to ask what you would do if you got ill?

[sponkle]

I have a debilitating neurological disease that leaves me bed-ridden for up to 6 weeks at a time, although I can go for months inbetween and be absolutely fine. I have 2 children and DH works full time. Parents live an hour and half on motorway away. PIL live 6 hours away.
DH cannot take this amount of time off work to care for me and the children. I feel I cannot ask friends as the odd hour ok but weeks on end is different no?
My Mum has suggested we get a nanny but we would not need one all the time and as I don't work money is v tight.
Any ideas of what I can do to get some support?
I just cannot manage and desperstely need to get something put in place just don't know what that something is!

Do you have a hospital social worker? It sounds like you should.

I was in bed/hospital for 7 weeks with hyperemisis earlier this year. Mum is 6 hours away, PIL 4 hours away and both have commitments. DH usually works away. We struggled by with extra days at nursery, grannies when we could, friends, a wing and a prayer.

No I don't have a social worker. When I asked the GP what I could do he referred me to a charity who can come and check on me and make me a sandwich the first 3 times are free but after that it is £45 per hour and they don't do childcare or help at home it's more set up for looking after old people who look after stroke vitims in a repsite capacity.
What would a hospital social worker be able to do?

I dunno really. But sort you out, I guess.

Oh, sponkle, welcome to the debilitating neurological disease club! Mine's MS, btw. I'm now crippled all the time, can't move much at all except right arm and gob. Does your illness have a support society? They will help you if so. Try www.disabledparents.org hope link works. ontact your local council social services disability dept. They are legally obliged to provide help for you, inc. as a parent. Do they provide direct payments scheme for you to employ an assistant of your choice? Ask for an assessment. Also youngcarers.org will advise. If your dh is registered as your carer he is entitled to time off unpaid. Try Disability Law Centre. You need good advice about your rights in this situation; make sure you get it!

If you were bedridden for 6 weeks you'd need a carer
It might be your dh would have to leave work and you'd get carded and disability allowance to live on

What a difficult situation for you.
£45 per hour is ridiculous. You should be able to get support from a reputable agency for £15-£20 ph. I don't think that's the best idea as it would add up to a lot in no time. If I was in your situation, I'd ask on your local netmum's notice board... Or move to be closer to your parents depending on how close you are/what age you are.

What age are your kids? Do they attend a young carers group if they are old enough?
A hospital social worker would be more interested in reablement if you were leaving hospital, but you could refer yourself for a social worker and have your needs assessed - you may get some type of services.

what age they are

www.direct.gov.uk/en/Parents/Moneyandworkentitlements/WorkAndFamilies/Parentalleaveandflexibleworking/DG_10029416

if needs must your DH has a legal right to unpaid time off, see this link. depends if this is more expensive than paying for help????

HTH x

We could not move closer to parents as mortgage company wouldn't even lend us enough to buy the house we currently live in -bought 10 years ago when both working...only vv modest 3 bed box, and Mum is not really able to be a full time carer.

Mothers help sounds like a good idea although i would not be bale to supervise-I get v confused and have to sleep a lot.

got a docs appt this afternoon. Should I ask about social worker? anything else I should ask about?

Yes, definitely get asocial worker; they'll sort out a lot of this stuff for you. Get advice before seeing them; I wouldn't be eligible for the scheme I use if unable to supervise. Disabled Parents will advise.

Not sure where you are (I am in Scotland) but you should phone your local authority directly and ask for an sw assessment, then it is you dealing directly with them as your GP may interpret your situation in his own way (if he referred you to a support agency that charges £45 ph, he's not really looking after your best interests).

Based on your assessment and your carer's assessment (your husband being your carer), up here you might well be offered respite which you could ask to take as a direct payment and this may go some way towards paying the costs of help as and when you need it.

Of course, you might not be entitled to anything at present (remember decisions can be appealed), but it would be good to be in the system anyway in case your health deteriorates.

A mothers help does sound like the perfect solution for you. How old are your DCs? Not all mothers helps are A-level students - you could stipulate in an ad that you are looking for a more mature person - someone with lots of experience whom you would feel comfortable leaving in charge of your DCs whilst you sleep. We hired a fantastic mothers help 2 years ago following a back injury which left me unable to walk for a while. She had loads of childcare experience, First Aid certificate etc and the children adored her so much that she still works with us now on occasion :)

Thanks for all your advice. Alice you sound as though you really know what you are talking baout. I'm so sorry about your MS, how long have you had it? How did it start and how long did it take for you to get a firm diagnosois?

Tulpe would you mind telling me a resonable rate for a mothers help please, bearing in mind that we are not in London I have never even had a cleaner so no idea about these things!

Alice posted very very good advice.
Once you get into this unfortunate area, you begin ot realsie how little help there is available.
My diabetes made me unable to get ds1 to school, but council couldn't help. agencies had no volunteers available. left high and dry.
You sound too nice. You are going to have to toughen up alot. Get informed. And be very demanding.
Get the disability living allowance forms, for starters. Write down the worst worst times. That will give you £200 odd per month, which will help, atleast a bit.

Thanks Oblomov. What did you do?
Sending off for DLA forms.

Around here there're a fair few nice people who might be able to help on an ad-hoc basis with the kids, eg would-be childminders or nannies with no current mindees or in part- time work.

There're some v knowledgable people in the childcare section from different areas who might be able to advise on what may be available in your area.

Agency nanny? Where you only pay through the nose for the hours you need, so 8am-9am and 3pm-5pm?

Yes, sponkle, indeed I do know whereof I speak. The MS has been a problem for about 8 years now (using wheelchair outside) and deteriorated after a fall 2 years ago, so can't walk at all now. tbh, its a PITA. oblomov is right, get bolshy, get demanding and cultivate a strong sense of entitlement. Know your rights and don't let them bugger you about. Eg, when I first asked I was told by social services children dept that dd was at risk due to my disability, so should be in care! This is not true, but I only found that via Disabled Parents Network after I met a wheelchair mum in a park. Hence my strong advice to get advice from someone on your side before you start. It'll be OK if we get rid of this bloody awful govt in the end! Don't panic.