What happens if you can't physically look after your DC?

[Greenhand]

This is a ridiculous question possibly. But I am worried enough to deal with the ridicule that's likely to follow by asking.
I have 3 teen DC with ex and slightly different proportions of days a week for each child due to activities that works out at 50:50 for 2 and less for one who decided that my new pad is a bit tiny and so see slightly less.
I have a progressive auto-immune disease which isn't responding to treatment and a new treatment can take up to a year to see a beneficial effect (if it works at all) - meaning it could be a long time before there is any improvement. And currently it's just going downhill.
I'm tired and in a lot of pain and that's not going to help perspective.
There are things I need help with etc.#
Currenlty I muddle through. But the drugs make you prone to getting ill with normal infections like a cold. Clearly I am terrified of Covid but I won't bore you with the associated anxiety.
My children aren't sympathetic - they are teens and they don't want to understand. Ex is not sympathetic in nature at all which doesn't help. He's insistent I have the DC even if I'm ill. I have to be able to drive if I have them due to bus arrangements for school (it's a state school but we have to pay and there are no spaces on busses closer to me).#
Some days I can't move from the sofa but I have to keep working to afford to live - it's a remote laptop job so OK as it can be.
I just don't know what will happen in the future if I get worse. I have no savings, no assets but not entitled to benefits until I lose my job (which will happen if I have too much sick time). No family or friends to help (too old, too far away, too many kids of their own etc etc).
I've always had a plan B in my back pocket, even a plan C. But given how rapidly I am losing mobility, I don't know who will look after DC as ex will insist I have them even if I am housebound. Eldest DC is nightmare and can't do anything for themselves and has complex additional needs. The other two can get themselves food etc but won't help around the house - whether they should or not is a whole other debate but all I can say is none of their friends do.
I would feel much better if I could get a back up plan in place for both illness and flare ups. Right now I can't even work out how to get them to school (moving is not option as I can't afford anywhere else and I'd be too far away unless I lived in same village as ex.)
Is there anyone who knows an organisation who could provide advice?

I don't want to read and run. Maybe citizen's advice bureau?
You may be eligible for PIP, which is designed to support people even if they are employed.
That doesn't really help with the kids but there may be some money available at least.

Citizens advice for help claiming PIP- disability benefit you can claim when in work.

I'm sorry I don't have any other advice but I really feel for you and send all the best wishes.

There are plenty of disabled parents who look after children successfully. You may qualify for direct payments or other social care - do you or the children have a social worker? This would then help with household tasks to enable you to be the best mum you can be. Have a look into PIP etc... Would your teens be entitled to carers allowance (since they may be doing caring work for you more and more)

How old are dc?

Does your eldest get PIP?
There are disability social workers who may have ideas because of your eldest. Your council should be able to do a carer's assessment and/or care assessment for you.

How old are the DC and how honest have you been with them about your illness, treatment and the likelihood of it working?

About an organisation or where to ask, I can't help I'm afraid.

Sorry DLA if dc under 18 not PIP.

I don't know the answer but you really have my sympathy OP. DH also has an autoimmune illness which currently has him housebound and I know he worries about something happening to me or us breaking up because he doesn't know how he'd cope with our daughter on his own

Two possible thoughts: dh was referred to an occupational therapist via the gp who gave some advice, maybe that could assist you? Also, is there an "association" for your autoimmune disease? Maybe they could advise re applying for PIP etc?

Wishing you all the luck

I would try and get advice from social services if you can. If it gets to a point where you literally cannot look after them safely and the children were at risk then social services would naturally become involved, your ex would be expected to step up but if he really couldn’t take them full time they would have to go into foster care.

Op- this sounds like a really hard situation. I think you should talk to your gp to see if they know of any support that you can access. And you probably need to be very honest about the situation with your kids and ex.
The condition you have, is there a charity or organisation that supports people with the condition? They can be amazing and offer lots of advice and help.
Sorry I can’t think of anything else. Hugs xx

In addition to the above about PIP, occupational therapy, citizens advice, etc. I think you need to have an honest conversation with your consultant doctor about your declining ability to work and whether they’d support you with medical reports so you could stop or massively reduce your hours and successfully claim ESA. You don’t have to be sacked for illness before claiming ESA. You can resign due to illness under the medical advice from your consultant. Especially if they know your condition is deteriorating and will last longer than a year.

Your eldest DC sounds disabled as well, and if under 16 should be claiming DLA for them, if 16 over it’s PIP. If you are then on ESA and PIP yourself, there should be a care assessment done by local authority to see if your other teen DC can be young carers or if they need to arrange social care for you and your eldest DC.