1. It is early January 2007.

As we sit in the balcony of our Salt Lake house,

soaking in the morning sun, she surveys the passing traffic with the curiosity
of a one year old. Then she looks at me and her eyes light up on seeing my
familiar face. She rewards me with a smile. Her day attendant, Jhunu, resorts
to some baby talk and gestures and her eyes dance in merriment. She responds
with a smile on her face, expressing all she wants to say, through her eyes.
She can no longer speak, nor does she have a memory. I continue to look deep
into her eyes hoping to read a little more, but in a while, her eyes waver, and
then she reverts to a faraway look, distant and remote, as if she has returned to
another world. But she has not always been like this. Sukla, my life’s partner
over the last 50 years was struck with the deadly Alzheimer’s disease,
sometime in 1994.This devastating and incurable disease has struck into the
very core of her existence, destroying a highly intelligent and charming
personality, almost to a state of non-existence, totally oblivious of all around
her including those dearest to her.

2. Sukla is now reaching the terminal stage of the disease. It has been an almost
uncharted and tortuous journey with her, over the past thirteen years. It started
with innocuous forgetfulness, occasional fits of temper, acute restlessness and
frequent behavioural aberrations. Then, like a tornado, the disease blasted into
her life with intense emotional instability, delusions, hallucinations and spells
of violent outbursts. From early 2005 onwards she has been gradually calming
down, but at the same time, she has lost her voice as also the best part of her
memory! As her care-giver, while going through the most sacred mission of
my life, it has been a journey of fire fighting, through one crisis to another,
absorbing a series of shocks, until one day, I realised that Sukla, my ailing
wife, had almost imperceptibly tiptoed out of my life, but mercifully returned
as quietly and stealthily as my very loving great grand daughter. This then is
the story of a care giver, now around 82 years of age, looking after his ailing
spouse, aged about 74 years, who have celebrated their golden wedding
anniversary, last year in February 2006.

3. New medicines and improved health care has increased the life-span of people
greatly. The percentage of those beyond sixty years of age has been increasing
and along with this, the number of persons suffering from Alzheimer’s disease
has also increased. As I write this in 2007, the number of known patients in
India, has already crossed the 3 million mark. The actual number may be
much more. As yet there is no effective therapy to halt or reverse the
onslaught of this deadly disease. At best, we have only medium range
medicines to retard the rate of deterioration of the victim. However, vigorous
research continues in this field and, in the not-too-distant future, a reasonable
effective therapy for Alzheimer’s disease is expected. For the present, care
giving plays a major role in prolonging the quality of life of the victim. And,
in the Indian context, most caregivers have to be family-carersand those
closest to the patient. So, along with the patient’s quality of life, the family
carer’s emotional survival assumes equal, if not greater, importance. The
 patient having no recollection of the immediate past, becomes inured to any
build up of cumulative stress, while a family-carer suffers from this day after
day. We do have guidelines for caregivers, published by the WHO,
Alzheimer’s Disease International (ADI), ARDSI Calcutta chapter and some
pharmaceutical companies like Novartis. These serve very well for
maintaining the day-to-day routine of an Alzheimer’s patient. But, there is
much beyond these that a family-carer has to through and is required to
survive through. It is an emotional roller coaster journey! Encouraged by
some dedicated members of the Calcutta chapter of ARDSI, and goaded
repeatedly by our children, I shall try to recount my experiences over the past
13-14 years, hoping that this may be of some use to future family-carers.

PRE-DIAGNOSIS STAGE

(The signals I ignored and the burden of guilt)

4. In hindsight, I know that Sukla was struck with Alzheimer’s disease sometime
during 1994, but it was not diagnosed till January 1996. Symptoms did surface
from time-to-time during the intervening period. But, in spite of being a
reasonably educated and a supposedly well-informed person, I continued to
ignore the signals – some very strong ones indeed! A massive sense of guilt
haunts me still. Such is the tragedy of our present day environment and the
collateral ignorance regarding this deadly disease. But before I go into the
details of this period, it would be relevant to touch upon the background of the
patient, to get the right perspective.

5. Sukla, in fact both of us, come from large middle class families. After three
brothers she was the eldest among the sisters and quite naturally, she took up
the role of second-in-command on the domestic front. Being closest to her
mother, she grew up sharing her responsibilities as well as her concerns and
her anxieties of bringing up a large, middle class family. She played her role
very well. No adult, male member of the family could go out of the house
without dressing properly or return home later than 9 p.m. without prior
information.

6. Sukla completed her schooling from Krishnanagar and then graduated from
Presidency College in 1954. Arranged by her parents we met in 1955 and
were married in 1956. Our early days together were laced with fond memories
of her college days and her batch mates, some brilliant minds like Sukhomoy
Charabarty, Nitish SenGupta, Amartya Sen and so on. I was an engineer from
Jadavpur University and after passing out from the Indian Military Academy,
in Dehra Dun, I joined the Corps of Electrical and Mechanical Engineering
(EME) in 1949. After our marriage in 1956, Sukla took to the army
environment very quickly. She had an open, forthright,t no-nonsense approach
to life. Highly intelligent, very quick on the uptake, she read a great deal and
 was blessed with a phenomenal memory. A reasonably good singer herself,
she was intensely fond of music. She called a spade a spade, never mind, even
if it amounted to dropping a brick here and a boulder there. Modesty was not
one of her great virtues and traces of intellectual arrogance laced with mild
sarcasm, sometimes put her in an unfavourable light. She was beautiful,
charming and had a compelling presence. Overall, an open-book, she had
many friends and also a few people who did not like her.

7. As an army wife, Sukla was an asset to the unit, always in the forefront for
organising welfare activities of jawan’s families – house-keeping, health care,
education or self-earning activities like machine knitting, stitching, handicrafts
and so on. She was keen on social welfare and this led her to do an MA in
Sociology, rather late in the day, in 1971, fifteen years after marriage, while
running a home and rearing three children. After my retirement from the
army, I joined a civil industry in Calcutta. At first we lived in South Calcutta
and then in 1983 we settled down for good, in Salt Lake City, in our own
house which she had named ‘Stithi’, meaning ‘settled at last’ as, by then, she
had moved eighteen homes after our marriage! At Salt Lake she soon joined
the local chapter of the AIWC, served as their Cultural Secretary, arranging
theatres, cultural programes, Ananda melas, took part in welfare projects and
also looked after their library. Simultaneously, for a couple of years, she was
heading the Ladies Club of our Block. Work took me to Chhindwara in
Madhya Pradesh for a couple of years during 1984-86, when she managed on
her own, running the house and continuing with her welfare work. She was a
voracious reader. About a 100 pages an hour was comfortable reading for her.
She took to quizzing in the early eighties and because of her phenomenal
memory bank, she dominated most quizzes as a participant and stood out even
as part of an audience. In short, her life was full. Quite often one comes across
the question as to who are more vulnerable to Alzheimer’s disease; the bright
and the active ones or the dull and the inactive. Expert opinion more often
veers towards the latter. If that be so, Ronald Reagan, Margaret Thatcher and
nearer at home, Sukla, my wife must have been the exception!

8. Meanwhile our daughters had been married off during the eighties and our son
left for Delhi in 1994. By then, I had completed one project for GEC in Salt
Lake Sector V, and joined another project by the NICCO Group and on
completion of that project I stayed on with them full time. Sukla was now
alone at home for the best part of the day. Sometime in 1994, Sukla started
showing symptoms of Alzheimer Disease, but at that time no one around her
had any idea of this deadly disease. All of us, colleagues, relatives, friends and
even family failed to recognise the signals. She had been misplacing keys,
pens, books, papers from early 1994. I also suffered from such lapses
sometimes and so I just took it as part of the aging process. I was nearing 70
and she had slipped in to her 61st year. On a few occasions she left the house
keys inside and was locked out. If I was in station, she came all the way down
to my office at Nicco Park to collect the key or waited until I returned. I
 gathered much later that once she had had to get our domestic help, Lata, to
climb up the rear balcony and somehow break through to open the door from
inside, as I had gone out of station.

9. As 1994 rolled over to 1995, the frequency of such lapses increased. As I

learnt later, she had been misplacing office papers, registers, library books and
so on, of the All India Women’s Congress local office. Apart from the
increasing frequency of forgetfulness, she also developed the tendency of
bursting into fits of temper, even when mildly challenged. Earlier in the
eighties and through the early nineties, Sukla enjoyed her work at the AIWC
or the Ladies Club very much. She organised many cultural functions at the
AIWC premises and the Bidyut Bhavan Auditorium at Salt Lake City. She
was then admired by her colleagues and she poke well of them. But now in
1995, she gradually became critical of her friends and colleagues. She no
longer looked forward to taking the responsibility of organising cultural
functions or welfare projects. This must have been due to misunderstandings
amongst colleagues caused by Sukla’s increasing rate of lapses. But at home
we had no idea. Soon, she started skipping important meetings or club days.
She started spending more time at home, but not on quality work such as
reading or writing. She spent more time in supervising day-to-day mundane
work and becoming increasingly critical of the domestic help.

10. By the second half of 1995 Sukla became irritable even while preparing
breakfast at 9 am before I left for work. She was always racing against time.
She seemed to find it boring and as time passed, she was finding it difficult to
make and serve just a few items for breakfast, in sequence. I felt upset. The
same person, in the absence of our domestic help, had single-handedly
prepared and served a 5 to 6 course dinner for twenty five of her Alaponee
friends in late 1993. Now her confusion and irritability in serving me
breakfast was totally inexplicable. I could not reconcile with this and felt that
she was being indifferent to my meagre requirement.

11. One evening, I was running a temperature due to viral fever and I told Sukla
that I would not have a normal dinner – just a couple of toasts and a cup of tea
around 9 pm. She was watching television when I fell asleep. Waking up at
11pm, I found that she had retired, after dinner, for the night. Such small
incidents continued to pile up misunderstandings between us and sometimes
resulted in rather harsh comments from me. Her reply in this case was, that
even if I had asked for her something, she had not heard it at all.

12. She had once gone to the Indane Gas office to book for cooking gas. Not
finding the booklet for booking the gas in its usual place, after her return, I
asked her about it, and she replied that the booklet was retained by the Indane
office. When I insisted that it was not the normal procedure, she flared up and
shouted back ‘Am I a liar? Go and ask the Indane office.’ A little later I came
across the booklet on my reading desk, which was not its usual place.
 Unwisely, I told her this, perhaps just to remind her of the correct procedure
and to rub it in that I was right. This was unfortunate. She flared up and said
that she had never touched the book and having misplaced it myself, I was
now trying to put the blame on her. I did not realise then, that she no longer
remembered that she had gone to the Indane office at all.

13. Around the end of 1995, the father-in-law of Sukla’s youngest and favourite
siste,r expired. She rang up to inform Sukla that while they would be sending
invitations for the ‘Sradh Ceremony’ soon, some of these may not , due to
usual transit delay reach on time. Sukla assured her not to bother and
volunteered to inform all concerned on the telephone. But she never did. Even
I was not aware of the tragedy! It was disastrous! When her sister frantically
rang up during the ‘Sradh’ ceremony Sukla shouted back as to why she had
not been informed of the tragedy. When her sister tried to remind her of her
assurance of informing all the others, Sukla retorted that she, her sister was a
liar and had forgotten to inform her. I was overhearing one side of the
conversation.

14. At around the same time another unusual incident occurred. As her mother
had been diabetic, I used to take Sukla for routine blood-sugar tests, to a
particular laboratory, periodically. On our doctor’s advice, this time, for the
first time, I took her to a different laboratory to give her fasting blood sample
and deposited the charges for testing her PP blood as well, before I went to
work in the morning. I checked back from the office to make sure she had had
an early lunch at 11am and had gone to give the blood sample at 1 pm. On my
return from office, at around 6 pm, when we visited the laboratory to collect
the report, to my surprise, I was given the fasting report only and the balance
money. The lab personnel informed me that that Sukla did not turn up for the
PP blood test. Sukla insisted that she had given the blood sample at 1pm. This
was getting messy so we left the place. While driving back, I just asked her if
she had gone to the lab we had been going to earlier. She was not sure and
looked confused. On visiting this laboratory, we found her PP blood sugar
report yet to be paid for. Much later I realised that Sukla had acted on her
earlier memory as the memory of her immediate past was not recorded. But at
that time, I had just no idea of such a phenomenon at all.

15. The last few incidents, coming as they did in quick succession, rang the alarm
bell loud enough and immediately after our son, Joy’s marriage in
Dec. 1995, we consulted a psychiatrist on our doctor’s advice. This was a
sensitive situation. On my request the visiting psychiatrist, very kindly
blanked out his letter head to conceal his professional specialisation. The
doctor asked for a CT scan of the brain. One glance at the scan, the good
doctor diagnosed that Sukla was suffering from Dementia of the Alzheimer’s
type (DAT) and we would have to live with it as there was no medicine to
even halt the onslaught of this disease, leave alone cure it and that the
available supportive medicine could only retard the rate of deterioration. It
 was difficult to accept that such an incurable disease existed and this could
happen to Sukla. So we consulted a neurologist. On his advice, MRI and EEG
were also done. The reports confirmed the initial diagnosis.

16. Finally Sukla’s treatment started from early 1996, after she had lived through
an inglorious existence for about a year and a half, a very regrettable and
avoidable lapse, which haunts me still with an intense sense of guilt. Should I
not have consulted the doctor earlier? Was it just my poor observation or utter
insensibility? Certainly not any one of these. I was proud of her and loved her
for what she was and also for being the mother of our three wonderful
children. Then what happened? In hindsight, I realised that it was just that in
my subconscious mind, I was totally unable to accept that Sukla could ever
have any mental impairment. Not a person like her! I was unaware at that time
and even several years thereafter, as to how this deadly Alzheimer’s disease
could destroy a brilliant mind to cipher. It was a terrible lapse on my part and
it can happen to any other family.

17. During the best part of the years 1994-95 without our knowledge, Sukla faced
ignominy, suffered humiliation and rejection from her colleagues, relatives
and friends and more importantly from those closest to her i.e. her children
and her husband albeit in lesser degree. No one around her, not even she
herself, knew that SHE HAD BEEN STRUCK BY A DEADLY DISEASE.
Meanwhile misunderstandings piled up and she faced abrasive and harsh
comments from outside and even at home. A totally helpless situation for the
victim. This happens even today, due to a lack of awareness about
Alzheimer’s disease even amongst the otherwise well-informed people. This,
in spite of the fact that the number of AD patients has been increasing
alarmingly all around us. Many, even now, take for granted, the symptom of
forgetfulness in elderly people merely as an age-related problem and
occasional fits of temper or mild behavioural discrepancies, just a mental
aberration, common amongst old people, which one has to just live with! As
the symptoms grow more pronounced, the person affected in most cases, is
kept secluded in one corner of the house, tied down to a chair, if required,
away from the mainstream and of course from the outsiders. Their families do
not realise that such isolation dents their self-esteem, destroys their confidence
and hastens their end. I have known cases when the patients treated thus, did
not survive beyond 7-8 years. Over the past decade, being intensely involved
as a family-carer, I learnt the hard way that early detection of Alzheimer’s
disease, creation of the right environment for the patient, both mental and
physical, and the commencement of supportive treatment can prolong the
quality of life for the patient for a much longer time. The reasons for this are:
• An early diagnosis may reveal other types of dementia
like vascular dementia or dementia resulting from early
injury or depression, which are curable and early treatment
may be started.
 • Secondly, for the patient suffering from Dementia of
Alzheimer type, supportive treatment can be started which
can at least slow down the rate of deterioration of the
concerned brain cell and prolong the quality of life of the
patient.
• And thirdly, the most important of all, one can protect the
patient from sustained humiliation, rejection and ignominy
and all round misunderstanding which, I believe pushes the
patient into inactivity and depression accelerating the
course of Alzheimer’s disease.

18. How does a family member, a lay person, recognise the early signals of
Alzheimer’s disease? To make these easily discernible, I have gone into great
details of the signals, ignored in Sukla’s case. I would now like to share what I
learnt through my mistakes.
Alzheimer’s disease adversely affects the memory, thinking and
behavioural aspect of the patient. To begin with, forgetfulness resulting from
memory lapses, manifests itself predominantly. In some cases, if reminded of
the matter, the person promptly or after some hints, remembers and, if needed
apologises. In some other cases the person not only fails to remember the
matter when reminded, but comes back with angry denial just as in the cases
of the missed Sradh ceremony or the loss of the Indane Gas booklet by Sukla.
In the latter case it is indicative of Alzheimer ’s disease and a doctor or a
memory clinic should be consulted at the earliest.

I would like to explain the two different types of forgetfulness by comparing

our memory bank with a storehouse. Fresh events like the arrival of new material
gets recorded in our brain, like the store material in the ledger and then the
memory is stored just as the material is placed in the bin. When the material needs
to be issued, or the memory of the event to be accessed, the store keeper retrieves
the item from the bin just as the brain scans through the memory bank and
retrieves the memory of a particular event and the person remembers. For age
related forgetfulness, the memory of the event gets recorded and stored but due to
the passage of time and our declining mental faculties,(just as if the store lighting
or the store keeper’s eye-sight has dimmed), some groping around and reminders
are needed before the material or the memory can be retrieved and the person can
remember. Sometimes of course, one may not still be able to remember a
particular event, but there would not be any strong denial or angry outburst from
the person who may just appear to be confused, helpless or apologetic. But in the
case of a person suffering from Alzheimer’s Disease, the patient fails to record the
event in the memory bank and therefore there is no possibility of retrieval of the
memory and hence the strong denial and angry outburst from the patient when
challenged.

19. Apart from the obvious forgetfulness, there are other subtle signals,
discernible in case of AD patients as were evident in Sukla’s case. One is the
 gradual decline in interest in prime quality activities and a tendency of
withdrawal from these. Along with this, there may be a degradation of job
profile as in Sukla’s case. Rather than spending more time on intellectual
pursuits, like writing, reading or other creative work, she concentrated on
mundane day-to-day activities, usually criticising domestic staff for improper
sweeping, cleaning , dusting or washing. The patient also loses focus in day-
to-day routine activities and finds it difficult to execute simple routine work
demanding sequential attention like the preparation and serving of breakfast.

Summing up, whenever one observes in a family member, particularly older ones,
such symptoms of forgetfulness, a degradation of job profile, a gradual decline in
handling familiar day to day routine activities and a tendency to withdraw from
outside activities, one must contact a memory clinic or a doctor for early
diagnosis and treatment as required, and save the person from continued
humiliation, which results in accelerated deterioration.
There is another common symptom of language difficulty - the patient running
short of words to express heself. I have not mentioned this, as Sukla never
exhibited this in the early stages, but only when she was several years into
Alzheimer’s spell, perhaps because she had a head start with a wider range of
vocabulary based on her above average memory bank.

