WIBU to keep daughter of school because I am ill

[Alwaysbekind2014]

For the first time in my life I have flu .... not a cold !
I have a fever of 39 since last night, my body aches including head and chest is awful. It came out of no where and has knocked me for six. My back and legs are so painful I have been in tears.
I am a single mum, full time carer of DD who unfortunately has complex heart defects, lung disease, intestinal failure and is immune compromised.
I feed her 3 hourly, do 14 hours of IV nutrition, plus meds etc
I couldn’t get any help or restbite so been plodding along the last 24 hours.
The likely hold of her catching it is high and I dread to think what It would do to her. She is on a part time hours at school currently .1.15 -3.10 there is not point in my going home in between by the time I get back it would leave v little time to then have to travel back to get her.
Normally I sit in the Starbucks at the end of the road / do emails / drink to much hot chocolate.
I can’t even imagine doing this tomorrow 😭😭

Is your DD not entitled to free home to school transport?

Is there any local authority transport that could be arranged. It sounds like the few hours she will be at school would give you a much needed break.

Your illness has probably hit you harder because you are very tired to begin with. Is there anyone in your familly that can take over for a few hours to enable you to have some decent rest?

I would call the hospice again if they have not place could your daughter be admitted to a regular childrens ward for 24 or 48 hours if you are really ill? (I apologise if this is a silly suggestion)

Unfortunately it is something that might happen regularly and you need to have backup support in place. It is normal, for even the healthiest people to be incapacitated for a few days by a bug or virus every couple of years or so. In your situation you are likely to get run down and so you need to look after yourself with plenty of breaks.

Best Wishes

Not at all unreasonable, if you have 'flu you cannot go out.
What I do think is unreasonable is that you have no help. Nobody should have to look after another person single handedly. I've been in a carer's position in the past but I had others to help me and time off - you need that.

How awful, you poor thing. Is there anyone who can at least come and make you a cuppa while you struggle on?

Is there an emergency number for your local social services? It might be called something like the Front Door service. Call as many relevant services as you have the energy to find, don't just rely on the ones you already use. Let the school know too, they have a safeguarding responsibility to your daughter, and may be able to push for some emergency support.

Tell the hospital you're not physically capable of changing the IV line or taking appropriate care of her while you're ill. It's hard, but you have to be brutal to get the help you need.

Are there any local parent support groups for children with similar needs? Someone may be able to bring you a hot meal at least.

Do not worry about keeping her off. Do what you need to keep yourselves healthy and safe, rest as much as you're able.

I have just laid on the sofa crying for hours ( daughter is still sleeping ) I’m waiting for her ivs to finish.
The support has been terrible
We had a new key worker last September after our one got promoted, this new key worker hasn’t met my child in a year. When we were having trouble getting her in to a school she was not contactable ... never turned up to merging etc and then left. We had been waiting to do to panel for personal budget for 18 months.

You poor, poor thing.

What a lot of pressure on you.

Of course you can’t get your DD to school under these circumstances.. cut yourself a bit of slack and accept that if you can’t get help , then she will be off school until you’re able to manage to take her or get cover.

These things happen to people without your added massive challenges.. What choice do you have?

I feel very sorry for you OP x

i really wanted to tell you that you were being massively U, but honestly reading your posts, I think you may just need to keep her off. Please do not stress yourself out with anything more than you have to anyway.
It sounds like life is really, really hard for you and your little girl, and i am very shocked that there is no support for you. Please, when you are feeling stronger do challenge this, because you need some support.
Im so sorry that things are so hard for you, hope you feel better soon.

You are amazing to keep looking after your dd when you’re feeling so I’ll.

This is the sort of situation where getting your MP involved can really speed things up. When you’re better, I’d suggest ringing or emailing your MP, explaining your situation (maybe include a link to this thread) and ask for their support in getting respite care sorted out ASAP. MPs can usually speak to senior people in social services and the NHS locally and get things moving.

Yanbu to do whatever you have to do to make it through the week.

You definitely need to push for better respite/support/contingency arrangements. I wonder whether a letter from a specialist solicitor would be a worthwhile investment to get things moving. Do you know what other parents within your local authority have got? And how they went about it?

I really hope you feel better soon.

MP is a great plan (and free too).

Try calling the ward again and tell them that you are unable to care for her because you are too unwell. There is such a thing as a social admission or a 'soft' admission, where the patient isn't technically unwell but if they weren't admitted they would become unwell.

I think you are amazing. It's not right that you have to care for your daughter on your own at the best of times, never mind when you're ill. 'flu is terrible! I live in dread of it (next year, get the 'flu jab). You won't be well for a couple of weeks.

I honestly wish, right now, that you lived next door to me, I'd willingly help you.

It's appalling that key workers don't visit and no-one gives you respite.

As I said in previous post, I had good help when in a carer's role but that was a few years ago, things have obviously changed.

Bloody government.

What Lougle said, I've only just read it. Sensible advice rather than me going off on one, however well intentioned.

Bless you & your daughter.

I'm awe of parents with home TPN. It's such a huge ask'

Is there any chance of the school sending someone to collect your DD?

Seriously, when you are well you need to contact the local authority's school transport department because your DD must be entitled to free home to school transport. I'd suggest you also contact the Council for Disabled Children for help in enforcing your right to more respite care. Alternatively, might you qualify for legal aid? If so, it would be well worth contacting solicitors who specialise in community care, e.g. Irwin Mitchell or Simpson Millar.

Toddler tea please I wish it was more well known and understood.
It’s a nursing job not a parents job. We do it of course but it’s so under appreciated compared to other illnesses.

Does your DD have an EHCP? If she is unable to walk to school because of her disability, then she is entitled to free home to school transport, btw.

She has a echp and has 32.5 hours a week 1-1 but we currently can’t use it all as she has a temp picc line meaning tpn is running in the mornings ( 1-1 ) can not have her on tpn.
She can walk ... although does use a swiftly chair at times.

contact your local carers association anyway even if they cant help at moment

I’m so sorry your going through this. And I’m sorry if anything I suggest is daft or completely unworkable I’m just coming up with as many ideas as I can

• does she have a social worker?
• could you ring your gp and arrange for a nurse to come out and do it
• failing that ring 111 because she needs someone who isn’t ill to be doing this for her she really does

Always have you taken some painkillers?
Try and keep drinking plenty of fluids.

I also second ringing the ward again if she has direct access and telling them how ill you are and that you cannot care for her safely when so ill. If they are unable to do a social admission, what are the options they suggest?

Hoping you feel better quickly

I rang community team and they just said not to take her to school tomorrow.

Did they have any suggestion for help for you?

@Alwaysbekind2014 I don't think a lot of the posters on here realise exactly what is involved. She can't just go into emergency respite as the carers need to be fully trained. And some of the kids we send home on home TPN have incredibly complex fluid management plans. You are right. It's totally a nurses job. I'm a paediatric nurse and we have a lot of kids on home TPN.