“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!
Ask people how they feel about the holidays, and you’ll get a variety of reactions. It may be because, even when things are going well, the holidays can present additional demands that increase stress levels and anxiety. If you’ve recently suffered the loss of a loved one, that ordinary holiday stress can quickly turn into a complex, overwhelming, exhausting endurance race.
After a loved one dies, it automatically becomes a year of “firsts.” The first anniversary of every event no longer experienced or celebrated with the person who is now glaringly absent. What was once a reliable or comforting ritual may suddenly feel like an emotional roller coaster of unwelcome change. Grief triggers may be seemingly everywhere: old movies, familiar scents, a favorite song on a playlist. For many, the initial reaction is to avoid and distract. Although it’s a natural response, over time it becomes increasingly ineffective at moving through the grief.
Perhaps when coping with grief during the holidays, instead of connecting with friends, family and others to primarily distract from grief, consider a choice to deliberately “include” the loved one who is no longer present, with intention.
Since joining JourneyCare as a hospice volunteer this past year, I’ve had the privilege of serving as a care companion for two patients so far and I am thoroughly enjoying my role. So, when I saw a request for an “elf” to accompany Santa to bring an early Christmas to a pediatric hospice patient this October, I immediately wanted to help.
Cielo was 17 years old suffering from a glioblastoma with her condition advancing, so she wished for an early Christmas. I was honored to be selected as a helper elf to accompany Santa and bring some Christmas joy to Cielo and her family.
For National Hospice and Palliative Care Month, JourneyCare is celebrating our thoughtful and caring staff and volunteers, who provide comfort and exceed expectations to make the holiday season joyful for our patients and their families.
As a Jewish Care Ambassador for JourneyCare, I’ve often thought of patients in our care during the holiday season and have felt badly that some of them, due to their advanced illnesses, are unable to enjoy the holidays to their fullest extent. This year as December begins, patients in our Jewish Care Services program will celebrate Chanukkah beginning the evening of Sunday, December 2 continuing through Sunday, December 9. Chanukkah is called the Festival of Lights, which is considered a joyous holiday and meant to remind us of the golden menorah in the time of the Temple with the miraculous jar of oil that lasted eight days.
For National Hospice and Palliative Care Month, JourneyCare is celebrating the many innovative and creative ways our staff and volunteers help provide care, support and companionship to positively impact the lives of JourneyCare patients and their loved ones. Learn more at journeycare.org.
If you ever run into people carrying mud-covered shovels at the front entrance of The Pepper Family Hospice CareCenter in Barrington, you’re seeing JourneyCare volunteer gardeners at work. We volunteers have designed and planted the front entrance of CareCenter for the past four years. We also arrange the patio planters and undertake several other creative garden projects that welcome patients and their loved ones to JourneyCare.
We are a team that tries to make things beautiful with plants. As members of The Garden Club of Barrington, all of us bring different strengths and contributions to our work at the CareCenter. Some of us are really good at design, others are skilled at finding donations, some are very knowledgeable about plants — and we all like to dig in the dirt. We also all have experience interacting with JourneyCare patients and enjoy visiting with families who stop by when we are working. Gardening seems to be a great connection for visitors to share stories about their loved ones.
For Veterans Day and National Hospice and Palliative Care Month, JourneyCare is honoring our veteran patients and celebrating the volunteers who dedicate their time and talents to our patients, patient families and the staff throughout our agency. We are so grateful for our generous volunteers every day of the year!
It’s estimated that one out of every four dying Americans is a veteran.
This Veterans Day and National Hospice and Palliative Care Month, JourneyCare is very proud to be one of more than 2,400 hospice organizations in the United States participating in the We Honor Veterans initiative to honor and care for veterans and their families. Started by the National Hospice & Palliative Care Organization (NHPCO) at the request of the U.S. Department of Veterans Affairs, the intent of the program is to identify when a veteran is enrolled in hospice care, connect veterans and their families with any benefits for which they may be eligible, and take this final opportunity to honor and thank those who served and sacrificed so much.