By Nishi Pulugurtha
After Amma’s diagnosis came through, the greatest concern was to keep her safe while making sure that she was able to do whatever she wanted to. Her tendency to wander off meant that I had to keep the house locked at all times and keep the keys beyond her reach and at the same time I had to make sure that she was able to continue to do things she was wont to. This was problematic and paradoxical too, but it was something that I had to do. Amma’s way of life had to continue the way it was just before the diagnosis. At the same time, the fact that she had Alzheimer’s Disease also meant that our lives were to change in ways we had no clue about. That is what Alzheimer’s does – changes the lives of all in the family, changes it in such ways that no one is prepared for or can be prepared for.
There is no way one can be prepared for what is to come or what might happen in a particular scenario. Reading up on material about the disease helps to an extent but most of the learning about how to tackle the loved one and how to go on at times that are very difficult is something that one keeps on learning and continues to even after years. My intention is not to scare or frighten anyone, but just to highlight the issue that dementia and its most dreaded form, Alzheimer’s, is extremely difficult to deal with, more so because the one afflicted with it is a loved one and needs much care and attention. All of this creates great stress on the primary caregiver and the immediate family. The caregiver needs to come to terms with the fact that the loved one is behaving differently, is doing things or saying things that she never did – all of this disturbs a lot. It causes a great deal of panic and stress on the primary caregiver who at times is clueless on how to tackle things, on what to do and how to do.
In Amma’s case, I needed to have help at home so that Amma had someone with her always. These helps, as I have written earlier too, have absolutely no training of any kind, and are absolutely clueless on how to deal with situations and people. The first reaction that I had most was that something was wrong with Amma mentally. It was not just the ayahs, who came from poor, low backgrounds and were mostly illiterate, that I got these reactions from. Even educated professionals had no clue about what dementia and Alzheimer’s entailed.
On her 71st birthday, a part of Amma’s tooth broke off. This necessitated a visit to the dentist who said that the rest of the broken tooth still there and the tooth next to it had to be extracted too. I waited for my sister to visit us in a few days as it would be of great help with her around before scheduling an appointment. The teeth were extracted but Amma did not comply with the dentist’s instructions, she kept on talking in her usual manner. The dentist was getting irritated at her non-compliance and this in spite of my repeated telling him about her situation. He just could not be made to understand her condition; it just did not ring a bell. I knew there was nothing I could do but to try and talk to Amma to ease things out for her. Anything new or different from her usual routine disturbed her and this experience in the dentist’s chamber was not helping at all.
I never gave up talking about Amma’s condition and what it entailed. My reading up about it made me aware of the fact that it could happen to anyone. That instances of dementia and Alzheimer’s disease were on the rise and that we need to be aware of what it entails and try to find ways and means to deal with it is of great importance.
Just after the initial visit to the doctor, even before Amma’s final diagnosis came through, I was asked to get in touch with Ms. Nilanjana Maulik, the secretary of Alzheimers’s and Related Disorders Society of India (ARDSI), Kolkata chapter. I still write to her, message her whenever I have a doubt or query about to deal with things of situations that came up in caring for Amma. Nilanjana has always been ready with advice and suggestions that have proved to be most useful for both Amma and me. The ARDSI, Kolkata chapter has a day-care for people with dementia and Amma was a regular there for some time. She loved to get ready and go there. The carers there do their best to involve all in all kinds of activities, individual needs are taken into account and a number of activities keep these “old children” busy for some time, while their family members get a breather for a few hours. I was no longer completely dependent on the ayah now. I could go out to work even on days she was absent as I knew Amma was in a nice, comfortable place. I had to get home early, of course, to be there by the time “my child” returned from day-care. I wish Amma could continue to go there. However, as I moved home it become difficult to send Amma due to the distance and the amount of travel it necessitated. How I wish we had some more of these day-care centres all over Kolkata. The day-care centre, Sriti Sudhay, itself had to move last year to a newer location and I am told that this too is a temporary one. Incidentally, Sriti Sudhay completed 10 years this month. (For information about caregiving and dementia in the Indian scenario, another site that might be of help is https://dementiacarenotes.in/.)
We have been on this journey for about eight years now and each day has been a learning experience. Behind much of our smiles and talk is a lot of pain and stress, but then we have to go on. Amma, as I have written earlier does not talk at all now, but these days, I notice she makes a sound in response to my talk and even to her carers talking. There must be lots she wants to say, she tries making noises and we respond to them as we did to her talk before. The sound of a song elicits a response; she looks in the direction of the sound and moves her head slowly as if in response to it. When she sees a familiar face, she looks on for a moment before smiling a faint smile.
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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Read the latest issue of Cafe Dissensus Magazine on ‘Travel: Cities, Places, People’, edited by Nishi Pulugurtha, academic, Kolkata, India.