Episode 60 - Dying to Talk: Exploring Death through Cards, Care, and Cafes

Welcome to Caregiver Relief, the podcast where we venture into the often unspoken realm of aging and mortality with honesty and openness. Today's topic, Dying to Talk. Exploring death through cards, care, and cafe. We invite you to delve into the profound intersection of life's final chapter and the transformative power of conversation in in illuminating its path.

I'm your host, Diane Carbo registered nurse, and I have a deep seated commitment to navigating the complexities of health illness and the journey towards life’s end. And today, we are very privileged to have two remarkable guests with us. First, we welcome Lisa Paul. She's a licensed certified social worker. She's a trailblazer in the conversation on death and dying.

Lisa's extensive background in social work, particularly in hospice and emergency medicine, has culminated in the creation of the Death Deck, A game that fosters open and meaningful discussions about the end of life. Her belief in the cathartic power of the dialogue has made the Death Deck an invaluable resource for those seeking to find peace in life's finality.

Lisa's professional journey enriched with experiences in community, mental health. Domestic violence and trauma has led her to discover the precious nature of life in the stillness beside those at the end of their journey and their families beyond her professional endeavors, Lisa finds balance and joy in the serenity of nature from kayaking after whales to savoring moments with her family and her playful cats.

We also have joining Lisa in today's episode is Alicia Heard. Alicia's academic background includes a BS in Elementary Education and Behavioral Studies, a foundation that has informed her compassionate career and caring for emotionally disturbed and behaviorally challenged children.

But Alicia's expertise extends far beyond the classroom. She has been the lighthouse in the storm for her family. Acting as the primary caregiver for her mother, then her mother in law, and most recently her father. It is through these profound personal experiences that Alicia found her calling as a death doula, as well as a caregiver coach.

Roles in which she supports individuals and families during their most vulnerable moments. In addition to her invaluable work, Alicia is a regular contributor to Caregiver Relief, where she shares her insights and supports others with her wealth of knowledge. Her dedication to caregiving has also led her to become a coach guiding others through the complexities and challenges of this critical role.

Together, Lisa and Alicia and I are going to offer different perspectives on the end of life experience. One through the lens of an innovative communication and other through the heartfelt caregiving. As we gather here today, let's extend a warm welcome to both Lisa and Alisha. We're set to embark on an enlightening journey, uncovering the peace that comes from understanding and embracing the end of life as an integral part of our human experience. Lisa, I want to thank you for your groundbreaking work with the Death Deck.

And thank you, Alicia, for your compassionate guidance as a Death Doula. We also aim to shed light on what a Death Café is as we explore our roles in society. So I want to start this important conversation to discuss. And we're going to talk about how embracing mortality can enrich our appreciation of life itself.

So Lisa, I'm going to start with you first. Can you explain the concept behind the death deck and what inspired you to co create it? Yes. Thank you again, Diane, for having me here. I'm excited to be in company with Alicia as well. We began, so I have been a hospice social worker for about 17 years.

A few years into my career I met Lori. Lori is the wife of Joe. And Joe was on service with us for about two weeks and two days. And so I was the hospice social worker that helped Lori and Joe and their two young children. He died in his early forties and I provided bereavement support afterwards.

And then Lori reached out to me a few years later and we met up for coffee. And we started talking about how many things Laurie wished she had known about what Joe would want at the end of his life. And through my work in hospice and emergency medicine I have seen that most people aren't prepared.

And so even if they have documents in place, like Laurie and Joe did, there were no conversations about All the nuances related to end of life care, as an example, did Joe want to use all medications to keep him as comfortable as possible? Or was it more important to be as alert as possible? And so these were some of the questions that we began talking about and we started looking at what tools were out there to help people have these conversations and we found some great ones.

But they seemed a little bit more touchy feely and loving, which is amazing. But we were looking for something a little different. How can we get younger people? How can we get people of all ages to start talking about death and dying? And so we decided, let's add a little humor. Let's add multiple choice questions.

That way, people have an easier time engaging in the topic because death to most people is scary and the topic is avoided. And so we just want to help people begin having these conversations so that when they have a. When they are confronted with a terminal diagnosis or a medical emergency, they have some understanding and their family members have some understanding of what they would want.

