My mom has been in a nursing home for 13 years. She is paralyzed on one side and barely functioning on the other. She no longer speaks.
About 8 months ago, she started a slow decline and was put on palliative care. Then she started eating again and even seemed more upbeat. She is now on hospice care, as she began to be less and less responsive and not eating or drinking much. I've noticed periods of what looks like trying to catch her breath. She's always looking at the ceiling and pointing or reaching.
Her vitals are normal, but her behavior and agitation makes me wonder. Yesterday she had a sudden change in appetite and ate all her food. This has been such an emotional rollercoaster. One minute she looks completely out of it and the next she seems to be managing.
Some people have terrible quality of life, but are kept going just for the money they receive at the facility, and other people are easily given up on, when they still want to live. Because, someone has decided they are not worth the trouble or money.
Elderly care is very complicated. Every case and person is a different situation.
Best of luck to you.
There have been many videos I have seen where a person, nearing end of life does point and reach for something or perhaps someone that only they see. I would not call this "agitation". If the person does not seem to be upset by these movements or "visions?" It is not something to medicate for.
The breathing may be "normal" for the stage she is in. Search Cheyne-Stokes breating and or Angonal breathing.
You can also check YouTube for Hospice Nurse Julie and watch some of her videos on these topics.
It's good to share with people who have witnessed or gone or going through this. It is a lonely road being a caregiver.
Mom eating could be her rallying. This happens in the final stage. A Hospice nurse should be able to tell you when her body starts to shut down. She will not be able to swallow. No more food or water will be given once that happens. Giving food is more harmful than good.
We have been telling everyone do not force the food or drinks. She eats but very little and slowly. Sometimes I'm afraid the staff at the NH forces her to drink the shakes even though they were told not to.
You are absolutely correct that for family standing witness and waiting for the peace of a final ending, this is an emotional roller coaster. I, as an old retired RN, have seen many through to the end, and I consider it in my own mind the trip of a lifetime. The looking toward the ceiling staring you see may be hallucinations. There is an old saying "He turned his face to the wall". Eventually, if we live long enough, we separate even from those we love, and are on another journey all our own, one that people don't come back from with long stories and pictures, one that we find only at our own last days.