Comfort, #66

Valerie Jones:

Grief comes barreling back when they least expect it. We offer services when people feel they need it and they come when they feel they need it and they end when they feel they're ready to leave. We leave that up to them.

Anne Lynch:

The kids really know what they need and the important thing is just to listen to them and to ask them what do they need and take the lead from them and answer their questions as realistically as you can. And if you don't know the answer at the time, it's okay to say, you know what? I don't know. Let me think about it and I'll get back to you.

Louise Hurlbutt:

I call it lifting you up, Families sharing again where there might have been some barriers and it's pretty special. Very special.

Arlene Wing:

It used to be years ago that people would say, hospice. Hmm, what's that? And they want you to explain it. Sometimes now it's oh, hospice. And because people have experienced the comfort, the sense of not being alone, and the support that hospice brings, they're now beginning to ask for it themselves.

Dr. Lisa Belisle:

This is Dr. Lisa Belisle and you are listening to the Dr. Lisa Radio Hour and podcast show number 66, Comfort, airing for the first time on December 16, 2012 on WLOB and WPEI Radio, Portland, Maine. The holidays can be a time of both joy and sadness. This is particularly true when our families are impacted by illness and difficulty. This week we find comfort in the wise words of Anne lynch and Valerie Jones of the center for Grieving Children and Hospice Advocate Louise Hurlbut and Arlene Wing, Chief Executive Officer of the Hospice of Southern Maine. As a doctor in the community for many years, I've had the chance to interact with both of these organizations. Although I first learned about the center for Grieving Children when my young sister's fifth grade friend died suddenly of a heart condition, this friend happened to be the daughter of Ann lynch of the center for grieving children. It was an unfortunate way to learn about this organization, but I truly believe that what these people are doing is bringing light and hope into otherwise dark places in people's lives. The same can be said of hospice. Few physicians in this area would argue with the fact that hospice is a very important thing to offer end of life patients and their families. We hope that you find inspiration and comfort in our conversations with Ann lynch and Valerie Jones of the center for Grieving Children and hospice advocate Louise Hurlbut and Arlene Wing of Hospice of Southern Maine. Physical pain can be one of the things that keeps us from finding comfort in our lives. How do we deal with our physical pains? Try acupuncture. A compilation of data from 29 high quality research studies involving the use of acupuncture for back and neck pain, osteoarthritis, shoulder pain and chronic headache in almost 18,000 patients showed a statistically significant benefit. As an acupuncture and traditional Chinese medicine practitioner for many years, I've seen my patients derive great benefit from this and I look forward to working with you and helping you find comfort from the pain in your life. Call me Dr. Lisa at the Body Architect to schedule your acupuncture appointment today 207-774-2196 or visit drlisabelisle.com for more information. As we get ready for the holidays, many people are feeling joyful and hopeful and they're happy that they're going to be gathering with their families. And we certainly hope that this is what's going on in the lives of our listeners. But we also know that there's another side to it, that there are people who are are likely going to be missing family members that are no longer with them or friends or people who have just sort of left this earthly sphere, let's call it. And this is the reason that we thought it would be important to talk to people from the center for Grieving Children, an organization that's been quite active in the Portland community for many years. And it's an organization that I feel personally very connected to. Thank you for coming in and talking to us today. We have Anne lynch, executive director, and Valerie Jones, who is the bereavement coordinator for the center for Grieving Children.

Anne Lynch:

Good morning.

Valerie Jones:

Good morning.

Dr. Lisa Belisle:

Now the center for Grieving Children, it's an interesting thing for me because I, like many people, I tend to put support behind organizations I hope that I will not ever really need. So I always donate to. Well, I don't want to say it on air because I Don't want to. I'm going to knock wood as I say this, but organizations that I hope I will never need, but I know there are a lot of people who need the support of your organization. And you have a pretty personal reason for getting involved with all of this.

