My husband is moving into hospice care at home now, rather than any more treatment. We don't have a prognosis so far beyond "this cancer will be the cause of [his] demise". Some days he seems very ill, doesn't leave bed, and it feels like the end could be just around the corner. Other days he gets up and dressed and sits downstairs and it feels like we might have years at this stage, just steadily reducing in energy, until and emergency intervenes.
My mind is racing through practicalities like should we adapt our utility room to get a downstairs shower room, should I move a sofa out of the lounge and set up a day bed or get a riser-recliner chair so he can come down and watch TV... then I stop short and think, will he be around long enough for me to make any of these changes in time for him to use them?
I don't have much get up and go myself these days, although we are only just in our 50s. I'm at a loss where to direct the energy I can muster, to help him make the best of his last few months/years. It doesn't help that he doesn't want to talk about these things from an emotional point of view, and the disease has also damaged his speech and hearing, so it is actually physically difficult to hold a conversation (certainly not a sensitive one) since everything has to be shouted and repeated!
Just feeling stuck / in limbo. I know I'm going to have to ask the consultant for some sort of prognosis, although I really don't think my husband wants to know - if they say weeks I think he will despair.
Thank you for listening to my ramblings.
