My journey from ‘Thanmathra’ to ‘The Father’ - the story of 'vacant eyes'

This is not a review for any movie but an attempt to trace mine and my family’s journey as care givers, which started with curiosity and fear, but ended in complete disbelief. 

In the year 2005, I happened to watch the Mohanlal masterpiece called ‘Thanmathra’ which introduced me to the world of ‘Dementia’ or ‘Alzheimer’s’.  While we did feel sad about what we saw on screen, as a plain movie buff, we focused on the making, story, performance,  creativity and other elements that maketh a movie a masterpiece! I ended up lauding the movie and watched it few more times.

Fast forward to 2022, when I watched ‘The Father',  an English movie which won Anthony Hopkins an Academy Award, my outlook had changed. To quote from one of the reviews of the movie, ‘The Father takes a bracingly insightful, subtle and nuanced look at encroaching dementia and the toll it takes on those in close proximity to the afflicted’.  

While the movies are not comparable but for the subject and to set the context,  both Thanmathra and The Father dealt with this demon of Dementia. While we enjoyed Thanmathra from a creative point of view and felt sad at what we saw on screen, we could not directly connect with the theme, but by the time I watched ‘The Father’, we were living the movie.  It was pure nostalgia filled with sadness, empathy, helplessness, guilt, frustration, anger and all kinds of negative emotions in the world. It was a living experience and a chronicle of what we went through – me personally, and as a family, when my mother was diagnosed with Dementia and our journey through it.

I am sure there is plenty of literature, stories, characters, reference points to explain what this phenomenon called ‘dementia’ is.  But I somehow felt that I should put down a first-hand account of the journey.   I remember the exact words of the Doctor when he confirmed that my mother has developed symptoms of dementia; his statement still echoes and he said ‘for this disease, the treatment is for the care-giver and not the patient’ as apparently there is no medical cure for this.  Typically, medicines are given to slow down the process which may or may not work.  Looking back, blame it on my arrogance or over confidence, I shrugged off his statement. Eventually, I was proved wrong several times through the journey, situations did break me down and the Doctor’s words turned gospel.  What the whole journey does is to test your ability, belief, confidence, relationships, decision making (while you are still in the know that you can’t make any decisions), social skills, professional front and what not! 

Bit of a flashback…

Ammai - A woman born in a not so well to do family (using this safe word rather than saying ‘poor’ as I would guess that was normal those days), lived her childhood consuming mostly the food freely distributed from the Padmanabhaswamy Temple, Trivandrum, primary school education, helping the family make pappadams and sell it for a living and then marrying my dad probably because he agreed to marry her without any demands.

The one word I would use liberally for describing her is ‘brave’.  She brought us all up (six of us) alone while my dad was away all the time during the better part of our childhood.  He initially served in the Indian Navy and then spent his time in the Middle East in the Merchant Navy to make a living. We are talking about 30 plus years of struggle, brining up the six of us (As I write this, I am still at loss and confused dealing with my one kid).   Of course, people in the family did help her, especially my Chittappa

(Appa's  younger brother), who played an advisory role in our education and general disciplining.  But the hard work of managing the flock was hers.   We all were provided good education and all of us are doing fairly well for ourselves now.   She ensured that we all went to the best schools available at the time and were given enough freedom to do what we all wanted.  While she was a tyrant when it came to school affairs, we were all given the option to pursue sports / music and freedom to do whatever we wanted apart from education. Personally, I was given an exposure to Kalari (the oldest martial art in the world), learning mridangam (though a given in a Tam-brahm family) , part of the air wing in school (this takes lot of time away from studies) and was allowed to attend wha RSS shakhas those days (where was exposed to yoga as well – a buzzword now). Alas,  I didn’t pursue any of these in the long term. This might sound trivial, but the fact that someone naturally did all these (being now preached and promoted by all modern-day education counsellors as some kind of ‘out of the box’ thinking) decades ago, in itself is commendable. 

Those were growing up years, but the struggle didn’t end there.  While she outlived my dad who passed away in early 90s, she had to endure the loss of her favourite son in his early 30s to an accident, with whom she was living all along. Looking back, this probably happened when she was in her comfort zone or to say in a colloquial way – ‘life was set’ types.   Living in Kerala, familiar terrain, with her son and daughter-in-law in a ‘nothing can go wrong’ situation, that I presume would have been the ultimate jolt.

