Transcription of Love Maine Radio #341: Carol Schoneberg and Anne Heros
Speaker 1: You are listening to Love Maine Radio, hosted by Dr. Lisa Belisle and recorded at the studios at Maine Magazine in Portland. Dr. Lisa Belisle is a physician and editor in chief of Maine, Maine Home and Design, Old Port, Ageless and Moxie magazines. Love Maine Radio show summaries are available at lovemaineradio.com.
Dr. Lisa B.: This is Dr. Lisa Belisle and you are listening to Love Maine Radio, show number 341 airing for the first time on Sunday April 1st, 2018. Today we speak Carol Schoneberg who has worked as a hospice educator in Maine for the past 25 years. Anne Heros is the executive director of the Center for Grieving Children, an organization providing support to grieving children, young adults, teenagers and families. Thank you for joining us.
Speaker 1: Portland Art Gallery is proud to sponsor Love Maine Radio. Portland Art Gallery is the city’s largest and is located in the heart of the Old Port at 154 Middle Street. The gallery focuses on exhibiting the work of contemporary Maine artists and hosts a series of monthly solo shows in its newly expanded space, including Ingen Jorgenson, Brenda Cirioni, Daniel Corey, Jill Hoy and Dave Allen. For complete show details, please visit our website at artcollectormaie.com.
Dr. Lisa B.: Carol Schoneberg has been a hospice educator in Maine since 1992. She has served as an end of life educator, bereavement services manager and grief counselor at Hospice of Southern Maine, Maine’s only freestanding not for profit hospice since its inception in 2004. Thanks for coming in today.
Carol S.: Happy to be here.
Dr. Lisa B.: The work that you do is what many would consider to be difficult and yet it’s your chosen field.
Carol S.: It is.
Dr. Lisa B.: Tell me about that.
Carol S.: Well one of the things I hear often is, “How could you do that? It must be so depressing.” And if I found it depressing, I could never do it and I couldn’t have done it for this long. It’s often sad, but there’s a big difference and it’s very … for me, extremely meaningful. It’s always been good to help me prioritize what I think is important in life and it gives me joy to do this work, which sounds strange to a lot of people.
Dr. Lisa B.: How did you make the decision that this would be your focus in your life?
Carol S.: I think it found me. I really feel … I came to feel that it was a calling and I often feel I’m sort of embarrassed to say that. It seems sort of pretentious in a way, but I realize looking back over my life that there were things that happened, starting around five years old and throughout my life that were leading me in this direction. I was always the person in my family, in my circle of friends that for whatever reason was comfortable. It wasn’t something I turned away from. I had a friend in San Francisco when I was in my early 20’s who took his life. He jumped off the Golden Gate Bridge and I remember sitting around at the funeral with my friends, my peers, people my age and how stunned we all were, and it was for many of us our first experience with the death of a friend. And there was something about it that really stayed with me in the sense of grief and how people didn’t wanna talk about it.
Dr. Lisa B.: Why don’t people want to talk about grief?
Carol S.: It’s amazing how many of my clients will tell me they think grief is negative and they don’t wanna talk about something negative. They think dying is negative and part of my role is I hope to be able to help people see that grief is neither positive or negative. It’s grief. It’s a true emotion that is central in our lives. It happens to everybody and it’s painful. So of course we naturally wanna turn away from anything that’s painful and when someone has experienced maybe for the first time, the death of a central person in their life, they have never known a pain like that before.
Dr. Lisa B.: When you say that it’s something that brings you joy, tell me a little bit about that, because it’s easy to make assumptions as to how we would all feel in your situation.
Carol S.: Right, right.
Dr. Lisa B.: But you have your own experience of it.
Carol S.: Right. It’s not joy-like, the joy I felt when I found out when I was gonna have children or the joy I felt when my grandchildren were born. It’s a kind of joy in witnessing … for one thing, witnessing people and the resiliency that we are all capable of as human beings. So when I see a bereavement client who I witnessed them going through their journey and then at a certain point, our time together comes to an end. And then I might run into them in the grocery store or I run into them somewhere and they look full and alive and they’re living their life and I know how deep their grief was and how the things that we tend to say at the beginning of our grief. Things like, “I don’t care if I go on or not. I don’t care if I wake up or not. My life will never be the same.” Which it won’t, that’s a true statement but that doesn’t mean it has to be a pejorative statement and so seeing this capacity for resiliency is I think part of why I do the work. And in working with a family where someone’s dying and meeting with them maybe before they decide to come on to hospice, I sometimes do informational visits for families.
