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!

He can’t or doesn’t want to.

Do you think he is using denial as a coping mechanism regarding the severity of his disability?

Until you have been in relentless pain for weeks and months combined with the fear that you will never get better, you have no idea what it is like

I’m sorry that you have had issues too, but you also ‘have no idea what it is like’ to be the partner of a disabled person. So perhaps you should think about that before posting.

Can you change the garden office into a garden lounge?

I wonder why you're not getting 'good enough' responses to your posts? 🤔

You haven't said how recent the disability diagnosis is or if it's permanent.

I was in a wheelchair for 18 months (and my 5-year old permanently paralysed) after a car accident.

My DH got therapy from a trauma therapist that explained to him what we were going through, and how to handle it. And how to cope with the new normal. It was also a good place for him to vent and for someone to fully understand what he was going through while I was grieving what was happening to me and my child.

Please consider therapy just for yourself so that you have an outlet. I'm sorry this is happening.

Your DH sounds like he was difficult even before this, so this will make it so much harder. I'm sorry

Sending a hand hold @Gotitthanks

Really sorry about what has happened to your DH - and it has rocked your world off its axis too.

As you say , this is all so hard to talk about in RL Scope have forums (under Online Community) for families and carers of disabled people, where you might possibly find people who are 'the right audience' for what you are going through?

Families and carers - Scope | Online Community

Is your DH getting any help from Adult Social Care? OT Needs assessment for your home? They ought also to be checking on you and what support you need. My sister was offered counselling.

Anyway - so tough that you re going through this. It's OK to be upset by the things you could never have anticipated.

Two practical solutions, ideally to combine:

• I know this is drastic but given you have had a life changing twist, is there any scope for moving house? Open plan does not work for you anymore. Stairs will probably no longer work for you anymore either.
• You need to sit down with him and say for the benefit of the family, you need to set hours, outside of the hours his employer sets. Those of us who are selfemployed have to do this for ourselves all the time, as we have no employer doing it for us. At 6pm, the laptop goes off and its time to leave work behind you. This is where moving house would be ideal: if there is a separate room used as an office, he can physically leave that room, shut the door and go next door to switch back into family mode.

Like many other PP on your thread, I am so very sorry that this tragedy has happened to your family. And I completely get how stressed and overwhelmed you are by it all. As it doesn't seem like your DH was a very understanding person before becoming so disabled and in pain, it's definitely going to be a big ask for you to just nicely ask him to take the rest of the family into account. I think you perhaps need to look to someone outside your family to do this on your behalf. There's been lots of suggestions as to where that sort of help might come from, and I do hope one of them proves useful in being able to help you set the boundaries of how you as a family are going to cope in the foreseeable future with your husband's new reality. What he's currently doing is obviously not going to be sustainable for any of you. I also understand how you're feeling unable (due to both other demands on your time and the unwillingness of your DH to engage) to speak to him about this. Is it at all possible that you can write down your concerns in an email to him? Perhaps one in which you pre-empt what you think might be his rationalisations as to why what he's currently doing is "fine". He will then either ignore that email or perhaps respond angrily (or perhaps not so angrily). But at least this gives you something tangible to share with an outside party to help them see the problem and hopefully find a way to convince your DH to change his behaviour. I wish you all the best and lots of strength going forward.

Wow. Just wow. A recent life changing disability and this is the best you can come up with ? Kick him out and separate ?

Even prior to this if you ever tried to discuss a general issue with DH it was impossible

Gently, if this is the case then your relationship is going to need a big overhaul in order for you to both retain some kind of quality of life, and get through this and stay together.

If this is what he wants, then he is going to have to become able to have these kinds of conversations, because this is fundamental in any relationship, let alone one with extra pressure from an external source.

He doesn't have the luxury of keeping his head in the sand, and neither do you. You're not actually doing the family any favours by not broaching the subject. You're becoming more and more fried and resentful by the day, and will burn out. Your DC will have to pick up the slack that creates, emotionally if not physically. They need at least one functioning healthy parent, and this might sound brutal but that's on you right now. Not wanting to upset him isn't sustainable. This is an upsetting situation for all of you and you're equally responsible for parenting your children and working out how best to do that now.

You need some support. It's either shit and he's able to accept that things like, him working in the lounge room all hours, is causing uneccessary extra strain and make a compromise, or it's shit and his wife goes under because he's unable to hear her. It's shit either way, one's worse than the other.

The problem is that posters are trying to solve an unsolvable problem @BuckChuckets . It isn’t about responses ‘not being good enough.’ It is simply that despite the fact I keep trying to explain a garden office is not the solution (let’s just imagine for instance that several thousand pounds is granted to us and we can instantly build this adapted garden office with a toilet and adapted chair and bed, etc) is that actually going to solve the real problem here, which is that he’s retreated right into himself? It won’t, and actually would massively exacerbate the problem.

I am risking lots of anger here from people in the same unfortunate boat as DH but the fact is my life has become extremely difficult. I can’t leave either child with him. He falls asleep, he can’t help them, he ignores them. So I’m doing everything and have been for months. I always did most things anyway. It’s a bit easier now I’m not working on top but that’s a temporary respite.

DHs situation is horrible and unfair. I’m sure if he posted he’d get lots of support. Meanwhile … well, I don’t, do I? I get told over and over to build a garden office until I’m sick of seeing the words garden and office! I get told I lack compassion, that I need to Talk To Him. What no one’s prepared to do it seems is just acknowledge the enormous toll on me and the children. It has been and is really hard and the situation could potentially drag on for years.

@TurtleCavalryIsSeriousShit i am so sorry for you and your family. What an awful thing to go through

What no one’s prepared to do it seems is just acknowledge the enormous toll on me and the children. It has been and is really hard and the situation could potentially drag on for years.

