Tag Archive | Charleston

In Honor of…Thoughts on bereavement from someone who knows

img_0775_2I have probably sat with a hundred or so bereaved people at this point.  I have listened to their stories, cried with them, opened my heart to them, and been a compassionate witness to their suffering because I know from my own experience that whatever the circumstances of the death, the grief in losing a loved one is deep, and profound, and can shake the very core of one’s being. I’m posting this Q&A about bereavement on my blog to honor those who lost their lives in a historic Charleston, SC, church last week in just the latest mass shooting in America, this one sadly a reflection not only of the disastrous stranglehold guns have in this country but of our continuing legacy of racism. I’m also posting it in honor of the wonderful Patty Donovan-Duff, who in 1995 founded the Bereavement Center of Westchester and the Tree House, a wonderful program for bereaved children and their parents where I have had the honor to be involved for a number of years, running the parents group under Patty’s gentle and expert oversight.  Patty is retiring this year and the outpouring of love for her and admiration for what she has done in creating these wonderful programs was truly something to behold.  Her thoughts on bereavement from this 2008 interview are worth reading.  Here’s the link to the full article: http://www.insighttrails.com/blog/2008/03/qa-patricia-don.html

Q&A: Patricia Donovan-Duff, Director, Bereavement Center of Westchester
By Jon Berry

A GRIEVING HUSBAND LOOPS THROUGH THE CEMETERY on his daily run to visit his wife’s grave. A grandfather who had a decades-long romance with his wife finds after her death that he can love again. A child decorates a pillow commemorating his father with his dad’s beloved silk neckties.

Patricia Donovan-Duff, the founding director of the Bereavement Center of Westchester, in Tuckahoe, NY, has seen people express grief and healing in many ways. Her response is always the same: It’s all OK. There is no one way to mourn.

Since opening in 1995, the Bereavement Center has provided a safe place for thousands of people to talk about the death of a loved one. They come for eight-week groups for children and their families at the Tree House, the center’s children’s program. They come for groups for adults mourning the loss of children, spouses, parents, or siblings, and for individual counseling. The non-profit organization also offers educational and on-site support programs for schools and communities.

Donovan-Duff describes it as sacred work. It is done by a staff of social workers and nurses complemented by 70-plus volunteer facilitators trained by the center.   The main requirement, she says, is to be a good listener.

A registered nurse, Donovan-Duff previously was bereavement coordinator for the Phelps Hospital Hospice Program in Sleepy Hollow, NY. She is a founding board member of the National Alliance for Grieving Children, an organization for the more than 300 grief-support programs. The Bereavement Center is a program of Lawrence Community Health Services, which also operates Jansen Hospice & Palliative Care and Lawrence Home Care.

I talked with Donovan-Duff about the grief process – a topic that is still relatively new in our culture – and how she came to this calling.

QUESTION: When the Bereavement Center was started, there weren’t many programs like it. Did you have a model?

DONOVAN-DUFF: The Dougy Center, in Portland, Oregon. It was started 25 years ago by a nurse working on a pediatric oncology unit. She noticed that kids would come in saying, “What happened to Joey? He isn’t here.” Nobody would tell them that the child had died. They were afraid the kids would be scared that they would die. But guess what? The kids were already afraid. So, the nurse’s approach was, “Let’s talk with them.”

Q: It’s remarkable that this field has grown from that one center in Portland to more than 300 today.

A: It’s a movement.

Q: What is behind it?

A: Elizabeth Kubler-Ross had a great deal to do with it. In her book On Death and Dying, she wrote about the stages of dying, which she later changed to phases – coming to terms with death is not a linear process. When I started in hospice work 24 years ago, it was very hard to talk with doctors about death and dying. Today people use words like “die,” and talk about the needs of dying people, like the need to not be in pain and not be alone. Hospice opened that conversation up. The grief movement, I think, came out of the hospice movement.

If you talk with someone who went through a death in the family as a child 25-30 years ago, they remember pictures being taken out of the room. The person’s name wasn’t spoken. It was like nothing had happened. We see remnants when our volunteers come in to take training and talk about their experiences. They’ll say nobody ever talked with them. Some weren’t allowed to go to the funeral.

I think what we do is a very big wellness program. The message is that grief is the natural and normal reaction to a death. It’s painful. It can look like chronic depression, but it’s something different. Historically the medical world has treated grief with medication or by telling people to exercise. We say, “Let’s talk. Tell us the story.”

“I think what we do is a very big wellness program. The message is that grief is the natural and normal reaction to a death… We say, ‘Let’s talk. Tell us the story.’”

Q: What happens when people don’t talk about their grief?

