In June 1992, I received a phone call that would forever change my life.
My younger brother, Jimmy, called me to share that he had just been diagnosed with AIDS, which was unexpectedly discovered during the early stage of an elective surgery procedure that he was undergoing to resolve some minor issues with his sinus. Only four months earlier, he had tested negative for HIV. Without hesitation, I agreed to be his caregiver, a role for which I had no idea as to what was entailed, especially when it involved a terminally-ill loved one. Over the course of the next five months, I learned firsthand what being a primary caregiver for a terminally-ill loved one was all about and so much more.
At the time, little did I know that this would be my first of five shared experiences with terminally-ill loved ones over the next 20 years.
In the years that followed, I would care for an uncle, my father, my mother and, finally, my college sweetheart and wife, Melanie. The underlying diseases or ailments respectively included colon cancer; a rare, aggressive adenocarcinoma of unknown origin; congestive heart failure; and TNBC/IBC, a rare, extremely aggressive breast cancer combination which later would metastasize to Melanie’s brain in the form of leptomeningeal carcinomatosis, another extremely aggressive form of cancer that is fatal in most cases with or without treatment.
Almost as though the collective experiences were scripted, the challenges that I came face-to-face with escalated with each passing experience far beyond anything that I could have ever imagined as I cared for each respective loved one. This caught me by surprise as I had originally thought that there was no greater medical challenge than dealing with AIDS at a time when very little was known about this disease which, unlike today where AIDS is more chronic in nature, was fatal in most cases.
If there is one commonality among all five experiences aside from the fact that each of my loved ones was terminal, it was in the fact that even after the terminal diagnosis and subsequent prognosis, they were very much alive. As a result, my focus was on how to maximize their comfort as we navigated a wide range of challenges, issues and decisions in what would be their final months of this life journey as we know it. Since there is no “one size fits all” when it comes to caring for a terminally-ill loved one, it became essential that I quickly find a way to also maximize the quality of their end-of-life experiences.
I was honored that each of them trusted me enough to “walk” with them on their respective final life journeys.
I can honestly say that I truly believe that there is no greater challenge in life than caring for a terminally-ill loved one.
I look forward to sharing additional insight that I gained over the years while, at the same time, providing a comfortable place for all who find themselves dealing with end-of-life related issues.
Gentle hugs to one and all!!!
~D. Toru White~