Would appreciate some input. My mum is near to end of life. Her decline over a 7 week period has been rapid and the help we have received has not kept pace. My sister amd i have had to tag team and move in with her. Our situation has been further complicated by the fact our father also has cancer. Weve had to deal with personal care and round the clock care until last week when we finally got carers for washing in morning and 3 overnights by marie curie. We are on a waiting list for hospice but it looks unlikely there will be space. We feel totally abandoned. We are shattered. Nobody can offer us proper respite. She really needs 24 observations so we are getting little sleep and im worried about gaps of we cant be here. My sister has kids and so needs to pop home. Today the mcmillan nurse advised it was up to us to pick up prescriptions and i asked hwr how i could leave the house to do so becasue i cant leave my mum. The system seems lacking and ridiculous. Weve now been given a hospital bed which is far better for positioning etc. The district nurses are fabulous if we need medical help which xh we have several times. Marie curie are wonderful but max help is three nights. Mcmillan nurse hopeless. We feel like we're just being left to get on with it and there is no help for sitting with her to allow us to do various things we need to do. Anyone have any suggestions or experiences to share?
