How to die gracefully
(and how to be grateful for it)
As 2020 comes to an end, its a time to look back. Having reflected on our journey at CSEI, I thought I would post a personal one as well. It has been such a hard year. A colleague lost both parents within a week, my husband lost two uncles, another lost an uncle to Covid, another lost a widowed parent but couldn’t be there to see them off because of travel restrictions. I lost my dad. Yet I have much to be grateful for.
Earlier, I had written about my dad’s stint at the hospital with pneumonia. A month later after I wrote that blog, he passed away. I came to the beautiful Western Ghats (my dad loved these mountains) to heal. I write this to remind me to be grateful. And perhaps talking about what I experienced may help others.
A week after I brought my dad home from the first hospitalization, he told me one evening that he was feeling strange and asked me to sit by him. I was worried and stayed for a few hours. But I was also very tired that day and wanted to sleep in my own bed so I gave him a call bell in case he needed me. Around midnight I heard a strange gasping sound and went to investigate. He seemed to be having a paralytic stroke and couldn't see or hear my husband or I. We called an ambulance. The hospital sent us one, but thanks to Covid there was no one other than the driver. The ambulance had no equipment, just a stretcher, my husband and me and we had to carry him in ourselves.
The ER doctor quickly diagnosed it as a hypoglycemic attack and administered glucose intravenously. No one told us that a hypoglycemic attack was a possibility. My dad, who had meticulously maintained records of his sugar level for 20 years, without allowing it to drop or rise much, forgot to measure his levels that week; no one forewarned us of what we later found was a common occurrence following hospitalization, or the perils of caring for a parent, who has lived alone for decades. I simply wasn’t familiar enough with his medications and monitoring routines to take over and I did not recognize the symptoms when he got the attack.
What followed was several traumatic days in the ICU. He was actually completely OK by Day 3, but the hospital had no beds available. By Day 5 when he was finally released from the ICU to the general ward he was much worse. He had severe “ICU psychosis” — a phenomenon I had never heard of, but one that everyone assured me was very common. Simply put, senior citizens lose their minds when subject to the lights, sounds, and medication of the ICU. For a short while, they had even tied him down. For my dad who slept under the open skies, and needed dark and quiet it must have resembled a torture chamber.
The ICU had induced full-on paranoia. I won’t dwell on this painful (and mercifully brief) phase when he even suspected us of lying and hiding things from him. But it gave me a glimpse into what it must be to gradually watch a loving parent sink into mental illness. And I am very grateful he recovered his mental faculties after a few days.
Two days later, the doctors were ready to send him home. By this time they had run several CT scans to investigate the underlying cause of his condition and concluded he was in the final stages of stomach cancer. His sugar had stabilized but he was too weak to run further tests. The hospital advised us to return after he had recovered his strength.
But dad had other ideas. Around 9:30 pm the night before he was to be discharged, he suddenly said to me “only 4 hours to go”. Then exactly at 1:30 am he said— “ OK time for me to go now”. He told me how much he loved us and would miss all of us. This was the first lucid sentence he had spoken in a week, so I called my sisters at once. They told him they were on their way and asked him to wait for them. He said he would wait for two weeks. The date was August 14th.
When I related this to his doctor the next morning, he didn’t laugh. He simply said “Patients have premonitions. Take him home and if he is better in a couple of weeks, bring him back and we will run tests.” But by the time my sisters arrived and took their Covid tests, dad wanted to go back to his own home in Chennai. He wanted to die on his own bed he said. So we hired two mini-vans and made the 6-hour journey from Bangalore to Chennai, dad and his “girls”- three daughters and two granddaughters.
It was a lovely trip. Wide, empty roads. We stopped for coffee and idlis as soon as we crossed the state border and had left Bangalore’s “cold, gloomy weather” as dad put it, behind. My dad ordered everything on the menu, though he could only eat a spoonful of each. We reached Chennai in good time with no mishaps, my brother-in-law arrived from the US and we hired a full-time nurse.
The question was — what next? When a person declares they are going to die soon, does one believe them? Does everyone just hang around waiting for the event? What happens if the weeks stretch into months? And we had nothing other than the doctor’s hunch, no prognosis, no tests, nothing.
I am grateful to an aunt, who called that day, and laughingly told us about the many times her own mom declared she was going to die. After this had happened a few times, she learned to respond “Sure Amma, you can die after lunch” by which time her mother would have forgotten. It helped reduce stress at the time. So eventually, we decided to lighten up. My eldest sister and brother-in-law, being empty nesters, would stay on with dad in Chennai. My second sister and I would go back to our homes since we had school-going kids. We would return in some months and take turns. We set up a home visit by a local geriatrician and my sister, nieces and I took Covid-19 tests, so we could book tickets to go home.
