RENAISSANCE - Post Brain Haemorrhage

The only outings our father had for the first few years were for treatments.   There will always be one as the flovor of the season – acutouch, acupuncture, varma or some such.   Temple visits happened only couple of times.  Our presumption was that the treatments would enable him to walk into a temple.  That plan was clearly not working. After similar misfired treatment plans in Kerala , there was little left to do than take him to the temples around Ernakulam, and take him we did, with unbridled gusto. To those unfamiliar with the Kerala temples,  almost all of them are stunning  be it in their simplicity or grandeur.   One of our visit was to a local Krishna temple.   We were at our unprepared best.   The driver, nurse and our father squeezed themselves into the car packed with my brother-in-law dental stuff, which left no room even for the wheelchair, forcing my sister and myself to carry it on...

Three months and two weeks since we have come to my Sister's place in Kochi.  How and why we got here is a different blog post.  A month ago there was one of the usual hartals in Kerala that gave my brother-in-law a rare day off which he did not want to spend sitting at home.  None wanted to go leaving the other with our father.  The best option was for all of us to go - parents, grandma, sister, brother-in-law, niece, driver, nurse and myself. Although it was merely an overnight stay at the resort we needed to pack supplies for our father - Diapers, rubber sheet, urine can, catherter, urine bag, cotton, gauze, two wheelchairs, couple of gowns, towels, enema can, sterilium, nebulizer kit, BP apparatus, thermometer, record keeping book, brushing set and lignocane jelly - just a few items. The hour and half drive to Kumarakom was pleasant, he sat next to the driver looking out through the window and munching Hide and Seek biscuits.  We made it there for b...

As a young family living in Andhra Pradesh in 1980s it would’ve been hard to miss movies of K. Vishwanath that are now regarded as classics.   His movies revolve around some theme of classical dance or music.   With no formal knowledge in this classical tradition, but with the ability to enjoy and appreciate art our parents were huge admirers of his movies.   By huge I mean diehard.  We watched the movie Sagara Sangamam countless time -  as kids we made multiple trips to the theater with barely any comprehension of its mature theme, as young teens at home it seemed entertaining and as adults and equals with parents we spent countless hours appreciating and sometimes explaining certain nuances.   Music from his movies was a constant on our record player. Now with all the post stroke rehabilitation we show, do and talk thing that we know our father enjoys.   We repeatedly played the scenes and songs from the Sag...

For the longest of times I have been obsessed with forming a support group for families with stroke patients.    In my conversations with Doctors, Nurses, Physiotherapists, and Social workers one of my predominant questions would be if they know of any families with stroke patients.    If they answer in affirmative, then they would be subjected to a barrage of questions.   What happened? When? Present condition? Who takes care of them? Which Neurologist is consulted?  Which hospital?  And the questions go on.  It usually ends with “May I have their contact number and talk to them myself?” If I do get the number, the families would be asked these and more questions.   In almost all the cases there has been a ready willingness to talk and share.   So now I have around 10 families or so that I talk to on regular basis.  Getting a call from them is a rarity, its usually me hounding them every now and then...

Our father’s lower teeth dentures were missing since the time of his hemorrhage.   They were removable; he was supposed to get them out every night before hitting the bed. We were on the lookout for them.  Well, to be precise my sister was.   She asked everyone -  at the first hospital he was taken to, to the neighbors who took him there,  to any and every staff who came in contact with our father at the specialty hospital where he was later admitted.  No luck.  Dentures weren't to be found.  We got home, months passed, urinary infections visited us a ton of times, my sister still didn’t forget the dentures.  I couldn’t understand what the fuss was all about.  Yes, our father could eat orally, but it was more of swallowing than chewing, so I didn’t see the urgency for tracking down the missing dentures. Bowing to the pressure from his wife and being a dentist himself my brother-in-law took our father t...

One of the persistent recommendations during our father’s ICU days to stimulate the unconscious brain was to repeatedly play his favorite music or a recording our voices.   Trusting a positive response to the music than to our voices, the choice of which to play was an easy one.  We did it in the ICU, later when in a private room, and also when at home. A cousin of ours gave us a CD by one of those new age teachers.   The recommended dosage to play was everyday for one hour and continue this for at least a month.  Did we follow it?  Ofcourse we did.  I read somewhere that classical music helps, especially with a varied tempo.  So Hindustani and Carnatic instruments would rock on in his ears when asleep.     It is beyond doubt for me that music helps and what we did helped.   Although I don’t exactly know how.  This seems to be the conclusion of most of the literature on music therapy  - very effective...

