Friday
Apr272018

Grief Etiquette

“Grieving is private, but it can be public, too.  We need to stop being afraid of public mourning.  We need to be open to mourners.  We need to look each other in the eye, and say ‘I am so sorry.’”  Jess Decourcy Hinds

In a previous column we noted that grief is a natural as well as very personal process.  People who are grieving can be comforted by our presence and acknowledgement of their loss and grief.  Because we want to say something to comfort the person who is grieving, but not sure what to say or do, here are a few ideas of what some people have found to be helpful - and what might not be helpful.

Imagine this situation:  Your neighbor, Sam, recently died of a terminal illness.  His wife took care of him at home for nearly 2 years.  You run into her as she retrieves the newspaper from the mailbox.

what you might say:

I’m so sorry for your loss.  It was an honor to know Sam – or to be Sam’s neighbor/friend/co-worker.  (Speak the name of the person who died.  This conveys that you are not afraid to talk about him or to hear what the grieving person might want to say.)

I admire you for your courage and strength throughout Sam’s illness. (Acknowledge her role as the caregiver.)

Sam touched so many lives. (Say how Sam touched your life; share something you remember about him.)

Sam was such a wonderful neighbor.  We all share in your loss and sadness, and will really miss him. (It is never too late to express this; the residual pain will never completely disappear.)

I would like to bring you dinner tonight, or we will keep your sidewalk shoveled this winter, or I can help with keeping your birdfeeders filled (Offer something specific.)

what not to say:

Give me a call any time you need something. (Don’t make them have to initiate contact or a request for help.)

Just keep yourself busy. (Don’t assume what they need at any given point.)

I know how you feel. (We can’t begin to know how an individual feels, but we can listen and learn.)

You must be relieved – his care was becoming such a burden. (It is their loss, not yours.)

At least Sam isn’t suffering anymore, or Sam is in a better place. (This conveys that you’re not open to hearing any negative thoughts/feelings.)  

God only gives us what we can handle (Platitudes like this might make us feel better, but they may be insulting to the person grieving.)

If words escape you, don’t escape from the grieving person. Simply be with them in the moment.  Listen for where they are.  Show up with sensitivity and kindness. Follow your heart. 

“When encountering someone who has experienced the loss of a loved one, don’t run away, hide or ignore.  Smile, embrace, hug, show your love, it will mean more than words.”  Daphne Diego, ARCH

Sponsored by the Living with Dying – An Addison County Partnership

Friday
Apr272018

Hospice Volunteers

Who are hospice volunteers and what do they do?

Growing up in Germany I remember nuns with large starched veils in our local hospital. These ladies of the order often filled a humanitarian gap in the system and could be found sitting at bed sites listening to patients, or holding vigil and praying for the anxious and dying. 

I also remember doctors making house-calls. Besides reducing the spreading of infectious diseases, it offered the comfort of HOME to patients, who were too sick to leave the house, but did not need to be in the hospital. 

Eventually, these approaches to health-care were dubbed ‘out-dated’ and a brand new county hospital was built in our city, a modern marvel of technology and efficiency, all with a cafe and small store in the entry hall. What was missing was the quiet of being with a patient. 

 Upon my arrival in Middlebury in the mid 90’s I remember my first visit to Porter Hospital.  I was welcomed by two community members - volunteers - at the front desk, greeting me, asking my name and inquiring how they might direct me. This simple gesture, especially when feeling anxious about a pending procedure, made all the difference.

Within this caring community my two sons were born at Porter - and my husband died in Hospice at home. Beginnings and endings framing the spectrum of our lives. Both birthing and dying are intimate moments, vulnerable, and life-changing. The gift of a caring community cradling us in those times is priceless.

Hospice Volunteer work has become part of my personal bereavement journey. As a Certified Life Coach and Facilitator, I work with individuals who are looking for ways through life transitions, that honor their individual values. As a Hospice Volunteer working with patients at their end-of-life, the same holds true.

This country was founded on pioneers, coming from many different corners of the world, all following a dream of possibilities, a wish for a better life, a pursuit of happiness. In crisis, neighbors helped neighbors.  It often started with support out of necessity, but goes far beyond that when we truly care.

