As many times as I read reflections of a daughter writing about her mother with Alzheimer’s, it never gets old; it never fails to punch me in the stomach; it never fails to make me tear up. Such is the case with Colette Cassidy, a former news anchor, trained to be dispassionate about every story. But there is no being dispassionate about your mother living with Alzheimer’s. Thank you, Colette, for sharing your poignant story:
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 hours of 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’m witnessing right now: the horrors of Alzheimer’s disease.
My mother has Early Onset Alzheimer’s, an aggressive form of the disease that hits before the age of 65, often in the 40’s and 50’s. My mother started showing symptoms in her 50’s and is now in the final stages of 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 also had it, I was not prepared for how it would hit my mother. A friend who went through it said, “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, doesn’t know her husband. She doesn’t think she ever had children. She rarely recognizes her large, loving family.
But more than that, a lifelong elementary school teacher can no longer follow simple instructions.
She doesn’t understand the difference between left and right, up and down. She is confused by a toothbrush, has used it to brush her hair.
She looks at a meal, unsure of how to eat, how to even pick up a sandwich.
She lives in a world that is increasingly confusing and foreign to her, which leads to uncharacteristic bouts of anger and suspicion. She needs constant supervision. And she is only 68 years old.
Women my mother’s age are anchoring evening newscasts, hosting talk shows, working as executives. Others are enjoying retirement, travelling, spending time with family. All this has been 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 while it might be Alzheimer’s, it 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 that 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 and a description of her granddaughter. My mother is one of the smartest people I know, and that helped her hide the disease from her closest loved ones.
My Aunt Gertrude recalls my mother fussing over a list once, confiding 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 that Alzheimer’s disease is the 6th leading cause of death in the U.S. without any treatment, cure, or way to 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.
While other major diseases decline, Alzheimer’s is rising, up 66% in just 8 years according to the Alzheimer’s Association.
The increase in cases 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 members of 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 wants to somehow save my mother, or at least do something to stop the disease and save someone else’s.
I don’t want anyone else to go through 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 have seen 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.
You can contact Colette Cassidy at firstname.lastname@example.org and follow her on Twitter @cc4alz.
Photo courtesy Colette Cassidy.