Although our father could swallow food in small quantities, he was mainly fed through the ryles tube.  With repeated episodes of him yanking it out due to discomfort and given his chronic cold, we were advised to have a PEG tube inserted in his stomach.    Apparently ryles tube is a temporary solution, not recommended for more than couple of months, if even that.   So we decided to have the PEG in place.  It's a fairly simple procedure, does not take more than 20 minutes.    There was a gastroenterologist in our hospital, whom I will hence forth refer to as Dr. G.  He seemed friendly and we zeroed on him to perform the procedure.  Dr. G, recommended that we get our father admitted a day before the procedure, then stay for another couple of days to monitor him.   Although the expenses for such a stay at this corporate hospital seemed daunting, we opted for it given it was for the greater good! Incidentally in Jul...

This is the second birthday for our father since the stoke.   For the first one we were still at the hospital.  Coincidentally some of his friends showed up the hospital, the staff had arranged for a cake, apart from which I had picked up a cake and some decorations.  So his hospital room was full of nurses, duty doctors, cleaning staff, family, friends and two cakes.   He wasn’t too alert, seemed like he knew something was up, we couldn’t tell for sure if he really understood.  This January 4 th was different.   There was just one cake and the room was decorated by our driver under the supervision of our nurse.  My sister and I put some balloons up and our physiotherapist showed up as we were getting ready to cut the cake.   A dear cousin sent a bouquet of red roses.   Our father looked around the room in amusement, cut the cake with enthusiasm and gave us a piece each.  A Happy birthday indeed.  

It was five days to go for Deepavali, our biggest festival.   It was the usual busy day, went to the Siddha hospital for a treatment in the morning, followed by physiotherapy, then some cleaning and we were resting for a bit around 4:30 PM when our nurse practically burst into our room saying something seems amiss with our father.  He was shivering like he was out in the snow with summer clothes on and had goose bumps all over.   The temperature reading showed nothing alarming.   I had seen him like this once before in the hospital when he developed sudden shivers and our surgeon mentioned it was a sign of urinary infection.    I was sure it was matter of time before his temperature shoot up.  It did, in the next 30 minutes.   The reading was 104 degrees.   This wasn’t neither unexpected nor were we unprepared.  Since we knew the bacterium Klebsiella Pneumoniae was happily residing in his urinary tract in larg...

Visiting Bangalore this weekend made me stop at the office of the Spandana Public Trust.   This is the organization that has provided us with two amazing live-in nurses since we got our father home.    Having spoken to them only over phone, thought best to put faces to the empathetic voices answering our calls.  Ms. Sunanda and Ms. Rathna, who always field the calls, were at the office on the crisp and sunny morning when I walked in to Spandana.   The office is a flat in an apartment building located at a quiet and affluent neighborhood of Koramangala.  There were some nurses waiting in the outer office looking for work.  Walls in the waiting area were filled with motivational posters.  Got couple of ideas on what it takes to be successful.  There were Spandana trained nurses sitting in another room waiting to be placed.  In a smaller room past all these room, both the ladies sat with a mobile and a landline each that r...

It was September 10, 2010 when our father had the brain hemorrhage in his sleep.    It was Ganesh Chaturti – this festival marks the onset of Hindu festival season which ends in January with Pongal.     A day of celebration since it was also Eid and Jain Samvatsari.  Also it was my parents wedding anniversary.   Seems like a good day to have the hemorrhage. This year September 10 th was low key.   None of the festivals fell on the day.  It was just the wedding anniversary.   Routine day – night nurse getting engaged, looking for replacement; maid on long leave of absence, looking for replacement; washing lady quit, looking for replacement.  Urinary Tract Infection (again), antibiotics course started.   All of us sleep deprived and running around.  But we are all together and highly grateful for everything we have.  Happy anniversary indeed.  

