Beth Cavenaugh RN, BSN is a certified hospice and palliative care nurse, Reiki practitioner, writer, and educator. Sliding into her 25th year as a nurse, Beth has spent the last 15 caring for hospice patients. Beth writes about end-of-life matters and published Some Light at the End, Your Bedside Guide to Peaceful Palliative and Hospice Care.
- Some of the topics we covered in this conversation includethe challenges of taking care of a hospice patient
can people be more accepting of death?
the regret people can feel after taking care of their loved one
how people die and the varied ways and timeline that people die.
what to expect at the end of life
how to Manage Anxiety for the Hospice Patient and the Caregiver
how to take care of yourself when you are taking care of a hospice patient
for more on Beth, visit:
Brian Smith 0:00
Close your eyes and imagine what are the things in life that causes the greatest pain, the things that bring us grief, or challenges, challenges designed to help us grow to ultimately become what we were always meant to be. We feel like we’ve been buried, but what if, like a seed we’ve been planted and having been planted, to grow to become a mighty tree. Now, open your eyes. Open your eyes to this way of viewing life. Come with me as we explore your true, infinite, eternal nature. This is grief to growth. And I am your host, Brian Smith. Hey everybody, this is Brian Smith back with another episode of grief to growth and today I’ve got with me Beth Cavanaugh. As always, I’m gonna read Beth’s bio and introduce her and then we’re going to have a conversation. Beth is a certified Hospice and Palliative Care Nurse. She’s a Reiki practitioner. She’s a writer, and she’s an educator. She’s going into her 25th year as a nurse and she spent the last 15 years caring for hospice patients. Beth writes about end of life matters and published a book some light at the end, your bedside guide a peaceful palliative and hospice care. So with that, I want to introduce Beth Cavanaugh. Hi, Brian, thanks for having me today. Yeah, thanks for being here. I’m really looking forward to talking to you. I’m always fascinated by people that go into the field of palliative care. And I know what type of nurse were you before you went into this field and then what made you decide to go into palliative care.
Um, I think I was just kind of a regular nurse, you know, when you’re when you start out, you kind of go wherever you can get a job, I worked in internal medicine for a while I worked at an AIDS hospice for a while I worked at, in a nursing home for three weeks, person short stay surgery. And after, you know, I was raising kids at the time. So after about a decade of nursing, I took a break, I wanted to just kind of pause because I thought, you know, short stay surgery was the the people were amazing, the schedule was amazing. But I wasn’t feeling fulfilled as a nurse. And I think I just had a little more space in my life to kind of look for something that was maybe a little more fulfilling to me. And, and so I took about nine months off, and I just hung out with my kids, my family and and really kind of explored what would feel meaningful to me. When I worked at the AIDS hospice, I just was there for about a year and a half. But that that had a profound impact on me just being able to show up and be present for people at the end of life. And my mom died in 1998. So in those first two years of being a nurse, my mom had died. And I was able to be with her and experience hospice care. And I took care of her at the end of her life. And so I found this really sweet hospice home here in Portland and, and started to work there. And that’s when I felt like I had kind of landed professionally.
Brian Smith 3:13
Interesting. So and that’s when you decide you’re just going to go into palliative care like full time.
Well, I guess so. I mean, I think I never really like make a decision to Oh, this is going to be my life’s work. But I definitely felt like I was going to stay. And it felt really good every day that I showed up. And it felt very meaningful. I didn’t realize with hospice care, there’s you take care of the family, as well as the patient and I loved that I loved, you know, there were 50% of my patient and my time, and I loved educating them. And I loved to be able to because it was in a hospice home, I was actually able to be present for the deaths of my patients. A lot of times Hospice is in a patient’s home. So you’re not as a nurse, you’re not necessarily there when they die. So it felt like it was a really special place in general, and a spiritual place. And it felt very sacred and holy to me. And so I just, I kind of kept kept at it.
Brian Smith 4:20
Yeah. So what are some of the challenges of taking care of a hospice patient? You mentioned one thing that most of us don’t realize is you spend a lot of your time with the family. Mm hmm. So what are some of the other challenges?
