Podcasts about funeral consumers alliance

Chris Palmer is an author, speaker, wildlife filmmaker, conservationist, educator, professor, and grandfather. He dedicated his professional career to conservation but now devotes his life to end-of-life activism. Bloomsbury will publish his 10th book, Achieving a Good Death: A Practical Guide to the End of Life, on October 1, 2024. He is a trained hospice volunteer and founded and runs an aging, death, and dying group for the Bethesda Metro Area Village. He serves as Vice Chair of the Board of Montgomery Hospice & Prince George's Hospice (MHI), is vice president of the Board of the Funeral Consumers Alliance of Maryland & Environs (FCAME), and serves on the Advisory Council for the Maryland Office of Cemetery Oversight (OCO). He also serves on the Boards of Final Exit Network, Hemlock Society of San Diego, and Funeral Consumers Alliance. He is on the Bethesda Metro Area Village Board and, until recently, was a Board member of the Green Burial Association of Maryland. Chris and his wife, Gail Shearer, created and funded the “Finishing Strong Award” with the Washington Area Village Exchange (WAVE) to encourage villages to hold more discussions about end-of-life issues. WAVE is the largest regional village organization in the nation. He frequently gives presentations and workshops to community groups on aging, death, and dying issues. Chris is also president of the MacGillivray Freeman Films Educational Foundation, which produces and funds IMAX films on science and conservation issues. MacGillivray Freeman Films is the world's largest and most successful producer of IMAX films. For over thirty-five years, he spearheaded the production of more than 300 hours of original programming for prime-time television and the IMAX film industry, which won him and his colleagues many awards, including two Emmys and an Oscar nomination. He has worked with Robert Redford, Paul Newman, Jane Fonda, Ted Turner, and many other celebrities. His IMAX films include Whales, Wolves, Dolphins, Bears, Coral Reef Adventure, and Grand Canyon Adventure. During his filmmaking career, he swam with dolphins and whales, came face-to-face with sharks and Kodiak bears, camped with wolf packs, and waded hip-deep through Everglade swamps. His books include Finding Meaning and Success: Living a Fulfilled and Productive Life, published by Rowman & Littlefield in 2021. Proceeds from all of Chris's books fund scholarships for American University students. Starting in 2004, Chris served on American University's full-time faculty as Distinguished Film Producer in Residence until his retirement in 2018. While at AU, he founded and directed the Center for Environmental Filmmaking at the School of Communication. He also created and taught a popular class called Design Your Life for Success. Chris and his wife, Gail, have lived in Bethesda, Maryland, for nearly 50 years and raised three daughters. They now have nine grandchildren. Chris was a stand-up comic for five years and has advanced degrees from London and Harvard. He has jumped out of helicopters, worked on an Israeli kibbutz, and was a high school boxing champion. Chris is currently learning to juggle, draw, dance, play tennis, and play the piano. He loves standing on his hands for exercise, keeps a daily gratitude journal, and has a 30-page personal mission statement. More information on Chris: Chris's filmmaking career began in 1983 when he founded National Audubon Society Productions, a nonprofit film company and part of the National Audubon Society, which he led as president and CEO for eleven years. In 1994, he founded National Wildlife Productions, a nonprofit multimedia company and part of the National Wildlife Federation, which he led as president and CEO for ten years. His first two published books were on wildlife filmmaking: Shooting in the Wild in 2010 and Confessions of a Wildlife Filmmaker in 2015. They were followed by Raise Your Kids to Succeed: What Every Parent Should Know in 2017 and Now What, Grad? Your Path to Success After College (First Edition in 2015 and the Second Edition in 2018). In 2019, he wrote College Teaching at its Best: Inspiring Students to be Enthusiastic, Lifelong Learners, and in 2021, he wrote Finding Meaning and Success: Living a Fulfilled and Productive Life. Rowman & Littlefield published his last five books. His next book, for Bloomsbury Publishing, is Achieving a Good Death. Bethesda Communications Group published Love, Dad in 2018, a 700-page book of his letters to his daughters, and Open Heart: When Open-Heart Surgery Becomes Your Best Option in 2021, a book co-written with his daughter Christina (a family doctor). Chris and Christina have written half a dozen books for children on health-related issues. Chris gives pro bono presentations and workshops on various topics, including how to live a meaningful and successful life, aging well, achieving a good death, living well to die well, medical aid-in-dying, decluttering and death cleaning, completing advance directives, writing memoirs, composing legacy letters and ethical wills, funeral planning, green ways of body disposition, and hospice care. In 2015, Chris spoke on wildlife filmmaking at TEDxAmericanUniversity. While teaching at AU, he was a stand-up comedian and performed regularly in DC comedy clubs for five years. In 2017, he founded and now directs a group on aging and dying well as part of the Bethesda Metro Area Village, where he serves as a Board member. Chris was honored with the Frank G. Wells Award from the Environmental Media Association and the Lifetime Achievement Award for Media at the 2009 International Wildlife Film Festival. In 2010, he was honored at the Green Globe Awards in Los Angeles with the Environmental Film Educator of the Decade award. In 2011, he received the IWFF Wildlife Hero of the Year Award for his “determined campaign to reform the wildlife filmmaking industry.” In 2012, he received the Ronald B. Tobias Award for Achievement in Science and Natural History Filmmaking Education. In addition, he received the 2014 University Faculty Award for Outstanding Teaching at AU, the 2015 University Film and Video Association Teaching Award, and the 2015 Lifetime Achievement Award at the International Wildlife Film Festival. In his twenty years before becoming a film producer, Chris was an officer in the Royal Navy, an engineer, a business consultant, an energy analyst, an environmental activist, chief energy advisor to a senior U.S. senator, and a political appointee in the Environmental Protection Agency under President Jimmy Carter. Chris holds a B.S. with First Class Honors in Mechanical Engineering, an M.S. in Ocean Engineering and Naval Architecture from University College London, and a master's in Public Administration from Harvard University. He was also a Kennedy Scholar and received a Harkness Fellowship. Born in Hong Kong, Chris grew up in England and immigrated to the United States in 1972. He is married to Gail Shearer and is the father of three grown daughters: Kimberly, Christina, and Jennifer. He and Gail have endowed a scholarship for environmental film students at AU to honor Chris's parents and encourage the next generation to save the planet. christopher.n.palmer@gmail.com www.ChrisPalmerOnline.com