If I remember correctly, it was in the first couple of months after our father got discharged from the hospital that he yanked out the ryles tube in the middle of the night.   Our stay-at-home nurse wasn’t trained enough to insert a new one.  I called some nurses from the hospital.  No answer.  Since both my sister and mother were as ignorant as I was, thought best to leave them sleeping.   Having made lot of friends amongst patients’ families, called one such patient’s wife.   The only one I knew who would be awake at 2:00am. She assured me the procedure was easy, that she has done it herself and gave me instructions on how to do it.   Well, before I spoke to her, to my father’s great discomfort, I had just tried inserting it couple of times, not confident of the position, removed it.   After I spoke to her, inserted the ryles tube once again and sat looking at him all night hoping he wasn’t in any pain.   In...

Its been a rather quiet day.  Only one session of physiotherapy.   No Acutouch since its Sunday. He slept most of the day as the night brought him little sleep.   We - my sister, the nurse and myself watched a movie in the afternoon.    I write this sitting next to my father who is arranging alphabets while Beethoven’s Eroica (which my sister thinks is too dramatic for this activity) plays in the background.   Watching him arrange is an emotional roller coaster.  When he picks up the right alphabet we get euphoric and when he persistently fumbles we’re almost close to being despondent.   As I look at him,  he has ABCDEFGM, don’t know why he always gets M and N placed in all sorts of combinations.  Am not too worried since this is not the first time and we ain’t going to stop until he perfects it.   The persistent worry we have about his recovery seems to abate as we see small and sweet changes in him.  Lik...

It has been 10 months and 5 days since the hemorrhage.   We have come a long way but time has stood still.  Questions on his progress and our responses to them surprisingly haven’t changed.  Scary. Q : A well meaning person – How is your father? A:  Me- Oh good Q : A well meaning person – Does he recognize people? A:  Me – Yes, he always could. Q : A well meaning person – Is he talking? A:  Me – no, he still has the tracheostomy tube. Q : A well meaning person -  um! But he is eating orally yes? A:  Me – No. Silence Q : A well meaning person -  Can he walk? A:  Me – No. Q : A well meaning person – Does he sit up on his own? A:  Me – No. Q : A well meaning person – Does he leave the bed? A:  Me – No. It has been 10 months. Question / Answers - funny.  Really situation – sometimes scary.

While discharging our father from the hospital almost 4 months back, we had some sleepless nights and endless discussions on finding good home nursing.   After much looking around and talking we found two male nurses, one for the day and one for the night.  The night before the discharge, both bailed on us.  The reason – our father was not ready for home care.  Apparently the nurses differed from our neurosurgeon on the timing of discharge. We managed to have a lady come in on the first night at home.  She was slightly disoriented and was tired most of the night.  I sat vigilant watching her more than watching my father, and was constantly guiding her on what to do.  Decided to call it a night with her, the thought of monitoring her each night was unbearable.  Like a breath of fresh air an experienced nurse showed up in the morning.   She fixed everything – arranged the chaotic room, drew up a chart for medicines and feed, and too...

If I remember correctly, it was around the end of second week that one of the male ICU technicians informed us that our father opened his eyes.   My sister and I were ecstatic.   Having watched way too many Indian movies where eye opening by a critical patient only means that he would walk and talk in matter of days, we could phantom no different scenario for us. It was involuntary movement (the eye opening), when they changed his position in bed or made him sit on a chair.   We were of course delirious and distributed samosas to the ICU security personnal. Why them? I don’t know, we didn’t know anyone else at the hospital and we were happy.     Visiting hours were one hour during the day and one hour in the evening.    My sister would incessantly call him to open his eyes and I would try to block all the noise out and pry.   We surely were a spectacle during the visiting hours. He eventually heard her and opened his eyes, although...

It was a typical day in Washington DC.   It was a Friday, September 10 th , I had zillion meetings and deadlines.   Had plans in the evening to catch a movie at the Freer Gallery with Priya – a good acquaintance with great potential to become a good friend.  In the morning I call my father to wish him on his wedding anniversary.  He is in India and its late in the night.   He sounds preoccupied and tired, I was rushing for a meeting.  I tell him I will call during the weekend and mentally make a note to call him and my mother, who was visiting her parents. The day goes by at the speed of lighting.  The deadlines still await my attention.  Decide to work during the weekend.  Rush to the movie in anticipation of leaving the day behind.   The French movie was terribly French and did little to appeal to my Indian sensibilities.   Priya and I connect very well, we decide to meet the next day to continue o...