Still Alice

A Conversation with Betsy Trapasso

I have long been waiting for the right time to introduce you to Betsy Trapasso, an End of Life guide, who has devoted her life's work to helping people and their families through the dying process. Her uniquely gifted spirit guides people to ensure that they have, what she calls, a peaceful death. This month I had the chance to talk with her about her newly launched organization called Death and the Arts, which is committed to creating death positive cultures by bringing artists together from all over the world to explore the topic of death. Read on below for our full conversation.


After receiving her Masters in Social Work from the University of Southern California in 1993, BETSY TRAPASSO began working as a hospice social worker in Los Angeles. She fell in love with this work and knew that she had found her calling. 

The first hospice facility in the US is in her hometown of Branford, Connecticut. Betsy's grandfather and mayor of Branford, John Sliney, fought to have Connecticut Hospice built there. He believed that the dying deserve to be treated with dignity and compassion. Betsy is carrying on his vision by working to change how we view and do death in the United States. In addition to her advocacy work, she now works as an End of Life Guide and has helped hundreds of people and families through the dying process. She has studied Thai massage, yoga, essential oils and meditation, which influence her work. Betsy is also the hostess of Death Cafe Los Angeles.

Betsy is the Founder of Death and the Arts, devoted to creating death positive cultures through the arts by bringing artists together from all over the world to explore the topic of death. She has been featured in the Los Angeles Times, USA Today, MSN, and Forbes. As a speaker at TEDxMalibu her talk was Death and the Desire for a Hollywood Ending.

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Karin: Can you start by describing the work that you do and where it began?

Betsy: I guess it began being a social hospice worker over 20 years ago. 20 years ago, wow! Of just starting to do hospice social work in Los Angeles and falling in love with it and finding it was my calling and my passion. I was able to go into complete strangers' homes and help them to have a good death and to help their families. Usually when people are in crisis they don't know what to do, and I could go in and help them really make sense of it - and help the dying person die without fear and get them to kind of accept what was happening, because no one really knew what to do. And even today people still don't know. There are more resources but people are just lost. And it was such an honor to go in and help people die.

Why do you believe people are afraid of death?

I think people are afraid because we just don't talk about it. If you don't talk about something, you don't know about it. You don't know what it is.

What do people discover when they talk about it?

What their true feelings are, and what their fears are. I find when you talk about things, you can actually really discover what you're thinking. So sitting there and asking people point blank, “What do you think... is there an afterlife? Where do you think you're going? What is your fear? What are your regrets? Who do you want to talk to, is there anyone you want to make things right with?”

For so many people, their biggest fear is that they will be forgotten, and their life didn't mean anything. Nowadays, you can leave things. When I started there wasn't a computer, there wasn't the Internet. There were just photos, and not even digital photos yet. People write stories now; they can do so many things. They like to be able to hear, “You did matter.” You bring the family in, bring their friends in. Have people tell them, “This is what you meant to me.” You help them figure out what they got out of this life, and what they did right and what they feel they did wrong. If they believe they're coming back, what they can do next. It's just endless.

Is this similar to what the Death Cafés are about?

Death Café is different. Death Café is not a support group or a therapy group. It's just a place for people to come together to talk about whatever they want to talk about. There's no topic, no speaker. I just gather 10 people together for about three hours. I just say 'I'm the hostess', and I sit back and let everybody just talk. Maybe someone in their family died, maybe a friend died, and they can't talk about it anywhere with anybody.

My big thing is that I'm not an expert, this is not for me to teach you anything. It's just a time for you guys to get together and talk about whatever is meaningful to you. I don't even say, “What brought you here?” The first half hour people are just getting the food and getting to know each other. We don't even sit down right away and talk. So people are already getting to know each other like as if you're at a party. So it doesn't feel like you're coming and sitting right down in a group of complete strangers.

The three tenets of it are: it's not-for-profit, everything is confidential, and we call it just “be nice to each other.” Just don't steer anybody towards what you believe, everyone be supportive of each other, and that's it. So it's actually really simple.

