A Hospice Patient Revisits His Boyhood Past

On a tour of his boyhood in Danbury, Ed Siergiej look out the window of an ambulance at Sacred Heart of Jesus Parish, where he, his parents and brother were parishioners.

Above: Edward Siergiej looks out the window at Sacred Heart of Jesus Parish, where he, his parents and sister had been parishioners since 1925.

World War II paratrooper. Educator. Grandfather. Loyal friend. These are just some of the words that come up in conversations with Edward Siergiej’s friends and family.

Since August 2019, Ed Siergiej has also been a hospice patient with RVNAhealth. He has been homebound due to a hip fracture and other health issues this year that brought him back from Florida to live in Danbury with his son, Ed Jr., and daughter-in-law, Joanne. But he recently embarked on a special journey: A tour of some of the places and sights that framed his past in his hometown of Danbury.

“His desire was to revisit his early boyhood home, school and church in Danbury,” explains RVNAhealth Hospice Social Worker Cindy Merritt, LCSW. “This was about memories for both Mr. Siergiej and his family.”

Tour of Memories

The journey began on an early December afternoon when Mr. Siergiej, his son, and RVNAhealth Hospice Case Manager Kim Babson, RN, were transported by Danbury Ambulance Service to some landmark sites. 

One stop was the house in downtown Danbury that Mr. Siergiej’s father built in 1925 – and where Mr. Siergiej lived until he married Mary Alma Taylor in 1954, his wife of 53 years. They also visited Sacred Heart of Jesus Parish, where he, his parents and sister had been parishioners since 1925.

The “old” Danbury High School – now part of Western Connecticut State University’s White Hall – was another significant stop.

“My father was president of his class at the Danbury State Teachers College in 1948,” says Ed Jr. “He later went on to graduate from WestConn’s education program, and then taught and became a school administrator on Long Island.”

The Uncle Sam statue, a 38-foot monument previously located at the Danbury State Fairgrounds, and since transported to the Danbury Railway Museum, was another destination.

“My father earned a Purple Heart and Bronze Star when he served as a paratrooper and glidertroooper in the 194th Glider Infantry Regiment of the 17th Airborne Division during World War II,” says Ed, Jr. “He is a proud military veteran, and the Danbury Fair was part of his childhood, so this statue is an important part of his past.”

Make a Wish

Other places visited included Jimmie’s – a deli where Mr. Siergiej enjoyed coffee with friends for more than 20 years – and JK’s (famous for hot dogs). 

“My father was very grateful to everyone who made this trip possible, especially his nurse, Kimmie, and Rosa Ramirez, his nursing assistant.” says Ed, Jr. “It was a highlight of the last weeks of his life.”

Made possible by the Ridgefield Thrift Shop Hospice Fund at RVNAhealth, the outing was a gift to the Siergiej family.

“Since 1937, when the Thrift Shop was created to support the work of the District Nursing Association, now RVNAhealth, we have been grateful for this partnership,” says MJ Heller, RVNAhealth director of philanthropy. “This special hospice fund, established by our Thrift Shop friends, makes wishes and memories possible for hospice patients and their families at their most vulnerable time.”

Hospice Music Therapy Provides Comfort and Memories

RVNAhealth Hospice Music Therapist Tammy Strom strums her guitar.

Above: Tammy Strom, MA-MTBC, plays her guitar at RVNAhealth’s headquarters on Governor Street in Ridgefield.

When Tammy Strom, MA-MTBC, visits RVNAhealth hospice patients, she’s equipped with a distinctive set of clinical tools. A guitar. Piles and piles of sheet music and songbooks. And a variety of handheld musical instruments (think tambourines, shakers, bells and other fun accessories).

As our hospice music therapist, Tammy also brings healthy doses of compassion and positivity, alongside a dedication to helping patients experience the best possible quality of life in their final months, weeks and days.

“Many people have the misconception that working with hospice patients is somber,” she says. “But as a music therapist I get to see, and be a part of, a lot of life and creativity.” 

Individualized Goals and Approaches

When hearing the term “music therapy,” you might think of listening to music performed by someone else. Or the opportunity for a patient and perhaps the family to play, sing or even write songs. The reality is that it depends – on what goals are appropriate for the patient and family. 

Tammy shares how, in the case of a patient who had difficulty speaking, the simple act of slowing down a beloved song so she could sing brought “great joy” to both the patient and her family.

“If you’re with them for several months, as their condition progresses, it might be more about soothing with music that carries meaning,” she adds. She recalls this being the situation with a patient who was no longer alert, but the husband requested their wedding song from long ago.