Welcome to the Aphasia Access Conversations Podcast. I'm Jerry Hoepner. I'm a professor at the University of Wisconsin – Eau Claire and co-facilitator of the Chippewa Valley Aphasia Camp, Blugold Brain Injury Group, Mayo Brain Injury Group, and Thursday Night Poets.  I'm also a member of the Aphasia Access Podcast Working Group. Aphasia Access strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources. I'm today's host for an episode that will feature three voices, one of a partner of an individual with primary progressive aphasia, CeCelia Zorn, who also happens to be a former professor in the department of nursing at the University of Wisconsin – Eau Claire; along with Tania Riske, an SLP at the Mayo Clinic Health Systems Eau Claire, and Nancy Petersen, a social worker with expertise in grief and bereavement from Ability KC in Kansas City. Each of them have both professional and personal experience and expertise with grief and loss. June is aphasia awareness month, so we wanted to take this opportunity to share the lived experience directly. Today's episode will address grief, death, and loss: leaning into a much-needed discussion. Biosketch: Our first guest, CeCelia Zorn, Ph.D., met her husband Wayne in high school in rural northeastern Wisconsin. Wayne died from the consequences of primary progressive aphasia last August, 2023. Since that time, CeCelia has continued her work as an advocate for families living with primary progressive aphasia and more recently about grief, death, and loss as a care partner. Cecelia brings multiple perspectives to our conversation about grief, death, and loss. She is a registered nurse and a lifelong writer. She has been an award-winning university professor for 32 years. CeCelia reads voraciously, plays pickleball, and is relearning how to play the flute – taking individual lessons, playing in community bands and auditing university music history class. She volunteers at the local free clinic and is an active member of the Board of Directors for Wayne's former memory choir. On a daily basis, CeCelia strives for a life enriched by kindness, joy, perseverance, curiosity, patience, and collaboration. But she will be the first to tell you, “some days are easy but some days you just crash. Yet everyday it counts because I remind myself, life isn't waiting for the storm to pass it's about learning to dance in the rain.”   Tania Riske, MS, CCC-SLP is a speech-language pathologist at Mayo Health Systems – Eau Claire. She initially entered the speech language pathology field through her volunteer work with the Chippewa Valley Aphasia Group and graduated from the University of Wisconsin – Eau Claire Communication Sciences and Disorders program. Currently, she serves as an adjunct faculty member at UW Eau Claire, teaching undergraduate courses such as anatomy and physiology of the speech and hearing mechanism. Tania continues to enjoy treating patients with aphasia and their families within the LPAA Paradigm. Developing plans of care, counseling individuals' unique lifestyles, goals, interests, and priorities. Tania is an avid trail runner and equestrian. CeCelia, Wayne, and Tania were my guests for Episode 49 – Primary Progressive Aphasia: A conversation with Wayne Zorn, CeCelia Zorn, and Tania Riske. Nancy Petersen, MSW. Nancy grew up just outside Tulsa, OK and has an undergraduate degree in Speech Language Pathology from Oklahoma State University. She received a Master of Social Work from Jane Addams School of Social Work at the University of Illinois at Chicago, where she worked in urban hospitals and neighborhoods. Nancy is currently a Community Liaison for Ability KC, assisting patients as they transition from acute care to an intensive outpatient complex neuro-trauma rehab program. Her job also involves providing conferences and education to the medical and general Kansas City community. In her 30 years in the helping professions, she has learned much working in a variety of areas including nursing homes, hospice care, a suicide hotline, senior home care and case coordination. She has served on both the local and national Board of the Funeral Consumers Alliance providing education and advocacy relating to consumer protections in the funeral industry. Nancy is also involved with the Children's Mercy Hospital Rare Disease Patient Family Advisory Council, as well as the Ethical, Legal, and Social Integration (ELSI) Committee for the CMH Genome Project. Nancy has been married to Jimmy for 24 years and has an 18-year-old son with a rare disease, 21-year-old daughter, a cat, a dog and many wonderful friends. Take aways: Avoidance. We avoid difficult conversations and miss opportunities to engage our clients and their families in important discussions about loss and grief. Culture. There is a culture in the US of avoiding or sugar coating conversations about grief, death, and loss; using euphemisms to describe death. Prolonging. We (as a society) are often guilty of prolonging life at any consequence and failing to consider quality of life. Loss. Loss and grief do not exclusively apply to death and bereavement. They apply, as we know, to identity and loss of a whole host of pieces of our lives and identity, particularly following stroke and aphasia. PPA and degenerative loss. This loss is something we know is going to happen and open conversations about loss may help to open the door to bigger conversations about death and dying.   Interview Transcript: Jerry Hoepner: let's just kind of settle into a conversation. I really appreciate having the 3 of you here together. I know you all fairly well, but having the lens of a speech language pathologist, the lens of a social worker, and the lens of someone with the lived experience themselves is just a great way to have a conversation about a complicated and challenging conversation sometimes one that maybe people want to avoid. So, I'm just excited to talk to all of you. I'm going to open it up on the front end with a really broad question. I want to be careful, you know. I don't want to make you relive moments and things like that, but I also know that you are here because you want to be advocates for teaching and conversations about death and dying and grieving, and all of those processes. So, wondering if the 3 of you are willing to share a little bit about your personal background and experiences with grief. CeCelia, go ahead. CeCelia: Yup, yeah, I happy to start. Thanks, Jerry, for kind of pulling us all together. I really appreciate the opportunity to be part of the conversation. The thing that comes to mind when you pose that question is my family history around dying and grief and death and I'm so fortunate to have had that family experience. I think it was sort of a balance between the emotional side of dying and death, and the practical side of dying and death, and our family held both of those at the same time. It wasn't just the emotion, and it wasn't just the practical aspects, but it was sort of, I don't know, running down a river of white water with one foot in each canoe, and I remember specifically, at my dad's death bed. There were 7 of us kids, and we of course, mourned his passing and were extremely emotional about that, and stayed with him 24, 7 for 3 weeks, etc. Etc. And but at the same time we were talking about. Should we have spaghetti or ham at his funeral luncheon? So, sort of the practical aspects of how is this all gonna come together in a few weeks when we knew the funeral was coming? So, for me, that's a strength that has carried throughout my life. And I I just am so appreciative of that. And I can only speak to my experience. Perhaps other families have had similar experiences, or one versus the other, or neither. But I just wanted to sort of throw that out there. That sort of ability to handle both things sort of in the same at the same time, has been a source of strength for me. Jerry Hoepner: Wow! Thanks for sharing that, CeCelia. And I'm not sure that that is the experience of a lot of people that ability to do that. I want to take a step back, and mention something I should have mentioned. CeCelia. You kind of wear a couple of different hats, so you were a nursing faculty member for many, many years you have that holistic care, nursing perspective on grief and death as well, and then you also wear that lived experience hat as well. If I can use that metaphor in dealing with your husband. Wayne's death related to primary progressive aphasia. So just so. Our audience is understanding those perspectives. I think that's important. And to go back to what you just said, everyone has a different experience, and I'm not sure that everyone does process those things in parallel. Jerry Hoepner: Nancy, I'll invite you to share a little bit next. Nancy Petersen: Well, I'd be happy to. So, background is I have a master's in social work from Jane Adams at University of Illinois, at Chicago my experiences over the time figuring out what I wanted to be when I grew up, and what I ended up doing where I worked at a suicide hotline. For 3 years. I then worked in hospice for a number of years, including pediatric hospice while kind of in my life. At the same time my father died when I was 20, very unexpectedly at 52. I have worked in kind of every different version of the helping profession and nursing homes and pediatric settings and am currently working in complex neuro trauma rehab I was on the National Board for the funeral Consumers alliance when all of a sudden, my son was diagnosed with a rare progressive, neurodegenerative disease, 6 years ago and we're dealing with what that means and what that looks like. What that does to a 13-year-old when they get diagnosed with something that will limit his life. And so have kind of truly become aware of the difference between someone who talks about life and things that people need to know and what how things should be in an academic way, and truly have learned what it feels like to live that you know, your parents are important, but kids are different. They hit different. And when you kind of start living that deeply, what I have learned becomes a lot closer to home, it just hits really close to home. So that's kind of my background. I did a lot of I wrote a section for Jerry's book about you know, one of the textbooks about death and dying, and what I believe about it. I'm kind of curious having not read it for a while. How my! Just how the changes in what has happened in my life. And Clark was sick then. So, it's not brand new, but even then kind of the differences of what happens over time when you're living kind of a situation like that. And I just looked at something. I wrote a while back a presentation called Death as a 5-letter word and it has some interesting things in it as well. So, I think the topic of death has no answers. And the talk of bereavement has no answers, and very often people who are bereave, who are bereaved, or who are getting ready to, who are bereaving before the death, want there to be. And I think that's one of the biggest, although obvious. When you stop and think about it, that's one of the biggest issues that you're going to run into families is they want an answer to make it better. And it's very hard to explain to people they have to live it. That's part of the problem, and the issue with grief is that you can't step around it. If you do, you'll find yourself in far worse situation than if you live through it. So, I think for caregivers or those around you. There's a lot more to say about what to do for someone or with someone who's experiencing it. So, I try to look at it from all the different perspectives to see what sometimes nonsense I can spout. That sounds intelligent, because truly it is such an individual, it is so utterly individual. And there aren't right ways and wrong ways. People think there's a good way or a bad way, or they think there's a right way. And what happens is what happens. And the biggest problem is making sure that you know when it's kind of out of hand or when you need external kick assistance. You need to understand how long it lasts. You need to understand what happens in that and that it's okay. So much of what's going to happen that feels difficult or feels odd or feels out of place is normal. And maybe that's our goal is to normalize people's reaction to it is to normalize their own personal journey as not being something. Then you have to compare to anyone else's. Jerry Hoepner: Yeah, that's such an important point. And again, really emphasizes the fact that all 3 of you are experts with multiple lenses. And I guess everyone is at some point in their life. You know you. You bring your personal background to it, your professional background to it, and then your experiences with life and death and grieving, and all of those things. So, really, I mean, I think we're really fortunate to have this conversation with 3 individuals who have such a broad lens, and are able to view death and grieving from multiple lenses like you all are. Yeah, thank you for sharing that. Tania. I'll let you jump in next. If that's okay. Tania Riske: Yeah, that'd be great. Well, as a clinician, I think I really first sort of became interested in and in investing in conversations about grief because I saw a lot of patients who were facing terrible diagnoses and care partners who are trying to figure out how to sort that out and not having the opportunity to do that. Your neurologist was maybe going to be interested in providing analysis and checking in with you every few months, and maybe adjusting your medications. Your primary care provider was keeping an eye on your blood pressure and your cholesterol. And there just really wasn't a person or a provider who was acknowledging that there was going to be partings happening, that this you know, that this might be a diagnosis that was going to lead. Brief or certainly significant life changes. So it wasn't being talked about. It wasn't being supported, and that really started to make me feel like there was a that was a gap that needed to be filled, the conversations that needed to be opened and had and continued, it wasn't just a one and done kind of conversation, using it to be ongoing conversations and support. And as things change, the conversation maybe changes a little bit, and the resources change. So, I became really interested in the role of speech, language, pathologists, and other providers also in supporting brief and just. Incidentally, as this became a bigger part of what I was thinking about and taking up more headspace for me and making me really think about how I was practicing and how it's impacting patients and families. Incidentally, I lost an adult child. So, I have some of my own grief that I'm dealing with as well, and you can hear that coming up me a little bit right now. But it really shapes how I think about grief and how it's impacting families, and what they might need, or what they might want. And when I was hearing Nancy talk about there being no real answers, and gosh! Families want answers so badly and helping them explore through their grief. And what's right for them and supporting that. And when CeCelia talks about that practical versus the emotional standpoint having one foot in each canoe. I don't think that's an experience that a lot of families have. I think that that's such a lovely perspective and strength that you have, CeCelia but I don't think a lot of other families have that. So as a clinician, investing in families and helping them to have those conversations and recognize that there's not right or wrong answers. But the questions are very fair and very valid, and just be able to support that in a way that feels authentic and feels genuine and caring, and not filled with trite comments and superficial responses. And let's move on from this because we've got other things to talk about, I think, is really important. Jerry Hoepner: Yeah, thanks for sharing those perspectives. Tania. And one thing that I want to highlight for this particular podcast is, we're working with individuals with communication impairments who have maybe additional barriers to talking about death and dying. So, I mean beyond the challenges that we have with what that all of us have in everyday conversations about death and dying. That's just an additional layer. From the standpoint of sharing education with them, but also decision making and planning that becomes so much more challenging in that context. Nancy Petersen: Well, and more importantly, it may isolate them even further from those around them who could support them, who were having enough trouble, just having regular conversations with them. And now we need to have a conversation that's frightens them, that they don't know how to do and I will never forget one of my that I just read said that people who are trying to support people need to remember they're not expected to be Yoda like you. You aren't. You don't have to have the answers, and we for some reason think that is such an important thing that if you talk to someone about something difficult. I said. If you know suddenly, if you someone you know, has cancer, you're supposed to be able to talk to them about cancer treatment. I mean, I don't. The people that helped me the most in the most difficult situations in my life have been the ones who said the least and I don't know why that is hard for people to grasp or be okay with. Hmm. I think part of it is that we are really bad at silence in general and we feel like everything has to be filled. And I am one of those people who, when I get anxious, I just talk more so when I'm being silent is a learned skill, and that is something that many of us is skilled. Many of us don't have. Tania Riske: I think you're right on with that, Nancy. It's so hard to be quiet and listen and I think especially many of us who are in clinical or provider fields tend to feel like it is my job and my responsibility to try to fix this or make it better. But that's not true. But, boy, it's that's