When I was working actively as a physician, my patients rarely came to me with symptoms of early cognitive impairment. In fact, I cannot think of a single one. Family members occasionally brought in their loved ones when the dementia was more advanced, though.
I remember Joseph, for instance, who brought his wife and told me that there was “something wrong with mama.” Anyone had only to take a brief look at mama to know that she was pretty much out of it. Perhaps, I thought at the time, mama’s day-to-day changes had been so imperceptible that Joseph just had not noticed. This is possible, but I now doubt it. At her stage in the illness, I cannot imagine a husband not noticing.
I was aware of my symptoms several years before other people would have noticed. True, I did not have it checked out by a neurologist for a while, either. But I noticed the changes right away and asked my wife Marja, my daughters, and a couple of other friends about it. If they had mentioned anything, I would certainly have followed up with a doctor sooner.
Are other people not aware of their cognitive changes? If not, why not? Marja and one or two others have suggested that my previously high IQ made the losses apparent to me before others could become aware. But that seems unlikely. I see no reason why memory loss and confusion should be more noticeable to people with high IQs than to others.
None of us want to hear bad news, of course. People with cancer symptoms put off seeing doctors, too. But the reluctance to find out more about cognitive decline seems so much stronger. We humans have amazing denial mechanisms, but why are they almost universally so powerful in the face of Alzheimer’s and dementia? It is shame and fear, I suspect; shame so strong that one cannot bear to entertain the possibility of isolation. This feeling is so overwhelming that telling others—even our closest friends and family—terrifies us.
Whatever the cause, the failure to share only deepens the shame, intensifies the loss, refuses the love and comfort of human understanding, and smothers the chance to express the many levels of goodbyes that are so necessary throughout the course of this disease. It only exacerbates the isolation.
There is a real price to silence. If this blog brings only one person out of the closet about their diagnosis, I think it will have been well worth it.