volunteers (6)

I Made soup

Last week while preparing for a presentation on listening, I leaned back in my chair at the computer wondering what story I could tell about listening deeply. Not just involuntary hearing but truly listening to the meaning of the words. Listening with my heart as well as my ears.

My heart burst open and I started to cry. I heard my mother say "I made soup."

My mother had severe crippling arthritis, scoliosis and heart disease. Her physician was an osteopath and she combined acupuncture, herbs, supplements and homeopathic medicine in her health care. She never went to the hospital .She would simply stay in bed for days at a time.

Cooking was very painful for mother so friends would bring food or take her out to eat most of the time. This was her program for the last 20 years of her life.

I*n her last few months every time Mother called me she would say "honey, I made vegetable soup. It’s so good!"

My response was always , "Great Mom." I actually remember being somewhat bored by these conversations and not really interested in her soup.

I harbored a well of anger with my mother and didn’t work through that before she died. It clouded all our communication.

Last week, 16 years later I got it. "I Made Soup"meant, honey I’m out of bed today; Im feeling strong and I was able to cut vegetables. It’s a glorious day!"

" I Made Soup" was a statement of mother’s courage and independence and her ability to push through her suffering .

Deep Listening is a practice and a philosophy developed by Pauline Oliveros. It is said in this practice that listening deeply requires the temporary suspension of judgment and a willingness to receive new information. It is a process of learning.

Truly listening allows us to not only hear what someone says and, what they think, but allows us the understanding of what it means to them and why it matters. There is perhaps no greater way to show our respect than to truly listen to someone.

Many blessings and please share your listening stories . Your stories mean so much to the community.

Irene smith

www.everflowing.org

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Everflowing Approach to working with Pain

Reading the Massage Magazine special issue on pain relief I am reflected into how working with pain differs in my hospice massage practice from more traditional modalities.

A couple of months ago I was working with an intern at an inpatient hospice. We went into see a woman with cerebral palsy who was not on our list of referrals.

Sabrina had spent most of her life in hospital wards. Her body was a roadmap of surgeries and called out loudly for tenderness.

Sabrina spoke of her legs and back being in great pain. She continued to speak of her discomfort as I positioned myself sitting comfortably at the foot of her bed. As I slowly lifted the sheet to assess her right leg my heart shed a tear for the dwarfed limb that was exposed.

I cupped my hand around the thigh and softly spoke," I am honored to offer this limb some tenderness....I feel your leg loves the attention.... Im so glad were here."

While gently holding and tenderly petting this leg Sabrina replied, "If someone had done that years ago I might still be at home."

I covered the leg as Sabrina asked me to touch her back. Although she was in a lot of pain she requested that a nurse position her onto her side so I could touch the exact spot.

After positioning was completed I sat comfortably behind Sabrina on her bed, uncovered her back and with Sabrinas permission I came very close. With one hand slipped under her head pillow as to hold her, I simply laid my other hand on her back and said, "Oh I know you have been in pain for a long time. I'm so glad were here."

As I became comfortable, slowly exhaling, I felt Sabrina going to sleep. Her pain had been validated. She expressed her gratitude before the silence..

After a couple of minutes I slowly removed my hand from underneath her pillow and changed places with my intern.

The Everflowing intention is never to remove pain from someones body. The intention is to validate and honor the symptom ology that is being experienced, and to create an environment where the clients anxiety about having pain can be eased.

We are in a culture that insists that pain is something we have to get rid of. We essentially make pain wrong therefore when pain appears we are afraid of it getting worse; we defend ourselves, hold ourselves tightly. We want the pain to go away. This directs a profound degree of energy to the pain, and creates anxiety.

As an Everflowing practitioner, I want to create a resting place as I walk into a room or up to someones bed; a place of stillness first, and then a place of very gentle movement like a breeze or a soft wave of water as the tactile relationship begins. A place where there is no resistance; a vulnerable place.

This is achieved through slow body movement, slow speech, slow audible breathing; and my willingness to find my own place of physical comfort; just being comfortable and breathing as I slowly speak to my client. I am just a witness.

This resting place, this alternative rhythm, eases a lot of tension in the room. There appears to be more empty space and the client might begin to find comfort as well.