what we want to do. Nancy Petersen: Right. Even I have put in that situation, and knowing, you know, it's kind of the same thing about having a sick child, I know the right thing to do but I don't. My emotions. I'm not always. I don't always react with my brain. So, you have to have a lot of self-talk to say. Now, remember, you don't have to know everything, and quiet is good, and they know their own answers, and even with a degree in speech, I mean my undergrad in speech, pathology, so I only know enough to be dangerous. But my I mean social work teaches you to let people find their own answers, and it's still so difficult to do in a really serious situation to not want to fix and to not want to help and it's hard to believe that help is less in situations such as serious grief. CeCelia: And maybe it's not necessarily just sort of pure silence, but it might be reframing. Nancy Petersen: Reflection. Yeah, I agree. CeCelia: You know. Help me understand what you're thinking, or help me understand what you're feeling, rather than sort of tolerating the silencing. When this person is done talking. Then I can go on to some real things, but sort of reframing that silence in a new way might be helpful in some situations. Nancy Petersen: Certainly, active listening is/can be good. I mean, it can be very helpful in many situations. What I kept getting was, what can I do? when I was in that situation, all I wanted to say was, if you can't make my dad well, there's nothing you can do, and it almost angered me that people would ask, What can I do? Because there was only one thing I needed done, and nobody could do it. So, you kinda I would much have preferred, and I did prefer my friends, who were very active listeners, or who sat and padded in my leg or my arm, you know, and you also have to kind of figure out. Are they in the middle of the death, like are they? Is the death actively occurring right then, in which case silence might be helpful. But then, when they want to talk about it. When someone wants to really talk which happens inner, you know, it's interspersed in all of that that reflection and active listening and reframing and making sure you understand what they're saying can be, I think, most helpful. Tania Riske: Oftentimes I've really seen my role as inviting the conversation, opening the door and making it a safe space for that conversation. Even if a patient or family isn't ready to have a conversation about grief that either they're experiencing or they're anticipating they may be or they're going to experience in the future. To know that first of all, I'm acknowledging that, and then also really trying to create that safe space with an open door that we can go to that conversation and that this is this is an okay place to start thinking about what might be coming, what we're afraid of. So, I think starting the conversation early is also important. Nancy Petersen: Well, and here's one of the we. I'm sorry, CeCelia, do you wanna. CeCelia: I was just gonna sort of concur with you, Tania, in terms of, in addition to that sort of the idea of repetition and patience that it's not just a one-time shot. Okay, this happened on Tuesday, 3 weeks ago, and now I don't have the space to do that. But sort of the need to repeat that open door, and maybe I wasn't ready 3 weeks ago. But by God, I really need to do this again. So please be patient with me, and please repeat this opportunity. So, the idea of repetition and patience seems important. Nancy Petersen: And one of the differences is, a lot of people don't always have a Tania that they see regularly in life to do this and what the thing that I have seen happen so many times is that the person who so …, we get a lot of rehab and we do what we do. But sometimes we'll get people who have glioblastomas, and they want rehab and I'm not sure the patient wants rehab and that yes, getting stronger is helpful. And yes, that gives them more energy. And maybe they just had a reception, and maybe they really can build up a little bit, but it's so much the families who are in denial that want them to get better, and they'll grasp. But any straw to try to make their need to understand and accept what's happening to put it off just a hair longer. And when I worked in hospice specifically we would walk in. They actually even took the word Hospice off our name tags because families were insistent that we not tell the patient they were dying. What was always most amusing was that the patient always knew they were dying and would ask me not to tell their family they were dying. So, the conversations that weren't getting put off were grief related, and fear of death related so intensely. Both desperate to protect the other member of their family, the other group and we did a lot of trying to get to the elephant in the room trying to get to the thing that everyone knew was happening. But people get there so differently that it's very difficult, as the social worker put in the middle of that pers that situation, to figure out who's ready or what their reactions gonna be. If we decide to talk about this and how to handle that reaction because we would get I mean, we changed our name tags. We got so many families angry that we were supposedly letting their dying loved one in on the little secret they were dying and instead of us saying, It's not a secret. The word. Hospice is not going to come as a great surprise to them. We just took it off. Tania Riske: Wow! That's really interesting. I do see on a routine basis what you're talking about, where families do not want death dying hospice any of those words uttered around their loved ones, and sometimes vice versa, too, but almost always it's families protecting their loved one who is dying. But to take it to that extreme of. We can't even have this on a name Tag, because it's just saying too much angering. Too many people is really fascinating, and I think very telling about just our whole thought process around death dying and grief. Nancy Petersen: Our death, denying culture. What do you possibly mean? Having worked in it, I literally would sit at a table at an exposition. You know, when we're trying to talk to people about Hospice, and people would literally go away from our table and around like Hospice was somehow catching. Tania Riske: Wow. Nancy Petersen: And say, I'm not dying. I don't. Don't talk to me about it, and like literally avoid and it would catch me. So I mean I just I was always amazed at the number of ways people would avoid talking about something. That's one of the very few things you must never. You can't avoid. No matter how far away you walk them from my table. What it does instead is make you ill prepared for when it does come. Hmm, okay. CeCelia: Wonder if we need to reframe the language that we use to describe people's reaction. You know, thinking about the negativity associated with some of the labels. I'm just. I'm just thinking about the word denial and avoidance aren't very positive words in my book. And yet we continue to label people in denial and avoidance. And I wonder if we could think about the meaning of the language, and how that might help people I don't know. Just raising the question. I don't have any answers, but. Nancy Petersen: Well, I think there's a part of me that says, if you soft pedal it, you're not doing them any favors now, that's my belief, and I have been in working with death and dying my whole life. So, I know that I'm not your average person, but I blame society. I blame the way we talk about things in advertisements, the way we talk about things on the news. We don't even use the word die. We don't use the word death. We don't use the word, you know. We come up with all these euphemisms of passed on or lost. I think personally, they are not benefiting us. I don't think so personally softening the language. Now, if I'm dealing with a family that can't handle what I'm not trying to force this sudden societal change down everyone's individual throat. But what I am saying is that in general we probably need to. You know, when you talk in different cultures about death. It's something they talk about constantly. When you look at, look at the native Americans. Death is part of the circle of life. It's what there is. And we talk about. You know, vitamin water like it's gonna be the Fountain of Youth, and we're never gonna have to die if we take enough pills that are vitamins, and we drink this magic water, and we Yoga or Pilates that we suddenly have this option and America is known for I mean, I went and studied Hospice in England, and they were vastly different in how they approach death and how they handled pediatric deaths. Jerry knows not to get me started about that. We literally act in this country. We do not let children die, we will not, no matter how much we know. That's we can't stop it, we will not people die. I saw a 95-year-old woman with advanced Alzheimer's getting a feeding tube put in and I, who did not know where she was in the hospital. She was terrified. She didn't know what was happening. It was a horrible situation, and I thought, well, probably the best thing we need to do is put a lot of food in her that sounds like the best ending for this and it just the whole thing sums up our inability to understand that if we talked about it more we might have a better reaction to it when it was time because when I've been around hundreds of people who were actively dying. They're very comfortable talking about it and they're very. They're anxious to talk about what they want and what's meant things to them and what they want to hear, and I would have family. Say, mama, don't talk like that. I don't need to hear that. I can't hear you talk about you dying right now. Don't talk to me about things like that. We're going to go make dinner, and we're just going to have a great dinner together, and push back on the dying person's desire to speak their truth and their what they wanted to talk about at the end of their life. And that doesn't. That didn't work either. Tania Riske: I agree with that, Nancy, that we are really a society, that life at all costs prolong life at all costs, and I hadn't thought about that before in light of the fact that maybe that is tied into sort of our belief system in our conversations or the conversations and the beliefs that we don't have about death dying and grief. That because we don't talk about it, it's not Ok to talk about it that facilitates that we must prolong life no matter the costs. Not thinking about quality of life but instead, thinking about prolongation of life, and those are 2 very different things. Nancy Petersen: And I see it all the time I was with the family, Father had a massive stroke. Daughters adored him, wanted him at no matter what Dad needed to get better. And so, they were pushing it better, and the dad looked at me with aphasia after a massive stroke. And I'm doing all this talking about our program, and they're so excited. And he looked at me and said, Why. yeah. Tania Riske: There it is! Nancy Petersen: Wasn't long before they let him die. They stopped coming and pushing for all of this, because he knew that the kind of stroke he had had was not going to work well with Rehab, that he had had a massive stroke and did not want to live like that, but his family was absolutely unable to manage that until he finally, after months of coming here and pretending to get better and stronger for them. And that's the other thing is, you're trying not to be mean to the family that loves you so much. They don't want you to die. But you know, let's not even get into the amount of money we're spending in Medicare, keeping people alive who have no, who, if given the choice, would never choose to live like they were living. I guarantee you they would not. And we can get into the ethics of that. When I was in Hospice we had a 36 year old man who had a ventilator and we had a 92 year old woman who was unable to explain on a ventilator who didn't, couldn't talk. The 36-year-old, said, I want to die. I am of... I have no psychiatric illness. I am not. I cannot live on a ventilator. The rest of my life. I do not want this. I've done it for 2 years. I am not living this way. and people were horrified, would have nothing to do with taking this man off of ventilator, but had no issues, taking a woman who couldn't speak off of ventilator because of her age. Now she couldn't tell you if she wanted to die or not. But that was comfortable. But taking a 36-year-old, who could talk and make a conscious choice, was horrifying and I think that for me just summed up the way that we go, that we look at death and handle death, and think we somehow have some obligation to keep people alive or never, or the pain of discussing it needs to be prolonged. I don't know if it's life that needs to be prolonged. I don't. I don't know what that is, but it may be death in this culture is a failure. And it's framed that way in some of the words like lost the battle. Yep, yep, for sure. So, it's we do it like it's war. Jerry Hoepner: How do we open that dialogue, Tania? I know you and I talked about the PLISIT model, and that as an opening for conversations. But what do you think all of you, in terms of how do we open that dialogue? Nancy Petersen: I always. I'll open it with funerals. I don't know why it works sometimes, but funerals are a practical money situation. So, if you talk about funerals in a joking way, or in a kind of a, you know. By the way, we're all here at Thanksgiving. We've never talked about this. What do you want or not want? And if you can start a conversation with something that is less than so, you're going to die sometime. Why don't we talk about that instead, it's when you die. What do you want it to look like? And it feels less threatening. I think in many cases and it can start a conversation in a non, and I know it sounds weird to say funnels are non-threatening, but sort of a practical situation that people are always told to take care of their business before they need it. So, I don't know. I think sometimes jokes or humor, or practicality sometimes are less off putting. Tania Riske: Well, and for me as a clinician. I have to be in a certain place of having built a certain amount of report before we can jump into that, you know. I don't have the sort of built in, automatic family dynamics that you might when you sit down at that Thanksgiving dinner. So, having some rapport, and really knowing a little bit more about the patient or and or their family and the relationships. But for me, I it really requires me to consciously be bold and not use the euphemisms, not just avoid and skirt around, but to really be bold and open. That conversation of first of all, acknowledging that in the case of a degenerative condition, that that is where we are heading, we are ultimately heading toward death and opening that door for conversation, about losses that are anticipated. And whether it's changes in what a person can and can't do physically, cognition, health, opening the door to those conversations and re, and making sure that I revisit that and going back to that PLISIT model where really sort of the first step in that is granting that permission to have the conversations. Maybe it's not today. Maybe it's not in a month. And frankly, with some families and patients, maybe it's never but always being intentional about opening the door and keeping the door open. How does that resonate, CeCelia? When you hear these sides of the conversations where we're thinking about it from that provider standpoint. And you are. You've had the lived experience. How does what we're saying resonate with you. CeCelia: Right. I wonder if the idea of loss isn't just dying in death. In my experience, it was a lot of different loss for 9 years. So maybe framing the conversation around loss for Wayne's loss of speech and loss of cognition and loss of toiling abilities and loss of hygiene skills and how that evolved it's not just dying as loss, but it's a loss of everything over 10 years, and maybe I don't know. Maybe reframing that loss and not in not in terms of denial or avoidance. I still have issue with labeling people in that way. I don't think that fosters an acceptance. So, in addition to that, maybe reframing loss might be I think, was important to me. Nancy Petersen: And I absolutely please don't think that I was speaking to you. I was speaking in general about the denial I, or avoidance of death, as a rule, to someone who is not in a situation of actively managing that or even thinking about it. I was talking in general to people that are out getting freebies off my table at an exhibit hall who don't even wanna start the conversation because it's something that isn't happening to them. The other thing I want to say to you is, there are other losses that you're experiencing, that I talk. I've always talked about the loss of the husband that you had until he got sick, the loss of the ability to travel with him, the loss of conversations that you would have. So it's not just the losses of him, which, of course, you worried for him and those losses, but also to understand what you were losing, what everyone was losing. And I say this to people sometimes when I say grief can happen any time and grief is something that we should look at. We're going through all the time. If you lose a job if you lose, you know your home, you know. I just moved from my big house to this small house that my son could navigate, and there was loss involved in that. Not being a choice I wanted to make, and that being forced upon us, and that being the house, we hope to be in forever. So, people experience losses constantly and I don't think we give that enough thought. We're in America. We just seem to go and go and go. We're on the move forward wherever that is, and we don't. Maybe part of this is that we don't. We're not introspective all the time about loss and about, you know, when I talk to family sometimes, it's they haven't even sort of. They