Afford Anything - Can You Really Afford to Die? - with Hospice and Oncology Nurse Suzanne O’Brien

Episode Date: May 9, 2025

#606: Hospice nurse and end-of-life educator Suzanne O’Brien joins us to discuss the financial realities of dying in America — and they might surprise you. Remember Aretha Franklin? Her handwritt...en will was found in her couch cushions after she passed away. Despite her substantial wealth, this simple document was legally upheld. It's a powerful reminder that having any form of will is better than none at all. But there's more to worry about than just having a will or trust. The costs of aging and dying can add up fast. Long-term care costs can quickly deplete even substantial savings. Suzanne shares a story about a couple with over $5 million who were shocked to learn how quickly 24/7 care for dementia would consume their nest egg. Traditional funerals average between $7,000-$11,000, but there are much more affordable alternatives: Home wakes and natural burials can cost just a few hundred dollars Water cremation offers an environmentally friendly option Whole body donation to medical institutions costs nothing while contributing to education Planning ahead gives you control over these decisions and spares your loved ones additional stress. Multi-generational living arrangements can also reduce caregiving costs and address concerns like isolation and safety for aging family members. Suzanne also shares stories about the emotional side of dying. Did you know some people seem to choose when they go? She tells us about a 99-year-old woman in a coma who somehow held on for days until she turned 100, then passed away that very night. Resources Mentioned: Anatomical Board of the State of Florida » College of Medicine » University of Florida US Programs » Anatomical Board of the State of Florida » College of Medicine » University of Florida NATIONAL HOME FUNERAL ALLIANCE - Home https://affordanything.com/episode606 Learn more about your ad choices. Visit podcastchoices.com/adchoices

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Starting point is 00:00:00 Can you afford to die? It's a jarring question, but it's one that everyone needs to start asking themselves because end of life and dying is very expensive. And so planning for the end of life, it's not just about emotional preparation, but there are also huge financial implications that many of us overlook until it's too late. And when we're in those moments of high stress, well, that's the worst possible time to start thinking of it. Today, we're talking to an end-of-life care spend. Specialist, Suzanne O'Brien, she is a hospice nurse and an oncology nurse who now runs an institute teaching people about end of life matters. She's also the author of a book called A Good Death. We talk today about how to financially prepare for the end of life. We discuss everything from the huge costs of long-term care to more cost-effective or budget-friendly alternatives to traditional funerals. So whether you are thinking about your own arrangement, or whether you are helping aging family members, there are financial takeaways that can help you make more informed choices that could save you thousands of dollars and could reduce a huge amount of stress during one of the most difficult times.
Starting point is 00:01:16 Welcome to the Afford Anything Podcast, the show that understands you can afford anything but not everything. This show covers five pillars, financial psychology, increasing your income, investing, real estate, and entrepreneurship. It's double eye fire. Today's episode, we talk about how to live a better life today is about that first letter, the letter F. Although really it's got two meanings today.
Starting point is 00:01:38 It's financial basics because end of life planning is a basic form of financial planning. And it's also the letter F for financial psychology because we talk about what we can learn from hospice patients in order to lead better lives today. With that said, enjoy this conversation. with hospice nurse and oncology nurse, Suzanne O'Brien. Suzanne, welcome. Thank you so much for having me. Oh, thank you for being here. Suzanne, can you tell us about the last will and testament of the famous singer,
Starting point is 00:02:11 Aretha Franklin? I love that you're bringing that up, and this is so important, because one of the things that families really feel resistant to in doing wills and all of the trust and all that space is that it's too big of a lift. It's going to cost too much money. And Aretha Franklin wrote it out. She signed it by hand. It was found in her couch and it was deemed valid.
Starting point is 00:02:33 So it was upheld. That's a prime example of somebody who has a lot of assets and you would think that they would have everything in order. But she didn't. And she did it the last minute. What was it written on? A napkin. A napkin. I don't advise doing that if you can do it on paper.
Starting point is 00:02:52 But it is valid. And if your wishes are known and if it's on a napkin, napkin, it can still be valid when signed, and that's so important. Wow. It was found in her couch, like in the couch cushions. What would have happened if someone hadn't found it? Okay. So if somebody hadn't found it, it goes into just a whole array of different things. It's very stressful. It's very expensive. What happens is if we don't have a will, because there are things called trusts. If we don't have a will, it goes into what's called probate. So it gets handed over to the state probate court. What happens with that is a will is a public document as well. So when you
Starting point is 00:03:30 are somebody famous or even not, it is a public record. And so what happens is they have to start to validate who is the recipient of all of the things. And they determine it. So it really takes all of your items, your money, whatever is left, and it puts it in the hands of people you don't know. And it costs money and it also can create a lot of stress and confusion. People are also can read about it, not saying that people will do this, but they can come out and say that they have a claim on some of that and the courts will have to try and figure out if that's valid or not. Right. So everything gets adjudicated in probate court and it's a huge mess. It's a huge mess. It's a huge expense. And it's a huge stress on the family. When they're dealing with enough
Starting point is 00:04:16 saying goodbye to someone they love, this shouldn't be added stress to this dynamic, in my opinion. Let's back up a bit and tell me about the work that you do with the dying. Yeah, if I may. So I am a registered nurse by trade and I've worked most of my career in hospice care, which is end of life care, and oncology care, which is cancer care. And the minute that I was in that space, I knew that was my calling. So I had really found it, but I also recognized immediately we have a huge gap in that space at this present time. And that gap is a denial that death will be a part of our journey. And because we denials, we denials. deny that. We don't prepare properly with understanding what that looks like even caring for our
Starting point is 00:04:57 loved ones, but also the financial piece. Nothing's in order. So then when it does show up, and it's 100% guaranteed, it is such a overwhelming, crazy mess on so many levels for patients and families that shouldn't be part of that. We've made huge medical advances, which is a wonderful thing. But at the same time, we forgot that end of life is a natural part of the journey. hospice, which I'm a former hospice nurse, is a beautiful model of care. Because of the reimbursement structure, things have changed dramatically in our health care system where there's very limited time with patients. There's a lot of documentation. And I don't think families understand that home hospice care, which most hospice care is,
Starting point is 00:05:40 98% of the care is done by them. The hospice nurse is supposed to teach the loved ones how to do that care. If I'm there for one hour once a week, which is I was, it's impossible to teach families how to do this end of life care. They're afraid. People are coming on services very late. So what I did was I created a training that I could teach families this skill in three distinct phases, the interventions, and hopefully give it to them before they ever need it. And all of a sudden, people started coming from all around the world to these live webinars, which I still do today. And we built an institute around it. And we've taught all over the world.
Starting point is 00:06:17 And this training has been used now by 369,000 people around the world and counting. And it's the missing piece. It's the gap. But again, if we want to extend farther, the financial piece, all of the practical things. What about planning for funerals and memorials? All the other things that go along with that are now part of education. And we need to talk about that as well. Wow.
Starting point is 00:06:39 So I'd like to know what the three elements of that training are. But I also want to ask about the financial piece. Is the financial piece part of the three elements of that training? It's not. It's not. So if I may, I'm going to give you the three parts of the training. So the three parts of the training are literally what is needed for end of life. So when someone gets a terminal diagnosis, there's a shock phase.
