In 1986, when I was writing on the sitcom “Designing Women,” the brilliant creator of the show, Linda Bloodworth Thomason, and I found out on the same week that both of our mothers had a fatal disease. Linda’s mother had acquired AIDS from a transfusion; my mom was diagnosed with Alzheimer’s. Within six months Linda’s mother had passed; my mom died five years later.
Years later, in 2002, I had a meeting with then Senator Hillary Clinton. Hillary and Linda were very close friends so I shared that coincidence. I also opined that had that incident occurred then – in 2002 – Linda’s mother would live and my mom would still die. What the Alzheimer’s movement needed was the same fervor and demand for a cure that the brave population of people with AIDS and their supporters brought to the halls of Congress. Hillary got it in a nanosecond and signed up as a Co-Chairperson with Senators Barbara Mikulski (D-MD) and Susan Collins (R-ME) of the Alzheimer’s Task Force.
So why haven’t we stopped Alzheimer’s yet? I would lay it at the feet of Congress who consistently refuses to give enough funding to research.
But they are not alone. They have to share the blame with the families who do not admit that their loved one had this disease. It has to start with us.
My father used to say that the first thing he read in the newspaper each morning was the obituaries. If his name wasn’t there, he’d go to work. So I am an inveterate obits reader as well. And here is what I’ve noticed: barely anyone dies from Alzheimer’s or, even, complications from Alzheimer’s.
What their obituaries say the cause of death is: “a long illness” – the most popular cause; “pneumonia” – a close second; “unknown causes”; “natural causes”; and my favorite – “his daughter confirmed his death.” I guess she just noticed that dad wasn’t real hungry. Interestingly, Ronald Reagan’s death certificate cites only pneumonia as the cause of death, despite Alzheimer’s famously being his killer.
All of these are code words for Alzheimer’s: “a long illness” – clearly; “pneumonia” – the end stage of Alzheimer’s when the body has forgotten how to swallow; “natural causes” – which Alzheimer’s is not; “his daughter confirmed his death” – and that’s that.
We have got to start owning this disease. It is no shame. It is a fact. And by not admitting to it, we perpetuate the myth that Alzheimer’s isn’t the killer we know it to be. It was only when victims and their families came out of their collective closets admitting to the scourge of AIDS that we started recognizing the pandemic it actually was. And, so, funds were supplied, research blossomed and, in the United States, AIDS became a chronic disease rather than a death sentence.
That can be the story of Alzheimer’s if we admit to it, talk about it, and demand funding from our elected officials. Our future is up to us!
Photo credit: dbking on Flickr