It's Hard to Live without Hope

My Personal Story Regarding Hospice and Palliative Care
It was Tuesday evening, January 6th, 2009
My own little girls were on a scheduled visit with their father for a few hours and I was at my parents along with my sister eating tacos, all four of us together, at their "breakfast" table.
My Dad was feeling good, he was already on his second taco, I was filming him telling some of his favorite memories and his eyes were dancing in response to the joy he had for life, for us, for the memories he was sharing, for the time we were presently having...
The "C-word" was still looming, but the hope we had discovered that day had lifted enough for us to be able to breathe again a bit...it felt so good to have even just a glimmer of hope again...we could smile now, even laugh, really enjoy each other's presence.
Ironically hope actually had been found online, frantic googling for a glimmer of it was ultimately successful! For just hours earlier I had stumbled upon this term we'd all never heard of before called Palliative Care.
As it turned out, platelets were NOT THE ONLY thing that could be done for my Dad! There were other options, clearer directions, definite comfort for his pain, even potential treatments available for the man who supposedly had none.
Palliative Care had given us some hope back that day, the mere knowledge of it alone provided such an immeasurable gift of healing to our pain laden hopeless hearts.
My Dad died five days later, but those all too brief moments of hope, I will always cherish.
I carry them in my heart today and even now, just over a week since he moved to Heaven, they are somewhat able to soothe the intense pain of losing him.
If I could live forever in only one moment, it was that one...the moment we found hope again...it's so hard to live without hope...
Please contact your local elected officials today and urge them to increase Palliative Care Awareness via the most effective manner possible.
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

Comments

  • Sara..You have a very unique and beautiful way of expressing your feelings.My happy moment was on Minnie's 65th birthday party.She hadn't eaten anything but a little jello and ice cream for the previous 3 days and that day she had a big piece of birthday cake and ate it all!!She was so happy that day!All her children and grandchildren and friends were there for her.In only two more weeks she would again be in the hospital,the begining of the end,but that day I will always treasure like you did with your dad.I love you Sara..Thank you for being my friend."BIG HUGS..ALWAYS"..john
    http://feelings.My/
This reply was deleted.
 

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