The cusp of uncertainty
A collection of real-time feelings watching my dad suffer in the ICU.
I rested my palm against Abbu’s forehead. His eyes were shut, as they had been for the past three days, and his skin sizzled like a shard of glass caught under a glaring sun. The ICU nurse had assured me that the fever that made itself known against my hand, rising and falling over the last 12 hours, was being treated.
The constant beeping of monitors in the ICU is a good thing, I thought, until the beeping transformed into an urgent alert, flashing red on and off. It spelled trouble, but it wasn’t always an emergency. This I learned after dashing out to the hallway to check if any staff were rushing to the room, only to find doctors chatting away at their desks and nurses scrolling on their phones. The IV drips, for instance, often beeped red when Abbu would lift his arm, tighten it at the elbow, causing the drip of fluids to slow to a stop. If it were really an emergency, I told myself, they would come.
This isn’t a remark on the quality of care my dad was receiving. In fact, I was a bit taken aback by how patient and informative the care staff was, walking me through the analysis of what he was experiencing, even if the explanations were long-winded and laden with medical terminology. I nodded along, and asked pointed questions, but truthfully, it was challenging to absorb the verbal wall of text in full. I took to jotting down notes on my phone in an effort to keep the medical updates in tact, and of course, to confer with my far more informed peers.
Nothing quite compares to the panic that sets in when you wake up to a series of missed phone calls from the emergency room. On Tuesday morning, I blearily opened my eyes to find my phone ringing. Picking it up just as the incoming call ended, I glanced at the phone numbers that dominated the screen and suddenly felt my heart in my throat.
There was a voicemail. I read the auto-transcription before listening, and one phrase jumped out: Jacobi Medical Center.
The time was 8:32am. I thought of what had happened just a few hours earlier. I had been roused from a deep sleep late in the night, or early in the day, depending how you looked at it. Stumbling out of bed, I swiped my phone from my desk to see a number I didn’t recognize. A telemarketer, no doubt sent from the depths of hell (or an Indian call center) come to disrupt my REM cycles – or so I thought. Annoyed at the disruption, I put the phone down and crawled back into bed.
Now, I realized, the number I had dismissed as a telemarketer was the same one that left the voicemail.
As of writing this, Abbu has been hospitalized for five days. He was admitted around 2 in the morning on Tuesday because the staff at Providence Rest, the rehab center where he lived, had found him lethargic and called an ambulance.
Just days earlier, Akash and I had gone to visit him. It was a stiflingly hot Saturday morning, but bright and sunny enough that we decided to take Abbu out to sit outside for chai and a snack.
I knew immediately that something was wrong. During the day, the seniors on the fourth floor – the long term ward, with patients suffering from varying afflictions — were usually in the common room, watching TV or eating lunch. Though Abbu’s dementia was advancing, for the last couple of months he typically had an upbeat disposition, in spite of his inability to carry a complex conversation.
I spotted him sitting in his wheelchair and frowned. His face usually lit up when he saw myself, Akash or Prima arrive. Today, it sagged, and he appeared far less alert than usual.
We perched on a bench outside. My suspicion that something was wrong deepened, when I realized Abbu couldn’t grasp the cup of tea I offered him to drink it himself. Nor could he eat the samosa independently. I stood to help him take tiny sips of until there was nothing left in the cup. He nibbled away at the samosa I cupped in my hand until it disappeared.
It was unlike him. Nonethless, his health conditions had deterioriated drastically in the last year, such that it was difficult to pinpoint was his new normal would be with every visit. Still, I pointed out my concerns to the nurse behind the desk as we dropped him back off, and she promised to alert the doctor. Three days later, here we are.
I’ve spent far too much time in hospitals, neither for work (could you imagine me working in healthcare) nor myself (knock on wood), but for family members over the years. From my grandmother, to my own mother, to Boro Mama, and the many times that my dad has been hospitalized, the walls of Montefiore and more recently Jacobi were not unfamiliar. In fact, I had visited so often that I’ve been privvy to the typical state of mind I adopt in these contexts.
Controlled, measured. Ensuring that we had all the facts, at least in this latest stint. This week, I have been both present and not. I wonder if spending hours by Abbu’s side, while also shutting off painful emotions is a coping mechanism.
It is a hard thing to watch people suffer. It’s even more difficult when the one suffering is your father. Couple that with a cocktail of feelings ranging from anxiety, to guilt, to grief , to mixed emotions representing the volatile relationship we all held with Abbu, to absolute numbness, and you’ve basically summed up the complexity of human beings.
It is times like this, these stints in the hospital, where my mind wanders off and constructs an alternate reality in which I exist as a healthcare worker. Not because I ever wanted to be a doctor or nurse, but as a means of control, to understand, to not be in the dark when the real doctors throw a dictionary of terminology at me that might as well be in Japanese. Evidence of my control issues make themselves known in these situations, when I frantically contact loved ones who possess even a shred of medical knowledge in an attempt to regain the wheel.
As I mentioned, the doctors have been helpful. Interestingly, the staff of residents at the ICU seems to be primarily made up of international doctors: India, Greece, China. Everyone’s bedside manner is impeccable, even when I press further on the information they share.
