The final journey

It is not easy. To be 80, weak, not understand what is going on, feel pain and not know the reason why. But life takes you there. If there is one absolute truth I have learnt in the past few weeks, it is that pain is universal. Pain does not leave you till your last breath.


A few weeks ago, we brought my parents’ home. Settled them down in a nice airy apartment with attendants constantly managing all their needs of food, sanitation, entertainment and health. I would see them every morning before leaving for work and every evening after coming back home.

First week was relatively good. Baba kept on “Umaji’ing” for a while, he would want to watch “romantic movies” on the television, would want to go to the bank to get “taka” since he knew he had to pay his attendant when she shaved him. His diet showed a marginal improvement.

Second week he had mild cough and the doctor gave him some antibiotics. He was weak but his diet was ok, his fever subsided quickly and he was ready to start his physio end of the week.

The physiotherapist took one look at him and said he is too weak, but we can try. And he did try to stand on his bony legs, did all his exercises mostly passively, resisting when it pained making a grimace. That was the last week he stood on his own two legs.

The fourth week everything changed. He was drowsy. He slept through the day and the night. He slept like never before, like a child who had been deprived of sleep for ages. For a person who mostly needed meds for sleeping this was absolutely alarming. You had to wake him to feed him, he would open his eyes with effort and promptly go to sleep again with his mouth open. I knew this was not good. We got his vitals tested. His physician said he should see a neurologist. We spoke to a couple to come home but then nobody was willing, and we toyed with the idea of taking him to the hospital for a proper neurological checkup.

Friday 3 July evening, Baba started sinking and perceptibly gasping for breath, his oxygen level and pressure started dropping and we had to rush him to the hospital. He was put on ventilator and taken to ICU. He stabilized for a while there, BP and saturation came back to normal but he was unresponsive, drowsy, kidney functions not normal, creatinine was rising, sodium was high ( Having dealt with multiple patients at home, I am an internet-trained-quack myself). His Brain MRI spoke volumes. It basically explained why he sometimes thought he was 40 and sometimes 90. Part of his brain were not functioning (lacunar infarct) due to some emboli that may have happened maybe sometime in the past 3 months.  My brother, husband and I, all silent witnesses to everything, there was nothing we could really do.

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ICU is terrifying. I witnessed two demise right there in those fateful 5 days. Heard stories of people with serious illnesses, dealing with far more issues, people who were there for weeks and months, people who had still not given up. It is all so morbid and makes you feel completely helpless. What can I do? Nothing except wait day and night outside the door to see the doctor and find out how he is, any better, with hopeless eyes. Go in and see him with multiple tubes sticking through him and machines living the life for him, swollen arms and feet, drowsy eyes, haggard cheeks, blank eyes. The sight was drowning me, and then saying with a smiling face- Good Morning, holding his cold hands, reminding the nurse to give him 2 blankets since he would find the place very cold, gazing into his eyes to search for that spark of recognition, which never came.

Tuesday evening 7.30, his doctor gave his verdict. He did not mince his words. He said Baba is terminal. Multiple organs were failing and he did not expect a recovery. And then he asked- what do you want to do. And we said unanimously – we want to take him home. I had promised my mom I will bring him home. She had been looking at the empty bed every day with tearful eyes and a questioning silence. The doctor said- That is what I wanted you to say. And we brought him home the next day, with little hope, but a strong resolve. I have been told that is a very brave thing to do but I did not really feel brave, I knew he was slipping away and I wanted him next to Maa.

8th, we brought him home for the last time. We were so relieved that he was breathing well without the ventilator, he opened his eyes, looked at everyone and everything. We had so much food that day, like we had been starving for days. Got his meds and air bed and oxygen concentrator and everything else he would require for the next few weeks. Wishing for a few more days of life.

He had his feed and medicines, all through the pipe and went to sleep at around 9-9.30 pm. We went for dinner. 9.40, the nurse called, he is not breathing. We rushed. His pulse was normal, his oxygen level was normal, but we could not see his chest heaving. None of us had witnessed death, we kept on looking for the heartbeat, trying to feed him water so that he would pass urine, shaking him to see if his eyes would open. He looked so peaceful, and I could almost imagine him suddenly opening his eyes and smiling- Oh I gave you a scare, did I? But that is filmy. 10.30 the doctor came. The world had turned hazy and timeless by then, everyone was talking but I could not hear a thing, it is like I was going through a sound barrier. The doctor did his duty. My mom did not cry. She still has not cried.

I have been haunted by the if’s and maybe’s. If I had brought him here earlier, if I had seen the issues early enough, maybe if we did not bring him home and was still in the hospital. Running to Jodhpur every month for the past few months had become a habit. People tell me he is at peace, he has handed over Maa to you and he has seen everything with his own eyes and hence he is relaxed. But I am on a guilt trip, guilty because I breathe, eat and sleep and work and watch TV and go about my normal duties. Guilty because it is too soon. Guilty because I always focused on Maa more and refused to understand Baba’s depression. Guilty because I was powerless to do anything. This was not my will.

Looking at him just before cremation, and then what was left of him post that, I finally understand the meaning of dust to dust, ashes to ashes. I don’t know how many times I touched him that night, went to see if he was feeling cold, maybe he will wake up and ask why is the room so cold. As he was tied down to the – I don’t know what it is called- I was thinking it would hurt him, but he is beyond pain. As he was put into the electric pyre, I felt the burning sensation that he would feel. But he is beyond feeling. The realization dawned that I am never going to see him again.

Last 10 days the rituals have kept us all busy. Leaving with no time to think and mourn. Maybe that is the intention. That is what human nature is like, we move on. There are more important things, like taking care of my mom. So many people turned up at Jodhpur, his old friends, colleagues, the Bengali community and family. Oh he was so jolly, relived the pain  with them again as they spoke about him, cried and remembered all that was good about him. Crying is easy. Crying is selfish. I am not going to be selfish.

