By Nishi Pulugurtha
[Read the first part here.]
Those eventful 48 hours changed our lives. What followed thereafter was a series of visits to doctors and diagnostic tests, which went on to ascertain the fact that she had dementia and the most dreaded form of it, Alzheimer’s Disease. I still vividly recall that she was very cooperative at most of the tests. At the neuro-psychological testing that she had to go through, she enjoyed writing most of the answers. When asked to draw a clock, she made a circle and then started writing the numbers, after 8, there was no space on clock to put in more, and she was alright with that. When asked her date of birth, she got it wrong. She was correct about her age, though. She still remembered that. She could rattle off her home address, tell them about her family members, about her nephew and how delightful it was to be with him. When asked which year it was, she said 1969. That was the year she had got married. And yes, she did remember the date of her marriage as well. The testing was a long drawn out process and after some time she got irritated. However, helpful and cooperative as she was, she went on, her patience waning. She was tested on basic writing skills too and when asked to write about what she had in the morning, she wrote a long page where she went off writing about things which did not have any link to the question.
The end result of all such tests was a corroboration of her having Alzheimer’s Disease. Medication was begun almost immediately. A lot of behavioural changes came to the fore. She was used to being alone at home, was wont to venturing out to the local shops, did all the bank work, took a walk in the compound whenever she felt like it, put clothes to dry out in the sun, took them off, watered her potted plants lined outside, chatted with the neighbour, watched television, read newspapers and magazines. After that eventful November day, we started to have a help at home, someone who would be with her through the day since I had to go to work. I had been warned to be very careful since she had this tendency to wander. The apartment needed to be kept locked all day and she had to be chaperoned always. When the ayah/carer arrived, she was pleased to have her around, but then she began to object to her having the keys of the house, objected to having the house locked always. She had these desperate urges to venture out and the ayah had instructions to take her out within the compound so that she could walk around, attend to her plants the way she did. A constant vigil was needed, any small lapse and my mother would open the huge gate and walk out with great speed. It was very difficult to convince the ayah/carer of my mother’s condition. Most of the carers did not understand her state. Here was someone who walked about, went about her daily needs, talked and apparently there seemed to be nothing wrong with her. The house keys became a big bone of contention and we had to find ways of keeping it beyond her reach. I still remember, travelling home from work, one evening, and my ayah calling me up telling me that she and my mother came out of the apartment and by the time she could lock the door and take my mother out, my mother darted off. Thankfully she did not venture far off and was able to get back home. Calls from home always made me jittery. I was always tensed and nervous. I did not know how to cope with such things.
The behavioural problems simply kept compounding with each passing day. Hallucinations are common, I was told, in Alzheimer’s but, then, however much of knowledge and information one has about things, one is never really prepared with ways of how to deal with them. When they began, I did not know how to react and my first reaction was to brush them aside, to reason with her. I soon came to understand that there was no point reasoning and explaining. We just needed to let certain things be. My role as a primary care giver, I was told, was of utmost importance. I started reading up on the disease, its ramifications, how to deal with issues that might come up. Help came in, from friends and family who have stood by me always, from the doctor we consulted and most importantly from Nilanjana Maulik and the Kolkata chapter of the Alzheimer’s and Related Diseases Society of India (ARDSI).
The hallucinations increased and often became difficult to deal with. She would tell me that a Hindi film actor was perched on the tree in the compound. This hallucination was pretty frequent. She saw the goddess Lakshmi staring at her in the evening from outside the window, she would tell me that her younger son-in-law and nephew were waiting for her across the street, that she needed to fetch her nephew from school. During the initial stages, most of her conversation centred around her nephew, Adi. She talked incessantly and her conversation was marked by repetitions. Those of us who knew her condition were okay with them, but then there were others who looked quizzically. My mother was a gregarious, outgoing person who loved to talk. But most of her conversation became repetitive and many times there was no logic in what she said. She was confusing events, people and time periods. She was still coherent at times, and she was aware of the time of day when I was to return home. Most days, I would find her walking in the compound with the ayah, waiting for me to get back home.
What I noticed in my interactions with her was a detachment from everything. It began very slowly. She used to cook and there were times when she forgot to add salt, misplaced things and I was advised to supervise her activities in the kitchen. Slowly, over a period of time she stopped cooking. However, she continued to chop and cut vegetables, peel garlic and peas. She still tended to her plants, folded clothes but then always seemed to have this urge to go out, an urge which seemed to increase in the afternoons. When I was at home, she would come and tell me “let’s go out”. No matter how the weather was, she wanted to go out. Once out, she wanted to get in. And this cycle would go on for some time. It was not easy to do everything she wanted to do. She read and reread the newspaper a numbers of times. She still watched the telly but there was not much concentration. She would go in to have a bath and come out without having it. She had forgotten whether she had a bath of not. She was forgetting everything. It was frightening and difficult to see someone you love and care slide away. She had to be coaxed to eat, at times refused to eat saying that she had already eaten.
We did go out on weekends, to her favourite restaurant, to the local shops, to do shopping, to malls. She enjoyed it all. But then, I needed to hold her hand as if she were a little child who could be lost in the crowds. She did not like it at first, would shrug my hand but then later got used. We even travelled to Hyderabad to be with her sisters and to Roorkee to be with my sister and her family. We journeyed by flight as it was impossible to travel by train since I needed to keep a vigil on her. I still remember her delight at the sight of the Hyderabad airport in autumn 2011; she was fascinated by its size. At a restaurant she loved, we went to celebrate her birthday and, all of sudden, in the presence of my aunt and me, she darted up the escalator. We had to rush up after her; we just could not let her be alone.
Another place she loved to be at was the day care centre of the ARDSI, Kolkata chapter. The fun, banter, and all the activities at the centre kept her happy for some time. The last time she travelled was in 2012 to my sister’s place where she spent two months. Change, I noticed troubled her; crowds and noises troubled her, too. Unfortunately, change is the constant factor in life. Important documents had to be kept carefully since she could misplace them, almirah keys had to be removed, medicines had to be kept out of her reach. Moreover, she could never be left alone. When the ayah was absent, I had to be at home to care for her. There were times when I had to be at work for some time and the ayah was absent; I took her to work with me. The roles had reversed. In my childhood, I frequented my dad’s office and now I took my mother with me to work. My mother had become my child, to be cared for.
Today, she is a completely different person. She has stopped talking completely. She does recognize her near and dear ones; I can tell by the way she smiles when she looks at people. Tears well up when she sees a familiar face. The same happens when she hears about friends and family members being mentioned. She still loves chocolates, pastries, mishti doi and ice cream. She pauses when she looks at the television, at a face whom she finds familiar, flips through newspapers and magazines and smiles fondly at human faces, stands in front of the mirror and smiles at herself, keeps the beat occasionally when she hears music and, oh yes, she loves to walk. Any door seems to be an outlet leading outside and she goes through them – that urge to wander still strong. Old photographs still bring a gleam in her eyes.
And yes, that smile is there – radiant and charming in its own way.
[Read the first part here.]
Dr. Nishi Pulugurtha is Associate Professor, Department of English, Brahmananda Keshab Chandra College, Kolkata. She is an academic with varied interests and writes on travel, too. Twitter: @nishipulu
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