I love your concept. I want to share a story about my dad. My father went into the hospital all jaundiced and was not feeling well and they did a Whipple procedure on him, which is a really challenging procedure for anyone to go through. And he was diagnosed with pancreatic cancer. Now my dad is a, was a letter carrier, a postal carrier, and he sat in while the doctor told him, Lee, you have less than six months to live, the first thoughts of my dad were every year, every other year, he went to Hawaii.

We, we're from Pittsburgh, Pennsylvania, and every year, every other year, He would go to Hawaii. He got a timeshare there and he would go for six weeks. And I'll never forget the look on his face when the doctor told him that he had less than six months to live. And my dad said, Oh, I'm going to have to give up my Hawaii trip.

And I, here's me, the smart aleck, hardcore nurse, saying, dad, you're not dead yet. If you can go, we'll get you there. I said, do you care if you die there? And he goes, no. I said it's solved. If you're well enough to travel and take the plane trip, I'll get you on hospice over there. And that's what we did.

And I want you to know that when he got over there, because I'm very open about it, and I'll explain why in a minute about death and dying, but my dad went over to Hawaii, had this amazing spiritual healing and felt so well that they took him off hospice after 3 days there. And he was there for the full 6 weeks, and the day before he left to come home, he started feeling.

Not unwell. aNd I, the reason why I was so excited when I saw the death deck was I, my mom, when I was a junior in high school was going to have had to have gallbladder surgery and it was at that time they detected she had lung cancer. Now, my dad is, the old Navy guy, the letter carrier, the staunch, we don't talk about this and I'm the oldest of four.

When my mom was going through her cancer treatments, I'm the one that took care of her. I'm the one, I became the family caregiver at 16 and 17 and we weren't allowed to talk about it. Say the C word we weren't allowed to have a discussion about death and dying We were not allowed to do any of that and the irony here is my mom Went to the oncologist after all of her god awful Terrible treatments, you know the cobalt at that time and the oncologist said to her Louise you beat cancer You're gonna have a Christmas and it was So my mom, I'm a freshman in nursing school, and I'm strict right across the street at the nursing school of the hospital.

My mom is on her way over to tell me we're going to have a good Christmas. We have a lot to be thankful for. And on the way down in the elevator. Just leaving the oncologist's office, she threw a pulmonary embolism and was put in intensive care, and she died that night. I am I'm very open and blatant about death and dying, and I thought the death deck was just.

A an impressive way to open the communication, open the lines of communication on a difficult topic. Lisa, could you share some particularly memorable moments or conversations that arose from using the death deck?

Yes, one very memorable one is that I take the death deck everywhere I go and I even have we put 10 to 12 on a little rings so you can flip through them 10 at a time and then you can throw them in your purse. And so I was carrying around some rings in my purse and I brought out the death deck at this, my neighborhood wine bar that I like to go to, and I started asking people questions and and, initially people are looking at me what is this girl doing? And then I, there were so many amazing stories shared. One gentleman talked about his wife who was on hospice. He was currently a caregiver and he had just slipped out from his caregiving duties.

His brother had come over and relieved him. And so he had come for a drink and and it became such a lovely community of conversation. And then this other young couple was at the bar and we're having this conversation about advanced care planning. And they told me. Before they left that that during the appointment they had reached out to an estate planner because they realized that they really needed to get a living will because they have two young kids.

And so those moments where people, the two things I love most are these deep connections that we have when we talk about This topic, because it's so soul affirming, and it's so validating for people to be able to share their stories and also what they think and believe on this topic that no one talks to them about.

So I love the connection and community that comes from that. And then the second piece is I love when people take action, you know that this inspired them to be better prepared because that's exactly what we're trying to do. Yes, that's an example for you. I can tell you as a nurse who worked at a world renowned cancer center, I brought up the topic of hospice and death and dying to a young woman who was not long for this world.

And I got fired for bringing the topic of hospice up to her and I felt so bad, but I've learned that it's, in the cancer centers, it's not about being open and honest, it's all about research and money and finances.

And that's a whole another topic, but it's just sad. People aren't given choices. Especially in the cancer centers, they'll and I believe that everybody has a choice to make their decision on whether they want treatment or not, and how far they want to go, but the doctors don't care if they disarmed, were inhumane in their treatment and, people end up not being able to eat and all kinds of things, but they beat cancer and it's, it makes me sad. So I'm a person who's, hey, I lost the job. Yeah, thank God I'm a nurse so I could get another one because I was open and honest.

