Amma’s Journey Towards

Oblivion
A narrative from a caregiver about life around an
Alzheimer’s / Dementia patient

SURYAN IYER

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Copyright @ 2020 by Suryan Iyer

All rights reserved. No part of this book may be

reproduced or used in any manner without the written
permission of the copyright owner except for the use of
quotations in a book review.

First published: 30th September 2020

Contact details of the Author

E-mail: suryanpk@gmail.com

Whatsapp number : + 91 9442919272

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This book is dedicated to my wife, whose support and
sacrifice made it possible for me to take care of our
mother during the most difficult period in our life when
she was suffering from Alzheimer’s disease.

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Disclaimer: The contents of this book are my own
views and thoughts based on my personal experience,
which may not be entirely accurate from a medical
perspective. Hence, it may be read only as such.

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 Alzheimer’s / Dementia

Alzheimer’s / Dementia is caused by certain physical /

neurological issues resulting in the degeneration of
brain cells. Symptoms of the disease include memory
loss, behavioural / personality changes, delusions &
hallucinations, depression, disorientation etc. Patients
may gradually forget about friends and relatives and
become oblivious to everything around them. They may
need support for their daily routine and may not be able
to take care of even their basic needs.

Different types of Dementia demonstrate varying

symptoms relating to memory loss and resultant issues.
Alzheimer’s is a prominent type of Dementia.

At present, there is no effective cure available for

Alzheimer’s / Dementia. The caregiving by close people
can be the only possible support available for the
patients and it can make a lot of difference in
maintaining the quality of life for the patients.

Caretakers undergo lots of mental stress and emotional

drain while taking care of patients for long periods. It
can have a serious impact on the health of the caregiver

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as they are closely associated with the progress of the
disease which affects their beloved person’s lifestyle
and personality. It is common for caregivers to develop
depression and exhaustion at some stage during the
progression of the disease.

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 Prologue

Amma passed away on 30th September 2016..........

She had undergone more than a decade of suffering

because of Alzheimer’s disease, a health problem that
not only affects the patient, but also the entire family.

I wish to record various events and experiences, which I

feel would help in a better understanding of the
problems associated with Dementia / Alzheimer’s. I am
sure it will make the reader think twice about the
mysteries of the human brain and its functioning. It
may also make one wonder about the uncertainties that
many of us have to pass through the journey called life.

More than a decade of my prime life was totally

revolving around my beloved mother, which was a very
stressful period in my life. Amma was a very
affectionate person and she was very efficient and a
multi-faceted personality. She was very helpful to
everyone around her and was respected by relatives and
neighbours. She used to manage the household affairs

7
in a very capable manner, including the upbringing of
her children. She could also be a tough taskmaster if the
situation so warranted.

During a certain period, when we, the close family

members, started feeling some strange, shocking and
unexpected changes in her behaviour and personality,
we could not digest it... we were wondering...what went
wrong? Was it some shortfall on our part that could
have changed her attitude and approach so drastically?
Was it due to some failures on my part in taking care of
her? Despite all that she had done for the family in her
younger days, did we fail in our duty when she needed
it most?

We had to wonder, worry, and suffer for a long period

before we had the answer...... Alzheimer’s is not only a
problem of memory loss, it can also change a person so
much as the disease progresses, that at some stage one
starts to wonder whether it was the same person whom
you knew so well in the past. Well, by the time we
recognised the fact that Alzheimer’s was the culprit, we
had suffered a lot.

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I have seen some literature wherein people close to
Alzheimer’s patients have narrated their experiences.
Alzheimer’s is often described as a very cruel disease
which causes mental agony and suffering to the
caregivers, perhaps more than what the patient suffers.

I hope this first-hand experience might help caregivers

in understanding the disease better. It might also help
them understand that the behavioural changes such as
anger, frustration and negative attitude (or such other
changes; each patient may have their own unique
problems) exhibited by the patient in the early stages of
the disease are definitely NOT intentional. This
understanding could help in providing better personal
care to such patients and ultimately this could be the
only help possible. To the best of my knowledge, until
now, no effective medicine is available to cure an
Alzheimer’s / Dementia patient though some medicines
are available to provide relief from the symptoms of the
disease.

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 Backdrop

There are many theories why a person might develop

health conditions like Alzheimer’s. Essentially, certain
physical / neurological issues can lead to the
degeneration of brain cells, which is the root cause of
Alzheimer’s / Dementia. Apart from this, other reasons
like mental stress and loneliness, as well as hereditary
problems could aggravate the progression of this
disease. If that is true, Amma had suffered from all
these problems. Her early years were full of family
related tensions and the resulting mental stress could be
the foremost reason.

I might have unknowingly contributed towards the

second reason, loneliness, when I left India for a few
years as better career and financial prospects lured me
to take up an assignment in the land of petro-dollars,
Saudi Arabia. There was a period of about six years
when she had to manage her life almost by herself.

I guess hereditary issues also cannot be ruled out as

Amma’s mother had also suffered from dementia

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during her final days, though it was only for a short
term and not very severe as it was in my mother’s case.

Before I start in detail about her illness, I think it

would be appropriate to provide some details of my
family to clearly understand the background that might
have contributed to her mental stress and related
problems.

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 Early days

Amma had two brothers, one elder and another younger

to her. Being the only daughter with two brothers, her
childhood was pleasant and pampered, though she was
hailing from a family with limited financial means. She
got married to my father at the age of 19 and moved to
Panamanna, our native village in Kerala.

Those days when my mother got married (and the next

few generations for that matter), the custom of our
society made it mandatory for the woman to make a
sudden and permanent shift to her husband’s family and
quickly adapt to the new environment. From the first
day of her married life, she is expected to be part of the
new family and live up to the expectations of the senior
members there. My mother also had to undergo the
adaptation process, which would have been a sudden
jolt from her earlier days of comfort, especially since
my father was part of a big joint family.

My paternal grandparents were from a well to do family

owning quite a lot of agricultural land and other
properties. However, by the time my parents got
married, most of the land and properties were sold off
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for various reasons. My father had only primary level of
education and agricultural activities were the only
source of income for him.

My parents had three daughters in succession, despite

their prayers for a son, as in those days having a male
child was considered most important. I guess their
prayers were answered when I was born and two years
later, they had one more son to complete the family.

Our childhood days were a mixed bag of happy

moments combined with life’s difficulties. Maintaining
a big joint family was a tough task considering the fact
that no one was having a regular source of income,
except my father’s eldest brother. Naturally, financial
difficulties had given my parents lots of mental stress.

After the demise of our grandparents, my parents

shifted to a separate house soon after my younger
brother was born. Our new home was too small for a
family of seven, and we grew up in this place with
limited facilities.

My father used to be in charge of the village ration shop

for several years which didn’t really support the

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financial needs of the family. On the contrary, it could
have worsened the stress levels of my mother as she
had to support my father in the day-to-day running of
the shop along with her household responsibilities.

Adding to the agonies, our younger brother developed

certain health issues when he was around 9 -10 years of
age. He became physically challenged and gradually
lost his ability to walk or move around despite medical
treatments. (He was suffering from ‘Duchenne
Muscular Dystrophy’ (DMD), a disease which had no
cure). One can easily understand the difficulties that a
family has to face when one of their members is
incapacitated.

Despite the financial difficulties, all my sisters were

married off when they were around 17 – 19 years of age
(with the solid support of some close relatives).

We gradually became a four member family after my

last sister also got married in the year 1976. However,
since my second sister’s husband was from a nearby
family, they used to visit us frequently. Her elder
daughter chose to go to school from our home and she
lived with us for several years. In addition, we had a
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few children from the neighbourhood, who used to
spend most of their time with us. My brother, who
could not move around, enjoyed the company of the
little ones especially.

All in all, our home was never sleepy as we used to

have lots of people around. Though financial
difficulties were giving a very hard time to my parents,
such problems never interfered in taking good care of
all these extended family members. Amma always
enjoyed serving food to whoever was there during a
mealtime; without differentiating whether it was a
family member or an outsider. She also used to help
needy people with what could be spared within her
limited means.

Amma was always engaged in managing the household

affairs and had very little time for pursuing her own
interests. The only exception might be the religious and
spiritual activities in which she used to find some
solace. She seldom used to step out of the house except
for occasional visits to our village temple, that too in a
hurried manner in between her household activities. Her
days were completely devoted to the family; always

15
caring for her children with practically no room for
herself. Her life was bonded to a few familiar people
and limited to the four walls of her home during the
earlier days.

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 A birth and two deaths

In spite of our financial problems, my parents made it a

priority to send me to college with the staunch support
of my uncles (My father’s eldest brother as well as my
maternal uncles were very supportive during those
difficult days). Soon after my graduation in 1982, I got
a job in a Bank and with that the days of financial
problems were almost forgotten. For the next few
years, we all had a comfortable time, though my
brother’s health condition was always an issue.
However, he always put on a bright face and was
positively inclined to everything around him despite his
physical disabilities. Children around him made him
feel happy and engaged; and in return, the children
were also happy to be with him.

Then came three successive events - my marriage, a

promotion and a transfer during May 1993. After my
promotion and resultant transfer, I had to stay away
from my parents and brother. Though my parents were
eagerly looking forward to my marriage and were
excited with the news of my promotion, the third event
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that followed the two happy events was not anticipated.
Understandably, my absence made it quite difficult for
all three of them. However, they got a chance to
celebrate soon after.

Our son was born in August 1994 and my wife was

with my parents for a few months during that period.
My parents, and especially my brother, had some of
their memorable days in the company of my wife and
the newborn baby during those precious months.

However, these happy days were short lived as a tragic

event was to take place soon. My brother suddenly
developed some respiratory problems and was
hospitalized. His health condition worsened very
quickly and he passed away within a couple of days.
(Patients suffering from DMD have a short life
expectancy, they don’t go beyond their twenties
normally; however, I didn’t know about this fact at that
time). His demise created a big vacuum in the family,
especially for my parents whose life totally revolved
around him. However, when we viewed it from a
different angle, we were able to accept it as God’s

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decision - my brother had suffered enough; he was now
released from the burden of earthly sufferings.

We had to face another tragic event soon after. My

father was a healthy person and used to do lots of
physical work in our backyard (we were left with some
farmland though most of the ancestral properties were
sold out long back). He was fond of farming and we
used to have a variety of vegetables in our compound.
He never sat idle and continued to be very active even
in his seventies.

