The Caregiver Cup Podcast
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The Caregiver Cup Podcast
Caring For Your Loved One In Hospice With Guest, Helen Bauer
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If you're caring for a loved one in their end of life and hospice or you're approaching it soon, this episode is going to be valuable.
Today’s guest, Helen Bauer from the Heart of Hospice podcast shares
- What’s the difference between Palliative Care vs Hospice?
- What is end of life care?
- Your rights to choose an agency.
- Levels of hospice care
- The core team, services / discipline, caregiver system and the family
- What hospice does to help the family?
And then some really good advice for caregivers.
- Caregiver empowerment - advice for caregivers
- What’s covered under Medicare hospice benefits?
- Keys to making a caregiver system work
- Self-care and self-awareness for the caregiver during this time. Mind, body and spirit
- Caregiver behaviors and roles during this time
- View of death
Check out all Helen and The Heart of Hospice has to office at
- website link. The Heart of Hospice
- podcast link. The Heart of Hospice Podcast
Well, hello there, and welcome to another episode of the Caregiver Cup Podcast. It's Kathy here. I have a remarkable episode for you today. If you are caring for a loved one in their end of life or in hospice or you're approaching it soon, this episode is so, it's going to be so valuable for you. But even if you're not there yet, you will most likely have to experience it sometime or know of somebody that's going through hospice right now. Today's guest is Helen Bauer. She is a nurse for over 30 years, specializing in hospice and end-of-life care for over 10 years. She's a certified hospice and palliative registered nurse with experience in patient care, nursing management, quality, and compliance. Her passion for advocacy, which you're going to be able to hear at the end of life, can be heard on her podcast called The Heart of Hospice, which talks about hospice philosophy, how to get the most from your hospice experience, and advanced care planning. Over the years, Helen's helped hundreds of families navigate their hospice journey by providing support, education, and encouragement. So when she reached out to me, I knew this could have to be an episode for us on the Caregiver Cup podcast. And I knew she would be a great resource for you. So in this episode, you're gonna we're gonna spend time. Helen and I have really great conversation, but I'm asking her questions like what's the difference between palliative care versus hospice care? What is end-of-life care? Because it's so confusing. She talks about rights to choose, you have the right to choose an agency if you have that option when you're in hospice. She talks about the levels of hospice care. I asked her, what does hospice do? And she described the different team, the core team, the services, the discipline. She talked about the caregiver system and the family support and what the families needed to do. And then we get, then she gave really some good advice for caregivers. She talked about, I love how she said caregiver empowerment, which was which she gave advice for us as caregivers. She talks about what is covered under the Medicare hospice benefits, just briefly, but it really gets you to think about it. One of my favorite pieces, though, is she talks about the keys to making a caregiver system work in hospice or an end-of-life care. And she talks about self-care and self-awareness for us or for you and I as caregivers during this time. And she really focuses on mind and body and spirit. And she also talks about our caregiver behaviors and roles during this time and her view of death. So you're gonna have to sit back, put your seatbelt on, and take it all in and go for this ride with us. But also, I want you at the end or during the episode, you can check out the show notes where Helen's business is called The Heart of Hospice. There's a link there, the link to her website, a link to her podcast episode. She has been podcasting for over six years, which I think is great because you're going to be able to hear all of the experience she has and knowledge that she has. And then when you go to her website, there's some great resources like Hospice 101, and she's got some great blogs. And so without further ado, I want to go ahead and introduce you to Helen Bauer and let you hear about the episode that we're calling Hospice or End of Life Care and what this all means. Enjoy the episode today, my friend. I wanted to take a quick pause here right before the episode begins and remind you that registration is now open for the Caregiver Cup Circle. This community of caregivers, women caregivers, we gather together and share experiences twice per month. We offer support and lift each other up. When you join the Caregiver Cup Circle, you'll be able to bring your struggles, connect with other caregivers, and leave each meeting feeling like you're not alone and with hope. So you heard that we meet twice per month via Zoom, and we start right away on Thursday, February 9th. In addition to meeting twice per month, you're also invited to a caregiver workshop that I facilitate on a we tackle a caregiver topic and find which can find new ways, teach us new skills, techniques, anything that can help us release our stress. Being a caregiver can be downright lonely, stressful, and overwhelming. And that's why finding a community was one of the best and first decisions I made as a caregiver. And I really want that for you. So check out the show notes. The link will be there. Also, if you want to, you can go right out to KathyLvan.com forward slash caregiver circle. And that's Kathy with a C. And join us in February. You'll be glad that you did. So let's go now and jump into today's episode. Helen, I'm gonna stop talking right now, and I'm going to go ahead and let you introduce yourself and tell us all about the heart of hospice.
