Home > Newsletters > MAY 2023
Bonding Around Deathcare in Latin America
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by Douglas Simpson
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Last month I boarded a plane in Newark, New Jersey, to fly to Quito, Ecuador, to join the first gathering of the Red Iberoamericana de Acompañamiento en la muerte y el Duelo (Ibero-American Network of Accompaniment in Dying and Grieving). I was eager to go and learn and to be together with others who have been called to do this work. I spend a lot of time thinking about INELDA, our team, our learners, our members, and the expansive deathcare community. I look for ways to support those seeking to become end-of-life doulas and others who come to learn more about death and dying. I have never been in a position where my beliefs are so aligned with the work that I am doing.
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| doula Profile |
Carole Silvoy
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Carole is a former American Sign Language interpreter, a singer and actor, a lay minister, and a communicator who has done work in more various situations than she can count. She lives near Bethlehem, Pennsylvania, which is equally north of Philadelphia and west of New York City, with her husband and three cats.
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| Q&A with Carole |
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When and why did you decide to become an end-of-life doula?
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When my grandmother Gladys died in August of 1990, it was the first time I was with someone and helped them cross over. Despite my sense of loss, coaching her as she went came so very naturally to me. After that, it happened seven or eight more times that I was with someone when they died, and it was never uncomfortable. Several times I was part of the time leading up to death and planning for it.
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Creating Visibility Workshop
May 17 | WED 7-10pm ET
Looking to offer services in your community? Develop an action plan to build visibility, credibility, and contacts in this workshop. Whether recently trained as a doula or having served the dying for years, participants will walk away with ideas, tools, and best practices to implement right away. Join educator Cloud Conrad for an evening of inspiration, ideation, and implementation planning for marketing your doula services. | REGISTER |
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Navigating Dementia
June 7-10 | WED, THU, FRI 6-9pm & SAT 12-3pm ET
Working with clients who have dementia calls for specialized knowledge and skills. This class is designed to unfold the “typical” progression for an Alzheimer’s type dementia and explores doula methods to attend to the dying when dementia is present. INELDA’s Navigating Dementia class is intended for death doulas who have completed an end-of-life doula training. Classes will meet for four sessions with one optional weekend group Q&A led by educator Cloud Conrad. Click to see the full schedule | REGISTER |
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| MEDIA OF THE MONTH |
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| A Conversation With Hannah Fowler, Impact Producer of The Last Ecstatic Days |
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by Loren Talbot
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Synopsis: The film The Last Ecstatic Days follows the story of Ethan Sisser, a young man afflicted with brain cancer. He had been sitting alone in his hospital room, but when he begins live-streaming his death journey on social media, thousands of people around the world join him and celebrate his courage. Still, Ethan envisions more—to teach the world how to die. VIEW TRAILER
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| Acceptance, Denial, and Related Responses to Death |
by Lara Stewart-Panko
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Shall we agree that there’s an implicit message we often receive that acceptance is “good” and denial is “bad”? In Elisabeth Kübler-Ross’s stages of grief model, denial and acceptance are used to name two of the stages, and while we know the stages are not meant to be interpreted as neither linear nor hierarchical, most of us will automatically see denial as an “inferior stage” and acceptance as a “healthier stage” to aim for. We might think, “Let’s get past the denial stage to acceptance, because we really need to work with what is.”
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Let’s reconsider how denial and similar responses very much can be working with “what is.” When reality shifts in a seismic way, as it does when we receive a terminal diagnosis or experience the sudden death of someone we love, denial can be a very protective, healthy response, and we’re wise to honour it, not attempt to push anyone past it. Acceptance will come as it comes—in whole or in part—and we need not impose an agenda on another’s process.
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| INELDA UPDATE |
RAISING AWARENESS AND FUNDS FOR THE PEOPLE EXPERIENCING HOMELESSNESS PROJECT
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In the event you missed our webinar last month, INELDA has committed to raising $10,000 in 2023 for The People Experiencing Homelessness Project.
