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Belle Swersey enjoyed the Memorial Day parade with the Disney princess Elsa.
By Cindy Cantrell
GLOBE CORRESPONDENT JULY 07, 2016
Courtney Arsenault, a child life specialist at Good Shepherd Community Care in Newton, describes her 5-year-old oncology patient Belle Swersey as a “beautiful, upbeat, silly, and playful child who is quick to engage and has big dreams.”
One of those aspirations, recently shared with her by Belle’s father Jonathon Swersey, was to participate in a parade with a Disney princess to spread pediatric cancer awareness.
Soon afterward, Arsenault began mobilizing others in the community to make Belle’s wish come true.
Arsenault’s call to the City of Newton, where the family lives, was directed to Mark Kelly. The director of special needs for the Newton Parks and Recreation Department was immediately receptive to involving Belle in the city’s Memorial Day parade, despite having only two weeks to pull it off.
“Mark was amazing. I have no other words,” said Arsenault, who provides primarily home-based care to Belle through Good Shepherd’s free Pedi Pal program for children. “I was a little nervous reaching out, but I advocated for Belle because it’s what she wanted and deserves. The city came through in a strong way.”
Initially stunned by the act of kindness, Swersey and wife, Julie, then became concerned that Belle’s participation might detract from the rightful focus on the city’s veterans. Reassured that this special guest was most welcome, the Swerseys shared the good news with their excited daughter.
At the parade on May 30, Swersey said he had “never seen Belle smile that big, for that long” as she rode in a convertible with Disney’s Queen Elsa of Arendelle while her family and friends distributed information about pediatric cancer and the nonprofit organizations Lucy’s Love Bus and St. Baldrick’s Foundation. Swersey said his family was also touched by numerous signs of support along the parade route, personal attention from Newton Mayor Setti Warren, and numerous services donated by local businesses.
While he said Belle continues to talk “nonstop” about the parade, Swersey has a wish of his own: to inform local officials of ways in which Newton and other communities can help families affected by pediatric cancer through local awareness efforts, fund-raisers, and advocating for increased research funding at the federal level.
“Our hope,” he said, “is for awareness to lead to action.”
Cindy Cantrell may be reached at email@example.com
Health Story Collaborative Blog
Harnessing the healing power of stories...
Brave New Normal: Keeping Conversations Vital in Healthcare
by Val Walker
Brave New Normal is a series of Q&A's with professionals devoted to preserving the role of conversation in healthcare. Dialogue, building camaraderie and trust between patients, caregivers and providers is not only vital to better communication, but allows for care planning that reflects the patient's wishes and concerns.
I'm excited to interview innovative and outspoken experts who can weigh in on how to have effective conversations in the hurried new normal of our digital age. I'll be profiling authors, researchers, clinicians, and educators to inspire our confidence as communicators—person-to-person.
To launch Brave New Normal this month, my first Q&A is with Jennifer Sax, Director of Communications at Good Shepherd Community Care in Newton, MA. Working for hospices since volunteering as a teen, she is a leading advocate in the Boston area for having end-of-life conversations. Jennifer coordinates educational programs for the Good Shepherd Institute, collaborating with a vast, dynamic network of trainers for end-of-life planning.
Jennifer Sax, Director of Communications, Good Shepherd Community Care
1. What sparked your interest in having conversations about our end-of-life care?
When I was 14, I began volunteering for a hospice in Maine where my mother worked as a nurse—and she still is a hospice nurse. Even as a teen, and throughout my life-- both personally and professionally,I have witnessed how having conversations about one's end-of-life wishes has impact on the way we live our lives.These conversations are not just about dying. They are about how we want to live until we die. They are about taking responsibility, expressing our values and advocating for our care.
2. What are the most important reasons for having conversations with our loved ones and providers about the end of our lives?
Studies consistently report that one of the single most important factors in whether patients and family members report a positive end-of-life experience is whether or not they have had a conversation with their family and loved ones about their wishes. We find that when people have had these conversations, caregivers and loved ones suffer less complicated grief – and have less guilt, confusion and stress.
As providers, by initiating "the conversation" we have the opportunity to significantly and effectively change the kind of care people receive. I'm a firm advocate for having these conversations from an early age. Life can be unpredictable and it's never too late, until it is. The earlier and more frequently we can be having these conversations the more comfortable we will become and the less likely we are to end up making decisions in crisis.
3. As a communications professional, how do you currently advocate for having end-of-life conversations?
As part of my role in directing the programming of Good Shepherd Institute, I frequently have the opportunity to raise awareness and promote community dialogue around end-of-life issues and planning. I believe that we are in the midst of a pseudo "social revolution" towards increasing people's comfort with end-of-life issues ---advance care planning is an integral piece.
There are lots of wonderful organizations out there doing this work. I recently participated in a new media campaign for The Conversation Project and we have had the pleasure of hosting its founder, Ellen Goodman, at one of our Institute Dinners. Good Shepherd is also a partner of Honoring Choices Massachusetts and we participate annually in National Healthcare Decisions Day (April 16th) by sponsoring community programming and education. This year we are hosting "Who's Your Proxy" as a fun and interactive way to take some of the "edge" and stigma away from these topics.
4. Because you're so active in teaching the importance of end-of-life conversations, how do you envision the healing role of conversation in general for health care?
With the influx of the electronic medical record and changing health care regulations, I believe we have been at risk of discouraging conversations between patients and providers. That said, there are advocates for change out there (Dr. Atul Gawande, Being Mortal) and certainly some Medicare reform that speaks to the importance of these conversations. The bottom line is that I think people need to be advocates for themselves and know that they can "open the door" to these conversations – not only with family and loved ones, but with providers as well.For so long we have been a society focused on cure. Having these conversations is about shifting our focus to what is truly important.
I couldn't agree more, Jennifer. Thanks so much for speaking with me today!
