Young child when other parent has disability

[CoffeePlse]

DH has a combination of physical health condition (including chronic pain and low energy) and poor mental health. Physical health has declined significantly over the last few years. He tries hard to be present but it's very changeable and he often crashes at the weekend after working during the week. DD is 5 and becoming more aware and disappointed/frustrated when we have to go out without him or change plans. I'm also struggling tbh. Really trying to be understanding and pick up as much as possible, but without sounding awful, I didn't expect this to happen and I'm exhausted and sad. Anyone else in this boat? Any helpful resources you can recommend?

I'm sorry you're going through this. I don't know if it would work for your family, but we typically divide and conquer at the weekends anyway. So we might do one activity as a family each weekend, but the rest of the time one of us will take the kids out and the other person has some downtime, and then we swap. Would that work? So he gets (and you get) dedicated time off and your child knows it's daddy's or mummy's activity?

This would be great, but he's so variable he can't commit until the day. Then this morning for example DD got excited about going to a zoo with Daddy (or both of us) but it got to 11.30 and he still wasn't up so I just had to take her myself otherwise there wouldn't be enough time to enjoy it. I'm thinking about scheduling something fun on Saturday mornings that I can take her to, then we can regroup in the afternoons if he's able. I'm a planner so this drives me mad!

That sounds sensible, because otherwise I think it's unavoidable that the resentment will eat away at you. If he's typically better in the afternoon then the expectation needs to be that he takes her out in the afternoon (and you do something fun in the morning) or if he's not up to going out then he does at least need to supervise her while you go for a walk/have a coffee/cinema or whatever.

Is there any flex in finances that would allow him to work 4 days with Friday as a recovery/rest day so he has more energy at the weekend? (Assuming he works full time).

When DD was little, DH was pretty unwell, on a bad day he couldn't walk more than 20m (metres, not miles), so couldn't go out with DD. We didn't plan for him to do anything active with us; if he could join us, that was great, but there was no expectation (and DD knew he probably wouldn't join in). Setting the expectation that he wouldn't come definitely helped.

Thankfully he's now much better.

That's difficult if he doesn't know till the day what he can cope with. How about not telling your little one in advance, but waiting till he knows he can, then announcing an outing on the day?

I really appreciate your reply thank you.

This is difficult, my DH had a similar condition but he was much older. Is there a support group for relatives? FB group maybe? Or a website for his condition? Sometimes you can get appropriate advice from people in a similar boat. It is hard, but there are ways of working around things, planning etc so that your DD doesn't miss out more than necessary and her dad plays an active role. One thing I would say is that he needs to maintain activity so perhaps physio might be appropriate?

Can he focus more on at home activities? It was short term so not totally the same but I suffered so badly during my second pregnancy with a variety of things (awful sickness, unbelievable fatigue, dizziness, pain, mental health issues) and I barely left the house. DH would take DD1 out at the weekend both days, but in the afternoon he’d get a break and I’d do crafty stuff, jigsaws, board games, some baking. Low energy stuff that meant I didn’t have to leave the house or even really stand up, but that DD loved.

I'm now in my 50's but my dad became physically disabled when I was 3. We just learnt to accept that dad wasn't able to 'do' the same things as mum did. My mum however harboured massive resentment her whole life because he wasn't sharing the parenting or indeed the financial burdens (obviously back then parenting roles were more defined) he went from working full time to not being able to do much at all. He died 2 weeks ago age 88 and it's been interesting the perspectives of my siblings. You need to sit down and work out how he can contribute with parenting your dd in the times he's able to do so and what you can afford to do so that you have some respite too.

I'm an ill parent (although single) mine are teenagers now, would a wheelchair help? Sometimes that means the difference between me doing something and not. You could try hiring one at first if your not sure.
Other ideas - dont tell dc so that they dont get disappointed, find out if you can get any support/advice from young carers association in your area (school refered my dc). My dc had some books when young explaining my illness to them this may help (or even books generally on illness/how the body works). Changing mindset has also helped me (but that's hard and took many years), getting professional support for yourself too may help.
Is dh physically making himself worse by working has he requested adaptions at work, applied for PIP if able to maybe reduce hours. I am nolonger able to work but pushed myself and made my self worse by working when I shouldn't have done 'because society expexts me to'. I now get an ill health pension.
Basically you need to look at your whole life and see where you can make adaptions so that you dont burn out, what can you do differently, what dont you need to do, what can you accept you do without dh (so hes more likely to beable to join in on the important things).
Things like supermarket delivery and repeated menu plans. Bulk buying and batch cooking to reduce your workload. Calendar reminders for everything so you can reduce the mental load and not forget anything too.
Its never going to be the life you expected but hopefully you can all get some good times together and DD will be accepting of this. My youngest 2 dont remember me ever being well whilst this is sad its been easier in the long term than for eldest who can remember me riding a bike, going on zip wires or swimming.

Yeah I can feel the resentment growing. Partly because I see him putting his all into work (for little financial reward) to the detriment of family time. However his work is hugely important to his self-worth and without it he'd be completely lost and isolated, so I can't push him to give it up. I totally agree with the suggestions made about planning etc but I'm finding it hard to get these things in place as I (ironically) have a high pressure full time job. Need to make myself take a week off and get organised!