Immigrant Bengalis

Memory, Identity and Alzheimer's
Shyamal Sarkar

 My father lost his memory - we lost him before his demise.

When a virus enters and your computer goes haywire, all the information -- the names, identities, relationships and whereabouts of hundreds of people you know and know about, the album of a million pictures you have saved for decades, the documents of your euphoric moments and the distressing incidents of feuds as well as moments of your romances, your notes, plans and thoughts, numerous information you have gathered over the years from many sources – is wholly wiped out! Imagine how upset you will be! You would probably take your computer to a repair shop to drive away the witch from the system and start all over again from your backup.

If the virus makes the computer completely non-functional, and the computer doctor cannot fix the problem - what do we do? Just discard the machine and start all over again with a new one.

What should we do if it happens to a person who loses all the entire information from his memory like our computers and cannot replace it like we do with the new computers? There is no backup of human brains and the memories in them; each one is unique.

How alarmed and helpless will we be! When the memory is gone, a man becomes a computer shell without any function. Our memories are our identities, our trademarks – without own memory each of us is nobody, like a dead man walking.

When my father was an octogenarian, we began to notice the symptoms of serious dementia. What a shocking reality it was for us to note that his memory loss was gradual. We witnessed his mental alertness slipping away like the bright sunlight vanishing in the evening. At the beginning, he became withdrawn, and then he lost his speech and his look  became vague, as if we all were strangers to him. He did not ask for anything, nor responded to questions. He had a hard time following instructions. Slowly a loving, caring, active and responsive man became mute and unresponsive.

None of us knew what to do and how to react. When a person does not recognize even the spouse and children, does not know his whereabouts, which room he sleeps in, where the toilet is, does not know whether he is dressed or bare-bodied, or even if he is hungry or fed. Alzheimer’s disease and dementia both can turn a human being into a robot, moving without any emotion or intelligence, the person remains alive but is lost among us.

My brother was a professor of medicine. He knew Alzheimer disease (AD) and its symptoms and outcomes. There was no treatment to cure or stop the progression of AD -- just a few drugs that could temporarily slow the worsening of symptoms.

Unlike my family members in India who went through many frustrations on a daily basis, I was not an everyday caregiver for my father. Still I was deeply affected emotionally  every time I thought "my father will not recognize me anymore".

My father did not survive long after the detection of AD.

Another father I heard about almost lost his life because of AD. He was the father of Raymond Alamo. Ray was a manager in a pharmaceutical company I worked for. Ray’s father was living in an assisted living home for old people.

One day he was not found in the building. He had gone out unnoticed when the outside gate was opened accidentally. He did not know where he was going and how to come back; he roamed the streets aimlessly like a vagabond.

Ray had to cancel a planned trip with the news and rushed back. He called all his family members and father’s friends, hoping he might have showed up in one of their places. But how could he? He had forgotten everything by that time, including the streets he had walked all of his life.

After two days the police located him a few miles away, frail and dehydrated.

Imagine what kind of stress Ray’s family went through.  No one knew how his father survived in the New York cold and without food and water for two days.

"What a shocking reality it was for us that his memory loss was a gradual deterioration. He was a singer before; we saw how hard he had to struggle to speak a word. He looked at us helplessly. Perhaps he was trying to give us the message: can anyone help me get any kind of relief? He slowly forgot the language, and then stopped talking. He stopped meeting people and kept on looking outside through the windows hour after hour. I visited him every Sunday; we sat for hours, I talked all along and he didn’t pay any attention. After some time, he walked away while I was talking – as if I was not there ", Ray shared his painful memories with teary eyes.

I was very sorry for Ray and his father; it was like reading a sad story. Though I felt very bad listening to Ray, AD had not touched me or my family - until it affected my father.

Ray introduced me to Dr. Kishore  Arora at Rockland Psychiatric Center (RPC), a staff psychiatrist of the Center for a decade.

RPC was one of the largest mental health institutions in the State of New York. When I saw a pair of worn wrought iron gates, I didn’t realize that these gates opened into a massive, 600 acre asylum for mental patients built in 1931. Once RPC was considered one of the best-planned psychiatric hospitals in the world with over 5000 beds. I saw some patients were milling around in the halls and porches while others were meeting physicians at the other end of the long corridors. There were large rooms  on both sides of the hallway, populated with patients having various mental illnesses. Some of them were violent and kept behind the grille doors but most of them were docile and zombie-like. They looked sad or expressionless or listless with vague looks. Though many of them were physically fine, mentally they were not there. The non-violent patients often used to be in the corridor, on wheel chairs.