SPEAKER_00Well, thank you so much. I'm excited to talk with you. I have to tell you that I love it that you were able to say hospice without whispering it. Because so many people say, Oh, you know, they've sent her to hospice. And it's because, you know, it's a terrible thing. We have hushed tones. I'm I'm an advocate for let's hit it on the head and let's call it what it is. So I I've been in community-based care for 30 years, been a nurse for over 30 years, and have been working in hospice for 13 years. Um, stumbled into it just looking for a full-time job and fell in love with it. And I've been in it ever since. Um, I've been doing the podcast, the Heart of Hospice Podcast, for the last six years. Um, amazing work, connecting me with so many healthcare professionals that are working in end-of-life care and caregivers that are also working in end-of-life caregiving because that's the role that their personal relationships have placed them in. So I try to provide education and support and encouragement for both types of caregivers, whether they're unpaid or paid. And um, it it seems like a natural fit. You know, I've just moved into it in my career and I love doing this.
SPEAKER_02Yeah. And you all, when we Helen and I connected about at the end of December, I believe, and we had talked about this, and I started addressing, oh my gosh, she was educating me, and I've gone through it, like I said, two times now, and I didn't even know some of the things that were available or thing decisions I could have made. I was just kind of blown away at the fact that you just allow the services to happen without even really understanding them. And so thank you, Helen. Um, let's start out with the the question that most people don't know is when when my mom was um having issues with her lung cancer, and they decided she decided she didn't want any more treatment, she just didn't want to go through anything more. They had said, we're gonna bring in palliative care. And then it turned in like 10 minutes when the nurses came in, they moved her right into hospice care. And I had no idea what any of this meant. So, can you tell us what end-of-care life is, what hospice means, and palliative care means? Because I think that's such an important basic thing to understand.
SPEAKER_00I think it is, and I think it's a confusing topic because palliative care is a specialty. It is a specialty, is a new kid on the block when it comes to health care. And a lot of people don't know the difference between palliative care, home health, and hospice. So the way I try to explain it is palliative care is a type of comfort care where you can still and you still do receive aggressive treatment or treatment, curative treatment for your condition or conditions. Hospice includes palliative care, but not the treatment part. So palliation is about comfort, managing symptoms, um, managing psychosocial symptoms, supporting the family. All of that can be done inside palliative care, but it doesn't necessarily include end of life. So a good way to remember it so you can separate the two is all of hospice includes palliative care, but not all palliative care includes hospice.
unknownOkay.
SPEAKER_00Yeah. So under palliative care, if you have if you're being treated by a palliative care doctor and a palliative care key team, you can still receive treatment.
unknownOkay.
SPEAKER_00Yes.
unknownOkay.
SPEAKER_00So hospice is that palliation, but without the treatment at the same time. It it is pretty confusing, I think, for a lot of people.
SPEAKER_02Yeah, it is. It is. And yeah, when they came in, and one of the things that I experienced is when they came in, um, they determined that my mom was on the hospice side. So does the hospice side then mean end of life care? Then hospice means that they're they're no longer doing the pal. I I must be saying palliative wrong, then palliative, it must be.
SPEAKER_00Palliative, palliative. Okay. I don't know. People say it different ways. Okay, so it's like you eat a potato. Yes, and if you say it in the south, we we kind of draw everything so it all works out.
SPEAKER_02Yeah. So when my mom was then in hospice care, it that probably meant she wasn't re receiving much palliative care uh services, or she might she wasn't receiving much therapy there at all. So does that am I getting it right? Because I'm confused a little bit.
SPEAKER_00No, so your mom was still receiving palliative care as part of hospice. Absolutely. If you if you think of palliative care, palliation is about comfort management, symptom management. So anything having to do with pain, shortness of breath, anxiety, all those symptoms, we palliate those symptoms, right? So hospice includes all of that, but that patient has a limited life expectancy.
SPEAKER_02Okay.
SPEAKER_00So that's where the difference comes in, and they're not seeking treatment.
SPEAKER_02Okay. Now you had said because I never even seeked the agency or the services. The doctor automatically recommended, and we they brought in or they called in their hospice services or their nursing services. I was, this is just Kathy, maybe probably not even knowledgeable on it. I didn't even know I could have looked at different agencies. So that was the shocking piece to me. I just assume whoever came was the person that had to come.
SPEAKER_00Right, right. I think a lot of people do that. Um, sometimes it's easy for that to happen because a lot of people have um long-term relationships and good relationships with their doctor, with the primary physician. So if Dr. So-and-so says, well, A1 hospice agency is the one he typically uses, or he serves as their medical director and you want to keep that connection with him, the family or the patient will say, Yes, that's great. The other flip side of that is when a family and a patient are told, we think this is the time for you to consider hospice, there's so many emotions and there's a lot of mental overwhelm. And if the patient has been acutely ill, or if this is something that's happened very suddenly, man, there's so much coming at you. So having somebody sort of spoon-feed that decision to you and hand it and say, here, this is what we're going to do, sometimes that's a little bit easier to let that decision be made for you. But but people always have the right to choose. And if a doctor says, Well, you know, I I work with this particular agency, um, I've made referrals to them. You can ask for other recommendations. It's perfectly understandable for someone to hospice shop and compare a little bit. And I think that's a good choice if you have the time. A lot of people don't have the luxury or the bandwidth to do that. You know, mental energy, um, physical energy, or because of the patient's status, depending on where they are. I mean, we have a lot of hospice patients that come to us and they are already actively dying. Families don't have a lot of time to window shop and see what the best fit is for an agency. So it's important for people to know they have the right to choose. But if there are healthcare professionals that can help them coordinate that, that's okay too.
