Today, so many families are scattered across the world that when a family member becomes diagnosed with a terminal illness, it is difficult to keep everyone updated on the status of the patient. Patients often do not have the energy for many visits or phone calls while ill. Aside from this, caregivers don’t always have a chance to give updates to family members however, many patients and caregivers have found out how to stay in touch by interacting online.
A study posted on Mashable described a phenomenon occurring in the world over: Facebook. This displayed how after the death of loved ones, over 1 billion people turn to Facebook to cope with their loss. From couples to families, colleagues to friends people are coping with losing loved ones by interacting with the Facebook profiles they leave behind.
For those not on Facebook, a free personal website for people facing terminal illness is available known as, Hospice Journey. This site helps patients reflect on their lives, support their family and friends, and helps patients express their feelings in a section called Reflections. This section has questions to spark conversations about what matters most to them. Created by the Samvara Project, a 501(c)(3) nonprofit organization and with the collaboration of several hospice organizations throughout the United States, Hospice Journey is a free site dedicated to serving families facing serious illness.
Creating a personal website helps families and loved ones stay in touch by exchanging messages, memories, and stories. It also helps create a community of those miles apart but offering immediate support, nurturing and helping to facilitate a sense of well-being and peace. According to the site’s Mission Statement, “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.”
In addition, the website provides a section with resources such as other websites and books that directly address the fear and awkwardness surrounding death. This helps those who are dying, their friends, and their families to become more aware and less afraid. Hospice Journeys can be used to share reflections on life and experiences of dying, as well as a place to reflect on the important moments of the patient’s life and some of the bigger questions they are currently facing.
The website itself is very easy to create and can be made public or private. Email updates can be sent about the patient’s health status to any contact and the site also supports the ability to upload as many photos as desired. There is a sample Hospice Journey website created to show an example of what their page would look like. You don’t have to be a computer expert to create your site. It’s user-friendly, visually appealing and they have an extensive FAQ’s page addressing common questions and technical issues.
The home page would typically show a photo of the patient and a personal welcoming message. From there, there are links to Photos; Updates; and a Guest Book where you can share greetings, stories, memories, and reflections. The Reflections section contains four additional components:
- Life Story: The patient reflects on their life;
- Big Picture Questions: Perspectives on the patient’s views on life;
- Favorites: Favorites of the patient such as holidays, ice cream flavors, books, quotes, flowers and so on;
- Forgiveness, Love, and Gratitude: As the name implies, this is a place where the patient can express their feelings of forgiveness, love, and gratitude.
A particularly helpful feature to the patient and family is the Lend a Hand portion of the website. It offers details on the patient’s requests for visits (length of time; what the patient would enjoy doing during the visit) and a Caregiver Assistance option if anyone visiting the site would like to assist the caregivers with any help needed. There is also a link to the volunteer coordinator (it could be a family member) to manage how else someone could help.
In addition to the Hospice Journey website, the Samvara Project offers another personal website called, What Matters Now, that provides free personal websites for people whose lives have been affected by serious illness or injury. The intention of that particular site is to “help people be surrounded by the love and support of family and friends, and have space for reflection when facing a life-changing situation.”
According to their site, the inspiration for, What Matters Now, began while the Hospice Journey website was being created. One of the team members became ill, requiring surgery, long-term hospital stays, and round-the-clock care from friends and family, and many months of painful recovery.
“Needless to say, the experience changed her life and ours dramatically,” writes the team. “We have used the lessons that she and her family and friends learned during that process to create What Matters Now to support anyone facing a serious illness or injury. Our goal for each personal Web site is to make the challenge of facing serious illness a little easier by simplifying communication and helping to coordinate support. Facing a serious illness can also inspire reflecting on one’s life and offer new perspectives. The Websites provide questions to help people make the most of this opportunity for reflection and growth.”
For more information on the first step in getting started with hospice, click here.
Additional links:
http://www.whatmattersnow.org/?p=nationalhospicefoundation&p=nationalhospicefoundation
http://www.whatmattersnow.org/visit/ben/lendahand
http://www.hospicejourney.org/about.jsp
