Before The Light Fades: Terminal Lucidity And Other End-of-Life Experiences

My friend’s grandmother recently died at the venerable age of 94, after years of dementia that had relentlessly and gradually robbed her of her lucidity and personality, until she was barely able to communicate any more. Finally, she was admitted to hospital with a pneumonia that was so serious, the doctors warned her family to be prepared for the worst.

But she did not die as expected, not yet anyway. Not only did her condition stabilise over the next two weeks, she also started to speak again. She started asking for, and having coherent conversations with, friends and family, amazing everyone who had not heard her utter a sentence for years. She even told my friend who had a holiday trip coming up, that no matter what happened, she should not cancel. Eventually, the old lady asked to go home, and after a few days, she passed on peacefully.

What my friend experienced with her grandmother is “Terminal Lucidity”, which describes a phenomenon in which a dying person who has been unresponsive and uncommunicative, suddenly becomes alert and clear-headed. Relatives may think this is some sort of miraculous recovery, only to find that the person soon lapses back into a stuporific state before dying. Also known as “end-of-life rally”, “bounce back” or in 回光返照, in Chinese, this phase may last from minutes to days.

A FLARING OF A FADING LIGHT

Biologist Michael Nahm is credited with coining the term in 2009 to describe this temporary return of clarity and vitality, which could be observed in the days or even hours before death. He and his co-workers published a case series in the Archives of Gerontology and Geriatrics (2012): most of the patients that Nahm and his team observed had severe neurological conditions like advanced dementia or Parkinson’s Disease, but terminal lucidity has been observed in many different patient types. There are various explanations offered, but the truth is, no one really knows why this happens.

The authors wrote that “increased awareness of unusual end-of-life experiences could help physicians, caregivers, and bereaved family members be prepared for encountering such experiences, and help those individuals cope with them.” I wonder if these experiences are really that unusual: they could be more common than we think, but no one talks about them. I do agree though, that awareness of such occurrences could help us walk families through the experience of accompanying the dying person on that final journey.

A LAST GOODBYE

Not everyone goes through this terminal lucidity phase, but when it does occur, it may have profound meaning and impact on the family. For some like my friend, and as described in this article, it can be a precious opportunity for meaningful time with a loved one, a brief return of a cherished relationship, a “last hurrah” before the fading of the light.

Others believe that the dying person wants to convey “last words”, and feel obliged to fulfil any expressed last wishes. When those last words are not uttered or not coherent, or those last wishes are not able to be fulfilled, uncertainty, regret, and possibly a more difficult bereavement may be experienced. A few of my patients were still wracked with guilt that they could not do what their dying relative had asked, for example sending a parent back to hospital when he/she had wished to die at home. And now, facing their own end of life, these unresolved issues added to their inner turmoil.

Death is not extinguishing the light; it is only putting out the lamp because the dawn has come.

— Rabindranath Tagore

My maternal grandmother had her brief rally, when, on what would be her final night on earth, she suddenly requested for “kopi” (coffee) after not eating nor drinking for days. My mother made us brew up a fresh batch of sweet black coffee, just the way Mama liked it. She had a tiny sip, fell back into a doze, and died a few hours later.

The whole family had known Mama was dying, not only because she was a frail nonagenarian with cancer, but also because the week before, during a rare wakeful moment, she had announced to us that Connie had come to visit. Connie was a childhood friend of my mother who had died decades ago! And any traditional Peranakan knew that when a dying person started to see and talk about the departed as if they were present, the time left would be very short. Soon, that person would “cross over”, or in our patois “jadi orang halus.” Ah, the many euphemisms we have for death and dying, but that is another article for another day.

A UNIVERSAL PHENOMENON AND ALSO A UNIQUELY PERSONAL EXPERIENCE

I had grown up hearing stories from my grandmother about her younger days in Melaka, when she was keeping vigil for her dying mother-in-law in the hospital. My great-grandmother kept talking about long-dead relatives and friends, which frightened many people, including her own daughter who refused to accompany her, saying she was afraid of ghosts. So my Mama, her dutiful daughter-in-law, had to do it. I remember asking Mama if she was scared, and she replied in her very pragmatic way, that if the old lady was not frightened, then she had no need to be either. And anyway, the “melekat-melekat” (ancestors) were just coming to visit, why would they want to cause any problems for their own family members?

It made perfect sense the way Mama explained it, and emboldened me to ask if Ah Kong (her late husband) ever visited her. My grandfather was taken away by the Japanese after the fall of Singapore in 1942, and like hundreds of young men rounded up during the Sook Ching, he was never seen again. Mama replied in a matter of fact way, yes he did, from time to time. I was flabbergasted. “How do you know?”. “I just know”.

Over the years there have been hundreds of books about understanding and preparing for dying and death, from a wide range of perspectives. In the 1990’s, Sogyal Rinpoche’s “The Tibetan Book of Living and Dying” – which I found esoteric and rather heavy-going – was a massive bestseller. More recently, Dr BJ Miller and Shoshana Berger’s “The Beginner’s Guide To The End” offers a practical 21st century approach. The huge diversity underscores the reality that death may be a universal phenomenon, but the experience is unique to each person, family and community. And dying is not merely a biological phenomenon, but has been and always will be, a social, psycho- emotional and spiritual one. So even as we seek to understand terminal lucidity and other phenomena that occur around death, my sense is that the answers will not be found only in the realms of science, but also in the fields of philosophy, sociology and spirituality. Or there may be no clear answers at all. For those patients and family members who are “thinkers” and “do-ers”, who wish for a roadmap to guide the way forward in their dying journey, this kind of uncertainty can be deeply unsettling.

There will be experiences which are undeniably real, but which remain a mystery. That is not a bad thing, because it keeps us humble, and keeps us curious. We will each ask our own questions, seek our own meaning, and find the answers which make the most sense to us.

The House of Belonging

I awoke
this morning
in the gold light
turning this way
and that

thinking for
a moment
it was one
day like any other.

But
the veil had gone
from my
darkened heart
and
I thought

it must have been the quiet
candlelight
that filled my room,

it must have been
the first
easy rhythm
with which I breathed myself to sleep,

it must have been
the prayer I said
speaking to the otherness
of the night.

And
I thought
this is the good day
you could
meet your love,

this is the black day
someone close
to you could die.

This is the day
you realize
how easily the thread
is broken between this world
and the next

and I found myself
sitting up
in the quiet pathway
of light,
the tawny
close-grained cedar
burning round
me like fire
and all the angels of this housely
heaven ascending
through the first
roof of light
the sun has made.

This is the bright home
in which I live,
this is where
I ask
my friends
to come,
this is where I want
to love all the things
it has taken me so long
to learn to love.

This is the temple
of my adult aloneness
and I belong
to that aloneness
as I belong to my life.

There is no house
like the house of belonging.