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Alzheimer’s and Amma

By Nishi Pulugurtha

Six and half years ago, my mother was diagnosed with Alzheimer’s disease. I had surely heard of Alzheimer’s disease and dementia before that. I knew that it was all about memory loss. What I did not know was the immense amount of changes it would bring in Amma and the way it would affect our lives. I still remember watching the film, Iris, based on the British novelist, Iris Murdoch, who had Alzheimer’s disease. The film, based on the author, literary critic, and Oxford Professor, John Bayley’s memoir, Elegy for Iris (1999), speaks about Bayley’s marriage to Iris Murdoch and refers to the way Alzheimer’s brought changes in her. The film was to me, then, about an author whose works I had read. The film revealed the way the novelist had problems with words, signs that her cognitive powers were being affected. It was poignant the way someone whose life was all about words suddenly has problems with them. My companion that day when I went to watch the film was Amma. Little did we realize that what we saw on screen that day at Nandan would become so much a part of our lives.

Towards the latter part of 2010, Amma was diagnosed with Alzheimer’s disease. There were no signs to tell me that something was wrong with her. She used to repeat things and, when pointed out, she always said that this was because she was growing old. There was nothing amiss in her behaviour that we needed to pay heed to. On 8 November, 2010, Amma locked the house and went out. She went missing for 48 hours. We found her, thanks to a Good Samaritan. It was then that I came to know that this tendency to wander off was a sign that she had dementia. This was the first time that she did something like this. A series of diagnostic tests confirmed that she had the most dreaded form of dementia – Alzheimer’s disease. It was not something to do with age; it was not a natural process of aging. That habit of repeating, I realized later, was a tell-tale sign. However, the gap between general repetitions that we are often wont to and those that would make one associate repetitions with dementia is so very small that chances of overlooking it are very much possible.

Amma needed constant supervision and care and I became her primary care-giver. She had always been a very active, independent individual. Having worked since the age of seventeen, Amma had been the sole breadwinner in a family of seven, having lost her father to cancer at an early age. She attended evening college to complete her undergraduate studies and then did her post graduation in the distance mode. She even took the Rashtrabhasha Visharad examination in Hindi to learn the language. Brought up in Kakinada, where she began her career, she was transferred later to Hyderabad. After she got married, she moved to Calcutta. Here, she learned a new language, Bengali. She often said that she made it a point to talk to the maid, the grocer, the vegetable seller, with almost anyone and that was how she picked up the language. She also watched Bengali movies, initially just making sense of the bare outline of the story and, then slowly, with passage of time, understanding the spoken word. That, she said, helped her pick up the language. She spoke the language fluently; she had an accent though, which gave her regional affinity away. Amma was not bothered about it. She even learnt to read Bangla, and could read Bengali newspapers.

Amma began to work once my sister and I were able to fend for ourselves. She quit working in 2001, because, she said, she had worked for several years then and needed rest. However, she was not the kind to sit quiet and kept herself busy in all kinds of work at home. She loved the company of people and was a very jovial, friendly person, who could begin a conversation with just about anyone. Amma loved to travel and reading was her favourite pastime.

Alzheimer’s brought changes in the way she was used to living. For one, there were restrictions on her moving outdoors. The flat was kept under constant lock and the keys stashed away in such a way that Amma had no access to them. This was a necessity as she had this tendency to wander off. She kept looking for ways to go out, any door to her was a way out. She went out, everyday, to walk in our compound, but she was never alone. She did not like the constant vigil, so I had instructions to the ayah to give her the space she wanted but to keep an eye. Those days, Amma was very quick and agile; she would rush off at the first instance. There were instances of the kind and we had to be very careful. I took her out very often. We went to the market, to do groceries, for shopping, to eat out, the kind of things that she liked to do. The two of us travelled to Hyderabad to be with her siblings, nieces, and nephews, to Roorkee, to spend time with my sister and her family. Travelling with her was not an easy task; I had to be careful, lest she wander off. I always had a hand on her shoulder. Initially, she used to brush it off; slowly she got used to it.