Starting point is 00:06:59 And you can kind of understand what that must feel like, not just for the patient, but for the family. And then there's a stabilization phase. So when the symptoms are handled, which we all have symptoms when your first terminally diagnosed, usually, pain could be an issue. nausea could be an issue. We want to address those immediately because they impact the highest quality of somebody's daily living and we want to get it really high and we can. Once those are handled, things are somewhat stable. And so that patient might not even be able to get out of bed, but they're able to have conversations. They're able to do some of the things that are really needed, I call it the work. And that's the stabilization phase. It's a great place for conversations
Starting point is 00:07:37 of the heart, for the I love yous. Please forgive me. I'm sorry. Or coming to terms with the things that I didn't do in my life or things that I regret. That's a place of forgiveness. It's very, very special and it's led to the most beautiful end of lives I've ever seen when utilized. The last phase is the transition phase. And if you think about the analogy of the birthing of a baby coming into this world, because there are many similarities here helping someone leave, the labor, it can go very quick. It can be scary and it can be painful. And that's what that transition phase is. And I think for me, one of the defining teachings that's happened in this training for people is simply letting them understand the steps
Starting point is 00:08:18 and stages that the body goes through no matter who you are, no matter where you are, no matter what religion or culture or anything, how much money you have or don't have. The body goes through many of the same steps in the end, knowing that those are natural steps and what you can do for interventions, has helped people just breathe into this space, usually for the first time. So those are the three phases, shock, stabilization, and transition. You mentioned within that answer some of the most beautiful passings you've ever seen. What makes for a beautiful passing? What is a good death?
Starting point is 00:08:53 A good death. And if we want to go high, and I do want to do a high perspective on this, because this is the question, right? A good death really is a good life. And then what does that mean? And the reason that I say that is because at the end of life, patients will share wisdom of what they want you to know so that you can live the best life. So as they're getting ready to leave, they're imparting with you the important things. And they're things that we might not all focus on or know.
Starting point is 00:09:25 And I've implemented that immediately into my life about time being the most important commodity I have and how I choose to spend it and who I choose to spend it with, the most important questions I ask on a daily basis. And so the people that have had good end of lives that were just organic, I really wanted to study what that was. And it really was this. It was that they lived somewhere, whether it was subconscious or conscious or both, with the knowing that one day this journey would come to an end. So they lived a very different presence each and every day and really enjoyed it. And then they had somewhat of a blueprint. I know when I want to go home. I know when I want to stop trying to outrun. this natural thing that we see so much right now, which again will lead into finances, but other stress. I think we want to really talk about that. So a good death is a good life. And that's really about you and how you choose to spend your time, making sure that you're connected and fulfilled and sharing your gift because I think we all have a gift that we came in with. I think the point of life
Starting point is 00:10:32 is to leave the world a better place because we were in it. So what is your inner calling? What is your heart calling you to do and have you done it yet? Because at the end of life, that's what I hear from people. I didn't live. I knew I was supposed to do that. That's the regret that I hear. And I don't want to get caught in that space and I don't want anyone else to either. Tell me about more regrets that you hear because you've mentioned that there are really four common regrets that you've heard across hundreds, maybe thousands of people that you've seen through the end of life. Yeah. So it's interesting because they say that death is the number one fear in the world. and at this time, and I really understand that. It was interesting because before COVID,
Starting point is 00:11:12 death was number two and public speaking was number one. So I love that we kind of combine them, but now, but since COVID, it bumped up to number one. The joke is at a funeral. You'd rather be in the casket than giving the eulogy. Terrible joke, but it's really, it's a serious thing for a lot of people. So taking that, that death is the number one fear for me, and I've been with over a thousand people the end of life, been honored and privileged to be in that space. It wasn't the fear of the death that came about, it was the fear that I thought I had more time and that I didn't live. And so if I may, I really want to say what people are saying at the end of life and share what my perspective is, were physical, mental, emotional, and spiritual. And at the end of
Starting point is 00:11:56 life, what seems to happen is that as people's physical body is diminishing, their spiritual body seems to be growing. And if we don't understand that there's the two and that the mind is always going to be based on what you've put into it. I call it my internal Google, right? So what I've been exposed to, the learnings of my family, how I grew up. And it's going to give me the direction based on that information. And I think at the end of life, they're able to look at it with a different perspective, but also the regrets of, oh, I didn't live my gift because I was scared or I was worried what others would think. I was doing what I was told was going to make me happy or what I thought would make other people love me or accept me. And they really regret that because it's only
Starting point is 00:12:42 them that need to accept what they are choosing to do. And so this is a very important lesson. I think we all know it. Many times you say, where did that come from? I'm not even sure why, but that felt so right. I'm supposed to move to Charlotte. I'm just giving an example. Right. That doesn't make any sense. I just moved to Florida. Why would I do that? But in every cell of your being, you feel a sense of peace and excitement. You know, it's funny that you use. use the example of moving because when I moved to New York City, a lot of people said, why are you doing that? It's expensive and there are high taxes, right? And they're absolutely correct. I avoided moving to New York City for a decade for exactly those reasons because it has
Starting point is 00:13:23 a high cost of living and high taxes. So why would I do it? But let the heart lead and the mind execute. Don't let the cost of living tail wag the living dog, right? I love that. But I think what you said is so important because that is, to me, life mastery and not mastery in an ego way, but I think we're all, what is the point of, what is life about? What am I here for? I think we all ask that. When the heart is showing you, and it will, it will show you. And then when you take that leap of faith to step into following that, your life opens up in ways you could have never imagined. And I'm sure, you know, you're like, there's no greater city than New York. And it's just that you can take it.
Starting point is 00:14:07 No one else can do it for you. Tell me more about some of the regrets that you saw. You mentioned the regret of getting too caught up in what's right on paper rather than what is actually true to your inner calling. Yeah. That's one of their regrets. Can you tell me about some of the others? Yeah. So I'm going to talk for a minute about forgiveness, if I may.
Starting point is 00:14:28 Because when you said a minute ago about the most beautiful end of lives, In that stabilization phase, there is what is organically known as like a life review. I think we should probably all be doing this periodically, kind of doing an inventory of how our lives are going and if we want to change things. But at the end of life, it happens organically. And so people are looking for a place of finding acceptance of what their life meant. And when we do that, when we go through the journey, there's many times that we come about places in our journey that we've been carrying around pain or,
Starting point is 00:15:02 guilt or shame or anger. You know, it can be outward and inward. This is part of the human experience. And when we hear from people at the end of life, how they say, and this is so interesting right away with every different culture and religion, people as they got closer to the end of life, started to say the same things. They started to say, there is no judgment. Everything happened for a reason. Now I understand why that experience happened when they maybe carried it in anger for 30 years. They see the gift that it was trying to teach them. They see the lesson that it was trying to provide them. And I know these gifts don't come in the wrapping that we're usually aware of of gifts.
Starting point is 00:15:42 Forgiveness may be and is the most transformational tool we have at the end of life and we have in life. So I really want people to take that away today. And it's forgiveness of others, but it's also forgiveness of ourselves. And so at the end of life, so many people, I think everyone's stuff bubbles to the top. And they want to let it go. And they want to finally say, I'm sorry for things that I wish I had done better. And if I, can I give a tool of what I use as technique? Because this is really helpful.
