How much help there isn't?!

Hello

Am I alone in feeling surprised/ let down by how little support there is?! Sounds so negative and ungrateful... 

I'm hoping I'm missing something and someone here can point me in the right direction...!

Mum has been living with treatable but not curable cancer for four years. In January 2021 she was told there was no more treatment available. Then it seemed like she fell into a black hole of no medical professional looking after her. I spent a long time running around in circles trying to figure out who has oversite of her and trying to get support and it's been very challenging indeed.

I found out the GP is in charge (she was under a different hospital for the 4 years of treatment - the GP had gaps in this knowledge) and the GP refers out to community support.

The GP explained they are always there to call for help but this hasn't been overly successful. Firstly, it's nearly impossible to get past reception and often they refer us to the community nurses who then refer us back to the GP or social services... Going round in circles with pass the buck! It's probably our lack of understanding of who does what but it's exhausting. Mum is too ill to ask for help and also likes to say she's 'fine' so that doesn't help! When she's been invited to groups online, she can't do that so the automatic assumption has been she's ok and the support steps back. 

She's had 3 stays in hospital in the last couple of months with infection. Only on the third stay some care support was put in place for coming out. This was 15 mins in the evening to get washed and ready for bed... But they have soon disappeared because mum didn't want to get ready for bed at 18.00 in the evening. 

We're now in the situation where I cannot care for mum how I hoped to. It's too hard and I have a 7 month old. I can't look after both at the same time. She lives on her own and luckily family and friends are helping and we have some sort of rota... I have no idea what happens to the people who don't have family and friends who can help?!! But now this approach isn't working because between us we're too inconsistent and mum doesn't want us to help with personal care. 

So, I've been pointed back to social services. I think this will be a waste of time and effort again because they were only offering 6 weeks of support anyway and after then we'd have to seek out additional care. So I think I'm just going to phone a private company. 

I don't think anyone has done a bad job but it feels to me that the process isn't clear and from experience we just end up going around in circles. 

I'm very fatigued and exhausted with it all. Frustrated with how much I can't help and how hard this actually is. Stressed that I'm not giving my mum or my baby my best. I don't know when I'm supposed to fit in feeling sad! And so frightened all I'll feel is relief when my mum is end of life... I don't want to feel that way! 

Am I missing something?!