Thoroughly fed up carer of a child and an adult

Replies

By debzsanderson

Re: Thoroughly fed up carer of a child and an adult
Fri 5 Sep 2008 10:08

Hello Ann and welcome!!

I'm sorry you are having a bad time at the moment. I can sympathise with you about a wheelchair partner-my fiance is 42 and has MS. He has been totally dependant on me for at least the last four years and is also in a wheelchair. We don't really have outside suuport-it seems that we are dealt with and then left to our own devices as if everyhting is ok but "we" know differently!!Do you get Direct Payments?? I recently got them and its so good. The money pays for a carer to come in so I can at least get some "me" time and I have a cleaner who comes in and helps with anything I cant do (I'm really short!!). I would suggest you go back to the social and speak to some one and let them know you need more help and support. I wish you well and feel free to join the chat room in the evenings if you can.

Debz xx

By cherry

Re: Thoroughly fed up carer of a child and an adult
Fri 5 Sep 2008 14:41

you are a hero! Do you have a care for the carers where you are? They any good? OT? Anyone in authority who could help? Maybe call social care direct? Keep your pecker up, doing fab job! No one like you to your family!!

By Claire H

Re: Thoroughly fed up carer of a child and an adult
Fri 5 Sep 2008 21:21

Hi Ann
Sorry to hear your having a bad time, with regards to your daughter can you go back to your gp? You and your daughter need to be re-referred to get another Ket Supporter they cannot just leave you unsupported. Maybe you can ask the school for a meeting and tell them abt your concerns - sorry am not much help- my son has disabilities and i have got a meeting coming up with the school .
Keep your chin up xxxxxxx

By Ann_C

Re: Thoroughly fed up carer of a child and an adult
Mon 8 Sep 2008 08:19

Many thanks to all of you that have replied to my post. Key support workers in this part of Britain are so hard to come by that it could be many months before my daughter has one again! In the meantime we are meant to struggle on alone - the new School he is attending are supportive but as it is a massive change for her she is finding it very hard to cope with and her behaviour has become very erratic. Having been away this weekend - my mums 80th- she has been manic either totally hyper or very angry and violent and comments were passed by my family that there is no way that they would be able to cope!
I have to admit to having cried at least three times in three days - and although I have a very supportive GP he can do no more for me.
I did forget to mention in my original post that my other daughter is under severe stress too as she struggles from giggle incontenence and everytime she laughs - as most 13 year old girls do - she wets herself.
She is receiving treatment which sometimes works but there is not a lot that can be done until she has started her periods or had a baby.
Never mind eh - we are all dealt a hand of cards and have to play the best hand we can!
On my other half - well he is still in pain as he is suffering from Pericarditis which is very painful and he could suffer from this intermittently for the rest of his life!!
To Claire H - good luck with the upcoming school meeting!
Cherry - thanks for you support and Debzanderson - nice to hear that there are others in my position with a young wheelchair bound person to care with.
Thanks to you all - it is comforting to know that I am not alone.

By katew

Re: Thoroughly fed up carer of a child and an adult
Mon 8 Sep 2008 09:44

hello anne

never fear you are not alone. i care for my hubby with ms and he too at 43 is totally wheelchair bound. he relies on me for everything now, and as we speak hes in hospital recovering from pneumonia!

firstly the school can sort out any concerns you have for your child and they can apply for further funding for indiviual support for your child (i know as i used to work in a school supporting kids before i becam hubbys full time carer)

i know many of us on this site deserve medals and you more than most.

my best wishes are with you

kate

By Ann_C

Re: Thoroughly fed up carer of a child and an adult
Tue 9 Sep 2008 08:20

Hi Katew
Thank you for your lovely words!

I hope your husband is feeling much better now and send all my love prayers and best wishes to you both. You didnt say whether you have children or not but when my hubby is in hospital I find it very dificult to fly back and forward to the Hospital which is about an hour away (and if he needs to go to the specialist hospital it is a two hour drive!!) Thank GodI I have a wonderful son who pitches in but he is due to leave home next year to go to Uni so my elder daughter will have to take over the caring role he deputises for.

Anyway I do not consider that I deserve a medal- I feel that people like you do!

All I would like is recognition of the time that I spend caring for my disabled dependants - frankly CA is an insult and the fact that I can only claim for caring for one person is a joke!

One thing that really gets my goat are hospital parking costs - I hope you are eligible for free parking and for some help getting to the hospital to see him -I think it is disgraceful that the Social and Health Services seem to rely on charities to pick up or help people who are not on Income Support pay for the parking and travel!

Anyway enough of the rant for now - God bless you and your husband and I will be thinking of you and him and hope he recovers very soon!

Ann