Susan was overwhelmed. Her job allowed her to work from home to care for her mother, Adeline, but juggling work tasks with her mother’s increasing need for care proved challenging beyond what she thought was possible.
Adeline had dementia and colon cancer. She had been a school teacher and in between moments of agitation she still had a warm, friendly tone to her now nonsensical speech.
As a music therapist for Adeline, I would visit her home, and Susan was always quick to apologize as their three large, joyful rescue dogs tripped over each other to greet me at the door, or tried to vocalize along with our music. Even with a caregiver eight hours a day and support from our hospice staff, Susan was hurried and anxious.
Susan grieved her mother’s cognitive decline. Growing up, she had admired her mother’s intelligence and was taught to value her own. Now that Adeline could no longer answer simple questions, Susan felt her mom was "already gone." She spoke of rare moments of increased lucidity like visits from a ghost — each time her mother was able to orient to reality and speak with her, she knew it may be the last time.
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.)
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.
I met the revered artist Robert Guinan and his partner, Rita O’Hara, when he became a home patient with JourneyCare and I became his nurse case manager.
Bob had a fascinating life. Born in New York, he spent time in the military, then moved to Chicago and attended the School of the Art Institute. He then taught art at New Trier High School and the Art Institute, eventually becoming an independent artist. His art focused on tough scenes of Chicago’s West Side, street musicians and life along Maxwell Street.
He became especially famous in Europe. Bob’s son, Sean, explained to The Chicago Tribune his theory on the reason why:
On a recent visit to Journeycare, we stood outside the doorway of a patient and asked the family if he wanted to visit with Mystery, one of our miniature therapy horses.
We were told the patient really loves animals, but that they were uncertain whether he was prepared for it at this time. Encouraged to ask the patient himself, we walked into the room. The man slowly opened up his eyes.
I am delighted to be exhibiting my work at Midwest CareCenter. I was inspired to do so by two other artists, one of whom had a sister who was cared for there, another a doctor who used to work with the organization.
This hospice, this wonderful, caring, abiding presence in all our days, humbled me in 1979. It continues to do so, even as I express my gratitude to it as a superb caring entity, which is superbly represented by each and every one, a caregiver, directly and indirectly.
In 1979, Paul Wise, a new patient to me, informed me in his initial visit that he had recently lost his wife. Later, after his physical examination, he asked if I knew the name Cicely Saunders. My first thought was, "His wife has just died and already he wants me to know of his new lady friend." But fortunately a second thought came in, Isn't she an English woman? Something about "Hospice" or some such? Care at home at the end of life?
The patient's breathing was labored and his forehead was warm and clammy when I arrived. His pulse was present, but irregular and quick. He opened his eyes widely and wildly in response to having a pulse ox placed on his finger. The facility staff was trying to address his respiratory distress, and the hospice RN came in to help. Not far behind the nurse was one of the patient's children. Through all of this, the musical prescription began—first a cappella, and then, after the patient's son arrived, the harp and voice together helped ease the patient's respirations.