haven't put towards the losses that they've experienced. And those are losses, you know. That's not. Did you lose him when they died? But those are true losses. I once had to do a thing. I was gonna volunteer with Aids patients, and they gave us all these slips of paper with, we had to write down the 5 most important, you know who's the most important person in your life. What's your favorite hobby? And then they would make us take these pieces of paper and choose which piece of paper to remove from our pile, and that was gut wrenching, and all I was doing was wading up a piece of paper, so that just that activity was very hard, and made it so clear what losing parts of your life to a disease or to a situation could cause so please don't believe that I believe people that are in that situation are in denial in that respect, or that we should use that as a negative talk just that I think we live in death denial as a culture with the way we kind of act like. It's not a part of you know. We can show all kinds of medicine on TV. But if you put anything on there about a funeral or someone dying, people push back hard. We just have a problem with it. Jerry Hoepner: Yeah, so kind of related to your example of people walking around your booth to not get to not catch Hospice. Yeah. But the other thing I'm thinking about. Nancy, as you were describing. Some of those losses. I don't think people always recognize them as losses. Just to have a conversation about changes. That you've experienced like. For example, when you said the loss of you know your larger home for a smaller home that your son could navigate. I think some people would recognize that as a change until they really think about. I loved that old house I mean, I loved it, and just opening up that dialogue might be an important piece of that conversation, too. Tania Riske: A conversation that I'm having more often is conversations with patients and families, too, about loss of identity. And I think that ties into the same idea where, if your identity was, you know, I'm gonna I'm gonna live in this house with my healthy family. And you know, we're gonna do these activities. And we're gonna take these trips and and we're going to. And this is who I am and the vision that I have when that vision changes. I think there's a real loss of who am I? What does my future look like? What does this mean? And that I think that loss of identity is a really big, a really big deal, too, that we really need to support. Nancy Petersen: And we see a lot of men. And it's not only men, but we see a lot of men who, if they can't go back to their job. They've identified themselves as the breadwinner, or the a lawyer, or whatever it might be, and just that loss is almost. I mean, they think about it as a kind of death that they suddenly, you know nobody wants to be a burden, so everyone thinks of themselves as that. But when they lose their ability to do the thing that that made them who they were in their mind. We don't talk a lot about that we talk about. Well wouldn't get you. So, security disability. And, you know, like, money's gonna solve that problem. And now you can stay at home and watch TV. You don't like and not go golf anymore with your friends, and probably not be a part of those conversations that all your guys are having at poker, because you're not going anymore. Because you have. You know, you have aphasia. So you are absolutely right. And that's why I think that and why I was big about everybody who has a part of their life, who has a piece of that person, whether it's in rehab. And they're doing speech, pathology, or PT, and they're talking about it should be comfortable with having those harder discussions than you know. How about them chiefs, or whatever it is that you can have. Once well, here, you can have it a lot we win, but you know. But you know what I mean. Like you can. You need to have a conversation that gets a little deeper. Maybe you should feel comfortable having that come. Maybe you could do somebody more good if you were comfortable with that. Jerry Hoepner: Yeah. And I'm still glad you broaden the conversation to thinking about loss, not just as death and bereavement, but thinking about the application to everyone that we're working with in terms of, you know, people living with aphasia regardless of whether that's a degenerative aphasia or whether that is a stroke-based aphasia. There's a tremendous amount of loss and change, and even being able to have a conversation about that change, to be able to say those changes sound a lot like loss. I think that's an important piece of this conversation, too. Tania Riske: Over the years that I knew Wayne and CeCelia. I really had this, I think it was a very unique and awesome experience of seeing a partnership that works so well together to support identity. Even as Wayne went through changes with his primary, progressive aphasia. How they worked together and brought me into those conversations about, how do we continue to support Wayne, but also to support CeCelia as a partner and caregiver? And I think that's a part of a conversation that very often is overlooked by providers kind of circling back to when we first started this conversation. But about how do we support people as they're going through losses that affect their identity, that affect their physical health, their emotional health, their cognitive health? How do we support families, patients, loved ones. And I had the pleasure of just really seeing a phenomenal example of that. And that's not a support system that everyone has. How do we facilitate that. Jerry Hoepner: To me it feels like. It's not a support system until you open that door. Go ahead, CeCelia. CeCelia: I was just listening. Thank you, Tania. Jerry Hoepner: Gotcha, I mean, I feel like in this situation. Tania. You made it possible for some of those conversations to be initiated. I'd be interested in CeCelia's perspective about what it took, what kinds of doors were open for that conversation? Was that something that was initiated from only Tania? Or was it initiated in both directions? What are your thoughts on that. CeCelia: It certainly was Tania and per the other speech therapy colleagues, and the aphasia community and some friends and some family. I think one question that I heard that was or comment, and I heard it several times over the course of the years was being asked like, what are you experiencing, or what are you hearing other people say? That's painful for you and sort of letting that guide the conversation when people said such and such that was really painful. But when people said other things that you might think would be horrible, it wasn't horrible at all. So maybe kind of looking at, or listening, or asking for, What are people telling you? That's painful? I don't know if that sort of addresses your question, Jerry. Jerry Hoepner: Yeah, I think so in terms of initiating those conversations about. you know what's happening in your world. And how are you responding to that it actually made me wonder to what extent was Wayne a part of those conversations. To what extent was he involved in that process, especially early on. CeCelia: Well, Wayne wasn't a real chatty guy, but of course, in my heart of hearts I I you know, being married, and so on for decades. I knew what was painful for him, even though he wasn't able to say it, and I knew what was supportive to him. So, from Wayne's perspective, he would never have. It just wasn't part of him to say, well, this is really a crack of crap sort of a thing, you know. He just wouldn't say that so it hang out. Jerry Hoepner: Was it helpful for him to be there when you were having these conversations with Tania. CeCelia: Oh, absolutely just because of the inclusion of the 3 of us you know, and Tania was so skilled in in pulling out a picture off his iPad or whatever, and it wasn't just a picture of him golfing, but it was digging deeper around his golfing, for example. So, it was a springboard for conversation. That Tania would just do over and over and over again, and of course Wayne saw it as golfing, and the fact that oh, he wasn't really golfing 18 holes anymore. And he wasn't, you know, golfing a 92 or an 88, or whatever. And Tania's questions about so what's a birdie, and what's a bogey? And you know Wayne wanted to be helpful at all that. But of course it opened up a whole door of conversation from Tania's professional position in what was happening with his identity. It ends, it. Jerry Hoepner: Go ahead, Tania. Tania Riske: I was gonna say, thank you for really highlighting that, CeCelia, because that was. I guess how I learned so much about Wayne. So, I felt like I could help to better support his identity. So when I, when we were talking about pictures, that was my favorite, because I could see such a peek into what? Who he was? Which was so much better than if I would have brought in, you know, some pre created or commercial therapy products that told me really nothing about Wayne. So that was really something that was just such a great tool. But tool is such an inadequate word for that. It was just. It worked so well for me to learn about Wayne and for Wayne to be able to school me a little bit, too. Sometimes. CeCelia: And it's just an example, I think, of starting where the person in the family are at in in the pictures. Of course, that was, as you said, tool, or whatever it's called. It was like this is who Wayne is, and this is his life. It's like what's painful for him and for me and for us together. So, it was. It was the foundation that guided the discussion, and not something you know, sort of external, that that was sort of put upon us. If you will. Jerry Hoepner: Maybe this is a good time. I jotted a question down as we were talking from a life participation approach to aphasia. Why is it so important that people have this conversation, or that this is a part of our conversations about loss and grief and death and dying? Why is that such an important piece of the life participation approach. CeCelia: I don't know 1 one aspect that I thought about when you asked that, Jerry. It's of course going through the process, and the process never ends of dying and death. It never ends but it's so. It's sort of the day to day, but it's also sort of the memory of that. Now, when I look back 8 months later, I I those are the good things that I have. Those are the times in the bottle that I will keep forever and ever and ever. So, it's not just. Oh! Wayne was discharged. Wayne died on August 20, fifth, etc., etc. It's like, Oh, that that's been my life. So, it's that time in a bottle idea of, you know, one can go with Jim Croce idea. Jerry Hoepner: Yeah. And I think that alone is powerful, that I think some clinicians might feel like, Oh, don't even touch that time in a bottle, because that's sad when you really frame that time in a bottle as something really positive and meaningful for you. And I think that's a really good reframe on the entire lens, of talking about loss and death, and dying. Tania Riske: I feel like so much of that life participation model is also about honoring identity, honoring wishes. Honoring people as individuals, not as impaired patients who we must fix. But instead, as people with lives and dreams, and some of those dreams have just been shattered or maybe they were shattered years ago. But yet they are. These are people with identities who matter as individuals and really honoring that. And I think that's another reason these conversations are important to honor the fact that yes, there will be death, and we want to do kind of right by you and by your family and loved ones with how we approach that and also recognizing these losses that we've been talking about, now honoring those and not just throwing them away, but doing our best to continue to really celebrate honor, embrace individuals and grief anticipating grief. Bosses is all part of that. Nancy Petersen: So, I just have a question because you're typically talking about people who have a progressive situation so that it. Tania Riske: That's true. That's where my lens is a little bit focused right now. But yeah. Nancy Petersen: And so that would be an I don't want to say obvious, but a wise choice to add to those conversations. I wonder if it, I think it needs to be a conversation that's in any in any sort of situation where there has been loss. Even if it's someone who's trying to rehabilitate from a stroke like we talked about, or someone who doesn't have the path of degenerative situations. But maybe that whole thing about how we have a difficult time with loss or recognizing loss would be beneficial, because we would be in a better position when other losses occurred. In other words, that it would make believing, understanding, discussing, recognizing loss in many situations would help us. What happened with what happens when those final losses start to occur. Because I just don't think we look at Change. We try to put a positive spin on change, and there's nothing wrong with coming up with the good reasons for that change, but that we don't recognize the loss that comes with those changes, you know. Yay, Daddy got a new job in a new city, and we're leaving. And then you hear we're having trouble with the teenager, because you know, I know it's hard for her, and we're changing schools and all of this. But if you don't then recognize per loss, even if to you it seems like a lesser concern than the other things that are going on that you're telling people that those losses don't count, or that that emotion isn't important and I'm just thinking about our speech pathologists and the opportunities that they have, or that opportunities any speech pathologist would have after an event or a health event to make to make it more than just, you know. Let's talk about Bill, and how you know our story today, or whatever it is that they're doing. That's sort of the more traditional speech pathology like you mentioned Tania, the typical structured speech pathology session that they would have. Tania Riske: Nancy, that makes me so happy that you kind of bring that up, because that's something. CeCelia and I have had extensive conversations about and that I get really all worked up and excited about is really the role of speech pathologists in counseling in general, you know. Yeah, maybe it is more at times focused on grief. Maybe it's identity other times. But just that whole idea of there is lots and I think speech pathologists have a huge role in acknowledging that supporting that you know, there's lots of conversation going on right now about what kind of education do we need to provide for a speech pathologist to better enable them to counsel and counsel well, and still staying within our scope of practice. Of course, our very respectful boundaries. Nancy Petersen: Absolutely. I can tell you, I can tell you there's very little even in doctor schooling. Oh, I believe they don't get any. They just nobody gets this. So, I love Jerry's been doing and what you're doing. It's just if you have an hour with a person who's coming out of some sort of crisis or medical situation. Why not use it in a way that's beneficial in a larger scope than just working on your t's, or whatever it might be. Jerry Hoepner: Yeah. And this has just been such a fantastic conversation. And I think you've done a really nice job of tying things together in terms of the life participation approach. I mean, if I just take a step back and kind of summarize our conversation, part of what makes an effective interaction is not avoiding those difficult conversations, but leaning into them, asking the questions, creating that safe space, as Tania said, for the conversation, giving permission to discuss those tricky topics. And then just actively listening, beginning where the family and that that individual are at. So, I hopefully, I've some summarized those things. Well, any missing elements that we should discuss before we bring this great conversation to a close. Nancy Petersen: I just appreciate you guys, I don't know the 3 of you that well, and I'm trying not to. I get very excited. And on my soapbox about things that I've witnessed, and things I think we could do better. So, I just want to apologize if I don't know the kind of the framework. But I certainly learned a lot and appreciate very much what you all shared today. So, thank you for that. Tania Riske: I really enjoyed having conversation about things that are so often really kind of dismissed, or nobody wants to talk about that, Nancy. I really appreciated your frankness. I you know your honesty, and just putting out there the things that we tend to be so uncomfortable about. And I think you're so right that these conversations need to happen. And they need to happen outside of the traditional of this context that we're talking about where people are looking down the barrel at loss but also they need to happen at the Thanksgiving table. And now those they just those conversations are so valuable. But yet we do such a stellar job at not having them. So. Thanks for talking about that. Nancy Petersen: No problem. Thank you. Tania Riske: And, CeCelia, I'm always so appreciative and grateful for your willingness to be so vulnerable and to really put so much out there about your lived experience. CeCelia: Thank you. Jerry Hoepner: Well, I want to thank you all for having this conversation. It feels like we could talk for another day, but we'll bring it to a close, for now. Thank you all, and I look forward to more conversations in the future. Tania Riske: Thanks. Jerry. Nancy Petersen: Bye, Jerry. Jerry Hoepner: On behalf of Aphasia Access, thank you for listening to this episode of the Aphasia Access Conversations Podcast. For more information on Aphasia Access and to access our growing library of materials go to www.aphasiaaccess.org. If you have an idea for a future podcast series or topic, email us at info@aphasiaaccess.org. Thanks again for your ongoing support of Aphasia Access.

