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”.
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.
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.
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”.
I’ll be skimming
it soon: https://www.alz.org/search?searchtext=behaviors
Resource: https://www.alz.org/