The journey continued.. she spent her rest of her life with all the children, living in Delhi, Chennai and Bangalore and finally settling to live with me in Bangalore (while visiting other children and grandkids visiting us regularly). She managed to make every place her own by making her own network of friends and acquaintances. Even at the age of 75, she could move around on her own in long distance trains without any apprehension or fear.

The demon called ‘dementia’ creeps in…

Needles to state - this is the hardest part of the whole journey.   The puzzle of ‘when, how and why’.  As a care-giver, trust me, your whole life is spent on figuring out these three things and even now we contemplate whether we could have done something different.  Of course, there is no answer to this but just imaginations, presumptions and assumptions, mostly to satisfy ourselves.

Looking back, in my college days, one of my friend’s paati (grandmother) had this.  I used to spend lot of time in his house and his paati (who was then in 80s) hallucinated a lot.  One of the episodes I vividly remember is she would suddenly come and say there is fire in the room and would ask us to douse the fire.  Those days, we used to laugh It off and branded her as ‘vattu’ in Malayalam (or something wrong mentally).  We never figured this is a health condition which needs attention or compassion. The image of the old lady was a constant thing which haunted me through this journey and Ammai  used to behave the same way at later stages.

In our case, it probably started off as some kind of confusion.  We live in a gated community and she was regular with her evening walks. One of those days, a friend of mine called me and told me that my mom is asking for directions to our house from a security.  Very innocuous as we all at some point in life tend to forget a few things.  It can be a name, place or incident.   But that probably is the first time I thought there could be  a problem. We observed her for few days and it emerged clearly that something was amiss.  Few episodes which still strike me are – she would keep asking for food (forgetting she already had), confusion with place of stay (she spent a lot of time in Chennai with my sister and when in Bangalore, she would say she is in Chennai and vice versa), confusion with time (getting up after the afternoon nap and asking for breakfast) etc. 

We approached a Neurologist and our worst fears were confirmed.  There was a neuropsychology analysis conducted where they check the stage of deterioration.  Those days she was an avid Malayalam newspaper reader and would get restless if she didn’t get her newspaper in the morning on time.  Probably as most old people do, she would directly go for the ‘obituary’ section to check for any known names.  But what hit me during the test was she could not figure out the current year and to a question who was the prime minister, she answered Indira Gandhi.   Our journey with the demon officially started that moment, sometime in 2017. 

Probably the worst development from her own perspective was when she realised something is wrong with her and started getting worked up over that. 

Reasons (pure pondering without logic)..

This is something which is pure guess work or there is no medical way to find out the right reason for this demon.   In the process of pondering what we could have done differently, two things do come to my  mind.  

Moving from a comfortable location to a new location. Sometime in 2016 we moved to a gated community from a small apartment complex.  In the old complex, her routine was set – lots of friends to sit with in the evenings in a nearby park and an Ayyappa temple nearby.  She used to look forward to her evening sojourn (akin to small kids waiting for the evening to go and play with their friends) and the whole thing got disturbed when we moved to this gated community.  While the safety part was taken care of, the networking bit was lost.   Given her nature, she did make lot of friends in the new place also but somewhere lost her zeal in the process.

Few physical ailments resulting in her inability to do household chores.  For people in that generation, from the time they could do something independently (from a very young age) this household chore became the only constant thing.  Like people of that generation, she was passionate and took great pleasure to do all these. She was legendary for her hospitality and this stopped due to a couple of falls she had and maybe the idleness or dependence could have caused some issues. We also, for safety purposes, curtailed her kitchen expedition as she used to forget to switch off gas or hurt herself if something went wrong in the kitchen. 

While the above can be far away from truth or cause, to repeat, trust me this is the first thing a care giver will engage in when this demon hits someone close.   They will keep thinking about what could have caused this and needless to say, there is no answer to this question.  All the science in the world is yet to come up with a solution to this conondrum.   Some say being inactive or loneliness can cause but I have seen this affecting very active persons also. One of the doctors I met initially told me to increase coconut oil intake and use turmeric as it can increase memory.  Ironically, hailing from Kerala, I have not seen any other oil being used at our house for cooking and turmeric can be found in each dish in large quantities.  While scientifically the suggestion could be true, in our case, that was definitely not the cause.  

