My husband, Lon, died yesterday morning after, as the obituaries will say, "a long battle with Alzheimer's Disease."
Those words cover a lot of ground--seven, eight, maybe nine years in which the plaques and tangles of Alzheimer's confused and then destroyed Lon's mind. I should say his brain, because that's where the anatomical disaster struck. Mind is something else, but something hard to describe. Perhaps it's the content encoded in all those neurons and neurotransmitters, content that was obscured by Alzheimer's. Maybe it's the "ether' of the brain, to use a word from the nineteenth century (or earlier). Webster's first definition for ether is "an imaginary substance regarded by the ancients as filling all space beyond the sphere of the moon, and making up the stars and planets." Go small with this concept and you have a mysterious something in the infinitely small spaces between nerve endings, the spaces between brain cells, inside molecules and between the particles of atoms--something that makes structures come to life.
Ether, anatomy, biochemistry--I don't know much about any of these. But I watched while Lon struggled with the complexities of daily life, of a job, of relationships. He lost the ability to understand time, to count money, to write checks and pay bills. He lost the ability to write--to be accurate when writing for the newspaper. Journalism was his career, his passion, his vocation. But rather than journalist, he preferred to be called a newspaperman, or a reporter, an editor, a critic. These words said what he did. They were alive and active, with no pretentious "ism" behind them. But these parts of who he was were stripped away by the disease. He was relieved to stop working, to stop making those demands on his mind.
The world no longer made sense to him. No, that's not quite right. His brain kept trying to make sense of what he saw and of what happened around him, but what his mind created was at odds with what everyone else knew to be true and real. He attacked the pictures on video boxes. Our tall but gentle younger son was greeted with a raised and shaking fist. People wearing Cubs jerseys made him angry. When he wet his pants he blamed the guy who came in and threw water on him.
Through all of this, Lon's mother worried about the humiliation he must have felt. For the Lon of old to have known what would happen to him would have been devastating. He could not have borne becoming an impotent object of pity. In the early years of this battle with Alzheimer's, I was angry with Lon for many, many reasons. He, for his own deeply personal reasons, could not tell me what was happening inside his head. We fought bitterly, with no resolution, and he would sometimes exclaim, "Just shoot me. Why don't you just shoot me?"
The deepening dementia relieved his frustration. The depression lifted. The eager-to-please child that he carried inside appeared as the responsibilities and prerogatives of adulthood faded. The fog of Alzheimer's enveloped him, comforted him. and finally carried him away.
Yesterday evening, I stopped to use the phone at my family's church, where my younger son is an eighth grader in the parish school and where I direct children's choirs. There was an envelope waiting for me, full of die-cut paper angels with messages written on them by students in the sixth grade. Many were addressed by name to one of my three children, and they said things like "God is watching over you" and "You are not alone."
One in particular made me smile. It said, "God will not leave you astray." It's a malapropism, a confusion of words because of the resemblance in their sounds. Did the child mean "God will not lead you astray"? Or perhaps "God will not leave you alone"? This one was addressed to my older son, who at nineteen, has plenty of opportunities to go astray, though I am confident he will come through this great grief in one piece, compassionate beyond his years.
Still, that sentence sticks in my mind: God will not leave you astray. Lon was astray in so many different ways and places through all these years with Alzheimer's. Sometimes literally he was lost and not sure how to get home. He was increasingly astray in the ether of his mind, because the neuron pathways in his brain were twisted and obscured. He was astray spiritually, when the thing he counted on most in life--his intelligence--left him.
But God did not leave him astray. God was there in the fog. God granted him peace and people who cared for him, most importantly in these last days, caregivers at the nursing home who sincerely loved him. And God led him home.