Towards the end of 1997, he developed some health

problems and had to be hospitalized two - three times.
Soon after this, his health deteriorated quickly, though
he was still managing his personal needs by himself. I
was working in Bangalore during this period and my
wife and son were with me. I used to visit my parents
frequently, especially when my father was not keeping
well.

My father passed away in July 1998 following a very

brief period of aggravated health problems.

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Within a short span of four years, we had lost two
members of the family and suddenly my mother was
almost alone in the house. The children, who used to be
with us during their younger days, had already moved
on when they grew older and got busy with their own
lives.

Though Amma used to come and stay with us in

Bangalore frequently, such visits were only for short
periods as she always wished to be back at our village
home which had its emotional bonds for her. Of course
my second sister and her family were always nearby to
support her.

Then came a major turning point in my career, which

also might have affected Amma negatively. Several
unexpected events compelled me to leave my bank job
and take up a new assignment in the Middle East.

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 A Gulf job

When I had joined the bank soon after my graduation, I

thought that I would continue with the same job till my
retirement. However, it was not to be. Soon after my
promotion, I got a chance to move onto a specialized
functional area related to Information Systems Audit. It
was the early days of computerization in the banking
industry and new job areas were evolving.

The bank salary was becoming insufficient to meet our

growing financial needs and I started to explore better
opportunities. It was a tough decision to quit the stable
job which was still very precious. But an unexpected
transfer from Bangalore to a far off place compelled me
to take the decision to quit the Bank. I got a very good
job offer in Riyadh, Saudi Arabia and I moved out of
India towards the end of 1999. My wife and son also
joined me in Riyadh soon after.

It was another phase of my life, and it was also a major

setback for my mother. Although she was happy that
her son was going to have a much better position
career-wise, she became more secluded and the

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loneliness could have affected her in many ways which
I had not anticipated.

This was the backdrop which I believe had a big impact

on her in the years to come.

(Various factors such as financial stress, family

problems and my brother’s health condition had made
her life very stressful during the early years. Added to
these, the loneliness following the death of my brother
and father as well as my departure to a foreign country
might have had an impact on the aggressive manner in
which Alzheimer’s disease developed in her case. The
disease resulted in drastic changes in her character
from the kind, benevolent, resilient and efficient person
that she was in her younger days to someone whom
even we, the close relatives, found it difficult to
recognize or accept until we finally realized that it was
the disease which was causing all these problems.)

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 Annual Visits

A job in the Gulf meant that we could visit Amma only

once in a year. Naturally, the time Amma got to spend
with us was suddenly limited to 3 to 5 weeks in a year. I
can now imagine the agony of waiting for eleven long
months to be with your son for a short period. So, while
our annual visits were celebration time, the rest of the
year was always periods of waiting and yearning for
her. Though my 2nd sister and family were always
nearby, she was finding herself lonelier.

Of course, there were certain positive aspects also

resulting from my Gulf job. After many years of
financial problems, Amma could now afford to spend
money without any restraints. During her earlier years,
she never had a chance to travel to places that she
wished to visit (mostly temples). Now she could afford
to satisfy such unfulfilled desires. Even during our
young days when we had lots of hardships, she was
keen on helping the needy people; now she could freely
indulge in such charitable activities as she desired. This
also gave her an elevated status in our neighbourhood;
she became the source of support to our neighbours. In

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short, in her small circle of influence, she was having a
sense of purpose, combined with power and authority.

We managed to pass through about six years of our life

in Riyadh, the Capital of Saudi Arabia. Though there
are differing views about the restrictions in this country,
our experience was that of a generally peaceful life. My
job was financially rewarding and the workplace was
very comfortable, with lots of respect and appreciation.
We had a good group of friends around, both in the
office and outside, and we managed to have a
comfortable life.

Meanwhile, during every subsequent year when we

came on our annual visits, we could feel that Amma
was not comfortable and the loneliness was affecting
her badly.

This matter became a frequently discussed topic

between me and my wife. Finally, after the sixth year of
our life abroad, we decided that my wife and son shall
return to India. The main purpose was to provide
company to my mother and we also felt that it would be
better for our son to continue his education in India. He
was entering the sixth standard at that time and sooner
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or later, he had to return to India for his college studies
because expatriates’ children are allowed to study in the
Gulf schools only up to the high school stage.

We had to choose a place to settle down as our village

had only very limited facilities, especially for my son’s
education. We searched different places around and
finally decided that Coimbatore would be a suitable
place. Some of my cousins had already settled down
there and we felt that it would be safer and comfortable
for my family to be there, near our relatives.

So, after six years of Gulf life, my wife and son

returned to India and my mother also joined them in
Coimbatore. We managed to get our son admitted in a
good school and rented a house at a place very close to
my cousins.

A very different lifestyle was emerging for all of us. I

was planning to manage alone at Riyadh, at least for the
intermediate future. Amma had agreed to shift
residence to Coimbatore so that she won’t be lonely
anymore. For my wife and son, it was a major change
in their life. In short, all of us were going to experience
a sudden change in our daily routine and way of life.
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 Onset of Tensions

Trouble was just waiting to happen in the new place.

Soon after settling down in the new place, we could
notice lots of changes in Amma’s behaviour in the form
of frequent mood swings and notable changes in her
attitude. Amma would be very upset suddenly for no
specific reason and such situations became more
regular and frequent as the days passed by. She would
also be very anxious about matters which were really
not important.

I used to think about the reasons which might have

caused such drastic changes in her normally pleasing
nature. We initially assumed that such changes were
mainly caused due to the frustrations of shifting to the
new place. Amma was not at all comfortable in the new
place and that too where she was not in control of the
household matters. Hitherto, she was managing her own
place and was the authority in all matters. However, at
Coimbatore, it was a new place and being in a city, my
wife had to take charge of managing the household
requirements, shopping, and such other daily chores.
Naturally, she also had to go out frequently for various

26
purposes. With all these, Amma found herself in a
situation where she had nothing much to do. Moreover,
all along she was used to the village life (where she had
her own social circle of influence) and it was difficult
for her to adapt to the urban culture. In our native place,
she used to have a number of people to interact with
and socialise. Here, no such facility was available and
this was one aspect I had totally omitted to consider
when we decided to settle down at Coimbatore.

During this period, we had purchased a house plot and

started constructing a new house. The financial aspects
of house construction and daily oversight of the work
were being managed by my wife. I thought maybe this
aspect also could have made my mother feel that she
was being sidelined.

Initially I was under the impression that all the above

reasons were making her behave so differently.
However, we could realize only much later that she was
already in the initial stages of a serious health problem
that was finally going to result in Alzheimer’s and the
changes in her character were caused by this disease.

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I shall now try to narrate some specific instances of
behavioural changes so as to make the readers
understand a very important fact about Alzheimer’s /
Dementia. If you find some strange and unexpected
behavioural changes in someone close to you, or if their
attitude and approach towards you or other family
members is changing for no reason, such symptoms
could be an indication of the onset of some health
problems. Such changes may not be intentional and
would need a very sympathetic and careful handling
though it would require lot of patience and conviction.

Another important point is that there are no set patterns

about what causes Alzheimer’s disease and how each
patient may develop the symptoms. It could be unique
for each patient and the onset of symptoms and its
development could differ from case to case. Still, there
are some common signs that are clearly indicative,
which could be better understood from our experience.

(At the same time, it is important to understand that

symptoms like memory problems, mood swings or
depression towards old age need NOT ALWAYS be
indicators of Dementia / Alzheimer’s).

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 Mood swings and delusions

Mood swings mean the unexpected change of behaviour that

occurs for short periods. The patient may behave normally
during other times.

Delusions are false beliefs about situations / persons /

events. A dementia patient may not be willing to accept
the real facts and may stick on to their belief. The
patient could feel the presence of someone in his / her
room though he / she may actually be alone. Such a
patient may also accuse people around him/her for
imaginary mistakes or wrong-doings.

When someone very close to you shows signs of

behavioural changes and depression followed by a
major health problem like dementia, such experiences
can be quite difficult to digest.

Based on my experience, mood swings and signs of

depression were the early indicators in Amma’s case.
Such occurrences could easily be misunderstood by
others as the patient would still behave normally except
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when they are having such problems. As such, it is very
difficult for people to digest or understand the sudden
changes in their behaviour. This could often lead to
serious family problems and the people around the
patient could be seriously impacted by these situations.

We had experienced several instances of mood swings

and delusion in Amma’s case.

These were happening mostly during the early stages of

the disease. We could notice that occasionally, she got
into arguments with people who were actually very
close to her in the past. It was very difficult for such
persons to understand the sudden change in her nature.

Once, when Amma was alone at our village home, my

brother-in-law had come to visit her. Normally, Amma
would be so pleased with his visits and would treat him
in the most caring manner. However, during this visit,
she was in a very different mood. She announced that
she was going to our village temple and as the temple
festival was going on, she would have her lunch at the
temple itself. When he enquired about his lunch, Amma
suddenly flared up: “I don’t know what you would do. I
am not going to cook anything in this house today”.
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This was a big shock to him as Amma was normally
very kind and hospitable even towards strangers.

He tried to take it easy and replied in a jovial mood: “In

that case, I may have to cook the food myself”.

Even then, Amma was adamant and told him that it was
not her concern. He was totally taken aback by now,
and after Amma had gone to the temple, he did the
cooking by himself. When Amma returned from the
temple (after having lunch there), he was about to have
his lunch. Even then, Amma didn’t enquire anything
about his lunch or made any amends to serve him food.
At that time, he had no clue about this strange
behaviour and could not realize that this actually could
be the symptom of an imminent health problem.

On another occasion, Amma quarrelled with a very

close neighbour in our village, who was very close to
her in the past. She accused her that her small kid, who
had come with her to visit Amma, had urinated inside
the house. Actually nothing like that had happened and
she tried to convince Amma about the fact. Amma got
very upset with her and the girl had to leave the house
feeling very hurt.
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Another instance was when Amma became very upset
with my wife when she was in Coimbatore. She thought
that my wife had kept the TV remote hidden
somewhere. She felt that it was done intentionally so as
to not allow Amma to watch the TV. She became very
angry and upset with my wife. My wife tried to explain
that she had not done anything like that. But all that
didn’t change her mood and after some time, she just
got out of the house and walked to my cousin’s home
which was quite close by. She was weeping all the way
and my cousins there tried to pacify her. After some
time she regained her composure and they brought her
back home. When I heard about this incident from my
wife, it was very difficult for me to believe her. I could
not imagine that Amma would behave in such away. I
just could not accept (whatever may be the reason) that
Amma would go out of the house weeping on the roads.
If she was her usual self, such a situation was
impossible.

