Let me tell you about my situation.
16 years ago I had a great career. So did DP. Neither of us on benefits. Never claimed in our lives.
DC were born very prematurely, twins. Birth trauma. They are both autistic but with associated learning disabilities. At 16 years old DS is still in nappies. Neither of them can prepare food or even have a shower on their own. They couldn’t even go and pop something in the front garden bin. They both need support 24/7. They are with me 24/7.
Three years ago I sold my house, Mum sold hers, and we built an annexe on the new house. Mum and stepdad live in the annexe. Mum has cerebral palsy and dementia. I am her carer and have to be on hand 24/7. Last night she rang me at 1am because she thought she could hear rats outside (imaginary). My stepdad is nearly 80, he’s had a heart attack and more recently bladder cancer. He’s not in good shape - we take him everywhere and I do all his life admin too.
Four years ago DP collapsed at work. A career he absolutely loved in IT. They thought it was a brain tumour but it turned out to be a rare neurological condition. After being bed bound for around 8 months, he’s now trying to get some semblance of quality of life. He still has days when he’s too ill to get up, but if we’re careful and avoid triggers, they’re rarer. He’s not allowed to use any kind of screen, he can’t do anything that involves bending or turning his head frequently, and he can’t be in an environment with bright lights. We have tried and tried to think what he can do but can’t think of anything. Probably some kind of self employment but not sure what. He doesn’t get PIP.
I care for everyone. Until 12 years ago I cared for my dad too. He died of Huntington’s disease.
I am self employed and until Christmas I worked full-time. Copywriting. AI has absolutely killed the industry and I’m struggling for work now after 16 years of having a long list of clients. I switched to copywriting after the DC were born and their disabilities became evident. I gave up my much-loved and well-paid career. My dad also needed care from around this time.
We are constantly on the bones of our arse. I work through the night. I’m earning very little despite working long hours, less than the minimum wage a because AI took what I did. I get very little sleep. We get Universal Credit, and DC get DLA - we are waiting to hear about PIP.
I am so scared for the future. My DC won’t ever be able to work. I can’t get sick because if I do, everything falls down. I’m chronically sleep deprived. Luckily I have AuDHD so I can manage but it’s hard. My life is spent running around after almost-adult DC who will be with me for life, my elderly mum with cerebral palsy, and dementia, and to a lesser extent DP and stepdad. And then I work when everyone else sleeps.
I really really wish we weren’t on benefits but I can’t see a way out. I live in fear of our only lifeline being stripped away. I haven’t had a holiday in 12 years.
When people flag off lazy, shyster benefit claimants I wish they knew what some of our lives were like. I have no options here.