Terminal Lucidity

Every situation in this disease can have a variety of outcomes, and all of them end up being common. It's very frustrating how dementia keeps you guessing about every decision. What is good about this forum is that the more we share our experiences, the more confident we are that we're doing the best we can. My mother behaved in a way very similar to your father. She qualified for hospice back in the summer due to changes in eating habits, weight loss, sleeping cycles, and declining communication. This fall, she declined further and started walking around and around the commons area of her MC facility until she reached exhaustion. Then she'd fall or merely lay down where she stopped. The hospice people told me that similar patterns in their experience meant she was nearing the last phases of the disease. One morning, the facility reported that Mom got out of bed herself and didn't fall. She came out of her room and said she was hungry. She was alert and ate a hearty breakfast. That was a week before she died. I visited her on her birthday weekend which was a couple of days later, and all she would take was some yogurt. She had stopped walking. She wanted to get up, to stand, but then without assistance, she'd fall. She stopped communicating, even her word salad was replaced with mumbles and a few sounds. She would occasionally hug me or the staff. She didn't appear to be hurting or struggling emotionally. By midweek, she had stopped eating or drinking anything at all and was only vaguely conscious for short moments during the day. I had broken my ankle on a Tuesday, and when I was finally able to get to her on Thursday, she died while I was holding her hand. Those moments of lucidity are misleading. They are sometimes random and surprising, but they can also be indicators that a decline is on the way. That's been my experience anyway. Enjoy those moments you have with your father as this disease runs its course. I'm not sure my mother knew I was there since she had long ago forgotten who I was, but for me, being there in those late stages as her daughter meant she was still my mother. It helped me be at peace with her passing. It felt like all the second-guessing I had been doing was finally resolved, an inevitable end to all the struggling with this monster of a disease. Try to believe you are doing the right thing no matter what that might be because you are doing everything now with love in your heart.

“Going home” can mean lots of things, it’s not always their residence. I’ve also heard of PWD having lucidity at the end.

I wouldn’t second guess your decision. If he improves, you can always take him off hospice and in the meantime, they can help in many ways.

The lack of predictability is so awful! I will say it sounds like you are doing an incredible job of taking this day by day. That, as Eskay says, is all we can do.

My dad isn’t on hospice (yet) but I’m starting to see so much fluctuation, from him being alert, saying let’s get up, I’m ready for breakfast, to not being able to feed himself an hour later when he’s at the table. It’s so hard to know what’s happening.