When you are told that someone has Alzheimer’s disease, what kind of images are conjured up in your brain? I bet they are frightening.
I’m on a mission to change those images we all conjure up. So as part National Alzheimer’s Disease Awareness Month this November, I want to address one aspect of that “awareness” — changing the stigmas associated with the disease.
I know the kind of images most people have Alzheimer’s disease because I’ve lived with them my entire life.
My paternal grandparents—Grandpa and Grandma Chopp, Frank and Gertie—lived on a farm in a Bohemian (Czech) community in the tiny town of Narka in northern Kansas. In Narka, even the store signs were in Czech. Grandpa Chopp was a large Eastern European man who wore coveralls, had enormous hands, and built fantasy houses for me out of straw bales. Grandma Chopp was a dumpling of a woman, round and smelling of bread and fried chicken. She seemed a bit crazy to me as a child, and I tended to keep my distance.
My maternal grandparents—Grandpa and Grandma McBratney—lived nearer to Salina. Grandpa Mac had been a farmer and a plumber and didn’t talk much, preferring to watch TV and smoke his pipe. Grandma Mac was petite, like me, and full of energy. She was an avid smoker. A complicated woman fond of setting her daughters against one another, she was sophisticated, a bridge player, and a master gardener.
Both my grandmothers eventually suffered from dementia (as did my mother). Grandma Chopp, living in a rural county with little health care, lived in a nursing home for 15 years with a diagnosis of dementia. Grandma Mac developed Alzheimer’s in her late 70s. She began losing more and more of her memory, forgetting to turn off the gas stove and leaving lit cigarettes on the table instead of in the ashtray. She had a small white and tan cocker spaniel / poodle mix which I had given her. Over time, she struggled to rem
ember to let the dog out. At the time, I was heading off to college and my mother still had a little brother to raise and in-home care way to the nurse’s desk for her “smokes,” since in those days they allowed smoking even in a nursing home. Gradually, she lost interest even in smoking and became, like my other grandmother had, totally bedridden, unable to recognize anyone.
I’ve never forgotten walking the halls of nursing homes where my grandmothers lived. They were filled with mostly older women lining up in the hallways, their eyes blank, their hair uncombed, their clothes spattered with food. Some were tied to their chairs, their heads flopping, their mouths drooling; some not moving; some making motions with their hands. Those experiences with my grandmothers’ dementia were scarring.
One of the problems of Alzheimer’s is the stigma that attends it: The images I just described are what most people think Alzheimer’s look like. They assume, explicitly or implicitly, that the diagnosis brings immediate and absolute failure. Quite literally the stuff of nightmares. I, too, had internalized this stigma. I thought only in binary terms: Either I had a healthy brain, or I had a brain filled with wormholes. Either I was a fully functional adult, or I could do nothing for myself. I was happy or I was empty. I was truly alive, or I was as good as dead.
As I came to learn, however, this binary mindset was far from the truth of Alzheimer’s. I and many other like me are living proof that Alzheimer’s disease is not an immediate death sentence when it is caught early. We are living rich, fulfilling lives, and it’s time we eliminate the stigma and changed the stereotypes associated with Alzheimer’s—which I’ll talk about in my subsequent blogs.