Along with the behavioural changes, she also started

having confusion or forgetfulness in her day to day
activities. A common problem those days was when she
would forget about the gas stove in the kitchen. The

32
cooking may be progressing when she may move out
for something and then she may not remember about
the kitchen for a long time. Luckily, nothing serious
had happened on such occasions except for the spoiled
food or the blackened vessel.

While at Coimbatore, she used to go for short walks

around our home, where we had only few houses at that
time. She once lost her direction and could not get back
on her own though she was just going around a small
rectangular road which covered few neighbouring
houses in our colony. A neighbour found her in a
confused state and brought her back home though it
was actually just around the corner. After this
experience, we always watched her movements to avoid
the recurrence of such a situation.

These look like trivial incidents which can happen in

any household. However, while it is possible that such
incidents are simple issues of misunderstanding, they
could also be the early symptoms of a more serious
problem.

Similar instances kept recurring in the coming months

and years. Each passing day was becoming more
33
difficult and we were missing the peaceful environment
in our family life. I can narrate more examples, but the
essence of all such events is similar and hence I would
avoid unnecessary details.

34
 Uncertain days at Riyadh

Meanwhile, I was alone at Riyadh and the

developments in Coimbatore were making my life
miserable. Amma was not comfortable; my wife had no
clue about what was happening around her, and I was
helpless being in a far-away place.

Within a year of my family settling down at

Coimbatore (though it was not a peaceful way of
settling down), my life was totally unsettled in Riyadh.
Each phone call from home would bring more bad news
about the growing tension there. It was quite a difficult
situation and I was growing more and more restless. I
started visiting my family frequently. The annual visits
were things of the past. I was travelling almost once in
a quarter these days. Of course, I could avail some
special privileges from my employer during this period.
I was now in the senior management and had the
opportunity to visit my family more frequently as part
of some official trips, which came as a blessing in
disguise.

35
Even with very good facilities provided by my
employer, I was finding it difficult to continue working
in Riyadh because of the family issues. I started
thinking about returning to India and as days
progressed, I began finalizing my exit plans from Saudi
Arabia. Finally, in March 2007, I tended my resignation
as I decided to wind up and return permanently to India.

However, a major salary revision was announced by the

Management exactly during this time, which would
result in a substantial salary increase for me, if I were to
continue in my job. Our CEO, who was very close to
me (he was my direct boss) realized that my resignation
at that time would result in a huge loss for me. He
compelled me to continue with the Company for some
more time so that I could enjoy the benefits of the
salary revision.

He allowed me to avail unpaid leave as and when

needed to take care of my family requirements and
continue to work for the company when I was free.
How could I reject this kindness? I decided to continue
with the company for the time being with the following
time schedule. I would spend one month with my

36
family and then work for two or three months in
Riyadh.

This arrangement continued for about 18 months and by

that time, the situation was getting worse at home. Then
came an abrupt decision that marked the beginning of
yet another phase of my life.

37
 A surprise trip and a sudden decision

Normally, I am not a man who likes the idea of giving

surprises to anyone. However, I had a funny idea to
make a surprise visit to Coimbatore, to reach home on
the New Year day of 2009. That trip is unforgettable;
my flight was via Sharjah and it was delayed due to bad
weather. By the time I reached Coimbatore after a
number of diversions and delays, the new-year day was
over and I could reach home only by the 2nd morning.

I had planned a leave of just 15 days this time and was

due to return to Riyadh on the 16th. But the situation at
home had worsened so much that my wife told me in
unconditional terms that she was finding it impossible
to manage by herself. She was becoming very tensed
and showed signs of losing her composure. On the other
hand, Amma was getting into a very depressed state of
mind day by day.

At this point, I made the final decision not to go back to

Riyadh and conveyed my decision to my boss. He was
magnanimous once again and accepted my decision
without any question. And thus came the sudden end to
my Riyadh days.
38
 Shuttle service

Meanwhile, the house work was completed and we

shifted to the new place soon after my final return to
Coimbatore. As the days passed by gradually, we were
getting strong indicators that Amma might be suffering
from some psychological problems. By now, I was
convinced that it was not just the change of
environment or such other matters that could be causing
all these behavioural changes in her.

It was during this period that we started frequent trips

between Coimbatore and Panamanna, our native village
in Kerala. Amma’s mood swings had become regular
events these days and when she was very upset, she
would insist on going back to the village. So I would
take her there and spend few days there. However, after
2-3 weeks, in her normal mood, she would begin to
miss my son and wife and we would come back to
Coimbatore. In the next few weeks, the situation would
change again and this cycle continued during the next
2-3 years.

(She used to be relaxed and comfortable while she was

in our native village during the early days when she
39
could identify and remember places and people. At a
later stage when memory problems aggravated, such
change of place was not very helpful as she could not
connect anymore with places or people).

Gradually, my world was shrinking from quite a wide

horizon into the boundaries of our home. While I was
working, I used to travel regularly between Riyadh and
Coimbatore, apart from official trips to different places.
In short, I was leading quite a hectic work life until I
resigned my Riyadh job. But now, my journeys were
limited to the shuttle trips between Coimbatore and
Panamanna. I was getting used to a very different life
style.

As the days passed by, though I was with Amma all the
time, it didn’t help much to keep her happy as she was
entering the advanced stages of Alzheimer’s. My
presence did help her in being calmer and more
comfortable during the early days after my return.
However, day by day, she was showing stronger
symptoms of the disease.

I was hesitant about taking her to a doctor even at that

stage. I was worried that if I suggested medical
40
treatment, it could make her react in a negative
manner. I had once suggested to her that we may
consult a doctor; to which she had responded
something like: “Oh, now you wish to make me a
mental patient”. This may be another problem
associated with such patients. I guess they tend to
believe that others are responsible for the arguments
and strained relationships.

41
 Hallucinations

Hallucinations can be explained as incorrect

perceptions relating to events or people. Experiences of
hallucinations appear to be real for the patient as if an
event has taken place in front of him / her. Actually, the
experience of hallucinations is about events that have
never happened; but they are all real in the mind of the
person experiencing it.

We started to observe the symptoms of delusions and

mood swings since the time we settled down at
Coimbatore. However, she actually had mild symptoms
continuing from the time when she was alone at our
village. This stage continued for few more years after
my return from Riyadh. I can say this stage of early
signals could have been going on for about 8-9 years
before we could positively confirm that she was
suffering from a serious health problem. This was the
toughest time for all of us as we were victims of a
serious problem without knowing what it was. We had

42
almost forgotten the peaceful environment in our family
during this period. To my understanding, this stage
could be classified as early stages of Alzheimer’s.
According to doctors, medical help during these stages
can provide some relief. However, it is an accepted fact
that no medical treatment can stop the progress of
Alzheimer’s / Dementia, though some medicines can
help to provide relief for some of the symptoms such as
depression, lack of sleep, anxiety etc.

Continuing from the stage of mood swings and

delusions, Amma started having experiences of
hallucinations at an advanced stage of the disease.
These experiences were distinct and clearly
demonstrated that something was seriously wrong.
During this stage, other problems like physical
weakness, lack of coordination of body limbs,
disorientation, memory loss etc. also developed at a
faster pace.

I shall narrate three distinct experiences of

hallucinations to better understand what such
experiences could be like.

.
43
 Scare at Bangalore

As the days progressed, the situation was gradually and

definitely getting worse. My sisters knew that we were
passing through a very difficult time taking care of
Amma during those days. They used visit us in turns
and stay with Amma for few days / weeks so that I can
have some time to refresh. On most of such occasions,
Amma would be taken to Panamanna so that my sisters
could take care of her in the soothing environment of
our native place.

During one such visit in March 2014, my second sister,

who is settled in Bangalore, suggested that she would
take Amma along with her to Bangalore, expecting that
a change of place would be refreshing.

However, Amma had a very strange experience within

a couple of days after reaching Bangalore.

She was in my sister’s apartment in Bangalore which

was on the fourth floor. It was in the morning when she
was watching something from the apartment window.

44
Suddenly, she was very upset and started behaving in a
very strange manner. Her words and behaviour implied
that she had gone into an imaginary world where she
was probably at the village home of her parents. It
seems her mind had travelled into her childhood days.
What she had seen there was something terrifying for
her. Her house was being vandalized / ransacked by
some strangers and her parents were helpless in
protecting their property. She started shouting and
yelling for help, requesting someone to call her brother
to save the situation. (Her brother was always a source
of support to her during all her difficult days).

My sister and her husband tried to pacify my mother

and bring her back to the world of reality. This only
made things worse. (At that moment, it seems she felt
that these two were strangers who were part of the
ransackers’ team!).

When nobody seemed to help her, she wanted to go out

and do something on her own. My brother-in-law, with
his practical wisdom, didn’t want Amma to get out of
the apartment door as it would create a real nasty scene
in front of neighbours as they might not understand

45
what was going on. He locked the door and didn’t allow
Amma to go out. Amma was furious and she became
even more upset that these ‘strangers’ were holding her
locked up. She could not realize that it was her daughter
and son-in-law who were near her at that time.

My sister’s daughter was staying at an apartment two

blocks away. My sister phoned her to do something to
pacify Amma because they could not do anything to
console her. My niece rushed to my sister’s place and
when Amma saw her, she started repeating her problem
related to the property being ransacked by strangers.
This niece was her pet as she had grown up with Amma
during her infant years. By now, Amma had regained
her senses to some extent and she could recognize her
granddaughter. However, the ransacking of the
property and the two strangers locking her up were still
genuine problems in her mind.

My niece acted prudently and managed the problem

cleverly. She accepted the seriousness of the problem
and promised to help. She told Amma to go with her
assuring her that she would resolve the matter. Amma
was relieved and willingly went out of the apartment

46
with my niece. They reached her home and Amma was
almost calm by then. She was given something to drink
as she was very tired by that time after the agonizing
experience. After some time when she had some rest,
Amma was back to normal but she could not remember
what had happened sometime back. Nobody wished to
remind her about the matter too. This was our first
experience of Hallucination.