So I have a question for you Lisa, in what ways do you think society's attitude toward death and dying needs to change? And how does the death deck contribute to that change? Yeah, I think we're making a little progress, I think with so many people interested and becoming death doulas and end of life doulas, which I know, at least she's going to talk about that's helping further the conversation.

We're seeing even articles in people magazine about hospice nurses. So I do think that we are. Starting to be slightly more open and talking about death and dying, but in general, but I also know that my view is a little slated because I'm in this space. And so sometimes I think that everyone knows things and they don't.

That part is true too, but I. People are afraid to talk about difficult things overall, money, taxes, sex, relationships, we, it's hard. It's hard to have conversations that make people uncomfortable. And and we tend to avoid it. And I think there's a lot of generational teaching that goes on about death and dying.

And so if you weren't exposed to death and dying as a kid, you may have, pretty significant fears about that. So in general, I think we, we are still a death avoidance society. I think we still are referring to hospice late. Way late, way, way late. It makes me sad. Yes. But we are trying to bring death into the community.

So last night, we hosted a death over drafts event at the brewery down the street from me. Wow. That's cool. And we had about, we had a good 30 people show up from the community and we Which was wonderful, and so I had a microphone, and we're at a brewery, and we're talking about death and dying, and we had people come up and tell their stories it was really moving, and the feedback that we got from the people who weren't part of the party the bar goers, they kept finding us and wanting to tell us their story It's moments like these, I do a lot of community engagement and education.

I, I talk at libraries and senior centers and all these spaces to try to increase education and understanding of ended life. And we are using the death deck and our new deck, the EOL deck. Which is our deck for people with serious illness. So our EOL deck, we launched last year and that one is our more sensitive deck.

So between those two decks, depending on the group, I'm speaking to these different communities about death and dying and trying and doing it in a way that's a little less scary because we're using we're using friendly cards. I have to tell you, I come from a very large Irish family on one side, my mom's side, and my first encounter with death.

Was my a neighbor, Joey Buffalo. I can still remember him. I was in 2nd grade. We'd all gone receive communion for our 1st communion. And after that, Joey was diagnosed with leukemia. Now, here I am a little kid and he died and his family was Italian. And this is in the 60s, 1960s, and it's in Pittsburgh and they had him laid out.

In his home in a coffin, and that was my first real experience. My mom, I, she, I said, I'm going to go over and see Joey. They have him. He's laid out. I didn't have any thought as to what that meant. But I remember going over there and feeling incredibly sad that they had lost their child and I had lost my friend and a few months later, When my grandmother died, my maternal grandmother, and the Irish, it's, we embrace and celebrate life.

When my grandmother died, and I have a huge Irish family, we're standing around, we're talking, of course, you always go to the home and you do it for three days. It's exhausting. It's exhausting. And you sit around and you talk and you drink and you eat and you just remember you, you hold those memories and I'll never forget when my mother died, my, I was engaged at the time I was well, no, I wasn't engaged.

It was my boyfriend. We got engaged later. It's the guy I married. He was so offended. He had never been around death and dying. He was an Indiana boy. And he was offended that we were laughing and giggling and talking and crying and just celebrating my mom's life as well as trying to hold on to memories because, we were losing her through death and I was shocked because that was my first experience with somebody who's Oh, you celebrate life And he really had a hard time handling that and he left in a tib tither.

He was like, I'm out of here. I can't deal with this. He was better. I have a, an old, my oldest son was a disabled vet with a terrible pain condition called chronic regional pain syndrome. And the. substandard and abusive care by our veterans hospital or medical military medical delivery system.

He committed suicide. It was he attempted once and then eight years later, he was successful. And that takes you to a whole nother ball game and stigma. So I'm very open about death and dying and the trauma because I still have complicated grief from not Being permitted to talk about my mom and what I was going through the fear I had.

I really appreciate what you're doing. Can you, I'm so sorry. I'm so sorry about all your losses, but particularly your son to suicide. That's that's an extremely difficult. It is and, it's such a stigma, and as the mother you're looked at and I get all weepy even still now it's 12 years.

People blame it on you, and that's a whole nother ballgame. People are one thing I experienced with death and dying with both my mother and my son is that people have a tendency to avoid you. After the death and after everything goes on. And that is so hurtful and harmful. What do you think I'm going to do break because you say the wrong thing?

