I Wish I Knew....

Today I felt as though I was hit upside the head without warning. Smacked hard.

You see, I am taking a course to become an End-of-Life Doula, someone who will companion a dying person through the last part of their earthly journey. I feel as though this is the path I am supposed to be on, the path that my entire life has led up to, given my experiences and my faith. I knew there would be times that I would need to confront emotions that have been buried, with thoughts and experiences relived over. Yet, it is all part of turning toward those in need and, in turn, becoming more self-aware and continuing to work through my own grief.

This week’s material includes signs and symptoms as one is in the final stages of actively physically dying. It also included a video exchange between a palliative doctor and a patient who has just received the news she has terminal cancer.

As part of this exchange (which was acted out), the doctor asked the patient if they wanted to know what to expect towards the end. The patient was given the opportunity to hear it or not. She chose to hear part of it but wanted to leave some until her husband was there with her.

Then, upon seeing a demonstration on what the body does as it is shutting down, I began to recall and relive the last week of George’s life. I connected the dots from what I am learning to what he was experiencing. No one told me what to expect, no one told me that what he was experiencing was his body shutting down.

George had already not been able to tolerate much eating, only drinking his large slurpee every day. In the weeks prior to his passing he was drinking smaller and smaller quantities. Because he had a stomach drain due to tumors slowly closing off his remaining bowel, that should not have had an effect on his desire but we still attributed it to that. More than a week before it became increasingly difficult for him to drink or eat anything without feeling some reflux. He was receiving TPN (IV Nutrition) so eating anything was more for him to feel “normal” than for nutrition anyway, so this was not a huge concern.

However, as I am learning more about this final process, it is clear to me that these were truly visible signs that he was nearing the end. I wish I had known…. I wish I had realized this so I could have really dialed in to his experience, talked more to him, had more chances to tell him I loved him. Held him longer, harder.

Why did I not know this? Why was I not told? How did the nurse miss the signs? By the time I knew something was wrong, he had begun to deteriorate. It was me who figured out something was wrong when his fluid discharge had changed, me who reached out to the surgeon to find out what was happening. If I had not called that night, when would I have found out? When would someone have told me?

All of these emotions took over today as I went through this lesson. Tears of sadness, tears of sorrow, tears of, I don’t know, something missed? I had to sit with these feelings, acknowledging them for what they were. Then, I headed over to a nature area near my home, took my shoes off and feel the dirt and grass, trying to ground myself, to connect with Mother Earth and Father Sun. (This is yet another exercise we are being reminded to do as we become doulas.) Through my tears I observed the squirrels running through the field and the birds pecking for bugs in the dirt, the gentle flutter of the leaves, all reminding me that I am but a small piece of this big and miraculous world and that God has a plan for those creatures as much as he has for me.

As I process all the emotions that surfaced today, I recognize their importance in the work I will be doing and it will enable me to tune in better with clients, lean into their suffering, and be a better doula for them so they, hopefully, will know what is going on and be able to give their loved one quality at the end of life.