Husband’s disability and parenting

Wife2b · 2023-12-15T07:14:01+00:00

Husband has ME/Chronic Fatigue Syndrome, it’s a chronic illness and he is registered as disabled. His ME/CFS involves exhaustion on his part, lots of napping during the day/after work when he finishes at 4. We had a baby recently, I am on maternity leave and he is working full-time from home. Pre-baby we would nap after work, eat dinner at 9pm and go to bed at midnight. He hasn’t shifted his sleeping pattern since baby has been born, whereas I no longer nap and go to bed at 8:30/9:30 when baby does. We are like passing ships. Since baby has been born, we have been very fortunate to have a family member stay to help with caesarean recovery, laundry etc. Family member has now gone home and honestly I’m finding it lonely and difficult to get things done as baby needs constant entertainment as she’ll cry if I put her down. Today I told husband that I’m struggling doing everything (looking after baby, laundry, dishes, bottles etc) and asked if he could start helping out. I do all the night feeds, the laundry, etc. Only thing I ask is for him to be around and not constantly in bed so I can hand baby to him so I can do the dishwasher/bottles/tidy/shower etc and so he can have some 1:1 with baby. I do all the feeds, nappy changing, dressing, bathing etc. He says I’m being unreasonable because I knew he had a chronic health condition before planning a baby with him. He said other single mum’s manage and he doesn’t understand why I can’t. My views are that his condition does not remove his responsibility as a father and therefore me asking him to help out periodically is not unreasonable. I’m back to my full time job soon and expect things will be tougher. I should also say that he loves our baby so much and is great at interacting etc. He’s also having a tough time at work at the moment and is struggling with anxiety as a result. He’s a good man, there is no LTB etc. AIBU?

Ohtobetwentytwo · 16/12/2023 10:07

I think you're all reaching the point of realising that with a baby he cant come first any more. When you ask him what changes he feels able to make, does he have any suggestions at all or is it all about how you should be understanding?

Surely there are tasks he can take on? Or he could take a shorter 4pm nap and go to bed at 830?

Sadlynitnspunds like he doesnt want to support you in putting baby first.

Make sure you get out and go to baby groups, I feel like oure in for a long haul here and need to start making your own life.

LIZS · 16/12/2023 10:00

And I would bet the day after such an excursion is a write off too. There needs to be balance between his wants and needs. There will come a time where he has to step up, an urgent medical appointment for example. A baby is easier to look after than a mobile toddler in many ways. If he opts out now he probably always will.

Flopsythebunny · 16/12/2023 09:51

Mojolostforever · 15/12/2023 10:28

Someone with chronic fatigue is totally incapable of doing the dishes or the laundry.
You seem to be very dismissive of what is an incredibly serious illness.

I have suffered from this, and even getting a shower was a major achievement and took two days complete bed rest to recover from.

Fortunately I have a brilliant DH who took on all the workload, as it was impossible for me.

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Yet he can manage an 8 hour day at a football match?

WmFnKdSg1234 · 15/12/2023 23:19

My view is that your DH could help when he is able by preparing everything and anything he can - meal prep, online shop, sorting laundry, etc. Like others have suggested he could try and hold/entertain baby for an hour while you have a break. I guess his attitude may need opening up - is there any local support group he could contact for guidance/suggestions and support?

WhatNoUsername · 15/12/2023 23:19

I don't have CFS but I do have a chronic health condition. I am really struggling to understand how you both thought you could both carry on working, you full time, with a husband with CFS AND add a baby into the mix.

My DH and I find it hard enough with no children, me working part time and him working a full time job with long hours. Most of the time we do nothing but work, sleep and jobs. It's a pretty shit life there is absolutely no way we could cope with a baby on top of that. And my condition doesn't cause constant, debilitating fatigue.

