Frans Hals, Young Man with a Skull
Picture this: A few dozen individuals of varying ages and cultural backgrounds are sitting under the canopy in a park in the late afternoon breeze. They’re divided informally, six to eight at each table. They’ve pinned a nametag to their shirts, jotted their contact information on a sign-in sheet and helped themselves to refreshments. A box of tissue graces each table. Some of them notice it; others wonder what’s going to happen next. Someone stands up and greets everyone, introducing herself and laying out the simple ground rules of engagement. Then she asks: Why are you here? People look across the table at each other and start talking.
At the close of each Death Café, locally hosted by Circle of Friends for the Dying, a nonprofit chartered to create a home for terminally ill persons in Ulster County, attendees are invited to say one word that describes their experience of the hour-and-a-half-long encounter. People offer things like: inspiration, relief, informative, joyful, curious, peace, community, mirth. These are not terms normally associated with talk about dying, which reveals a surprising result of the casual nature of a Death Café. The setting makes for a safe space in which people feel comfortable enough to look at the giant elephant in the room — mortality. And opening up in candid conversation over cups of coffee and tea and something sweet to eat becomes a vivid exploration of living.
How do we hold ourselves in the face of death? Fear of the great unknown subsides a bit as the person sitting next to you tells the story of her mother’s gentle passing, or the man at the end of the table wonders out loud if his beliefs in an afterlife will pan out. Someone else wants to talk about the logistics of dealing with funeral services, and another member of the group shares her experience with the medical establishment that pushed to keep her father alive despite his advanced directives against such measures. How we live our lives around this inevitable occurrence shapes the quality of both life and death, and talking about it all seems to help.
Death Café recommends an open agenda, allowing for anyone to express their concerns and relate their stories around the subject of dying, with strong suggestions that organizers and participants avoid proselytizing a particular belief system or using the forum for profit in any way. Occasionally, a brief talk about a particular subject — green burial or how to broach the concept of death with children, for example — may be given, but most often is not, allowing attendees more time to deal with their own ideas and feelings.
Circle of Friends for the Dying’s mission is to serve dying individuals who want to stay in a home-like environment during their last couple of months. The group sees the Death Café events as a way to encourage frank discussion about a subject often avoided.
Hospice services can only attend someone in their own home if there is already round-the-clock care for that person. Without such care, people are forced to move to nursing homes at a time when a less institutional atmosphere would ease their transition.
Homes for the Dying are viable options, as Circle of Friends for the Dying’s founder Elise Lark discovered in her doctorate research. She visited homes in upstate New York in the Rochester area, finding them to be potentially doable here. Each home opens its doors to two residents at a time, offering rooms for families to be with their dying relatives in comfort and quiet. Homes are staffed by paid directors and volunteer caregivers who coordinate with hospice services to ensure each resident’s best care. There is never any charge to the dying person or their family. Homes are fully funded through gifts, grants and community support.
Circle of Friends for the Dying’s board of directors is currently involved in fundraising and the acquisition of a house or property that could be retrofitted to accommodate two residents and a staff person. A PowerPoint presentation is available to businesses and organizations in the greater community to become more familiar with the Home for the Dying model, as well as reasons for its existence. Lark said the group is seeking two additional board members with fundraising experience to assist in the project.
At a recent gathering, Bob Griss, director of health care policy at the Institute of Social Medicine & Community Health, noted the broad spectrum of concerns and ideas exchanged at just one table: the celebratory aspects of death as an important part of living, the lack of frank talk about death in most medical and rehab facilities, ways to approach a loved one’s death, death as an opportunity to take care of unfinished business, face impermanence, let go with dignity. He heard people’s fears of not dying in the way they would choose, if they could do so. He listen to an emerging resolve for people to take matters into their own hands while they were able to, giving rise to discussions about medical issues, like DNR directives and organ donation, all serving to make people aware that they do have choices and rights.
The group has hosted Death Cafés in restaurants, community centers, libraries and ecumenical facilities around the region, and on Tuesday, July 22, the eleventh Death Café will be held at the Saugerties Library from 7 to 9 p.m. There is no charge, but donations to help pay for refreshments are always appreciated. As CFD co-founder Barbara Sarah likes to say, we’re all terminal cases. Let’s make it easier on ourselves. Let’s talk about it.