Starting point is 00:16:14 And I think your listeners will really love this. When we hear from end of life patients that say there is no judgment and that we're all responsible for our actions, we all have to work that through. But when the opportunity of something was for growth and we look at it, I always will say to people, go back to that space. So go back to that. Let's just use that teenage girl that maybe was acting out. Let's just use an example. And maybe made some poor choices that hurt other people.
Starting point is 00:16:41 Go back to her at this moment. And when you look at the dynamic of where she was at the time, what she was going through, what her life was like, was she doing the best she could in that moment? And I'll tell you that every single time the answer is going to be yes. Maybe she had parents that were abusive or addicted, and there's no judgment here. Maybe she had been hurt in a few different ways. She was acting out. She was looking for love.
Starting point is 00:17:09 She was just reacting. But was she at that moment doing the best? So can we forgive her? And do we now know better? And this can be applied to not only ourselves, but it can be applied to obviously people in our lives as well. And the misunderstanding about forgiveness is that it's for you. it's not for the other person. And so you can think of it as your energy. If you are carrying around things that have happened that you have not let go or process, it's that like you're carrying around
Starting point is 00:17:37 things that are consistently draining your energy on a daily basis. And don't you want to be free of that? It's the most freeing thing you can do. And it's really important. So at the end of life, organically, people do a life review and we go through that. Wow. So we've talked about leading a life that comes from your intrinsic calling rather than what makes sense on paper. And we've talked about forgiveness. What are some of the other regrets that you often see? And I think these all kind of go along with the unforgiveness. Because if you can think about unforgiveness, sometimes if we are carrying anger or shame or guilt,
Starting point is 00:18:11 we're not going to love ourselves. We're not going to love ourselves fully. And when you don't allow yourself to love yourself fully, nobody else can love you. And there's lots of behavior and lots of unconscious, looping thinking that's going to keep you in a dark place or a heavy place or anxiety or depression. So if I have a loop going on because I'm carrying around anger, that I'm not good enough, that I'm not lovable. And I'm hearing that on a loop.
Starting point is 00:18:38 My actions are going to be like, my signal is going to be signaling out. People at the end of life say that everything was about learning, but learning unconditional love. So not conditional love, but unconditional love. and that we're all connected, that we're all connected to one unconditional loving energy. And there's a thing that happens at the end of life that many people will say, I'm going home. They say this as they get very close to the end of life and they say, I'm going home. And it's not the physical home because their families will sometimes say, mom, you are home.
Starting point is 00:19:11 They're talking about a spiritual home that we're all connected to. And when they speak of this, there is such a peace and serenity to it that if they were fearful before, completely changes things. But for us, gifted to still have this journey, can we take the wisdom that end-of-life patients are sharing in all parts of the world and use that on the best lessons on how to live? This relates back to something we talked about right before we started taping, which is in modern society, at least in the United States, death is tucked away and hidden. It's not something that we are faced with that most of us are faced with on a day-to-day basis. And so it is easy to forget that it exists as we go about our day. And there is something that gets lost in that, in that
Starting point is 00:20:02 when you forget that you are going to die, you sometimes can then forget how to live. Absolutely. A hundred percent. And I think that's exactly what's happening today. And so when I first started in this, so I grew up in a medical family. And so I, you know, children hear things and they absorb things. So my father was a doctor and my mother was an administration. And so I always heard about people being critically ill and the plight of people and challenges with the finances and all that. You absorb that. So I knew that end of life was a part of our journey. And I think, again, that's something that's missing, a natural way that we bring children into the awareness that it is a natural cycle of life because we're trying to shield it from them and they develop this fear,
Starting point is 00:20:43 this very dysfunctional fear, which shouldn't be there. So we really have to be mindful of our children. But I knew that this would happen. And when I got into the medical profession and was seeing people at the end of life, it was so dysfunctional and backwards. It was so heartbreaking. And I'm talking about people 98 years old where the family says, what do you mean they have a terminal diagnosis? Fix it. Doctor, do something. And I wondered what happened. So doing my study, it's only in the last 100, 120 years that we've made medical advances, which is great. That's a great thing. But at the same time, we're We've removed the awareness that end of life is a natural part of that. And with that, we remove the teachings how to care for somebody, even how to teach doctors how to have that conversation and do that symptom management. That's one piece of it. We also maybe subconsciously be using language in our medical profession that is saying, be fearful of it.
Starting point is 00:21:40 He lost his battle with cancer. Mom, you need to fight this. Have we set up a dynamic where death is the ultimate? where death is the ultimate failure. And I will tell you this, that no matter how much you try and how much you do, sometimes to a default that can cause pain and be financially heavy burdens to try and outrun something that is 100% guaranteed, there's going to be one ultimate winner if it's a winning, losing situation.
Starting point is 00:22:07 So do we have to instead is the answer then to change our relationship and perspective to this? can I say for myself, where's quality of life for me? And when would be a day where quality of life is no longer attainable that I wouldn't want extensive measures or things done? I would want to be kept really comfortable with symptom management for as many days as I have. And if quality of life is what we think about at the end of life, then it also stands to reason that the quality of our lives is something that we should be thinking about throughout our lives. Yeah. One of the things I implemented right away for my own journey was that I saw people of all different ages on hospice. And we know that things happen. So what I did was say, okay, every day is like one little lifetime because you just don't know how many days you have. So what are the important things for me in this one day so I don't miss it? So that my goal hopefully is when the day comes, I can say, okay, lived well, didn't take it for granted, didn't miss a day. And what I did. And what I do. is find the moments of joy. I find the moments of connecting with presence. I find the moments of hopefully service. And I don't mean being big service. I mean holding a door open for someone, giving somebody a smile, saying hello. I feel like we're all so separate. And those things really, really resonate. And if I can meet the day with that kind of energy and focus, I know that when
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Starting point is 00:25:32 You mentioned earlier that one of the major things you've learned is that time is the most important asset that we have. But how do we incorporate that teaching into our daily lives when the day-to-day requires so much, time doing such minutia. The day-to-day requires folding laundry and commuting and unloading the dishwasher and answering 72 emails, you know? Okay, I'm going to give you a technique that I use, but I want people to hear this. If you don't love what you're doing as your career, run as fast as you can in the opposite direction. And I mean that because if you're waiting for Friday at 5 o'clock, you're missing this entire thing. And there's no amount of money that can bring you fulfillment and connection to something that is spiritually draining you. Okay. So just I really want you to think about that.