“Musical interventions aren’t about being note-perfect, and it isn’t about teaching music,” explains Tammy. “It’s focused on providing comfort and memories. The goal might be to alleviate isolation; help a family connect with a patient who is unable to speak due to dementia; or distract from the patient’s physical discomfort or soothe the emotional pain the patient and family are experiencing.”

Music therapy can also be used as a restorative therapy in the bereavement process, especially with children mourning a loss.

The Science Behind Music Therapy

Hospice music therapy is administered by a credentialed professional who has completed an approved music therapy program and passed a national exam offered by the Certification Board for Music Therapists. In addition to being board certified in music therapy, Tammy holds a master’s degree in expressive therapies with a concentration in music therapy and mental health counseling.  A lifelong musician, she has sung with the Ridgefield Chorale for two decades, and has performed with Troupers Light Chorale in the past.

“Music stimulates many parts of the brain – from auditory to motor to emotional – and it is often one of the last memories to remain intact,” she stresses. “Many studies have found that music therapy positively affects patients’ quality of life by addressing their spectrum of needs: Physical, psychological, emotional, spiritual, social and family support.”

Also, as she is fond of saying, in the words of Hans Christian Andersen: “Where words fail, music speaks.”

Read More Hospice & Palliative Care Month Articles
Hospice is for Living
How Spiritual Care Providers Help Hospice Patients and Their Families

Hospice is for Living

The following essay was written by Keri Linardi, RN, BSN, PHN, CHPCA, Chief Clinical Officer of RVNAhealth.  Keri is, has been, and always will be a hospice nurse — in addition to the other roles she assumes. Hospice care is part of Keri’s being, part of her heart and the key to how she approaches her life.

This month, November, is Hospice and Palliative Care Month. In her words below, Keri shares her perspective on how hospice has impacted her and her children’s lives, and what we can do this month to plan for our own futures. 

Children raised in the home of a hospice nurse, like me, live in a world where death and dying, and ending suffering are talked about freely. During my years of night shifts, my young children would ask over breakfast, when I returned home, how many people had died last night, and we would talk about the beautiful deaths I was privileged to bear witness to.  

Keri Linardi, RVNAhealth CCO, with her children, from left, Antonio, Trevor and Tiffany, standing under a tree in front of a beach.
Keri Linardi, RVNAhealth CCO, with her children, from left, Antonio, Trevor and Tiffany.

Some of the stories were funny, like the husband who called me when his wife had passed in the middle of the night, only for me to discover, when I touched her and she sat up, that she was still very much with us. To the ones that touched too close to home, like the children near to my own children’s ages, so that when I went to the car after leaving their homes, I sobbed uncontrollably for what seemed like forever, for a life lost too soon and for families who would have holes in their hearts that would never be repaired, just healed with memories over time. 

We are a country that has plans for everything from birth, to vacations, yet we don’t plan for our own mortality. Dying sneaks up on families and throws them into decision making in moments of crisis — a time when decisions should not be made! 

Honoring Wishes Versus Making Decisions

Being a child of a hospice nurse is a double-edged sword: we never hang up the phone without saying ‘I love you;’ I have never sweated the small stuff with them, you want magenta hair?, it’s your head,  go for it! The flip side is we talk about mortality – particularly my own — over family dinners. This bothers my children a little, now ages 22, 19 and 13, but I need them to understand in simple terms what my wishes are if anything were to happen to me, and I need them to know that they will not be making decisions but simply honoring my wishes, decisions I have already made.  They also fully understand that dying is a natural part of living, the circle of life.  

In times of crisis, these ‘already-had conversations’ can be the greatest gift you give your loved ones, the gift of them knowing exactly what you would want to do.  The gift of them knowing that they are not making the decisions for you when you aren’t able, they are honoring you one last time by following your wishes.

As a hospice nurse, who has seen families grappling with decisions at critical times, this is a gift I would like everyone to give their loved ones.

But we aren’t there yet.

In this country we have disparities in care that interfere with individuals’ abilities to access hospice care when it is needed most. A study from Duke University in 2018 outlines that African Americans, 13.4% of the population, make up only 8% of hospice patients in America and are more likely to suffer from untreated pain; Hispanic patients, who represent 18.3% of the US population, make up 7% of hospice patients nationally. There are cultural barriers that interfere with their access to hospice care.   

We need to work together to change this and to provide culturally competent care at the right time – and we need to dispel the many myths around hospice care. 