EARLY MODERATE STAGE (1996-2000)

(The silent killer stalks)

20. Reverting to the course of events, immediately on diagnosis of Dementia of

the Alzheimer’s type (DAT) in Sukla’s case, I informed all relatives and
friends and colleagues and requested them to pass on any message requiring
action, separately to me. I also asked them to very tactfully not give her any
responsibility. This was so that she continued to feel that she was part of the
team. Over a period of time, I realised that we should throw an invisible
protective cordon around her, without her knowledge, so that she did not
suffer from rejection and humiliation at any time. This did not mean isolation
but, just the opposite. She should be free to get full exposure to her existing
world, without having to suffer from any misunderstanding. She should feel
that she belongs to the mainstream, is wanted by all around her and should
have as much say as before, regarding things happening around her. A
difficult process, but it must be strived for!

21. Thus Sukla continued to attend to her outside activities, if she remembered the
dates, and came back without any discernible discomfort. This was because
her colleagues and friends, knowing about her ailment, did not load her with
responsibility to make her feel challenged. At the same time it was to their
great credit that somehow Sukla was made to feel that she was a part of the
team. My deep gratitude to those who made this possible. At home, Sukla kept
on doing whatever she wanted to do, except those involving her personal
safety. She participated in the preparation work in the kitchen but not in
 cooking without someone watching close by. For her there was no solo
activity in the kitchen. This quiet and gradual process of her shifting from the
centre of the administration to the centre of attention, kept her going
outwardly, as normal as possible till around the year 2000.

22. During this period, we travelled extensively both outside and inside the
country. Immediately after her diagnosis we decided to visit USA to be with
our grandchildren at San Jose, in Silicon Valley, where our daughter and son-
in-law worked. Sukla had earlier visited them twice during the late eighties
and the early nineties, travelling alone via the eastern route. This time we
planned to via the UK, since she had never been to the UK. We had talked
about this trip together, many times, but with one project after another I had
not been able to make it.. Now, perhaps due to some nagging in my
subconscious mind, I was prompted to take the decision to travel, though
consciously I did not yet link the ailment to the hurry in the trip
In mid 1996 we left for the USA via UK. At Heathrow we had to spend a
few hours in transit, when for the first time I had to leave her alone with the hand
luggage to go and freshen up. On my return, I found her at the same place, her
eyes anxiously scanning the way to the restrooms. Now it was her turn to go. For
the first time after the diagnosis, she was to be entirely one her own, in an alien
place to fend for herself. After some anxious waiting which seemed to like ages,
she returned with her toilet kit intact. Again, on arrival at Kennedy airport, at New
York, as our host, who was driving down all the way from Atlantic City had not
arrived, I was compelled to leave Sukla by the kerbside with the luggage trolley to
call our daughter at San Hose. This was before the cell phone era. On my return I
was very relieved to find her standing guard at the luggage trolley.

23. During our tour, though I tried to be with her most of the time, on several
occasions, she had to be left alone, while I went to make calls, exchange
currency or to buy tickets or snacks. She could find toilets, wash basins,
drinking water from far without much help. She could converse with strangers
when spoken to without any discomfort. Within a few days my anxiety about
her disease subsided and I started believing that Alzheimer’s disease meant
only occasional forgetfulness and some unjustified fits of temper from time to
time. And I felt therefore, that we should be able to combat through without
much difficulty. A grossly premature and short sighted summing up of a long
drawn out and difficult journey through an uncharted course!

24. Nothing untoward happened during our stay at San Jose and our tour of the
East and the West coast. She was very comfortable with families she had met
during her previous visits, and apart from being a little quiet they did not find
any difference in her behavioural pattern. By now I was confident that Sukla
could handle almost everything like everyone else. On our visit to Disneyland,
after a few soft rides I took her on a mild roller coaster ride. On the first
downward slide she screamed and wanted to jump off while I held her tightly
through those few moments. An entertainment for me was really a cruel
 torture for her. I wanted to forget the incident but it kept coming back. Around
early Sept 1996, it was time to leave USA. Our flight from JFK to Heathrow
was going smoothly till we hit some turbulent air pockets around the Bay of
Biscay causing the aircraft to shake wildly and go through successive vertical
falls. Sukla’s hand held in mine suddenly went very cold. She had stopped
talking. I thought she was sinking. Holding her hand tightly I whispered into
her ear that our children were reasonably well settled; they had their lives to
live; after sometime time they would not miss us so much. On the other hand
God had not wired us on to the same switch. Should the aircraft crash, this
would be a golden opportunity for a grand exit together from this world,
holding each other’s hand, for whatever be our destination, heaven, hell or any
other place. Her palm gradually warmed up. She looked at me and managed a
weak smile that said ‘I’m alright because you are with me’.

25. On my way back we spent a week in the UK. This was a much longed for visit
together, since I had been in the UK for a long spell but Sukla had never been
there. I thought it would be wonderful to together visit my favourite places
including the Lake District. We went through the usual tourist destination in
London seeing the places I had stayed at as a student in the early fifties. All
along she handled herself very well. When I moved off far enough to take her
photographs against the background of the famous landmarks of London, she
even enthusiastically exchanged views with a retired officer of the British
army regarding social life in the Indian army which was so much like that in
the British army, while we were taking a walk in the Hyde Park. Later, on our
way to the north, the railway journey thrilled her very much, as familiar
scenes of the English countryside, which she had only seen pictures of, swept
past , particularly the one where a flock of sheep were grazing on gentle
sloping hills in the evening with smoke billowing out of a cottage chimney in
the background. She was careful not to burst out in her usual exuberance of
expressing happiness, in the presence of fellow passengers, and she spoke
only in low undertones. But she was thoroughly enjoying herself and I was
happy.

26. During the early years of her ailment from 1996-2000, I encouraged her to do
the things she liked. In the morning, we used to have tea in the balcony and
Sukla would read the newspaper for me. In the evenings, on return from work,
we would go out for a walk, meet people, exchange pleasantries, go to the
nearby local market, on any small pretext , where she would converse with the
shopkeepers she had dealt with since the early eighties. We also frequently
called on friends and relatives. At home quite often I got her to speak to her
brothers and sisters on the phone about their early childhood. Even during the
late nineties, she could discuss, quite logically, matters relating to literature,
politics and culture. One such class mate of hers from Presidency College, a
Member of Parliament in the late nineties, visited us once in a while and Sukla
discussed politics with him. He just could not believe that she had any ailment
at all, when I told him later. I realised over a period of time that within a close
 and friendly circle, she could open up and maintain a reasonable conversation
based on her past memories and could react instantaneously to what was being
said. But with outsiders, she gradually became cautious and restrained.
Frequent exposure to known people, I believed, jogged her memory and her
cognitive process and retarded the rate of deterioration. Outwardly, Sukla
showed very little discernible deterioration. This gave me a false sense of
complacency and I thought both of us would reach old age this way and
finally make our exit without much fuss.
27. My expectations was however short-lived. Inwardly, the deadly disease,
despite medicines, was marching on. The silent killer was slowly, but steadily,
destroying the core of her existence. There was a gradual decline of her ever
sharp mental faculties. One day in mid 98 I realised she could no longer focus
enough to read a clock. (Much later I learnt that drawing a clock face is a test
for a patient’s state of dementia). Almost simultaneously she was unable to
dial a phone and find a number in the directory. An excellent letter writer in
her time, she failed to write a few sentences with continuity of thought. But
thankfully, she could still read. Earlier, she could read magazines such as
India Today, Desh, Sannanda, Femina from cover to cover, Bengali novels
and English thrillers as well as the daily newspaper. I remember she was very
sad when ‘The Old Lady of Boribunder’ i.e. the Illustrated Weekly of India,
hit the stands for the last time. She read about 4-6 hours a day. But from 1994-
95 onwards she was avoiding sustained reading and concentrated more on
picture magazines and newspaper headings. Earlier she would take pride in
reading any prize winning book as soon as it hit the stands. But in the nineties,
she did not show any interest in going through ‘The God of Small Things’ and
later ‘The Interpreter of Maladies’. By 1999, she had almost stopped reading
on her own. However, as a routine, while having our tea every morning on the
balcony, watching the slowly increasing traffic flow by, she would read the
newspaper to me, right up to the end of 2002. I was suffering from Glaucoma
and cataract in both eyes, but could just about manage still with a magnifying
glass in the office. However, I pretended that even with the glass I was unable
to read. She tried her best to oblige me till the end of 2002. She could no
longer move on to the next column in sequence. As for comprehension, I
doubt if she could understand anything she was reading.

28. We always enjoyed the humour pages of the Reader’s Digest. One morning in
the late nineties, on an impulse to share with her what I thought was a good
joke,I read it out to her. It went like this: A grandmother celebrating her
diamond marriage anniversary was asked by a youngster if she had at
anytime, during her 60 year old partnership thought of another man, even in a
passing moment. The grand lady agreed that she had, but qualified that every
time she had, she had controlled the thought by putting a pea in a glass jar in
the kitchen, as a restraining symbol against these lapses. Grandpa, while
appreciating this frank confession, hurriedly marched into the kitchen and
picked up the jar which had only one and a half broken peas showed it to the
gathering and announced proudly that this little misdemeanour in sixty years
 was alright with him. To this the grandma with a mischievous glint in her eye
said, ‘But darling didn’t we have pea soup last Saturday?’ Sukla did not
respond to the punch line and stared as if she was waiting for it. In frustration,
I repeated the joke, but with the same result. Much later I realised, that by the
time I had reached the punch line, she had forgotten the build-up narrative, as
her brain had ceased to record any fresh input. Over the years without our
knowledge, Sukla had not only been losing short term memory, but also
abstract reasoning and cognitive flexibility. Strangely though, all our hilarious
anecdotes tucked quietly in her pre-nineties memory sustained for a much
longer period and helped me to tide over some difficult times during the crisis
period. More on this later.
29. From mid 1999, I had to visit Bhuvaneshwar with increasing frequency as the
project there was in full swing. Initially, Sukla stayed back under the care of
Lata our whole time help for even 7 days at a time. I used to leave the
medicines for the morning, noon and night in the red, white and black packets
respectively. I tried to speak to her everyday, but she just cut off, the moment
she heard my voice. She was unhappy about being left alone and this was her
way of showing it. But at that time I thought she was just being unreasonable.
When in Calcutta, I had to spend 8-10 hours at work. In my absence, Sukla
used to follow Lata to the outhouse after lunch, spend the day with her till I
returned home. Later I came to know that sometimes she tired of watching
Lata cook she even slept in the outhouse in the afternoon. She was indeed
very lonely. So the next time I took her to Bhuvaneshwar, and this became a
routine about 2-3 times a month. During the train journey she was still able to
go to the toilet and return to her berth without help. At our guest house in
Bhuvaneshwar she was very happy to spend the time in the lounge or in the
dining hall and interact with the project team, most of whom she knew from
Calcutta. I recall she could even, very effectively, tease a confirmed bachelor
of our team SAMPURNANANDA as to why he still remained
ASAMPURNA, not having married. Exposed to familiar and to some extent, a
captive environment, she remained happy, normal and communicative, not yet
short of words to express herself. In the company of strangers, like most of us
she was somewhat reserved. This was a change as earlier, she had enjoyed
initiating conversations in any informal gathering. One thing she intensely
disliked was loneliness!

30. On the behavioural side Sukla developed some aberrations by the end of 1999.
At home she was forgetting that she was the host and felt unhappy, if she was
not served sweets and other refreshments along with the guests. But even at
this stage she was conscious not to show it most of the time. She was not
comfortable if there were too many visitors in the house and gave the
impression that we might run out of food. Sukla used to be very happy when
her sisters, all younger than her, visited our place. In fact, the yearly ritual of
Bhai Phota, when all the brothers and sisters got together is organized at our
place even today. I always welcome this since such get - togethers brought a
pleasant change in her. Whenever one of her sisters visited, I used to request
 her to organise Sukla’s wardrobe properly so that they could keep track of her
clothes. They did it happily. But, after a while, their visits diminished and
were very few and far between. Then I had to depend on our daughters’ yearly
visits. It was only years later, that I came to know that Sukla had become
suspicious that her sisters would take away her favourite saris or cosmetics
and somehow conveyed the suspicion to her sisters. They were baffled as they
did not understand how their affectionate and ever-so-generous didi could
think that way. Thus their visits became infrequent but for obvious reasons
they did not have the heart to tell me the reason.

31. Sometimes gifts brought by her sisters were given away to another sister or to
our daughter-in-law, right in front of her a few minutes later. She had no recall
of short term memory and so she had no idea that it was a gift for her.Once
again, no one mentioned this to me. They did not know that it was a symptom
of Alzheimer’s disease and thought that their sister for some reason had
changed.

32. Sukla used to visit the local AIWC office sometimes along with some
neighbours. Often she would leave a meeting halfway through and walk back
home alone. On one such occasion, one of her friends, finding her unable to
cross the road through traffic helped her across. But once through, she walked
in the wrong direction just opposite to the one leading to our house. Her friend
put her on the correct path and informed our domestic help Lata who never
told me anything, as she was supposed to escort Sukla whenever she went out.
Her friends and I knew that Sukla was suffering from and Alzheimer’s disease
but we knew so little about the developing symptoms that we thought that the
changes in her behavioural pattern were due to her absent-mindedness or
idiosyncrasies growing with ageing. Worse still, no one thought these serious
enough to inform me, because at other times she was so convincingly normal.

33. At home in our effort to make her feel that she still was in the mainstream of
activities, we gave her a free run of the house. With declining interest in
quality work, she would walk into the kitchen and make some tea for herself
and she often left the gas burning. On one occasion, she and Lata went out of
the house not realising that the gas had been left burning. Thank God she
returned home with one of her sisters who somehow handled the situation.
The charred utensil on the burner was in a near-melting state. Had she
returned alone there could have been a serious accident. But then again, I was
not told about it either by her sister or by Lata, as Sukla enjoined on them not
to tell me anything, fearing that I would be very angry, because I had
repeatedly told her not to handle the gas burner ever. It was Lata’s fault also,
as she left the house without checking the gas. So, she preferred to keep quiet.
The sum total was that I was left in the dark. Without this feedback I
continued to be rather complacent about Sukla’s ailment.
34. During the end nineties I was still at work 8-10 hours a day and could hardly
spend 5-6 hours a day, with Sukla during her wakeful hours. Thus I did not
know a lot of things which I should have known. Most of the time however,
she appeared so convincingly normal that quite unconsciously I started
believing that whatever decline of her faculties had to take place had already
happened. The minor aberrations of her behaviour, was perhaps due to a
residual effect which could be corrected by timely guidance, like what you
would do for a child. Such an absurd thought process was partly due to my
profound ignorance regarding the progression of the disease and partly due to
my confused mindset. Deep down within me I refused to accept that the very
core of Sukla’s existence was being relentlessly destroyed by Alzheimer’s
disease. I believed that the day I accepted that, Sukla would be lost from my
life.

35. As a result of this, whenever I was at home, in my enthusiasm to maintain her

normality by exposure to the mainstream, I developed the tendency to frown
at her minor lapses and corrected her sometimes, betraying impatience and
harshness, believing that such timely corrections would help her to stay on the
rails. I failed to realise that the process did not help her at all. On the contrary
I realised much later that, the well-intentioned correction process destroyed
her already dying self-confidence further and faster, forcing her to develop a
fear psychosis, which prompted her to hide her lapses whenever possible, and
she exhorted others to do so too. My absurd logic for maintaining her
cognitive process by timely correction left her unprotected and vulnerable and
left me grossly ignorant as the care giver. Looking back I shudder to think that
during that period anything could have happened to Sukla. She could have
been run over while wandering about unescorted and trying to cross a road
during traffic hours or met with an accident in our kitchen itself. I am
highlighting this as it could happen in any other family with an Alzheimer’s
patient. We had over-relied on her seemingly normal behaviour and grossly
neglected her safety. That she is around with us in one piece is a miracle – an
unearned gift from God.
36. Towards the end of the nineties another serious lapse on my part came to
light. I had come to believe that Sukla s decline of mental faculties resulting in
forgetfulness and behavioural discrepancy were all that was expected of a
person struck with Alzheimer’s disease and that the patient had to live with it
like other old age ailments. I believed that all that we were required to do was
to take good care of the patient and continue to administer prescribed
medicines. I was unaware, like most others, of the severe conditions such
patients might have to go through at a later stage. This mindset, accentuated
by almost imperceptible changes outwardly, in Sukla’s behavioural pattern
somehow diffused my focus and robbed me of any initiative to seek periodic
consultations with the doctors, to search for newer medicines and better
treatment. The fact that I was spending long hours working away from home
did not help matters any better. As a result Sukla continued to stay on
Hydergene from 1996 to end 1998 while during this period newer medicines
 for Alzheimer’s, though supportive only, were introduced. It was an
unforgivable lapse which perhaps has cost Sukla a few years of quality life. It
was only at the end of 1998 that Sukla after a set of tests MRI & EEG - was
prescribed Arisept (Donepezyl) by the doctor. At that stage, it had almost
become too late for Sukla to undergo such tests, due to her restlessness.
Aricept however was not available in India. Advised by our neurologist I
procured Aricept from a local medicine outlet, which brought it through
carriers from outside the country. The supply was irregular and I was always
under pressure trying to prevent discontinuity in treatment. Yet I was happy
hoping that such expensive medicine would produce some good results. But
by around mid 2000 I was forced to discontinue Aricept as supplies dwindled
down. On the doctor’s advice we changed over to Exelon (Revastigmine) a
Swiss medicine which was available regularly from a Novartis outlet in
Kolkata. Thereafter Sukla continued with Exelon. In between we did try a
newer and supposedly more effective medicine Remyleen (Galantamine
Hydrobromide). It was however discontinued after three months since the
medicine did not bring any discernible improvement, nor was it available in
India and in any case it was twice as expensive. However, by the sustained use
of Exelon, and gradual increase of the dosage, Sukla was apparently on a
stable course showing very little changes, at least outwardly. This again,
encouraged me to indulge in wishful thinking that the worst was more or less
over and we had almost contained the onslaught of Alzheimer’s.I felt that
nothing more serious would confront us.

37. As we stepped into the next millennium I realised one morning that Sukla was
no longer able to put her signature down correctly. As we maintained joint
accounts it did not matter then. But I realised, rather late, that if I leave before
her, she would not be able to open a pension account, issue cheques or execute
a power of Attorney for someone else to do on her behalf. In spite of extensive
legal consultation, I have yet to find a satisfactory solution to this problem,
though our children have repeatedly assured me not to worry that far into the
future. However, I must emphasize this very important aspect must be taken
care of, immediately on diagnosis of DAT and not left for a later date when it
would be too late.

