Careblazers. I have the most special guest joining us today. Many of you will already know her. Her name is Julie McFadden, but you might know her better as a hospice nurse. Julie. hey, guys. I'm hospice nurse Julie. I'm here to change the way we look at death and dying. She has over 1.4 million followers on social media, and she's dedicated her time to educating and demystifying what it's like to die. Today, she joins us on the channel to talk about how it looks at the end of life when people with dementia die. We talk about hospice, the role they play and what you can do if your loved one doesn't qualify for hospice but could still use a lot of support. She's coming out with a new book which will be released in June. You can preorder it now. I know many of you care blazers already have. I've linked it in the description below. Careblazer Let's welcome hospice nurse Julie. Be sure to leave her some love in the comments below. Careblazers. I am so excited to share with you this amazing guest we have today who needs no introduction. Many of you already know her, but just in case you don't. Hospice nurse Julie is here with us. Julie, I'm so honored to have you here. Our care blazers love you. And can you just take a moment to briefly introduce yourself to maybe people out there who aren't aware of you? Yes, of course. And thank you for having me. I am excited to be here and talk to you. This will be great. So my name is Julie McFadden and I'm also known as hospice nurse Julie on YouTube and Instagram and Tik Tok. Basically, wherever you get your social media information, I go as a hospice nurse. Julie and I'm a hospice nurse and death and dying educator. And I am trying generally to change the way we look and feel about death and dying through education. And that's what I've been doing for the past almost three years on the Internet. It's been going really well, surprisingly, in the sense of in my everyday life, if I try to talk about death and dying to people, it's usually like this. But on the Internet, it seems like people are ready and willing to hear. So it's been really great. I love that it's such a needed conversation. There is so much fear and stigma and uncertainty whenever we're talking about death and dying despite the fact that it's going to happen to all of us. So I love that you're able to talk about it and share real life experiences and help family members know what to expect. I was wondering if we could just start out because I know there's a lot of confusion on this. Can you talk about hospice versus palliative care? Yes. So that is probably my most frequently asked question, and I will answer it here in a general way. But just a side note, I do have like two or three long videos on my YouTube page talking about this specifically, because it is I would say it's complicated. Like it's kind of the technical answer, right? So to really technically get into it, it would take like 20 minutes and I could do that to you or anyone else. I'll be sure to link those videos in the description below. But I think the big thing is that a lot of people, when they hear palliative care, they're like, no, my loved one is about to die. Exactly. Can we just clear that up? Yes. And I think a lot of people think, palliative care is a step before hospice. I even hear other nurses and physicians say stuff like that because it kind of is. I get what they're saying. Sometimes people in palliative care do go on hospice, but not always. And it's truly two different programs. To me, palliative care is like always a no brainer, always and forever. Like anyone diagnosed with any kind of like life limiting illness or chronic illness or terminal illness or technically terminal, right. Like you may be dying from this disease even if 15 years from now they should be on palliative care immediately. Because palliative care basically sets a team of people, doctor, nurse, social worker, into your care world right where you are. They're going to help like manage all of the symptoms from that disease or all of the symptoms from the treatment you're getting for that disease. And they will help with the emotional side of the disease, the spiritual side of what's going on, like whatever you kind of want. It's like a more well-rounded program of like they're looking at you as a whole person versus just like one little thing. Yes. So it's more of a symptom management program. Also, it can be funded differently. So depending on like where you're getting it from, how your facility or hospital works, you can do an inpatient and some people can be on what your insurance is. Also, you don't have to be like some people will say you have to have less than a year to live to be on palliative care. So there's no need to have a terminal illness. It's just about having a chronic illness. So that's why it's a gray area, 100% speaking. They're not the same. Hospice is a end of life program where a doctor has said you have less than six months to live. We can go into like all the criteria in order to be on hospice, too. But there are two separate things. They are not hand-in-hand, even though many people try to make them hand-in-hand. Yeah, I think