Husband’s disability and parenting

[Wife2b]

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?

Well I think attending football etc has to stop. He can't continue doing the same extra stuff now he has a kid. He has to drop all of that and focus on the baby and you!

I think you need a honest frank chat about the football and that like a lot of new parents that may have to go.

Then maybe recognise the limitations he has but that he does need to try and balance out some time to take the heat from you because otherwise you will burn out - and that you run the risk of going down as well

!E isn’t an excuse to be an arse

@Wife2b you answered your own question in your second post. Your DH is being selective about what he can and can’t do. He is prioritising himself above you and your baby I’m afraid.

If your husband has limited energy, he should save it for what's most important. Which is not football.

WTF if he has enough energy to spend 8h at a football match he has enough energy to hold the baby for an hour every now and then!

Thanks for all your comments, I’ve not managed to read through all yet. There’s certainly a lot to think about.

I don’t mind him going to the football as it’s only once a month and like I say it’s a little piece of his life he has left since his diagnosis - he’s had to give up all of his physical activities.

I do get down time - not from baby but my friend visits approx fortnightly and we go for coffee etc which is nice. She’ll entertain baby if I need to get things done.

It’s difficult as we met when I was young (19) and we’ve always wanted children. His ME didn’t come into play until around 7 years later, we’ve always had a goal of having a family. He just seems to be struggling to adjust and after our conversation last night, I’m not sure where we go from here as I accept I will always be the primary caregiver but I would like him to at least be present so I can do things and he can supervise baby. He naps in the bedroom, I can hear him setting alarms but I know he really struggles to get up from them. I love him dearly and in some ways feel I’ve lost the man I fell in love with because his condition does cause him to feel overwhelmed and grumpy at times. I want to support him but finding things difficult myself.

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 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

OP, I feel really sorry for you. Not only has DH prioritised himself above you and his newborn baby, you sound so resigned to his needs coming first. Be careful - you are likely to end up as his carer if this selective trajectory continues. You worry about him losing himself, make sure you don’t also become subsumed. 💐

I don't manage.

I worked part-time with a serious chronic pain condition and then had a breakdown with dissociative seizures.

I now don't work at all and am currently living off savings while trying to think how I can do some work without being carted off to hospital every week.

I find it can be helpful in these situations to think about loading.

When a couple has a newborn baby, for a while both of them concentrate on the baby.
For example, many couples split the night time get ups, either on a I'll do min/tues/wed you do thur Fri Sat or on a you do early (6pm to midnight) and I'll do late (midnight to 6am)

They often both stop outside hobbies etc in order to spend time meeting the baby's needs and making sure meals are cooked etc.

Because of his disability, he can't do this at the level an able bodied adult would. Let's say he can operate at 80% of able bodied - this is the time you really really miss that 20% because the load in the household is really high and you're the one that has to meet it.

So, suggestions.

1 reduce load by outsourcing everything you can. Cleaner. Ironing lady. Housekeeper even.

2 you don't mention your financial situation. If you want additional support then there are a number of options:
Dh takes some leave from work so he can support you short term
Dh drops a day or more at work semi-permanently to support you and the baby
You employ a night or day nanny short term

3 you mention you had family supporting you until recently - can they come back/ can you get someone else?

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.

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

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.

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.

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

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.

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.

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.

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

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

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.

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.

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.

My mother with ME didn't.

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