Saturday, November 24, 2018

GUY’S GOTTA TALK ABOUT…Alzheimer’s #20: What I Learned – “Understanding and Responding to Dementia Related Behavior”


Dad’s diagnosis of Alzheimer’s stayed hidden from everyone until I took over the medical administration of my parents in 2015. Once I found out, there was a deafening silence from most of the people I know even though virtually all of them would add, “My _____ had Alzheimer’s…” But there was little help, little beyond people sadly shaking heads. Or horror stories. Lots of those. Even the ones who knew about the disease seemed to have received a gag order from some Central Alzheimer’s Command and did little more than mumble about the experience. Not one to shut up for any known reason, I started this part of my blog…

OK, so it's Saturday. Sorry. Thanksgiving got in the way!

The presentation at the care facility my dad lives in was facilitated by a normal person. He didn’t have any “brilliant answers”; he’d had no “moments of revelation”.

In fact, I could have probably done a better presentation than he did! He was just a normal guy trying to figure out whether or not he wanted to continue his studies in college to get a PhD in his field. In fact, his field of research wasn’t even in the kind of dementia everyone in the room had to deal with in loved ones: dad, wife, husband, residents they were in charge of…we were many and varied. His research had more to do with TBI and dementia than with this inexplicable onset of a disease that few can clearly define and that despite having poured two BILLION dollars into Alzheimer’s research in 2018 ALONE, no one can stem or even turn its whitewashing tide.

At any rate, the discussion was best, but from his presentation I gleaned the following three points:

1) They do not live in this reality, it’s our choice to join them in theirs.
Ouch. I’ve been trying to convince Dad to live in my reality; mostly because I live in the real world. My world is the place where, were he to get the apartment he so craves and talks about, he wouldn’t last a day. At the bare minimum, he would get hopelessly lost the moment I was gone. At least, that’s what I want to think…maybe he’d be just fine.

That’s my biggest problem with living in this reality and visiting him in his. When I’m in his world, I wonder if maybe we put him into memory care too soon. I DO know he’s been in the facility longer than anyone else (even longer than most of the employees!) He’s still alive and toddling about, oblivious to…well, most everything…

By the same token, so MUCH of my energy has gone into fighting that losing battle. I’m not sure I can pretend my mother is still alive when he asks, and it will feel like I’m stringing him along if I tell him, “No problem, Dad. We’ll tour some places soon.” Which I’ve actually been doing for the past couple of years.

2) Assessment.
When he has “odd” behaviors (might be an oxymoron these days. ALL of his behaviors are odd…) look around to see WHO he was with, WHERE he was, WHAT was happening, HOW was he feeling (physically and emotionally). Change the subject, move away from the area, or ask the person to leave. Plan for the future (don’t go to that place, ask that person not to return, don’t do whatever the trigger was). I’ve noticed his worst days are after “big” events – going to doctor or dentist, going out to eat with me, etc.

3) If he’s repeating a request or question, give him a reassuring answer.
This is a weird one for me. What if he asks where his sister, brother-in-law, parents, or wife are? Do I tell him they’re out of town, or just tell him I’m sorry, but they passed away? That’s what I HAVE been doing. But is that right? Don’t know.

If anyone who reads this has insight, I’d be happy to share it in the blog (with your permission, of course!) Here’s a link to a list of 722 articles that came up when I typed in “behaviors”.



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