a lot of times when people talk about hospice, it's always clumped. Many times it's clumped with palliative care, palliative care, hospice, palliative care, hospice. And so a lot of people who talk to me when they hear palliative care, they get really scared thinking their loved one's going to die in a couple of weeks. And that's not necessarily the case. So thank you for clearing that up. I've watched many of your videos on social media. You talk about end of life a lot. I am wondering about the role hospice plays specifically for people who have dementia. Can you speak to that? Yes, dementia is just so tough. Anything under the dementia umbrella right. Which is like all different types of dementia and Alzheimer's and Parkinson's can be under there too. So like we don't see those patients, but those diagnosis, those are those diseases until the very, very, very end stage. Some hospices, I will say, are a little more lenient than others. Like I worked for a hospice before that would let people on service that didn't technically meet criteria for dementia or Alzheimer's, whether that's good or bad, like that's neither here nor there. It's just like we technically all should follow Medicare guidelines, right? Medicare will give us specific guidelines for the diagnosis of dementia or Alzheimer's or Parkinson's. It's kind of all lumped into one. And there's very specific criteria that allows us to allow them on to service. It can be difficult, and that is the population as well that can come off hospice a lot. So usually what happens is they are someone with this disease will be like, go on going along, going on. Definitely different than what they used to be. Right. But they are kind of plateauing. And then suddenly something happens. They have an aspiration pneumonia episode or they fall or they get a really bad UTI and it takes them to the hospital. And then the hospital, they're kind of down here. They're looking really bad. They're not really eating. They're sleeping 22 hours a day. They have this infection while they're in the hospital. They'll get referred to hospice. They'll meet criteria when they're down here on hospice. So they go on to hospice. And then as the months goes on, months go on while on hospice, they will slowly crawl back up to probably a new plateau. They won't be here anymore. They'll be down here. But after a while they plateau again and they kind of steady out, which is good. But that usually means they won't continue to meet criteria for hospice. We basically need to prove to Medicare that this person still has less than six months to live. And there's things we have to look for and specific diseases. So it can be rough to me. Dementia patients and I'm using dementia very loosely here. So about dementia patients, like there is not a program that's like for them, if any disease falls through the cracks of our health care system, I feel like it's dementia patients. Yeah, I'm sure Careblazers listening right now are saying yes, families really feel like because they're like, listen, we're telling you we don't want any heroic measures. They literally can't get out of the house. We can't get medical care. If we wanted it, why can we not get someone here? And it just to say is like, I hear you and I happen to work for a hospice company now, good or bad, I don't know. But they're really strict. They are really strict. They will follow Medicare guidelines like verbatim, like, for example, someone who has Alzheimer's disease. They look at a fast scale. So they have to be at least a7c or below on a fast scale. They have to have a recent hospitalization for some kind of infection or an albumin level. So they have to had bloodwork recently, things like that where people who are like what they've been bedbound for five years now, we haven't take them to the hospital to get bloodwork, so it's like it's tough. I hear the families, I hear it. It's it's a missing link in our health care system for sure. Yeah. So let's back up a bit. Let's say somebody with dementia does qualify for hospice and they get on hospice. What is hospice doing for them? So we provide all of their medical care basically in the home to an extent, meaning they get this big package over here, which I'll go into in a second, but they don't get this package, which is like taking them to the hospital, being admitted into the hospital, which most families don't want anyway by the time they come on to hospice. But we do give them it's like a team of people. So a doctor, a nurse, social worker, home health aide, chaplain, if they want to volunteer to help them with certain like things like groceries and things like that, and then a 24 hour number that they can call day or night if they need medical assistance or something, makes them nervous or there's a changing condition. Right. It's kind of like they're 911. Like instead of calling them on one to get an ambulance here, take him to the hospital, they can call a hospice number and a nurse can come out and check on what's going on. They get medications delivered. You know, we're kind of like at their beck and call. So I always say when people sign up for hospice, too, kind of like