SPEAKER_02Okay. Before I get into tips on how to work with hospice, um, I'm can I want to ask you a question because it just sprung up something else. My husband, his dad was actively dying in the hospital. And hospice was in the hospital. Now I know there's hospice facilities, and then hospice comes in the hole. That's even very different for me. Is there an explanation for that?
SPEAKER_00Yes. So there are different levels of care inside the hospice benefit. Most of our care is provided under what we call routine home care, which is provided wherever the patient lives, in the home, an assisted living, even in a nursing home. Um, but then when we have a patient that's in a crisis that can't be managed at home, or they move into a crisis while they're in the hospital, we hospice can be called in to manage the care there. It's called general inpatient. And really, it's about billing and how many, how often visits are made. It's typically something that families don't even have to deal with because it's all the responsibility of the hospice agency. But we can go to the hospital if a doctor says, you know, this patient's not going to get any better. We're managing the pain as a crisis or shortness of breath as a crisis here in the hospital. But I think you could use the support of hospice. We can go into the hospital. We would not transport the patient home because it's unconscionable to think that for the convenience of the hospice or to reduce the cost of what's going on, you would take an actively dying person and put them into an ambulance with the risk that they would die en route, which is a horrible thing to happen. Um, so we can provide hospice in the hospital, absolutely.
SPEAKER_02Yeah, I just thought about that because my husband's dad um was in the nursing home and he had a situation where he had to be transported to the hospital. And at that point, they made made the decision that it was just days. And at that point, they brought in hospice. But I see I I paid, and this is kind of going into the next piece. I just wanted to, I think hospice was there to just keep us educated almost and keep the charts updated as well. So, and we'll get into that in a little bit. But so now that let's say we have one of our listeners is there in hospice right now, or they they're getting close to making the decision for their loved ones' end of life, and that's their next alternative. What are things? Can you kind of explain the basics? I see on your website you have hospice 101, and that will be a great piece for everybody to go ahead and look at, because that helped me considerably. But what does hospice actually do? And in a high overview kind of perspective? I kind of saw it, but I think it's important for us to understand what they can do and maybe the things that they they don't do or they ask for other support people to do. So sure.
SPEAKER_00So hospice care is provided by a team of professionals, clinicians that each have a different skill set. So combined together to take care of a patient and the caregiver, it's this incredibly well-rounded system when it's done well. So you have a nurse, you have a social worker, you have a chaplain or spiritual counselor, as we call them, and you have a physician. That's what we call the core team. And the nurse, the social worker, and the chaplain will make visits in the home. The patient does have to have that limited life expectancy of six months or less, and that is up to a physician to decide. Once that decision is made and the patient or the decision maker for the patient decides, yes, we want to utilize hospice care, then that core team gets started. They make those initial visits. We have other team members that work with patients and families as well, including um bereavement coordinators, um, grief counselors, uh, we have volunteers, we have hospice aides, like a nurse's aide that provides personal care. Um and each one of those services is a little bit of um a la carte because the family can pick and choose which disciplines they want to make visits. However, the nurse is a non-negotiable thing because there are regulatory assessments that have to be made for us to be able to bill. So the family can really utilize as many or as few of those disciplines as they want to, but the system really works best when they use everybody.
SPEAKER_02Yeah, I experienced the nurse, the social worker, and the chaplain. So I experienced all of those, I think, because my sister was a CNA and she had that experience. She no longer was, but she had had that experience. We didn't utilize any of the aides or volunteers. But if I think if I've only experienced a hospice for a month with my mom, but I think if it went on for longer, I could see the red flag coming up or the white flag coming up saying, uh, we need some help with, you know, other things.
SPEAKER_00Oh, sure. Sure.
SPEAKER_02Definitely.
SPEAKER_00Yeah. And that's that's why the social workers are there because half of taking care of a hospice patient is taking care of that caregiving system. Because hospice never takes the place of a family. That's a really important thing for people to know. That was one of the first things I learned. Social worker taught me that when I became a hospice nurse. Hospice never takes the place of family. And there are two lessons behind that. First of all, we want people to know we don't take your spot. You know, you are there, you have a special role, you have knowledge, a lifetime of knowledge with your loved one that we don't have. We we're not there to take your place. And the second thing is it's also to let people know that because of the way hospices run in this country, we are not going to come in and be there in your home for an extended number of hours, even when your loved one begins to die, unless there's a crisis.