It’s inspiring to meet with a family that is able to speak openly about what’s happening and typically it’s because the patient is willing to go there and so that is very fulfilling to work with that family. And then to see a family where they start off not able to talk about it but it’s still coming, death is still coming. They sign on to hospice and if they have enough time between when they sign on and when the person dies, sometimes there’s a transformation that happens and a family might be able to have healing that they didn’t have before or have conversations that they didn’t have before. And often it’s brought about because the members of the hospice team social worker, the nurses, everyone that’s involved, chaplains, volunteers, they can help in that process of gently guiding someone to a point where they can make that change. So that’s very satisfying and fulfilling to see that happen.
Dr. Lisa B.: How does the team help to guide that process?
Carol S.: Well when somebody signs on to hospice, they are saying that they want this interdisciplinary approach to care and it means that they will let a hospice nurse come in, hospice social worker, hospice aid, chaplain, volunteers, and we also have medical directors that work closely with their doctor. So every member of that team is … we like to think of everyone’s on the same level, no ones job is more important than the other and each person as they’re in there working with the patient and family, they are having their impressions of what’s happening. It might be that the patient feels most comfortable with aid and they might really open up to them in maybe a way that they’ve not opened up to their family or to anyone else. And they might talk about their fears or their wishes of what they wish could happen before they die and because everyone on the team is educated, trained on end of life care, they’re tuned in to listening for these that people might say that someone else might miss. So it might be to say, “Tell me more about that.” And then it might be to say, “Is this something you’ve talked with the social worker about because she might be able to help you have these conversations with your family.”
So it’s that kind of everybody working together, everybody having their eyes and ears open and coming together to see how can we better serve this family, how can we help them the most. So there’ve been studies done that have shown that if someone can be on hospice for a minimum of 60 days, that it can make a great difference in the way they die and the way the family’s able to have some possibility of healing and it also makes a difference in their bereavement.
Dr. Lisa B.: As someone who has referred patients to hospice before, it is always tricky because there’s no way to accurately determine when someone is going to die. It’s always just a best guess.
Carol S.: Right.
Dr. Lisa B.: And it’s un … It’s always … It always feels unfortunate to me when a patient just barely gets into hospice and then they pass away.
Carol S.: Yes.
Dr. Lisa B.: Because it feels as if it were a missed opportunity.
Carol S.: Yes, there was when that happens. You know lots of times we get a patient sort of the 11th hour and there’s not a lot that can be done when you get a patient who … maybe you have them the last day of their life. Some people end up at the Gosnell House four hours before they die and often I will hear in bereavement or in a support group or individual grief counseling, “I wish we would’ve come to hospice sooner. I wish we would’ve known about it sooner.” And I would agree with you yes, it’s very hard to prognosticate a terminal illness when somebody … how much time they have left and yet you probably know, it’s the question everybody that’s been told they have a terminal illness, “How much time do I have?” When a hospice nurse gets to the house the first time, “How much time do you think he has?” It’s that piece that most people wanna know, not everybody, some people, “Don’t tell me. I don’t wanna know.”
I’m a big believer that for instance, when somebody is told they have a stage four cancer and I would say cancer is an illness that as a relative term, it’s a bit easier to prognosticate because of the stages and typically what is seen. I would hope we would reach a point some day and I hope it’s while I’m still here to see it when a physician and an oncologist would have that conversation with their patient when their cancer becomes stage four, to introduce hospice, “Here’s what it is, let’s talk about. Would you like to meet with somebody who could tell you about it. You’re not ready for hospice now and I hope it’s going be a long time before you are, but I …” This would be the words of the oncologist, “But I’ve learned that educating about it sooner makes it easier for when the time comes to access it. You’ll already know what it is. You know the difference it can make at the end of life for you and your family.”
So I’d like to see that become routine and I would say to all doctors, if your gut is telling you this person has a prognosis of probably six months or less, or even if you look at this person and you think, “I wouldn’t be surprised to hear that they’ve died in the coming year.” That’s the time for a hospice referral and use us. Use hospice professionals to help you have language to do that, to be able to have somebody that could come in and talk to that patient, that family if they’re open to it. Once again, that piece of people coming sooner rather than later is really important, very, very important.
The other thing I’m thinking of is there’ve also been some studies done to show the negative impact of over-prognosticating, of giving false hope and the studies point to it is of no benefit and in fact, what I see in my work as a grief counselor, is at least people really angry. If a doctor says, “Because it’s hard to say.”, and maybe they say it because they’re uncomfortable. They say, “Well, I don’t know. It could be two weeks, it could be a year.” So what that family and patient holds on to of course, is the year and then when death comes three weeks later, they are stunned as people are anyhow when they lose someone they love. But they’re angry, they feel lied to and that is a hurdle for them to overcome in their grieving process before they can even begin to focus on their grief.
