Please join me as we travel through a day in the life of a hospice music therapist.

Our first visit of the day is with a patient living at home. For over 30 years, this individual and her child performed together on dueling pianos. They held a high caliber of music and discovered a depth of relationship beyond spoken words. As we come to visit them, the individual is only talking intermittently now and not able to play the piano. However, they were able to connect again within the visit by playing the reverie harp together, through the singing on syllables, and through the family dedicating songs to her. We end the visit with me singing back the family’s words to their loved one on hospice care:

You are loving and sweet
You are musical, creative
You are beautiful, wonderful, kind
And we love you

The second visit of the day is for a young child whose mother is on service. The child had recently been reported as going to the bedside and stating “mommy, please don’t die.” We come in, bringing a wide range of instruments to grab the young one’s attention. We sing “Let It Go” and talk about all of the changes that happen every day. And by the time we’re done chanting about emotions and changes, the child acknowledges her mother is dying and says “when I feel sad I can talk to Teddy.”

brittany doing music therapyThe third visit is best described by the reflections of the daughter, who wrote in to say: “The music therapy was an amazing gift to both of my parents. Much of what we wanted to say to my mother ('you can let go, we love you, we will be OK, you did a good job') Brittany sang to my mother on her final day. She relaxed and peacefully passed one hour later. My father and mother shared songs and memories which the therapist made into a CD – their voices and stories are priceless. We will be playing the CD at their celebration of life and I have made copies for all family and friends. Words cannot express my gratitude—music touches a special place in our hearts and soul. My hope is that every family have this opportunity.”

And the last visit of the day is a mother and friend who wants to create a living legacy for those she will leave behind in this world. Through the discussion of Van Morrison lyrics, a safe space, and a recording device, we capture her voice and words as she shares final thoughts with her daughter:

"Hi Heidi, its mom. I love you so much! Be strong, okay sweetheart? I'm okay. I'll watch over you and Dad. Don't worry, be strong. You've been the love of my life, all my life since you were born sweetheart. You make me very happy, you and Dad. I love you — Mom"

Mom and her daughters at Bruns House wedding

I first met Tonya on a Monday evening as I was preparing to go home for the day. Her mother had been admitted to Bruns House earlier that afternoon. Tonya felt it was important we know in advance that she would likely be wearing a white dress and not to be alarmed—she was just planning to be married! This is how I learned about Tonya’s engagement to Sho.

Tonya emigrated with her parents from Taiwan in 2003, along with her sister Esther and their brother Jimmy, who was just a toddler. Her fiancé Sho is from Japan where his parents still live.

Family wedding at Bruns HouseTonya and Sho’s wedding plans were already underway when a challenging series of events occurred. Tonya’s mother Debbie had been battling cancer when the family planned a trip to London in August 2018. Debbie had arrived ahead of the family when she received the news that her husband had been hospitalized due to a stroke. As Debbie flew back to the United States, she experienced a pain crisis related to her own cancer. Upon arrival, she was immediately hospitalized, but in a different hospital than her husband.

Tonya’s father was eventually discharged to a sub-acute facility where he remained in a vegetative state with a tracheostomy. The family’s attention then turned to caring for their mother at home. When it became clear that this was more than they could manage, Debbie was taken to the hospital where it was determined that the best place for her was the Bruns House for end-of-life care.

The wedding plans were now accelerated to ensure that Tonya’s mother would be able to see at least one of her daughters get married. Tonya explained why this was significant. Debbie’s own mother had died before seeing Debbie get married, so Tonya was in a position to prevent that from happening again.

At this time, Tonya and her sister were not only caring for their mom but also managing the family business – two family-owned and operated preschools. Tonya had a job of her own, while Esther was a student at UCSB. Their younger brother Jimmy was in high school. Esther would stay with Debbie at Bruns House while Tonya remained at home with Jimmy, trying to keep his world as normal as possible. In the mornings, we would see Esther in the kitchen making tea and working on her laptop—juggling between her own schoolwork and business obligations like managing payroll. Despite their heavy responsibilities, both daughters were always ready with a smile and expressions of gratitude for the care and support their mother was receiving.

