The Long Goodbye

The First of Two Deaths 

The Forgetting 


And these are mere snapshots. We are also presented with moving pictures of Alzheimer's disease, attention-arresting images insinuated into narratives of utter loss. The following comments, for instance, appeared in the New York Times Magazine in 2007 and were offered by an internationally recognized authority in the area of aging and longevity:
 
For me, one of the most disturbing experiences is putting a fully incapacitated Alzheimer's patient in front of a mirror and asking him who he is, and he doesn't know. It's just shocking to see that happen to human beings--they don't even recognize themselves. Elie Wiesel, the Nobel Prize winner who wrote "Night," said we are our memories. Which I think is a beautiful statement of the significance of memory, because when you're older, you also tend to review your life and to try to come to terms with it, and if you have Alzheimer's, you're denied that opportunity.
 
Here, deftly and poignantly illustrated, is an existential nightmare: a picture of our self staring at our self and failing to recognize who we are. Biologically, we are alive, but intellectually, emotionally, spiritually--humanly--we are gone. The suggestion is clear: this is a disease that removes you from your body and leaves what used to be you staring mindlessly in the mirror, at nothing. 
 
This metaphor of self-extinction in Alzheimer's disease moves us to act. That is its purpose and value. But the marketing successes of fear-engendering metaphors come at a cost, and the people who pay the cost in this case are, ironically, those on whose behalf the metaphors are ostensibly circulated. The creation of that perception would be less objectionable if it fueled public action--if it inspired individuals and legislators to contribute resources to find a cure and/or support care--and that was the end of the story. But the picture we are painting about people with Alzheimer's disease is also instigating public inaction. Because we are imagining people with Alzheimer's as essentially gone, we often communicate with them accordingly, which is to say superficially, or not at all.
 
And thus our picture of people with Alzheimer's disease is coming true. They have and are disappearing. But not because of what is happening in their brains--rather because of what is happening in ours. Anyone who is imagined, and thus communicated with, as if she is already gone, will disappear, regardless of her cognitive condition. 
 
I offer you another image of someone deeply advanced in dementia, a personal image. It is one that inclines me to think that our currently dominant metaphors regarding the experience of Alzheimer's disease eclipse vast domains of meaningful presence. 
 
On the Sunday before my grandmother died from debilitations caused by Alzheimer's disease, my father wheeled her from her room in the nursing home to the cafeteria where a makeshift sermon and sing-along was in progress. Two dozen patients were lending feeble voices to old church hymns being played on a crudely strummed guitar. My dad placed my grandmother's wheelchair along a row of other wheelchairs and drew up a folding chair beside her.
 
My grandmother was not singing. She had not spoken in weeks, having long lost the ability to even swallow water. Again, this was the Sunday before she died. Several hymns into the sing-along, a familiar chord struck a living well in my grandmother's profoundly compromised memory. "The Old Rugged Cross" was the tune being played. My grandmother suddenly lifted a lifeless hand from her lap and extended it purposefully over the armrest of her wheelchair. Finding my father's leg, she twice squeezed it with an energy and affection that Alzheimer's disease was powerless to thwart.
 
It was my father who was now remembering--remembering the hundreds of times on a Sunday morning in the First Baptist Church of Sour Lake, Texas, that his mother, during one of the hymns, squeezed his thigh and said to him, "You are a good boy, John Michael." On this Sunday, some seventy years removed from those lived in Sour Lake, Texas, my grandmother did not speak. Even if she could have, she did not need to. There is speech after speaking, memories beyond mind. At the old rugged bridge between time and eternity, it is not our own face we long to see again on the other side. Memory serves us best when it serves our self least. There is no symbol less revealing of a life well lived than a mirror.
 
We need to find a cure for Alzheimer's disease. We must commit many more millions of dollars in meaningful ways to this vital goal than we currently are. Irreversible dementia is arguably the largest health and social challenge of the 21st century. And even greater than the public stakes related to Alzheimer's disease are the personal ones. Irreversible dementia is an experience that takes people, and those who care for them, into domains of despair and disrepair that few other pathways to death exact. There is nothing acceptable about the disease called Alzheimer's.
 
But people with Alzheimer's disease do not disappear before they die. They are never lacking the need for emotionally meaningful connections. Being able to draw a clock and recognize one's own face in a mirror are not the qualifying tests of our abiding humanity. No amount of marketing success justifies the creating of frames of perception that, however indirectly, leave people emotionally isolated. 
 
A greater motivator than fear is love. Love moves us to each other, reveals that we are, beyond all categories of difference, profoundly related, and always in need of relating. Let us respond to this life-changing disease by inviting presence, not scaring it away.


Michael Verde
President