As I pondered the topic for today's Blog I pursued the idea of discussing boundaries in our volunteer patient relationships. After researching and almost completing my preparation I was sidetracked. I learned of the grave condition of a beloved 10 year old pet and I began to reflect on my family's life over the last 10 years and how this gentle dog has enriched and enhanced our family life experiences. He has been a comfort during times of great loss and sadness. He has made us laugh with his silly antics playing with our cats! He welcomed the friendship of an iguana and even allowed him to hang out on his head!
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| Dunamis with Shawny the pet iguana! |
A quick search with Google turned up a most interesting website and today's Blog is dedicated to promoting:
Celebrate your life and share your journey through your own personal websiteAbout Hospice Journey
Hospice Journey provides free personal websites for people facing terminal illness. Hospice Journey is offered by The Samvara Project, a 501(c)(3) non-profit organization, in collaboration with hospice organizations throughout the United States.
The dying process is, for many people, the most profound and powerful time of their lives. Hospice Journey websites help people to reflect on their lives, feel the love and support of their family and friends, and express what matters most.
The Inspiration for Hospice Journey
Much of the inspiration for Hospice Journey comes from the experiences that one of Hospice Journey's founders, Marina, shared with her mom, Isabella, during the last months of Isabella's life. Isabella died from cancer in 2007 with support from a hospice in San Francisco.
Marina remembers the experience as the most important time that she ever spent with her mom. Isabella's final months were hard, but they were also the most "heart-opening" time, in Marina's words.
Expressing what matters most
One day, with a spark of inspiration, Marina sat down next to her mom's bed and asked, "Mom, tell me about the people you love." Theirs was a family which had never talked about love directly, so for them, it was a really big question for Marina to ask. Marina thought her mom might talk about her husband or the close friends she had, but instead Isabella took that opportunity to tell Marina how much she loved her, that she cherished memories of Marina's childhood, how sorry she was for the misunderstandings and tough times they had, and how deeply grateful she was that Marina had moved into her house to take care of her in those final months. In turn, Marina told her mom that she loved her, that all past arguments and hurt feelings were forgiven, and how much it meant to her to be the one to journey with Isabella at the end of her life.
It is in honor of that moment that every Hospice Journey website has a Reflections section with questions to spark conversations about what matters most.
Updating and coordinating friends and family
Isabella had a large community of friends and family members, some living in various cities around the world, who would call to find out how she was. Isabella was too exhausted from her illness to talk on the phone very much, and Marina was too busy caring for Isabella to return dozens of calls, even though she wanted to let people know what was happening and knew that it was important for Isabella and her friends to share memories and to say good-bye.
Hospice Journey websites make it easy to update everyone with the latest news and for friends and family to leave messages that can be read and savored again and again as a source of support and love. The websites also include a Lend a Hand page where friends and family can learn what help the family needs.
Disarming the fear and awkwardness around death
Before Marina took care of her mom, she didn't know very much about death, was afraid of it, and felt uncomfortable even talking about it - as many people do. With the help of hospice staff and friends who had been caregivers, Marina learned how to be fully present for her mom. By journeying with her mom, Marina faced her fears and supported her mom in a deep and compassionate way.
Hospice Journey websites provide a Resources section with websites and books which directly address the fear and awkwardness surrounding death, helping those who are dying and their friends and family to become more aware, less afraid, and able to make their time together heart-opening and profound.
See these ResourcesCreated with respect and love
Marina is a software engineer. In the years following Isabella's death, Marina shared her memories of caring for her mom with friends who are also software engineers. Together these friends decided to create personal, private websites as a useful resource for families facing the end of life, designed in a way that would have been helpful to Marina and Isabella.
Our intention for offering Hospice Journey websites is to help people to live well as they are dying, surrounded by the love and support of their family and friends, expressing what matters most and nurturing a sense of well-being and peace.
Your website will include the following features:
Updates
Use Updates to keep your family and friends informed about what's happening. You can post new updates as often as you would like to - every few days or even multiple times per day, at any hour. Your update message will be automatically emailed to each person you add to the Guest List for your website.
Guest Book
The Guest Book is where your friends and family send you their love and support, and share their favorite stories and memories.
Lend a Hand
Facing the end of life is an enormous challenge both for the person with the illness and for caregivers. Your friends and family want to support you. Let people know how they can help on the Lend a Hand page of your website.
Photos
Your website will include a photo album where you and your friends and family can upload favorite photos of important times in your life. This collection of photos is a beautiful way to celebrate and reflect on your life.
Reflections
The Reflections section is designed to help you reflect on your life and share what's important to you. Reflecting on your life together with the people you love is a wonderful way to spend time together, and often sparks meaningful conversations.
The Life Story page will help you to tell your story. Big Picture Questions offers a variety of topics that can be useful to contemplate and discuss with loved ones. Favorites lets you document the things in life that bring you the most joy. Forgiveness, Love and Gratitude will help you to say what you want to say to the people who matter to you.
