A Visit With Family

 Being With Family

Margaret was in the final days of her life and each visit was a gift for both of us. Although Margaret was wide eyed and interested in my presence, I felt like this would be our last visit. Her breathing was calm and even and she kept her eyes open throughout the session.

When I left I thanked her for her receptivity and for the opportunity to express such tenderness. I stroked her forehead and held the side of her face for a moment. It felt complete when I left.

Two days later on my regular scheduled day to see Margaret I called the nursing home. The wellness co ordinator told me Margaret was actively dying and her daughter had asked if I would come. I said yes.

When I arrived Lauren and her husband were in the room with Margaret. Margaret’s breathing was fast as if she were going up hill. Lauren explained that the hospice nurse had come by and told her Margaret would probably die that evening and gave Margaret pain medication to ease the difficult breathing.

Lauren expressed gratitude for my presence and said she trusted me to do whatever I thought was appropriate.

Although Margaret’s breathing was fast it wasn’t labored or anxious. Margaret seemed peaceful; no anxiety. Her face was open and unfurled. I didn’t want to interfere. I sat by the bed, spoke softly and gently and touched Margaret’s arms, hands and legs. It felt perfect to just gently touch.

Lauren sat by the head of the bed and I sat at the foot. She observed and commented on the tenderness and closeness of the relationship. Lauren also touched her mother and spoke to how peaceful her mother seemed.

After a few minutes I offered Lauren a neck and shoulder massage and she accepted. Lauren sat by the bed touching her mom while I gave her a massage.  I talked with Lauren’s husband throughout the session. The room began to settle.

Lauren asked about the process of dying ; what to expect, and about the breathing. I was glad to be able to respond with basic information that she had not been told.

Before leaving the room I made the suggestion that Lauren stay the night; to just relax as much as possible and stay by her mother’s side. I also showed her how to swab her mother’s mouth and dab her lips with water.

This practical bit of information gave Lauren some insight of how to care for her mom on that last night; how to stay connected. It seemed grounding for both of us.

As I left the room I expressed my gratitude for the years of experience with hospice that allowed me to share in this sacred time with a daughter supporting her mother through the dying process. 

E-mail me when people leave their comments –

You need to be a member of Hospice Community Forum to add comments!

Join Hospice Community Forum

 

CAREGIVERS STORE

Recently Published!!
by Maryclaire Torinus

Surviving Hospice: A Chaplain's Journey into the Big Business of Dying Plus: How To Find a Trustworthy Hospice 

This narrative is an insider’s look into the hijacking of hospice by private equity and professional investors and the subsequent harm to patients, their families, and to the interdisciplinary clinical teams. It was released by a NYC publisher on October 31, 2023. For sale on Amazon.

The author, a hospice chaplain, tells end-of-life stories of her patients who were harmed by financially-motivated policies. This is a book for anyone who is embarking on making a choice about a hospice for their loved one, working chaplains, those in training, and those interested in what dying is like with a hospice who places patients as their primary stakeholders.

Maryclaire's experience working for an owner who sold to a private equity firm helped her to realize that the reputation and viability of hospice is in jeopardy. Her goal is to alert all who love hospice to rid it of professional investors.

— Stacy Juba, author, editor, and award-winning health journalist

"Powerful, beautifully written, and eye-opening, this book spotlights the inner workings of a multi-billion-dollar industry and the effect on patients, families, and hospice staff. The author shares poignant accounts of hospice at its best and worst and the hard-hitting truths she learned on her journey. A must-read for family members exploring hospice care."

— Laura Kukowski, CEO, editor, For-Profit Badger Hospice, LLC

"Maryclaire Torinus speaks with authority, providing this essential handbook for choosing a hospice care team and why that selection really matters."

Greg Schneider President, HVA, co-author of The Changing Face of Hospice Volunteering in Hospice and Palliative Care 

"When I first found out that Maryclaire Torinus was writing this book, I immediately contacted her because in my 25+ years supporting hospice volunteers, I have seen a gradual decline in the quality of care volunteers are permitted to provide the dying and their families. There are a variety of reasons for this that I describe in the Foreward of this book. Maryclaire provides invaluable insights that everyone should know, along with solutions to help others make the right choice in choosing a hospice."

Buy Now

=================

The Changing Face of Volunteering in Hospice and Palliative Care
Contributing Author - Greg Schneider
HCF Creator & HVA President

Volunteers have a long history of supporting the development and delivery of hospice and palliative care in most countries throughout the world. As hospice and palliative care services anticipate significant increasing and changing demands, it is recognized that volunteers have a vital role to play in supporting the future delivery of services. However, as society changes so too does volunteering.

This multi-author text explores the complex phenomenon of hospice and palliative care volunteering from an international perspective and considers the influence on volunteering of different cultures and constructs. The book also explores the likely impact of changes in hospice and palliative care on volunteers and considers how and why volunteering itself is changing and the subsequent implications for managers, organizations, and policy makers.

This book does not attempt to offer solutions to the many challenges ahead, but rather poses questions that may help to reflect on new possibilities and opportunities.

Review

"The book is well laid out and written in an easy to use manner. It begins with setting the scene of volunteering and the modern context of hospice and palliative care. The book is well referenced and covers a range of topics making for a balanced and thought provoking read." -- Nursing Times

"If you run a palliative care volunteer service, or a palliative care service with a volunteer program, you need to read this book. Not only will it give you an in-depth view of where things are at, but also how things are changing in countries from around the world." -- Roger Woodruff, IAHPC Newsletter

 

Editors

Ros ScottHonorary Research Fellow, University of Dundee, UK and Co-chair, EAPC Task Force on Volunteering in Hospice and Palliative Care. She is a researcher and voluntary sector consultant with a background in organisational development, research and the development of volunteering and of palliative care organisations. 

Steven Howlett, Deputy Director at Roehampton Business School, London, UK where he teaches undergraduate and post graduate courses in management and ethics. Previously he was Senior Research Fellow at the Institute for Volunteering research where he completed many studies on volunteering.
 
Buy Now