A: I think it resurfaces when the next death happens. The psyche can do an amazing job of repressing. But the memory is still there. I think a lot of mental health issues are due to losses that weren’t attended to.

Q: What are the biggest concerns of people dealing with the death of a loved one?

A: That they’re going crazy. They don’t understand what they’re going through. Grief can be all-encompassing. People think there’s something wrong with them if, five months after a death, they can’t concentrate at their job. But it’s normal. That’s what we say all the time: Everything’s normal. There is no right way or wrong way to grieve. There’s just your way.

Grief can be like a roller coaster. You can feel happy, then sad, then happy, then sad. When you’re going through those feelings, you don’t know they’re normal. You feel you should be getting better: better-better-better. But grief is better, not better, better…then you may hit a bottom. The other metaphor is that grief comes in waves: You turn the corner of the A&P, and burst out crying.

“Grief can be like a roller coaster. You can feel happy, then sad, then happy, then sad….You feel you should be getting better: better-better-better. But grief is better, not better, better…then you may hit a bottom.”

People in this work have come to see that there are tasks of grieving. The first task is to accept the reality of what’s happened. I was with a woman yesterday whose husband died on Saturday. She said, “I heard you do bereavement counseling. I think I’m fine, but I might need a group at some point.” She said she hadn’t cried. I asked, “Have you thought that maybe you’re in a little shock, that it hasn’t permeated your body, in every pore, that your husband has died?” And the woman, who was in 60s or 70s, looked at me and said, “Yes, I forget about it sometimes. I woke up this morning, and it took me a minute before I remembered.” The first task is to accept, “OK, it’s happened.”

The second task is to feel the feelings – experience the pain. That’s the hardest part. It’s when you’re missing the person who’s died. It hurts physically. It hurts emotionally. We ask people to tell their story again and again and again. People need to tell the story of someone’s death more than once. The more you tell it, the more real it becomes, and the more you remember. When I had my babies, I needed to tell people the story of everything that happened over and over again. The same thing needs to happen at the end of life when someone dies.

Q: How do you help people access their feelings?

A: We talk about how you are now. What are you going through? What are your worries and concerns? In talking about what’s going on now, feelings come out. The feelings may be good, but they also may be ones you’re afraid to talk about, like guilt or regrets. Sometimes there’s ambivalence. It might not have been a great relationship.

Everybody is different. Sometimes families don’t understand the reactions of different children. One child is crying, the other’s not. We’ll ask, what were they like before? You grieve in character. If you were a crier before, you’ll probably be a crier now.

“Sometimes families don’t understand the reactions of different children. One child is crying, the other’s not. We’ll ask, what were they like before? You grieve in character. If you were a crier before, you’ll probably be a crier now.”

The next task is to learn to remember, to commemorate the person who died, in your own way. You might put up a small shrine with pictures and candles. You might have pictures next to your bed. You might go to the cemetery. You might wear a heart necklace with with a photo of the person. Every way is OK.

One of the beauties of groups is that they normalize. Support groups are wonderful that way. People talk to other people and realize, “I’m not the only one who hasn’t given the clothing away, and it’s been two years.” “I’m not the only one who goes to the cemetery every day.”

In a group I ran years ago, there was a young widower with little children. Midway through the eight-week group, he felt safe enough to share how he remembered his wife. He said, “I’m a runner, and the cemetery is in my town. Every morning, I run, and I go to the cemetery, and I lie down on her grave.” There was quiet in the room. He looked around the group. He knew he was revealing something that could go either way. Were people going to say he was crazy? And the group said, “Oh, that’s so wonderful.” He had such a sense of relief.

When somebody dies, there’s a real fear that you’re going to forget them. You’re going to forget their voice, what they look like. In the beginning, when someone has just died, you think, “Where the hell are you? Where did you go?” Even if you believe in heaven, you ask, “Where are you?” One of the goals in grieving is to bring the memory of the person inside your heart. In the beginning the memory’s too painful – you can’t bring that person inside you forever yet. But eventually, they’re just with you.

“When somebody dies, there’s a real fear that you’re going to forget them. You’re going to forget their voice, what they look like. In the beginning, when someone has just died, you think, ‘Where the hell are you? Where did you go?’… One of the goals in grieving is to bring the memory of the person inside your heart.”

Q: We live in a culture that goes so fast. How do you help people slow down and hear what’s going on inside them?

A: Hopefully they have a certain experience in the group or in individual counseling – a pause that happens when people feel someone is truly listening to them. People going through grief need to surround themselves with people who will listen and be with them. There are a lot of casualties after a death – friends who are not there for you, family members who don’t understand. We ask people who are grieving, “What do you need?” “I need someone to just listen and not tell me what to do or what to feel.” “OK, find that person in the next week. Who can do that for you? That’s a need you have.” “Well, maybe my friend Ann. She’s a good listener.”