Well, I think that let’s see. You know, a lot of times when people come on to hospice, they’re not exactly ready to die. So so there’s a lot of emotional work that you have to kind of sit with the patients and help them process the end of their life and, and maybe do some life review or just checking in with them as they go through their their anger. Oh, You know, relationship issues. So, it hospice care is the emotional, spiritual and physical care of a patient. So it’s very holistic. And life brings up all of those issues, you know, you have all these physical things going on. But you also have, you know, how do I want to exit this earth? How do I want to leave the planet behind? How do I want to, you know, tidy up my business with my family and my friends. So, it’s challenging, but it’s also, you know, also the beauty in it, like, as you say, every challenging moment has opportunities for beauty and growth. And so I love being in that space with people, but it is, I’m not a social worker, I’m not a trained, you know, Counselor. But as an as a nurse, you just show up for these moments, you happen to be there at the bedside, when they’re kind of going, what is happening to me, I’m 50, I just climbed Mount Hood, you know, six months ago, and here, I am dying, and you just have to kind of be present for them. And, you know, I mean, I can’t help them work through their stuff, but I can bear witness to their suffering that they’re going through.
Brian Smith 6:15
Yeah, I think that’s one of the things I’ve learned a little bit about hospice work. And as you said, you can’t really offer certain types of help, I guess. So what’s the line of for you? How much help you can offer someone that says, like, what’s going on with me? Or I’m scared?
Well, I think that the, the best advice I received from another nurse was, sometimes you don’t have to have answers, and silence is okay. And that really freed me up enormously to just be with people, and sit in that comfortable silence that most of us hate anyway, the seven second pause, and allow them the space to be there or just, you know, give them that sounds shitty, I’m so sorry. This sounds terrible. I can’t I can’t imagine what you’re going through. But, but not leaving the room and staying in the room? And you know, because a lot of people don’t want to be in that really uncomfortable spot.
Brian Smith 7:19
Did you find our Do you find people accepting other deaths generally, or people? Are they fearful? Or what? What’s the range of emotions that you see?
Yeah, um, I see. There’s a wide variety of emotions there is there’s fear, there’s anger, there’s desperation, there’s depression, there’s flatness, there is, you know, I would say maybe 10%. This is according to Beth Cavanaugh statistics are, are joyful about it, you know, and that’s generally somebody who has is, you know, in their 90s isn’t has lived a very full life and is very supported, and their symptoms are managed, and maybe they have kind of this vision of the afterlife and what’s coming next. But, but I think, and I think most people get to this point of acceptance. And, and it’s really, sometimes it feels like resignation. But I do think there’s this acceptance and this relief that can happen for most patients. And I think when people get to that point, it’s it’s a relief for them, it may not be a relief for the family, because that’s, that’s a, that’s a entirely, you know, different perspective and issue that’s going on, because a lot of times, families are well, always families are going through their own personal emotions around their loved one dying. So I do think that I’ve definitely seen acceptance happen and and that is just part of the beauty of why I like to be there because I do think hospice gives people an opportunity to really process you know, the end of their life and, and find some peace and acceptance. We also have social workers on our team. We have chaplains on our team, we have amazing aides on our team and volunteers. So so there’s this team of people, that is all, you know, we all have the same goal in mind, which is to support this patient as they’re dying to keep them comfortable and to allow them the opportunity to process the end of their life.
Brian Smith 9:49
Yeah, so you touched on something there, you know, as we were saying, there’s the patient and how they’re viewing their passing and then there’s the family how they’re viewing it. So it’s Are there ways that you can help families become more accepting of the demise of their loved one?
Yeah, I mean, in theory, yes, there are, I think everybody’s very different in terms of their acceptance of death. Like my dad, when my mom was dying, I was very, I was acutely aware the whole time that she, her prognosis was not good with lung cancer. And so from the start of her diagnosis, I was kind of anticipating that she was going to die. And so that was, but I’m also very, like, I’m a nurse, so I’m kind of realistic to a fault. And my dad, his whole goal was to keep her alive to keep her well to heal her to feed her, you know, so, he and he never, I really don’t think he ever accepted that she was gonna die, ever, you know, until afterwards, and even even then it’s difficult to accept. I think that I mean, my thing with families is to be have kind of a gentle but transparent offering, really to talk about, you know, continue to talk about the importance of this time. And, you know, to talk about what what does this patient need at this time, I think you can talk about death and dying. You know, a lot of people don’t like the words death and dying, but you can say, you know, what would your grandma want right now, at this time? Is it important for her to have a religious ritual? Is it important for her should we call it her sister that she keeps talking about, and maybe she can talk to her on the phone. So I, I’m constantly trying to just plant the seed like that, this is the time, this is the only time that we can really give the patient what they need at the end of their lives, so they can die more peacefully, ideally. And a lot of times, you have to be pretty subtle about it. Because like I said, a lot of people don’t like talking about death or dying. And, and they don’t want to hear those words. And you know, a lot of people don’t believe a lot of people don’t believe that their loved one is actually going to die. I mean, like I said, my dad, he was totally surprised. I was actually surprised when my mom died. I’ve been with my patients who’ve been on hospice for years or months. And when they die, I’m still surprised, you know, there is this element of surprise, like, Oh, my gosh, I can’t believe they just died right now. And so yeah, I think that I think it’s just continuing to offer some transparent but gentle information, that they have opportunities for closure and to express their love to their loved one.
