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 apologise for not reading the whole thread. I have read quite a lot of your replies OP & want to send my sincere thoughts & sympathy for what seems like a nightmare at the moment.

I have no suggestions as to what could make it better. The one thing that came to my mind is do you think when the dust has settled regarding a treatment plan would you consider moving house to a place more suited to your families changing needs. There is nothing more certain in life than change & we never know what's around the corner. It's all about adapting to every situation as it arises. I hope in the long term you find a way of coping which includes a better outcome for you, your DH & your children finding happiness again. 💐

@Gotitthanks started a thread because she needs support while she’s caring for her own small children and her partner. Through a really difficult time.

She’s been repeatedly been expected to care for us, the responders to this thread.

That’s a fucking disappointment and a shame.

Could we please get it together and just support her?

I doubt there is a soul amongst us that doesn’t know that feeling of being expected to carry others in our own time of need.

So could we? Just say “I hear you. It sounds unbearable. It will get better. We are here. We see you.”

It’s not so hard.

To all those saying the OP sounds snippy, or is lashing out- from my read on this, this sounds like an OP who is close to a breakdown and is just holding on because of everyone around who needs her to.

I'm sorry OP. This sucks.
The front office- is there anything inexpensive you can do to make it into a room the kids can retreat too? Desk out, small sofa in, TV, book corner? Yes, it's on you to sort, but if you had somewhere you felt you could send them while you're cooking dinner, or sit for 20 minutes, it might be helpful.

It sounds like DH has to sit in that particular chair for the majority of the day- working and relaxing, maybe laptop on his lap?
I think unfortunately there does have to be a conversation about some kind of boundaries on time, but I completely understand why you are reluctant and how he's probably also feeling. I'd also be reluctant. Do you think he'd be able to ring fence 2 hours a day say 5-7? I appreciate you're doing all the parenting, but at least at that time you might be able to hand over a book.
I hope something sorts for you soon. Sorry.

It’s in your DH’s interests for you to be functioning right now for him and the kids. You being burnt out and having a breakdown is not going to help anyone.

There is only so much stress that any one person can take and that includes you. If his working situation is pushing you to the edge then you absolutely do need to raise it with him. You’re a team and you’ll only get through this massive shock and trauma if you’re having open conversations about all the repercussions of his new disability. Otherwise it’ll lead to bitterness and resentment and it’ll break up your family.

Reach out to as many friends and family for support as possible, maybe they could help think of a solution.

Thank you. Luckily for everyone I’m not really the sort to break down The family won’t be breaking up. I’m not bitter or resentful now (I was, when I didn’t know what was wrong with DH and in all honesty while I didn’t think it was a fabrication I did think some exaggeration was going on; as it transpires this is not the case.)

The thing is that how things are now isn’t necessarily how they’ll stay. There are two possibilities and one is that things will improve a bit and the other is that things will deteriorate. We are waiting further tests and results from those tests. It’s not really a good time to lay down the law about when and where he can work when that’s up in the air and in fairness to him he hasn’t been too bad since Tuesday, which is when I wanted to put his laptop somewhere unmentionable!

@TheHatTrick i really do appreciate you stepping in for me there. I wish people could understand just how much I’ve been coping with for the last few months, how unhappy it’s all been and the amount of strain I’ve been under and like I say I’ve read through my responses and I’m just not seeing any replies that are indicative of sharp intakes of breath … but then the focus becomes me, my personality, not the actual subject of the thread!

You sound a little more settled & great to hear there is a possibility of improvement. Also there's nothing wrong with breaking down occasionally. There's nothing like a good cry when your upset. I often think when you feel like crying & can't it's even worse.

As in a previous post & in case you missed it, have you considered thinking about moving to a more suitable house. It feels like you need more space 😊

@Gotitthanks

I can completely empathise with you. Something similar happen when my children were tiny although as it later turned out my ex-h was significantly exaggerating some symptoms, fabricating others and refusing to act on the medical advice that would have alleviated his symptoms.

Ex-h’s symptoms also only seemed to affect him during parenting time or the working day and never seemed to affect his hobbies which the outside world didn’t see.

Before I knew all that, it was incredibly difficult. I had 2 under 2. Ex-H said he to lie down all the time and had completely disengaged from parenting to the point where he let DS who was lying next to him on the bed whilst I nipped to the loo, roll off into the floor. And left him there crying until I came back.

