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Karsten Asked April 2018

I suppose there is no "normal" for last phase of an ALZ patient?

My dad has had "bad" and "not as bad" days, and I guess that is not abnormal. As mentioned in other threads we moved him from a MC to a SNF on Thursday. Thursday seemed to be one of the better days so I was encouraged. But then yesterday I visited him at SNF and he was downright catonic. He was breathing hard, and when he barely opened his eyes to look at me he almost looked like he was pleading. I asked if he was in pain and I think he grunted a no. The station RN said he had been that way all morning. I asked if he had had anything to drink. The RN agreed he looked very dry. So they tried to get some water, but it was honey thick and the orders had always been nectar thick. I sought out the dietician and she said yes, the orders were honey thick so nothing they could do. It appeared my dad just gurgled out the honey thick. Once again, I called hospice and they straightened that out. I just don't get why orders always get mixed up. Anyway, as mentioned elsewhere, he had lost his partial denture a few days ago and the MC could not find it anywhere. In the evening, my dad was sort of gurgling and my mom reached in and found the partial denture in the back of his mouth. It must have been there for days. I don't know how he functioned at all then. (also upset with the MC, couldn't they have located it after we pointed out it was missing?)


Anyway, to make a long question longer, am wondering if my dads catonic state yesterday could have been from dehydration, complications from the denture in his mouth, or some trauma or exhaustion due to having moved him the day before. I have read that can be an issue. Or it could be just a bad day. Or, and this is what I fear, there obviously will be a last day. While I guess we are never ready for that, I just am not ready for that now. Maybe the selfless thing would be to hope he is liberated from all this. So I guess the main question in all this garble is, Is there a way of knowing whether it is just a bad day or is the last day?


His vitals all seemed good. I don't know if that matters. He seemed to eat fairly well last night, better than a long time. I think the aids at the SNF do a better job of feeding. Maybe he was just starving.


I saw a thread float around where CG said she dreads going to see her LO. At the time, feeling perhaps a bit haughty, I thought, how can you dread that? In a very short time I have become that way myself. I dread the thought of going there today for fear of how he might be.

BarbBrooklyn Apr 2018
Oh Karsten, im so sorrry you are going through this!

In my experience, moving dementia patients is very hard on them. I always think that it wasn't mom's fall at the NH that caused her final decline, it was the two way ambulance trip!

Mom's " vitals" were fine 10 minutes before death, so I don't think of them as an indication.

I drank like a fish during mom's NH days and have just (7 months later) started to rein in my propensity to self medicate. When I talked to my doctor about this a couple months before mom's death, he told me he thought alcohol was a better solution ( at least for me) than a script for a benzo. He's known me for 30 years.

There's a wonderful organization called Moderation Management that you might Want to check out. (((((Hugs))))))

rocketjcat Apr 2018
Karsten, I haven’t sipped a beer in the parking lot (yet), but I do take a shot of pepto bismol! Ha. Then I depend probably a little too much on Kim Crawford when I get home.
Saturday was an unexpectedly pretty good day for Mom after zombie day Friday. Full moon today so no idea what I will find but DH comes with me on Sundays so it takes the pressure off a little to have another set of eyes on her. I hope you’re doing better. One day at a time. Most people have no idea the turmoil we’re going through.

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Karsten Apr 2018
Thanks rocketjcat, sounds like you are in a very similar situation so my prayers for you and your mom as well. Am heading over now . Will bring up this clysis thing if dehydration appears to be an issue.

This sounds bad, and I am typically not a heavy drinker, but there have been a couple days recently where I will down a beer or two in the parking lot before going in to allow me to go in without falling apart if he is not doing well. I suppose a prescribed me of some kind would be better.

rocketjcat Apr 2018
Karsten, I’m hoping you’re having a better day today. I just thought of something regarding dehydration....although moms NH cannot inset a regular IV for hydration, they have inserted a tiny line into her tummy with fluids hanging from a IV stand that they called “clysis”. Its supposed to stay in for 24 hours (or until Mom pulled it out 18 hours later) and did help her. Just a thought if it comes to that.

Shane1124 Apr 2018
Karsten so sorry - I know what a heartache this can be.
That said, let him get acclimated a few more days and if possible try to hydrate him- he may be dehydrated from the move and the denture issue. I’m happy you said the SNF feeds people better. He could have a low blood sugar from the above as well.
The days ahead may be rough but you’ll have to be the strong one again- for your mom, his wife, who undoubtably is suffering as well.
Hang in there. Whatever intake you can get in him may improve his condition.

Eyerishlass Apr 2018
Your dad doesn't sound as if he's in any distress and that's good. You can hang onto that. But there is no way anyone can tell you if it's a bad day or the last day. If only we could know so we can brace ourselves but it doesn't usually work out that way.

Regarding mixed up orders and the right hand not knowing what the left hand is doing is par for the course and very frustrating. As advanced as we are in technology it all still comes down to human error. Like you, I stayed on top of what my dad's orders were so I knew if there was a mix up.

Your dad's dentures worry me. Maybe you or the staff can just pop them in before meals and then remove them after he eats. If your dad can't indicate to anyone that his dentures are clacking around his mouth it's a short trip from the mouth to the throat.

Vitals don't always show the body shutting down. Your hospice provider can give you more accurate indicators to look for however no one person shows all of the indicators that death is imminent. It's very unique to each person. Some people have obvious indicators, some demonstrate none. Some show some indicators. It's not an exact thing.

rocketjcat Apr 2018
I too am getting to dread what I will find when I visit Mom daily. Today is one of those days after a similarly zombie state yesterday. (Possibly the effects of Day 3 on Namenda, possibly the full moon, possibly the cycle, etc). My thoughts are that if I called ahead, and the news is “bad day” my 30 minute drive in would be worse than it already is. I prefer to say a little prayer in the elevator on the way up, for patience, kindness and guidance, and be surprised when I get there. I hope your Dad has a better day today.

polarbear Apr 2018
Karsten - I am sorry you're going through the final and difficult stage of caring. I can understand the rollercoaster of emotions from not knowing if this is your dad's last day.

As for dreading to see him, would calling the nurse and asking how he was before you come so you are prepared make you feel better?

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