To have no idea how I manage my life around my daughters illness

[Throwingitallaway24]

Feeling quite fragile as I’m back in hospital with my daughter for the sixth time since she was born last year so some kindness is appreciated.

My daughter has an ileostomy as a result of a bowel condition she was born with, and she’s in a position where if she gets unwell particularly with tummy bugs it’s straight to hospital to go onto fluids and we basically just have to wait until the bug goes away which is usually around 1-2 weeks. This was somewhat okay while i was on mat leave. However since returning to work six months ago, she’s been hospitalised twice with illness. I work full time admin and while work have been supportive in the main, this time I can sense a bit of an atmosphere in the messages I have received from work while I’ve been in hospital with my daughter. I’m not an idiot, I know I can’t just go off for two weeks at a time on no notice. But I can’t help it either. My daughter is only young, her dad has used all his annual leave up supporting us with the hospital stays and doing some overnights so I can get some sleep and a break. We have family who help as well. We don’t live local to the hospital that she has to be treated at so it costs us a fortune sometimes in hotels because I can’t make it home and back quickly. There are sometimes rooms available for us at the hospital but they’re in very short supply.

this is all so stressful and I’m fairly sure I’m going to be sacked eventually. I don’t even feel mentally well enough to return to work tbh as each hospital stay is so exhausting and stressful. My daughter’s situation isn’t likely to change anytime soon so we’re looking at probably around 3-4 emergency stays a year. We never know how quickly she’ll recover either so I can’t definitively say to work when I’ll be back. I have to speak to my managers manager again tomorrow morning and I feel sick.

I will be applying for DLA when we get out, but I wouldn’t be entitled to any other benefits if I lost my job as my partner earns too much and has savings but it’s not enough for us to live off of. I’ve no idea how I’m meant to manage this in future with my work/career. I have a place to begin studying paediatric nursing in January and I so want to retrain and study but I just don’t think I can make that work.

any advice or support would be super appreciated.

You have to give 21 days' notice to book parental leave so it's not really suitable to cover sickness unfortunately.

Thank you for sharing this and I’m so sorry you’ve all had it so hard. You’d think by now we’d be old hat at managing hospital but it still seems to catch up by surprise every time and I think now I feel out of control and I’m seeking to be pragmatic and problem solve for future. I don’t necessarily mind changing my job to something that better suits our needs as a family it’s just figuring out what the change is and making it happen.

I read the notice can be waived in some cases but I’d imagine that’s likely to be a “one off” situation than being able to do so regularly. Employers (rightly) do need as much notice as possible if you’re going to be off and I’m very understanding of that.

OP, no advice but lots and lots of sympathy.

@KidsDr Jusr curious but did you use AI to help write your response? No judgement!

Again to add - we have mismanaged previous hospital stays so my partner and I have used a lot of time overlapping when we probably shouldn’t have, all of this has caught us by surprise and we’re always just trying to get through the current crisis before planning the next one. My partner is of course happy to use leave to take over care in hospital whilst I work it just isn’t possible for us right now or the next few months until his new leave year kicks in.

My son was born was a high malformation impeforate anus and we were in hospital quite frequently. Is there a Ronald Mcdonald house attached to your hospital? They were a lifesaver for us. You should be able to get referral from your unit.

My son has complex needs and I naively restarted back at work after a years maternity leave, it lasted about 6 months before I handed my notice in, we were on our knees.... it's not just the surgeries and hospital visits for illness, it's the endless consultant appointments, physio OT, etc etc he's now 11, my lovely DH is/was the higher earner we talked it through and this is the best for our family. It's hard but we are both a lot better mentally.

We have the sick children’s trust house which we used when my daughter was in NICU but havent gotten in since. Would work well but my understanding is it’s really limited and they prioritise families where the child is staying for quite a while. My daughter could be coming home on Wednesday if she does well in the next two days or it could be another week? We just don’t know

Gosh it's such a hard diagnosis and the fear for the future is unreal. My son manages very well now with medication he didn't have total colonic but we're under the bowel management team rather than the surgeons so it's all a bit more flexible. He gets less sick since the stoma reversal. We haven't had to go back as in patient since. You wouldn't know what he'd been through but those first two years I couldn't see the wood for the trees and my son was similar and still has a total fear of anything medical and just had to be held. I hope you can look after yourself too I only realised in hindsight just how hard it had been, feel free to pm me if you ever need to talk x

Thank you and I am so happy to hear your son is doing well! Makes me feel hopeful. I am lucky that my job is a sort of one that if I did something else for a few years I’d easily get back into it so stepping away for a while is not the end of the world - just a lifestyle adjustment!

So are you using annual leave? I have had cases at work with staff member taking a lot of unplanned leave due to issues with children & found it frustrating their partner wasn’t picking up their share, ie their job was less important. If your employer is getting funny about it that might be part of it . DS’d dad and I split any unplanned leave straight down the middle.

