much out of bounds most weekends and evenings while he ‘studied’.

I was holding down a full time job, doing all the grunt work at home as well as supporting DS with school issues and taking him to numerous appointments. It nearly broke me and ex-DH’s total lack of consideration for both of us was a huge reason for me leaving him a few years later.

Sending you 💐 and I really hope things start to improve for you soon.

You do need to explore all the support there may well be depending on his condition. And seek advice too about what help there is in terms of adjusting your home. Occupational help from work, and indeed the NHS seems appropriate. Ask for an Occupational assessment from the NHS. They will advise on adjustments, equipment and provide them too often.
They too will note the impact on all the family and may direct to services that can offer practical help and advice.

Your husband needs you. And hard as it is he will know you resent his change in circumstances. But work together, and don’t stop talking to each other.

I had a mother who resented my father being home as his hours changed. Once a fortnight. She resented him being in what she thought was her space. He wasn’t supposed to be there. She failed to remember that his work had paid for it all. Her space. And that actually it was his space too.

Working out of a home is difficult. But an Occupational assessment may well help with suggestions on how to make it work. Please organise one today.

And good luck. Once things are more organised to suit you will feel better too.

As short term it is clearly going to be pretty impossible to change some of the factors in this situation, can you identify things that COULD change to help you cope, however small. Do you have family or friends who could take the kids even for a couple of hours to give you a break or be in the house so that DH isn't alone whilst you take some time for yourself. Can you afford a cleaner, can you identify tasks that you can stop doing? In other words what small changes could you make that would free up even an hour to give you some head space.
I know this sounds like the bleeding obvious and I'm really not trying to patronise you but I can feel the pain, frustration and anger through your posts and the feeling you will either explode or collapse if something doesn't change soon. You are drowning in your circumstances.
Someone mentioned SCOPE above and I have no doubt there are other organisations that can support families in your situation. Please reach out for whatever help there is.

So what do you actually want to happen here, and what do you think is the best way to make that happen ? Because I’m seeing lots of things that are clearly problematic, but in order to change that you need to have a plan of action. What you seem to be saying is that he won’t engage with anything like that. How much time has he had to adjust ?

And other than telling us that it’s a recent change, there’s no detail about the actual nature of the change - was it sudden onset of disability, accident - what ? Is it likely to improve, or if due to a health condition is it degenerative ?

These are all things that not only affect the outcomes that you want/need, but they will also have an effect on how your DH handles the change, and the timescales for that. For example, a disability due to an accident, the effects of which will improve with time, is a very different beast to being faced with the diagnosis of a degenerative disease which will inevitably make your life more and more difficult, and force you to watch yourself lose the function you once took for granted. That’s huge, and the onset of major disability changes your outlook on life and can make you look inwards to the point of depression.

It sounds like this is what’s happening to your DH, and work is the distraction. Suddenly it’s the most important thing in his life for many reasons - self esteem, still feeling as though he’s contributing and useful being major factors. It takes time to adjust, and he may not be ready to admit that this is now his life, and to commit to the changes necessary to cope with it - or to be able to see things from the point of view of those around him, who are also going through these changes but from a different perspective.

If it’s not too outing, a bit more context may get you some better advice.

@Gotitthanks Apologies as I've not read the whole thread - only your posts. This sounds like an awful situation and I really feel for you. I think when you have young children it can frequently feel as if you are constantly juggling plates and waiting for the whole thing to collapse even in "normal" circumstances.

I'm assuming this situation is fairly recent and you are all still adjusting. I agree it is completely shit for you and you are entitled to feel like that. Is there anyone you can talk to in real life - a friend/family member or even a work colleague ? I've line managed people who've been going through really difficult personal things and have always been happy to be a listening ear.

I know counselling is expensive but I think you might find it useful - even as a safe space to vent. Do you have access to any counselling via your work ?

I really just wanted to offer sympathy and I suspect what you want is not practical solutions but for other people to appreciate that this has been awful for you and to recognise your struggle here.

Awful response. If you can’t be supportive why post ? OP has already explained why she’s temporarily stepped back from working and t’s not hard to see why. This is a difficult situation for everyone, harsh words don’t help.

And that must be one of the most unhelpful and least sympathetic posts I've ever read !

@Gotitthanks im the disabled person in the marriage.

Tbh, I much preferred dh letting me do things my own way. And yes, from the outside, it looks like I’ve retreated in myself etc… In reality, I’ve been in survival mode trying to still function as if I wasn’t ill. Feeling like a burden. Etc….
Switching to a place where I’ve accepted my own limitations has been hard.
What would have helped is dh telling me it was ok for me to stop work or go part time. To encourage me to change the way WE are doing things to something that works for me and him. He also kept his own hobbies/life which I think helped too because I didn’t feel responsible for that too AND it gave dh time being himself too.

I also think it’s very had to know how much a person can do. I’m extremely limited energy wise as to how much I can do. But from the outside, it’s not that visible and I’m pretty good at masking.
Thats another reason why giving me the lead is essential. Theres been so many times when I’d love to interact, do something with dh at the weekend. But doing so means pushing myself and then being much worse the day after. What looks like ‘doing nothing’ can be self preservation rather than ‘just’ a head in the sand approach.

im sorry. I appreciate the situation is really had for you too. 💐💐
Youve somehow lost your partner or at least the partner you had with the routines and the balance you had. It’s bound to be very hard to deal with. And you’re left the only person dealing with the dcs too (my dcs were much much older when I arrive at that stage).
Dont forget to put your oxygen mask on too. You can’t be everything for everyone for ever.

