Lewy Body Roller Coaster
Lewy Body Roller Coaster
Hospice 101- Part Three
Welcome Vangie Jones, a hospice nurse for 20 years as she shares with us all we need to know about hospice including the myth that it is only for the final days or weeks. This will be a three part recording since we had so many questions for Vangie that we all want to know
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Hello and welcome to our podcast about living on the Lewy Body Roller Coaster a podcast for Lewy Body Dementia patients and their families. Presented by Lewy Body patients and their families.
Speaker 2:You will hear firsthand the ups and downs and twists and turns of Lewy Body Dementia from families directly affected. We'll share our support and experiences on all things Lewy Body.
Speaker 1:We're your hosts, Linda and Curry. I have a loved one with Lewy body dementia.
Speaker 2:And I am living with Lewy body dementia.
Speaker 1:Let's get started.
Speaker 3:All right, welcome back again for part three with Vanjie. She's been a trooper, and, curry, you've been a trooper too with recording, because I know it's hard for you to record, but we just knew this was such a really important topic that we all really need to know about. Do you want to ask her the next question, curry?
Speaker 2:You betcha about. Do you want to ask her the next question? Curry you betcha Vanjie? I read that the biggest challenges for hospice are combating misconceptions, late referrals and managing expectations. Do you agree and can you elaborate on these?
Speaker 4:I think that that is a big problem for hospice companies to get their message out in the fact that our misconceptions can be. It's so true, because one major misconception I hear all the time, I've heard it for 20 years well, if you're going to bring that hospice in, they're going to be dead because they're going to give them that morphine Number one misconception, then they're going to be dead because they're going to give them that morphine Number one misconception. Studies have proven that getting a patient's pain controlled increases time lived by 27 days. Now that might not seem a lot, but if that pain's been out of control and it improves their ability to communicate. So what happens when we give morphine is if a patient dies after starting morphine, that patient was actively dying, very actively dying, and everyone was in denial. That's just an honest conception, my opinion, because morphine, what it does does, it actually causes that client, that patient, to have more conscious moments because our body will make us unconscious with chronic pain so they can have conscious times of spending with their families. So that's misconception number one, that we're going to kill them. Another one is oh, they're not going to feed them, they're not going to give them. You know they're going to stop the very feeding. No, no, no. Now are we going to encourage you, as caregivers, to not force feed. Yes, because if you're having to force feed, they're not swallowing, right, you know, and so you're going to choke them. But in the dying process, when a patient is starting to get to the point they don't eat or drink, it is because they're in a new phase and they're dying. They're in a spiritual and an emotional state, so they're interprocessing. They don't need the nutrition they needed before. And so we encourage you okay, if you offer your Lewy body patient something to eat and they don't want it, let it go, come back to it later, maybe they'll have it later. But don't also say, oh, you have to eat. If you don't eat, you know, you just gotta eat.
Speaker 4:And I always tell my families we live in a society in the United States, in Western civilization, where food is our comfort area. We do food for birthdays, for bar mitzvahs, for anniversaries, for family dinners, for Christmas, everything. That's when we feel we are giving. We're giving through our food, and so it gives that caregiver something to fulfill that. What I tell my caregivers is or what I did, is you know what, when they say they don't want that it's okay. You know how you can give to them.
Speaker 4:Get some lotion and massage those legs. Get some lotion and put it on that back. Talk to them, start doing memories, start talking about that life journey that you all have had together, because they need to take those memories with them. They're not going to pass on until they know, a their life has had purpose, a their life has had purpose and B that their traditions, their things are going to be carried on and that their loved ones are going to be taken care of. And so that's a big misconception is that we're going to do that. The other misconception is that when we talked about earlier that you're going to get thrown out if you lose weight or if something changes, nope, not from six months. You're going to be in there carrying on, you know. And so I think there are some very, very important misconceptions. Hospice does not believe in euthanasia. Guys, we are not coming in to do that. Our goal is about in the life and how to make it quality someone asked if hospice speeds up dying and hospice.
Speaker 3:What speeds up dying?
Speaker 4:no no, yeah, and in fact we won't. We won't. I've had plenty of clients in 20 years say um, I want you to end this and I'm sorry, I'm not god I can't do that I can't do that between you and you, and and you'll get there when you're ready to yeah, yeah, but that's a.
Speaker 3:That's definitely a misconception that people think right like yeah we're about physical, emotional and spiritual support for everybody.
Speaker 4:Yeah, and, and, and.
