I know I'm far from the only one that's frustrated as all get out by this disease, all the changes, and not knowing what's coming next. We know that the disease is progressing, and it seems like it's moving faster, but it's hard to know for sure.
We moved dad into assisted living in a retirement residence (Ontario, Canada) 4 months ago, which has been a learning experience. Mom's said that in some ways it's actually harder having him there than at home because we're always having to go through several layers of bureaucracy or working through other people to get things done. Not to mention that the home he lives in isn't staffed enough, so often there are PSWs from an agency who don't know dad or how to help him, so you can imagine how well that goes at times. The regular staff are great, just to be clear.
Back to the now.
Dad's in bed almost all the time, generally only in his wheelchair for meals. He's having such troubles with his eyes, and despite the drops the doctor prescribed, one eye gets irritated and stays inflamed for weeks. His other eyelid closes involuntarily, but neither seems to close completely some of the time. He's on a mostly puréed diet, but now he either doesn't have the energy or brain-muscle connection to lift the spoon -it's awful to watch. The weight loss has been significant. He also more often kind of checks out - eyes open, looking ahead, but not responding to verbal or physical stimuli. Speech has mostly disappeared.
There are just so many things happening, and we're always trying to figure out ways to get things done. I did just talk with a case coordinator at the LHIN, and she said that she will try to get him some more hours, or work with his hours, so he could get help with feeding at dinners. She also said that we definitely could bring dad home when we know that he's closer to dying, which I think he'd prefer, but how do we know when he's at that stage?
Oh, and has anyone ever used a moist heat eye compress (Bruden or Thermalon are two brands I've seen)? Wondering if that might help his eyes from getting so dry.
Thanks for listening.