Lewy Body Roller Coaster
Lewy Body Roller Coaster
Hospice 101- Part Two
A tough topic but one we all need to know about sooner than later.
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, let's continue our talk with Vanjie and ask some more questions about hospice. So, curry, you want to ask the next one, you bet?
Speaker 2:Vanjie, let's get into more of the services hospice offers. You kind of touched on it already last week, but can you share with us the services offered to the patient and are there any services for the caregivers as well?
Speaker 4:Yes, so hospice, like I said before, is a multidisciplinary team approach. That means every patient has their own team and that's going to include the medical director for the hospice plus your doctor if he chooses to stay active. It's going to include RNs or nurses, home health nurse aides, and that's someone that can come in and help with bathing, trimming nails. If it's a woman patient, you know they're going to paint their nails, they're going to pamper them, but all those things they're going to do those things. They can also be responsible to clean the immediate area of that client Okay, their bedroom, change the linens, change the bed, those type of things.
Speaker 4:Your volunteers, like I said, they can bring meals into the clients and their families they can come sit with. The only thing they don't do is they can't hand, deliver medications to a patient, but they can open a med box and say, or hand them a bowl that their spouse has put in for them. They're there so that the caregiver can get an outing, can get what you know, maybe she wants to go to church, maybe she wants to go to the beauty shop, maybe he needs to go to the barber shop, you know. And so that volunteer, like I said, they bring meals in, whatever's needed, and that you work out between you and the volunteer yourself once they're assigned. And that's why.
Speaker 4:And then there's a social worker. Now everybody on your team is required by law, by federal law, under Medicare criteria, to be in the home and have met the client and the caregiver within one week. Okay, now, that's a lot of people in a week. So what they generally do is they call and say you know, if you're not overwhelmed, do you want us to come? The social worker, the chaplain, those people, do you want us to come? Maybe next week?
Speaker 3:But by law, everybody needs to be in your home within a week, a week from when we call and ask for an evaluation.
Speaker 4:A week from the time that the nurse comes, assesses and you sign papers to go into the hospital. That plan of care is written within that 24 hours. The team is notified and you're going to start getting calls. And so the team also involves a pharmacist. The pharmacist has to be actively involved. Weekly or every two weeks, they have a meet with a multidisciplinary. The whole team comes together in regards to just that patient's care and the pharmacist is there and he looks at drug interactions, he looks at dosage, he looks at those type of things.
Speaker 4:Um, and so the pharmacist meets the doctor, meets the social worker meets the nurse, meets. They look at that. Um, so for the, for the client, all those services, okay, are being provided for the caregiver. You're going to have a social worker. They're going to help with finances. They're going to help look with do we need to get more services in the home and how can we do that in a community? Help them. They're going to have lots and lots of counseling for that caregiver. Okay, that's someone that's not just going to visit on a regular basis and they usually visit that setup between the caregiver and the social worker but they're going to also call on a regular basis and you're going to have their number to call when you need them. Okay, to talk when you need that support.
Speaker 3:Can I ask a the social worker? There would be one assigned like to my husband and a separate one assigned to me as the caregiver okay, no, it's generally the same okay because it's, um, because of that team approach as we look at it.
Speaker 4:So it's generally going to be the same, but generally, um, by the time excuse me, by the time that the patient, uh, is in hospice, they're maybe not going to be has, uh, that they're going to be as cognitively involved maybe, and so they might not want to see the social worker as much, but that social worker is there. They're there to help make advanced directives, help with funeral, help get that set up. If there's not finances available, help find those finances for funerals in the community. It's endless what your social worker can do for you, um, and so that's your team and that's pretty much. They're also gonna um in regards to like equipment they provide.
Speaker 4:They also provide personal care of things like, um depends um, maybe, uh, lotions for skins, heel, heel, bows, elbow pads. They're going to provide a chucks. They're going to provide mouth swabs. They're going to provide all those things, and they're going to teach that caregiver how to use all those things, how to turn their family member with it. It's there to make life better for everyone. We want that end ofof-life experience to have quality and to be loving and compassionate.