I found Jennifer's training resources for end-of-life conversations to be very helpful, and have listed below the links, for further reading:
The Conversation Project, and Founder, Ellen Goodman
National Health Care Decisions Day (April 16, 2016)
Honoring Choices Massachusetts
The Institute for Healthcare Improvement
Val Walker, MS, is the author of The Art of Comforting: What to Say and Do for People in Distress (Penguin, 2010). Formerly a rehabilitation counselor for 20 years, she speaks, teaches and writes on how to offer comfort in times of loss, illness, and major life transitions. Keep up with Val at www.comfortinginaction.com
An old ranch hand saddles up, one last time
By Garrin Marchetti .
NORTH ANDOVER — Even as cancer ravaged his body, Robert Key simply wanted to get back on a horse one last time.
Key, known to family and friends as "Rebel," was a military veteran who had been diagnosed with lung cancer and given just months to live by doctors.
In his youth, Key worked on a ranch and rode horses constantly, but he had not done so in many years. When he received his devastating diagnosis last year, he had one final dream: to get back in the saddle and ride one more horse, one last time.
Key, 70, died March 2, but not before he was granted his last wish just days earlier, thanks to several organizations, including Windrush Farm, located at 479 Lacy St.
A nonprofit organization which has operated since 1964, Windrush Farm has provided equine activities for disabled children and adults. According to its website, more than 2,000 guests enjoy the educational and therapeutic activities offered by Windrush each year.
In the fall of 2015, when Key expressed his desire to ride again, his nurses at Good Shepherd Community Care in Newton, Massachusetts, a hospice and palliative care center, reached out to the Dream Foundation for help.
A national nonprofit that has granted the wishes of terminally ill adults and their families since 1994, the Dream Foundation contacted Windrush last November. In addition to its disabled guests, Windrush has provided the same educational and therapeutic activities for veterans.
"The Dream Foundation knew of our work with veterans and thought we might be able to help," Windrush Executive Director Mandy Hogan said this week. "Once we heard Rebel's story, we immediately wanted to get him on a horse."
Windrush initially hoped to have Key come for a visit in December 2015, but Key was unable to come to North Andover due to poor health and lack of support, according to Hogan.
But two months later, on Feb. 27, 2016, Key arrived at Windrush with his "dream team" behind him: his social worker, Donna Delone; his nurse and a volunteer with Good Shepherd who was also a military veteran.
According to Hogan, she and her staff assisted Key's team in helping Key, who was confined to a wheelchair and breathing with an oxygen tank, out of the van they had driven in and onto the mounting ramp inside Windrush's indoor horse corral.
Key's companion in the corral was "Squash," a short, sturdy horse of the Haflinger breed. According to Hogan, Squash stood "rock solid" as Key's support team lifted him from his wheelchair and onto the horse's back.
Key's weakened condition made it difficult for him to go on a lengthy ride with Squash, but he was able to sit in the saddle for roughly 10 minutes before he had to go back into the wheelchair, Hogan said.
While Key may not have been able to ride Squash himself, he got much joy from watching Frankie ride instead, according to Hogan. He asked Hogan if Frankie could take his place, and before long, Key was shouting instructions to Frankie as he rode along the corral with help from Windrush staff.
"He was such a generous soul for all he's been through," Hogan said. "He sat (in his wheelchair) on the mounting ramp and told Frankie how to get on the horse, how he should ride him. He rode vicariously through Frankie."
Although they had heard Key's stories about his work with horses over the years, his "dream team" could not believe the enthusiasm the veteran showed at Windrush.
"When they were here, his team was constantly saying, 'We haven't seen him this awake or alive in weeks,'" Hogan said. "It was such a joy for them to see him, in one of his last days, so happy."
Just four days after his "last ride," Key died. Hogan said members of the team found comfort in the fact they were able grant the dream of another veteran.
"My dream would have been for him to be able to have gotten on the horse, and we could have taken him for a real ride," Hogan said. "But we let him call the shots, and that worked out perfectly. It was kind of empowering for him, in such a condition, to watch somebody get such a joy out of riding and impart some of his knowledge as well."
Newton 'power couple' donates solar panels
This event was significant not only because it gave Good Shepherd Community Care, a nonprofit organization in Newton, access to clean solar energy, but also because the system was donated by 22-year-old Carrie Sunde, whose mother, Carol, died under the care of Good Shepherd Community Hospice last year.
Carrie Sunde and her fiancé, Tom
On Friday, Jan. 16, Good Shepherd Community Care went “solar” with a ribbon-cutting ceremony and luncheon for its new 28kW solar system that was recently installed at its Newton office location.
This event was significant not only because it gave Good Shepherd Community Care, a nonprofit organization in Newton, access to clean solar energy, but also because the system was donated by 22-year-old Carrie Sunde, whose mother, Carol, died under the care of Good Shepherd Community Hospice last year.
Carrie was inspired to find a way to give back to Good Shepherd following a visit to the organization’s new office where she was given a tour of “Berta’s Garden,” a memorial donated by the family of another patient cared for by Good Shepherd.
Carrie and her fiancé, Tom, came up with the idea of donating a solar system to Good Shepherd. Tom is the CEO and founder of Invaleon Technologies, an integrator and installer of photovoltaic solar technology.
Carrie’s hope is that Good Shepherd can use the money saved on its electric costs towards the care of patients and families who are in need of hospice and palliative care services in the future
Newton hospice reaches out to Russian families
By Deirdre Fernandes | Globe Staff August 26, 2012
Photo by Michele McDonald for the Boston Globe
(Photo Left: Waltham resident Rita Shtulman says a Russian hospice service was a great help to her late mother.)
Ida Shtulman laughs from behind the wacky, oversized glasses.
Her white hair is in a neat bob. Always fashionable, she wears a new red blouse and black sweater for the occasion, although the clothes swallow her now-small frame. There is a clown nearby, a cake ablaze with candles, and sparkling juice.
In these photos of her 90th birthday party in March, Ida is smiling as she is hugged by family members.
She died less than four months later.
For her daughter, Rita Shtulman of Waltham, the photos are a reminder that her mother’s last days were spent not only battling pneumonia and other illnesses, but were also filled with moments of joy, in large part because of a novel hospice program.
Newton-based Hospice of the Good Shepherd has been working with Royal Braintree Nursing & Rehabilitation Center, where Ida lived, for the past year to meet the needs of Russian-speaking elderly patients.