Speaker 3:There's no place for euthanasia in that right and I I just until I got involved on this journey. And more now on to what hospice is. Honestly, I thought hospice is called when you only have like two weeks to two months, you know, less than two months or even two weeks left to live, and clearly that's not the case, as you so eloquently shared with us, that it's to help you have a better what's left of the time that you have.
Speaker 4:Exactly. And you know, if somebody does die within that first three or four days, like I said before, they were actively dying. They were waiting. They were waiting for their family to get support and for them to be given permission.
Speaker 3:And once they knew everyone was going to be supported, they, they, they passed themselves on, they, they move on and um, and that's okay that's what uh bonnie had shared with us is, uh, her husband, randy, was really holding on and she, I think she said she grabbed his hand and said it's okay, it's time for you to go, like both of our children. It took a few days for both of our children to actually fly down to see him, but then she's like, it's like she gave him permission and then, and then he and he passed. So the next two questions kind of um, I gave curry a break, just just so you know he I made him go walk, take a walk. He's not being punished people, he can't sit still that long.
Speaker 3:So the questions are and this might be hard to ask or even for our listeners to hear the answer to, but people have asked us to ask how are Haas's people sure someone is going to die? Hospice people sure someone is going to die, and can you share with us things to look out for that might indicate our loved ones have taken that turn? Because you talking to me and me talking to my girlfriend, I he clearly was already in the process when she called hospice, you know, looking, looking back. So what could you share with our listeners to look out for?
Speaker 4:Okay, well, there are symptoms and first I want to give them a name of a book that anyone can get. Okay, and this book is wonderful and it's called Gone From my Sight. You can get it off Amazon. What's it called? Gone From my Sight? And you can get it off Amazon. I think it's $7.99. Last time I looked, it's by Karen Cantran, I think. Yeah, I'll look it up. I'll look it up. Yes, and this book goes through the phase and it starts at about six to four months.
Speaker 4:Here's the symptoms you're going to see and all diseases I don't care what they are all diseases are going to start having some of the same symptoms. And so when you're looking, there's a three-week prior to any acute phase and that's where they just started really slowing down. They maybe became very quiet, pensive, they're doing a lot of inner thing. They seem like they're sleeping all the time, but they may actually not be sleeping, they may just be processing internal thought in there and they start eating less. They become much weaker. Symptoms you're going to see the last week to death are symptoms like blood pressure drop. Hands and feet are cold. They will also be very mottled. The skin, the feet, the knees, the feet, hands. They become purplish, pale gray, they are blotchy or mottled that's what we call. It is mottling and then the arms are cold, but the trunk will feel very warm or hot, like there is a temperature. They may become unresponsive Not everybody does.
Speaker 4:There'll be periods of rapid breathing where there's also a period following where there's apnea or no breathing and that will start leading to a girdling congestion. Now what is that? That is because they're not swallowing and the fluid that drains from our saliva and our nose isn't getting swallowed, it's getting stuck, and so we start seeing that. Then you start seeing increased shallow breathing and those are the signs and symptoms that you can really start looking for right away.
Speaker 4:In that three-week period before that, you're going to see, like I said, less food and drink, increased sleeping, increased restlessness, increased anxiety, and almost every single patient is going to have that increased restlessness and anxiety. It is the body's lack of oxygen, the brain's lack of oxygen. As we're getting closer to death, it increases that restlessness and anxiety. It is also the soul trying to leave the body and that's a difficult process, and so definitely everyone should get that book. This is a book that we gave to all our hospice clients because it brings you right down to the final stages, so you can look at that and say, oh whoa, maybe I should be calling hospice. We got some of this stuff going on. So her name is Barbara Karen. Yep, she's a registered nurse.
Speaker 3:Yep, just found it. Okay, I ordered it while we were talking.
Speaker 4:It's a great book.
Speaker 3:It's just a great book. I keep going back to Bonnie, because she literally came on the day after her husband passed away because she just wanted to share her experience to help other people. Sure, and everything you're saying is I hear her telling me, you know, as it was leading up to hospice actually coming, and then, when they did come, so someone asked, asked, asked if you could talk about and this was someone with Lewy body as this can she talk about how we can stop our medications, choose to stop eating and drinking when we get to the end stage, we don't have to suffer anymore? And there's a thing we mentioned Five wishes.
Speaker 3:Yeah, Long time ago we we talked about the five wishes.
Speaker 4:Every patient in hospice. That's why you sit down, that's why you get it soon enough so that their their wishes are being followed. Um has the right to reach to stop medications, food and water at any time they choose. Okay, um, that's their choice. They can choose how their process is going to happen. Okay.