Amma had an enviable collection of sarees. She loved the garment, had an eye for them, and loved buying them. She draped the saree beautifully. This was the garment she had been wearing since she was seventeen. We often urged her to try out the salwar kameez; she did wear it a few times, when on holiday. In summers, she wore a nightie at night. She was in a saree mostly. Well into Alzheimer’s, it became difficult to keep her in a saree. She could still drape it well, but there were chances of her tripping on the folds of it. Moreover, as incontinence set in, it made it difficult for her to drape it. For the sake of convenience and for practicality, we had to bring about a change in her dress, she was now always in a nighty. I am sure she would not have approved it but this was the need of the hour.

Dementia and its most dreaded form, Alzheimer’s disease, bring so much of drastic changes in a loved one that at times it becomes difficult to reconcile the loved one with the person she had been before it all started. Amma now is so very different from the Amma that I had always known. Over almost six years now, I have seen various changes come over her – her talk, her walk, her eating habits, and her physical health. The very independent, gregarious, fun-loving, intelligent, extremely hard-working, self-made Amma is now a different person altogether. Accepting these changes in a loved one is difficult and very stressful. There is no way I can know what is going on in her mind. Her mind is still at work, I know. She smiles at certain things, claps her hands when she hears some music, looks at pictures and smiles, eats things she loves faster, picks up the TV remote, looks at it and puts it away, pulls her dress properly if it has slightly moved, settles her hair, wipes her face with a napkin that is lying beside her, responds when I call out to her, and gives the most ebullient smile, a smile that has been characteristic of Amma.

Yes, Amma has changed much. But, then, she is still an individual who needs to be treated with dignity. Despite all the changes that dementia and Alzheimer’s bring about in an individual, it is very important to treat that person with dignity. The Oxford English Dictionary defines dignity as the state of being worthy of honour, respect, worth, and esteem. It is important to remember that no matter what changes come in the individual, they still retain much of what they had been.

Since they are in no position to care for themselves, it is up to the primary caregiver, the immediate family to take all their needs into consideration. I know exactly what Amma likes and dislikes; I know what makes her happy; I know how she needs to be given a bath, what she likes to eat and when. It is very important that friends and family members have some awareness of what is happening so that they know how to handle situations delicately and gently. Their needs have to be paid attention to, their likes and dislikes have to be paid heed to. One needs to know what would lighten their mood, what would make them smile, what would make them talk, what would make them light up, even if for a moment. Amma does not talk at all; she is completely quiet; she has stopped walking too. With Amma, the mention of her grandson will make her flash the brightest smile possible. The older memories remain intact; it is the recent memory that fades away. The feelings are still there, I know it, I have seen reactions, no matter whether they are mispronounced or at times, unclear. As I have been told a number of times, as long as Amma smiles, she is alright. That smile speaks volumes. A touch, a smile, a call out to her, a hug, a conversation which I carry on with her, to which she responds by looking at me and smiling – these matter to her. She knows I am around. I know that, I feel that.

Bio:
Dr. Nishi Pulugurtha is Head and Associate Professor in the department of English, Brahmananda Keshab Chandra College, Kolkata, and has taught courses as Guest Faculty in the department of English, West Bengal State University and Rabindra Bharati University, Kolkata. A UGC Junior Research and Senior Research Fellow in the Department of English, University of Calcutta, she earned her Ph.D on Coleridge’s poetry. She has been awarded an Associateship at the Indian Institute of Advanced Study, Shimla, India for a project on the fiction of the Indian diaspora in the United States. Dr. Pulugurtha has published in refereed international and national journals and has published a monograph on Derozio. She also writes on travel and Alzheimer’s disease.

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For more stories, read Café Dissensus Everyday, the blog of Café Dissensus Magazine.

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