Take a moment to recall how you became part of our JourneyCare community.
Maybe you heard of us at a community education event on advance care planning. Or you learned about JourneyCare through a friend or neighbor who was touched by our amazing team of employees and volunteers. Or maybe you simply stumbled upon this blog and became inspired to engage.
However you joined our JourneyCare community, it was likely thanks to word-of-mouth and personal experience. As a friend of JourneyCare today, you have a personal understanding of the exceptional care and support we provide for patients and families dealing with serious illness and end-of-life issues.
Recently at our Hospice CareCenter at Northwest Community Hospital we cared for a patient, Robert*, who was formerly at a nursing home. He was without family. The only friend we knew about, who was responsible for his power of attorney, lived some distance away. Because Robert was minimally responsive and had not had any visitors, we did not know much about him. This is always a little difficult because we want to understand the patient as a person, to put a "story" together of a life. One of the only details we knew about Robert was that he was a veteran of World War II.
Several years ago, as part of a corporate walking challenge for hospital employees, I invited a Buddhist monk, Bhante Sujatha, to lead a group in a meditation walk at a beautiful nature preserve labyrinth. The labyrinth is circular in shape with winding paths that draw you back and forth until eventually you reach the center. It is said that the back and forth motion engage both sides of the brain and create a sense of calm, somewhat like rocking a child in a cradle or gliding through space on a swing. Because so many of us were making our way through and we all began at the same time, we regularly needed to move aside, as people passed us on the way back from the center.
Soon after I started working full time in hospice care as a chaplain, I made an initial visit to a patient and her daughter. Little did I know that after 144 visits, four Christmas celebrations, four birthday parties and countless other “just because” fiestas, I would pray the final words of commendation at her graveside with tears in my eyes. As a chaplain I don’t have favorite patients, but there are those that attach to the heart in special ways... especially after five years of visits, laughs, cups of tea and tears.
A little girl giggles with uncontrollable excitement at seeing Santa walk down the stairs...
A pre-teen boy anxiously awaits as the announcer calls the next Bingo card selection...
And, a toddler smiles as she clutches her newly acquired baby doll...
What do all of these things have in common? The annual JourneyCare All About Kids Program Holiday Party! With the theme of “Walking in a Winter Wonderland,” nearly 200 children and their families from our All About Kids palliative care and hospice program were recently treated to food, fun, presents, and a special visit from Santa at the Stonegate Banquet and Conference Centre in Hoffman Estates.
While the death of a loved one is one of life’s most difficult times, the holidays can compound our sense of loss and isolation. When we're experiencing the pain of grief, the last thing we want to do is participate in any kind of holiday celebration. We want the pain to end, and we can’t imagine being around others at a time that is supposed to be full of joy when we are so burdened with sorrow.
This is a normal way to feel, but since we can’t cut out the calendar from late October through early Januaryof the next year, it might be helpful to modify our plans, and most especially to take good care of ourselves.
Consider the following suggestions:
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.