they don't have to, but like, forget about everyone else. All the 800 numbers they used to call that were so hard to get through to anybody, like just call this one number and talk to your nurse. You'll also have a nurse that's going to visit at least once a week. So that's the lowest of the low standards, usually twice a week, but once a week. Technically, Medicare says. So you'll have the same nurse kind of coming in week by week, just checking in on you, medication refills, checking your skin to make sure you're not developing any like bedsores, just making sure the family's okay. Everything's going okay, right? Week by week, we'll check in just to kind of allow the body to be the guide and also be there. If anything comes up. The home health aide can come in a couple of times a week, help bathe them, change them, change the bed sheets, things like that. I always say I think the medical social worker and the chaplain in the most underutilized part of the team because people think like, now like we're so no one wants to ask for help ever, like emotional help get around. Finally, it's like, no, this is the part of the team that can help you emotionally, spiritually, just any kind of support, Any kind of support. It might be lonely. You can't leave the house just to have someone. They're usually really well trained in how to interact with people and how to help in uncomfortable situations so they can really help you. The doctor is in and out like the nurses are really the eyes and ears for the doctor. The doctor will come if they have to, but also the nurses are really always in cahoots and always talking to the doctors to get medication changes and things like that. Yeah. So hearing how difficult it is sometimes for people with dementia to qualify for hospice when people with dementia do. I know often when I worked in home based primary care and saw people in their homes and eventually they went on hospice, you know, people with dementia can stay at that plateau for a long time. And so as you're describing everything that comes along with hospice, which is wonderful benefit and help, it's a great relief for the caregiver as well as a service to the person with dementia. But sometimes because they're staying so stable, so long, when that reevaluation time comes up like it's been six months, sometimes hospice goes away. Yes. Do you find this a lot in your practice? Yes. Yes, yes, yes. Yeah, It's hard. You know, if we can't, it's called like a recertification. Anyone who's gone through this will know. Sometimes we cannot recertify because they just do not qualify. We try best we can to set families up with other resources, but it's just not the same. You know? It's not the same. And it's unfortunate. You know, we try to sometimes like my place of work. We'll try to put them on palliative care or another like home care thing so they can still have like the hospital bed and different things they need. But it's still a pain in the butt, right? Still like a bunch of like hoops you have to jump through to get things like verified and approved. And it can be really, really hard. And I want a better answer, but it's just more like, no. You're like, I think a lot of people think like, what am I doing wrong? Like, why can't we get And it's like, you're not you're not doing anything wrong. I think a lot of families feel almost like it's personal. Like, why would you take it's okay for me, you know? And so I just love that you're validating kind of how this works and what's going on. Many people go through this, and one of the things that I saw a lot clinically is it seemed like both the main family members and the person with dementia did better on hospice because of all of the support and care they were getting. And then when they're like, You're doing so well, hospice goes away, it starts to decline again. Exactly. And then that is honestly, I always say, like, I want you to know that, like, I would never want to take this away from you. I just like, we just legally have to, right? And then usually what we see, they decline and then because they decline, they can come back on service. It's like, it's just it's hard. It's so hard. I think infuriating for all of us. Yeah, It's like, that's ridiculous. So now we have to wait till they decline. Wait till they get a UTI. They have to go into the hospital and then they can come back on service. It's like, you know, it's hard. It's so hard. So one of the things I felt personally, both as a professional but also as a family member helping my mom, who's since passed away, is that hospice is not brought up soon enough. What's your opinion on this from the medical like health care standpoint? Like I remember personally, my mom had been in and out of the hospital. I mean, I can't even keep track, I'd say at least a dozen times in six months and time. And she was frail, underweight, like lots of hospitalizations to me, this was like a big red flag. Hey, can we talk about hospice? Can we bring this up? And I got a phone call back from like the attending. It was like, okay, we'd like to talk to you about palliative care. Don't worry. It's not hospice, you know? And it was like I'm