Hello. My name is Deb. I have been a member of this forum for a while now but have never posted. Not really sure how this all works.
Bit of a long story, but here goes.
My daughter is autistic and was diagnosed with an eating disorder back in 2014, aged 12. Since then she has developed various medical conditions, mainly relating to the eating disorder, such as scoliosis and osteoporosis, she also has severe anxiety and depression. She turns 18 in March.
I became her full time carer as she needed constant supervision.
In 2016 I had a brain haemorrhage and spent a month in hospital, a week in critical care.
I have recovered well but I am left with occasional but severe headaches, neuro fatigue, vertigo and poor short term memory, however within 2 weeks of leaving hospital I went straight back into caring for my daughter.
I now have very painful osteoarthritis to add to my own list of ailments.
I have recently hit a brick wall. I have lost interest in everything, have a real “can’t be bothered” attitude to life, I’m irritable, angry and probably not very pleasant to be around.
Of course, I am still caring for my daughter but feel I am going through the motions of life.
I feel completely mentally, physically and emotionally exhausted.
Yesterday my daughter had her f2f PIP assessment and I don’t feel it went well. I have no idea what we’ll do if she loses that and I lose the small amount of carers.
Anyway, I’m sorry for the lengthy post.
How do others cope with this carers burnout?
Thanks for reading.
Deb.
Hi Deb
That is a lot to deal with…
Has your daughter had a needs assessment and yourself a carers assessment. Extra support could help.
Making an appointment at your GP would be a good idea to.
I have two boys one with autism and one with a learning disability. I have very few breaks.
I try and exercise when I can and listen to music.
Is your daughter at home with you during the day or is she able to get out with support?
Hopefully others on here will offer support and suggestions.
For the sake of your own health, you need to arrange for your daughter to be cared for by someone else. She is entitled to education to the age of 25, something the LA’s won’t tell you. First step would be to contact IPSEA.
I know how heart wrenching this is, my own son became a boarder at school when he was 16, due to my own health problems, but it has to be done, now what either of you want, but what is needed.
Hello and welcome!
When was the last time you had a break? Me time is crucial for carers. Even if it is just some time alone out by yourself it still counts. Find ways to have a break.
As finances are an issue, you need a full benefits review. I feel confident that there are some you may not be claiming for you AND your daughter. I’m not an expert, and as my son is now 40, son thing may have changed a bit.
Hi Deb,
Welcome to the forum. No wonder you feel burnt out with your own health needs and caring for your daughter.
Definitely check what benefits you are both entitled to Benefit calculators: what benefits can you get - Citizens Advice
If your daughter doesn’t get awarded PIP it’s worth appealing as more people win than lose appeals.
I agree with BB, a specialist day or residential college might work for you both. Your daughter would have day or 24/7 support and you would be able to have a break and focus on your own health needs. There is info here https://natspec.org.uk/find-a-college/search/
Melly1
Please contact your local Citizens Advice. They can do a benefits check and see what you may be entitled to. They will also help you with any form filling or appealing against DWP c**p decisions! You MUST appeal if you are not successful (1st stage is Mandatory Reconsideration) then again for independent appeal. Your local Citizens Advice should help you through each stage of this!