SPEAKER_02Yeah. It's more, yeah, it's more like that nursing visit, that that piece. I was surprised in this, and maybe you can tell, tell us some of the the positive things that make life easier for the family. I thought, and I guess because it's so fresh in my mind, simple things like we, I mean, and I don't know if this is normal or I'm I'm we crossed the line, but they educated us on all of the medications that had, because my mom was on morphine, and then I don't know what the medicine was that stopped the gurgling in the throat and all that kind of stuff. They educated us on all the medications. So we had a training session at my mom's kitchen table. She was sitting there. Um, but when it got to be more of the end of life, we didn't have to go when we needed a refill. We didn't have to go out. They made things so Simple, they said, okay, we're going to be the it'll be dropped off this afternoon between the hours of three and five. It was so nice that we didn't have to do that. They brought up things about here's what we would suggest. My mom refused the hospital bed, but we had a nice bed. But they they looked at the equipment and different things that we would make our life easier and and would you know would offer to drop things off. So can you help us understand if if a caregiver saying, nope, I don't want anybody in my home, or the loved one says, I know I don't want anybody in my home, can you help? Um I'm for lack of a term, sell it to us to say, What's you know, it is a service, but it is something that's going to make your life so much easier or helpful when it comes to caring for your loved one?
SPEAKER_00Well, I guess the first thing I would say is to be resistant to having all of that invasion into your home is totally understandable. We totally get it. This is not just your your home and your living space, it's your personal life. It's your bedroom, your bathroom, your living room, where most people, most people have only experienced healthcare in a facility, a clinical setting. And this is inviting all of this into your living space. The other thing I would would let people know is that we also understand we are coming into your personal life at the most vulnerable, intense time you could possibly be experiencing in your relationship with the person you're caring for. And if we do it right, you will be able to put your head on the pillow when the whole situation is over, after your loved one has died and said, You'll be able to say, I don't have any regrets. I I did the best I could with the information I had at the time. I made the best decisions I could, and it was the right thing to do.
SPEAKER_02Yeah, and it it gives it makes me feel warm and fuzzy. Okay, I'm still grieving my mom, but my mom was very resistant. Um, and very she was just this feisty, sassy little lady, so just skinny little thing. And she did not want extra equipment in her home, and she did not want to take any more of her um medications to try to help with her cancer and and you know, all of that kind of stuff. And what they did for my mom, the nurse did for my mom, is I don't know if they have this magical social intuition or whatever it would be. They kept saying, Janet, you know what? We're all working for you, and you are the boss, you get to decide what you want to do now. If you don't want to go ahead and eat your vegetables, nobody's gonna tell you you have to eat your vegetables. If you don't want to go ahead and you know, with the exception that what she said, with the exception, if if you're gonna be in danger, we have to go ahead and talk to you. But you know, but it it made it took my mom from being defensive to warming up to this lady, you know, and you know, eventually she knew how to get under my mom's heart and showed pictures of her kids and that kind of thing. And so my mom really looked forward to her visit and her assessment. But yeah, I can't even imagine Helen going into somebody that's just totally resistant when it comes to a nurse coming into their home, you know.
SPEAKER_00Oh, sure. I think a lot of people feel like their rights are being taken away from them. Absolutely. Um, you know, like your mom didn't want a hospital bed. People don't want their home turned into a hospital room. Um, it just makes you feel like a patient, like you're not sick enough already, right? There are plenty of reminders. I think it's really important to empower patients to make their own decisions. You don't want morphine, that's fine with us. We understand. If you want me to, I'll have it here and teach you guys how to use it if there's a crisis, but you don't ever have to open it if you don't feel comfortable with it and you don't think you need it. Ever. Entirely your choice. Um, and I think caregivers need to have that kind of empowerment as well. We're not here to take over your decision making. We're not here to take over your caregiving role. You want to spend all your time at the bedside, you want to be the one to provide all that care. We will support you in that decision. Absolutely.
SPEAKER_02Good. Yeah, because I think that was another thing that you and I had talked about is being a caregiver in our role. It, and I think that was a great tip to hear from you is what other tips do you have for being a caregiver or that advocate during this end of lifetime?
SPEAKER_00First thing I would say is gather that caregiving village around you. Gather those people who are offering people that you attend church with if you have a community of faith, you know, people from your book club, from the Y, people you work out with, relatives, neighbors, anybody like that that has offered to help. Gather those people around you. If even if they're remote, say they live, you have a cousin that lives 18 hours away, but they would offer to support you with phone calls or emails or remote banking or making phone calls, take advantage of that and build a caregiving village. Because running a one-person nursing facility is exhausting. It is exhausting. Caregiving and advocacy is exhausting. There are all these little what I call micro decisions. Should we get up today? Should we not get up today? Should I call the nurse about that? Should we go ahead and give morphine? Should I turn him, even though he's he's actively dying? All these little micro decisions that become very exhausting. Forget about mowing the yard and and washing the dog. You know, should I take the time to brush my teeth because I really need that that five minutes to do something else for the person I'm caring for? So gathering that village is super important.
