I have developed this habit of falling asleep with the television on,
and since that is 90% of the time tuned to MSNBC, that means I wake up
to whatever news they are reporting around 5:30am. And 90% of the time,
the topic is our current White House occupant. Trust and believe, even
if he yawned in an offensive way, Joe Scarborough will take ten minutes
at the top of the six o'clock hour to opine...
Wednesday morning, the topic was the recent Montreal Cognitive Assessment
(MoCA) that the DESPOTUS kept touting as proof of his intelligence and
mental acuity. I had heard some analysis of his test after the interview
he gave with Chris Wallace
on Sunday, so I had already decided not to give it much more thought
until I realized just how harmful this boasting could be based on my own
experience with the test. So I sat down and posted my thoughts on the Audrey's Big Read
page (the page I created a couple of years ago for an Alzheimer's
Association fundraiser). I was still considering whether to post it to
the Busy Black Woman page, but got distracted and then I had to head
over to my parents' house for my Mom's tele-health follow up.
If
you haven't read the original piece, just know that my feelings about
his comments have hardened. I can't shrug off what the President said as
just another example of his depravity and mean-spiritedness. That lets
him off the hook, and quite frankly after four years, we know better
than to expect him to demonstrate any kind of compassion or sensitivity.
We've become so immune to his cruelty that all of those warnings about
normalizing trumpism feel akin to yelling at the screen during a horror
film...
But this piece isn't about him. It is about me
and the journey to this point in my life, this week in July 2020, in the
midst of this pandemic, in the space where the weight of guilt,
sadness, depression, frustration, and everything I have endured for the
past ten years feels heavier than usual.
Here is the
truth about dementia. It isn't just memory loss. It isn't stumbling over
a few words. It isn't just getting older and not remembering faces or
details from the past. It isn't anything like the movies. It isn't funny
like the jokes that make me cringe because if only there was something
funny about watching your mother go from a vibrant, outspoken woman to
being bedridden and mute. It isn't pretty, so no amount of makeup or
fancy clothes can camouflage what you prefer not to see.
Even as I curse the day that man was born, I would never wish Alzheimer's on him. Never.
I
have written about my Mom and our relationship and other aspects of my
life on this blog for years. It is strange to be so emotional over
something that I have lived with for so long, but as I shared on
Facebook, I was in the room with my Mom the second time that cognition
test was administered a year later. I know that when I requested some
kind of neurological evaluation, it was because I was witnessing and
experiencing a version of the woman who raised me that was extreme and
unpredictable. It was my hope that the results of the initial test were
accurate, and that instead of some kind of cognitive decline, my Mom was
just stressed and agitated.
After that first test, she
was very proud that she had done so well. She talked about it for
several days after the fact until it got to the point where it seemed
like the results had been more reassuring to her that all was well. But
all was not well. She was having issues on her job. She had stopped
going to her church. She only drove to specific places. She would
sometimes get disoriented about the time of day. She was hyper-sensitive
about everything.
I began to insist that my Mom needed
a second opinion. She had been adamant that everything was fine, so she
stopped speaking to me. Then one day she changed her mind, so I quickly
made an appointment with a neurologist. When the day arrived, she
greeted me with hostility and agitation. She demanded to know where we
were going, and then spent the entire ride complaining about my driving.
We arrived at the doctor's office and she sat across from me, glaring
in red-hot anger, as if I was turning her in for having committed a
crime. Inside the examination room, she relaxed a bit during the small
talk, but as soon as the doctor began to take notes and asked what she
felt were insulting questions, she reverted back to anger. I was so
anxious that I posted a plea on my Facebook page asking for prayer. And I
remember that because within a few minutes, she calmed down to
sufficiently complete the test. I was still a wreck, but at least I
walked out of there with some tangible next steps for determining what
was happening with her.
So when I hear the DESPOTUS
brag about his results, it upset me because it caused those memories to
resurface. Where we are now is a far cry away from that very intense
encounter with that neurologist. I worry that too many people will
accept his braggadocio and assume that this test proves the opposite of
what so many of us who live with dementia know. Mind you, I am not a
neurologist, a psychiatrist, a psychotherapist, or a Republican.
A
few weeks later, I was in the room with my Mom for her first MRI that
would detect if there was damage in her brain. I was there when we got
the results. I was there when she began to experience sun-downing. I was
there when she didn't seem to remember that we had just finished
Christmas shopping. I was not there a few months later when she walked
out of a restaurant in Georgetown and disappeared into the night. But I
was there when she was brought back home by the police at 5am, after she
turned up across town at one of the dorms at Howard University. I was
there when the attending physician in the ER pulled me aside last month
to discuss DNRs and advanced directives and only gave me a few moments
to provide definitive answers.
It isn't fair game in
politics or in real life to make jokes about someone's cognitive
abilities. It isn't ironic that this President has submitted to this
test multiple times with the inference being drawn that he's well--not
that his handlers are terrified that he might not be. Because it isn't a
routine evaluation given to someone over the age of 60 although that is
the lie I begged the doctor to tell my Mom. The lie that the trumpet has been told and keeps telling shouldn't be a comfort to anyone...it's a stall tactic.
If
you're reading this and are assuming that since I align with an
opposing political ideology, my intention is to deflect from the gaffes
and misspoken statements made by the presumptive Democratic nominee,
you're wrong. If he demonstrated any tangible signs of dementia I would
be similarly alarmed. But I won't discuss him now because this piece
isn't about him either. This is about me and how maybe my friend who
thinks I need to write a book about my experiences as a caregiver is
right.
As I was still working on this draft, I happened upon an episode of ER, The Peace of Wild Things,
with Alan Alda guest starring as an aging surgeon who was showing early
signs of dementia. How ironic, I thought, that this would air now given
what I was writing (and how I haven't watched a full episode of ER
in years). How accurate too, since it is probably one of the more
honest depictions of that moment of reckoning I had in that
neurologist's office nine years ago. It was one of the most
gut-wrenching experiences of my life, to not only hear such devastating
news, but to watch someone process how they would or would not accept
the truth. On TV, the character doesn't have a choice.
Thus,
if I had so much difficulty hearing and telling someone I love such
news, I keep wondering, does anybody love this President? Is there
anyone in his personal circle of family and sycophants who understands
that if there is something going on, this is a progressive disease? How
cynical it would be to let this drag on...and terrifying?
It
was not until after we received my Mom's diagnosis that things began to
make sense to me: why she had stopped going to church; why she refused
to explain the body damage we discovered to her car; and why she had
written out the recipe for Belgian waffles and posted it on the
refrigerator. Unfortunately, not everyone in the family came to that
same realization, and it took her disappearance on a trip to a hair
appointment five minutes away from the house to make clear that she was
not well. We had to disconnect her car battery to keep her from driving.
Other
than concern for the country, my selfish reason for hoping that this
test hasn't foretold anything about this President's cognitive function
is that I don't want to feel any sympathy for him. I don't want there to
be any justification or mitigation for his maleficence. He doesn't
deserve the benefit of any revisionist perspective to suggest that the
damage this man has wrought stemmed from the same illness that has
ravaged my Mom and so many others. Dementia doesn't discriminate so
people from all walks of life and of varying character are susceptible.
As tempting as it is to wish that there is a such thing as karma, it
should have caught up to him long before he got elected, so to wish it
on him now defeats the purpose (multiple bankruptcies and divorces don't
count).
He passed the cognition test this time, but does it matter if he always fails at being a decent human being?
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