38. Around this time in early 2000, through a colleague I was introduced to a
general practitioner, who asked me if Sukla had reached a particular stage for
the disease, using a term I cannot recall now. If not, he informed me, then
through surgical intervention further deterioration of her brain could be halted.
This jolted me since so far I had known that Alzheimer’s was incurable. Our
neurologist was out of the country. The good doctor referred me to his friend,
a reputed neurologist for immediate consultation, which I did with a great
sense of expectation that perhaps, in the meantime, there had been some
radical breakthrough in the treatment of Alzheimer’s. I was however
disappointed. The neurologist after going through the test report and checking
Sukla confirmed that she was suffering from Alzheimer’s and that there was
 no cure for it. He was not prepared to guess at what state Sukla would be after
5 years i.e. around 2005 beyond which I thought I might not be around. When
I enquired if in the near future there was any possibility of replenishing the
destroyed neurons, he thought it would tantamount to granting immortality to
human beings. In a lighter vein he added, that the only medicine for
immortality was Amrit, which the gods had recovered from the depths of the
ocean and while being pursued by the Asuras, the gods had spilled a few
drops from the Amrit Kumbh at Sangam, Allahabad, where even today
millions take a dip on auspicious occasions for a touch of immortality. Jokes
apart, this again emphasized the feeling of inevitability regarding Alzheimer’s
disease as it existed then. Now of course with vigorous research on stem cell,
some breakthrough might be possible. But by then, it would be too late for
Sukla.

39. Right about the same time, I was advised by an experienced general physician
to consult a good psychiatrist, who might be able to give better advice about
Sukla’s slowly increasing symptoms of behavioural aberrations. I consulted a
senior doctor in the field, the head of a mental hospital. He spent almost an
hour talking to Sukla. I had introduced the doctor as a new neighbour who had
dropped in on a courtesy call. Sukla maintained a pleasant and communicative
disposition right through while talking to the doctor. At the end the doctor felt
that he was not in a position to prescribe any medicine for Sukla. He however,
referred me to his homeopathic associate who had done some good work for
Alzheimer’s patients. With renewed expectation, we visited the homeopathic
doctor, collected the prescribed medicine from different outlets at Esplande,
Burra Bazar and Dalhousie Square. A lady visited us thrice a week to counsel
her. I had introduced the lady as a friend of my younger sister’s, staying alone
in Calcutta. After a few weeks we discontinued the counselling as quite
clearly, the lady was making no headway. I however continued with parallel
homeopathic treatment for a good three years till an explosive deterioration of
Sukla’s condition in mid 2003 overtook our previous routine. And during the
fire fighting, the parallel homeopathic treatment was discontinued. I later
realised that a logic-based expert counselling would have no effect on Sukla
or any other patient suffering from Alzheimers as the patient retained no
memory to reason for herself and derive any benefit.
Over a period of time and after many mistakes, I leant that the best
counselling for an Alzheimer’s patient was to agree with the patient however
absurd it might be and then use your ingenuity somehow to direct the patient’s
focus well enough to ensure that the person would forget whatever he or she
had wanted to do. Almost like pacifying a child’s tantrum! More on this as we
go along.
40. Summing up this early stage, I would like to highlight the following lessons:
i. Ensure an invisible cordon to protect the patient from any further
humiliation due to misunderstanding.
ii. We should make sure that the patient is not lonely and she should
be made to feel that she is belongs to the mainstream of the family.
 But we must watch out for the patient’s personal safety. No solo
activity in the kitchen or steping out of the house unescorted. The
patient should be exposed to familiar environment, people and
activities so that his or her brain continues to receive stimulation in
whatever degree possible.
iii. We should not try to maintain the cognitive prowess of the patient
by correcting his or her lapses as that would destroy the patient’s
self-esteem and confidence and hasten the process of deterioration.
iv. One must not act on the assumption that all is well with the patient
and must consult the doctor periodically, even if there is no
significant change in the patient’s condition.
v. Immediately after the diagnosis of Alzheimer’s disease it is
imperative that all financial matters concerning the patient, present
and future are taken care of through the appropriate legal process
and in the best interest of the patient and the family before it is too
late.
vi. Lastly, the family carer and the family members must accept from
Day 1 after the diagnosis that the very core of the patient’s
existence is being destroyed relentlessly, by the onslaught of
Alzheimer’s Disease and as yet the available medicines can neither
reverse nor halt the process. It can only delay the end and till then
one must make all efforts to maintain the quality of life as best and
as long as possible.

MODERATELY SEVERE STAGE (2001-July 2003)

(Build up for the Final Assault)

41. The year 2001 brought nothing significantly different except that Sukla’s
behavioural discrepancy appeared to be slightly more pronounced. However,
around this time I felt I should get some guidance in taking care of Sukla, and
I should have some information regarding the availability of trained
attendants, should the necessity arise in future. Advised by our neurologist, I
rang up the office of the Calcutta chapter of the Alzheimer and Related
Disorder Society of India (ARDSI). Next moment I was speaking to Ms.
Shefali Choudhury. I did not realise that I was talking to an amazing person, a
founder member of the ARDSI, Calcutta, which had started in 1999 and
functioned till 2007, in her own house in Clark Street, but also at well past 80
years of age this grand old lady was taking care of her 61 year old daughter,
struck with Alzheimer’s since 1991. It’s indeed a rare example of self
sacrifice and triumph of the human spirit in turning one’s very grave personal
tragedy into a spring board for starting, housing and helping the growth of an
organization to combat Alzheimer’s disease for the community at large.
The kind lady patiently gave me the number of Mrs. Nilanjan Moulik, who
stayed in Salt Lake itself, for any guidance in care giving of Alzheimer’s
patients. Thus I came into contact with another remarkable person, dynamic
and totally dedicated, who, as the Honorary Secretary of the ARDSI Calcutta
 Chapter has been one of the main sustaining forces in bringing up the
newborn Calcutta Chapter to whatever stage it reached so far. We met
Nilanjana one evening at her residence in Salt Lake and I was at once struck
by her warmth and her commitment. Professionally qualified, and having been
associated with Dementia Care Unit in USA for several years, Nilanjana , in
addition to shouldering the responsibility of Secretary ARDSI, was reaching
out to patients and to their care-givers, even visiting their homes for giving
them the much needed guidance and moral support. And all this, while
running her home and bringing up very young children, with her husband , an
IT entrepreneur away on professional visits quite often. Our association
continued to remain very rewarding and a source of strength for me through
the very difficult days of Sukla’s treatment?

42. By the year 2001, Sukla stepped into the 7th year of the deadly disease. I now
know that Alzheimer’s patients normally end up between the 7th and 10th year
sometimes after a spell of acute behavioural disorder. But at that stage I knew
very little about the road map of the residual life of an Alzheimer’s patient and
continued to think that the future could not be very different. Throughout
2001 and till early 2002, we travelled extensively to Burdwan, Durgapur,
Kharagpur, Midnapur, a couple of times to Delhi and several times to
Bhuvaneshwar. She was still able to go to the toilet alone, return unaided and
interact with fellow passengers though in a restrained manner. But by the
second half of 2001, a new symptom surfaced. Once or twice a month for a
short duration of a few minutes, Sukla suffered from emotional instability.
The duration, intensity and frequency of such instability were gradually to
increase to about an hour or so, almost every day, till it reached a devastating
spell in a couple of years.

43. During this period of emotional instability, Sukla appeared to suffer from
delusions, when she regarded me as a stranger; and sometimes from
hallucinations, when she fought against imaginary persons or difficulties.
From her agitated behaviour and from what she said, it appeared that, with her
declining mental faculties, some insecurity-driven, adverse thought process
regarding food, shelter, money and even life, raided her mind. Further, the
persisting frustration and anger, triggered by the constant reminder of what
she had been, and what she was now, as also the terrible feeling of reality
slipping out of her reach, I believe, made heavy inroads into her mind causing
intense emotional instability, sometimes bordering on violence, which
compromised the safety of the patient and the care giver as well.

44. During her state of delusion, Sukla treated me as a total stranger, who had
barged into her house to evict her. Sometimes quite patiently she would try to
convince me that the house was hers and I had no business to be around and I
should get out immediately. At a later stage, by mid 2002, she would turn
aggressive and try to push me out. Initially, I quietly moved to the ground
floor to be out of sight. But soon she would search me out, turn abusive and
 sometimes violently throw me out of the house. I discussed this with
Nilanjana and she advised me to go out of sight , if need be, even outside the
house and return only when Sukla returned to normalcy. So during this period
of her delusion, I used to move to a friend’s house and return only later when
Lata informed me that Sukla’s agitational spell had subsided. This ‘out-of-
sight’ therapy worked reasonably well. Once she came out of her agitational
spell, Sukla did not remember anything at all, and behaved in a perfectly
normal manner. At other times she would inform me that we had no money
and to compound this she would also insist that there was no food in the house
and we might have to starve. Sometimes, visitors, close relations or friends
coming to our house triggered her delusion. She felt as if strangers had walked
in to our house, to finish all the food and quite embarrassingly, she told them
as much. Most regular visitors had been forewarned, yet some
misunderstandings cropped up now and then.

45. Early in the morning when Sukla had just woken up, she would ask for her
mother over and over again. For a while she would behave like a helpless
child missing her mother. Initially, I tried to explain to her that her mother had
expired long ago, and that every one had to leave this world after growing old
and that if all our ancestors continued to live indefinitely, the house would be
full of old people with no space to even move about. For a while she would
look at me showing no signs of agreement and then she would call for her
mother again. After a while the spell would be broken and Sukla would be so
convincingly normal that I would be led to believe that perhaps she had
understood the eternal truth, but actually she had not. It took me sometime to
understand that immediately after the emotional instability, she had absolutely
no recall of the same.

46. We visited Delhi to be with our son and daughter-in-law, Joy and Shivani
twice during the year 2001, once in February and the next in December,
spilling over to 2002. Both times we also made a trip to Dehra Dun, where our
elder son-in-law and daughter stayed. The first visit was absolutely normal.
The second visit in the end of 2001 was also going smoothly. Sukla behaved
almost normally at home and outside. In fact during this period we even
attended a sort of reunion lunch, with over a dozen of my retired army
colleagues and their families, who had settled in Delhi. Suklahad known them
all and now appeared to recognise them too, perhaps, based on her earlier
memory which had not yet been destroyed yet. She joined in the conversation,
though in a restrained manner, which was quite unlike her earlier self. When
some of her friends, who did not know about Sukla’s ailment commented on
her change, I had to take them aside and explain.

47. Only once during our month-long stay in Delhi, Sukla suffered from
emotional instability. One night at around 10 pm after dinner as we moved
towards our bedroom to retire, Sukla halted at the door and refused to go in.
As I pressed for the reason she blurted that she would not sleep on the bed
 where her dear friend ‘Urmil’ had died. Now this was unexpected. Urmil, wife
of our close friend, had died in a Delhi hospital in the early nineties that is 7-8
years earlier. Sukla was shocked when she heard the news in Calcutta. Now
after so many years, in her state of delusion, she insisted that I was forcing her
to sleep on the same bed where her friend had died. If I had left it at that,
perhaps after a while she would have returned to normalcy. But as I tried to
explain to her that what she thought was absolutely absurd, it aggravated her
mood further. She turned aggressive, walked up to me and hit me. She had
been losing her temper without any apparent reason quite often, now. She had
tried to push me out of the house several times in Calcutta, but so far, she had
never hit me. Joy and Shivani were understandably disturbed. I realised later,
in fact much later, that perhaps the unfamiliar multicoloured chequered
bedcover which was spread on the bed to replace the earlier cream coloured
one, must have triggered off some emotional disruption in her, bringing into
fusion in a strange sort of way, two events separated by a number of years. In
her delusion I was the villain who had killed her dear friend Urmil and now,
was trying to harm her as well. Driven by insecurity therefore, she hit out at
me.
In hind sight, the lesson learnt was, that any radical change in the
surroundings might trigger off such as adverse mood swing in an Alzheimer’s
patient. The best way to handle this was to agree with her, withdraw from the
room, replace the offending bedcover with unobtrusive one of a light colour,
and then return to the bedroom after a while. By that time she would have no
recall of the immediate past i.e. the incident of the coloured bed cover.

48. Gradually, our travelling by train started posting problems. While returning
from Delhi by train in early 2002, I escorted her to the toilet and left her there,
with the advice, that she should not cross the inter-carriage steel bridge where
the rail track made a loud noise, because this would be just the opposite way
from her berth. In the earlier journeys she had always returned to her berth on
her own. This time I just wanted to be cautious. After a while, nudged by a
vague apprehension, I went back, waited for the toilet door to open, to escort
her back to her berth. But when the door opened, to my horror, someone else
came out. I rushed through the train, crossing one steel bridge after another,
and luckily found her in the fifth or sixth coach from ours, desperately looking
for me. We did travel by train several times after this, but I always made sure
that I waited outside the toilet and escorted her back. I repeated the mistake of
cautioning her not to do certain things, but quite obediently Sukla’s brain
latched on to the keywords, in this case ‘the interconnecting steel bridge’ and
‘track-noise’. After many such mistakes another lesson learnt was that one
should not mention anything she was not required to do. Instead one had to
tell her what she should do, in this case - to return to the corridor where the
‘red chain was hanging overhead and look for me’.

49. As we stepped into 2003, my work at Bhuvaneshwar was tapering off, but I
still had to go 2 or 3 times. The next time we travelled by the Falaknuma
 Express I stood outside the toilet to escort her back. The train would shortly
be reaching Bhuvaneshwar. Sukla tried to unlatch the door from the inside but
just could not. This was the first time it had happened. But then, there would
always be something the first time! And one is in trouble if one fails to
anticipate it. I went on frantically giving her instructions from the outside. It
did not work. Instead, it confused her even more as in her desperation she
handled the latch the wrong way. Meanwhile the train had pulled into the
platform. I could not just leave her to find a railway staff and so, purposefully
I looked up at the alarm chain for stopping the train in an emergency. At this
moment, in one of those rare combinations of confused and random handling
of the latch, suddenly to my great relief, the toilet door flung open and there
she stood, quite happy with her achievement, while I was profusely sweating.
Having no recall of her immediate past Sukla stood relaxed, totally oblivious
of the emergency she had created and just managed to scrape through. She no
longer had any understanding of the implications of what had happened. We
did travel by train only a couple of times thereafter, when as a precaution, I
would stand outside the toilet keeping its door about half an inch open,
inserting my finger in between, so that she could not shut the door and latch
up, explaining to fellow passengers that Sukla was unwell and might need my
help. We continued to travel this way till the end of March 2002, when I
found her unable to handle the water tap in the toilet, to wash up, and I had to
step in. That finally ended our otherwise thoroughly enjoyable travel together!
Coincidentally my commitment at Bhuvaneshwar was also over and I did not
have to leave her alone at home anymore.

50. Throughout the year 2002, the frequency, duration and intensity of Sukla’s
emotional instability steadily increased from a few minutes every fortnight or
so, to an hour or two, once or twice a week by the end of 2002. I retired
finally on the 31st of March 2002. On the farewell night at Nicco Park, Sukla
handled herself very well in the large crowd, though she did not quite
understand why gifts were being given to her. The next month, in April 2002,
we had joint birthday celebrations for Sukla and our one year old twin
grandsons – a big ‘do’ in a nearby venue. Again Sukla, helped by our son Joy,
handled herself very well, blowing the candles and cutting the cake. I found
that when something different engaged her attention, she did not suffer from
adverse mood swings. I now had more time to attend to Sukla. I observed that
during her state of delusion, in a strange way, Sukla suffered from insecurity.
Of all the members in her family, Sukla loved her mother and her younger
brother the most. Both had expired way back in 1981 and 1982 due too certain
ailments. Sukla had looked after them as best as she could, at home and in the
hospital, till they had breathed their last. The twenty year old wound surfaced
during her emotional instability. During the spell of delusion, Sukla thought I
was the stranger in the house who had killed her mother and her younger
brother and turned abusive and aggressive, sometime bordering on violence.
That is when I resorted to the ‘out of sight’ therapy to tide over.
51. The incidence of Sukla’s emotional instability continued to increase and by
early 2003, it became a couple of hour’s ordeal almost every day. Assisted by
Lata, our whole time help, I attended to Sukla as best as I could, since our
children were settled quite far off, the nearest one being in Delhi. Although I
was very much aware of Sukla’s ailment, her aggressive reaction towards me,
during her spells of delusion, remained inexplicable and was beginning to be
stressful. Such stress piling up cumulatively, day after day, also dented my
confidence. Sukla was also going through a very stressful period of agitation.
But over a period I learnt that such stress left no cumulative effect on her, as
mercifully she had no recall of her immediate past and she remembered
nothing at all of her ‘agitation period’ or any other event in the recent past.

Let me explain this with an analogy. Imagine that our memory bank is an
auditorium where memories from our earliest days to the present are seated, or
rather, stored. As the neurons in the patient’s brain are gradually destroyed due to
the onslaught of Alzheimer’s disease the capacity of the memory bank or the
auditorium shrinks, and memories are thrown out or erased, generally on a ‘last in
first out’ (LIFO) basis. Therefore, the memory bank or the auditorium is always in
a state of house-full. When fresh events occur, it does not get recorded, as the
memory of the event enters the auditorium, hovers for a few moments for a seat,
and finding none due to ‘house-full’, goes out through the ‘Exit’. The patient,
depending on the stage of the ailment can respond coherently to the ongoing
conversation or event, based on instantaneous comprehension (when the memory
hovers for a seat) and the still existing memory bank of the past, though
immediately thereafter, the patient would have no recall of the immediate past.
Thus outwardly the patient would continue to appear normal, though the victim
might well be into the spell of Alzheimer’s for sometime. Of course, there could
be exceptions to the general rule of ‘last in first out’ (LIFO). Some memories
having a strong association, such as overwhelming happiness or intense trauma
will linger for a much longer period, breaking the LIFO rule. As the disease
advances, in addition to not recording fresh events, the existing memory gets
destroyed on the LIFO basis. Thus we find in Alzheimer’s patients, and even in
people having age-related forgetfulness, that the person forgets later events but
continues to remember the earlier days. I realised, much later, that the memory of
an Alzheimer’s patient recedes chronologically backwards, as was evident from
Sukla’s choice of music, language etc. Now in early 2003, in her moderately
severe stage of Alzheimer’s Sukla, depending on her early memory and her
instantaneous reaction to a situation, could somehow ,in a limited manner,
respond to the present conversation and events, even though , she would not
remember it the next moment.