Conversation w/ Sara Williams, President, Funeral Consumers Alliance, about goods, services and logistics associated with funeral planning, and how the Funeral Consumers Alliance helps consumers be prepared and protected when planning a funeral for themselves or loved ones.

Learn how the FCA helps consumers plan ahead for funerals and make informed choices for themselves and their loved ones. My guest Martha Lundgren is the president of the board of Funeral Consumers Alliance of Arizona. She also serves on the speakers bureau for FCA-AZ and is a representative in the Arizona End of Life… Continue reading Ep. 390 Funeral Consumers Alliance: Resources for Funeral Planning with Martha Lundgren

Green Burial: Elizabeth Fournier, The Green Reaper Elizabeth Fournier, owner and founder of Cornerstone Funeral Services in Boring, Oregon, and the author of The Green Burial Handbook, talks about what green burial is, what it isn’t, and how you can work with a funeral director to get the kind of burial you or your loved ones want. Learn about the surprisingly non-environmentally friendly footprint of traditional cremation and the new practices of aqua-cremation and organic reduction. To find out more about Green Burial Resources: https://www.cornerstonefuneral.com/green-burial-resources Elizabeth specifically mentioned the Funeral Consumers Alliance and the Green Burial Council during the show. To ask a question for the show, email me at AskLiza@lifedeathlaw.com To listen to more episodes of Life/Death/Law, go to www.lifedeathlaw.com And follow me: twitter-twitter.com/lifedeathlaw instagram-Instagram.com/lifedeathlaw facebookcom/LifeDeathLaw Linkedin.com/in/lizahanks

In this episode of The Estate of the Union, Brad Wiewel is joined by guest, Nancy Walker, the Executive Director of the Funeral Consumers Alliance. Learn what the organization is and how they are an important resource for making educated choices and arrangements prior to end of life.  To learn more about Nancy Walker and the Funeral Consumers Alliance of Central Texas, please visit their website: FCA: https://www.fcactx.org/ This podcast is brought to you by Texas Trust Law*.  Learn more: https://www.texastrustlaw.com/about-austin-estate-planning-law-firm/ Resources: https://www.texastrustlaw.com/read-our-books/ Contact us: info@texastrustlaw.com *Wiewel Law Firm is now Texas Trust Law  © 2023, Texas Trust Law, ALLRIGHTS RESERVED

Grieving for a loved one is acutely difficult just after the loss, and it's not a time when you want to sit across the desk from a salesperson in a high-pressure, time-sensitive situation. You're vulnerable to making hasty, costly decisions that might not make sense if you'd just had a little more time. Funeral homes provide important services, but they are businesses with a goal of maximizing each sale. They make money by selling products and services, some of which you and your family may not want, need, or be able to afford. In this episode, we review the many choices you have when a loved one dies, what funeral homes are required to disclose, and the marketing tricks some use to push unnecessary or high-end products. Plus, we explain why it's important to pre-plan your funeral. Special Guests: Joshua Slocum, executive director of the nonprofit Funeral Consumers Alliance, and Kevin Brasler, executive editor of Checkbook.org. Read Checkbook's full report on funeral homes including ratings and undercover price research, plus advice and resources to help plan a funeral.

"There's a psychological block going on here because the death word is hanging around our head. And that deranges us and shuts our rationality off and opens up our emotions. So we think we're thinking, but we're not, we're just feeling." Joshua Slocum Executive Director, Funeral Consumers Alliance I'm excited for you to meet Joshua Slocum, the Executive Director of the Funeral Consumers Alliance (FCA), a nonprofit dedicated to education and advocacy surrounding funeral consumer rights. The Funeral Consumers Alliance exists to help people make good decisions about funerals and the tools on their website are there for you when you need them. This episode highlights some of my conversation with Josh. Below is a transcript of the conversation with even more great information about how to buy a funeral. Thanks as always to Pat Cupples and Hotels & Highways for the use of your original music. Photo: from the movie "The Big Lebowski" Free Course: "How to Host a Virtual Funeral" FULL TRANSCRIPT (Recorded on 2/22/22) Joshua Slocum, Funeral Consumers Alliance Brian Hayden, Redesigning the End Joshua: I'm Josh Slocum, I'm executive director of Funeral Consumers Alliance. We're a nonprofit - think of us like we were the consumer reports of funerals. So we try to help people understand what their options are, what their legal rights. And how to plan a funeral. And I use that term expansively means anything that can be done with the dead body. So it could mean cremation only. It could mean body donation. When I use the term funeral, help people plan and arrangement a funeral that meets their emotional needs, but also meet their budget. Because money is one of the biggest factors that causes people dissatisfaction and funerals. And I got into the work because I used to be a newspaper reporter. And I did some research on the funeral industry a couple of decades ago for a feature story. And, and what I uncovered was so disturbing to me in terms of how consumers were mistreated and how much collusion there was between state regulators and industry lobbying bodies that. you know, I got in contact with this organization, funeral consumers Alliance, and that turned into a job. So that's how I got here. Brian: Great. Why does the Funeral Consumers Alliance exists? What's the role that your organization plays and, and who do you serve? Joshua: We serve the general public. Anyone who wants information, needs information on how to plan a funeral affordably. That's what we're here for. We try to act as a voice for consumers in public policy discussions might be legislation might be regulations that affect the well-being of grieving people in the funeral, transaction, buying cemetery, property buying funeral. Because consumers need a voice in that arena as well. And there are already industry trade associations that speak for funeral directors. So we try to speak for consumers. So an example of big picture stuff that we do, our organization was heavily involved, many decades ago in helping get passed. What's called the funeral rule, which is a set of regulations that federal trade commission that give consumers specific rights when arranging a funeral. And today we are pressuring the Federal Trade Commission to strengthen the rule, to bring it into the 21st century. So for example, the funeral rule requires funeral homes to hand people, paper priceless so that they can see what they're buying. First. We want the FTC to require those price lists to be published online, to meet shoppers, where they shop and the way they shop in 2022. Brian: So how should I shop for a funeral? Joshua: Well, let me take it two ways. Let me, let me give you two scenarios here. I'm going to give you the, the, my recommended best case scenario. For how, how to make it as smooth as possible. And then I'll walk through the acute scenario where you've done no planning at all,

Today Susan Mackey shares her creative solution for providing after-death care when a home funeral wasn't possible, home funeral care just not in a home. To learn more about Sue and her work see her website here: https://www.outoftheboxfuneralplanning.com/Susan serves on the board of the Funeral Consumers Society of Colorado, an affiliate of the national Funeral Consumers Alliance. Here are those links: https://www.funeralconsumercolorado.org/https://funerals.org/Support the show (https://www.homefuneralalliance.org/donate.html)

In this episode my guest speaks to how the Funeral Consumers Alliance is the only national consumer organization that monitors the funeral industry, keeping a close eye on industry trends and advocating for fair practices on the behalf of consumers. She speaks to your legal rights, and little-known facts in how you can save costs, especially, when under emotional vulnerability. www.fcaaz.orghttps://www.yourlotandparcel.com

Joshua Slocum, Executive Director of the Funeral Consumers Alliance reveals State Funeral Oversight Agencies Failing in Their Obligation to Consumers   See omnystudio.com/listener for privacy information.

In this episode, Holly Blue Hawkins shares about her role in end of life care and advocacy and about the way she came to her work and Judaism. Heading into the conversation, I expected we would focus on the present day, but it was in the journey that I found myself wanting to stay and listen. It's a reminder that how we get to places is as important as the places themselves. About Holly Blue Hawkins: Holly Blue Hawkins is a Natural Deathcare advocate, educator, community organizer, cemeterian, author and poet. As a Gamliel Institute graduate and faculty, member of the Green Burial Council Speakers Bureau, Rosha Chevra Kadisha, past member of the Board of Trustees of the Funeral Consumers Alliance of California, and independent consultant with over 35 years of experience, Holly Blue provides education and training in a wide range of end-of-life subjects in both Jewish and secular settings. She has visited countless natural burial sites from England to Hawai’i and is a regular presenter at Limmud UK in a variety of end-of-life topics. She has trained home funeral guides, consulted with cemetery management and mortuary care center personnel, and taught community college extension courses in all aspects of estate planning and the need for environmentally sustainable and culturally-sensitive practices and facilities.Hebrew and Jewish References Explained: Am Yisrael: Hebrew for “the people of Israel” or “the nation of Israel” Chevra Kadisha: Aramaic in origin is the term for Jewish burial societies, also translated as “holy friends” or “sacred society”Omer: A period of 49 days between the Jewish holidays of Passover and Shavuot. There is a practice to count each of the daysShmirah/Shomer: From the Hebrew word “to watch” or “guard”. There is a custom of watch the body of a deceased person from the time of death until burial- this is one of the roles for members of the chevra kadishaTahara: The ritual of washing, cleansing, and dressing a body for burial. This is a role of the chevra kadisha Get on the email list at besideproject.substack.com

In this episode Ray Mulvey and his daughter Laurie describe the home funeral they arranged for Ray's wife of 58 years, Judy. Ray lives in New Jersey, one of the states that requires hiring a funeral director to oversee certain aspects of the funeral. Laurie is a resident of Pennsylvania and a member of her local chapter of the Funeral Consumers Alliance. To learn more about this important organization see their website here:  https://funerals.org/The movie Laurie mentions watching is the 2003 PBS documentary called, A Family Undertaking.  It is available to order on DVD from Netflix.Support the show (https://www.homefuneralalliance.org/donate.html)

Josh Slocom of the Funeral Consumers Alliance reveals California Funeral Homes That Hide Prices Charge More Than Those Who Disclose

Molly, you’re in danger, girl. We dabble in the paranormal and figure out how much we believe in it. Buckle up, because we’re gonna ghost the hell out of all of you.FURTHER RESOURCE INFO:Why Do People Believe in Ghosts? by Tiffanie Wenhttps://today.yougov.com/topics/lifestyle/articles-reports/2019/10/21/paranormal-beliefs-ghosts-demons-pollWeird NJ magazine CHARITY/NON-PROFITFuneral Consumers AllianceThe death of a loved one is never easy. In addition to the emotional stress, other variables and issues such as finances or family disputes can make things even more difficult. These extenuating circumstances cause many people to rush into making a decision, often resulting in unnecessary costs leading to even more stress down the road.Funeral Consumers Alliance is the only national consumer organization that monitors the funeral industry, keeping a close eye on industry trends and advocating for fair practices on the behalf of consumers.Their network of volunteers not only work directly with consumers, but also alongside those fighting for legal and regulatory reform on the local, state, and national levels. To donate please visit,  https://funerals.org/donate/

If you've ever planned a funeral for a loved one, you know how difficult that can be. This week I sat down with Patricia Sexton, rector of All Saints, Cayce, to talk about her work with the South Carolina Funeral Consumers Alliance. Links mentioned in the show: South Carolina Funeral Consumers Alliance Funeral home price surveys The Episcopal Church's efforts around race and reconciliation Sacred Ground study series

Jessica Byrne’s tips on how she reached her goal of saving $300,000 — all at the age of 26. - I'm 63 and have $18,000 in student loan debt (Carol) - My brother-in-law wants to short a stock. What does that mean (Brian, New York City) - What should I look out for when dealing with a funeral home (Destyn, Vancouver, WA) The Truth About Certified Cars - What one woman is teaching her grand daughter about life Mentioned on the show: Funeral Consumers Alliance - https://funerals.org/

"Why would you pay full price for a funeral so someone else can laugh all the way to the bank?" - Lincoln - Are certified used cars worth the extra money (Rodrigo) - How does Habitat for Humanity work to get a house (Batman) - Should I let my brokerage reinvest dividends (Mike, Zimmerman, MN) - Is there a good way to teach teens how to handle a debit card (Garrett) - Thanks for the tips on balancing spending and saving (Miguel) - Deals on SUVs and crossovers are available for car drivers - Why you need to diversify your skills Mentioned on the show: Funeral Consumers Alliance - https://funerals.org/ Greenlight Debit Card - https://www.greenlightcard.com/ Get The Complete Guide To Saving Money FREE printed copy of Scott's new book - How to Save $1,000 This Week: http://bit.ly/2w30ZWs

Episode Description: In this episode, some of the most common myths and misconceptions about funeral directors and the funeral service industry are explored. Tune in to learn the role of the funeral director, options for final disposition after a loved one dies and how the funeral director supports the grieving process.   Show Description:  Join your hosts, Jenni Brennan, LICSW and Josh Brennan, CTBS, and explore a variety of topics including grief, parenting, health and wellness, and relationships.    Show Notes: Center for Loss and Life Transition, Dr. Alan Wolfelt: https://www.centerforloss.com/grief/funerals-and-ceremonies/   Funeral Consumers Alliance: https://funerals.org/?consumers=common-funeral-myths

My guest this week is my friend Josh Slocum, who is the Executive Director of Funeral Consumers Alliance and the co-author of Final Rights: Reclaiming the American Way of Death. Josh is a consumer advocate who is also willing to give consumers a little tough love in the face of what he refers to as learned helplessness. At the same time, he argues that the industry should be more transparent with pricing so that consumers are better able to make decisions that are meaningful and affordable.