The hospice Medicare benefit is a six-month – approximately 180 day — benefit of care that provides support from a whole team of professionals who wrap themselves around the patient and family to help them through one of the most challenging times of their lives. In my 26 years of nursing, I have never had a family tell me they came on to hospice too soon. I have had many families tell me, “If I had only known what hospice was, I would have called sooner.”

Care, Comfort and Treasured Moments for Patients and Families

Despite the 180-day benefit, the national average length of stay for hospice care in the country right now is 21.5 days; for the state of Connecticut it is 14 days.  This means that as a state, we aren’t doing a very good job at acknowledging life-limiting conditions head on — in a direct, kind, caring manner.  We are introducing hospice care too late in the process and we are denying patients and their families care, comfort and treasured time when they need it the most.

Often when hospice is offered as an option, it is presented in negative terms – “There isn’t anything more to do;” Do not resuscitate,” — when in fact there is a lot of living and a lot of joy that occurs in hospice.

When life-limiting conditions occur, we in hospice care talk about allowing natural deaths, managing symptoms, and living every day to its fullest. Imagine if you knew you only had six months left to live — would you do anything differently?

Hospice care has filled my cup these past 20 plus years in nursing. I am appreciative and grateful to the patients whose hands I have held; to those whose windows I have gazed out of, together enjoying their favorite hydrangeas; the families whose strength and grace I have marveled at as they cared for their loved ones through to the end. The kindness they have shown me as guests in their home.

I am amazed daily at the wonderful team of hospice people at RVNAhealth that come to work and give of themselves every day for our community and patients and families.  And to you, our RVNAhealth hospice families. I am in awe of you and thank you for allowing us to be guests in your home and into your lives during this very private time. I honor you during this special month.

In closing, I would encourage anyone who has not yet started their Advanced Care Planning conversations to use this November as your springboard to make the move! Start the conversation about Advanced Care Planning, visit our hospice and palliative care team at RVNAhealth. Let us help you start the conversation during non-crisis times. We have educational handouts to guide you, as well as team members to speak with. Nobody has ever regretted the decision to plan in advance. On the contrary. It’s a gift to yourselves and your loved ones.

To learn more, contact 203-438-5555 or visit our Hospice Services page.

Read More Hospice & Palliative Care Month Articles
Hospice Music Therapy Provides Comfort and Memories
How Spiritual Care Providers Help Hospice Patients and Their Families

How Spiritual Care Providers Help Hospice Patients and Their Families

Hospice chaplain holding hands with hospice patient

November is National Hospice and Palliative Care Month. Hospice is a service that helps keep those diagnosed with a life-limiting condition and prognosis of six months or less – and their loved ones – as comfortable and peaceful as possible in the patient’s final stages of life. But many myths surround hospice. For example, hospice is not a place. It is not just for cancer patients. And hospice has no religious affiliation.

Here, we address the latter misconception with a look at the role of the hospice chaplain.

On this rainy fall afternoon, RVNAhealth’s spiritual care coordinators, Carolyn Legg and Josh Smith, M.Div., have visited several patients and their families across the 28 towns where our agency’s hospice services are offered.

Though they serve in the same role, they generally only see each other once every two weeks, when the interdisciplinary hospice team (which includes a medical director, registered nurses and social workers) meets.

The job title that they share reflects how their role is not about religion.

“It’s about helping patients and their families find peace and comfort in their final days,” Josh explains. “Some of the patients I see are very religious, while others have absolutely no interest in matters of faith. Their faith (or lack of) informs our conversations. Fundamentally, spiritual care is about where you find meaning and purpose in life.”

Spiritual Care is a Required Hospice Discipline

Josh Smith, RVNAhealth Hospice Spiritual Coordinator
Josh Smith, RVNAhealth Hospice Spiritual Coordinator

Under Medicare guidelines, pastoral care is actually a required hospice discipline. Spiritual care coordinators must meet the patient and his or her family during the first five days of care. After that, patients have the right to decline spiritual care at any time. Carolyn and Josh visit most patients every two to four weeks, though some request their company more frequently.

“Some patients – even the very religious ones, are initially so physically uncomfortable, they can’t even think about pastoral care. They just want whatever it takes to alleviate the pain,” Carolyn explains. “But then once they get comfortable, they might ask for a visit. They have complete control.”

It’s important with patients at this stage of life, she adds. “With illness, many people have lost all sense of control – control of their body, their mind, and, as a result, their spirit. It’s hard, because a 98-year-old man confined to bed because of Parkinson’s still in his mind thinks of himself as a 26-year-old.”

