Lili Carroll is a bereavement coordinator at Visiting Nurse and Hospice Home in Fort Wayne, Indiana. She was born in Cuba, grew up in Europe, the United States, and South America, and graduated with a degree in psychology from the Pontifical Catholic University of Campinas in Brazil. She lived with her husband Jim in England for several years before returning with him to the United States, where he died unexpectedly. Her hospice work entails a dual emphasis: working with the bereaved and reaching out to the Latino community. Lili was instrumental in the recent translation of Willowgreen’s book One You Love Has Died into Spanish. It’s been published as Un Ser Amado a Fallecido. Our interview started with that experience.
Jim: As you helped us be sure that the Spanish translation accurately reflected the English original, it became clear that you’re knowledgeable about grief and passionate about working with the bereaved. Where does that come from?
Lili: Life led me in that direction, unknowingly. Following the sudden death of my young husband in 1995, people would say to me, “You’ve been through serious loss. So-and-so has just suffered the death of a loved one. Would you talk with them?” So I did. Then I just kept doing it more and more.
Jim: You have a background in psychology. Do you see yourself as a therapist doing this work?
Lili: No, not at all. I do not perceive grief as a mental health issue that needs to be treated or cured. Grief is different-it’s a human experience. It’s about being present, honoring the uniqueness of each person’s grief experience. In that process, within their own time frame, the bereaved begin to find hope again, to love again, and to live on without the deceased one in their lives.
Jim: As passionate as you are about working with the bereaved, you’re equally passionate about working with Latinos. Why?
Lili: Well, I’m a Latina myself, born in Cuba. While my family moved to France when the Cuban Revolution occurred, Spanish was always spoken at home. I carry the Latino culture inside me. In addition, I have lived as a foreigner in other countries more than once. I can identify with what Latinos are going through here in the U.S.
Jim: What can you share about your experiences of working with bereaved Latinos?
Lili: It’s all about trust. If they don’t feel they can trust you, they won’t openly share their story and honestly talk about their experience.
Jim: Personally, how do you gain that trust?
Lili: I speak their language. I spend time with one family, which leads to being with another family, then two more. I never go in as a grief expert. I go in as someone who is willing and prepared to simply be with them, to walk with them as they grieve. I listen a lot. I educate them a little about what I see happening, what I’ve seen in others. And I ask them to tell me their story in as much detail as they want.
Jim: Then what happens?
Lili: Usually they tell me! It’s amazing, really-as we spend time together you almost see them change physically. They realize they’re not going crazy. They see that what they’re feeling makes sense. They begin to understand how grief works.
Jim: Do you see differences between Anglos and Latinos as they grieve?
Lili: First I’d say, no, not really. We’re all the same. Grief is grief. It’s a universal phenomenon, whatever our heritage. That said, I’m aware of some subtle shadings as I work with both cultures. Self-help books are common in the so-called modern Western world. And there isn’t much of a stigma to reaching out to others when you hurt. For those who speak mainly Spanish, there isn’t much available in their language about grief. Also, for many Latinos, their stance is “we take care of our own.” I’ve heard this saying several times: “We deal with our emotions within the four walls of our home.”
Jim: Any other differences?
Lili: Many, though not all, Latinos share an understanding about afterlife. They believe the deceased leave their body behind and their spirit goes on to a better place. This strong belief is a part of their reconciling with their grief.
Jim: Have you experienced any difficulties in this work?
Lili: Trust, as I mentioned, is a real issue. As a minority culture, they’re not always treated with acceptance and respect. So trust comes slowly, and sometimes not at all. Language can be a barrier. Some English words don’t have a Spanish equivalent. For example, there’s no Spanish word for “palliative.” And that’s an important idea for us in hospice. Then there’s the issue of cohesion. There is not really a “Latino community”-there are “Latino communities.” There are significant differences-in culture, in beliefs, even in language-among, say, those with roots in Mexico and Guatemala and Venezuela and Chile, to name just a few. You have to listen carefully to the words they use, and if you don’t understand something, ask.
Jim: Based on your experiences as a Latina, a widowed person, and a bereavement coordinator among Latinos, what advice do you have for someone who wants to do this sort of work in their own community?
Lili: First, be open. Always be willing to learn. Don’t expect that you know another’s grief. Second, listen. Listen a lot. Listen carefully. Third, don’t expect trust automatically. Expect to earn it. Fourth, appreciate the wide diversity in the Latino world and keep learning all you can about it. And fifth, be sure to have some materials available for people in their maternal language. It’s very important to be able to express oneself in that language when one is experiencing a trauma, and death is often a trauma. The same holds true for having access to helpful reading materials that can bring some light and peace in such a time. So remember that every action you take, every word you use is either opening a door or closing a door. Keep opening as many doors as possible. And here’s a simple suggestion: use the word Latino rather than Hispanic. The word Hispanic was created by the U.S. Census Bureau in the 1970’s. I think most Spanish-speaking people from Latin America prefer the self-designation of Latino. But if there is any question, just ask. It will be a small step toward gaining trust.
Jim: Thank you for sharing your wisdom.
Lili: De nada. You’re welcome.
A few weeks ago findings were released from the latest large project conducted by researchers at Ohio State University and the National Institute on Aging. Previous studies, spanning three decades, had examined the effects of stress on divorced spouses, widows, and widowers, among others. The newest study concentrated on spouses and children who were caring for a family member with Alzheimer’s disease.
Since “The Thoughtful Caregiver” went on-line in May, there have been more than 7,000 visitors to its various posts, which total 66 as of today. Each post is built around a particular issue that relates to being a family caregiver, written to support and validate that important, often difficult experience. Jim’s photography is featured in each entry. All entries can be downloaded and printed with ease, as well as shared with others. There are also five inspirational videos that can be watched as many times as desired.
Sidney Winawer, M.D. specializes
in gastrointestinal cancers
at Sloan-Kettering Cancer Center.
as she explored all possibilities for healing.
