Seventy-Three Days

At 5:30 AM, I was awakened from what had been a mere three hour-eye shut on the hospital’s cold metal bench. “Madam, wake up, they’re calling you to the ICU,” the night guard said. By now, it was an automatic reaction to just spring up and travel a floor up to the ICU. Every other night, I would get such summons – either to keep her company while she couldn’t sleep or stroke her head because she was feeling anxious. After 73 days of doing the same thing over and over again, an untimely call to the ICU didn’t give me a sense of urgency any different than it did earlier.

Funny, because I should have guessed why I was being called. It wasn’t like she was going to wake up from her narcosis all of a sudden and greet me with one of those child-like hand waves and weak, forced smile. Of all the days I anticipated entering the ICU to the words, “I’m sorry”, I wonder to this day, why at 5:30 am on that September 12th, I didn’t guess she was gone; considering the words “Let’s pull the plug” came from me just 5 hours earlier and the doctors had obliged.

I still can’t remember how I got to the ICU. I think I was almost sleep-walking until I finally woke up to one of the nurses saying, “I was trying to reach you on the phone. It happened at 5:15.”

“It happened at 5:15” didn’t register. I was prepared for the words, “I’m sorry”; not “It happened at 5:15”. So as the nurse said this, I walked past her and to the bed where I had left her 3 hours earlier. There was generally a mask on her face – a non-invasive ventilator that gushed oxygen into her weak, fluid-filled lungs (an effect of her renal-failure). Removing it even for a few seconds and replacing it with a regular oxygen mask would make the O2 levels in her body plummet. My uncle would often get the nurse to pull it out just to see if she had anymore fight left in her to breathe independently. It bordered on ending her life prematurely so the nurse didn’t humor him much.

But now, there was no mask. And it still didn’t register. I just stood there at the foot of her bed without realizing that her body wasn’t rising and falling with breath anymore. And then the on-call doctor who I had become quite familiar with came over and said gently, “So yeah, she passed away.” It was close to “I’m sorry” and this time it did register.

In four months, it’ll be three years since I last spoke to mom. My last words to her when she was conscious were – “You need to take care of yourself now.” My last words to her after she had become a lifeless cadaver were – “We’re both free now.”

If you were ever to ask me, what was the biggest adventure of my life? I wouldn’t probably say it but for sure, think that everything about those 73 days at the hospital was adventurous. My dear uncle gave me his car, a cute, purple one which became my ultimate companion during those days. It was my home when I was either not at home or unwilling to sleep on the already crowded hospital floor and its cold benches. The valet of the hospital knew when I would drive in so they (almost) always had my favourite spot reserved for me. It was the best spot because I wasn’t in direct eyesight of people when I would light up the ritualistic joint every evening. It helped numb myself of having to watch my mother wither into a sagging sack whose muscles atrophied because she spent most days in bed asleep.

The car’s steering wheel had just the perfect sized gap to fit my phone in it while I reran New Girl and How I Met Your Mother. Despite some great suggestions, my mind couldn’t accommodate more intense, thought-provoking, or unfamiliar media content, given that it was dealing with mom’s unpredictability – suddenly waking up after 5 straight days of oxygen-induced coma, suddenly falling back into slumber after days of staying awake. Every time we were ready to pull her out of the ICU, she’d go back to sleep.

It also doubled as my bedroom, my dining room, my reading corner, and of course a party place when friends would stop by to check up on me. But it was always off-limits to the relatives. When they would come visiting, I would generally hang out with them in the hospital cafeteria. Even if the car was clean and had no hint of paraphernalia. I also didn’t like hanging inside the hospital much, so it helped me keep such interactions crisp.

Living in that car, helped me find the perfect balance between being at the hospital and at home. Because being physically at home (even though it was just 15 minutes away) was not rewarded well when during the first month of her hospitalization, I decided to catch a break from the hospital one evening. I finally had the house cleaned for the first time since mom had to be taken to the hospital. Her bowls of apples were still on the chair-cum-coffee table and were making some fruit flies extremely happy. My phone rang just as I was settling in for the evening.

