To be freaking out as I have no fucking idea how we are going to handle this?

[fuzzpig]

Sorry, posting here in a pathetic bid for more advice.

I've posted probably way too often on various about stuff that's going on. To summarise - DH got a prolapsed disc 2 years ago and as he obviously can't work I am now working FT. We have DCs 5 and 3 who will be going into yr1 and 15hrs nursery respectively. DH has been doing all the childcare as best he can (he's a brilliant SAHP, better than I ever was, but obviously in agony)

This summer I have been very unwell. Long and boring story but basically the doctor thinks I have chronic fatigue syndrome which is now in a severe episode after having it 'mildly' for over a year. I have had a month off work and just went back this week. On reduced hours/duties but still finding it very tough and cannot do anything at all outside work.

So the reason for my post today: DH finally has a date for surgery. It's in 3 weeks. We already know I can take 'dependents leave' and I will need to take 2 weeks minimum because DH will be totally incapacitated when he comes home (after a night or two in hospital). I have no clue how we are going to manage this. We have nobody around and have no money for childcare or housework help.

I could continue ranting for hours but those are the bare facts. I'm so worried (and that's before I even start thinking about whether the surgery will work!). Any ideas?!

I would strongly advise you go to school and speak to them about a CAF (Common Assessment Framework). This is a document which will look at all aspects oof the family. An action plan will be drawn up, you will also be able to access funds, sometimes up to the value fo £500 per child, which could be used for additional support at home. The school should also be able to fund before and after school club for you for at least a half term. You could use CAF money for extra nursery.

It's not ideal, as it is usually used for things ike buying new carpets, washing machines, extra curricular activities, but in exceptional circumstances (like yours) it can be used to pay for childcare.

Good luck, take all the support you can get.

Wow that's amazing, do I just say "can you do a CAF for us because xxxxxxx"?

Sorry I am needing spoon feeding for all of this, it's just so hard to think, I have to do the online grocery shop tonight and I'm dreading it especially as we have lots of guests tomorrow (four of whom I've never met!) and I've no idea what to get. Even silly things like that are so exhausting right now, they should be easy, it's pathetic

Where are you op?

In Crawley

who are these guests?
make sure you cut right down on the amount of work you do and be brutal about cutting people out who use up your energy and don't give anything back

As this stress point is a result of hospital treatment the social services at the relevant hospital have some responsibility and might be a less scary point of access. I'm guessing it's Crawley Hospital and their PALS team might be the best place to start for finding out who to ask. It might also be worth contacting your husband's surgeon who will have more influence than he/she might realise, they may have a specific nurse who is expert in support patients and their families.

Crawley hospital PALS contact info

You are a carer for your disabled DH - don't worry about official definitions of carer or disabled for benefits purposes - and he is a disabled carer for your DCs. You will probably get some sympathetic knowledgable local advice from your local carer's centre, they may even have access to a small amount of direct help.

carers support

You may have ME, even to the point of regarding it as a disability if it persists (again regardless of whether you would qualify for benefits) so have a look at

ME/CFS organisation

If it's any comfort 20+ years ago I had ME/Post viral syndrome following viral meningitis when my DD was 3. I recovered eventually and she survived, it was difficult but we did end up getting a lot of help after a battle.

Sorry this is a bit long, hope it is of some help - good luck

Thanks isabeller, it's actually east surrey hospital for the surgery but that's a really good idea, I will look up PALS for them. And I will get DH to ask his surgeon.

Oranges - they are my SIL and her DH and 3 teenaged DCs (miscounted on previous post ). I have never met them. DH lost touch with both his sisters a long time ago due to their childhood (their mother is basically the cause of DH's back injury, SIL has a similar injury). We are finally starting to build bridges and I am really looking forward it, but it is making me anxious too as I find anything social really hard at the best of times and meeting new people and having people in my house are two things I find particularly hard (bodes well for home start eh?)

Today went well :) it was a bit daunting/awkward at first but it was ok in the end. I am really tired now and will probably feel it more tomorrow but definitely worth it.

Also it turns out the SIL who lives nearer is still looking for work so if she hasn't found anything by then I might ask if she could stay for a day or two (their DCs are teenagers so not such a big deal). I was surprised DH said yes to that idea!

