Transcription of Comfort, #66
Male: You’re listening to the Dr. Lisa Radio Hour and Podcast recorded at the studios of Maine Magazine in Portland, Maine. Show summaries are available at doctorlisa.org. Download and become a podcast subscriber of Dr. Lisa Belisle through iTunes. See the Dr. Lisa website or Facebook page for details.
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Lisa: This is Dr. Lisa Belisle and you’re listening to the Dr. Lisa Radio Hour and Podcast show number 66, Comfort and for the first time on December 16th, 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 Hurlbutt 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. I first learned about the Center for Grieving Children when my young sister’s 5th grade friend died suddenly of a heart condition. This friend happened to be the daughter of Anne 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 peoples’ 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 Anne Lynch and Valerie Jones of the Center for Grieving Children and hospice advocate Louise Hurlbutt 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 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 doctorlisa.org 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 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. 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 Services Coordinator for the Center for Grieving Children.
Anne: Morning.
Valerie: Good morning.
Lisa: Now The Center for Grieving Children it’s an interesting thing for me because like many people I tend to put support behind organizations I hope that I will not ever really need that I always donate to but I don’t want to say it out yet because well 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. You have a pretty personal reason for getting involved with all of this.
Anne: Yes I do. I lost my daughter back in 1992 and it was a very sudden death. She was only in 4th grade and so the center came out to the school and helped support her classmates and also the other classmates of my 2 sons. That’s when I first became aware of this center and so had been watching and very much impacted by the fact when something like this happens who is taking care of the children. It meant a lot to me and then when the time came for me to take my 2 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 some people from the community would be willing to listen to you when you’re in a very tender and raw phase and I thought that at some point, when I was well enough I would love to come back and volunteer which I did.
The mission of the center 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 grateful too but then later back in 2001 when our Executive Director was leaving, Gail Schnaley, I applied for the position so that I’m in the hot seat since then. It’s an organization that has had a 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. The community that’s there at the center is phenomenal.
Lisa: How did the Center for Grieving Children come to be?
Anne: It’s now 25 years old and our founder Bill Hemmens started the organization back in ‘87 and it was in response to a loss in his own life when his only sister, only sibling, had a 9-year-old daughter and his sister was diagnosed with terminal cancer. 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. He happened to be listening to the TV and saw a piece about a place out in Portland, Oregon, called The Dougy Center.
He was a stockbroker at the time and his thought was we need something like this here in Portland. He gave up his job. He tapped into his savings. He went out to Portland, Oregon, came back and started the center with 4 families and 12 volunteers. Fast forward to today, we have got 125 volunteers and serve about 350 individuals in our peer support groups.
Lisa: Valerie how do children grieve differently than adults?
Valerie: Children are very much with their feelings and they express them not just in words but also in actions and activities. 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 1 minute the child can be in one place maybe sad and telling their story and the next minute they’re off and playing. Being able to meet them where they are is really important and that’s one of the things about the beauty of this center, we meet each child, each participant where they are.
Lisa: Anne was that your experience with your sons, was that they were in and out of grieving?
Anne: Yes they were. 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, the gender aspect of grieving is definitely obvious. But I kept the subject alive and obviously by being involved at the center, it was obviously was a very vivid part of our lives. 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. That was also something that the center taught me is that we would all be different.
Lisa: I think 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 in grief and you’re supposed to do 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: No it’s not. Again that’s the beauty of the center because we realize that everyone’s grief timeline or journey, that we like to refer to it, is different. 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 than that’s okay. That whatever they’re feeling at any point is okay. Often times people are surprised at the fact that maybe some time has passed since the death, maybe a few years but that grief comes barreling back when they least expect it. 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.
Lisa: Well tell me about some of your specific programs that are available.
Valerie: Okay. What we’re probably best known for is our Bereavement Program and we offer bereavement peer support groups for ages 3 through adult. We offer that three evenings a week and the groups are broken down by ages. 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 may 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. 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 two kind of adjunct groups for adults those who’ve experienced the loss of a child of any age and those who’ve lost a spouse or partner.
