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!

I think the evening when the dc are there needs to be a non-work time.
For the rest, I'd be tempted to get something like this and make him a booth to work in

You say he works 3hrs am. Then sleeps for afternoon. Then works again in evening but struggled to sleep at night

is it a catch 22 that sleeps daytime as tired from no sleep at night

or he needs rest /work tires him out

could he work 9-12. Lunch. Nap till 3. Then work 3-6. Can work say no working past 6 - how many hours does he have to work or they don’t mind

if he sleeps less day/afternoon will he sleep better at night - tho will take a while to reset his body clock

Garden room is out for him so needs to be in for you. So make it into a lounge. Sofa. Tv so have an area to relax in day / evening so get some time out from him

I get he’s had a huge shock and needs time to get used to it but he can’t ignore the kids - he needs to make time for them. Even if reading to them on his lap /on sofa or having a cuddle

important for you also to have time to process stuff

is this change forever or dh may get some movement back @Gotitthanks

This. Poor chap.

I was where you are last year. It is absolutely soul destroying, if you haven’t lived it, you have no idea. I know you might not think it possible as its all new but you need to get him out of the house. If you have a garden an adapted garden office could work?

Mine is disabled too but with adaptations he can drive and enter buildings so to preserve our marriage he now rents a desk in a local workspace. We’re both much happier, as he now gets to be part of a real work community again and we’re not trapped together in our ‘bubble’ any more.

YANBU :(

Is the specially adapted chair one he has to use all the time, as in provided following OT assessment and he would have even if he wasnt working - or is in one work have provided?

If it isnt one that work have provided, I'd suggest he asks work for an at home DSE assessment, including full chair assessment, and they will have to provide him with a suitable work chair (and desk etc if needed).
He should also go through access to work to see what else they can support with.

I get that it can be helpful for him to work flexibly, but realistically, has be gone back too soon, or for too many hours?
What would dropping his hours look like (even if on a 3 month temp basis)

I am quite surprised by your post if you really have that much experience as a disability outreach worker.

You say OP seems to be "wrapped up in how his disability affects the rest of the family" - well of course she is, why would she not be? Especially when she is doing all the child rearing in limited living space.

As for saying "at least he is working" as though she is mean to be grateful for any set up - even if that set up is detrimental to her and her kids. I find your lack of empathy for the OP a bit odd to be honest.

Based on your experience, surely you know that 2 things can be true at once. It is a huge adjustment for the DH of course and great sympathy and empathy for that, but since it is in a family setting, it is not only him that is impacted. He can be struggling to adjust but so can OP and that is what she is posting about. Telling her to be grateful that he is working when she is suffering herself is quite a strange take, to me.

Everyone has to adjust in a family situation facing such challenges, not just 1 person. And that adjustment surely requires considerations for the person who is sadly disabled, but also those who are trying to continue life around them.

You're allowed to ask him to stop working and spend time with you and the children. Is he going to get any better or is this going to be his level of disability from now on? I would probably be morose and distract myself with work if I were facing permanent disability tbh. Sometimes when my husband is being an arse I pretend I'm a single parent and organise my life accordingly. Maybe that could be a short term solution for you? Get support looking after the kids, spend quality time on your own or with friends and family. Let him be for now as he adjusts to his new normal.

How about using some of his disability benefits for help around the home, someone to do cleaning, ironing for instance, so it takes some load off you.

My husband had a stroke 7 years ago, he regained his speech and right side control but lost half of his sight and some memory and organisational skills. Our children were in secondary school so I can only imagine how hard it would be with little ones. We went from a family of 4 to our life having to revolve around him and I had to do all the household and parenting and we have a child with special needs.
He is the higher earner by far and to facilitate him working, as he can't drive, I had to drop down to very part-time, which obviously has effected my career.
I was told I had to mourn the life we had and the one we thought we'd have in the future and there are times I still resent it. You feel sad for him but it has really effected you and the children as well and other people don't always realise this.

Hopefully soon you can talk with him and work out times he can at least be present for the children and I hope you can get some support.

How about using some of his disability benefits for help around the home, someone to do cleaning,

It sounds like a good idea, but they won't be able to clean whilst he is working or sleeping so when would they be able to do it ?