Anne Lynch:

Yes, I do. I lost my daughter back in 92, and it was a very sudden, sudden death. She was only in fourth grade. And so the centre came out to the school and helped support her classmates and also the other classmates of my two sons. And so that's when I first became aware of the center and so had been watching it and very much impacted by the fact when something like this happens, who is taking care of the children. So it meant a lot to me. And then when the time came for me to take my two boys and myself to the center, what really blew me away was the fact that it was a peer support model done by volunteers. The fact that people from the community would be willing to listen to you when you're in a very tender and raw place. And I thought that at some point when I was well enough, I would love to come back and volunteer, which I did. And the mission of the centre continued to call me. And when there was an opportunity on staff, I applied for a position as outreach director. And that involved going out to schools, which is something that I'm very, very close to. But then later, back in 2001, when our executive director was leaving, Gail Chanelli, I applied for the position. So I'm in the hot seat since then. It's an organization, as I said, that's very. The mission is very meaningful to me and something that I felt I couldn't be behind something I didn't believe in. It rocks you to your core when you have a loss like that. And the community that's there at the center is phenomenal.

Dr. Lisa Belisle:

How did the center for Grieving Children come to be?

Anne Lynch:

It's now 25 years old and our founder, Bill Heman started the organization back in 87 and it was in response to a loss in his own life and his. His only sister, only sibling had a nine year old daughter and his sister was diagnosed with terminal cancer. So when his sister died, he was struggling with his own feelings and he was looking around Portland for support for himself, which he could find, but he couldn't find anything for his niece. So he happened to be listening to TV and saw a piece about a place out in Portland, Oregon called the Dougie Center. And he was a stockbroker at the time and his thought was we need something like this here in Portland. So he gave up his job, he tapped into his savings, he went out to Poland, Oregon, came back and started the centre with four families and 12 volunteers. Fast forward to today, when we've got 125 volunteers and serve about 350 individuals in our peer support groups.

Dr. Lisa Belisle:

Valerie, how do children grieve differently than adults?

Valerie Jones:

Well, children are very much their feelings, and they express them not just in words, but often in actions and activities. So at the center, we give them those ways to express themselves, not just by sitting in a circle and talking, although that is some of what we do. But we have a lot of different outlets for them, such as art and drama, music and play. A lot of feelings come out during play. Children are not able to stay in a place of grief like adults are. They kind of come in and come out in waves. And we understand that. So that one minute a child can be in one place, maybe sad and telling their story, and the next minute they're off and playing. And so being able to meet them where they are is really important. And that's one of the things about the beauty of the center. We meet each child, each participant, where they are.

Dr. Lisa Belisle:

Ann, was that your experience with your sons is that they were in and out of grieving?

Anne Lynch:

Yes, they were. And for them, physical activity and sports was an important thing for them, a great avenue for them. But being boys, again, it was also a different level of expectations out of, you know, the gender aspect of grieving is definitely, definitely obvious. But I kept the subject alive, and obviously by being involved at the centre, it obviously was very, you know, vivid part of our lives. So they had moments when they wanted to talk, but it was different. It was different than how I was grieving and different to how their dad was grieving. So that was also something that the center taught me, is that we would all be different.

Dr. Lisa Belisle:

And I think that this is an important point and something that we brought up and we've talked to other guests, is that there seems to be an expectation by the greater society that people are supposed to follow some sort of timeline when it comes to grieving. I think we spoke with the Reverend Jacob Watson from the Chaplaincy Institute of Maine, and he was talking about this fact that you're supposed to follow your stages of grief and you're supposed to do it within so much time, and if you don't, then there's something wrong with you. But, Valerie, is that really reasonable to expect that people are all going to have the same follow the same timeline?

Valerie Jones:

No, it's not. And again, that's the beauty of the center, because we realize that everyone's grief, timeline, or journey, as we like to refer to it, is different. And we see families come to us, and there's such a relief for them when they find out that if they're not following some pattern, that that's okay, that whatever they're feeling at any point is okay. And oftentimes people are surprised at the fact that, you know, maybe some time has passed since the death, maybe a few years, but that grief comes barreling back when they least expect it. And they can be at the center during those times. We offer services when people feel they need it, and they come when they feel they need it, and they end when they feel they're ready to leave. We leave that up to them.

Dr. Lisa Belisle:

Well, tell me about some of your specific programs that are available.

