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’d be entitled to carer’s allowance if you were not working:
https://www.gov.uk/carers-allowance

It’s a pittance but better than nothing. It also comes with NI credits so your state pension would still accrue.

Thank you, I’ve looked at this too and worst comes to worst I would claim this if she got her DLA approved.

I don’t have any advice sadly, you’re stuck between a rock and a hard place. I’ve lost a couple of jobs because my kids were ill and I kept taking time off. Strangely, it was easier when I studied because if I missed a lecture or seminar I could just catch up, you don't have that option with work. Take all the support you can get. Sorry I couldn’t be more useful, I hope someone comes with some good advice.

Thanks, I’ve also wondered about whether studying goes give flexibility. As it’s a nursing course though I just worry about missing placements etc and then getting kicked off the course or being forced to take a year out and then having no income.

Apply for dla now, it takes a lot of time to be processed and you need to include as much information as possible, but it means you'll be able to claim carers allowance, it's something at least.

Also I think you and your husband will need to split the stay, you each take time off at different times meaning he can't take leave to support you (and you are both off) to minimise time off.

Are you sure you wouldn’t be entitled to universal credit disabled element top up? The threshold is much higher than just for the usual UC. Many people think they won’t be entitled to it but they are. You’d have to be in receipt of dla at medium or high rate first though. This is separate from the carers element on UC too, which you can also claim. (It’s not the same thing as carers allowance, it’s very important to claim this if you can as it also goes towards your state pension stamp). Turn2us do a benefit calculator you can use anonymously and hypothetically to check what you might get.

Can a relative move closer to you or you to them to help with hospital stays?

Can you work from the hospital? You say your job is admin, well why can’t you be bedside with a laptop? (I know this sounds heartless but my aunt did this for years with my uncle who was often hospitalised due to heart issues from having polio as a child)

once his leave renews then we would look at how we make this work. I think if we lived and worked close to the hospital we’d be able to manage it better but as we live/work over an hour away it means one of us could be left for days with no help, no way of getting any food never mind leaving our daughter screaming for 5 mins while we microwave something or go for a wee. I’ve gone nearly a week without a shower before because I’ve just not had anyone to help me. Nurses do what they can but they’re too busy to watch my daughter for 10 mins while I go shower etc.

Oh gosh how hard for you.

Obviously it would be ideal if you weren't working at all. You must be exhausted with worry.

But perhaps work 3 days a week flexibly, so if you take time off you could make it up the following weeks.

My daughter is only little, she won’t just sit in her cot and watch YouTube, she finds the whole thing very traumatising and upsetting so I have to spend most of my time holding her. I also don’t get a lot of sleep on the ward so while I could possibly manage a couple of emails here and there, I’m certainly not functional.

Is there a charity for your DD’s illness or a disability charity that might be able to at least send round a volunteer for respite so you can shower?

Maybe when she is older then. I am hoping her condition or the treatment improves in the future, xx

Thank you, that’s really helpful and I’ll have a look to see what the case may be if I did end up out of work.

Could you get au pair or nanny who would stay with her when she ill?

Thank you, I think when she’s maybe 4/5 some admin work while she’s in bed won’t be an issue at all but it’s just not feasible when she’s so young x

You won’t be able to do nursing yet, it’s very, very hard with young children even when they are well. I don’t want to be negative but I think you have to push that plan back for now. I work in a uni that offers nursing and placements are really tough on families. They are really inflexible I’m sorry to say.

Hopefully not forever but I’d forget that plan for now. A different uni degree would be achievable though (something low contact and mostly PC based) but obviously if you want to nurse it doesn’t help. Don’t draw down a student loan though in these circumstances, it’s a bad idea.

Work wise, one of you is probably going to have to stop working. Friends of mine with a disabled child with health needs moved things so she worked part time evenings and weekends, and they basically tag team the hospital visits and childcare. They barely see each other but that’s how they survive.

It’s a grim prospect, I’m sorry.

Not sure that’s affordable and also she finds hospital very distressing (cries when she sees a nurse or doctor at this point) so leaving her with someone unfamiliar feels cruel when she just wants mum.

Thank you I appreciate a bit of a realistic view to this. I’d be happy to do that sort of work if that’s what we needed to do.

Is there a possibility of them training you to do her IV fluids at home?

What’s your sick pay situation like? If you get full pay for any period of time, why not go off long term sick? Be honest with your employer and say you simply cannot juggle this any more.

Then, perhaps go on to 1/2 pay the resign when the sick pay runs out? I’m assuming your DH is the higher earner here.

I would absolutely shelve the nursing plans - not forever, but for now. You cannot miss placement and the course is gruelling. I am not exaggerating. We called it the divorce course when I trained.

Nothing useful to say. I just wanted to give sympathy and say I'm sorry you're going through this.

How horrible to have such a tiny baby ill so often anyway, and then to have to worry about your job too 💐

Gosh OP this sounds so tough- so sorry you and your little one are going through this.
I'm not sure whether your daughter's condition would allow this- not sure what she may be hooked up to - but could you bring a high chair into the showerroom with you so she could sit in it with some toys and you have a very quick wash? Having done some hospital stays with my son when he was between 1 and 2 I know how hard it is to find a minute to even go to the loo as staff are so busy and little ones are often clingy when poorly.

I don't have any advice, but wanted to say how brilliant you are.

Having had a child who was out of school (for very different reasons) I understand the pressure, and I did lose my job to it in the end, but thankfully found one with a much nicer manager.

I empathise completely ❤️

Been in a very similar situation, OP. In honesty, I just didn't work. My work was to care for my child who needed me. Maybe if I had family around who were available to help out it could have been different, but I didn't. Unless you can pay for someone to take your place with your DD, it's a hard place to be.

I had to quit my job to be at home with the kids. Both have additional support needs. The amount of time I had to have off because ds was off nursery with a bug or he had a hospital appointment I was off work more than I was in.