I acknowledge it. I think that this is the only thing that matters here, how you're going to get through this and keep the relationship intact if that is a desirable outcome, and a safe and healthy place to raise children, with a husband who was never able to have a conversation with you prior to this.

What do you need? That is valid and you matter. What is best for the kids is paramount, but you can't provide them with best if you're sinking.

I did have compassion for you, I didn't say you were uncaring, I didn't suggest a garden office. I was, in fact, totally on your side. I simply asked if you'd spoken to him and got a shitty response from you. But it's cool, I can happily crack on with my day, hope you enjoy yours.

So he’s never wanted to deal with things?
you do have issues in your marriage. They’ve just become worse since his health situation changed.
People have suggested therapy and you’ve said no, but if he won’t engage properly with you in discussions about your situation, I’m not sure what else there is.

This is very difficult indeed and a massive adjustment for the whole family.
I am certain you’d be eligible for certain payments and/ or grants to make adjustments to your home to accommodate his work space ?

@60degreecycle I am hoping that as we know more we can plan more. It’s hard at the moment as there’s a lot we just don’t know and the summer holidays approaching are filling me with trepidation

@BuckChuckets i am genuinely sorry if my response upset you. I will be honest and admit that your original response - the one I made my terse reply to - wound me up the wrong way. It said And what has he said when you've had this conversation with him?

Those sort of replies on MN are - well, they are really passive aggressive for one thing and phrased in a way that make it obvious ‘this is what you should have done, and if you haven’t done it then what do you expect?’ Maybe that wasn’t your intention, in which case we misunderstood one another

As I have said, it is largely pointless broaching things like this with DH. If anyone is waiting for me to claim DH was a perfect man before this happened I can’t. There’s always been a tendency towards being a bit lazy and selfish; nothing terrible but he’s definitely let me shoulder the burden of very small children. I did actually seriously consider ending the relationship a couple of years ago when our children were 3/4 and 1. At the time I remember feeling like I had been thrown out of a boat into freezing cold rough seas and all my energy was going on just keeping my head above water. Meanwhile DH and others were in the lifeboat and grumbling the cruise ship had gone down. Maybe a bad metaphor but you know.

But we were (and kind of still are) in the trenches and I do think we were slowly getting to a better place but those tendencies to laziness and selfishness are still there. Don’t get me wrong, there are great things as well. But that’s how I know from first hand experience that you cannot talk to him about these things, it’s impossible and you get nowhere, all it does is make everyone feel bad.

At the moment he is very, very ill. It’s not the right time to be laying the law down on where he works or when he works; it’s getting through the days. I hope that answers your question a little more nicely and again I am sincerely sorry for any misunderstanding between us.

I’m so sorry you are going through this OP.

I have a chronic illness which over the last 3 years has significantly worsened and the way it has impacted my DH and my children really upsets me. It’s had a huge toll on my husband in terms of how much more he has to do around the house and with the children etc and it’s been really hard for all of us. Yes the illness is “happening to me”, but it’s also happening to us as a family unit and my DH and my children are no less important than me. I’ve done all I can to make things easier on my DH and thankfully after three years of difficulties we seem to be coming out the other side of it, but it has been hard for him.

I 100% understand why you feel the way you do, it’s a huge strain on the partner who has to adapt to new illnesses/disabilities, as well as the person to whom it is actually happening to.

I’m not going to offer advice as I think you’ve heard enough of it, but I just wanted to give you some support from the other side of the coin (the disabled spouse) to let you know that most of us can see how much strain our health difficulties clause within the household/relationship and I’m sorry your husband doesn’t seem to be doing that yet.

In his defence, it may still be early days (apologies if I’ve missed how recently you said this has happened) and maybe once he’s come to accept his limitations he will start to see more how you have to adapt as a family unit (which means him making changes too) in order for you all to function together and he’ll start to engage in discussions as to what he needs to do in order to help the family run more smoothly.

There are also lots of posts offering support and understanding. Not everybody is trying to suggest a practical solution, though I understand why some are, and their intentions are good I think. Maybe focus on the posts that aren’t winding you up so much.

You write well and clearly OP.

Most of us are lucky enough not to have been in your shoes.
It’s OK to be at the end of your rope.
Yeah we can all recite the ‘in sickness and in health’ vows, as women we are drenched in messaging about our role: nurture, support, sacrifice and so on. You are reeling with the very harsh realities.
Parents of severely disabled children get the same. You can love someone totally / commit to total support, whilst the realities of caring drag the flesh from your bones. And it’s taboo to say it.
It’s not surprising you feel alone.

Sending another hand hold

@ScaredButUnavoidable thank you. I’m so sorry this happened to you. The truth is it’s just horrible for everybody. It’s pointless pretending it’s happening to just DH any more than it’s happening to just you. It’s affected my career, my hobbies, my friendships, my whole life. It’s not his fault and I’m not suggesting for a moment it is but that is the reality!

We will adjust but that takes time.

It’s called a disabled facilities grant and you literally have to be financially on the bones of your arse to qualify for one unless you live in council property, are claiming for a child, or are on certain means tested benefits.

The LA occupational therapy teams can provide the basics free of charge - things like grab rails and ensuring basic safety, but with two wages coming in it’s vanishingly unlikely that they would qualify for any meaningful assistance with bigger projects as the threshold for family income is low.

Besides, while we may well have to get some things I don’t want to be isolating DH further. If we did get this lovely garden room I’d probably never see him again!

@Gotitthanks - I think it is really important you try and take some time for yourself to just process it all, did you ever try Yoga or meditation etc. It is like you have to work on your inner strength and some form of inner peace primarily and finding that. I know it sounds like a massive cliche, but when trauma happens it is often our inner world that requires the most attention first.