We were told two weeks ago that my LO was in end-phase, but the trouble is we have no idea what this really means and the nurses in the care home are just so vague. She has become bed bound, and is unable to move around in bed. She has absolutely no desire to get out of bed or even stay awake. Every time we visit she is sleeping-she might wake for a few minutes but just stares. She has no idea who we are and is unable to speak, she mutters a few noises and tries to form words but is unable to most of the time. It is so heartbreaking watching her just existing. My LO is now 91, is double incontinent, has problems swallowing so her water has a thickener put into it as otherwise the fluid just gets lodged in her throat and also has tachycardia. She does still eat a few mouthfuls of liquidised food some days. Yesterday we were told that she had been calling for her dead husband and thought that her agitation might indicate pain, so they have now put her on a transdermal opioid patch to manage pain. Her other medication has been withdrawn. The trouble is, we live miles and miles away and have no idea how close she is to fading, every weekend we travel the distance to be with her and watch her deteriorate before our eyes. The nurses give us no real indication as to whether death is imminent or whether we are just entering another long cruel phase of this horrific disease and my family are finding it unbearable as we don’t want her to be alone, but life, looking after children and work will not allow us to be there as much as we’d like to. She is turned regularly but has started to develop soars on her heels and back. I’m sure some of you on here have lived this final stage and have a better idea as to the pattern of deterioration and what we should be expecting over the next months-weeks just so we can be both mentally and physically (and spiritually) prepared. Thanks in advance.