like, I'm the one who asked the question. I'm the one who brought this up. And the response I got was, well, her vitals are good. So we don't need to be talking about hospice. And my mom was dead less than four weeks later. I'm a clinical psychologist. I've been in the health care field a lot with hospice. I'm like, I'm having a hard time advocating for my own mom. And it just feels like, how is anybody supposed to do this? And I think we've seen statistics that most people who get on hospice die within like a couple of weeks, even though they have six months technically. What is it that we don't get people on sooner? I think it's a number of things. It's a number of things, and I don't think anyone's maliciously. I don't think you I don't think you do either. But just so everyone hears me, I don't think anyone's maliciously trying to do anything wrong. I think we are like, I know this because I was an ICU nurse for many years. You get blinders on and you don't learn how to talk to people about death and dying. And also you're not in that business, right? Like in the ICU, Like we're not in the business of talking about death and dying. We're in the business of getting people better. You're in the E.R., They're in the business of fixing whatever it is and getting them out or getting them to the floor. It's kind of like the buck is passed. That's someone else's job. And again, like no shade to anyone, truly, because I know how that feels. Like working in the ICU. You're afraid to be the one that you think I can remember thinking, like, am I the only one thinking this person's going to die? You know, like, maybe it maybe I don't know. Something that the oncologist does know or maybe, you know, so the buck gets passed. And then a lot of times, too, in our especially our hospital systems, there is not enough time. This is like a hurry up and care care. But actually hurry up. Like, there's no like that's a conversation that some people are really uncomfortable having. So it takes and even for them to like the health care professional, it's uncomfortable for them. They're not used to it. It would take a lot of time to sit down with family. They don't know what the family thinks. They don't know if it's ever been approached. So they need some time to do that. Time is of the essence and they don't got it. And I can tell you, because I was in the ICU and there wasn't time, and that's half the reason why I hated working there. I wanted to be this compassionate, empathetic health care worker. But guess what? I have two patients that are like trying to die on me and it's really task oriented and you just can't get there. Yeah, I think that's the thing, too. I think they don't have enough time. And then I think we're just not trained to talk about it. We're just not comfortable talking about it. And that needs to change. Full stop like health care workers. It needs to be especially people in the E.R. because they see a bunch of E.R. things. I get it. That's like not their goal, right? So, like, they just automatically assume it's like not their place to be. Like, have you thought about hospice? You mean because, like, they're the E.R.? But I don't think that's right. I think that needs to change. End of story. Oncologists, please. We need to start having and learning how to have end of life conversations and when. Not even to say when is enough, enough is enough, but when to just say there is another path, right? Like, yes, we can do this, yes we can do this. And there's a third path. It's called hospice. We should start talking about it way sooner than we do, like end of story and then the like. This is a soapbox. Can you tell? I can. Just like all all of this is a soapbox. I could just go on and on. And the last thing I'll say is because our health care providers are not there yet, our health care system is not there yet. I feel like there's a movement towards it, but we're not there. We, as the people that are happening to need to be the voices, like we need to be the people to say, What about hospice, Right? You know, when the doctor says, don't worry, it's not hospice, we say, which I'm sure I don't know what you said. I'm not saying you specifically, but we say, no, it's okay. You could talk about hospice. I was thinking hospice, right? Because you to give them the okay too. I mean, we don't need what we but since they're not doing it, people need to know that this is something I can talk about it. I have a whole entire chapter in my book that's that deals just with this because our health care workers aren't doing it. And because of that, we need to do it. We need to say, I want to talk about hospice when in doubt, check it out. That's what I always say. If you're. I don't know. Yeah. And if they don't qualify, you'll be told they don't qualify. But at least you've opened up the discussion. And I think this is I think that frustrate a lot of family members. But also it just needs to happen is we have to take on that responsibility and advocate. We can't wait around and expect that the health care field is going to bring up what's in our best interest all the time. I think you hit the nail on the head. It's like