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?

You lost me at going out / to the match etc

He can't possibly help you with the baby, but can fuck off out on a jolly?
He can't possibly help you (THE MOTHER OF HIS CHILD), but can hold down a full time job?

He's yanking your chain and you're putting up with it.

When do YOU go out with friends? When do YOU do your hobbies?

Having ME doesn't preclude or exempt you from your responsibilities - he's using it as an excuse and you're allowing it.

M.E is weird- I can sleep nearly all the time for several days and then not be able to sleep and up til 4 am or so for a week. I rarely sleep like a normal person!

Pain levels and medication can disrupt sleep too.

Can he not cap the nap after work to an hour so he gets quality time with you and baby and then go to bed at 9? I’m not sure what discussion you had when planning to fall pregnant but presumably you must have known his current routine would not be compatible with family life. Not so much when they are newborn but as a toddler? When they are at school? When exactly was he thinking he’d actually spend time with his child?

Honestly given his disability, I would never have planned a child with him. It's obvious I'd have to be the only functioning parent. I'd question his usefulness to me. I wouldn't want a baby with someone who naps continually. It's going to get a lot harder, toddlers run around and are exhausting. If he can't help you now, then life will get a lot more difficult. Could he take over at the weekend, letting you rest? Do not have any more children with him.

I support people with chronic conditions including ME/CFS and while I appreciate where you are coming from I can also definitely say that fatigue isn't something you can just push through to get things done. When people try to do that, it leads to deterioration in their condition.
It's not uncommon for family members to lack understanding because overwhelming fatigue just isn't something most of us can comprehend. I would say you got a little taste of that now you are finding yourself chronically lacking in sleep, time and energy to do things.
The fundamentals of managing ME/CFS is remaining within baseline of activities to prevent flare ups, pacing, regular rest and minimising the demand of activities. It is quite likely that in order to be more involved with the baby, he will need to let go of other things he is doing which may include cutting back on work. Are you in the financial position to do this?
If he is in receipt of PIP, I suggest you think about ways it can be spent to reduce pressure on the family - cleaner, online shopping, ready meals, assistive equipment for him.
It's a tough situation and doesn't have a clear answer. But I think it is important to recognise that he can't just take on additional load without suffering consequences.

Reading your updates, YANBU. I have psoriatic arthritis which causes pretty bad fatigue and I'm in pain a lot of the time, so I do have some understanding of what he's going through. My condition suddenly appeared about 6 months post-partum and looking after DC is no joke. I manage to work, contribute to household tasks and look after my son, I just do it a bit differently.

If your DH was so severely unwell that he couldn't manage caring for himself etc (as some PP describe) then my advice would be different- he can only do what he can do. But if he has capacity for lengthy socialising, he has capacity to be involved at home IMO.

My take is that he has to prioritise when using the energy he has- that's going to take willingness on his part and a bit of creative problem-solving. His DC and you need to come before socialising, but you may also need to structure your days differently to a family where neither parent has a chronic illness.

-If finances permit, is there any scope for him to change his work to something more flexible? I freelance, and pace myself throughout the day- short burst working, short rest, 2 minutes just making something in the house slightly better. My energy is often very low, especially in the mornings, so that might mean literally wiping down one worktop. I repeat this work-rest-clean cycle all day, and get a surprising amount done while feeling much less tired that I would hitting one task hard (I know I'm extremely lucky to be able to work like this. But maybe pacing might help him when he's not working- splitting cleaning into microtasks with rest in between instead of longer chunks).

-Accepting that house is not going to be perfectly tidy. Everyone is fed and alive, that's good enough for me.

-Meals are simple so nobody's time is spent cooking anything complex. Pre-cut veggies, we eat a lot of salad vegetables to cut down on washing up, low-prep meals like jackets and beans, and I batch cook when I am having a good day so I have quick, healthy meals ready when I'm feeling bad.