And I'm like, I, I just sometimes just to make people feel uncomfortable and I do that. I'll say. He died. He killed himself. What can I do? There was nothing I could do. He was in pain. And the other thing I find offensive is he's in a better place.

That may be your response, but that's not how I feel. I feel like we failed him. Our medical delivery system failed him. So I really excited about the death deck and I'm really. I didn't know about the EOL, is that what it is? End of life, EOL. Oh, and oh, geez, end of life.

Yes. I've got to learn more about that in the future because I think one of the things we do, I have an elder care communication course and I address, it's like a 20 lesson course and I break it down into the challenging and difficult topics because people don't know how to have those conversations.

They really don't Lisa, can you tell me how healthcare professionals can benefit from using the tools like the death deck in their practice? Yeah so we have found with our original product, the death deck people are using that for advanced care planning activities for estate planning for and with And you can use the death deck with people who are not approaching the end of life.

Because we use a lot of humor, and the questions have such a range of topics, I don't really recommend it for people who are approaching end of life. That's why we created the EOL deck. Because with that, there's just a touch of humor, like a tiny bit of sassy grandma. So it's mostly just a casual tone.

And we go really deep into end of life preferences, all the senses. We have a There are multiple choice questions. So what would you like to hear? And we give some ideas of what people A, B, and C, what they might want to hear in their final days, how comfortable they are with touch, how direct they would like medical professionals to be with them.

If they have a pulse, if that's something they would consider. So we do a lot of education within the cards to explain what a post is, palliative care, hospice, and then ask people their thoughts on these topics. So it's a great conversation starter for people who are either aging, where we want to be a little more respectful or people with serious illness that, we want to be able to begin.

These conversations and what I found as a hospice social worker, I don't tell them that I created the deck. Because I'm still working and that's a conflict of interest. I just tell them I have a deck of cards and it's so helpful for me, even though I created these questions to have that little to have the card in front of you, it makes it feel like I'm not asking these really intimate questions.

And so the feedback we've been getting is that it's helpful. It also gives the person something to hold on to and look at and it's, it just makes it slightly less vulnerable for the patient that they're working with. While you're invoking or utilizing all the senses. Sight, hearing, feeling. I want to stop you just for a minute, Lisa, because I want to explain to our listeners what a POLST is.

They may not be aware of it. It's a P O L S T, and that's Physician Ordered Life Sustaining Treatment, and that is a portable medical order written by a that will Tell the person of the first responders if they're called to the home, what treatments can and cannot be performed on the patient according to their wishes.

This is not like a DNR because a DNR or an advanced directive. If you're called to an in an emergency to a home, and a person has a DNR, it is not honored by first. Responders or the hospital, because they have to act. If you don't want, in fact, I just recently got a post for 2 90 year old clients of mine, because they were worried that if they fell and they.

They didn't want to go to the hospital, but one of them called or somebody else called in the family. They would be, and it happens all the time. People feel helpless. They want to call and get help and it's the right thing to do. But then all their nothing's honored. So I just wanted to address that. so That people understand there is a difference between a pulsed and a DNR.

It's all complicated. Yes, thank you. Oh, thank you. No. I appreciate it. You know what we forget is healthcare professionals what we know and what others don't. I know I deal with it all the time. I've been working with family caregivers for. I'Ve been a nurse for 50 years, so it's been a long time.

Now, Alicia you're on the rack now. I'm up. Yes, you're up, baby. Now, can you explain to the audience just what a death doula is? A death doula is somebody who helps A person who is nearing the end of life at the end of life been diagnosed with a terminal illness to reach the end of life with their wishes in place with to achieve their idea of a good death where they're to help the individual as well as their families so often.

You'll have a patient not have their wishes met either because the family members get involved or something happens within the health care system. And all of a sudden, these patients who wanted to be on hospice and pass at home with X, Y and Z happening are suddenly in a cold, sterile environment. At the hospital with no family around or family that honestly they didn't like and didn't want to be around with and the role of a death doula is to help a person come to accept death, come to understand death, prepare for death, everything from advanced directives, getting their legal affairs in order to planning a vigil service.

