My mom passed away just 2 weeks ago. But I really feel the need to write my thoughts down as quickly as possible before routine, daily duties, and the real impact of her death hits me.
Two momentous things happened in the week before my mom passed away. In a landmark decision, the Supreme Court passed a verdict allowing passive euthanasia and declared the validity of a living will. Ironically, I was reading the newspaper headlines as my brother, his wife and I were heading to Aster Medcity to see Dr. Ramkumar, Pain and Palliative care specialist.
When someone close to us is ill, and there is no clear cure for that illness, we still have hope. Hope that some miracle will happen and they will get better. We try all kinds of medicines, quack remedies, pujas, prayers……the list is endless. When my mom was diagnosed with dementia in December of 2015, the doctors were very clear – medicine would not help and the kind of dementia she had meant she would lose her memory and power of movement very quickly.
A year and 4 months later, we had to get her a hospital bed. She had limited movement, memory, speech or recognition. But she started going downhill exactly 2 years after she was diagnosed. Since December of 2017, she had no or little speech, no recognition, and virtually no movement. Her eating gradually came down to a point when a week before she passed away, she was barely sipping water.
So what were we doing all these while? We watched helplessly as no matter what we did, she did not get better. We were arguing the pros and cons of a food tube, IV drips, urine catheter….in fact every possible gadget known to medical science so we could help her function as normally as possible.
My sister-in-law and my brother suggested we talk to Dr. Ramkumar before we took any decision. The 45 minutes we spent with him was the turning point in my mom’s, and our, life. He explained the futility of prolonging the body’s life with medical gadgets. He spoke to all of us on the symptoms of a person close to death. He also said that as a family, we should decide and he would help us with whatever decision we took. But then he finally asked us a question – Are you ready to let her go?
We came home and spoke to my dad. We felt that we would face stiff opposition from him on putting amma under palliative care, and that he would prefer we put a food tube. That is when he finally told us that amma had always wanted to die in her own house, in her own bed. She hated hospitals – in fact, it was a herculean task to take her even for a blood test when she was well! He told us that we cannot take amma to the hospital nor should we make her suffer longer.
His decision gave us the strength and the courage to go back immediately on Monday with my mom’s nurse to get a care plan for her. We started her palliative care treatment on Tuesday. On Friday, she breathed her last peacefully, after listening to her favourite MS and Meera bhajans, sipping some Ganga water, and lying in her bed.
Now every patient is different. Every disease is different. And so is every family. What worked for my mom may never work for you or your loved one. Therefore, I can only talk about how my life should end in this world, now that I have seen the way my mom died.
I want to die with dignity. I do not want to be in pain. I want to die in my bed, in my bedroom, and in the house my husband built for me. I DO NOT want to be surrounded by strangers, nurses, doctors, machines, gadgets or clean, hygienic hospital walls. The last thing I want to see before I die is my husband sitting near my bed, my daughters giving me sips of ganga water (or red wine – whatever is around, I may not be that fussy at that time!), my favorite friend holding my hand, and a qualified nurse hovering around with a huge shot of morphine. Just in case!
PS: A huge debt of gratitude to Dr. Ramkumar for ensuring my mom had a peaceful and near-painless end. She truly was at peace. Her face was glowing when she closed her eyes for the last time. Thanks is truly an inadequate word.