Dr. Lisa B.: Because death has for many people, such a negative connotation, it is something that many people feel uncomfortable talking about at all.
Carol S.: Yeah.
Dr. Lisa B.: And even if you are not someone who has a family member in hospice, you may not know what to say to be supportive of a family that’s dealing with the possibility of loss. What type of language do you suggest that people use? What are things that can be said that individuals or families might find helpful?
Carol S.: So if I heard you correctly, you’re talking about the person who maybe they have a friend or a family member or somebody who-
Dr. Lisa B.: Yeah.
Carol S.: They’ve heard is terminally ill. The thing that we all … that I hope people will do is to say something to acknowledge in some way. For people who are facing the end of their life, one of the common things they feel is a sense of abandonment by … often by the medical community and by the people who love them, who they are hoping will check in or be around. It might be to say, “I don’t really know what to say or do, but I know that I wanna support you and I wanna be with you.” That’s a huge thing. It might be to say, “Is there something I could do to help you at this time?” Depending on where the person is in their dying process, if they’re on hospice, it might to say, “Are there … Is there a project that I could do to help you to complete that might be meaningful for you?” Not to be afraid, which is hard to do to talk about it, because we talk about death, doesn’t make it come any sooner and that’s often what I … when I’m doing education in the community about hospice, that’s what I’ll say. When I’m meeting with a new hospice family, I always say that.
It’s about being present to someone, much more than any clever words we might say and there are ways that we let somebody know that we’re present with them. It might be a touch, it might be a hug if they want it and just to say, “I’m gonna … I’ll be here for you throughout this journey, however long it may be.”
Dr. Lisa B.: There are for some people unresolved issues.
Carol S.: Yes.
Dr. Lisa B.: I guess you’re laughing and smiling ’cause maybe it’s all people have some level of unresolved issue.
Carol S.: I think so. I do. Some people very little. Some people, they live their life in that wonderful way of saying what they feel in the moment and saying I love you and saying I’m sorry when they’re sorry, doing those things as they go through life, and they’re just maybe a family where they’re just more open. We say in the hospice the easy part is dealing with the body, the physical body, the pain and symptoms that we … our hospice people are very skilled at. The difficult part is typically family dynamics. If you have five adult children, rarely are all five on the same page. They have five different relationships to the one who’s dying, they don’t all have the same relationship. Some may have a particular ease in being present to death, others not at all. Some wanna talk about it, some don’t and every bit of that family’s dynamics from day one, are gonna carry into the dying process. We say in hospice we tend to die the way we’ve lived, which is what we see. Somebody who’s been open and shares everything, they’re gonna be open and sharing they’re dying, talking about how they’re feeling, and the opposite is true and the same is true of grief. We only are who we are. We can only manifest in general, unless we have a transformation in that way.
So that family dynamics piece is really tough and that’s where hospice can be very helpful as well. Hospice doesn’t come in and tell people what to do or what to feel, but once again, that sense of is there that something that can be done to help people be able to heal their relationships before they die. Sometimes it happens and it’s very wonderful. Sometimes it happens 10 minutes before death. Sometimes it takes place over the weeks and months and sometimes it never happens. We have had patients who might have a loved one who they’ve been estranged from, maybe an adult child estranged 20, 30 years and as the social worker is exploring this piece of their story, they might ask them, “Would you like me to try to locate your daughter?” And typically the person that says this is what I’m struggling with will say, “Yes.” They might not, but often they say yes, and sometimes the team is able to track down, locate the person with the help of the internet and everything else we have today and sometimes the person is … when they’re called and said, “Your mother has given us permission to call. She’s a hospice patient. She’s very near the end of her life and she would very much like to see you.”
Sometimes the person says no, just … and it’s not ours to judge. Whatever the wounds were may be too great for that person to be able to overcome and some people have said yes and have come from great distances. Had a kind of reconciliation and healing and very soon after that, maybe within minutes or hours, days, the person lets go and they can die peacefully.
Dr. Lisa B.: Is there a difference between the way that younger people in … who are dying in hospice and older people who are dying in hospice experience that process?
Carol S.: In some ways no, in that it’s more about our type and nature than it is our age. So I see some people who are in their 70’s, 80’s, 90’s who are able to touch everyone around them, inspire everyone around them as they go through their dying, and I see younger people who are able to do that and those who may not be able to. One of the things when we have a younger patient and we don’t have pediatric hospice, so our patients are generally over the age of 18. We have very, very over our 10 years of the hospice house being open, the Gosnell House in Scarborough, very few, handful of patients I would say in their 20’s and of course, what we see more often with a young patient, is often their parents are living. So that’s a loss that any parent hopes they never have to hear about or deal with and as staff, it has a different impact when there’s a mother or father who is … they are in that room with a person who’s dying, and of course, we witness it in the home as well. So I don’t know if that responds exactly to your question, but those are some of the things we see regarding the ages of people who are dying.