SPEAKER_02What was really eye-opening to me in both my dad's and my mom's situation is and you think that, you know, by by looking at them, it's just a matter of time. And some people, it may be just a matter of hours, versus both of my parents were comatose and not verbally or physically alert at all. And it was weeks before they passed. And in my mind, as a caregiver, I thought, well, in those urgent days where they were still awake and restless, and we were trying to care for them, I'm like, I can live without the sleep, I can, I can make it. And then when you get to the point where you're in your, you know, ninth day, 18th day, and you're like, you don't even know what you're doing anymore. Your advice is so beneficial because you need to find ways to get a good night's sleep. You absolutely do. Yeah, and finding that extra, thank goodness I have two other siblings. I can't even even imagine if somebody is by themselves. And at that point, I think when when I think the hospice nurse and the social worker were seeing that we were becoming exhausted, they would quietly and you know, appropriately say, How are you doing? Are you getting enough sleep? What are you eating? You know, and so they're they were kind of giving us suggestions along the way.
SPEAKER_00Right, right. And that's exactly what we're doing. We're watching that caregiving unit, you know, those caregivers or that primary caregiver, especially, because there are people across the United States who are doing solo caregiving because there just isn't anyone else. And it's it's such a touch and tough job, but watching out for them and making sure they're not burning themselves out because there are caregivers who get sick during this period of time when they have such an intense caregiving job, and some who experience significant health events and die during a caregiving journey. And that's a whole that's a whole nother podcast, right? But it's super important for the caregiver to be able to accept the help of not just the caregiving village, but the hospice team as well. There are respite services that hospice is required to provide up to five days in a facility. And it is not for any crisis with the patient. It's all about the crisis with the caregiving system. All within the caregiving system, all about them, even if they need just to have a break for a few days, if they want to go to a wedding, if they need to have some sort of outpatient procedure, or they just need some days off. Up to five days, hospice can provide that. And there is no cost to the patient or the family for that particular service under the Medicare benefit in the US.
SPEAKER_02Yeah, that that is a good piece because I think when we had talked um in December, you had said hospice provides care for the caregiver too. And it is kind of you said 50-50. Can you explain that? Is that is that truly then 50% of care for the patient and 50% for the caregiver? Is that kind of what you're saying?
SPEAKER_00I think so. I absolutely do, because you have a team of people that are designed to collect these skills to look at the psychosocial. We're looking at the safety of the patient. So when we look at safety, we're looking at not just physical safety, we're looking at caregiving safety. Is the care being provided, are they being neglected? Is this caregiver capable mentally of managing all the medications if the care were to get complicated? You know, if the meds were to get complicated. So we look at all of that. Um, are they able to keep up with the bills inside the caregiving roles? You know, there's so many aspects of caregiving that all of that affects our patient. So, how could we not take care of the caregiver at the same time? The team is structured to be able to do that.
SPEAKER_02I laugh. I'm smiling because when my brother and my sister and I took care of my dad, it just and I don't know if it does all the time, but it happened naturally. My sister had the CNA knowledge, and I was just blown away how she could move and reposition the body and how she could help with the bathing and the gait belt and all of that kind of stuff. I would be a mess, I wouldn't know how to do that. But I my skill set was like the organization and the managing and the advocacy piece. I was out there journaling everything and creating a journal of what dad had said and everything like that. And my brother was that physical support and that emotional support, and he was the one running to the grocery store and making sure we had meals, and it it naturally happened. And even when my mom passed, we're like, okay, are we gonna use our same roles again? But not everybody has that. But the reason I'm bringing this up is because we use our professional and our personal skill sets, and you start seeing some of the things that would bubble up. I I agree now, I've learned a lot from my sister and from being in the experiences, but I don't know fully how to handle all the skill sets needed. So, what can you say about people about how they can transfer their professional skills or their talents in a caregiving way to make it feel good in those hard times?
SPEAKER_00I think you and your siblings really just naturally did that, which is quite a gift to be able to understand, okay, this is my skill set and my strength, so I'm going to go ahead with this. And recognizing, well, this is my brother's strength, so he can do this, not I need to tell him he needs to do another task. I think a lot of caregiving groups don't have that. Don't have that. I actually have uh uh two siblings, myself, a brother and a sister. And we do the same thing for my mom. We naturally know where our abilities are and what we are able to do and what we are willing to do. And I think that self-awareness has helped us just naturally divide the tasks out. And when we need to communicate about something that's sort of falling in between, we communicate. I think that's one of the biggest keys to making a caregiving system work, is to be able to communicate and to be self-aware of what your skills are and what you're willing to bring to the table. I think that's hard to do sometimes because people have different caregiving styles, is what I've seen. Um, some people are very hands-on, very, I don't want to say touchy-feely because that sort of devalues it, but people that are more emotionally engaged, where other people are more, I want to do the banking and the running the errands and I'll mow the yard, I'll wash the car, things like that, a little more emotionally disconnected, but it's where they sit comfortably in the caregiving system. And all of those roles are very vital to the care of the patient.
unknownYeah.
