For National Professional Social Work Month, JourneyCare Social Worker Rachel Risler explains how hospice social workers provide compassionate care and support to patients with dementia and their loved ones.
I've been working as a social worker with the elderly population since 2004, the last five years at JourneyCare. I became a social worker specifically to work with patients and families affected by Alzheimer’s disease and other dementias. Since making the move from long-term care to hospice care, I have been honored to share the journey of end-stage dementia with patients and families.
Lisa Genova, the neuroscientist who engaged readers with “Still Alice,” her riveting tale of a professor struggling with early onset Alzheimer’s, has now written an equally riveting tale of an acclaimed concert pianist, Richard, struggling with the terrible diagnosis of ALS — that not only takes his life, but even more importantly to him, his career. Her new work, “Every Note Played,” puts a human face on this unrelenting disease.
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.
This February 28, the JourneyCare Foundation is proud to invite you to 'Love, Loss, and What I Wore,' a play written by Nora and Delia Ephron, based on the book by Ilene Beckerman. It is organized as a series of monologues and features an all-female cast. The women reflect on relationships and what they wore, using the wardrobe as a time capsule of a woman’s life. JourneyCare Board Member Stephanie Leese Emrich will direct this production.
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.
“Death Over Dinner.” No, it’s not the title of a new “whodunit,” but rather the name of a nonprofit organization whose mission is to encourage the one conversation most of us never have: the one about death.
They have a point. When I was young, my friends and I talked endlessly about the meaning of life. But we never talked about death. We still don’t. If we come close, it’s only to talk about the paperwork—advanced directives, living wills, revocable trusts—but not what it means to die. No doubt, we will approach the issue when someone close to us nears the end of life, but in the midst of caring for their needs or coping emotionally ourselves, we may not be capable of pondering such a big question.
JourneyCare's Soup & Stories initiative began five years ago when JourneyCare Juniors and adult volunteers from Barrington delivered containers of homemade soup, fleece blankets and conversation cards to the homes of JourneyCare patients on Dr. Martin Luther King Jr. Day.
Whenever Dr. Martin Luther King's Day of Service takes place, I am reminded of all the ways I can serve the community and make the world a better place. As a JourneyCare Youth Advisory Board Volunteer, one activity I love to participate in during this holiday is the Soup and Stories deliveries. If this initiative has taught me one lesson, it’s that a little can go a long way. Just a small package filled with soup, a blanket, and a card can brighten someone’s day and bring love, comfort and joy to a home.
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.
I think this really is the most special time of the year, particularly because of the holiday music! Music and singing have been part of my life since the sixth grade, when I became involved in the school choir at the urging of my wonderful music teacher. Singing plays such an important role during the holidays and it has some amazing effects on our wellness.
Holiday music inspires us to raise our voices and creates a fun sense of camaraderie when we gather spontaneously around a piano to belt out “Jingle Bells,” “Over the River and Through the Wood,” or any other favorite carols. Those who routinely sing together in a group, as when part of a chorus, know it creates a tight social bond as every voice works together to create a harmonious sound. (Shout out to the JourneyCare Choir, which includes staff members from throughout our agency!) Even singing in your car to favorite holiday songs on the radio can be uplifting!