Monday, July 27, 2020

A Test of Character

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'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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