Yesterday marked the fourteenth anniversary of my dad’s passing.  Although, I would always rather celebrate a loved one’s birthday than the day they passed away, this anniversary allows me an opportunity to talk of something that I have never discussed before, the evening of his passing.

Dad was in the hospital due to complications of his advanced multiple myeloma.  That evening was particularly rough as he slipped in and out of consciousness, talking of events and times long past as if he were living through them once again. My mom and I grew concerned as he began to shake rapidly but were repeatedly assured that “this was normal” by the nurse on duty.  She would come in and give him a shot, ignoring our concerns and then return to her desk down the hall.  

Shortly after one of these perfunctory medical administrations, his shaking grew uncontrollable and the nurse suddenly ran back into his room with a crash team directly on her heels. Before long, she returned to tell us that Dad had not survived their efforts to revive him. 

Our family review of that evening convinced us of two things. One, that in any medical expert’s opinion no one could have expected any different outcome in his case. Secondly, while I agree that the outcome could not have been changed, the experience of every family member in the hospital that night, not only could have been but should have been completely different.  I truly believe that if our concerns had been taken seriously, his last evening would have been more comfortable for him and more compassionate for us.

Many years have gone by since that evening in a South Florida hospital and I know that there is now a greater understanding within the healthcare system of the valuable role that family caregivers can play on their loved ones healthcare team, yet, more can still be done by all. We caregivers need to learn to exercise our rights as our loved ones care advocates and the other professional members on our loved ones care team must learn to take advantage of our expertise in caring for our loved ones who are also their patients.

I know that Dad would consider that to be a great legacy.   

Robert M. Barg
May 12, 1929 – October 4, 1991

 

Gary Barg
Editor-in-Chief
gary@caregiver.com