The expressionless faces of the RPC patients did not register in my head, never gave me any sleepless night, until the problem arose in the family, inside our home, with my father.

Dr. Arora knew AD very well and was considered an expert in Alzheimer’s disease and dementia; I had heard about Alzheimer’s disease but I did not know much about it.

Dr. Arora mentioned that 15%-18% of the inmates were presumed to be mentally ill but actually had Alzheimer’s disease --  a disease involving memory loss, which is not necessarily a psychiatric case.

Research on memory has revealed some interesting information: “Memory is like a digital image; it never gets tarnished. Once it is recorded, it will remain there till the  patient dies.”

Then what happens in memory loss?

It is the medium through which the memory is accessed that gets foggier to opaque.

In 1910, Dr. Emil Kraepelin, a German psychiatrist who worked with Dr. Elois Alzheimer, first mentioned ‘Alzheimer’s disease’.

The case history of one of the first patients of Alzheimer’s diease still creates interest in many people

Date: November 26, 1901

Patient sits on the bed with a helpless expression.

Q: What is your name?  A: Auguste

Q: What is your husband’s name? A: Auguste

Q: Your husband! A: Ah, my husband (then she looks as if she didn’t understand the question)

Q: Are you married? A: To Auguste Mrs.

At lunch she was eating cauliflower and pork

Q: What are you eating? A: Spinach

She always speaks about twins in between.

When asked to write Auguste D., she tries to write Mrs. A and forgets the rest.

In the evening her spontaneous speech is full of paraphrases, derailments and perseverations.

End of the case history.

“Many time schizophrenia was misdiagnosed with the early signs of dementia at the age of mid-forties”, Dr. Arora mentioned.

“Schizophrenia and Alzheimer’s are both diseases of the brain that can cause dramatic symptoms. They are different in many ways, but there are some similarities. Both can be associated with psychotic symptoms. That is, they can include hallucinations or delusions. Hallucinations are false sensory perceptions, which can involve someone believing they are seeing things, hearing things, touching things, or smelling things, but these perceptions are not real. Delusions are fixed false beliefs, such as someone believing they are being followed, believing they are not human or believing they have a terminal illness, though there is nothing to support the accuracy of the beliefs. Furthermore, both diseases can interfere with thinking.”

Runu-da, one of my cousins, had symptoms of schizophrenia and AD as Dr Arora had said.

Runu-da, was brought to our home in Calcutta for his mental treatment. He was a fun loving brother before, though he had delusions of ‘seeing things’. Otherwise he was a quiet person, sitting alone in a corner.

I accompanied Runu-da for his electroshock treatments to the Medical College Hospital. When I heard that he would get electric shock, I became concerned, thinking about the violent reactions of condemned prisoners in electric chair.

Runu-da went into stupor after the shocks; he was semiconscious and groggy; his eyes were listlessly open; his tongue was hanging out from one side of his frothy mouth. It was an awful sight. I was alone, confused, and did not know how to react. I was distressed too.

Surprisingly, after one dozen electric shock treatments, his ailment did improve, and he became a normal person as before. After that, I became a believer of electric shock therapy.

Unfortunately, my euphoria was short-lived. Runu-da was brought back to Calcutta again in a few months with a relapse of the same mental illness. This time he was advised to be institutionalized for treatments, and he was taken to the Ranchi Mental Hospital.

It was a very sad moment, leaving a loving brother in a mental institution for a long time. We didn’t say good bye. He went inside slowly under the white arch of a building which looked like jail cells without grille doors. He did not look back.

Incidentally a famous Bengali rebel poet, Kazi Nazrul Islam, had also spent some time  in an earlier era in the same institution for his memory loss treatment.

I did not know what kind of treatment Runu-da went through in Ranchi for a couple of decades. His schizophrenia was controlled with medications, but he was not the same Runu-da as before.  He lost his memory, and he could not even recognize me; he was alive among us but he was not there!

