Alzheimer’s Strikes Families, Not Individuals

I was sitting in a vegetarian restaurant on a bustling street in Hyderabad, my parents’ hometown in the south of India, waiting to pick up uthappams for my grandmother. My grandfather drove us to the restaurant on his beloved moped. As we waited for our food, my grandpa detailed his tumultuous childhood. He told me about how his father died of alcoholism when my grandfather was two-years-old. He described being raised by his adult sister and playing in the streets of Visakhapatnam with his nephews (though they were the same age). He eloquently painted the intense grief he felt when he lost his sister, brother-in-law and nephew during his adolescence. He talked about the struggles my grandmother faced as a young woman in the workforce during the ’70s. Raising his own family on a single income, along with countless nieces and nephews as the patriarch of his family – prompting him to devise creative solutions to ensure everyone’s happiness. After waiting about an hour for our food, we rode back home on the moped and ate to our hearts’ content in my grandparents’ pink painted house. 

A few months later, my grandfather collided with a truck while on that same moped. He suffered from a severe concussion that marked the onset of his Alzheimer’s disease. At first, I ardently believed he would “just get better.” He would just wake up out of the haze that sometimes afflicted his thoughts. It wasn’t like he was confused all the time – he would go days acting completely fine. He even came to visit us, along with my grandma, in the United States. The moment I knew things were not going back to normal came on my 17th birthday in Hawaii. I was laying in the sand, flanked by my parents and my uncle, staring at rocks being slowly weathered by the harsh saltwater. “Will he ever go back to who he was?” I asked my elders. My uncle responded in a tone he normally reserved for patients he saw in his clinic: “Unfortunately, I don’t think he’ll get any better. All we can do is slow the progression of the disease.” 

I refused to believe my uncle. My grandfather had always said that nothing compares to the Indian air and Indian water. He would often exclaim that India was where he belonged and that visiting the United States was ruining his health. What was once a lighthearted joke he made in my childhood became a mantra of mine. I truly believed that he would feel better in his own home, with the constant background noise of chaotic traffic rushing along Hyderabad streets. I deluded myself that his episodes of dementia were just a symptom of his unfamiliarity with his environment. The weeks flew by and my grandparents returned to their home halfway across the world. Living 9,000 miles away from my grandfather’s suffering, I selfishly allowed thoughts of my grandparents to drift away and my memories of them developed a rose tint. I refused to believe he would get any worse, as he was on all the right medications after all. 

After they left for India, my fear of the unknown quickly turned to guilt. Guilt for leaving my grandmother to fight the deterioration caused by Alzheimer’s all alone. Guilt for all the time I spent locked up in my room, using college applications as an excuse to evade spending time with my family. Guilt for every snide remark I made about the food or the people (or some other random thing that seemed weird to my Eurocentric teenage self) during my visits to India under the guise of cultural critique. I wasted so much time on making sure I was comfortable, that I was blind to how much I must have hurt my grandparents. The same grandparents that sent their children off to a land they knew nothing of to give me a better life. The same grandparents who traveled for days on end in their old age to be present for every one of my landmark moments. Though they live across the world, they’ve been at my birth, my first birthday, my high school graduation and so much more. I should’ve spent every possible free moment I had with them. I’ve come to this realization a little late, seeing as though I’m now running out of opportunities to talk to MY tata. 

It was naive of me to think that the disease would ease up. It was irresponsible of me to think that the hurt my grandfather’s diagnosis brought into our home would leave with him to India. Every time I see my grandmother’s tired eyes over FaceTime, I see the pain this unrelenting disease leaves in its wake. I hope I will never know the unique disorientation my grandfather experiences on a day-to-day basis, but I intimately know the helplessness and subsequent frustration his loved ones feel. This pain is not a kind companion. It feels like my family is standing in front of a train hurtling towards us, and we can’t move or scream for help. When the train reaches us, how will we survive the uncertainty and pain it inflicts? What will become of our connections to our family, our homeland, our culture?

It’s hard to make connections between the intensely joyful, intelligent man who spun tales about our warrior ancestors and the confused, struggling man I speak to now. I find myself mourning him, not for myself, but for my toddler cousin. She won’t have memories of the creative, slightly goofy man I knew. I look back on that conversation I had with him in the lobby of that random restaurant, and some infinitesimal part of me wonders if he knew that would be our last real conversation. Maybe some cosmic force ensured that I would know his story so it wouldn’t be forgotten.