all of the different professions are pretty siloed off and they're focused on their one area, and it's very rare to have the step back, look at the holistic approach of what could actually help this person. And that's where the audience member comes in. Exactly. And I'm sorry to interrupt you. I was going to say, except for palliative care, I do feel like palliative care and palliative care doctors who are still kind of in the hospital, they are the ones that are trained in all of us. And that's why I always say, like, they need to come in earlier, too, because they're the ones being like, hello, like trying to get the cardiologists to talk to the pulmonologist, to talk to their oncologist, to get like a better understanding of what's truly happening to this person on a like a full person level. Yeah. Do you think it's ever too early for a careblazer to ask their primary care provider about palliative care if their loved one has dementia? not palliative care. No. Palliative care is never too early ever. Always advocate for palliative care. Always. You lose nothing and you gain so much, you lose nothing. So palliative care careblazers, if you're listening right now, that's a big action item, a big thing at the next appointment, or even to call and make leave a message and ask about how palliative care can help your loved one with dementia. Yes, I will say it. Depending on whatever facility you're at there, either it's either like something you can easily get on or there's strict criteria. Specifically where I work. Our palliative care does so much, but it's really hard to get on. But it still is. It hurts, right? When in doubt, check it out. When in doubt, check it out. Just ask for sure. I love that. I want to backtrack just a little bit. Can you share your story of how you got to be doing what you're doing? Because I feel like it's maybe not so unusual nowadays, but it is pretty unusual for health care providers actively working in the health care field to be taking to social media and talking about, you know, really anything in their field, but especially for you, death and dying. How did this come to be? It was like a magical this is why I take it seriously, but I try not to control it at all in the sense of like, I'm just letting things happen because it really happened that way. So one, I became really passionate about death and dying and hospice care because I was an ICU nurse. Like I said before, I became passionate about being a hospice nurse or just doing something else. Right? And as I was a hospice nurse, I've been a hospice nurse for like eight or nine years now. First couple of years were like so eye opening to me as a health care provider because like, I just didn't know. I just didn't know, like the body was built to die. All the amazing things that like literally is like biologically built in our bodies to help us die. It was so fascinating to me. So I really got into it and I really got into like educating the patients that I worked with in their families about all the things that I was seeing and witnessing and learning. So I was really into it really, really passionate about it. And over time that's really it. I would just really into my job, which is really great. It feels so good to like love what you're doing. And about three years ago, to be three years in May, a really good friend of mine, his dad was dying and it was particularly hard for him and his family and he was just calling me on The Daily and his dad was on hospice, but calling me on a daily being like, my God, this is going on, this is going on. I just didn't understand how hard this was going to be like all this stuff, right? And I would tell him all the spiels that I've learned over the years and I would just say my normal stuff that I would say to anybody going through this. And his reaction was so like, I can't believe I've known you for years, and I had no idea that, like, this is the stuff that you would know and like work with every day. Like, I can't believe I didn't know this because like I told you before, my everyday life, normally I'm at a dinner party and someone asks like, What do you do? You say a hospice nurse? And like, they're not asking questions. They're like, great. You either get like, that's depressing. Or like, you're an angel. Like, it's just like an awkward. It's never like, tell me more about death and dying ever. So I usually don't. Anyway, so he was having this experience and telling me how much it was helping him. And then he was the one who was like, You need a podcast. You need to do something with this. You need to tell people this, people need to know this. And that's what got me thinking about doing it. And then I went home. It was like right when things were opening up post-COVID ish, you know, like a year or two out of it. And I went to go see my nieces. They were like 12 and 13. They were on TikTok. And we were there's literally video of me, which is perfect. There's video of me in them like learning a Tik Tok dance and maybe like Tik Tok, like kind of making fun of them and like getting on Tik Tok so I could see the videos they were making of us dancing. And I started seeing like, people