I’m sure almost all of us who care full time for a very sick person feel that way, at least some of the time, and the guilt goes with the territory. I set out to make mum’s last years the best they could be, never really thinking I’d end up caring for her full time. I still intend to make what time she has the best it can be, but it is extremely hard to give up my own life while I do it.
I could get care in - but having had two lots of reablement I’m not really happy to hand over physical care at this stage. Mum had water infections back to back when we had carers looking after her, and has not had a single one in the several months since I’ve been doing her care on my own.
There may come a time when I have to get care in (same for you), and I will do that when it’s really necessary, but in the meantime I have settled for having no life of my own. Mum is doing well cognitively at the moment and that makes it doable and worth it, because she really appreciates it.
I find what escape I can - I have a laptop downstairs and while mum watches her favourite shows I can escape into my own world whatsapping, playing an online game or posting on forums. I get out for an hour sometimes, when mum’s feeling well, but as any carer knows an hour is not enough to really feel refreshed.
Caring for mum has really opened my eyes to a whole world I knew nothing about - people like you (and now me) sacrificing everything to provide care. We know it’s not forever, and I sometimes sit and dream about what I’ll do when I’m “free” - then like you, I feel awful for the longing to be free as that comes at the cost of mum’s life.
Friends and family all said the usual things, I’ll come round, I’ll sit with your mum, just let me know how I can help - none of them revisited those offers! I know they don’t really want to do it, and were just being polite. I understand what you’re going through there. It helps me when I hear from others going through the same as me, I don’t feel so alone, and I hope you feel the same hearing from others here - keep posting and have a think about some of the suggestions people make - they’re not always the right ones for you but sometimes there’s something you hadn’t considered before.
Wishing you all the best, and just know you’re not alone!