The real meaning of Life…outside the ICU
I want to share what I went through in the last 50 days while my father battled for his life in the hospital. It has been 10 days since we brought him back home, and its indeed heart-warming to see him make rapid progress…..In those difficult moments, I realised there are very few platform/communities where you can seek help or reach out to people who have undergone similar challenges with their parents/dear ones. I would encourage you to share your thoughts and also let me know how we can build a self-help community where people can lend their shoulder to one other.
Background about my father
Just to give you little background about my father,
Papa did his education from Kanpur and his eldest brother was a great source of inspiration for him. Honesty, good behaviour and focus were some of the great qualities that my Tauji (his elder brother) had instilled in my father at a very early age. Qualities that would pay rich dividends later. Tauji had written a letter to my father in 1964, which he always treasured, and would read it once in a while to draw inspiration.
He retired from IARI — Pusa Institute as a Professor, in 2002. He did his MSC. Agriculture from Kanpur and PHD in “Genetical Investigations in China Aster” from University of Agricultural Sciences and has been a prolific writer, having authored many articles on floriculture in leading magazines. A fine human being to whom, being helpful was just second nature. Over the years when I did get to interact with his students, colleagues and friends alike, it left me with many proud moments as his son. In addition, he has always been very calm, organised, and punctual to the T. I have very fond memories of my childhood with him and I have shared some treasured moments here. From him, I have learnt a lot, and continue to do so, even while he is bed-ridden. Just a few months back, he was actively contributing for some of the social causes like Bharat Vikas Parishad and the Rajput Sabha, and zestfully playing a role in the temple committee as well. He liked to go to each and every invite, attend to social calls, and would be the first person to visit if someone fell ill or wanted help. He could not pick up tech, and was always intimidated by net-banking or the ATM card, as few years back someone had fooled him and sold few policies, club memberships which were not worthwhile. Few months back, he contracted chikungunia, after which his health had deteriorated. Joint pain and the onslaught of strong medicines had weakened him considerably. Being a diabetic with high BP, things only got more complicated.
The stroke and its aftermath
On the morning of 8th January, we interacted for a few minutes, as he wished me his customary good luck for the day. He spent some time in the garden and attended to a few guests at home. He read the newspaper that morning, sitting out in the sun, sipping his morning cup of chai.
Around 1:10 PM, when my mother wanted to serve lunch, my father said that he wanted to go to the washroom first before his meal. After 15–20 minutes my mother realised that he had not come back and she tried calling him, but there was no response. She called my wife and then both of them tried reaching out to him frantically. My wife went and tried from the other door, and though she could hear my father, but his voice was not clear. She quickly tried from an alternate door, and luckily enough, it was not fully locked. It was a shocking sight — as my father lay supine and motionless on the floor of the bathroom! She screamed in deep anguish for help, and with the aid of our tenants, they tried to put him on the bed. Barely audible, he was trying to say something but the speech was slurry. Hurriedly, they organised for a cab and went to the nearby hospital where a check-up was conducted. The doctors advised him to be taken to Max hospital. I was in Delhi, but by then, had already started for the hospital. I had requested one of my friends to help my mother & wife and I remain ever grateful that he was able to be of assistance that day. By 2:45 PM that day, we had him admitted to Max Hospital.
Life in the hospital
Dealing with a combination of uncertainty and helplessness is really hard
After the initial diagnosis — CT Scan etc, it was evident that he had a brain stroke which resulted in a massive clot formation. By around 4 PM, both my sisters, and my brother-in-law had also reached hospital. All of us were together but hardly the circumstance one hoped for in our uncertain existence. Most of us got to spend some time with him in the emergency ward. He was trying to explain what had happened to him in the washroom, but again it wasn’t clear as his speech had become slurry. By 4 PM, he was admitted to the ICU. The doctor (neuro physician) did mention that his condition was critical, and in as many words conveyed that the chances of survival were not too bright. I did not inform the seriousness of his condition to my mother and other family members. I kept this as a secret.
