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.

Its possible but she needs close monitoring when she gets like this and she’s very up and down, twice now in the last few days we’ve thought she was improving and then she’s declined again only hours later. Hospital is the right environment for her now but in the future this may be possible.

We get dla (middle rate plus mobility) and I get carers. It's £405 a month for the dla and £81 per week for carers. I can earn roughly up to £150 a week on top of that and still get carers.

I didn't work when ds was 1-5 years old due to ds not being able to access childcare because of his health needs. I now work part time in school hours. I do 12 hours over Thursday/Friday/Saturday .

Maybe claiming the benefits and working part time might be an option for you? If you work a couple days a week at least it's less to cover if your dd goes in hospital. Particularly if one day was at the weekend when presumably your dh is around.

With dla, carers and my wage it's roughly £1500 income. Tax free and stamp paid.

Pay situation is okay I have about 2 months of full pay left (I’ve not come back after a month off following an RTA - my luck is shocking atm!) and then I believe 4 months half pay. I don’t really want to do this as it feels shitty but not sure what other options I have in the short term.

The shower is in one of two parents toilets on the ward and it’s tiny, wouldn’t be able to fit a high chair in.

Lots of parents have to leave their child in hospital to go to work. It’s that or lose their jobs and homes.

Thanks, this is sort of what I’d aim to do being able to have some income just to top us up and keep things going.

No they don't, the hospital requires a parent to care for children in hospital day and night. They provide medical care only.

If my daughter was older then yes we would look at this but reality is she’d be left screaming for 9 hours a day on a busy ward where no one has any time to comfort her. They barely have time to meet her medical needs. She was left without IV fluids for nearly 12 hours due to short staffedness and she is high risk for dehydration. I do understand where you’re coming from but I don’t think would work in our case.

Are these parents who have other family members who can come and sit with their child? Some of us don't have that and have to quit jobs.

Is your job the sort of role where you could apply to drop to 3 days a week?

Although you would still have all of the same issues around needing to take time off when she is poorly, it would feel a lot more manageable on 3 days a week.

Your partner could more easily cover a work week for you (he’d only need 3 days holiday) and it’s much easier to show willing by making up some of the time the following week if you’re on 3 days.

If you are going to be in hospital regularly I also think that however hard it is you need to try and find some sort of system where one of you can be in hospital whilst the other works to reduce how much time off is required to just one parent at a time.

At a point when you aren’t both knackered and stressed can you sit down and work out a system for doing that? Eg another system like a family member coming up to give you a break each day; anything you can buy to make sleeping easier; can a bag be packed in advance; is there a way your partner can come up after work and return in time for work the next day; can you make an advance plan for meals etc.

Sorry you are having such an awful time. Is it worth getting a "prognosis" from the medical team as follows:

• As she grows and the amount of gut she has grows with her, will this problem improve a bit?

• As she grows and leaves her early years, will she get fewer infectious illnesses that trigger these kind of episodes? Because infectious illness is both very much more common and in general more symptomatic (because of the sort of "guns blazing" approach of the immature immune system) in children under age 3-4 years, in my experience.

If applicable, I'm just thinking "an end in sight" to these frequent, exhausting admissions could be really beneficial to you psychologically. Doctors hate to make promises / commit to any kind of "crystal ball" prediction but perhaps you can tease out a general sense of whether things might or are likely to improve / become easier.

Practically, if frequent hospital admissions are likely to be longstanding into primary school years, in your position I would aim to move home (and jobs) closer to the specialist hospital if at all possible. You would want to resettle before needing to apply for her reception place. If the admissions are likely to settle down after a turbulent 3 or so years, leaving the workplace or downgrading your hours or finding a very flexible job to cover this period is the other option.

Reading your post I sense a lot of worry / guilt / stress about your employer and your absences. This is because you are obviously a really conscientious person but though you can't just put worry about getting fired to the side, I think that if you can, you should put the guilt to the side. This situation is not your fault and in a fair society, we should share the burden of children being poorly. That includes inconvenienced managers. You are taking on enough, don't take on your manager's job as well. It is for them to work out how to manage your unpredictable absences, not you. If that is stressful for them, don't make their stress your problem.