my age, I'm 41, like people my age, like talking about things like space and like gardening and like adult things, right? And I was like, my gosh, this app is like, amazing, I love this. And I decided I was going to make videos and I made a few. And I think the fourth day in one went viral. And then like, I just kept going viral and kept going viral and kept going viral. I was just like, I guess this is the thing. I guess people are ready to like, listen and hear stuff about death and dying. And then, of course, I saw other hospice nurses doing that and then I became friends with them and yeah, well, not yeah, I love it. People are wanting to hear what you have to say. And what I really love about the social media piece, which is very awkward and strange, like for me in the beginning, was that the people who follow and watch are the people who are the most interested in learning and the most ready because they're actively seeking it out. Versus sometimes I felt like in the hospital when people had an appointment, it was like, okay, another appointment, check the box. And I'm like, I have people over here lining up to hear something on social media and you're like, blowing off the appointment. You don't get, you know, But I think it really is just this information and having access to certain experts isn't as widely available in all the places. And so having something easily accessible 24 seven where you can learn basic information I think is so, so helpful. Especially, too, which I think you do really well, is just speaking in very clear ways without all of the medical jargon. Yes, That's why I feel like I usually say no to speaking at like medical events because I'm like, it's like me screaming into a vacuum. Like anything I say, you guys already know what I want to talk to. Like the people who don't know and talk to them like in layman's terms so we understand each other. Yeah. And so intimidating. Yeah, I love that. Although I will say I think you have a big need to be talking in medical conferences to people because, yeah, you already know what I'm going to say, but I honestly never thought about that. But it's ever that's ever. I'm like, that's great. Yeah. Because you know, it's like training the front line who are going to be talking to family members about this. How do you get comfortable when it's too soon? I mean, I really still think the majority of the health care field waits until it's way too late to bring it in. It's never too late, but they wait until like the last minute to bring something like this up. And they're all awkward about it. They don't talk about it. I think you could have a really huge role there. But at some point, if I get something to think about, okay, I want to get into some meat and potatoes. Julie, I want to talk about so many family members are worried about how dying looks like. my God. Yes. Can you talk about that? Things maybe family members might want to, but I know it could be different. But things family members might want to prepare for, things that are normal for many people. It's the first time they're witnessing death. Exactly. Yeah. So the first thing I notice when I was started, the social media thing was so many people writing to me, being like, you know, just like spilling there, you know, like my dad looked awful. It was so traumatizing. There was a gurgle. He was drowning on his secretions. He looked gaunt. He was suffocating, like all these things that they thought were going on. And the way they're describing. And I thought, my gosh, that person just sounds like they were actively dying. But like, no one told this person that that's like how people will look and sound and the things you're going to see and why the things are happening. So it can look so scary if you don't and not all the time either. So some people don't look like they're just sleeping. So it just depends. Right? But like people can look and do strange things at the end of life, especially during the actively dying phase, which is the last phase of life. And if you don't know what it looks like and you're not prepared, you don't understand it, you can definitely think your loved one's suffering. And then what does that do? Makes you panic and then you're not really present with what's going on, right? Then you have this like, traumatic experience. It's very traumatizing. It can be for the family members. Yeah, yeah. And I never want to like also I also want to make sure anyone listening like, I don't want to not validate that experience for you. Like, I don't want to be like it's not traumatizing. I get it's definitely traumatizing if you don't understand it. And I think one of the most controversial things that I do, which upsets me because it's not controversial, but social media tells me it is, I'm constantly threatened by social like social media platforms that they're going to ban me because I show real life actively dying videos, followers of mine send me videos. Of course, I cleared legally by getting written permission all these different things about and I try to blur out things as best I can, but sometimes I can't blur out certain things. I want people to see it. I like go