Sorry OP, I haven’t read the full thread but just wanted to offer some solidarity. I’m currently reading my phone with painfully dry contacts in my eyes as I can’t put 7 month old DS down because he is so poorly currently. Has a long term
illness but also has some sort of virus at the moment.

Really hoping we manage to stay out of hospital this time - we are in every 4-6 weeks at the moment and DH and I are both self employed so losing around £1-1.5k in income per hospital stay as I usually look after 3 year old as well during day and work in evenings but DH looks after 3 year old while we’re in hospital and there is no way I can work as 7 month old needs constant comfort.

I’m so sorry you are going through this, it really is so tough seeing your child be unwell without the financial worries as well.

Sorry I have no advice to offer, I too have gone over a week without showering as it’s just not possible, caring for a young person on hospital can be really hard work! Just wanted to say you aren’t alone - sorry for the ramble.

@Elizo how did you know what her partner was or wasn’t doing with his annual leave? I’m not sure it’s relevant here really. The OP has made it clear that she was on Mat Leave for a lot of the last year and that her annual leave rolled over more recently than her partners. I would assume his rolls over in January and then they will be able to split it again.

I am still sorting out with my work how this time is taken. I was on mat leave when he used leave for other hospital stays and we should have thought about that at the time but we just didn’t. As I said anything in the future when he gets his new year of leave we will split more evenly.

Often the reality is one parent, the lower paid taking time out from working unfortunately. I couldn't work due to kids SN, it's really hard, I'm sorry your family and your precious little girl are going through this. You and DH need to sit down and work through the options, having something to work towards longer can help when you're in a very stressful situation.

When my youngest was 3 he was in hospital for a couple weeks and after the first 3 days he was happy to lay their and use a tablet, he couldn’t use one before that, he got proficient really qucikly. I'd look to introduce one when she's a little older, they can be gold distractions for sick kids, even just to watch. XH could work on his laptop when he was in with him, though not to the same standard, but one of you might be able to manage part time wfh around this.

Can you take unpaid leave from work for a while? Could you drop down to part time and make up missed hours when your DDs well? Could one or both of you find more flexible part time jobs? Obviously I don't know how flexible either of your jobs are. I'd write down all the options given here, even if they seem unworkable and discuss them with your DH. This can be a good way to problem solve and you may find when you're talking together that better options occur to you.

If there's going to be many years of this it might be better for you all to move nearer to the hospital. If you do consider doing this I'd move into the catchment of a school with good disability provision near the hospital. The back and forth alone can be exhausting and it would be easier for you both to continue working if you don't have that travel time, not to mention much cheaper without all that petrol and hotel bills.

So sorry to hear all you’re going through - I’ve no idea what we’d do if we had an older child! I really hope your youngest is in a better position soon x

Has anyone mentioned parental leave to you? It is something both you and your partner can each take up to 4 weeks unpaid per year. It might be worth looking at the rules. Yes its unpaid but if you get the DLA in place this should help a little with loss of wages and would allow you to keep your jobs whilst having an extra 8 weeks a year of cover for these things.

Unfortunately the area her hospital is in is really expensive, we can’t afford it on our full salaries really (unless we’re looking at pretty rough areas). Also it would move us further away from family and we desperately need our family support as they are our childcare as she doesn’t go to nursery to try and minimise her exposure to bugs.

Thanks I’m aware of parental leave but it usually has to be planned in advance.

Just saw parental leave has been mentioned, its worth discussing this with both workplaces as I believe the rules are different if you have a disabled child and allows for more flexibility.

Why is this all on you? Your DH washes his hands of doing anything more because he's used up his holiday, so you're expected to do it all? He needs to take time off too. Has he thought about going part time? Why is it on you to make all the sacrifices.

My DD had 2 long stays I hospital last year. It varied but for a while I sorted breakfast, her dad came mid morning until late afternoon and then I was there for dinner. I could get most of a days work done when her dad took over, and did some more by her bedside. Her dad worked early morning and evening to get his work done.

Haha no I did not!

I use this username for doctor-y related matters only, and I guess I feel a responsibility to represent myself carefully / professionally, to an extent. So maybe all that overthinking gives the posts an artificial feel! Either that or I'm subconsciously taking on the syntax of AI as I come across more of its content online...

I was wondering what you did with childcare for work. I'm glad you have family support where you live.

No they don't 😂 you're not allowed to do this. Have you been in a hospital lately?

This life is impossible, I've lived it. I only started working again when my child was 14. I can work from a laptop at night when they're asleep in the hospital bed or at home during the day when at school. Not sure what I'll do when they leave school as they will need 24 hour care forever. Will cross that bridge when we come to it I suppose.

It's tough OP. Really tough, especially until they leave primary school and the constant infections calm down.

You obviously didn't know where this was illness was going, so it's just learning. In hindsight you'd have done things differently.

The best thing for my mental health was accepting that the medical issue was going to manage my life for now, not the other way around. Otherwise it's like you're constantly fighting to be in control of something that you can't control. That's exhausting.