Mother's fight against memory malady
|Nabaneeta Dev Sen (extreme right) and others at a discussion organised by Alzheimer’s and Related Disorders Society of India, Calcutta Chapter, at Rotary Sadan. (Anindya Shankar Ray)|
Like writer Iris Murdoch in the biographical film Iris, she began to forget words and now has lost every figment of her memory. Her 92-year-old mother bathes, feeds and carries on a monologue with her as she stares into space.
Shefali Choudhury has been battling a debilitating disease for 20 years on behalf of her 72-year-old daughter Dipika Basu, who, in the terminal stage of Alzheimer’s Disease (AD), has forgotten how to communicate and interact.
“I sometimes wonder what my life is about. I sit with my daughter who is unable to comprehend anything and communicate with me. What is the point of my being with her?” wonders the nonagenarian, who herself is battling a host of geriatric problems.
Things were not like this two decades ago when Dipika was a senior executive at ITC. “She was very conscientious and took care about her looks and how she dressed,” said Shefali, who had found it odd when Dipika started losing interest in what she wore. But the mother was not overly concerned as Dipika had just lost her husband.
Forgetfulness manifested in other ways too. “She would forget to comb her hair after taking a bath and would keep losing her combs. Later, I found that she was locking up her combs in her cupboard,” said Shefali.
It is such quirky, non-essential forgetfulness that signifies the onset of the disease. However, matters came to a head when one day Dipika forgot to attend a high-profile meeting that she herself had set up.
“It was her close friend who warned me that something was wrong with Dipika. Her friend had read about AD in a magazine and told me that Dipika’s symptoms seemed to match.”
Neither the doctors nor the nurses in Calcutta knew about the neuro-degenerative disorder then. “I was helpless,” said Shefali, who found that care for AD was only available in south India.
“I went to Cochin. There I met Dr Jacob Roy, who had started the Centre for Alzheimer’s Patients. I went there to learn how to take care of my daughter, how to nurse her. I came back enlightened but I was a bit disappointed too for the cost of a trained help was astronomical.”
Things have not changed much since. Even today, hiring the services of a trained nurse is difficult and expensive.
Shefali came back from Cochin to look after her daughter herself.
“A lot of love and affection is what they need. I learnt from experience. Day-to-day nursing teaches you something,” said Shefali, who believes that her son will look after Dipika should she not be there.
Apart from caring for her daughter, Shefali also started the Calcutta chapter of the Alzheimer’s and Related Disorders Society of India. “Like me, there were thousands of desperate mothers who were looking for some clue about the disease,” said Shefali.
Today, the society runs the only day care centre for AD patients in the city. Dementia and Alzheimer’s patients can spend a considerable part of the day at the centre, called Ankur (P5 Regent Estate), where trained caregivers engage them in various activities providing much needed relief to the primary caregivers and relatives at home.
On World Alzheimer’s Day, Shefali’s advice to other caregivers and relatives of AD patients is to shower a lot of love and affection on them.