Valerie Jones:

Okay. What we're probably best known for is our bereavement program. And we offer bereavement peer support groups for ages three through adult. We offer that three evenings a week. And the groups are broken down by ages. And what that does is it gives children the experience of being with others of similar age who have also experienced a loss. And that really reduces isolation that they make feel in other aspects of their lives, like at school or with friends or other things they do out in the community. Being with peers can be enormously healing to be able to share feelings around that. And it's the same through the adults. We offer two adult groups on each of our nights of bereavement for adults who have children in the program. And then we have to kind of adjunct groups for adults, those who have experienced the loss of a child of any age and those who have lost a spouse or partner. We also have our Tender Living Care program, which is for families who are faced with a serious illness. And they come to the center for support around that because we realize that that illness doesn't just affect the person that's ill, but the entire family dynamic. So it runs on the same type of model. It is peer support, same age groups, type of thing. And that program runs in segments so that families can choose to come because illness is so up and down. So families can choose to come for a certain segment. Maybe while their loved one is going through a treatment, they can come get some support around that. Our other program is our multicultural program, and we work with currently with two schools with children who have suffered loss on many levels. Not just loss from death, but also loss of culture and country, and sometimes Language. And we help them build a community where they can be who they need to be. And that again, reduces isolation and helps them assimilate to being in this country while being able to honor the culture in the country that they've come from.

Dr. Lisa Belisle:

Anne, it's hard for me to sit across the microphone from you without actually remembering when your daughter died, because my sister Sarah was on the soccer team with your daughter. And it was sudden.

Anne Lynch:

Yes, it was sudden.

Dr. Lisa Belisle:

And I remember taking Sarah to the wake. And this is. I think Sarah was maybe a little older, so I don't know if she was fourth or fifth grade, but I was the older sister, 10 years older, feeling like I should be responsible.

Anne Lynch:

Right.

Dr. Lisa Belisle:

And I didn't know really how to support her. I didn't really know how to support my sister through something like losing a classmate.

Anne Lynch:

Right.

Dr. Lisa Belisle:

What types of suggestions can you offer to people who are in that situation where they may not be the one who knew the child that died, but they want to support somebody who is involved?

Anne Lynch:

Well, I think by being present with them and as you did, you attended the wake with her. I think the important thing is to listen to what she wanted to do. I think if you remember back, there was a lot of children who were there and I think that kind of blew people away that. And actually these kids didn't want to move, they wanted to hang around and they wanted. And in a way it kind of, I think maybe freaked some adults out that this was, you know, this was happening. So that's what we find at the center, is that the kids really know what they need. And the important thing is just to listen to them and to ask them what do they need and take the lead from them. And so that you don't feel like you're over, you know, that you're flooding them with information. Answer their questions as realistically as you can. And if you don't know the answer at the time, it's okay to say, you know what? I don't know about that. Let me think about it and I'll get back to you. So I'm sure for you being present, you had the issue of how your sister was hurting and what that was like and the need to protect her from that pain and the scariness that it was at the time, that it was a sudden death of a 10 year old.

Dr. Lisa Belisle:

Well, that is a really important piece, is that. And even as a parent now with children who are older, and I should say that my kids have all benefited from your son's soccer instruction at Yarmouth High school and through the Yarmouth Colts program. And I know that your family was involved in starting the Colts program out in Yarmouth, the youth soccer program. I think even now there is this inclination to want to protect my children the way I wanted to protect her. You know, protect from grief, protect from sadness, protect from all the bad things and the, you know, quote, unquote bad things, quote, unquote dark things. But I'm not sure that's always the right path.

Anne Lynch:

Well, I think it's very natural. But the important thing, which is what we try to invoke, is to listen to your children, because sometimes parents do try to overprotect them and overcompensate, and the kids end up having kind of two realities. You know, there's what they're thinking and then there is what the parent or the caregiver is telling them, and that can be very confusing. So we encourage people to be open to it. It's not easy. And that's why we field over a thousand phone calls a year and help coach people and help them with how to have that conversation, because it's not an easy conversation, because you don't want to see your kid in pain.

Dr. Lisa Belisle:

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Dr. Lisa Belisle:

What about the holidays? It does seem that a lot of people are impacted by not having their loved ones around, but they aren't necessarily able to share that with the people around them who are in joyful spirits and happy moods and wrapping presents and celebrating Hanukkah. What types of suggestions can you offer, Valerie, for people who are going through this or people who are trying to support them?