Shtulman, who emigrated with her parents and her son from the Ukraine more than 20 years ago, said she was initially reluctant to accept hospice care for her mother, thinking that “with hospice, death is going to sit there.” But after talking with her mother’s doctor and caregivers, and researching end-of-life care, Shtulman said, she realized that hospice would provide her mother with additional help.
“Because of them she was alive for 11 months,” Shtulman said of the team of hospice and nursing home workers. “She was happy in her own way. And I was happy.”
When Hospice of the Good Shepherd began Krug Zaboty, its comprehensive Russian program (which translates to “circle of caring”), a year and half ago, agency officials knew they faced a challenge.
How do you convince Russian families — many of whom are brought up to fight for their last breath, avoid handshakes at funerals, and are likely to opt for aggressive life-saving measures — that another operation is unnecessary and unhelpful, and that reducing a dying family member’s pain is more important?
But the need was there for the region’s growing Russian-speaking elderly population, who in many cases had immigrated with their children decades ago or moved to the United States to be closer to their families, said Artur Micolisin, nursing care coordinator for the Hospice of the Good Shepherd. He emigrated from Moldova in 2000 and speaks Russian.
“In Western culture, terminal patients accept the outcome,” said Micolisin, and they may spend their last remaining months grieving or settling matters with family members.
“The vast majority of Russians,” on the other hand, “were in panicking mode, trying to jump from one medical solution to another medical solution, when there wasn’t one,” Micolisin said.
Since modern hospice services were introduced in the United States in the mid-1970s, the movement has expanded and become more specialized. According to a study by the National Hospice and Palliative Care Organization, nearly 1.6 million patients received hospice care in 2010, up from 1.3 million in 2006.
Hospice agencies are developing programs aimed at specific communities. Many have end-of-life care for veterans and Holocaust survivors. Organizations are reaching out to Latinos and African-Americans, who overall use hospice less frequently. In the Washington, D.C., area, there is a hospice program for Korean families, said Jon Radulovic, a spokesman for the National Hospice and Palliative Care Organization.
With increased competition and more regulatory requirements and demand for resources, hospice agencies are trying to meet as many needs in their communities as possible.
“Hospices are having to be smarter, more efficient, and still provide interdisciplinary care,” Radulovic said. His organization instructs hospice programs “to make sure you’re not putting resources to what you don’t need, and not missing out on communities that need service.”
Newton’s Hospice of the Good Shepherd had a Russian nurse for several years, but the nonprofit realized that it wasn’t enough, said Timothy Boon, the organization’s president.
Good Shepherd has developed a Russian-speaking team, with a nurse, social worker, home health aides, and an art therapist.
The workers help explain medical terms to patients and their families in Russian, manage pain with medications, and even go out to get ethnic food.
About 100 patients have used the hospice’s Russian program since it began, Boon said, and about 10 percent of the agency’s current patients are Russian.
Some of the patients are in their homes, but many others are residents of nursing homes, such as the Royal Braintree Nursing & Rehabilitation Center, which has a Russian-speaking unit.
Cambridge resident Olga Dadasheva said that having caregivers and hospice workers who spoke Russian was a comfort to her mother, and helped her understand what was happening medically. Dadasheva’s mother had been a resident of the Braintree nursing home for a few months before her death in January at age 87.
For her mother, “the English-speaking environment was frightening, especially in the hospitals,” she said.
Dadasheva moved her mother, who suffered from dementia, to the nursing home and asked for hospice services after she suffered a fall and stopped eating. Her mother had grown up in Siberia and had always been strong, Dadasheva said, but in the last few weeks couldn’t get out of bed. Dadasheva said she was pleased with the extra help and support they received from hospice.
“I feel like we did everything we could,” Dadasheva said.
While Hospice of the Good Shepherd is expanding its outreach to the local Russian community, the organization is also trying to build ties internationally. Micolisin returned to his hometown of Chisinau, Moldova, this summer to learn about the country’s hospice program, which started soon after he moved away more than a decade ago.
Hospice of the Good Shepherd is raising money to help Hospice Angelus, the Moldovan organization, purchase equipment for its patients, and hopes eventually to conduct exchanges and training.
Micolisin said he was impressed by the extent to which hospice is growing in the former Soviet state. And he realized that the local Russian-speaking program and Hospice Angelus are facing similar challenges, such as how to draw more volunteers, which is a cornerstone of the hospice movement.
The visit signaled that if the views of end-of-life care are changing for communities that were once part of the Soviet Union, they may change for Russian-speakers in the United States.
“I was amazed at how many things changed,” Micolisin said.
Newton hospice offers class on caring for Vietnam veterans at the end of life
West Roxbury — While many still remember the Vietnam era like it was yesterday, 50 years have passed since the United States first got involved in the conflict. Vietnam veterans are now age 57 and older, and many of them are dealing with end-of-life issues that are at least in part a result of their service.
Health issues including infectious diseases, complications from exposure to Agent Orange, and post-traumatic stress disorder (PTSD) are common afflictions of those who served.
Last Thursday, Newton's Hospice of the Good Shepherd hosted a workshop at the VA Boston Healthcare System in West Roxbury called “Bringing Peace: The Unique Needs of Vietnam Veterans at the End of Life.”
The hospice holds several educational sessions a year for healthcare professionals, social workers, mental health professionals and other caregivers, but this is the first one to focus specifically on the needs of Vietnam veterans. It was held in conjunction with the National Hospice and Palliative Care Organization’s (NHPCO) "We Honor Veterans" campaign being organized with the Department of Veterans Affairs.
"We're supporting this program and we want to be on the forefront of educating the community about veterans’ issues," said Jennifer Sax, director of outreach at Hospice of the Good Shepherd. "We publicized it to professionals but also to families because the implications of these issues are so broad."
About 50 people attended the training, and listened to social worker Peggy Brown, MSW, LICSW, and nurse Sharon Morrison, RN, MAT, provide insight into the unique needs of these veterans. Vietnam veterans were often younger than veterans of other wars when they entered the armed forces, may have been drafted rather than entering voluntarily, participated in guerilla rather than traditional warfare and often came home alone to a hostile public. All of these factors may impact how a hospice or palliative care professional must assist a Vietnam veteran at the end of life, and can differ greatly from the care provided to a World War II veteran, for example.