The twist in the tale is, of course, we all had Covid! By the time the test results came, I had a bad cold and had lost my sense of smell. My sister and nieces had milder symptoms. The next 24 hours were a nightmare. Chennai corporation sealed off the apartment with a steel sheet. We could pass food under it but couldn’t leave. My dad’s cook, who had been with him for 20 years, continue to slip us food prepared in the empty upstairs apartment. The corporation began a bizarre ritual of calling us four times a day (one for each person who had Covid) every single day and daily fumigation for the next 15 days. The calls themselves were often hilarious — ranging from folksy advice to recipes to doctor referrals and even prayers! The call center operators were working off a script but improvised quite a bit, possibly to alleviate boredom.
The Covid diagnosis led to a dilemma. Should we move out? Take my dad to a hospital? Dad was adamant he wasn’t going anywhere. He was clear that he was going to die very soon and the death was going to “beautiful”.
So this comes to the point of this blog post. We all have to die and apparently some of us can anticipate it. But no one could offer us any useful help on how to keep a person happy and comfortable in their last days and how to engineer a “beautiful” death.
The young doctor who had paid the home visit was alarmed by his condition because he was clearly very very sick. But she was visibly relieved to hear us take the news calmly, most families would yell at her for delivering bad news, she said. But it was clear she had no framework for how to be of help. 30 years ago when my mom was on her deathbed with terminal cancer, her death had been anticipated for days. Yet the doctor on duty panicked when she finally died and began to revive her. My dad was furious about our medical system's inability to let a person, who has been suffering for months finally die. Things are better three decades on, but we still have a long way to go. Our doctors are trained to help people live, not to help them die naturally.
By August 25th, it was clear dad was getting worse every day. All of us were recovering from Covid. but each day was a sharp step down from the previous, he wasn’t eating or drinking much anymore.
Two conversations that week were helpful. The first was with a geriatrician, who described how hard it is to die. She described a 90-year-old patient with dementia, who lived alone. He kept getting pneumonia every couple of months and they kept treating it, but with each bout, his quality of life considerably worsened; he was simply miserable. Her advice to the children, who live abroad, was to stop treatment.
The second was with a pulmonologist who was a friend of my dad's. In the last few days, dad was “actively dying”. I did not encounter the term till after dad passed away. Then I wished I had read more because it is very hard to see a loved one die. If it hadn’t been for the pandemic we would have rushed him to a hospital; so I am grateful for Covid. We were tempted to have the nurse administer an IV. But my dad’s doctor friend pointed out that nature’s way of dying was more humane. She said as humans stop drinking water, the salt content in our body rises. This creates a feeling of euphoria. I have no idea if this is true but it comforted me immensely. An IV, she argued, would render his misery acute.
Dad was beginning to slip in and out of consciousness but was able to communicate that 1) he was at peace and 2) he loved us and didn’t want to be separated from us. The doctor-friend pointed out my dad had given us “a gift” by communicating his wishes and feelings so clearly. Families often fight, because children disagree on how to manage the end when this stage is reached. She pointed out if you follow the patient’s wishes, consult doctors on options, and then act from a place of love you can’t go too wrong.
Dad passed away on August 31st, as he said he would. The last morning, his breathing was labored and he seemed semi-conscious as we read a theosophy text on death to him. Around 12:30 in the afternoon, his eyes opened suddenly as if he was seeing something in the distance. We sang to him till his breath slowed down.
Thanks to Covid-19, the cremation centre was empty, devoid of its usual firecrackers, garbage-strewn about, and drunken crowds. They let us daughters carry him into the crematorium ourselves and later carry the ashes to spread on the TS Beach, where he had spent his childhood and swum every day for 25 years post-retirement. Covid-19 made it easy for us to do what Hindu traditions would normally have forbidden (daughters cremating their father). It was a beautiful sunny afternoon. Birds chirping everywhere, no noise or fuss, just as dad would have liked.
I wrote this blog partly because there is so little in the Indian context on hospice services, none at all in the context of Covid. My father-in-law also died of pancreatic cancer, at home, seven years ago. We opted for no-treatment once we realized that chemo would be brutal, while only extending his life by a few months. Without treatment, he lived a normal life for almost two years. Then too, we simply muddled through it, cobbling advice from assorted doctors and websites, double guessing ourselves if we could do better. He too gradually stopped eating and drinking, seemingly content to see the world fade away. The blessing was that the whole family was united in this approach.
I am immensely grateful for the last two weeks. My dad got to express his love, give logistical instructions, introduce us to his banker, say goodbyes to his friends and tell them how much he appreciated them, offer apologies to anyone he might have said a harsh word to (few and far between), sleep under the sky each night, and have his brother read the Universal Invocation.
O Hidden Life, vibrant in every atom;
O Hidden Light, shining in every creature;
O Hidden Love, embracing all in Oneness;
May all who feel themselves as one with Thee,
Know they are therefore one with every other.
It is said that a man’s wealth can only be judged on the day of his death. By this measure, my dad died an immensely wealthy man.
