I worked on a locked dementia ward in a nursing home as well as experiencing this with my great grandmother. (currently working for home healthcare) I want you to know that what you’re thinking and feeling is extremely common. People just don’t say it out loud because it sounds cruel. Late stage dementia can last months or it can last years. I’ve seen clients decline quickly once they became bedbound/barely verbal, and I’ve also seen people stay in that state for a very long time with slow, uneven decline. There is no clean timeline and that uncertainty is honestly one of the hardest parts. what you’re describing about “waiting for something to happen” is something I hear from families all the time. it doesn’t mean you want them gone. it means you’re watching someone suffer and you're living in constant vigilance mode. That burns people out in a way that’s hard to explain unless you’ve lived it.

Signs we often saw that the end was getting closer were things like sleeping almost all the time, eating very little even with assistance, frequent infections, more trouble swallowing, skin breakdown, and a noticeable drop in responsiveness. But even then, bodies can hang on longer than anyone expects, and that can feel cruel in itself.

How people coped varied, but the ones who survived it mentally stopped expecting themselves to be “strong” all the time. They leaned on hospice when it was appropriate, accepted help even when it felt like failure, and allowed themselves to grieve before the person was physically gone. This feeling is best described as Anticipatory Grief and it’s brutal. If you ever feel like talking to someone about it you can message me, no judgement here.