Watercolor "Jacaranda Tree Tops" by ~liz 6-17-12

Note: The following reflection surfaced for me upon reading Erie Chapman’s fine essay “Intimacy: The Sacred Encounter between Caregiver and Patient”, (June 8, 2012).

It can be very difficult to stand present with someone who is suffering or within the poignancy of their dying. Our first inclination may be to run as we are uncertain of what to say or do as well as being confronted with our own vulnerability. Yet, if we show up with a listening heartfelt presence it communicates beyond the mere confines of words; for we can trust that the sacredness of Love will guide us and mutually bless the encounter.

Yet, we are human and sometimes even with the best intentions we may falter. The one person in the whole world I wanted to show up for was my brother, John Sorensen. During his intense six month illness, our family rallied to support him and rotated staying with him at his home. Since I lived cross country, I came home to companion him during his hospitalizations and stayed with him 24/7 for 2-3 weeks at a time, without a bed and little sleep.  Still, we developed a good rhythm and I provided for his most intimate care. We had a trusting easy flow between us.

I remember the afternoon when my sister and I met with his oncologist. He planned to tell my brother of his poor prognosis the next morning. Wanting to protect, my sister and I decided that it might be better if I told him that evening. I attempted to gently relay the truth. Naturally, he was very upset and felt that he was given a death sentence. It was somewhat of an outer body experience for me, surreal. His girlfriend was upset with me that I broke the news. I did not mean to crush his hope; only soften the impending blow. Perhaps, I forgot everything I knew as a palliative care nurse. Looking back, I deeply regret intervening and I wish I had let the doctor be the one to tell him.

After that, my brother sought a second opinion with a prominent physician in Manhattan. He gave him a more favorable prognosis and a glimmer of hope. Johnny went through major surgery and endured unimaginable pain with great courage but his condition continued to rapidly worsen.

I can recall a few times when Johnny gave me cues that he wanted to talk about his dying. You see we were always very close. Instead I sat quietly with him, afraid "to go there again ”.  I  regret the missed the opportunity to open into that sacred space with him. Now, I can think of a million diffent ways I might have responded.

Eventually, Johnny was admitted to a hospice hospital to better manage his unrelenting pain.  I was alone there with him the night he died, suctioning him, providing his care, singing, praying and talking to him. It required all my courage. Yet, since then I have lived with this terribly painful regret. Three years have passed, and the feelings are beginning to ease to the point that I can share this with you. Still, in doing so, I feel quite vulnerable.

 I do not wish to cause discomfort to anyone who might happen upon this page. Nor, am I seeking your sympathy. Perhaps, it is a part of the healing process; as blessings gradually replace painful memories. It is my hope that bringing this to light might be of benefit to someone else in need.

What I learned from my experience is that I was not able to maintain nursing objectivity when caring for my brother. Also, I have a greater understanding of a whole other dimension of grief- beyond loss, which caregivers also may experience. On a less than rational level we can torture ourselves with the “what ifs” or I wish I said this or done that, rather than focusing on all we were able to give.

What I do know is that we loved (love) each other and our family infinitely, and that was abundantly clear to both of us, beyond the mere confines of words.

Gratefully,

~liz Sorensen Wessel