Carers -Lets support each other

Fat_Fairy

it is very moving reading through this thread :A .

I am caring for my son who is almost 12, and has Aspergers and Dyspraxia, and my 57 year old husband who has degenerative Arthritis of all his major joints.

I have no family in the UK and have moved around a lot so no long-term friends. It can be boring/lonely/isolating/depressing, but I think I have changed for the better since having these challenges to cope with - and not many people have a problem free life, do they?.

What I hate is playing the game when trying to get what we're entitled to :mad:

It's taken me 3 or 4 years since my husband and son were diagnosed for it to really sink in that I am a full time carer - anyone else have problems adjusting their mindset? .

lottylouj

im having real problems adjusting, i want to be my DDs mum so badly, and i know i am but i dont feel i am IYKWIM, i dont feel like i can get close to her and she cant show her feelings/ emotions.
i have some family around but not that can help me, they all have there own problems and i dont want to add to that. i dont have close friends, im kinda relying on the professionals at the moment.

skipsmum

Hi everyone,
I care for DS1 age 14 who has autism, ADHD, and non-epileptic convulsions (which is his actual diagnosis and means they dont know what causes his fits!).
I also care for DS2 age 8, who has aspergers, illeal fossal crohns disease, and juvenile arthritis.
Does anyone else find that kids can't just have one disability - they have to get several?
Im a full time carer as I home-ed my boys - DS1 didn't cope at school and DS2 is just too tired to go.
I also have a rescue dog that was described by the vet as being autistic, dyspraxic and ADHD! :rotfl:

fay66

Hi I care for DD1 aged 12 who has mental health and also suffered a head injury and black out in June which she lost her memory and still a loss to what cause it , told exhaustion etc, she doesnt cope at school and been excluded already. There is a bit of personal history she suffered severe bullying last year at school which has now stopped and another private personal matter which triggered she took an overdose last year.

Fat_Fairy

lol i always say our dog is totally autistic, you do something once with her and she expects it every day at the same time then!

fay66

Hey I have a labrador that has hayfever yes lol

avolee

Hi everyone, never noticed this thread before.

I care for my wife who is 35. she suffered a brain hemmorage 6 years ago on our honeymoon, 3 days after the operation to save her she had a stroke and lost the use of her right side ( her dominant side ), speech and half her eyesight. the stroke has also left her with epilepsy. it`s nice to finally find people who understand.

kaz22_2

Hi What a great idea for us carers to stick together, I have a daughter who has Lissencephaly and epilepsy, she is 19, I am lucky in a way, my daughter left school in July, we had no-where to go from here but my transition nurse got working and now my daughter is 100% health funded and the first person to use a new service that has been set up for people like my daughter who has specific health needs and no-where to go when they leave school, she attends day care 5 days a week and they are even going to set up some respite, I do use the rainbows childrens hospice still as they are expanding for over 18's, so I do get some breaks and I also have carers coming to look after my daughters personal care, I really do feel for all those who have to fight for care for their relatives, we helped the transition nurse fight for my daughters day care and that was quite enough but she kept me going. I now help her with talking to other parents of newly diagnosed children, I even did a transition presentation at the qmc in nottingham for 40 student doctors, but I owed her alot if it wasn't for her my daughter would be stuck at home with nothing. My advice to anyone is keep fighting for your rights, keep fighting for what you need or entitled to, I know we shouldn't have to fight but we do and if we give up like I nearly did our relatives will get nothing and we are fighting for them. I nearly lost my daughter last year to Pneumonia and I didn't stop fighting then, she is my world and desearves everything and needs us to help her in her life. Rainbows has also helped us with an end-of-life plan and funeral arrangements for my daughter so when the time comes everything is sorted, they are there for me and there is also someone out there for you whatever situation you are in. My dog Lucy the Lurcher has epilepsy too, we fight for her aswell.

sharon59

Kazz22 you have certainly been through it in the last year just glad everything is falling into place for you now.
Avolee -hope you are in a good position with care for your wife and support and respite for yourself.
I am chilling today as my SIL has gone to day care and will then be going to respite.I am really happy with the family who have her so do relax and can almost forget her-not in a nasty way though but so l can have some breathing space.Fancied going out but have back problem and snow has frozen so its too icy to risk it today so instead am doing nothing but snooze and recharge.
best wishes to all carers sharon x

adamsmum

Hi quite new here and glad I found you all. I am a single mum and carer for my DS who was born with a liver disease called Biliary Atresia and also portal hypertension as a result of the liver disease. He is in and out of hospital for bloods and endoscopies quite alot and my friends would say "how do you cope" I HATE THAT!!!! I cope because I bl***y have too, what shall I just leave him in the hospital and walk away.....we all cope because we love, pure and simple.

By the way to the mums of sick children do you know about Make A Wish Foundation??? My son got to go meet the WWE wrestlers in glasgow with a big limo and everything really fantastic charity and well worth a look for all those sick kiddo's out there....they get to live their dream.

I agree with all that has been said here, I was abandoned by the health visitor when my DS came out of hospital at 14 weeks old....don't think she knew how to cope or what to say because it was so rare....but heck I did not know how to cope either. Thank GOD for family

So nice to meet you all