What’s my name?
I was talking on the phone with my father, one mid-September morning, while on a walk in my neighborhood. I live in Portland, OR and he lives in India, in my hometown, where I grew up. He likes to read and write in Urdu, a language he used a lot when he was growing up and has a fondness for.
I asked him how to spell my name in Urdu.
“I don’t remember your name,” he replied.
I stopped walking, my phone almost falling on the ground. My dad, who’s seventy-four, has had Alzheimer’s for almost fifteen years and he’s at a point where he doesn’t remember stuff from a minute ago (although he can vividly narrate his childhood memories), but this was the first time he couldn’t remember a family member’s name –his son’s name.
I remember exactly where I was on the block when he said that. The sun was shining through the yellowing maple leaves and there was a cool tinge in the air. Inside me, there was a commotion of emotions: sadness at his current state of being, shock that he had reached the point I was dreading (where he’d start forgetting people’s names, followed, perhaps, by who those people were), worry about how my mom, my sister and I would continue to manage his health, nostalgia for the times when things were different.
“You don’t remember my name, daddy?”
There was silence on the other end. I thought the phone got disconnected; I checked, but no, we were still on the call.
“Can you take a guess? Do you remember your wife’s name?”
“And your daughter’s name?”
“Can you guess what my name is? It starts with a ‘K’.”
Another instance of radio silence, followed hesitantly by “Kunal?”
“That’s right, daddy!”
It was around 2005; we were at a funeral for my friend’s dad who had passed away. My father was talking to my friend, when he asked him how his dad was doing. I don’t remember how my friend reacted, but that was when we realized that my father has Alzheimer’s, something that runs in his family.
It started mildly, as it usually does: he’d occasionally forget where he’d put his medicines or he couldn’t remember which friend he had plans with for the weekend. Over the years, it worsened: he couldn’t remember what he ate for breakfast or who he had just talked to on the phone. My parents would have family or friends over at their home and dad would often sit silently, not participating much in conversations, because he didn’t remember any context of what was being talked about. Often, people would stop conversing with him because they were annoyed at having to repeat things; that only made him feel more isolated and withdrawn.
“I’m going to sleep now,” he tells my mom, at 10am. And again, at 10.05am. And yet again at 10.08am. Since the past year, he’s been fixated with the idea that he’s not sleeping well – even if does indeed sleep well, he doesn’t remember it – and that he needs to do whatever’s necessary to get a good night’s sleep. A lot of my mom’s day is spent trying to divert his mind and get him to do other activities so as to distract him from his sleep-obsessed thoughts.
“Can you help me cut these vegetables?” she asks him, just to get his mind focused on something else.
He starts cutting them and a minute later, stops and says that he’s going to sleep.
“Wait…just finish this one vegetable and drink some tea and then you can sleep,” she replies.
He cuts the vegetable, takes the cup of tea to the balcony, empties it in a potted plant and comes back to the kitchen.
“Ok, I finished the tea. Now I’m going to sleep.”
She stops what she’s doing, takes him to another room in the house and makes him start doing physical therapy exercises.
“Close your fist, hold it tight and then release it,” she tells him.
He does that once and then asks her: “How much longer do I need to do this? I want to sleep.”
She then gives him a book of math (a subject he loves), a pen, a notebook and asks him to solve some exercises. He’s had issues with trembling in his right hand for over a year now and he tries to do a few calculations with his quivering hand, before giving up. “I need to sleep.”
It’s a far cry from even just a year ago, when he seldom had issues with sleeping or any sort of fixation with a specific thing. We don’t know how or why he got stuck with it, but that’s what they say can happen to people with Alzheimer’s: their minds often start to focus on one specific thing – whether that’s a fear that someone’s stalking them nonstop and that they need to close all the blinds on the windows, or a thought that their family member isn’t really family, but some stranger – and over time, that focusing gets to a point where they think it’s not just a thought, but instead, a reality.
The shining tired light amidst all of this is my mom. I don’t know how she does it, day after day, month after month, but she’s the glue holding him together. My sister and I help her, but it’s her love, dedication and physical and emotional support that’s gotten him through these years.
There are days when she tells me she can’t do it anymore, that she’s exhausted and needs a break – just a short thirty-minute break where she doesn’t have to listen to his repetitive requests. “It’s not a lot to ask for, mom,” I tell her.
I often talk to my parents on my pre-work morning walk around the neighborhood. It’s night-time in India and dad’s usual conversation starts with him telling me that he wants to go to sleep. I have to divert him with questions like “what was the weather like today?”, or “what was your favorite language growing up?”. His answer to the latter question is almost always just one word: “English.”
I ask him if he remembers the names of his English teachers: “Was it Mr. Mahajan and Mr. Bharaswadkar?”
He laughs out loud: “That’s correct! You remember them?!” It’s one of the few times I can get him to laugh at anything.
I’m holding the phone in my left hand and my right hand clutches itself tightly. I know what that means: it’s an instinctive reaction my body has to what I’m feeling: a strong desire to hold his hands tightly in mine and be held by him, like I used to when I was a child, in his strong, loving arms. Those same arms that now tremble and can barely write a single readable sentence, once used to hold me close to his heart as he kissed me. Those are the same hands that used to write me long letters when I was in undergrad, asking how I was doing and whether I had applied to enough grad schools in the US. He’d end his letters by saying “I know you’re in college and it’s been months since we met, but you’re always in my heart. When we’ll meet later though, it will bring me immense joy.”
