A World Within

by Minakshi Chaudhry

  I can imagine how very difficult it must be for Dadoo but what can I do to help? There has to be some way, a proper way to handle him. I never thought that this illness would be so bad but now I realize that he was right – losing your mind is the biggest and the worst disease in the world because no will power can make you go through it. When the brain doesn’t work the question of having a will power doesn’t arise. Will power is only with regard to circumstances and physical ailments, without a mind will is nill.

  I always believed that losing your memory couldn’t be so bad because there is no physical pain; you have people to look after you, to give you proper food, to bathe you, to hug and love you, to treat you as the most precious person on earth; it doesn’t matter if you forget the name of places, of things or for that matter your wife, your children because at least they know who you are. But how wrong I was – losing one’s mind is so difficult, physical pain is nothing in comparison to it. I just want to close my eyes and open them only when everything is in place – either my father has forgotten every single detail; or he is no longer carrying this burden of a useless body.

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  1 December 2010

  He has started crying regularly now; mostly in front of Mamma and no one else. And this sobbing period usually happens early in the morning. How helpless a man becomes?

  When I asked Mamma does he say anything, she nodded, ‘He says, “I am no more a human being now. I have lost everything, my mind is no more. I don’t think I will live for long, we should call our children.”’

  My heart fills with pain and the ache is so deep, it hurts but I too am helpless. It is getting difficult to explain things to him. Normality is losing itself in the folds of this disease. Oh, when will this transitional phase be over – the stage in which an intelligent man gets converted to an incapable one. How crude this sounds but isn’t it a fact? Many times I wonder how very agonizing it must be for him as he sees himself slipping away.

  It is natural for him to be angry, irritable and not to focus on any materialistic thing or what we call means to stay busy – TV, books, newspapers, yoga, music, films, etc. He cares a damn because there is something so strong which keeps him busy analyzing his mind. Sometimes he asks questions, he wants to know what is happening inside his brain but alas we have no answers.

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  29 December 2010

  Earlier he would cry only in Mamma’s presence and she would tell us about it. But now it is open, all the reserve, the dignity that he has is dwindling as he breaks down in front of his children. I can understand his agony, the agony of a parent.

  Oh, how I curse the perversity of this disease as he breaks down many times during the day. Everything that made him a whole person is leaving him bit by bit. If you are able to divert his attention, the weeping stops, he forgets his worries but you are stuck in his despondent mood and get bogged down by the strain.

  Every patient with dementia is different, that is what the doctors say, my Dadoo, because of his natural energy, is one of the worst cases to handle. When he is hyper-active, he opens all the suitcases, searches all the cupboards and looks even under the bed to locate his files! All the time he blabbers – I am gone, I have lost everything, what will happen to me? We can’t match his pace as he runs up and down the stairs and continuously walks from one room to the other. He talks throughout the night and barely sleeps.

  When you see him from a distance, he looks completely normal. It is when you start talking to him that you realize how lost he is. A bright smile lights up his face only when he sees one of his children whom he still recognizes.

  He loses interest in everything from his precious plants to his friends, to the market and to food. The only thing that he still remembers is stress, bombarding questions on what is wrong, what will happen and how will it be done, it drives me crazy. Later I feel guilty for my impatience but it is so difficult listening to him pretentiously or casually.

  Despite his failing memory he feels that he is a burden on his wife and children. He keeps saying, ‘Forget about me, there is nothing left in me now, it is better to die.’ His love for us sometimes wears us down.

  There is no check on his emotions. Anger, fear, happiness and despair tumble over each other. He shifts gears suddenly and you are caught in a tornado of emotions trying to adjust your mental equilibrium.

  This pathetic condition seeps into you unconsciously. Howsoever you may try to reason you cannot grow out of this sinking feeling: What he was and what has he become? Oh! Why?

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  We humans are so strange. We think that everything bad like a disease and death will strike not us but others. Or is this Nature’s mechanism to make us escape the agony before something actually becomes a reality.

  Off and on I had read about Alzheimer’s but it never occurred to me that this harrowing disease would strike my father. My grandmother too had suffered memory loss. No one took her to the hospital. That time everyone in the family thought that it was the side-effect of some medicine given to her by a quack when she had gone into a deep shock following a robbery in our house. However, she lived in a joint family and it was easier to manage her.

  Dadi was always so much fun; she was both an adult and a child at the same time and was more of a friend to us than a grandmother. We would share our secrets with her; and often ask for her advice. But dementia was slowly spreading its roots in her brain; she would often forget what we were discussing. But all this did not trouble us, may be because we had not seen her transformation from her earlier self to this individual who would say, ‘I want to go home. Why am I staying with these people, who are these people?’