We also have our tender loving 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 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 may be while their loved one is going through a treatment. They can come and 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. 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.
Lisa: 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.
Anne: That’s right.
Lisa: With your daughter and it was sudden.
Anne: Yes.
Lisa: I remember taking Sarah to the wake, and this is, I think Sarah was may be a little older so I don’t know if she was fourth or fifth grade. I was the older sister, 10 years older, feeling like I should be responsible.
Anne: Right.
Lisa: 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: Right.
Lisa: 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 in loss?
Anne: Well I think by being present with them and as you did, you attended the wake with her. I think an 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. 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 happening. 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 so that you don’t feel like you are over…that your 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.” I am 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. The scariness that it was at that time that it was a sudden death of a 10-year-old.
Lisa: That is … a really important piece is that, 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 in Yarmouth High School and through the Yarmouth Colt’s Program, I know that your family was involved in starting the coach program, a Yarmouth youth soccer program. I think even now there is this inclination to want to protect my children though I wanted to protect her, protect from grief, protect from sadness, protect from all the bad things, “bad things”, “dark things” but I’m not sure that’s always the right path.
Anne: 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. 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. 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 have coached people and helped 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.
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Lisa: You are on the Dr. Lisa radio hour and podcast. We have long recognized the link between health and wealth. Here to speak more on the topic is Tom Shepard of Shepard Financial.
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Lisa: 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 unwrapping 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: Well I think one of the most important things is that people give themselves kind of a break. There’re so many expectations around the holidays and if people kind of are seeped in tradition or rituals that they always did, it can be really hard to kind of decipher what is that we want to do. I know when my husband died and my children were 12 and 17 at that 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 are there trying to keep things as it was even though for the person who’s grieving, it will never be the same. Being able to say, “You know I just don’t know if you’re 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. Know your limits. Often, 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. 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. 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. Being able to speak about that it’s really important that we bring his name into the room, that we remember him. Sometimes 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 in present for them.
Lisa: Are your loved ones that have passed on, are they still with you in some way?
Anne: I have times when I believe that they’re in touch. It could be a song that comes on the radio. It could be just the sense that you’re close and obviously for me as I said already it’s how I’ve chosen to live it in terms of a career but definitely there are coincidences that happen that you say, “Yes.” That was something that, we’re in sync, we’re thinking about one another. That’s a nice warm feeling. It’s not a sad feeling. It’s a warm feeling.
Valerie: I feel the same way, every time I look at my boys and they have a mannerism or they remember something that their Dad taught them. Like my younger son was, we were talking the other day about golf and he said, “Well, Dad taught me how to 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. It’s just amazing how mannerisms, whether it be the way they sit in a chair or something they might say… It’s like, “Oh my gosh! That is coming through” and it’s unbelievable to me, but it is definitely there. Definitely.
Lisa: How can people find out more about the Center for Grieving Children?
Anne: They can go on our website www.cgcmaine.org or call us at (207) 775-5216.
Lisa: Do you have a Facebook presence?
Anne: Yes we do. We have quite a social media presence and it’s not my forte. I’m glad that I have others at the organization who love to do that. We want out to be out there for all ages and try to be in front of as many audiences as possible because we serve all ages and that’s important too that we serve the teams and the young adults.
Lisa: 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 were listening that they now believe it. I urge people to go to your website to your Facebook page to find out more about your organization, may be consider volunteering or reaching out, donating money, all kinds of different ways to get involved.
Anne: Yes. Absolutely. Volunteers are crucial to our organization.
Lisa: Well thank you for coming today.
Anne: Thank you for having us.
Valerie: Thank you for having us.
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Lisa: 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 am in a good place today as I welcome Louise Hurlbutt 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. I’m 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: You’re welcome.
Arlene: You’re welcome. Very nice to be here.
Lisa: 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’ve noticed that it had been an evolution over time. People didn’t used to know that much about hospice then they know lot more now. For people who don’t know about hospice still, what is it?
Arlene: Hospice is a program of care that provides comfort and support to people with a terminal illness and provides of various types of health 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.
