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.

Sorry just seen its hirschsprung's.

Total colonic HD is a bastard of a condition. My kid didn't have that but he does have megacolon which is similar in many ways. My experience was that as he got older it was easier to manage. He had an ACE stoma/Malone stoma for many years but now has an ileostomy which makes his condition much easier to manage.

It does get easier for most of us but it can be such a ghastly time while you are still in the trenches.

OP, just wanted to send best wishes and also highlight that Unpaid Parental Leave can be taken in single days with disabled children. You’re right that it has to be lbooked in advance but you and your DH could use it for appointments and any holidays then use your annual leave allowance for unplanned hospital admissions. Might help a little.

Op I'm so sorry you are going through this.

My DD was born with a health condition that required alot of hospital stays in the first few years and ongoing management. That was 17 years ago and those first few years were so tough. For me personally an added stress was my job but I look back now and wish I had taken some of the advice you have been given.
Long term sick - do it and don't feel guilty. Use what you can to give you some breathing space while you get a plan together and apply for DLA and carers. Pay no mind to any judgement from work collagues if there is any. People have no idea what impact a child with a health condition has on a family unless they live it themselves. Unfortunately some people do not have the brain power or capacity for empathy but that's not your problem. You do what you need to do for you and your family. I went part time working for an agency for complete flexibility and applied for DLa and carers which helped alot. My husband and I made the decision for me to do it to do it because my job was more suitable to. For us It was easier just one of us making that sacrifice. I've been back full time for a while now and making career progress.
What you are going through is exhausting mentally and physically. Do what is right for you and your family. Good luck x

Welcome to the shitty club OP - I'm so sorry you've got to join it 💞.

My daughter has been unwell for coming up on 2 years and we've had more than our fair share of difficult situations.

When my daughter is unwell we have to use a mix of me, DH and family. We also have a 2 yo DS who needs sorting out too.

In reality you have to try and make sure one of you is working at any one point, but don't kick yourself for past decisions. Forgive yourself for what you didn't know before you learnt it OP.

I work 4 days a week and we've not been able to get DLA up to this point as my DD was undiagnosed. And yes you are meant to still be able to get it before diagnosis but there's something about being able to prove it's going to continue for x amount of time which we couldn't prove. Now we have a diagnosis we've reapplied and nearly 20 weeks later have been awarded £28 a week, we're waiting for the reasons behind the decision (I cannot begin to fathom their decision). So don't count your chickens before they've hatched on the DLA front I'm afraid.

If you can afford it working part time could be your saviour, especially if its work from home as little one will become easier to entertain. If it's something with lots of meetings etc this would be difficult but if its jobs you can work on on your own schedule that would be great.

My work isn't flexible like that (teacher) but DH is self employed so has more flexibility (though earns nothing). I move planned admissions into school holidays as much as possible and then we take it in turns.

What a difficult situation. Definitely have another look at UC, to check if you qualify. Otherwise I think DLA and carers allowance plus working around your husband’s hours is the only option if you do get dismissed. Not sure if you can reduce your outgoing’s so you can manage on one salary? A uni course might work, but its pretty tough and meeting essay deadlines would be impossible when your DD is unwell. I’d avoid nursing as the placements are essential and you wouldn’t be able to complete them. Might be worth looking at something else, but would be tough with the hospital admissions.

Splitting into a second comment!

You mention how hard it is in the hospital and I feel for you there, plus there is a huge difference between hospitals.

On this subject I do have concrete advice!

Most specialist hospitals have a play team - they are an invaluable resource so touch base with them ASAP if you haven't already. Most are happy to sit with a child while you go to the loo/shower, sometimes this can be adhoc and sometimes it's something you need to book for a longer session (like to run to the shop).

Can little one be put into a buggy (eg can they be moved from the bed?) As this way you can go down to the canteen or hospital shop (sometimes canteen food is subsidised for parents!) Also if LO is breastfeeding you may get hospital meals.

