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, let’s begin
where I left off: “As I often did when exploring my wife’s breast cancer, I
pulled up a recent journal article and I’ll interpret what it says,
“Neuropsychiatric symptoms (NPSs) are characterized by a marked interindividual
variability. Their prevalence and severity change over the course of the
disease. Moreover, multiple interacting variables and pathophysiological
mechanisms may influence their occurrence and phenotypic expression. These
aspects have been frequently hindering the application of standardized clinical
and analytic approaches to NPS, as well as the identification of targeted
pharmacological interventions.”
In essence, the
authors are telling me that there are so many things that go into how an
Alzheimer’s patient experiences sundowning, that there IS no standard treatment
– because there is no “normal” expression of the disease. Because it’s so
highly individualistic, “…the sundown syndrome has so far drawn limited
clinical and scientific interest compared to other specific NPS”.
Wikipedia, that fount
of folk wisdom, has a brief article that offers nothing. So what I usually do
is follow the source links at the bottom of the article. Sometimes they’re more
helpful. This one from the Mayo Clinic website was…interesting: “The term
"sundowning" refers to a state of confusion occurring in the late
afternoon and spanning into the night. Sundowning can cause a variety of
behaviors, such as confusion, anxiety, aggression or ignoring directions.
Sundowning can also lead to pacing or wandering. Sundowning isn't a disease,
but a group of symptoms that occur at a specific time of the day that may
affect people with dementia, such as Alzheimer's disease. The exact cause of
this behavior is unknown.”
So, basically no
one knows anything about sundowning and are reduced to making highly educated
guesses.
With such
incredibly helpful hints, let me share what I do: I joke.
I know not
everyone finds Alzheimer’s funny; nor do they find sundowning funny. But my dad’s
always been a funny man. He loves a good joke. My mom loved a good joke, too.
Puns were great. Practical jokes were better. All of my brothers and sisters –
as well as their spouses, kids, kids-in-law, and grandkids have great senses of
humor.
My family likes to
laugh (and sing together, but that’s another story, maybe).
That’s how I work
with Dad’s condition. That’s how I deal with sundowning. When he calls, he’s
usually very agitated, upset, or just looking for his father, mother, sister,
brother-in-law, or my mom. Whichever one it is, I usually ask him if he
remembers where they are. Ninety percent of the time he does and he’ll give
this little laugh; like he knows he’s being foolish but can’t help it. I
suppose it’s nervous laughter or something like that – playing the jester to
deflect the feeling of being an idiot. THAT is a feeling I am completely familiar
with! In my work as a school counselor, I am often wrong. The only way to deal
with the embarrassment is to make a joke and deflect the scorn to my
foolishness.
I musts have
gotten that behavior from someone and lately it’s become clear that I got it
from Dad.
At any rate, I
make a joke like, “Well, Dad. You know Mom passes away a year ago.”
[little laugh] “Yeah.
I know we talked about it. But does she have a phone number?”
“If she did, I
think it would be pretty creepy calling her, don’t you think? Maybe you could
wait until Halloween.”
He’ll laugh then
and go on about how he knows that. When he asks, “Have you heard from Mom
lately?”
I’ll say, “I haven’t
had a chance to have a séance this week. Is there something you want me to tell
her when we get in touch with the higher spirits?”
He’ll laugh again,
and we move on.
A tiny section of
a book I read on dealing with people who have Alzheimer’s became the foundation
of everything I do with my dad these days. It talked about how we can no longer
make memories together. Rather, I work to create Moments with Dad – with any person
with Alzheimer’s or dementia, in fact. Dad won’t remember clearly that we went
to Cold Stone Creamery last Tuesday night – but then he doesn’t remember
falling down a month ago, either. As he ages, maybe there is an aspect of
Alzheimer’s that is a GOOD thing? It’s a weird concept. But then, this has been
a weird journey…
Later.
