Hi all, my name is Brenda I’m a carer for my 36 year old son who has muscular dystrophy and heart failure I have recently had to give up my part time job as he now needs care 24/7. I have no idea about benefits I may be entitled too and at the moment I have a lot of different emotions,trying to come to terms with so many things at once. Worry for my son, financial worries, the feeling of guilt for the selfish thoughts I have. I would love to hear from anyone and any advice would be greatly appreciated, I know I’m not alone but feel very lonely. Thank you in advance x

Hi Brenda … welcome to the canteen.

Sorry to learn of your present state of affairs … many on this forum will sympathise as it’s very close to their own.

For my part … benefits out there.

First step … an online benefits calculator :

That will give you a good indication of what’s currently available out there.

PIP / Carers Allowance … possibly Housing Benefit … spring to mind.

Universal credit rolled out on your manor ?

Post code checker :

Feel free to bounce any questions off us here on this forum.

Your son.

Others will be along to ask of the support you / he are receiving.

Local LA … Needs / Carer assessments ?

Housing … owner occupier or tenant … social or btl ?

Enough from me … time to crunch some numbers ?

Hi Brenda,

Welcome to the forum.MD is such a cruel disease, you must have many conflicting emotions.
What help is your son currently getting? Does he have support workers from Social Services, or does he now receive NHS Continuing Healthcare? Does your local hospice help? They are increasingly supporting people with serious “life limiting illness” but each one seems to be unique in what is available.
I expect he is already receiving Disability Living Allowance or PIP at the very highest level?
If so, you should claim Carers Allowance, and depending on your savings, may be entitled to other benefits - see Chris’s details.

Have you been offered any counselling? If not, ask your GP what is available.
Do you have Power of Attorney for your son?

Feel free to ask us anything you like.

CHC / NHS Continuing Healthcare / NHS Nursing Funded Care ?