"In Vietnam, there were no front lines and no identifiable uniforms," said Morrison. "It often appeared as if the whole country was trying to kill you. ... As a way of survival, emotions are put aside. It's a necessary component to be able to function in war."
This way of dealing with complex emotions can make it difficult for a caregiver to help a patient at the end of life, especially because they can't possibly understand what that kind of combat was like.
"Many veterans learned in Vietnam to face problems alone both in Vietnam and at home. ... Bearing witness without judgment is one of the most powerful skills we can bring to our work," said Brown. "The simple phrase, 'Thank you for your service' can be incredibly powerful."
According to Thursday's presentation, the number of living Vietnam veterans is unknown, but has been reported to be between 800,000 and 2 million. In Southeast Asia, 3.4 million served with 58,220 deaths and 153,303 wounded.
In addition to environmental hazards like pesticides and herbicides, tropical diseases like malaria and exposure to Hepatitis C, upon return Vietnam veterans faced additional risks including depression, anxiety disorders, substance abuse and homelessness. These are all issues caregivers and healthcare professionals must keep in mind while caring for veterans.
"We can reduce stimuli as much as possible and monitor any potential triggers in the environment ... often the brain can't distinguish between a real and imagined threat," said Morrison. "Vietnam veterans were trained early to be prepared for any situation and that can be challenged by anxiety."
At the end of life, hospice and palliative care professionals are often responsible for helping a veteran look back, organize their experiences and contemplate their accomplishments and failures. They can help the veteran use that life review to begin healing and find peace.
"One of the most important things we can offer is to help (a veteran) make peace with the life that was lived," said Brown. "It's an important tool as people reconcile themselves and their place in the world."
According to Kathy Dunn, LICSW, palliative care coordinator at the VA Boston Health Care System in West Roxbury, the VA often works with local hospice organizations reach out to veterans and their families.
"The more we can do in collaboration and not reinvent the wheel, the more effective we are for all," she said. "We appreciate the diversity of all bereavement services and agencies we have in Massachusetts."
On July 7th 2012, Circle of Caring at Hospice of the Good Shepherd’s Russian Program Director, Artur Micolisin will travel to his home town of Chisinau, Moldova to visit country’s first Hospice -Angelus Hospice. Circle of Caring at Hospice of the Good Shepherd was the first hospice in Massachusetts.
A relatively new philosophy of care in Moldova, Angelus Hospice was launched in 2002. Since then, it has provided care to more than 1000 patients with life-limiting illnesses and their families and loved ones. During his visit, Mr. Micolisin will meet with Angelus Executive Director Dr. Valerian Isac and the hospice’s other four physicians, four nurse practitioners and social worker to discuss opportunities for collaboration as prospective ‘sister-hospices’ to one another and to share common philosophies and exchange clinical and logistical information.
Among this traditions of firsts, Circle of Caring at Hospice of the Good Shepherd’s was also the first hospice in Massachusetts – and to its knowledge in the country – to launch an entirely Russian Hospice Program, Krug Zaboty, which it started a little more than 18 months ago. “Hospice is not a philosophy of care that is inherently present in the Russian-speaking community – in Moldova – or here in the United States,” explains Mr. Micolisin. “I am extremely excited to be meeting with staff from Angelus Hospice and to learn about how our two hospices can improve the care that we offer Russian and Romanian-speaking patients and families.”
Circle of Caring at Hospice of the Good Shepherd and Angelus Hospice are both not-for-profit, non-sectarian, home care hospice agencies. For more information about the programs and services offered by each hospice visit their prospective websites at www.hospicegoodshepherd.org and http://www.hospiceangelus.md/en/main.html
She helps others at the end
By Karen Weintraub | Globe Correspondent December 5, 2011
Barrios, a certified nursing assistant at the Hospice of the Good Shepherd in Newton, was recently awarded the 2011 Schwartz Center Compassionate Caregiver Award from the Schwartz Center for Compassionate Healthcare, a Boston-based organization that promotes empathy among care givers and better end-of-life care.
Q. You are the first certified nursing assistant to ever win this award. What do you think you do differently from other certified nursing assistants?
A. I think I just do my job. I do it from the bottom of my heart. I love my work.
Q. You seem to have a real connection with your patients.
A. I feel the connection with them as soon as I go into their house. I talk to them very soft. I feel the connection inside me. It’s something I have in me that I cannot explain.
Q. You said you don’t like to call them your patients. Why not?
A. I try to find the word to call them, because I don’t like to call them clients, or patients. Maybe: part of my family, something close to me. They come into my heart.
Q. When you first arrived in the United States from Guatemala as a teenager, you worked in a factory for 10 years. But you say that was not as emotionally fulfilling as your current work.
A. Really not. I tried to work every area that I could and I was feeling like I was wasting my time.
Q. Have you always had this gift for helping older people?
A. Since I was a kid in my country, I used to like to help everybody who needed my help.
Q. Are there any patients with whom you’ve developed a special relationship?
A. I’ve had more than one special relationship. Everybody is very close to my heart. Some patients are more clear in their mind, they don’t have dementia or something. They really know what’s going on with them. We have more conversation and more time talking together.
Q. Are patients with Alzheimer’s or dementia harder to connect with?
A. With the people [who] have dementia or sickness in their mind, I try to sing to them and talk very softly. I know they understand, but you have to find a way to talk to them. One person, she just passed away. I was singing to her every morning. She’d wake up and look at me and smile. That was something that [made me] feel good inside.
Q. As a hospice worker, you must know many patients who pass away. When you form such close connections with them, isn’t that particularly hard for you?
A. When they’re gone, I cry. My heart is not strong [enough] not to cry. I feel the stress, but then thinking about it, that I’m sooner or later going to be with them again [in heaven], and they’re in peace, and they’re not suffering - that makes me feel better.