Valerie Jones:

Well, I think one of the most important things is that people give themselves kind of a break. There are so many expectations around the holidays, and if people that are steeped in tradition or things, rituals that they always did, it can be really hard to kind of decipher what is it that we want to do. And I know when my husband died and my children were 12 and 17 at the time, and that first year was really hard, we had always either gone to see family or family came to see us. And that year we decided to do something entirely different. And that felt right for us. And so we encourage families to do what's right for them. But in doing that, communicate with your loved ones. They're there trying to keep things as it was, even though for the person who's grieving, it'll never be the same. So being able to say, you know, I just don't know if I'm going to have the energy for that and can I make that decision a little bit closer to the actual date? If people can kind of understand where you're coming from, it helps them be supportive and kind of know your limits. Often, you know, grief brings out physical exhaustion, emotional exhaustion, and if you add the holidays on top of that, it can just be way overwhelming. So we really encourage people to do what they feel is right for them and their families. And for some families that means starting new traditions that first year. But it really is important to talk about it and find out what's important to people and find ways to honor the person. So often people won't mention the person that died, and that can be very hurtful, especially around the holidays. So being able to speak about that, it's really important that we bring his name into the room that we remember him sometime. Engaging the Children in an activity One activity, for instance, that anyone can be involved in is making a paper chain that can go throughout the holiday season where children and family members can write memories or stories or pictures if the children are very young. And they can add to it throughout the holidays. And that keeps the person there and present for them.

Dr. Lisa Belisle:

Are your loved ones that have passed on, are they still with you in some way?

Anne Lynch:

I have times when I believe that we are in touch. You know, it could be a song that comes on the radio. It could be just there's that sense that you're close. And obviously for me, as I said already, it's how I've chosen to, to live in terms of a career. But definitely there are coincidences that happen that you say, yes, you know, that was something that, you know, we're in sync. We're thinking about one another. And that's a nice, warm, nice warm feeling. It's not a sad feeling. It's a warm, a warm feeling.

Valerie Jones:

And I feel the same way. I mean, every time I look at my boys and they have a mannerism or they remember something that their dad taught them. Like my youngest son, we were talking the other day about golf and he said, well, dad taught me how to do, do it like this. And to me, that was so special because this is a child that has never picked up a golf club since it's just not his thing. But he remembered that. And it's just amazing how mannerisms, whether it be the way they sit in a chair or something they might say, and it's just like, oh my gosh, that is coming through. And it's unbelievable to me, but it is definitely there.

Dr. Lisa Belisle:

Definitely. How can people find out more about the center for Grieving Children?

Anne Lynch:

They can go on our website, www.cgcmaine.org or call us at 775-5216.

Dr. Lisa Belisle:

And do you have a Facebook presence?

Anne Lynch:

Yes, we do. We have quite a social media presence and it's not my forte. I'm glad that I have others in the organization who love to do that. And we want to be out there for all ages and try to be in front of as many audiences as possible because, you know, we serve all ages and that's important too, that we serve the teens and the young adults.

Dr. Lisa Belisle:

Well, it has been my pleasure to spend time with you today, talking with Anne lynch, the executive director, and Valerie Jones, the bereavement services coordinator at the center for Grieving Children here in Portland. This is an important holiday topic, believe it or not. For those I hope who are listening, they now believe it. And I urge people to go to your website, your Facebook page to find out more about your organization. Maybe consider volunteering or reaching out, donating money, all kinds of different ways to get involved.

Anne Lynch:

Yes, absolutely. Volunteers are crucial to our organization.

Dr. Lisa Belisle:

Well, thank you for coming today.

Anne Lynch:

Thank you.

Valerie Jones:

Thanks for having us.

Dr. Lisa Belisle:

I'm very happy always to have with me people who come in that I know from out and about in the community and also to meet people that I don't know. So I feel like I'm in a good place today as I welcome Louise Harlman, who is the one that I do know, who is an advocate and fundraiser for Hospice of Southern Maine. And sitting with her is Arlene Wing, the CEO of Hospice of Southern Maine. Really pleased with the work that you're doing in our community to help families through a very difficult time. Thank you for coming in and talking with me about it.

Louise Hurlbutt:

You're welcome.

Arlene Wing:

You're welcome. Very nice to be here.

Dr. Lisa Belisle:

Arlene, I'm going to start with you and ask about hospice. When you and I were talking before, you mentioned that it had been an evolution. You'd noticed that it had been an evolution over time. People didn't used to know that much about hospice and they know a lot more now. For people who don't know about hospice still, what is it?

