Caregiving: Recollections From Some Exalted Lives And Redefining Caregiving

“If you want to change the world, go home and love your family.”

–  Mother Teresa

After the demise of my mother, I rose from the aftermath with a Phoenixian resolve, with a renewed vigour, faith and belief in the art of Caregiving. My mind launched itself to seek stories of Caregiving with a pervading pursuit, ready to lap up every hint of share, care and compassion. My quest led to search for online support groups, libraries, literature, films, documents, journals and other paraphernalia that would lead me to stories of courage and challenges of Caregiving. Providentially, I was gifted with inspiring stories of Caregiving that today form a part of my library. Let me share three of these sombre but revelatory stories, each with its stamp of pathos, sacrifice and hope, of the reflective and symbiotic relationship between the Caregiver and the Carereciever; that can awaken the lofty spirit of man.

The first from the selection is the life-transforming book Tuesdays with Morrie (1997). The story is of a student, Mitch Albom, and his long-lost mentor, Professor Morrie, whom the student rediscovered to renew a left-out-life-lesson; visiting the ailing professor every promised Tuesday to Caregive the senior bachelor diagnosed with the incurable Amyotrophic Lateral Sclerosis (ALS), while the lessons continued. No books were required. The subject was the meaning of life. Hear Mitch Albom:

“You’re my only brother,” I said. “I don’t want to lose you. I love you”

I had never said such a thing to him before.

A few days later, I received a message on my fax machine. It was typed in the sprawling, poorly punctuated, all-cap-letters fashion that always characterized my brother’s words.

“HI I’VE JOINED THE NINENTIES!” IT BEGAN. He wrote a few little stories, what he’d been doing that week, a couple of jokes. At the end, signed off this way:

I HAVE HEARTBURN AND DIAHREA AT THE MOMENT – LIFE’S A BITCH. CHAT LATER?            [signed]  SORE TUSH.

I laughed until there were tears in my eyes.”

Their rekindled relationship turned into one final ‘class’: lessons in how to live. As life would have it, the revered professor died in the arms of the dear student.

Later, Mitch, the Caregiver, published the book as a memoir, which went on to become a best seller, launching him to grow into an author, journalist, screenwriter and television/ radio broadcaster, which he is today. The book was adapted into a 1999 television film and a stage play that opened off-Broadway.

The book deserves to be on the shelves of every school and college. Mitch Albom exemplified Caregiving as an Art.

 

The second story is of the singularly dedicated Caregiver, Jai Pausch, wife of the renowned Computer Science Professor of Carnegie Mellon University, USA, Professor Randy Pausch. Randy was diagnosed with terminal pancreatic cancer at the peak of his career. As a tradition at the Carnegie Mellon, the professors, before they retire, give invited talks titled ‘The Last Lecture’, wherein they are asked to visualise their demise and to ruminate on what matters most to them: What wisdom would we impart to the world if we knew it was our last chance? If we had to vanish tomorrow, what would we want as our legacy?

In August 2007, Randy was given a terminal diagnosis: “3 to 6 months of good health left.” Randy, well aware that a few days were left of his life, volunteered before his time, and solicited to deliver such a lecture titled “The Last Lecture: Really Achieving Your Childhood Dreams’ on September 18, 2007. The lecture became a popular YouTube video and led to other media appearances. As he neared his life’s deadline, on popular demand, he then co-authored a book called The Last Lecture on the same theme, which became a New York Times best-seller.

“We cannot change the cards we are dealt, just how we play the hand,” said Randy Pausch.

Pausch died of complications from pancreatic cancer on July 25, 2008, aged 47; but not before his determined wife gave up her own job to sublimate her life with that of her husband as an able Caretaker.

The lecture Randy delivered wasn’t about dying. It was about the importance of overcoming obstacles, of enabling the dreams of others, of seizing every moment, “because time is all you have and you may find one day that you have less than you think,” he said. It was a summation of everything Randy had come to believe. It was about living, that ended with a subtle ‘Thank You’ to his beloved wife; who went on to pen her own memoir and life as a Caretaker with Randy in Dream new Dreams, her emotional journey from wife to mother to full-time Caregiver, then to widow and single parent, fighting to preserve a sense of stability for her family. These are two books that will be shared for generations to come is a must have for every married couple.

My third selection centers around the incredible story of a young doctor of oncology of Indian origin, based in USA with a brilliant mind and a promising future, that was cut short by fate, falling victim to what another illustrious Indian Oncologist based in USA, Siddhartha Mukherjee, titled his magnum opus Pulitzer Prize winning book with, The Emperor of All Maladies: A Biography of Cancer (2011); in which he described case studies and pontificated at the scourge of Cancer at length: a fate, almost in a premonitory way, that would befall his junior colleague in 2016.