Q. You said you are thinking about training to become a nurse now?
A. I want to be prepared better to help people.
Q. Many nursing assistants are probably not as positive about the work as you are. How do you stay so upbeat?
A. Probably they’re in the wrong place - it’s the wrong job for them. When I used to work in the company, sometimes I don’t want to go to work. But working with hospice is something that I love to do. And if I have to wake up at 4 o’clock in the morning, 3 o’clock in the morning, I don’t mind, I just do it.
Newton person of the week: Chelsea Funk
Chelsea Funk is a social worker at the Circle of Caring Hospice of the Good Shepherd in Newton.
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A Good Age: Most elders fear being kept alive too long – not ‘death panels’
Recently HGS nurse, Suzan Zorb, was quoted in the Patriot Leger.
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Wellesley couple helps raise funds, friends and awareness for annual Hospice walk
By Staff reports | GateHouse News Service
Wellesley — Twenty-eight years ago, Circle of Caring at Hospice of the Good Shepherd cared for Wellesley resident John Sullivan’s wife. After being diagnosed with terminal cancer, a physician from Newton-Wellesley Hospital referred John and his family to Hospice. “At the time, I had no idea this type of service was available,” explains John. “The Hospice did an incredible job and the experience was life-changing.”
Years later, John met his current wife, Tobey. “John always spoke so highly of the Hospice,” states Tobey. “So in 2005, after retiring, I saw an ad for volunteers in the Townsman and thought, I’ll give this a try.” Tobey began volunteering in the summer of 2008. When Circle of Caring at Hospice of the Good Shepherd held its 30th Anniversary “Big Feat” Walk in September, Tobey and John willingly volunteered at one of the six checkpoints along the route.
This year, Tobey and John are acting as Sponsorship Chairs of the “Big Feat” Walk Committee. They have sent more than 100 letters to local businesses and made many follow-up phone calls. “You get the most immediate response form people who have used hospice themselves. We are learning that people have different levels of awareness about hospice,” explains John.
When asked why she thinks the “Big Feat” Walk is important, Tobey was quick to answer. “I think as an agency, we have to present something to community members that they can participate in. And it helps to raise awareness. People really don’t know what hospice is.”
Proceeds from the annual “Big Feat” Walk help bridge the gap between insurance reimbursement and the cost of the skilled, compassionate care provided by the Hospice. Circle of Caring at Hospice of the Good Shepherd’s team has provided quality end-of-life care to thousands of people and their families since the agency’s inception in 1978. The Hospice relies on the “Big Feat” Walk every year as one of its biggest fundraisers and “friendraisers.” This year’s “Big Feat” Walk will take place Sunday, Oct. 4, at 1 p.m.
Hospice of the Good Shepard: An extraordinary agency
When a person is ill and faced with a difficult chronic disease or any serious illness, there is a positive and prudent solution regarding their care. The Hospice of the Good Shepard, a circle of caring, is an extremely compassionate, remarkable, angelic agency. The nurses, the social workers, the chaplain, the home health aides, are all highly professional, knowledgeable and experienced with a deep sense of dedication and commitment. There is a special feeling of safety and security when one is in the hands of these amazing and outstanding people. I feel very fortunate and blessed despite my difficult illness to be a patient of the Hospice of the Good Shepard, Circle of Caring located 2042 Beacon St., Newton, MA.
90-year-old sculptor's art aired anew
Siblings honor mom at hospice
By Irene Sege | Globe Staff
Jane Meryll held up a sculpture of a fish done by her mother, Evelyn Raphel, 90, at her mother's assisted living facility. Meryll and brother Stephen Kaplan, left, coordinated the program. (Globe Staff Photo / Pat Greenhouse)
Several of the 60 people who filled the common room at Chestnut Park, an assisted living residence in Brighton's Cleveland Circle, parked their walkers beside them, and another half-dozen left them folded in the corridor outside. The 90-year-old guest of honor - dressed impeccably in a white blouse, black and white beads, black vest, and black slacks - sat in her wheelchair.
For an hour yesterday, the years melted away as Evelyn Raphel's two children hosted an exhibit of 14 sculptures she created over almost a quarter of a century in Florida after she retired from the clothing business. In an event as much about family as about art, her daughter and son introduced her work: the face carved in a block of onyx, the pink alabaster swan, the elegant woman shaped from black stone that reminds Raphel's daughter of the Italian artist Amedeo Modigliani.
Playing piano and guitar, they led their mother's neighbors in some of her favorite songs, including "You Are My Sunshine," "Mack the Knife," and "If I Had a Hammer," which Raphel's son remembered leading for his Jewish youth group back in the 1960s.
"I'm just overwhelmed," Raphel said when it was over. Life returns to normal today, with Raphel expected at Chestnut Park's weekly current events discussion group.
The twice-widowed Raphel had hesitated when the chaplain of the Hospice of the Good Shepherd, which provides her services, suggested the exhibition. "Now I'm beginning to feel good about it and think it's so wonderful that I'm beginning to feel proud of myself," Raphel said in an interview.
Raphel moved to Chestnut Park in 2004 after the death of her second husband, and enrolled in the hospice program last summer to minimize hospitalizations. "She wants to die in her home," her daughter, Jane Meryll of Mamaroneck, N.Y., said in an interview. Raphel suffers from arthritis and the overall decline of old age; the medication she takes to manage pain has weakened her voice.
Yesterday's exhibit capped - and encapsulated - a lifelong interest in the arts that began when Raphel, who grew up in Roxbury, accompanied her mother to the Museum of Fine Arts. Raphel took art classes there and as an adult studied painting at night. She loved decorating the windows at Ernstein's, the Uphams Corner clothing store she inherited from her parents, and at the Dainty Dress Shoppe she and her first husband bought in Mattapan Square.
Shortly before she retired, Raphel tried working with wood and chicken wire in adult education courses at Brookline High School. When she and her second husband moved to Florida in 1975, Raphel took up sculpting with a passion. "I always felt that I was able to copy what I saw," Raphel said. "The minute I started working with stone or clay, I felt altogether different. I was working from the inside out."
Raphel set up a studio and taught sculpture. She sold pieces to her neighbors in Boynton Beach, Fla., one of whom now lives in Chestnut Park and who stood up yesterday to say that she owned a beautiful piece of a couple embracing in ecstasy. "I did a lot of that kind of thing," Raphel said, eliciting laughter from the group. "They sold very well."