However, Amma was very upset in general and was not

comfortable to stay at Bangalore thereafter. She was
still apprehensive that she was in some place that was
not her own. Though she could recognize her daughter
after some time, she was still not in an amicable mood
with her.

My niece called me to explain the situation. We felt that

it would be better to bring Amma back to Coimbatore.
So I went to Bangalore with my son by car and brought
her back the very next day. My eldest sister also
accompanied us on the return journey so that she might
be of help to Amma in case of need. All in all, the
Bangalore visit lasted exactly for four days!

47
 She realizes her problem

We considered the first experience of hallucination as

an exceptional situation. A few days after returning
from Bangalore, Amma was restless again at
Coimbatore and as usual I took her to our native place.
We were there for a few days when we had the next
episode of hallucination.

It was a usual day at our village home and the

morning’s routine was over. She had done most of the
cooking by herself with some help from me. The day
was passing by quietly. We had our lunch and were
sitting in the front room when all of a sudden, just as if
a switch was turned on, Amma’s face became very
tensed and she started weeping and shouting all at once
pointing out at something that she only could see.

“Look at all these disfigured children, oh.... I can’t

tolerate this sight.... so many of them... all of them in
such a pitiable condition, what an unbearable sight....”
It went on like that for few minutes. I tried to console
and convince her that there was no one there apart from
the two of us. However, she was very sure she was
seeing several disfigured children. At one point her
48
attention shifted and she was looking outside the
window. There the sight was still more gruesome; there
were a whole lot of snakes that were let loose by
someone!!

Amma was uncontrollable for those few minutes; I held

her close to me, keeping her in a tight hug and trying to
pacify her. This episode of hallucination might have
lasted hardly 10-15 minutes and then gradually she
became tired and sat quiet for a few minutes. When she
got out of it, she was very shaky and tired. I made her
drink some water. After a while, something very
different compared to the previous instance happened.
This time, she could sense that something was not right.
She asked me, “What happened just now? I think I am
having some problem; I couldn’t understand what it is”.

This was the break I really needed. I told her plainly;

“Amma, you are having some problems frequently
these days, though you cannot recall what happened
afterwards. We need to consult a doctor and see what is
wrong.”

49
She eagerly agreed to this suggestion. I told her
immediately “Ok, let’s go and meet the doctor. Let’s go
now itself”.

Within the next 20 or 30 minutes, I cleared the

household things, including the left-over items in the
kitchen and got ready to leave for Coimbatore. I didn’t
even wait to inform or ask our domestic helper or her
son (who was our permanent caretaker and close aide at
our native place) to come and see us off. We left the
house immediately as I wanted her to be brought back
to Coimbatore before she had a change of mind or
change of mood.

On the way, while driving, I contacted the doctor whose

number was in my diary for quite some time now.

(I had already identified this doctor for a possible

consultation when the situation allowed. I was hesitant
to contact him all these days because of my dilemma as
to how Amma would respond if she knew that she was
to be treated by a psychiatrist. But now the situation
was different as she herself accepted that she had some
problem.)

50
 I made the appointment for the next day itself because
I didn’t want to delay the matter anymore.

I continued to drive towards Coimbatore, my mind full

of thoughts; what would happen next, what would be
the outcome of the consultation? What was really
happening to my Amma? And what was in store for us
in the coming days? Was there any ray of hope?
Burdened with these thoughts, I sat at the steering
wheel, not really remembering that I was driving the
car. However, the car kept moving passively through
the regularly used roads, as if it knew the route on its
own. Thankfully, Amma had dozed off sometime
during the journey.

51
 The diagnosis

We went to the psychiatrist’s clinic the very next day. I

was not sure about what was going to happen. My wife
was more apprehensive. We thought it better to have
someone for company during the visit to the hospital.

My co-brother was on a visit to Coimbatore during that

time (My wife’s younger sister had settled down at
Coimbatore by then and was staying next to our house).
So, we took him also with us for company.

We had lengthy meetings first with a Psychologist

followed by the senior Psychiatrist. I explained the
incidents of the past few years and they had lengthy
discussions with Amma and performed certain tests for
her. I think they could easily identify signs of dementia
in her. To confirm, a CT Scan was suggested and we
took her to a nearby scanning centre. The doctors had
cautioned me that Amma might not co-operate with the
Scanning routine as she had to lay down inside the
tubular scanning machine and the sounds inside could
be quite difficult for her. However, Amma could
tolerate the procedure without much difficulty.

52
We got the scanning reports back to the doctor and it
was officially confirmed. Amma was suffering from
Alzheimer’s.

Intrigued by the experiences of the last few years, I had

already done my own research by reading lots of online
material about dementia / Alzheimer’s and I was almost
certainly expecting this news. So, it didn’t actually
come as a surprise. Rather, I was relieved to have a
confirmation that this was the reason for all the trouble
during the past several years.

Looking at the symptoms and the scanning reports, the

doctor was of the opinion that she had already crossed
the early stages and was now at an advanced stage. He
also confirmed that medicines might not be very useful
at that stage except for calming her down when she was
very upset.

The general advice was that we should continue to keep

her comfortable through personal care and affectionate
gestures. From their words, I realized that there was no
chance of any recovery or improvement at this stage.

53
We visited the clinic several times during the next few
months. In fact, more than the patient, it was me and
my wife who were interviewed regularly by the
psychologist and the psychiatrist. They gave us some
counselling sessions, advising us in general about how
to cope up with the challenging situation as the days
progressed from bad to worse. They did help us in
preparing ourselves better to meet the tougher days that
were awaiting us. At a certain stage, they had advised
us that we need not bring Amma with us as it could not
serve any purpose.

I remember the last time when I went to meet the senior

doctor after several months. This was during the stage
when Amma was very restless. Her physical condition
had deteriorated and we had the most difficult time in
taking care of her. During this visit, when I was
narrating the situation in detail, the doctor was a bit
emotional. I remember that he had then mentioned
about a close relative who was a similar patient and my
story made him recall his relative’s situation.

At the end of that visit, he politely requested me NOT

to visit him anymore as he felt he was helpless with

54
Amma’s case beyond that stage. I could understand his
feelings. He was finding our meetings becoming more
emotional and personal while serving no positive
purpose. That was the last time I went to the
psychiatrist.

I would be failing my duty if I do not record my

gratitude towards the Doctor and his team for all the
support they had provided during those days of great
distress. I still remember the kindness and caring
attitude shown by him and his team during all our
visits.

55
 The train journey

Amma had one more experience of hallucination soon

afterwards. This was almost three months after we had
taken Amma to the psychiatrist for the first time. The
treatments as well as medicines were having minimal
effect while Amma’s condition was deteriorating
gradually. Still, she used to behave normally except
during the periods of delusions or hallucinations, which
continued to happen occasionally.

My third sister from Mumbai had come with her

husband during August 2014 to take care of Amma for
a few weeks. She also suggested that she would like to
take Amma with her for a few days so as to give me
and my wife some relief from our tiring routine. I was
not very sure about this suggestion because of our bitter
experience during her Bangalore visit. Still, we thought
that perhaps such a problem might not arise again as
she was taking medications these days. Also, Amma
used to visit her regularly at Mumbai and enjoyed the
company of her grandchildren there. With similar
expectation that a change in place may bring in some
56
relief, we finally agreed for the Mumbai visit. Amma
was also happy about the proposed visit.

So finally, my sister and her husband returned to

Mumbai taking Amma with them by train. It was alright
during the day and they went to bed after dinner. When
everyone was sleeping, Amma was suddenly awake in a
very strange mood. My sister was close by and she
asked Amma what the matter was. Amma started
shouting at her “where have you taken me? Which is
this place? Why are you keeping me locked up here? I
want to go home immediately.”

She could not realize that she was in a train and was
under the impression that she was kept locked in a
strange house. Despite the efforts of my sister to
explain that they were travelling in a train (including
my Brother-in-Law and the other passengers nearby in
the compartment), Amma could not be convinced. The
situation continued like that for quite some time.
However, she became very tired soon after and fell
asleep. (All such situations of hallucinations used to
make Amma totally exhausted and physically tired).

57
 By the time she woke up, she had forgotten everything
about the night’s incident. The remaining part of the
journey was eventless, and they reached home in the
afternoon.

Amma managed to stay at Mumbai for several days

without any further problems. However, she was soon
having her usual mood swings and started to get
irritated over trivial issues. She found various reasons
to get upset and angry with my sister, which was
similar to the earlier instances of delusions. The only
difference was that now her anger and frustration was
directed at my sister instead of my wife. This was a
clear indication that her anger and frustration was not at
all personal or towards a specific person; it was the
disease that was causing such negative actions.

My sister never expected such an approach from Amma

towards her. Though she knew about Amma’s quarrels
with my wife in the past (by now she also knew that
these acts were unintentional and caused by her
disease), she could not digest the fact that Amma would
show such an attitude towards her. She was feeling very
sad and upset; it was an equally disturbing time for

58
other family members too. I realised that it was not
proper to keep Amma at Mumbai any longer. So, I
asked my sister to bring her back to Coimbatore. This
time I arranged for their travel by air as we could not
forget the difficult experience during the previous train
journey.

Amma had several such experiences of delusions and

hallucinations during the next few months. I have
narrated the above incidents of hallucinations in detail
so as to give the reader a clear idea about how difficult
such experiences can be for caregivers.

59
 Fading memories; forgotten routines

After the Mumbai visit, Amma was becoming restless

quite frequently with some more incidents of delusions
/ hallucinations in between. We still managed to
continue our shuttling routine between Coimbatore and
Panamanna for a few more months. My only priority
during these days was to take care of Amma’s needs,
likes and dislikes.

Until the stage of hallucinations, Amma was well aware

about the day to day activities and had no serious issues
of memory problems, except for short periods when she
had those strange experiences. She still remembered
people and was almost her usual self otherwise.

A flood of changes began soon afterwards. Usually, she

was fond of cooking and used to be in charge of the
kitchen always. However, these days, she was not very
comfortable with the kitchen routine. Physically, she
was becoming weaker and mentally, she was not sure
what needed to be done there.

Visible changes could be noticed while she was talking.

Gradually, she was becoming passive in her daily

60
activities. Earlier she used to get easily upset, and there
were numerous occasions when she would be agitated.
These types of mood swings began to subside and she
was gradually becoming subdued. She could be seen
sitting quietly lost in a world of herself. She stopped
taking interest in anything around her; her normally
favourite duties like cooking and housekeeping were
gradually forgotten. Soon, she was totally disconnected
from the daily activities including her own personal
routine.

