Shobha's mom Dr Nalini Nargundkar has been ill for the past three weeks and it has been an intense experience just watching her deal with her gradual loss of control. For someone who has lived a major part of her 91 years with a great degree of control - she still lives alone in her bungalow at Pune at 91 - it will certainly be that much more difficult. So I wondered how she would take it.
For starters her stay in the hospital was something she detested totally primarily because the ICU and the restraints thanks to her electrolyte imbalance which bound her to the bed. Tubes inserted down the centre line, a catheter, saline, oxygen completely fixed her to the bed and she was a mere shadow of the normal self she is. She constantly kept saying she would like to go home and once she was slightly better the doctors did comply with her wishes after a couple of weeks.
At home, she suddenly came into her own, enjoying the comfort of her bed, despite having the oxygen supply and the catheter on. She was weak from her illness, so weak that she cannot sit up on her own. But I could sense her mind working on how to get out of this situation and bring some amount of control and normalcy into her life. For starters, she would insist on watching the 4 pm serial on TV though she did not have the energy to last more for a few minutes, asked for her glasses and her novel though she could not read nor make sense, asked for a warm water bath, asked to be taken out into the courtyard on the wheelchair, asked to play cards and at times when others were not up (like 4 in the morning) she played solitaire on her own. All the above are signs of her normal life and she wanted to experience that normalcy for a short while.
But in the last few days she is losing energy and strength and she perhaps also realises that things may not be normal though she expresses her desire that it would be nice if she could get up and walk on her own. 'How long can you all stay here?' she says with concern. 'If I can move around I can manage.' Now with the pain also comes bouts of hallucinations where she sees or remembers people and incidents and repeats those names continuously, sometimes expressing morbid thoughts like 'marun tak' (Marathi for 'kill me'!). It is not easy to see her like this, to see her pain and helplessness and more than us, to Shobha, who breaks down every now and then.
In her lucid moments she is extremely clear. 'I am trying to think how to solve this,' she said to me. I could see that desire to figure it out on her own, in spite of her weakened condition, her unclear faculties, her near total dependency, knowing that we may not be capable to that task. In so many ways she knows her body better - she said she was better without oxygen and she actually is doing better without, she said she would be better at home than in hospital and she is doing better, she said she will eat food directly and not through a food pipe and she is doing well enough there. She figured out her bed sore faster than anyone else. So she knows she may have to climb out of the pit herself but finds her body and mind not cooperating.
In her frail and fragile state, her hearing not being good, her energy not enough to explain what she is feeling, there is much we need to figure by ourselves. Like today when I asked her if she would like to eat anything she said she does not want anything. I simply volunteered her favorite indulgence - ice cream - and her eyes lit up. 'I will eat ice cream,' she said. Anjali got a bowl of ice cream, we made her sit up and she actually polished it off despite her weakness and almost falling over in the chair. If I had not suggested that, the moment would have been lost.
It has been quite a revelation to watch what's happening between Shobha and her mother. They don't see eye to eye as much and its not like a relationship like say Anjali and Shobha have. But the way Shobha dug her heels in and sits by patiently with her mother through all her tantrums, pain and demands is wonderful to see. She plays cards, cracks jokes, plays music, sits by her bedside, comes away crying when she sees her mother crying in pain, composes herself and is back at her duty, not once losing her composure. Dressing her, cleaning her, holding her, fighting with the doctors, nurses, attendants to keep her mother comfortable, she is with her every bit of the way. When the suffering increases Shobha wonders what her mother is holding on to and why she does not just let go. In fact she has these conversations with her about why she is holding on, why she is not deciding and her mother also answers or ponders over it. When Shobha cracks her jokes, her mother smiles in such a beautiful fashion, her toothless face lighting up, her eyes closing in pleasure. I wish I can get one of her smiles on camera - one of the best I have seen for the sheer pleasure. It is something I will never forget, Shobha mothering her mother like a baby. In fact her mother actually told her yesterday - you are my mother. Beautiful.
Anjali has handled this phase very well. I wondered if she would be able to see her grandmother in this condition, deteriorating by the day, losing control of her faculties and being fed in bed like a baby, but she adapted fast. She plays cards with her, asks her to tell stories, reports what happened in school, feeds her stuff every now and then, reads sometimes, sometimes just holds her hand.
I saw this moment the other day. After being in pain for a long time and trying to convince us to do something about it, Shobha's mom turned to her side in resignation. 'No one listens to me anymore,' she said. I could see her mind clouded by the effort, her body weakened, and in that state, she slowly reached out and held Anjali's hand. And in that, she found some solace and quietened down. I remember reading in the 'Tibetan Book of Living and Dying' how touching a sick person gives a lot of relief. I realised she would not have reached out to our hands as easily as she did Anjali's. The only difference with Anjali is that she would be non-judgmental about it all unlike us who might wriggle out. Ever since that moment, I have been holding her hand or placing a hand over her forehead when she is more agitated and can definitely see her quietening down. The body is struggling, internally and externally, her mind is not cooperating, the world as she knows is closing down, and she needs reassurance, needs love and care, needs to know people are around for her and not shunning her. I think she has a sense of that now. One day she actually counted all the people who visited her and said that she is happy that all those who could come have made it.
Incredibly, in one of her worst states yesterday, Shobha made her mother say hello to her younger sister Asha and her niece Jyotsna. In her weak state, she smiled and said hello into the video call and when they asked how she was doing, she smiled even more wider and said 'Uttam' (as in perfect!) Then she asked her sister how her recent recovery from a fracture was and stuff as if nothing was wrong with her at all. Not a word of complaint, just getting on with life like normal. The other day when Milind came to bid her good bye before leaving to the US, she told him of her plan to be waiting for him in May and he could meet her here at home. Milind came away shocked at her optimism, at her clarity of thought on how she would be getting over this illness.
And so she continues, adjusting to this transition, difficult one certainly, smiling through it as much as she can, asking us whether we have had our meals, whether Anjali's classes were going on, asking exactly for what she wants whether its coffee, ice cream, sheera or fruit juice. Watching and waiting, keeping her comfortable and happy, the journey goes on into the narrow end bringing up moments that are painful and beautiful.
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