My husband has aggressive prostate cancer that has now taken hold into his bones ... we have been receiving the best of care with radiotherapy, chemotherapy and now another form of radiotherapy but it hasn't been enough to control the growths. Two weeks ago he lost all sensation and muscle control from his rib cage down. He had an emergency blast of RT and we are now waiting for any improvements to mobility. He can't sit up, move his legs, or turn over without me moving his legs and hips for him . Basic body functions are not felt so we have set up a timing plan to keep him clean and as tidy as possible. We have community nurses coming to check in and carers that remake his bed each morning but I am doing everything else myself. It seems it takes a few weeks for things like proper supplies so he can pee or a management plan for his bowels ... for now we are muddling along but it is not good. When I raise my concerns that he needs more care, he feels like giving up. He doesn't want to live when he thinks that he may never use his legs again. He is very sad and thinks this is all I will remember. So many physical and emotional needs right now but it is left to me to coordinate each piece of his care ... there seems to be no single point for building a plan or even any understanding of each wheelhouse of care. Today I had a lovely chat with a young man from social supports who called to offer help but he didn't know a thing about what he could provide. Who will build a plan with us and help me find and coordinate the resources we need to make this hurdle manageable?