There’s always the person who’s dying, who their approach because it’s their nature is why me and then there’s the person who’s dying who says, “Why not me? It’s gonna happen some day.” So neither one of those approaches is right or wrong but it is definitely a very powerful rich experience as a hospice worker with that person who is why not me, and also who is able to share their dying process. That’s how we learn, I certainly learned most of what I feel I know or understand through the people I’ve worked with.
Dr. Lisa B.: Have you found that people are very similar in the way that they die or that they are very different in the way that they die?
Carol S.: I think they’re quite different. Some of the deaths we see are very peaceful, very quiet. A person might just sort of slowly shut down and obviously this type of a death is really relative term easy, but it is the least painful in a way for a family to witness and watch. We all hope for a peaceful death for ourselves, for the people we love. Some people have what I would think of as a more traumatic dying experience based on their illness. They might have more things that as the body gets near death, whether it’s more symptoms that manifest, some symptoms that might be very distressing for a family to witness. Hospice does everything it can to help manage and control those symptoms. The nurse will also help prepare a family if they have a particular type, lets say of cancer that this could occur, so that they might not be as shocked. We see people who are fighting death until their last breath I would say and people who have made peace and have if will, acquiesce to death. We see people who might have a smile on their face when they die, who look beautiful and peaceful. They might even have a glow and others that have been a much harder death.
Dr. Lisa B.: What do you think it is that people fear most about dying? I-
Carol S.: Fear of the unknown.
Dr. Lisa B.: That’s pretty straightforward.
Carol S.: That’s … If I had to just … If I just had to reduce it to one sentence. There’s a difference too between fear and sadness. I think the fear … Largely, I always think of Woody Allen who said, “I’m not afraid to die. I just don’t wanna be there when it happens.” And I think there’s so much truth to that. Many people, if I have an opportunity to ask them, “What’s the scariest part about all of this for you?” Typically, what people say is fear of dying in pain, fear of dying alone and fear of being a burden to the people I love. Those are the kinda universal pieces that people talk about with fear. The other thing that a dying person is … once they get that terminal diagnosis, no matter how much time they have left that I find people wrestle with is sadness of leaving behind the people they love. It always comes down to that and people who might say, “I can do this, but I can’t imagine leaving my children.”
Dr. Lisa B.: Are there ways that hospice supports families once an individual has died?
Carol S.: Yes. Hospice … One of the things that distinguishes hospice care from a regular medical model of care is the families, the unit of care. So we very much are there to provide care and support to the patient and the family. After the patient dies, we provide bereavement support to the family, anyone who wants it in the family for one year following a death. It’s part of the Medicare guidelines and regulations. So any hospice program in the country is required to offer bereavement support. What that support looks like varies widely from program to program. We’re very proud of our bereavement program in that we offer individual grief counseling during that year. We have between eight and ten, eight week support groups every year that are run for an hour and a half each week for eight weeks. They’re generic groups, so anyone over the age of 18 who has lost a central person in their life can attend. It’s open to the community as well and our individual grief counseling is open to the community as well. So it’s no cost.
Sometimes a doctor’s office will call me and say, “I met with one of my patients today and his wife died some months ago and he was crying and is really struggling with that, somebody that you could see.” And then yes, we will and we do. Not everybody wants bereavement support. We also … Part of our services are we do a monthly mailing with some bereavement literature that we mail every other month and with that packet, they also get notices of all the groups that are happening. When I was saying not everyone wants … formalized professional support, we know that around 40 to 50% of people will heal well on their own and typically it’s the person who has a strong support system, really important. You might be connected, family, friends, workplace, faith community and somebody who is the person who tends to approach their grief rather than avoid it.
And there are people that … A very small percentage of people might end up having what we call a complicated grief, where they might be best served working with someone who specialized just in complicated grief to help them be able to … It’s a … I think a simple way of thinking of it is somebody who is … gets extremely stuck in their grief process and isn’t able to really begin to move forward in their grief, and in my view, our grief doesn’t go anywhere. It just hangs out, whether it’s for a few months or 50 years, an unreconciled grief or a grief that one isn’t able to actually mourn, does not diminish and it has a really negative impact on our lives. I think of it as kind of a life half lived.