52. Coming back to Sukla’s ever increasing adverse mood swings resulting in
emotional instability and behavioural disorders, it was now a daily routine, of
about an hour each, in the morning and the evening. In spite of knowing that
whatever Sukla said or did, during the period of her instability, was due to the
effect of Alzheimer, such understanding particularly for someone close to her,
 such as her spouse, could never be adequate to fully neutralise the stress from
being subjected to sustained, aggressive accusations. The fact that such
accusations held no basis did help, up to a point, but not quite. The fact that, in
a while, Sukla turned normal confused matters further. This rapid changeover
from near normalcy to an intensely adverse mood swing of a dear one, robs
the caregiver of his ability to stay rational, objective and impersonal enough to
ignore the stress altogether, and I felt the pressure of the cumulative effect. I
did not know how long this stage would persist or to what extent it would get
aggravated; nor could I get a road map for the subsequent stages of
Alzheimer’s patients. But I did realise that care-giving of an Alzheimer’s
patient would be a long and difficult journey, through mostly uncharted course
and that I must find some ways to handle this cumulative stress for my own
emotional survival.

53. During the year 2002 and well into 2003, Sukla’s agitational spell continued
to grow more severe for five to seven hours a day, almost everyday.
Throughout her remaining wakeful hours, Sukla would wander around all
over the house, driven by an acute restlessness. As I struggled to cope, out of
sheer necessity and through trial and error, I found myself using a few home-
grown measures. Call them therapies if you like, but at least I got some relief!
Again the basic approach was to somehow divert her focus, just as one would
do to a child in tantrum, to defer the approaching mood swing and emotional
outburst, inflicting a stressful impact on me and intense physical suffering for
Sukla , even if she was unable to remember it. Let me explain these diversion
therapies.

(a) Exposure to familiar people and environment:

Right from 1996 onwards, as mentioned, earlier, I had been taking Sukla
out for walks or visits to expose her to known people or familiar
surroundings, believing it would stimulate her brain and retard rate of
decay. It was a continuing process. She liked these exposures, even if she
was unable to recollect a name, she would make the extra effort to conceal
it and made the person feel she knew him or her very well. She was
responsive and looked forward to such outings. Up to a time it worked.
But gradually, over these 5-7 years, her interest in interacting with people
known to her from the not too distant past, significantly waned. I realised
much later that Sukla’s memory was receding on LIFO basis and the
memory of people known to her in recent years was getting erased. Sukla
started living in her earlier days and later in her childhood indeed!
She had spent her childhood to early college days, i.e. her most
formative and impressionable years, in Krishnanagar. Naturally, she had
been sharing with me, as I had with her, the highlights of her earlier days
of growing up – the most hilarious, exciting or thrilling moments, but
never anything sad or depressing, as Sukla was always ready to forget
anything reminding her of unhappy moments. She would recount the most
exciting but difficult hours she had spent when she had to sit motionless,
dressed as Saraswati Devi , the goddess of learning, for quite a while with
a live swan, its legs tied and placed within pecking distance , during the
puja festival in her school. Then there was the embarrassing moment when
as a chorus singer in Class VIII, during the cultural function of the school,
she was awarded the best singer medal, by the Hero’s Club, a local outfit
of boys and the Chief Guest remarked that though he was baffled as to
how the selection could be made out of a dozen girls, he was very happy
to hand over the medal to the winner. Sukla was not there to receive the
medal, having run away out of overwhelming embarrassment, fromthe
backstage. She failed to turn up in the school for the next three days. She
spoke of how during the Jagadhatri Puja festival when the largest deity of
Krishnanagar was taken for immersion, the ground reverberated. And also
the clash between rival groups, which left her immediate elder brother,
Shyamal, with a gashing wound in his forehead. I found Sukla responding
positively to these and many such memories of her earlier life. So
whenever, there was a sign of ensuing adverse mood swing, I switched to
talking about memorable events of her school days or better still, I would
get one of her siblings, who had been briefed earlier, to talk to Sukla on
the phone reliving those wonderful childhood days. Shyamal was always
very effective in bringing out and sharing those nostalgic days with her.
He, being an amateur artist, presented her with several sketches, capturing
some of the memorable moments at Krishnanagar. One such sketch
showed their mother blessing them in a particular manner, from the first
floor balcony, when the four siblings left for school everyday – one of
Sukla’s very strong and pleasant childhood recollections. Such
recollections worked reasonably well. Over time I learnt to be effective;
the recollections I exposed her to had to match her receding memory.
I also continued to take her for walks in the evening, and visited
the market. But she no longer interacted pleasantly with known people. In
fact she talked very little. These people had already been erased out of her
memory. I still continued to take her for a brisk walk for 2-3 kms every
evening. This appeared to provide timely diversion for deferring her
adverse mood swings, apart from the much needed physical exercise.
(b) Identity reassurance: Right from the year 2000, Sukla
sometimes used to look around helplessly as if she did not know who she
was or what she was doing there. Scanning through our family album of
her early days and going down memory lane did help till around 2001.
Thereafter she did not have the patience or focus to go through the album
pages. So over a period of time we selected her favourite photographs – of
momentous occasions, thrilling experiences, special events, with children
at various stages – enlarged and displayed on the mantle shelf and in a
showcase facing her favourite chair. This helped very well in reducing
Sukla’s occasional feeling of helplessness. By 2000 and thereafter these
photos proved much more useful. During her walking around the house,
Sukla sometimes showed increasing restlessness, which was generally a
forerunner of impending emotional outburst. At that stage, with a little
prodding, or sometimes on her own, Sukla stood riveted in front of the
showcase, totally absorbed and she would respond to my prompting
regarding a particular photograph. As we moved from one photograph to
another interesting one, Sukla would be at ease as if the approach of
adverse mood swing had receded and had been replaced by pleasant
curiosity. She would ask a question or two and just keep watching and
smiling at a photograph. This worked most of the time, but as the disease
progressed, its success rate reduced. What actually started as an aid for her
identity reassurance in 2000, continued as a form of diversion for
deferring Sukla’s emotional instability for quite sometime, even around
the year 2004, though with diminishing returns.
(c) Music therapy: Sukla was very fond of music, dance, theatre
and cinema and almost all cultural activities. Throughout the day, while
doing her chores or even reading or writing, she listened to music or sang
for hours. Rabindra Sangeet was her prime attraction right from her
childhood. In later years she even became equally fond of Hindi film
music created by SD Burman, RD Burman, Salil Chowdhury and other
such greats in the fifties and the sixties. Finally, as our teenaged children
took over the music system, she also grew fond of western music – some
romantic, some contemporary pop. Now in 2002, throughout her wakeful
hours, we played selected music for her, slow and rhythmic during the
morning hours, say Tagore’s puja songs followed by her favourite Hindi
and western music. This perceptibly brought down the duration and the
intensity of her restlessness and consequently the frequency of her
emotional outbursts as well. Apart from the melody and the lyrics,
enveloping her mind, the songs appeared to bring back fond memories of
the time, the place, the ambience and the people of the time, when this
particular song dominated her music world. She wishfully looked as if
remembering and savouring the Simla days, or Delhi, Agra or
Secundrabad. Not only would she sing along, but sometimes the effect
was so compelling that she would shuffle around the floor, dancing to the
tune. Music provided her with a pleasant diversion and sometimes
physical exercise as well. As the intensity of the adverse mood swings
increased, I found the music therapy to be quite effective in providing
relief. I did not have to introduce the therapy. It was already there and with
time I just learnt to make the right selection of songs. However, a word of
caution. Sometimes some songs ceased to have any effect on her and
appeared to aggravate her mood. Over a period, a pattern emerged
confirming the phenomenon of her receding memory. By 2001 she was no
longer fond of western music and appeared to settle down well with Hindi
or Bengali music and thereafter she responded best to Tagore’s songs
only. Of course, she continued to like a few melodies, which had been her
favourites, cutting across the barriers of language and time. Right up to
mid 2004, Sukla responded to music in diminishing degree. The last one
was a cassette on Tagore’s dance drama ‘Chitrangada’. It was not
unexpected as she had told me immediately after our marriage about her
earliest participation in a cultural function, at the age of 6 or 7 years. She
had a role in the dance drama ‘Chitrangada’ organised for children by her
much older cousins from Santiniketan. Having been together for nearly
half a century, I had the advantage of selecting the right music most of the
time.
(d) Instantaneous diversion: Memories of funny and hilarious incidents,
sights or anecdotes, the mention of which made Sukla burst into laughter,
were found quite effective in diverting her from impending behavioural
aberrations. Scanning through the life we had shared together, I could
gather quite a few such funny incidents. Also, even at this time, Sukla was
ready to laugh whenever she heard or saw anything funny. I found the
mention of a funny incident, made at appropriate times, brought good
results to tide over critical moments. Perhaps some examples of these may
make it clear.
One afternoon, after an intense spell of agitation, I had put Sukla to
sleep and moved to another room to stretch myself. As I was about to fall
asleep, Sukla rushed into the room and told me she had no alternative but
to commit suicide immediately. Any attempt to pacify her, by counselling
would have made little difference, as she was no longer in a position to
understand any reasoning. In fact any disagreement with her thinking used
to trigger more adverse reaction. Instead, I told her in a supportive and
helpful tone that her proposed suicide would be very easily arranged as we
had a much better overhead water tank, Tank No. 3, close to our house,
than the makeshift one used by Dharmendra in the film Sholay. This in a
flash brought into her mind the hilarious scene from the film and she burst
into laughter. The cloud of adverse mood swing passed and she walked
off, totally forgetting what she had come for. Ever since Sukla had seen
this film, Sholay, in the mid-seventies, she had never stopped laughing
every time she remembered it. She would even mimic the funny dialogues
of the scene.
On another occasion when I was resting one afternoon after putting
Sukla to sleep in the next room, she suddenly appeared at the door, flailing
her arms wildly and declaring that she was already dead. This was a
forerunner of another spell of disturbance. Something had to be done to
divert her mind. So, lying flat on the bed, while agreeing to what she had
said, I told her very enthusiastically that this was a miracle indeed! The
one who was alive had been lying flat on the bed and the one who was
dead, was standing at the door, flapping her arms. Somehow she found
this very funny and she burst into laughter and walked away.

Even when Sukla was not in the agitational mood, she sometimes suffered
from a spell of depression seemingly resulting from a feeling of loneliness,
helplessness or perhaps worthlessness. In that stage she would talk to me
quite normally, that she would like to commit suicide and since the
balcony and the windows had been grilled up, she could always go to the
the roof and jump off. She felt it could be quite easy to do that. Though we
always kept the door to the roof locked, her almost conspiratorial
suggestion was very unsettling. But I laughingly told her that she could
always do that but nothing much would happen to her. Falling on the soft
grassy patch, she might just break only a leg and limp through the rest of
her life like this and I demonstrated it. As I exaggeratedly limped a few
steps, she burst out laughing, probably wondering what had happened to
me, as, by that time, she would have forgotten why I was limping!

The cloud had passed and her mind had unhinged from the thought
of suicide. She was ready to smile at life again given the slightest chance.
Doctors writing her prescription had more than once, started thus: ‘A very
cheerful patient suffering from….’ Her readily cheerful disposition was a
great help for a breakthrough.

At the dining table, Sukla maintained remarkable dexterity even in

segregating fish bones and refused any help till around late 2002.
Sometimes a fish bone would get stuck in her throat. She would move to
the wash basin and somehow get rid of the bone. This had been her routine
even before her ailment. Once, however, at dinner in late 2002, the
stubborn fishbone refused to get dislodged even after repeated efforts. It
was past nine and we were just the two of us at the table. After a few more
attempts to extract the fish bone she looked at my anxious face and quite
seriously suggested that I should get hold of a fork or better still, a kitchen
knife and puncture her throat to get the fishbone out. Years earlier she had
read about the tragic death of our first Indian Air Force chief on a tour to
Japan, having choked on a piece of meat how his life could have been
saved if someone at the dinner table could quickly have punctured his
trachea with a fork! This solution must have flashed through her mind at
that very moment and she wanted me to do it.

I was already very anxious and now with this suggestion, I felt
quite nervous, but quickly steadied myself knowing that there was no
emergency, since it was only the food pipe. I searched for a diversion to
take her mind off the kitchen knife or fork. With a still nervous smile, I
told her it was no doubt a good idea, but once her throat was punctured,
she would only sing like me and I started singing tunelessly. This was our
private joke. Even at my best, I was a bad singer. Every time I tried, it was
a source of great merriment for her. Sukla would burst into laughter, just
as she did now listening to my deliberately distorted voice. Also, she was
quite proud of her own singing and would hate to spoil it. These two
combined to make her drop the idea of puncturing the food pipe. As she
laughed, I thought of other ways of getting rid of the fish bone stuck in her
throat. I made her swallow a few tightly packed balls of rice and
mercifully the fishbone was dislodged! A lesson was learnt. We were
cautious in future in the selection of fish and deboning it without changing
its shape before serving it to her.
 Having known her closely for nearly half a century it was possible
for me to think of some such measures to divert her thought process on
quite a few occasions.

54. By the end of 2002, apart form a significant increase of frequency, duration
and intensity of emotional instability, Sukla developed a tendency to wander
off. Maybe, she felt claustrophobic. She could not unlock our front door. But
whenever she found it unlocked or open, she would just walk off. This was a
safety hazard as traffic on the road in front of our house, was quite dense. In
spite of our precaution, she had gone off a few times, when one of us had had
to follow her and get her back. It was a tricky operation. If you ran after her to
catch up, she would start running and she might have stumbled or had an
accident. Fortunately she hated negotiating traffic and usually turned into one
of the side roads of the block which had very little traffic and carried on. One
of us had to follow her unhurriedly and stop whenever she stopped. Soon she
would find it quite interesting and expect you to follow her. After a while
when she was tired she would be happy to be escorted back home. However,
we took a double precaution, by locking the front gate, in addition to the front
door. At home also she was restless for long durations and moved all over,
upstairs and downstairs, for several hours a day.

55. I had been taking her out for long walks for 30-40 minutes every evening.
Sometimes we visited the market place. On one of those occasions, as I was
buying something in a crowded shop, I suddenly looked back and found Sukla
missing. I combed through the whole market for 5-7 minutes and then rushed
around the outskirts of the market, but could not find her. She had just
wandered off. By now it was totally dark. I was in panic and physically
exhausted. I decided to return home and send Lata to search for Sukla inside
the block, while I continued to check the market place. Before leaving, I stood
at the well-lit junction of the approach roads to the market, and called out her
name several times. All of a sudden, I found Sukla coming from a dimly lit
lane, trudging along towards the well-lit junction, totally helpless and lost,
looking for a familiar face. As she heard me calling, she turned and her face lit
up half crying. It was a narrow escape. She had forgotten that she had come
with me and wandered off into the dimly lit lane. Finding increasing darkness
ahead, as a normal tendency, mercifully, she turned towards more light and
more people. Another important lesson was learnt. Earlier we had been
keeping her identity and her address in her handbag but by 2002 she was not
carrying one. She was not very coherent in giving her name and address. So
this was an uncovered security gap. We tried a wrist band with the name and
address on it but she soon tore it off. Putting an identity patch on the blouse at
her right shoulder was also tried. Finally I settled down to holding her hand
tightly all the time while out shopping or out for a walk.

56. the last few days of the year 2002 saw her still fully mobile, capable of
handling her basic requirements, bathing, attending to her toilet, dressing up
 and eating on her own with very little help. Sometimes in early 2003 Sukla
developed bladder incontinence. It started with wetting her bed once in a
while. We arranged a full length rubber cloth which solved the problem.
Gradually the bladder incontinence stepped into her wakeful hours and later
even when she was on her evening walk. Adult huggies solved the problem to
some extent. Soon by mid 2003, Sukla found it difficult to locate the toilet.
We put a sign on the toilet doors and kept the toilet lights on, at night. But it
appeared that Sukla needed more attention and guidance. At regular intervals
we suggested to her that she should visit the toilet and sometimes escorted her
with good results but this did not always work. Gradually the workload on our
domestic front increased.

57. During the middle of 2002, our daughter Indrani and her family moved to
Calcutta. Our son-in-law had come as the head of a local educational
institution. It was a very happy spell for us. Initially they stayed quite far off,
but in early 2003 they moved close to our home. By now Sukla was having
emotional instability almost everyday for duration of 2-3 hours a day. In our
enthusiasm to expose Sukla to her familiar environment, in early 2003, we
decided to go out on a picnic along with a dozen known families of our Block,
somewhere in the outskirts of Calcutta. Our elder daughter Indrani, came
along with us, otherwise I could not have taken the risk of taking Sukla for an
outing lasting over 8 hours. Indrani was with her mother all the time and at
regular intervals escorted Sukla to the toilet, just in case. The day went off
very well, as it was a different type of diversion for Sukla. The outdoors and
being with a group of familiar people worked wonders for her. This coupled
with her effort to maintain her presence as an active participant of the
gathering perhaps, helped her to stay on the rail. Throughout the day, there
was no sign of her adverse mood swing. It was a risky venture, but well worth
it. She was very happy laughing away with least provocation in the company
of friends. She even participated in the discussion, not really contributing
anything new but mostly agreeing to, or repeating what was said last. Her
friends, in the know about her ailment and her limitations encouraged her.
Overall, it was a day well spent and also Sukla’s last recreational visit
outdoors.
Now that Indrani had shifted to a place about half a kilometre or so from
our house, every evening, we used to walk to their house around 5.30
p.m., as soon as they returned from school. We spent about 10-15 minutes
at their place over a cup of tea and then walked back home. Both Indrani
and Sukla looked forward to this little get-together rather intensely. For
Sukla, this evening walk apart from being a pleasant trip, served also as an
effective diversion for deferring her impending mood swing. Sometimes
around 5.30pm even if she had already started abusing or hitting someone
nearby, I would just hold her hand firmly and walk out briskly from the
house. Quite perceptibly, she would calm down, as we speeded up, as if
the energy she had gathered to sustain her emotional outburst was spent on
walking. Or, putting it in a slightly better way, the adrenalin secreted in
 her system to support the outburst, was gradually drained off, as we
speeded up our walk. She would speak a few words while walking, but
they were very normal, and far from being abusive.

58. Before I end recounting this part of Sukla’s ailment, I would like to mention
some other symptoms that surfaced during this period. Weighing around 73
kg. Sukla had always been overweight on her 158cm. frame. From early 2003,
when her restlessness increased and she walked around the house, several
hours a day, upstairs and downstairs, she started losing weight. For all of us it
was a welcome development. By mid 2003, she was down to 58 kg., looking
ever so trim and vibrant. Our house physician was very happy. But this
process of weight loss was to continue through 2003 and even after, in spite of
regular intake of calorie and protein rich food. It was inexplicable and
worrisome. I consulted doctors but could not find any remedy and almost
accepted it as a usual deterioration due to excessive physical stress.