The team is comprised of medical-focused professionals like physicians and nurses and hospice aides, but also social workers and chaplains. We always have many volunteers that provide support as well. Volunteers perform different roles in providing companionship and care and respite. When they visit out in the home, it’s, you could think of it similar to what a friendly caring neighbor might do to come and sit with someone or do some tasks for, sometimes something like play a game of cards or just to be there and be a supportive presence.
Lisa: Louise, why did hospice come into your sphere of thinking? How did it become important to you?
Louise: Well, in 2000, my mother passed away at Huntington Common in Kennebunk. We had hospice come in, in the last two weeks to help us all out. 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 spirituality of it, and just that supportiveness. 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 start finding money so that we can build a hospice facility in Maine?”
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. It sort of became my journey for my mother to help and we started on this journey in raising money. In 3 years, we raised 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. It was sort of I wanted to get involved in Maine. We had just moved here and it was something that I truly believed in. That was my journey through it. 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 that it’s there and 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 alleviated the fear of death for me. It’s very interesting. Death is very different for everybody. It’s been a wonderful journey in that and to see it grow. If you read in the Portland Press Herald, 75 … in the obituary, 75% of people die at the Gosnell Memorial Hospice House and it’s really like, “Oh my God! This is amazing. It’s so needed.”
When we started hospice, and I think Arlene can address this more, we had to educate the medical community and the doctors and we didn’t have the insurances and all that and that journey in the last 10 years has been pretty incredible for what now is provided in insurance and Medicare. Don’t you think, Arlene?
Arlene: Very much. It’s been quite an evolution. It’s been several years ago now. I think we are getting close to 10 years ago that the Maine Hospice Council got a grant from the Robert Wood Johnson Foundation and part of that grant allowed us to conduct a survey around the state of Maine concerning people’s beliefs about various end-of-life issues. One of the questions asked, “Do you know about hospice?” It really surprised us then because we thought by that time, we’ve made a good amount of progress in Maine and about 50% of people said they didn’t even know what hospice was. There has been a change.
Now, those of us that work in hospice over the last year to 2 we’ve been talking to each other about the change or the shift that has occurred in that one will tell someone what we do for work and they say, “Oh hospice.” It used to be years ago, even more than 2 to 5 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 we described the comfort, the sense of not being alone and the support that hospice brings, they’re now beginning to ask for it themselves.
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. It really has transitioned.
Lisa: 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: 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. I think all of us who are terminally ill or ill, you know, have this fear of the very end, will I be able to tolerate the pain, will I be able … it’s a frightening thought for a lot of people. I think that when you have that … Of course a lot of us have 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 2 weeks. I said, “You can’t leave her in the hospital. Do you know about hospice?” He said, “No I’ve … I have heard about hospice but I’m really not 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 brother’s children, her grandchildren come and be with her and everybody experience the death but experience the death in a wonderful way.
I can remember he made the first step with this physician and got her home from the hospital to his house. 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. The biggest smile and the message to me was, “I can’t thank you enough for introducing me to hospice.”
I think people don’t really know that journey. I call 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: 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 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. 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 hospice experience brings to people and families.
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. When you think about that one of our biggest fears if not our biggest fear 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.
Lisa: Do you think that medicine the way that it is set up now where we are trying to cure things and we are trying to look for answers and we are trying to prevent the end from happening, do you think that this has maybe caused some of the problems with dealing with death and dying?
Arlene: 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. One of the things that is another barrier is that often people think of that transition time or that 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 keeping the person comfortable. It’s different. It doesn’t mean giving up. It doesn’t mean abandonment. It means something different. For people to get good at making that shift I think is what needs to happen because they’re both very important.
Lisa: 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: Yes. We’re having more and more physicians per their boards 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. We are coming a long way. There is growing interest and for many physicians once they experience that practice if it is something that they’re innately drawn to, they love it. 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. I think that is a great indicator that there is a great interest in the work of hospice.
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Lisa: Louise, you talked about spiritual aspects of transitioning with your mother and also in your own life. Is it something that you ever felt you could address with your own physician or your healthcare providers or your mother’s?