Arlene Wing:

Hospice is a program of care that provides comfort and support to people with a terminal illness and provides various types of help and education to those that are caring for them. The goal of hospice is to help people be comfortable in all ways. Not just comfortable with their physical symptoms, such as pain, but also to be comfortable socially, emotionally, spiritually. And that's why hospice provides care using an interdisciplinary team. So the team is comprised of medical focused professionals like physicians and nurses and hospice aides, but also social workers and chaplains. And we always have many volunteers that provide services, support as well. And the volunteers perform different roles in providing companionship and care and respite when they visit. Out in the home. You could think of it similar to what a friendly, caring neighbor might do. To come and sit with someone or do some tasks, or sometimes it's something like play a game of cards or just to be there and be a supportive presence.

Dr. Lisa Belisle:

Louise, why did hospice come into your sphere of thinking? How did it become important to you?

Louise Hurlbutt:

Well, in 2000, my mother passed away at Huntington Common in Kennebunk, and she. We had hospice come in in the last two weeks to help us all out. I mean, she was getting nursing care, but it was the emotional journey that led us to understand death, which often we don't understand until it's apparent the spiritualness of it and just that supportiveness. And about a month after mom passed away, one of the staff came to me and said, would you be. You have such a strong feeling about hospice and would you be willing to help me stay, start finding money so that we can build a hospice facility in Maine? And when I looked into it, I realized that Maine rated next to last in the United States for hospice care. And I had moved to Maine from Philadelphia, where hospice care was pretty active. And it sort of became my journey for my main to help. And we started on this journey and raising money, and in three years we raised, you know, 3 million and we could make. And then other people just started. And then it evolved. And it was a very passionate thing for me to do. And it was sort of. I wanted to get involved in Maine. We had just moved here. And it was a way. It was something that I truly believed in. So that was my journey through it. And we have wonderful people like Arlene who lead us through it. In my own journey, I've had cancer after we started hospice. And it's a great sort of relief to know it's there, that you have a place in the end that's going to Take care of you in a very spiritual and giving family counseling and children and just the help you need. It's like alleviated the fear of death. For me, it's very interesting. Death is very different for everybody. And so it's been a wonderful journey in that and to see it grow. If you read in the Portland Harold Press, 75 in the obituary, 75% of people, people die at the Gosnell Memorial Hospice House. And it's really like, oh my God, this is amazing. It's so needed. And when we started hospice, and I think Arlene can address this more, we had to educate the medical community, you know, the doctors, and we didn't have the insurances and all that. And that journey in the last 10 years, 10 years has been pretty incredible for what now is provided in insurances and Medicare. Don't you think, Arlene?

Arlene Wing:

Oh, very much. It's been quite an evolution. It's been several years ago now. I think we're getting close to 10 years ago that the main Hospice council got a grant from the Robert Wood Johnson Foundation. And part of that grant allowed us to to conduct a survey around the state of Maine concerning people's beliefs about various end of life issues. But one of the questions asked, do you know about hospice? And it really surprised us then because we thought by that time we'd made a good amount of progress in Maine. And about 50% of people said they didn't even know what hospice was. And there has been a change. Now, those of us that work in hospice over the last year to two, we've been talking to each other about the change or the shift that has occurred in that when we'll tell someone what we do for work and they say, oh, hospice. It used to be years ago, even more than two to five years ago, that people would say, hospice. Hmm, what's that? And they want you to explain it. Sometimes now it's, oh, hospice. They know what it is. And they almost always have a story about having received care. With us, it's so different. And because people have experienced what Louise described, the comfort, the sense of not being alone, and the support that hospice brings, they're now beginning to ask for it themselves. And people don't often realize that they can call hospice directly to request services, and then we can take it from there to call their physician for them and do what it takes to make it possible for them to enter into a hospice program. So it really has transitioned.

Dr. Lisa Belisle:

Why do you think that people feel so alone when they have cancer or when they have A serious illness. Why do you think that people are so afraid of not being cared for?