Dr. Lisa B.: I’ve learned a lot from our conversation today and I appreciate your coming in and sharing your insights and also all the work that you have been doing for decades. Really … I’ve been speaking with Carol Schoneberg who has been a hospice educator in Maine since 1992. She has served as an end of life educator, bereavement services manager and grief counselor at Hospice of Southern Maine, Maine’s only freestanding, not for profit hospice since its inception in 2004. Thanks for coming in today.
Carol S.: You’re welcome.
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Dr. Lisa B.: Anne Heros serves as the executive director of the Center for Grieving Children, an organization that serves grieving children, teenagers, families and young adults with peer support, outreach and education. Thank you for coming in again.
Anne Heros: Thank you. Good to be here.
Dr. Lisa B.: You’ve now been doing this for … I guess this is your 31st year. Right? With the Center for-
Anne Heros: The center’s 31st year.
Dr. Lisa B.: Yes.
Anne Heros: They started in 89 … or sorry, 87. I’m thinking of when I came to the United States. Sorry, 87 is when the center started and our founder, Bill Hemmens started it because in his own life, his only sister who was a single mom, she was 39 and was diagnosed with terminal cancer and she had a nine year old daughter. So when his sister died, he was devastated himself, with less trying to support his niece and he looked around Portland at that time and there were some groups for adults. There was nothing for children and he thought this was a real need and around the same time he saw something, I believe it was on 20/20 that just listed this new place that had opened out in Portland, Oregon called The Dougy Center. And he thought, “That’s what we need here in Portland.” And he was a stock broker, so he [inaudible 00:33:54] his job, tapped into his savings, went over there to see what they were doing and then came back and adjusted what he had seen and created his own center. We were the third in the U.S., so he made a really special effort to the model.
It was very important to him that the model was a family model, which again given that time back then Kübler-Ross was only beginning to write about grief. There was hardly anything getting written about children or even the acknowledgment that children grieved. So this was very important to him that it would be a family model, where the whole family could come. But also what was important was the fact that it would be facilitated. These groups, which are age appropriate would be facilitated by people from the community, who had gotten through a 30 plus hour training and then they themselves, volunteered would be supported by staff and clinical consultants and all of that to make sure that this was … as I said, it was a test back then. Obviously now, going on 31 years later, a lot more has been written to in turn … actually confirm that this approach does work. So he had a great vision.
Dr. Lisa B.: You are originally from Ireland.
Anne Heros: Correct.
Dr. Lisa B.: Do they have things like this back there?
Anne Heros: I was not … Again, you don’t really think about that at that time back then. I mean now they do, but it’s not done the way … What I’m involved in is a very different kind of model. There and in some other countries, it either is a church related type model, but not something that’s done by volunteers and it may be a clinical model, but nothing to the same degree as what I’m … what we’re involved in here. So it’s … I think what we have here in the United States is pretty special. As I said, we were the third and there’s now over 300 in those 31, so.
Dr. Lisa B.: What is the benefit of involving community members?
Anne Heros: Well it is … It’s … To me, ’cause I’m somebody who actually also benefited from attending the center, it is … The fact that it is other people from the community, it is like a gift of unconditional love that’s the gift from like what I would see from being an adult and being aware of being the facilitators in my group. But the other magic is the fact that it is peers. You’re gonna have other people in your group who are your same age and therefore you’re breaking down the walls of isolation, you’re helping children to see that they are not alone. There are others experiencing the same kind of situation and that there’s hope. There’s other people there and they seem to be doing okay. I mean our program is a year round program. So you could be the newest child in the group but then you could also be aware of another child who’s there a couple of months. So it is … It’s giving you that sense that wow, each day … This … I’m going to be okay and I think that’s pretty special.
Dr. Lisa B.: You benefited from this because of your daughter’s death.
Anne Heros: Correct. Yeah.
Dr. Lisa B.: And it seems as though it would be hard to know when one is grieving something that large, when or how to reach out for some people.
Anne Heros: Well I think that’s where awareness of our existence is very important. For me, I became aware of the center because they actually responded to the school because it was a sudden death and that’s how I became aware that they existed. And then also, there was somebody in the school who actually volunteered at the center and I volunteered in the office of the school. I guess I had an ulterior motive because I wanted to keep an eye on my kids and you know, ’cause you are very protective at … particularly at very pivotal times like this. You are overly protective and so I got to know her and she told me more about the center and so it kinda was there in my mind that in a way, even though I’d had a lot of education behind me around children, ’cause I was in education back in Ireland. But this aspect of a child’s life, how could you make it through and also for me, as a parent, how could you make it through and be a healthy parent to parent these kids going forward.
Dr. Lisa B.: Your daughter was 12?
Anne Heros: She was 10-
Dr. Lisa B.: 10.
Anne Heros: And it was a sudden virus that attacked her. We did not realize that she was sick. We thought she had a stomach virus, so.
