Terminal Lucidity

Klako

My dad fell two months ago. Seemed to have accelerated Alzheimer’s. He pretty much stopped eating since and recently was only drinking very little. This past week he was admitted to hospital with severe dehydration. The dehydration caused his heart rate to accelerate to 130-140 and blood pressure to be lower at 95/60. I made the move to hospice because when they gave home medicine to regulate heart rate that affected blood pressure and if he is not going to drink to keep himself hydrated then it would be a losing battle with the heart. We have withdrawn all medicine and hospice was in yesterday and feels at the rate his heart is beating he should pass in 1-2 weeks. 

Yesterday and today he has been up, alert and today it seems and ate a bit and drank. Yesterday he ate a spoonful of pudding and and two spoonfuls of ice cream and asked if we were going home? 

He also has stage 5 kidney failure due to the dehydration and has a terrible time swallowing. 

I am totally second guessing my decision. Anyone have any insight or experiences like this? What was the outcome?

ESkayP

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.

cdgbdr

You have done the right thing. Conditions change for short periods of time. Know that hospice will make sure he's comfortable. Unfortunately, we can't control this.

April23

“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.

Klako

Thank you for all of your support! Can I just say (as we all do) I HATE this disease! There is no prediction from day to day as what you will get. Three days ago we were all around a hospital bed thinking the end is near now he is up in his wheelchair and asking about people he hasn’t seen in 30+ years! We will see what tomorrow brings but we take what we can get and let God guide our journey. Thank you all again! This forum has been such a blessing to me.

Anonymousjpl123

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.

harshedbuzz

@Klako

This is difficult stuff. You're doing a tremendous job of rolling with the day-to-day changes.

Two thoughts about the later stages—

There is a notion that some people, even those seemingly unaware of their surroundings, will not pass if specific people are in the room with them. Sometimes it seems they prefer to be alone even. When my MIL was at end of life, her oldest son sat a bedside vigil for several days before his wife coaxed him to go home for a shower and nap. He didn't make it out of the parking lot before she took her last breath. A friend had the same with her dad.

I was told that sometimes when death is imminent, a person will talk about or even "see" people who have passed before them. Some even describe this as the souls of loved ones coming for them. I never believed in this until my own dad died. I visited in the afternoon he died and he told me all about a nice visit he'd had with my sister— she was busy with the kids and working hard having been recently promoted and that she promised to see more of him going forward. My sister had been dead 30 years. It freaked me out enough that I called my mom and his brother to suggest visiting "soon".

Hugs to you during this time.
HB

April23

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.

psg712

Ditto with the fluctuations in ability and communication. Some of it is predictable with time of day, but it can still be a flip of a coin as to whether or not my mom can interact much.