How do you comprehend the fate of a man, who after completing degrees in English Literature and Human Biology from Oxford, realises there is still much to learn! And though accepted to a Master’s programme in English Literature at Stanford; one afternoon pushed by his desire to understand the meaning of life, discovers the calling to practice medicine, qualifies his basic doctor’s degree, and to further understand that intelligence is not enough in the practice of medicine and that morality is also needed; pursues a neurosurgical residency at Stanford, to become a practicing neurosurgeon. Finally, just when his practice was on a rising trajectory, he became the patient himself diagnosed with stage four lung cancer to die at the age of 36; but not before he himself penned his memoir When Breath Becomes Air with some support from his wife for the last chapter; as she dedicated her life to her beloved husband Paul as his Caregiver. She remains a single mother, with a little daughter born just before Paul’s demise through IVF.

Paul’s words live on as a guide and a gift to us all. Sample this:

“I began to realize that coming face to face with my own mortality, in a sense, had changed nothing and everything,” he wrote. “Seven words from Samuel Beckett began to repeat in my head: ‘I can’t go on. I’ll go on.” When Breath Becomes Air is an unforgettable, life-affirming reflection on the challenge of facing death, the role of his wife as the uncompromising Caregiver, and on the relationship between doctor and patient, from a brilliant writer who became both.

In the interregnum between the passage of Professor Randy Pausch and Dr Paul Kalanithi, there emerged another renowned and respected author, another practicing surgeon based at USA; Atul Gawande, who through his seminal work Being Mortal: Medicine and What Matters in the End, created a stir in the world; wherein he raised the bar to highlight the need for realigning the concept and dimensions of Caregiving. The book, published in 2014, addressed end-of-life care, hospice care that contained Gawande’s reflections and personal stories. Gawande clinically chronicled the work of a hospice nurse on her rounds, a geriatrician in his clinic, and individuals reforming nursing homes; and dissected the Hippocratical practices, Caregiving processes on grounds of morality and human values.

Towards the end of the book, he even discusses euthanasia and openly advocates “it is not how long you live but how well you live”; bringing in a new relationship between the doctor, the patient and the art of Caregiving. Some of his influential lines from Being Mortal are:

“Our ultimate goal, after all, is not a good death but a good life to the very end.”

“You may not control life’s circumstances, but getting to be the author of your life means getting to control what you do with them.”

“How we seek to spend our time may depend on how much time we perceive ourselves to have.”

“It is not death that the very old tell me they fear. It is what happens short of death: losing their hearing, their memory, their best friends, and their way of life.”

“Your chances of avoiding the nursing home are directly related to the number of children you have.”

Gawande’s questions redefined health-care and Caregiving. His book and ideas of the times had a deep introspective influence on me and brought me closer to the deeper values of Caregiving.

It wasn’t long that providence tagged me again in 2016, while I was still in a trance with the tragic story of late Paul Kalanithi and his wife playing on my conscience; that my young, beloved and humble brother-in-law of very sober habits, without warning was diagnosed with stage four metastatic Cancer of the stomach. It came like a bolt from the blue and the sky opened up with its deluge of despair and despondency on my in-laws family. A lively, happy and contented family was disarrayed with the pain and suffering that followed with the progressive treatment and the consequent dawning of the inevitable truth that confronts every patient who is visited by “The Emperor of Maladies”! Soon we were talking of Caregiving and I wasn’t to be left wanting! As the disease took its stranglehold, in my visits to my brother-in-laws bedside and in the aftermath of my discussions with the doctors, the same questions on health-care and Caregiving arose in my mind, as was in Gawande’s, and I groped for possible answers. In many ways, they still do! My brother-in-law passed away a few months after, with the best Caregiving by the family members, as I braced up to meet John Donne’s apocryphal line, “Death Be Not Proud.”

 

My sojourn in understanding the nuances of Caregiving and its enmeshed and symbiotic relationship with Carereceiving continues and remains ingrained in the belief:

“My quest fuel my dreams…my dreams fuel my quests,” as said by AJ Voss, the young and rising Basketball player of USA who aims for the All Star NBA Team.

 

(This is the second article of a three part series on Caregiving and Carereceiving dedicated to by the author to his wife Rajalaxmi Padhi and son Arnav Padhi)

Also Read: Caregiving: Remembrances And Reflections On International Day Of Families