If I can stay grounded and comfortable in body and mind then the static and resistance has been broken. The cycle has to reestablish itself.

This change in the pain cycle can cause a decrease in the pressure being experienced by the client and give the client an alternative strategy for coping with the pain.

Pain is multidimensional when someone is dying and may be my clients most familiar response to his or her condition. I cannot assume that alleviating it is the kindest strategy. I feel I must validate the existing relationship and give models for reestablishing a more compassionate communication with ones self and ones environment.

This is the Everflowing approach to pain. I look forward to your sharing your approaches and stories.


Blessings

Irene Smith www.everflowing.org

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Professional Concerns

I have been concerned for a long time about the way the field of hospice massage is growing. As with any therapeutic intervention that becomes mainstream ,the integrity of the field is suffering.

Practitioners with the desire to serve ;however without sufficient training to work with dying persons, are being hired by program co ordinators that have no knowledge in what is needed to facilitate a safe massage program.

I am alerted to hospice programs taking on massage practitioners that have no training in adaptations from working with healthy people on a massage table to working with seriously symptomatic persons in beds.

Many hospice co ordinators are corporate administrators who believe that a massage certification is all a practitioner needs to massage hospice clients.

Although some schools have continuing education programs for working with the dying, massage schools do not teach working with dying persons in core training as a general rule. Sometimes the topic will be minimally addressed in a geriatric or oncology course.

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Twenty seven years in hospice massage gives me the experience to outline what have proven to be challenges in this field ,and areas of training needed for safe relationships between clients and practitioners, and organizations

If you are a massage program co ordinator, educational director for a massage school, or hospice massage practitioner these are a few of the areas that require knowledge in this field.
*Hands on precautions as pertains to massage not nursing.

*Modification of standard massage techniques to meet the needs of the physically and emotionally fragile client. This includes; intention, amount of pressure facilitated through the hands, the speed of technique delivery, and the duration of a session.

*How to adapt massage for working with people in beds and chairs; including body mechanics for the practitioner. Practitioners need to know how to comfortably reach the client to prevent injury to themselves.


*How to gather sufficient information for treatment assessment.

*How to work in a home setting. This involves working in a bed; being with family; communicating with other team members; reporting; setting limits ,and what to take as equipment.


*How to cope with the emotional impact of clients dying which includes personal coping strategies as well as support systems.

This is a specialized field of service that requires practitioners to have sufficient information, supervision and support for the safety of the client and the massage practitioner.

If you are an administrator , educational director or practitioner reading this please go to my website www.everflowing.org and check out the educational resources. Resources are available to give you the information you need. You may download articles for free that will serve you well. You may also ask questions on this site.. Go ahead use me!!!

Many times patients are so hungry for touching, and practitioners are so hungry to make a difference that they don"t recognize the difference in a safe and unsafe session. It’s up to the integrity of the schools, co ordinators and teachers in this field to see that wisdom prevails.

Blessings

Irene Smith www.everflowing.org

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A Balance To It All



 I woke up excited. I had the opportunity to facilitate an in service about Touch Awareness in Caregiving to a group of hospice nurses in my favorite hospice.

When I arrived I was told by the Nursing Director that a resident had died the night before. She had been with him all morning as staff and friends had participated in bathing his body and preparing him for his journey from the house.

All staff, including the nurses attending the in service, were asked to participate in the ceremony of departure. The body would be carried out shortly before the in service was scheduled to end, therefore I was asked if I could end a bit earlier than scheduled.

 The door bell rang; it was time to come to the dining room for the ceremony.

Once there we formed two lines and a bowl of rose petals appeared. We passed the bowl around and all took a handful of petals. Then we were told the deceased wanted us to sing Amazing Grace.

While singing, two well dressed men came down the stairs slowly carrying a gurney with the deceased gentleman draped in a shroud, bringing attention to the serenity in his face. It could have been the streets of New Orleans!

As they passed through the dining hall between the two lines  we sang as we sprinkled rose petals on the body.

There I was looking into the face of the deceased, someone I had never known, who didn’t know me, singing, welling up with tears, sprinkling rose petals and realizing that the sacredness of the moment transcended personal relationships.