Almost forty years ago, I stood on top of the dining room table, with my shoes on and my hands in my pockets. My mom knew dad was coming home at around two pm. He had been on a week-long work-related trip and we were both excited to see him. I, as a five-year-old, was especially looking forward to a ritual we used to do whenever he returned from his trips: he’d come in, his work suitcase in his right hand and walk straight to the table where he knew I’d be standing. He’d hug me and I’d put my hands into his shirt pocket, where they’d be a bar of Cadbury chocolate, one of my favorite desserts. Before he’d even have a chance to put his suitcase down, I would already be eating the bar.
Sometimes, I want to stop paying rent to the landlord of reality. I want to be evicted from their home and forget about logic and rationales. I want to disregard the fact that you can’t really leave the present moment and rewind the video of your life. Instead, I want to believe that life is like a YouTube video where you can move away from the present – even if just momentarily – and move the slider back to any moment in the past and keep replaying sequences that are lodged deep in your body, in your subconscious mind: sequences where your father not only doesn’t ever forget your name, but instead, at your nine-year-old-self’s request, writes it for you in three languages; sequences where there’s a Cadbury bar hidden in your father’s pocket; sequences where he takes you on a bicycle ride around the neighborhood as you sit on the tiny front-mounted seat and you go over a pothole and fall down and he picks you up, makes sure you’re ok and makes you promise him that you won’t tell mom about it.
Along with the onset of his Alzheimer’s, his relationship with my mom, sister and I also started to change. He is no longer the curious, funny and outwardly loving person that he was prior to his Alzheimer’s. He still loves us, of course, but most of that love is now buried under his sleep-related anxiety. He seldom asks me any questions about myself, unless I talk about it. Even then, he listens mostly quietly with a couple of repetitive questions that he might occasionally ask: “What are your job hours?” or “How far do you live from your aunt?” (His sister, who lives in California).
Recently, my mom was recovering from a week-long period of flu-like symptoms. She told him she was feeling weak and that she needed his help with stuff around the house. He looked at her for a few seconds with a glimmer of sadness and empathy in his eyes, before forgetting what she had said and coming back to the present moment: “Where are my medicines? How long do I have to do these physical therapy exercises?”. This is the same person who, in our younger years, would get up in the middle of the night if he heard my mom turn around unexpectedly in their bed and make sure she was fine: ‘Are you ok? Do you need water? Is there anything on your mind that you want to tell me?’.
It’s hard to reconcile his past self with his current self; there’s such a vast chasm that it doesn’t feel like he’s the same person he was even twenty years ago. I try to find ways to reunite those two selves, as if I can bridge the gap of fifteen years in a few minutes, as if reuniting the past with the present would erase the sadness I feel about his current state.
I ask him about his job, how he used to commute, what his favorite childhood memories were, who his favorite friends were, what his parents were like – anything to rejuvenate his mind and, ironically, take him away from the present moment into the past. He answers my questions in a monotone of a voice and eventually all our conversations end with “Ok, I’m going to sleep now.”
It was a nightly ritual: I would lie down in bed, arms crossed behind the pillow and would ask him to recite a story: “Daddy, it’s story time!”. And, no matter how tired he was from working, he would sit by the side of the bed and read me a story. I’d interrupt him every few seconds, asking all kinds of silly questions that a seven-year-old does, and he’d put in the time and love to patiently answer every one of my questions, until I was sound asleep, after which, he’d drape a sheet over me and kiss me goodnight.
And now, almost forty years later, the situation is reversed: he’s the one asking my mom all sorts of repetitive questions: where are my glasses? How much water should I drink? How do I open this door? When am I going to sleep? Where’s the bathroom?
I wonder if he realizes how much he’s changed, if he remembers the person he used to be and the person he is now, and acknowledges the gap between those two personalities.
As a forty-three-year-old, the image that comes to my mind is of two people walking on a sandy beach. One of them, Daddy-then, is twenty-eight steps away from the start of the beach, where I was born. The other, Daddy-now, is fifteen steps ahead, each step corresponding to one year of our lives. Those fifteen steps haven’t been easy – they’ve involved walking barefoot over bumpy rocks and cold damp sand, but he did it, with help mostly from my mom. Sometimes, Daddy-now looks back at Daddy-then, but he says it’s too foggy to discern anything behind him. My mom, sister and I are with Daddy-now and we can clearly see Daddy-then, sitting down on the sand, waving at us, blowing kisses and wishing us all well. I can hear Daddy-then calling my name loudly: “Kunal! I love you!” And, with one arm holding onto Daddy-now and the other, stretching across fifteen years, to Daddy-then, I tell him “Daddy, I love you too.”
(This story was previously published on MonoFiction magazine)
Kunal Mehra is a multimedia artist who likes photography, filmmaking, writing and hiking. He grew up in India and has been living in Portland, OR, since 2002. His writing has been published by the Press Pause Press, The Mindful Word and ‘Academy of heart and mind’ magazines, amongst others.