Dr. Lisa B.: And she had … has siblings.
Anne Heros: Yes. She had two brothers. She was the middle child, she was 10. Her brother was 11 going on 12 and her youngest one was eight. So she was … We used to joke and say she was the Oreo or the white part in the cookie. You know what I mean? She just was the glue, she really was.
Dr. Lisa B.: So I also wonder, it would be devastating enough I imagine to lose a child, but then to continue to have to parent your other children.
Anne Heros: Absolutely. It was a double edged sword in the sense that you really just wanted to curl up in bed and pull the covers over your head and come back out a month ahead. But you didn’t have that luxury when you have got children to parent and in that sense, there was a bit of a saving grace in it too, that I had that … that demand on me. I think the other thing for me was the fact that I was only here two years from Ireland. So I didn’t really … I hadn’t really built up that network yet of friends and obviously no family and whatever. So being able to reach out and find a place like this really helped me, but I mean again, they were boys. So again, a little different but for me, it was a case of well you know what? This is did not come with a rule book. It’s there, I’ll try it because having as they say a little knowledge is a dangerous thing.
I knew that this was a … as they’re calling it now, an adverse childhood experience and to make … And having moved to a new country to … So you take these experiences that children experience throughout their lives and some of them can be very, very traumatic and it can severely impact the development of that child. So I was very aware of that and so I knew … I became a voracious reader to learn all that I could about how kids experienced this and as I said, there wasn’t a lot written, but the little bit that was out there, I managed to access. And actually somebody from the community, what she did was she actually went to the library and got about six books and took them out and brought them and dropped them off and just left them there. But the challenge at that time is my ability to concentrate in those very early days, was very small. So really articles were something that I could really just concentrate on for a short moment of time and get some information from them, and I … There were some important pieces that I gleaned back then and one of them was children saying how a bereaved parent kind of idolizes the one that has died and the two are … the ones that are left behind are kind of relegated.
So that was something that I wanted to make sure, as much as possible was not going to be felt by the kids and also that you didn’t become overly protective and not let them experience their childhood. And I have particular, kind of moments when that piece that I picked up kind of came back to me in very … in front of me in the sense … The first time was when my oldest boy got his driving license and he’s driving off in the car with his brother and it’s kinda like I’m standing there looking at my future just driving away in a car and it’s like, oh my goodness. But again, you gotta hold back on that. The other one was when my older one came home from college and said he wanted to join the marines and I thought oh, wow. Talk about wanting to hold yourself back and not want wrap them [inaudible 00:43:56]. But those were important things for me to know that you had to release and let your children experience the world in spite of the fact that it seems like your world has fallen apart and how do you start to build some comfort and some assurity around what’s going to happen, which I mean in the big picture, you have no control over. But in your naïve way as you’re parenting, you think you can control it all, at least I thought anyway.
Dr. Lisa B.: I’m … One of the things that I over the years have become interested in as a doctor is that we never really let go of grief completely. I mean someone who was in our life that we lose is always with us in some capacity.
Anne Heros: Absolutely.
Dr. Lisa B.: And the more years I have been a doctor, the more I’ve seen that this … it goes on for decades, maybe forever.
Anne Heros: It does. It does and I think that’s what’s becoming … people are beginning to get that message now, which is good because again, going back to Kübler-Ross, she said there were four or five stages in grief and people … I think maybe naively, we wanted to think well, five stages and you were done and it was wrapped up in a bow and that was it and of course it’s not. Of course, it’s not.
Dr. Lisa B.: And not everybody goes through the stages-
Anne Heros: No.
Dr. Lisa B.: Not only at the same pace, but in the same order perhaps.
Anne Heros: No, not at all.
Dr. Lisa B.: And it makes it difficult I think for people who are trying to be helpful-
Anne Heros: Yes.
Dr. Lisa B.: To know what to say or how to act.
Anne Heros: Right. Right. And again, going back to the work at the center, what we train our facilitators in is how to be reflective listeners, because really it’s about getting your voice back. It’s about hearing yourself think in a way and having another person reflected back. It may not be the facilitator that reflects it back, but it could be another participant in the group and that is so helpful. I know from the … Sometimes it felt like you could be going crazy. Right? So that can have its own aspect to it and how do normalize to a degree, something that’s happening to you and that it will be okay by certain supportive factors that are going to help you heal. Whether it is physically, making sure you’re going to your doctor and you’re staying healthy and you’re getting that input and doing all the right things for your body. Two, whether it is one on one counseling for awhile or in our case, you come to a group setting and experience meeting other people who are walking the walk. So you need to look at all of these aspects. We do a piece on quadrants, what about your physical, your emotional, your spiritual health, those are all aspects of an individual.