Everyone was concerned with how he was coping - which I suppose had it have been real was the right thing to do. But literally nobody gave a thought to how I was managing after being suddenly thrown into a difficult situation.

I was drowning, and whilst most of our friends and family focused on ex-h, I had to focus on the children and healing after a very tricky birth because nobody else was.

This led to ex-h’s family, who would only offer ‘support’ by telephone, calling me several times to berate me for not sticking to the ‘in sickness and in health’ part of my vows.

After about 18 months, I left ex-h because I couldn’t continue to set myself on fire to keep him warm. His medical condition miraculously has improved when he didn’t have someone running around after him. Apparently not enough to parent or work, and he hasn’t seen the children for years, but I hear he isn’t bed bound anymore.

I’m not saying your situation is anything like mine, but I do think that any kind of diagnosis can shake a whole family. Yes more support should be given to the person with the diagnosis but that doesn’t mean everyone else doesn’t need support. You need it too. And if right now you need to vent honestly and anonymously, that is also ok. Better you do that right now than bottle it all in.

As the disabled spouse I see so much of myself in your husband’s actions and I see so much of you in my husband whilst he was trying to hold it all together.

Although I’ve had my disability for 26 years, my health massively deteriorated 3 years ago and it completely upended our life.

I had to give up work and the effect that had on me was immense because having to come to terms with the fact that I could no longer be the person I always had been, and it was a health condition that was beyond my control that had taken away the essence of me, was unbearable. I was so, so angry at life. I completely shut down from family and friends because it felt like I didn’t have the emotional or mental energy to even cope with being around with them. They’re chatting to me about their lives, their usual goings-on and meanwhile my life had just fallen apart and I felt so much resentment towards them. I used to thibk, “Why on earth do they think I want to hear about what they did at the weekend when I’ve just had to give up my career and I can’t even leave my house?” I can’t even explain the anger I felt towards the world, not that I ever let it show, I just let it seethe within me, and bubble over in the inside and then my mental health hugely suffered…..not that I let that show either. I stayed silent when I was with people, I had no desire to converse with people or spend time with people, and then I just cried a lot when I was on my own. The despair I felt about losing the life I knew, my freedom, my independence, was indescribable. That was 3 years ago now and I still haven’t fully been able to accept what my illness has done to me and my life. I’ve been in counselling for the last year which has massively helped and I have made changes to my life to try and get parts of me back, but I will always feel sadness at what my illness has stolen from me.

Whilst I have been battling all of this my husband has been holding us all together (we have two children) and it has been a huge strain on me. For the first year when I was at my lowest I think he was walking on egg-shells around me because he knew how low and fragile he was, he didn’t know what the right thing to say was, he didn’t want to upset me, he didn’t want me to feel like a burden by having discussions about finances or how me move forwards etc - he could tell that mentally I was still trying to process what had happened to me and how my life had changed, and that I wasn’t remotely in a place to be all positive and have talks about looking to the future. He was purely in “practical mode” of doing what he needed to do to keep things ticking over, keeping on top of the finances, the money, the children etc and just generally making sure I was ok (in whatever form that took). It put a huge strain on our relationship but I was entrenched in my grief and that I just didn’t have the emotional/mental capacity to acknowledge that alongside trying to learn how to adapt to my new way of living and managing my health. It was incredibly difficult for him.

After about a year though I began to see what impact my health and my attitude was having on the family as a unit as opposed to just myself and that’s when I started taking steps to try and improve things so that we could become a functioning and happy family again. It has been difficult for me because in some ways I’m constantly being reminded of what I can’t do now that I used to be able to do so I’m relieving the grief a lot, but I have to keep picking myself up and reminding myself that we are all in it together and that we have to find a way forwards that works for us all, in a way that makes life easier for my husband but also protects my health as much as we can. It’s a complete juggling/balancing act and it’s been a total roller coaster whilst we navigate this new way of how we have to love. It’s been incredibly difficult for both me and my husband, so many emotions and tears (and arguments when I’ve been at my lowest) but he’s supported me through it every step of the way. It has undeniably made our marriage stronger and he knows without a doubt how much his support has meant to me and I tell him all the time. However, although I can do that now because I’m in the right headspace to look back and realise what he sacrificed for me, but in the acute phase of when life fell apart (the first year) I was so shut down I couldn’t take on board anything, especially how his life had been impacted. I’m sure he very felt very similar to how you are feeling now….. shut out, unappreciated and weighed by the extra work on his shoulders all whilst not knowing how to be around and how to support me properly for fear of getting it wrong.