We say this to kids, too. In our society, adults are not good at listening to sad stories, especially from kids. They don’t want to see sad kids. They want you to be better. They want you to be fixed. People are fine for a little bit, then they say, “OK, we want the old Patty back now.” We tell people to give somebody the job to be your special friend, who you can call up and say, “I just need to cry. I need to remember. Would you let me do that?”

A lot of this is common sense. But I think in many ways, we as a society have lost our connection with our instincts. We don’t trust ourselves. We tell people, “Trust your gut that you know what you need. If you need to stay home from work one day because you just need to cry or go to the cemetery, do that. It’s OK.” It’s like taking an antibiotic. Attend to your wound. This doesn’t get better by itself. It doesn’t get better with time. It’s what you do with that time.

“We tell people, ‘Trust your gut that you know what you need. If you need to stay home from work one day because you just need to cry or go to the cemetery, do that. It’s OK.’…Attend to your wound. This doesn’t get better by itself. It doesn’t get better with time. It’s what you do with that time.”

The next task is to start to reinvest in the world. The focus is less on the person who died and more on you. You learn who you are without this person who died. People are different after a profound death. It changes them. They can become better people. They can learn through that process and grow.

Q: Are there things that people have said, who have come out the other side of mourning,  that have stuck with you?

A: There was one wonderful man who came in after his wife died. They had an amazingly close, storybook relationship. He was grieving her so intensely. He really wanted to die some days. He wasn’t going to do anything with that feeling – he had grandchildren – but that’s how bad his pain was. He went to the cemetery every single day. I never would have imagined that he would have a relationship with another woman, but, today, he does. He’s never going to marry her. His wife was his one true love. In his wildest dreams, he probably never would have envisioned that he would be enjoying life again. He still misses his wife, and always will. But he’s different now.

We’ve had people who have come back to volunteer at the center because they want to give back. I’m in the middle of a volunteer training right now. It’s amazing. The world just stops: We’re talking about death, dying and grief. There’s such silence and presence.

Our goal is to teach volunteers how to be present. One of the nights of the training is about sharing a loss that you’ve had. We do a guided meditation, then divide into groups of two. For half an hour, the two people tell their story to each other. We then come back together and talk about what it’s like to have somebody really listen to us. Some people have never experienced anything like it. Our world today is so much about phones and computers and multitasking, we’ve forgotten how to be present for someone. The biggest gift you can give anybody is to let them know that you hear what they’re saying.

“Our goal is to teach volunteers how to be present…. The biggest gift you can give anybody is to let them know that you hear what they’re saying.

Q: What kinds of rituals do you use to help clients open up?

A: Simple rituals. At the beginning of every session, people introduce themselves saying, “Hi, my name is ___, and my mom died.” It’s a ritual of articulating the death and accepting the reality. For children, this can be really hard. They may not want to say it. They can pass. There’s also a checking-in about how the week has been.

Our rituals are more focused at the end of the group. One of our goals in these eight-week groups is teaching them all, children through adults, how to deal with loss. Hopefully we are planting seeds that they can use in the future.

We have a goodbye ritual the last night. In the adult group, it might be having stones on a plate. You take a stone, hold it, and say a wish for yourself and a wish for the group. The stone will be passed around, and everyone will touch it and bring it back. It’s a way of saying goodbye to each other.

In the Tree House, with the kids, we have a ritual at the end called the Memory Pillows. We start with blank canvas pillow cases. We put pictures of the person who died on the pillow case. For the last three weeks, the kids decorate the pillow cases in their own individual way. They draw pictures. They write letters to put inside the pillow. One little boy decorated his with his dad’s neckties; the dad had a magnificent collection of silk ties. Then we put pillows in and close them up. On the last night, we put up a painting of a tree on a big drop cloth. We’ll remember each person who died. The family will come up and hang their pillow on the tree. By the end we have a huge mural. In a very visual way, the kids see that they’re not the only one going through the death of a loved one. They see they’re all different and have done this work in different ways, and it’s all right. It’s good to remember, any way you want to remember.

“In a very visual way, the kids see that they’re not the only one going through the death of a loved one. They see they’re all different and have done this work in different ways.”

Q: In what ways is this spiritual work?

A: It connects human beings on such a very, very basic level. I consider that sacred work. I think that’s what this world is about, being present and connecting with people.

Q: How did you get into this field?

A: I became a nurse because I wanted to help people.

Q: When did you first feel that?

