There are a hundred things I could tell you about my late mother that are more important than the disease that caught her in its grip the last few years of her life.
I could tell you about her relationship with my older bother, who has autism, and her deep, lifelong friendship with him.
I could tell you how she took her experience fighting the schools to educate and treat my brother decently and went into social work as a career, helping countless other disabled and mentally ill people.
I could tell you about her accomplished painting, her love of cats or her civic involvement.
After losing her last week, though, I want to share something about the worst, about the end, about the Alzheimer’s disease that took this vibrant woman, who made friends and plans wherever she went, and confined her to a wheelchair and rendered her nearly mute and inert.
Because I’ve come to believe that this crushing disease doesn’t, during almost all its progression, achieve as complete a victory as it might seem. It takes away so much. The ability to live independently. The ability to talk. And in the end, the ability, or will, to eat. There are no heartening stories of Alzheimer’s survivors.
But our personhood is so strong that the disease, even in its late stages, can’t fully extinguish the human personality. No, the spark is still there, flickering, very difficult to detect at times, but there.
I acknowledge that some families have worse experiences than mine, wrenching though it was, and Alzheimer’s forces you constantly to ratchet your expectations downward. First, you’re glad of conversation, even if it doesn’t make much sense. Then, you’re glad of any words. Finally, you are glad of, well, anything.
Still, there are little gems of surprises. Once, I was wheeling my mom from the cafeteria area in her nursing home, hoping to get her from Point A to Point B without incident, when she reached out and got a death grip on the chair of another resident.
This other resident was a notably stately woman. “Hello, gorgeous!” said my Mom. Where did that come from?
Toward the end, when things were bleakest, my Mom would still shine through the shroud of the disease. If she talked, it was always incoherently, but I could see her making points the way she always had. She might chuckle softly at a mention of my brother. Even when I couldn’t get anything else out of her, she’d hum, to patriotic songs, to hymns, to “Ode to Joy.”
No matter how bad it got, you’d see grace notes in the incredible love showered on her and others by the staff of the facility caring for her. Or another resident would do something amusing or touching.
I remember an otherwise despairing visit, when another lady sat down randomly besides us. I said I liked the stuffed dog she had in a basket on her walker. She said he was a good boy, began to pet him and then kissed him a couple times lovingly on the snout. It was so sweet, I was moved to tears.
The last time I visited my Mom, days before she took to her death bed, I badgered her, as I often did, to try to get a reaction out of her: “Do you love me? Do you love me? Do you love me?”
Sometimes she wouldn’t say anything. Sometimes you might notice her trying to reply. This time, she got out an unmistakable, “Yep.”
I played the “1812 Overture” on my phone, loud. Again, to get a reaction, I swung my arms in exaggerated, mock conductor movements, especially toward the finale, with Tchaikovsky’s chimes ringing and the cannons firing in a crashing crescendo of victory and resolve.
And right at the end, my Mom briefly raised and twisted her hand in a conductor motion of her own.
Take that, you merciless, godawful disease.