So, when Tonya approached me that Monday evening, my first instinct was to help with their wedding plans. Tonya said she and Sho would get the marriage license the next day and work out the rest from there. Recalling all the various events we have held at Bruns for our patients and families, I let Tonya know they were welcome to have the wedding at the Bruns House—either in the garden, weather permitting, or indoors. Tonya was not expecting the offer and asked several times if I was being serious.

bruns wedding mom daughters 300The plan continued to evolve as Tonya quietly put everything in place. They got the marriage license on Tuesday and I heard from our evening shift that Tonya had brought in a few dresses on Wednesday to try on for her mother and sister. Our music therapist Brittany worked with Tonya to arrange the music for the ceremony, music meaningful to both Tonya and her mother. I was also thrilled to find out that we could provide a professional photographer for the event!

Even more meaningful was the fact that the day of the wedding would also be Debbie’s birthday. This meant that every wedding anniversary would also be an honor to her memory. Last but not least was the cake which they decorated on the spot. Everything seemed to be coming together seamlessly—it may have set a record for what can be accomplished in just three days.

This wedding came at an opportune time for the Bruns staff. The house had been full for quite some time and there had recently been several emotionally challenging patients – including Tonya’s mother, at just 57 years old. Hosting a joyous event gave a much-needed boost to the staff.

The Thursday of the wedding arrived and once again Tonya was hard at work. She and Sho set the dining room table with photos, flowers and treats for their guests and hung a wedding banner above the French doors. Our staff helped in various ways, too. Our licensed vocational nurse Prab did the bride’s and her mother’s make-up; team assistant Dawn and volunteer Lynn helped with the veil; we set up chairs with an aisle down the middle for the bride to walk down. The nurses helped Debbie into a wheelchair and Esther wheeled her out. She was ready to respond when the minister asked who was giving away this bride. She was able to whisper, “I do”.

The bride was beautiful, the groom handsome and the mother glowing. The day was full of joy, laughter and tears, as well as the typical wedding day glitches – Tonya’s shoes were not delivered, so she stood at the alter in flip flops! It didn’t matter — the mother of the bride was glowing with pride.

Debbie died just five days after the ceremony with her three children at her side. The minister and wedding guests returned to Bruns that day to share a brief memorial in the patient’s room. It was moving for all of us there that day to see the love of Debbie’s family and friends in another context. We all shared a moment of silence with them as they sang “Amazing Grace.” It was a truly magical experience at Bruns House.


 

On February 18, 2019, Hospice East Bay Volunteer Bob Ellis was interviewed by Stephen Burchik for the CCC-TV program "Veterans' Voices." This is an edited transcript of that interview.

Tell us about your military service.

I enlisted in the Marine Corps in July 1967 and reported Parris Island, SC, for boot camp training. After boot camp, I completed Field Radio Operator training at Camp Pendleton, CA, and was assigned to the 9th Marine Regiment in Vietnam. After being in-country for five months, I was assigned to be the radio operator and shotgun for Regimental Commander Colonel Robert H. Barrow.

Col. Barrow was a highly-decorated veteran at Chosin Reservoir during the Korean War. He was also a decorated Marine officer in World War II, the last Commandant veteran of that war. After his assignment overseas, Col. Barrow returned to work at the Pentagon. In 1979, Barrow, then a General, was promoted to be the 27th Commandant of the Marine Corps. Being so closely associated with General Barrow was a privilege and an honor.

For my service in Vietnam, I was awarded the standard war-service medals, along with the Vietnamese Cross of Gallantry with Bronze Star and the Navy Achievement Medal with Combat "V". After Vietnam, I was sent to a small base in Norfolk, VA. The Commander-in-Chief of the Atlantic Fleet was based there, along with NATO Atlantic headquarters. I was assigned to a Security Guard detachment for the base, where I served as Sergeant-of-the-Guard. It was a top secret assignment due to the intelligence work that was done there. I was discharged there from active service in July 1970.

Tell us about your volunteer work with veterans.

I volunteer with Hospice East Bay, which was established in 1977 to support patients who wanted to die at home. Their mission is to care for patients through the end of life, easing fear and suffering, while also ensuring that patients and families retain dignity and control over their personal choices. To become a volunteer, you must complete 30+ hours of training and pass a series of tests.

There are presently 180 volunteers at Hospice East Bay, seven of which are veterans. I have also volunteered with Yolo Hospice in Davis, CA, completed hospice training with the Sacramento Hospice Consortium, and was certified as an End-of-Life Specialist by Teaching Transitions.

What is Vet-To-Vet?

Hospice East Bay's "Veteran-to-Veteran" program was established to recognize and honor our veterans. While many of our WWII veterans have died, many Korean War vets are still coming onto hospice care. Many more Vietnam vets, our largest segment to the veteran population, are coming onto hospice care as well.