When we tried to get her into some conversation, she

would answer some of our questions but the answers
became vague and meaningless. Still, she was able to
remember close people like me and used to show sure
signs of recognition. However, the warmth shown
towards near and dear ones were missing in her
interactions.

Amma’s younger brother and wife had come to visit her

during this period; I remember it was in March 2015.
By that time, she was physically weak and needed the
support of a walker to move within her room. She could
recognize them and she talked to them, though it was

61
only a few words at a time. I think meeting with them
was the final occasion when she truly recognized
someone and could engage in some kind of meaningful
communication. Amma’s elder brother also came to
visit her after few months. However, she could not
recognize him at all.

Somewhere during this phase of memory loss combined

with physical problems, I had brought her back to our
native place as she was feeling more comfortable there.
The frequent shuttle services had stopped as she had
gone beyond the stage of remembering my son and
wife. Earlier, she would demand to go back to
Coimbatore to meet them after a few days in
Panamanna. But now the situation was very different.
She could now recognize only those people who were
close to her from her earlier days. She was becoming
very weak physically, and I needed someone to support
her in all the daily routine. Being at Panamanna, we
had lots of people to help her. Our caretaker’s family as
well as our neighbours were always ready to help us. So
I had decided to keep her at Panamanna itself.

62
 Her mind is no more with her

Soon after, her physical weakness was getting severe

and it was becoming difficult for her to carry out even
the basic needs. Earlier, I used to take her to the
courtyard for short walks in the evening. But after some
time, she was finding it difficult to walk even a few
steps within the house. She also developed serious
disorientation problems; sometimes she could not
remember where the bathroom was. More importantly,
she could not recognize most of the people around her.

She would still request when she wanted to visit the

wash room. We had to guide and support her for toilet
visits. In the next stage, she was finding it very difficult
to get up from the closet seat and soon after, it became
a tough job taking her to the toilet. Even though I was
supporting her to walk, she could not coordinate her leg
movements and would just stop in between. Despite my
support, often she could not move her leg. At this stage,
I used to keep her feet on top of my feet and make her
move as I took the steps (More or less the way we play
with children and make them walk by standing on our
feet). Of course, this practice was short lived and soon,

63
she could not hold herself up and could not stand even
with support from others. She was quickly moving
towards being totally bedridden. I had already learnt
that such disabilities are symptoms of patient entering
the final stages of Alzheimer’s/ Dementia.

Thereafter, the changes were faster. She used to feel

hungry at odd hours at one stage. While lacking proper
sleep, I might have dozed off in between when she
would ask for food. This was happening mostly after
midnight, around 1 to 2 AM. We used to keep rice
batter regularly in the fridge in anticipation of this. So, I
would prepare one or two small “Dosas” for her.

Though she was asking for food at odd hours, her

appetite had been going down for some time and she
would eat only small quantities. In the next stage, she
was finding it difficult to chew and swallow solid food.
This was another symptom, when the coordination
required for such functions is gradually lost like the loss
of leg coordination needed for walking.

At one stage, she stopped eating by herself and we had

to feed her like we feed small kids. Soon, we had to
stop the normal menu for her. Everything had to be
64
made into a semi liquid form so that we could make her
swallow it, that too with lots of persuasion. Naturally,
the quantity of intake was getting lesser and lesser.

Incontinence is a normal problem at this stage for most

of the Alzheimer’s patients. The patient cannot manage
to pass urine or stool in a controlled manner. We had to
make use of diapers from this stage onwards. Initially,
it was very uncomfortable for her. But as days passed
by, she forgot about such unpleasant feelings too.

Another problem during these days was that she could

not sleep well and used to be awake for long hours
during the night. I could notice that she was agitated
and restless for apparently no reason. Her frustration or
anger was no longer directed at anyone around her. She
was just restless and would be uttering some
meaningless words continuously. I could sense the
struggle in her mind those days as I used to stay awake
and keep watching her till she slept. May be she was
trying to communicate something, but could not convert
them into meaningful words. Though very tired, she
could not sleep properly. This made it even more
difficult for me. I used to sit with her and try to console

65
her with some soothing words; but it was not of much
help. Some medicines were prescribed to help her sleep
better though these were also not of much use.

One more issue related to the difficulty in sleeping was

that she would keep on rolling over from one end to the
other end of the bed. We had to fix some protective
device on both sides of the cot to prevent her from
falling down. I am not sure whether she had any
physical discomfort due to which she was moving like
that continuously. Such continuous movements made it
very difficult to maintain cleanliness because the diaper
would get dislodged and the bed would get soiled.
Many times, I had to change her bed, clothing and
diaper more than once at night due to this problem. I
gradually learnt that usage of the right size diapers that
are of good quality as well as proper wearing of the
diaper are important factors to minimize such problems.

(The restless movements gradually diminished as the

days passed, though she continued to roll in the bed
almost till her final days. I think this was a blessing in
disguise; she never had any bedsores, may be because
of the frequent movements in the bed.)

66
 Sundown Syndrome

I started to notice some new patterns in her behaviour.

She would relax after lunch for a short nap and when
she woke up, she would be very agitated and make
repeated requests to “take her home”. Though we were
staying at our native place those days, she could not
remember that it was her home. This request used to be
a regular matter for quite a number of days and it would
almost always happen in the afternoons. I have read
about this type of peculiar behaviour which is known as
the Sundown Syndrome, where such patients become
more tense and uncomfortable during the afternoon
when the sun is going down. It was always a difficult
experience to pacify and manage her during those times
because we had no way to explain or make her
understand that she was in her home only. Perhaps, her
mind was going back to her childhood days during such
times and visualizing her childhood home.

In my understanding, as memory starts to fade in such

people, a common feature is that latest memories are
forgotten first and gradually the process moves
backwards. As the days pass by, they tend to lose most

67
of their memories about the present including day-to-
day happenings as well as people who are around them.
Over a period of time, most of the facts and people from
the present as well as the recent past are forgotten. Still
they can retain memories from early days such as
events, surroundings and people from their childhood
to a good level of detail. The main problem with such
memories is that they seem to visualize themselves
living in those days. It appears that they tend to behave
as if they are re-experiencing some part of their
childhood days once again.

So, when she was repeatedly asking us to take her

home, perhaps she meant her childhood home where
she was born and brought up. This seems logical as she
also used to re-enact some child like mannerisms during
those afternoons. There was a daily afternoon routine
those days when she would take great trouble to get up
from her bed and would stand up holding on to the
window bars. She would be tired quickly as she was
physically weak and would sit down. But the next
moment, she would get up again. Standing up and
holding on to the window bars, she would start counting
the numbers from 1 to 100 exactly like kids, who are

68
learning the numbers in their class rooms through
rhyming lessons (such class room sessions are quite
common in our village schools; I can hear the same
rhyming tunes from our neighbourhood primary school
even now). After some time, she would start counting
backwards from 100 to 1 and by the time this exercise
is finished, she would be too tired. Though she was
panting and sweating, she would not stop without
completing the full sequence. She would be so pleased
to complete the exercise which we could feel from her
voice as she completed the counting.

The experiences related to Sundown Syndrome were in

the later stages after the experiences of delusions and
hallucinations. She was probably re-experiencing her
younger days during such moments. Earlier, during the
stage of hallucinations, she was visualising some
imaginary scenes that might be based on shocking
experiences kept hidden in her subconscious mind. In
the above instance, maybe she was scared of the maths
classes in her primary school and wished to get back
home at the earliest after finishing the counting of
numbers. May be that was why she was making those
repeated requests to take her home.

69
 World of emptiness

We were entering the next stage, when Alzheimer’s

showed its all possible effects. This was when she was
passing on to a world of total emptiness.

She became so passive that she was not aware of

anything around her. She would lie down quietly
without any expression; no sign of pain or feelings; no
expressions in the face and only very minimal spoken
words. The sundown syndrome related issues had
stopped by now and she was finding it difficult to get
up from the bed on her own. (However, she still
continued to roll around in the bed). Though we
continued to maintain all daily routine like giving her
daily bath and change of clothes, she was not aware of
these activities. At a previous stage, she would strongly
protest when we had to support her to change her
clothes as she could still remember that it was a very
private activity. Now, she had no such sense, and she
would be staring at some invisible object while we were
giving her bath or while changing the clothes.

We were using a special wheel chair with a built-in

commode which was quite useful in that condition. We
70
could move her around in the chair and it could be
taken inside the bathroom. She could also be given her
bath while sitting in the chair. Since she could not get
up on her own, we had to lift her up and make her sit in
the chair. She could sit in the chair without support for
short periods of time and this practice continued till her
final days. The only problem was that she could not
hold her head straight as the days progressed. It would
be sliding to her sides as she had lost the ability to hold
her head straight.

She became totally bedridden somewhere during early

2015, and lost her memory almost in total towards the
middle of the year. It might have taken about 12 months
for her transformation from the period of hallucinations
(when she still remembered people and could
communicate almost normally) to the present state of
total blankness.

When she became totally passive and lost all

connectivity to this world, I should admit that it was
rather easy to take care of her. Though emotionally it
was the most difficult and trying period for us, she was
no longer demanding anything and was mostly very

71
quiet. In the previous stage it was quite difficult and
emotionally draining to take care of her when she was
in an agitated and restless state of mind; especially
when she used to make demands for taking her home
since we were helpless with such requests. Now, we
had to only ensure that the daily routine like cleaning
and feeding was done at regular times and there was
nothing much to do in between as she was mostly
silent. She wouldn’t even know if she was hungry. It
was for us to make sure that we fed her at regular
intervals.

I used to read some devotional books to her during such

periods. In fact, I read the epic “Sreemad
Bhagavatham” in total during this period in her
presence, knowing that this was one positive act I could
do for her at this stage. I was also chanting
“Narayaneeyam” regularly, praying for her early relief
from that condition, since we all knew that her health
problem was not curable. These were two books that
she used to regularly read during her normal days.

