By Nishi Pulugurtha
It has been over nine years since Amma’s diagnosis of Alzheimer’s. A disease I had heard about, but knew very little as to what it entails. As our journey went on, I kept learning more and more about it. I read everything I could about it. However, my real learning came from my day to day experiences of caring for her. It is difficult, very difficult caring for a loved one with Alzheimer’s and being witness to the drastic changes that come about. It is painful too and very disturbing. Alzheimer’s changes all – it brought about great behavioural changes in Amma, changes which disturbed, changes which I did not know how to cope with. Each day since the diagnosis has been a struggle.
There have been hallucinations, mood swings, a great desire to wander off, a slow detachment from things that mattered, from what she liked and loved to do, a forgetting of time and place, a confusion of day, month, year, a confusion of place, a forgetting of things (initially insignificant ones but with the passage of time important and significant ones). Cleanliness and sanitation take a back seat, because of this forgetting. She had to be cared for, tended to. She often forgot to eat and hence the need for a constant monitoring of food and medicines. Over a passage of time, she started being quiet, spoke very less, often used gestures to call me, to draw my attention. At times she would be adamant and refuse to eat. Stories about her grandson would come in handy then. Her world revolved around him. And his name would always brighten up her face. At times she would refuse to get up and have a bath. She had to be coaxed into, and soon the carers at home learnt about things that made her happy.
There were times when she would be withdrawn completely, lost in a world of her own. At times she would listen to the conversation at home, maybe smile a little, and then walk off. It is very difficult seeing a loved one fade away such. Names and faces started getting confused. On opening the door and seeing a dear friend, she addressed her by the name of a politician – a resemblance that never struck us. In a couple of minutes she had forgotten about this and addressed her by her actual name. Some years ago, she looked at a gentleman and addressed him as her grandfather. The resemblance was not much, and I think it was the tangled nerves that caused it all.
Things began getting worse when she started getting convulsions. Each convulsion led to further deteriorations – her walking faltered and then stopped completely, her talking did so too. There was communication happening though. The moment she saw me or a known face she would break out into a most brilliant smile. That smile told us she had recognized us. As I spoke to her, she would look at me, smile in response, at times would look away. Maybe hold my dress for a while, take the mobile from my hand, look at the television remote or at the newspaper. When she met people who were unfamiliar, there was a social smile on her face, quite different to the way she smiled at us. For over six months now, the smiles have reduced. There are times when she does not respond to my calls; she does not look when I call out. My voice is no longer a familiar one, I guess. She has forgotten me too. She looks piercingly, as if trying to figure out my identity. Then she looks away, she does not recognize me. This is what happens most of the time. There are times, though, when she hears the door open and looks in that direction. I guess somewhere she knows I had come home; she looks at me, and when I call her, she responds by making a noise. A hint of a smile too. The noises that she makes make me wonder if she is trying to say something. At times they are loud, at times they tell me she is happy with something. She makes them when she is sitting and looking at things, and when is on her bed, and in her sleep too.
A few months ago, an old neighbour had come over to meet her. She hadn’t met the gentleman for a long time. However, when he called out to her, she looked at him and smiled a brilliant smile; it was quite obvious she had recognized him. It was the smile of one who is immensely happy to see someone she liked a lot, an old friend. We were surprised to see her reaction and happy too. When her niece addresses her over the phone, there seems to be a sense of recognition, a hint maybe, but there nevertheless.
The reactions are much muted but there. I see them, at times very faint, but there nevertheless. I believe there is some cognition. Last summer I was away from home for a week. When I got back, she seemed alright. However, she refused food. That scared me and I tried ways and means of giving her food she loves. Had she forgotten to eat, chew and swallow? It took us quite some time to get her back to her normal, usual eating habits. We were relieved. A month later, I had to be away from home again; this time my sister stayed with her. Amma was just her usual self. I guess, she did understand that her daughter was with her, and that probably gave her comfort. My sister’s presence made all the difference to her.
In spite of all the muteness of responses, all the cognition disappearing slowly, she does understand intuitively about comforting presences, about her dear ones. I think, in spite of not being able to recognize me most of the times, I am a familiar presence; my voice and touch comfort her.
I have come across people casually remark when they had forgotten something that they must have Alzheimer’s or dementia. People joke about it very casually. I have even seen a television anchor make a joke about it some time ago. An article published online in Millenium Post, “Democracy in Dementia” stigmatized dementia: “Our democracy is dangerously poised by a kind of dementia obfuscating our decision-making and a sort of amnesia obstructing new thoughts.” Dementia is a serious brain disorder and the use of it in ways such as these are deplorable. It is an outrage against the millions who have dementia and to their families. It is time we realize the seriousness of the disease.
Dr. Nishi Pulugurtha is Associate Professor in the department of English, Brahmananda Keshab Chandra College and has taught postgraduate courses at West Bengal State University and Rabindra Bharati University. Her research areas are British Romantic literature, Postcolonial literature, Indian writing in English, literature of the diaspora, film and Shakespeare adaptation in film. She is a creative writer and writes on travel, Alzheimer’s Disease, film, short stories and poetry. Her work has been published in The Statesman, Kolkata, in the anthology Tranquil Muse and online – Café Dissensus, Coldnoon, Queen Mob’s Tea House and Setu. She has a monograph on Derozio (2010) and a collection of essays on travel, Out in the Open (2019).
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