Brian Smith 12:51
Yeah, yeah. I wanted to ask you this, you know, we have this idea that death should be easy and peaceful. And then sometimes it is, what what about when it’s not? When it’s not peaceful? And it’s not easy. The patient might be scared, they’re resistant? What What would you offer to a patient? And what would you offer to a family going through that?
Yeah, um, you know, I’ve definitely been around plenty of not peaceful deaths. And so I guess that with that, I just want to say that it’s common, I think, for people who are grieving a loved one, you know, there’s a sense of, of maybe guilt or concern over how it went down. And they think maybe it could have been better, maybe they could have done something different. But, but I’m here to say that sometimes deaths aren’t peaceful, and sometimes they’re not as beautiful as you want them to be. And sometimes patients might be in pain. I mean, we as hospice team, we try it as hard as we can to get symptoms manage. But, you know, death happens, kind of as it happens, and with all the medical intervention that there can possibly be, and a lot of times patients are in their home. So, you know, it’s not like they have all the medical intervention that we can possibly give to them. So sometimes it’s just not as pretty or peaceful as we all want it to be. And
Unknown Speaker 14:24
when it’s not,
I mean, for for patients, I think we’re constantly you know, if they have physical symptoms, that that is kind of a constant thing that is you need to titrate medications for pain management and you need to titrate medications, for shortness of breath. So you’re kind of constantly trying to alleviate these physical symptoms that they’re having. A lot of times patients will have this existential suffering, which you know, is that I don’t want to die. You know, I don’t ever want to die. I’m not willing And then there’s this just suffering element that is going on while people are dying. And a lot of times, you can’t medicate that away, I mean, you can try. And there’s certainly tools that we have, but sometimes you can’t. And I think if you again, show up for them, and just try to be present to it, and call on your hospice team for any medical guidance that they can give, you know, that that’s the best support we can offer. And then for the family, I think just realizing that sometimes it’s not peaceful, and it’s not beautiful, so that people don’t kick themselves after they’ve died to think that maybe they could have done something differently. Because sometimes you just can’t. Yeah, I do think that if you contact the hospice, and really, you know, have them come over and help as much as they can, you know, then at least, we can try our best to medicate and, you know, get them comfy.
Brian Smith 16:01
Yeah, I actually have a friend that just went through this with with her mother, and she had had her mother in her home. And she, she was claiming to live for literally years, they thought they were she was about the past, and, but she just, you know, kept hanging around. And, you know, I my friend was like, I thought this was supposed to be peaceful. You know, I thought that was supposed to be beautiful. And I think sometimes we have that expectation. And then there’s the guilt that we weren’t able to make it that way. And also, another thing I’ve seen is people feeling like, I need to keep this person in my home, you know, and running themselves ragged trying to keep them in their home. What would you as a as a hospice professional say to someone going through that decision as to when do I let go of trying to do everything?