Starting point is 00:26:37 And if you've got the big house and the big car, because that's the path that you were on and I understand it, think about this. You might want to change things because your happiness and your joy every day is so much more important because you can never get that back. And I've heard this from people who've been billionaires. I've had people with so much money and said, I wasn't happy. I didn't have connection. And so that's very important. So let's talk about the minutiae because, okay, because the human experience,
Starting point is 00:27:08 we do have to do things. All the emails, I understand exactly what you talk about. One of the techniques that I've taught in my trainings is to make sure that you do the important thing first. If that means that you need to wake up a little bit earlier, do it. Because if you want to write that book, or if you want to work on a project that you want to work on, and you know that when the kitties are up and their feet hit the floor that you're on and you're running, what I have done and taught is that if there's something important, give yourself even that hour first. And when you do that, there's such a resonance of feeling like, wow, I did that
Starting point is 00:27:47 creative part. And then folding the laundry, doing the emails, it doesn't take away because what I used to do is the opposite. I used to say I'll get to the special project after everything's done and guess what happens. It never gets done. And then you start getting resentful. And then you start saying, I'm stressed out, just doing all these things and I'm not happy because you're in control of your time. So scheduling it is super important. And I would also invite people to really look at your calendar. What are things you could possibly cut out? And this is a working skill for me, and I think a lot of people, the word no is such an important word to learn to say. And if something doesn't light you up and you don't want to do it, I'm not talking about if you
Starting point is 00:28:29 have a real obligation, but if you just feel, oh, well, you know, I really, if it really isn't and it's going to detract, it's okay to say no. Your time and your energy is so important. And there's only two things always happening. Your energy is either getting drained or your energy is being added to. And those are about choices you make, what you choose to do, and who you are around. Getting up that one hour earlier in the morning requires going to bed one hour earlier at night. I think that's where a lot of people really get stuck. Two things really happen. One is you've got a whole bunch of things that you need to do when you get home from work. You got to make dinner. You got to answer a few more emails. You kind of have your list of evening chores. And then, in addition to
Starting point is 00:29:16 that. There's also a little bit of rebellion where you're like, I want those 20 minutes to watch comedy because that's my autonomy. These are my 20 minutes. And I think that's okay. And I think that that's okay to do. But I also know, like, watch, I love comedy. I mean, it's just wonderful. Yeah. And I know that feels really good. And it kind of just puts us in a space. As we come out of the sleep state, so when you're in the sleep state in a 24-hour period, you go through different brain waves. You'd go through four different types of brainwaves. When you're coming out of sleep in that beautiful time in the morning, you're coming from that space of connectedness, that you're not in your head. That's a very important time to even take five to ten minutes. Don't touch your phone.
Starting point is 00:29:58 Go take some deep breaths and just be grateful. At the end of the day, we've carried all this stuff of the day. And I think it's very important, like you said, to unwind. And yes, that's put on comedy, to kind of shake some of that off. But in the morning is almost where you set your energetic thermostat? I would like to share some of the beautiful end of lives, if I may, of what happened because you did ask me this. And I know that there was one time in the oncology unit that completely changed everything for me. This woman came into the oncology unit. I was working the Friday, Saturday, Sunday shifts, those long, long shifts. And she came in, she was 44 years old. She came in, she had a fractured hip because she had
Starting point is 00:30:38 gallbladder cancer. She was on chemotherapy. It brittled her bones and she broke her hip. So she came in with her sister. They were very shock phase, very frightened. I wanted to build trust with them right away. And I remember at the end of the day on Saturday, moving her from the bedside commode, which is just a turn and pivot right back to the bed. She was 44 years old, no lung issues, and she was shortest of breath. She was breathing heavy. And at that moment, I knew we both, I just had her sit, asked her if she wanted oxygen cannula. She said no. But at that moment, we both knew something really significant was happening here. It was just, I remember us just pausing and taking it in.
Starting point is 00:31:18 Sunday morning when I came into that shift, they told me they did testing that night. She was short of breath. They found that she had blown a blood clot, went to her lung. That's a pulmonary ambuli. It's a very, very bad thing. Sundays in at the hospital, the doctor's come in on fragmented schedule. So I remember the doctor came in at about three o'clock and she said, what is happening? And we told her, you know, pulmonary ampli, all of this.
Starting point is 00:31:38 And I remember walking, I had a habit of going on. rounds with doctors so I could hear what they were saying and what families got. We walked through the door, her door, and the Madeline said to the doctor, looked at her and said, I just want to thank you for everything you've done for me. And I remember turning to look at the doctor and tears were going down the doctor's face. Madeline was telling us in that moment that she was going to die before any of us knew this. So there is an awareness that starts to happen. But this is what they said happened. At about 10.30 that night, that Sunday night, Madeline woke up from a nap and said, get my sister. I'm transitioning with all of the excitement that you would tell an eight-year-old
Starting point is 00:32:16 child you're going to Disney World. They went and got her sister from the lounge. She came and she goes, I'm transitioning. I don't even know if I knew the word transitioning at that time. So I have to ask you this. What did Madeline see? What did she know now that not only removed her fear, but had her excited about the next chapter. That is just one of the examples. There are things that happen that are common experiences with end-of-life patients that will completely leave you open to say, wait a minute, maybe we don't have to be afraid of end-of-life at all.
Starting point is 00:32:50 Maybe we have to be afraid of not living, which you've said. And also, if they're saying these things from all different countries and different places, is there a much bigger picture going on here in this? this human experience that we should be aware of. When you talk about the wisdom shared by many of your end-of-life patients, it sounds to me as though, in the examples I've heard, that these patients have full cognitive capabilities, how does it change when a patient at the end of life has dementia? Dementia is interesting, and it's such a big challenge for people right now.
Starting point is 00:33:31 So for dementia, they actually present for years very much like people before they head into a transition phase. They talk to people that we can't see. They're not responsive. They are quiet. They are sleeping a lot of the time. And there are moments that my families have said that they've had a person that has had dementia that now is on hospice care, which by the way is they're eligible when they lose weight because they're not eating enough. that's how they actually get on hospice. That's a big question for people to know. They have said, it doesn't happen always, but they've said that there are moments that that person
Starting point is 00:34:09 has woken up at the end and has been able to share a few words. One woman had it for a week. That I've never heard before, have woken up clearly and have been able to say, I love you, Linda, been able to come back in this awareness for a few minutes and have a final conversation. There's something called the rally or a surge of energy, which does happen with end-of-life patients at the end sometimes that do wake up like they are much better and they have this. It's like a gift. It's a window. Dementia patients, I've been told some of them have had this as well. It's much more challenging. And I think our focus for the dementia patient has to really be focused on the family caregiver. What they go through, it's the most intense care financially, emotionally, physically that I've
Starting point is 00:34:56 ever seen. And it goes on for years before they're at end of life because we have such a high prevalence of this. And again, when life expansion, so in the last hundred years, we've literally almost doubled life expectancy. A hundred years ago, it was 47. Today it's 80, 81. With that extension comes cognitive, physical, financial challenges that we've never dealt with before. So families are unprepared for this. If I may, I will say that caregivers, like that cannot and should never be done by just one person, but we're seeing it done like that all the time. And it is absolutely heartbreaking. There's caregiver syndrome. People get sick. We saw what just happened with Gene Hackman and his situation. And I think that is a cautionary tale.
