Bright yellow daffodils emerge from the yard, filled with the hope and promise of new growth and the warmth of Spring.
Four years ago this month, March 2018, Erik and Gabriel attended a workshop on Mindful Caregiving with the Zen Hospice Project in San Francisco and had the chance to briefly tour their Guest House for the terminally ill.
Upon their return to Asheville, the idea of a physical place, where end of life care could occur, in a neighborhood, at home, with support, felt more attainable, having just seen the example of a beautiful Victorian hospice house in a bustling urban setting.
While finding and securing a private home to live in, with all of the amenities and assets that would make it conducive to sharing with and connecting to community, progressed and finalized quickly for them, the overarching purpose and function of that space continues to evolve.
Early on in their research, Erik and Gabriel recognized that at this time they did not want to pursue licensure that would recreate existing forms of care. For example, the Zen Hospice Project Guest House by the time of their visit was a fully licensed care facility with 24-hour staff that cared for up to 6 residents at a time. They also personally did not want to recreate or use the existing family care home model, which also involves extensive licensure and staffing requirements.
So, if they weren’t trying to start those things, which are admittedly noble and needed pursuits in themselves, then what would they create?
Their ideas and intentions focused and landed on a seemingly novel concept of shared housing for terminally ill people and their caregivers. They weren’t strangers to shared housing, having had housemates throughout the years. During their research, they also visited a shared multi-generational housing model in Chicago. And personally, they each witnessed in others the oftentimes lonely and isolating work that is being a primary caregiver to someone at the end of life. By merging the two, this project could address the realities of the cost and work of living in a big house and maintaining a food-producing garden (besides also addressing affordable housing in general), and providing the connection to a community for those at the end of life. They also sought out existing and fledgling community groups to use their home for meeting space, including Death Doula groups, grief circles, and end of life care interest groups and workshops, and held monthly potlucks to meet and connect with people and continue the conversation.
The next year, March 2019, 3 years ago this month, a couple approached who would become housemates, and unofficially officially inaugurated the “shared housing at the end of life” idea into reality. (See the website, which includes an archive of newsletters, to catch up!) While Erik and Gabriel didn’t believe they were “ready” to start the project, enough of the people and resources were in place to prove to them that their idea was viable and meaningful. Yvette was able to stay at home with her wife as she had wished, enrolled in home hospice, and had a home funeral. Eve and Yvette will forever hold a special place.
Later that year, having seen that the idea could really work in practice, a board of directors was assembled and filed for and received 501c3 status as Holding Space for Living and Dying, Inc., the legal entity in which the idea could live and develop.
Then March 2020 hit. The idea paused, and while some approached, no new housemates at the end of life ended up joining the household. Formerly monthly potlucks and gatherings were indefinitely on hold. They only began again last summer, when it felt okay to take a collective deep breath together. Navigating recurrent waves of a pandemic has certainly complicated things.
In the last 6 months, it has started to feel safer to cautiously open up their home again. In September-October a group of young Americorps volunteers stayed for three weeks, to lay the groundwork to improve the infrastructure at the home to be able to offer universally accessible and usable spaces to future housemates and to the community. Most recently, the space was offered as a soft place to land for a group of displaced Afghan evacuees.
Now, another season of change, another promising Spring, approaches. Hopefully, this time better prepared for whatever curveballs might be lurking, with an openness and responsiveness to whatever may be.
In the mean time, during this season of resetting, the focus will be on clarifying and laying the physical and organizational groundwork to help these ideas flourish into existence with the next housemates and beyond.
Note: Ultimately, the Zen Hospice Project Guest House did end up closing in June 2018 due to funding issues related to being a type of medical care facility. That organization continues their work as the Zen Caregiving Project, offering classes to the public and training and providing volunteers to other area facilities. Read more about their story here.