Well, we need as you know, we can’t do everything, it’s impossible, or we just, you know, burnout. And I think that you know, Hospice is a beautiful system, but it’s also an imperfect system. A lot of times patients, there aren’t many other opportunities for them to stay anywhere else other than their home. It You know, a lot of this is like insurance driven and financially driven. And so you know, you have to do out of pocket cost if you go somewhere like a nursing home or facility. And, or you can have caregivers come into your home, which you know, is expensive, but my thing is always Oh my God, if you can afford it, bring caregivers into your home to help you out. Because a lot of people, most people do not like changing diapers, adult diapers, that’s a really, it’s a really hard thing to do. And with family and family dynamics, and how that goes, you know, that’s not, that’s not the kind of relationship most people have with their mother or their father. So I think you can’t do it all. I think if you have the financial means to get caregivers to come in periodically throughout the day or throughout the week, just to alleviate some of the burden or call in the troops, you know, calling other family members calling friends to help out. So I think some oftentimes hospice care is in the home, I think that if it’s in, but if people have the opportunity to go into a hospice home, I mean, I, I work at a hospice home now. And I love working at an inpatient unit, because I feel like as soon as they come through the doors, that family is just so relieved, you know, because it’s been so hard, like you’re saying to take care of their loved one at home, because, you know, PS, their loved one is also the family who’s taking care of the patient who’s dying, that family member is totally going through their own grief. They’re doing all this physical care and, and labor of their loved one, which is the most meaningful gift you can give to somebody, but it is also exhausting. So, you know, it is just kind of a delicate dance. And I think that if somebody has the opportunity to go into hospice home, and the family is all agreeable, and they’ve checked it out. I think it’s a great option because people who are in the hospice homes are trained in end of life care and pain and symptom management. And, you know, and and there’s the team of support people that can support the patient and the family while they’re in there with their loved one. So,
Brian Smith 19:33
yeah, and, you know, there obviously, are financial considerations, but I’ve seen people it’s like a guilt thing. You know, it’s like, well, she’s my mother. She took care of me when I was a baby. So now I need to take care of her, you know, something like that. And then, but I would point out to like, Okay, well, they have three shifts of nurses when they’re in a full facility, and you’re just one person. So even if you are a nurse, you couldn’t do Yeah,
you can’t I mean, you just simply cannot take care of somebody 24 seven without losing your mind or hurting your back. I mean, yeah, like I said, there’s a ton of labor involved. So I think that, you know, one of my, when I was thinking about being on your podcast, I and people who are grieving their loved one, one of my missions I was feeling very strongly about is to alleviate people of their guilt burden that they feel because it is, you can be a much better daughter, when you have somebody else who’s showering your mom and bathing your mom. And you can just show up for your mom and not worry about the medication stuff or, you know, changing her diaper or administering suppositories. So I just think to, it’s hard to stay in the daughter lane, when you also have to, you know, shower your mom and change your linens. But I think if you have the opportunity, boy, I say do it right away. And you know, most people sign up very late for hospice. So I think that I heard I’m terrible with statistics I heard recently, the average length of stay was about 20 days. But so most people sign up for hospice late. And, and most people don’t realize that, it’s probably not going to be that long of a time. So the sooner you can get caregivers in, just try it, you know, for that first week. And a lot of times, the patient will decline over the next three weeks. And, you know, you will have been able to be with your mom and a really supportive way, not physically exhausted, you’ll be able to remember, you’ll be able to think of all the things you want to tell her and and you can have, you know, some other caregivers in there to do some of that physical labor.
Brian Smith 21:52
Yeah, I think that’s really important. And I’m glad that we touched on that, because that’s one of the big things I like to do also is alleviate people from this guilt that we seem to heap on ourselves, and expect ourselves to be, you know, Superman, you know, and be able to do everything. And I like what you just said, you know, this, this frees you up to do other things that are more beneficial and not, you know, tear down your own health while you’re supposedly trying to help someone else. In a situation that’s impossible for you to really handle on your own.
Right, right. And I see a lot of 80 year old, you know, men taking care of their eight year old wives. And I just feel so sad for them. Because it’s, like I said, it’s a lot of labor. And it’s a lot of work. And usually 80 year olds have their own health conditions going on. And they are physically exhausted, too. So I think that if you can have anybody else come in to help do it and do it sooner than later.
Brian Smith 22:49
Yeah, one of the questions and we kind of touched on this before, but I want to go back to it, you know, I think we have this Hollywood image of how people are supposed to die, or how people die. So from your perspective, what what’s kind of the range of what you’ve seen from people going through the process?
Um, well, I’ve seen it all. And I’ve seen people just kind of slipped away. So I could go a lot of different ways with this, but in terms of like, how death looks in general, definitely is very different for everybody. And I think I’ve seen a lot of people, you know, slip out of here really peacefully, subtly, gently, no symptoms, no physical symptoms, you know, family around you know, that that’s, that’s a beautiful death, when they’re the physical symptoms are being managed, they’re emotionally accepting or ready to die. And their family is supporting them and around them.