As Hospice Volunteers, knowing we can make a difference in somebody’s life by giving of ourselves freely, honestly, and whole-heartedly is deeply rooted in our humanity.  It speaks to and is an expression of our soul-selves. It is a gifting forward.  We don’t need to necessarily wear starched head veils to do so, the essence of our heart-felt intention is what counts. ~Dorothea Langevin, Hospice Volunteer

 

Hospice Volunteer Services (HVS) trains community members to become patient care volunteers for those facing the end of life.  Volunteers provide respite for family care givers, companionship, help with daily tasks and projects, reading, listening, emotional support, music, a protective presence, in short, whatever is helpful and needed.  Once trained, volunteers may visit patients in their homes, at care facilities such as Helen Porter and Porter Hospital, in ARCH rooms, and local retirement communities. 

Hospice volunteers represent the larger community, each time they cross a threshold, communicating to patients and families, “You are not forgotten by your community.  You are not alone.  You are important even in your last months, days and hours of life.”

Some community members are called to become hospice volunteers because a loved one received hospice services and they wish to return, in spirit and action, what was once given to them.  Others simply feel called to do this kind of service.   Each volunteer’s story and gifts are unique and valued. 

HVS welcomes inquiries about becoming a hospice volunteer.  ~Priscilla Baker, pbaker@hospicevs.org

 

“HVS volunteers provide a unique complement to the care of our patients and residents at the end of life, about half of whom are on hospice. Whether it is providing flowers, sitting vigil when family cannot be there, playing the harp, singing over or helping with the transition in and out of the hospital or ARCH rooms, HVS volunteers make a difference. After someone dies, the HVS “Journey with Grief” support group can be a wonderful aid for families.” -Rev. Matt Wollam-Berens, Chaplain at Porter Hospital and Helen Porter.

“Volunteers enhance the quality of life for our patients and families.  My favorite story is about a gentleman who had size 15 feet and who was always cold. We let the volunteers know about this, and the next thing we knew, we had received numerous pair of hand-knitted wool socks for him. It was an amazing example of how the volunteers went out of their way to make a gentleman who they would never meet more comfortable at the end of his life.”  ~Marcia Wheeler, Director of Hospice Services at ACHHH

Friday
Apr272018

The Power of Music

 “Where words fail, music speaks.”   Hans Christian Andersen

A phenomenon witnessed, and experienced, by many who are touched by the dying process is the power of music.  This month’s Living with Dying column is devoted to our shared value and commitment to bring comfort and pleasure through music to all involved - patients, family members, friends, caregivers and volunteers.

Have you ever listened to a piece of music and it lifted your spirits? Or heard a melody that brought tears because it brought back fond memories? Those are just a few ways music can aid the body in the physical, mental, emotional, and spiritual release it goes through at the end of life – or at any time! As someone who plays the harp on the Porter campus, I’ve often witnessed the power of music. I have played “The Old Rugged Cross” as a life-long Baptist took their final breath, and Scottish tunes for someone with no specific religious beliefs simply because it brought them joy and pleasure. Whether you are a child or 101 years old, whether you like country or jazz or classical, rock or hip hop or the blues, music has much to offer you.

It’s one of my great joys at Porter to arrange to have people play music or sing for you, or make you a personalized playlist of your favorite music. Particularly at the end of life, there is nothing more beautiful than someone peacefully drifting away to the tunes they loved the best, surrounded by the people they’ve loved the best.

Matthew Wollam-Berens, Porter Hospital/Helen Porter Rehabilitation and Nursing, chaplain and harpist

 

Addison Respite Care Home (ARCH) recently received a generous grant from the Middlebury Rotary Club to participate in the “Music and Memory Program,” a project developed by Dan Cohen and chronicled in the documentary “Alive Inside.”  (available at the HVS Library and at www.musicandmemory.org) Cohen demonstrated – through the use of technology – the power of music to reach those who are not able to communicate, e.g., living with dementia.  By downloading a personal “playlist” (songs and music that have special meaning to the listener) onto an iPod, and using headphones, participants were able to experience pleasure and reconnect to their environment. 

Because many people exhibit memory challenges, as well as isolation, at the end of life, ARCH realized this could be a valuable resource to increase the quality of life for those dying in an ARCH room.  Already a certified member of the Music and Memory national organization, Helen Porter enthusiastically partnered with ARCH on the purchase and implementation of additional iPods for ARCH rooms at Helen Porter and the Estuary at Porter Hospital.  HVS has joined this opportunity to share the gift of music, by piloting the program not only with patients they visit at Helen Porter, but also with patients dying at home.