The next two days were the most eventful ones in my life. He made some progress and was shifted to HDU. Though we did get to meet him in the morning and evening, he would see us, say a few words which were not clear. He was overwrought with shock and disappointment about his own state of helplessness. At times he would not even make eye contact. After four days, he was moved to a room, and we were told that he would be discharged in 2–3 days. We were overjoyed that he would be coming back home. By then, a few of his friends, family members started visiting us in the hospital. He smiled when he saw some of them but after which he would close his eyes and sink into self-inflicted guilt. Needless to say, it broke my heart everytime to see him lying there, the pillar of strength that I had always known, and to some extent taken for granted.
My sojourn at the hospital started. I would sleep there and come back home just to change, take shower, etc.
From the sixth day onwards, he was perpetually in deep slumber and our efforts to wake him up proved to be fruitless. The doctor too would examine him only twice during the day and at all other times, he was taken care of by the nurses. I had to escalate this matter, as I felt he was not getting the right treatment. In a few hours, he was moved back to ICU and we were told that his condition was deteriorating. By then I was in a confused state of mind and a nervous wreck at that. Intermittently, the doctor/staff would get the consent forms signed, only to explain briefly about his condition and what they were planning to do. They had suggested that a tube be inserted to suck the blood out which was causing all the damage. I was ok with the suggestion, as according to them there was no other option. I did take some advice from few friends, cousins, but was met with conflicting views which only added to the overall confusion. At this point, I thought it wise to go by the doctor’s advice rather than seek amateurish opinions. It was tough but I had to do it. After the surgery, his condition worsened, and it was a ghastly sight to see his body getting pierced.
We didn’t have any other option, so we went ahead. Afterwards, we would just get to see him sleeping most of the time. Most of us would see him in the mornings or in the evenings — his condition remained same. For many days, we just saw him sleeping, and constantly checked to see if his eyes were open. Alas, he would just not make any eye contact! The status remained unchanged with very little hope/help coming from doctors. It dawned on me that the doctors become mechanical and just focus on the process. I have to say this — they really were not putting their heart towards the patient. I also realised that hospitals were never created to help people facing dependency in old age. I felt, the treatment should be very different for elderly patients, and they should not be treated in such a mechanical manner.
For many days, we would see the same set of visitors outside the ICU and most of them were surrounded by relatives offering free and often unwanted advices, suggestions, etc. When I would walk in the ICU, I would try and see the other patients, and pray for their speedy recovery as well. I felt a strange sense of bonding. Perhaps pain and hardships bring people closer than it is ever intended!
For me, life had turned on its head in 2–3 weeks. I was oblivious to the world outside the hospital. I would only get to see patients in ICU, their relatives waiting at CCD or in the cafeteria. Groups of people huddled together became a common sight and normally one of them would be giving advice. I was swamped with calls every day, and some would call even twice daily to find out the status. As if, I wielded a magic wand!. It was getting incredibly tough for me seeing my father in great pain, and at the same time having to answer “What is the progress for today?”. I didn’t know what to say, as he was not making any progress. Neither did I want to lie. A strange predicament. I realised that most people were genuinely trying to help and calling me up, was their way of lending support. But, I wanted to be at ease and didn’t want to be disappointed by saying no progress…so lot of times, I would just ignore the calls. I could also see many relatives, friends, etc making a trip to the hospital and doing a formality of seeing my father. I realised that I had also done the same many times in the past while visiting relatives, friends in hospital and yet after that, I never checked back on how they were doing. I realised, how important it is to make a meaningful conversation and say few words which you really mean. I know many of my friends would send in their prayers to me every day. It was heartening to get a lot of support from friends, colleagues, etc. But few people, I always thought would call me up or would come to spend time with me at the hospital, never showed up…it’s sad…but atleast I got to know who my true friends were.
