Post Terminal Prognosis: Topic No. 6 – When You Love Someone…

“When you love someone, you will do anything to keep them from dying,” said Shaun, the main character in the hit TV medical drama, “The Good Doctor,” when conversing with a fellow colleague following a sudden terminal diagnosis given to his mentor and good friend, Dr. Glassman, during an episode in Season 1.

As I heard those hauntingly familiar words, my eyes began to water.  It brought back vivid memories of the first time that I had this same exact thought on a fateful Sunday morning in June 1992.  My younger brother, Jimmy, called me to share the devastating news of a terminal prognosis that he had just received that morning.

Almost instinctively, my first thought was that I had to do everything possible to keep him from dying as he was only 29 years old, just six months shy of his 30th birthday.  Although Jimmy and I were polar opposites in nearly every aspect of our beings and interests, the love that we shared was second to none with only one exception…the loving bond between him and our mother, Hideko, as he would forever be her “baby.”  This fact made it even more imperative that I find a way to help Jimmy extend his life well beyond the terminal prognosis of five to six months.

Armed with some basic knowledge about HIV and AIDS that I had picked up from my new collection of medical books on this infectious disease, I jumped in with both feet to help my brother extend his life well beyond the terminal prognosis.  Over the course of the next five months, I did everything humanly possible and then some, hoping to increase my chances of success.  I knew no limits as I was getting about three to four hours of sleep each night, working full-time, taking Jimmy to all of his appointments, medical errands or visits to the hospital, caring for him at his home during and after my work hours, plus tending to the needs of my wife, Melanie, and our 3-year old son.  About two weeks in all of the days just seemed to string together.

Aside from an unexpected 30-day reprieve in August when Jimmy’s symptoms seemed to finally be contained, at least temporarily, providing some short-lived hope that the hard work, sacrifices and focus was working, regardless as to how much effort was being expended, keeping him from dying became a greater challenge with each passing day.  He passed a couple of days before Thanksgiving.  I had failed to not only keep him from dying but also from reaching his 30th birthday.  No matter how hard I worked I could not stop him from dying.

It was not until four and a half years later while helping care for my terminally-ill uncle, did I come to realize that my focus had to be on “doing anything to help my loved one live,” rather, than, on “keeping them from dying.”

This new realization was much more than a matter of semantics.  It would literally prove to be such a life changing revelation just one year after my uncle passed, when my father called me to inform me that he had been given a terminal prognosis of six months.

Instead of trying to keep my father from dying, right from the start all my efforts shifted to focus on how to help him live each day to the fullest while, at the same time, I continued to research for potential treatment options.  Fortunately, with the passage of time, by 1998, the Internet was more commonplace and provided me with access to a broader range of medical information.  Despite the extremely challenging symptoms that he endured the final week of his life journey, I believe that our shift to focus on living actually contributed to a more peaceful passing.

I continued to take this same approach when caring for my terminally-ill mother just eight short years after my father died.  After having cared for three TiLOs–my endearing term used to refer to “terminally-ill loved ones”–over the course of the previous 14 years in their respective homes, for the first time, we would care for a TiLO in our home.  My mother had been given a terminal prognosis of three months at best.  Long story short, she lived for eight months.  On what turned out to be mom’s final day, while visiting her Palliative Care physician to pick up some additional comfort meds, I asked him how was it that mom lived for five months longer than the original prognosis of three months.  He responded, “David, it was probably because of the loving care that you and your family provided by caring for her in your home.”

Then, four short years later, we found ourselves in one of the toughest life challenges that I could have ever imagined.  Melanie, my lovely wife, would initially be diagnosed with a rare combination of two of the most aggressive types of breast cancer—TNBC and IBC.  During the course of the final 15-months of her life journey, which did not start out as terminal, she received two separate terminal prognoses.  After beating the first one, she would receive a second one in May 2012 which eventually claimed her life after battling a very aggressive, rare form of brain cancer for three months known as leptomeningeal carcinomatosis.

While we focused on living each day to the fullest, I also utilized every available resource to find a way to try to slow the progression of the “lepto” as we believed that with each day that Melanie could open her eyes to a new day, there was hope that someone just might come up with a more effective treatment option.

The moral of the story as I have discovered as a direct result of my experiences with walking with five TiLOs during their final months of life, when you love someone, do everything possible to help them make the most of each day, one day at a time.  As long as they are able to draw another breath, they are still living.

As always, great big hugs to one and all!!!

~D. Toru White~

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