Starting point is 00:35:43 There's 48 to 52 million family caregivers that AARP determined and 70% of them said they are overwhelmed and don't know what to do. We have to fix this. Right. Now one thing, you mentioned the stats on life expectancy, but the reduction of life expectancy in, you know, many years ago was largely attributable to high infant mortality. It was the case that once a person survived past early childhood, then life expectancy was comparable to today. Yeah, and that is true. And then I know we know statistics now that the aging population is going to outnumber. Right. And this is global. So there's concern, and rightly so. So there's concern with when you have a, population, I think just like COVID, when you have a huge need at once and you don't have
Starting point is 00:36:31 the setup for it, and I've been calling an elder care crisis for 15 years because I would see it in the hospital, families are unprepared to know what that looks like. And now you've got a workforce that is starting to say, hey, people are not having children. The workforce is starting to diminish. We're going to have this huge elder population and we don't have people coming in. So on many fronts, I think we have to be aware of the challenges before us. But I just want to say that the minute we put a time limit and a dollar amount on end-of-life care and support, we're doing something wrong. And we can't go back and do that again. So if we're going to choose one thing that at this minute, let's address and try and get answers to, it's the gaps that family caregivers have and the
Starting point is 00:37:15 system has and caring for this elder population that we need to address immediately. And just talking about it helps. So to anybody who's listening to this right now, who either is a caregiver or is anticipating that they may need to become an elder caregiver at some point in the next five to 10 years, what should they know? How should they prepare? Know that you're not alone. So the first thing is know that you're not alone. And then the second thing is know that there's so many great free resources out there for you. There's so much information for you. Our Institute has a whole free resource section. And the time to learn this is not when you're in it. When we're in it, it gets a lot more complicated and we're usually
Starting point is 00:37:56 putting band-aids on, you know, what's happening in front of us. Have a plan. So for all of us, including myself, I have two parents, one turned 86 yesterday. Happy birthday. Thank you. And the other is 85. I'm going to be responsible for caring for them and I want to be. We want to love our loved ones. But it's not just a black and white situation. I don't know physically where they're going to be. I don't know cognitively. I don't know how that decline or finances. I know where that is now, but sometimes that changes. So what I recommend is have a living well aging plan. So what that means is plan A, B and C. So if A, and I'll use myself as an example, if A, where would I want to be? Well, I'd want to be in New York. I'd want to be able to go to dinner and the theater and all of those
Starting point is 00:38:40 wonderful things. So A is best case scenario? Best case scenario. Best case scenario, yes. New York best case scenario. Trip to Florida if I want, whatever. B would be if I have some limitations, whether it be physically and I need some sort of help or financially. And then there's something called a granny pod, which a lot of caregivers don't know yet that is a little accessory dwelling and they're really equipped well, that you can hook onto a main house and you can have your mom there. And so she has her independence as well, but you can be checking in on her. And then C would be if I didn't have finance. finances and I needed total care. Where would be a place that I'd be comfortable in? And so thinking at these terms ahead of time, and here's another big part, is having a family conversation. Because I have two brothers, I have a sister, we're all in different places, but saying, hey, if it were a point in our lives that mom and dad had to live with a, who has the big house and would be open to that? Let's talk about it now. What if we did a year, a year, a year? What can we creatively come up with so that we have a blueprint and a roadmap for when that time comes.
Starting point is 00:39:47 What are some of the best practices with regard to balancing caregiving responsibilities with work-related responsibilities and also at the risk of putting two questions into one? How should a person handle the financial responsibility that comes with caregiving in addition to the financial responsibility that comes with just being an adult, you know, having to budget for themselves and their own children in their own retirement. Exactly. They're both so great. And they do intertwine.
Starting point is 00:40:18 But let's really talk about the financial piece for a minute if we can. Because I don't think that people are aware of how much it costs to age, just in general. I sat down with a family. They had a little over $5 million. And they had a history of dementia in the gentleman's lineage. So they were in their 60s. and they had a very lovely house and they said, well, if it comes to that, we're just going to hire help and stay here. And what I did with them is I sat down and showed them what care costs
Starting point is 00:40:53 to bring in. So if you had to have 24-7 care seven days a week for a few years, which is very common in that type of situation, and they saw all that money just go away. And it just made them physically sick. And so what we want to do, I think, and I want to really invite this conversation to be open, as we have an aging population like we've never seen before, we have to think of different ways that we can now support caregivers and patients as they age, not going bankrupt, not being scrambling for things. So I invite a few things. One is to really think about the multi-generational family unit again. And there's a few reasons why. People, when they're aging, these are the two things that I'm finding are huge, is that isolation and loneliness is one.
Starting point is 00:41:43 Nutrition is another. And why that's happening is because they don't have the ability always to be cooking for themselves. And then the third part of that is safety. Because you find out there's an issue because you haven't heard from your mom and she has been on the floor. So the multi-generational family, just from a functional standpoint, we need to bring it into modern times. If we just think about that. Who has an ability for possibly an accessory dwelling? So there's a little extra room. What about the fact of that who has a first floor accommodation? And this is something that's really interesting and important, even for your parents that have their own home. There's going to usually come a day in this journey that people will have trouble with stairs. And where do you think,
Starting point is 00:42:28 unless you're in Florida and places that have one floor only, where do you think most of the the time, the bedroom and the bathroom are. They're usually upstairs. To be ahead of this and to start thinking in terms is so important because it reduces the stress. I had a family that I was caring for that had a woman with dementia and she had it for years. Each family member, they would take six months at a time. So she would go up to Maine in the summertime and live with her adult niece. and they would enjoy that time. Then if she goes six months with the daughter. And so having these conversations with family and with your parents about what would be,
Starting point is 00:43:09 what would be something that you would enjoy and also what's doable ahead of time can alleviate the burden of having to come up with finances. When people talk about assisted living, if you have seen prices of assisted living, if you have seen prices of what nursing homes cost, And if you don't, if you have assets, you will be paying the nursing home with your assets until they are drained and then you can have a benefit kicked in. But it will go through everything in your assets very, very quickly. And my problem is, is that a lot of nursing homes are very challenged with being understaffed and the care is just not what it should be. And there's no judgment here.
Starting point is 00:43:54 We're just in a struggling system. Most people, the number one thing they're afraid their families will go back on the promise is that they will put them in a nursing home. Sometimes that's unavoidable for the comorbidities and the care that it is or whatever circumstances, no judgment. But if we think about these things ahead of time and can come up with plans, again, if you have the ability to share, let's just use the example of sharing with your brothers and your loved ones, you may just have some of the most beautiful quality time with your parents, but you also don't have the expense. that these other things cost, which are great expenses. By the way, 120 years ago, the older you were, the cooler you were. So people used to lie their age up and why? Because they were the wisdom keepers. They were the Google. And now we have Google. Now when it comes to nursing homes and assisted care, I know I'm thinking about a handful of friends right now who actually, I'm
Starting point is 00:45:01 thinking about one friend in particular, he would be open to living with his father. His father's in his 90s, he'd be happy to live with his father, but his father needs so much round-the-clock care when it comes to the activities of daily living, buttoning his shirt, getting a fork, I mean, just the basic activity, using the restroom. And so for this friend in particular that I'm thinking about, it isn't that he doesn't want to live with his father, it's that he needs round-the-clock care. What can a person financially and logistically do in a situation like that? Yeah. So what I would say, and that's a very common situation, is that I think that we have to think in terms if we don't have multiple people, again, people live in all different areas. So that's very challenging. What are blocks of respite or supportive care within that dynamic? So for him, just top of mind is if he wanted to live with his father, which I think is a beautiful thing, can I find an elder care doula or someone who can come in for a reasonable amount, maybe the daily hours, because I assume he's working. right, or the person's working.