You can talk about death, life, whatever is meaningful to you. Some want to talk about advance directives or what am I going to do when I'm in the hospital? Or how have I lived my life? What do I want to do with my life, what's really motivating me? Some young moms say, 'Oh I have a baby now and I'm really thinking about death. I've never really thought about it before.' So that's what I'm saying, it can be anything and everything. I never know, I'm always surprised. No two have ever been alike.

How did your work evolve after your hospice work?

What I learned through doing my hospice work is that I'm always very drawn to the spiritual part of it. As a hospice social worker, you're just in that little box doing social work, which is wonderful because you help people with all their issues. But I also through the years have my guru, my meditation, chanting, essential oils, Thai massage, and all these things I've learned through the years that would be helpful to the family, because you're not just working with the dying person, you're working with the family, too. And that's a whole other issue - the caregivers - and supporting them. So it's just putting a vision together of what would work best for the dying and the family.

And then also, the advocacy: just trying to change how we deal with the dying and the caretakers, and everything that's happening in the country, because there's 78 million baby boomers and people are getting older. There are more people with dementia and Alzheimer's. There are not enough people to take care of the dying. People are having to leave their jobs and be caretakers. So what do families do? People are getting involved in it and realizing that there's a crisis. So there are movements everywhere. I love all of them and want to be a part of all of them!

Tell me about your new organization Death and the Arts.

Yeah, I'm so excited. My whole interest in End of Life is: I want people not to be afraid of death. That's what I discovered when I was a hospice social worker. People always said, “God, if I had known about this, talked about it earlier, I wouldn't have these regrets” or “I would have done my life differently, I would have made different choices, I would have enjoyed things.” I just found that over and over and over. People just weren't happy with their lives. And it wasn't until I came in at the end that they really realized it.

So my whole goal is to get people not to have regrets, to live their life now how they want to live it. And the only way to do that is to get people thinking about death, dying and end of life, but they're afraid. So then I saw that movies about end of life were very popular, songs about death and dying, theater and plays, everything. People will go to those things. People will listen to songs. People will go see Julianne Moore in Still Alice about Alzheimer's. She's a young person who got Alzheimer's. That's devastating. There is early onset. They probably wouldn't look at a real person in real life, but it was easier to look at Julianne Moore do it. Or the Stephen Hawking movie about ALS. You know, that actor won best actor. So it's the way people can talk about it without feeling so vulnerable.

So that's where I came up with Death and the Arts. I want to connect people all over the world to each other and do projects. That's what always fascinated me, because in Los Angeles I was exposed to different cultures and how people do death. Like, wow, if we all knew what each other does, then maybe it'd be fascinating to talk about it in a way that's not threatening. So I want to get musicians from all over the world - different countries - to write a song about death. Or the photographers could take picture about what death represents to them. It doesn't have to be a dying person. Just put projects together so everyone can communicate all over the world about it, which is kind of my dream. Because I love learning. I think that people could look at it and not be afraid and start talking about it in that way.

How can people get involved?

If anyone is an artist or wants to contribute something, I have a Facebook page. They can post their own art on there. I want people to start posting things up there now, so people can see what they're doing, and they can write a little thing about it. I'll put projects together, but it's just a place to share.

What's the coolest thing you've discovered in terms of how a culture deals with death, or the ritual around it? Is there anything that was particularly eye opening for you?

I love Day of the Dead. I went down to Mexico in 1995 at the same time I was doing hospice social work. I saw my first Day of the Dead festivals and I was like, “Ahhh.” I fell completely in love with it. They actually go to the cemeteries and honor the dead, so there are parties there. They bring the flowers, they bring the food, they make altars to honor their people. There were plays in Mexico City. There were fireworks. It just blew me away. I loved it. That's my favorite.

It sounds very celebratory.

It's so celebratory, and they're not afraid.

 

To learn more about Betsy Trapasso, visit betsytrapasso.com

To joint the Death and the Arts community, visit the Facebook or Twitter page, or join Betsy's e-list for future updates. If you'd like to be a host of a death cafe, see the guidelines.

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