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The PEH Project was created to develop a model around supporting the unhoused and to build a curriculum around harm reduction and trauma-informed care at end-of-life. Despite more than one-third of dying Americans using hospice care, there is no current data on how many individuals experiencing homelessness have access to it. READ MORE
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| CERTIFICATION DISCOVERY CALLS |
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Starting this May, INELDA will be hosting monthly discovery calls for certification and recertification questions. On the third Wednesday of each month from 7-8pm ET, we will host a Zoom call to provide an overview about each process and to answer any specific questions relating to certification. READ MORE
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HOSPICE VOLUNTEER OPPORTUNITIES IN NEW JERSEY
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| Swan Hospice, located in central and southern New Jersey, has volunteer opportunities for end-of-life doulas who would like experience and hours. Swan Hospice provides supportive, holistic care that promotes comfort for terminally ill adult patients and security for their families. READ MORE |
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| FIRST HOSPICE DOULA TRAINING COMPLETE |
| This past month we launched our newest doula training to support individuals working in hospice environments. This training has been specifically designed for care provider organizations such as hospice, palliative care, and clinical care teams. READ MORE |
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| IN THE NEWS |
- Matt Pearl, a national correspondent for Scripps News, joined INELDA at our Nampa, Idaho, training and created this story about training to become an end-of-life doula. It will be featured on over 60 local news stations across the United States.
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| INELDA’S MAY WEBINAR |
| Monthly Webinar |
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| Exploring End-of-Life Needs: Rural Opportunities and Challenges |
May 31 | WED 7-8:30pm ET
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Join our May webinar for a conversation about end-of-life support in rural communities. Populations living in these areas often encounter barriers to access due to distance of services, financial limitations, health literacy, and stigma. Learn about outreach to two rural communities from Andrea Arnett, director of volunteer services at Community Hospice in Ashland, Kentucky, and Elizabeth Johnson, executive director of The Peaceful Presence Project in Bend, Oregon.
Andrea has served as the director of volunteer services for Community Hospice for six years and is an INELDA-trained EOLD. She is a certified volunteer administrator and has over 10 years of experience working in rural communities in eastern Kentucky. Elizabeth is the executive director of The Peaceful Presence Project. She has trained with University of Vermont’s Larner College of Medicine, A Sacred Passing, and INELDA, and holds a master’s in community planning and not-for-profit management.
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INELDA educator Wilka Roig will moderate this engaging conversation that explores the challenges and opportunities of deathcare in rural environments and the outreach and interventions by these two organizations.
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Cost: Free with INELDA Tier 2 & 3 membership | Tier 1 and nonmembers $15
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| PRACTICE CORNER |
| TOOLBOX TIPS |
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As a memory care administrator, I am often asked about the best time to acquire 24-hour supervision. I usually advise that when safety awareness is compromised, it’s time to consider care needs. But for those dealing with early onset Alzheimer’s, you need a plan before then. Young onset can often be frontotemporal in nature, which can cause dramatic changes in personality, including engaging in dangerous behavior. I recommend getting involved with The Association for Frontotemporal Degeneration or any association for dementia that correlates with the type of dementia one is dealing with.
—Steph Cuzino
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| SHARING SOURCES |
| EXPERIENCE CAMPS |
| Experience Camps is a nonprofit that transforms the lives of grieving children through summer camp programs and innovative, year-round initiatives. Through compassion, connection, and play, Experience Camps allows grieving children to embody a life full of hope and possibility. |
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From its first camp in 2009 serving 27 boys in Maine, the camp has grown to serve nearly 1,000 kids and teens (ages 8 to 18) at 10 camps in six locations around the country. They offer 12 weeklong, overnight summer camp programs in California, Georgia, Maine, Michigan, Maryland, and Pennsylvania, serving grieving children from 42 states and 7 countries.
There are still available spaces for campers and male-identifying counselors for the 2023 summer program. Those interested in volunteering can learn more here.
