Sabr: A care collaborative

Every week, my mother forgets who I am. She looks directly at me and asks, where is Paroma? The first time she did it was during a phase when neither of us was sleeping. She would be awake till dawn, hallucinating. And I would be awake with her, singing her favourite songs, telling her stories and rubbing her feet. I reacted badly, the first time she did it. Now, when she forgets, I reply calmly. Ma, I am Paroma. When she hears me, I can almost hear the gears switching in her brain. Of course you are Paroma. I must be sleepy, she says. Course correcting, a white lie to cover up what has just happened. 

I think I have always known that something like this would happen. Life has never been easy for Ma, although meeting her you would never know that. She had the loudest laugh and the keenest sense of humour. Which she hasn’t lost yet. She maybe one of the few people who jokes about memory loss and her situation with abandon. She also had the most fantastic sense of adventure. And was the best teacher. Which she still is. But I do know the trauma that she has been through having witnessed some of it firsthand. And I think that there is some connection with the life that you have led and the way your brain copes with the impact of that life. But I am no scientist. 

I function in an intuitive manner on most days. I can now tell how the day is going to go based on how Ma has slept the night before. Or whether she goes to the washroom before I leave for work or after. I can anticipate reactions based on the weather and what she has eaten. If Ma hasn’t had enough water to drink, I know things will be rough. 

Every day I wish things were different. Obviously. I wish things were like they were eight years ago. Or five years ago. I wish I had made different choices. There are days when I close my eyes in the taxi on my way to work counting the things I could have done differently in the morning. I could have woken up half an hour early, I could have recharged the phone the night before, I could have washed my hair the night before instead of in the morning and saved ten minutes, I could have given Ma muesli instead of toast because she doesn’t like butter anymore. 

Losing memory is a long and painful journey. Ma, who would go everywhere on her own, is now dependent on me. Which means she can hardly go anywhere. Public transport is out of the question because every few months, walking becomes a difficulty. We’ve become hyper aware of places that are accessible for wheelchair users and try to do activities during the daytime because, well, sundowning. But Ma is still her best when she is with people. And I am less worried about what people will think. In case of a memory slip, I know how to interject with some humour. I also know that I should give her time to be heard. Even if what she says sometimes doesn’t quite make sense. But didn’t we label that as eccentricity only a while ago? 

As a caregiver, my life has changed, too. Of course. I can no longer go on dates without extensive planning and have to explain to whoever I meet about Ma, only to watch them become incredibly sympathetic and shut off from the actual date. I can no longer travel. I used to love travel. I have gone weeks without sleep. I have also discovered this amazing empathy in my friends who have covered for me at meetings and offered me hugs and quiet moments, as well as bought me a drink in the evening and allowed me to ramble, gently reminding me to call home and check in with Ma. I have had moments when I have given up. Screaming and crying myself into panic attacks, rushing out of the building at 3 a.m. because I couldn’t breathe. I know how to self-regulate better now, but I fail spectacularly sometimes. 

I watch Ma being absolutely coherent and able, telling me that I cannot leave the house without making the bed and that no one should go to work in a school wearing a wrinkled kurta because children learn from us. I also watch her admit to deep insecurities with an honesty that breaks my heart and cry when she can’t remember a word. She’s adapted to that, a dumb charade of sorts- where she acts out what she wants to say and I guess. 

We laugh about it, and she asks me again, Paroma, I have a disease, don’t I? Can you tell me what it’s called? 

You people tell me I can’t go out, but I can. I remember so many things from the past. Our house in Shyambazar with the ‘engine er maath’. Give me a page, I’ll draw it for you. The gate between the ladies park and the gents side of the park. 

When I forget things, it’s not always the same. How can you ask me how I feel? It’s always new to me. I sometimes can’t remember where Paroma has gone and who she is with. I get so worried, but it’s also about security, isn’t it? 

Can you remember the dining room in Shyambazar? I can remember the smells of cooking coming from the kitchen. I remember the long table, discussions and decisions. We always washed our hands before eating. 

You are forgetting what to ask me now! 

I may forget what I ate for dinner. Unless it’s a good meal from a restaurant! I sometimes don’t bathe simply because I don’t want to! 

Where did all these books come from? I don’t want to throw any. Daddy Long Legs – I will never throw. 

Every night I dust the bed before going to sleep. 

Are you asking about the present? I like Golf Green because it is safe. But it is so quiet. I feel claustrophobic sometimes. But I don’t remember when I felt it. 

Forgetting something is one factor. Recalling something is another factor. 

Can I watch CID now?

The beauty of memory is that it evolves. Our reality now is that I am the keeper of memory, for both of us. It has evolved to becoming in many ways, a single entity. I am still not used to it, but I do my best. And so does Ma.

Author bio

Paroma is an educator. Just like her Ma. And hopes to be one for as long as possible. 

Kunal is a photographer and filmmaker. Besides, he plays a part in the cultural and socio-political sphere in different capacities, ranging from organising international festivals to setting art programmes for children.