September 27, 2011

Alzheimer’s & a daughter’s memory.

I hold my father’s hands down while I administer the nebulizer. 

He tries to slap my hand away when I put the mask over his mouth and nose—it doesn’t hurt, and I would appreciate how absurd it is if I could muster it, but I can’t right now.

I’m doing my daughterly duty with compassion, and even though it’s exhausting, I don’t care. My dad’s comfort is worth it. I just don’t know how my mother does all of this 24/7; I really don’t. Thankfully she has angels in her life.

After I put the mask on him, I hold his hands down and rub them for reassurance while he breathes in the warm, medicated steam. Later, I place two pieces of gum into his hands. He says, “thank you.” It is such an earnest sentiment, disproportionate to the act, as if I have done some great service, way beyond gum sharing.

I watch resignedly as he pets our dog, who is always by his side. I try to intercept a napkin that goes swiftly into his mouth. He slaps my hand away again. Maybe he thinks it’s his beloved vettila I’m taking away, and that’s why I’m getting the beat down. I don’t know. This sucks. Not just that I have to take care of him, but that I can’t talk to him about anything. No philosophy, no politics, no space, no poetry, nothing. I kiss his hands. The same hands that once expertly clipped aneurysms, now gently yet nervously fidget with no stimulation. These are the same hands that corrected mine on the steering wheel. And the hands that used to pick me up when I was a child.

This surgeon’s hands were once patient and never shook. Now they have become impatient and impulsive. 

When my father was diagnosed with Alzheimer’s disease, my family didn’t have any emotional conversations about it; I suppose we were all in shock. One day he was a renowned neurosurgeon with over 25 years experience, and the next day he was asked to see a psychiatrist before returning to the hospital. He hadn’t harmed any of his patients, but there was evidence that he was forgetting things enough for people to be alarmed. And when the psychiatrist asked him what year it was, dad said 1993.

But it was 1997.

My brother spoke with me on the phone shortly after that and told me dad probably had Alzheimer’s disease. I was barely 25. I thought Alzheimer’s was a disease for old people, like really old people, and my dad was just 63. Then the neurologists at Mayo Clinic confirmed our fears.

My father had dementia of the Alzheimer’s type.

As a neurosurgeon, he knew the precise meaning of this, as he and the brain were on intimate terms. What tragic irony. I remember one day, before the official diagnosis had been made, we were both sitting at the kitchen table. It took me several moments to gather the courage to ask him about his forgetfulness at work, but when I did, he responded severely and in no uncertain terms,

I will never forget the brain.

I felt so sad for him, for his tacit acknowledgement of his forgetfulness, and for his utter certainty that he would never forget the brain. Here was a man who was so passionate about the brain that before medical school, he received a Ph.d in zoology based on his study of, what else, frog brains.

But my dad was more than a neurosurgeon. He was a pilot, a photographer, a lover of philosophy, poetry, art, and Indian classical music. I still see him listening to Carnatic records in our 1970s living room. With his head swaying, he would slap his thigh to the beat or snap, sing, whatever; he would just enjoy the hell out of the music. And then there was poetry. He loved it all. John Keats, Omar Khayyam, Tagore, and most especially Malayalam poetry, which he would sing exuberantly, slapping our shoulders or knees at a particularly gusto-filled verse, smiling all the while. There was a silent reverence that people had for him that I understood because I idolized my father in a way, even though we had some rough years together during high school.

As a teenager in the late 80s, I wanted absolute freedom to listen to Pink Floyd, hang out with my friends, smoke pot, and write in my journal. My Indian parents were not only at times embarrassing, but giant roadblocks to that end—the American freedom I desperately craved. My search for identity was a condition rife with confusion for a young Indian-American person, and I made many bad choices. I wish I could tell him now that I knew he was trying his best to raise an Indian kid in an American world. I wish I could tell him that he taught me well.

My dad was not a god. He had faults like everyone else. He was a very intense individual, and that intensity sometimes manifested in harsh ways, but I choose to remember him, overall, as a very loving and generous person.

Sometimes when I hold his hands, I silently convey all of this to him, and somewhere, beyond the brain, I know he understands. 

The early stages of Alzheimer’s disease are the worst. The repeated asking of the same questions can be mind numbingly torturous. Every day, for the first couple of years, he would ask if someone fed the dogs, even though eventually we had only one dog. It was beyond annoying. The question would be asked a hundred times a day, or at least it seemed like that to us, and if we didn’t answer him right away, he got crazy angry. He was plagued by a laundry list of irrational, strange, and sometimes hilarious behaviors. One time he picked up a family member’s 8-month old baby by the leg saying, this is mine, and then proceeded to take the child to his room, placing him on his bed. For my mother, especially, taking care of my dad was a constant practice of patience and selfless service.

Dad doesn’t recognize anyone anymore, except my mom and sometimes not even her. The trauma of the diagnosis and the horror of the first five years have come and gone. The rising action and the climax are over. I anticipate the resolution could drag on for some time.

I have learned many lessons from my father not only from his general character and way of being with people, but through stock phrases he was fond of repeating. Whenever my brother and I fought over something, and my father overheard the inevitable, that’s mine, he would remind us in a stern tone,

There is nothing called yours and mine here.

As we grew older he would say,

What we know is very limited; it is all God’s grace. 

He stopped repeating this particular phrase a year ago; everyone who interacted with him heard it. It was an aphorism his memory held onto tenaciously, until it too had to go.

My dad taught me the importance of what he called, one-pointed focus, and he gave me the freedom to choose my own path. From him I learned real passion. He was deeply interested in his work, and he studied it voraciously throughout his career. He even bought a 3-D television set to watch his surgeries, which he had to use specialized goggles to view. (He was one of the first nerds, I think.) Videotapes of brain surgery were a constant part of my growing up. I couldn’t believe those were my dad’s hands. The same hands that used to help my mom fry our family’s constant supply of plantain chips could also delicately operate on a spinal cord.

My father’s hands are a landscape in and of themselves. Rivers of veins bulging out of fertile earth. They are a perfect union of working man and artist. When I was a child, I would sometimes peek into my parents’ bedroom and see him lying there just staring at his open right palm. And then at his index finger. This practice was a mystery to me then, but now I think I understand.

It was a meditation on oneness, on the unity of things which only appear to be different.

And when I look at my hands now, I see not just our physical similarities, but also some greater connection of consciousness between him and I and all things.


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