In the world of Alzheimer’s disease, normalcy is what we need.
Since the release of Requiem for the status quo this past July, I have had many opportunities to initiate dialogue regarding both the prevalence of Alzheimer’s and other dementia in the world and regarding the stigma associated with the disease.
Three plus years ago, I wrote an article for my blog, Living: the ultimate team sport, titled: If Alzheimer’s isn’t a secret, then why are we whispering? I addressed the unfortunate reality that Alzheimer’s has taken the place of other serious diseases, such as cancer, as a verboten word in society’s language. I’m in my early 60s but I still remember the days when during a conversation with friends about someone who had The Big C, people would whisper and speak as though cancer was the naughtiest, most sinful, disgusting condition out there and those with the disease were most certainly the sorriest people on the face of the earth.
With ongoing medical advances, cancer is no longer the whispered disease; it enjoys a far friendlier status as a disease that no longer ends in death for the greater majority of people. If my neighbor, coworker, or acquaintance has breast, prostate, or rectal cancer, we feel comfortable talking about it over, say, lunch or dinner with a hearty serving of wine. We support walks for every and all types of cancerous body parts and we’re not ashamed in the least because cancer has become normal – it is mainstream, and because it is mainstream, it enjoys more attention, more open dialogue, and consequently, more understanding.
Not so with Alzheimer’s disease, The Big A, although the terminal aspect of the disease far surpasses that of cancer. There is no need to provide a comparison of dementia vs cancer statistics because Alzheimer’s and dementia are always fatal – not so with cancer. There is no prevention. There is no cure. There is no hope.
Is that why we’re whispering? Are we afraid of hurting the feelings of someone with dementia or his/her family caregiver? Trust me, it’s no secret to them. They are painfully familiar with what it is, what it’s doing to the family, and where it’s going. You talking about it won’t remind them of their situation. You talking about it won’t make their situation worse than it already is. When you get comfortable talking about it with those not acquainted with the disease and with those who are, you are bringing it out into the open and giving it the respect and attention it warrants.
The disease itself is no respecter of persons, but those with the disease deserve all the respect you can bestow upon them. It’s not their fault that they acquired the disease; let’s not make matters worse by treating them as though they are to blame. The diseased part of their body is their brain – grand central station for the very essence of who they are. A person with Alzheimer’s is still there, they are still viable, they still have worth, and they deserve a degree of normalcy that will take their disease out of the closet where it’s hidden and kept secret, and into mainstream society where it belongs.