Speaker 3:Yeah, and what you're saying is what Bonnie was explaining to us is because she waited so long, which I totally understand. She waited so long, which I totally understand. You know, we always we think we're super women and super caregivers. That it was.
Speaker 3:She got all of it all at once and she said it was very overwhelming, like four hours yeah four hours of this and this, and she said people coming and going, and so that, and right, there is another reason to get it started, so that you're not trying to get the services when you're already overwhelmed overwhelmed.
Speaker 4:Yes and saddened yes, both. And the other thing that they provide is what's called bereavement services. Okay, and you want to know that they have a bereavement service and that means that generally what it means is they're going to follow you for 13 months following your loved one's death. They're going to write, they're going to call, they're going to visit. Some agencies provide memorial services, like the one I worked for with 20 years.
Speaker 4:Every year we had a memorial service at one of the local churches. Family members, the entire family, even if they weren't directly involved, are invited. They can read poems, they can read scripture, they can tell stories about their loved one and it's a memorial service for them to then be able to touch base with their hospice team again, but to just bring a celebration of life in regards to that patient. And often that bereavement service will also have certain things for children. If there's children in the home still maybe they provide. Ours provided a camp every year that was free. It was a three-day camp for children who had lost their parents or maybe grandparents, it doesn't matter and health-free for them. So we want that bereavement service because even though that patient's gone, there's a big void in that life, you know still.
Speaker 3:Yeah, and I know sorry. Someone asked us to ask, which I'm pretty sure you already touched on and just from having Bonnie on, someone asked can we keep our loved ones at home and who determines that home? But is, will there ever be a point where, like you explained with curry's question, um, where hospice will say listen, you know we can't control the pain and we can't, you know, we can't, control the agitation. We need to, you know, send them or send them somewhere, or is it up to the loved one to say no, they're staying here that's right.
Speaker 4:It's a if, his, if the patient's goal was to die in their home, surrounded by their loved ones, with their loved ones following their wishes, then that's that's. They're going to keep them at home. But if it's something that, um, and if they're not that close to and if they're not that close to death, okay, if they're not that close to death and we've got a serious problem we need to address maybe it's agitation and pain they're going to maybe offer hey, let's put them in, we'll get them back home. You can go to the hospital too, or you can take this time to rest. We're paying for it and we're going to get them back home. We're going to get this symptom under control. We're going to back home because that's where they want to be.
Speaker 4:Now, on the other hand, there are some patients that do not want to die at home. Okay, and so if that hospice has an inpatient unit or a contract with a hospital so that that client can go in, then that's an option. Oftentimes, a hospice will say, now, they're not supposed to say this, okay, well, I'm just going to say it anyway. They're not supposed to say it. They're not supposed to say that. They're not supposed to say that They'll say, well, then you need to sign out of hospice. No, you, getting out of hospice should be your choice and you can do that at any time and you could go back into a hospice.
Speaker 4:So let me give you an example. Let's say the patient fell and broke their hip and you wanted to get him in and get him surgery. So then that's the time to sign out of hospice get in, get your care, come on home, go back into hospice. However, you don't have to sign out of hospice because your medicare if you're under for louis bodies, your medicare is going to pay for a broken hip, like you didn't even have hospice. Okay. So, but a patient can get out of hospice anytime he chooses and they can go back in at any time they choose. The same thing they can change companies one time in a certification period. So what is a certification period? That's that 90 days, that six months? Okay, 30, 60, isn't that six months? Yeah? And so in that certification period, you can change a company one time under Better?
Speaker 3:90 days is three months.
Speaker 4:Okay, well then go back 180 days, that's right. I'm sorry I'm a mistake, but in that six month period you can change companies one time. So if you didn't like your company, the same thing. Let's say you were in New Jersey, right. And let's say you would have had hospice and you decided to move to Louisiana to be closer to family you could have had your hospice transferred. Your hospice up there would have transferred you to a company down there.
Speaker 3:That's good to know.