59. From late 2002 onwards, Sukla’s English vocabulary gradually tapered off, which
I realised in hindsight when one day, in early 2003, I observed that Sukla was
happily conversing in Bengali for nearly and hour with a toddler who spoke only
Hindi and English. As an army wife, since 1956, she had developed this habit of
using English quite often, even at home. It was therefore strange that she had
stopped speaking in English, even when the toddler spoke in English during their
long chat. I did not realise this then, but much later, a pattern emerged. Her
memory was receding as it was getting destroyed on ‘Last in First out’ (LIFO)
basis. The implication was that her army life, when she had conversed fluently in
English, had been totally erased. Her indifferent response to western music also
confirmed this. But the most severe implication unfortunately was that I no longer
remained in her memory as a person, an army officer, to whom she got married in
way back in 1956. Simply speaking the memory of our married life had been
totally wiped out from her mind! Thankfully, I was unaware of this devastating
truth at that time.

60. Looking back during this moderately severe stage, while Alzheimer’s disease
built up for its final assault, Sukla went through increased emotional disorder. It
was an everyday affair more intense and of longer duration. The success rate of
my diversion therapies gradually diminished. I started feeling the emotional stress
building up and sometimes doubted if I could measure up to the challenge.
Additionally, Sukla’s growing restlessness along with her wandering tendency,
and the onset of bladder incontinence, increased the workload for us. Trained
attendants for patients suffering from Alzheimer’s were not available then.
Sukla’s reaction to strangers had, of late been unfavourable, as a part of her
behavioural disorder. So, we hesitated to get just any attendant without special
training in handling such patients. However, it was still manageable with the two
of us, our domestic help Lata, and I, available at home round the clock. At least I
hoped so, there being no other option in sight.
61. Summarising, Sukla, in addition to the symptoms discussed during the early stage,
developed a major one of emotional instability in this stage, It started infrequently
i.e. for a few moments of mild disorder once a fortnight to a month as a daily
feature when during her delusion she became abusive, somewhat violent and
treated me as a total stranger, a villain and even a murderer. With increased
frequency of such disorder, the cumulative stress on the caregiver mounted,
warranting improvisation of some home-grown measures such as exposure to
familiar environments, to childhood memories, to the family album, to favourite
music and to memories of hilarious moments to divert Sukla’s focus and delay
adverse mood swings, in a bid to provide some relief to the caregiver. Due to the
gradual destruction on ‘Last in First out’ (LIFO) basis, Sukla’s memory appeared
to recede and therefore, to be effective, the diversion technique had to be based on
her residual memory. At this stage, Sukla also developed bladder incontinence
and a tendency to wander out of the house, calling for an increased workload and
some precautionary steps to ensure her safety. The phenomenon of her massive
weight loss still remained somewhat inexplicable.

THE SEVERE STAGE (MID 2003-MID 2004)

(The Final Assault)

62. By mid 2003, with the successive stepping up of the dose of Exelon, Sukla
was now taking the maximum permissible dose of 6 mg. twice a day. All such
supportive medicines suffer from the law of diminishing returns on the face of
increasing onslaught of the disease and Exelon was no exception. So far, by gradually
increasing the dose it was possible to maintain a reasonably slow deterioration of her
ailment. But now, on maximum dose for sometime, it appeared as if we had already
reached saturation. The rate of decline of her faculties became more pronounced. Our
neurologist, after thorough scrutiny of her EEG and MRI had quite reluctantly
allowed her to take the maximum dose of Exelon, applicable in the Western world.
There was nothing further to it. I was at a dead end. As the days rolled by and Sukla’s
condition deteriorated, I felt helpless.

63. This was the stage when Mala, a relative of ours from Sukla’s side, got in
touch with me form Nagpur regarding a wonder drug as a remedy for Alzheimer’s.
Mala, married to Sukla’s first cousin had been a serious student with a Master’s
Degree in Mathematics and was now working towards a Ph.D. She was teaching in a
local college in Chhindwara, Madhya Pradesh, where during the mid eighties,
executing a project for the GEC, I had personally come to know the family. We had
been in touch since and Mala had been deeply concerned about Sukla’s ailment.
Around mid-July 2003, Mala, very enthusiastically informed me about an eminent
doctor, an MD (Medicine) of Nagpur who had developed almost a miracle package of
biochemical medicine for curing patients suffering form Alzheimer’s disease. Mala
herself had recently been suffering from a nerve ailment, which had kept her bed
ridden for sometime. She had been under treatment of this doctor, and within a few
months time he had cured her fully giving her almost a new life. This package of
medicine Mala informed me, had already cured some patients including the doctor’s
mother-in-law suffering from Alzheimer’s. She was excited about the medicine and
predicted that within 3-4 months I could undertake a much awaited visit to their place
in Nagpur along with her very dear ‘khukudi’ (Sukla) in almost normal condition. She
explained that although Sukla would not regain her lost memory or cognitive
prowess, this medicine would halt further deterioration of her condition and stop the
spells of behavioural disorder. After a little retraining and guidance she would be able
to perform routine activities to look after herself. In layman’s terms I gathered that
the medicine would correct the genetic aberration of her cells that cause Alzheimer’s
and halt further deterioration. For a family carer staring helplessly at the inevitable
end of his spouse, a dementia patient, after endless suffering and not knowing what
was yet to come, this information from Nagpur was much more than one could dream
of. Mala’s well-intentioned enthusiasm was infectious and, for the first time I started
expecting a light at the end of the tunnel! I even fantasized trips to places, we wished
to visit or revisit together, but had not made it. I discussed this line of treatment with
our daughters Indrani and Sravani and our son Joy and plunged into the scheme of
parallel treatment.

64.The first package of medicine known as cleanser and ‘facilitators’ containing

purified derivatives of salts and minerals, arrived from Nagpur by courier in late July
2003. Within a few days of starting this alternative treatment in parallel, Sukla’s
behaviour disorder appeared to increase, but I was assured by the doctor that within a
week or so, I would find some change in her towards the right direction.

65. Around the end of July 2003, one afternoon, as we reached the doctor’s chamber,
for a monthly general check up, Sukla, alighting from the car, just walked off in the
wrong direction, After some effort, when I could take her to the doctor’s chamber ,
our house physician, who was aware of Sukla undergoing the parallel treatment,
remarked aside that, for the first time, Sukla appeared to have lost all inhibition in
front of outsiders and hoped this aggravation was not due to the effect of the
alternative medicine. I was very keen to give this medicine a fair trial and quite
deliberately accepted it as a temporary deterioration before any improvement started.

66. About a week later on 31st July 2003, Sukla was down with acute food
poisoning and had to be hospitalized for a few days, where she had to be put on the
drip. This, I suspect, was due to my thoughtless indiscretion of giving Sukla her
favourite snack, an egg roll, brought from a particular shop, not realising that her
resistance to infection must have been lower than average. Fortunately both my
daughters were in Calcutta. Sravani, our younger daughter on a visit from the USA
stayed with her mother in the hospital for a few days. Apart from bedwetting and the
occasional abusive spell greeting the attendants or nurses, Sukla otherwise was alright
and did not have any sustained behavioural disorder. Lying in bed with a drip in the
cabin she did feel claustrophobic and wanted to wander off into the corridor, which
she did as soon as her drip was removed. She was very happy walking along, visiting
nurses’ stations and spontaneously singing Rabindra Sangit.. Rather than a gloomy
feeling, which hospitals in general, arouse in a patient, Sukla liked the place for a
change though she might not have realised that she was in a hospital. Strangely,
during her 3-4 day stay, Sukla did not suffer any serious behavioural disorder. Was it
due to my stopping the alternative medicine, or just a change of environment? I
would never know, but quite readily I hastened to believe the latter.

67. On her return from hospital we consulted the doctor at Nagpur. He advised us that
the break in continuity of the medicine had put the patient back to square one and
we would have to start the course afresh. On 3rd Aug 2003, we resumed the course
of alternative medicine with renewed vigour and expectations, dreaming of a new
lease of life for Sukla free of all suffering. But contrary to expectation the
duration and intensity of her emotional instability continued unabated and the
period of her restless wandering about the house, increased. I had been taking her
out for evening walks, which still seemed to pacify her, temporarily.

68. On the 9th of August, our younger daughter had to leave for the USA. In a few
days our elder daughter and her family would also leave for Dehra Dun, when I
would be left on my own. As usual, we visited their house every evening for a few
minutes. On our last visit around mid-August, Indrani had put on one of Sukla’s
favourite songs. She not only enjoyed the music but started singing and dancing to
the music. It was the last time she did so. It was very moving. Sukla continued to
enjoy it, totally oblivious of the fact that the next day Indrani would be leaving
Calcutta. Sukla had heard several times that they would be leaving soon. The
house was cluttered with packed luggage awaiting transportation and now, was
almost empty, as most of the luggage had been sent off. But Sukla could not take
in the reality. I realised later that based on her past, still existing residual memory,
she could react to the instantaneous present quite coherently. But she could not
recall anything of the recent past nor was she able to draw any conclusions from
what she observed around her. It was the same person who once displayed a
phenomenal memory and who used to be very quick on the uptake! Totally unable
to comprehend what was happening around, she quite happily sang and danced in
the now empty living room. Indrani had difficulty in controlling her tears. I also
turned the other way to hide mine.

69. By the end of 2003, the duration of her behavioural disorder increased
considerably, to 5-6 hours a day almost everyday, along with its intensity. She
was now restless throughout her wakeful hours. But she was still capable of
negotiating the stairs while moving upstairs and downstairs driven by some
internal turmoil. Without looking down she could cross the doors leading to the
balcony, negotiating the rainwater barrier at the door frame. Once she reached the
end of the free space, she turned around so fast that it would have impressed a
veteran drill sergeant. But this was dangerous too. In the process of whirling
around, she went off balance and had a couple of falls, thankfully without
breaking any bones.
70. So far, we had not thought of any special measure for her safety indoors, apart
from putting grills on the balconies and keeping the door to the roof and the front
door locked. But now gradually through Aug-Sep ’03, we streamlined the
furniture to give her a free run of the house. No major changes which might
present stark unfamiliarity, was made. We also removed all the easily accessible
decoration pieces, electrical plugs, loose wiring and masked up open sockets, at
least upto 6 inches from floor level, so that she did not hurt her toes while walking
around.

71. As we stepped into Sept 2003, the duration of Sukla’s behavioural disorder
increased further to about 7-8 hours a day, 4-5 hours before noon and 2-3 hours
after 5.30 or so in the evening. I had been in touch with the doctor in Nagpur 2-3
times a day, as Sukla’s condition continued to deteriorate instead of improving.
But the doctor repeatedly assured me and advised me strongly to go through the
whole course for a durable result. Having plunged into it and braved through
almost halfway I could not turn back now and I carried on, hoping against hope,
that some day soon the miracle will happen!

72. I was taking Sukla out for our evening walk from 4.30-5.30 pm everyday, even
after Indrani left Calcutta. On the 4th of Sept at about 4 pm, I took the chance of
walking Sukla to the ‘Ananda Mela’, organised by the AIWC. The venue was
about a kilometre from our house. Sukla had had a strong association with this
organisation and in her days as its cultural secretary, was involved in organising
this ‘Mela’ for several years. She had many friends there. They were aware of her
plight and were very helpful. We spent about an hour in the mela, moving from
one stall to another meeting her friends. Her face lit up as she met them. She did
not talk much and responded in monosyllables only. I realised later that Sukla
remembered her friends not as individuals, but only as familiar faces. Yet she was
happy in this environment. However, all good things had to end and we had to
return home as the time of her adverse mood swing was approaching But before
we could reach home we were intercepted by a couple of well-wishing
neighbours. On hearing that Sukla had been to the Ananda Mela, they were
happy, perhaps thinking that Sukla was improving.

A vast majority of even the urban population were still unaware of the cruel fact
that patients suffering from Alzheimer’s disease, were on the path of no return. I was
also happy that perhaps the alternative medicine was working. Sukla was eager to
continue in a participative mood, throwing in one or two monosyllabic words or
repeating what had been said by the others. One topic led to another. Meanwhile, the
time crept past 6 pm when we resumed our journey back home. On that day Sukla did
not have her evening spell of emotional instability. Again the nagging question
surfaced. Was it due to the alternative medicine or the effect of the diversion therapy?

73. Next morning, the dreadful spell of her behavioural disorder returned with a
vengeance. After breakfast, as was the routine, I took Sukla downstairs, which
 was quite sparsely furnished, so that she could move around freely. At about 8:30
she would gradually lapse into an agitated state, moving about, abusing, shouting,
in delusion, treating me as a stranger, hallucinating, trying to hit an imaginary
enemy. When I spoke to the doctor at Nagpur, he explained that Sukla was going
through the initial phase of ‘cleansing’ of the cells, which was normally a painful
process and that I should have patience. He sounded very convincing regarding
Sukla’s early improvement.

74. Along with the alternative medicine, the doctor had prescribed a mild dose of
sedative, Librim, to reduce the intensity of Sukla’s behavioural disorder.
Gradually this dose had to be increased throughout Sept. 2003. By mid Sept Sukla
used to sleep for sometime under the effect of the sedative. Once the effect of the
sedative had worn off, she returned to the agitated state. Under the spell of
Librim, Sukla used to sit or crawl on the floor, and then suddenly she would stand
and try to sit on a sofa or on a chair. Most of the time she would miss it, unless
helped in time and fall on to the floor. This called for constant vigilance. Once in
the morning, while escorting her to the toilet, I left her standing against the open
toilet door, to get a fresh towel, not realising that she was still under the spell of
sedative. As I was rushing back, I watched helplessly from a distance of a few
feet, Sukla just collapsed on the floor and fell sideways, her head hitting the floor.
As I made her sit up, a particular spot on her head swelled like a table tennis ball.
Cursing myself and in panic, I again made her lie down sideways, got some ice
and rubbed the swelling for a while till it started subsiding. When Lata, our
domestic help came to make the morning tea at 7 am, I again felt adequate to
handle the situation, having learnt a lesson though.

75. In spite of regular doses of alternative medicine administered along with the usual
Exelon, Sukla’s restlessness and intensity of behavioural disorder continued to
increase. As she walked all over the house, she used to turn so fast that on several
occasions, she fell, crashing against the dressing table, doors or the dining table.
Driven by a feeling of claustrophobia, she longed for open air. In an unsuccessful
attempt to open the window, she once tried to smash the window pane, which
cracked, but fortunately, held. Exhausted due to prolonged hours of restless
walking, she would sometimes make for the bed, but could no longer climb on to
it in the usual manner of sitting sideways, lifting and turning the legs inwards and
lowering the torso simultaneously. Instead she would literally try to climb on to
the bed by trying to step on it and fall in the process. While lying in bed,
sometimes, triggered by neurological aberrations, she would try to roll out of the
bed, in one sudden jerk, falling on the floor if not held back. Once in this process,
Sukla slipped out of my hand and crashed on to the floor, her head hitting the
steel cupboard, placed nearby. In utter panic I shouted for Lata and tried to lift
Sukla. Her right eye was covered with blood. Fortunately, the cut was above the
right eyebrow but it could have been worse. Round the clock vigilance about her
safety became of paramount importance. We needed help!
76. Sukla was now getting increasingly intolerant of others, as her frequent spells of
delusion continued. During her adverse spell she started hitting out, even at
known persons. Outsiders, such as plumbers or electricians, coming into the house
proved to be an immediate irritant for her and she swung into an adverse mood.

77. I was totally keyed in to Sukla’s expected recovery as assured by the Nagpur
doctor. As her shouting and ranting increased, in a strange way, my faith in her
recovery grew firmer. By now her bladder incontinence had increased. Added to
this there were signs of bowel incontinence too. She still visited the toilet on her
own. We also tried to bring some regularity, taking her to the toilet at fixed
intervals. This did help initially but with passing days incontinence increased. The
bed pan was of little use, as most of the time she was moving around and even in
bed she would not tolerate one. Adult huggies served to a limited extent. But with
the hope of her recovery being round the corner, I was ready to take the trouble in
my stride.

78. Through the best part of September, Sukla’s emotional instability increased at an
alarming rate, almost at an explosive rate. She now suffered almost 14-15 hours a
day in two almost equal spells, from around 8:30 to 5:30 pm. Most of the time,
she was on the move 15 to 20 times upstairs and downstairs, sometimes
collapsing on the floor in sheer exhaustion, shouting, wailing and writhing on the
floor in severe pain and crying out to God that she could no longer withstand the
pain. In Bengali, she would wail, ‘Thakur aar parina, aar parina’ and then with a
sigh she would say ‘Aar parlamna’ and collapse on the floor, totally exhausted. In
a while she would be up on her feet, striding belligerently towards a particular
corner of the living room, make a gesture of hitting out at an imaginary enemy,
shouting ‘Mor, mor’ and then ‘moregachche’. Even earlier, before she had this
problem, Sukla hated this particular corner of the living room behind a partition
where our domestic help would dump things indiscriminately and frequently get
shouted at, for it. After a prolonged period of behavioural instability, Sukla
would hold me with both hands crying and begging me to get her out of this pain
while I could just look on helplessly.

79. For the first time I felt cornered and trapped. Our neurologist was abroad. I could
not go to another doctor, since I had just put Sukla on this alternative treatment
which was to be given a fair chance. I just could not runaway halfway. So I kept
on ringing up the doctor and Mala. Mala, having been a patient of the doctor, had
total faith in his ability. She kept on assuring me that I should not get upset. She
herself had been treated with such biochemical alternative medicine. She assured
me that when the medicine, took effect, it might create the sensation of a steam
roller grinding through the body and smashing it to smithereens. The cleansing
process particularly was very painful, but she warned that we had to bear with it
and go through the full course. Otherwise. I was told that the injured tiger could
return with a vengeance after a few months and so, should be killed for good.
80. With renewed vigour we continued to administer the medicine. This was now
getting difficult. We had to break the capsules, mix the powder in water and force
her to drink it. But there was no sign of Sukla’s behavioural disorder getting
arrested. On the other hand it increased. Sukla suffered intensely, and we suffered
as well. Somehow I had not been able to confide in Nilanjana, Secretary of the
ARDSI Calcutta about this alternative medicine. So far I had underplayed the
extent of Sukla’s suffering even with our children. Now as if to get some relief for
myself I gave them the real picture. I also told them that though I was still hopeful
of their mother’s recovery, I felt like a man in a remote village trying to get rid of
the evil spirit which had possessed their mother by engaging a village witch
doctor who held burning chilly powder near their mother’s nose, in one hand, and
with another, hit her with a broomstick, while shouting some mantra’s to drive the
devil away.

