Resolve to Have a Conversation

I remember my grandfather’s last year of life well.  He was the ultimate family man and the ultimate representation of The Greatest Generation.  An intelligent, funny, and loving man who valued education and remained a diehard Democrat until the end of his life.

For birthdays, graduations, Christmas, and sometimes out of the blue, he would send us thoughtful handwritten letters on yellow legal paper. To this day, when I unexpectedly encounter the increasingly rare yellow pad it always bring a smile to my face and a warming to my heart.

My grandfather had congestive heart failure (CHF) which we knew about, but the family was continually reassured that people live with this disease for a longtime.  I think we mistakenly heard this as “not a big deal”.  The progressive nature of the disease was under-discussed and overlooked

My grandfather’s last year of life was typical for someone with CHF.  As his heart function deteriorated, he had more exacerbations, symptoms became harder to control, he became oxygen dependent, and the family scrambled to figure out what to do as emergencies kept arising, relying on the reactive medical system to guide us in our next step.

Like many folks, yet another exacerbation landed him in the hospital and he was sent to a skilled nursing facility for rehab to “get him as strong as he can be.”  I remember visiting him with my sister as a well-meaning physical therapist forced him to walk across the room.  I say ‘forced’ unfairly, knowing that while my grandfather did not want to, it was the therapist job to do so and Medicare would not have paid for him to be there if he were not engaging with rehab.  The problem was we missed the mark entirely.  My grandfather did not need exercise; he needed to be told he was at the end of his life and be given options about how he would like to spend his time.

As a sign of a life well lived, my grandfather was accepting of death and I know that he would have chosen to opt out of of life prolonging care to focus his end how he had lived: being with family, making jokes, discussing politics, and having people caring for his symptoms out of the hospital.  As is typical for so many Americans, hospice was called in only on the day he died.  I do believe our cultural fear of acknowledging death took from him the opportunity to choose how he spent the last year of his life.

Inspired by the shortcomings we’ve experienced, I am resolving to have these conversations in my own life.  A few months ago, I began having these conversation with my parents.  I thought that I would know their wishes but instead I learned there is so much I don’t know.  I learned these preferences are truly individual and cannot be assumed.  My father, for example, helped me to know that he is willing to tolerate some pain if it means that he can be more engaged and alert.  Had I not had this conversation I would have likely advocated for him to experience no pain, thereby removing the balance that he believes to be important.

And because I know tomorrow is not promised, I am obligated to share my wishes as well.  I have begun sharing them with my husband and have given him the legal authority to make decisions on my behalf if I am unable to do so (due to the fact that in Colorado this right does not automatically default to your partner).  In our 30s, I can’t say that he is always happy to hear from me about my end of life wishes, but I know changing the culture in our own family is where we need to start.  I am hopeful that as the years pass and illness comes we will continue to be courageous in our conversations.

Through this process I have realized that it is not one conversation, one DNR order, or one trip to an attorney to complete a living will.  These things create an artificial sense of being prepared.  Instead, it is a series of sharing and asking as life continues to change.  I now know that discussing end of life wishes does not take away hope, but rather gives it.

Seeing this segment on ABC World News helped me to know that my family is not alone in wanting to do it better.  I hope it is as inspirational to you as it was to me.