Spiritual care interactions focus on three major themes:

  • Spiritual pain: Pain that comes from the “hidden” areas of our lives, and can cause emotional distress, agitation and even physical pain.
  • Meaning making: What were the most meaningful moments in the patient’s life? What do you hope your legacy will be? Would you like your family and friends present when you die?
  • Grief processing: Working in conjunction with the bereavement coordinator, the spiritual care coordinators help patients and their families process grief about their illness.

Though the patients whom Carolyn and Josh visit have been determined to have no more than six months to live, no two stories are alike. “Some people have a great fear of their impending death, while others are just so tired of being in pain, they’re ready to be done,” says Josh. “Some have strong support systems of family and friends, while some have extremely strained relationships.”

He also stresses that the spiritual care coordinator is there as much for families coping with a loved one’s deteriorating health as for the patient. “We build a relationship and trust with the family both during and after the illness,” explains Josh. “For up to 13 months after the patient’s death, under the guidance of the bereavement coordinator, we provide bereavement support to ensure that their emotional and spiritual needs are being met.”

Read More Hospice & Palliative Care Month Articles
Hospice is for Living
Hospice Music Therapy Provides Comfort and Memories

RVNAhealth Hospice Services to Host Holiday Support Group

A man is sitting alone on a couch, with a Christmas tree in the background. He is alone for the holidays.

Thanksgiving through New Year’s Day – the winter holiday season – can be especially challenging for people who are grieving the death of a loved one. From Nov. 19 through Dec. 10, RVNAhealth will hold a Holiday Support Group, meeting on Tuesdays, 1:00pm – 2:30pm.

The program is open to all members of the community and is intended to offer support through the holiday season for those who have experienced a loss. Cindy Merritt, LCSW, RVNAhealth Hospice Services social worker, will lead the sessions.

“Topics will include how to cope with the emotions and feelings of the season, how to handle holiday traditions, and what to do differently – and the same,” says Merritt.

Sessions will be held at the RVNAhealth Caregiver Support Room, 27 Governor Street, Ridgefield, CT. It is not necessary for participants to attend all four sessions; participants may attend any or all of the sessions. However, guests must register in advance by contacting Merritt at cmerritt@rvnahealth.org or (475) 529-5160.

An RVNA Hospice Volunteer Shares Her Story

RVNAhealth hosipice care volunteer

Above: Hospice Volunteer Julia Rothenberger (left) works with Hospice Program Coordinator Jennifer Zucaro

RVNA had the pleasure and good fortune to work with Julia Hergenrother this past summer as a volunteer with our Hospice team. Hergenrother, now a sophomore at Washington University in St. Louis, admits that she didn’t know what to expect when she first inquired about volunteering. But by summer’s end, one of her many takeaways was, “No matter how much time someone has left they have so much life to live before they pass.”  Before Hergenrother returned to school in August, she graciously agreed to share her observations on the volunteering experience. Enjoy her insightful story of why and how she came to become a Hospice volunteer, and the impact it’s had on her.

How did you find your way to RVNA? I was looking for unique volunteer opportunities that I would find fulfilling over the summer. Last August, I began my freshman year at Washington University in St. Louis. I was eager to join a couple of clubs, but I was worried that with academics and athletics I would be too busy to join the clubs that sparked my interest. After some consideration, I decided it was best to settle into my first year at WashU, and then plan on joining clubs my sophomore year. I was interested in training to be a part of a sexual assault helpline at WashU.

I was also interested in joining an environmental and sustainability club, another club where students visit an older adult housing facility, and a club called “Night Off,” where students babysit children with disabilities for a night while their parents go out. It was not until I started searching for job opportunities in April that I realized the most fulfilling work, and the way I would learn the most about myself, would be through attending training sessions and volunteering. I figured that if I decided to volunteer for places that had similar missions as the clubs I wanted to join, I would be prepared to join these clubs at the beginning of my sophomore year.

How did you get interested in Hospice? In my senior year of high school I developed a strong interest in TED Talks. I would listen to these talks while driving to school, heading to track meets and during long vacation car rides. Some of the ideas I encountered blew my mind; they were so fascinating to me because in high school most of the ideas we discussed in class were within the guidelines of the core curriculum.

