It Happened To Me: My Mom Had A Massive Stroke And I Became Her Caregiver
April 27, 2013. It is my 32nd birthday and, as usual, I operate as though it is like any other day of the year. I cannot yet see any physical manifestations of age creeping onto my face or body. I don't feel as though I have any new insight into the meaning of things.
For me, the date is a calendar marker. For others, it's an excuse to take me out to dinner. I'm always happy to oblige. Yet despite the inertia of this annual passage of time, I feel different.
A creeping sense of unease, that begins at my lower abdomen, comes to rest at my neck like a gentle suffocation. I fear something is coming. I speak to my mother who has just returned from a trip to Asia and is visiting my nephew at university in the Midwest. I lay in bed and hope that I'm just neurotic; better to be a bit crazy than to be right about bad things coming.
The next morning, it comes. They are saying my mother suffered a massive stroke. I don't remember much of that day. Not like the day before. My mind is running a marathon of incoherence -- someone's mother is ill, did I turn off the stove? I should give my son something to eat -- to a faint chorus singing, "My mother, my mother, my mother."
The next few months are spent in various hospitals.
The stroke affected the right side of her body and because it occurred on the left side of the brain where language is, she is also suffering from Aphasia, which affects her verbal communication. I switch 12-hour shifts at the hospital with my father. I massage her, give her nice things to listen to: the Qur'an, brain wave frequencies, song. Mostly I sit and wait with her -- just in case.
I spend two months in this daily ritual and daze. It is during this time that a nurse first refers to me as a "caregiver." Was that what I was? I begin taking notice of the other caregivers on the critical care unit. I don't remember their names, but I remember their faces. I remember their stories, their tears and their tiredness. The feelings that I did not even have words for because I didn't yet realize they were even there -- I saw in these other caregivers. The understanding that I could not get from my friends I received from these strangers.
We were all alone and cut off from the world, immersed in our roles and duties as caregivers but I felt a silent camaraderie between us. Because it is a lonely road. I didn't realize how much so until we returned back home to California.
I never thought, at this age, I would be a caregiver for my 70-year-old mother and my 7-year-old boy. Even the term caregiver is far too selfless a term for me. I am a selfish creature thrust into a selfless situation; destiny gives me far too much credit. Now at home, I cannot help but think of myself.
I am not yet at ease in my new role, I still look away as I help my mother dress. This gets awkward when it comes to toileting but I want to preserve her dignity. Sometimes I find myself thinking, "When my mother returns from Asia, I will take her here," forgetting that she has already returned. I feel guilty for even crying because what am I mourning? My mother is still here.
Her inability to speak has been the hardest part. Sometimes I don't remember what her voice sounds like anymore. I like to play old videos I have of her with my boy. I watch them with him sometimes; I want him to remember how she was. Maybe through memory, we can will her back out of her current silence.
Mostly between the daily activities of my mother and my son, when I have a moment to look into my own mind, it is a jumbled mess of a puzzle. I feel as though I am achieving the bare minimum and running in circles. At her last therapy session, I heard an accordion playing in the distance, and was transported to my trips to Paris and the buskers with their accordions. How far I stand today from where I was. Life was meant to be fun and adventure. I was meant to meet my soul mate on a train a la "Before Sunrise."
My friends and family tell me that I'm young and need to focus on career and building my own life, that caregivers could be hired. I tell my friend Thom that we all can't be special snowflakes, that we can't all be the focus. Some lives are meant to be lived quietly. He says, "Every snowflake is a mathematical phenomenon, every snowflake is special."
But the idea of turning away from my mother? Of leaving her to traverse this depressing place she finds herself in alone -- I cannot. If there's one thing I want to convey it isn't the hardship that comes with being a caregiver -- it is the spirit of my beloved Mother.
She's always been a Big Fish. A soothsayer. A story teller. What is that you hear at night? An owl? Well don't let it hear you say a name because the bearer will come missing in the morning. In my custody hearings, she urged me to say "this prayer" and blow it onto the judge so he may look upon me kindly. "And how will I get close enough to do that" I would ask while feeling the comfort of her words wrap me.
For every ailment she has a cure, for every woe a culinary delight. She is my love -- the physical embodiment of my beating heart. I cannot walk away. When she's asleep I whisper to her, "Come back. Don't leave me."
Today, as I sit at this machine that measures eye prescription, the technician tells me, "Your eye, it looks like a snowflake." And somehow, it all makes sense.