Laurie Borden, ARCH Community Coordinator

 

A dozen years ago, a small group of local singers, and harp therapist, Margie Bekoff, began exploring how we might bring music to those living with terminal illness.  Within a year, Wellspring Hospice Singers began singing at patient bedsides and community care facilities, often in memory care settings.  Unlike performance singing where there is a border between performers and audience, hospice singing is about connectedness.  We sing in relationship with the patient, family members and others in the room, and with each other. 

Music has a profound effect on those who listen to and those who create it.  For those at the end of life, music can

  • ·       Invite a deep sense of relaxation & inner calm
  • ·       Reduce pain and promote sleep
  • ·       Decrease anxiety and fearfulness
  • ·       Promote a sense of community and connectedness
  • ·       Encourage reflection, meditation, spiritual contemplation
  • ·       Kindle memories and life review
  • ·       Stimulate communication
  • ·       Provide diversion and pleasure
  • ·       Express a broad range of feelings
  • ·       Convey personal and cultural identity

Wellspring singers are humbled by the privilege of entering the space of those who are at the end of their lives – whether we come to sing oldies in the spirit of shared pleasure and life-review, or sing quiet, reflective songs for someone who is actively dying.  In addition, Margie Bekoff plays a variety of harp music, with singers and on her own.

Friday
Apr272018

Story Telling

“There is no greater agony than bearing an untold story inside you.”

 Maya Angelou, I Know Why the Caged Bird Sings

There is immense significance in being able to share our stories at the end of our lives.  The Living with Dying Partnership recognizes this human need to review and relate the meaning within our lifetime – with all the joy and suffering we have experienced over the years.  We have compiled some testimonies that will demonstrate the richness of  the giving and the receiving of these memories and how learning the stories of elders, friends, patients and those who grieve, expands the capacity for their caregivers to connect to each person’s whole, fully-experienced and unique life.

Diana Barnard, MD, Assistant Professor of Family Medicine, Division of Palliative Medicine, is a story gatherer, As a palliative care provider, I offer a variety of services to patients and families living with serious illness. To be effective, I must explore who people are, how they live, and what is important to them. In essence, I need to hear their story. In our busy world, it is not always easy to create time and space for this essential element of high quality care. Allowing patients to tell their story while listening closely can help me to better understand “what makes them tick”. Often, a short story can be a wonderful metaphor for their larger Life. In listening, I often hear details that help me understand deeper emotions and to explore hopes and worries for the future. Telling and listening to life stories is an important reminder that my patients are not their illness, but human beings who want to live life to the fullest for as long as possible.”

 

Similarly, Matt Wollam-Berens, Chaplain at UVM/PMC finds stories an essential tool for tending to patients at Porter Hospital, Helen Porter and the ARCH rooms, At Porter the best way to care for someone as a person and not just a patient is to ask them about their "story." Each morning at 8am I lead the department managers in a brief ‘centering moment.’ I call to mind our common purpose in caring for all those who come to Porter in search of healing and wholeness - whether it be in body, mind, or spirit. When I have permission and it does not violate confidentiality, I sometimes pass on stories people share with me during visits. A department manager, especially in places like the lab, food services, pharmacy, housekeeping, etc. does not always have the opportunity to hear the stories of the people they serve. Sharing a story can be a great way to connect the hard work they do behind the scenes with the person who is at the receiving end of what they do!” 

 

Margaret Olson, Bereavement Facilitator at Hospice Volunteer Services, feels the depth of human emotions and resiliency when she meets with community members. Storytelling is one of the oldest methods of self-exploration, self-expression and self-discovery. Recently, members of our Writing and Storytelling Group at Hospice Volunteer Services, shared their first endeavors at speaking personal stories of grief and loss. Each had a chance to see, hear and share their words in the presence of a compassionate community. Following each story, members had a chance to reflect upon what inspired them and later several members spoke about a ‘shift’ happening and a ‘heaviness’ lifting.  The evening reminded me of the words of author Francis Weller who wrote, ‘grief is a uniquely private experience that must be shared in the presence of community’.”   

Friday
Apr272018

Introduction to EOL

The End of Life Care Partnership (EOL) has been operating here in Addison County for 8 years.  Our mission is “to create a framework for our organizations to collaborate on our common goal of providing education about dying, death and options for care”.

Each month we will bring topics to light to inspire and inform our friends and neighbors about dying and death.  We want to hear from you, what is on your mind and heart regarding this challenging issue, that each of us will need to address in our lives?  We have started with a frequently asked question:  

I recently moved to Addison County and attended the Being Mortal film and discussion last March. I came away wondering about what my options are for my end of life.  How would your organizations help me and my family?