For when they are actively dying to planning legacy projects working with the family about education on what a dying a death looks like when a person is actively dying, I think that's really important because I'm always coming across of caregivers that. The family member, the aging family member, or the dying family member wants to be put on hospice, but then all of a sudden you have a situation where the family say hospice is killing my mother or my father and I'm like, I have come across it so many times in my.

In my career, where the family doesn't want to take their family member off life support because they still have hope, even if it's an older person and they don't get that, the brain isn't functioning that they're never going to come back and, they don't understand the difference from life sustaining treatment versus.

Life X, just life extended or curative measures, if you will. As a Death doula, what does your role entail? And how do you support individuals and families through this journey? I'm sure you're challenged every life situation stage is challenging. We, there's no easy way to get out of this, every individual is different. Everybody's needs are going to be different from the beginning. You find out what your person wants and needs. Some people may need help with the legalities with the paperwork part of it. Some people may need help. Planning the funeral, planning the services, planning legacy work, planning things of that nature.

Other people may want to plan the vigil services. They may need the emotional support. They may just want somebody to sit with and talk to about death and dying and the afterlife what they could expect. Their own life, they just may need somebody there with them. They may need help with family intervention.

Some families don't know how to handle these emotions because when they have a loved one dying, everything comes up and it's not always. It's not always pretty, things can turn hostile and big Irish family. I can tell you things got hostile. Often. I was myself when I was caregiving for my mother in law.

I was in a very difficult environment. Yes they may not. Understand hospice or hospital. They have to educate on a lot of different areas. I believe our movie industry, our entertainment industry has glorified death, which is sad because people aren't beautiful and perfect and they don't just go to sleep and.

And then, and they never wake up. It just doesn't happen like that. I'll know. No, it doesn't. I'll never forget this very good looking, handsome 35 year old man was at in the cancer center. I was working at and he, his initial diagnosis, what hit? I can't, it wasn't glioblastoma, but it was some kind of brain tumor that was inoperable.

And when he came back in a few months later, his head was distorted. His body was huge from steroids and he was just you didn't know who he was except for his personality. You didn't know. I'll never forget. He's laying in his bed and we're talking about hospice with him and his wife and his mom and dad.

His wife was pregnant with their first child, so I get all weepy about this, but he said to me, Am I going to look like this when I die? Aren't I going to go back to my normal self first? I was like, Oh, and I actually had another patient. She was beautiful. She had beat breast cancer once. It came back. And do you know she was so vain.

She kept it the second. Round of cancer, breast cancer away from her family until it was beyond treatment because she didn't want to lose her hair and look terrible before she died. And the way that we approach this is she wanted a special designer head stone. She wanted a special casket. That was her way of handling her death and dying process.

And that's her way. And that's perfectly fine. Exactly. I'm hearing more and more about the life celebrations that people are having instead of a funeral. And that would be me. Come on. Of course, I'd want to cook and make all the food. And that's something, that's something too, people are doing that a lot more because one they want to be involved.

They have these ideas and they want to see it come to fruition. And a lot of people just think, if you want something done you got to do it yourself. So they want to do it themselves. But I think it's a great idea to get everybody together, one more time. And I see everybody because it's so often you only get together when somebody dies or weddings.

Yes, or weddings. Yes. Yes. People don't even gather for births anymore because we don't have enough of them. But, so I'm really I know when we had my son's funeral, it was a military funeral and I was, I'm totally in shock. And I, everybody was shocked because I said, of course, this is the husband who walked out when my mom had died 15, 20 years earlier.

And I said, we are going to, I want everybody to come to the house. We're going to have amazing food. And I just want people to celebrate Jeff's life. Remember him for who he was and what he accomplished in his short time with us and not to think about the bad. My, my husband, now ex husband was upset at first and then he goes, all right, have it your way.

I was going to anyway. I, I wanted to do what was best for everybody. So I have a question for you Alicia. How do you think society can better support caregivers, particularly those for caring for someone at the end of life? Oh, my that's a heavy question. I know when it comes to caregivers and support, there can't be enough on any level.

I know. And we really, as I said, that society let our family caregivers down. Side note, Death doula is also provide support for caregivers that comes on an individual choice, but. They can do anything from overnights again. It's a personal preference for the doula to, giving them a night off and sitting with the individual.

But as a society, we've really lost the concept of. Community of pulling together of the village system. And I think we need to bring a little bit more of that back. I think when, someone's. Having a tough time and, like we do when someone has a baby, you bring over a casserole, you do a little laundry, you come sit and hold the baby.