SPEAKER_02Gosh, I wish there was a way, you know, and it never works out that way from a hospice perspective. Usually you'd you jump in and you have to just kind of figure it out. But what then be magical start to say, okay, mom's going to start hospice now. Here are all the things we have to do. How are we going to handle it all?
SPEAKER_00Right. Like you had a big checklist and you say, okay, put my name by this one, put my name. And you can do that. You have to have some organization. And I think you have to have a level of awareness of what you're headed into. But most people, most people, let's face it, we're flying by the seat of our pants. We're already exhausted, worried about money, um, grieving on top of it, and and navigating a healthcare system, I think, that can be pretty confusing.
unknownYeah.
SPEAKER_02Yeah. Yeah. And then put on the top of that, most people are managing other things, right? Uh, some of people are still working their job or their career. Sure. Uh, they may have siblings or children at home that they're taking care of. Uh, for me, when when I first was a caregiver, my dad was diagnosed with stage four pancreatic cancer. Two weeks later, my husband was diagnosed with stage four lymphoma. And so during my dad's end of life, my husband was in chemotherapy. And so you felt like, okay, how do you do both things at the same time? And so, do you have do you have thoughts on that?
SPEAKER_00Um, as far as I do, I'm laughing a little bit because the kind of situation that you're you're telling me you found yourself in is crushing for a caregiver. Crushing. Um, most people would be trying to work at the same time. Maybe you had a full-time job at the same time. And and you get this advice like, um, well, you know, do you need some counseling? And your first thought is, I haven't shaked my legs in three months. Counseling, you know, I haven't been to the dentist in a year. You know, it I think, I think self-awareness inside those situations is so important because self-care is not about bubble baths and manicures and pedicures. It's about no, it's not. But I think in the past, I think before the pandemic, we used to think that. But I think now we've we've come to realize it's not about thriving, it's about surviving. What do I need to do to get through today? Yeah, forget that massage thing. I don't have time to even call and make an appointment. But I can spend five minutes sitting on the edge of the bed doing a dream deep breathing exercises. It doesn't cost me anything, I don't even have to brush my hair. But I think that self-awareness of knowing what I need and then treating the three parts of yourself equally, knowing that the other two follows where the first one goes mind, body, and spirit.
unknownYeah.
SPEAKER_00Yeah.
SPEAKER_02Yeah. I because I think, yeah, for for me and my brother and sister, it was my husband is like the the he was like the runner for us um during this time. And it was like, just make sure we stay hydrated and make sure we have we started ordering meals in, and then that just became too much because it was like we were we were just eating so bad. And you know, what can we do? And then people started offering, and I'm like, bring us a crock pot meal, just bring us something, you know, because that was one less thing that you could think you had to think about. Sure, yeah, I it was something for you for Helen for me, it was like, okay, I had to go check the mail every day, you know. I didn't have to, but that was my way. And my mom was in her apartment building, and I would walk the long way and pick up the mail, and then I would once in a while walk around the building and just breathe in the fresh air, realizing because you you get to the point where it's like you don't see any other world but the world you're in. Sure. And you and you're you walk outside and you're like, oh my gosh, people are driving around going to work, and my mom is dying. Right. This isn't fair, you know, and so you start your mind starts messing with you.
SPEAKER_00And that's I I think it's really good to get outside of that, those caregiving walls for a few minutes. What I have found with people is as caregivers, especially for someone who's done most of the caregiving, hands-on caregiving themselves, they begin to very to identify a great deal with the path that the patient is on. Isolation, right? Um grief, fear, uh, limited relationships and interactions. And you have to sit up and realize where he or she is going, I am not going. I can't go where they are going. So I need to take care of myself differently. I can't go where they are going. And it's it's a realization inside the grief journey that that separation is going to happen, which is which is so hard. It's just another another source of grief to realize the separation's coming, not just the death, but the separation afterwards. But to be aware that I need to take care of myself differently because my path is going to separate, and it is different from what my loved one is doing.
SPEAKER_02Yeah, that's that's really amazing too, to think about that way. And I wish I would have had that thought because the whole time I'm there, those those last few days, it's like, mom, you can let go. You were just hoping, you were hoping, and part of you felt guilty for saying, You gotta, you gotta go, we're okay. And we would try different things, we would leave the room and eat dinner out of the bedroom, or you know, we would sit with my mom and play music or whatever it would be. And then all of that time that you're hoping that she will let go because you no longer want to see her like that, then when she does, you you wish it didn't happen. Sure. That fight back and forth with your head.