If LO cannot be moved and there is little option for someone to sit in with them then you need a food stash. Porridge pots, cup noodles/pastas are all cupboard staples - you only need to run to the parents room to put hot water on. Prioritise nutrition as much as possible. Be assertive OP (but still nice!) "I'm here on my own and can't leave LO alone, I'm starving and have to go to the parents room to make some food. Can someone be available to sit in with x within the next hour". If you're seeing different nurses all day they are unlikely to have realised you're there alone. You are a human being, you need to eat, drink and use the loo - that's not an inconvenience or a weakness, it's an irrefutable fact. Our specialist hospital will let you bring in ready meals and the staff will heat them up and bring them to you (parents aren't allowed in the kitchen). But you only know this by asking.

For showers there is often a children's bathroom on the ward with a bathtub in it - these are generally much bigger and can accommodate a highchair/buggy. These are often empty in the early mornings/evenings. The ward should also have towels you can use.

If this isn't feasible (and sometimes it's not) then I take multiple sandwich bags, flannels and bar soap. Pull the curtains round, wet the flannel and have a refreshing flannel wash, put wet flannels in sandwich bags. And use good, cream stick deodorant and dry shampoo - aveda do a powder that you just shake on so you're not spraying it into the air around the children. But my daughter is respiratory so ymmv!

Finally many of the specialist hospitals have a hospital charity, either for the whole hospital or just the children's ward. Contact them and they're very very likely to be able to offer some support.

My last bit of advice is to try and realise that this is now part of your life, but I promise it isn't all of your life. We have found joy, fun and love over the last 2 years that we would never have experienced otherwise. It probably seems impossible today but good things will come too xx

Could you look into Virtual Assistant roles? It might give you more flexibility work wise, and keeping your daughter out of childcare for now should reduce the number of times she gets ill?

Also, I know it is horrible to leave her to cry, but if you need to go to the loo/get food/shower, you need to just do it. Crying for a few minutes really isn’t the end of the world.

2 of the more unrealistic suggestions I have every heard!

I'm sorry you're going through this. It's probably the last thing on your mind, but please consider the legal benefits of getting married. If you're about to become a full time carer with a very small income, it may be in your interest to marry your partner first. It doesn't need to be a big or expensive event. I hope your daughter is better soon.

She has made it abundantly clear to the simplest mind that he can't leave work right now.
She has explained more than she needed to that he has done all he can.
Your useless snide comments aren't helping a vulnerable woman.
This may be MN but not every post needs to have the man bashing poster who can't think of anything else.

All I can think of is looking for remote work or going self-employed where you can set your own hours. I do a job (copywriter) where I can work any hours I like within a 24 hour period from home and as long as the deadlines are met, it’s fine. Might that kind of arrangement work for you?

OP, if your hospital is anywhere near South London, I'd come and mind your baby whilst you nipped to the loo/had a shower/ate something/got changed!

I've done this for my sister, and a good friend, both of whose children (1-2yrs) were in hospital for more than a week for different reasons. It's so, so difficult, as even if they're asleep, you never know if they're about to wake up and scream for you, in the three minutes you step away from their bedside, and you just don't want to risk it - or risk missing doctors' rounds and the only chance of seeing your consultant that day.

My nephew wasn't best happy about it, but it was better than him being left alone, and my friend's child actually slept happily on my lap for 30mins whilst she went to the loo, changed into some clean clothes I'd brought her, and lay down on his bed to rest for a bit, and drink her coffee.

I really don't know how they and you manage(d) these situations for days and weeks on end. I hope there's someone who can relieve you even for just a little while at a time, so you can get enough respite to keep going. You're doing an amazing thing

OP would only get carer's allowance once her child got DLA.

OP, call the DLA helpline today and request a form. Once you get through it doesn't take long, they just ask for your name and address. If and when you eventually get DLA, it will be backdated to the date you called.

If you need help completing the form, contact your local Citizens Advice.

Does your partner have savings of £16k or more? If less than £16k, you might find you are entitled to some universal credit once your child is on DLA - you would get additional amounts of UC which means that even with deductions for income you might still be eligible for some UC.

I’m sorry to hear your DD is so poorly & wish her well. I’m a senior HR person & have come across cases like this a few times in my (long) career so I can offer an employer type perspective. You do not not say the size of company or how long you have been there, but a large employer should have an idea of how to handle this. I’m going to assume you are an employee of good standing (previous good performance) & a valued team member (you reference being in admin so maybe you have a close relationship with some senior people?) If this is not the case let me know.