Louise Hurlbutt:

I think there's a difference. I think the medical community here in Maine takes wonderful care during your cancer treatments while you have cancer. But I think all of us who are terminally ill or ill, you know, have this fear of the. The very end. Will I be able to tolerate the pain? Will I be able. It's a frightening spot for a lot of people. And I think that you, when you have that. Of course, a lot of us have beliefs, religious beliefs, which help us through those journeys. But there's something extra with hospice, and it's gathering. I had a dear friend whose mother was dying in the hospital, and they told him that she only had two weeks. And I said, you can't leave her in the hospital. Do you know about hospice? And he said, well, I've heard about hospice, but I'm really not too sure what they do. I said, you've got to experience it. You've got to bring your mom home to your house, let her look out at the ocean, let your brothers check her grandchildren come and be with her. And everybody experienced the deaths, but experience the death in a wonderful way. And I can remember he made the first step with his physician and got her home from the hospital to his house. And the first night at midnight, I got a text with a picture of the grandchildren in bed with the grandmother, reading a story with the grandmother who, yes, is dying. But she was still alive. She was still verbal and the biggest smile. And, you know, the message to me was, I can't thank you enough for introducing me to hospice. And I think people don't really know that journey. I call it lifting it, lifting you up, helping the family. Hospice gets you through certain tough times in the end. And families sharing again where there might have been some barriers. And it's pretty special, very special.

Arlene Wing:

Death comes to each and every one of us. That's one thing that we all have in common. And a disease will progress. Death will. Will come. Being in hospice won't change that, but it can make that time much more comfortable. It can bring a team of supportive, well trained, expert individuals around you to help you manage with all that's going on. And there is a lot going on. And I was struck by Louise's words when she said she no longer felt afraid of dying. And to me, that's one of the most powerful things and one of the biggest gifts that a hospice experience brings to people and families. And I've had so many family members say that to me. And dying patients say that to me, that having that experience changed that for them. So when you think about that, one of our biggest fears, if not our biggest fear, is being taken down or taken away is very huge because people know they can be comfortable and they don't have to be alone. And it's a wonderful gift for us to be able to give to others.

Dr. Lisa Belisle:

Do you think that medicine, the way that it's set up now, where we are trying to cure things and we're trying to look for answers and we're trying to prevent the end from happening, do you think that this is maybe caused some of the problems with dealing with death and dying?

Arlene Wing:

There's always that possibility, but I look at it more as we need to become really good at the transition and learn when it's time to change. And one of the things that is another barrier is that often people think of that transition time or that change, change from trying to cure the underlying disease and changing to trying to keep all of the symptoms under control and keeping the person comfortable. We tend to think of that as going from doing everything to doing nothing. And it's not. It's going from doing everything possible to cure the disease to very aggressively treating any symptoms that arise and keep keeping the person comfortable. It's different. It doesn't mean giving up. It doesn't mean abandonment. It means something different. And so for people to get good at making that shift, I think is what needs to happen, because they're both very important.

Dr. Lisa Belisle:

I've seen a rise in the number of medical doctors who are going into palliative care, and I think this has become more of a recognized field. Are you seeing that in your work in Maine?

Arlene Wing:

Yes. We're having more and more physicians sit for their boards to become hospice and palliative care certified. Back when I was first working in hospice, there were quite a few years when we only had one in our state that was board certified. So we're coming a long way. There is growing interest and for many physicians, once they experience experience that practice, if it is something that they are innately drawn to, they love it. And we have had many physicians come to us expressing interest in doing that work with us, which we feel very honored by because the physicians are typically quite a scarce commodity in our healthcare professional realm. So I think that is a great indicator that there is great interest in the work of hospice.

Dr. Lisa Belisle:

Louise, you talked about the spiritual aspects of transitioning with your mother and also in your own life. Is this something that you ever felt you could address with your own physician or your health care providers or your mothers?

Louise Hurlbutt:

I think today we that is cancer is now a managed care disease and we are very fortunate that medicine has allowed many of us to live much, much longer who have had cancer or other diseases. And I think maybe 20 years ago it wasn't, you wouldn't have discussed it. But today I discuss it very openly. I mean, I know how I don't want to be prolonged. It's accepting where you are in your life. And I think Arlene made a really good point. Some people have said, oh, isn't hospice about giving up? Won't my mother know that we're giving up on her? But it's making her comfortable. In the end, there's no more that the medical profession can do for that individual. So it's taken them to another level. And I think when one has spirituality added to it, it really is raising you up. And I like to look at it that way, that it is another form of a spiritual. Some people wouldn't, but I do. And it's, you know, I think I really am excited to see where the medical care profession is today than 10 years ago. You know, on hospice care, does it

Dr. Lisa Belisle:

matter what type of religious background or spiritual religious affiliation somebody has or a family has when they approach hospice for care?