Speaker 4:So then the next question is going to be well, how long can they live without food or water? So that depends on the individual. First of all depends upon how much adipose tissue you got. If you've got enough fat on you, you can live a little while. But general rule is you can live without food, food for up to 21 days, wow, okay. Now water is a different thing, you know, um, but I will also tell you the body wants to get dehydrated before death, because dehydration brings a natural body's pain relief. And if you think about when those patients can't move themselves, that skeletal system is now the heaviest thing on that dying patient and it's heavy and it hurts when it gets stiff. And so dehydration helps kick in your own endorphins to help relieve that pain. And so the body's natural response is to stop eating, stop drinking. But a client can choose that whenever they want. That's their choice, because we acknowledge that there's a death coming. What happens is how do you want it, and that's your choice.
Speaker 3:Yeah, Did you just sorry. I was looking at, I'm taking it all in, Sorry. Did you say how long they can survive without having?
Speaker 4:any water. Yeah, that's a little bit different. And once they start getting dehydrated then your kidneys shut down, you know, and um, those types of things. So that's when I always say that that usually is that you're going to have like five to seven days now. And everyone's different.
Speaker 4:Yeah, but generally um if they're taking a sip. They might take a sip every two hours. That may be all their body needs to be to keep going. So it it just depends on how much. But if they completely stop drinking and stuff, then you're looking that we're getting very close, yeah, so especially when the urine gets very dark, very concentrated, or it's stopped, no urine output, and it's not because we have a distended bladder.
Speaker 3:Right, so this question goes with that, kyra, we always talk about pee and poop in our support groups because it's a thing. Does hospice more times than not put a catheter in to avoid agitating the person who's actively dying?
Speaker 4:Here's why we put if a catheter goes in, it's because that patient's become bed bound and incontinent but maybe not be at that phase yet, that acute dying phase. To prevent bed sores and stuff. We try not to put them in any sooner than we try not to put them in at all. But if we need to, then it's not something we're going to do per se at the last, unless, unless, guys, it is a comfort measure also to the caregiver, because they can't do the turning and the care that well then, that might be a reason we would.
Speaker 3:Yeah, oh, I just had another question. It went right in and right out. Hopefully, hopefully, it comes back to me.
Speaker 4:And if we're going to talk about poop, which I don't have any problem talking about but, um, I always tell everybody that, even up until the end stage, that last week they didn't need to have a bowel movement. You have 27 feet not inches feet of intestine, so it takes a long time for someone that's not active. If you're up and moving, okay, you're moving your peristalsis. When you're no longer active, that peristalsis isn't moving. It takes a long time to get from here to there, and so a suppository needs to be given. If you're no longer swallowing on a regular basis, okay, so that those bowels are moving, because that also is a very discomforting thing. When you have a distended abdomen because you've been constipated or you have abdominal cramping, and so your nurse will stay on top of that, they'll either give enemas or they'll give a suppository, those type of things.
Speaker 3:Yeah, I know Constipation is a big thing. It's either one way or the other. Right, curry One way or the other. And here I wrote it down, how, which I was surprised. How long do bed sores take to actually manifest?
Speaker 4:Let me tell you, in the dying process there was a specific type of bed sore called a Kennedy's ulcer. Okay, and one can look it up. It felt just like the kennedy's and it is a bed sore that shows up within 72 to 48 hours of death. It is a sign of imminent death in some people. So a caregiver changed them in the morning, bottom looked good, turns them over at three o'clock in the afternoon and this is giant purple spot on their coccyx area. That's generally probably a kennedy's ulcer and it's saying life is intimate because death is in an imminent, because that's an ischemic area, that bonyony prominence.
Speaker 4:Blood has slowed so much it's not getting there at all. In a patient that's just bed bound, okay, but they're still cognitive, they're still eating and drinking. As long as someone is turning them, it doesn't generally happen until you start seeing nutritional deficits. They stop eating as much and then they can come very quickly. I had a sister-in-law who just recently died herself with hospice and she could not turn and could not stand to have her left leg touched because she develops blood clot in it and and so it took very and she was a very bad brittle diabetic so it took no time for her to start getting some bad um the cubes yeah, I know, um, I keep going back to you, bonnie, if you're listening.
Speaker 3:She had, didn't she tell us curry like within days, I guess it. I can't remember exact time, but she had said how he got bed sores, and I was shocked that it happened so fast, and what you're saying.