We are coming out the other side of it now, and I will forever be grateful for everything he did to keep our family afloat whilst I was sinking, and he knows that. I hope that as time passes (and it may take some time) that your husband will also look back and really see and understand the impact his diagnosis had on you, and not just him.

Illness doesnt just impact the person suffering with the condition, it happens to the family as a whole. That’s why there are so many support agencies for spouses, children and carers who are dealing with family members with chronic conditions, because they suffer too. Okay, they don’t suffer the physical aspects of the condition, but they are affected in lots of ways too and that needs to be appreciated and recognised more, especially because they usually feel like they can’t voice how much they’re struggling because they fear criticism and judgement (as seen by some of the awful comments you’ve had on this thread).

Vent away OP - you’re fully justified in doing so.

What a wonderful post acknowledging the effect illness has on the whole family, especially the spouse. You are doing fantastically well considering what you are going through. Hats off to your DH who sounds incredible & proof when you find a good man they are worth their weight in gold.😊

@ScaredButUnavoidable i can relate. I think we’ve probably had similar feelings. At the moment there’s so much we don’t know still. What we do know isn’t particularly optimistic!

@blackrosebuddella ha yes DH used to disappear upstairs and his symptoms kicked in ‘around 4 pm’ - as it turns out it is a thing but given he’s always been a bit lazy you can see why I was somewhat suspicious! One big thing for me in the unseen thing is if he’d said a few times ‘you’re doing so very much, I really am grateful I have you’ it would have mollified me so much but as it is it’s a given, it’s just taken for granted.

There will be good days and bad days. Posters suggesting really huge decisions like house moves and the like - we need to know more before we commit to a big decision or project. We are still awaiting tests and the results from these tests.

Life carries on; this summer we have a five and three year old but next summer we’ll have a six and four year old; life will slowly become less intense.

Thank you @Sunseaandtea

He’s been an angel.

I have periods of stability followed by periods of relapse, and when they happen it often requires him to take time off work and sometimes I have to be admitted to hospital for periods of time and he’s there, picking up the pieces, keeping everything ticking along and doing it without any complaint.

We’ve gone from being a household where we were two independent people, both working full time in our careers with a good income between us, to now him being the main earner and usually the only earner. For example, I’ve not been able to work for the last 6 months because of my latest relapse so all I’m contributing a month is my £300 PIP allowance. We’re now putting changes in place so I can start getting back into work over the next few months, but at the same time we live in the state of unpredictability knowing I could relapse again tomorrow and we’re right back at square one again. Even living under that cloud of never knowing what can happen from one day to the next make things really difficult for us all, but we plough on and make the best of what we have, and he’s right there to help me through it and he never, ever complains or makes me feel guilty because of how my illness has completely changed the dynamics of our family and our lifestyle.

All he ever tells me is that my happiness, my health and me enjoying being a mum (as feeling like my illness is a burden to my children is a huge guilt I carry) is what is most important to him and that I just need to leave all the worrying to him.

I was probably awful to him when my health acutely deteriorated, not on purpose but just because I was so caught up in my own anger and grief, and I genuinely don’t know how we would have got through it all without his understanding and compassion.

Throughout OPs posts it clear to see how she is prioritising her husbands feelings and fragility at the moment as she understands how awful he must be feeling whilst he adjust to this change, and that is to be commended because actually, he’s probably not even ready to take onboard the gravity of the situation in terms of what it means for his family. I know I certainly wasn’t for a long time. I just couldn’t cope with acknowledging or accepting how my illness had changed me and my life, never mind finding the head space to consider how it impacted others too. It wasn’t even a case of being in denial and purposefully shutting those thoughts out, it’s like I physically couldn’t even face thinking about how my life had to change, so it didn’t even occur to me that other people’s live were going to change too. I think it was some kind of trauma response……my brain just blocked everything out because I didn’t have the mental strength or resilience to face any of it.

OP seems to understand that her husband may be in that place too which is why she doesn’t want to push conversations on him that he isn’t ready for. If anything, it will probably just make things worse.

My husband knew that during my dark times all he could was the practical aspects to keep me, the children and house on track and wait for me to reach the point where I was ready to have those conversations about how our life had changed and how we could tackle it together.