Mental observations during times like this are fascinating: in spite of the sight of my father bedridden with a tube stuffed down his throat (he was thankfully extubated a couple of days ago), I still feel this odd feeling that I am pestering the staff when I appear at their desks for questions. As though I am bothering or annoying them in some way, even though this is literally their job and I am witnessing my parent in deep distress.
It disturbs to notice this feeling manifesting in such a context. I can’t help but to loathe myself for this shred of hesitation, and thought back to a passage I’d read years ago in Malcolm Gladwell’s Outliers, where he describes the phenomenon of how some plane crashes have taken place because of some cultures hesitate to question authority, hence a hesitation in regards to communicating urgency. This is something that I’ve found myself doing more than a few times, and it disturbs me on many levels.
From what I gather, Abbu is doing better than he was when he was admitted. He finally opened his eyes a couple of days ago, a positive sign, but the bad news being that a recent CAT scan found brain bleed, which likely indicates why he is having a tough time rousing and communicating. Akash and I were hovering over him on Friday when he finally opened his eyes, at least partially. I asked Abbu to say my name, and after a few seconds, he gasped out: Tania Rahman. I was elated, though he struggled to say Akash’s name when prompted.
Later on, while Ammu was in the room and praying over him, I reminded him of her name and urged him to repeat it back to me.
“Shelly tho bolsi,” he uttered after a few moments. Ammu and I beamed at each other.
Saturday’s CAT scan revealed that while his brain hadn’t stopped bleeding, it had gotten worse. In online reports, the doctors used the word hemorrhaging, which reads far worse than “brain bleed.” I spent the day perched in the corner of his room, reading (for the umpteenth time) an Anita Blake novel while my phone nestled beside Abbu’s ear, humming Quranic verses hummed to abate his fears. An inability to communicate while you’re lying on a hospital bed with needles and tubes invading your body is up there for top worst experiences. If I couldn’t stop the pain, the least I could do was be present to witness it, and offer the comfort of religion.
Each day feels unpredictable, and I’m uncertain as to how to proceed. With caution? In preparation for the worst? Or hopeful for a positive outcome?
I’ll update further as the days progress.
There’s nothing that evokes the feeling deep coziness quite like Sunday morning rain. I woke up that morning, enveloped in my blanket’s warmth, and instinctually reached for my cell phone. A missed call from the hospital.
Dialing back the direct line they had given us, I spoke with the resident doctor, a tall Indian man who couldn’t have been much older than I was. A few days earlier, he had sat with with me in the hospital room and empathetically walked me through what was happening and what to anticipate in the days yet to arrive: a detailed, clinical explanation underscored by kindness.
The tube was back in, he relayed over the phone. I said nothing. He went on to explain that they had found Abbu breathing really hard, and likened it to the emphatic heaving of someone having an anxiety attack. They had called in the morning to let us know, and to receive a directive from us, the healthcare proxies — should they re-intubate? Or DNR? I learned recently – my medical prowess advances significantly during my stints as a hospital visitor — that without contact with the immediate family or healthcare proxy for a patient, the default step is to re-intubate.
“What would he have wanted?”
A question pressed upon us for the last few days. Before the first extubation, the doctors had warned that there was potential for complication upon removal, and urged us to think about our answer. To gather as a family and consider what card to deal to the man who would suffer the consequence of our decision.
It sounds dramatic, but it feels like playing God: to be asked preemptively whether to pull the plug or not? Or prolong his suffering? Having a tube shoved down your throat, up your nose, being constantly prodded with IVs and intaking calories through a drip – was this a life worth living? Was it our call to make?
The physicians call it “Substitute decision-making.” I call it nauseating.
Perhaps my thought process is a touch naive, but I couldn’t bear to be the one to snuff out the possibility of recovery, even if there was a chance, and even if the life wasn’t worth living. A life confined in a wheelchair, an inability to wipe your own backside, cognitive function in severe decline, and the probability of aspirating again and re-living this nightmare at an all-time high. The doctor had understood during our in person discussion, and left me alone with my thoughts.
I looked out into the balcony to watch the torrent of rain, and began to cry.
We arrived to the hospital to find Abbu, frail, eyes shut, thinner than I’d ever seen him. They sedated him following the intubation for fear of him pulling it out, and took the opportunity to insert the nasal tube as well. He’s gotta eat somehow, right?
The afternoon unfolded much like previous days, this time with rain accompanying our dreary thoughts. We all showed up this time, taking turns sitting beside Abbu in his hospital room.
Once or twice, he stirred from his sedative-induced sleep, eyes scrunching, eyebrows furrowed in discomfort. I had taken to pacing around the room, glancing at him every so often and pausing my rounds intermittently to place a hand on his forehead. It had become my signature move for the last week, a mode of comfort to remind him of our presence, to assure him that we were praying. I spoke soothingly into his ear, reminding him of the people in the room: Prity, Prima, Akash, Shelly.
I had no idea if Abbu could hear me or not. During one of my rounds, I hovered over him to find a wetness had appeared at the corner of his eyes that had not been there before. Tears instantly sprang to my own eyes, mirroing his, and I hoped against hope that he was unconscious, lost in dreamland, somewhere far far away. That he didn’t know, couldn’t know, that he could not be aware of what was happening.