Speaker 4:I'm glad I remember what I was going to ask you with that, because that's just another sign to look out for, I guess when they get to that, I guess when, when they get to that Another sign that the blood flow has slowed so much in that body because that body has slowed down and is getting very prepared for death, that those areas are popping up everywhere, yeah, and that's when they need to be turned. Very often, you know, every two hours repositioned and pillowed and stuff like that. So that's when you want to know you have a really good mattress on that hospital bed.
Speaker 3:Yeah, I heard one caregiver speak of terminal agitation. I know that kind of goes with what we were talking about above, but someone wanted to know details. I guess not everyone does everyone in the dying process go through that terminal agitation phase or no?
Speaker 4:Well, to say everyone dies is too general, because that's not necessarily true. You could have somebody that has been unresponsive for a long time. You know that. Let's take an Alzheimer's patient who has not beenive for a long time. Okay, you know that. Let's take an Alzheimer's patient who has not been cognitive for a long time in a nursing home, but they still get them up and they're still kind of feeding them themselves, kind of force feeding and stuff like that. That patient has been slowing down for so long they may not have any terminal arrest.
Speaker 4:Terminal arrest, islessness. You see more when a patient has been cognitive right till that last couple weeks or so, that last three weeks, and then they start having less let, then they have less, um, oxygen to the brain. Things are, you know, they're starting to have some breathing problems, that type of thing, and that's where that restlessness comes in and that agitation. We call it terminal restlessness, um, and they're kind of just all over the place and and um, they may even be I gotta get out, I gotta get out, I gotta get up, I gotta get up, those type of things that's exactly what one of our one of the members in our support group's sister had explained to us, which goes with your next question, Curry.
Speaker 2:Yeah, how would hospice help someone who starts having breathing issues?
Speaker 4:Well, it depends on increasing nebulization treatment. Maybe the person has had some aspiration and so they're having some lung congestion, but he's so close to death the family does not want him treated. Okay, so then we might bring in oxygen um for them to make, and also we give some medications two most common are um atropine and scopolamine um, and those are really antimucolitics and um antichologenic, and what they do is they help dry up that secretion that's developing, that's causing them to have some breathing problems. If it's due to that problem, we're going to teach them. We may need to teach them raise your bed more often, those type of things. So we're going to do what we can.
Speaker 3:I know, hopefully, we've asked you all the right questions that our listeners wanted to know um, so I need to ask you this next question do you think we missed asking any specific question that loved ones need to know about hospice?
Speaker 4:I think that you need to know about one thing for sure Every hospice should provide to a client on a mission or within 24 to 48 hours, what's called a comfort pack. We used to call them emergency drug kit, so that there are emergency things in your home that you can, and so what they're going to cover is pain. So there's going to be some either morphine or oxycodone one of those things because they're utilized not just for pain, they're utilized for shortness of breath. They help bring that breathing down so that patient is not getting hypothyroid from hyperventilating. There's going to be medication in there for secretion. There should be some Tylenol suppositories in there for temperature.
Speaker 4:If they're not swallowing at that point, you're going to have medicine in there for restlessness. Now you have to be careful, guys. Remember. You know the meds that your Lewy bodies can take alopecia and all those type of things. However, in the very end phase, like that last three days, that is a good drug. Maybe too if they're having severe agitation. But you need to tell them up front. You do understand, because all hospices just kind of put that in there unless they know, and not all hospices are going to know. You like you know you.
Speaker 3:Yeah, and know Louie body like we know Louie body.
Speaker 4:That's right. So you're going to have Tylenol in there, you're going to have something for breathing, something for agitation, something for pain and shortness of breath, and that should be there. So they need to make sure that they're getting that comfort kit. Okay, you don't want to be two o'clock in the morning and need something. They say, well, it'll be 48 hours, that's the other thing.
Speaker 4:A lot of companies may use a drop agency to bring your meds to you. It takes a while. Ask that question. When you sign up, do your nurses bring it out? Can my family pick it up? How is that going to work when it comes to any kind of meds? Because they should also check all your meds every time they're in the home and anything they're financially paying for. They should make sure you always have a week to two weeks worth in a home because of weather, you know. So that's one thing that I think we need to remember. I think the other thing is just remembering that, follow that FASTA report, get someone to come out and just assess you, especially if you've had any urinary tract, any bed sores, any forms of pneumonia, whether it's aspiration or bacterial, because that loved one could benefit from this service and so could you, because it's not just for them, and remember that assessment does not, should not have a charge for it, for sure.
Speaker 3:Yeah, that's great to know. Did you see me raising my fingers, Carrie?
