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.

Thank you.

I know it should but it's never that black or white, and what is seen as reasonable time off for emergencies obviously depends on your employer, the size of the business and how it impacts others ability to perform.

Employers also don't care who the higher earner is, but they do ask why the other parent isn't doing their fair share of time off for emergencies to reduce impact to their business and their leniency stops. They expect you to have a village that just isn't there.

It had sadly been my experience with multiple businesses and multiple union involvements, more stress than one person can cope with and busier than ever with meeting after meeting in a time in your life where you actually need a clear calendar. I am too disabled to work now anyway, but I hope OPs employer is much more understanding and able to accomodate.

I just wish there were more ironclad laws about what employers were and were not allowed to do during time off for disabled dependents, especially if it's likely to cause more stress and ultimately lead to quitting when it wouldn't in a stress free environment.