72
 Caregiver’s mental strain

The behavioural changes in the earlier stages of

Amma’s disease had caused lots of disruptions in our
family life as we were clueless about the reasons for
such acts. These events almost always resulted in
Amma getting upset with my wife. Though Amma’s
strange behaviour made us wonder what was going
wrong, we could not do anything about that. Of course,
I never blamed Amma for her apparent change in
behaviour or her accusing approach which was mostly
aimed at my wife. I used to console my wife and would
request her to maintain her cool despite all that was
happening. It is to be noted that she was still
affectionate towards my wife when she was in her
normal mood. Though she would insist on returning to
the village after an episode of mood swings, she would
start to miss my wife and son after a few days. She
would then request that we should go back to
Coimbatore.

When I look back, I can only sympathize with my wife

for all the trouble she had to undergo during those days.
Close ones around us would have thought that my wife

73
was responsible for the family tensions during that
stage. By the time we all learnt that Amma was an
Alzheimer’s patient, my wife had undergone lots of
suffering and mental agony. This was also the main
reason why I took the decision to quit my job, as
narrated earlier. At least from that time onwards, I
wanted to take over and relieve her from all the trouble
she was having during those three years when I was
away at Riyadh.

Since then, I was almost always with Amma except

where my sisters took charge of her so as to give me a
much needed break. Most of my time during that period
was totally confined to home. Even during the normal
days, I was not very fond of going out of the house and
I used to avoid crowded places as much as possible.
Even my occasional visits to the shops or such other
places were stopped during these days. The only times I
moved out was during the shuttle trips we used to have
between our Panamanna and Coimbatore homes.

Gradually, I was getting into my own shell of seclusion.

Amma’s worsening condition was taking its toll on me.
It is an established fact that it causes lots of mental

74
strain and emotional drain for close relatives, especially
for those who are continuously attending to an
Alzheimer’s’ patient. It is a very tough fate for close
relatives to experience the drastic behavioural changes
of a beloved person. The strange mannerisms,
quarrelsome attitude, restlessness, accusatory approach
etc. can be a mind boggling experience. In the later
stages, as the patient slips into the most tragic state of
losing his / her mind and memory, such an experience
can be very hard to accept. I was no exception and I
was feeling very depressed. During a certain period, I
was even reluctant to meet or interact with people.
Signs of depression were all around me.

There was one positive development in between. I had

become totally self-reliant in managing the household
affairs; cooking especially. I used to be at Panamanna
with my mother quite regularly and she was managing
the cooking and related activities in the initial stages.
However, as stated earlier, when her condition
deteriorated, I had to take over all kinds of house hold
work. One way this was good as it gave me some
diversion during the stressful period.

75
I have to mention the total support from our domestic
helper and her son. I should not actually use the word
helper; the mother and son were like part of our family
(and that relation still continues). Both were very
dedicated and always willing to help in anything and
everything. The son had been a regular part of our
family even before his mother joined us. He had
become almost like a son to my mother. When she was
alone at Panamanna (during my gulf job), he used to
give her constant support and company. He was also
taking care of the farming activities in our farm land
after my father’s demise. Both of them, as well as their
family members were very helpful to us during the
difficult phases of Amma’s health problem. Our
neighbours were also very supportive wherever
required. This is one great quality of the villagers; they
would be there to help during difficult times, without
any reservation or expectation.

My sisters used to visit us frequently, taking turns so

that they could provide all possible help to me during
those stressful days though they had their own families
to take care of and each of them had her own family
problems. (It is a strange coincidence that during

76
difficult times, your close ones are also having their
own problems making the situation still worse and not
being able to help each other as much as they may
wish).

My son, after completing his 12th standard, had elected

to pursue the Chartered Accountancy profession
through the direct entry program. He was doing his
articleship during this period. This meant that my wife
had to be at Coimbatore to take care of him but still she
managed to visit us at Panamanna frequently. My
wife’s sister was living very close to our house at
Coimbatore and as such, she used to take care of our
son during such visits.

We continued to be at Panamanna almost till the end of

2015. Towards the end of the year, I had a great
diversion from the agony and stressful daily routine,
which I would like to call as a divine intervention. This
event greatly helped me to maintain my composure.

77
 Renovating a temple, refreshing a mindset

During August 2015, I was given a totally unexpected

but most welcome break when I got an opportunity to
manage the renovation work of our village temple.
Now, when I look back on those days, I can say that it
was really a divine intervention that helped me to keep
floating during those stressful days when I was almost
on the verge of breaking down. During this period, I
had to interact with lots of people and it definitely
helped me to remain socially amiable. (As I wrote
earlier, I had become almost a recluse and didn’t like to
meet anyone those days).

This village temple was very special for all of us (like

everyone having a special bondage to their local
temple), especially for Amma. She was a regular visitor
of this temple during her healthy days. In her younger
days, she used to cover the 1km distance to the temple
by walk and would return home within a maximum
time of 45 minutes (as she had to attend to lots of
household responsibilities, including the needs of my
brother during those days).

78
When I was working in the Gulf, she had arranged for
renovation of the “Sopanam” area (the main entrance
with steps) of the “Sreekovil” (the equivalent of
‘sanctum sanctorum’ where the Lord resides) of the
temple. At present, the outer structure of the temple
known as “vilakkumadam” was in a very dilapidated
state and in urgent need of repairs.

A cousin of my father had been discussing with me for

several years on how we could help in the renovation of
the temple. He was willing to make a substantial
contribution, but was not sure how to arrange the work.
He came to our village to visit Amma along with two of
my cousins and he raised the proposal of renovation
once again.

Amma used to worry about the present state of the

temple when she was in a better state of mind. So, I felt
that the proposal for renovation during this period could
be in fulfilment of her long cherished wish.

The four of us had a meeting with the temple Manager

to discuss how we can help with the renovation. In this
meeting, an unexpected suggestion came up that we
might carry out the renovation work directly instead of
79
making a cash contribution to the temple management.
I still can’t believe how we all agreed to it as it was a
huge task. Since the work involved a sacred place, we
had to be very sure that all renovation activities were
done strictly in line with the temple rituals and more
importantly, we should be able to complete the work
properly once we started the work. We didn’t know the
exact quantum or nature of work involved and the
resources that would be required. Despite all these, we
decided to undertake the renovation efforts on our own.
With God’s grace, we could organize everything so that
the work could be executed in a systematic manner.

Since I was the only family member residing at the

village, I was in charge of managing all the work
relating to the renovation. We could raise the required
funds from our family members (apart from the
substantial contribution of my father’s cousin who
initiated the project) and we could complete the work
within just two months’ time. Of course, we could
engage a wonderful team of workers and supporters
(including the employees and Manager of the Temple),
whose dedicated efforts really made it all possible.
Later, when the renovation was completed in a grand

80
manner and much better than what we had originally
planned for, we all felt it was God’s blessings that
really made it possible.

I can’t really explain how I could manage all those

activities in between the daily routine of taking care of
Amma and managing the household chores. I believe it
was really a Godsend opportunity for me to come out of
the state of depression and seclusion. And more
importantly, it was a dream fulfilled for my mother,
though she was not really aware of it.

81
 Back to Coimbatore

The temple work was over and soon after this event I
decided to shift Amma to Coimbatore so that we could
be with my wife and son. My son was getting ready to
prepare for his CA Finals. He had cleared the Inter
exams in first attempt and was about to finish the
mandatory articleship training. I wanted to be near my
son and wife during this important period of his studies.
By now, Amma was oblivious to her surroundings and
whether it was Coimbatore or Panamanna, it made no
difference to her. Since she had become quiet and
passive, we felt we could manage to take care of her in
Coimbatore itself.

My second sister from Bangalore came to help me

while shifting Amma to Coimbatore. On that day, we
started in the morning and on the way, we thought we
should take her to the temple once more before we went
to Coimbatore, especially in view of the recent
renovation work. We knew that we could not take her
inside and that she may not know where she was being
taken. Still we went there and offered our prayers on
her behalf. We then drove towards Coimbatore.

82
 Days of oblivion

After we returned to Coimbatore, Amma was more or

less in the same condition for about nine long months.
She was already in a stage from which no recovery
could be expected. The only solace was that she was
not aware of anything (I think so; or was she having
any thoughts passing through her mind?) and she was
not having any physical pain. One way, this was good.
When you have a close relative in bed, the most
unfortunate part is when they have to suffer from
physical pain as well as mental agony. However, in
Amma’s current condition, she was oblivious to
everything. There was no physical discomfort to her
during this period as we always tried to provide her
with all possible care, duly ensuring proper hygiene and
cleanliness of her body, bed and surroundings.

Here at Coimbatore also, we could arrange the service

of a domestic helper, who gave good support to me in
taking care of Amma during the day time. We managed
to take care of her in such a way that she never had any
serious problems like bedsores. Once or twice, there
was the possibility of a bedsore developing; but we

83
took care of such symptoms immediately and never
allowed it to become a real problem.

At this stage, She was mostly quiet and slept / dozed off
for long periods. Still, I would sit with her when she
was awake and talk to her about something, though she
could not understand or respond to whatever was being
told.

Normally, in my earlier life, I was not comfortable to

express my love and affection towards my parents
openly. I was not used to small talks; never used to
exhibit affection through gestures like a hug or touch.
After my father’s death, I had thought about this many
times; maybe I could have expressed my feelings
towards him in a better and visible manner. Of course,
he too was not an emotional person and didn’t expect
such niceties. Now, when I knew that I would be losing
Amma sooner or later, I tried to sit with her at least for
a while every now and then and make her feel
comfortable. Though she might not realize anything, I
felt her inner sense would get some soothing comfort
through such gestures.

84
 Flashing memory

Though Amma had lost her memory and stopped

communications almost completely, she had shown a
glimmer of recognition on some rare occasions. Several
times during such moments, she used to address me as
if I was a baby; she used to utter two words clearly in
Tamil, “En Kuzhanthai, En Kuzhanthai” ( “my baby,
my baby”). This recognition would last for a few
seconds and again she would float back into that sea of
emptiness. I think she was seeing me as her baby from
my younger days during such moments. On a few
occasions, she appeared to recognize my wife and son
also. Likewise, she showed some moments of
recognition when my sisters had come to take care of
her.

During the temple renovation period, my father’s

cousin, who organized the temple work, had come to
meet Amma. He asked Amma if she could recognize
him. That day, there was a moment of perfect
recognition as Amma spoke almost an entire sentence...
telling him in Tamil something like “Of course I know
you; how can I forget you?”. It was a memorable day as

85
it was a very rare occasion when she was very clear in
her communication. Of course, it lasted just for that
minute only after which she was silent again.

