In 1994, when my father was diagnosed with Alzheimer's, we became the most famous family dealing with this disease. At that time it was shockingly new to release such a thing publicly. There was a shroud of secrecy and shame over it. It is, after all, an embarrassing illness, rife with unknowns. You simply can’t predict what parts of a person will vanish, or what unexpected and awkward things they might say or do.
But my parents decided to tell the world, and my father wrote a heartbreakingly lovely letter to America. I had the salve of both friends and strangers offering my family prayers and sympathy. But because Alzheimer’s was still not openly discussed, I had no one to talk to about suddenly becoming a daughter who was losing her father to this mysterious and relentless conqueror. Obviously, there had to be other people out there in the same situation, but I didn’t know who they were.
My sister Maureen and I began talking more than we ever had before, but not long after our father’s diagnosis, she was stricken with the melanoma that would ultimately kill her, so her own battle for life marked our conversations.
My brothers, on the other hand, maintained their stoicism, believing they could chart their way through the emotions by understanding the mechanics of the disease - how amyloid plaque formed in the brain, brittle and cruel, making synapses break like dry twigs. It was my first indication of how differently men and women process bad news. Our father was going to leave us in stages, disappear piece by piece, memory by memory and my sister, my mother and I just tried to keep from drowning in the emotions that overtook us.
“What’s going to happen?” I asked my mother in those first early days.
“I don’t know,” she said.
She’d asked the same question of one of my father’s doctors. He had no answers for her either. Along the way, someone gave us a booklet, which I believe was called The Long Goodbye, a phrase my mother began using and which I later used as the title for my memoir about our sad, strange journey. The booklet they gave us was clinical, uninformative and I don’t think any of us even finished it.
I tried to look into the future, but all I could see was the past – the times I’d hurt my father with my rebelliousness, the times I turned him away and wouldn’t listen to him. My despair felt like a rising tide that would drown me if I didn’t figure out how to swim through it.
Yet another image from the past rose up – not one steeped in regrets, but alive with promise. My father – the old lifeguard who saved 77 people at Rock River when he was a teenager – had taught me to not fear the ocean. Respect it, he said, and learn from it. Learn about tides and waves and how to go over them if you need to, or under; how to ride them to shore and how to judge the pull of tides so you don’t get swept away. If there’s an undertow, don’t fight it – go with it until you can break free and swim to shore.
Alzheimer’s was a new ocean, and I had to find my way. I owed it to him. I’d done so many things wrong in my life and in my history with him that I had to get this right. I had to have faith in what he’d taught me. He believed our souls are eternally cradled in God’s hands. So - I thought - his soul doesn’t have Alzheimer’s. It can’t.
That became my compass.
Beyond his broken language, his memories that splintered and vanished, beyond the moments when his eyes bristled with the panic he had to be feeling – “I don’t know where I am,” he said once, standing in the living room of his own home – I held onto the faith that his soul floated clear and serene deep inside him. And, by holding onto that faith, I reasoned, I could hold onto him.