Disabled Father, disabled son, I need someone to talk to.

[OMGhelp]

Hi, this is my first post and its really a call for help and support. My husband suffers from Rhumatoid arthritis to such an extent that he now uses a wheelchair when outside and can't hold a pen well enough to write his signature. My son who is 10 years old has learning difficulties and get 1 to 1 support for 15 hours a week paid for by the council, although the school gives him nearly permenant 1 to 1 support. He is a delightful child, very loving, but he takes everything literaly, lots of other problems, but no major physical ones. We get Full DLA Mobility/care for my husband, but we have been knocked down from full DLA care & mobility for my son to only low rate mobility because his old school said that he didn't need any extra care (they also were providing him with 30 hours a week of 1 to 1 ). I believe we have all the financial help we can get, but I am the one who needs caring for now. Does anybody know of clubs etc. that can help me cope. ( I am also on mild anti-depressants to keep me on an even keel).

Hello and welcome to Mumsnet. You might also find it useful to repost this onto the Special Needs board as well (the Special Needs board is semi-hidden, you have to go to the Special Needs section on topic list, or click on the "include special needs box" on the "Active Conversations" row near the top of the screen to view the section.

Sorry to hear that you are finding things so difficult. In terms of clubs are you thinking of self-help groups, or somewhere that might provide some sort of respite care?

welcome, do you get carers allowance?
have you let childrens taxs credit know about the DLA?
when you say you get 15 hours a week support from SS services is that from a befriender or direct payments?
assuming that your sons new school are supportive could you re apply for DLA to get higher rate?

I don't really want respite care as I enjoy being with my family, my husband should be on the stage with his sense of humour and the ridiculous, I do occasionally go to my Mums for any breaks I need but as my husbands condition has worsened, if I need a break it means roping in the two grown up children to take time off work to help at home and there goes the spontenaity, the times when you just want to GO! or you lose your marbles. I guess I need a chat group, someone I can talk to and get everything off my chest without blowing up at the two people who can't help their condition.
I also need some of the help you give to new Mum's regarding getting the 'between the sheets' part of life back on track. I am so much my husbands carer now, that I can't seem to be his 'lover' anymore, Im also too scared of causing him any pain.

Hi It sounds very tough for you.
Have you googled?
Crossroads runs carers clubs not sure if in your area, there are other organisations running carers clubs, maybe look in yellow pages/Thomson directory, maybe some of the arthritis organisations amy know of them.
Sorry not to be more help

contact a family has a very good website i use it a lot as i have a 5 year old girl who has a learning disability...its a very supportive site

I get carers allowance and all of the extra disability premiums that go with income support as hubby needs me around 24/7 to help him with standing/ sitting/ making cuppa's/ etc/etc.

One other thing, I've started the menopause and finding the hot flushes bad, but I have to have the heating on because of my husbands condition.

I just know there are carers clubs just not sure how to find them, would your GP/practice nurse know of any worth a try
For the between the sheats stuff, how about making a date?, nice food/wine/chocs/film whatever is your thing.
No pressure cuddling
If it is painful for him just stop.
DOes he miss the physical side too? have you chatted to him about it?
Feel free not to answer these obviously just putting a few ideas out there for you
Oh and welcome to mumsnet

OMGhelp

i am just off to bed shortly. i have been my dh carer for a few years, i have 3 kids, two with asthma/eczema, one of those with other issues, speech issues, low tone etc.

qwhere are you

is my own blog of our last few years. i posted on there yesterday about my own issues regarding adjustable from carer to wife.

Making a date, that may work. He definatly would like more, but when even trying to pinch your wifes (me) bum, hurts it gets upsetting for both of us.

Im in Hereford, West Midlands. Actually more towards the Welsh Border.

Thank you all for replying so quickly, it has already given me a boost.
I have to go now, bedtime. But I will be back on and taking up your suggestions tomorrow.

we were in contact with a hospice (but not sure if you will be able to access this facility, sopeak to district nurse?), i actually went to reflexology at the hospice centre for myself. was very relaxing.

LVOC hows dd1?

she has had a good day, and says she has tried not to worry today.

sorry to go off on a tangent OMGhelp

1dilemma, i did have a screaming 2yr old earlier going 'I WANT DADDY HOME HOSPICAL, GRAMMA BRING HIM BACK, WANT DADDY WAAAAAAAAH' happens every thursday late afternoon when we are witing for dh to come home from a check up.

sorry OMGHelp.

Ummm
bl&&dy good job he only gets checked on a Thursday not every day!
Sorry to be flippant, I'm really sure this will all settle down, like we said there must be all this stuff that just needs to come out somehow.
Bet you feel like going on holiday all by yoursef sometimes.
Can you get any more reflexology!!?

Is she a Daddys girl?
Went to pick my middle one up from nursery the other day only for them to explain he was crying because he wanted daddy

i cant at the hospice, but think i will look into it for myself privatly as was very relaxing.

dd3 comes with us on mondays for blood tests at the hospital, and dd3 and I go and have a drink and cake inthe canteen and if the weather is good, go and see if the horses are in the field at the back of the hospital grounds. so ashe gets stroppy when dh goes without her

she is very much a mummys girl, but give her 6months, i reakon she will switch over. lol.

Hard to tell if it's the cake or the horses that's the attraction
Massage can be very soothing.
We put some lavender essential oil in hot water in various rooms last night it was lovely (we're ment to be puttng it in nappy bucket!)

I have found a great way to treat yourself without breaking the bank.
Find out if your local college do Hair and Beauty courses, as they always want guinea pigs and you can get your hair cut and blow dried for free and I recently had my hair done in purple, red, orange and 2 shades of blonde with the hair cut and blow dry for only £27.00. The beauty side is even better, a full body massage for £7.00 or a leg wax for £4.00. Facials, manicures and pedicures all dirt cheap.
For me its getting the caring sorted out enough to give me a free morning.

i know OMGhelp, dh needed trianed carers, and could never be left alone at all as he was attached to an artificial heart. its very tiring if you never get a break.

can you apply to your local PCT about getting funding for carers? ours was done through dh hospital social worker.

do you have links with any Rhumatoid arthritis support groups, just wondering if they can give you any pointers.
being a carer is very hard i have kids with autism and DH who is quite poorly, but i am not a carer i cannot even claim carers allowance cos i get incap
i end up suffering from responsibility fatigue.
there is a carers section on mumsnet but it tends to be very quiet on there. maybe we could liven it up a bit?

To onlyjoking, are you getting DLA for everybody in the family who you can claim for? How about your husband getting carers allowance for one of the children? or would the extra carers take you above the Housing Benefit threshold, and leave you less well off?

DH does get carers, the three kids get DLA and the macmillan nurse is going to fill the forms in on thursday for DH to get DLA