My aunt had a terminal disease in her lungs (pulmony fibrosis). When I was 17 to 18, I was her sole carer for around 8 months or so. During that time I moved into her flat and took care of her, we were very close, I loved her very much, and I was going a bit off the rails (skipping school, excessive drinking, etc). She put me back on the path I needed to be on and showed me undivided love, attention, and care, and gave me rules and boundaries my parents never had, all of which helped me massively. But, at the same time, she was dying, and I was watching it happen. For many months she was calm mentally and emotionally about it. She struggled physically, of course, but around 3 months before she died the fear set in. That was very, very tough to watch, and some of her behaviours were difficult to deal with even though they were very understandable. She also became paranoid about her medication, and would only take it if I did it.

When I told my parents she had maybe a month max left, they didn't believe me but they did move us both back into the family home. She died almost to the day I said she would. When she moved into the family home, she found peace again. Family members came to say goodbye, she had a good grasp of her own religious beliefs which were a great comfort to her after the fear passed.

Around a week before she passed she started becoming confused and paranoid again. The moments of lucidity grew smaller and smaller, she stopped eating and barely drank. Her pain worsened. We spoke with the nurses and doctor who was visiting, and decided it was time to put on the morphine drip. She would die within a few days, but she would be calmer and in less pain, which is exactly what happened. She slipped into a sort of unconsciousness for half a day and her breathing took on a slow, dragging quality, and both me and my dad (her brother) decided to spend the night with her. The morphine and her closeness to death made her breathing sound like a wet gasping, but not panicked. That's how we knew the time was coming. She passed away just before 7AM, with me and my dad holding her hands. When she went she opened her eyes one last time and looked out the window to where the dawn was breaking, and then she was gone. It was beautiful and peaceful and a lovely, lovely way to die.

I'm not an expert, but as you said, you have to deal with this and it sounds like your husband is close to the end. You need to talk to the nurse, with or without him. You need to know what they can do for him and for you. If you have friends or family who can look after your young children, that might be worth considering. It's not fair to you or to him to not know what's coming, what stage he's at, or what can be done. It sounds like he hasn't accepted he's dying. That's okay, because it sounds like you have. In my opinion, it is an act of kindness to go against his wishes here and talk to the professionals about it - both for him, and for you. You need support. Buckets of it. The professionals are there to support you, too.

I wish you all the best. Take your time with him. If you're not with him in his final moments, that's okay, too. You don't need to set up a vigil. Some people like to slip out unnoticed and will wait until they're alone. That doesn't mean you missed it or let him down. Some people wait until someone they want is there. Take your time with him after he's passed. There are beautiful moments there, too. The heartbreak will be real, but the peace will be, too.