First thing to do (when you return to work) is go & see your HR rep and explain the situation. You sound physically & mentally exhausted, so make some notes & that them with you so that you cover the key points. Be honest with them about DD’s illness, the travel situation, your fears etc. Do not feel obliged to provide a solution to the problem, just share where you are. Ask for their advice (expect that they will need to go away and think about it) and what your options are. Be clear that you are committed to the company and your role but also to your family. Ask if there is an employee assistance program (a lot of places have them, they provide advice /counselling / practical support) you can access. Are there any employee groups you can join - we have a working parents network, a network for people with disabilities (inc their kids) who also support each other. There’s always what is written in the policy & what we actually do to help people, I hope you will be pleasantly surprised. I (for example) have an employee who works longer hours when their child is well to effectively “bank” time for when their child is sick. A leave of absence might be possible. Don’t also forget that this stuff might be accessible for Dad too as he has the “bigger” job. You also don’t say how supportive / not your line manger & colleagues are (as not mentioned I am assuming they are ok so far) but you will need to take them into your confidence eventually. (Conscious this is already a long post so won’t add more but tag me if you want suggestions).

From someone in a similar position, look into the legal elements of this sit tight for now - even if it feels awkward being off again. Take care, it's tough. X

I haven't any useful advice, just so much support and care for you in your situation, for you, your poor wee daughter, and your husband. All I can say is, you are doing the right thing, being where you need to be, with your daughter, even though it's so hard. I hope things get easier, and your daughter gets better.

I don't think it truly hit me how cruel the world is until I became the parent of a disabled child.

Employment laws are set up to support employees with disabilities but not employees with children with disabilities, giving next to no job security.

You've got all of my empathy OP. I've recently left my job because my sons disability requires my presence so often it isn't sustainable to work. Even if you and your husband work opposite shifts so one can always be present it doesn't account for the sleep deprivation, the stress, the needing to be in 2 places at once. This doesn't change when you're down one income either.

I think you need to look at all the small bits. How can each of you get more sleep, how can you make hospital stays more affordable, is relocating an option longer term, do you have the time to train in a vocation that is flexible like hair or eyebrows or nails and set up your own business until you're in a better position for nursing? Etc.

Ditto your husband can he take up a vocation and set up his own business for flexibility?

All of this is so much while your LO is in hospital so it's all worth considering when this instance is over.

I am sorry that things are so difficult for you.

I have two disabled dc and I found it impossible to work eventually as it wasn’t fair on my colleagues and workplace not to mention the stress and juggling childcare etc. and wanting/needing to be there for the children too. I decided to take two years out but unfortunately I never did get back to work. You are probably younger than I was so maybe if you took some time out now you could pick up your career later.

Thanks for the mostly(!) helpful comments. I’m not defending DH any further, he’s the higher earner and him losing his job is a much bigger issue than me losing mine.

I can’t respond to everyone individually as I’m too behind but I appreciate the responses and it has given me a lot to think about and look into.

You don’t need to defend your DH. In the real world, most people have the common sense to know that the bills will only be paid if the higher earner keeps their job. Unless a family can manage on the lower earners wage ( which is usually unlikely). Wishing you well and hope you find a solution you can all work with.

Both mine and my husbands employer waived the 21 days notice for us when it was about our child's disability. Just so you know, it might be worth both having an honest conversation with HR. You DH might not be in a position to use it now as the higher earner, but this could be an issue for a long time and it might be appropriate in the future.

My work also let me take 1 day a week off parental leave for a stint rather than dropping to even more part time, to try preserve my hours for me.

But anyway, it's really tough and this is why you will find a lot of disabled children have a stay at home parent.

@VinnieVanLowe how old was your DD when in hospital? How long was she in for? How many times was she admitted to hospital? What do you and your DH do for work that allowed that much flexibility? How long did it take you to travel to and from the hospital from home?

They're really not that supportive for disabled employees unfortunately, although I don't dispute your point at all.

whilst I don’t want to deny your lived experience, the equality act 2010 absolutely extends to carers and parents of disabled people.