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It is strange to see everything around so normal. The sun still shines, the traffic is still the same, same serials on TV, but smiling is a little tougher, especially when I am alone. We talk normally, eat and sleep. I look at Maa and smile for her. She does the same, mentally we are both giving strength to each other. I know I will watch movies and go out for dinner and start enjoying life all over again. With my son here for his holidays, it is important to take care of the people who are alive and who need me.

Bringing Parents home

My mom, 77, a cancer survivor and as tough as dough. She has taken to bed the past two years, gained a lot of weight, refuses to stand and only says “Maa”, when she is happy, when she is upset, when she wants something, when she doesn’t like something. You have to recognize by the tone and context what she is trying to say and deal with it. If she tries to say anything else, it gets garbled up by the time it comes out and you can’t make head or tale out of it.

My dad, almost 80, was fine till about a couple of months back and then suddenly  went into a mom-effect. He lost a lot of weight, needs a catheter and is pretty stubborn about- I don’t want to eat, I want to see a doctor, I don’t want to bathe, brush, and only want “Umaji” who has been their caretaker for the past 3 years. He sometimes believes he is 48, wants a ticket to Bihar, talks about everyone as “rascals”, calls someone called “Robinson” and insists that he needs to visit the washroom every 5 minutes.

Looking at this state, we decided that staying at Jodhpur was no longer a viable option for them and planned to bring them to Pune to be close to me where they can be better taken care of. (I heard that my dad remarked- I am least interested to go to Pune.) The journey was the longest I have ever gone through. And I am not even talking about the work that was needed before and after.

I don’t know why there are no direct flight between the two places. After looking at all alternatives- shall we bring them by road in an ambulance – it will take more than 24 hours, ruled out, shall we get a charter flight/ air ambulance – after looking at the cost- ruled out, what about train – same issues as road and their decibel level will not let anyone around sleep,- ruled out. So no option left other than our very own Air India Jodhpur-Delhi-Pune.

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So, come Thursday, having mentally prepared them for the journey- don’t talk too much, don’t shout too much, the pilot may refuse to take us, we loaded them into the car to get to the airport. Remember that every load- from bed to wheelchair, from wheel chair to car, and so on- is a herculean task in itself as my mom does not support her weight. If not done right, with proper strength and in one fluid motion, she will slip down and then it will be 15 minutes of “maa” in loud complaining tone.

Reached airport with no incidents, got attendants and wheelchairs comparatively easily, breezed through security check etc and waited for the flight. My mom was excited, so many people, so much ambient noise, so kept on excitedly telling me “maa”. My dad was depressed. Umaji was not to be seen. He kept on asking for Umaji in an undertone,with me shshing him every now and then to keep the decibels down. Jodhpur does not understand aerobridge, so it was “दम लगाके हईशा” to take them up the stairs to the aircraft, seat them on the aisle and window seat respectively with me in middle. So far so good. Dad slept through the flight, mom was her excited self and we landed at Delhi an hour later.

Exiting after everybody else is way different from standing up as soon as the plane lands and pushing and pulling to get out first. Found some easy-chairs to wait for the next flight. By this time my parents were getting tired. Fed them some खिचड़ी . By now the “Maa” had turned to a wailing tone as she kept slipping down the easy-chair, could not pull herself up and neither could I. My dad, in his hyper state of mind, started calling out to everyone around – “ओ  gentleman”, “ओ  सरदारजी ” even after my admonishing tones of “don’t bother others, tell me what you want”, he would calm for a minute and start all over again. Couple of hours later, time for the next flight. Holding my purse and a cup of tea for both of them and intermittently pushing their feet on to the wheelchair platform which kept slipping, while shshing them and saying sorry to all passerby’s who were called out in a loud voice by dad, it was altogether very noisy situation and I was just thinking, when people make a spectacle of themselves, I am relentless and blog about it, might as well write about us being a spectacle.

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Boarded the next flight. Air India, intelligently, had given us seats in row 18 and row 8, even though they were wheelchair passengers. After a big fight, we could get 1 aisle seat on row 3, and then 1 more after asking for consideration from other passengers, so two aisle seats. The entire flight I stood between them calming them both (with the air hostess banging into me every time and asking me to sit down) , who were really agitated by this time, my mom’s hat kept falling off and she wailed loudly every 2 minutes. My dad wanted Umaji to serve him in the flight and kept asking the people around to call her. They refused to sleep. I kept on repeating like a parrot- a few minutes more, we are about to reach Pune, then you can go home and rest. They would listen disbelievingly, look away and wail again. finally my dad slept for ½ hr on the shoulder of the next passenger, drooling on him. Poor guy, not a word of complaint. He would even put his head back on the headrest as it kept falling down.

Landing at Pune was quite eventful. We landed and the pilot announced, we cant get an aerobridge because it is allocated to a Spicejet flight, hence we have to take the stairs, as per ATC. It took them 45 minutes to sort out the mess before we could disembark. The last leg of the journey to home was uneventful. Reached home at 8 pm, after starting from Jodhpur home at 11.00 am. As soon as they could lie down on a flat bed, both were quiet and relaxed slowly.

Making a joke of all this is easier. It prevents me from being depressed and crying. Every time I look at them, remember how they used to be and how they are, I want to weep. To see your parents reduced to being totally dependent for feeding, sanitation and every little need, they are like children who don’t understand and all you can do is not lose your temper (guilty as charged, there are so many moments I get angry, want to give up, be a good boy, I will take care of you, when they don’t understand, it is so depressing), be patient and help them relax.

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