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Warning: Bitter post
After my father was admitted to the ICU on 27th September, 2020, we had to face a barrage of insensitive questions. Sometimes, in dark times, we see a glimmer of hope, a little ray of sunshine, hope and a good soul somewhere. Here, we could not find anything like that even remotely 😦
Looking back, I do understand that the entire medical infrastructure is under stress because of COVID turning all our lives upside down. But total lack of sensitivity to a patient and their family was shocking.
Initially, my father was in the emergency room in a critical condition before being moved to the ICU and my mother was asked questions like:
“Do you have sons?”
“Who will pay for his medical bills?”
I am not sure whether this is an apt question when a person is fighting for his life and is under respiratory distress. A doctor’s profession, I have always thought is a very noble one. Yes, I have heard many times, that doctors are also only human beings, but asking such questions definitely shocked us.
The only thought that crossed my mind when I heard these questions was whether all sons in this world are looking after their parents perfectly and all daughters are abandoning their parents totally? Is this an Indian mindset?
Anyways, coming to the question, they did not know about my father’s “independant nature”! (he paid all his bills on his own ultimately, he did not need anybody’s help)
The brutal questions and comments did not stop there and it continued as he was in the ICU.
My father was soon shifted from the emergency room to the ICU because his condition was critical. He stabilized after a few days and he needed to have a surgery to help him breathe on his own.
When we went to see different medical practitioners before the surgery, while some of them said they will do their best, others wrote these words in blunt terms;
“Death on table can occur, internal bleeding can occur” and wrote all pessimistic things in the medical dictionary and we were expected to sign it, so that they were absolved of all their responsibilities! Saying such things was brutal enough, but giving it in writing was beyond words( yes, truth had to be told, but not in such a way)
I could not imagine if this was the way things were done now. Were we out of the medical loop? We didn’t know if the medical world was always like this or was it in a special avatar because of COVID stress.
While, all of us knew that my father was deteriorating – a little, calm, composed talk was all what we needed to hear.
“He is critical – but we will do our best”
Is what I was yearning to hear, but never heard.
In the 2 weeks that my father was in the ICU(we could not meet him in person because of COVID, only video calls were allowed), I was the person who was constantly motivating them to never give up hope! They were only preparing us for the eventuality. I almost felt that the medical team gives up hope once a person is aged and has co-morbidities. They immediately stop fighting for the person. We could not understand how a life could be taken so lightly without a fight.
Improvements in the ICU:
While he was in the ICU, after the initial rough days, my father’s condition stabilized and he was soon following people in the ICU with his eyes(that was big milestone for him) and showing small improvements.
With all the hope and constant video calls he learnt to recognize us and even spoke a few words to us through the video calls( his brain definitely started to work a bit more)
In the preceding evening before he passed away, he recognized all of us through the video call and when I asked him “How are you?”,
He said, “I am fine” (I could almost cry that day when he told me “I am fine” – when the doctors had given up hope and he was hooked up with tubes and wires and was in the ICU) Well, that was my father…never giving up hope and always saying positive things..
Unfortunately, he suffered a cardiac arrest the very next day morning and he passed away. Even then, I was called first as he was having his cardiac arrest and told to prepare for anything. I did not understand that either – why should one make a phone call when one is doing CPR on a patient? Is this the way it is supposed to be done?
The same evening, except for 2 rituals, we daughters also did all last rites for my father ( I am sure he would have not wanted it any other way)
Life after my father:
After my father passed away, I was totally mad. Why? Because – I felt more could have been done. We would have felt more relieved if there was more “try” in the picture.
A bit more calmer now, I do understand all doctor’s and their woes in these trying times. We are very thankful for him getting admitted at least in a hospital in these difficult days. But I definitely do not want to see anybody suffer the way my father suffered. To prevent it all, I could say a few things definitely for elderly parents:
- Find a doctor who believes in you and whom you believe in
- It is always good to eat a proper diet and manage whatever exercise can be done(that of course goes for any age, I guess)
- Break the stereotype- whether sons or daughters – if you can and are nearby your parents and they need help, please look after them. Don’t wait for the brothers to go running to them.
- Early detection for any disease is absolutely important
- Any medication changes should be done in a careful way
- Neurological medications are very powerful – use them with care
- With today’s medical billing, fees will run high – be prepared for it
- And you only have one set of parents – fight for them !
- God is there!
As for us, behind all the social media smiles and emojis, everybody is learning to heal but in a different way. I always remember his teachings and propagate them to my children(they know it already!! :)) For me he is always my “Super man” who is always shining light on my path. I know what he will say for each of our actions as he is watching and guiding us in our journey. He will definitely be proud of how tough and strong we are in difficult times.
These 3 writings do not do full justice to the person my father was. It is just a small drop in my father ocean and I am sure he is proud of all of us and the way we are trying to move forward in life!
PS: The medical fraternity never found the reason for my father’s respiratory distress. It was just blamed on Parkinsons disease.
Love you appa!! There can be no one like you!!