Those precious occasions were very rare and occurred

without any specific stimulant; it was almost like a
faulty electric line getting connected suddenly and the
bulb glowing for a second before the darkness returned.

(Some days later, Amma’s elder brother had come to

visit her; at that time, she did not show any signs of
recognition despite the fact that it was her own brother.
For my uncle, it was a very bitter experience.)

I have read somewhere that the functioning of the brain

involves a network comprising billions of nerve cells.
These cells or neurons are interconnected through
junctions termed as ‘Synapses’. The synapses enable
communication between neurons, which helps to create
and recall our memories. Throughout our lifetime, we
keep on losing our brain cells and they are re-created
to compensate for the lost cells. This is called the
regeneration process. However, with Alzheimer’s
patients, the loss of cells is happening faster than the
regeneration process, resulting in substantial reduction
86
of these most vital cells in the brain, especially the
synapses. This results in various problems associated
with memory, cognitive skills etc.

In my layman’s mind, I imagine that may be some of

those ‘synapses’ that have been lost due to degeneration
of the cells, get revived for short periods and it might
be during such times that Amma was able to show some
sign of recognition. Of course, the connection seems
momentary and it goes off very quickly. Still, such
moments were precious and they are still fresh in my
mind.

87
 Life is a mixed bag

Something really good was going to happen very soon.

It seems God had kept in store the most wonderful gift
at a time when we were passing through the most
difficult period in our life!

Our son had appeared for the CA final examinations

during the month of May. CA Final exams consist of
eight papers in two parts and he had attempted both the
parts together. By now, you know what would be the
great news! Yes, the result came in July 2016 and he
cleared the final exams in the first attempt. We were all
very tense since the morning of the day on which the
result was to be announced. During the exams, he had
fever in between and had to write two exams with
fever. Naturally, he could not prepare or write very well
and he was tensed about those two papers. However, he
cleared all eight papers in the first attempt itself.

I recall the days when he started preparing for the CA

entrance exams 4 years ago after his 12th. We had a
family friend (he is a distant cousin) as our neighbour
in Coimbatore and his daughter was also planning to
go for the CA program. She and my son decided to
88
prepare for the entrance exam together and I used to be
their guide during the early stages. They continued to
study together throughout their preparations for the
Entrance (CPT), Inter (IPCC) as well as final exams. It
was now double celebration time for us as both of them
cleared all the exams together in the first attempt.

They both had a fierce but healthy competition

throughout their studies; she had challenged that she
would score at least one mark more than him in the
exams; and it happened exactly like that; she had
exactly one mark more in all the exams(10th, 12th, CPT
and IPCC) except the CA finals. In the final, she scored
20 marks more!!

Amma was very fond of our son (naturally!) and during

his childhood, he used to be very attached to her. My
wife and son were with her for almost one year during
1999-2000 when I was preparing to resign from the
Bank and planning to join the new job in Riyadh. She
always treasured the memories of those days when he
was just a baby. I remember some occasions during the
intermediary stages when she was losing her memory
gradually. During such periods, whenever she met him,

89
she used to visualize him as the baby from the younger
days. She would ask him to come and sit on her lap as
he used to do when he was a four-year baby. It was
very embarrassing for our son who was 17 / 18 years
old then. It was quite difficult for him to understand
that Amma was in a world of delusion and her vision
was that of a very different period.

Coming back to the present, this was the most

memorable day of our life. Soon after the results were
shown on the computer screen, I rushed down to
Amma’s room and announced the happiest news to her.
It made no difference to me whether she was listening
or whether she could understand this news. It was the
right thing for me to do at that moment. I feel Amma
did respond to this news and her face brightened up for
a while (or was it my imagination? I am not sure). This
was a momentous occasion, a day to remember and
here I was telling Amma about her grandson’s great
achievement. But was she really listening? Could she
register this glad news?

Common sense told me it is alright, but my wavering

mind was soon losing its control. Despite all the

90
unfortunate events we had witnessed during the last
decade, I had always managed to retain my composure
without becoming overly emotional. But at that
moment of joy, I broke down with a sudden outburst of
emotions which I could not control anymore. My wife
and son were taken aback and didn’t know what to do
at this. I think it was my wife’s sister who showed some
presence of mind to console me and bring me back to
my senses.

91
 Final days

By early September 2016, Amma’s health had

deteriorated very much and her body had become very
thin. We knew she was nearing her final days. Though
we could still manage to feed her the usual type of
liquid food, the intake was minimal as the days passed.
One surprising fact is that she used to communicate
when she felt she had enough food. She used to say
“porum” in Tamil meaning that she had enough or she
may show a hand signal indicating that she had enough.
This was perhaps the only regular communication
which she could maintain almost till her final days.

Towards the last week of September, she developed

chest congestion and it aggravated quickly into
pneumonia. Our family doctor visited her and
confirmed what we already doubted. He asked us to
observe closely her changes and told us that he would
visit her again after a couple of days.

I guess I should use the word ‘feared’ instead of

‘doubted’ in the above sentence; but no, I didn’t wish
for Amma to remain any longer in that condition. It
might appear cruel, but the fact was that for almost a
92
year, I was praying for her earthly suffering to end at
the earliest and to give her eternal release from this
world of ‘Maya’ towards what we call ‘Moksha’ at the
feet of the Lord. I didn’t pray for her recovery, as I
knew pretty well that there was no physical recovery
possible for the body with this disease.

The next two days were very critical. We knew that she
was having difficulty in breathing because of the
phlegm formation. Most of the people close to us from
our native place came to meet her. Our nearby relatives
were also visiting her daily. All of them were of the
opinion that she was too weak and the end was near.
Looking at the symptoms, the elders who had
experience in such matters felt that she might be
waiting for some unfulfilled wish to be completed.
There was a suggestion that since Amma was very fond
of our native place, she might have a subconscious
desire to breathe her last in our village home. There was
a discussion about such happenings in the past where
the end was prolonged and the soul would not leave the
body until such wish was fulfilled.

93
On the morning of September 30th, The Doctor came
again as promised, and by that time, there were sure
signs that the end was near. He confirmed this fact and
at that moment, I raised our thought of shifting her to
our native place if that would mean the fulfilment of the
last wish which she could not pronounce. The doctor
agreed to the suggestion telling us that it was a good
idea; the only thing left for us to do was to fulfil any
such wishes as that could give us some sentimental
satisfaction. A travel at that stage didn’t matter; she was
anyway fast moving towards her last moments.

It was around 9.30 am. We made an immediate decision

to take her home at the earliest. I arranged for an
ambulance and informed my sisters about her condition
and the plan to shift her to Panamanna. My 3rd sister at
Mumbai could not come immediately because of the
distance factor. The two elder sisters, my second
sister’s husband and their younger daughter managed to
get tickets from Bangalore by the mid-morning flight
to Coimbatore and they were scheduled to arrive by
2.00 pm. Amma’s elder brother at Erode also reached
Coimbatore immediately on hearing the news.

94
(Amma’s younger brother and wife were in the US
during that time with their children; for him, it was a
great period of distress as he could not be near her
during those final days. He was the main source of
support and comfort to her throughout her life).

After everyone around had a chance to visit her for a

final time, we were ready to leave for Panamanna. Our
son had left a little earlier for the airport to pick up my
sisters and we had agreed that they should meet us on
our way to Panamanna.

95
 The last trip

The ambulance journey began with me and my wife

accompanying Amma. As the vehicle moved forward,
we both were feeling lonely and both were very
emotional. I was recalling the umpteen number of times
I had travelled with Amma through this regular route
during our shuttle service between Panamanna and
Coimbatore. Now here we were, making one more trip
at the most inappropriate time, knowing pretty well that
this was the last time we would be taking her along this
regular route. I told myself; this is her final home
coming. She had asked me to take her home on
countless times during the period when she was
experiencing the ‘sundown syndrome’. And here on this
final day, I was taking her home though she could not
make that request any more.

Soon we reached the meeting point and my son was

already there with my sisters and family. They all had a
glance of Amma inside the ambulance itself as we
knew that her condition was worsening as time passed
by and we had no time to waste. We continued our
journey quickly.

96
We reached Panamanna by around 5.00pm and already
I could sense that her breathing was becoming
shallower as we approached our home. All those people
who were close to us in the village were waiting for our
arrival and they helped in shifting her to her bed. She
was settled down in the bed and everyone went inside
to meet her. She was very calm by now and the only
sign of life was the mild breathing. My sisters, brother-
in-law and niece were attending to Amma as I went out
to settle the payment for the Ambulance. In one or two
minutes, someone shouted from Amma’s bedside
asking me to come inside.

By the time I went in, she was breathing her last. We all
offered her the customary thulasi theertham, Ganga
theertham etc while chanting the names of God. She
was leaving the world of agony and pain to join her
husband and son in their heavenly abode.

Soon after, everyone was talking about the miraculous

situation. It seemed like she was just waiting to reach
her own home. It took only about 10 minutes after she
was brought inside for her to breathe the last. It may be

97
just a sentimental feeling, but at times we cannot
explain such astounding events.

Earlier, inside the ambulance, I was closely watching

her all the time, and I could clearly see how her
breathing was getting shallower. At one point, I thought
we might not reach home before she breathed her last.
But the climax was destined to be proper and be in line
with what Amma could have wished for. We felt we
were all lucky that we could bring her alive this final
time to her own place.

And thus, she left this world in the peaceful

environment of her own home, surrounded by her near
and dear ones, though she was oblivious of their
presence.

98
 Epilogue

On the 13th day after the demise, when all death related
rituals are over, we have the practice of performing a
“navagraha homam” which is symbolic of resuming
normal life after the tragic event. On that day, after the
poojas were over, our ‘Acharya’ gave a speech
explaining the significance of death related rituals, the
belief related to life after death and how the soul
continues its journey towards its final destination. He
also mentioned how well the children of the deceased
took care of their elderly mother and offered words of
consolation intended to bring us out of the sorrowful
state.

On conclusion of this speech, my father’s cousin made

a touching statement. “Everyone is talking about how
the son took care of his mother during all those difficult
days; It’s fine, but we also have to remember the
sacrifices and suffering of another person which made it
possible for him to manage everything so well. His
wife; but for her selfless attitude and support, it would
have been impossible for him to devote his full

99
attention for such a long period to take care of his
mother”.