This ordeal of Runu-da had touched me tremendously for a long time; still it did not affect me that much until I found my father having memory loss.

Some researchers have observed a greater prevalence of AD among blue-collar workers who did not have school education beyond  sixth grade. Then I found the list of famous and successful people -- Norman Rockwell, Charlton Heston, Charles Bronson, Atal Bihari Vajpayee, George Fernandez, Peter Falk, Rita Hayworth, and Ronald Regan -- they all were Alzheimer victims. I suppose that the human brain, that amazing machine, does not follow any particular pattern any time and evolves in different directions relentlessly.

Interestingly, the debilitating condition of Ronald Reagan and the insistence of his wife, Nancy Reagan, compelled the Republican Party to become softer on stem cell research. Stem cell research has shown some promise to alleviate the condition of AD. The plaque forming proteins inside the brain interfere with the cognitive and connecting nerve cells in AD.

The first time I saw a case of dementia was in 1970 when I had a minor surgery, fixing a deviated septum of my nose in the student ward of the Calcutta Medical College.  I was not confined to bed; I moved around meeting young student patients in the ward. I saw that a student had brain concussion after falling from a motorcycle while riding without a helmet. He lost his memory and could not recognize his family and friends. His broken bones were plastered and his head was covered with white bandages. He used to chant only a random word continuously. I was sad to see the memory loss of a student; later I learned that the student had amnesia, a temporary loss of memory; unlike AD and dementia, he had a good chance of recovery.

This incident reminded me of the dramatic reversal of memory loss, amnesia, which was the story in the popular Bengali movie, “Harano Sur”, where Uttam Kumar regained his memory after listening to a song, “Tumi Je Amar”, which triggered his old memory to reconnect,

One of our New York neighbors was Girish Shah.  His wife, Neelamben, was frustrated and annoyed with her mother-in-law who used to complain all the time; even just after finishing her dinner she would say that Neelamben did not feed her all day. This incident was not a typical feud between mother and daughter-in-law; her mother-in-law had AD like millions of elderly people who were not diagnosed and counted for.

The incident of dementia and AD is much more widespread than we hear about. There are over five million cases of this patient group in the US alone. The most affected group of people tied with AD patients are the caregivers. Often the family members, particularly the spouses, become the full time caregivers. Beside care giving which needs heavy-duty physical work, caregivers often sacrifice their careers, social lives; and many of them become worn-out and depressed. In other words, they are the passive and collateral victims of this dreadful disease which does not offer any hope of recovery. Indirectly the total number of affected people becomes ten million: five million patients and five million caregivers.

Though there is no specific treatment for AD some research scientists have found that the implantation of stem cells in the patients' brains tend to help the re-growth of the affected nerve cells. However, the challenge has been implanting the stem cells to the target areas in the brain mass.

My father’s memory loss was not diagnosed categorically as AD or dementia. The symptoms were noticed following the radiation
therapy on his scalp for treating a rare form of skin cancer. He did not survive long after the radiation treatment and he passed away due to other metabolic disease complications. Perhaps, radiation had damaged his brain cells; perhaps he contracted AD concurrently.

Though the diagnosis was inconclusive still the fact remains that he had memory loss, and we had to face the torments of caregivers of Alzheimer’s disease.

Let me conclude with two commonly held myths about AD.

Myth: Alzheimer’s disease is not fatal.

Reality: Alzheimer's disease has no survivors. It destroys brain cells and causes memory changes, erratic behaviors and loss of bodily functions. It slowly and painfully takes away a person's identity, the ability to connect with others, to think, eat, talk, walk and find his or her way home.

Myth: Only older people get Alzheimer's disease

Realty: Alzheimer's disease can strike people in their 50s, 40s and even 30s. This is called “younger-onset Alzheimer's”. It is estimated that there are 200,000 people younger than age 65 with this version of Alzheimer’s disease currently living in the US.

(Posted February 1, 2016)

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Comments received from Pronoy C. on Feb 2, 2016:
"Good collection. Enjoyed reading them all. .. Liked Shyamal's article. It is informative and very touching."

Comments received from Prodeep M. on Feb 13, 2016:
"Lot of good information in Shyamal's article, well written. Is Stem cell research anywhere close to finding a cure or at least slow the progress down?"