Dr. Lisa B.: It has … It was just occurring to me, me sitting here now, maybe I’m just slow on the uptake, but in a sense you can be a grieving child really at any age.
Anne Heros: Yeah.
Dr. Lisa B.: It is your … I believe your inner child that is the most impacted by loss.
Anne Heros: Yes.
Dr. Lisa B.: And I have spoken to adults who’ve told me that they’ve benefited from going to the Center for Grieving Children because they lost a parent at an early age-
Anne Heros: Yes.
Dr. Lisa B.: Or a sibling at an early age and they were adults-
Anne Heros: Yes.
Dr. Lisa B.: That went to the center.
Anne Heros: Yes.
Dr. Lisa B.: So it’s interesting that you are absolutely serving an entire spectrum of physical ages, but you’re still dealing with the emotional impact on the inner child.
Anne Heros: Yes and particularly our volunteers, I think are the ones who would speak to that because people will say, “Oh, to be a volunteer do I have to have experience at death in my life?” You know, part of your life and we kinda say, “No. There are different things that can happen to you in your life that will impact your emotional well being.” And so that’s kind of a hidden gift I think that happens at the center and probably part of the reason our volunteers stay for a long period of time, is that is what they’re getting from that, because they wish the center would’ve been there when they’d had that experience. So it’s an inner part of all that’s happening at the center. I mean for us, our groups are as I said, a family model but what … As we were working through the years, the children’s grief journey happens in age developmental stages, but the adults experience it differently. They’re in this timeline and so when the children were ready to leave the center, the adults were saying, “Oh, I really still could do with a group.”
So as the center got more … I guess sustained in its work and its support, it started adding extra adult groups and also at that time, research was showing the better the adult does, the better the child does. So even though we might’ve added a bereave parents group or a widow/widower’s partners group, we were still indirectly helping children.
Dr. Lisa B.: I have a patient who is a writer and puts things out on his blog. So I feel comfortable talking about his grief because he’s very open about it. He’s an older gentleman and his child died I believe when she was in her late teens and she would’ve been my age, which was something that struck him-
Anne Heros: Of course. Yeah.
Dr. Lisa B.: I believe within the last year or so, that this wasn’t a child that was still whatever age she was.
Anne Heros: Right.
Dr. Lisa B.: This is an entire life that had been lost.
Anne Heros: Exactly. Yes.
Dr. Lisa B.: And as a writer, he’s been able to process this.
Anne Heros: Right.
Dr. Lisa B.: One of the things that has come up … So that’s sort of one thing and I’m guessing you might have had similar thoughts on that because your daughter is my sister’s age.
Anne Heros: Exactly. Yeah.
Dr. Lisa B.: They knew each other at Yarmouth.
Anne Heros: Yeah. Yeah.
Dr. Lisa B.: So there’s that piece.
Anne Heros: Yeah.
Dr. Lisa B.: And then there’s also, which is a second piece, the fact that men and women even process death differently. As a father, I think he processed death differently than his then wife. What are your thoughts?
Anne Heros: Yes. You have … I try to explain to people that … that horrific pain that you have in the beginning subsides, it gets easier. It gets easier and then there are … A long period of time, you might not think about it at all as having happened to you, but then something in a life event, an incident of some kind and the flash comes back. Whether it is the day my son was getting married or then you’re … my daughter’s best friend getting married, that was a hard day for me because again you’re thinking, “Wow. That’s a life event I will not experience with her.” And then the same when my son had his first child, which turned out to be a girl.
So those are things that … yes, but they don’t bring you down. They don’t bring you back to where you were, at least I feel that’s because I’ve done so much work and I guess embrace sounds like you welcomed it. I’d trade places in the morning but it’s all the time processing. You’re a human being, you are a process. You cannot stand still. You’re not a … You’re just gonna experience these things and some people … it will bring them back to a … Maybe it will be the thing that will pull the rug from under them and so therefore then they need to get the support and that’s part of the reason the center does outreach to schools, because we’re asking teachers on the frontline to help these students. To do something for these students that in turn might trigger in their lives, something that happened and there, they’ve got to function and be there and support the kids and yet inside, this flashback is happening for them for their own loss. So that’s why we also behind the scenes try to … want to support the teachers ’cause they’re the ones who are going to be there day in and day out to work with the students.
Dr. Lisa B.: And is there a difference between the way that men and women process grief? Is it-
Anne Heros: Yes.
Dr. Lisa B.: Can you easily go along gender lines or is it just every individual is different?
