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So, What Do You Do for a Living?

When people find out that I work in end of life care, there’s a gamut of typical reactions ranging from “Hats off, hero!” to “You’re weird.”  Rarely do I have the chance to discuss the topic at sufficient length to explain or defend myself, or otherwise fully convince the speaker that I deserve no such label.  Although frustration sometimes wells, I can live with the labels.  People generally speak from a position that has been informed by their own experiences.  If I understood how their lives had been impacted by death, I would probably understand their response.  

Likewise, if there was enough time to divulge of my experiences with death, perhaps their reactions would be different.   I certainly questioned both my desire and my ability to do this kind of work before—and well after—I started down the hospice road.  Facing death on a daily basis was not at all appealing, but still I felt drawn.

Then one snowy January morning, I stood beside my grandfather while he died.  I was not by myself at the bedside—his wife, all eight of his children, and one son-in-law were also present—but it was still one of the most difficult experiences of my life.  Yet, I knew I was incredibly privileged to have been there, and I immediately felt certain that I would do it again for anyone I loved.

My grandfather’s final days, and the months that followed his death, were a strange new frontier for my family.  Apart from the daughter who works in medicine, none of us knew what the dying process entails.  Even his oldest child, nearly three times my age, had never experienced life without him.  I am at a loss for words to describe the relief we all felt knowing that he could die where he wanted to be, with minimal physical and emotional discomfort.  Hospice services made that possible.  Although my family did not avail itself of the  bereavement services available through hospice, the journey through grief that followed his death was tread with much greater strength whenever there was a friend or neighbor accompanying us in some shape or fashion.  Regardless of our location in this strange new frontier, the presence of someone who knew what to expect consistently gave us peace and somehow eased the pain.

That experience left me fully convinced that helping people get through death is worth the difficulty.  But, I wondered, could I actually wade in those waters without drowning?  That question lingered, even up until the moment I stood outside the door of an imminently dying patient at the facility where I was working (not a hospice facility).  Perhaps I’ll share more about that experience another time.  At this time all I’ll say is that I encouraged the charge nurse not to hesitate to page me in the future.

So, hospice.  Kind of a far cry from my Nordoff-Robbins inclinations, right?  Actually, I never saw the disparity.  On the contrary, when I began this work (and still), hospice seemed like just the place for Creative Music Therapy to meet patient needs.  Not that this was my idea; for starters, I had been inspired years before by video footage of Michelle Ritholz, Alla Breverman, and others working with patients near the end of their lives.

Now the road into hospice work has brought me here.  Together with Kristen, Meghan, and Noah, I am looking forward to the conversations and the insights that emerge as we begin our trek into e-community through this blog.  I’m also looking forward to learning about what we do, and about how to do it better, from everyone involved.  Most of all, I’m looking forward to the day when none of us will have to try to explain what we do, or propose to skeptical minds that it is neither strange nor morbid nor dependent upon superpowers.

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2 thoughts on “So, What Do You Do for a Living?”

  1. Jillianargue, thank you for the lovely introduction. This is starting to feel a bit like a Death Cafe http://deathcafe.com/. No, I have never attended one but I’ve thought about facilitating one from time to time.

    So looking forward to following your work here.

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