Interview with Patricia Loder
Patricia Loder
Executive Director, TCF/USA
Q. In a recent article you wrote for HFA’s new Child Loss issue of “Journeys”, you speak very openly about your own experience with grief following the tragic deaths of your daughter Stephanie and your son Stephen. Can you talk a little about your own journey from being a grieving parent to becoming the Executive Director of The Compassionate Friends (TCF)?
A.Every grief journey is different, but certainly I went through many of the emotions that other grieving parents go through. After the realization that I was the only one who had survived, I knew that I could curl up in a ball and just cry all day or I could go and help others, and in doing so, honor my childrens’ memory.
Going from being a grieving parent to working as the Executive Director of a group like TCF is not an unusual model. There is so much you learn about yourself on this journey, that you often hope to be able to share what you’ve learned to help others.
Q. What are some lessons that you have learned from other grieving parents through TCF?
A. I am learning every day; the people involved with TCF continue to teach me how to cope and deal with tragedy. Everyone’s grief is unique, but in TCF the shared loss really can make a difference, because we can relate.
Q. That concept of “shared loss” is something that has come up in discussions around HFA’s upcoming teleconference on diversity and end-of-life care. Many support groups are delineated by what you described—the “shared loss.” From your experience, why might it be important for grievers to find support from others who have experienced a similar type of loss—which might even supersede other issues of culture or shared background?
A. Our first experience after our children died was to attend a general bereavement group. There were people there who had lost spouses, grandparents, even pets. When my husband and I sat in this group, we were the only grieving parents, and we had lost two children. Without wanting to, we became the focus of that group. And even though I know it happened out of concern, it quickly became uncomfortable; we felt like outcasts.
One person in the group actually said, “If you can survive the loss of two kids, I can certainly survive my loss!” But I was nobody’s role model; I struggled to get out of bed and put on two matching shoes each morning. I know that she wasn’t trying to be mean or hurtful, but sometimes people just don’t know what to say.
Finding a Compassionate Friends chapter allowed me to be with others who had experienced a similar loss; there was a sense of comfort and relief to be with others who really understood what we had been through.
Q. How does the work of The Compassionate Friends serve to help in these situations?
A. I believe that the bereaved need to do more to educate people as to what it is that the bereaved need. Often when people are faced with a grieving individual they feel it is necessary “to fill the room with words,” but that’s not necessary. Walking along side, sitting with, and just being there for someone in grief is important. People need to get comfortable with silence. One of the goals of TCF is to teach what helps, and what has the potential to hurt.
We work with a wide range of groups—first responders, emergency personnel, schools and employers. I find that groups are very open to learning more. I remember one experience working with firefighters, many of whom had experienced very difficult situations with families. These men and women needed to tell their stories and have someone listen; it was a very emotional experience to listen to them. We were able to help them decide the “right” words for them to use, and what to expect when dealing with a newly bereaved person.
Q. Another group that has to often break bad news to parents is physicians. A recent study showed that there is a wide gap of communication and understanding between what parents of seriously ill or dying children hear about a prognosis and the information that the physician is actually giving. What advice would you have in that situation?
A. I have had similar experiences working with physicians. Physicians need to learn to be patient and lead parents through these difficult conversations. Even if it’s difficult to find the time, doctors may need to take more time in explaining the prognosis and the options, and parents may need to hear the information more than once.
Q. Many readers may know that TCF offers grief support for parents whose young children have died, but some may not be aware that your organization’s mission includes reaching out to parents, siblings, and grandparents, including parents whose adult children have died. What is the importance of including these other groups?
A. TCF was actually started in the U.K. When it started in the U.S., the groups were specifically for parents. But then the realization hit that the death of a child happens to everyone in a family. The surviving children are often what we call “forgotten mourners.” And not only does a grandparent grieve the death of a grandchild, but they have to watch their own child in overwhelming grief and pain.
TCF involves a range of people and losses, from those who have experienced a miscarriage to parents whose adult child has died. Most of our more than 600 chapters have members with a wide range of these experiences.
Q. How do these more than 600 chapters operate?
A. Our office serves as the umbrella organization. Each TCF chapter is run by bereaved people, based on a peer support model. We generally recommend that at least three people, and preferably couples, help in the start-up of a new chapter. Many bereavement support groups can be very female-focused; involving both partners helps to encourage men to attend.
We also require that those who lead the chapters are at least 18 months along in their grief journey. Before starting a chapter to help others, it’s important that these parents have experienced their “firsts”—the first birthday after the death of their child, the first holiday, the first death anniversary. These events can be very traumatic for newly bereaved parents, and their energy should be focused on getting through those times. Some roles of our national organization include teaching chapters ways to reach out into their communities to newly bereaved parents and grandparents. We also help them learn how to reach out to professionals for referrals.
Q. What role does the Internet play in helping to provide this type of support?
A. This is not the world we lived in when Stephen and Stephanie died. TCF offers online chat support every night, and has trained moderators for these chats. These chats have grown so much, we often have more than one moderator working in the room at a time. The Internet does allow people to connect in ways that were not possible before. In fact, a ceremony that began over the Internet is now our biggest annual event.
Q. That would be the 2008 Annual Worldwide Candle Lighting Service, scheduled for December 14. Can you tell me more about the event and its significance to grieving parents and families?
A. The Worldwide Candle Lighting Service is now in its 12th year. This event started as a small Internet observance for grieving parents who had met online. After the first year, they approached TCF and we were happy to sponsor it.
We ask that, on the second Sunday in December, this year December 14, that people light a candle for one hour at 7pm in the time zone where they live. People can do this as individuals, or as part of a community service; there will be more than 500 services listed on our website for that day. The idea is that there will be a steady glow of candlelight across the world, remembering and honoring children who have died. On our website (www.thecompassionatefriends.org ) there will be a Remembrance book online for people to post messages, and we also have a listing of public services.
The day has special meaning for me personally. It has been 18 years since my children died, but I still set aside this day each year. The Candle Lighting service gives me the opportunity to slow down in this busy season and take some time for them to be remembered. For a bereaved parent, it is very powerful to know that our children are being thought of with love across our community and around the world.
TCF Executive Director Patricia Loder has been involved with The Compassionate Friends for many years. Driving home on the first day of spring, 1991 from a day spent helping her father, Pat and her 8-year-old Stephanie and 5-year-old Stephen never made it to their destination as her car was struck by a speeding sport motorcyclist. Though Pat survived, her children did not. Having experienced the death of her older brother from cancer only six months before the death of her children, Pat was unprepared for the grief struggle that would reshape her life. She found TCF a few months later, and received so much help and support, she went on to co-found a TCF chapter in 1993 nearer to her home, and later served as regional coordinator for Michigan.
On a national level, she became involved as co-editor of the National Newsletter and the sibling newsletter, STAGES. Pat and her husband Wayne became co-founding editors of TCF’s national magazine, We Need Not Walk Alone. Pat played a dual role as she was hired as development director of The Compassionate Friends in 1998. Two years later she was asked to fill the vacant executive director position. Pat spearheaded the first TCF Walk to Remember which has become a popular annual event at each national conference. She has written many stories regarding grief and bereavement following the death of a child and is a frequent workshop presenter and grief speaker. As the face of TCF/USA, she has led the organization through many positive changes as it has continued to grow and move forward in its mission. Pat has a background in government and owned a municipal consulting service for many years.