see the mouth, see the eyes because it makes a difference. And I show these videos with a huge trigger. Warning, of course, is a big warning ahead of what's going on. Billboard And I explain what everyone's seen. I get the most heat from social media about that, but I get the biggest response back from my followers saying Thank you so much. Like this has really prepared me. And by the time my mom was actively dying, I wasn't afraid and I was able to understand what was happening and other and that is what I want. Because at the end so actively dying, what it can look like if I just want if I just want to explain it is usually. So first off, it lasts for a few hours to a few days, usually a few days. I would say your loved one will be fully unconscious. So they're not awake and they're not eating and drinking. Usually they will be some of us having 24 hours a day, not eating and drinking normal, all normal. Their brain has turned on mechanisms that make them not hungry and thirsty, or technically they've turned off mechanisms that stop that hunger and thirst mechanism and also turn on a mechanism that makes them sleep all the time. Their calcium levels are usually really high, which makes them asleep. That's something that biologically naturally happens, which is amazing to me. So they'll be sleeping or unconscious and their eyes might be partially open and their mouths might be partially open. And this is all because at the end of life, all of our muscles really let go and relax. And it takes muscles to keep our mouths open and our eyes shut or even blinking. That's why their eyes may be open or their mouth may be open. The changes in breathing and then the terminal secretions, which is like the death rattle, are the things that disturb most people. So changes in breathing can looks really scary because one, they're not breathing like we would normally see someone breathe and it can even look like they are like gasping for air which again like even saying that I know scares people. I can truly say this with all certainty. This is a chemical, like a metabolic reaction to our body shutting down. We have like a very fine balance of things going on in our bodies when we're alive and well and healthy to keep us breathing the way we're breathing and the heartbeat in the way the heartbeat. And when that starts changing, the body will purposely breathe differently because the metabolic stuff that's going on in the blood gas and that's going to create a different type of breath. But your loved one is so unconscious they don't know that's happening right? Because you can tell they're not you can tell, believe me. I mean, from a health care worker, if someone feels like they can't breathe and they're awake enough to feel that you will know they will be showing you with their eyes, with their movement, they would be they would they would not be just laying there, sleeping and breathing like that. Also, the death rattle or the terminal secretions is not really coming from. No one was like it's not. People think they're drowning on fluids. Now that can typically kind of happen. It's a whole nother story. That doesn't usually happen at the end of life. On hospice, what it is, is we right now, I just swallowed saliva. So right now our bodies making saliva in our mouth to keep our mouth really moist and our brains will unconscious. They swallow that saliva all day long, every day of our lives, until we're in the actively dying phase. The brain's kind of shutting down. The muscles here to swallow aren't really working. It's not really communicating to swallow, but it's still creating saliva to keep our mouth moist. And then we're usually have our mouths open. So there's a little bit of saliva in the mouth. The mouth is open, and then your breath is going over that saliva and creating like a gurgling noise. And people I get it. People don't know what that is and they hate it. Sounds awful. So I'm getting really long winded, but it's just important to know what it looks like so you can familiarize yourself with this. So when you do see it, especially if you're trying to have a natural death at home, like it's a prepared thing, We don't want to panic then because it's a special time, even though it can feel so sad and so hard, it still can be like a special sacred time. Or you can feel honored that you get to be there with your loved one during their last breaths. And of course, when in doubt, you can always call your hospice team and make sure it's all normal. But it's good to normalize yourself because if you're not used to seeing it, it can seem real scary. Yeah, and that's where hospice can be so helpful. Just to explain everything what you just did, I think it was especially helpful to say if somebody really can't breathe and they're aware they're going to be moving, flailing, doing something to indicate are suffering. And that's not the case for people who are actively dying. You know, we're talking about educating family members. However, I know as a psychologist, going into the homes when I was in home based primary care, I remember the very first person I saw who was actively dying. I think he was like 24 hours from