I first noticed signs of my mother’s dementia during a trip home to Minnesota about four years ago. I remember feeling panicked. You see, my dad had Alzheimer’s disease and needed full-time care for years. That long, awful journey took a terrible toll on him as well as my mom, who was his primary care giver. My sisters and I watched helplessly as my dad turned into a shell of a person.
Now I was envisioning a similar journey ahead for my mother.
Upon returning to my home in California, I had dinner with a friend. Relaying my fears about my Mom’s disturbing behavior, it was suddenly all too much and I began to cry.
Instinctively my friend reached over and patted my hand. After a minute, she settled back in her chair and said, “I understand, Nancy. Yet, it could be a lot worse. At least your Mom doesn’t have something really serious like cancer.”
I recall being stunned and feeling confused.
Later, I realized that her comment had actually made me very angry. Yes, certainly cancer — and any serious disease — is horrible. No one wants to battle any life-threatening illness. However, many, many cancers are now curable or treatable. Patients can often live cancer-free or in remission for a long time and maintain a good quality of life.
Dementia, on the other hand, is a slow, progressive, always-fatal disease. There is never a chance for remission or “beating the odds.” There is no cure or treatment to halt the disease.
Now that I’ve moved back to my tiny Minnesota hometown to help care for my Mom, I often think of my friend’s uninformed comment. At the time, she was only trying to make me feel better, yet she obviously had no idea about the effects of this terrible disease. No one close to her or in her family had suffered from dementia.
I’ve realized that without the first-hand experience, it is difficult to fully comprehend how dementia can ruin lives.
Dementia erases a person’s memory, changes their personality and takes away their dignity. It places huge financial, physical and emotional burdens on families who must care for their loved ones – and, I should add, most of those care givers are women. It’s a cruel, drawn-out death.
A friend recently called it “the worst disease, ever.” She’s right.
I follow dementia and Alzheimer’s disease research quite closely. In February, the administration announced its first national strategy to fight Alzheimer’s – the most common form of dementia. Calling it “one of the most-feared health conditions” it outlined a program with the goal of finding effective treatments 2025. However, I’ve since read that this effort is woefully underfunded.
From what I can tell, dementia research is splintered and we’re not close to a cure or even those effective treatments. I shudder to think of what will happen as my generation, the baby boomers, ages and becomes more vulnerable to the disease.
There are more than 75 million baby boomers — our largest generation ever — and every seven seconds another boomer turns 60.
The clock is ticking. We need a fully-funded, coordinated national effort or we face big troubles ahead.
Today, when I think about dementia, I still get angry. How does it make you feel?