Physically she was in good condition till last few days, she had mild BP and no diabetes, which is commendable given the lifestyle diseases prevalent nowadays, even in youngsters.  So, we are still clueless and keep thinking about it. 

Her mental condition continued to deteriorate; it became difficult for her to identify even close relatives.  Many weird things would happen.  To cite a few;

·    She would get up in the middle of the night and say ‘station has come and we have to get down’ thinking she is in a train,   

·    She used to go to the nearly pharmacy and gobble up pain killers thinking she has some headache and it will get cured, 

·    While we have all kind of fruits and snacks at home, she would go to the supermarket and buy one banana or few biscuits and eat (probably to satisfy herself that she is still in control of things), 

·    She wanted to know whom she married and where he was -to the extent that she used to wait for him at the door. Once I showed her marriage picture and she flatly refused to acknowledge that it was her.

·   She used to keep mentioning that her kids are young and gone to school and she has to keep snacks ready when they come back. 

·    She once mentioned that I am not living with the woman I married and was living with someone else.  

·    She constantly wanted to go back to Kerala to live with his son who passed away in late 90s.

·    She used to keep her sarees in a bag saying that she is a guest and has to return to Kerala soon (till we started hiding all the bags)

·   Her only prayer to her favourite Padmanabhaswamy was to take her life soon.  Alas, gods probably had other plans.

The list is too long and many instances are very hard to even recollect, but just the thought of narrating to demonstrate how bad things can go.

The last days…

The end (physical end as I would like to call it) did finally happen in February 2023.  To our respite, we had engaged a full time, live-in care taker to spend time with her and we remain grateful for the commendable job she did in looking after Ammai during her last days.  She took care of her impeccably and brought some discipline in her life to the extent that they used to go for evening walks till the end (but for the last 2 weeks).  She also efficiently managed when they both got COVID. In Ammai’s case, COVID was mild and didn’t impact her as much which probably demonstrates the physical resilience or strength she had.

Her health did deteriorate in the last 2 weeks and we were interacting with doctors and doing some tests etc.  But finally, she had a cardiac arrest and passed away at home in her own bed. It’s the first anniversary month now and this attempt is to summarise our tryst with Dementia

In one of the interviews, renowned actor Anupam Kher had mentioned that his worst fear is to ‘lose memory’. Losing your own memory and not knowing who they are.  He also used a term to explain the condition of a dementia affected person, that is they have ‘vacant eyes’.  There is no better way to word the situation and I totally resonate with this.  

Unfortunately, statistics are stacked against humanity in this respect.  As per the World Health Organisation, there are over 10 million new cases of dementia each year worldwide, implying one new case every 3.2 seconds. There are over 55 million people worldwide living with dementia in 2020. This number will almost double every 20 years, reaching 78 million in 2030 and 139 million in 2050.)  https://www.who.int/news-room/fact-sheets/detail/dementia)

While the situation is bleak globally, the culture of family bonding in India makes it more difficult for us to handle.  Typically, in the western world, while it’s not a criticism, they start living separately and have their own life and space since a very young age.  In India, parents live with us and it is very difficult for us to consume what happens to them in front of our eyes.  

We are looking at a colossal crisis (underway) if no cure is found.  Without trying to sound preachy as I am no medical expert, first signs are critical and cannot be taken lightly as I understand in initial stages some counselling, memory exercises etc. can delay the deterioration. So, watch for it. 

Though I have come across this many times, even in very close families, what you experience first hand cannot be explained. The reason for choosing a filmy title and connection is also to establish a differentiated mindset,  the mind set when you watched ‘Thanmathra’ years ago (incidentally I watched this with Ammai and she loved the movie) and the mind set when you watched ‘The Father’.  

I am sure as care-givers we struggled, cried, cribbed, felt helpless, cursed, shouted, fought, argued, got upset and what not... but just the thought of what they go through is inconceivable.  

I will conclude with something I read online,“Remember, the dementia patient is not giving you a hard time. The dementia patient is having a hard time and we being there is incidental”.