Veteran Pinning CeremonyVeteran volunteers may sit at bedside with veteran patients, to provide relief and support for caregivers, or provide support for spouses and families of veterans. Veteran patients are offered the opportunity to be honored with a "pinning ceremony," in which the veteran is presented a certificate which honors his or her military service, and is given an American flag and lapel pin. We also conduct pinning ceremonies at many private residential care facilities throughout Contra Costa County each year, during the celebration of Veterans Day in November. These ceremonies are powerful, emotional, and celebratory events that are very well-received by the veteran patient, their families, and their friends.

How did you get started in this program?

Hospice volunteers who are also veterans are asked if they would like to participate in the "Veteran-to-Veteran" program and I decided I would like to participate. We met with Noga Wellner-Kessler, Master Social Worker & Veteran's Coordinator for Hospice East Bay and completed another short training program. Noga is also a veteran of the Israeli Army Medical Corps.

Did you have any personal experience as a caregiver?

In 2001, my dad became ill in upstate New York and I took a leave of absence from work to assist him. He was soon admitted to a local hospice program and I cared for him until his death four months later. I was so impressed with the work of the hospice people, the care that they provided and the support that was available.

What were your initial concerns when you started?

I initially was concerned if I was emotionally strong enough to provide support to patients reaching the end of life. Although I had seen and been close to many deaths during Operation Dewey Canyon in the Ashau Valley (also known as the "Valley of Death”), hospice volunteer work is quite different. After receiving training from Hospice East Bay, I knew I was prepared for some difficult times. With my Buddhist background and training, I know that impermanence is an ever-present event. I believe that volunteer work prepares me with dealing with my own death.

We understand that you are involved in Visits and Vigils. Can you describe these activities?

Visits are requested by the Social Worker whenever he or she determines that a volunteer visitor would bring comfort to the patient, or to provide a respite for the caregiver to go grocery shopping, run an errand, or just have some free time. The visits can involve reading the newspaper to the patient, playing a card game, listening to music, watching TV, or just quietly sitting with the patient. A visit is usually four hours in duration.

A vigil is requested by the family when a patient is determined to be within three days of death. Sometimes a family member requests a vigil in order to have support during this difficult time. At other times, family members may be located in another state and request that someone be with their loved one during their final days and hours. Vigil watches are assigned for two-hour intervals among the vigil volunteers.

What is the reaction of veterans and their families when you visit?

In almost all instances, veterans are receptive to our visits and enjoy talking about their military service. We exchange memories of our military service and provide them with comfort and respect.
The families are also very appreciative of our efforts. Many of our ceremonies are attended by spouses, children, grandchildren and close friends.

What are a couple of the best memories you have from your activities?

Each and every situation is different. Many of our activities bring tears to our eyes, pain in our hearts, and will always be remembered. I have found recently that ceremonies for Marine Corps veterans of Vietnam have a special meaning for me. Semper Fidelis is a motto that all Marines retain, so being able to comfort, assist and recognize those that have gone through similar experiences in their service is a special time for me.

If a veteran is interested in helping, how should they prepare?

I have found hospice volunteering work to be a very rewarding opportunity to support someone as they approach the end of their life. I believe you must be emotionally strong, compassionate, and be willing to be a good listener. You must know that your visit is not about you.

If anyone is interested in volunteering for Hospice East Bay, the first step is to complete the initial training. Upon completing this training, you will be given the opportunity to join the Veteran-to-Veteran program. Hospice East Bay is located in Pleasant Hill. They can be reached at (925) 887-5678.

In February of 2019, the wife of one of our patients addressed the staff at Hospice East Bay to express her gratitude for the care we provided to her husband of over 60 years. This is what she said that day:

Good afternoon. I’m Sandy and I would like to begin by thanking my niece Susan, also Susan Levitt and all of you for the opportunity to come here today to express in person, my heartfelt thanks and gratitude for your hospice services.

My initial perception of hospice was that it was a place where one comes to die. With that thought in mind, I was totally unprepared for the level of dedication, kindness and compassion shown by every person we came in contact with during my husband’s illness.

John, my husband, was hospitalized several times in late fall of 2017 for infection problems. He was diagnosed with Myelodysplastic Syndrome (also known as MDS) and later diagnosed with Aplastic Anemia—both conditions where the bone marrow produces irregular and poorly formed red blood cells, white cells and platelets. As a result, he was given injections to stimulate the bone marrow and ultimately in December of 2017, John started receiving blood transfusions twice weekly of both red cells and platelets. This continued for approximately ten months.