Starting point is 00:46:08 So they can come in, be companion, get meals, help him get dressed for, you know, the daily hours. Then is there some friends or is there an agency or some or even extended family that lives in a different place that can come in once a month and give me the break on the weekends? And so even if you have a block of a few hours of respite care, it's incredibly important to be able to recharge your batteries because some people are thrown right into this. He's planning ahead, which I think is beautiful. And what I would say is be creative about it. Allow other people to be part of that in the schedule so that you have those breaks that you can go to the movies or do something that you like. You're able to work without it being interrupted. And you're there for your dad too.
Starting point is 00:46:52 So you're overseeing it as like the manager and doing some care, but it's not detracting from your life what you need to get done and it's not all on top of you. It takes creativity and it takes a little bit of skill. Sometimes it's as easy as some people bringing in meals. Some people who live in family that live in different states. Well, I wish I was there. I would help you if I was there. Well, maybe they can hire somebody to do some of that care. And people want to help.
Starting point is 00:47:17 So we need to get back to the reality of what the intensity of caregiving is, the needs of our elders, which is usually 24-7, and how can we stagger that care so that it's healthy and balanced for all of us? Right. I know that we talk finances here, and I love that. I do want to talk about how expensive it is to die. Yes. Can we all afford to die?
Starting point is 00:47:39 No. You're right? We can't. And people have said that. I just want you to know that I have comments on my social. I can't afford to die. Wow. And how heartbreaking is that?
Starting point is 00:47:50 Because dying, having the journey come to an end is difficult enough on, on different levels. Just saying goodbye to somebody physically. I hope your belief system is comforting to you. And I hope that you listen to the story, the true stories of people to end of life because they're very inspiring and they've helped people heal their grief. But let's talk about when we don't plan ahead and when we pretend that death is optional, when it does show up and fear hijacks the situation because it will if we pretend and somebody
Starting point is 00:48:20 says, your mom's going to die unless you put a feeding tube in her. The doctor says, and this has happened with a family. Panic. I mean, of course, that's like getting hit with a ton of bricks. the son and the daughter both remember that situation differently. And there was no advance directive. And the son said, you know, she didn't want anything. And the daughter said, no, I think she wants everything.
Starting point is 00:48:41 And so they ended up putting a feeding tube in. The son and the daughter don't speak anymore. The mother kept pulling away and moaning every time the feed would come because she didn't want it. It was a tragic situation. But I would say that when fear presents itself, we start trying this. We start trying that. we start grasping. That can be costly, not just financially, but emotionally and also painfully. Some of these things can be painful if it's that quality of life should be the benchmark. When we're in
Starting point is 00:49:13 that last phase, knowing what quality of life to you and when you wouldn't want to, again, go trying aggressive measures when quality of life is not reversed. Very important. Medicare did a study and they determined that in the last six months of life, a third of Medicare money is spent on these treatments. For me, the concern is because I was there, is that people recovering from surgeries, people in treatment, sometimes it can be very uncomfortable, make them very sick, and then they have their end of life anyway. So that to me is something I think we want to think about. Most people do want to be at home. What can we do to support patients and families to have that happen? Now let's talk about actually after we have died, what's called disposition and our funerals and our
Starting point is 00:49:56 services. When we don't think about it ahead of time over here, it shows up, we go right into the next kind of scramble to put things together. I think it was in 2022 or 2023 that the National Funeral Home, and I hope that's the right organization, I'm pretty sure, said that the average standard funeral was between $7,000 and $11,000. That's a lot of money for people. That's a lot of money a lot of people don't have. And so one of the things when we think ahead is that we can bring back ritual into this time, meaning that home wakes, home funerals used to be the norm. And there's a lot of studies that show how beneficial it is to the remaining people. They have time with their loved one. They're in their home environment. There's something that's healing about just seeing that person,
Starting point is 00:50:50 and knowing that they are not physically there anymore, but understanding there's still a presence. Sometimes people describe it of feeling the love of their mother stronger after that time period. And I think that does something really, really healthy for their grief and bereavement. People can come to the house. They can have food. They can talk about things.
Starting point is 00:51:10 So that's one thing slowing it down. Having a natural burial, having a home wake and a natural burial, you can do for a few hundred dollars. I want to repeat that. You can do that for a few hundred dollars. So when you think about thousands, when we don't think about it and go into default, and you have choices, they're empowering. And they, many times will change a situation where we feel we don't have any control.
Starting point is 00:51:35 You know, somebody is dying we love, or I'm at my end of life and I feel a loss of control. And then somebody shares with me, wait a minute, where do you want to be? How comfortable do you want to be? Who do you want to be here? How do you want to be celebrated? What music do you want playing if you want it? What do you want to be dressed in? It starts to turn into a very different experience.
Starting point is 00:51:54 For me, knowing that the empowerment of that, slowing the process down with grief and bereavement healing, but also financially, that for a few thousand dollars, you can choose to have a water cremation, which is now a new option. Desmond Tutu chose that. What is a water cremation? Water cremation is where you're put in a chamber with alkaline hydrolysis, and your body is reduced to its natural mineral component. so much so that it's so organic and pure that you can use it for fertilizer.
Starting point is 00:52:25 Hmm. Yeah. It's one of the, I think that and human compost, which we'll talk about in a minute because I did just say that. The most environmentally friendly with no emissions and no CO2 that's going out to the world. So that's water cremation. Then there's human composting that's coming about where you are mixed with bark and different things and made into a really good amount of compost. and then they donate it to forest green spaces.
Starting point is 00:52:49 You can take some home. But I think, again, from the financial standpoint alone, families don't have thousands of dollars. People are really hurting today. To know there's other options that can benefit you on so many different levels. And if I may, I just want to touch on whole body donation because this is an option that cost zero money. What you can do is if you choose that you can gift your body to a medical, institution where students can learn. Doctors can learn on an actual body, which makes them so much
Starting point is 00:53:22 more skilled, it has a ripple effect of good. They will literally come and pick up the body, and they will then use the body when they are done to teach multiple hundreds and hundreds of people. When they are done, they'll have a service. They will do the cremation and return the remains to you for zero money, knowing that you have been not only contributing to hopefully a future of good that's going to go out, but it costs literally zero money. And that list in the United States can be found at the anatomical Florida anatomical board. They have a list of all the U.S. program. So if you go there by state, you can literally see the state that you're in and a reputable medical school that you may want to donate to. Well, we will find the link to that before we publish
Starting point is 00:54:08 this. And then we will put that in the show notes for this episode. Fantastic. Because I think that's just refreshing for a lot of people to know. So anyone who's listening to this episode, look to the notes, we'll put the links in there. I think that's a great option because not only are you making a donation for the sake of the advancement of human knowledge, right? Not only are you donating to a worthy cause, but it's also zero dollars. Exactly. And so when I was redoing my research with all this, you know, I change sometimes all the time. It's like, okay, water cremation, home wake water cream. But then the donation was so important, especially for me as a nurse, knowing how much I learned or the lack thereof, not having.
Starting point is 00:54:46 tactile ability that you're going out and trying honing your skills, doctors need this. And what a gift that is, because then they pay it forward and can help hundreds and thousands of people by the gift that you've provided them for zero money, just like what you said. Pretty amazing. Right. In the Nepali tradition, we have open air cremations, open higher cremations. Unfortunately, that's illegal in the United States everywhere other than a couple of spots in Colorado. So in Crestone, Colorado, it's legal, but you have to be a resident of Crestone in order to do it. There's also a Buddhist monastery in Fort Collins, Colorado that has an exemption to it. I've looked this up because this is how I would like to go.
