One of awful things about Alzheimer’s disease is that you grieve the loss of a loved one while that loved one is still alive. It’s like you’ve lost someone and found someone else.
It doesn’t bother me that my mother has no idea who I am nearly as much as it bothers me that when we were at lunch when I visited her in California last week she picked up a cucumber slice from her salad, nibbled off its green edge and then hid what remained under a piece of lettuce. Eighty years of life reduced to hiding food made my heart break.
It doesn’t bother me that my mother doesn’t remember her three sons, our wives or her grandchildren nearly as much as it did when I watched her play with a remote control dog someone had given her. She was lost, the way a child gets lost with a new toy. I felt the weight of realizing that what made her happiest made me saddest.
I struggle with the theology of this. How much has God been involved with what’s happened? I’ve heard someone say “God is useless in moments like this,” and what that startling statement means is that God hasn’t stopped any of this from happening. I struggle to reconcile both my belief in a loving God and my mother’s life-long Christian faith with who she is today.
And yet, I realize for the most part she’s happy. I know other Alzheimer’s families have it far worse than we do, and maybe that’s still to come for us, but right now my mother isn’t agitated or upset. How can losing your memory bother you if you can’t remember that you’ve lost it?
Alzheimer’s has made her less inhibited and more affectionate. My mother was telling me what a kind and gentle man her father was (she still remembers her parents) and then she picked his picture up and said, “I love you so much I’m going to kiss you on your bald head,” which was followed by a big smooch. Compliments flow and she hugs and touches often. I said, “I love you, mother” and she shot back, “I love you, too, brother,” which made us both laugh. Was all that extravagant affection always there, hidden under other layers of her personality that are gone now? Or is she just someone new?
A moment of inspiration came to me and I said, “Mom, do you know this?” and I started to sing, “Amazing Grace, how sweet the sound, that saved a wretch like me . . .” A broad smile came over her face and she looked into my eyes and sang “I once was lost but now am found, was blind but now I see.”
We kept staring at each other, smiling, and I was thinking “I don’t remember staring into my mother’s eyes and smiling since I was a very young child” when my step-father’s voice started up, “’Twas grace that taught my heart to fear, and grace my fears relieved. . .” and we joined him for that verse. I glanced over at my brother on the other side of the room, and he was sitting silently with his eyes closed. When we finished the second verse my brother sang, “Through many dangers, toils and snares, I have already come . . .” and the three of us joined him for that verse. Then, without pausing, all four of us sang, “When we’ve been there ten thousand years, bright shining as the sun, we’ve no less days to sing God’s praise, then when we’ve first begun.”
I once was lost but now am found. She beamed when we finished singing. The other three of us sat in silence, stuck in the awfulness of the lost and foundness of it.