Almost every month or few I hear of yet another someone who’s parent, uncle or aunt got diagnosed with some form of Dementia, of which my own mother, her older sister and brother has had for years now.
Although Dementia is a disorder while Alzheimer’s is actually a specific disease under the bigger umbrella of Dementia; I will use both terms interchangeably for the remainder of this post. (Read more here)
Let me describe what Alzahimer’s is for me to those of you who never experienced a loved one with this illness (hope you never will!)
Alzahimer’s is not only about losing memories, or even cognitive skills, a patient of this disease over years lose who they were at some point in their life and because little can be found out on the thoughts that go inside their degenerating brain at any point, no one can tell you the “patient experience” beyond the early stages of the disease, what you get is the caregiver’s observations. Even doctors lose interest and stop doing scans or ESGs after you get the advanced level assessment.
So why do people get this disease? Some say it’s a gene gone wrong, some say it’s Type 3 diabetes, some say it’s the overuse of some types of drugs, some say other things, a study after a study and a clinical trial after the other, maybe one day in the next 10 or 20 years a cure or preventative meds, solid to-dos and to-not-dos will be available. I hope.
As a caregiver for a mother with dementia and once a caregiver of a father dying from cancer, I can share with you this with certainty, the experience is worlds apart. In a simple simulation, asking my father how he was feeling on a particular day got me enough answers able to help him make a decision of what to do on that day, while with mom the typical answer was “I am feeling great, I don’t have any pain and I have no complains, so why do you want to take me to the doctor??!!” Mind you that was the case in the first two years only, after that I was left with the observations of her nurse and my own to make a decision.
Being around my mother, at times I wonder, what she’s trying to say to me? What is she thinking when I ask her, “how are you today?” When she eats Mansaf, a dish she used to hate and now eats with appetite. I wonder, what’s the meaning of the soul within the realm of this disease? was there ever a soul or was it always plain biology? If the soul leaves the body only at death, where did the soul of those Alzheimer’s patients go? What is a soul without some form of coherent thoughts, memories and awareness of where they are?
Beyond the disparity being the state of affairs today, I wonder if this disease relates to the rising life expectancy of the world’s population…could it be nature’s way of dealing with this?
Is the rising expectancy the anomaly here or is it Alzahimer’s, the disease? Or did the magnitude of our collective accomplishments as a specie over the past 10s of thousands of years -which we attribute to our fantastic brain size and it’s capabilities is what’s casing this disease? Is it nature’s way of fighting back against our prominence over the planet and all other species in it? Hitting us on what we value the most, our precious brains?
I like to believe almighty nature is not that intentional in comparison to us humans. I think of those scientists somewhere trying to beat death and its finality, I think of all those healthy diet plans, habits, the move-more movement and their promised land.
Makes me wonder, will our awareness of the terrifying threat of dementia eventually help us surpass the nature of this epidemic?
My own fragility to how close this disease is to me forces me to be hopeful we will.