Amy Cunningham is a progressive funeral director and the owner of Fitting Tribute Funeral Services in New York City. A former journalist, Amy co-authors a blog, The Inspired Funeral, with Kateyanne Unullisi. Full Transcript: Intro: This is Tanya Marsh and you’re listening to Death, et seq. The Fall semester just started at Wake Forest, so we’ve gone to episodes every other week for a little while, but the students in my Funeral and Cemetery Law class this semester will be helping me with some episodes, so you can look forward to some interesting topics. In the near future, you can look forward to an interview with Josh Slocum, the Executive Director of Funeral Consumers Alliance, and a conversation with my friend Tim Mossberger, the unofficial archivist of The Avett Brothers, about their music and mortality. But today’s episode is an interview with my friend Amy Cunningham, who is a progressive funeral director in Brooklyn, New York. Amy went to mortuary school in her 50s and embarked on this second career with an incredible amount of energy and empathy. She is the owner of Fitting Tribute Funeral Services and she is one of my favorite people. I hope you enjoy our conversation. Tanya Marsh: I am sitting with Amy Cunningham today in Brooklyn. Thank you, Amy so much for joining me on Death, et seq. Amy Cunningham: Hi Tanya. I’m very excited to be here. Tanya: Amy, I think of you as a non-traditional funeral director for a couple of reasons. You don't come from a funeral family. This is your second career. And you actively promote home funerals, green burials, and a number of other of “non-traditional” processes, rituals, and methods of disposition. And you do all of this in a state, New York, whose licensing makes it particularly difficult to be a non-traditional funeral director because of the licensing requirements. So can you just share your story and what motivated you to become a funeral director? Amy: Sure, it started with my father's death in South Carolina in the care of hospice and you know down there it's obvious to people in the small towns who to call when they need a funeral director—they know the funeral director from the Chamber of Commerce, from Rotary. So when my dad died we gave him a magnificent music-infused funeral service in the Presbyterian Church. I was amazed by the sweetness of the funeral director down there. I came back to Brooklyn. I was then a journalist writing about Buddhism meditations, spirituality, the new spiritual marketplace in the United States, how families were into marrying and mixing faith within their family system. I came back to Brooklyn after Dad's funeral and said to my husband, “gosh I admired that funeral director so much. I wonder what it would be like to be a funeral director. I wonder how you go about doing that.” That was in 2009, and six months later I was enrolled in mortuary school here in New York. It was a very rigorous demanding year and far more embalming and chemistry and science education than I ever anticipated. I'm not bitter about that now, but I was then. I got through all that and then took six months to, at the age of 54, not many funeral homes are eager to hire a mother of two who's had a career in journalism that doesn't seem applicable to the funeral biz. So it took a while to get a residency. But I did land a good one with a marvelous man who trained me and then I stayed there for three years and was always consistently interested in meeting the needs of families with a lot going on in terms of their faith constellation. The average family I meet with in Brooklyn these days—someone's a lapsed Catholic, someone's Jewish, someone's going to Buddhist retreats and practicing yoga. And they're trying to figure out how to arrange a funeral for a grandmother who had no faith at all, but then became a Mormon in the nursing home where she fell in love with the chaplain who was a Mormon and people come to me in that state. And when I sit with the family like that I feel I'm really in my sweet spot that I can truly help validate them and show them that they are not atypical that this is really the way we are right now in the United States. We can build a good ceremony. Tanya: I like that phrase “faith constellation” because that kind of pushes back on the notion—a notion about America in general, but maybe Brooklyn in particular, that we are increasingly unchurched and without faith. But that's suggesting that you actually have this sort of diversity and these mixed families of different ritual backgrounds, different faith backgrounds and so trying to find the middle ground or factors that are common to all of them, something that's meaningful. Amy: And yes there's a core of spirituality there and there may even be prayers or poetry that is loved within that family. So it's finding the right mix of language and music and the flowers and the right casket for that kind of group. They've got a lot going on so they want to keep it simple. And they're terrified about being ripped off or paying too much and too many people come in quite uninformed so to guide that kind of family through an experience that that then leaves them in an exalted, uplifted place is very meaningful work and I love it. Tanya: So what would you say your goal is as a funeral director with respect to families and the funerals that you're trying to accomplish. Amy: While I do a lot of alternative services, home funerals, green burials, witnessed cremations, I start out a bit simpler than that. I just want to give them a kind of ritual, a separation ritual that will be meaningful to them and that will endorse or include the values of the deceased and also send them out of the cemetery or out of the crematory that day off to their luncheon or whatever meal they're going to have after the service send them off in a place where they feel that that deceased person was loved, honored take good care of, and that we really did as a group the best job we possibly could. Tanya: Do you tend to deal with people more on a preneed basis? Do you have a lot of people come to you in advance to arrange their own funerals, or do you find that you're dealing more with families after the fact, or is it a mixture. Amy: Increasingly, as I get better now I've been very fortunate to have some good press, people are coming to me in advance. But I would say more frequently they're calling me the night of or two days prior to the death and the care of hospice occurring. A lot of my folks are dying in the care of hospice. I'm making inroads through hospice and getting known to hospice workers as someone who will take not only take great care of the deceased person but manage that complex family constellation. Tanya: And so mostly you're serving people in Brooklyn? Amy: Brooklyn and Manhattan, and Queens recently. Tanya: And then where are their families located? Are the families predominantly local. Or is an aspect of it that … I mean is part of the reason that people are calling you sort of at the last minute because the families coming in from out of town and nobody has made any arrangements. Amy: Some of that. I'm calling people who are in hospital corridors. But the cell phone will say they live in Portland or Cincinnati or Florida. So a lot of kids with parents dying here in New York because that's got that's got to be a challenge. Tanya: If you're not from a funeral family, you're not inheriting a funeral home or buying into an existing funeral home that has a book of business. Amy: Right. Tanya: Because most funeral consumers, the studies show, don't shop around. And there's an incredible reliance on using the funeral home that you've gone to funerals at before, to stick with a funeral director or a funeral home for multiple generations. So what are some ways just from a marketing perspective, getting started as a new business owner that you've tried to use to combat some of that. Amy: I used my background in journalism to develop some PowerPoint presentations that are purely educational or are not sales pitches. I just show people what a cremation is. What is cremation history. What did cremations look like in ancient Rome. And I started delivering those presentations at the Park Slope Food Co-op. Now we have 15,000 members in an alternative grocery store here in Brooklyn. And then my little show kind of took off and went on the road and Greenwood Cemetery now has me giving those kinds of workshops monthly and that's been great for all of Brooklyn. If someone asks me for a business card I may give it to them but it's not about spreading the word of my company, it's more about just giving them the facts because I think all funeral directors need to see themselves as educators. Death is a rather complicated today and there are a lot of important decisions to make involving thousands of dollars. And families will really feel cared for when they feel like they've been educated not just sold a bunch of goods. Tanya: Is it that younger people? Older people? Amy: It's neat. A lot of older people sometimes maybe couples in their 50s, 60s, 70s saying to each other “we really got to get going on this. We want to spare our children the struggle of putting a funeral together for us.” But then also I'm seeing people in their 20s and 30s are interested in funeral planning but also looking at careers in the end of life sphere. And I love these kids. I'm really impressed with the young people I'm meeting. I tell older people are in good hands because these are the people who are going to be taking care of us. And I think the book has not yet been written on how 9/11 influenced a whole generation of people. and deaths awareness and Caitlin Doughty’s books and all the great articles that have been running in The New York Times about getting ready for death and how to face it with dignity and courage. All of that is feeding a culture of young people who really want to get involved and help do death differently. In whatever way that means. And we used to say … I lead a Death Cafe at the cemetery now and it used to be said that death was the last thing any family wanted to discuss. And it was a forbidden topic. I don't find that to be true anymore. I think podcasts like yours, everything that's going on, has made death much more interesting to folks and a great topic to contemplate daily, just as the Buddhists advocate that life is improved through death and contemplation and then awareness. Tanya: The rural cemetery movement of which Greenwood was a part of, Mount Auburn Cemetery in Cambridge Massachusetts as a part, were designed in part to give lessons to the living. They were designed as places of contemplation. I mean that was a thing that was part of our culture not that long ago a century, a century ago, and that we've really lost connection with. That acknowledging death and its inevitability and trying to think about how we want to deal with it both for ourselves and for the people that we care about doesn't have to be a scary icky saying it's actually an affirming thing right. Amy: Right. I may be a funeral director because I spent two weeks every summer of my girlhood in Texas and my grandparents used to take me to church every Sunday. And then after church we would drive to the cemetery. It wasn't even a topic of conversation. We would just go pull weeds up look at the stones and say, oh you know, there's Aunt Mildred. And then just go out to lunch. Nothing was really spoken, that was just a ritual that we had. Tanya: I mean I used to go to Nebraska in the summer of visit my grandparents and my grandmother and I in particular we used to go around to all the cemeteries in the county and she'd point out to me who all our people were. We'd pull grass. We were just in Nebraska about three weeks ago and cleaned up some grass around some of the tombstones, and I think I put on Facebook that were visiting my grandmother. Amy: It’s a lovely thing. Tanya: It's a connection. It's a connection through the generations and your relationships with people don't end at death. So Amy, you've talked about people coming from a whole diversity of backgrounds and positions of faith or ways of looking at the world and what some of the common factors in a good funeral might be. So have you thought about what makes a good funeral regardless of your background? Amy: I think even folks who are secular do well to study the structure of a religious funeral, because there are keys to the high notes and the important moments there. Even the terminology and the names of things are wonderful to study. I was just looking up the “death knell.” They used to ring bells when deaths occurred. There used to be callers out on the street, centuries ago, who would notify the community of the death. Today we have Facebook. We toll the bell in a completely different way, but a good funeral involves acknowledgement of the death, an announcement, an obituary, something like that. Tanya: An acknowledgement to the community and by the community. Amy: Right. And then kind of separating process. You know not all deaths occur in the presence of family. But when that death has occurred in the hospital room and family members are standing there weeping…we need to figure out how to, if there's not going to be a home funeral, preferably, it's wonderful to advise the family, if you get them early enough and can educate them, to spend some time with that deceased person and alert them to the fact that it is perfectly legal to keep that deceased person in a hospital room for three or four hours, or if death has occurred in a home in the care of hospice, that person doesn't need to be whisked away. We shouldn't be afraid of the body that we can actually sit there, cry, tell stories … hold the hand of the deceased, comb the deceased’s hair, maybe dress them, wrap them in a shroud. There's things that we can do at these moments that are very beautiful. So a good funeral I feel involves some involvement with the body. That doesn't mean if it's not your tradition, or not your inclination to be with a deceased person's physical body, you can sit in a quiet chapel at the crematory or at the funeral home in the presence of the body in a closed casket, you're still with the body, the body is still there. So I help people who are intimidated by too big an old fashioned deathbed experience to at least maybe sit in the funeral firm for a moment and have something like a visitation. So the announcement, the body, and then some kind of acknowledgement of the meaningfulness of that deceased person's life through a eulogy, through could be a written statement, something often in the context of a service, I think is great. And just feeling like you said to that person everything you had to say and that if you loved them, you said that in the presence of their body even when life is no longer going on within it. And then I think there should be something having to do with friends and a meal or you know these are the the bits, and I divide it up and look at it. And every family does part of it differently and some families try to forego a lot of it, but if they can just have one piece of it, then I feel like they have something they can talk about later and share with their friends that we did the best we could. We gave mom a good send off … we looked through photo albums. There's just there's a lot to it. And the days that unfold after death in the family… we call it a liminal time and space. Sometimes I call it sacred. If someone is secular and they don't like that word it's a special time. It's not every day you have a death in the family. So do whatever you can carefully try to seal yourself away from work and find activities that that will help you honor that person. It could be as a small ritual as if your grandfather washed his car every Saturday, you could start washing your car every Saturday. Some kind of little funny thing that brings that life back to you. You could change your Facebook password to have that person's name in it. Little teeny salutes to the value of that person's existence. I think make for a pretty good funeral. Tanya: We’ve also talked about that you think the start of a good funeral is with the transfer process and there are improvements that the industry more generally could make to the transfer process. Amy: Tanya, if I could make one change in the funeral business, if I could just help the industry see that that transfer from the place of death is the beginning of the funeral. This is where the healing will begin. To train the people who are coming into hospital, walking down the corridor with the rolling funeral home stretcher or cot and orchestrating a transfer from that bed where the deceased person died in and taking … it's a changing of the guard. It's taking a deceased person out of the hospital or the home and into the funeral home and doing that with grace and art and respect. And so many families come to me and say “oh my god my mother died and these guys came and they asked us to leave the room and then we heard the zipping of this bag and then they left as if they didn't want to talk to us anymore. And that was that. And we felt there was a tremendous rupture and sadness and that's when we began to grieve.” That's an unfortunate moment. So I like to go to hospitals with flowers in my arms. I greet the family. I speak to the deceased person by name. And everybody seems to feel good about that … that they know they're giving me permission to transfer that deceased person and take them into my care. But on a slower schedule, at a pace that they can tolerate, and including them and asking them to put music on a cellphone so that when we walk out the door and down the hospital corridor there's some kind of ballad in the background that articulates something about their love for that person. I have a very pretty cot cover. Nothing's ugly. I put flowers in the arms of the deceased so often. There might be flowers on the window sill that have been languishing there through the whole prolonged end of life period. So I take those flowers and I put them in the deceased’s hands and we cover with a pretty cot cover and we only cover the face when the family has told us it's OK to cover the face. So it's a moment and it's a … I make it a thing. I've tried to bring pageantry and a kind of ecstasy back into the whole period and make people feel like home. Okay, now we can go home we can bathe we can be ourselves for a while and let's get ready for the next phase of this thing. Tanya: I think it's so interesting because I've had a lot of conversations so far with people talking about the diminishment of the ritual as in the funeral. But you're talking about imbuing this whole period right after death with ritual that I think we have not had more broadly speaking right. And you're right. I mean the death of a person is such an abrupt transformation. Psychologists and sociologists have talked about, how at least in Western culture, we view human remains as unclean and that part of the funeral ritual like embalming and dressing and putting makeup on is and making a person look more alive is a way of socially transforming this unclean thing into a clean thing because it appears to be alive. Which is I think sort of, more traditionally for the past century, the way that we've all kind of viewed this and so if you look at it through that lens, yeah, take the unclean thing away immediately and then make it presentable again to be given to the living but you're sort of rejecting that idea. And I don't think you're alone in that. I mean I think there are a number of people who are rejecting that idea and saying that it is in fact that abrupt transformation or wrenching away the body that is unhealthy right to processing grief and saying goodbye. Amy: I think of it energetically and I feel like there's still even after a death has occurred a life energy in the room. So I happen to feel, at least it's very helpful to me. I don't know if a soul exists. It's very helpful to me as a funeral director to believe that one does because I comport myself as if the soul is watching me at all times. And it's a mindfulness practice. You have to feel that that deceased person has their eyes on you and that's a lovely relationship. It's not scary. It's a great thing. I talk to deceased people. I that kind of energy in the room. And I think people respond very positively to that. My funeral families seem to like me for that reason. None of us know. But it’s a good idea to just trust. Tanya: So I I've been asking this question of a lot of people and plan to continue to do and to do so and I think your answer just sort of showed your hand on how you might answer it. But do you think that funerals are for the dead or for the living. In other words, should