I underline this statement. But for her support and

sacrifice, I could not have done whatever I believe I
have done towards taking care of Amma during her
difficult days.

$$$$$$$$$

100
 Annexure

Caring for a bedridden patient

Apart from the emotional strength needed by a

caregiver in managing an Alzheimer’s / dementia
patient, it is essential to understand the general
problems associated with a totally bed ridden patient.

It is possible that many of the readers may not have had

any experience in handling the special requirements of
such persons. It would be good to understand at least
some basic matters when someone may have to face
such an unfortunate event.

Patient’s diet

The quantity and type of food given to the patient is

very important. Food should be in required quantity and
in a form suitable for intake and easy for digestion. We
should not force feed a patient thinking that extra
nutrients will help to improve his/her health condition.

101
In case of terminally ill patients, they may not have any
appetite or hunger and it is quite possible that they may
refuse food at some stage. It could be an indication of
the inevitable and their body may not require food
anymore. It is meaningless to force-feed such patients. I
have seen people doing this just to show that they are
caring for their beloved ones. Many a time, such
patients may be able to consume food only in liquid
form. In such cases, if we force-feed solid food, there is
always a risk of food particles entering the lungs which
could result in serious problems like pneumonia. (In
many cases of terminally ill patients, especially those
suffering from Alzheimer’s / Dementia, the end comes
through the inevitable pneumonia which cannot be
helped anyway).

Body Hygiene

First and foremost is to ensure cleanliness of the person.

At some stage, the patient may develop incontinence
problems and may not be able to control passing of
urine and/or stool. Usage of appropriate and good
quality diapers can be a great help in such a situation.
Changing diapers should be done properly so that

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leakage can be avoided. Diapers need to be changed
frequently depending on the situation. The body should
be cleaned during each change of diaper. As far as
possible, giving body bath (perhaps only sponge bath /
towel bath may be possible if the patient cannot be
moved at all) at least once in a day is very helpful in
avoiding any skin-related problems such as rashes, bed-
sores etc and to prevent infections. A caregiver should
not hesitate or feel bad about cleaning the private parts
of a patient as these are areas where infections can
create big problems if cleanliness is not maintained. A
bed ridden patient, especially one suffering from
Dementia would not know /cannot do anything about
her own personal hygiene.

Though disposable Diapers are very useful and

convenient in case of bed ridden patients, we must also
remember that these are also very bad to our
environment. Hence, usage of disposable diapers shall
be done only when it is really inevitable. As a social
responsibility, proper disposal of used diapers should be
ensured. They should never be thrown in the roadside
dustbins which could easily attract stray dogs.

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While visiting bed-ridden patients, I have noticed bad
odour from the patients’ room many a time. This is a
clear indication that body hygiene is not properly
ensured for such patients. It needs dedicated service and
nursing care to avoid such situations. Smell is not only
depressive; it means the patient’s skin may be in
contact with urine / stool which is not properly cleaned.
This could result in skin rashes or bedsores quite easily.

Bedsores / pressure ulcers

If the patient is not in a position to move and is always

in the same position in the bed, it can result in bedsores
on the body parts that are bearing the body weight,
known as pressure points. Bedsores can develop despite
the best possible attention. Normally, bedsores can
develop on the back, heels, elbows etc. To avoid
bedsores, such patients should be moved and made to
lie in different positions from time to time (like on the
back for some time and then facing the sides for some
time). One must also ensure that the patient is
comfortable in these positions. Special beds like air
beds / water beds could be useful to help avoid

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bedsores. However, it is always better to seek medical
advice in severe cases.

Even with the best care, bedsores can appear on the

body. Look for signs of bedsores every time you clean
the body. New bedsores can be healed if attended in
time. However, if they are allowed to become serious, it
can be the most difficult problem and very difficult to
cure.

Also watch out for ANTS! They can create trouble for
bed ridden patients. Ants are attracted to the body smell
and in case of inert patients, the ants seem to know that
there is a chance of food and they can come in big
numbers to attack. The poor patient may not even be
aware of their bites as he/she might have lost the sense
of pain. In Amma’s case, I had faced this problem. It
had happened in a matter of few minutes when I had
gone to the kitchen for cooking some food. When I
came back, her foot was covered with something in
black colour. When I looked closely, it was a big bunch
of ants that were greedily biting on to her skin. I
couldn’t believe how so many of them could reach
there so quickly. By the time I removed them all, the

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skin was gone for almost two square inches on the foot.
Thereafter, I used to keep water-filled basins under the
four legs of her cot so that ants could not get in.

Allow a peaceful passage

It is possible for experienced people to know when a

terminal patient is about to leave this world. I am
talking about old age people who are bed ridden with
gradually deteriorating health and moving in the
direction of the inevitable. When it appears that the end
is approaching, I believe it is actually good for the
patient if we allow him / her to pass on to the next
world in a peaceful manner. In the good old days, our
family doctors would give clear advice in such
situations. However, these days, if a patient is
terminally ill, the doctors tend to recommend
hospitalization, ICU, ventilators etc., even though the
patient is in a stage where death is imminent and there
is no chance of recovery. I think if the patients in such a
state of health were able to express their preference,
most of them would prefer to have their final moments
in the peaceful environment of their home in the midst
of their beloved ones.

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I may not be right from the medical ethics point of view
and some people may argue that they would prefer to
try all medical options to keep their beloved person
alive despite the hopeless health condition. My personal
view is that forced procedures should not be used to
keep the patient alive in such situations. It is a good
idea in the recent legislation to allow a person to record
his wishes and directions as to how he should be treated
in such a situation. Of course, the procedures should be
simple and transparent, while it is also important to
ensure that such procedures are not abused.

Caring for the caregivers

Caregivers who are continuously attending on an

Alzheimer’s patient are prone to fall prey to mental
stress, depression and such other problems as I have
explained in the narrative. What could we do to avoid
or minimize their suffering? I think the best help for
such people is to make them understand the situation
they are in. My intention in writing this book is mainly
to create some awareness about the multi-pronged
difficulties that can arise when a close one is suffering
from such a dreadful disease. If we can really

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understand the problem, that itself will help to
minimize the impact. Further, if we can manage to take
care of the patient without being too emotional about
the situation, it could help. I know that is the most
difficult part. It is not easy to see a close person in such
a helpless condition where she is not even remembering
you and is not in a position to do anything by herself. It
is still more frustrating when you know that there is no
cure for the disease.

Close relatives and friends can play a soothing role for

the caregivers. If someone can visit the patient and the
caregiver regularly, it could be a big morale booster for
the caregiver. If they can engage him in conversation
about something positive, that can help. Still better, if
someone can take over the role of the caregiver in
between so as to give the regular one a break; that
would be the best help possible. My three sisters were
doing exactly this for me. Though they all had their
own family commitments, they managed to take over
the responsibility in turns so as to give me the essential
breaks. This really helped me to get recharged. During
such breaks, I used to visit my family at Coimbatore.
This practice of staying away from the patient also

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helps as you are not constantly reminded about your
beloved one’s sad plight.

Finally, if you can view it a bit philosophically, it may

make matters a bit easier. After all, this body is not
eternal; it has to return to the elements sooner or later.
Do your best to minimize the suffering of the patient.
Ensure that the patient is given the best possible care
you can; rest leave it in the hands of the supreme
power.

Can we prevent Alzheimer’s?

Frankly speaking, it may remain only a wish, at least

for the time being; we may not have any means to
prevent this disease. But still, theories are there that
positive thoughts and actions can help. If you can
approach everything around you with a positive state of
mind, it could help in reducing mental stress, anxiety
and depression. Even when a person is passing through
a handful of problems, if the challenges are accepted
positively, it can certainly help. Of course, this is easier
said than done and could remain an Utopian dream for
most.

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If we can avoid being alone, it could help. A pleasant
social lifestyle and close association with people near
and dear to you can do lots of good; at least to slow
down the progression of the disease.

Caring for Senior Citizens

These days, it has become a regular practice for senior

citizens to be moved out of their homes and shifted to
senior citizen homes or old age homes. One major
reason for this could be the fact that the next generation
finds it very difficult to get along with old people in the
long run. A common complaint is that parents are
unreasonably adamant and quarrelsome, due to which
the youngsters are not able to get along with their
parents. Of course, there would be many other valid
reasons for the youngsters not being able to take care of
their parents. I just wish to focus on this one problem.

If some youngsters feel it is impossible to live with

their parents for such reasons, I have a request to them.
Please try to understand one fact. When people grow
old, lot of changes take place in their body and mind,
which include the serious issue of degeneration of brain
cells. In the case of some who are very unfortunate,
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such degeneration can lead to Alzheimer’s / Dementia
eventually. However, in case of others, while they are
lucky not to have such serious health issues, the aging
process can still lead to behavioural problems like
irritable character, forgetfulness or adamant attitude just
because their system is not properly functioning like
before. It is possible that most of the unacceptable
behaviour from their side is unintentional. If you can
factor in this truth to their changed attitude, it may be
easy to reconcile with such behavioural changes.

I shall soon be a senior citizen by the age definition

(though I still feel like I was in college only yesterday).
I try to practice the following in my life these days,
especially after witnessing Amma’s life experiences
closely.

If I can practice “detachment” in its true sense as I grow

old, it would help me in many ways. With detachment,
I can try to reduce my emotional bonds and I can
control my wants. When I have only minimal wants and
if I am not overly attached to anything or anyone, I can
find satisfaction and peace of mind every day,
everywhere. I would be able to get along with

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everyone and even if I am alone, I shall find peace
within myself. This could help to minimize my
demands thus avoiding the chances of developing an
adamant attitude. Finally, with a positive state of mind,
it may be easier for me to manage the later stages of life
in a graceful manner.

If we can practice the above in its truest sense as we

grow old, I think that could be the best for us senior
citizens and it could be beneficial to our youngsters too
as we may not have any undue expectations or demands
from them.

In conclusion, if we can understand the problems of old

age and accept the fact that aging is an inevitable
process for everyone, we may be able to manage the
problems associated with old age in a much better and
graceful manner.

$$$$$$$$$$$

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Closing note:

Kindly send your feedback and comments on this book to the

author using the contact details provided in the copyright
page (also copied below). The author would also request
readers to forward the book to their contacts for a broader
circulation with the intention that the contents of this book
would be of use to someone facing similar situations in life.

E-Mail: suryanpk@gmail.com

Whatsapp number: + 91 9442919272

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