I know DSDs would help and they are brilliant with their little brother and sister but they will be in school and we are two buses away (despite being in the same town it's about an hour walk between us) - if they were ours and lived with us I'd feel ok 'expecting' help IYSWIM but I don't want to push too much on them when they have so much else going on not least starting GCSEs.

Glad the meeting/visit went well Fuzz It's good to meet family.

Your Health Visitor or Social Services can apply to Childcare Commissioning for short-term funding for childcare - not sure what the criteria will be as it changes area by area. Phoning the GP is probably the best way to get the contact details for the Health Visitor - your 3 year old will still be under their care even if you've not seen anyone for years! Homestart are great but tend not to be able to help at short notice.

Thank you I will try and sort through all this info tomorrow. Dreading work but at least it's only 4 hours xx

Right, well today was pretty horrible, I am really starting to feel like I shouldn't be there. But people just think I'm tired ummm no!

Anyway. We are finally getting round to doing the tesco shop and then will be writing a list of all the people we need to phone tomorrow!

I guess we could also come up with some kind of calendar thing which might help us see who we will need to help at various points... any ideas? :)

Fuzz pig.

Sorry you have had a bad day. As someone with ME can I say something about conserving energy and working out the cost of an activity?

We have energy for
Thinking
Physical activity
Emotional stuff
Socialising (talking to people and trying to listen!)

You are going to be running yourself really low in all these areas looking after your family. Things like. Tesco shop use up all 4 types of energy but an online shop only uses thinking. It's a no brainer when it comes to energy saving.

just read the post, hope all goes well and lovely people with lots of help and advice i thought I'd just add this one to the mix - www.homestartchams.org.uk/

Thank you, Tesco online done now, as we have prepaid delivery we get 2 deliveries a week so didn't take long to order stuff. Love the categories, hope forever. Social situations have always been extra tiring for me as I am rubbish at them. I reread the spoon theory the other day. I like that description, it makes a lot of sense to me.

Not sure I have enough in reserve to do my list but I have to do it, only 18 days til surgery!

Oh and apparently a nurse will come back home with DH when he leaves the hospital, and will return the next day as well to change dressing and make sure he is ok, so that's one thing I can relax about.

They did actually say there is a small chance he could be discharged on the same day, but I hope he won't be TBH, he won't get enough rest that way as I can't even take the DCs out.

Right, so I am going to phone homestart tomorrow (as well as CMHT about my assessment because yet again they didn't phone me when they were supposed to FFS...)

DH is going to phone the doctors for the HV info, and the local children's centre to get back in touch with the family outreach worker.

Can't do anything about school yet as they don't go back until Wednesday, still about nervous about how to approach them.

Right. Phonecalls made. HV and family outreach workers should both be phoning in the next couple of days. Homestart coordinator said I have to fill in form online and she will look at it ASAP as although she has a waiting list she does approach each case individually and our need might be short term but immediate IYSWIM. Also got my assessment for Aspergers on Friday, eeeeek!

School tomorrow going to ask to see class teacher first and go from there.

Well done Fuzzpig! You've done really well getting all that sorted in one day Hope you get a good rest tonight.

Thanks, I'm quite pleased with myself as I find all that stuff really difficult!

Spoke to class teacher and HT today, they reckon nursery is totally full but they will check in case DS can do full days for a bit (though we would have to pay). They are going to find out about subsidised breakfast club which will be for a month while I'm on reduced hours (which would mean I could still start at 8.30)

They are going to put another note in the newsletter to see if anyone can help with school runs especially anyone whose child does the same nursery hours (12-3) as the midday run is going to be the hardest (the only way I could do that is by splitting my shifts). I need to 'man up' and actually ask some mums I already know though.

Also talked to my line manager - agreed I will take 2 weeks annual leave but then hopefully go on reduced hours for 4 weeks (which coincidentally leads up to half term). Not sure exactly what hours though.

I'm quite confused about my hours as I know I have to do 24hpw to keep my tax credits, but that's going to be hard to fulfill during that month. If I go under that do I go on income support? That might be ok as then we would get school dinners for DD but presumably it would all take ages to come through which might make it a bit pointless?

Oh and also the HV is coming tomorrow :) so I'm not going to phone SS now but wait to see what she says (or maybe she could refer us or something)