“Hello,” I said, knowing exactly where the call came from.

“Hi, I’m calling from the Medical ICU,” said the nurse.

“Yes, tell me.”

“Can you please come upstairs? It’s an emergency.”

“Okay, I’m not at the hospital right now. I came home for a bit. I’ll be there in just 15 minutes.”

“You’re not at the hospital?”  

“No, but I’ll be there in 15 minutes,” I said and hung up as my hands shivered while dialling my uncle’s number.

We (uncle and I) reached in 30 minutes. Mom had been intubated.

She was undergoing a procedure to drain fluid out of her lungs. For this, they had to put two large tubes through the sides of her body and in the process, because there was a lot of mass to get through, a lot of blood was lost. I was aware of this risk.

But she woke up from it. And within a few days, they even removed the tube that was breathing for her. When it was in, she only talked with her eyes. Clenching them shut with frustration when I couldn’t understand what she was trying to say. There were tubes on either sides of her piercing into her lungs and others running through her arms so she couldn’t write much either. Seeing mom wake up after kissing death for a bit, my God-loving family was convinced that mom would defeat death and her renal failure to come back to her larger-than-life self. I was less hopeful.

Since that episode and with the nurse’s words – “You’re not at the hospital?” piercing my mind to this day – my evenings were always spent in the parking lot of the hospital. I would go home for an hour, leaving the campus at 7:00 am after drinking a cup of coffee so I wouldn’t waste time making it at home. Once I would reach home, time was spent freshening up, dressing up, checking my work schedule for the day. I would drive back to the hospital no later than 8:30 am. Park the car in my favorite spot. Go up to the ICU to meet in-charge doctor and get an update from him. I would also inform him that I’d be at work for the next 5 hours so whatever call he had to take to the best of his knowledge if things were to go south, he could in case I wasn’t reachable.

He was also informed to maintain homeostatic updates regarding mom’s condition if my father came trying to bump her down to the general ward or encourage the doctors to pull the plug prematurely. All my dad knew was that my mother’s condition was fragile and the ICU was where she would stay put. This didn’t go well a lot of times with him because we had no money to pay for the bills. But bless my company – that took care of it so I had one less worry and just focused on keeping mom comfortable – something she longed for a lot in her last months.

So after the morning ICU visit, I’d take the metro to work. Finish everything I could by 12:00 pm and head back to the hospital for the 1:00 pm visitation. I’d get to meet either the doctors again for my afternoon update, even if it was the same thing over and over again. The visitation ritual was something like this:

1. I’d greet the guard at the ICU door who kept yelling sympathetically at visitors when more than one kin of a family wanted to enter the ICU. There were so many of them and the visitation was only for an hour. I’d try to be in their good books in case I had to go in to meet mom during off-hours. After you’ve become a one-month-old inpatient at the hospital, your family gets special treatment.
2. From the door of the ICU to my mother’s bed, there would be at least 3 more ‘Hi’s exchanged with the nurses.

Situation (a): If mom was awake

3. “Hi, Mom!” I’d say as I dispensed alcohol rub on my hand. She would either look at me from her chair with her neck drooping and her eyes shifting up; or wave weakly from her bed where she’d still be in a sitting position. Her neck was always drooping. Even when she was awake and responsive, she was sleeping.
4. I’d watch as she was having her lunch, getting her dialysis done, or working with the physiotherapist on this particular apparatus to strengthen her lungs. Mom had to breathe hard enough into a plastic pipe to push the ball to a particular mark. Her lungs had way too much fluid in them which despite being drained, would fill-up almost immediately.
5. I’d walk over to her chart and check her creatinine levels, potassium levels, overnight heart rate records, doctor’s notes – with this look of tense concern as though I knew exactly what those terms and data points meant. In the meantime, a doctor would come on his rounds as well and we’d chat about world affairs until he would tell me that mom was no better or no worse. She had to stay put.
6. I’d sit with her till the guard from outside came informing all family members that an hour was up. PS: I was always given an extra 5 minutes to stay. I never abused it.