So they can take a shower. I think there would there's there should be a little bit more of that. Stuff involved, and it doesn't have to be staying for a whole night so that they can go out and about. It doesn't have to be, letting them go get a pedicure and get their hair done simple things like bringing over a meal or letting them take a shower or even sitting with them and having a cup of coffee with their loved one just to provide extra support and.

A conversation yes, because being a caregiver is very isolating and the isolation can be very intense and it's not good mentally. There's. I think we need to have more resources put in place on local levels as well as state levels as well for the caregiver things, such as.

The thing, things like funding and respite care and, maybe transportation, I

don't even know. There's so many things, things like meals, something like meals on wheels could be involved, yes, if the person dying can't eat, at least the caregiver can. Oh, I didn't say that, did I? I've seen it's necessary. God bless. It's necessary because the caregiver, when the person is dying, when I was taking care of my mother in law, I was her hospice caregiver and they were phenomenal and that one experience is what made me decide to become a death doula and, but she was being cared for.

Okay. Okay. Okay. But I wasn't, because I have no time. I have no energy. I had no desire because I needed to be with her. I needed to be with her for several reasons, and it would be great for somebody to bring over food for the caregiver. I have another question for both of you, so you can take turns answering it.

What can we learn from different cultural attitudes towards death and dying? Lisa, you probably have had a lot more experience with different cultures because you have been in the field for so long in hospice. Yeah. I think there's so many fascinating differences among cultures here in the U S we, as we talked about before, tend to be death avoidant, but other cultures are doing a better job of being more open about death and dying and have different, there's a lot of differences in burial or disposition.

Yeah. Yeah, afterwards. So I, what I love about my hospice role is that I live in the LA community. And so I get to go into the homes of lots of different community members. And so that the cross cultural experience means that I Just like with everyone, I'm meeting people wherever they are, and I am asking a lot of questions.

And I think This is one of the ways to for us to be culturally sensitive and appropriate with our clients is to be asking them because we also don't want to make assumptions because in, in Chinese. Beliefs, you're not supposed to talk about death. It can make it happen.

And so being mindful of some of these things, right? But also checking in with the family and being comfortable enough and learning how to ask questions in an inappropriate way to say, I know that traditionally, this is the belief, is this how your family operates as well? And how would you like us to navigate that together?

Because we all know what's happening because the person's on hospice. But yet, I want to make sure that I am being that I am upholding your beliefs and not causing distress by Talking in a manner that isn't consistent with that over my 50 years of nursing, I've experienced some beautiful death and dying rituals from different, the different cultures and, the, the Jewish, the Jews have this beautiful process. They, they sit Oh, it just went out of my mind. Shiva. Thank you. Yeah. Thank you. They said, I had a senior moment. They sit Shiva. And one of the things that I loved about this, the one service I've been to several, but this one service, they drove the casket past the house.

It was beautiful. As a way to say goodbye for the last time, and so they went from the temple or the synagogue past the house before they took them took Joe to the burial plot. And I just thought that was just a, it's a touching moment. And then I had the experience of a Chinese family. The the I went to a service, they had their visiting services and I was, they were all sitting vigil and that was an impressive thing.

And then I've been to the Italians where they have their professional warriors and, they're weeping and crying and it's Oh everything about each culture brings such an amazing sense of finality or. It gives a connection to the next world and I really appreciated that.

I think that we in healthcare the professionals, except for people in hospice, I'm going to qualify that are ignorant or unaware of how the cultural differences. And our assumptions can negatively impact the experience of the death and dying process. I've seen that happened as well.

So I'm going to ask you both. How has your work in the field of death and dying influenced your personal views on life and mortality? Alicia, I'm going to have you answer that 1st, and then I'll have Lisa answer it.

Well,

it's inevitable. We're all going to die. Yeah, just like we all live and we only get one shot at it.

To just be frank, it's going to be hard. It's going to be challenging, but there's going to be some incredibly powerful moments, some incredibly beautiful moments. And there's going to be some very scary moments too, because you're uncertain and we don't know what's coming up ahead of us. We don't know what's happening tomorrow.

And that's the same thing with death. We don't know what's really going to happen. We don't really know. What's on the other side, but we do know it doesn't have to be ugly. We do know it doesn't have to be painful. We do know that it can be calm and relaxing and so full of love. It can be a sacred event.