we be respecting the wishes of the deceased with respect to their own funerals. Or should we be focusing more on what those that they've left behind want out of the whole process. Amy: This is the great mystic question. Actually, it was discussed in the first week mortuary school. And I think the technical answer is that it is for the living. Tanya: What do you mean the technical answer, you mean the answer that funeral school… Amy: Yeah, that you're wanting to engage that family in in a meaningful experience and that they are paying for a meaningful experience. But the wishes of the deceased certainly have to come in there. If grandma was a strict Roman Catholic, many families come to me saying we don't go to Mass anymore but grandma would want us to do this. This is what we're doing. Or they might adapt it a little bit, change it slightly. But I do think sometimes the wishes of the deceased can be disobeyed. And this is my example of that. It's not what you think. A friend of mine's mother said “I will haunt you,” as she was dying, “if you give me any kind of funeral. I don't want any funeral.” And they didn't have a funeral. And months later my friend was saying you know that was like Mom's final deprivation. We should have done something. So I think sometimes dying people may insist they don't want much but I think we can give them more than they ask for. Tanya: Well I think it's interesting especially since you mentioned that in the first week of funeral school that this was something you talked about, because the position of the law, and this has been true since Roman times, is that it's the decedent's wishes that matter. Right now part of this I think in the Anglo-American system had to do with the established Church of England and Christian doctrine about you need to be buried in consecrated ground. You needed to have, you know, the priest or the minister preside over your funeral if you were going to be resurrected eventually. So it was so important for the deceased that there remains be treated in the correct way and their eternal salvation rested upon that. That it was like a social contract. I'll take care of you, if you take care of me. And it was sort of an assumed baseline of what the decedents were going to want. Amy: It’s fascinating. Tanya: So the attitude of the funeral industry is so opposite to the tradition of the law that that's just it's really fascinating to me when you have these kind of incredible tensions and disconnect between two different institutions that are both sort of longstanding. No wonder people are confused, right? Amy: And that makes the appointment of agent to control the disposition of remains that are very important for people who whose wishes run contrary to the wishes of their families and that they want to make sure that they're protected. Tanya: Well and you know a practical problem that I've heard a lot of funeral directors say is that especially if a person died and they didn't have a spouse or their spouse predecease them and they have children where they have you know some other category of people who get to make a decision and that there's disagreement within the category. Divorced parents making a decision for a deceased child or children making a decision on behalf of a parent that you can have real practical problems and try and sort it all out. And that's the deceased left behind instructions then that's going to be a lot easier for everybody. Amy: Exactly. Tanya: So what kind of conversations do you have with people on a preneed or an at-need basis in terms of what kind of goods and services that they're looking for from you. In other words, why are families or soon to be decedents coming to you and so some other funeral establishment. Amy: Well one thing that I offer, and I'm very clear about on my website, is that I make every effort to make the funeral eco-friendly. So my customers tend to come to me because they know I'm going to offer them a simple casket and they also are not interested in embalming. My customer almost uniformly … I think maybe I might have one or two embalmings a year. And I don't mean to upset embalmers or be anti-embalming. It's just interesting to note that my customer is wary of embalming and not desiring that. So they may even ask about it, “You're not going to embalm.” And I say as you know, that's what I say on my website, I make every every effort not to embalm. I partner, I have my registration at a Jewish firm and it has a very large refrigerated space. So all our deceased people live back there, they are kept cool and can last a long time without any chemical intervention. That's … I've found that there are enough New Yorkers who find that important that they come to me and trust me. Tanya: And so a lot of people are coming to because of environmental considerations. Amy: Yes. Tanya: And so you have observed that their objection to embalming is part and parcel of their environmental considerations? Or is there something else going on with their objection to embalming? Amy: That’s a great question. I think they want as little intervention as possible. And here's the key word—they want an authentic experience. They want authenticity the whole way. Tanya: And they're viewing embalming as antithetical to authenticity. Amy: Yes. And I feel that there's a new generation of funeral customer who wants to see what death looks like. I recently had a family that even said “don't even close Dad's mouth.” A lot of funeral directors would find that outrageous, that of course you're going to close the deceased’s mouth for them. But this family said he looks fine. And they want things as natural as possible. And they're sometimes very amenable to viewing with very minimal care. They say goodbye at the hospital. They may take a glance or sit with the open casket for a time and they don't feel that chemicals are useful to them. And this is a customer that wants to watch money. But I also feel like they might be shopping at Whole Foods where they may be paying a bit extra for an organic apple just because it's organic. Tanya: Right. So interest in driving down the price of the funeral is not something that you've observed is a primary consideration. Amy: I tell that to other funeral directors as the good news of this thing because this customer wants it real and is willing to pay for that. Tanya: So what does a home funeral look like in New York City? Because it's always seemed to me that the urban areas were some of the first places where funeral homes became popular and widespread because people simply didn't have enough space in their own parlors. They had to go to a funeral parlor. And you still have some of the space considerations and people don't have cars. I mean you have a lot of sort of practical constraints in a city like this that you don't have in many other places that would that would seem to complicate a home funeral. So are you looking at home funerals and for the folks that come to you, it's like a whole range of different options? Amy: Sometimes a home funeral in New York is a delayed transfer or pickup. I'll get a call from a family they'll say “we've just called hospice. Mom is dead. We'd like four hours.” And I say “great you know let's set a time. Let's send text messages to each other. You tell me when you're ready and we’ll come over.” That's a mini home funeral. You don't need any dry ice for that. Sometimes it's an overnight. We've done quite a few of those. Sometimes it's a longer, more prolonged ritual. I had a Tibetan case where we kept a deceased gentleman in an apartment in Bushwick Brooklyn for almost three days. Tanya: You used dry ice? Amy: I left dry ice there but that particular gentleman was an advanced tantric practitioner. He visited with the Dalai Lama before his death. That gentleman was almost incorruptible. He was magnificent and knew how to die. And if ice was used, it was very little. Quite fascinating. But that was a great experience. But there have been other times where we brought deceased individuals into a brownstone in Brooklyn and laid them out in the parlor in the old fashioned way and then taken them back to the funeral home in the casket that night. So you're right, we have smaller living spaces, I think where the family centered funeral is really inhibited in New York and only at the point of families ever using their own cars or carrying someone out onto West 57th Street. That's not gonna happen anytime soon. I've had conversations with Josh Slocum about this. Much can be overcome that the city does pose some obstacles. Tanya: You mean just the practical realities of living in the city. Amy: I envy the Texans who can put granddad's casket in a pickup truck and take to the cemetery themselves. That's a tall order here in New York. We still have and that's why part of my business is rather conventional. I still use hearses and sometimes limousines. We have old fashioned cortège going to the cemetery and cars in sequence and all the old trapping, but New Yorkers still gravitate to that and want a little bit of pomp and circumstance. Tanya: So you mentioned witnessed cremations a couple of times. And I think that's really interesting to talk about. Because I've been to … Fresh Pond Crematory and toured that and that's a fascinating historical place that is really set up to and oriented to witnessed cremations for people from a whole bunch of different faith perspectives. I mean I think they've made a real effort to be to be inclusive in that way. But not every state has witnessed cremations or makes it very easy to have a witnessed cremation. So what do you think is valuable for families if anything about experiencing a witness cremation? Amy: Witnessed cremation has gone up a lot in my practice in the last two years. I think some people want to accompany their loved one the whole way as far as they can almost as if it's to the edge of a kind of grave they want of an experience. It's not that … I am careful with my language … it's not that they want it but they find benefit in the witness. What is a witness—it means that after the chapel service at the crematory or a funeral home, you can go to the area of the cremation plant or facility and witness the casket entering the cremation chamber or retort. The door is opened. Generally at Green-Wood the casket is on a lift, a hydraulic lift, it lifts up to the height of the retort and then the men gently guide that vessel into the chamber … Tanya: I've been I've been to the crematory at Green-Wood as well, and so the family is standing in a separate room, right? And so there's curtains… Amy: They’ve redesigned it. We’re going into the retort room now because it's so beautifully styled and designed. It's so beautiful back there. The metal of the doors is a kind of bronze and they're symbols of the world of antiquity back there that are very touching and moving. When that chamber opens you see a sort of arch of brick on the top of it and the glow of the embers. You don't see flames but if the family opts for this they can push a button on the wall that then lowers very slowly the door of the retort. It has a kind of magnificence to it. And certainly a finality. I don't use the word closure because there is no such thing as closure. You're going to carry this loss with you for the rest of your life. But it does make people feel like wow I took it as far as I could. I was with her every step of the way. And I was sort of available for every emotional aspect of this experience. People's knees buckle a little bit but they walk out of the room saying “Wow I've never seen anything like that before. Thank you.” Tanya: So that really challenges the notion that people are opting for cremation primarily because of cost. I mean because it was I guess it all has to do with the ritual that surrounds it because the pushing the button and the witnessing seems very similar to a graveside service where you're where you're putting a handful of dirt on the casket. Amy: Yeah. People want to do things even in a time of grief. And when I think of my male compatriots and my teachers in the industry who I love. I notice that in their lovely masculine way they've been depriving people of experiences because they feel that those experiences aren't good for them. And they say we will take it off your hands. We will do it for you. We are here for you. And it's very nice. And some families like that but increasingly families are saying “no we want to do that. We want to be there. You don't have to take it off our hands. We want to pay you to allow us to be there and be fully present.” Tanya: That we're going to get more value as a family from involving ourselves in the process. Amy: I recently had a group of people, a family, seated in the home with the deceased person present. They had on their own after death lit candles, put rose petals around her body, bathed her, brushed her hair, and then they were ready for me to come. I ended up coming with my own two man stretcher which is like a fireman's pallet. And I didn't call the man at the firm that I used to help me with these transfers. I went by myself and we were on the upstairs level of a two-story townhome and I said to the people assembled: “Listen, I thought about you guys, I knew that you have dressed her and cared for her and been here all this time. I thought that you might want to help me carry her out down the stairs.” Not every funeral director would be comfortable with this because there are liabilities, what if somebody stumbles. What if… it's always gone well for me, I don't know how to explain it any better, because it's like this family would have paid more to have the experience of carrying their loved one out of the house. That's an extreme example. But when we got to the bottom of the stairs we put this lovely woman, we covered her respectfully in gorgeous fabric. We put her in the back of my car. I closed the door. I turned to them and the gratitude was amazing to observe. These are very small ways that we can include families and continuing to love the person that they are now missing and help them in their adjustment to the new reality. Tanya: Let me ask you a final question for you but before we get to that this is sort of a mundane question. A lot of the things that you described doing do not fit with the general price list. Amy: Yes. Tanya: So how do you try to forge this new set of services? The gorgeous fabric, the involving the family, and transporting the body, the transfer process. A lot of these things that you're talking about—you did a direct burial not too long ago and there is a play list that you played. These are all services and incredibly important touches. But I'm just wondering how you reconcile that with a very formalized set of requirements imposed by the Funeral Rule. And then also sort of the established norms of how this industry works. Amy: I recently found myself standing in a Bed Bath and Beyond looking for some kind of piece of fabric or throw to put over a casket in the deceased person's favorite shade of robin's egg blue. And I stood there asking myself “how do I get this onto the Price List?” The GPL is not working for me. In time all I can imagine is perhaps getting so well-known for this kind of lovely series of gestures that I could raise my non-negotiable…my arrangements fee. It doesn't fit anywhere else doesn't it well. I mean there's no hourly wage, there's no funeral preparation hourly fee or something like that. I'm not able to monetize it yet. All I'm doing is building my brand and getting the word out that I'm available to you to do these kinds of things right. Tanya: Right. Because I mean the GPL is set up for … even though you still have this non-declinable fee for covering a lot of your profit and, you know, your services in the cost of goods. But if you're not doing an embalming that's out the door. Amy: The caskets aren’t expensive and they’re not marked up. Tanya: So that's a real challenge for people who are sort of pursuing a nontraditional kind of a path. That is much more service oriented. But the question is how do you accurately communicate the cost of those services to families. And right now there's transparency and fairness and that you're getting fully compensated for your time and expertise right and that they know what they're getting themselves into. That's the challenge. Amy: The guys at the funeral home watch me arrange rose petals in the interior of the casket where the deceased is never going to be viewed. They say, “Amy, just close the casket.” Well I want to finesse the shroud a little better. Yeah, I don't know. I mean I don't think I'll ever have any feeling of … I have to learn to protect myself, I guess. But I would love to sit down with others in the industry and figure out how we can offer these kinds of things and really save the funeral industry in so many words because it's not working the way it's set up right now. Tanya: So my final question is what sort of advice do you have for people who are considering following a path like you have. What have you learned? What would you do differently? Do you think that this is a path that others should follow? Amy: I think there are so many opportunities for thoughtful people in this business. And it's such fulfilling work. I would never discourage anyone from getting into it. However there are so many impediments and barriers to entry and hoops to jump through. My husband used to watch me studying late into the night in mortuary school and he'd say “honey this is like a hazing. I can't believe this. You know you want to just do good funeral services why are you having to memorize every bone in the foot.” So one thing I do say is that you really have to want to get into it, if you're in any way unsure then maybe it's not for you. It tends to be a business that is so hard to enter that you really have to want it more than anything else and almost see that there's no other path for you. If that requirement is satisfied then go on, get through the school that will maybe be one of the worst years of your life. But it's only a year you'll get through it. You'll be proud of yourself. Your family will be proud of you. And then try to negotiate the best residency you possibly can in those states that insist upon that yeah. And the embalming requirements are really tough and each state is different. So I was advised to just show my boss what I was good at. And I think he acknowledged after about four months of having me back there in what is known as the pit that really wasn't my gift. So I got through that part with all the legal requirements for residency and licensing in the state of New York and it's good to know a bit about embalming but I don't want to say it's going to be obsolete. There's always going to be a call for it but I don't know that the emphasis in the in the mortuary schools needs to be so focused on it. Tanya: Well there's definitely been some studies have indicated that the number of women who are interested in becoming funeral directors is artificially depressed by the embalming curriculum. Large numbers of women have said that they would be much because they're more interested in the I guess you call “front of the house.” Amy: Right. The suits, yes. The people who want to sell the funerals. Tanya: Well or just be involved in the experiences and helping people have a meaningful experience and funeral but they're not interested in the embalming side of it. And so coupling those two different professions into one. And the requirements to become both into one has cut down on a lot of people who would probably be pretty funeral directors Amy: Yeah, yeah. I am finding that the men in the industry I'm around are very moved by what I do and don't criticize me or make fun of me in any way at this point because they see that this is sort of why they got into the business themselves in the first place. I help remind people of the gorgeous nature of this work. And I think we all need each other and can work together and make for a new way for families to say goodbye. Tanya: Well I think that you are an absolutely inspiring funeral director and you're so positive. And that we could all learn a lot from the experience that you have and what you're trying to bring to families. Amy: Thank you thank you so much. You know by the way I have a blog that I write with Kateyanne Unullisi, a Seattle funeral celebrant, called The Inspired Funeral. And a lot of these ideas are on there. We divide the whole end of life period into nine different moments and we have readings for each of those moments and a lot of good material. Tanya: I'll put that in the show notes. Amy: My life as a journalist continues. Tanya: Awesome. Thank you so much Amy. Amy: Thank you.