Situation (b): If mom wasn’t awake

The only difference would be me not saying, “Hi Mom!” out loud. Sometimes, I’d sit by her bed, hold her cold, swollen hand, and shed a tear or two (it’s always hard to do this when they’re awake); the doctor would come by and try to wake her up but to no avail.

In all, I think the alcohol rub, her chart, her monitors, and the interactions with her doctors and the guard were the constants in all those ICU visitations. Not every day did I feel like spending the entire hour with her in the ICU. So on days that she wasn’t awake, I’d make sure to check all the important boxes before leaving early.

On days that she was awake, I would occasionally mix up my interaction with her. Most days, we would both sit in silence during that hour much like we did when we used to watch TV together until 3:00 or 4:00 AM. Mom and I talked about different things but we also enjoyed being with each other in silence. Except for the times she’d be crying over a relative’s indifference to her or my own indifference to her reaction. Relatives had suddenly become non-issues when she found herself in the ICU.

Sometimes, when she’d be awake, I’d set up a video call with my sister or one of mom’s friends abroad so they could talk for a bit. Sometimes, I took a book with mythological stories and read them to her while she gazed into space with heaving breaths. Sometimes, I’d bring in special guests to meet her and keep it a surprise for her just to see her reaction – the widening of her eyes, her saying, “Oh! What a nice surprise!”

For less than a year until her hospitalization, we had forgotten how to be around each other. I had ‘abandoned’ her to start living by myself in another part of the city, she felt betrayed, we were both dealing with our own depression without getting the much-needed help for it.

Her time at the hospital, however morbid and death-y, brought us closer together. I was her primary caregiver, her decision-maker, the one who got her music, books, a fan, tied her hair, got her Vaseline for her chapped lips, and even made sure that she had constant doctor’s attention – I was her provider – much like she was for me all my life. I experienced different levels of my relationship with her in those 73 days.

When she was almost getting better and about to be discharged after spending 15 successful days in a high dependency unit (a smaller ICU with limited patient-attention), we were both afraid of life beyond the hospital. It would be a new normal for both of us and honestly, I didn’t think she would make it out of the hospital. I’m not sure if she thought so too.

She had become very comfortable with the constant attention and people around her. I had become comfortable with her receiving this attention too. I was afraid of how I’d manage to take her to the bathroom every day, give her a shower, sit her down on the toilet, brush her teeth, groom her. I was 23 and barely knew to cook, much less give her the care equal to 5 nurses’. Dad was around but had a very different, tough-love approach to caregiving. Mom knew she wouldn’t be able to handle that. She wanted me around always. She wanted the attention, to be pampered, like we all do when we’re sick.

Being around the hospital, sitting in your car waiting for an emergency call from the ICU, and never missing a visitation is one thing; being the one on-call at every second of the day is another. Without a choice, I think I may have still done the latter. But it’s impossible to know now.

On the supposed last day of her stay at the hospital, pulmonary edema (my definition – fluid in lungs) took her back to the ICU. After a week, a disappointed group of ICU doctors met my question of pulling her plug with a nod instead of a head-shake. When a family loses all hope, doctors fight for their patients to live. It’s truly noble and at the same time painful when you know that they have given up hope too. I would trust those doctors with my life any day just like mom did.

I had a few hours to make a decision. I called a doctor friend who worked at the same hospital, had her meet the ICU doctors. She came to me as I was sitting by mom (who was in her 7th day of deep slumber) and said, “It’s not really going uphill from here, Deepika. You’re not going to be in the wrong if you put her out of her misery. Don’t worry, it’s the right decision.”