Arlene Wing:

No, absolutely not. One of the things that's very important in the world of hospice is that we want to honor people where they are for who they are, try to learn what their wishes are and do our best to have those wishes come to fruition in this last part of their life. There would never be any expectation that someone had to be something or believe something. We meet people where they are and honor their beliefs and their ethnicity and their age and background and gender and whatever it is. One of the things that we work very hard to do is learn how to be there. And it sounds simple, but we do A lot of training around that, where we work to be able to quiet our own agendas and our own thoughts and be present with someone and truly listen and allow them to process with us. Because when you think about it, emotionally, spiritually, socially, people are doing a huge amount of work during this time. Socially, they're saying goodbye to everyone they know. Emotionally, people universally experience emotions and of all different sorts, as do the people that love them. And spiritually, people universally deal with spiritual questions, things like, what did my life mean? Where am I going after I die? And so for us to have the privilege of being there and helping them through that is very much of an honor to us. And we don't want to get in the way of. Of their beliefs and where they are, but simply to be there to support them in that.

Dr. Lisa Belisle:

Louise, you managed to, you said, raised $3 million in three years for the Gosnell house. And I know you had a major donor that was very invested in bringing this thing to reality. What do you think it is about hospice and the idea of a hospice house that causes people to want to give?

Louise Hurlbutt:

Well, I think they see a need in the community, number one, and our major donors. In the beginning, I want to correct one thing. I didn't raise 3 million myself. We raised it all, a whole group of us. I did do 1.5, but, you know, it was because of our wonderful donor. But I think, you know, they. It's a personal commitment, too. It isn't just about the whole community. They understand what hospice is all about. And the people that we went to, we didn't have to sell it. We said, you know, this is it. We don't have it in Maine. We need to build this. We need to have this for our community and for you and for everybody as a state. And that really, that was the approach. You know, I had never raised money before, you know, and it was very hard for me to ask. But once I got going and you believe in it and they take it from there, they understand it. And people were so generous. And I think what really, really now it just continues on. You know, you see it in the paper, in the obituaries, and people who probably would have given money to their alma mater or something, who say donations to hospice because they realize how important it is to, you know, send funds to it. And it just keeps perpetuating itself. And, you know, we want to do more in hospice care. We want to have more facilities and education facilities and bereavement center. And so, you know, it's always ongoing for Fundraising.

Anne Lynch:

Yeah.

Dr. Lisa Belisle:

And I think that's an important point because I don't want people who are listening to think, oh, we already have a house, lots of people are donating. I mean, we went from being almost last or last in the nation as far as hospice availability to somewhere in the middle, from what I understand. But that still leaves us only somewhere in the middle. There's plenty of room to move and death is going to happen to each of us. So how can people learn more about donating to Hospice of Southern Maine?

Arlene Wing:

They can call us at 207-289-3640. They can also go on our website. And there are many areas of informational or many informational sections on the website. And there is a way to make a donation online there on the website as well.

Dr. Lisa Belisle:

And the other piece that I wanted to make sure people understand is that there is a huge need for hospice volunteers. And there is a very specific hospice training that people go through in order to become a volunteer.

Arlene Wing:

That's right. We're always looking for people who are interested in volunteering with us. There are many different ways to volunteer. Some people choose to work with helping patients and families directly. Some like to volunteer with events and special services like our memorial services. Some like to do administrative roles like help with organizing things in the office, for example. And in order to volunteer, there is a 40 hour training that people would go through that helps to give them the tools and the skills and the understanding that they need to be effective in their role.

Dr. Lisa Belisle:

So what you've described is this helping people to transition through the end of their lives. Are there certain lessons that people have learned or have you heard of specific civic stories that people have shared with you about the types of deeper meaning that they might have found through hospice?