-Systems for everything to make every household task as low-effort as possible. Dishwasher is a lifesaver (we got a cheap one from Facebook)

-Playing to each person's strengths. I can't lug a hoover around the house but I can organise finances. DH prefers physical work over mental work. So we split responsibilities to suit each other's abilities.

-not relevant to you now but with an older DC. I find it helpful to have lots of tabletop activities on hand that I can do with my son but that are manageable sitting down. Lots of magic painting, board games, sticker books etc. We pace ourselves through the day- something more active, sitting down activity, very short burst of cleaning, repeat.

-To be honest, if he does have some energy (sounds like he does) then he needs to give what he does have to his family and his social life gets what's left. Of course he can socialise but he really needs to priorities his family if he has limited scope to do stuff.

None of this is meant to mean that people with disabilities should 'just get on with it'. I also understand that his condition probably affects him differently and apologise if my advice is totally irrelevant. But he sounds similar to me in that he has some ability to do things around the house/care for his child. In that case, it is his responsibility to commit to finding manageable ways of doing things.

You need to hire help in tbh.

His attitude stinks regarding his comments about being a single mum but he also does have a chronic illness that can worsen if he doesn't rest and with him working full time I'm not sure when he is meant to rest if not after work. If he can't rest he will likely have a "crash" which could eventually get so bad he then can't work and you will be even more of a mess.

Unfortunately you both decided to have a baby despite him having this condition (I have ME and tbh there's no way I would consider having a baby with this condition) and he can't just magic himself without ME /CFS now.

You both need to look at your situation and work out the best solution but that solution is not him not being in bed.

You need to consider things like him reducing hours at work to rest more to he able to help you.
Or hiring in help either childcare help or help around the house cleaning etc.

The "women always seem to manage" comments are nonsense. Me/CFs does not work like that. There is absolutely zero change that i, a women, would manage.

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.

Also all the football match stuff. He isn't going to a football match after work. His ability to attend a football match at the weekend has no barring on his ability to help with a baby after he has finished a full day of work. Me/CFs does not work like that.

Arguably though he shouldn't be going to the football and he should be staying with you at home instead to help with the baby at a time is is able to.
But all the "picking and choosing when he's disabled" stuff and "why can't he sleep at night when he has to sleep in the day" all show a big lack of understanding about how ME actually works.

Sounds like maybe he needs to think about reducing working hours until your child is school age?

Ridiculous to say someone can't do the dishes or laundry when he is able to work and go out to football matches. He may not be able to do those things after a day at work which is totally understandable, but to say someone is totally incapable of doing it is ridiculous and people with this condition will all be different anyway.

@Universalsnail

The "women always seem to manage" comments are nonsense. Me/CFs does not work like that. There is absolutely zero change that i, a women, would manage.

This is so true.

I can’t push though the fatigue- if I try I start to shake, feel faint and vomit. The pain is horrendous. I WILL fall asleep- I’ve fallen asleep in museums, on nights out, at school, at friends houses, in the European court of human rights, at a Metallica gig, during sex, in the bath, in the car when I park up, at the opera and all sorts of other places.

The issue here is that he is choosing to use what little energy he has on his own jollies instead of on his family.

As someone else who has long term conditions which cause fatigue, I agree with all of this. I wouldn’t expect him to push through fatigue, but I would expect him to have a good think about his life and priorities and where he expends the energy he does have. At the moment it seems like you and the baby are at the bottom of his priority list, when you should be at the top.

Drop me a dm if interested but essentially my Mum has had this all her life and her life looked pretty much like yours for 20 years as I was growing up. We went through everything on the NHS growing up and she was just written off with CFS.

We found out after that time that she had a huge overgrowth of Candida in her stomach and after about 3 years of lots of tests and huge diet changes/lifestyle changes, she now works 4 days a week teaching.

At her worst I had to carry her to the toilet, or she’d collapse, and support her head to eat.

