Meet the Other Phone. Only the apps you allow.

Meet the Other Phone.
Only the apps you allow.

Buy now

Please or to access all these features

General health

Mumsnet doesn't verify the qualifications of users. If you have medical concerns, please consult a healthcare professional.

Can i just scream/rant/cry here for a while have just posted Steves DLA forms off and feeling sad & crap about it all

129 replies

onlyjoking9329 · 16/11/2007 12:37

i have just posted steves DLA forms and think it is very unfair that after years of doing the Farkin forms for three kids with Autism that i have had to do one for Steve, the lovely macmillan nurse came yesterday to help with the form and as we are applying under the
farking special rules it did mean that we didn't have to fill the whole forms out but it does say quite clearly that it is for people who have less than 6 months to live and that has made me sad
Steves consultant had to fill in a form to say that he could apply under the special rules and his report made difficult reading.
the bit where he put " very poor prognosis" has hit me very badly.
Steve is blissfully unaware of any of this which is hard as i can't talk to him about it.
sorry for the long waffley self pitying thread but i just needed to let it out
to be honest i am not bothered about the money side of the DLA but do need a blue badge for steve as mobility is an issue.

OP posts:
onlyjoking9329 · 19/11/2007 21:51

i took my girls to toysrus a while ago and they brought the ninky nonk and some little figures, it was funny theres these 13 year old girls with their goodies and lots of envious looking toddlers.
the very lovely notquitegrownup chased up the seesaw charity who do an info pack for children with SN and bereavement that came today, i will have a good look at the stuff sometime soon.
some days i don't want to read stuff.
this morning one of the guys on the brain tumour forum died he had the same DX as steve and it hits home.

OP posts:
wrinklytum · 19/11/2007 22:05

oH oj xxxx.You need to tackle it when YOU feel ready xxx.I think it is a sadly neglected part of palliative care.It is THE hardest thing.)I hope that you find something helpful.I know that the hh stuff is difficult to contemplate but they did have a good library( with info for children also) and lovely counsellor who did a lot of the family support.Maybe your Mac could access her to talk to the dcs when YOU are ready???I am sure she would do a home visit xxx Anyhow will stop babbling on.Just sending yopu loads of hugs and good wishes.You are a very courageous lady xxx

onlyjoking9329 · 19/11/2007 22:17

i think when things change here and the kids can see that steve is much worse then they may start to ask questions.
once things get worse Steve will maybe see the need to talk to the kids, but for now thats not happening, i still see the mac nurse who is lovely, steve hides upstairs when she comes

OP posts:
LilRedWG · 20/11/2007 12:01

((((OJ))))

LilyLoo · 20/11/2007 16:06

That must have been hard yesterday OJ it's not a part of a group you want to belong to is it ?

Sending you all big hugs.

Christie · 20/11/2007 22:14

This reply has been deleted

Message withdrawn at poster's request.

onlyjoking9329 · 20/11/2007 23:24

and thats the thing i didn't sign up for this and nor did steve, mind you we didn't sign up for autism either
christie thanks for that i will email you in the morning if thats ok

OP posts:
Christie · 20/11/2007 23:57

This reply has been deleted

Message withdrawn at poster's request.

onlyjoking9329 · 21/11/2007 09:56

thanks christie i have emailed you.

steve slept most of yesterday so i thought he would be awake a lot last night but he only woke up 3 times

OP posts:
triplets · 21/11/2007 15:20

Hi OJ,
We asre all thinking of you here in not so sunny Deal, abit bracing out there today. Love to you all xx

onlyjoking9329 · 21/11/2007 19:43

bit of a crap day today, steve has slept a lot and been on max painkillers.
i went into kids school ( I help on weds afternoons) to be meet by DS teacher who said after lunch DS had been very tearful but couldn't/wouldn't say what was wrong i went to see him and he was still upset and sat and cried on my knee, he just kept saying that his heart was sad but couldn't say why, i just held him and held back my tears.
steve has had a couple of bad days so DS might be picking up on that i dunno, i feel drained and tearful tonight.