Anne Heros: I think there’s definitely an individual part of it but I think there’s different permissions that are given to the genders. For men, there is that piece about crying makes you look vulnerable, being in touch with your feelings, you’re expected to be strong. The old sayings of, “Well now you’re the man of the house.”, when the father dies and mom is left behind. What a ridiculous thing to say to a 10 year old boy and mom is 30 something or 40, and now to the 10 year old, you’re the man of the house. So those are unfair expectations that are put there. The girls on the other side of it are kinda give that permission to cry and probably do experience more … Their feelings are very much I think to the forefront in a lot of cases, but then there’s other things that they’re not given permission to … like to be angry, to be physical.
That’s why we at the center have a … we have a room where you can be rambunctious and be safe and being physical, whatever that might be. That’s an important thing too for a girl to have ’cause these are all things that are healthy for your body, but they have to be done in a safe way. And we will have male volunteers at the center who will say, “I was … Everything was taken away. We were not allowed to talk about it.” The same was happening for girls too. Thankfully, nowadays we’re trying to educate and help people understand … I know we had one experience where this volunteer having gone through our training, started to reflect on the death of his own mom and how his dad kind of managed to … or didn’t manage to kind of parent the family and how it created a fracture really in their relationship later, and so he hadn’t seen his dad in a long time. So having gone through the training, there was that light bulb that went on that had him think, “I need to go back.” And so he booked a flight to go visit his father and so there was that reconnection, because he began to see it from his father’s side and his father trying to do the best. So that was a nice story to hear.
Dr. Lisa B.: Anything that you would like our listeners to know about the Center for Grieving children, anything that you think is particularly interesting or that you’d like to share?
Anne Heros: I think sometimes when people hear the name, Grieving Children, that they think it’s a sad place and that is not … Yes, what brings people there can be sad but children in a lot of cases experience for the first time, it’s okay to be happy again because when there’s so much sadness in a house, how can you be happy again, how can you … By coming to the center, there’s also opportunities to have those conversations and I think the other piece is that we provide a lot of services. So I encourage people to go to our website and see all the work that we do, because I think that’s one of the pieces people will say to me, “Wow, I didn’t know that you did so much.” And I think one of the other pieces is that we are there, okay, we’re not there 24/7, but we are there either on the phone or on the website to answer your questions and help you. There’s an awful lot of work that we do that does not mean you actually physically come inside the walls of the center, but we do a lot of work with a lot of different kinds of populations. We have a big refugee and immigrant program. We have a tender living care program, where we work with families who are dealing with a life threatening illness, and then of course, there’s our bereavement program.
Dr. Lisa B.: I appreciate all the work that you’ve done-
Anne Heros: Thank you.
Dr. Lisa B.: Over the last several decades now.
Anne Heros: Yeah.
Dr. Lisa B.: It must be a little hard to believe.
Anne Heros: It is hard to believe actually that there’s more behind me than there is ahead of me.
Dr. Lisa B.: Well I’m glad you’re still here.
Anne Heros: Me too!
Dr. Lisa B.: I hope you still got a few decades ahead of you still. I’ve been speaking with Anne Heros, who serves as the executive director of the Center for Grieving Children, an organization that serves grieving children, teenagers, families and young adults with peer support, outreach and education. Thank you so much.
Anne Heros: Thank you.
Speaker 1: Love Maine Radio is also brought to you by Aristelle, a lingerie boutique on Exchange Street in Portland’s Old Port, where every body is seen as a work of art and beauty is celebrated from the inside out. Shop with us in person or online at aristelle.com.
Dr. Lisa B.: You have been listening to Love Maine Radio, show number 341. Our guests have included Carol Schoneberg and Anne Heros. For more information on our guests and extended interviews, visit lovemaineradio.com. Love Maine Radio is downloadable for free on iTunes. For a preview of each week’s show, sign up for e-newsletter and like our Love Maine Radio Facebook page. Follow me on Twitter as Dr. Lisa and see our Love Maine Radio photos on Instagram. Please let us know what you think of Love Maine Radio. We welcome your suggestions for future shows, also let our sponsors know that you have heard about them here. We are happy that they enable us to bring Love Maine Radio to you each week. This is Dr. Lisa Belisle. Thank you for sharing this part of your day with me. May you have a bountiful life.
Speaker 1: Love Maine Radio is brought to you by Maine Magazine, Aristelle, Portland Art Gallery and Art Collector Maine. Audio production and original music are by Spencer Albee. Our editorial producer is Kate Gardner. Our assistant producer is Shelbi Wassick. Our community development manager is Casey Lovejoy and our executive producers are Andrea King, Kevin Thomas and Dr. Lisa Belisle. For more information on our production team, Maine Magazine or any of the guests featured here today, please visit us at lovemaineradio.com.