Everyone is at least informally aware of Alzheimer’s disease. It is when old people start forgetting things, to oversimplify the matter. You may have even heard of World Alzheimer’s Day which is Sept. 21.
Very sad — maybe good for a laugh or two, depending on how dark the crowd’s humor is.
It is important to read the room before committing to that bit, but it is generally socially acceptable to make a quick joke on the subject and discard the thought immediately.
But do you really know what you are joking about? Have you really looked into that void? Do you feel comfortable making jokes about some of the worst aspects of the human experience? Does tragedy make you giggle?
My mother died of early-onset Alzheimer’s in 2016. It was tragic and heartbreaking, and I miss her every day, but I say this to illustrate that I have looked into that void. I can unequivocally say the jokes are too bland and the jokers too ignorant to make them worthwhile.
Alzheimer’s and other forms of dementia killed over 120,000 people in 2019, just in the United States. Another six million are living with the disease.
The disease is sometimes referred to as “the long goodbye.”
One of the reasons for this is because people living with Alzheimer’s forget everything. They forget friends, spouses, children and even their own name.
The other reason is because those loved ones get the uniquely cruel experience of watching their parents, grandparents or siblings slowly deteriorate into strangers. Then, to add insult to injury, they get to watch those strangers decline into people who have forgotten how to eat, how to sit up and how to live.
I want to emphasize that even in these stages of the disease, these people are, first and foremost, people. People who were stripped of one of the most basic (and one of the few) worldly joys reserved for the elderly: the ability to look back on a life well lived.
And the people they leave behind? They are stripped of family and friends. Your mother becomes a memory you cling to like a life preserver, desperately hoping this too does not leave you.
The purpose of World Alzheimer’s Day is to raise awareness of dementia and the people suffering from it. To raise awareness of the disease that affects nearly half of seniors by the time they die. A disease which is expected to affect 13 million people worldwide by 2050.
And, importantly, a disease which heeds no creed or borders, which cannot be bribed and affects indiscriminately, a disease which has no cure. Odds are, you or someone you know has or will have an intimate and terrible knowledge of the disease.
Until you have looked into your mother’s eyes and seen that she has not simply forgotten your name, she has forgotten who you are, she has forgotten her only son, you do not get to make jokes.
Until you realize that the memories of her playing with her food and encouraging you to do the same, the memories of playing under her desk at the library have been superseded by memories of her crying at dinner and wandering out of the house, you do not get to operate in blissful ignorance.
Until you realize that years of her life were robbed from her, and in turn from you, that you will never get to meet your mother, as an adult, that she will never know the person you became, you cannot understand this disease.
But you can educate yourself. You can be better.