Authors: Minakshi Chaudhry
After that, every now and then he showed me his diary that he had maintained for years and asked me to tell him about the people and few events recorded there. He just did not know who they were and why he had written their telephone numbers. This was so tough for us to explain because we ourselves did not know most of these persons.
A few years back he had started telling us that he forgets names. He would tell us that he forgot the names of vegetables in the market and had to gesture to the shopkeeper to make him understand what he wanted. He said that though the name was on the tip of his tongue yet it eluded him. We asked him to calm down and said that he would recall it later. We thought he was needlessly taking a lot of stress and that it was no big deal to forget things occasionally. It never occurred to us that it was the beginning of a painful process.
Now he just blankly stares at those names and numbers in his diaries and telephone directory, not knowing who or what those symbols mean. These are not only a mystery for him but a painful reminder that once he knew what these meant and the utter horror of the catastrophe they may lead to.
28 October 2010
Dadoo comes to me with an article published in the
Indian Express
on memory loss and brain haemorrhage. It says that one reason for this could be deficiency of Vitamin B-12. He wants me to read it.
He looks at me. ‘This article is on me. Everything written here is what I feel. This Alzheimer’s means memory loss,
dimag ki bimari
[illness of the mind].’
I am quiet.
‘May be I have vitamin deficiency,’ he says hopefully.
‘We will get the test done,’ I tell him lovingly. I do not want to upset him by telling that he is already taking B-12 injections since a couple of weeks.
‘Look, have you read this? Everything here relates to me, vitamin deficiency, Alzheimer’s, weakness, old age, all symptoms are mine,’ he says with a tremble. I take the article from his hands.
‘No, no, I need this cutting, I will show it to the doctor,’ he murmurs unconsciously.
‘So will I,’ I assure him.
‘Tell him that I have three problems: itching all over body, gas in stomach and memory loss. Rest is all fine.’
I nod.
‘Will they do all tests? Will the tests tell everything? Is there a complete test for brain?’
I nod again.
‘Then it is fine. Let us get the tests done and then we will get to know.’
‘Yes, Dadoo.’
He clutches his head with both his hands, ‘This is where everything is wrong, all is wrong inside this head. I have to show this,’ he mumbles pitifully.
20 November 2010
Things are going from bad to worse. I have been in Solan for the last five days and frankly I could not bear the agony my Dadoo is going through; the raw pain, the wilderness in his eyes makes my heart squeeze and all of us have become a bunch of liars.
It was so torturous watching him from six in the morning till ten at night: It must have been extremely frightening for him – the flashes of some specific memory and the muddled up logic in his mind, the anger and the frustration of not knowing what is happening. Can I bear any more?
He has now started beating himself up; the more angry he gets the more he hits himself and it has become so difficult for us to handle him. He gets so angry with Vikram as if he hates him, but after a while the guilt later takes over, he cries, begs for forgiveness and the remorse eats him up.
He curses Vikram and Mamma, and has started saying that he will run away from the house. For the first time he told Rohit that a power of attorney should be made and he would transfer all his powers to Vikram and Mamma and he would leave, ‘I am going mad, there is nothing left in me, I am a useless man, you should all carry on now. I can give no advice and I can no longer take care of you. You should all forget me.’ After this outburst he is all buttoned up. But then his mood shifts like a pendulum and again he enquires about land, about money and then again his mood shifts and he gets angry telling us that we no longer take his advice.
He keeps on asking, ‘Why wasn’t I told about … Is it because I am no more important?’ and then his mood once again shifts into depression.
Mamma and Vikram are having a tough time; frankly we don’t know how to handle him. Everything is being shattered and there is helplessness around, despite our best efforts. Rohit has advised that we take the help of the Internet and gather more information on how to handle patients suffering from this disease.
At times he keeps on blabbering and asking the same things repeatedly but when you patiently try to make him understand or for that matter advise him not to take stress, he just ignores you. With him, during these periods, nothing registers. There is so much anger in him that it makes me scare stiff. It takes hours for Vikram and Mamma to make him eat something and take medicine. It is so heart-rending to see an independent man cry like this.
He is going through a series of emotions – suspicion, anger, hopelessness, guilt, pity, escapism, weeping bouts and then in the end helplessness. Life is so unbelievable.
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.
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.
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?
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.
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 exchanging 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.