Our children were of great help. They had supported me all through and still
did. They reasoned with me that I was treating their mother with biochemical
medicine prescribed by an MD (Medicine) and not by a quack. They urged me to
complete the course, or else, they felt, looking back, we might regret not having
tried the course till the end. As Sukla’s condition continued on a downhill trend,
in spite of regular doses of the biochemical medicine, my feeling of the ancient
process of driving out the devil lingered, whenever we forcibly administered the
medicine.

81. As we crossed over to the second half of Sept 2003, we had to tie Sukla’s hands at
the back for her own safety, as soon as she plunged into emotional instability.
While abusing those around her or even some imaginary person, she now
developed the habit of spitting. So we had to put a temporary mask to cover her
face. It was a pathetic sight and my heart cried out, but we had no option. Feeding
her now became increasingly difficult. We had to put her on the chair at the
dining table, with her hands tied at the back, and try to feed her after removing her
mask. But she would, most of the time, spit out the food and kick out at anything.
within reach. Once she kicked and smashed the sliding glass doors of the side
table. Fortunately she was not hurt as the glass was thick and the cracked pane did
not fly off. Next we had to tie her feet as well and place her on a chair to be held
down by another person. Thus we now needed three persons to feed her and that
too three times a day. Fortunately Diya, our grand daughter studying at Jadavpur
University was temporarily staying with us. So, breakfast and dinner was taken
care of, while for Sukla’s lunch we somehow had to manage. The process of
weight loss continued and by mid Sept 2003, Sukla’s weight had dipped below 50
kgs. from her usual 73 kgs.

82. At last, we finished the ‘cleansing’ phase of Sukla’s treatment and the next
package of medicine, meant to be a ‘brain developer’ arrived from Nagpur around
mid Sept 2003. Initially we were to administer this three times a dy. The third
week of September passed, but still there was no sign of improvement. On the
contrary, the intensity of her behavioural disorder continued to increase. We were
 now nearing the end of the prescribed treatment. On the 23rd of Sept.2003 while
speaking to the doctor and Mala I could not help betraying my utter
disappointment and frustration. The doctor while trying to restore my confidence,
though unsuccessfully increased the dose to six times a day.

83. By now, the duration of Sukla’s behavioural disorder had reached around 16
hours a day, in spite of increasing the potency of the sedative, Librium. When not
under the spell of a sedative, Sukla suffered intensely and cried in pain. During
the period of her delusion I continued to be a total stranger, the intruder to be
abused, hit at and thrown out of the house. During her hallucinations she would be
seeking out to kill an imaginary enemy. I did not know what went through her
mind while going through those spells. But she was always aggressive, retaining
her initiative and never looking defeated during the spell of hallucination.

This was just as well. Otherwise, if Sukla had cowered back in abject fear on
the face of an imaginary threat it would have been very difficult and stressful for
me to bear, day after day. Much later, I read in the case history of an Alzheimer’s
patient, who, before her ailment, used to be very scared of cockroaches and dogs,
as many generally are. After she was struck with Alzheimer’s, and during her
hallucinations, she gave the impression that thousands of cockroaches were
marching towards her, or that a dozen bloodhounds were barking and rushing
towards her, to tear her to pieces, when she had her back to the wall, with no
escape route. Her screaming and shrinking back in fear almost drove the family
carer to insanity.

Fortunately Sukla had been a brave person, retaining composure in a crisis.

She was not afraid of dogs, cockroaches or ghosts. Years earlier in the late fifties,
in Jullandher, while riding a motorbike through the army medical complex, with
Sukla on the pillion, an Alsatian broke loose from its owner, ran across the road,
and jumped on me while the bike was still in motion. In that dreadful moment, I
asked Sukla to hold on tight and I abruptly halted. The dog managed to bite my
right thigh and held on, till the owner with profuse apology and some difficulty,
disengaged the dog eventually from its well deserved ‘pound of flesh’. Sukla
unhurriedly, and without any sign of panic, got off the bike. We examined the
wound which was quite deep and had, by now, started bleeding. I parked the bike
and both of us proceeded to the nearest doctor’s chamber. Her robust attitude in
times of crisis had always given me a feeling of assurance and strength. Now in
her hallucination, mercifully, she never appeared to be at the receiving end and
always sought to destroy the imaginary threat.

84. The devastating month of Sept. 2003 was nearing its end, but not Sukla’s
suffering. On one of those dreadful nights, after a prolonged spell of behavioural
disorder till around 4 am, Sukla, totally exhausted, collapsed. After making her
comfortable, I too slept by her side. A noise woke me up. And there stood Sukla
swaying from side to side, her face drawn and eyes red, asking me to get out of
the house. Her period of delusion had started and she had not slept even for an
 hour. Since the advent of an almost explosive escalation of her behavioural
disorder, my home-grown diversion therapies were no longer effective in
providing me any relief. For the first time I had a sinking feeling and a sense of
inadequacy swept through me. Would I be able to handle the situation any longer?
Would Sukla be able to go through such spells without any damage? Should I
give up and surrender to another neurologist to bring her some relief? Would I be
able to bear the stress another 7-10 days till the end of the course of treatment? I
spoke to the doctor in Nagpur. He increased the dose of the remaining medicine to
8 times a day. This meant that the course would end on the 2nd of October, only a
few days away and our neurologist was scheduled to return on the night of the 3rd
of Oct. 2003. Now this was a definite time frame and a seemingly achievable
target, whatever might be the result. With renewed energy, I braced myself to face
the next few days.

85. The last few days of Sept 2003 did not bring any respite. Sukla continued to
suffer, while we forced her to take the powder from the capsule, mixed in water
eight times a day. Her restless wandering around the house, moving upstairs and
downstairs, shouting, wailing and collapsing halfway on the stairs of sheer
exhaustion continued. I was afraid that anytime, she might collapse for good. But
she could not be stopped. I consulted the doctor at Nagpur. He assured me that
there was no immediate danger of her life. She kept on losing weight. It was
difficult to take her weight, but the most steady reading we could manage, gave a
rough indication of only 40-42 kgs. By now the doctor had stopped assuring me
of Sukla’s radical improvement. He felt that just when Sukla was put on the
course of Biochemical medicine, she was also struck with the worst phase of
Alzheimer’s disease, neutralising all the effect of the alternative medicine. If so, it
was very a confusing and a very unhappy coincidence indeed! The doctor was
however keen to continue with the parallel treatment, if our neurologist had no
objection.

86. With an intense sense of guilt, I now prepared myself to face our neurologist.
From the doctor at Nagpur I collected the full composition of the alternative
medicine used by him, on the plea of enabling the neurologist to decide if parallel
treatment could continue. Needless to say I did not want to continue the treatment
with alternative medicine and desperately awaited the neurologist to take over and
if required, start necessary treatment to wash out the adverse effect if any, of the
biochemical medicine from her system.

87. On the 4th of Oct, around 10 am, our neurologist visited Sukla. At that hour, Sukla
was already in a state of acute behavioural disorder. The neurologist was alarmed
at the intensity of her outburst. He felt that unless Sukla was subdued
immediately, by putting her under heavy sedatives, she might suffer from a stroke
anytime. In her agitated state he felt it was not possible to discern if she had
already suffered a mild stroke. He was not in favour of parallel treatment with the
alternative medicine and felt that such treatment should not have been undertaken,
as so far there was no medicine that could cure Alzheimer’s disease. He did not
 feel unduly upset about the effect of the pure derivatives of salts and minerals
administered to Sukla and gave the impression, that with time, its effect would get
washed out of the system. His immediate concern was to put Sukla under heavy
sedatives. Along with Exelon, Sukla was to have 5 ml. of Serance, three times a
day, to control her behavioural disorder. For the first few days Sukla had long
hours of sleep and only 3-4 hours of agitation and restless walking around.

88. Initially, it was a great relief for us. By the second week the dose of sedation was
reduced. However the duration of her behavioural disorder, though in lesser
intensity continued for a couple of hours each, after 8:30 am and 5:30 pm. I also
observed that Sukla was bending a bit forward and as she walked her right
shoulder was drooping and she dragged her right leg, while using her left hand
more often. By the third week of October, as the sedatives continued, her bending
forward was so pronounced that she almost doubled over, and the stiffness in her
body increased considerably. She also developed some other disturbing
symptoms. As the time of her adverse mood swing approached, her pulse rate shot
up, she trembled with a spate of rigor while grating her teeth. She became quiet
and started losing her focus and coordination. As we stepped into the second week
of October, she was drooling, her sleeplessness continued and she wandered
around the house throughout her wakeful hours. She was already constipated and
now she developed difficulty in urination. She sweated profusely during the early
hours from 3 am to 8 am. I had been discussing this with Nilanjana, Secretary,
ARDSI from time to time. She had alerted me regarding the side effects of
sedatives and symptoms that may warrant a doctor’s intervention.

89. The last visit of our neurologist had been at 10 am, when Sukla was already under
the grip of behavioural disorder, making a proper examination of the patient
impossible. So I requested our neurologist to visit the patient before 8 am. On the
24th of October 2003, our neurologist visited us. Sukla was sitting on the sofa
nearly doubled over. After examination, the doctor stopped Serance immediately
and replaced it with Librium, the milder one. He confirmed that Sukla had already
suffered a mild stroke which had affected her right side and had resulted in the
drooping of her right shoulder, the dragging of her right feet and less use of her
right hand. For her body stiffness and the forward bend, he advised
physiotherapy. Through our neurologist I got in touch with a very experienced
person in the field, who runs an organisation for providing physiotherapy support.
After detailed examination of the patient and a discussion with our neurologist,
our physiotherapist felt that in her present condition of restlessness and
behavioural disorder, it was not possible to put Sukla under proper physiotherapy
and derive any benefit and that we had to first reduce her stiffness and bring the
intensity of behavioural disorder under control. But how? Heavy sedatives meant
drug induced stiffness and fewer sedatives meant more intense behavioural
disorder. It was indeed a vicious circle and I urgently needed a way out.

90. Dr. Som Shankar Bhattacharjee, Sukla’s first cousin, a surgical specialist, had
retired from the Armed Forces and had settled down in Salt Lake. He was of great
 help and arranged an appointment with a neurologist well known to him. The
neurologist examined Sukla and along with other supportive medicines, changed
the sedative to Risdon, 5 drops, three times a day. After a week, Sukla’s stiffness
in the body and the duration of the agitation somewhat declined. However before
I could heave a sigh of relief, feeling that the withdrawal process was in the right
direction and a way out was in sight, a much more challenging drug induced side
effect, took the centre stage. One morning we found that Sukla was having severe
lockjaw and normal feeding was impossible. This was an emergency; we had
jumped from the frying pan to the fire. No advice on immediate measures for
opening the lockjaw was forthcoming and we had to depend on robust common
sense. We made the food into a paste form and try to feed Sukla by prising open
her mouth with the spoon, but failed. Mercifully, we discovered two partly
decayed teeth in the molar area and a small opening between a pair of teeth in the
front to push the pasty food through. She could not chew but thankfully, she could
swallow through. It was time consuming and a delicate process requiring
immense patience, but we had made a start. We did not know if the lockjaw was
due to the cumulative effect of the sustained use of sedatives, or just the effect of
the new sedative. But this development, on top of Sukla’s already existing
restlessness and behavioural disorder, made the situation doubly difficult for us. I
gathered the jaw would gradually unlock, as the side effect tapered off.
Meanwhile we would have to continue our improvised method of feeding Sukla
as best as we could. A well-intentioned but a rather crude suggestion to hasten the
process of unlocking the jaws was to insert a tapered wooden screw, through any
small opening between the upper and lower sets of her teeth and give the screw
half a turn every day. This was more of an engineering solution than of medical
science and quite up my street. But apart from the crudity of the method we were
already using, that of using existing openings in her set of teeth for feeding her as
best we could creating fresh openings was unthinkable. Sukla had gone through
enough rough handling. So I preferred to wait.

91. Sometime around mid Oct 2003, Sukla developed pronounced bowel
incontinence. With her present state, she needed a close watch and timely
assistance around the clock. We now needed urgent help and could not wait for an
attendant, specially trained to take care of a person suffering from Alzheimer’s
disease. One option was to get a trained nurse. Sukla was now emotionally
unstable during the best part of her wakeful hours, occasionally turning violent
and was prone to hitting others. The last thing she needed was any form of
conventional nursing. She required a close watch, timely help and tactful handling
during her behavioural disorder. A normal nurse might have to unlearn a great
deal before starting from square one. Somehow I felt that I should get an attendant
with the right attitude from the nearby care centre, someone who had the patience
and the compassion to look after such a patient. Then I could take her through the
routine required for an Alzheimer’s patient – assisting in the toilet, bathing,
dressing, feeding and so on, as I had learnt from the existing publications of care
giving and practical handling. Rather a tall order, but I could try. Around the third
week of Oct 2003, we got a day attendant from a local care centre and after a
 couple of weeks, one for the night as well. Fortunately Sukla, apart from mild
behavioural discrepancy, did not react violently to the new faces and nor was she
totally uncooperative as we went through the routine drill. It was a tremendous
relief for me, but not without a nagging feeling as to how such attendants would
behave with Sukla during my absence. It was difficult, even for a family carer, to
develop tolerance and understanding for a person afflicted with Alzheimer’s
particularly when the patient, acting quite normally, turned hostile without any
apparent reason. Thus Sukla was to see several changes of attendants before we
settled down with the right ones in early 2005.

92. By the end of Nov 2003, after a gruelling time, Sukla’s condition of lockjaw
gradually eased off and with that the process of feeding her became easier. Due to
our feeding her through a small opening in her teeth, we had managed to inflict
irreparable damage to a perfectly good set of teeth. A few shaken from the roots,
dropped off one by one, while we waited in extreme anxiety, fearing that anytime
one of the uprooted teeth might get into her windpipe.

93. The last few months had been a hectic time of fire fighting for us when Sukla
went through the worst phase of her suffering. I now took time to thank Mala and
the doctor from Nagpur, for their deep concern and sincere effort, during this
period concluding that perhaps, the severest stage of Alzheimer’s overrode the
effect of alternative medicine thus depriving Sukla from any benefit from it.

But I could not take myself off the hook so easily. The experience continued
to haunt me. Perhaps my misadventure of subjecting Sukla to this alternative
medicine triggered Sukla’s worst phase of suffering much worse than any of the
cases I had come across during my interactive sessions of the care support group.
My friends including some doctors assured me that when a disease had no known
remedy, close relatives of patients indulge in even trying totally unscientific
miracle medicines on the patient. In that context they felt that the use of an
alternative biochemical medicine, packaged by an MD (Medicine) for Sukla was
fully justified. Otherwise, looking back, it would have trouble me for having
missed an opportunity of curing Sukla. This was all very reassuring but when the
memory of Sukla’s suffering flashes back, my sense of guilt returns. In hind sight
I feel that I should not have tried the alternative medicine. But, that is hindsight
only! It has to be left to the decision of involved family of the patient when such
an opportunity appears.

94. Sukla was still dependent on a maximum dose of Exelon which apparently, had
reached saturation. The experiment with alternative medicine had ended
disastrously and now that the subsequent problem of lockjaw was easing off, my
focus turned towards newer medicines if there was any. In mid Nov 2003 our
neurologist informed me about the latest medicine – the first really effective
therapy for Alzheimer’s in moderate stage – Mementine Hydrochloride (Ebixa) of
German origin. Apart from retarding the rate of deterioration, it also claimed to
improve the state of mental faculties, if the patient was in the moderate stage. This
 was also confirmed in one of the papers presented by a neurologist during the 9th
All India Annual Conference of ARDSI, held in Calcutta in early Nov 2003 where
I was invited to present a paper during the ‘Caregivers’ session. I focussed my
paper on the ‘Emotional Stress on Family Carers’ and suggested some home
grown therapies for the patient to provide relief for the carer. Thanks to the
ARDSI Calcutta Chapter, I could get invaluable exposure to Alzheimer’s Disease
from the papers presented by Indian and foreign experts . Coming back to the new
medicine, Mementine Hydrochloride was not available in India. However our
neurologist arranged about a month’s supply of unused medicine, imported
directly from Germany, under the indigenous trade name Axura, from the family
of a patient who had unfortunately expired due to other complications. Sukla was
put on Axura from the end of Nov 2003. Fortunately, by mid Dec 2003, I could
arrange an uninterrupted supply of the medicine, Ebixa, its export version from
UK and Singapore, through our younger daughter Sravani and our son Joy. Sukla
was well into the severe stage of her disease and improvement, if any in her case,
could only be limited. However insignificant be the result, for the time being, it
brought some relief from the stagnancy and deadlock, now that we were able to
do something more for Sukla, having put her on a better medicine and a newer
avenue of treatment.

95. Sukla was still suffering though in lesser intensity from behavioural disorder for
5-6 hours a day and from restlessness throughout her wakeful hours. But for a
couple of months during Dec 2003 and Jan 2004 there was an improvement in her
cognitive prowess. She sometimes spoke a sentence or two quite coherently and
on a few occasions could give indication of her need to visit the toilet. I recollect
that on 10th Jan 2004, she spoke on the phone to our son Joy calling from
Australia, a few quite coherent sentences, not only in response, but also inquiring
about his health and when he was likely to return. Here Sukla really peaked,
reacting appropriately on the phone in the absence of a visual picture, which she
had not done since the severe stage had begun. A few days later on the 14th of Jan
2004, our younger daughter’s sister-in-law, on a short trip from the UK visited us
after about a year. Hearing her voice Sukla walked up to her at the first floor
landing and welcomed her addressing her by her pet name, quite affectionately.
These instances brought a flicker of hope and we looked forward to some
improvement. But it was short lived. It ramped up for a couple of months, then
flattened, hitting a plateau between Feb-Apr 2004, then slowly and almost
imperceptibly commenced a downhill trend following the law of diminishing
returns.

96. Sukla’s behavioural disorder was tapering off very slowly. She had started with 5
drops of Risdon, thrice daily in Nov 2003. I now tried to initiate the process of
withdrawal of the sedative in early Dec. Premature reduction of the dose caused
some increase in the intensity of agitation, requiring part or full restoration of the
dose – two steps forward and then one or two steps backwards over a period of
time. I seemed to get the hang of it by mid-Jan 2004. Sukla had stabilized on 4
drops of Risdon, thrice daily. Further reduction would take quite sometime.
 Around this time our house physician brought a friend, an established
neurologist, for a house visit to check up on Sukla. After his visit and a few tests,
he quite candidly advised me that since I was already using the latest medicine
Mementine Hydrochloride, he had nothing else to prescribe for Alzheimer’s
disease. However, for combating Sukla’s persisting behavioural disorder, he felt
that we should consult a psychiatrist since they were more experienced in
handling these cases and used a wider range of sedatives in the course of their
practice. So, sometime in Jan 2004 through Som Shankar, Sukla’s cousin I turned
to a psychiatrist. On his first visit he changed the sedative to ‘Loxapac’ that was
more effective and had fewer side effects and recommended a few other
medicines in its support. This time I did not have to block out the letterhead of the
doctor since Sukla had gone past that stage.