Many years have passed since Raphel used to sneak cigarettes outside Girls Latin School. Many years have passed, too, since Raphel and her teenage daughter clashed in their Newton home. That daughter is 65 now. Meryll sees in her elderly mother's gnarled hands the once nimble fingers of the expert seamstress who 58 years ago showed her a piece of blue velvet one morning and asked what kind of dress she wanted. "In the afternoon I had a dress," Meryll said.
If yesterday was cause for celebrating a long life, then it also provided an occasion for healing. Meryll and her brother, Stephen Kaplan of Needham, were estranged from each other for a decade for reasons neither explicates. "There was a painful decision many many years ago to excommunicate ourselves," said Kaplan, 61. "It wasn't the right thing to do."
The two siblings have been rebuilding their connection for the past half-dozen years. Yesterday marked the first time they've played music together. "This is a momentous moment for the two of us," Meryll said. "It's almost like a God moment."
Raphel's children attribute their musical abilities to their late father, who played piano and participated in shows at Temple Shalom in Newton. Meryll is a professional singer and pianist who teaches music and coaches people through performance anxiety. Kaplan, an attorney, played in a rock band with friends in the 1970s.
Raphel heard in her children's performance the promise that their relationship will outlive her. Asked what she'll remember most about the event, she said, "That it brought my children together."
© Copyright 2009 Globe Newspaper Company.
A Good Age: Hospice can help with the long goodbyeBy Sue Scheible
The Patriot Ledger
QUINCY- Three weeks after my father died, I received a letter from the hospice that provided his end-of-life care. Over four days, hospice had guided us both through our goodbyes and made sure he was comfortable and not in pain. He died March 9 at age 96.
When I selected Hospice of Rochester Lifetime Care in Rochester, N.Y., the social worker told me hospice is there for families after someone dies. Most people don’t take advantage of this for several months.
The letter gave me the name of a hospice in Greater Boston and explained the grief process that lay ahead, calling it possibly “the hardest work you’ll ever do.”
Many people have been advising me about the grief. “It will be hard.” “Focus on all the good memories.” “He is at peace.” “No regrets.” “He lived a good, long life.”
To be truthful, I do have regrets – second guessing – about some of my decisions, but that will ease. I don’t spend a lot of time with the good memories quite yet, but I will. Age 96 is long, but I wanted more.
Time heals. Here are some lessons learned along the way:
Look for good advice where you can find it. At my health club, I know a hospice nurse, a geriatric case manager and other women who’ve been long-distance caregivers.
Susan Zorb, the nurse with Hospice of the Good Shepherd in Newton, brought me a booklet explaining what happens physically and emotionally as the body prepares to die – how the systems begin to shut down, even several months before. Her advice: Don’t force him to eat. Appetite loss is natural.
Kate Ryan, a nurse with Cranberry Hospice in Plymouth, sent another helpful booklet and reinforced my sense I should stop pushing my dad to do more than he felt comfortable.
Because of both, I made good decisions more easily.
The geriatric case manager reassured me last July that the plan I had worked out with an assisted-living residence affiliated with a skilled nursing home was a good one.
Emotional support comes in unexpected places. Customer service reps at phone companies, utilities and the post office were so empathetic when I had to keep changing accounts and addresses. Those little moments of sharing during hectic days were uplifting.
A doctor friend told me: “No matter how much you were prepared for it, you’re not. So up and down you’ll go, and weird it will be, but that’s all part of the process, I guess. And when that’s all done, he’ll be more stably in your heart forever. ”
I don’t really know if my dad believed in an afterlife. Near the end, I told him wherever he was going, I would be with him eventually.
“That’s the mystery,” another friend advised. “No one knows. But I believe the afterlife is all the memories we leave behind, the things we gave to others during our life.”
FOR IMMEDIATE RELEASE:
Local Hospice Opens One of a Kind Library
On April 8th, 2008, Circle of Caring at Hospice of the Good Shepherd officially opened its Resource Library and Remembrance Room. These two unique spaces are now available to community members looking for guidance as they face life’s transitions. The Hospice welcomed over 50 people to the Grand Opening, including Newton Mayor David Cohen, a supporter of the Hospice for 30 years, who led the ribbon cutting ceremony with several representatives from the Newton-Needham Chamber of Commerce.
The evening was emotional for many in attendance, including Tim Braceland, Chair of the Chamber of Commerce who spoke openly to the group about his personal experiences with hospice and the special care his family received. The Hospice was proud to welcome internationally renowned scholar, Sandra Bertman, Distinguished Professor of Thanatology and Arts at the National Center for Death Education Mount Ida College, who moved the audience with her reading from a children’s book about memory, loss and hope. To conclude the evening, Rabbi Carol Glass, Hospice of the Good Shepherd’s Spiritual Care Coordinator, led the audience in a ritual to dedicate the Remembrance Room.
The Resource Library is the home to a full collection of books, music and movies for children, adults and community professionals to enjoy at the Library or at home. The first of its kind in the area, the Library is a space for people to find solace and comfort through the words and voices of others and gain access to important resources about death, dying and bereavement.
To Rabbi Carol Glass, the Remembrance Room is a space “dedicated to that which deepens our experience and makes life meaningful, real, rich and beyond ordinary.” It is a peaceful space containing plants, a tranquility fountain, art and panels listing the names of each individual who has died while being served by the Hospice of the Good Shepherd since its inception 30 years ago.
These new rooms, made possible by a generous donation from the Middlesex Savings Charitable Foundation of Natick, are part of the Circle of Caring at Hospice of the Good Shepherd’s Center for Life Transitions which offers a variety of educational and supportive services to the community. Circle of Caring at Hospice of the Good Shepherd is a non-profit, non-sectarian, community-based homecare agency that has been providing quality end-of-life care to people living with terminal illnesses and their lived ones since its inception in 1978. As the first hospice in Massachusetts, the Hospice of the Good Shepherd is currently honoring its 30 year tradition of caring for the community.