Starting point is 00:55:29 Yes. But it's illegal in the United States, so. And I think that's important. And isn't it great to know our choices now and know our options now? At least you have a blueprint. At least you have a roadmap. up knowing that it can change, but knowing that, wow, that's important to me. Where is the local place that I can have an open fire cremation?
Starting point is 00:55:51 Where is the situation that I can have a natural burial so that you have it all designed so that when the time comes, you're just focused in the present moment of being with your loved ones, that things aren't coming in. And again, like that lesson about how we live each day, trying to be focused on the present day and the joy so that we don't miss it. Same can be said for that aging and end of life when we plan ahead. Right. You know, as you were talking about a home wake, and I actually didn't even know that that was an option, it reminds me of is, you know, when I think about some of the most expensive milestones in a person's life, often a major component of that expense is event venue, right?
Starting point is 00:56:35 So if you think about a wedding, what is one of the most expensive elements of a wedding other than the food and the catering? it's the event venue. And so if you can remove the cost of the event venue, it drastically brings the price down. And so if that's true for a wedding that can be held at home, it's also true for a funeral or a wake that could be held at home. I love that. And there's many more wins on that because people are comfortable in the home environment, right? So it's natural. They feel good there. There's not a rush that the service has to be over at four, that you're in and out, which by the way, complicates grief on so many levels. When I was home hospice nurse and somebody would die, I would say to people, don't rush,
Starting point is 00:57:21 take as much time as you need. And they say, well, what do we do now? What do we need time for? And I know how critical that space is. There have been times that when the funeral home, and I know they're doing their job and it's what they do, sometimes they can come very quickly. And all of a sudden, that body is whisked away. it's never going to be in the same dynamic.
Starting point is 00:57:40 Sometimes that family doesn't even know what is happening. They're so lost in this process. So by removing the venue and caring for your loved one at home, with love and compassion, brushing your mom's hair, if that's what you choose, there's something again that's very cathartic about this and very healing. And then having people come and having them have a meal there and not rushing it.
Starting point is 00:58:03 So let's go back to Home Wakes for a minute in the legality in the United States. you are able to keep your loved one at home legally. They are yours. Legally, this is your property in every state. Now, there are different things that you want to be mindful of. If I want to do a three-day home wake in the state that I'm in, do I need any special preparations? Like, is it the hot summertime where we need to cool the body?
Starting point is 00:58:27 So there's a great resource as well, the National Home Funeral Alliance, which will give you every state. We can give you that information as well. We'll put that in the show notes. Yeah, what I really want to have people here is that this is your loved one. Do not rush this time period. Think about it ahead of time. Who needs to be there? What that looks like.
Starting point is 00:58:47 Are you going to tell stories your favorite stories about mom? Sit around and tell your favorite stories. This space right after someone dies, what happens next has been proven to directly impact the entire grief and bereavement period for you. So making sure we slow it down and bring back ritual, but also, how friendly this scenario can be and how much more financially friendly it can be. Have everyone bring addition. Maybe somebody plays the guitar. You can even have the favorite playlist. If it's summertime and it's outdoor, have an outdoor barbecue. It can really be made. And if I may, I want to share the
Starting point is 00:59:24 story that really cemented for me, the power of the three-day wake, which is also known as a home funeral. There was a young boy, 17 years old, who had a traumatic motorcycle accident. Beautiful young man, heart of gold. Everyone loved him. He was friendly with everyone. And so all of a sudden, his life was gone, like to an end. And it was a shock just for everyone. And this family, they were in California, this family had the wherewithal to bring him home and decide to have a home week. In the very beginning, it was a three-day event. In the very beginning, you see people inconsolable, as you can understand, beside themselves, students, faculty, friends, family. By the third day, the transformation that took place of rejoicing and celebrating his life in that short
Starting point is 01:00:12 time period, through a traumatic sudden end of life, says that if that's possible there through what was happening in that environment, it's possible for all of us. And that makes sense to me about that is that within the span of three days, there's a chance for the community to share their grief together because so often being alone or feeling as though you're alone is what prolongs that. Or has it stuck and frozen? Yeah. So for me, if I could, everyone, please consider for your own sake and for your loved one's sake, for the healing that it provides, give this a chance. Financially, yes, it's a whole win, but for our emotional pain that we're really suffering from because now end of life is not going well for most people.
Starting point is 01:01:00 People have traumatic grief that they're carrying around 40 years, 50 years. And here's the other interesting thing that was a surprise and a very welcome one at that. When I teach people the three phases of end of life, it is healed people's grief. That was such a surprise to me. I think for them being invited into really the holistic natural way that end of life is and also hearing bedside stories help them find closure and peace there. And so we're suffering from a lot of traumatic grief out there, and it shouldn't be. Life is hard enough and then saying goodbye to people we love.
Starting point is 01:01:37 Let's use these things that we can share with one another to make it as healthy as possible. So to go back to the question of, I can't afford to die. You mentioned that you've heard people say that. In the context in which people, and I assume that these are people who are nearing the end of their life, In the context in which they're saying that, what are the things they're thinking about? They're thinking about the cost of the funeral. They're really focused on, okay, this person's going to die. The funeral is $7,000, $10,000.
Starting point is 01:02:05 We can't afford that. And I've had people outside the oncology door of a loved one who was dying, thinking about saying, how are we going to pay for all of this? That is not what should be the focus point at this moment. And so it really is about the funeral home. And just the cost of what that is. And again, it goes back to if we don't know there are choices, we don't know there are choices. And so we want to share that because it shouldn't cost a lot and it doesn't have to.
Starting point is 01:02:32 And of course, you can do whatever you choose to do, but knowing you have choices is really important. When I say to families that you don't have to be embalmed if you don't want to, they say, what do you mean? I thought it was required by law. So there's a lot of misinformation, again, when we don't have this conversation, that changes the dynamic. And when you have empowering choices, it can change the trajectory of the whole entire journey. I've had people pool money together. I've had people go into debt because they think that that's what they have to do and they haven't planned ahead so they know they have to do it
Starting point is 01:03:07 quickly. And that's the default that happens when we don't plan ahead. We fail to plan, right? The famous statement, but really, really important. All the wonderful choices that we have for an array of positive reasons. As we're coming to a close here, I was wondering if you could share with us, what are some of the things that you often see at the close of life? I love this, because right away, I started noticing that not only were people saying the same things at the end of life, but there were these, what I call three end of life phenomena that would happen, all different places, all different types of people in the world. So the first one was that people would wait. They would wait for someone to come. They would wait. They would wait.
Starting point is 01:03:49 for a date or a birthday or something to be resolved. And now, mind you, they're in there very close to the end of life. So they're in a sleeping coma at this state. And they would literally wait for a date or a birthday or someone to come to the bedside for them to have their end of life. So seemingly, they could control the time that they had their end of life. And I said, how is this possible? The second phenomenon is what's called the rally. And people get very close where you would think that we'd literally have their end of life any moment, and all of a sudden they wake up. And they wake up and they are as clear as they've been in 30 years. And usually they ask for something to eat and drink. People are like, it's a miracle. It's not a reversal. It's not a miracle of that
Starting point is 01:04:32 sort. It's a gift. And if there's anyone left to be there, anything left to say, and it's so beautiful. And we talked about people with dementia, sometimes having moments of clarity at the very end to tell their love on what they want to say before they leave. That's the second one. The third one is that they will wait, and I know this is going to sound counterintuitive. They will wait for people to leave the room for them to have their end of life. This happens all of the time. And what I want people to know why this is so important to share is because so many people have said, I just went for five minutes to get a cup of coffee and I came back and she was gone.