  She had forgotten who her sons, daughters, grandchildren were. But she had not forgotten her husband whom she respectfully called Lala-ji. Oh how much fun we used to have with her. We would always make up imaginary wishes and seek our Dadi’s help – from seeking permission to marry to fulfilling little desires like eating out in a restaurant, buying new pair of shoes and going for a holiday. We would ask her to go and say to our grandfather ‘I love you’, we had become bolder, knowing that by the time she reached him she would forget what she was to say. Amidst giggles and guffaws we would all watch her going to him and then just saying, ‘Aur theek ho? Maine kuch kehna tha par bhool gayi [Are you all right? I wanted to say something but I forgot].’

  Frankly for us children this was not a disease and neither did it appear to be something as heart wrenching, as it is now. The reasons could be multiple. Now it is a relationship of a parent and an adult child. Dadi lived inside the house surrounded by people in a joint family and she was not the bread winner of the family. Hers was a secure world where she did not have to take major decisions herself. With Dadoo it is different, being head of the family and the eldest male in the extended family he has always been the main force. And losing control of his thoughts and actions is more devastating for him.

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  Dementia is a death sentence in its worst form. Once the verdict is announced, there is no appeal. Does it just happen or is it God’s doing? Is it His punishment? But then what has my Dadoo done to deserve this? He has harmed no one, he is not a corrupt person, he is a good husband and a good father.

  Then, why?

  I could never gauge the depth of destruction caused by dementia: it has no cure and this brings about endless hopelessness. Moreover, it also shows how selfish and cynical one becomes.

  It makes you lose your cool: You are filled with guilt, remorse and loathe; and questions arise about your own integrity towards your loved ones.

  My father is my hero, he made me what I am today. I could not have started writing without his support and encouragement. I have been showered with love, affection, security and freedom – both of expression and otherwise – and I have always felt proud of my dad. A father who was my friend, with whom I could go for picnics, shopping, do cooking, talk politics and even philosophy. I would sit for hours with him discussing worldly affairs, and exchan
ging novels and their stories.

  But now things have changed, we do not discuss much. He can’t because of his disease, I can’t because of my limitations. I always thought that I would love Dadoo till death and nothing would ever change that. But it does. I get a headache if I sit with him for long and it really fills me with guilt that I am helpless and can do nothing for the man who has done everything for me.

  I think the disease had already started to take him in its fold about five or six years back. He succeeded in not showing what was happening to him, but more than that we failed to notice that he was becoming sick. We termed it as mere memory loss. But it is not just a simple memory failure. You lose your ability to differentiate between things, making up your mind becomes a stressful exercise. You can no longer co-relate and organize and gradually stop comprehending things altogether. A couple of years back Dadoo was obsessed with a few things which, every time when we went to meet him, he would stress upon. We thought he was becoming cynical or he was bored, or it had become a habit of his to feed on stress. May be, if we had started the treatment then, its growth could have been arrested.

  One of the topics that he used to talk about was his papers and files. All his life being meticulous, organized and planned, he had kept every paper: income tax; his retirement papers; his property details, even those which were sold some twenty years back; his children’s PAN numbers; PPF accounts; FDs; bills; house taxes; and court cases. But then this beast attacked and he started getting insecure that either his papers had got lost or somebody had misplaced them. He would sit for hours with his files writing things in his diary – duplicating financial stuff – but I just concluded that it was boredom and stress that made him do this. Recently I came across three or four such diaries, in which he had written account numbers, date of maturity and the PPF account details and so many other details of numbers and folios; but now they lay abandoned as there is no one to look at them.

  The second thing he concentrated on was Reader’s Digest subscription. He kept on writing to them regularly, buying books because one day he thought Vikram would win a prize. For nearly two years, it became an obsession with him and sometimes a matter of life and death if we did not read the letter from Reader’s Digest immediately. He must have spent more than forty thousand rupees on these books, and everyone in the family felt that they were cheating him and making him buy books so that he could move to the next stage of the lottery and the next and the next. Thankfully a year back Dadoo lost all interest and forgot all about it.

  The third thing that he paid attention to was property. From his initial days Dadoo had a knack of buying and selling land. This is how he made money, he was a financial wizard. Whatever little money he saved in Nigeria some thirty years ago was wisely invested into property. He would sell the property at the right time and buy more in return and this game of buying and selling would go on. Presently, he has become fanatic about these lands, their cost price, their market value, money invested by selling them, prospective buyers, their safety with regards to documentation, demarcation and subsequently fencing, barbing and caretaking.

  We had ignored these signals. In fact we had started getting irritated with him and counselled him to have a more positive outlook and lead a stress-free life. Several times he said that he forgets names, and people but we pooh-poohed him, insisting that we too would sometimes forget things. He would throw tantrums quite often and slowly I started noticing that he would call up and repeat things; but this too I ignored.

  For months he was paranoid about his throat. He went to numerous doctors for diagnosis. He took an avid interest in all the medicines related to throat and cough – on TV, in newspapers and on billboards. It was a chronic problem for Dadoo with no cure. We did not know then that having imaginary ailments is a symptom of dementia.