Arlene Wing:

There are so many wonderful, transformative, life changing stories that we hear. And that's where the reward for doing the work of hospice comes in. And I can think of one story that pops to my mind immediately. A man that back when I was doing hospice home visiting as a nurse myself, and I was managing a program at that time, one of the nurses came in and was saying that this gentleman that she was visiting was in great distress and despair. And this is a spiritual issue. He was saying that he felt like his life had had no meaning, that it had meant nothing. And she knew something about what his wife had told her about his life and what it had meant to her and her children. And she asked his permission to tell his wife how he was feeling. And he said yes. You know, that Was okay. She shared it. And then the next visit, when she went back, he was really transformed. He had gone from seeming to be very anxious and depressed to peaceful and was able to have real healing and change there in his view of himself and his life and come to peace. Oftentimes the hospice team can help relationships also, where there might be a need to forgive or be forgiven, to help to process some difficulty in a relationship. And I remember another story where oftentimes, when people are dying, we have some rules of thumb that we use about how we know when people are getting close to death. And one of them is when a person is taking in no food and no fluid, it's usually around two days, around 48 hours that they can last with no intake at all. And we had a patient, and she was not taking in anything, and it was getting to be a couple of weeks, and she was getting really agitated and uncomfortable. And the nurse asked the family if they could think of anything that might be unresolved for her that we could help her with, even though she was unresponsive and unable to talk at that time. And they said, well, there is this relationship with this family member, but they're way, way away. They wouldn't be able to get here. And so we said, well, would you be willing to just try if we got that person on the phone and put it up to her ear, even though she can't talk and see if that might help? And they did that. Got the person on the phone, that person was willing to talk, said what they had to say, the patient had the phone up to her ear, and then she quieted and died peacefully just a little while after that. So it was needed to bring resolution and peace. So there are so many stories like that, and as a hospice team, that's where we see healing happen. Yes, the physical body's dying, but there's still a lot that can happen in those other domains, and it's a privilege to be able to assist with that, help someone, say goodbye, say I forgive you, whatever it might be.

Dr. Lisa Belisle:

Louise, do you have any words of wisdom for. For people who might be going through this sort of transition during the holiday season?

Louise Hurlbutt:

I think it's really important for families to communicate and talk about death. Death is always harder in the Christmas holidays, Thanksgiving holidays, but the more you talk it out as a family, the inevitable. And I think it's important to bring children into it. Often. When my children were really young, we didn't sort of bring them into the dying bed. Oh, don't let the child see it, but now we do. And it's so important for children to understand death and to say goodbye and to understand that loss. And I think spiritually it heals, it helps heal and it bonds a family if it can be done.

Dr. Lisa Belisle:

Well, I'm so happy that you've taken the time to come and talk with me today and spend time with me talking about hospice. We've been with Louise Hurlbut, an advocate, and we'll call you a fundraiser. But mostly I think you're just an advocate for Hospice of Southern Maine and also Arlene Wing, who is the Chief Executive Officer of Hospice of Southern Maine. I appreciate your time and your willingness to bring this important, important work to the world.

Louise Hurlbutt:

Thank you.

Arlene Wing:

Thank you very much.

Louise Hurlbutt:

Thank you.

Dr. Lisa Belisle:

You have been listening to the Dr. Lisa Radio Hour and podcast show number 66 comfort. Our guests have included Ann lynch and Valerie Jones of the center for Grieving Children and Hospice Advocate Louise Hurlbut and Arlene Wing, Chief Executive Officer of Hospice of Southern Maine. For more information on our guests, visit drlisabelisle.com the Dr. Lisa Radio Hour and Podcast is downloadable for free on itunes. For a preview of each week's show, sign up for our newsletter and like our Dr. Lisa Facebook page. You can also follow me on Twitter and D O C T O R Lisa and read my take on health and well being on The Bountiful Blog bountifulpath.com We love to hear from you, so please let us know what you think of our show and if you have suggestions for future shows. Also let our sponsors know that you have heard about them here. Tom Shepard of Shepherd Financial, Beth Schisler of CBAGS, Dr. John Herzog of Orthopedic Specialists, Marcy Booth of Booth Financial and Mike LePage and Beth Franklin of Re Max Heritage are not only sponsors but personal friends of mine. I'm privileged that they enable me to bring the Dr. Lisa Radio Hour to you each week. This is Dr. Lisa Belisle hoping that our show will inspire a sense of comfort in your day. Thank you for making us a part of your world. May you have a bountiful life.

Anne Lynch:

Sam.