Speaker 4:Yes, and the other thing is to remember when you're in hospice, you are not home bound. The goal is generally what I would always ask my clients when I went in to assess them is what is your long-term goal? What is your long-term goal? And now tell me what your short-term goal is. If one of their goals they wanted to achieve was to go on a cruise, we have sent them on a cruise with emergency meds and phone numbers, and we connected them through hospices all along the way, because it's about life, living it until it's no longer that option, and so you're not stuck, you can go, you can do, and that hospice should be able to help you do that.
Speaker 2:Wow, all right, kari, yeah, someone asked and I guess this is a good question. Should I include hospice care in my advanced care planning?
Speaker 4:Yes, okay, planning, yes, okay. Now let me um when we're talking about advanced care planning, because there's a difference in advanced care planning and advanced directive. The advanced directive is what you fill out after you sit down and talk about your advanced care planning, but you need to let whoever's working with you to help you with your advanced care planning to know I choose not to be on life support, I choose not to be resuscitated, I choose not to have life-sustaining interventions, I choose not to be given. Some people choose not to have antibiotics, some people choose you know what I'm saying. So, if so, when that comes, I choose to have a hospice to provide my care in my home.
Speaker 4:Okay, so then you've written it out so that everybody will follow your wishes. So I think it should be part of it. A advanced care planning meeting, it needs to be discussed, and I think that then you need to make sure you have an advanced directive. I guess some states call it a living will still, but it's an advanced directive that says this is what I want and, in my inability to make that decision, this is the person I have designated to make that decision and to follow my wishes yeah, so, um, someone asked us to ask what type of medications.
Speaker 3:Well there's, I'm throwing an extra one in there. Do they have to stop medications when on hospice, and and or what type of medications can are the ones be on while on hospice? Can they be on psychiatric meds like ericep, sleep meds, and can they still see the neurologist, or do they have to change to all hospice doctors?
Speaker 4:That's a misconception too. Hospice does not make you stop your medicine. If you go under with Lewy Body and the medicines you're on are still providing you quality of life, they're still working. You're swallowing them. They're paid for Hospice that goes under their hospice criteria, so it's paid for. You don't need to Now.
Speaker 4:The nurses will tell you when it's probably time to maybe look at changing things. You know, maybe we need to go off this we're. You know, let's get rid of some of these meds because they're not having as much um, not swallowing as easily. So we need to look at doing some things different. You do not lose your doctor. You can still keep your doctor. Now, when you're talking about urologists, is that your primary doctor for your Lewy body? And if it is, then he can choose to stay and he can he'll. What he'll do is when you go to see him, because I'm assuming you want to continue to see him. He's not going to come to the house, but if you continue to see him, then that is, his bill is billed with hospice. Okay, he works that out with hospice, but you don't have to get rid of your primary physician for your illness.
Speaker 3:Hmm, well, that's good. Well, that's good to know and I know you've already answered the next one about they don't stay with you 24 seven, but there's, you can contact someone.
Speaker 4:That's right. Um, when end of life is is pretty imminent and we'll say like the last couple weeks, then that nurse is probably going to say it's time for us to come daily. Okay, you need the support and we need to have hands on and eyes on, and so you're going to see them daily. But if you call and say I would like a visit, they're going to always come. That's their responsibility. That's what they're going to do. Now.
Speaker 4:Sometimes, yes, that nurse is going to be right there when that patient takes that final breath, because they came and things went down fast or they knew they were going to go and they're going to stay. They're going to try to stay. They were going to go and they're going to stay, they're going to try to stay. You know, I've never I've never personally experienced myself or any nurses I've worked with, that said, well, he's going to die in the next hour or so and call us when it happens. They just okay, so, but what they don't do is that last week they're not going to be providing you nurses around the clock. No, but by then you're going to be so comfortable with doing the care. Hopefully you know if they've been with the team for a while. That's another reason don't hold referral off so long.
Speaker 3:Yeah, now I two things real quick curry before you do yours. What if? What if the person say had three back surgeries and can't like lift or move or do any of that and they're not capable of doing what's needed? Will hospice have somebody come every day?
Speaker 2:then, if that's the case, they might get you a lift.