SPEAKER_00Well, and and you have this thinking did I somehow make it go faster? Yeah. Did I did I somehow push her over the edge to the death? When of course we have no control over it, right? Her her body's gonna do what it naturally does because the human body knows how to shut itself off. But it goes from you can go ahead and go, we're gonna be okay, to why hasn't she gone yet? And then would she just go already?
SPEAKER_02Yeah, or you're angry because she didn't go already. We I we kept telling them you're the energizer bunny, you don't have to be the energizer bunny anymore.
SPEAKER_00Right. That that rally thing, oh my God, that's exhausting for caregivers. Yeah, you know, uh um that happened to me in My personal caregiving journey with a friend of mine, she was acutely ill. Um, she was placed into a hospice facility, a GIP facility, general inpatient. And we really thought she was going to die, and she rallied. And I was like, Yes, that's amazing. She's gonna live. We've got more time with her. And then I thought, holy crap, she can't stay here. She's rallying, she's stabilized. Where is she gonna live? I have to create a caregiving system. But you know, it was this horrible, and then I felt bad because I was a little irritated that she didn't die because I knew how to handle that.
SPEAKER_02Right.
SPEAKER_00And then when it didn't happen, I'm like, well, this is messed up. You know, how do I figure this out from here? And I had to regroup. But I think all of those emotions, it's so messy, it's very messy.
SPEAKER_02I think that's the big thing. It's messy, and there's so many unknowns. And if you're the type of person that wants to know steps or you want to understand everything, the human body is so unbelievably different and remarkable. And I just it, yeah, it yeah, it it is. Uh, I'm glad I got to experience it and I go, I'm glad I'm understanding it more, but it still doesn't make it any easier. So how do you how do you handle? I'm gonna, I'm just a couple more questions that I think my listeners would would have is how do you handle uh when the relationships or I'm gonna do one one ahead of this one first. How do you handle the caregiver that does not want to leave the side because they don't want to they don't want to miss their last holding of hands or their last breath, or yeah, can't pry them away. The reason I'm saying this is my sister was that way with my mom. She she, to the point where we had to physically say, You're getting sick, you have to go and take a nap. You can't be here 24-7 all the time.
SPEAKER_00Right. Um, I I've seen this a lot. And I think as a healthcare provider, as a hospice nurse, a lot of times I was judgmental of that. You know, that's not practical. They're overly engaged, you know, why doesn't she just back out and and let somebody step in for a while? You know, why is this caregiver hovering over my shoulder when I'm doing my assessment and providing care? Why don't they just step out and take a few minutes for themselves? Right. Right. Um, but what I came to realize and respect is that caregiver is a caregiver all the time, 24-7. And I think every moment for them, even doing the the maintenance, you know, the work part of the caregiving, the physical care, I think that was very precious to a caregiver. And to know that there's a finite number of moments that you have with that loved one. And then to be told, well, just go take a nap, you know, you know, casually take yourself away. For a lot of people, they cannot disconnect like that.
SPEAKER_02Right. Right.
SPEAKER_00And I've offered to do things and been told, no, I'll do it by a caregiver that I know has not slept and hasn't sat down to eat a meal in a week and being told no, I'll do that. I think I've seen it especially with partners that have been together for a really long time. And I think it's a lot of I told him I would walk this with him. Um, I told her I would walk her home.
SPEAKER_01Yeah.
SPEAKER_00And so that's part of it. I've even had a son that wanted to, it's one of the first deaths in hospice that I was at as a nurse, and the son helped load the mother's body onto the gurney when the funeral home came, and then walked, escorted her basically.
SPEAKER_02I did my brother did that, yeah. Both of my parents, yeah.
SPEAKER_00Yeah, and and what he said to me, he said, I've done this, I've been with her for this whole thing. I wouldn't leave her now. It's my job to do this last walk right to the edge. And for him, it was meaningful. So, so I think it's important to respect the caregiver that doesn't want to step away, right? Not to judge them for that. Now, when a caregiver is beginning to break down or to beginning to get sick, um I think there needs to be some gentle direct communication because a caregiver that has become sick and ineffective has basically become another patient. Right? And you can't work the caregiving system and have one terminally ill patient with that type of caregiver. So there has to be some some tough love, some direct communication that's very kind. And there also should be some support from the social worker. How can we help you? What kind of support do you need a respite stay for your loved one? Do we need to get a volunteer in here? Do we need to structure some, um, help you find some staffing to put somebody here at the bedside? You can sleep on the couch here in the same room if that makes you feel better so that you don't feel disconnected from what's happening. But let's take care of you. Let's take care of you. And then you have to have some level of acceptance that this person is in the sprint at the very end of the race. And we are pacers who run alongside you till you finish. But it's your job to get across the finish line.
