Alzheimer's, The Long Good-bye
They call Alzheimer's Disease, "The Long Good-bye," because the person with the illness slowly becomes lost to everyone a long time before the body finally fails, usually due to some type of overwhelming systemic infection, such as pneumonia.
My beloved husband has been in the severe stage of Alzheimer's for some time now. As he declines and as his grasp of reality waxes and wanes, I keep relearning what "The Long Good-bye" really means.
Sometimes, during the down times when he doesn't know me or when the anxiety overtakes him, I feel a deep sadness, as if he's already left me. But, thank goodness, in addition to the downs, the long good-bye includes some ups, some good moments, and I've learned to hang onto those times like a lifeline.
In those moments, Bob looks at me, knows who I am, and says, "I love you." Sometimes he seems so much like the "real" Bob that I feel wild hope surge in my soul. Those times, though, are fewer and fewer now.
"I don't know where I am," he says, often several times a day, his voice low, his tone desperate. I tell him where he is, but it doesn't help because he has lost the "map" in his brain, the map we all have that lets us pinpoint where we are.
The inescapable fact, of course, is that this terrible disease is incurable. It serves no purpose to dwell on that though. So I do my imperfect best to go through this illness with Bob one day at a time, one "I love you" at a time, one moment of recognition at a time. And to treasure the good times even as I figure out on the fly how to handle the tough times.
A few years ago I took this photo of Bob walking away from me, which now seems prophetic. He is headed down the sidewalk toward our house, toward home.
So often he says, "I want to go home." The home he longs for is not our house; it's that intangible place we all yearn for when we feel unwell, a place where we can feel good and right and healed whole, a place where the chill of "Good-bye" becomes the warm "Welcome Home."
Where a man can be himself again.