This was honoring the cycle of life; the human spirit; human suffering and the profound ordinariness of this extraordinary morning.

As the gurney proceeded out the door and through the garden we began to take our places at the table; some with bag lunches and me looking in the fridge for leftovers.

The lunch was somewhat silent for a few minutes. We were digesting food for the soul. Our eye contact and quiet breaths together told the story of the blessed honor we had shared. Then, as if a bell had rung, the talk about the afternoon schedule began.

I finished my lunch and left to go down the street to see a client in another residential care facility.

As I walked outside I was aware of people walking fast; wearing black, and looking at their palms with plugs stuck in their ears. I had to be careful as everyone was in some kind of  personal isolated state, connecting with life through cyberspace. The outside world suddenly felt  empty.

I paused. Remembering the gentle aroma of rose petals, I expressed silent gratitude for my morning in the hospice.

Blessings,

Irene Smith www.everflowing.org


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Identifying Pain At The Bedside


How do we identify pain? What denominators do we use to quantify pain? Does our need to be free from suffering play a role in this denominator and how do we separate these fine lines?

These are constant questions for me in working with the dying. I have strong belief systems about how I want to die and what I want and don’t want in the process. Do these “don’ts” interfere with my ability to clearly hear my clients and act as a non-judgmental witness?

As an advocate of alternative medicine, I am a believer in expression rather than repression. When I have pain I want to feel it. I want to be in relationship with my pain so I know how to work with it and move with it without contributing to the physical and or emotional stressors that might increase the level of discomfort experienced.

Louise was in the final stages of her life when I was asked to see her 3 times a week. That was in October. She died in February.

Louise had no control over her body. She could raise her right arm and turn her head slightly to the right. Sometimes in a session she kept her head in constant movement. Louise was grateful, always said thank you for coming and always greeted me with a smile. I consider her level of trust a precious treasure and often related that to her which seemed to please her.

She was moved from the skilled nursing facility to the hospice in December. Once in the hospice she became quite agitated and began calling out for help and moaning loudly. Of course, how to relieve Louise’s pain was top priority and her discomfort was partly assessed through the degree of  vocal expression.

Pain medication would quiet the moaning, however sometimes when I went to see her after being told her comfort had been restored I would find her whispering “help” in a voice that could not be heard. The need to call out was still present. The team was relieved. Louise was quietly resting.

There were also times when Louise would call out that she hurt all over and pain medication subsequently  brought her needed relief. Other times she would decline medication and a volunteer holding her hand was the perfect support.

The agitation and vocalizing lasted for about a month. Arnica and Rescue Remedy were introduced as adjuncts to her pain medication to see if that would help the anxiety beyond the pain.

I am reminded of two visits when Louise was yelling out and I told her the nurse would be in to give her  medication. ”I don’t want any medication” she said.

Through many of our sessions Louise called out for help and moaned loudly, declining medication and stating she was not in pain. Maybe the moaning was pleasure. Sometimes I’d ask if the touch felt good and she’d say yes. Maybe the moaning was bliss. Sometimes she called out “oh” the entire session.

Once, in the last couple of weeks, I arrived and the volunteer with her said Louise was moaning loudly but she did not want any medication.

This is a human being that was unable to move her body for many years. The only movement she could produce was through her voice. Should her comfort be assessed by the silencing of her voice or by the ability to use her voice?

When are sounds pain and when are they a coping strategy for releasing pain? How fine the line.


“When I die allow my voice to fill the temple and the movement of my limbs to be as wind through the trees. Do not silence or still this passion that has been so responsible. Allow me to participate in this dance with spirit, loose and wild and free. Allow me my process.”

Irene smith

I would love to hear your feed back on this topic.

Blessings,

Irene Smith

www.everflowing.org
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The Language of Touch

Greetings,

The attached link is to an Everflowing you tube trailer showing a touch exercise during a Touch Awareness in Caregiving day long workshop . The participants are hospice caregivers . The person being touched is a piece of clay. The sculptor[ the person touching] was creating the upper torso ,face and head. The voice is me, Irene Smith, in a dialogue that has been added. What you hear is not the instruction to the participants.

I would love to hear your comments

https://www.youtube.com/watch?v=jc6DKfXXyZE

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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

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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.
 
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