About eHope | Peeps We Serve

A NEED FOR INTIMATE CARE

Mark and Nancy Angelos first approached eHope in March of 2007, in need of a logistical framework to help coordinate Mark's care.  Having been diagnosed with ALS in 2004, Mark was tied to a ventilator, which allowed him to continue breathing.

Having plenty of friends, Mark and Nancy really weren't looking for additional helpers, simply a consistent means to orchestrate and communicate Mark's care needs.  A patient on a ventilator requires 24 x 7 care, with an ability to respond instantly in the event of an emergency. For months Nancy had attempted to care for Mark on her own, relying on the skills that she had learned as a nurse, but found that as time wore on, her energy level began to steadily diminish.  She needed to work 3 evenings a week not only to keep their medical benefits current, but also to create some time away to clear her mind and re-focus. A WORKABLE SOLUTION eHope moved in to provide structure to  Mark and Nancy's caring community by first traveling to Rockland to meet with them in person to gain a clear understanding of their needs.  eHope's high-touch model of community based care helped to identify a trained facilitator whose job was to  assist Mark and Nancy with training a rotating team of leaders from their circle of friends and neighbors. After conducting an on-site launch meeting, where a circle of 25 of Mark & Nancy's peeps (short for people)) gathered in a room to discuss how to work as an integrated team, and receive training on eHope's community-based care model, their caring community took flight. Through the group’s shared use of a private eHope website, and periodic community gatherings (potlucks, yard cleanup days etc.) a strong team chemistry emerged, allowing for a fully integrated system of care for Mark and Nancy, with all of their peeps maintaining a healthy balance in their own busy lives. Notably, a core group of a dozen peeps received hands- on ventilator training from Mark & Nancy's circle of professional medical care providers.  This formal training allowed them to receive an "MSQ" (Mark Solo Qualified) designator, which allowed them to stand in for Nancy during her time outside the home for work and respite. In a time of crisis, our prevailing tendency in our entitlement driven society is to seek and demand a governmental or institutional solution to that which only we can collectively provide - community-based care.  In generations past, we relied simply on the good neighbor who stepped up without forethought to provide help in a time of need.   Mark and Nancy's community more than filled that space. QUALITY LIVING Even on a ventilator, Mark's life was not confined to a bed.  He and Nancy along with members of their eHope community traveled to nights out on the town for dinner or concerts, or to area ALS support group meetings to meet with other eHope families, relying on a handicapped-accessible van, eye guided computer technology, and battery powered breathing equipment.  In short, Mark lived life to its fullest. After 2 full years of quality living, surrounded by an integrated community of caring peeps, Mark made the poignant decision to shut down  his ventilator and allow his life to take it's natural course.  He walked out this brave decision without wavering, spending the final month of his life fully connecting with and communicating with his peeps from around the country. A COMMUNITY GRIEVES AS "ONE" On the night of September 15, 2008, 40 peeps gathered in the Angelos' Rockland home to celebrate Mark's final birthday and a life well lived.  There was live music, laughter, and tears as a community of caring friends came together to comfort both the family and each other. On the following day, September 16, 2008 - Mark's 55th birthday - under competent hospice supervision, Mark died peacefully, surrounded by his wife Nancy, son David and daughter Megan.  Across town in the home of long-time friends Phil and Cyndi Clayton, Mark's community of peeps gathered in prayerful vigil as Mark's earthly life came to an graceful end. CARE NOT ONLY DEFINED BY ILLNESS Rather than resorting to an all-too-common tendency to retreat to a place of solitude to lick our individual wounds following a memorial service, Mark's community of friends have remained in constant touch, both in person and through their eHope online community. Gretchen and KC, a young couple who are long-time members of Mark's inner circle of peeps, gave birth to twins last month.   The collective care previously focused on Mark has shifted towards providing meals and running errands for this brand new Rockland family.  Mark's daughter Megan is expecting her first child in July 2009. Mark's community of care has come full circle, now embracing, celebrating and providing care for the gift of life. A LIVING SCRAPBOOK Mark and Nancy allowed eHope to compile an extensive video biography of Mark's life during the month leading up to his death.  In excess of 4 hours of video now streams through their eHope site which has become a living scrapbook consisting of photo libraries depicting yard cleanups and potlucks along with video interviews of family friends. The Angelos community has allowed us to share some of their video content here on our public web site in the hope of  broadening the awareness of eHope's services and the importance that community-based care plays in each of our lives. Introducing Mark & Nancy This 14 minute video clip introduces you to Mark and Nancy as they share how they met and how their relationship evolved. The Importance of Community This 8 minute video clip is of Mark and Nancy discussing the importance of peeps in their collective circle of care. Peeps Helping Peeps This 14 minute video clip is of Wes, a long time friend of Mark's, filling in for Nancy, feeding Mark and providing ventilator support, while sharing his thoughts on providing intimate care and companionship for his friend. The Value of eHope   This 2 minute video clip is Mark & Nancy's testimonial to eHope's version of community-based care which ultimately sustained them through Mark's final years of life. Steak Night A 3 minute piece of video compellingly produced by an Angelos peep, as a video class project at a local community college.