I want to share a few things I learned from caring from my mother in her last days with home hospice.
During her last few days, Mom didn't want anyone from hospice to come in. She didn't feel well enough to be bathed and she didn't want any medical personnel taking her vitals or poking and prodding her. We acceded to her request, but after the fact I wish I'd done some things differently.
My Mom's hospice has a service called Crisis Care, and if I had to do it over I would have called them in a day or two before her death. They could have done more to keep her comfortable than we could do without their help. We saw the signs that she was dying but we didn't foresee how rough it was going to be for her. We expected her to just weaken and fade away, but that's not what happened.
What happened was that Mom grew increasingly uncomfortable those last few days. She ceased being able to swallow, although she was constantly thirsty. Worse, she became unable to manage her own secretions, and she was coughing and choking repeatedly. We thought of trying to suction her throat, but I read online that that's uncomfortable for the patient and that it's ineffective because the secretions come right back. There are medications that can be provided (in patch form, I believe) to control the secretions so the person can breathe more easily.
Also, about 2 days before she died, Mom seemed to be more having more pain more often, and we needed to increase her dose of liquid morphine. Of course it tastes awful and I don't know how much she actually absorbed (it can be absorbed without swallowing). I would have tried to get her on a drip of morphine when her pain started getting bad, assuming crisis care would have provided that, or fentanyl patches, something that would have offered continuous relief without having to put something yucky in her mouth.
I would say if you have the option, call in crisis care when the loved one stops taking liquids (if they can't swallow liquids, they can't clear stuff out of their throat either) or when you start feeling that the pain medication prescribed just isn't enough. My sister and I agreed that we weren't doing enough on our own to make Mom as comfortable as possible, and decided that if she were still alive Saturday morning, we would call in crisis care then. We were just done with watching her obvious distress. Fortunately or not, she died in the early hours of that morning. If I had known what to expect though, I think we could have made those final hours considerabley more comfortable for her.
Hope my experience helps someone else on the same journey. Carla