Other thoughts on my father: The cruelty of Parkinsons disease
My father was diagnosed with Parkinsons disease in 2014. I wrote a post about Parkinsons disease which is available in my ebook. Parkinsons is a neurological condition that affects the brain and slowly robs the person of their abilities to do a variety of everyday tasks which is chiefly characterized by tremors(buttoning their shirt, dressing themselves, taking bath, eating on their own – all become difficult after a while) In India, unfortunately awareness about Parkinsons and Alzhemiers disease is poor. Having lived in the US I knew a lot about Parkinsons disease and Alzhemier’s disease. Research is continuously ongoing in these areas to alleviate the difficulties of those who are suffering.
2014 – 2016
My father was in denial for a long time and he was on the lowest dose of Syndopa (the most popular medicine to treat Parkinsons) for almost 2 years. He still hadn’t visited a neurologist and maintained his almost normal routines.
Through the 2 years, his walk changed and I was quick to notice it even though we visited him in Chennai only occasionally. His type of walk was known as “shuffling”. His balance was also getting more harder. He slowly reduced his outside walks because he knew something was definitely bothering him. He very rarely complained about his physical difficulties and the only thing that he told me once was that his limbs were feeling “stiff”( a totally Parkinsons condition)
We never really understood what was hard for him and what was easy for him as the days progressed. We just had to take a guess( he won’t tell – are all men that way?) As an example, if he was not interested in looking at the books that he used to love to read, we have to understand that he found reading difficult. If he was not reading the newspaper, we had to understand that he was not able to read the newspaper. If he did not go for walks outside, we had to understand that he found walking difficult. They say women are hard to understand, but we three women could never decipher my father !
He finally did visit the neurologist around 2016 and his medicines were properly adjusted. He seemed to be walking much better for some time. In the meantime, he also did his own research about the disease and cut out newspaper articles and understood that in addition to medicines, it was exercise and physical therapy that will help him.
Thankfully, he never had bad and visible tremors (his type of Parkinsons was known as ‘Vascular Parkinsons’ is what I learnt later, which affects the lower body more than the upper body) In spite of all the medications and physical therapy exercises, he soon had numerous falls in 2019. He was lucky that in each of his falls, he did not suffer a fracture. After a long time, he understood that this was a monstrous, irreversible and progressive disease. He finally agreed to move closer to where we stayed so that we could all fight this monster together.
2019 and the move:
This was probably the best thing for all of us as we could care for him with all our might. He was at the happiest and simplest best for almost 9 months. His health picked up and he was decently independent inside the house with the help of a walker. Everyday, I used to visit him and he used to welcome me and we used to gorge on my mother’s yummy food(even though, both of us were trying to lose weight!! :))
In the mean time, he did have other age related issues like dementia. He did forget a lot of things but remembered his bank days from 20 – 30 years ago. The Parkinsons medications used to give him a lot of confusion too. But we just adjusted and helped him along instead of putting him on more medications.
By late July 2020, a small trigger caused a cascading effect of bad reactions on him. He started to sleep more and more and his brain started deteriorating rapidly . Since, COVID was running the show, we could not take him to the hospital as freely as before. We did numerous video appointments with the doctor and we were quite confident that he will get up soon.
He did talk freely when lying down though his speech was increasingly getting slurred.But he was vocal and could tell the tastes of different food items and used to crack jokes here and there. We still did think he would get better all along and the physical therapist did come regularly all through August.
Then, started the respiratory issues. We had no idea, where those respiratory issues came from(no, he was COVID negative – we had kept him safe to avoid any other health issue) His respiratory issues were bad when he was lying down(and it was diagnosed as sleep apnea) Our video appointments with the doctors continued. COVID was at its peak in September in India and in spite of having respiratory distress at that time, we were never asked to get him admitted at any point of time or even be seen in person at the doctors ( maybe because of COVID? – we never understood why)
By early and mid September, he started deteriorating even more. There are no words to explain what he underwent in mid September. His brain was suffering a lot and it pained us all to see him that way. He had involuntary movements of the eye, hands and head. We tried our level best to keep him happy and talked to him all the time. In spite of all the dementia, he never forgot the three of us and recognized us any time.
By late September, we knew COVID or no COVID, he had to be admitted to the hospital. He was taken into the ICU on 27th September after battery of heartless questions at the hospital.
Up next…’Where did humanity go’?
Previous article about my father: Celebration of ‘Appa’!
I cannot write about my father in a single post..rather, me, my mother and my sister and the entire family will need several books to write about him. That is how much he powered our lives and kept us going…..he was the role model for me and many of us all of our lives!
He was witty, far ahead of his times, always thinking out of the box, terrific orator, a social butterfly(now you know where I get my social skills from!! :)) and just plain smart!!I was a total “Daddy’s girl” and he molded me completely…
When I was young, I used to tell my mom that I wanted to get married to somebody like my father 🙂 I adored him that much… (no, my husband and my father are similar but still dissimilar in their ways and I liked it that way, finally 🙂 )
His younger days:
My father was never an emotional person(atleast, not in front of me!) and we had never heard him talk about his younger days. He was just determined to come up in life and so he stepped out of his parents place at a certain point to make and carve a name for himself!
