Susan was still fairly young, a 66 year old woman who had suffered from multiple sclerosis. When I entered the room, she was lying in bed, had slightly labored breathing, and did not respond when I greeted her or said her name. She had family surrounding her, two sisters and a brother-in-law, who all very kindly greeted me.
I cared for a hospice patient named Bill, who was a very large man and a former horseshoeman. His wife Betsy called him, “My gentle giant.” I could see he was strong in his day, especially by his rough and calloused hands. He was fading now with the complexities of being bed bound for many years after a stroke. The right side of his body was lame and very constricted.
Betsy told me that Bill had done everything from farming to raising sheep, cattle and dairy cows — he had done it all. Both of them had been hard workers all their lives.
Barb had been an active, independent and social woman who was now bedbound in the home where she raised her family.
At 94 years of age, she primarily depended on her adult son and hospice team for her care. Barb’s family was planning to move her from her home to a nursing facility, which brought on anxiety as well as feelings of sadness and hopelessness.
Her hospice care team recommended art therapy to help elevate her mood. I was Barb’s art therapist.
I recently provided a music therapy visit to a woman named Edith, a 91-year-old hospice patient with dementia and depression. When I arrived, she was reclined in her padded geriatric chair with her feet supported and a blanket covering her lap. Her eyes were closed, and she looked relaxed and content. The room was quiet.
Her spouse Chester was present and his face appeared tired and tense. When I offered them a music therapy visit, he loudly replied, “Yes! I think that would be good! You never know what she’ll do!”
He shared that his wife was a singer, and although we did not suggest or expect her to sing or otherwise actively engage in the visit, we hoped she would hear us and know she was loved and not alone.
Many of us understand the joy, love, laughter and healing that our own animals bring to our souls. Imagine a high school club that allows teens to take part in enriching lives by promoting the unconditional love and healing of the human-animal bond through visits to nonprofit organizations such as JourneyCare.
The SOUL Harbour Ranch Animal Therapy Program has partnered with Barrington High School to create the SOUL Buddies Animal Therapy Club. Students are teamed with mentors and animals from the SOUL Harbour Ranch Animal Therapy Program and the Masonic Association of Service and Therapy Dogs (M.A.S.T.) to learn how to handle registered and certified therapy animals with hospice patients and others. Then we visit JourneyCare with miniature horses and dogs (plus mini donkeys in training!) and other organizations in the Barrington community.
I started as an art therapy intern with JourneyCare in July. I initially felt nervous to begin working in hospice. In school, we were taught treatment planning over the course of months ̶ but with end-of life-care, it was potentially an expedited timeline. I knew that with some patients, I might only get to see them one time. I questioned how much of an impact I could possibly make having only one session with someone. I worried about the power such limited time could have.
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.
In my work as a music-thanatologist, there are certain vigils that stand out in such a way that leave me feeling especially grateful for what we are able to offer patients and families at this most critical and sacred time of their lives. At these times, I feel that I am at the right place at the right time and I am grateful for the deep connections made. The following narrative is from one of those vigils:
There are many family members present when I arrive at Jason’s home: his wife, Kim, two daughters Lucy and Naomi, his son-in-law and a baby. The kitchen is abuzz with conversation and planning. The sound of a television is coming from Jason’s room.
When it is time for me to enter the small, dimly lit room, Jason’s JourneyCare nurse is measuring his heart rate and oxygen levels, which are regular. Jason is lying on his back, supported with pillows and slightly turned toward his left side. His brow is smooth, his eyes are closed. He does not rouse to speech or touch. By now, only Kim and their two daughters remain in the room.
For massage therapists who care for hospice patients, the work we do is full of ongoing lessons and gifts. I’m continually reminded what a privilege it is to meet and participate in some small way in the lives of our patients — such diverse, interesting, wonderful, ordinary and extraordinary people. There is a bond that develops with physical touch through the understanding that as their massage therapist, I am there to make them feel better. They guide me to the best way to help them and I am there to listen and respond.
I’ve had the honor of working with many patients with ALS (amyotrophic lateral sclerosis). Due to the challenges that befall these patients, massage is a service that often makes good sense. When their muscles stop working as they once did, we can help stretch and massage those muscles to make them feel better for a little while. One such patient gave me delightful gifts of imagination and laughter, and lessons about an unfailing positive attitude and outlook that I will never forget.
In honor of National Hospice and Palliative Care Month, we are celebrating the hospice and healthcare workers who hold the hands and hearts of our patients and their families every day. In tribute to the physical, emotional and spiritual work they do, each blog this month will bring you an up close look at how they bring compassionate care to patients and families in extraordinary ways. We hope you will be inspired by these stories which shine the spotlight on these everyday heroes.
As a music therapist for hospice and palliative care patients, I feel incredibly grateful each day that I have the privilege to do this unique work. This November I reflect on National Hospice and Palliative Care Month, and realize I can honestly say that I absolutely love my job and the work that we do here at JourneyCare.
In my journey as a music therapist, I experience so many touching moments with our patients. But what makes my work especially worthwhile are the “WOW” or breathtaking moments. And sometimes, when I least expect it, a “nice” visit can become one of my best.
I received an art therapy referral for Brittany, a 19-year-old on our pediatric hospice services living with a rare cancer that affects her connective and soft tissue. Ironically, the referral specifically stated she is not interested in making any art, but loves makeup.
The word “art” can be off-putting to a lot of people and can even prevent them from accepting art therapy services, so I was looking forward to working with someone with such a unique request. I reached out to Brittany’s mother to schedule a visit. Her mother reiterated early in our conversation that Brittany did not want to make any art, only makeup. I explained how I would respect Brittany’s wishes, that makeup is a creative outlet and our ultimate goal together is to use this creative expression to help support Brittany.