dying. His eyes were halfway open. He had the death bridle. I had never seen anything like that before in my life, and I was scared. This wasn't something that I was taught or learned or even saw until you're actually in. I was in there. I can still remember it very vividly, like in the living room. And here I am trying to control myself while his life is right here with me. Like, my goodness, you know, look what's happening. But we don't see it. We don't talk about it. The fact that you're sharing real life images and videos of how this looks and, you know, discussing it, I think can be really helpful so that when it does happen, it's like, yes, this is the thing Julie was talking about. This is the thing that's normal. Yes. And some of those breaths are like a natural bodily reflex. So the person is like some of the very, very end of life breaths that some people have. The person is. There isn't even a real breath. It's like a biological reflex of the body, which I think it's really hard to like see that when it's your loved one, right? It's easy for me to say it. This is not my mom, right? Dying, at least not this moment. But I think it is important to know that there is a biology due to this. So there are like just like a baby when you they have like a sucking mechanism. It's like that. It's like also I always referred to like a baby. Babies can't verbalize what's wrong, but they cry. They can be restless, they could be fussy. You know, you can they can be extra lethargic. You can tell when something's wrong with the baby, even though they're not verbal. And that is like a dying person. Yeah, you can tell. And if you can't tell, ask, ask a medical professional who can. I love that. Now, we could probably talk for hours and hours about all the symptoms. You know, maybe some of the surprising things that could happen, you know, that you might witness. There's just so much to talk about. I know it can't all be done in this video. However, you have something really exciting. You have a book coming out. I do, Yes. I have a book coming out June 11, June 11th. It's called Nothing to Fear. Yes, Nothing to Fear. Demystify in death to live more fully. There is something about I truly mean this. There's something about understanding and preparing for death in a general way that can truly help you live better lives better and die better. I love that. So I know that several of our Careblazers have already preordered your book, so it's available for preorder now, right? It is. Obviously, I can't be sure to link to that in the description below. Careblazers. If you're interested in learning more about the dying process, Hospice supporting Julie and everything she's doing, please check out that link and the description so you can get your hands on this book. I'm excited to get it. Is there anything, Julie, you think that would be helpful knowing our audience, family caregivers for people with dementia? Anything I haven't asked or anything, you think that would be good for them to know as we end this talk today? man, I think you a lot of it. I think the only thing I too have people remember is, you know, when you're laying in bed and if you're thinking about, well, what about this or what about that, or am I doing enough? Am I not? You know, if you're, like, reeling in bed, which I know I would I would do that. Remind yourself, I think these three questions is my loved one clean? Is my loved one safe? Is my loved one comfortable? If you can say yes to all those things, you have done enough. You have done enough. And today's a new day. Like each day. Just remind yourself of that. Are they clean? Are they safe? Are they comfortable because he bought dementia at me So tough because you want them to eat, but they won't or you want them to do this and they want or that they're doing this. So it can be so frustrating and so hard. And you and you just sometimes need a reminder of like settling your brain down a bit. Are they clean? Yes. Are they safe? Yes. Are they comfortable? Yes. You know, and now if they're not, you can if they're on hospice, you can call the hospice team and try to get some help. But in general, if your mind's kind of spinning like a can, ask yourself those three questions. I love that. And Careblazers, please call up and ask about palliative care right away. You can even ask that hospice if you want to, but at least call for palliative care. Julie, Thank you for taking the time out of your busy schedule to chat with all of our Careblazers. I'll make sure to also link to your social media Careblazers. Go watch some of those videos, Take your learning even further. Familiarize yourself as much as possible. It's happening to us all. We're all going to die. We're all going to witness this in one way or the other. Many of us, especially if you're following me sooner, probably than later. So thank you for sharing everything that you do, Julie, and it's been a pleasure. Thank you so much. Thanks for all you do. Thank you. Also, Niko gets a belly rub for every person who subscribes from this video, so if you haven't already, click the red subscribe button. It's totally free. And Niko says, Thank you very much.
