From Literary Genius to Alzheimer’s Patient: My mother’s journey

Utkarsh Rai-Image
Utkarsh Rai-Image

From Literary Genius to Alzheimer’s Patient: My mother’s journey

-Utkarsh Rai (executive coach, ex VP & MD of an IT MNC, Speaker , Author and Actor My mother’s journey debuted in the film “Batla House”)

It was said that Abhimanyu learnt his lessons in his mother’s womb. I interpreted that Abhimanyu must be very close to his mother. He must have listened to every word of his mother and took them as a gospel. My childhood also revolved around watching, listening and capturing many pearls of wisdom from my mother. She is a genius having a great grasp on Indian history and Sanskrit. Historical anecdotes and Sanskrit shlokas are parts of her normal conversation. She is currently suffering from Alzheimer’s disease. She was very close to her father and his passing away before her wedding had a deep impact on her. When I was born she felt that she got him back. Now when she is 83 and suffering from this degenerative disease she behaves like a small child and I have to comfort her like a father. I never thought that her belief would come true in this way. Some of her actions and behaviours remind me of my daughter’s growing up years. My mother’s journey She would come and hold my hand whenever she wanted to feel secure, so is my mother doing now. As my daughter used to knot her skirt to demand for chocolate or ice-cream, my mother will wrap her kurta in her finger and stubbornly make demands.

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She is a Hindi litterateur who has written a good number of novels, story collections and travelogues. Some of her stories have been translated into other Indian languages and a few students have done PhD on her work. Alzheimer’s is changing it all. As per neurologist’s suggestion, we are trying to make her focus on reading and writing to improve her mental health. I remembered how she used to prepare me for multiple debate and essay writing competitions. Some of the topics I still remember and ask her to write about them. She will sit for few minutes, write a couple of paragraphs and then walk away. She used to enjoy reading books and has a good collection of them, but now she just flips a few pages and sets it aside. She always used to look into the subtext of spoken words and read the person from her body language. All this was used in developing characters for her stories, but now this has taken an unpleasant turn. Her imaginative & creative mind hallucinates a lot of things and weaves stories using family members which sometimes cause tension in the house. My mother’s journey Alzheimer’s patients can sense the environment well therefore such non-stop incoherent questions or statements have to be responded with a smile, patience and by side stepping the topic.

Though her memory lapses started a decade back, but initially it looked like an age related problem which she could hide intelligently by weaving an explanation around it. But two events acted as trigger to expedite her Alzheimer’s. A few years back when my father convinced my mother to shift to my place due to his failing health, she reluctantly agreed. It was a tough decision for her as she had to leave behind a busy and active social life. An extrovert and talkative person felt caged after shifting and her life revolved around my father’s well- being. They both were over dependent on each other. One was a physical patient and the other was showing signs of mental illness. But their habit of fighting continued. Even a few years back till their sixtieth wedding anniversary they were talking about divorce in a heated exchange. Second trigger came a few months back when my father passed away. A big vacuum was created in her life. My father’s death is not registered in her memory and she will continue to look for him. Every time when she is reminded of it, the pain is fresh. In the past I used to enjoy spending hours talking on various topics from political to historical to literary but now I have to endure the pain every day to explain multiple times about my father’s death.

Luckily Neurologist’s medicines are helping her to get some sleep and do some of her own chores. When the effect of medicine is there, she looks at her numerous awards and letters of accolades and talks sanely. She comments that overuse of brain has landed her in this state. Moments like these raise hopes that her condition might get better but in no time she again swims back into the sea of dementia leaving me in despair. She used to be so strong that she took many major decisions unilaterally when my father was away on official tours, but now my mother, who mentored and guided me in difficult situations, keeps looking for me always as she feels insecure.

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Frequently Asked Questions

She loved sarees and was always dressed in latest ones. She used to change her sarees four times a day. Well starched cotton or a high quality silks were her favourites. Now she is unable to handle sarees. She wears salwar suits now and has to be reminded to wear the matching top and bottom. Once a connoisseur of food now eats just for the sake of eating. She was always into naturopathy and shuddered at the thought of allopathic medicines but now she is taking all medicines without any tantrums. Many of her life philosophy, values and beliefs to which she clung strongly are painfully changing in front of my eyes.

Her expressive eyes, which used to read people’s mind, sometimes appear like a “see through” glass, reflecting disconnect between brain and sight. Any response hardly gets registered in her mind and therefore is not reflected in her eyes. Her incessant train of meaningless questions comes to end when she is put to sleep. Invariably her last question before sleep would be asking me when God will take her back. I have no answer to this question and wait for her to fall asleep with a hope for a better tomorrow.

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