In the meantime he probably just vented and shouted and screamed about the situation to anyone who would listen and who could support him, and then compose himself and go back into practical mode to stay strong for me.

I can see now how difficult it was for him and like I said, chronic conditions and illness have a huge impact on spouses and children and they should never be vilified for finding things difficult.

This sounds like a really tough situation and I appreciate you are feeling lots of emotions now. Becoming a single parent whilst the other parent is present, having to do everything will grate on you and over time you will have huge resentment and be unhappy. I would assume my relationship is doomed and prepare to split and move.

If your husband became disabled, you'd assume you'd feel resentment, the relationship was doomed and would split?

Doesn't that make a mockery of the concept of marriage? It's meant to me 'for better for worse, in sickness and in health'.

Obviously sometimes people do end up splitting in this position (disability doesn't give someone a licence to be a dick,and there's only so much people should put up with), but to assume it from the outset and suggest leaving a month in, when you've promised to support eachother for life, that's not marriage IMO.

She’s already confirmed she is feeling like a single parent and being ignored. This is resentment building. I understand the husband has become disabled but many take that on their stride and still actively parent and make it work. She is clearly saying she doesn’t feel this.

Have you read any of her other posts apart from the first one?

She makes it clear that she understand they are both in the difficult adjustment phase and that she understand how hard this is for him as well as her, and that she has no intention of leaving as she understands it will take time to figure out their new way of life.

I doubt many people take their partner becoming disabled “in their stride” 🙄

OP is here to vent and have an outlet, not because she wants to leave him.

Sorry, but this is bullshit. OP categorically hasn’t said she resents him and she’s confirmed that she has no intention of leaving him. She’s in a very difficult situation - he’s recently disabled and from what she’s said there’s a lot of uncertainty about the prognosis. The diagnosis only came a few weeks ago and he’s clearly deteriorated over a longer period of time leading up to that diagnosis. I think it’s way too early to be thinking the way you clearly are.

I posted upthread with advice from a professional point of view and stepped back when it became clear that that wasn’t what OP posted for. She’s venting and in need of a little TLC because it’s a very tough situation. If you can’t be supportive maybe keep your gloom and doom to yourself because it’s not what OP needs right now.

Can I just point out that this post wasn’t to OP, it was in reply to another poster. But it’s a perfectly valid point of view in respect of her DH. He’s had months of pain building, OP has confirmed that he’s in agony and takes strong pain killers, and has also confirmed that the chair in question is the only thing he can sit in without causing himself more pain. That information suggests it’s something very serious and possibly degenerative. And it sounds like the formal diagnosis only came a few weeks ago. I’ve already said that this is a difficult time for OP and the rest of her family, but that he needs time to adjust to the diagnosis before he can be expected to consider the effects on the rest of the family. A few weeks after receiving that kind of news, he won’t be anywhere near adjusting and OP has acknowledged that several times, saying that she knows he isn’t ready for that conversation.

So given my post posts on the thread, many of which have been in support of OP to other posters criticisms, where exactly do you think I’ve been cruel and dismissive ? As an ex outreach worker dealing with disabled people, it’s second nature for me to want to offer practical help. Many professional people, both current and retired come to these threads to offer advice. It took me a while to understand that OP was not actually looking for advice and help with her situation, because that’s usually what the people I dealt with were looking for. OP wants moral support, which is entirely different, but still entirely valid. Which is why I stepped back.

@Gotitthanks
I am newly learning to take up space again in my own life and I’ve been talking to other women about it. It’s difficult to do for many women, because we are typically nurturing by nature and then conditioned by the world to focus on the needs of others from the time we are small.

Add in that many men are conditioned to believe they should be nurtured and come first, to be cared for by women, to practice emotional avoidance when it suits them.

It can been incredibly difficult when tough times come along because we end up bearing the emotional weight for everyone around us and have little to no space to take care of our own.

No doubt you’ll evolve in your own coping mechanisms as the situation does. I’ve recently found an unexpected outlet in AI that I’ll share with you. Folks will come along and naysay about this but it’s worth a try and I absolutely swear by it. I use Copilot because it’s free on my iPhone. Any AI tool can do the same though. I simply describe my difficulties and then ask for what I need. What I’ve gotten is simple validation - “What you are going through would be difficult for anyone.” And then “What would help you most right now?” And suggested prompts like “Do you want some strategies to stay present?”