97. By late Dec 2003, Sukla’s physical stiffness had reduced sufficiently and Som
Shankar arranged for a physiotherapist, to attend to Sukla around 45 minutes a
day, 4 days a week. Initially it was a difficult process and two persons had to hold
her in position for the physiotherapist to work. It was quite painful for her since
the joints were still stiff and took time to yield to the exercise mode. The progress
was understandably slow, as Sukla was unable to cooperate during the exercises,
as her brain was now incapable of sending a command to the body to do a
particular movement, which is what happens in the case of a normal patient. Sukla
was still leaning on her right side with her right shoulder drooping, her right hand
limp and her right leg dragging, as she walked. However, as we continued with
physiotherapy four days a week in the mornings, followed by about half a
kilometre of assisted walks in the evening, she improved considerably within the
next few months. The physiotherapist, Bishnu has been attending to Sukla since,
and I believe, this, has ensured her mobility till early 2007 and her ability to walk
short distances with assistance even till today. Over this period, Bishnu has
developed a strong attachment and a deep concern for the patient, and has become
almost a part of the family.

98. In Jan 2004, though the duration of behavioural disorder was clearly on the
decline, Sukla was restless for the best part of the day and had to be watched all
the time i.e. for about 13-14 hours a day, a rather strenuous duty for the day-
attendant. As I mentioned earlier, we had taken the routine precaution by
streamlining the furniture and padding up the furniture legs so that Sukla could
move around easily, without any accidents. Yet an accident came through totally
unexpected quarters. When Sukla was being fed, the attendant had to hold her
hands, while Lata our domestic help, fed her. Due to some neurological
aberration, Sukla used to go through involuntary spasms of alternating stiffness
and relaxing of the body. In one of those motions while stiffening, in her clenched
right hand fist, Sukla held the traditional iron bangle worn by the attendant, the
edge of which was now sharp after years of use. The bangle cut into Sukla’s palm
at the joint of the forefinger and the thumb. As the attendant tried to disengage the
bangle, Sukla’s grip tightened and the bangle edge sank deeper, cutting through,
as we realised later, the ligament as well. The wound was dressed and her palm
 was spread out and bandaged with a splint shaped like a table tennis bat, by our
house physician, to prevent any deformity. But it did not help. For the first few
days the bandage had to be removed to dress the wound. On removing the
bandage after a month, we found that the wound had healed but her right palm
remained deformed. An X-ray revealed that only a surgical intervention might
correct the deformity. But considering her present state we decided against it.

99. A few weeks later Sukla hurt her left hand, the active one, by hitting the wall in
the toilet due to her sudden jerky movements, as reported by the attendant. Her
left hand was a little bruised and broken just below the elbow. It was attended to
in a routine manner and the bruise healed but the swelling remained. About a
week later, Bishnu, during physiotherapy, suspected a fracture of her left arm and
advised an x-ray. Sure enough, the x-ray revealed a fracture of the ulna, the
thinner of the two bones of the left arm. Som Shankar set the bone right and fixed
the plaster at home. A repeat x-ray after six weeks confirmed full recovery. But I
could not escape the tormenting thought that Sukla had to suffer with a fractured
bone in silence for over a week, helplessly submitting to physiotherapy. How can
I forgive myself?

100. Both the incidents highlighted the need for round-the-clock safety watch,
as the patient was very much mobile and totally unaware of her own safety. The
attendant had to be more alert and watchful to prevent accidents. For this, she
needed to have the right attitude for developing compassion and an understanding
of the behavioural discrepancy of the patient. This was more applicable for the
day attendant, as Sukla was active during the day. But it was very difficult to get
such an attendant. Frequent briefing and vigilance apart, the main winning factor
proved to be my own commitment, compassion, care and affection for the patient.
Even so, I had to go through three changes of the day-attendant, and one for the
night, before I could settle down reasonably well with the right pair of attendants
for Sukla from early 2005. Though by then the storm had almost passed.

101. Spring 2004 was soon overtaken by an early summer. Sukla was on Ebixa
and the euphoria for the initial ramp up in Sukla’s improvement had practically
died down. She now spoke very little. Her restlessness continued for several
hours, though the duration and frequency of her behavioural disorder steadily
declined. She however took sometime to fall asleep at night. On the doctor’s
advice, she had to be given a sleeping pill at night, in addition to a sedative spread
over the day. Sukla also suffered from constipation and some laxative had also
been prescribed for her. I now recommend the process of gradual withdrawal of
all three. This was to continue throughout the year 2004 and well into 2005. Take
a step forward, then roll back, if required, and try again, ensuring always
minimum deterioration of her behavioural pattern. It was a slow and delicate
process, but I was making headway till around the end of 2004, when ‘Loxapac’,
the sedative, went out of the market and I was forced to revert to Risdon. This
somewhat slowed the withdrawal process and it spilled over to 2005. Meanwhile
Sukla continued to be restless and walked around the house. She was becoming
 rather quiet, almost mute, responding mostly in monosyllables and seldom in a
full sentence. But her eyes showed ample comprehension yet, and she appeared to
recognise us. Over all, I felt she was coasting towards a peaceful and passive
state.

102. One aspect however remained unresolved and disturbing. Sukla had still
been losing weight and by mid 2004, reached as low as 39 kgs. She was an
emaciated bundle of bone and skin, strangely though, her appetite was fine and
she was taking reasonably heavy protein-rich meals. I had been talking to the
doctors but could not find an answer, as Sukla withered. It was an agonising
period and I thought Sukla was steadily reaching her final exit. In July 2004,
Sravani, our younger daughter, on a visit from the USA brought a container of
calorie-rich powder, which she informed me, had restored the weight loss of her
friend’s ailing mother, to a great extent. I consulted our house physician. He
confirmed that calorie-rich powder would help but along with it she would need a
protein as well. He explained, and as a layperson I understood that though Sukla
was eating regularly and digesting her food as well, there was little metabolism
as this depended on the brain, which in Sukla’s case was grossly
underperforming. As a result, the digested food contributed little to the body and
the much needed ingredients contributing protein and calorie etc., left the system
as waste. Added to this, she was undergoing sustained physical stress due to
restlessness and walking for long hours. The combined effort of these had caused
her massive loss of weight. He prescribed a calorie-rich powder like ‘Berry
Black’ and protein powder to be taken separately, with at least an hours gap from
normal meals. This halted the further loss of weight, but it was not till early 2005,
that the process of weight gain, also partly contributed by Sukla’s declining
restlessness and walking, was discernible.

103. I think, I need to digress a little at this stage, because the year 2004,
brought me face to face with some disturbing challenges in my own health front,
committed as I was otherwise, as a family carer of an AD patient, in her severe
stage. The year started with severe skin degeneration – a type of psoriasis –
rapidly peeling of skin under both feet, making me immobile for weeks. Though
medicine brought down the virulence and I stared moving out, its nuisance value
continued. Before I could settle down to live with it, my eye problem took centre-
stage. I had glaucoma in both eyes, detected in the year 2000, several years late,
when much damage had already been done; as also massive haemorrhage in the
right eye, requiring repeated laser treatment. By mid 2004, dense cataract, in
addition, almost blindly me and called for an early operation. Pre operation
scanning revealed that about 85% of my optic nerves had already been destroyed
and sudden blindness could not be ruled out. Anyway, early operation was
imperative to preserve what was left and this required the presence of our son or
one of our daughters. But this was not all. Around the year 2000, my pulse rate
had crashed down to 54 from the usual 72 and I had since been on medicines and
in a ‘wait and watch’ mode. Now, in mid 2004, my pulse rate went down to 45/46
and my pre-nineties ailment of missing heartbeats reappeared, without warning, to
 bring down the rate to 39/40 per minute, sometimes making me weak,
uncomfortable and somewhat breathless. Already with some routine medicine, I
had been living with a few old age ailments like hypertension, spondylitis, an
enlarged prostrate gland and frequent bouts of cold and bronchial infection. But
the latest development, piling up in quick succession, regarding my eyes and
heart, was unsettling. I started the mental exercise of navigating through the house
as a blind man, and felt that I was doing well when the thought of Sukla brought
me to an abrupt halt. With Sukla around in a helpless condition, I just could not
afford to be blind, nor could I remain incapacitated by a heart ailment. The last
thing I wanted was to dump two invalids on to our children. I had been doing well
as a family carer, Sukla needed me and I very much wanted to go along with her.
I had to combat through this mess. This gave me some strong sense of purpose
and seemed to put me back firmly on the rails, from a state of wavering.

104. After sustained medication and following another halter monitoring, the
frequency of missing beats reduced considerably and the pulse rate increased
marginally to 48-50. The cardiologist still preferred medication and a ‘wait and
watch’ policy until adverse symptoms like fainting or a black out manifested
itself. In Dec. 2004 when our elder daughter, Indrani visited, my left eye, the
better one was operated upon with encouraging results. My right eye which was
operated upon, a few months later when our younger daughter Sravani came, did
not recover well, since in addition to Glaucoma, repeated laser treatment had
damaged it more severely. Overall, it was comfortable going again, not as good as
new, but it would do for the present. My spirits lifted with Sukla showing signs of
gaining weight and becoming passive and pleasant in spite of a substantial
withdrawal of sedative and the dose sleeping pill.

105 Looking back, this severe stage of Sukla’s ailment had been extremely
stressful for the patient as well as the carer, but it has also provided a few useful
lessons summarised below:
a) Parallel treatment with alternative medicine may be tempting, when there
is no cure for the disease, but it should preferably, be undertaken in consultation with
the doctor in charge, so that, if required, it can be halted in time.
b) Sustained heavy dose of sedative may be inescapable for Alzheimer’s
patient, during an intense period of behavioural disorder, but close monitoring should
ensure that the dose is tapered off in time before the serious drug-induced ailments
such as body stiffness, other systems disturbances and the condition of lockjaw create
an emergency.
c) Apart from the neurologist, for application of the right kind of sedative to
control extreme behavioural disorder, it may be helpful to consult a psychiatrist as
well, since in their practice they handle a very wide range of sedatives.
d) Body stiffness is common for an Alzheimer’s victim and continuing
physiotherapy 3-4 times a week is a great help in maintaining some degree of
flexibility of the limbs and at least, limited mobility ensuring ease of handling as well.
 e) The importance of installing measures for ensuring the safety of the
Alzheimer’s victim cannot be overemphasized. Equally important is the need for relief
and respite for the family carer by employing suitable attendants.
f) With the brain under performing, a person struck with Alzheimer’s may
suffer massive weight loss, due to inadequate metabolism. Under the circumstances,
protein rich and calorie dense food supplements can be helpful for the restoration of
weight up to a desired level.

THE TERMINAL STAGE

(After the storm, as she smiled again)

106. By April 2005, after about a year’s effort, it was possible to fully
withdraw both the sedative and the sleeping pill, without any detrimental effect on
Sukla’s behavioural pattern. It was a great relief. Sukla was still restless for
several hours a day, wandering about in the house, sometimes flailing her left arm
in the air as if hitting out at an imaginary evil and uttering some abusive words.
These were quite manageable, compared with what we had gone through. At night
she normally fell asleep at around 9:30 pm but occasionally kept awake longer,
when I had to put her to sleep, patting her lightly and singing her favourite
lullaby. She spoke in monosyllables and mostly in response to others, but rarely
on her own. She seemed to recognise me alright, but not perhaps as her partner of
50 years, but possibly as someone close, someone dependable who would provide
a safe haven for her. When I went out of sight, she would keep looking
expectantly at the place where I usually sat and her eyes lit up whenever I entered
the room. One day, returning from outside, instead of turning right towards her, I
turned left towards the kitchen to put some provisions down. Immediately she
blurted out on impulse, ‘Manu, I am here’. This was a full sentence from her after
quite a few months. I froze in my tracks, turned around, only to face her
disarming smile.

107 Sukla now needed assistance in all activities. One day while
brushing her teeth we found, she could no longer spit out the water after rinsing
her mouth. Instead she swallowed the water. After repeated practical
demonstrations, she succeeded in throwing out the water, but this remained a
problem for maintaining her oral hygiene. We have since changed the toothpaste
to a ‘children’s’ variety so that swallowing up the paste would not pose a
problem. But, this was not the solution. Our house physician suggested that after
brushing her teeth, we could wipe the inside of her mouth with a wet cloth,
followed by one soaked in a solution of a mouthwash such as Listerene. Easier
said than done! Thanks to our effort of force feeding her during her condition of
lockjaw, Sukla had been left with a few chipped teeth with sharp edges. And now,
every time the attendant tried to wipe the inside of her mouth, Sukla, thinking
perhaps that this was something to eat, would bite her fingers. For some time we
 had no solution. Then I wore short lengths of sterilised rubber pipe, cut from the
garden hose, on my fingers and kept her mouth prised open, when the attendant
cleaned inside her mouth. She did not like it at all and bit my rubber clad fingers
sometimes, but it was quite manageable and the process worked well.

108. Sometime in April around Good Friday, our day-attendant had to leave.
Incidentally, she was the third one who had joined a few months earlier. She was
not keeping well. She appeared to be weak and often fell asleep while looking
after Sukla, posing a safety hazard. After some diagnostic tests I gave her a
months medicine prescribed by our house physician and let her go for a lighter job
elsewhere. Luckily her replacement, a Christian woman of about 45 years, was
just the type of attendant Sukla needed in her present state. Her name was Jhunu,
She was well informed and well trained, having had a long spell of five years,
attending a reputed doctor’s ailing mother, till the old lady expired at the age of
95 years. She was so indispensable that she had to accompany the patient even to
the nursing home. Her routine work with the patient was clean and she
meticulously guarded against infection. Within a few days, she settled down to
create the right environment for Sukla. She would baby-talk, sing, dance and even
make funny gestures to make Sukla happy all through her wakeful hours. She had
strong values, a high degree of loyalty, and worked with the zeal of a missionary.
But they were very poor. She had been working for the last 25 years, starting with
a meagre Rs.15 per day and her husband working in a church just in lieu of a
months ration for one. They stayed in a rented room in Guma about 50 km from
Kolkata on Bongaon line and commuted everyday. A hard life but she was always
cheerful.

109. Outwardly Sukla, appeared to improve and looked happy and amused with
Jhunu’s singing, dancing and talking. Sukla liked her to be around. Looking back,
I realised that Jhunu was just the type of attendant needed for an Alzheimer’s
patient, in the terminal stages. Even at this stage, it was possible to enhance what
little quality of life was left for Sukla, in a significant way. Within a month of her
joining at our place, there was unexpected change, for the better, in Jhunu’s
fortunes. In appreciation of his services to the Church, her husband was allotted a
piece of land near Guma railway station close to the church and given monetary
assisstance to build a small house. Further, in addition to his free, monthly rations
he was put on a monthly salary as the caretaker of the church.They had been
shifting from place to place with hardly two square meals a day for the last 25
years. Now, all of a sudden, within a few months, they had a roof over their head
and a modest earning to run the family. They believed that all this happened due
to the silent blessing of their ailing mother i.e. Sukla. While strongly expressing
this, Jhunu vowed that whatever happened, she would look after her ailing ‘Ma’
till the end. It was a great relief for me. For Jhunu was otherwise well versed with
outstation duties, having worked in Bangalore and Pune and she was ready to
accompany Sukla to Delhi or Dehra Dun, wherever our children would take their
mother when I was no longer around.
110. We were taking Sukla for an evening walk for a distance, now reduced to
about 250-300 metres with Jhunu and Lata assisting her. She spent summer
evenings and winter mornings in our front lawn for about an hour everyday.
During the early eighties, she had planted most of the flowering shrubs and the
hedges to block the view from the road. In those days, Sukla used to spend quite a
lot of time in the garden. Now she seemed happy to spend some time in the
garden. Barred from the road by thick hedges now, our lawn provided some
privacy though in the distance one could hear the unending stream of traffic from
the road beyond. She always liked a bit of privacy, but she also wanted to feel the
‘life’ flowing nearby.

111. The silent onslaught of Alzheimer’s no doubt continued and there was a
slow but steady decline of her cognitive prowess, what little was left of it. But this
was overshadowed by substantial reduction of her behavioural disorder, steadily
being replaced by her cheerful and smiling demeanour, radiating warmth and
affection. Her twinkling eyes toed you that she knew you and that she was happy
to meet you. I was now enjoying every moment I spent with her. Nilaanjan,
Honorary Secretary of ARDSI Calcutta, had been visiting us from time to time.
She had seen Sukla going through the worst period during 2003-2004. In one of
her visits in mid 2005 she was very happy to find Sukla smiling again. She said
something wonderful. She believed that Alzheimer’s patients might make a
family go through severe strain at some stage, but some of them also return to
those close to them plenty of happiness and pleasure during the early period of the
terminal stage. I fully realised it. That summer I even indulged in the luxury of a
short trip of about a week to Joy’s place in Delhi and Indrani’s at Dehra Dun.,
while Sravani who was visiting from the USA held the fort and looked after her
mother. For me the outing after 3 years was a mixed feeling, as I missed Sukla
most of the time and now and then worried, quite unfairly though, if her routine
was being fully taken care of in my absence.

112. All seemed to be going well for the next couple of months till the end Sept
2005, when we faced an unexpected development. As reported by the night
attendant, at about 7 am, while Sukla was having her teeth brushed, standing in
the bathroom, holding on to the basin, Sukla suddenly collapsed on to the floor.
Luckily the attendant took her weight and cushioned her fall. I was in the balcony
waiting for Sukla. On hearing the shout from the attendant, I rushed in, I found
her lying stretched on the floor breathing heavily and noisily. It lasted for about
10-12 minutes, before we could shift her to the bed. She appeared exhausted. By
the time the doctor came around at 8 am, all her symptoms had subsided and
Sukla was almost normal. It happened again the next month in the morning. I
rushed in early enough to find her body stiffened up and her breathing held up as
she was on the point of collapsing. We slowly put her stretched out on the floor
her head resting on my lap, and watched helplessly in panic for what seemed to be
an eternity. After about 35-40 seconds, she breathed out noisily. Till then I
thought she was not going to breathe again and would leave us for good.
Thereafter, heavy and noisy breading followed for about 10-15 minutes and then
 we shifted her to her bed. Our neurologist suggested that a sudden drop in blood
pressure might have caused such a collapse. We procured a wrist mounted BP
instrument and during the third such attack, which came within a week, measured
her BP and found it normal at 130/80. The mystery was finally solved, during the
fourth attack, which came a few days later, rather early at 6 am when Sukla was
still sleeping by my side. Suddenly I woke up to find her flailing her arms and
legs several times. Her body stiffened, her eyes rolled up, and her breathing
stopped for about 40-50 seconds again. And then the usual restoration process
took place with heavy and noisy breathing. This time as I explained the
symptoms, our neurologist diagnosed it as a type of seizure, an Alzheimer’s
patient normally suffered from, during the terminal stages. He prescribed
medicines (Eptoin). Thereafter such incidents of seizure became milder and less
frequent, about once or twice a year.