Louise: I think today cancer is now a managed care disease. We are very fortunate that medicine has allowed many of us to live much, much longer who have had cancer or other diseases. I think maybe 20 years ago it wasn’t, you wouldn’t have discussed it, but today I discuss that very openly. I don’t want it to be prolonged. It’s accepting where you are in your life.
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. It’s taking them into another level. 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 spirituality. Some people wouldn’t but I do. I really am excited to see where the medical care profession is today than 10 years ago on hospice care.
Lisa: Does it matter what type of religious background or spiritual religious affiliation somebody has or family has when they approach hospice for care?
Arlene: 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 things that we work very hard to do is learn how to be there. 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 of all different sorts as do the people that love them. Spiritually, people universally deal with spiritual questions. Things like what did my life mean? Where am I going after I die? For us to have the privilege of being there and helping them through that is very much of an honor to us. We don’t want to get in the way of their beliefs and where they are but simply to be there to support them in that.
Lisa: Louise, you managed to, you said, raise 3 million dollars in three years for the Gosnell House and I know you had a major donor that was very interested in bringing that 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: Well I think they see a need in the community, number 1, and our major donors in the beginning … I want to correct one thing. I didn’t raise 3 million myself. We raised it, a whole group of us. I did do 1.5 million but it was because of our wonderful donor. I think that it’s a personal commitment too. It isn’t just about the whole community. They understand what hospice is all about. The people that we went to, we didn’t have to sell it. We said, “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.” That really, that was the approach.
I have never raised money before. It was very hard for me to ask but once I got going in and you believe in it, they take it from there. They understand it. People were so generous. I think what really now … it just continues on. You see it in the paper in the obituaries. People who probably would have given money to their alma mater or something you say donations to hospice because they realize how important it is to send funds to it and it just keeps perpetuating itself. We want to do more in hospice care. We want to have more facilities, education facilities, and a bereavement center. It’s always ongoing for fundraising.
Lisa: Yes. I think that’s an important point because I don’t want people who are listening to think oh, we already have a house here. Lots of people are donating. 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. How can people learn more about donating to Hospice of Southern Maine?
Arlene: 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.
Lisa: The other piece that I wanted to make sure people understand is that there is a huge need for hospice volunteers and there’s a very specific hospice training that people go through in order to become a volunteer.
Arlene: 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. 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.
Lisa: What you described is this “helping people to transition through the end of their lives.” Are their student lessons that people have learned or have you heard of specific stories that people have shared with you about the types of deeper meaning that they might have found through hospice?
Arlene: 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. 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 or 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.
She knew something about what his wife had told her about his life and what it had meant to her and her children. She asked his permission to tell his wife how he was feeling and he said, “Yes, 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.
Often times the hospice team can help relationships also where they might be a need to forgive or be forgiven to help to process some difficulty in a relationship and I remember another story where often times when people are dying, we have some rules of thumb that we use about how we know when people are getting close to death. One of them is when a person is taking in no food and no fluid. It’s usually around 2 days, around 48 hours that they can last with no intake at all.
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.
They said, “Well, there is this relationship with this family member but they are way away, they wouldn’t be able to get here.” 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 if 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.
There are so many stories like that. As a hospice team, that’s where we see healing happen. Yes, the physical body is 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.
Lisa: Louise, do you have any words of wisdom for people who might be going through the sort of transition during the holiday season?
Louise: I think it’s really important for families to communicate and talk about death. Death is always hard. Of course in the Christmas Holidays, Thanksgiving Holiday, 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. I think spiritually it heals. It helps heal and it bonds a family if it can be done.
Lisa: 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 Hurlbutt 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 work to the world.
Louise: Thank you.
Arlene: Thank you very much.
Louise: Thank you.
Lisa: You’ve been listening to the Dr. Lisa radio hour and podcast, show number 66. Comfort. Our guests have included Anne Lynch and Valerie Jones of the Center for Grieving Children and Hospice Advocate Louise Hurlbutt and Arlene Wing, Chief Executive Officer of Hospice of Southern Maine. For more information on our guests, visit doctorlisa.org. 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 Pinterest, doctorlisa, and read my take on health and well being on The Bountiful Blog, bountiful-blog.org.
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