I'm not an employment expert but it may be that they can't legally fire you even if they want to (perhaps seek some free advice about this as that could be another weight off your mind?). Certainly don't make decisions which are bad for your family out of any sense of obligation to your job.

In honesty OP, my reality of 'managing my life' around a child's illness is:
-No employment, or very little flexible work remotely
-All social plans are subject to change or cancellation at any time
-All plans for anything are subject to change or cancellation any time
-Losing friends who can't handle my unreliability, which isn't my fault but it is what it is

Thank you for this. Yeah we have agreed that after we get home from this we will have a good talk about how we manage. Until his leave renews he’s out for the count in terms of shared care while she’s admitted but he is willing and does help a lot. We deffo need to be more organised.

i could possibly drop to 3 days a week in my current role, yes so that’s something I’ll discuss with work too.

I have 2 children who have been in and out of hospital all the time when they were little. I only saw one unaccompanied child in years of being there a lot and he was a LAC.

OP do not drop any hours just yet. It’s just less sick pay you will get further down the line. You need to prioritise your family not your employer.

When you leave this job, which sounds inevitable TBH, they will replace you in just a few days. So take the sick leave. Yes, you’ll initially feel crappy about it, but it’s why we have these protections. This is exactly what they are for. It’s not forever. It’s just for now.

Respectfully, you have no idea what the fuck you're talking about and are just being antagonistic. Goodbye.

This isnt true. Unfortunately there are no staff to parent children in hospital and if the child is in need of normal parenting (eg they are conscious and wouldn't under ordinary circumstances be able to be left home alone) then their parents are expected to remain with them 24/7 with the same kind of exceptions you'd expect in the home environment (eg having a shower). Obviously this is enormously difficult for parents.

Thank you for this response. One of the key points we want to discuss with her consultant is will she “grow out” of it and how we manage work with all this in mind. Her consultant is brilliant he’s very understanding and genuinely seems to care about us as a family.

I’m so sorry. It’s absolutely rotten, I wouldn’t wish it on any parent. A lot of joy gets taken away when things get bad x

OP - what type of childcare does she go to now? Nursery is a breeding ground for illnesses as there's so many kids, even healthy kids get very sick.

I have a childminder who only has 1-3 kids a day. Could you take a look into trying to find someone like that? Could cut down on the sickness.

A nanny would work as your daughter would learn to be familiar with the nanny like she is with you, then the nanny could be there for hospital stays - but obviously that's a pricey option so understand if you can't afford it. The key thing is whether it's pricier than losing your job would be

Gosh, what a hard situation. Sending strength and the solidarity of motherhood.

My thoughts are:

Yes to going part-time - it gives more flexibility and you would probably lose less money than you think due to the way the tax works.

If not, what about medical transcription? Or some other kind of flexible work that can be picked up and dropped as needed.

Is there a charity for parents at your hospital? I know that Ronald McDonald houses are at some hospitals. Now is the time to say ‘Yes’ to help and support.

This would not work. I've had a child with a life threatening illness and they absolutely need someone with them that adores them and who they adore. It's rough on parents. Medical trauma is real, even for little kids, but having your mum with you is having your world with you and nothing is better than that. Op, in our area there is a charity that helps people fill in DLA forms...they are brilliant at it...there may be something like that in your area. Parents on the ward may be able to point you in the right direction or ask the ward sister. You are doing your absolute best and it's rough. I wish I could sit with you and make you a cuppa

My MIL looks after her, we pulled her out of nursery first time she got sick. We can’t protect her from every bug I know and nor should we but nursery seemed too risky.

Thank you for this lovely response. Honestly a cuppa and someone to chat to would mean the world. MIL has been here today and has been so supportive. So lucky to have her but she has work commitments too so she can only do so much.