On the other hand, in college I have been exposed to ideas outside the core curriculum. At WashU I took a course called “When I’m 64.” The course’s title was a play on the famous Beatles’ song. This course dismantled the stereotypes of aging and helped the students understand the death-positive movement. This class was so interesting to me because I have always enjoyed dismantling stereotypes and changing the way I view my experiences.

One of the class projects asked groups of students to work with companies in the city of St. Louis to make their building more age-friendly. After finishing this semester-long project, I felt more connected to the older adult community in St. Louis. This is where my interest in helping older adults started.

What do you do when you are not volunteering? Over the summer, I have gotten a chance to work in my mother’s ophthalmology office, and I have also volunteered for four different places within Fairfield County. (I am happy to share that all of these volunteer opportunities have helped me narrow down my interests and all relate to the clubs I was interested in my freshman year). This summer, I wanted my time to be spent wisely. I definitely wanted my time to be focused towards volunteering, but I also acknowledged that after a long school year I needed a break.

Outside volunteering I tend to spend my time reading books (my favorite this summer was “Just Mercy” by Bryan Stevenson) watching movies, going to the beach, biking, photography, doing yoga on the porch with my sister, and most of all, spending time with my family. I am so grateful to have been able to get the chance to volunteer for so many different organizations with beautiful mission statements, but I am also extremely grateful that at the end of the day my family is together sitting at the dinner table.

Has working in the Hospice field been as you expected? To be very honest, I had no idea I could ever volunteer for Hospice. I have always loved humanitarian and social work, especially because I have personally seen the positive change it can have in someone’s life. At WashU I am on the path to studying humanitarian and social work. During this school year, I figured the only way I would be able to get real, first-hand experience of social work would be through an internship through WashU, but the more I researched in April, the more I realized I could get this experience outside my school.

When I initially agreed to volunteer for RVNA Hospice, Cindy Merritt informed me that I would need to go through a 16-hour training program. This got me very excited because I knew I would have a chance to become more exposed to what RVNA had to offer, thus more interested in its mission and more interested in potentially pursuing this field after college.

At first, I figured that I would mostly be doing administrative work behind a desk. Even though I have been doing administrative work, I have also made relationships with all the friendly employees at RVNA. I never imagined the staff would be so welcoming. These men and women are a real inspiration to me, and I am so thankful to get a chance to see the impact they make on a daily basis. On top of this, I never expected I would be able to meet patients through the RVNA. These patients may benefit from my presence in their home, but it is a mutual relationship and I always feel very welcomed and thankful.

Has anything surprised you? I have been surprised by how welcoming everyone at RVNA is. I have also been surprised in the ways in which I have been able to help. After I became a certified RVNA volunteer, my goal was to be more of a help than a burden. I did not want the staff to have to take time out of their day to show me around and give me jobs that they would be able to do in half of the time, but my fears were unfounded. The Hospice employees have a lot of administrative tasks they ask me to complete that are easy to understand and that makes a big difference for them.

Most of all, I have been surprised at how much life there is in the Hospice program. Usually people who agree to Hospice services have around six months to live, but research has shown that these men and women live longer with the help of the Hospice. At first, I was surprised when Cindy Merritt told me this, but now that I have first-hand experience working for the Hospice I understand why this is true. No matter how much time someone has left they have so much life to live before they pass. The months before their death can bring great clarity and love. I am so happy I have a chance to be a part of this.

Will you take your newfound learnings back with you to college? College is a time for self-discovery, and I am starting to envision what profession I want to pursue after graduating from WashU. One of my biggest fears is following expectations, and falling into a profession that I truly do not love. I do not want to end up in a career I dislike just because I did not explore enough as a young adult. This is why it has been so important for me to get a taste of the opportunities available. Next spring, I will need to choose a major, and I am confident that my work this summer has given me more clarity about the areas I would like to study.

I am going to try to encourage my friends to take part in training programs and volunteer opportunities during the school year, internships or via study abroad opportunities. I have found that while volunteering, I learn far more than I would have expected.

Can you tell us a little more about yourself? Any plans, hopes or dreams for the future?! I would like to have an answer to that question, but to be honest I still do not know. At different points in my life I have thought about becoming a motivational speaker, a college track coach, a neonatal doctor, and a therapist. I do not want to limit myself by imagining what I want to be. I want my career to come organically, like my interests. For right now, I am happy with the path I am on, and the work I have put in to get here.

Volunteering at RVNA can take many forms, ranging from administrative help (e.g., data entry, event support) to in-home help (e.g., visiting, pet care). If you’d like to learn more, visit rvnahealth.org/volunteer/ or call 203-438-5555.