I’ve seen you know, the, one of the worst. Do you want me to talk about the worst? I don’t even know.
Brian Smith 24:10
You know, people need to know, what’s that range of normal?
Yeah, well, I mean, these are the, you know, best case scenario, worst case scenario, and I’ve seen somebody just really suffer on the way out and family was not on board. patient was miserable and in pain and died from probably an event a terminal event. So when I got there, you know, something had happened, maybe a pulmonary embolus or something like that which causes respiratory distress for people and, and he was agitated and trying to get out of the bed and back into bed and out of bed and back in the bed. And and we’ve, you know, I was giving him as much medication as I could, talking to the doctor the whole time. Trying to get the family like back in the room to realize that this patient was actually dying because it had happened. So suddenly, and, and then the patient finally settled in a family all gathered around. And it and I mean, we all saw, I did too, because it was, it was really awful. And, but I feel like, you know, in the end, you know, the family was there gathered around, and, and sobbing and they were together and this guy went with a fight, like the biggest fight I’ve ever seen. And you know, it was awful to witness. After that, I thought, God, do I need to go to like Calcutta and work in the streets of India, so I can get used to this, you know, like terrible stuff. And then I thought, No, no, like, it can be so much better. I know, it could be better. It’s just this is this is the anomaly. So sometimes patients die like that. Oftentimes, patients slip away, there’s this other kind of in between, like, gradual process where people kind of die kind of slowly over time, and hopefully you manage their symptoms, you’re kind of titrating their medications, so that their pain is managed, and, you know, they’re as comfortable as possible, they end up you know, sleeping more than they can’t get out of bed. And they continue to sleep more, and they die. And usually you can tell like hospice nurses, we can usually tell when patients are, I mean, in theory, about seven days away, and we can kind of just keep going, Okay, yeah, like they’re getting closer, they’re getting closer. So, it is different for everybody. I also want patients, family members to know that even though you know, we hospice nurses are like, okay, you know, they’re close, it’s gonna happen, we’re wrong all the time. Because death is this divine mystical event that happens. And even though we think we’re in control of a lot of things, we’re not in control of a lot of things. So I really believe that there’s just this bigger thing happening. And sometimes patients die suddenly, like I talked about that one gentleman, he had a terminal event, you know, I’ll be in with a patient. Maybe I’ll medicate him. Maybe he’s like doing the crossword puzzle. This has happened before. And I’ve come back and he had an event. And he’s actively dying. So and he died maybe an hour later. Sometimes patients are looking at me and and families leave the room to go to lunch. And they’ve been there holding vigil the whole time. Waiting for the patient to die, patient doesn’t die. As soon as they leave to lunch, the patient starts to actively die. I mean, it feels very directed. Yeah. So So there, there’s, you know, people, everybody wants to be there at the moment of death. But sometimes, it just with all of our medical technology, and me being a hospice nurse for 15 years, sometimes we cannot call it
Brian Smith 28:19
right. Well, and I think sometimes it’s because the patient calls it because they because I literally was talking to someone last week that their son was going through the dyeing process. And they were watching, they were setting a vigil and everything. And they’re waiting for that last breath waiting to see the last breath. And as soon as they left the room, he took his last breath. So apparently, it’s been your experience also.
Oh, yeah. I mean, and I’ve had patients who, it hasn’t happened that many times, but I have had patients who I’ve said, You are actively dying right now. And I would really like to call your family and they have shook their head. No, don’t call my family. Or I have said, Can I bring your family in the room? And they will shake their head and say no, or another patient? We said, we’ve called your wife she’s coming and he is, you know, shaking his head? No, like, I don’t want my family in the room. And I don’t know, if it’s a protective thing. You know, it’s likely that maybe it’s just last memories. Maybe it’s how they want to go. They don’t want people to be around them. You know, dying is a very it’s an individual sport. It is. You know, I mean, they are, we don’t know what it’s going to be like for us. I think I want my entire family around, but maybe I don’t want my entire family around. I won’t know until that happens.
