Post Terminal Prognosis: Topic No. 7 – Creating a Heaven on Earth
“No one can stop a ticking clock. But the great ones…the great ones always find a way to slow it down.”
Kevin Costner’s character, Sonny Weaver, Jr., makes this very insightful statement as the challenges of the day continued to pile up in the movie, “Draft Day.”
As in life itself, especially following traumatic events such as being on the receiving end of a terminal diagnosis and prognosis, it is very easy to become overwhelmed with the events of each passing day. Before we realize it, we find ourselves rushing from one moment to the next until, without warning, daily life becomes one big blur.
In retrospect, when I put Sonny’s mindset into the context of caring for a TiLO (“terminally-ill loved one”), I could not stop the progression of their respective illnesses, one of the most important steps that I undertook was to assist my terminally ill loved ones to maximize the quality of each day. Their ailments, to the greatest extent possible, became almost secondary to living each day, one day at a time.
Though we could not stop the ticking clock following the issuance of the terminal diagnosis and related prognosis, we could find a way to slow it down. We created a “heaven on earth” environment, customized to each respective loved one as defined by their interests, desires and needs, only tapered by any physical limitations caused by their medical condition.
For instance, my mother was diagnosed with congestive heart failure and told that she had three months, at best, to live. Although the hospital had virtually given up on her and discharged mom after only seven days as they were unable to stabilize her condition, as this was a hospital policy; through the good graces of a very proactive Palliative Care physician and his team, via daily e-mails, we were able to work together to restore her vitals over a two week period after getting her settled in our home.
Mom had shared with the Palliative Care team, as well as with us, that it was her desire to live as long as possible. As her heart was extremely weak, the only way that we could possibly meet her desires was to minimize any further strain on her heart. In order to do so, contrary to the wishes of an initial hospice care team that I fired immediately, mom chose to be bedridden with the exception of us using a wheelchair to give her a change of scenery from time to time or when venturing out for appointments.
Prior to mom’s condition changing so suddenly within a couple of weeks after her former doctor had changed one of her prescriptions — which, of course, congestive heart failure was one of the potential side effects — she was always very independent and very active and mobile with the assistance of her trusted wheeled walker.
So, faced with limited mobility, I converted a home office into mom’s personal heaven on earth. In addition to placing her bed near the window where she could look out every day, hear the birds and surrounding sounds, take in the fresh air and feel the gentle breeze in the morning and evening, I also brought in a lot of her personal keepsakes, pictures and many of her comfort clothes that she loved to wear.
At the same time, I also surrounded mom with a lot of her favorite Japanese movies and music and, with Mel’s help, we made it a point for mom to enjoy Japanese home-cooked meals for breakfast, lunch and dinner. Our teenage son, Nick, also helped with preparing some of his grandmother’s favorite Japanese noodle dishes (i.e. Udon, ramen, etc.), while his younger sister, BW, would spend quality time reading to her grandmother as well as listening to music or watching movies with her.
At the start and end of each day, my Japanese mom and I would share at least one word in her native language. Little did I know at the time just how important this particular habit was until about five to six months in, when my mother awoke one morning and could only communicate in Japanese. Fortunately, our daily morning and evening routine had brought back some of my basic Japanese language skills plus, although mom did not recognize me for a period of about six hours, when I spoke to her in Japanese she was familiar with me speaking Japanese to her over the months, and she actually thought that I was her doctor. Later that afternoon, mom regained her English-speaking skills and was able to recognize me once again.
About forty-five days later, when mom was in a semi-conscious state, even though she was unable to communicate with me, I still continued the habit of saying Japanese words to her each morning and at night. Although she never opened her eyes or spoke again during her final ten days, when Mel and I went into her room one evening after a very eventful, medically challenging day that I was able to get through in keeping mom comfortable, I said, “Okasan, daijobu,” to which mom replied, with a little smile without opening her eyes, “daijobu!”, as she expelled her final breath.
In translation, I essentially asked my mother if she was okay, to which she replied, “I am fine.”
Earlier that day, during a visit with mom’s Palliative Care doctor to pick up a supply of large gauge syringes and some prescriptions that I needed to administer via injections to help alleviate some of mom’s late stage symptoms to keep her comfortable, I had inquired with him as to his thoughts as to how my mother had outlived the prognosis by at least five months. He replied, “David, I believe that the loving environment and care that you and your family provided played a big part in extending her life beyond the original prognosis of three months.”
As I have shared in earlier blog posts, each of the final life journeys that I shared with my TiLOs were as unique as each respective loved one. The “heaven on earth” shared with my father was a 10-day road trip…via car and plane…back to his hometown and state, while for my beloved wife, Melanie, it was a 15-month magic carpet ride with the assistance of a wheelchair that enabled us to get out each and every day, as well as take a number of road trips by car since her condition prohibited her from flying.
Please note that while I can truly appreciate the common refrain of “only God knows how much time we have…”, following a terminal prognosis, my objective was to focus on how to help my loved ones make the most of each day regardless of their condition. If they lived beyond the given prognosis, this provided even more days to share.
As I have shared with others over the years, whether they be the terminally-ill patient or their loved ones, rather than investing a lot of negative time and energy towards the doctor(s) or focusing on how much time was stated, make every effort to focus on how to make the most of each day one day at a time.
As always, great big hugs to one and all!!!
~D. Toru White~