During A Pandemic, My Dad With Alzheimer’s Redefines Vulnerability

“We are….we are… vulnerable. That’s the word, isn’t it?” My Dad who suffers with Alzheimer’s said yesterday on his 78th birthday.

“Yes, we are,” I said. We were discussing the coronavirus and those most at risk during its spread.

“I have Alzheimer’s, you know.” He paused, looking at the ceiling for a moment. “Did you know that?” He asked.

“Yes, I know.” 

His face looked lighter, softer over the Google Hangouts chat screen than I ever remembered, his eyes a bit deeper, more thoughtful, at least to me. And though he sat beside his fox terrier and antique chest in South Carolina, chatting with me in Switzerland, I felt something in my chest. I guess “the tie that binds us” as he calls it, doesn’t weaken, on the internet, through a pandemic, a lockdown, across oceans, birthdays and diseases. It gets stronger.

My mom, who recently recovered from pneumonia, described how the neighbor was baking my dad a cake and another friend was making cupcakes. She told me how they all planned to stop by, staying outdoors of course, to wish my dad happiness. Then the phone rang. It was one of my dad’s best friends from his days attending Albion college in Michigan. His friend was calling from Florida with birthday wishes. My dad’s smile unfolded, like much of his life has to me in these past years, and he turned his attention away. 

My dad, John Aves, is a former U.S. naval officer, was the president of an advertising agency, an author, an artist, a recovering alcoholic, and an often challenging figure during my childhood. Yet now his willingness to become vulnerable has brought us closer. It is one of the characteristics about him, I think, that has helped him survive over ten years with his disease-- writing poetry, sculpting pots, telling stories, playing instruments, walking, swimming, becoming closer to my sisters and his grandchildren who live near him, and to me, even as I live in Switzerland.

How do we cope with our own fears during disease, through a pandemic, as we face the ending of a former reality, as we look toward our own endings?

All of us answer this question daily now, in the ways we continue with our lives. There’s denial, anger, recklessness, activism, fear, depression, faithfulness, hopefulness... and then there’s vulnerability.

My dad’s vulnerability is a bit like a flower. It has opened, and opened, and so I can see his heart now. I can see it better than I could during my whole life with him. His vulnerability shows itself as he discusses at times his fear of burdening my mother, his dread of losing his memory, as he narrates how it feels to shed the comfort of a lucid mind, of independence, due to a crippling disease-- his behavior has helped me, his daughter, to feel less afraid of loss, of becoming vulnerable myself.

What do we have to hide? It seems my dad says to me each year he survives with Alzheimer’s, talking incessantly about how to help others with his illness. He participates in Alzheimer’s walks with my mother; he writes to publications pitching aspects of his disease through his writing; he visits a facility where he occupies himself by helping those more vulnerable than himself; and he talks to people about how it feels to lose a little bit of his mind, weekly. 

“It’s hard to remember some words,” he says. But he remembers that word vulnerable.

Left to right: husband Lynn, my dad John, me, my mom Melanie on their visit to Switzerland two years ago

My dad’s ability to suffer through one of the most dreaded diseases openly, has strengthened me in ways I am only now, on the week of his birthday, recognizing. He lived openly with addiction in my childhood, and now he does so year-after-year with a dreaded illness. He has contributed to the thing I have somewhere in my own body that can stare down truth, can lift and open challenges. Through writing, I open my struggles as I raise a child with special needs, for others to learn from. Then I take my dad’s ability to sit in the open, to exist without certainty, to admit to struggles--  I take this over to a refugee camp and I lay it beside the moms with children I meet there who face uncertainty, trauma and challenges unfathomable to most of us. I connect with women and children of entirely different backgrounds simply because of the fact that I value their struggles. My dad has contributed to my drive to seek out those who are vulnerable, who suffer, not always because I can help them with my own wisdom, but because I might help them to see their own. 

See, the vulnerable are not weak. The vulnerable possess something bigger than pandemics and diseases and wars and aging and even death. They possess a light, as valuable as any I’ve found in any other human. These people who face life’s greatest fears-- they hold what the rest of us cannot see, without connecting to them. 

Could vulnerability have become my dad’s gift in disease? Could it become a gift for any of us who dare to collect it, to own it? 

Maybe during a pandemic, I’ll wish my father a happy birthday while I also wish for our world to see more clearly its most vulnerable people. I’ll wish for the world to look at those who suffer with disability, mental illness, disease, aging, and even more those without medical supplies, without food, or jobs or countries, without family, without the comfort of the things most of us think we need-- maybe we can look at them, we can see them finally with the utmost greatest esteem, and then we will see what is beautiful in ourselves, too.

My mom Melanie, me, my dad John during my December 2019 visit to S. Carolina when I was ill for the entire visit!

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