I need time to stop. Or at least slow down just a little, i feel that my time with my mum is passing me by and i panic with how little time we have left now.
Things are definatly getting worse every week, if not every day. My mum lost use of her legs a few weeks ago and is now practically bed-bound, we have been sent a hospital bed, wheelchair and commode etc for her but it doesnt seem enough and my dad is really struggling. The worst thing is he wont accept help and i know that he needs it but he is pushing people away saying he can handle it when really he is desperate for a couple of hours break. I know that he is scared too and that he wants mum to be as comforatble as possible and have the best care but he took a day showing me how to care for her if he is not there but he is always there and wont let me put into practice what he showed me. I want to help i just dont know how to make him let me and make him understand he doesnt have to do it all himself.
Everyone (nurses, docs etc) were still very calm after this happened and said that as long as she was still eating well then we needn't worry - she is no longer eating well so therefore i think i need to worry?! she has no appetitie at all anymore and only eats because we make her.
After her legs went they tried radiotherapy for her to at least get some feeling back into them or maybe even make it possible for her to weight bare so she could at least transfer herself from bed to wheelchair and although some feeling has returned it has slackened the muscles in her neck and she is now unable to swallow so we have a speech and language nurse coming to try teach her how to swalloow again. It feels like every action we try take for her to feel better has an opposite negative reaction and something else goes wrong or she ends up in agonising pain after the radiotherapy that they say will not prolong her life or make the tumours disappear but will just 'help' i dont see it helping.
Im scared everything is changing so quickly and every visit i am shocked at how different and weak she is, it is like she has aged 30 years in 4 weeks ( as she tries to hide the extent of it when we talk on the phone) i just want her to be pain free and happy and i know this is a huge thing to ask but i just want things to be normal even just for a day when we can be carefree and worry free family.
