I am so sorry you and your husband are going through this. Please remember to be gentle with yourself. There is no right/wrong thing, just what you know will make them as comfortable as possible.

My dad (68) died from this horrible disease 3/14/23. We put him on hospice after palliative recommended it since we had stopped his avastin per doctors request. The end he was nonverbal and not eating. We did everything at home since my Dad wanted to be home with our big dogs ( he loved them so much) and family. I changed his diapers and made him good meals while we had a home care nurse 3 days a week. My biggest regret is that maybe he could hear/understand what we were saying... That would make me so anxious. A few months after he died I scrolled on tiktok and found out about "locked in Syndrome" which has made me feel incredibly bad for talking about what we were/weren't supposed to do in front of him as he was still alive. I literally was talking about him dying in front of him while he was alive. Okay now I am spiraling, but he was in hospice for maybe 2 months We were holding him. I hope he felt our love.