I'm just about done

…Nineteen years after I started caring and only a few months after finally starting to get paid for it. I’m just about done.

About six years ago, I started to fall/collapse - so I took the route of trying to get a diagnosis. 4 doctors and 4 hospital departments later… I’m no closer to a diagnosis now than I was when I started this journey.

Meanwhile, my health is getting worse. Walking a mile exerts me to the point where I am spending most of the next week in bed and resting to get over the illness. During this time I am barely able to see to my own eating and toileting needs - never mind caring on top of that.

I’m at the point where I feel that getting myself a wheelchair is the only way forward for me… but I don’t have a diagnosis and I don’t know if I can get a prescription for a wheelchair with the way that things are right now.

Of course, I have to have another problem, too… and that problem comes in the shape of the DWP. I know that as soon as I sign off carers, they will be all over me to get work and I’m unable to get disability benefits in my own right, despite the fact that I can’t even get up from a chair without falling/collapsing.

As far as work goes, no employer will take a chance on hiring me as I am, even if I have an idea of some sort of work that I could do - I learned that through experience just before the pandemic.

I no longer know which way to turn given that I can’t be left alone any longer and I can’t give up my caring role without being hounded to find work in positions that I don’t even know if I can do the job or not. There’s no work trial process that I know of, even if I could convince someone to give me a chance… then I’m scared that the fatigue will leave me unable to work for longer than half a day a week at best.

I’m in scary times, need help and I don’t even know where to turn for the best

I think you should make a claim for PIP while you are still caring. You can claim for PiP when you are a carer in your own right. Get help from Citizens advice to fill the form in avoid tying to do this on your own. It’s not up to you to convince the person filling the form of you disabilities that’s for DWP. It’s the form fillers responsibility to help you fill the form in correctly to their best ability. And for you to be as clear as possible your current issues.

Provide all your evidence re: appointments make a daily log - yes you will feel different and need more help on different days. Make sure you mention as you have here your mental state. Not just the physical problems how long it take you to do tasks etc.

You have a disability albeit not diagnosis but at some point you will get one.

Are you on any medication at the moment.

PIP is not based on diagnosis, but what you need help with for daily life.
Who are you caring for? What support are you currently giving?
“Caring” for the sake of Carers Allowance doesn’t just mean hands on bum wiping and food prep, it also means you have to be available “on call”.
Are you walking to see your caree?
What other options are there? Cycling? Car? Bus?