 

Matt Wollam-Berens – 802-388-4701                                                                  www.portermedical.org

The University of Vermont Health Network’s Porter Hospital and Porter Medical Group (specialty and private practices) can help support you and your family in a number of ways. In most cases your journey begins with your primary care physician (PCP). They can assist you in filling out your “Advance Directives,” a document that captures your medical needs and goals. As someone who is aware of your past medical history and current prognosis, your PCP is uniquely qualified to help you decide what sort of medical interventions you wish (or do not wish) to receive. Also, they are familiar with all the resources listed below and can assist you in choosing which ones best meet your individual needs and goals. Whether it is at our hospital or in your home, Porter is here to serve you.

 

Dr. Diana Barnard, Division of Palliative Medicine, University of Vermont Medical Center                        

As a Palliative Care Physician specializing in serious or life limiting illness I provide patient and family centered care that optimizes your quality of life by anticipating, preventing, and treating suffering.  I help assure you understand your condition, consider treatment options, complete Advance Care Planning, and develop a care plan which honors your specific values. I help you identify and explore the hopes and worries that you, your loved ones and your care givers may have. I work with an interdisciplinary team and coordinate with other providers caring for you. I can offer expertise in treating a variety of symptoms, including pain, shortness of breath, and emotional stress.

 

Maureen Conrad – 802-388-7259                                                                          www.achhh.org

Addison County Home Health & Hospice (ACHHH) can assist you and your family by providing palliative and hospice care in your own home. We will design a care plan to meet your unique needs, with the goal of assisting you in living comfortably and safely in your home for as long as possible. Our care is provided by a team of skilled clinicians who have expertise in end of life care and who coordinate with your primary care physician. Also, consultation with a palliative care MD or a specialist in your specific disease process may happen.  We provide expert management of pain and other symptoms, guidance with difficult and complex treatment choices and emotional and spiritual support for your entire family.

 

Priscilla Baker and Laurie Borden – 802-388-4111                                            www.hospicevs.org  

Hospice Volunteer Services (HVS) trains community members to serve as volunteers to help those who are on hospice or in their last days, weeks or months of life.  Volunteers might provide a protective presence and respite for family caregivers; companionship and visiting; help with light housekeeping, meal preparation, errands or a project; a calm presence during the dying process (vigil sitting); and musical comfort (from Wellspring singers or volunteers who play instruments).  We visit families in their homes, facilities, ARCH rooms – wherever they call “home”. After death, we provide bereavement support to family members grieving the loss of loved ones.  We also house a public lending library and resource materials related to dying, death and bereavement.

 

Connie Leach – 802-388-4001                                                                                www.hphrc.org

Helen Porter Rehabilitation & Nursing (HPRN), located on Porter Medical Center’s campus, includes individualized end-of-life care in the services it provides this region.  In concert with ARCH, physicians, and area palliative care/hospice teams, we offer three peaceful bedroom suites and a beautiful garden courtyard for residential hospice care.  Our compassionate nurses and Chaplain maintain support and comfort, creating a secure and loving environment.  We welcome family and close friends, and offer round the clock access, resources and special comforts during this important journey.  Porter and ARCH will be collaborating on an exciting project this fall and winter to create even more family-centered spaces for palliative and end-of-life care.  

 

Daphne Diego and Laurie Borden  – 802-503-8629           www.addisonrespitecarehome.org 

Addison Respite Care Home (ARCH), a board of volunteer community members, created a total of four end-of-life suites at Helen Porter Rehabilitation & Nursing and Porter Hospital because dying at home is not always an option.  While many people imagine their last breaths will be taken in their own bed, with loved ones around them, this can’t always happen.  Whether the death is a sudden or lingering event, someone who is young or old, with or without a support system – ARCH rooms provide safe, comfortable and person-centered care to the patient and the family. Unique accommodations within the ARCH rooms bring the feeling of home while partnering with a professional environment.          

              

These 5 organizations provide access to options and resources, everything from Advance Care Planning Specialists – who will assist you with the first step of an overall health and wellness plan – to Bereavement Specialists – who will guide you in the grief process after a death has occurred.  We often hear that it is overwhelming or confusing because of all the different services and organizations that deliver options at the end of life.  But we like to pause and ponder – aren’t we fortunate to have all these choices in our community, with experts who are attentive to our needs around dying?  Addison County is a good place to live, but it is also a good place to die.

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