Both of my parents died from dementia. More specifically, they died from complications brought about by the dementia. This insidious disease doesn't kill the body, but it shuts down signals to other vital organs, which then kills the body. I think both died from some version of kidney/renal failure. By the time each passed, the disease had progressed to a point where it didn't really matter which vital organ function failed. I'm not sure who was relieved more when they died: Each of my parents, or those of us left to witness their decline.I was rather clueless about the disease when Dad was diagnosed. Unfortunately, he was diagnosed after the disease had significantly progressed. We were made to feel that, "if only" he had been diagnosed sooner, maybe there would be more that could be done to intervene. So when Mom began to display different yet similar cognitive decline, I was quick to get her into her primary care physician. Nobody wanted the diagnosis, but I didn't want to be told I waited too long with her, as I had with Dad.
Dementia is a slippery slope. Cognitive decline is inherent with aging, so it is difficult to discern between what is "normal" and when the decline should be of concern. Mom was given "The Dementia Test" - - for lack of a better reference. She was asked the day of the week, what city she lived in, who the President is and to count backward from 100 by 7's. Once you make it to 58, you are allowed to stop. Midway thru this test, the examiner lists five random objects and tells the patient they will be asked to recall these five objects later in the test. The first time Mom was given the test, she struggled with the counting backward and recalling all five objects. Yet she scored high enough on this first test for us to be told there were no red flags. That her occasional forgetfulness and confusion were right on track for her age (80).
A couple of years, and more instances of forgetting later, she was administered her second Dementia Test. It was the exact same questions asked before. But, this time she scored higher than she did two years previous. "How is this possible?" I asked her doctor. She clearly was starting to slip in my mind's eye, yet this rudimentary test did not support my observations. "Highly educated people such as your mother," the doctor explained, "are frequently able to pass this test. They are able to disguise their dementia for longer periods of time." At my insistence that SOMETHING be done, Mom was subjected to an MRI. Mom hated the MRI process: The confined space; The loud banging and clanging. And I felt awful for insisting she have one, but I was desperate to find help for her. I did not want the regret and guilt I had for my father's un-monitored decline to be duplicated with my mother's decline.
The scan was summarized as having normal amount of plaque build up for a woman of her age. Normal? Really? We all KNEW, KNEW, KNEW something was up with Mom, but we were given no tools to address. Two years later, and another try at the Dementia Test indicated that now at 84 that the disease was probably present. We tried to keep her in her own apartment for as long as possible before moving her and her cat to assisted living. A year after moving into assisted living, her decline was so great that she lost the ability to keep her beloved cat with her. We basically sat back and watched over the next seven years this disease consume my mothers wit, intelligence and insight. She was reduced to a confused woman with only three or four stories about her life that she shared over and over (and over) again to anyone who might listen. When she finally died at the age of 92, most of her grandchildren and all of her great grandchildren had no idea what an extraordinary and vibrant woman she once was. Such is the true pain of this disease.
This is a legacy haunts me and my sisters. When one of us can't recall something or gets confused, we quietly confess to one another, or try to joke about how "it's" probably starting to happen to us now. I decided to take the proverbial bull by its horns, and get a handle on my own cognitive status. I wanted to have a game plan for how to address should the disease be present in me. I wanted to know what all they had learned about this disease in the twenty some years since initially navigating its' waters with Dad and then later, with Mom. I made an appointment with a neurologist. As I had no real symptoms or pressing brain concerns, I was given an appointment four months into the future. I'd like to say I almost forgot about this appointment by the time the date finally came along, but my truth is, I thought about this appointment nearly every single day since making it.
Ironically, the day of my appointment, I drove to the wrong office location. I
The five objects I was asked to remember were: Face-Velvet-Church-Daisy-Red. I am pretty sure these are the same five objects Mom was asked to recall back in 2002. And, between you and me, I have been practicing counting backward by 7's from 100 for many years now. When the test was done, the neurologist said I scored a perfect 30 out of 30 score. "Good baseline data," she said. The neurologist commended me for already doing all the anecdotal things we are told to do to keep our brains pliable. I practice yoga, I (try to) learn new skills. I socialize and stay active.
And nothing else. The appointment was over.
In the nearly twenty years since first having Mom take this test, absolutely nothing has advanced in how we diagnose, or stave off the effects of dementia. NOTHING.
Face-Velvet-Church-Daisy-Red is my new mantra.
My plan is to fake them out for a few years, just like Mom did.
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