TreacleMines · 15/12/2023 22:30

Zanatdy · 15/12/2023 14:25

I have a chronic illness too which exhausts me and I’m in constant pain so I sympathise. But I’m a single mum and can’t just go to bed for hours. He’s a parent now and he agreed to have a baby, he can’t expect his life to not change. No reason he needs to sleep from 4-9pm. He needs to either have a shorter nap or try and power through and go to bed at 7.30/8 after dinner / babies bath time. He is being selfish not changing his life to help. If he doesn’t he will find himself single as trust me the resentment will grow and grow

It doesn’t work like that- if his body needs to sleep he will fall asleep. I can try and stay awake, but all that happens is I shake, vomit, slur my words and then fall asleep anyway.

I used to get my son in bed with me when I felt it happening- put him next to the wall so he would have to climb over me to get out and fall asleep with my hand on him so it would hopefully wake me up. He would sit there watching a tablet until I could wake up again. Or put him somewhere contained like the living room and lie down in front of the door so he couldn’t get out…

when he was an actual baby I basically couldn’t have him alone in the house- someone was there 24/7, until he was over 2- even then it wasn’t often and someone was ALWAYS on call to come. My wife got practiced at having him, bringing him to me when he was hungry, lying him with me so he could latch on and then taking him away when he was done- I wouldn’t wake up.

If I had know that pregnancy would lead to fibro and M.E I never would have had a child. I was fit and healthy before then.

TreacleMines · 15/12/2023 22:14

ArseInTheCoOpWindow · 15/12/2023 21:17

I couldn’t lie in bed for months, as my children would have been taken into care

Ive got CFS. I can’t get out of bed some days, I’m too weak. I can’t push myself l just collapse. I have a Dh. But my dc would have been taken into care if l didn’t. I’m just too ill and l hate it. Hate it. But pushing makes it worse.

The children probably wouldn’t have been taken into care anyway- unless they were babies. Mostly children become carers in that situation.

There are thousands of child carers in the country, forced into that position because of the utterly shit provision for disabled people.

TreacleMines · 15/12/2023 22:11

Universalsnail · 15/12/2023 11:07

I think there is a balance to be had. I don't believe his entire existence has to be work full time, family with every other shred of energy he has. I think it's completely fine for him to spend some of his energy on the things he also enjoys. Otherwise the man is going to end up very depressed. I resent the idea that if you are disabled or chronically sick if you prioritise at any point things that bring you happiness that are not work or family then you are bad for doing that. He deserves to be able to pursue his interests as does his partner. They both should be able to pursue hobbies.

But this has to be in balance with his partner's needs which are also important. So maybe he only goes to the football once a month and then uses his energy at the weekends to do more childcare. Maybe he reduces his hours at work to allow him more time in the evenings for family things. maybe they both go part time work and split childcare so neither of them feel overwhelmed and fed up with parenting. Maybe he stays full time but then they hire in help to allow both of them a quality of life.

I think it was incredibly niaeve to have a baby in these circumstances unfortunately and now they both have to work together to ensure that between them they are both trying to find a balance where they are parents, and can work if they want to and can persue hobbies and interests, but something's will probably have to give due to the contributing factor that he is sick unfortunately.

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I totally agree. I was only really thinking of the little baby stage where earning some money and all staying sane are the priorities of all new parents! Definitely for about a year my wife was either at work or doing baby stuff… I was either doing baby stuff or asleep!

Now we have a normal balance of stuff, albeit she has a lot of caring to do because our son is also disabled.

I agree it was naive to have a baby in the circumstances… not that disabled people shouldn’t have children, but we don’t become less disabled when we have them… if we can’t ’step Up’ before children, we won’t be able to after them- however much we might want to. So you have to go into it with a very solid plan, a very thorough understanding of what the limitations of the disabled parent will be, and preferably a good support network!

ArseInTheCoOpWindow · 15/12/2023 21:17

I couldn’t lie in bed for months, as my children would have been taken into care

Ive got CFS. I can’t get out of bed some days, I’m too weak. I can’t push myself l just collapse. I have a Dh. But my dc would have been taken into care if l didn’t. I’m just too ill and l hate it. Hate it. But pushing makes it worse.

Baublerwarbler · 15/12/2023 20:34

I'm another who "pushed through" and subsequently made ME worse, disabling myself further. You can't push through any part of it.

