December 2015 By Radha Biswas “Such deadly patterns of remorse and helplessness arise for both victim and caretaker out of this disease; this beast that comes in waves and loops, and takes something away every time,” muses Radha Biswas, in her heartfelt account of her mother’s dementia As I walk in through the door of her flat in Calcutta, her face lights up. “Munki!” she cries with delighted surprise as if she hasn’t seen me for a year, although it’s only been a week since I saw her, on my last visit from the town where I moved recently. I bend down, and give her a kiss and a hug. Her face breaks into a childlike smile. My mother. She looks smaller and frailer every time I see her, in her billowy, printed nightie, sitting in her wheelchair in the living room, facing the door. Always beautiful, her skin has taken on a translucent quality making her look doll-like. Her short and increasingly sparse white hair has been tied in a ponytail by Deepti, her brisk, but wonderfully devoted nurse, one of a staff of three, who take turns to care for her around the clock. Radha Biswas shares a happy moment with her wheelchair-ridden mother Successive surgeries have left her weak, and she no longer walks without assistance. But of all the ailments that have conspired to make my mother a semi-invalid in body, and an invalid in the mind, it is the combination of dementia and her micro strokes, the painless ones, which are the worst. They are taking her bit by bit, and I have watched as she has fallen to pieces. She can no longer read or watch movies for long, activities which she used to enjoy once. Her hands sit limply on her lap, as if she’s forgotten they are there, until we instruct her to use them, or, as now, when she reaches out to me, then drops them, and grabs her chair handles. A sure sign of the disease, her doctor had said, this limpness of the hands, the slow shuffling of her feet, the disoriented memory, resulting from miniscule strokes in her brain from clots caused by her heart pumping blood unevenly. As her brain cells atrophy, she becomes less and less sure of herself and her surroundings, often waking up disoriented, not knowing where or who she is. Those moments are the hardest to see. So confused is her brain, that I sometimes hear her ask on waking, “Am I dead?” We have learned that every time this happens, we have to build the scaffolding for her to climb back into reality, by pointing to pictures, curios and memorabilia. We play a game of who’s who, first with everyone in the room, including herself, then moving to photographs, and so on, until she is back in the here and now. She starts to speak. In the beginning, she is lucid and animated. She asks after my daughter, my husband, and in-laws. And then she starts getting anxious. I remind her that although I have moved, I was here last week, well, more like 10 days ago. That’s how I have learned to gloss over time lapses between visits, otherwise. she descends into a panic. We even joke a bit, and she laughs. I discuss the news, some scandal playing out on TV. That night, she has dinner and goes to bed happy. My mother was always outgoing and loved company. So sometimes, I try to take her out in the hope that it will jog her cells, bring her some joy, but the outings are becoming less and less relevant. Her anxiety in unfamiliar surroundings overtakes any pleasure she might feel. An afternoon at the movies does not generate the excitement or pleasure it once did. Instead, she is consumed with anxiety, and instructs the driver to take her back home. Often, a sudden fog envelops her mind. She goes into an endless loop, repeating the same question ceaselessly, or calling urgently for Deepti, who has stepped out of the room for a bit. She does that frequently now, my mother. Always searching for someone not present, like she searches for me and my daughter when we are gone, it matters not where, to the market, out of town, or country. At the back of my mind, though, is the thought that at least she is still looking, she still misses me, and that there might come a time soon, when she forgets to do that too, forgets us. An aunt calls regularly from Mumbai, an old friend drops in when she can. My mother forgets these calls and visits quickly; she simply can’t make new memories. If she hasn’t heard from folks for a while, she starts imagining them to be dead. If I contradict her, she gets extremely defensive. This, I am told, is typical of victims of Alzheimer’s and dementia. There is a vestigial sense that tells them their memories might be inaccurate, but it is translated into an accusation of lying. So I switch quickly to humour her, in my black, irreverent humour that she used to enjoy, “Ok, who are we killing off today?” I say. She starts to laugh, and I am thankful she still gets it. Most of the time, it’s my brother she is looking for. I remind her that he and my sister-in-law live in the USA, and that he calls frequently, and they visit at least twice a year. When he calls, it is always the same question, that I know he can’t answer the way she wants him to, “When will you come back here?” Often his calls come when I am present, and I can tell from the pause, how he steels himself for the response. He has his compulsions for being where he is, and does his best from afar, arranging for the best care she can have in our absence. He is not able to give her a satisfying answer, but has learned to answer with some calm. Not like me. I get impatient, and often tire of her endless loops of questions. Or when she gets edgy, and keeps asking for something I can’t give her, like bringing my brother right that instant, when she forgets that he lives abroad, and I forget that she forgets, and no longer understands. Or when, like an impetuous five-year-old, she tries to cut into every conversation that I have with a visiting neighbour who visits her dutifully, God bless her soul. I lose my temper, and then end up totally contrite. Often she curses me in her anger, shaking her walking stick at me, sometimes even willing me dead. This happens much more frequently than I like. I discuss these outbursts with my brother over the phone; he veers between commiseration and counselling. “I know it’s tough, try not to get angry,” he says, “Just remember that she is no longer the mother we know.” “I know, I know,” I reply. What I cannot explain is the visceral reaction I have to my mother’s words still, the person whose words can cut or heal me deeper than almost anyone else’s. My visits to Kolkata are, therefore, fraught; I leave restless, although I am learning to be less so. There are a myriad of reasons why I cannot take her with me to where I am now, so I pour my prayers into her before I leave. Such deadly patterns of remorse and helplessness arise for both victim and caretaker out of this disease; this beast that comes in waves and loops, and takes something away every time. The body grows quieter, but the mind remains peripatetic, pausing searchingly at memory posts, usually from the distant past. Always a daydreamer, my mother now lives mostly adrift between reminiscences and dreams, where new memories can’t take root, but old ones wash up frequently through the mist. She has become a shell of the cheerful, outgoing, self she was once. And I know this tide will not turn back. So I do what I do, when I find a shell. I hold her close to myself for a few moments, and listen for an ocean inside. About the author Radha Biswas is a public policy researcher increasingly devoted to creative writing and teaching. She returned to India with her family after 15 years in the US and curently lives in Jamshedpur
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