(Left) Sandra Bertman, Distinguished Professor of Thanatology and Arts, at the National Center for Death Education, Mount Ida College checks a book out of Circle of Caring at Hospice of the Good Shepherd’s Resource Library.
(Left) Ribbon cutting marking the opening of Circle of Caring at Hospice of the Good Shepherd’s Resource Library and Remembrance Room. Newton’s Mayor, David Cohen pictured with representatives from the Newton-Needham Chamber of Commerce and members of the Hospice Board of Directors.
Learning Side by Side: Hospice Hosts Multi-Faith Panel
It was an evening of learning as representatives from the Jewish, Muslim, Protestant and Catholic faiths participated in a multi-faith panel sponsored by Circle of Caring at Hospice of the Good Shepherd and the Newton Free Library. “Spiritual Needs at the End of Life, took place Wednesday night as part of the “Public Messages, Personal Experiences” educational series, funded through a grant generously provided by Sun Life Financial.
The initial presentation included panelists Rabbi Karen Landy, Chaplain Mary Lahaj, the Reverend Dr. Fran Bogle and Chaplain Kathleen Gallivan, who addressed spiritual and religious end-of-life issues for clients and families within their respective communities. Following, a moderated discussion by Rabbi Carol Glass, the Hospice’s Spiritual Care Coordinator, helped provide guidance on how to recognize and respond to varying needs and/or behaviors related to grave illness, death and burial.
In her closing remarks, Rabbi Glass explained, “We are not Catholics who die and Muslims who die, Jews who die and Protestants who die---we are all human beings who navigate the journey towards death. What we have in common, as people who benefit from sensitivity and support of our spiritual selves, is bigger than all things that constitute our spiritual differences.”
The “Public Messages, Personal Experiences” series is one of the many programs available through Circle of Caring at Hospice of the Good Shepherd’s Center for Life Transitions.
“Hospice of the Good Shepherd is committed to serving people of all faiths and backgrounds. As a responsive leader in our community for more than 30 years, we are proud to be initiating conversations about this very important topic.” states Tim Boon, the Hospice’s executive director.
Circle of Caring at Hospice of the Good Shepherd, a non-profit, non-sectarian, home care agency, provides compassionate care to people with life-limiting illnesses at home and in nursing homes. For more information about programs and services offered by Circle of Caring at Hospice of the Good Shepherd, please call the Hospice office at (617) 969-6130 or visit our website.
On October 6th, Circle of Caring at Hospice of the Good Shepherd’s Executive Director, Tim Boon journeyed to Washington D.C. as a participating member of a Hospice Expert Panel, assembled by the Medicare Payment Advisory Commission (MedPAC).
MedPAC is an independent Congressional agency established by the Balanced Budget Act of 1997 to advise the U.S. Congress on issues affecting the Medicare program. In its June 2008 report to Congress entitled, “Reforming the Delivery System” MedPAC suggested that hospice utilization has changed dramatically since the inception of the hospice benefit in 1983. There were less than 100 hospice programs in the country at that time, compared with nearly 3,000 today. MedPAC and some members of Congress are now suggesting a need for changes to the payment structure of the Hospice Medicare Benefit. Any changes to the Hospice Medicare Benefit would have significant impact on Medicare beneficiaries and future recipients of hospice care. This 9 member panel, of which Boon was a participant, was gathered by MedPAC to share its professional experiences and insight in order to help guide MedPAC in its deliberations.
“Inasmuch as Hospice of the Good Shepherd was one of the initial hospices in the Medicare demonstration project which led to the Hospice Medicare benefit, I am very pleased that Hospice of the Good Shepherd was able to have a voice in these important discussions” states Boon. Boon traveled to D.C. in hopes of ensuring that the hospice Medicare benefit will continue to offer people the option of living the final stage of their lives at peace, in comfort, surrounded by loved ones.
Caring at Hospice of the Good Shepherd, a non-profit, non-sectarian, home care agency, provides compassionate care to people with life-limiting illnesses at home and in nursing homes. For more information about programs and services offered by Circle of Caring at Hospice of the Good Shepherd, please call the Hospice office at (617) 969-6130 or visit our website.
As published in the September, 2007 issue of the Newton-Needham Chamber of Commerce publication, InBusiness
The Aging Population: Tips to Make Your Business “Elder-Friendly”
by Rachel Gaddes
We are currently on the brink of the greatest demographic shift in American history. The population is aging. Rapidly. At sixteen percent of the population, people over age sixty-five in Newton and Needham already make up a greater portion of the population than they do in the nation as a whole. Currently approaching 17,000 people, this population in our community is only getting larger. It is estimated that by the year 2030, when the youngest baby-boomers officially become senior citizens, one out of five Americans will be sixty-five years or older. A majority of older adults enjoy active, independent lifestyles and although they could benefit from the services your business has to offer, they are often overlooked as potential customers.
Senior citizens are loyal customers with significant purchasing power. There are several easy and affordable changes your business can make to better serve this growing segment of the population.
“Make your space itself elder-friendly,” recommends Alexandra Golden, Esq., an elder law specialist of Golden Law Center in Needham.
• Physical Accessibility - To ensure all customers are able to enter your retail or office space, have adequate handicapped parking, as well as accessible entrance ways and walking space. Make sure your aisles are wide enough, and have no tripping hazards. This will also lower your liability.
• Good Lighting - To accommodate those with poor vision, make sure your space is well-lit so your customers can read about and see your products easily.
• Minimize Background Noise - To facilitate good communication, create a quiet space. When meeting with clients, position yourself to face the customer in order to make lip-reading possible if he or she has difficulty hearing.
• Friendly Seating - Many senior citizens have a hard time getting out of comfortable seating safely because of decreased balance and strength. Make sure your waiting room, office or restaurant has seating options for people of all abilities.
• Easy-to-Read Signage - Bright, clear signs with large, easy-to-read type will enable all community members to read and recognize your sign.
• Large Print Promotional Materials - Look at the type face and font size in your promotional materials. Choose a larger type face, even if it adds an extra page to your materials. This will ensure that your message is easily read by all.
• Use the Internet - According to U. S. Census data, almost eighty percent of seniors in the highest income brackets have access to the internet!