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ASK INELDA
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What would you say to somebody who’s going to be doing this work? At what point did you feel really ready to do it? And is it an ongoing thing that you’re constantly facing in this process? —Training participant
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| Educator Wilka Roig: We are never going to feel “ready.” In order for us to be able to respond to what is there when doing this work, we need to come in with a beginner’s mind. How do we cultivate not knowing? We practice being comfortable with discomfort. One of the many beauties of this work is that not only does it give us permission, but it requires us to be fully present with ourselves and with what is arising at every moment with every breath. It is actually a huge relief. This work is a lot about just showing up fully and deeply knowing “I don’t have to be anywhere but here. I don’t have to think about anything but being here. I don’t have to feel anything except for whatever arises here.” It’s incredible. READ MORE
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| Please submit questions to [email protected] |
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| SELF-CARE |
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Actively Hearing Oneself
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As doulas and care providers we are taught to listen—to pause and truly hear what the person across from us is saying. We ready ourselves prior to connecting, working to clear our mind, sometimes meditating, preparing ourselves to attend to the needs of another. Prepping ourselves to actively listen is a practice in its own right, but what if we decided that the person who needs to be heard is ourselves? Determining what our own needs are can be addressed with the same care and attention that we provide to others.
Cultivating the relationship with oneself is essential to being able to identify what those needs are. To be able to “sit across” from yourself and actively hear the internal voice is what we need to set our priorities and boundaries. Too often we are responsive and take on the needs of others before ourselves, but what if we tended to those needs with the same focus and care that we do when supporting others? This internal shift of self-awareness can provide a newfound way of walking through the world with reconfigured priorities. READ MORE
—Loren Talbot
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| News Briefs |
| by Brandon Glick |
Considering Palliative Care in Refugee Camps
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| A recent article published in PLOS Global Public Health discusses at length the access to, and increasing importance of, palliative care in refugee camps. This study drew upon roughly 100 interviews held in refugee camps in Rwanda and Jordan, and in Ebola treatment centers in Guinea with staff of humanitarian and health care agencies. While interviews concluded that many consider palliative care to be unneeded or unfeasible in “hotspot” areas of crises, the authors of the article still push adamantly for care aimed at reducing the suffering and increasing the quality of life of people living in refugee camps. READ MORE |
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Regular Meditation Practice Can Benefit Chronic Pain
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| The efficacy of “third-wave” psychotherapies (e.g., meditation and emotion-based treatments) in treating patients with chronic pain conditions is discussed in a recent study published in the International Journal of Environmental Research and Public Health. A meta-analysis of 31 published studies, this systematic review scrupulously examines the effects of these treatment types in relation to the frequency and duration the patients invest into them. READ MORE |
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More Research Needed on Dementia in Latin American and Caribbean Countries
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| A survey posed and analyzed by the Alzheimer’s Association breaks down the startling lack of knowledge about dementia biomarkers in Latin American and Caribbean (LAC) countries. The study finds that “neuroimaging is the most used biomarker [in LAC countries] (73%), followed by genetic studies (40%), peripheral fluids biomarkers (31%), and cerebrospinal fluid biomarkers (29%),” though the authors are careful to note that these numbers may be a product of what is available to health care professionals rather than an actual correlation between usage and efficacy. READ MORE |
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| The Final Word |
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| Mirages |
by Yanick Dargout Maxi
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At the gates of night
Waiting still for dawn
Dreams and words
Suspended in time
High in the sky
Draped in blues
Colorless rainbows
Star sparks swept by the wind…
At the gates of night
Waiting still for dawn
Nothing but silence
Drowning in sorrow
Rays of emptiness
Tracing your shadow
At the gates of night
Until the midday sun
Words stand still
Broken, shattered, half buried,
Gray like your ashes
Scattered in the wind
Tired of existing
At the edge of silence…
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Accessible, Equitable, and Compassionate Deathcare
© INELDA 2023 International End-of-Life Doula Association is a
501(c)(3) tax-exempt nonprofit organization
Tax ID#: 47-3023741
Email us: [email protected] | Phone: 201-540-9049
Donate to INELDA |
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