Tessa and I left in 2017 to work as missionaries in Madagascar. Meanwhile, Karen and Molly worked tirelessly to continue caring for Roger. Then, November 2018, we knew the time had come to return and help care for Roger more intensively. In true Benjamin Button form, Roger had gone from stumbling like a toddler and fumbling with door knobs to walking a few steps then falling. When we could no longer help him to the bathroom, he went back into diapers.
Alzheimer’s does not just steal people’s memories as they sleep. It seeks to humble and humiliate. It breaks people down and robs them of their God-given dignity. Loved ones are forced to find a way to deal with it. But it is, at every turn, hard to watch and hard to deal with. Especially when, at a level you can never gauge, the person who is slipping away knows what’s happening.
Beloved Slug
Shortly after they moved up to be with us, Roger pulled me aside in the driveway. He was making the initiative to speak with me, which rarely happened. He told me he was sorry, sorry we had to move in with them and put our newlywed lives on hold. Then, he said something that stuck with me—that gave me a clue as to how everything was affecting him. He said, “I hate you have to do this, you’re a good guy and I’m a . . .” He struggled to find his words as his eyes darted back and forth, scanning his brain for a piece of information it had hidden from him. “I’m . . . just a . . . slug. And . . .” He trailed off. We all had to try and fill-in those missing pieces while talking with Roger. Many times, we probably misunderstood what he was trying to say. I hope I did understand him then.
Roger felt shame. He was ashamed of the burden he brought to his family without any ability to really make it any better. Alzheimer’s took away his ability to provide or to achieve anything. To hear Tessa talk, Roger probably struggled with shame his whole life. He never felt loved enough, never felt good enough. That was probably not the first time he felt like a slug: slimy, gross, unwanted, unloved little slug. I struggled then to comfort Roger. I think gave the analogy of someone with a broken arm. It wasn’t his fault he couldn’t help and needed us to. He was hurt. We would take care of him just as naturally as you take care of someone with a broken arm. But Roger’s description haunted me. I wonder how often that was his default view of himself. I know I often have similar feelings about my own self.
Roger loved the writing of Anglican minister, Brennan Manning (author of the Ragamuffin Gospel). Reading Manning’s writings in his middle-age, Roger finally understood that God loved him . . . that anyone at all loved him. Just like me, Roger had assumed before that God either didn’t love him or didn’t care about him and had lived most of his life as if he needed to make God love him. At least he could make someone else love him.
It struck me one day, as I watched my mother-in-law struggle to help Roger, how damned he was according to our culture of achievement. In his state, Roger was incapable of earning anything. He could no longer earn a paycheck. He could no longer win respect from his drive or insight. He could not earn praise for his accomplishments. Most of all, he could not earn love. Then I remembered with a jolt that I couldn’t either! Though I was a physically healthy 20 something, I had no more ability to earn the love of God or anyone else than Roger had in his weakened, confused state. I was working hard at that time to provide for our family, achieve accolades at school, and earn love from my wife by being a good husband. Yet, even though I was not disabled, I could never earn the acceptance from others that I felt I needed.
Roger reminded me that none of us can. God is not waiting for us to do great things or show great devotion before he will love us. We are all much more like Roger in his eyes than we want to realize, completely dependent and unable to achieve. God’s love flows from who he is, not who we are. Jesus came to achieve for us what we could never achieve for ourselves. Does Jesus come to those who give themselves to him and teach us to relive his achievements, to live out the good works God planned for us (Eph. 2:10)? Absolutely! But none of that has anything to do with us earning love.
When we were as good as dead, while we were sinners and his enemies, God loved us first. And once we glimpse that kind of otherworldly love that is so alien to our human abstractions of love we will weep over it and follow it wherever it goes. We love him because he first loved us (1 John 4:19). That was the miracle of God’s love working itself out through Roger’s Alzheimer’s.
Baker Storycraft 