I do t really know where to start but I just found this thread and it feels a safe space to say all the things I can’t in the daytime.
dad had treatment withdrawn in late November after several years of chemo, whilst he was getting much tireder and had been declining for months everything plummeted just before Xmas. The dstrict nurses and others swing into action to give him pain relief but most of the day and night it’s just me and mum and it’s all quite scary and distressing as we don’t know how to help him. In the midst of awfulness he will suddenly have a burst of normal get up shower and get dressed but then everything plummets again. He can get very wobbly on foot but is desperate to maintain some independence which gets him in trouble and we can’t always lift him when he falls. His meds for pain relief and the related treat of constipation have been doubled and now he is sleeping 18 hours a day and in pain when awake. We just feel so overwhelmed - I’ve moved up north to help and am trying to work from home as well but just keeping him stable seems to take most of the day. My mum is in her late 70s has mobility issues and is very anxious and upset to the point I worry this pressure will take her as well. Dad adamant he doesn’t want to go to hospital and now has ruled out the hospice ( he seems to have decided they are the same thing) and I honestly don’t know how we keep him at home and pain free without breaking him and ourselves. And we feel terrible for thinking this and for letting him down. He keeps beating the predicted timescales and now we are being told days weeks or maybe months and everyone is exhausted. It feels cruel and I’m just so very very sad. Sorry for the long ramble but it’s 2am and I am just in a panic whilst knowing I have to be up again in a few hours to give him more meds. When I get some time on my own I just cry which is no use to anyone. It’s the not knowing a timescale that seems to make it even harder
