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.

What an awful position to be in, I can only imagine it's adding a whole new layer of stress on to what is already an incredibly stressful situation dealing with a frequently poorly child.

My daughter was born with some health problems which meant a lot of hospital stays in the first few years of her life and beyond (although less frequent after age 5) thankfully I was a SAHM at the time so it was easier for me to stay with her.

I would apply for DLA as soon as you can, make sure you get as much help and advice when filling the form in as they seem to be designed to catch you out. You should also get carers allowance and possibly the carers element of UC. It would be unfortunate to have to give up your job but I don't think you have any real choice at this point.

I would agree that a nursing degree is pretty much out of the question at the moment. It’s not like some other courses, where missed lectures can easily be caught up on, they monitor absences very closely. Would part time work be possible? I’d also suggest you and dh taking it in turns to have time off work. It’s probably unrealistic to both be off at the same time.

Yes going forward we’d find a way so that he’s not off at the same time as me or minimise the overlap, he has no leave left now for a couple of months. She had two planned stays and he took time off for those surgeries, had we known she’d be in so much we’d have been smarter with how he used his leave!

I've been in hospital a lot over the years on kids wards and I don't think I've ever seen a parent leave their 1 year old alone so they could go to work. I've rarely even seen older children being left.

There’s always the unpaid leave to fall back on too (I know not ideal but at least you have a job to go back to). You are entitled to Up to 4 weeks per child per year unpaid (per parent).

OP is her other parent/Dad also taking the time off work? Can you not split it?

OP you mentioned your MIL looks after your daughter - could you split the hospital stays three ways: you, MIL and your DP? Is that workable?

In your position I'd do that and also request to go part-time, but I don't think I'd leave work completely.

Have said a few times yes he does, however he used a lot of leave on hospital stays while I was on mat leave which in hindsight wasn’t sensible but he wanted to be supportive and give me opportunities to have breaks and go home/stay in a hotel. He’s now out of leave for a few months, but this is something we’ve already discussed.

@Throwingitallaway24
Maybe I could get carers for you & apply for PIP for the beautiful girl?!💐

Yes MIL helping a bit at the moment and would be happy to again when she can. We will try and figure a plan out for next time but yes would be much easier to work around if I was part time.

Not sure what you mean? I already plan to complete a DLA form for her and assuming it is approved then apply for carers allowance.

When my little one started nursery he was off sick at least every six weeks with a cold which affected his breathing and he would be admitted into hospital. Each time I would need at least a week off work.

I didn't work in the hospital but when I got home I did my best to go above and beyond and basically wore myself into the ground. I made myself self more prone to illness and mentally wasn't in a great place.

I had been with my company for 16 years and luckily they was very patient with me (could tell I had annoyed them though). It lasted 2.5 years and now it doesn't happen anymore.

I would have an upfront conversation with work and explain the situation. That you are going to try and do things different when your husbands holiday is renewed but you are still going to have instances when you can't come in. Kids come first.

Surely you're out of leave too?

Hi OP does she have hirschsprungs by any chance? There are facebook support groups including advice for applying for DLA successfully with lots of people in similar situations, year 1 was definitely the hardest my son has now had his stoma reversed but I totally understand how difficult it is to juggle and manage the ins and outs of being in hospital and working full time. Thankfully I have a supportive employer and had family to help but it was the toughest period of my life, without that I'd have gone down the DLA/carer route but it does get easier x

Our leave renews at different times of h the year mine restarted a few weeks ago.

Why can’t your husband also take some sick leave and/or unpaid parental leave- why is it only you looking at doing that?

I’m nope, apply for carers allowance you!
💐x

Yes! She does!! I am on all the groups on fb or at least I think I am! She has long segment possibly total colonic so our fear is even when she has the reversal she will still need lots of hospital support, just in different ways. Hope your little one is doing well x

His team are on potential redundancy risk so sick leave needs to be avoided ideally. Parental leave yes he probably could take some but it just won’t cover it for what we are looking at needing to juggle while our daughter is so young and more vulnerable.

Thanks. I think the point I was making is that there isn't really such a thing as 'managing your life' when you have this sort of thing going on. Life is too unpredictable to manage it in any orderly way. Unless you have family to step in, sometimes the easiest way is to accept the situation for now and step back from employment.

This is really tough ❤️ some suggestions though probably well meaning just aren’t possible. I don’t think you’d find an au pair willing to look after a sick child in hospital and rightly so. The only way to keep your job (if you want to) is to alternate time off with your husband. Otherwise go off sick, quit your job and claim DLA, carers etc. if you can afford this.

Just wanted to say you aren't alone. Having a kid with complex medical needs is really tough. My son is now 3 and we have had over 50 hospital admissions in his short life. He had a port a cath fitted at 18 months old which has been an absolute game changer as means we can administer Ivs at home providing he's not needing additional medical intervention that we can't provide for him. I had to give up my career and took 12 months out of work, which was really rough. We had to sell our house and relocate closer to a more specialist children's hospital and to family, and we rented for just under a year, but have now managed to get back on the property ladder. I also found work that is evenings and weekends and whilst it pays no where near what i was on before, it gives me time to just be me and not mum/ carer. I also get carers allowance and my child gets high rate disability allowance.

In the beginning of our journey, I found it so hard to adapt to our new normal and had lots of resent towards my husband as life for him didn't change as drastically as he had to keep working as he earned more than me, so spent much less time in hospital. I can now say that after some counselling from our locals carer centre, I'm in a much better frame of mind. Life isn't the way we ever imagined it, but my kids are happy, loved, we have a roof over our heads and food on the table. We don't know what the future will look like, all we know that this is life long and we just need to take each step as it comes, and trust that even when we have to take a different path than we wanted, it'll lead us to where we need to be.

The one thing I would say with work, is you are often better to be off for a longer period of time, than to keep being in and out as it triggers more absences and is harder for employers to staff and manage. I learnt that the hard way after hitting monitoring triggers as I was trying to go in as much as often.

Sending lots of good wishes your way, you are right in the depths of it right now, so give yourself some grace and don't be afraid to admit to people you are struggling and need support.

Sounds v tough. Are you and DH splitting the time in hospital. If an employee had a partner I would expect both to be taking time off work.

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.

@Throwingitallaway24 look into the requirements for claiming New Style JSA, as that doesn't look at your income/savings, but instead looks at how much National Insurance you've paid over the last couple of financial years. As you've been on maternity leave not that long ago, it may be more tricky to meet the threshold, but it's worth a try. I think it only lasts for 6months, and isn't a huge amount of money, but will give you a bit more breathing space if you're eligible.

Hospital stays with a little one are so difficult. You and partner really need to be splitting them maybe you do this stay then partner does next it can't always be you taking time off and unfortunatelyyou will both probably have to use your annual leave where possible. Whoever is still at work should come after work to allow other parent a break its not ideal but every1 is the same muddling through with hospital stays.
Look into dependants and parental leave also although these are unpaid it may protect you at work to get through a little longer.
Also re DLA request the forms ASAP it took me almost 6 months for a decision but it gets backdated to the day you request the forms. I think you have 4 or 6 weeks from requesting the forms to submit the completed form and submit evidence. Hope your little ones health improves in future xx