OP posts:
cookiesandscream · 21/11/2007 20:08

Babes i am sorry you have had a rubbish day.
it must be heartbreaking to see your kids upset and not to be able to find out why, i take it school are aware of whats happening at home?
i wished i could do or say something that would make things less painful for you all.
have you got someone to sit with you tonight?
are the kids and Steve in bed?

AitchTwoOh · 21/11/2007 20:14

oh OJ... love and peace to you all.

Raffaella · 21/11/2007 20:18

So sorry... I really don't know what to say. Thinking of you.

onlyjoking9329 · 21/11/2007 20:30

yes school are aware of the situation and are very supportive.
it is hard when the kids get upset cos they can't tell me whats wrong unless it is a physical thing, i don't want to put words into the kids mouths by asking them if they are worried about their Dad, and if i asked if they were worried they would say yes but not be able to tell me what about.
all are in bed.
i am worrying about steves pain does it mean the brain tumour is growing, he is not having any treatment at the moment so i suspect it is growing and there is nothing we can do about it really.
he has a bad cough today, he doesn't have a runny nose or any "cold" type things so i am worrying about chest infections as his immunity is currently low.

OP posts:
MaryBS · 21/11/2007 20:35

Praying for you all OJ {hugs} wish I could do more...

cookiesandscream · 21/11/2007 22:06

Babes you must be worrying about so many things that i can't even begin to get my head around.
i just wished that my words could help you and not just be words.
i feel pretty much helpless, and i guess you know only too well what that feels like.

i am sure there are lots of people who read your posts and do not post because they do not know what to say.
i did that for a while but then i felt that SOME words were better than none at all and i hope that at least you can feel heard if nothing else.
Much love and respect (((oj)))

onlyjoking9329 · 22/11/2007 10:12

thanks for prayers and good wishes, sadly Steve has had a very bad night the painkillers are not working and he is being sick, i am waiting for the Mac nurse and doctor to ring back to decide on best course of action, i think they will say hospital, steve doesn't want to go to hospital

OP posts:
claricebeansmum · 22/11/2007 10:15

My heart goes out to you.
(((((((((((((((OJ))))))))))))))

spanielsmom · 22/11/2007 10:26

OJ - I can only imagine how difficult it must be, but I am thinking about you.

I have never posted before on any of your threads about Steve and am one of those famous Newbies, but I have followed them with tears and and I just pray that you can continue to be so amazingly strong.

sundew · 22/11/2007 11:40

OJ - as with lots of people on MN I have read and followed your posts and just wanted to know I am thinking about you.

onlyjoking9329 · 22/11/2007 14:59

thanks for the good wishes, i am hoping he will be pain free sometime soon. i just hate to see him in pain

OP posts:
triplets · 22/11/2007 22:09

Dear OJ,
You are such an amazing woman, I know you wil say we would all do it if you had too, but although my situation was very different, I can to some extent truly feel and understand your pain and frustration at not being able tp put things right, for Steve, for the children, for you. When my son died I felt as though the end of the world had truly come, my only child, life was totally empty, I knew nothing but pain. But I was so wrong, life was not empty because he was no longer here, it was full of people who cared, people I hardly knew, people who found it so hard to know the right words to say, even if they fumbled saying them, people were so kind, it sustained me, helped me to go on, I can see that now, though at that awful time I felt I was on auto pilot. Life is very cruel at times. but I have learnt to stop asking "why", it only eats away at you. I try now to find something positive in everything, look for the good, it may appear not to be there at times, but one day the sun will shine again, all pain, be it physical or mental will be less, I don`t say gone, but less. I am rabbiting, but I to have know such pain, keep strong, xxxx

onlyjoking9329 · 23/11/2007 11:17

Triplets,
i admire your words they are sad but also offer comfort, i don't know how you ever get throu the death of a child
there are somethings in life that are too creul and that is one of them.
we are lucky really we have three beautiful children and some time to prepare for the future.

OP posts:
cookiesandscream · 23/11/2007 14:45

Hello triplets sorry for your loss.
OJ i can still see your sense of humour is still there, keep smiling when you can .

Swipe left for the next trending thread