  Some four years back I had called up both my brothers and told them that there was something seriously wrong with Dadoo and that we had to take him to the doctor. He had told me that he had forgotten the name of sweets and vegetables like onions, ginger and potatoes. He said that when he went to shops his mind became blank and he could not remember the names of the things he wanted to buy, so he ended up pointing towards the things he could recognize.

  Both of them said that he was just depressed and had become an old cynical person, but of course that was not the case. And when I did take it seriously I could do nothing about it, because I had fallen ill and it took me two years to get cured.

  However, Vikram seriously contemplated quitting his job and coming back to take care of him since his condition was deteriorating. Whenever this was discussed before Dadoo, his reasonability would return with full force and he would say, ‘You don’t have to come, I will come and stay with you. This is not the right decision. You have a job to do.’ But whenever he did go to stay with Vikram for a month or so, it became torturous for Mamma since Dadoo could not go out because he wasn’t familiar with the ways in Chandigarh; and inside the house he would do nothing – no TV, no books, and after a few days he would start pestering Mamma to return. Thankfully Vikram got a sabbatical for two years to compile a coffee table book on culinary traditions in the Himalayas and came to stay with them in Solan.

  I vividly remember during this time his overwhelmingly affectionate greetings whenever any of us visited him. He would be so excited just like a child hugging and kissing us when we arrived; and would become extremely depressed and sad when we left. It burdened us with remorse. He had started getting obsessed with his children, their phone calls, their visits, their jobs. No one else mattered to him.

  I feel miserable when I recall that I failed to empathize with him. When he went into his spells of depression, instead of understanding him, I got angry and snapped at him. I asked him to stop being irrational and illogical and when I could not succeed I simply escaped. I just did not have the patience and energy.

  And then slowly he started saying, ‘Do not believe in me, I may be wrong, do not take me seriously.’ There was so much suffering when he said this. My Dadoo whom I loved the most had started withdrawing himself. He was always there for me but when he needed me to guide him in this chaos, I was not there mostly.

  He badly wanted to call up his lost friends. The more he called and talked about old times and invited them over, the more irritated Mamma got. She would say, ‘They have never called us, so why do you?’ The disease was urging him to link with his past. Perhaps he wanted to remind them that he was still alive. He wanted to connect, to get some assurance that he still knew some people who knew who he was. It was so important for him but we thought it was one of his idiosyncrasies.

  Will Dadoo become like Dadi, the cutie pie that she was but also the angry lady she would turn into on rare occasions. Chachi-ji took care of her day in and day out but she hated her the most. Of course, everyone knew that she was a helpless woman nevertheless I used to think many times why her hatred was focused only on chachi-ji. Now I have come to know that it was also the doing of this dreadful disease.

  Yes, Dadoo too is changing, his suspicious mind has started weaving stories against all of us. When he is pally with Vikram he talks against us, ‘Rohit and Rewa are very clever; they have left us. They will not do any of our work. We will have to do it ourselves, so let us forget them. You and I will join hands to finish the work.’ When I got to know this, I was disturbed but then I told myself that he was not well and his suspicions would increase many fold in the future.

  You don’t know how to react when he says, ‘Because I don’t remember now, you can make a fool of me. I am an old helpless man. Mera mazak udao, kuch bhi bolo, main kya kar sakta hoon [make fun of me or be mean to me, I can’t do anything]. Now I am no more the head of the family, so you can take decisions between yourselves. There is no need to ask me anything.’

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  Sometimes I wonder how Dadoo and Mamma think about each other.

  Mamma says that he always considered her semi-literate and did not share many thing
s with her. He was always willing to talk to his sons and daughters but not with her because he felt she would not understand.

  Wisdom is not related to educational degrees, she might not be educated but she has run the household. And she has seen the plight of educated people in all these years, their follies, vanities, their false pride and their frailties.

  She ‘learnt’ all her life, she learnt to live in a village; to live with educated people, who always talk about degrees and studies; to take care of the elders and how to raise the kids – what has all this been if not learning. She even picked up English in all these years, she understands most of the things when her children spoke in English and she too can converse with them in English. She never considered herself inferior, in any way whatsoever, to any educated person. But I am sure she always felt hurt when her husband made fun of her education.

  Mamma always said that Dadoo’s desire to acquire land, to invest wisely, bank accounts, fix deposits, shares and securities was a passion. This he has been doing since he was young. He could discuss these things for hours, this is what interested him; he talked about property, land, money and investments. May be this is connected to their marriage. He came from a village family and she belonged to an extremely rich family in Burma. Her father was one of the richest industrialists there, they had mines and he dealt in rubies, pearls and emeralds, they had ships and cars, and huge farms and orchards. He traded in southeast Asian sea. Theirs was a palatial house with servants and maids. They had gardeners, caretakers, guards, watchmen, drivers, milkmen and other workers all around. The house was always buzzing with activity. Probably all this affected Dadoo and made him feel inferior. Did his hunger for money come because of this?