Starting point is 01:05:11 And I can't believe I wasn't there. They have so much guilt. So what I'm told is that they know how hard this is on you. And they don't want this to be the last thing that you remember. So they wait strategically for you to step out the five minutes to get a cup of coffee or take a shower for them to have your end of life to the extent that we actually as hospice nurses share with families. If your loved one is hanging on more than three days, which is usually the time in a deep
Starting point is 01:05:38 sleep coma, give them some privacy, leave the room. And this happens all the time. But what is the bigger picture there? What is the bigger meaning that people can seemingly have some form of control over the time that they leave? And I just want to share with, and if we can, and on this, it's beautiful. There was a woman that I took care of on hospice. She was 99 years old when she got on hospice. And she was just a lovely, lovely woman. That night, she went into her deep sleep coma. And she had one daughter that was caring for her that was 73 years old. And every day, she didn't have her end of life. And so I said, is she waiting for anyone to come? They said,
Starting point is 01:06:13 no, we had a big family reunion last summer. We thought she was going to die. Everyone was here. Is she uncomfortable? Is there something? No, they couldn't figure anything out. And I said, are you giving her privacy? And the daughter said, yes, I'm sleeping in another room. I have the baby monitor. I was like, okay, what is going on here? And I remember going back to the hospice office, looking at her face sheet, and on the top right was her birthday. And in four days, she was going to turn 100. I said, she's waiting to turn 100. Then she's going to have her end of life. And it was so intuitive. We talk about that intuition that it was in every cell of my body. And I thought, wow, okay. So the protocols that you're supposed to tell the on-call nurse, if you think someone's
Starting point is 01:06:51 going to die that night. And I remember going over to the nurse giving report. And I said, I have a patient. She's waiting to turn 100 tonight. She's going to have her end of life. They turned around and they said, did she tell you that? And for a minute, I was caught off guard because she didn't tell me that. But I felt it so strongly. Now, this was 10 days in a sleep. And sleeping coma with no water, no food. Science says it's not possible. That night she died at 4 a.m. And good for her. Yeah. She waited until she turned 100. Absolutely. And good for her. So it is amazing that there seems to be, and if I may, the being part of us that becomes more omnipresent as we're getting ready to say goodbye to this gift that we've been given in this
Starting point is 01:07:37 experience seems to have awareness, seems to have unconditional love, and seems to have some sort of control over some of the situation and the times. And I think that just opens us up to thinking, is there something much more going on here? It is beautiful to know that there's a measure of control even at the end. Yeah, yeah, that they still exist. Absolutely. Well, thank you for sharing this time with us. Where can people find you if they'd like to know more? Thank you. We have so many free trainings and we give a free training monthly live for people. So you can go to doula givers.com. That's d-o-u-u-l-a-givers, g-I-V-E-R-S dot com. And again, you can take part in our free training. We have a resource center. And I encourage everyone to do that. We also
Starting point is 01:08:22 have community. So if you are a caregiver that finds yourself isolated, we have Zoom meetings. We are on there together. You are not alone. We are here. We are in this thing together, we can support you and really help you to navigate through something that is very difficult but is a natural part of the journey. It can go really, really well with the right education, kindness and support. Thank you. Thank you so much for having me. Thank you, Suzanne. What are three key takeaways from this conversation? Key takeaway number one. Even a handwritten will can be legally valid. A proper will does not have to be an expensive formal document created by attorneys. If you have the budget for that, I would recommend doing it. But if you are paycheck to paycheck,
Starting point is 01:09:09 if you're in debt, if you're at the stage of life where you're like, you know what, something is better than nothing, then at least create something. Suzanne shares the example of Aretha Franklin, who had a handwritten will written on a napkin that somebody found in her couch cushions, and it was upheld as legally valid. And Aretha Franklin had substantial assets. So to be clear, if you've got Aretha Franklin money, you should hire an attorney. We share this example to highlight that expressing how you want your assets to be handled after your departure, even if you have to do it in a simple manner, having any documentation is better than having no documentation at all. Aretha Franklin wrote it out, she signed it by hand, it was found in her couch, and it was deemed
Starting point is 01:10:02 valid. So it was upheld. That's a prime example of somebody who has a lot of assets and you would think that they would have everything in order. Key takeaway number two. There are high costs associated with aging and dying, but these can be mitigated with some planning. Both end of life care and funeral expenses can be financially overwhelming, but there are a number of lower cost alternatives. And so planning ahead and knowing your options can save families significant money and stress. I sat down with a family. They had a little over $5 million. And they had a history of dementia in the gentleman's lineage. And what I did with them is I sat down and showed them what care costs to bring in. So if you had to have 24-7 care seven days a week for a few years,
Starting point is 01:11:00 very common in that type of situation. And they saw all that money just go away. And it just made them physically sick. And key takeaway number three, alternative funeral arrangements can save thousands of dollars. Traditional funerals average between $7,000 to $11,000. But there are more affordable options that many people don't know about, including having a wake at home or a home-based funeral or instead of getting buried, giving a whole body donation to medical institutions, there are a number of different options. And so as you and your family are planning ahead, have some frank and open and well documented on paper discussions about what you want. Having a natural burial, having a home wake in a natural burial, you can do for a few
Starting point is 01:11:51 hundred dollars. I want to repeat that. You can do that for a few hundred. Those are three key takeaways from this conversation with hospice nurse and oncology nurse, Suzanne O'Brien. Thank you so much for tuning in. If you enjoyed today's episode, if you got value from it, please share it with your friends, your family, your neighbors, your coworkers, your soccer coach, your babysitter, your dog walker, share this with the people in your life. That's the single most important thing you can do to spread the message of F-E-I-R-E.
Starting point is 01:12:22 Second, make sure you're subscribed to our newsletter at absolutely zero cost to you. Affordanything.com slash newsletter. Zero cost is kind of a weird way of saying free, isn't it? All right. Well, it's free. It's free. And it's afford anything.com slash newsletter. So that's number two. And number three, make sure that you are following this podcast in your favorite podcast playing app. Thank you so much for tuning in. My name's Paula Pant. This is the Afford Anything podcast, and I'll meet you in the next episode. Oh, and by the way, you know the reason I always sign off with that line? I'll meet you in the next episode. I used to actually say, if you're a long-time listener, I used to say I'll catch you in the next episode. I changed it
Starting point is 01:13:07 to I'll meet you because nobody wants to be caught. People want to be met. But just between you and me, I've actually long imagined that if I ever had a, this is going to sound morbid. I can't believe I'm admitting this. I've long imagined that if I ever had a gravestone, that that's what the epitaph would say. I'll meet you in the next episode. So on this conversation about end of life, my name is Paula Pan.
Starting point is 01:13:34 This is the Afford Anything podcast, and I'll meet you in the next episode.

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