If interested I can share more on DM.

I have CFS, started when my eldest DC was 2 and it is so so hard. My husband really did have to pick up most of the physical work around our house. But what strikes me here is your husband’s absolute dismissiveness- “well single mums manage”. I think even a little bit of emotional support and acknowledging how hard it is for you would go a long way tbh.

Aside from that, he does need to be looking at ways he can help. If he’s managing to go to a football match on the weekend, I reckon he could be sat folding some washing or cutting up some veg for dinner. It’s all about pacing yourself and adapting tasks so they require less energy- put a load of washing on, sit down and rest. Put it in the dryer, sit down and rest. Fold it, rest. Likewise, sit at the table, chop some veg then have a rest. THEN put stuff in the slow cooker. If he’s looking after baby for a couple of hours while you nap then he needs to gather all the changing stuff, pre-made bottle etc and have it next to him on the sofa so he doesn’t need to be up and down.

It’s the attitude that stinks here, and I don’t think the poster who said “well women with these conditions seem to manage” had it that far wrong. No, you can’t push through a crash. But I bet every single woman here who has CFS or a similar condition tried to find at least something they could do, even if it was tiny, and felt (irrationally) guilty if they couldn’t. Just washing your hands of all responsibility seems to be something only men get to do tbh.

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.

If he can work full time could he shift his start time back at all? He could apply under reasonable adjustment at work. If he started earlier he would finish earlier then his sleep time could be slightly shorter and he would be awake when you are.

Single parents "manage" because they have no choice and unlike those in relationships don't feel let down on a daily basis by the person who is supposed to parent their child.

I have chronic fatigue from another illness so not CF but I have had to adapt my schedule to parent my children. I actually stopped working because that was better for my own health and worked in our favour childcare wise. Your Dh cannot use his disability to shirk his responsibility as a husband and father.

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

I agree somewhat, but equally he is a grown man who chose to have a child, and as such, should have considered how he could meet his work and family obligations, like all parents need to do. And fun for both parents then gets slotted in.

You SHOULD have an issue if he does that instead of being a parent! What's he suggesting to improve things? Or is it just this is the way it is, deal with it? Because, if that's the case, you probably would be better off being a single parent.

I think that's my point about them both being very niaeve about having a baby in their circumstances and now they need to work together to ensure both of them find a balance where they both get to work (if wanted or needed), they both do a share of parenting and they both get to enjoy a personal interest. Expecting either parent her or him to go with out support, the rest they need, or the ability to have leisure time is just not going to work for the family.

Personally I think the first thing they need to is consider whether it's possible somehow for him to go part time. Working full time with ME and a young child and still expecting to have any sense of quality of life for either mum or dad just I can't see working long term at all. This is resentment, relationship collapse, and depression waiting to happen. He need to apply for PIP if he hasn't already.

'Plenty of single mums manage'
That's a horrid mean thing to say. Amd we may manage but I doesn't mean it's not hard and lonely and stressful. Hes also admitting on his part that you're almost living like a single mum as he can't/wont help and you don't actually have any company from him as he's asleep. He should be trying to think of ways that your load can be lightened or that your schedules can match - he could cuddle baby while he's in bed for example surely. He can't help his medical
Illness but he can help his attitude. I would consider relationship therapy to talk through all this.

Well done you are a super mum I hope you can get breaks and rests sometimes

Yes he has a disability but he also decided to have a child. Yes he may need more help due to his disability but he needs to organise his life in a way that he is a supportive husband and present father. I agree that this will not work long term unless something changes. In a few months time your DC won't see him at all mon-fri as he will get home from work, nap then once he wakes up baby will be in bed.

He says I’m being unreasonable because I knew he had a chronic health condition before planning a baby with him.

I agree 💁🏽‍♀️

They don't. Not all of them anyway. I'm in a support group for disabled women and many post about their struggling to cope, breakdowns and failure to provide adequate care for their children.