The right decision, or wrong – feels a little inconsequential to me. It’s the fact that I had to make this decision that eats me up every day. And even after her ventilator came off and I sat beside her bed watching her continue to breathe, I didn’t think that she was breathing her last. It felt like she was going to wake up. I sat beside her for the next two hours when the nurse asked me to go and get some sleep while she bathed the other patients. I walked back in 3 hours later, ignoring multiple signs that she was gone, only to see her calm, cold, and finally at rest.

It’s going to be three years on September 12th, 2020 since I last saw my mom. I still have sleepless nights thinking about her. The sound of ICU monitors beeping ring in my ears till today. I don’t recall much of her before her hospitalization. Even though her glory days were extremely beautiful. Within the next 17 months, dad followed her after suffering from heart failure. I was too exhausted to do much for him and was always the recipient of his anger and frustrations. He was mine too, no doubt.

Quite frankly, I didn’t have the emotional strength or physical energy to do this all over again. I was doing my transactional bit – visiting him in the hospital, staying overnight when he had ICU admissions, blocking my mind to feeling the constant trauma when I would enter the ICU and listen to the monitors beep again. But I was out of it after the first month or so. I am grateful that my sister and dad’s brother were around to take care of him and this time, I had no problem relinquishing control over his care either. I felt helpless when he was in the hospital. He died without much noise and pain (I hope so). It was during a routine hospitalization to treat his heart. I left for home at 10:00 PM after meeting him. I got a call from the hospital at 1:45 AM as I was having my dinner.

I reached at 2:15 when the doctors at the ICU had already tried to revive him for the third time with no success. “Time of death 2:20” I heard one say.

I didn’t like him much because of events that transpired over the last few years before mom and he both passed away. I was mostly annoyed at his fickle behavior. I was angry with the way he conducted himself and belittled me when I was caring for my mother. And I harbored this dislike for him during the months I stayed with him after mom passed. It didn’t work out and I ended up leaving (or ‘abandoning’) again. He was a good human being. Just very difficult for me to handle. I don’t cry over his death as much as I do over mom’s. I sometimes cry over being parent-less because that’s hard to believe when you grow up with parents who were always larger than life.

I consoled myself by saying that it’s all probably for the best. They spent much of their married life apart from each other when dad would travel for work. Now, in death they were finally together. I do feel happy about the fact that I got to donate his cadaver to medical sciences. Something I wanted to do with mom’s too but after a two-month mind-numbing experience, it seemed petty to fight my religious relatives over her cremation, so I let them win.

Over the last year, I have made many attempts to write this account but never found the words. Recently, I was talking to a friend who had just lost her father very suddenly after he underwent a routine angioplasty. Her dynamics with her parents are of course very different from what I had with mine. But when she said, “I don’t know how to talk about this with people because they can listen but not understand. I can’t be morbid because they don’t know what it’s like to lose a parent and I don’t want to make them uncomfortable.” My response was spontaneous, even for me: “But I get it. No matter how morbid you want to be, there is nothing about this you can say that would make me uncomfortable because I’ve lived it.” Her reaction was like on cue; she immediately burst into agonizing tears while I was able to hold mine back and just absorb what she had to say without getting too affected about it. And I think that that’s the power of grief. You can share it, you can embrace it, and you can make unlikely connections through it.

After mom passed away, I felt the need to start a support group of sorts for those caring for loved ones with renal failure. I never got to it. After talking to my friend, I realized that I still want to help and be of some support to those dealing with grief, the guilt that comes with it, the tearful nights and depressing days, the inability to talk about it, finding balance in life, and embracing morbidity rather than putting up a façade of strength without actually feeling it.

I have cried a lot in the three hours I spent writing this. I cried a little more as I went over it and edited. And apparently, according to Jason Berek-Lewis, that’s what adds some credibility to writing about grief. If support is what I can offer, writing is how I can get started. It’s taken me three years to pen this down because I didn’t entirely know how to express my grief. I guess no one ever fully knows how to. But I can say now that it’s just something I am going to live with forever and it has become a beautiful part of my life, like everything else.