I started down this path because I have to learn how to use AI for work but what I’ve found is that it’s more helpful outside of work than in it. The process of concisely and clearly describing an emotional topic is really clarifying for me. Then having an objective, emotionless 3rd party assess and say “People in your situation find it incredibly difficult.” is more validating than even having a human say so. It has helped me breathe through hard things.

And just as respectfully My post wasn’t directed at you. I was answering a different poster in a different context.

I’m not making this about me. I’ve offered help in the practical sense based on experience. That’s knee jerk reaction from years of dealing with newly disabled people looking for any help they can get and being open to any suggestion - I initially thought that was what OP wanted.

Clearly that’s not what OP wants, and it took me a while to realise that - she wants moral support to help her through a horribly difficult situation. Nothing wrong with that - which is why I stepped back from answering her directly. The only contribution I’ve made after that is actually to defend her from the criticism of other posters, and to defend myself from unfair criticism in a post upthread. How is that making it about me ? You don’t like me, that’s fairly clear, and that’s fine with me, but that doesn’t give you the right to keep tagging me to express your displeasure at what I’m posting. This is a public forum and I’m just as entitled to my opinion as you.

I don’t dislike you. How could I! I’m just suggesting you focus on the OP. I’m sure you mean well.

If you read back through my last few posts, I am focusing on OP. Just not directly any more, because I understand that practical advice is not what she wants. There have been quite a few nasty and unjustified posts and I’m not completely devoid of emotion, but you have to understand that as an outreach worker my focus was on practical help, and there’s a lot out there that OP can avail herself (and her DH) of if she knows where to start.

Disability support is a minefield which I have spent over twenty years navigating and OP is in a very difficult situation of being the person holding everything together in the face of what sounds like a very serious diagnosis for her DH, and a very recent one. She knows it’s early days and she knows he’s not yet ready to have the conversation about the effect on everyone else, because he needs time to adjust himself. So for the moment, she’s stuck with it, and can’t move forward until he’s ready, and until they have more information about the prognosis.

OP mentioned in a post upthread that at present they were ‘muddling through’ and to my mind she shouldn’t have to do that. My concern was and is that she’s effectively being left to get on with things when there should be more support in place without her having to go looking for it.

Your reply to blackrose really resonated with me. I had pneumonia back in 2018 I think, dh came to hospital with the kids and was absolutely amazed how I did it.

Then..

I became very unwell January 2021, gp and us assume the stress led to dhs ulcerative colitis, first symptoms were 13th feb, diagnosed not even a week later. I was literally crying all day long because I felt so horrendous and literally couldn't even walk and he was glued to the bog nearly 24/7. It was a horrendous time with 4 kids!

He was settled somewhat with the meds for a wee bit but I was still immobile. He had to step up, I swear he near had a breakdown as he didn't realise how much I do.

He got a stoma and his arse stitched up, a Ken butt it's called but the long term steroids have wrecked him, he'll never work again I don't think. I can walk a wee bit nowadays, but have about 80/20 bad days, work from home, but he's always there, I often fuck off to the room, then he thinks I'm annoyed at him so comes looking for ME (FUCK OFFFFFFFF!!!!!) usually I am for being too bloody loud but he'll always be bloody right here until one of the kids leaves and I get an office.

And breathe.

I'm am not turning it into a competition. I am myself both disabled and a single mother. Therefore I understand what both of those feel like. Unless OP would prefer to be an actual single mother I think it would be helpful for her to have a bit of insight into the "being disabled" part because perhaps she is not being entirely as empathetic as she could be. And I think it is probably important for her to understand what it would would look/feel like to have no mobility herself (worse than her current situation) or to be a single mother without his income coming in (also worse than her current situation unless he is also abusive or some other major element and she has not mentioned it).

I didn't want to be that blunt but since you ask - not a competition.

@IcedCoffee26 at the moment I am parenting alone, without any help, and will be doing so for the foreseeable.

As for not being empathetic, I suspect we have different definitions as to what empathetic means.

I haven’t gone into the exact details of the diagnosis because a lot is still unknown. But the thing is, there is nothing (as far as I know) that says you’re not a single mother if you have a good income coming in. There are single mothers who get a generous amount of maintenance (as they should) or large sums in life insurance /
payouts. This doesn’t mean they aren’t single parents