The way I gave up things to enable me to (single) parent differs to your DH though. In order to manage I had to give up my social life, hobbies, my career plans, a second child, relationships and anything other than the bare bones of life. Not much of a life remains but I have no choice.

ME cost me more than you can imagine, it makes me so sad to read the ignorance on this thread.

TomeTome · 15/12/2023 19:55

Well the choices are

A) he carries on working full time. and missing all the afternoon evening parenting and you pick up all the slack

B) he claims pip for his disability so he can carry on working and pays for the support he would give if he wasn't so exhausted

C) he carries on working and uses part of his salary to pay for the support
he is unable to, provide due to his disability

D ) he goes part time so he has enough energy to care for his wife and child

I don't think "a" really works so I'd go with one of the other options

Neitheronethingnortheother · 15/12/2023 19:36

Poppasocks · 15/12/2023 07:44

It amazes me how when women have these illnesses they always seem to manage!

My mother with ME didn't.

That's why my sister and I were child carers from a young age.

Universalsnail · 15/12/2023 19:32

I agree he needs to reduce work hours though if that is a financial possibility for them. The OP doesn't clarify if it is or not.

Universalsnail · 15/12/2023 19:31

Zanatdy · 15/12/2023 19:06

You’re wrong as my illness does exhaust me. No it’s not ME but I had several life threatening attacks which could and nearly did kill me. I couldn’t lie in bed for months, as my children would have been taken into care. What I’m saying is it’s all very well making zero life changes and leaving someone else to deal with your kids, but don’t be sorry when your partner leaves you. If pushed I’m sure this guy can make some adjustments after having kids, or if he genuinely can’t then he either needs to look at dropping some paid work or his relationship with wife and kids will suffer. Many people manage very serious diseases and raise children, because they’ve no choice. This guy has made zero change and sorry but I find that a bit unfair

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I am not wrong because as I said you do not have ME.

I am not doubting you have a serious chronic illness with exhaustion and fatigue.

But that doesn't mean that your illness fatigue behaves in the same way that ME fatigue behaves. You literally can't keep pushing through ME fatigue because you really will make yourself bed bound kids to look after or not. That's how this particular illness works. When I was bed bound I didn't have a choice but to lie in bed for months I literally couldn't get up, honestly I am not exaggerating if I had been a single parent my children would have had to have gone into care. I got that sick from pushing through crashes instead of resting and going to bed.

I have no doubt you are experiencing extreme exhaustion and illness but it doesnt sound like your particular illness is the same as ME. You maybe be able to push through with your illness but ME is a different illness and you can't push through with ME without making yourself more and more disabled.

jenny38 · 15/12/2023 19:29

Ok, I see the issue as that your do is working full time. This is making him so I’ll he needs to lie down sleep afterwards. He’s doing too much and eventually his cf may get worse due to this. Can he reduce his hours? Definitely apply for pip and get good quality help from a specialist charity, to help do the form.
when your dp is working less, he will be able to give more to family life. It must be incredibly frustrating on your end to be so tired, but your dp is working himself into the same state daily. Something has to give.

Zanatdy · 15/12/2023 19:06

Universalsnail · 15/12/2023 18:46

This is terrible advice sorry. You may have a chronic illness but you clearly don't have ME/CFS and your advice is likely harmful for those with ME fatigue.

You can't power through with ME with out significantly increasing the likelihood that you will cause a crash which puts you in a boom and bust cycle. Over the time that can drop your baseline making you more fatigued. With ME you can literally cause yourself to become bed bound through pushing through and not resting when needed.

He probably does need to sleep that long after working a full time job. That is alot. He risks becoming increasingly disabled.

When I first got ME I ignored advice and pushed through. I ended up in such a bad crash I couldnt get out of bed for months and If I had been a single mum at the time my children would have had to have gone into care because no amount of loving them would have enabled me to actually be physically able to have cared for them.