He motivated himself to prepare and study for the State Bank of India Probationary Officers exam and got selected right away!(this was way, way long ago – when not many knew about the PO exam) There was nobody in the family who was in the banking sector till then – so he did it all by himself due to sheer self motivation.
Even though he was from a small place in Tamil Nadu, he also made it a point to study and excel in English and he did with flying colors. He could talk in English eloquently and made sure that we both daughters were also educated in good schools and spoke excellently.
How he brought us up:
My mother was always the pillar behind my father and she used to admire the way he brought us up. He was not the shy looking-from-far father – he was a father who was very,very active in his children’s lives. These were just a few things that he taught us that still ring in my ears:
a. Be smart and independant:
My father always instructed all of us in the house to be “independant” and “smart”.
“Be smart, ma” or “Smartaa irungaa, ma”….
“Be independant, ma” – his voice would go and we would wonder what that really meant! (now, we know)
b. Dress well:
He loved anybody who was brave and all who dressed up well. For him, if it is a shirt, the collar has to be pulled down correctly..otherwise, he is not going to be too happy. If it it is a school uniform, clothes have to be neatly ironed and tucked in properly.
I was encouraged to do beauty treatments(but me being me , I was hardly interested!!) He always admired my mother’s way of dressing up and encouraged me to dress like her(but, me…ha, ha!! :))
c. Good role models:
In my younger days, he used to like Steffi Graf and soon I was also encouraged to like her 🙂 We rooted for her in all her tennis matches!! He would select nice role models for us (like Graf) and encouraged us to emulate them. He always wanted the girls in his life to be tough, strong, smart and independent and be successful in life!
d. Read good magazines
Since the world was very small when we were young(no Internet then), he bought us magazines like Femina and Women’s Era and encouraged us to look at the world in a wider way.
e. Don’t dwell:
Since we were 3 women in his life, we would have emotional party every now and then. But he was a very patient father and husband and never reprimanded us for drowning in our pity party. My foot surgery and the confusion after that severely jolted me. He waited for almost a year, till I drowned in my worries and then told me firmly, “Enough of thinking about the same thing again and again…now, move on” . Yes, after a while, he did not like to dwell on the various ifs and buts…
f. Plan and organize
He was a dynamic personality who grew by leaps in the banking sector. Since he was in a transferable job in the bank, we would get transferred every four years and that led us to travel to North India as well. He used to go first to the location and did all the planning. He did do a lot of research on the schools nearby, find a suitable accomodation and then shift us.
I had a sudden move from Chennai to Mumbai and had a tough time adjusting from Tamil to Hindi in 5th grade. But he knew it all and found tuition teachers to help me with the transition.
This type of research continued into the college years too. Before I was set to enter college, he used to check which subject will rock the world in the coming years( and this was 1989!) Surprise, surprise – it was “Computer Science” that was said to change the world and soon both of his daughters were studying that in college(he was far sighted, I tell you!)
He always maintained a neat diary where everything was written and planned.
g. Other funny tidbits
When we used to go to a Bata store to buy a shoe, we “had” to wear the shoe/chappal and walk up and down and show it to him… it is not short walk that we have to do – we have to really walk the store…:)
His favorite saying was always “The proof of the pudding is in its eating”
He was amused by the birthday/anniversary/Diwali wishes every year that appear over and over again ever since Whatsapp came into existence…he used to ask me “It comes every year – what is so special?” and now, even I wonder the same….
When he spoke, you couldn’t help but listen to him. He had amazing oratorical skills!! All my friends from school knew him, all my friends from college knew him and all my friends from wherever I stayed knew him … and he knew them all too! 🙂 He loved just the aspect of people. My paternal grand parents family, my maternal grandparents family – there was not a soul who did not come to him for advice or a nice talk.
He also had every girl relative in the world. He was blessed with an elder sister, younger sister(amongst other siblings), wife, mother, 2 daughters and 2 grand daughters and all of us dearly loved him. In fact, there cannot be a single person who couldn’t have fallen in love with him!
In spite of talking so much, sometimes, I think I hardly knew anything about him – I didn’t know what his favorite color was, what his favorite hobby was (he used to like to read books) and more. Did he really like Chennai? Did he like life in the bank? Did he like to study history?(he was M.A. in History) What did he really like? I was the one who used to keep questioning him all the time!! 🙂 But the answers were vague…I didn’t know -but my mother might know…
Anyways, he was always the magician who could solve all our problems.Even after we got married, we could run to him and my mother for anything and everything!
School admission – he was there, college admission – he was there, when his grand kids were born – he was there, he was just proud of whatever his daughters did…and he was the rock for us all…
He loved all three of us in different ways and all three of us loved him in different ways. We will always love you and we will always miss you appa!
Dedicated to my father who passed away on 11th October 2020
Next post: The cruelty of Parkinsons disease
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