Alzheimer’s, Amma and I

One November day, Amma locked the house and went out. There was nothing strange in this as this was something that she did often. An independent woman like she had been, Amma was used to managing home and her professional world for years. However, that November day turned out to be different.

She did not come back.

We found her after forty-eight hours, a bit lost and disoriented. Tests and doctor visits followed and then the diagnosis, Alzheimer’s Disease. There were times when Amma repeated things, and when she was told about it, she would brush it off by saying she had become old. However, there was nothing to let us believe things could be this serious. The day before this incident, Amma had gone to the bank and did the groceries just like it was her monthly routine. There was nothing to even remotely suggest that something was amiss.

The incident and the diagnosis that followed changed our lives. Amma could not be left alone at home anymore, she needed to be under constant supervision and she did not like this at all. This was so very contrary to the kind of life she had led until then.

Hallucinations became frequent. At first, they disturbed me a lot; I did not know how to react to them and how to deal with them. My initial reaction was to correct her, to tell her that what she was saying was incorrect. I soon realised that it was the tangled nerves that made her say things she was saying. I soon went along with her, tried comforting her in the best way I could. It was a learning process for me. It still is.

The myriad behavioural patterns associated with Alzheimer’s Disease began manifesting and in spite of reading a lot about them, each day was a learning process. One thing that I learned is that there is no way to be prepared, each day brought new challenges. Amma was a self-made woman, she had been working since she was seventeen. Her father’s illness and death left her family of seven in dire straits. She attended evening college and worked during the day. The eldest of six siblings, she put aside questions of her marriage till her three younger sisters got married. My Ammamma (maternal grandmother) proudly told me about it all whenever she came visiting us in Kolkata. By the time she agreed to get married, one of her brothers was already in college and could take up the responsibility of the home. She gave up a permanent government job and moved to Kolkata. My sister and I often asked her why she gave it all up, and she would say she never gave it much thought. Moreover she said, with her skills and training, she knew she would get a job in Kolkata. That she did, but only when I was nine and could look after myself and my sister.

That was the kind of example I had—an independent woman, making her own choices, deciding how she wanted things to be, deciding her own priorities, always doing a great job, whether at home or outside, fun-loving, energetic, someone who enjoyed the finer things in life, a voracious reader, a film buff, a music aficionado. She learnt to love and appreciate theatre, loved travel including traveling solo, was a fabulous cook and was a very social person who could have a conversation with almost anyone. She was a strict disciplinarian when we were kids and made sure that we learnt to do things by ourselves independently.

Of course, she had an efficient ally in this, my father. It was after my father’s death that Amma became lonely and had difficulty staying at home. In spite of the fact that she was a very social person, this time she did not confide in anyone, not even in me and my sister.

Alzheimer’s Disease brought great changes in her. In the initial stages, she was able to do all that she did earlier, except that there was someone at home to keep an eye on her, lest she forgot to turn off the stove or any such thing that could cause harm. She had this habit of wandering off, and hence she could no longer be allowed to go out by herself. This was something that troubled her. For someone who had been so independent, this was disturbingly restrictive.

There were times when she would try to leave the house if she found the door left open, there were times when she would keep looking for the keys; she often complained me to about the caretaker keeping the keys to herself. It was her home after all, how could she not have the keys. I had to reason with her and tell her why. Initially, I tried to explain, later I would find ways and means of diverting her attention from it. It would work for a while, but then she would get back to it eventually.

I took Amma out, to do things she liked to do—the vegetable market, to get groceries, to watch movies and plays, to have lunch at her favourite places, and so on. I had to be very careful. We used the local transport and I had to be sure that I was always by her side. I tried holding her hand but she did not like it at all. She never said anything about it, but she would constantly try to break free. I had to find another way of holding onto her physically, to be sure that she was safe. So I started putting my hand across her shoulder whenever we went out. This was something she did not mind. That was how we went around. She was a fast walker and I could not take any chance, lest she wandered off. Our roles were reversed. Now, I needed to hold her hand, keep my hand on her shoulder, to just be sure that she was safe.

We travelled, Amma and me, even after the diagnosis came in. We went to all her favourite places, to Tirupati, to visit her sisters and her family in Hyderabad, to my sister’s place in Roorkee. Necessity made us travel by air, keeping her in one place on a train journey was difficult and I would have to be awake at night to watch over her. She loved all these journeys. I remember her almost childlike thrill on landing at Hyderabad airport, reading its name and marvelling at its size, something that she kept repeating to everyone she met.

My sister and her husband always asked her to stay with them. Her grandson was the most important person in her life, yet she kept saying no to her. It was Kolkata that was home to her and that was where she wanted to be, with me, her firstborn. Her sense of time got bungled up, yet she knew, almost instinctively when I would be back from work and would keep a watch at the gate, happiest to see me back home.

Even after a few years passed, when things got worse, this stayed the same.

Since a few years now, she has to be cared for completely. She does not talk anymore, it is as if she has forgotten how to; she does not walk at all, she has to be moved in a wheelchair; she has to be fed and cared for, exactly in the way that one would care for a child. Her smile, which earlier was a reaction to almost everything that I said or did, has now dimmed. A couple of years ago, when she saw familiar faces, she would smile, delighted to see them. She would even smile at strangers.

However, she does respond these days, though her responses have grown faint. I do understand them, at times I just feel them. She does, at times, make noises, I think they are her way of communicating. When I sit beside her, talking to her in Telugu, her mother tongue, she looks at me after a long time, then turns her head away, looking elsewhere, and her hand slowly wanders towards me. She places her hand on my hand, my dress, and sometimes, she just holds my hands for a long time. Just her fingers in mine.

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, Rabindra Bharati University and the University of Calcutta. She is a creative writer and writes on travel, film, short stories, poetry and on Alzheimer’s Disease. Her work has been widely published and she has a monograph on Derozio (2010) and a collection of essays on travel, Out in the Open (2019).

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