A: As a kid. I was raised Catholic. Along with the guilt – which everyone talks about – being raised Catholic made me want to be a better person. I always knew I’d be in a helping profession. I wanted to be a nurse all through high school. I liked healing, the hospitals, the white uniforms. I loved being in the middle of crisis and being with people.

When I went to college, I majored in nursing. They were just starting nursing degrees. I discovered psychiatric nursing, and thought, “Whoa, this is great.” I loved it. I was drawn to it.

I think I was also drawn to death. I was scared of death when I was young. There were no big deaths in my family. But my best friend died when I was six. She and I had measles at the same time. This was before the vaccine. I recovered, but she died. I have this memory of being in a dark room – when you had measles they kept you in a dark room – and emerging and asking, “Where’s Mary Elizabeth?” “Oh, she died.” I didn’t go to the church for the service.

I’ve always been the kind of person that, when I’m afraid of something, I don’t run away from it. I go to it. I want to figure it out, so I won’t be so afraid of it. When I graduated from college, before becoming a psychiatric nurse, I worked for a year on an oncology ward of a hospital. Patients died every day, alone, in pain, in a very sterile setting. I remember going into the med room and just crying.

“I’ve always been the kind of person that, when I’m afraid of something, I don’t run away from it. I go to it. I want to figure it out…”

Q: Did you think you’d wind up where you are now?

A: No. Never. It’s been a process. Two big things that I’ve learned in the work that I’ve been doing the past 12 years – and I’m a different person because of it, I believe that – are the value of being totally present to the moment and that life is a process. Grief is a process, and life is a process.

In a way, I feel everything has led me to this. I was a psychiatric nurse for years. One day, when I was working at St. Josephs Hospital in Yonkers, I was having a conversation with the social worker, and he said, “You know, my wife’s starting a hospice program at Phelps Hospital. Are you interested in a job there? They need a nurse.” It was pure coincidence. That year on the oncology ward was so horrible. Part of me thought I would go back to that and try to help make it better.

I interviewed and everything fell into place. It was the infancy of hospice. It was all very grassroots. It was wonderful. We relied on volunteers. We had a chaplain. We brought in visiting nurses. I learned how to work with volunteers. I learned how to work on an interdisciplinary team. It taught me a lot about starting a program. I took a break at one point to spend more time at home, but continued to work with the hospice. Then Phelps asked me back to start a bereavement program to support families of hospice patients.

We networked with other bereavement programs. One day I went to a talk at Jansen Memorial Hospice, and the chaplain approached me and asked, would you like to be a director of a new program for children and adults? They saw a need to bring bereavement work not just to people with loved ones going through hospice, but to the community at large. They felt there was a lot of unattended-to grief in the community. I thought about it long and hard. I never aspired to be a director of a non-profit, with the fund-raising and administration. But I took the job. It’s been an incredible growth process to build something from nothing.

Q: Do you have things you that you do for yourself spiritually?

A: I do yoga. Not as much as I want to, but I love it. When I get up in the morning, I have a semi-meditation to try to center myself. I get my cup of coffee and sit in my living room and try to be still for five or 10 minutes.

Q: And you get spiritual experiences in your work.

A: Absolutely. Usually every day there’s a moment – we call them moments – when we’re working with people, or working with volunteers, and you make a connection. It’s a gift.

Q: Has this work changed your relationship with death?

A: In a way, I think I’ve befriended it. I don’t want to die, but I now know I don’t have to die in pain, that I don’t have to die alone, and that millions of people have been through it. We don’t know what is on the other side, but I have faith that there is something.

Q: How do you avoid burnout?

A: I try to keep a sense of balance in my life. A stable home life has helped me a lot. It helps me turn work off when I leave here. The times that are hard are when there’s not balance. Something is happening at home and my equilibrium is off.

I have worked with incredible, amazing people with sad, sad stories. But I find that when I’m right there with them, things come into focus. It becomes clear that what a grieving person needs is someone to just sit with them and listen to them. What we do is very simple. We’re not trying to fix people. We don’t have the pressure of trying to make things better. We offer our presence. We listen and validate. We try to help people not feel so alone; there’s a healing when that happens.

“What we do is very simple. We’re not trying to fix people. We don’t have the pressure of trying to make things better. We offer our presence. We listen and validate. We try to help people not feel so alone; there’s a healing when that happens.”

I don’t think everybody can do this work, just like not everybody can be a social worker or a doctor or nurse. But those people who can do it, and do it for a long time, can have a very full life. This is work that makes you pause and appreciate what’s important. The best part is to see someone when they are so fragile and so raw, and then see them a year later and they are so different. That’s why I don’t get burned out. I see the resilience of life, that people do go on.