This thread has made me quite sad.
When people are unwell, especially when they don’t have a diagnosis or know what might happen next, they need tender, loving care. This includes anticipating and asking what they might need. When you feel unwell it can be a struggle to think clearly and advocate for yourself, you can feel helpless and humiliated, and you don’t want to feel like a burden. You can feel very emotional and quite sorry for yourself. Some ailments and/or meds make this worse.
When I’m looking after a child or adult who’s sick, especially very sick or immobile, at home, I have little chats, offer them things I know they’re likely to need or enjoy, and ask if they need anything else. I keep them company as much as possible, sometimes sitting silently reading while they rest. It can be very comforting to know someone’s there. I also give them privacy, if that’s what they prefer.
To me, this is the basic level of care anyone who’s unwell or incapacitated should expect. They shouldn’t have to shout or organise it themselves. They shouldn’t even have to ask for obvious basics, like water they can stomach.
Of course we can all cope if we have to without any/very little of the above. Sadly, lots of people have to. The OP is. But they shouldn’t be expected to. Or scoffed at if they wish they had it. That’s the difference.