It sounds like you’re both still in shock and going through a period of adjustment following his disability diagnosis.
From his point of view it must be a lot to cope with dealing with his new way of life and I imagine very depressing and possibly feeling he’s letting you and the children down hence withdrawing from family life. He’ll find a way through but it’ll take time and support.
And from your point of view your life has been turned upside down with a situation you have very little control over. I’m not sure I have any useful advice, I understand a little of what you’re going through…I have 4 children and 10 years ago at the age of 2 my youngest was diagnosed with a potentially life limiting and severe disability and will need 24 hour care and support for the rest of her life. Was it something I had in my life plan, no, however I wouldn’t change her for the world…she is my world (along with my other 3!)! Life has changed dramatically in many ways, one small example being our living room was turned into her bedroom with hoists etc but we found a solution by turning another bedroom into a living room, not ideal but it works. I’m not sure what I’m trying to say but when we had her diagnosis I decided all I could do was take things a day at a time and try make the most of all the good moments (it may not feel like it now but you’ll get these back I’m sure). Sorry for the long message!! Sending big hugs x

You haven't "become a single parent" because your disabled husband is working and providing for you financially. Your situation has changed but you are a far cry from a single parent.

Do you work?

I'm so sorry @Gotitthanks, that sounds so very very hard and my heart goes out to you 💐

Which is really nothing like the OP’s situation.

Do you actually work ?

He’s not in receipt of disability benefits as yet. From what OP is saying it sounds like he’s either awaiting an assessment or the result of one. There are no guarantees these days and being able to work will be used against him wherever possible.

He’s disabled. It sounds as though he has severe mobility issues. I seriously doubt he’s going to be able to use a camping toilet. Especially if his disability affects bowel/bladder function.

Thanks all.

I’m parenting on my own 🤷‍♀️ we can split hairs about it but that’s the long and short of it.

I wonder why so many are fixated on whether I work or not? I do work as it happens but have had to have some time off due to this situation, it is temporary though and I will be back at work soon.

When we get PIP we may well be able to look at a cleaner etc but IME it isn’t really that much help, with young children as you’re having to tidy / clean multiple times a day sometimes!

But we will persevere. It’s the 330-6 shift that’s so hard when one is in from school and the two of them are noisy and silly and I’m trying to get the dinner ready and sort the numerous requests and DH is just … there!

Does he go upstairs to sleep? Maybe a configuration upstairs for an office would work

It honestly isn’t just where he works, it’s when he works. With no set hours work has become a near constant presence. It’s a distraction technique but it’s also become a barrier.

OP have you requested a carer's assessment for you or an occupational therapy assessment or a rehab assessment for your husband? Are you still in touch with the hospital he was in?

It sounds really hard. What a huge adjustment for you both. Hopefully, in time, you will all be less ghostly and more seen by your husband/their father. It's a big adjustment and acceptance curve, of something you never wanted or expected. Take care of yourself -time out for a run, break away from dh and the kids even if it's 10 mins in the garden.

Would a murphy bed in your room work? So, at least during the day when he's working, the communal spaces are free?

If there's no way to make a space for him elsewhere, then I think a rule that he cant work between x and y o'clock would be reasonable. A set time when he is engaging with the family.

I'd also put a curtain up around his office space in the lounge so it's not a visual presence for everyone all the time. And if you can afford a garden room, it could be a second lounge for you and the kids if the lounge is pretty much off limits when he's working. Appreciate that may feel like you're being pushed out of your home, but it could be a lovely space and stop the resentment building up.

Make sure you're looking after yourself and the kids in other ways too, OP. I may have misinterpreted what you've written, but if your DH's disability is pretty much the entire focus of the household, you are on a spiraling path of doom. Make sure you and the DC get plenty of your own needs and desires met, even if the way you would have done so in the past is no longer viable. Go out if you need to. Make time for yourself if you need to. Spend on yourself if you need to.

You need you time to scream, vent, mourn. For better or worse this is an all round shit situation and the person with the illness can be incredibly selfish. They are feeling shit too, but being the carer/person left carrying the load often gets left behind.
Is DH ok to be left in charge of the DC if you were to go out?
Can you create a living space upstairs, a den in the garden office or in someway section off the downstairs open plan? If DH is hard to shift then the best thing is for you to have your own space elsewhere.
But do ask GP/health visitor or social services to find out if there is anything available that could help you.