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| THE STAUROS NOTEBOOK VOLUME 26 NUMBER 2 SUMMER 2007 | |||
During the years my husband suffered from Alzheimer’s disease, my friend and pastor more than once described me as faithful. The word made me cringe. It seemed to me, that given the situation I was in, a rational person would have found a way to flee. Yet I stood by, faithful spouse, advocate, caregiver, mother of our children, head of the family, driver, cook, housekeeper, companion, and ultimately, funeral planner.
I sought none of these roles. I would gladly have avoided them. Yet there I stood, where the Lord placed me, where years of intimately knowing and loving Lon led me. And now I count it a privilege to have been a witness to Lon’s awesome and awful fading away from life.
Alzheimer’s at mid-life is horrible. It is sad and tragic in old age, but not unexpected at age eighty or ninety. Lon’s troubles began in his late forties, while he was working hard at a successful career. Our three children were in elementary school, the youngest barely in first grade. Not all the signs of grace I saw along the way, not the brushes with the divine, not the faith of my children, not Lon’s final gentleness nor the new life I seek for myself now—none of these things can make me say. “Yes, this was the will of God, and we must bow to the hand of the Almighty.” What I will say is that God was present with us, as companion, caregiver, witness.
In a couple months, I will stand on a makeshift stage as Aunt Eller in the musical Oklahoma! At a difficult moment, near the end of the show, I get to say this:
“Lots of things happen to folks. Sickness, er bein’pore and hungry even—bein’ old and afeared to die. That’s the way it is—cradle to grave. And you can stand it. They’s one way. You gotta be hearty, you got to be. You cain’t deserve the sweet and tender in life less’n you’re tough.”
The dialect does not come naturally to me, but the substance of this speech is my life. Lots of things happen to folks. What happened to me and to my children was years of watching a husband and father slip away into the mystic fog of Alzheimer’s.
Lon was 56 when he died. I number the years of his Alzheimer’s from the phone call, seven years before his death, in which I told his doctor that he seemed to be asking the same questions over and over again. In hindsight, I can see signs that his brain had started to fail him at least a year and a half earlier. He was a newspaperman known among his colleagues for his work ethic and his accuracy. There were fights with copy editors, at least one about a missed assignment. His writing had lost its spark. His stories rehashed what was easy and familiar.
Lon almost never acknowledged that he was having problems, and he did not cooperate with efforts to figure out what was wrong with him. He would tell me, “The reason I can’t do things is because you don’t have any confidence in me.” He would get very angry when I would describe his behavior to a physician. The doctors were not much help anyway. Without meaning to, they put him on the defensive. Some focused on his alcoholism, others on his very apparent depression. Those things, they said, could cause cognitive problems.
Now, I can imagine the fear he felt. But he never, ever said “I can’t remember” or “What’s wrong with me?” He isolated himself. He lashed out at me and bullied the children. I was left to deal with all the hard realities that he could not think about or would not face: filing for disability, making sure we had health insurance, juggling our debts, and getting Lon to make a will and sign powers of attorney. “We need to take care of this,” I would say, wary of provoking him, but in need of his signature. He would snarl back, “You just want to get rid of me. You hate me.”
These words hurt, because there was truth in them. The things that had been rewarding about our marriage had disappeared, partly because of Lon’s dementia, but also as part of the larger story of our marriage. During the dark and confusing days, when Lon’s fear and depression made everyone in our family miserable and anxious, I talked with friends, with a therapist, with divorce lawyers. I researched dementia and alternate living arrangements for Lon. There were no easy options, no real solutions. I came to understand that I was going to be the sort of person who would take care of Lon. This was the person I wanted to be for my children. This was the value and ethic I wanted them to learn.
Almost four years after Lon’s problems began, we were referred to an Alzheimer’s research center where he was at last diagnosed with Alzheimer’s disease. I don’t think he understood when they told him what was wrong. His language was too limited. Language problems came to Lon later than they do for most people with Alzheimer’s. As a writer and editor, he must have had vast reserves of neurons devoted to syntax and vocabulary. A Lon who was unable to express himself would have been inconceivable just a few years earlier, but it was the loss of language that helped him find peace at the end of his life.
Or maybe this is just my view, framed by my struggles to manage him. When Lon could no longer speak in sentences, he could not argue with me. I did not have to listen to him and try to listen to the children at the same time. I could choose how to please him, nudge him into following my schedule.
Often during these last years, I would look at Lon and wonder, “How can someone just disappear?” Lon’s mother worried about his humiliation. The Lon of old, she would say, could never have wanted to be this way. How could he bear to be what he was now? How must he feel? In the early years of his dementia, in the midst of bitter arguments, he would say, “Just shoot me. I don’t know why you don’t just shoot me.” But as the Alzheimer’s progressed, the boasting, domineering Lon of old was no more. In his place, there was a child-like man, thin, with soft hands and confused eyes. His face would brighten for a moment when I would find him in the day room of the nursing home, but that look faded quickly. Medications kept the things that threatened him at bay. He was a gentleman with his caregivers.
During this seven-year saga of caring for Lon and his dementia, my children have grown up with a more complicated view of life than their peers. They share the tough and tender bond that develops between siblings who together have survived things that no one else will ever understand. By God’s grace, they are hearty.
Alzheimer’s is a family disease. Past the early stages, it is the caregivers who must face the challenges, solve the problems, and deal with the despair. The grief is constant and chronic, but also delayed. The here and now is so tough, the pain of looking back is so great. You care for the person in front of you, and as he loses his memory, you lose your memory of who he was and the things you shared.
It has been nearly nine months since Lon died. Today for the first time ever, I heard myself say, I miss him. I miss the man I married when I was young and skinny, and I miss the stooped and shuffling man I led by the hand to the front of church to take holy communion. Those two Lons are the same person, a child of God, redeemed and triumphant.
Of that, I am a faithful witness.
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