Brian Smith 29:38
Yeah. And as you said, it’s I think it’s differed by for some people, I think it’s it’s a privacy thing. It’s like I want to do this alone from this has been, you know, relayed to me anyway. And I do I’m glad that we went through that because I want people to understand that there are different ranges of things that can happen. It’s not your fault if it wasn’t great. And the thing that I look at dying is kind of like birth. It’s a transition So the thing is when we’re born some births easy. Some births, like my daughter, Shayna is more, more complicated, more difficult. But either way we get there, you know, so when people when people are going, when they’re transitioning, they’re making the transition. And they’ve you know, so there shouldn’t be any regret, it shouldn’t be. It doesn’t help to have regrets about what you could or could or shouldn’t have done. At this point, the way I look at that the person is okay, you know, they’ve made it, they’ve made it through the process.
We’ll get back to grief to growth in just a few seconds. Did you know that Brian is an author and a life coach, if you’re grieving or know someone who is grieving his book, grief to growth is a best selling easy to read book that might help you or someone you know, people work with Brian as a life coach, to break through barriers and live their best lives. You can find out more about Brian and what he offers at WWW dot grief to growth com, www dot g ri e f, the number two, gr o w th comm or text growth gr o w t h 231996. If you’d like to support this podcast, visit www.patreon.com slash grief to growth www.patreon.com slash g ri e f the number two gr o w th to make a financial contribution. And now back to grief to growth.
Brian Smith 31:33
Have you experienced like people that are that are going through when they get close? Talking about visitors coming to see them better people that are deceased?
Mm hmm. Yeah, I love that. I mean, you know, these are all the things that keep me staying in hospice, because I really do appreciate and love this connection with the divine, which is what being being in end of life care really feels very connected to the divine, at least for me, it does and, and most hospice nurses and people work in hospice, they, they, that is a very satisfying and rich part of hospice. I have had, I’ve been in the room with Jesus, you know, so I was with a patient and, and she told me, you know, that Jesus was here, and he was giving her a final blessing. And, and, and the family was so happy to hear that story. You know, just, you know, those kinds of things really people hold on to and, and the patient who was dying, she had so much peace about her. I have been sitting next to another patient who was just sitting, sitting and chatting with her. And I said, you know, I’m gonna go check out another patient. Is there anything you need? And she said, Oh, no, my husband’s. He’s here. He’s, he’s sitting in that chair with you. So. So he was, you know, just right there the whole time. And he had died 10 years ago. And yeah, so I’ve definitely had a lot of experiences with people kind of see, you can tell they’re kind of in conversation with other beings in the room. And, you know, it doesn’t like I said, it doesn’t happen all the time for me, but I definitely have enough of those where it makes me feel like it’s very real. And this, this connection with spirit is very real. And it kind of drives my enthusiasm, I guess, for connecting with more divine elements of this end to life stuff.
Brian Smith 33:38
Yeah, yeah, exactly. I want to ask you, in your experience, because this is I’ve heard this that typically, it’s more nurses believe in the afterlife experience, and doctors tend to not is that been your experience working in hospice care?
Um, I don’t. You know, it’s so funny. Like, I don’t even know, I don’t know if I could. I don’t know if I’ve ever pulled my coworkers to find out what their beliefs are.
Brian Smith 34:07
So you guys don’t talk about it?
I think I do with some of our some nurses. Yeah, we do. Definitely. But I haven’t really talked to a bunch of physicians about it. So I should start doing that. I’d like that, I guess. I don’t know. I mean, I, I can’t imagine because I feel like the physicians are in this really amazing space. I would think that we all believe in something bigger. That’s a weird generalization to make, but it’s for me anyway, it’s really hard to be in healthcare and not think that there is something bigger out there. And we have to find meaning in our work. And it’s really hard to find meaning and suffering if you don’t feel like you know, this is just kind of our spiritual stretching as humans and you know, I just I feel like there’s so much about it. Healthcare that is very difficult to witness. But I think you have to have some Dr. Dominic vishawn, he wrote how doctors care. And he talks a lot about how it’s important to have some type of philosophy of care or spirituality of care, if you’re agnostic, or you know, whatever, but some kind of philosophy of care so that you can find meaning in the work that you do. Not even just hospice, but, you know, being a clinician of any kind in healthcare. So I think that I think to really have meaning in this work, you kind of have to dwell and ruminate on what what kind of gifts your patients are giving you. And, and, and what is next. And what is this all for? I mean, you can’t help but not think about that.