Speaker 2:I did.
Speaker 3:And before Carrie starts with thanking you, I know our girlfriend was very stressed out when they mentioned Haldol, because those of us in the Louis world we're like no cross, there's no way. But they said only given when he's near death, and he was.
Speaker 4:That's right, and it would only be given. And I think Ativan is probably on y'all's list too, isn't it? Yes, yeah, yeah, and those are generally the first two. But before I threw away Ativan, I would try to throw away Thorzy. I would say, ooh, stay away from Thorzy, you know, and that's one that some agencies use because it's an old word, that's cheap. And I'd say, you know, I'd rather try a little liquid Xanax, because you can do Xanax. Right, can y'all do Xanax? Yes, yeah, well, xanax comes in a liquid. With lots of agencies I've had a lot of Lewy body patients that were still ambulatory and moving, but they were having episodes of severe restlessness, agitation and stuff. Get them a little Xanax liquid because they could take it. We'd put it in a little juice and get it down. So you've got to let them know. We know we can't take these drugs, we don't want these things. Only at the last thing.
Speaker 3:Yeah, I think all of our listeners have the NIH Lewy Body book that lists the things you can't take, because we've got it right by our, you know, right with us.
Speaker 4:And that's good because you might get a hospice that's never had a Lewy Body. You know they're not educated. I always speak and everybody's different, but I always believed that before I went into a patient's home I better know where I where I'm going and what's it about. And so, even if I did not know, that disease there's a lot of a lot of dementia diseases.
Speaker 4:You know, I researched it before I went to that home. I wanted to know what I should expect, so I could also paint that picture. Yeah, okay, when are you at? So, yeah, you want a good team for sure.
Speaker 2:It sounds like that you formed a very good team. I've got to tell you that I wish all hospice people were as informed as what you are. Yeah, Well thank you.
Speaker 4:I had an excellent. I worked with an excellent team. They weren't my team, but I worked with excellent people and actually I will tell you that every single nurse I worked with in 20 years had never thought of hospice. That God called each one of them. He took some of them from labor and delivery and they became the best hospice nurses you ever saw. And I didn't go to hospice. They came to me. I was doing care with chronic AIDS clients and chronic children that were born with deficits, that were going to be terminal, and I prayed about it and God said, yeah, that's where you're going to be terminal. And I didn't. And I prayed about it and god said, yeah, that's where you're going. Wow, it was.
Speaker 3:It was the most rewarding, happiest 20 years of my life wow, well, we can't thank you enough for coming on and sharing, and I can see why. Thank you shout out to uh, ivan eddie, who are your brother and sister-in-law brother-in-law and sister-in-law. Now I know why they put me in contact with you, vanjie, because the information you provide is going to help so many people. So any last final words before we start our ending. Just seriously, I can't even I don't know about you, curry, but I feel like I'm a hospice expert now.
Speaker 2:I'm so glad that I heard all this.
Speaker 3:Yeah, he really needed to hear from, and this just goes back to something you said, like having somebody in hospice telling the person you need to do this because you know sometimes they don't listen to the family. It's just, it's good that people are hearing this from someone other than their loved one.
Speaker 2:Definitely.
Speaker 4:Well, I want to thank you all for asking me. It's been quite an honor. It's a love that I'm never going to get over. I'm going to always be a hospice nurse, even though right now, what I'm teaching is people how to have quality in a different form, and so I truly, truly thank you. Thank you for allowing me. It's been an honor.
Speaker 2:Well, I want to personally thank you too, and I tell you, sitting here listening to you and all the information that you've given out, it's just tremendous.
Speaker 3:I'm in awe of all your knowledge. We have people that can't read anymore and listening is a thing, but yeah, yeah, thank you in awe. Yeah, because all your knowledge. We have people that can't read anymore, like and and listening as a thing, but yeah, yeah, thank you well, folks, that's all we have time for this week.
Speaker 2:Uh, once again, thank you, vangie, for coming on. We really appreciate it and folks remember you can email us with suggestions on what you'd like us to discuss on a future episode, or you can ask any questions you have, and we'll sure do our best to help get you the best answers possible.
Speaker 3:And if you want to learn how you can become a supporter of the podcast, please see the episode notes below, which I will remember to do. Curry, he told me I forgot to add that link because we post the information under the episode notes for you to become a supporter, because the more people that support us, the more people we can help.
Speaker 2:Okay, folks, thanks again for joining us.
Speaker 3:Until next week. This is Linda.
Speaker 2:And Curry signing off.