Privacy
By default, your website will be private and available only to the people whom you share it with. Invite friends and family to your website by adding their email addresses to the Guest List.
If you choose, you can change the privacy level of your website from "Private" to "Open" to enable anyone who knows the exact web address of your website to see and use it.
Is Hospice Journey really free to use?
Yes, it is completely free. It is provided by a non-profit organization dedicated to serving families facing serious illness. There is no charge to use a Hospice Journey website, and there will never be any advertising. The websites are intended to be a beautiful place for you to come together with your family and friends to support one another and to reflect on what matters most.
We think this is a really wonderful way to use the Internet to provide comfort and support at the end of life.
– National Hospice Foundation
Hospice Journey is a fantastic free resource that does so much to support our patients, their families and our agency.
– Teri Collet, ACSW, LCSW, ACHP-SW, Director of Social Services at Community Hospice, Inc.
Our mission is to support the hospice movement in enabling people to live fully as they are dying, in dignity and comfort and surrounded by the people they love.
Bringing families and friends together
Hospice Journey's Updates and Guest Book messages keep people connected. The Reflections section offers questions that facilitate important conversations and guide people to think deeply about their lives. The Lend a Hand section provides practical suggestions on how to help patients and their caregivers. Learn more
Fundraising for hospice organizations
Each Hospice Journey website includes a "Support Hospice" section where a patient's family and friends may make donations to hospice in honor of their loved one. It's a gracious way to ask for financial support during the time of care, and family and friends appreciate the opportunity to contribute.
Raising awareness about hospice services
Every Hospice Journey website is a natural form of outreach to the community. As extended family and friends share a loved one's journey, they hear about the wonderful care provided by the hospice team and develop a sense of the true spirit of hospice. In addition, the Resources section on each website includes a carefully selected list of topics and helpful material about hospice and death and dying.
Let's get started!
If you are a hospice staff member interested in learning more about Hospice Journey, we'd love to speak with you. Please email us at info@hospicejourney.org or call us at(877) 365-5533 to start the conversation.
If you're ready to work with us, please sign up here. You are also welcomeencourage your patients and families to make their own free website by adding a link to Hospice Journey on your organization's website.
"Thank you for creating this website. What gets me out of bed in the morning is the desire to check for updates. It's a wonderful gift you have provided me."
— Dave W.
"My dad's Hospice Journey website has lifted his spirits 100%. Thank you!"
— Aimee B.
"My grandma loves doing the reflections, and the questions are prompting her to share stories with the family that we've never heard before."
— Michelle R.
The Hospice Journey Team
Hospice Journey was created by a team of friends donating their time and expertise in software engineering and testing, graphic design, and non-profit operations to be of service to dying people and their communities of family and friends, and to hospice organizations. The members of our team bring a depth of experience to the project from their work for software start-ups as well as some of Silicon Valley's leading companies, including Google, Dell, eBay, Citrix, and Apple.
Many people on our team have had family members and friends who were cared for by hospice. We're united by our shared awareness that facing death is a profound opportunity to learn to live and love more fully, and by our deep respect for hospice for helping people to live their final months and days with comprehensive, compassionate support and expert care.
Leadership
Our Executive Director, Vanessa Callison-Burch, became a Family Support Volunteer for the Hospice of Amador and Calaveras when she was 15. Her life has been deeply influenced by the patients, families and hospice staff she has been honored to know. Vanessa has worked in a variety of capacities on web technology projects for organizations ranging from software start-ups to major financial institutions. She is very happy to be putting her web technology experience and leadership skills to great use to serve hospice patients and hospice programs.
Our CTO, Luisa Magarian, brings extensive product design and development experience to the project. Luisa considers it an honor to be able to offer support to families through architecting and developing the web application that creates Hospice Journey sites.
Our Director of Engineering, Marina Esterlis, is an outstanding engineer who loves mentoring developers and bringing products to the world. Marina's life was touched by hospice in 2007, when she cared for her mom with the help of a hospice in San Francisco. You can read more about Marina and her mom's experience on our About Us page.
Special Thanks
The Hospice Journey team is grateful to numerous wonderful individuals — nurses, social workers, chaplains, directors, administrators, and more — from the following organizations who have reviewed Hospice Journey and offered insights and great ideas for how we can best serve hospice families.
Contacting Hospice Journey
If you need help with your personal website, we want to hear from you. We also appreciate hearing what you like about Hospice Journey and what we could do to improve it. We are continuously working to improve Hospice Journey based on people's suggestions.
(877) 365-5533
20660 Stevens Creek Blvd #320
Cupertino, CA 95014
Cupertino, CA 95014
- or -
If you would like to find out more about Hospice
Journey check it out on the web @
www.hospicejourney.org
As for my beloved pet Dunamis, he is soon to be resting in peace with our other pets. He is deeply loved and will be deeply missed.
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