• Promote Autonomy - Provide people with the opportunity to maintain their lifestyle without taking away independence. Consider expanding your products to meet seniors’ needs and training your staff to consider the senior population when making decisions.
• “Community In-reach” - “Bring the community (and your business) to places where elders live and congregate,” advises to Joseph Carella, Executive Director at the Scandinavian Living Center, an assisted living facility in West Newton.
THE BOTTOM LINE
Making improvements to increase the accessibility of your business will benefit all community members, not just seniors. Small changes to reach out to the elderly population will also enable you to reach children, people with disabilities and additionally, any family members or friends that accompany them during their exploration of the local businesses in our community.
Founding Board Members Help Hospice Kick-off 30th Anniversary Year
Circle of Caring at Hospice of the Good Shepherd officially launched its 30th Anniversary year as former Board Members joined current staff, Board Members and volunteers at a kick-off celebration on January 15th. For the first hospice in Massachusetts, this historic event was a testament to the 30 year tradition of caring that has made it a pioneer in the hospice field. The evening was a true success as old friendships were rekindled and stories were shared about Circle of Caring at Hospice of the Good Shepherd’s rich past and promising future.
Looking back, Linda Kilburn, the founding Executive Director of the Hospice of the Good Shepherd remembered how historically, the significance of the agency was “in the strength of the staff and volunteers who guided this organization day to day.” Thirty years later, “they are still making a difference,” she explained. Kilburn and the other founding staff played an integral role in launching the national hospice movement.
Tim Boon, current Executive Director of Circle of Caring at Hospice of the Good Shepherd described how “after 30 years, most places change. What makes HGS special is the way it hasn’t changed.” Boon explained that the Hospice holds true to its original mission as a community-based, non-profit, non-sectarian agency that has remained focused on providing high quality end-of-life care amidst the ever-changing health care environment.
For more information about this event or other programs or services offered by the Circle of Caring at Hospice of the Good Shepherd, please call the Hospice at (617)969-6130
Hospice to Host Educational Program on Lesbian, Gay, Bisexual and Transgender Elders
On February 12th, Circle of Caring at Hospice of the Good Shepherd will host an educational program on the issues facing lesbian, gay, bisexual and transgender elders. The Hospice will welcome Lisa Krinsky, LICSW, Director of the LGBT Aging Project who will present “LGBT Aging 101: What You Need to Know about Lesbian, Gay, Bisexual and Transgender Elders.” The program will be free of charge and open to the community.
Renee Goldstein Fixler, Director of Social Work at Circle of Caring at Hospice of the Good Shepherd believes that “the hospice approach is one that focuses on the whole individual. We look at people and families from a holistic perspective,” she explains, “in order to help people fulfill their last wishes and embrace what is important to them.” Circle of Caring at Hospice of the Good Shepherd is a non-profit, non-sectarian, home-care agency that has been providing end-of-life care to people with life-limiting illnesses and their families in Newton and the surrounding areas since its inception in 1978. Held during the Hospice’s 30th anniversary year, this educational event demonstrates the agency’s continued commitment to ensuring that all people receive appropriate care that is tailored to their individual needs and life circumstances.
“LGBT Aging 101: What You Need to Know about Lesbian, Gay, Bisexual and Transgender Elders” will be held from 6:00-7:30pm at the Circle of Caring at Hospice of the Good Shepherd’s office at 2042 Beacon Street in Newton. CEU’s are available for nurses and social workers for a fee of $10.
For more information about this event or other programs or services offered by the Circle of Caring at Hospice of the Good Shepherd, please contact Jennifer Sax at firstname.lastname@example.org, call the Hospice at 617.969.6130.
Hospice Holds Annual Community Memorial Service
On November 8th, Circle of Caring at Hospice of the Good Shepherd held its annual Community Memorial Service which honored the memories of the individuals the Hospice was privileged to serve. Families, neighbors, Hospice staff and volunteers attended the special event, held yearly at the Wellesley Community Center.
Circle of Caring at Hospice of the Good Shepherd has provided quality end-of-life care to over 3,400 people and their families since its inception almost 30 years ago. Each year, the Community Memorial Service provides an opportunity for those who have experienced loss to join together and gain comfort from shared experiences.
As a non-profit, non-sectarian, home care agency, Circle of Caring at Hospice of the Good Shepherd welcomed people of all faiths to its Community Memorial Service. Facilitated by the Hospice Spiritual Care Coordinator, this year’s service included live music, readings and a special candle-lighting ceremony to honor each client the Hospice cared for during the past program year. At the end of the service, visitors were invited to view the Hospice’s memorial panels which display the names of over 3,400 individuals cared for by Circle of Caring at Hospice of the Good Shepherd since 1978. These panels are permanently on display in the Hospice’s Remembrance Room.
For more information about other programs or services offered by Circle of Caring at Hospice of the Good Shepherd, please call the Hospice office at (617.969.6130.
Hospice of the Good Shepherd Hires New Executive Director
Timothy Boon, an experienced leader in healthcare, will join the team of caregivers at Circle of Caring at Hospice of the Good Shepherd this summer as its new Executive Director.
A registered nurse, Boon began his career in hospice in 1994 after founding Part of the Solution, a Bronx-based organization serving those living with hunger and homeless in New York. He “fell in love with the hospice concept and team approach,” and feels that the hospice model, which strives towards making the end of life as comfortable and natural as possible, is “a great example to healthcare.”
Coming to the Circle of Caring at Hospice of the Good Shepherd from an executive role with the Connecticut Visiting Nurse Association, Boon is looking forward to building upon the established role of the Hospice of the Good Shepherd as a leader in end-of-life care in Massachusetts. A Circle of Caring at Hospice of the Good Shepherd serves Newton and the surrounding areas and has provided quality care to more than 3,300 people with life-limiting illnesses and their families since its inception in 1978. Boon will contribute to this organization with his experience in non-profit management and nursing and he is excited to be joining a hospice with “a great team and a tremendous history.”
For more information about the services provided by Circle of Caring at Hospice of the Good Shepherd or to learn more about volunteer opportunities, call 617-969-6130