The most miserable people in the world are the people who are self-centered, who won’t do anything for anybody, except themselves. In contrast, the happiest people are the people who deliberately take on themselves the sorrows and troubles of others. Their hearts sing with a strange wild joy.
E. Stanley Jones
When I meet new people, the question about where we work often comes up. When I answer “I’m the bereavement coordinator for a hospice,” I get a lot of interesting reactions. Some people are taken aback, and some people want to know more. Hospice is something many people talk about in hushed tones, as if the very mention of the word means bad news, a death sentence. Hospice unfortunately is not always known for what it is, a great help to people in one of the most stressful times of life. When a terminally ill person is expected to live 6 months or less, and curative treatment is no longer an option, hospice can do a great deal of good. At this time, the focus of medical treatment can turn from cure to comfort.
Hospice care is done as a team approach. Patient care is done most often in homes but also in nursing homes and other settings. Nurses are experts at relieving pain and other symptoms, under supervision of the hospice physician. Chaplains provide spiritual and emotional support, and often help the family with funerals or memorial services. Social workers help families in a number of ways, helping with advanced directives, finding resources of various kinds, giving emotional support and counseling, helping with nursing home placement if needed, and giving information about funeral and burial options. Home health aides provide personal care when the patient can no longer care for him or herself. Volunteers visit patients in homes or nursing homes, sit with patients to give caregivers a break, help with administrative tasks, and can help with bereavement support. Hospices do not just serve the patient, they also support the family members through all parts of the process. Hospices are required to offer bereavement support for thirteen months after the patient dies. That’s where my position fits in.
Most bereavement coordinators are either chaplains or social workers, since hospices are required to have those professionals on staff. My background is in social work. Before I became the bereavement coordinator, I was the social worker with our children’s hospice and home health program, helped with the children's bereavement program, and visited occasional adult patients. I’d also been an intern with the agency when I was getting my master’s degree, and had helped the bereavement coordinator make calls. I was fortunate to be hired for his job when he transferred to our branch office that was closer to his home.
Visiting Nurse Association, or VNA, as best known in the community, is the oldest hospice in Texas, and one of the few nonprofits in the Dallas area. VNA was founded 75 years ago to provide nursing care for the poor, sick, disabled, and dying in the community. We provide a number of services that help people stay in their homes, including Meals on Wheels for Dallas County, home health, long term care, Eldercare, rehabilitative services , and hospice care. In the late 1970s, before the Medicare hospice benefit was approved by Congress, 26 hospices in the United States were chosen for a pilot program to help define what hospice should be and demonstrate its helpfulness. Our hospice was one of those chosen for the pilot program. We have a wonderful, experienced staff, which includes a chaplain who has been with us for over 25 years. VNA's website is http://www.vnatexas.org/ . We're planning a website expansion in a few months, and I hope we'll have a section with our bereavement activities at that time.
I provide bereavement support to the families of patients who have been on hospice, and also to others in the community. We provide support in a number of ways. Every family member on our mailing list receives letters with literature about grief and a quarterly bereavement newsletter, which I help write and edit. I also send other materials as requested, after I talk to the family members.
A large part of my time is spent on the phone making calls to family members of patients who have died, talking to them about how they are doing, and helping them with any questions about grief. I am part educator, mostly listener. I also get calls from people in the community who have had losses, and help them find support and resources. We call family members periodically through the year. After many of the calls, I send more information by mail or e-mail, including a list of grief websites, a grief bibliography, articles about specific kinds of losses, and information about my support groups and others in the community. Each loss and each person is unique. Some find most of the help they need by talking to other people. Others prefer gathering information, and may work through grief by doing things like journaling, self-expression in the arts, or getting online on discussion boards.
VNA has a number of meetings that I set up and help facilitate. All of our meetings are open to the community, not just to hospice families. We schedule 6 week grief support groups several times a year, some of which I lead and some which are led by another social worker. I hold two-hour seminars on grief and a holiday workshop. VNA also has a memorial service which includes music, readings, a short message, and a reflective time where the attendees can light a candle for their loved ones. Planning the service has been one of my duties. Some of the songs I've written have been used in the services, and were composed with those in mind.
One of my hospice's unique programs is a monthly bereavement luncheon. In the years we've been holding these, I've had a lot of support from sponsors in the community, and have been able to hold luncheons at no cost to the attendees, with speakers about some aspect of the grief process. We've had professionals from a number of the groups offering service to the bereaved in the community, and talented lay speakers with life lessons to share. I have learned from each one. We also hold a quarterly luncheon in a Dallas suburb. When I took my position, organizing events was the most stressful part of my job, because I'm something of an introvert. Now I really enjoy the meetings, and especially the luncheons. They can get quite big. Sometimes 75 or 80 people attend.
People often wonder if it's hard to work with bereaved people. I find it's actually quite rewarding to have so many significant conversations with people about those they have loved and lost. At first, when I worked with hospice patients in internships and as a new social worker, I found the work to be partly rewarding and partly heartbreaking. I asked one of the nurses how she could keep doing such difficult work for so long. She told me that she felt like she'd been given a gift, an ability to provide care that was so needed and so significant. She knew she could help people at an incredibly difficult time, and make it easier for them. Not everyone can stay calm in a crisis, but hospice staff learn how to handle just about everything. And in the same way, I've learned that my personal and professional experience helps me to walk with others at a time when a listening ear, a calm voice, and a bit of information can be a tremendous help. I am grateful to be doing this work.