Struggling to understand dad's POV

4Mickey

Can anyone recommend books or articles that will explain how someone with Alz receives information and what they may or may not understand? I've read Teepa Snow's Understanding the Changing Brain, but I'm looking for less of an illustration of what's scientifically happening in his brain and more of an explanation of how he thinks so that I can understand the best ways to communicate with him.

I would also love as much content or advice as anyone has to offer with creative white lies for the big stuff, like explaining why he needs a care taker coming to his house every day if he wants to continue living at home and telling him that he's moving to an assisted living facility when the time comes. I really struggle to find alternate explanations for these things in the moment.

All in all, I want to do what Teepa Snow says (for him to be at the center of the decision-making regarding his care and to avoid reminding him that he has a terminal illness), but even at his healthiest, he was never a person who would engage in serious or emotional conversations. This has left me constantly trying to discern between what's the disease and what's his personality so that I know how much information he's receiving and what he's just swatting away, which feels potentially useless because at this point, aren't they one in the same? And some things I just don't know how to explain without saying "because you're sick," so I wind up dodging those conversations altogether. That feels unfair to him and as if it's leaving him out of the process. This disease has left my moral compass a little turned around and I could use some words of wisdom about how to communicate with him in a way that's kind, but gets the job done.

Thanks in advance!

M1

Mickey, I read in your post some hope that if you just try hard enough or find the right words, you will get through to your dad and get a rational response back.  False hope.  As others here would say, you've got to get your mind around the fact that he can no longer reason, his brain is broken, his reasoner is broken.  To me, the helpful analogy is with a toddler.  You don't expect a toddler to understand, and unfortunately, that's where your dad is too.  You just have to act in his best interest without expecting participation, cooperation, or consent from him .  Very difficult concept, especially when you're used to looking up to that person as your parent.

jfkoc

I agree with M1. 

The best advice I can share is to get on your father's page. Stay within the "4 corners".

Listen to what he has to say ...the words and the emotions lurking between the lines...and validate/acknowledge his commuication. Naomi Feil is  on your reading list for this. Get her book on validation asap.

Listen, love, be calm and enjoy the time spent. Let him keep his independence and dignity in place as best as possible.

Please do not reason or explain very much. Here is how my husband accepted sommeone in the house. I asked if he thought we couold help someone out who had been laid off. Of course, he replied. He was the one helping...not being helped. 

Please do not discuss facility placement. You need to opereate on a need to know basis and frankly there is not much in the need to know column.

Again, say/do what keeps your father calm and "content". His understanding of the reality of his situation is not helpful to anyone.

harshedbuzz

This piece was most helpful for me.

understanding-the-dementia-experience.pdf (alzconnected.org)

That said, how you approach will depend a great deal on the stage of the disease, his personality and whether he has anosognosia.