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You’re wrong as my illness does exhaust me. No it’s not ME but I had several life threatening attacks which could and nearly did kill me. I couldn’t lie in bed for months, as my children would have been taken into care. What I’m saying is it’s all very well making zero life changes and leaving someone else to deal with your kids, but don’t be sorry when your partner leaves you. If pushed I’m sure this guy can make some adjustments after having kids, or if he genuinely can’t then he either needs to look at dropping some paid work or his relationship with wife and kids will suffer. Many people manage very serious diseases and raise children, because they’ve no choice. This guy has made zero change and sorry but I find that a bit unfair

Universalsnail · 15/12/2023 18:48

There is an awful lot of ignorance about ME /CFS in this thread

Universalsnail · 15/12/2023 18:46

Zanatdy · 15/12/2023 14:25

I have a chronic illness too which exhausts me and I’m in constant pain so I sympathise. But I’m a single mum and can’t just go to bed for hours. He’s a parent now and he agreed to have a baby, he can’t expect his life to not change. No reason he needs to sleep from 4-9pm. He needs to either have a shorter nap or try and power through and go to bed at 7.30/8 after dinner / babies bath time. He is being selfish not changing his life to help. If he doesn’t he will find himself single as trust me the resentment will grow and grow

This is terrible advice sorry. You may have a chronic illness but you clearly don't have ME/CFS and your advice is likely harmful for those with ME fatigue.

You can't power through with ME with out significantly increasing the likelihood that you will cause a crash which puts you in a boom and bust cycle. Over the time that can drop your baseline making you more fatigued. With ME you can literally cause yourself to become bed bound through pushing through and not resting when needed.

He probably does need to sleep that long after working a full time job. That is alot. He risks becoming increasingly disabled.

When I first got ME I ignored advice and pushed through. I ended up in such a bad crash I couldnt get out of bed for months and If I had been a single mum at the time my children would have had to have gone into care because no amount of loving them would have enabled me to actually be physically able to have cared for them.

dishyrishi · 15/12/2023 17:00

He is wallowing. I say this as someone with a chronic illness/fatigue and a disability, someone who has two kids and also works full time.

My husband does a lot, but I still carry on, it's exhausting yes, but he's a parent too.

hellsBells246 · 15/12/2023 16:51

Hmm. It does sound as if he's being selective about it, and that would really poss me off.

These are things he has stopped

He finishes work at 4 then sleeps until 9pm. I often wake in the early hours to find him playing on his phone as he can’t sleep.

Sounds like he's napping too long earlier! He needs to cut down that nap. Then he can actually step up and parent.

hellsBells246 · 15/12/2023 16:49

So he naps after work then goes to bed at midnight?? Why doesn't he try going to bed a little earlier?

TomeTome · 15/12/2023 16:19

I don’t understand why he doesn’t claim pip if he’s so disabled by his condition he can’t care for his wife and child? If he doesn’t qualify perhaps he should step up.

Aozora13 · 15/12/2023 15:38

Wife2b · 15/12/2023 14:21

For the poster who questioned how I know he loves our daughter. I see how his face lights up when he sees her, and in return she beams at him. He speaks of her with such love and affection. There is no doubt in whether he loves her.

I should also mention that whilst he struggles with physical things. He looks after us in other ways eg by taking on admin such as organising finances, insurance etc etc.

I probably sound like a wanker but to me love is an action not a feeling. At the height of my illness it broke my heart not being able to care for my kids. I’d have them in bed with me doing colouring, watching videos etc to give my DH a break even though it was physically painful for me. I‘m absolutely not suggesting total martyrdom and I completely agree with others that you can’t just “push through” CF. I just don’t think he yet understands what being a parent actually means and if he wants a meaningful relationship with DC he needs to do more than taking care of admin.

pickledandpuzzled · 15/12/2023 15:28

What if he does an hour with the baby before he naps? That may make a massive difference for you.

uncomfortablydumb53 · 15/12/2023 15:20

Have you both heard of the spoons theory? Basically it's learning to pace yourself trying ways to incorporate resting around daily life
I have CP which involves pain and fatigue and have 3 adult DC( with a useless exh) and this is what I had to do
Although I realise CFS is on a whole different level the principle is the same
Also think about adaptations like a perching stool and shower seat which all save a bit of energy
Frankly it's not just his disability which is an issue, it's his attitude too.