It was the Annual General Meeting at ITC, and my daughter, Dipika Basu, being a senior executive in the company, had meticulously prepared for it days in advance. But on the day of the meeting, she forgot all about it. In fact, she was at home and slept through it. It was then that she realised that something was seriously wrong with her.
In fact, now that I think back, her forgetfulness had started long before this cataclysmic episode. She was a very careful dresser, taking care to wear the right clothes with the right accessories. But I was dismayed to find her paying less and less attention to how she looked. I put it down to the fact that she had lost interest in life as she had had a sudden bereavement. She lost her husband only five years after her marriage. Dipika had married late, when she was in her 40s, and she was left alone in a huge house at her in-laws’ after her husband’s death. I think that took a toll on her mentally, though one can never say what causes such memory loss.
Around this time, a very close friend and colleague of hers warned me that my daughter needed medical attention because her forgetfulness was causing serious problems at work. This was back in 1991 when no one had heard of Alzheimer’s Disease.
I first found out about the disease from an article in The Reader’s Digest. Gradually, I started reading more about it, and the more I read, I realised my daughter had the symptoms. But then she was only in her 50s at that time; generally Alzheimer’s strikes at an older age of 60 or 70.
Today I am running 93, and my daughter is 72. She is at an advanced stage of Alzheimer’s Disease and has been bedridden for almost 12 years now. She can no longer talk or communicate. I spend time with her in the evenings, talking to her, giving her company. She stares into vacant space. I can no longer physically look after her now, though I did that for a long time at the early stages of her disease. Today, I am beset with my own ailments. So I have two ayahs (helps), who take care of her under my supervision. But such patients need specialised care.
In fact, back then, after I consulted various doctors, including neurologists, who took memory tests and told me she could have Alzheimer’s Disease (no one could give me a definite prognosis), I went to the south looking for help. I wanted to find out how I could take care of her and look after her. No one in Calcutta was of much help. I was told that there was a specialised centre at Cochin for such dementia patients. I went to Dr Jacob Roy, who told me how I should handle my daughter, what needed to be done, what the prognosis was. I found that there were specially-trained care givers at the centre. But they came for a price. Back then, in 1991, a trained caregiver would cost me Rs 3,000. And two of them round-the-clock would pinch me by Rs 6,000 a month. I could not afford that. So I came back to look after my daughter myself.
Around that time, I lost my husband too. He didn’t have to see much of his daughter’s suffering. My daughter continued to work at ITC till she was 55. Her boss and colleagues were very helpful. They used to give her light work and would come and check on her from time to time.
One day, my daughter did not return home from work. She would drive to work herself, though she was struck with polio at the age of five. But Dipika was fiercely independent. She faced a lot of trouble getting a driver’s licence because of her polio. She had a hand clutch installed in her car so that she didn’t have to use her stricken left foot. So, one day she forgot her way back home and drove to Victoria Memorial instead. Thank God, there was someone with her and they found the way back. After that, I stopped her driving ever again. Dipika resented that. We had a huge mother-daughter fight. I also kept a driver for her, but she refused to go out after that.
Handling a dementia patient requires a lot of patience and perseverance. She used to fall down frequently while walking. So I did away with all furniture and the carpet that could make her trip. She used to live at her in-laws’ place in the early phase of her disease. It was a huge house with very few people. There used to be a 24-hour help, but often when I visited her, I found her alone. So I made her come and stay with me. I could no longer take the risk of letting her live there alone. She threw a huge tantrum over that, too. But it had to be done. I knew what was coming. The doctors had warned me. I had read enough too. She needed 24-hour surveillance or she could wander out alone and never come back.
Ever since Dipika has been afflicted, my life has changed. I have been a homemaker all through my life but I had a hobby. I used to do flower arrangements. I grew up in Darjeeling where there were a lot of flowers. I learnt flower arrangement from the British ladies who still lived in Darjeeling when I was young. I picked up some myself. The hobby remained with me even after marriage. My husband was an engineer with the railways. He would be away on duty and so I would spend time with my hobby. My speciality was flower arrangements based on Tagore’s verses. I did exhibitions at Max Mueller Bhavan, Agri-Horticultural Society of India and also in Delhi. All that stopped soon after my daughter took ill.
Taking care of my daughter took up all my time. After my visit to Dr Jacob in Cochin, I came back to start the Calcutta chapter of the Alzheimer’s and Related Disorders Society of India right here at my home on Clarke Street. I felt the need to form an organisation so that people could be made aware of the disease. Today, Alzheimer’s has taken the form of an epidemic. There are a huge number of people who are grappling with this ailment. Earlier, when people lived in joint families, it was probably easier to handle such a disease. The house would be full of people and the afflicted person could be well cared for. But today, in the age of nuclear families, taking care of Alzheimer’s patients is rather difficult. My objective was to help them and also help myself. Relatives of patients would come, and I would talk to them and send them to the right doctors where they could get help. Today I have delegated the work to others as I cannot do much.
I am on a pacemaker myself and need to take five medicines every day. My son, who lives downstairs, has made a chart of medicines for me on the dining table. I follow that. Besides, my eye is also giving me trouble. I cannot walk anymore without the help of a walker. But as long as I am there, I will look after Dipika. When I’m gone, I believe my son will look after his sister. The rest I leave to God.
As told to A Basu