In early October of 2018, John’s condition rapidly deteriorated and he experienced extreme weakness and become prone to infections. At this point, again after several more hospital stays and bouts of rehab, John’s hematologist and oncologist discontinued the transfusions and referred John to hospice. Nothing more in the way of treatment could be done for him. That same day, the hospice nurse came to our home and explained their care and treatment and that I would be caring for John at home.

After the first night, I realized I was not emotionally or physically able to care for a large six foot tall man who was very susceptible to falls. In a panic, the following morning I frantically called Susan, my niece, (who was in Seattle at the time). Her immediate response was that the Bruns House operated by Hospice East Bay was the only place for her Uncle John to be cared for. With Susan Levitt’s help and that of Randy, the liaison nurse, John was transported and admitted that afternoon, October 24th to the Bruns House in Alamo.

From the moment my son David and I walked through the door at Bruns House, we could feel the care and compassion of everyone we met. During the admission process, we were very well briefed as to the Bruns care and treatment plan for John. We were most impressed that they wanted John to be treated with dignity and respect and their main concern was to keep him as comfortable as possible and free from pain. At the same time, they emphasized that caring for the family was equally important. They were there to care not only for the patient but to be there for our family as well.

Bruns House LabyrinthWe met with several nurses and members of the staff, including Elizabeth, John’s social worker, and Dr. Rana, the physician caring for John. Both my son and I cannot say enough about the care and concern of Dr. Rana. She was always available to answer our questions and her dedication and concern for John’s comfort was beyond our expectations. The entire staff was there to make whatever time John had as comfortable as possible, including letting us provide John his favorite brandy and rocky road ice cream, both of which John declined, but it was a victory for him nonetheless.

John was a very private, proud and independent person and he had so many periods of being combative. These periods were always met with “not to worry, we are here to help and we understand his frustration and longing to go home.” The level of care and concern for John never wavered. Even when it came time for us to leave, my son and I always felt John was in excellent, caring and very capable hands.

We want to give a special thanks to Ben, on the spiritual care team. He came by several times with his guitar and sat with John. He sang and played some of the old beloved hymns, including “How Great Thou Art,” one of John’s favorites, and I know Ben indeed lifted John’s spirits.

I particularly want to thank Hospice East Bay for providing bereavement support services and grief counseling, both of which I will be availing myself of in the coming weeks. John and I were married almost 61 years, and as his caregiver for the last several years, taking care of him was my entire goal. Now, I look forward to using those services as I grieve the loss of my dear husband. Also of value to me was the booklet provided by Hospice East Bay “When the Time Comes - A Caregiver’s Guide.” I found it to be very helpful in dealing with the final stages of life.

Even after John passed away on Tuesday, October 31st, after six days in hospice care, David, Susan and I were again surrounded by the staff with many hugs and heartfelt expressions of love, support and sympathy, words fail me as to how much that meant.

In summary, hospice was the best possible choice for us to make for John during this difficult time. David and I wish to thank each and every one of you for your kind and compassionate care of our loved one. You are indeed God’s angels. May God bless each of you. Thank you.


 

It was another successful year for Hospice East Bay’s Giving Tree project! At the holidays, the Giving Tree project amplifies the kindness that Hospice East Bay staff and volunteers spread every day in patient homes and facilities. During the month of November, our clinical team members recommend patients, family members or caregivers who would appreciate a special gift during the holiday season. Each recommendation is placed on our Giving Tree for volunteers and staff to choose from.

This year, 125 gifts were given out! Below are some of the sweet comments received by volunteers who delivered gifts just after Thanksgiving.

“Patient said he had just lost his scarf and this is just what he needed. He kept saying how uplifting hospice was and he thought the entire organization was wonderful. I left him with the scarf wrapped around his neck and told him he looked very ‘dapper’ which he happily repeated.”

“Cat books! This is so personal, it must have been that lovely Martha. I love them.”

“Upon receiving a soft, stuffed horse, the patient said it will remind her of her former live horses. She said, “I wish my husband could have seen this.”

“My patient was totally delighted and thrilled with her shawl. She said it was so beautiful, warm and comfy. She kissed my hand in thanks.”