113. Sukla continued to gain weight throughout the year 2005. By Aug 2005,
she weighed around 47 kgs now gaining about a kg per month. This perhaps, was
not entirely due to protein and calorie supplements, but most probably it was also
due to the combined effect of these supplements and the substantial reduction of
her restless wandering around the house. She maintained her cheerful disposition
during the wakeful hours. However her bladder and bowel incontinence steadily
increased. Since early 2004, when not walking around, she used to sit by my side,
snuggling up to me, on the sofa set covered with a rubber sheet. Then she used to
maintain some regularity and give some indication of her toilet requirement. But
now this was no longer possible. We tried adult huggies for a while, but it proved
inadequate, unhygienic and messy. Next, I got a steel chair with a commode
facility, where the pan could be removed without disturbing the patient. After a
while she felt uncomfortable on it, in spite of my providing a foam cushion.
Finally we got a plastic commode chair with a comfortable bucket seat, which
was modified so that the pan could be removed without disturbing the patient.
This chair was quite light and comfortable, but there was one safety hazard. One
morning Sukla while dozing leaned forward and toppled over and fell from the
chair, hurting her forehead and nose. I was unable to pick her up. Lying by her
side, I cradled her head and shouted for help. Fortunately, she was not seriously
hurt, but it could have been worse. Thereafter we improvised a comfortable strap,
to prevent her from leaning forward. This arrangement appeared to have stood the
test of time and Sukla spends 7-8 hours a day, in three phases, in this chair
without any apparent discomfort.

114. Looking back I was quite convinced that Sukla’s preferences were
undergoing changes in sync with her memory bank, and receding in
reverse chronological order, as Sukla was steadily losing her existing
memory on a ‘last come first out’ basis. As mentioned earlier, this
phenomenon was evident from her declining interest in people we had
met not too long ago; in her choice of music; as she no longer
responded to her favourite western pop music; in her choice of
language as her English vocabulary dried up and she was confined to
 Bengali only. Thus by reverse steps her memory of out post army
days, and then our life in the army was erased out and she steadily
proceeded towards her school days and her childhood. I have been
emphasizing this aspect as this is the secret improvising diversionary
mechanisms during the crisis period as also of keeping her happy and
interested, enhancing her quality of life as long as possible. Thus in
2005, I found that she had stopped responding to her favourite Hindi
music and favoured only Bengali music, particularly Rabindra
Sangeet. As I mentioned earlier, the last one she responded to by
tapping her foot, was the music from Tagore’s dance drama
‘Chitrangada’, as at the age of 5-6 years this was the first dance drama
she had taken part in.

115. Sukla could no longer speak but she could comprehend what was
spoken, provided it pertained to something stored in her residual
memory. Thus I found that Sukla was fond of Bengali fairy tales, she
had heard in her childhood from her mother and her grandmother. Our
children grew up with mostly English fairy tales. But Sukla was very
happy when I narrated to her the exploits of Tuntuni, the clever little
bird with a sense of humour, particularly the one where Tuntuni stole
the king’s money, a rupee only, from those placed on the roof of the
palace to dry after a long rainy spell and how the king’s men raided his
nest and recovered the money and captured Tuntuni and finally how
the bird escaped to freedom leaving the king or was it the seven wives
with their noses severed! She also liked the other one, when Tuntuni
pricked his backside on a thorny Brinjal bush as he was perched on it,
singing to celebrate his success and when he had to go to his friend,
the barber, for surgical intervention to extract the embedded thorn. She
used to be also very happy listening to the adventure of the cunning
old lady, the ‘Lao garhgarh buri’ visiting her daughter’s place, who
tricked the jackal, the bear and the tiger by convincing them with sheer
animal logic and how after a few months, she bluffed them on her
return journey, riding in a giant gourd shell, rolling and singing on the
way back home. The stories were funny enough, but encouraged by
Sukla’s spontaneous laughter and happiness, I tried to make the stories
longer and funnier, stretching my imagination in fabricating childishly
funny angles, scraping the bottom of my rather dubious creative talent.
It was happy going, for Sukla was always ready to laugh. She was
indeed returning to her childhood steadily.

116. By late 2005 Sukla needed assistance to walk even for a short distance
inside the house. But if we used the normal Bengali bidding ‘Chalo’,
she could not always respond. But the moment we sang the Bengali
nursery rhyme ‘Hati, hati pai, pai, shona hati, bari jai’ she responded
by putting her foot forward and kept moving as we sang to her.
Similarly, during our spell of ‘baby talk’, if I asked her to kiss my
 cheek using the normal ‘Chumu dao’ in Bengali, she did not respond.
But if I said ‘Hami dao’, a baby expression she promptly responded.
After the withdrawal of her sedative and sleeping pills in 2005, Sukla
sometimes delayed going to sleep at night. I then used to pat her,
singing the only lullaby I knew, which Sukla herself used to sing while
putting our children to bed and way back in her childhood her mother
or her grandmother had sung to her. She would invariably close her
eyes a even if she were not sleeping, or she would fall asleep very
soon, This confirmed that Sukla’s memory was receding since
Alzheimer’s struck her in 1994 and now what little was left of her
memory was that of thr first two to three years of her childhood.

117. Sukla continued to be cheerful and smiling, when awake. She could
still focus her eyes as if in recognition. If we made any odd movement
or resorted to some baby talk or the attendants sang and danced Sukla
would smile, giggle or burst into laughter, totally open hearted and
disarming. I felt she was perhaps in another world, having lost the best
part of her worldly memory. With the memory of the life we have
lived, one acquires worldly experience, condensed into wisdom which
in turn, dictates our behavioural pattern – good, bad or indifferent –
along with varying degrees of hypocrisy, pretensions, duplicity double
standards and so on. Sukla, I realised, was not saddled with such a
baggage of memories. She could therefore be serene, peaceful and
divine like ‘God’s own child’! She perhaps now had only a bit of pure
and uncomplicated childhood memory which would also unfortunately
disappear in the near future. Earlier I had a mounting sense of loss
when I first realised that she no longer knew me as her partner of the
last 50 years. She perhaps knew me now as someone likeable
dependable and a safe haven. Since the year 2005 I realised that slowly
and steadily, Sukla my wife had gone out of my life, but as if like a
gift from God she had returned as my great granddaughter, cheerful,
charming, radiating warmth and loveable as ever. Realising that this
wonderful association of ours would not last long, I looked forward to
enjoying every moment of her wakeful hours-smiling, laughing,
making monosyllabic but coherent responses, which made my day.
From time to time while walking her back from the balcony to the
living room or during her sponging after she had wet the bed, I held
her close like a baby. She used to be very happy. She could no longer
speak but she made a gurgling sound, which said it all. Her happiness
and warmth was infectious. The whole house appeared to resonate
with her happiness. Sukla in her terminal stage was indeed returning to
the family in ample measure, the peace and happiness, she had
unknowingly been forced to take away in those very stressful days of
her intense behavioural disorder. In fact, she now contributed to the
quality of life of the whole family in a big way!
118. Gradually one stepped into the year 2006. Sukla continued to
deteriorate slowly but steadily. The indications were gradual reduction
of her wakeful hours, occasional lapse of response and diffused
focussing. So I cling on to the few wakeful hours that she is awake and
responding to us. She still responds sometimes, quite coherently in
monosyllables though.

Joy and his family were visiting us for a few days. Sukla’s eyes resting
on her 5 year old twin grandsons lit up and she looked back at them again
and again. I was sure she did not know who they were. It was perhaps the
normal attraction of two little children trying to react with her. One
evening I was recounting some hilarious anecdote to our daughter–in-law
Shivani. As I came to the punch line, Sukla simultaneously with Shivani
burst into laughter. This was a great surprise. But Shivani, quite well
versed with the spiritual aspect of life, made her point again. She believed
that Alzheimer’s might have destroyed Sukla’s brain which was only a
physical part of the body, but she felt that the soul was indestructible and
when in rare moments Sukla tunes in, she can take in everything
happening around her. I had always let it pass at that, till the 20th of Feb,
2006 which was our 50th marriage anniversary. It was a low key affair.
Sukla’s sisters had dropped by that evening with some flowers garlands
and a cake. Sukla went through the ritual, when her hands were guided to
the traditional exchange of garlands and of cutting the anniversary cake.
She was quite cheerful throughout even when facing the camera, but there
was no indication of her understanding the significance of the day. Just as
an idea we walked hand in hand and stood in front of the full length
mirror. Looking at our image with garlands, her eyes at once lit up and we
continued looking into each others eyes in the mirror. In a while, as I
gestured her to move, she resisted as if wanting to stand there endlessly,
transfixed and spell bound. She appeared to understand that it was much
more than just another passing event and desperately wanted to hold on to
those moments. After a few minutes her physical weakness took over, her
focus was diffused, her eyes wavered and the spell was broken. But it left
a lasting belief that Sukla knew exactly what it was all about. Was it her
indestructible soul tuning in at that rare moment of the memory of one of
the most memorable events in her life, crashing through the LIFO barrier
to survive much longer than expected? I shall never know. But then, it
hardly mattered, as all the same, I had that rare feeling of reliving the
moment together.

119. We passed the rest of the year 2006 without any major setback. She
had just one attack of seizure. Though it lasted for a short duration
only, Sukla remained exhausted for the next two days. She continued
to be cheerful when awake. But there was one disturbing aspect.
Sukla’s wakeful hours were reducing steadily and by the time we
stepped into the year 2007, she was awake only for about two hours a
 day in a few short spells. I realised that Sukla was now sleeping just
like a 2-3 month old child, for 22-23 hours a day. As her brain
continued to be destroyed, along with her receding memory all other
activities subsided. The other aspect requiring our attention was her
weight. She had steadily gained eight kgs. and by the end of 2006, had
crossed the 60 kg mark. This was her allowable upper limit of weight.
As it is, the disease can cause obesity. Also her body was becoming
stiff, as is usual for Alzheimer’s patients, though at a very slow rate
due to continued physiotherapy. So it was necessary to keep her
weight ideally around 54-55 kgs or at least under 60 kgs., to make it
easier for the attendants to handle her.
We decided to stop giving her calorie rich ‘Berry blast’ and
subsequently, reduced a little protein powder as well. In spite of this
she continued to gain weight, although at a slower rate, and by the end
of 2007, she crossed the 65kg mark. That is when we were compelled
to reduce her normal food intake, replacing it with fruits. Her weight
was then arrested at 66 kgs. and it remained so for 2-3 months, then
showed a downward trend only from April 2008, perhaps due to an
increasing rate of decay, natural at this stage. Finally her weight
stabilized to around 60-61 kgs. by July 2008.

120. Sukla continued to manifest a steady decline of her wakeful hours

through the year 2008 and by the middle of the year, it was hardly a
little over an hour or so in a day, split into several short spells. I looked
forward to these rare moments as she, on waking up, invariably
rewarded us with the captivating smile of a child, exposing her single
upper tooth! Sometimes I have to leave home in the morning to attend
meetings or interactive sessions of a carer support group, organised by
the ARDSI Calcutta. Most of the day I carry the memory of her
morning smiles in plentiful and share my thoughts with the others
almost singing through the day with a sense of fulfilment. The day I
leave her in deep slumber, a nagging emptiness and apprehension
gnaws through me.

121. The years 2007-2008 saw some significant milestones for ARDSI,
Calcutta Chapter. In early 2007, the Chapter finally moved into their
own premises at 15/3C Naskarpara Lane, Kolkata 31 from the house of
our founder member Mrs. Shefali Chowdhury. No amount of gratitude
and appreciation could be adequate for the selfless service by her to
ensure the survival and growth of the Chapter.

The second milestone was regarding the Dementia Day Care and
Research Centre. As a family carer, June 25th 2008 was a special day for
me as on that day, we met for the first time at Ankur, located at P-5,
Regent Estate, Jadavpur ,Kolkata 32, which would eventually house our
long cherished first Dementia Day care centre. As we approached the
 garden leading to the open and spacious premises of Ankur in the quiet
and serene environment of the Regent Estate, my spirits lifted. It was just
the right place for a Day care centre for the people with Dementia. And
the fact that all the facilities and specialist support would be available
under one roof to look after one’s dearest one suffering from Alzheimer’s
or other kinds of dementia was indeed reassuring.

122. We were at ANKUR on that day for an interactive session with the
family carers and representatives of ARDSI, on the functioning of the
proposed Day Care centre and a participative venture by both ARDSI
Kolkata and the family carers. While providing for the family carer,
necessary guidance for the right approach to care giving, the much
needed relief and timely morale boosting, the day care centre would be
equipped to provide expert care, brain stimulating games and other
activities, tailor made, to suit the personality profile of the person in
order to sustain his or her quality of life longer.

123. As I sat through the interactive session listening to the family carers
narration of the frustrating and stressful experience of looking after
their dear ones, my mind went back to the late nineties of the last
millennium. It seemed so far back, but was still hauntingly fresh in my
mind, when I too was groping frantically to find the right way of
taking care of Sukla, who had been steadily deteriorating since 1994. I
was then totally unaware of the essence of care giving, which was to
make the person feel that he or she was wanted by the family and was
still participating in the main stream of family activities i.e. in short
continuing to retain one’s self image and dignity unaltered for as long
as possible. Unfortunately, as I had mentioned earlier, I continued to
destroy the quality of her life by, amongst other things, my most
absurd effort to correct her lapses in the belief that she would maintain
her cognitive prowess!

124. Our Dementia Day Care Centre was finally opened for service on July
28th, 2008. It would have been most befitting, if Mrs. Shefali
Choudhury, our founder member and an outstanding family carer had
inaugurated the centre. But being well into her nineties, she was not
able to grace the occasion and so this very proud privilege devolved on
me – an experience emotionally overwhelming for me. Sukla is now in
her terminal stage, totally oblivious of all those around her and no
longer requiring any specialised care. But how I wish that in the
nineties when I needed it the most, Calcutta had had a Dementia Day
Care centre equipped and staffed as at the Ankur centre, for Sukla to
spend the day in this serene and stimulating environment under the
care of specialists, providing me the much needed break from the
stressful 24 x 7 routine, and helping me to develop the right mindset
and positive attitude early enough, to prolong the quality of life for
 Sukla much longer than I did. What I could not get for Sukla, is now
available for the family carers and their dearest ones suffering from
Dementia. Having been a family carer for the last decade and a half, I
feel that the care giving at home, needs to be supplemented by centre-
based expert care giving to ensure better care of the person suffering
from Dementia and to provide timely guidance, much-needed relief
and morale boosting for the family carer, which in turn should improve
the quality of care giving at home.

125. As we are nearing the end of 2008, Sukla’s wakeful hours have
reduced to around an hour only in 2 to 3 spells in a day and it
continues to reduce. For a couple of days she was hardly awake. She
did not respond to us at all, her eyes seldom opened, leave alone focus.
Her face reflected deep slumber. Feeding became difficult. But
mercifully, she responds to food in the form of a paste, when put into
her mouth. She haltingly chews and swallows, but the process takes an
hour. I was alarmed. No clear road map was available to me for
Sukla’s journey through this terminal stage, but as a general pattern, I
was told that since Sukla was already in the 14th year of her ailment,
she would, in the not too distant future, go into a more passive stage or
a coma, requiring feeding by a rice tube of in the worst case scenario,
surgical intervention may be required to feed her. On the 14th of Nov.
2008 when Sukla went into deep slumber again, I thought Sukla might
be proceeding towards that stage. I could not make eye contact with
her for over 60 hours. I felt defeated. But on the 17th morning, she
woke up smiling, her eyes bright and focussed again. I heaved a sigh
of relief, as if it was another lease of life for me too. I am aware that
Sukla will now alternate between semi-coma to a wakeful state for
sometime and one day she might not wake up to smile again. Care
giving for me has been a series of shocks and trauma, interspersed
with pleasant and happy moments. Sooner or later, if I am still around
I will have to face the final tremor of the shock ending my journey of
care-giving and I have no choice but to brace up for it.

126. Finally, looking back, since the time Sukla was struck with
Alzheimer’s it has been a roller coaster journey over the past decade
and a half. Initially I was groping in ignorance, through an uncharted
course, then I was pushed into an intensely stressful, fire-fighting and
finally I eased into the peaceful terminal stage with some pleasant
spells with Sukla. Learning through my mistakes, improvising some
home grown therapies to provide some relief for me, and adopting a
positive attitude to the extent possible, did help up to a limit, but I now
realise that the main sustaining force for my emotional survival
through this period has been the constant flow of motivation,
unwittingly provided by friends, by relatives, by our children and by
professionals in the field from time to time. Right from the beginning,
in my eagerness to keep Sukla in the mainstream in meeting friends
and relatives, attending parties, social functions, travelling and visiting
people or walking together hand in hand for miles, there had been a
spontaneous and lavish encouragement from all around us. Even
strangers we met in our daily walks stopped us to express their
appreciation. Perhaps in normal course, an elderly person nearing
eighty years of age, walking hand in hand with his spouse, in her early
seventies, is not an usual sight. As for me, I used to take her for walks
as a part of my exposure therapy to begin with; it continued as a
diversion therapy during her severe stage; and lastly our daily walks
was to help her maintain mobility for as long as possible.

I have been associated with community activities in the Block we

stay in, in Salt Lake. In recognition of my contribution, the Citizen
Council of the Block announced some award for me but half the
citation for the award, quite embarrassingly was for being a role model
in taking care of one’s ailing spouse. More importantly, professionals
like the President, Honorary Secretary and others from the ARDSI
Kolkata Chapter have been showing unreserved appreciation and
encouragement for my effort to keep Sukla going. Without hesitation, I
must reiterate that their encouragement served as a strong motivation
for me, ensuring my emotional survival through these years. No doubt
there have been peaks and troughs along the way, but rather than
ending up as a struggling spouse on the verge of breakdown, I could
stride through the crises one after another, as a proud achiever in my
mission so far.
My deepest gratitude to all who helped me to keep going.