I’m also interested to know what these things are that he won’t use anymore now he’s disabled.

Thanks @SummerDive .

@THisbackwithavengeance I’m not ‘staying at home with my young children.’ I’ve been signed off for one month because DH has a lot of hospital appointments, can’t drive, in all honesty probably shouldn’t be alone for long periods although will have to be come September (longish anyway) and does need support. Also because this has happened suddenly it meant we didn’t have childcare for a couple of days a week. So it’s just to sort things like that out. I am on full pay BTW.

I think the big problem at the moment is uncertainty. I’m hoping things may improve but since we’re not 100% sure what we’re dealing with it’s hard to say. The main issue is with the summer holidays on the horizon, the atmosphere in the house is strained at best, it’s hard for the children to play with DH just kind of THERE. So I feel pressured to be out with them which is both exhausting and expensive!

If you’d actually read the OP’s posts properly, you’d know that she does work but has stepped back temporarily because her DH can’t be left with the children. She is experiencing a huge adjustment too!
So no, he’s not working to solely support the OP while she sits at home doing nothing, she is having to do everything in the home right now, including having to parent alone.

@Gotitthanksdo you have a support network around you at all? Family or friends? You need to be able to vent irl. I know it’s costly but do you think counselling could help you to process it all?

Many children do have to learn to manage a parent who is in the house who is working, but also for many sleeping.
People who work on shifts can be sleeping when children are awake.

Please get an Occupational Therapy assessment. Ask for one from your NHS.

Possibly but it’s when to do it! I do have a bit of free time for one more week (!) but then it’s the holidays and then I’m back at work or with a small child with me! We don’t know about treatment yet. It may be that I’m not back at work for long, we’ll have to see.

@Monty36 they are really young. One isn’t even quite three yet. And DH is THERE, in the lounge! So hard to avoid!

Prior to being unwell, he could be selfish and lazy and impossible to talk to. So that's not a good starting point. And now things are 100 times worse, you do everything and cannot talk to him about how to improve things for the family. This sounds dreadful for you.

Your husband might be the main character in this and that will likely remain the case until he adjusts/improves/accepts his condition. He's not in a place right now where he can think outside his own misfortune but he will have medical support and can access mental support when ready.

You, on the other hand, and the children to some extent, are also caught up in a situation not of your own making. Yes, you need to support him and support the children with the new normal but whilst you might not be able to lean on your husband at the moment, you are absolutely allowed to do what you need to do to get through. If that means feeling resentful, that's fine, if that means feeling guilty, that's fine. You are allowed to be angry, to be bitter, to think what about me, what about our family. You are allowed to want something better, you are allowed to be angry at him even if that's not something you feel you can say out loud.

No, you can't burden him with that but you can unburden on here or stand on a mountain top and scream into the wind or whatever means of temporary escape you have available. There will be solutions but that's not what this moment is about, This moment is about you needing to open your safety valve and let off steam. You're not a bad wife or mother. You're just a woman in need of a moment for yourself. You matter too.

@Gotitthanks this is so hard.

I had a kind of similar situation with my ex DH. Over the course of a few years he became very stressed and mentally unwell. He'd always had depression but it got a lot worse. It got to the point where he couldn't work any more. He was at home ALL the time, writing a book on his laptop. He was totally detached and disengaged from the rest of us, but just THERE all the time.

It was stressful in a way I couldn't explain. I felt on edge all the time. I totally relate to your feeling of being a ghost. My self esteem was completely eroded. He was struggling so much and in his own world to such a degree that I don't think he had any capacity to see outside himself and his struggles. Meanwhile I was still working, having to look after the kids and the house, organise family activities etc while he just disengaged.

I remember talking about it to my mother in law and she just said something like "you need to just spend more time out of the house". I know she meant well, but I love being in my own house, I don't want to be out all the time!

In the end he and I ended up splitting up (due to many reasons). But I just wanted to say I remember how hard that situation was, and I really empathise with you. I hope things will get better 🙏

Yes I know. He doesn’t sleep there too I think he goes upstairs to do that.
And many children have grown up with parents who did and do shift work. Even when you are small. For many families it is part of life.
But if she gets an Occupational Therapy assessment they can work out /how/if a workplace elsewhere might be doable. But she does have to ask.

@Pinkseaglass i am so grateful for your response, when people ‘get it’ it is really helpful. Thank you

@Monty36 i know you’re trying to help but it really isn’t the same as shift work. Although I do actually think having someone working nights when someone else has young children around in the day is probably not very practical in the long term. I know people do it but it doesn’t mean it’s very nice for anybody.

That was one point made over a concern expressed about the summer holidays.
And to be honest, if it is something you grow up with you become used to it. And no, don’t resent it or anything. It is just how your family has to work.

OP you have to want things to get better, to improve. And seeking outside support could do that. Occupational therapy assessment the first port of call.

Can he use the 'access to work' scheme to get free travel (taxis) to work or a local work space 2 or 3 days a week?

That sounds hard to deal with. It’s probably a bit of grief for the life you expected to live as well as just annoyance. I can understand, when my husband got sick about 5 months in I was suddenly so angry with everything because it felt like everything was on my and my life had been stolen from me.

You need to find something that works for you. Even if it’s converting the old office into a new living space where you can chill away from him.

It’s OK to feel how you are feeling and to grieve the life you wanted.

It is easy to say this when you haven’t experienced being the partner of someone suddenly disabled. Just because it is worse for the disabled person doesn’t mean the partner isn’t human and allowed to think and feel things that may seem unsavoury at first. They are common and natural so long as she treats him with compassion her personal feelings are not to be ashamed of.