I'm a full time carer for my son

Hi I’m new to the sight I stumbled on it by accident on the internet , I’m a full time carer for my autistic son , for number of years my health has gotten worst I have had asthma all my life which has had traumatic decline my inhalers have been changed so often which don’t work as they should, I’m under consultation with specialist at the hospital he placed me on inhalers that are for copd , they aren’t working so now I’m waiting for another appointment to see him , I also have under active thyroid so I’m always tired my gp just says if your tired just have a sleep , I have pain my legs and joints which do swell out at night so I have to prop my legs up when sleep and also have have my head propped up on four pillows so I can breath whilst sleeping , with being my sons appointee and full time carer can I get pip for myself … My husband said I should apply but I don’t want to loose my carers allowance

Hello Annmarie & welcome

Yes, you can claim carers allowance and pip.

If you are a carer who has care needs, you can claim PIP for yourself and this will not affect your Carer’s Allowance. … If you have a carer, claiming PIP may help them to qualify for certain benefits (such as Carers Allowance). PIP may also entitle you and/or your carer to further help with council tax.

Thyroid - if you think you have an under active Thyroid. Your G.P. can send you for a blood test. The blood test will tell you if you Thyroid is working properly. Although you may need more than one test to fully confirm the numbers. You can not be refused this blood test. Try another G.P. in the practice.

Welcome to the forum. My 41 year old son has severe learning difficulties, when he was 16 he had to become a boarder at school, then at a farm college, then went to residential care, and is now in Supported Living.
It is time for you to make long term plans for your son that don’t involve you or your husband, so you can help him settle in while you are still around to support him. My health was so much better. Residential or supported living does NOT mean you have abandoned your child, far from it. Visits home can be so much better when you are not dog tired.

Thank you for your replys , I was diagnosed about 12months with my under active thyroid and the gp has put me on levothroxine, I’m due to have blood test in December to check if it needs to be increased , !I son is 22yr and was at college up on til last year but was bullied quite a lot from the safeguarding officer on numerous occasions I received a call saying my son had gone missing and they felt he may of gone off the premises , so I had to go down and look for him as he had no road sense and could of walked in front of moving vehicles as the college was on a busy road , he also has speech and language difficulties so any person who doesn’t know him wouldn’t help him , I was always worried that they d stop my carer allowance of is claimed pip , I’m so glad I discovered this sight I don’t feel like I’m on my own so too speak and there’s people out there that gone through the same thing


Is your son getting all he is entitled too. He has high needs and should be getting full benefits.

Have you ever considered a placement in a supported Mencap home. They are very good at supporting people needs and improving/helping towards learning life skills. You can get a respite placement which would indicate if your son is receptive to it. And if you feel confident his needs would be met long term.

My son went to Fairfield Opportunity Farm, now College in Warminster, it was lovely, a small group of students who made huge strides towards independence.
Large colleges really don’t suit many people with special needs, they are far too noisy and busy, but in the right environment those years between 20 and 30 someone can still learn and develop.
Ask your local Social Services department what residential facilities are available in your area for your son. If you knew he was safe, and supported him in the transition phase, it would be better in the long run for both of you. It doesn’t mean abandoning him, think of it as sharing the care.


Has your son got an ehc plan?

If not he will need an assessment if you want to consider a specialist residential college.

Young people with sen can get one if the council agree up to the age of 25. If they don’t agree, and they often don’t you can appeal.

Thank you for all your replys , my son does have an ehcp, I feel I cannot go down the road of putting him into residential care just yet maybe as years progress it may be an option as restbite, but I feel I cannot let him go through the stress of leaving his home his self esteem has already been pushed too the limit , as he won’t even go out anymore because the virus has totally frightened him he gets upset even though we’ve tried to re-asur him he doesn’t quite understand so he stays indoors while I go shopping and his brother keeps a eye on him, hopefully somewhere in the near future I can get him out to meet up with company of his own age

Are you aware of what care options are available in your area.
Your son NEEDS to see others rather than family.
Our local paper featured a girl with Down’s Syndrome running up and down the road because “she couldn’t wake mummy up”. I know it’s not nice to think about when we are not here any more, but as parents of a child with a special need, pretending we are going to live forever is not a luxury we can afford.
Talk to Social Services about options, there may be things available for your son that you don’t know about, especially if you are in the transition phase.


Transition is harder for autistic people than with other disabilities.

I can understand you wanting to leave it for now due to the virus.

However , in time it would be far better to do a slow transition whilst you are still around to assist than an emergency placement one day.

I can understand your son not wanting to go to the shops…I don’t either at the moment!

Would he be willing to go for a walk in a quiet park with you …it can’t be good for mental health to stay in all the time.

I myself have one son with autism and one with a learning disability.

My eldest is moving to supported housing.

After a lot of thought I decided to put in for claim pip, all the advisor asked for was national insurance bank detail , date of birth she never asked for any health issues is that normal , she stated that a form would be sent out and to fill it in , and send back asap , I was worried that it would effect my carers allowance that I get for my son but I did read it doesn’t and can sometimes help my health is getting so bad having to use my inhaler very few minutes when I walk I cannot go far without use of it my legs swell up and my hands keep seizing up and I keep having pain in my fingers , what is like to know is what happens now and how long does it take and will I have to have face to face assessment any information would be great thanks , I’m stressed already just thinking about it

It’s time to listen to your body. I understand that you don’t want your son to move out, but that’s what your body NEEDS now. If your son moved somewhere close to you, you could still see lots of him, mine was home making mince pies, marzipan, etc. this weekend.
You NEED your son to move so that you can look after yourself better, before anything drastic happens.
Start talking to Social Services, about what is available, and how to prepare your son. Nothing is going to happen very quickly, so start that conversation.