I like that perspective. So Lisa, how has your work in the field of death and dying influenced your personal views on life and mortality? I Like what Alicia said, because I think people people imagine what you imagine is typically worse than what. Dying really looks like especially when you have support in place.

So I appreciate your comments, Alicia. For me, part of the reason we created the death deck was to increase mortality, awareness, mortality awareness, and to help people recognize that if we start living as though we are going to die one day, which is in fact true, if we are mindful. And I know we use that term a lot now.

But if we are thoughtful if each day we actually think about the fact. Like for me, I probably am over halfway through my life right now and thinking about that and knowing that there's going to be some health decline and all these other factors, it gives me this feeling of. There's so much I want to do, how can I make the most of this, it's the Mary Oliver, this one beautiful ride.

How do you make the most of this one beautiful ride that we have? And I think it can be really inspiring. And if you live your life thinking about what will people say about me when I'm dying, that can also help you live with the values and and legacy that you want to create. I Like that. I like that a lot.

So I want to talk to you. Finally, for both of you, I have a question to ask. How do you both find joy and meaning in work that is centered around death and dying? I find the beauty in it.

There's a lot of things associated with Death and 1 of them is life when, that is the end and you've seen a lot of death. I had a lot of death happen starting very young in my life. And I've seen multiple types of death, natural death, cancer, domestic violence. Suicide murder, everything and it all comes with it's different types of grief and planning processes and family moments and just so many it's all different.

And within those processes. There's so much beauty to be found. You have such profound thoughts that happen about yourself. You learn so much about yourself. You'll learn so much about family members. You can see beautiful pictures in different lights, a simple. Object that belong to the loved one, like a T shirt or, a guitar or a CD becomes so much more special and you in turn gain so much more appreciation for a sunset, a cup of coffee, a walk in the park, that trip to the beach going to Alaska because that's what they always would have wanted.

It makes you appreciate. Everything's so much more. I have to agree with that. My my son died 12 years ago and I still have, he was a big ginger guy. Beard, he was a soldier. He was strong. And I still have, and I wear it. It's a big bulky blue hoodie sweatshirt. It's way too big for me.

I don't care. I just feel like when I need to be around him. I put that on. That sounds silly, but it makes me feel better. It's absolutely not silly. I think that's fabulous. Some people think, Oh, you're just corny. Yeah, I am, but we all find comfort in the little things. And that's, I think, really important.

Lisa, tell me, how do you find joy, especially the turnover rate and the burnout rate in hospice is huge because it's so emotionally draining. How do you stay upbeat and how do you stay on top of things and enjoy life and not be a Debbie Downer every time you turn around? A couple of ways.

I think. Similar to Alicia, I get to witness a lot of beautiful and powerful moments. And I go into all these homes around LA and I find that people are good and people are taking care of each other and people are loving on each other. And it's actually really life affirming to watch families come together and take care of one another.

Yes. It makes me feel really grateful for my help. And it helps me With that mortality awareness that I was talking about earlier, where I feel like it actually helps me live a happier life to really be working in death and understanding that this time is so precious. And then the other way that I.

I cope is I do all this community education and engagement and I take a more macro perspective because I think sometimes if you're just in the weeds and you're just like patient after patient and you don't scan out and see the big picture and what we're doing collectively, it, it can get, it can lead to burnout.

And so I try to go wider and do more of the educational piece to balance some of that bedside time. And I saw in your bio that pickles and peanuts are your cat. Our cats provide a lot of comedic relief in our house. Alicia also has a cat, Ella, is that her name? Alicia? Ella, yes. Yeah, and she's in heat right now and she's going

She's been quiet for this whole thing. God bless her. Ladies, I really want to thank you for joining me today. I, it's a difficult topic. And I think from my perspective with what's going on in the world, it's just nice that we can change our part of the world and. Those around us and help them get through some very difficult, challenging times, I'm going to put contact information on how to get the death deck game on the website.

And Alicia, I'll put your contact information for those living in Connecticut that, or anybody wants to do death duel of the tele visit. That's fine too. Thank you ladies, and for the family caregivers out there, remember you are the most important part of the family caregiving equation. Without you, it all falls apart.

So please, learn to be gentle with yourself, practice self care every day, because you are worth it.

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