VOLUNTEER SUPPORT GROUP

MONDAY, JUNE 2, 2025 (5:00-6:30PM)

Aloha Patient Volunteers! Please MARK YOUR CALENDARS to attend our meeting on June 2nd. Come share your experiences and insights and increase your knowledge and skills! These meetings are for all active patient volunteers whether or not you are currently serving a patient/family. We look forward to seeing you! Light refreshments provided; Kauai Hospice Conference Room. (RSVPs are appreciated.)

"What do we live for, if it is not to make life less difficult for each other?" — Dorothea in Middlemarch, by George Eliot

VIDEO: DYING FOR BEGINNERS - Demystifying Death / A Palliative Care Specialist’s Practical Guide to Life’s End

BY: KATHRYN MANNIX, MD

(4:18 minutes)

ENDWELL, the nonprofit whose mission is to transform how we think about, talk about, and plan for the end of life, has featured an excellent animated guide on what happens when we die. Written and voiced by Dr. Kathryn Mannix, a longtime palliative care physician and educator, Mannix has gently demystified what dying actually looks like and feels like when it unfolds with care. This captivating video offers a clearer picture to help ease fear, and invite understanding. It makes a powerful case that there’s deep value in discussing and understanding death well before it touches us. Click to watch.

COMMENTARY: WHEN PATIENTS DIE: A MYELOMA SPECIALIST GRIEVES

BY: MANNI MOHYUDDIN, MD (Medscape Oncology - April 28, 2025)

"Like many other medical students, I was drawn to oncology because of the amazing relationships that I saw cancer specialists form with patients and their families. Yes, the science was cool, but it paled in comparison to the beauty of these close ties. We form such beautiful bonds with patients as we guide them through the highs and lows of treatment. And that is why I struggled so profoundly with the abrupt separation created by a transition of a patient to hospice. How can it be okay for me to be seeing a patient weekly (and sometimes more often) for such a long time and then suddenly never see them again after they transition to hospice? How can we just disappear from their lives at such a critical juncture?" Click to keep reading.

DOCUMENTARY: CAREGIVING

TRAILER (3:36 minutes)

Streaming begins May 27, 2025 on PBS.org & the PBS App

Broadcast Premiere June 24, 2025 at 9 p.m. EST on PBS

This powerful documentary, produced by actor Bradley Cooper, will shine a national spotlight on the often unseen yet vital work of caregivers. The film’s message, along with a national engagement campaign, reveals the challenges and immense value of caregiving. It also addresses the gaps in the American care system. The two-hour documentary intertwines deeply personal stories of caregivers, the challenges they face, and their triumphs. “The caregiving experience I had with my father inspired this documentary,” Cooper said. “During his battle with lung cancer, I came face to face with the overwhelming realities of taking care of a loved one.” Click to watch the trailer and to learn more about the Well Beings campaign. 

HOW DO YOU GET A TERMINALLY-ILL PATIENT TO ACCEPT HOSPICE CARE?

BY: BARBARA KARNES - A Blog on End of Life (April 29, 2025)

"What do you say to someone to get them to accept hospice? Well, one thing to consider asking after explaining the services hospice offers is what they think will happen if they get on hospice too soon. The answer is often a really good thing – the person gets discharged from the hospice program. They have stabilized or gotten better and no longer need the guidance that hospice offers. Great! Eligibility is addressed for two 90-day periods and then a 60-day period. But you can apply for numerous 60-day extensions after that.

Getting on the hospice program when a person’s condition is deteriorating in spite of all the treatment that has been given means accepting a different kind of medical help. It is not saying we have given up hope. It is not implying that death will be tomorrow or next week. What is so bad or scary about that? The scary part is that everyone has to admit, on paper, that there isn’t going to be the cure everyone was praying for, that life isn't going to end with a “happily ever after.” Hospice services can support and guide everyone during that scary time.

So how do we get someone who needs it on the hospice program? Talk with them about all of the above. The hard part then will be to stand back and let them make their own decisions. It may not be the decision we think is best for them but at least it will be based on fact not fear."

ARTICLE: ALZHEIMER’S PREVALENCE TOPS 7 MILLION FOR THE FIRST TIME

BY: JUDY GEORGE (MedPage Today, April 29, 2025)

New data from the Alzheimer's Association estimates that 7.2 million Americans age 65 and older are living with Alzheimer's disease; and 74% of those people are 75 or older. More survey statistics show that:

• 91% said they would want to take a simple biomarker test for Alzheimer's before any symptoms appear
• 92% said they would take medication to slow Alzheimer's progression
• 94% would be interested in options to alleviate symptoms
• 90% would be interested in support for lifestyle changes

Click here to read source article (3 minute read).

YOUTUBE: WHEN A BODY TRANSFER BECOMES TRAUMATIC

BY SARAH KERR, PHD - Founder, Sacred Death Care

(1:58 minutes)

“Sometimes it's not just the death itself that leaves lasting marks on our hearts—it's the moments that follow” writes Dr. Sarah Kerr. In her video, she discusses a specific kind of trauma that can occur during body transfer, and how simple changes in our approach can make a profound difference in how families process their loss. Watch this worthwhile clip.  

BOOKS FOR THOSE WHO ARE GRIEVING

Grief Day By Day-Simple Practices and Daily Guidance For Living With Loss - By Jan Warner

365 daily reflections and quotes -- a year’s worth of readings that can be read in order or dipped into to find support no matter what you are searching for. These reflections are divided into weekly themes with activities that help you process your feelings and learn skills for the gentling down of grief. 

Grief One Day at a Time: 365 Meditations to Help You Heal After Loss - By Alan D. Wolfelt, PhD 

Those who grieve will find comfort and understanding in this daily companion. With one brief entry for every day of the calendar year, Dr. Wolfelt offers small, one-day-at-a-time doses of guidance and healing. Each entry includes an inspiring or soothing quote followed by a short discussion of the day’s theme and a succinct meditation.

BLOG: THE 9 THINGS NO ONE TELLS YOU ABOUT SCATTERING ASHES

BY: TRE MILLER RODRIGUEZ (Modern Loss)

The scattering of ashes can be a unique and unforgettable way to say goodbye to your loved one. Tre Miller Rodriguez, the ‘Mourning, Noon & Night’ columnist for Modern Loss writes: “Within hours of my 40-year-old husband’s fatal heart attack in 2009, it dawned on me that I would have to honor his cremation wishes.” Her fun, personal essay reveals everything she wishes someone had told her before she spread her late husband’s ashes around the globe. Click to read Tre's story. Modern Loss is an online community offering candid conversations about navigating life after a death and creative ideas for exploring loss.