As a TV reporter, I thought I had seen it all. In Philadelphia I covered every local story imaginable, and travelled for hurricanes, political conventions, a presidential impeachment and the Grammys.
At MSNBC I anchored brief news updates and extended breaking news, including live coverage of an impending storm called Katrina.
But every event I’ve covered, every story I’ve told, pales in comparison to the one I witnessed in my own backyard: the horrors of Alzheimer’s disease.
My once vibrant mother had Early Onset Alzheimer’s, an aggressive form of the disease that hits before the age of 65, often in your 40’s and 50’s. We believe my mother started showing symptoms in her 50’s. This year, while only in her 60’s, she died from this horrific disease.
I use the word “horrific”, but the truth is, there is no word sufficient to describe the way Alzheimer’s ravages a human being and human mind, and the exhausting, heart-wrenching journey loved ones are on as they struggle to care for someone who no longer knows them.
Like many Americans, I quickly realized how much I didn’t know about Alzheimer’s. Even though my grandfather had it, I was not prepared for how it would hit my mother.
A friend who went through it told us, “It comes at you with the speed and force of a freight train, and there’s nothing you can do to stop it.”
How true. I learned Alzheimer’s is much more than memory loss. Forgetfulness is just the beginning, the earliest symptoms. The disease slowly kills brain cells, robbing the victim of their most basic functions and abilities.
So my mother, married 48 years with 6 children and even more grandchildren, didn’t know her own husband. She didn’t think she ever had children. Her large, loving family brought little comfort to her since she rarely recognized them.
But more than that, we saw a highly educated, lifelong elementary school teacher lose the ability to follow simple instructions.
She didn’t understand the difference between left and right, up and down.
She was confused by a toothbrush, used it to brush her hair.
She was unsure how to eat, how to even pick up a sandwich.
She lived in a world that became confusing and foreign to her, which led to uncharacteristic bouts of anger and suspicion.
She needed constant supervision. She was only 68 years old.
Women my mother’s age now anchor evening newscasts, host talk shows, work as executives. Others enjoy retirement, travelling and spending time with family. These things were stolen from my mother and father, by Alzheimer’s.
It took us several years to recognize and accept my mother’s condition. We knew something was wrong; she was suddenly asking the same question repeatedly. Where are we going? Who was just here?
An expert says it’s the inability to “learn” new information, to remember the answer to an already asked question. She would re-introduce herself to people at events, forgetting she had already said hello. She began hugging us repeatedly.
Do you call the doctor because someone is hugging you more?
Since she was young, we were given (and were maybe quick to believe) other reasons for her behavior. A neurologist said it might be Alzheimer’s, but could be anxiety, and we should be hopeful.
We’ve now learned my mother was “compensating”, a term for how an Alzheimer’s patient tries to cover their condition. For my Mom, it was lists and calendars she studied faithfully. She could tell you what day it was, not because she knew it, but because she studied it.
She had instructions for preparing breakfast, how to get to the store, directions to her daughter’s house, even a description of her granddaughter. My mother was one of the smartest people I knew, which helped her hide the disease from her closest loved ones.
My Aunt Gertrude recalls my mother confiding to her that her memory was “getting really bad.” But she never confided her concerns to my father. Maybe she thought she could outsmart it. Maybe she wanted to protect her husband and children as long as she could.
I think she was desperately trying to hold on to normalcy, even as Alzheimer’s was giving her the fight of her life.
I now know this about Alzheimer’s disease.
It’s the 6th leading cause of death in the U.S. with no cure, no way to prevent it, no way to even slow its progression. Every expert I’ve spoken to, every article I’ve read, warns it’s on the verge of exploding – with the potential to destroy relationships, bankrupt families, and bring our health care system to a breaking point.
Deaths from Alzheimer’s are rising, up 66% in just 8 years according to the Alzheimer’s Association, and as of 2012, a new case is diagnosed every 68 seconds.
The increase is startling. A leading researcher at the University of Pennsylvania said, “I fear it will be a natural disaster worse than Hurricane Katrina… it is terrifying.” Last June experts testified before Congress that Alzheimer’s is “the single most significant health crisis of the 21st century.”
Do you know someone who survived cancer, a heart attack or stroke? You don’t know any survivors of Alzheimer’s. There are none.
The reporter in me wants to share these facts as thoroughly as I can.
The daughter in me wanted to save my mother, maybe I can at least do something to help stop the disease and save someone else’s.
I don’t want anyone else to witness the horror of Alzheimer’s. Explaining it and experiencing it are two very different things. I don’t want anyone to see the confusion and terror in a parent’s eyes that I saw in my mother’s. I don’t want your children to see it in you.
You do not want a front row seat to this disease. Trust me.
We need to make fighting Alzheimer’s a national priority. And we need to end it in the most fitting way: let’s make it a distant memory.