SPEAKER_02Yeah. And my siblings and I had discussion, and my sister's name is Connie, and she we we got her to sleep alongside of my mom for a while. Uh, that was really good. And then we had a really good discussion in the last few days to say one of us is not going to be by mom's side when she does pass. One of us might be in the shower, one of us might be out eating dinner, and it's going to be absolutely okay. You know, and but not everybody can accept that. I know when my my dad had passed, my mom stayed with my dad until the bitter end. And she even told him, I'm gonna go take a shower. So you stay here yet until I get done with my shower. And what was really funny, Helen, is he passed a half hour when she got back into the room after a shower, he passed a half hour later.
SPEAKER_00So he did what she asked. It was just amazing. That's so sweet. That is so sweet.
SPEAKER_02There's so many wonderful, wonderful stories that we can have, you know, and that kind of thing. Now, yeah, go ahead.
SPEAKER_00I just think a a lot of this is the way I view death. Death is not a spectator sport, not everybody wants to be to die with people with them. I've seen that a lot with um adult men whose parents are still living to be left alone, let your mother go home for a while, and then let that release come. I've seen that. I've seen that I just think that some people have that personality trait that that is a very private event for them. And then some of it is biological timing. The hospice nurse in me has to look at the practical part of it at times. The pace of the body's system shutdown, it is what it is. The human body is designed to do it, and so some of that timing is just how the biology of death works. But I think that there is definitely um psychological and spiritual release, and a lot of people are aware of who's with them and the environment that they are in, they get comfortable and then they let go.
unknownYeah.
SPEAKER_02Yeah, we kept teasing my mom saying, You just wanted extra days for the three of us to talk over your bedside, and we've shared stories. And I think there's some beauty behind having that service and being able to gather together, and we'll never be able to take that away now as a memory that we had. So this has been so helpful. I think from a listener perspective, I think this is going to be so helpful for them. Any last words of advice for somebody that has that is going into hospice care or that's in hospice care right now, whether they're having a good experience or they're struggling, is there anything you want to leave them with? And then we'll make sure uh we tag all of your resources at the bottom of the of the show notes.
SPEAKER_00I would tell someone who is considering hospice or currently on hospice care is be an advocate. Be an advocate for yourself, be an advocate for your loved one. So, caregivers, advocate for the care that you uh your loved one is receiving, but also be an advocate for yourself, take care of yourself and to remember that you're never truly alone in this journey. We're all going to do it, or we have done it, and everything you feel is okay. Everything you're feeling is okay.
SPEAKER_02That's a really good one. Yeah, because I think that was one of the things that they had said to us several times is each one of you are is going to be in a different journey, and you're going to be grieving and angry and frustrated and happy and crying and sad and giggling for no reason at all. You know, we're all going to be in that. And it could take it takes a long time to be able to figure that all out in your mind. And it's okay. So, where can my listeners find your podcast, your resources? Um, can you give them your website page?
SPEAKER_00Yes, you can find the podcast at theheartofhospice.com. All lowercase. Um, the podcast is there, the blog is there, there are a ton of resources there. Um, the website's going to be changing, and you'll see some updates at the end of January 2023. But the podcast, six years of podcasts, are on there. Everything from advocacy and self-care to what it's like to experience a hospice journey, all of that's there at theheartofhospice.com. You connect connect with me on Facebook and Instagram as well. And any hospice professionals or caregiving consultants that might be interested can check it out on LinkedIn as well. There's a page there too.
SPEAKER_02Wonderful, wonderful. Helen, this has been very informal. And I know that you and I are just helping one caregiver at a time in our journey, and that's all we want to do. And so if you're the person in hospice right now that needs that extra boost, go out here. Or if it's something that you know is gonna come up for you. I think there's gonna be so much. Like I said, I went out to hospice 101 and spent 15 minutes. And I'm like, I kind of understand it a little bit more now. If I was had to go back in it, I would know what questions to ask. So thank you very much, Helen. And um, I think it's just gonna be another great resource. If you're uh in my podcast, and now your your loved ones in hospice, jump on over to this resource. We all connect somehow, some way. Well, I hope you enjoyed this episode as much as I did. I actually had just a really great conversation with Helen. It was nice to go ahead and put some good memories and some really some closure on the end-of-life care that I had with my mom and dad. And what a great way to go ahead and share that with you. And I hope you find found some benefit out of it. Even if you are not caring for a loved one in their end of life stage, you can always keep this one in your back pocket and come back to it if you ever need it. Also, if you know somebody that could benefit from hearing this podcast episode, share it with them. What a beautiful gift you could provide to them with this podcast episode and Helen's and the Heart of Hospice resource for that person because you know caregiving is just a tough journey, and any type of resources can truly help. So, as always, I would appreciate any time you share the episode. Give me that five-star rating on your podcast app that you listen to, or any type of reviews, because that helps me get to the top of wherever people are searching for and share it with more and more uh pod or more and more caregiver listeners, and that would just truly help me. One last piece of just love and advice for you is you know, thank you for listening. And as always, I hope that you're always trying to look at ways to fill your cup, make life a little bit easier, and get through this season called the Caregiver Journey. So you take care and we'll talk to you again next week. Bye for now.