Speaker 4:Maybe, I don't know they provide a, a Hoyer lift. They provide equipment-wise the things that are paid for by equipment-wise Hospital bed, air mattress or pressure-reducing mattress. They will provide side rails, bedside commodes, wheelchairs, walkers, oxygen. You know, hoyer lift, all of those things can be provided by that hospital at no charge to the. They do have a formulary that's put out by the government. So you know, there's some things you're not going to get. You're not going to get, you're not going to get a ten thousand dollar pressure bed no, dang it, I know I know but but they have to, so they have to.
Speaker 4:There's some things that they have to say no, I can't provide, but those are generally the things that all hospices, I think in the united states, provide and, you know, hospice around the world. It's going to be different, but yeah, um, yeah, um. And the last question, this around the world, it's going to be different.
Speaker 3:But yeah, yeah, um, and the last question, this, this one goes back because I said that people were still sending me questions after I sent you what we were going to talk about. This one kind of took me by surprise. Um, somebody asked, when you ask clarifying questions, if the diagnosis qualifies. Her husband was discharged because he was gaining weight. Just because he was gaining weight.
Speaker 4:Okay. Well, now I want to remind you all that I'm not diagnosing either. Okay, I can't cure you, treat you or any of those things I'm going to talk to you from my experience, things I'm going to talk to you from my experience. They could not and should not have discharged before that six-month period. Okay, at the end of that six-month period, yes, that patient has to be recertified. So that means they have to have that same assessment Now. They have to have that same assessment Now.
Speaker 4:Myself, when I had any patient that had Alzheimer's, dementia, lewy bodies, I knew that there were some things that could keep that patient in, even if we had some weight gain. Because, guys, maybe when we signed them up they'd lost weight because they'd been sick. So they're going to naturally gain weight when you improve the quality of their life. So what we do is we measure circumferences arms, legs, chest we look at daily intake, we look at how much fluids they can take. Are they having some silent aspiration? How many falls have they had recently?
Speaker 4:And so what gets that patient recertified is painting a really good picture of what's truly going on with that patient, with that patient. So now, if the patient Really did, if they gained 20 pounds and it wasn't fluid and they, their vocabulary, increased. They were holding their head up. You know they weren't starting to hump over Because you know, and I, sometimes they start losing that ability To hold your neck up or your. If those things are all of a sudden improving, maybe they are going to be e-certified. Does that mean they can't come back to hospice? Nope, they can come back anytime they want.
Speaker 3:So is it every six months? They get evaluated, re-evaluated, no matter what.
Speaker 4:Yes, yes, every six months get evaluated, re-evaluated, no matter what.
Speaker 3:Yes, they okay. Yes, every six months, okay, okay, so but that's called a certification period but I'm glad I asked that question because now that the girl who um asked that question will know to have them doing that measuring of body parts to you bet Measure, you know, because just because someone has gained some weight does not mean they didn't lose muscle mass.
Speaker 3:I was just going to say that because my husband's gone from 220 down to 180, but he snacks all the time and I don't have the heart now to tell him not to snack. I'm like you eat what you want, so he's got a little belly, but I'm telling you he snacks all the time and I don't have the heart now to tell him not to snack. I'm like you eat what you want.
Speaker 4:So he's got a little belly, but I'm telling you he has no muscle, like he can't even lift that way he lost was his muscle mass and that's that's what moves them to frailty and any patient that moves over the line of frail. Frailty means that generally you have a couple incidents in a disease process that declines them. But once they hit a frailty, there's been so many studies done, and they did some studies in nursing homes and they found that women who get a second urinary tract infection in a nursing home generally cross over the frailty line and they will always be gone in six months. Same thing with fractured hips. And so you have to look, you have to do those circumference meds, you have to look at. Okay, so they're eating, but is it because the spouse is feeding them? Can they no longer feed themselves? You know, you got to paint the picture and a good nurse will paint the picture.
Speaker 3:We're going to keep asking Vandy some more questions, especially asking her about the biggest challenges and misconceptions about hospice. So we knew this was going to be at least a two-parter. It's going to be a three-parter. Sorry, no, we knew it, curry, and I knew it because, vandy, we try to keep them around 30, 35 minutes, so it's perfectly fine that it's long because this is such an important topic. So stay tuned everyone. We'll be back with part three in a minute.