‘Living while dying’ is a term or phrase that I have always used while caring for TiLOs (an acronym that I use to affectionately refer to “terminally-ill loved ones”) as a reminder to help them make the most of each day, one day at a time.

As I have noted in a previous blog, the final life journey for each person may be very different compared to others depending upon a variety of factors, choices and needs.  There is no “one size fits all” approach when it comes to caring for a TiLO.

For example, my father had been planning a trip back to his hometown prior to his terminal prognosis involving a rare, aggressive form of gastrointestinal cancer.  So, right from the start, I began making preparations to get him back home again even though he had already started chemotherapy treatments.  Although his condition was changing so rapidly, we were still able to make the trip instead of waiting for a better time.  Had we waited, he would have never made it back to see his relatives.

On the other hand, when my loved ones were more homebound or bedridden due to their physical condition, I took very different approaches to create alternative ways to help them make the most of each day, one day at a time, while at the same time making sure that they were as comfortable as possible.

A terminal prognosis does not mean that a person needs to just sit and wait to die.  Nor does it mean, no matter how well intentioned by hospice organizations and/or medical professionals, that we should hasten the death process.  Trust me when I say that, unbelievably, I had a situation arise with a hospice organization who had encouraged taking proactive steps to do just that, despite my TiLO explicitly stating that she wanted to live as long as possible.  In short, I fired the hospice team, which I will cover in a future blog post.

As we saw with my mother, who was given 3 months to live at best, she lived for 8 months. As a matter of fact, she was very much engaged in daily activity and interactions during most of that time, of course, with some exception as her physical condition changed.

One morning, within the first 60 days in our home, she had a mini-stroke (“TIA”) while we were all gathered around the breakfast table.  Yet, after a brief hospital stay, she was back home and, within a relatively short period of time, her condition had greatly improved and she was able to enjoy the same level of activity as she did prior to the stroke.  In lieu of bringing her back home, we could have chosen to have her cared for at a medical rehabilitation center.  However, we believed that the best place for mom was in our home even though we had no idea if she would recover.  Note that mom also wished to be at our home instead of a rehab facility.

While others may have chosen a very different course of action, one of the realities that we must contend with are the limitations within hospitals in caring for TiLOs.  In three out of five situations involving my loved ones, we were confronted with the harsh reality of policies that strictly limited the length of stay of each of my loved ones once it was determined that my loved one no longer had a “treatable condition.”  This included my mother, who was unexpectedly discharged on Day 7 of her initial hospital stay after suffering congestive heart failure despite the fact that the hospital medical team could not get her vitals stabilized.  With the proactive assistance of mom’s Palliative Care team via daily e-mails, we were able to get mom stable within three weeks of coming into our home.

Remember, until their final breath, our loved ones are literally still alive even when they are in the active stages of dying.  Help them to make the most of each day, one day at a time.  Focus on helping to maximize their comfort, desires and needs.  Should they outlive the original terminal prognosis, outstanding!  May their quality of life meet their desired expectation.

Hugs to one and all!!! ❤ ❤ ❤

~D. Toru White~