When I began home hospice with JourneyCare a year ago, I did not expect I had much time left due to my end-stage COPD. One of my top concerns was my pitbull, Coal. I rescued her from a shelter as a six-month-old puppy, and she has been my constant companion for the last eight years. I hated the idea of having to give her up due to my illness, so I hired a dog walker. (Luckily the dog walker fell in love with Coal and agreed to adopt her when I am no longer here.)
My family was thrown into a crisis when my mother suddenly collapsed at home. She experienced multiple, catastrophic health events that lasted for more than a year. She ended up in a viscous cycle of recurring pain, hospitalizations, surgeries, complications, re-hospitalizations, infections and – just when we thought it couldn’t get worse – amputations to her lower extremities.
We ended up in just about every setting of care in Chicago, none of which could address all her needs. At one point, we brought her home with 24-hour care and were outraged to learn we had to pay $15,000 per month out of pocket because Medicare didn’t cover it.
We wished we would have been more educated and better prepared.
Music therapists use a range of musical techniques to help hospice patients relax, express feelings and recall significant experiences from their lives. Using both instruments and voice, music therapists encourage pateints to sing along with them or will help patients write songs to leave as a legacy for the people they love.
I don’t think I will ever forget one of my first experiences working as a full-time music therapist in hospice. Fresh out of an internship and living in a new city I realized I had some growing to do. I can remember my first couple of visits with one gentleman in particular. At the time, I was referred to help him with anxiety and processing of his illness. Strong, independent, and very open about what he wanted and didn’t, he was of course a little hesitant of the young woman walking in with a guitar ready to sing — wanting to know exactly how I could help him.
Drawing on their musical and clinical palliative care training, music-thanatologists use harp and voice to address physical, emotional and spiritual suffering at the end of life. Using music prescriptively, they vary the tempo and tone of music to respond to changes occurring in a patient's body, like a slowing of pulse and breathing, in the final hours of life. During their visits — music vigils — they alternate sound and silence to help patients and loved ones relax and rest.
Rebecca is actively dying. Her breaths have become agonal, and her skin is gray. Her cousin and I arrive at the same time, and together we sit by her side, offering her comfort.