Many of my friends also called me to check on how I was doing financially and they were willing to help with the hospital expenses, and some of them also wanted to pay for the medicines etc. Luckily, since my father was a govt. employee, he was covered under CGHS, but being an apex body, it was not a cashless experience. I am hoping that it will get reimbursed, but I would really like to thank all those friends who offered their unconditional and selfless help.
I had lots of time on my hands, since I had taken a break from iSPIRT. I would read up a lot of books, lots of articles on the net, and would also read about death, what happens to our souls and all of that. I know it was very difficult for me and my family, but my father had prepared us for the worst. I did enjoy reading “Being Mortal” by Atul Gawande which turned out to be a very nice book. I tried looking for people with whom I could share my innermost feelings, my deep fear and insecurities. People who have undergone such harrowing experience. I realised, there was very little information/communities which offer some kind of help / support to people who have been in a similar situation. I was thinking of writing some specs which I could share with Shashank of Practo or similar platforms which could build this community layer for people like me.
The nursing staff has been always kind and I think they do a good job, but I felt some of the doctors were not professional and did not really put their heart in what they were doing. I guess they were in the wrong profession, probably their parents wanted them be a doctor and hence they became one. It is always important to put your heart and soul in this profession, otherwise it is impossible to do this job. I think I found only 10–15% of the doctors, who were trying to put efforts towards my father, the rest were busy filling forms and following a laid down inflexible process. I think the doctors should focus on healing and should just not only be focussed on prescribing medicines, etc. I guess they have become too commercial and mechanical….can’t blame them…but I was sorry to see this state :(
Too many advisors…Dealing with relatives...
One of the things, I would get day and night was advice. A lot of people just came randomly and said things for the sake of saying. One of the doctors in our family suggested that he was not getting the right treatment and should be immediately taken to Ganga Ram or some other hospital, that, ICU was a money-making machine. Many of them would come and tell us to take a second opinion, start sharing their own opinions on what needs to be done. I had to politely decline their advice and also ensure that they don’t get hurt. At times, I had to be harsh as they would not listen. When they figured out that I would not take their advice, they would start suggesting it to my mother. I had a heart to heart chat with my mother asking her to believe in the doctors and that she should put her faith in me.
I also started taking help from Dr. Ravi Malik from Radix Healthcare, father of Ritesh Malik and they were kind enough to make a trip to the hospital and put in a word to the doctors and meet my mother as well. She was assured that he would be given the best treatment. At times, the assurance and few words of encouragement are what we really need. My mother was very comfortable after that and remained focussed on the prayers thereafter. I think it is always good to take advices/suggestions from the expert and in many ways it should be only 1 person/doctor. Taking advice from multiple people can confuse the heck out of you, especially if you are not an expert on this subject. I think the bigger piece is belief in the doctor. Many a times, I just believed that the doctor would give the best treatment to my father and didn’t question his ability. I think the issue comes when we start doubting their intentions…
Back at home now…and every day is a celebration
It’s been a tough 2017 for me and my family. My father was discharged on 18th Feb. We have created a mini ICU at home; we have got a 24/7 nurse and we are enjoying the time that we spend with him. He is making some good progress every day and the entire family is feeling good about it. There are lot of friends, family members who keep visiting him and he feels good for few minutes, but after that he feels depressed. I think many people don’t know how to talk to someone who is ill. Some of his friends also talk about this inability to speak, stand, walk, etc in front of him and he gets depressed.
I always talk to him about the good time that we have spent with him, I do read up some of his articles, his thesis, show him his old photographs, play some bhajans for him. Basically, I feel he needs to hear good things and be positive about life.
I did maintain a daily log about the progress he makes and if this helps in anyway, please feel free to read it and share your comments below. I have learnt a lot in the last few weeks and have taken responsibility for many things which I wouldn’t have taken otherwise.
Just ending this sharing with 3 things that i picked up from this:
Don’t forget to tell people how much they mean to you. Remember time is precious.
Always save for the rainy day, u never know when you might need it.
We inherited a legacy, and soon it’ll be time for us to pass on the baton. Spend sometime in thinking how the baton would look like.