By Nishi Pulugurtha
I don’t like being home, I don’t like being confined, I want to do things I would like to.
Being at home is making me depressed, I feel like going out.
I feel bored at home. I find it constricting.
I feel stifling, I want to be able to do things the way I used to.
I am angry with all this.
COVID-19 has forced us to practice social distancing and social isolation and these are the common things that one gets to hear these days. There is fear and anger too, frustration as well. There is still so much beyond our control. As we are grappling with what is happening around us and trying hard to deal with it, to come to terms in ways we can, my thoughts go out to those who have dementia and its most dreaded form, Alzheimer’s Disease. As the primary caregiver to my mother for many years now, I have seen what it does. My thoughts go out to the family members of those with dementia, to their loved ones and caregivers.
Amma had a tendency to wandering about. She would just walk off the moment she found an open door. She would just head off, swiftly and without making much of a noise. When her diagnosis of Alzheimer’s Disease came in, I had to make sure the house was always locked. She did not object to it; she herself had been very wary and careful about keeping the house secure. What made her angry was that the keys were with the carer for most part of the day and then with me. She spent quite a lot of time looking for it. As I think about it now, it is sad – being in your home, locked up, with no access to the keys. However, I had to do it for her safety. She could walk out and get lost as it had happened with her once before. That time we were lucky, we found her and got her home. There was no way I could take chances.
Restrictions needed to be made as it was important that she be safe and secure. As we complain, crib and are angry at the way things are happening around us, my thoughts keep going back to the various steps I had to take years ago. There are many more caregivers like me, for whom each day brings with it a new set of difficulties, a new set of problems, a new learning process that we would want no one to go through, but then things are not in our hands. Amma loved being outdoors, she loved doing shopping, the bank work, the groceries, buying vegetables, etc. She did it with a great flair. Having worked since she was sixteen, she decided to relax after her retirement and make the most of it. She kept herself busy, reading, going out and tending to her plants with great care. After the diagnosis I could not let her go out alone. I took her out regularly, we even travelled within the country, went on holidays, to restaurants and the like. She did not like me holding her hands, something I had to do just to make sure she was safe. As she shook it off, I had to find out a different method to make sure she was safe when out. I would put my hand on her shoulder as we negotiated the streets and markets outside. That seemed to work and that is how we went out.
I know she enjoyed these sojourns, but I also do know she would have loved to do many of this by herself, the way she used to before Alzheimer’s made its presence clearly felt. Restrictions had to be put in place as it was important to keep her safe. As we face restrictions in our lives right now, as news of a lockdown in Kolkata and other parts of the country come in, all of what happened in the first seven years of the disease come back to me. It has always been a part of my life and being. I think people reading this might now be able to comprehend it a little. I say a little because people everywhere believe that these times will pass, things will surely get better. They are able to hope and to look beyond the restrictions; they are able to find ways and means to deal with the present times.
For Amma and many others like her and for the families affected by it, we know this is always a part of our lives. Amma is immobile now; she is completely quiet; she has forgotten to talk too. Her bright, ebullient smile is dimmed these days. There are however many others who have dementia and who have to be kept at home, whose routines have been even further hampered by all that is happening now. Their routines too have been disturbed due to all the restrictions. If there is anything that makes things more difficult for someone who has dementia, it is change. Unfortunately, change is the most constant thing in the world. I stand with all caregivers, family members, professional caregivers, all those who try to make things work a little, as we try to deal with increased stress in these times. We negotiate this stress by taking one small step at a time to make life pleasant and comfortable for our loved ones with dementia.
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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