Join Flo and Carra as they fact check the Wakes episode, and as they talk about the wonderful @FuneralConsumer Josh Slocum, the brilliant Dr Karen Smith (ethicschick on Facebook) And how wonderful the Funeral Consumers Alliance is! Check them out at Funerals.org

Guest Josh Slocum is Executive Director of the Funeral Consumers Alliance. This is a not-for-profit organisation in the United States dedicated to protecting consumers rights to a fair, dignified and affordable funeral. When it comes to funerals - both Ireland and the US share many of the same issues. Funeral poverty is a growing problem in Ireland as the cost of a funeral can come in much higher than a family anticipated. With the result that families can end up paying off a funeral debt for years to come. Josh shares his insights into how the American funeral industry works and great advice on saving costs. funerals.org www.facebook.com/funerals.org www.twitter.com/funeralconsumer

http://www.facebook.com/funeralnationtv - We interview Josh Slocum of the Funeral Consumers Alliance about the shocking results from their recent cremation survey, our spotlight shines on Iowa, and our #WTF looks at things you see in the drive-thru. #funeralnation #thefuneralcommander #funeralnationtv

funeralnation.tv - In this episode we go head to head with Josh Slocum, executive director, of the Funeral Consumers Alliance. We ask Josh about the FCAs call for funeral home pricing transparency and if funeral homes should consider the FCA the enemy. Our WTF segment features advertising genius! Don't forget to join us in support the Poul Lemasters Coat Drive. There is only 9 days left to get involved so don't delay: gofundme.com/funeralnation Like us on Facebook: facebook.com/funeralnationtv Follow us on Twitter: twitter.com/funeralnationtv

 Edward Salisbury  multiple NDEs includes  the sudden drowning death of  first wife, the dying process of  his parents, the suicide of his daughter, and a recent 'dance with  mortality' in his Prostate Cancer surgery.   Managing a Home Health care agency, advising on community and international Boards of Directors, and presenting programs, workshops & courses about grief, loss, death, healing and self care; I have enjoyed facilitating a healing grace in many lives.Active with Hospice programs, Funeral Consumers Alliance organizations, and many Grief care programs; I am able to be 'present and wise' as we navigate the challenges and opportunities that arise in the processes of completing our lives.Making our own MEDICAL DIRECTIVES and FINAL ARRANGEMENTS can be the greatest gift anyone can give to their loved ones. I will guide you in the choices and options that will maximize your experiences and minimize your difficulties. Cheryl Mackin-Salisbury is a doctor of chiropractic and naturopathy practicing in Austin. A two time  NDEs ,Cheryl broke her neck (a closed-head-injury) in a flip-and-roll car accident. Her latest experience was drowning in deep water ocean off the coast of Oahu, Hawaii. Her body was ripped, torn, and beaten before she was sent back—this time with physical proof that other beings do exist in other realms.Her most recent drowning experience allowed her to ultimately meet her soul twin, whom she had been crossing paths with and having like experiences with for 50 years. Her work has been influenced by Jean Houston, Shakti Gawain, Louise Hay, Depok Chopra, native American Ceremony, the Center for Attitudinal Healing    Caribbeanradioshow.com caribbeanradioshow@gmail.com "what is life after death" , "bad NDE","nde.com""Life after life ","Near Death Experience"