“I delivered a warm, cozy, lime green throw blanket to my patient. When she opened the gift she had tears welling in her eyes and was ‘so amazed’ at the kind hospice team who just keeps giving and giving. In her mother’s presence, she shared that since coming on hospice she has never felt so taken care of and just can’t believe how much hospice loves her. She was so cute in that she started to discuss a plan to get a thank you in the mail right away. Such a pleasant experience for me to see the powerful influence of the entire hospice team. An added touch was that the color of the blanket was the EXACT hue of her outfit, which made her grin even broader.”

Thank you volunteers and staff for lighting up our patients’ lives with kindness!

Hospice East Bay has begun a new grief support group for millenial adults that features hiking through the Bay Area’s many beautiful parks.

Young adults face unique stressors. According to the American Psychological Association, adults aged 18-30 are experiencing more stress than any other generation. Millennials have the highest rate of poverty, unemployment, and student loan debt of any preceding generation in the modern era. The average college debt for a millennial is around $33,000. According to U.S Census data, 40% of unemployed workers are millennials.

Imagine adding the death of someone important in your life to these already overwhelming challenges. Research indicates that young adults have unique bereavement needs and are a group that does not fit into the support group model for older adults. This same research shows that this demographic tends to “fall through the cracks” receiving little to no bereavement support, with sometimes devastating results. Bereaved college students suffer academically; have higher rates of dropping out of school, and an increase in suicidality. Most millennials do not have experience in a traditional group counseling setting, which often makes them reluctant to share their feelings with strangers. They prefer peer support and activities which get them outdoors.

Hiking Through Grief is an active monthly support group that meets on the third Saturday of every month from 10am-1pm to hike trails in the Bay Area. It is currently the only regularly occurring young adult grief group in the region.

The group meets in a different location each month and hikes for 2-3 hours with a snack break in the middle. During the break, hikers are encouraged but not required to share their stories and insights. So far the group has hiked in Tilden Park in Berkeley, and in Redwood Regional Park in Oakland where they observed millions of wintering ladybugs.

The hikes are a wonderful way to get participants moving, see some beautiful scenery, meet other grieving young adults who “get it,” and build a network of support that can be so critical in navigating the challenges associated with grief. Most of all, the hikes are fun and the response has been overwhelmingly positive!

Our group now has over 200 members on Meetup.com. Typically, each hike has between 7-15 participants. If you are a grieving young adult, or know someone who is, come check us out. Our hikes are casual, fun, and relaxing and you would be very welcome. For more information, please contact Hospice East Bay’s Bereavement Department.

By Bess Chosak, Hospice East Bay Volunteer

My first glimpse of my newly assigned patient was of a small bundle of a lady—a crown of snow white hair peeking out from a soft grey blanket wrapped around her as she snuggled into a corner of her sofa. I was assigned to bring “music and memory” to this 103 year-old woman who was on hospice care. All I knew was that she had some level of dementia and didn’t talk much at all.

Doris DayAfter a quick introduction by her live-in caregiver, I sat beside her and unfolded my small bag of equipment—two headsets and an iPod loaded with music for her. She looked at me quizzically, as I tried to explain what I was bringing to her. As soon as our headsets were adjusted, and the music was turned on, she began to smile and sway with the music of “The Tender Trap” by Frank Sinatra. Soon we heard the beginning of “Que Sera, Sera” by Doris Day. At this, her face broke into a beautiful wide smile, and when the chorus began, she broke out into song and I joined her. The two of us belted out the old familiar phrases—“Que sera, sera; whatever will be will be; the future’s not ours to see; que sera, sera.”

I was shocked at the loveliness of her singing voice—really quite extraordinary. Her caregiver of eleven years, who had retired to the next room, came rushing in to see who was singing like that. I looked at her in wide amazement, then back to my patient—all three of us had tears in our eyes. Here was something that this dear lady could express, without hesitation, without confusion.

I continued to play songs from the playlist—by Nat King Cole, Frank Sinatra, Glenn Miller’s Orchestra—but I kept coming back to the Doris Day song, and each time my patient would sing loud and clear whenever the chorus came along. I could not help but reflect on the meaning of that song—that we were just there, in the moment together, in an expression of acceptance of whatever will be. I knew very little about this person. She knew nothing about me, except that I was from Hospice East Bay. But together, the music took us to a place of genuine companionship and pleasure.

After 30 minutes, it was time for her lunch. I told her I would come again, and she held my arm tightly and said, with her eyes and her voice, “YES!”

The magic of music, the parts of our minds touched by and responsive to music, seem to supersede the fog of “cerebral degeneration,” which is her diagnosis. I look forward to finding more moments like this with her on subsequent visits.