Brian Smith 35:55
Well, you One would think, but it’s not true. Right? Right. Right. Yeah. And the reason that it might be different in your experience, even because you’re in palliative care. So that’s a that’s a very deliberate thing to go into, and maybe the doctors to go into that maybe feel a little bit differently. But like, I think about Dr. Eben Alexander, who was a neurologist for, you know, so many years, and, you know, brain surgeon and just was a total materialist until he had his near death experience and wrote a couple of books about it. But he didn’t, he didn’t, he didn’t look at the other side. I mean, because doctors are trained to death as the enemy. We’re always fighting death. It’s all about keeping people here. So I was going to ask you this, and you already kind of answered it. Because I know people will probably say to you, well, isn’t it depressing being around dying people all the time? And but your your view of it’s different, right?
Yeah, I mean, I feel like it’s so rich and real. And I’m the type of person who like I’ve, I’ve never been good at, like, just chit chatting, and, you know, just talking about the weather, pop culture, I don’t even know anything that’s going on with pop culture. But I, I really like to go go deep with people and see how they’re really doing and what’s going on, and how’s them on yada, yada. So, um,
Unknown Speaker 37:15
what was your question? Wow,
Brian Smith 37:16
I was I was asking you about people would ask, I would think they would ask you, is it depressing being? Like, just around death? Isn’t that icky?
Well, it’s interesting, because the firt, after the first year of being in hospice, I definitely felt depressed. And I was reading in a palliative care textbook randomly, that there are the stages that people in hospice care go through. And after about nine months, people experienced depression. And, and I was kind of mad, because nobody had told me that this was going to be, you know, a possibility. And, and what it did for me was really go, Oh, I had to, then after it’s sorry, after the nine to 12 months, depression, then you get to this place over the next year. I can’t remember what it’s called. But it’s kind of being okay with, you know, this end of life event. And sorry, I’m not very articulate about it. But so I do think it can be very depressing. But I also think you have to kind of do a lot of work to get to this place of being okay with watching people suffering, bearing witness to their suffering, and not trying to fix a lot of their suffering. You know, like, as hospice nurses, we can try to fix their physical symptoms, but there’s a lot of suffering people just have to do on their own and on their own timeframe. So I don’t find hospice depressing. I find it very rich, and I find it, you know, full of life. I mean, our whole goal is to maximize the quality of their life, you know, not the quantity of their life. So I love being able to, you know, bring someone to Sunday, when you know, they’ve been diabetic their whole life, and that’s what they want to eat. You know, I, I love bringing quality of life, like, even if it’s, you know, having their grandmother or their grandbaby come in and visit them. I just feel like to have this moment in time where you actually do know that you’re gonna die. And to be intentional about it is kind of amazing. Really. Yeah. So it can be very relevant. Yeah, yeah. Yeah. I don’t find it depressing. And most hospice nurses, I would say have really they’re very fun to work with. Yeah. So yeah.
Brian Smith 39:41
Well, I think when people say something like it’s Don’t you find it depressing that that tells me something about their view of death. As I said, I view death as a transition. I view it. I’ve interviewed people and there’s just this term now. It’s relatively new. I guess it’s called Death doula. So you have a birth doula that brings back babies And these women, the columns are usually women, but people that call themselves as doulas, because they’re looking at it as a birthing into the next world. So they’re sitting with the patient, and they’re working, you know, helping them with their spiritual needs and helping the family and other things, you know, practical things, getting the wills together and stuff like that. But that’s why it’s not depressing, because there’s, there’s meaning in the work, and you’re helping someone if you believe there’s something else. It’s not you’re not watching people die, you’re watching people move on to the next thing.
Yeah, and, you know, I do feel like even for people who don’t feel like there’s an afterlife of some kind, it is still very gratifying to be able to comfort and support people, you know, and give them what they need at this final, their final moments. How are they view that? So even without I think, like a spiritual worldview of what’s beyond this, I think people can find it very satisfying to do this kind of work. And, you know, I think I was thinking about the depressing piece. And I think that most people have that, too. I think it’s because, you know, when they’ve lost a loved one, it’s it’s hard. I mean, going through that grief, as you know, is really a challenging, you know, talk about spiritual stretch. I mean, it’s tough. And, and I’ve taken care of family members and friends. And then hospice patients who I don’t know. And it is, it is very different when I am taking care of family or friend, because I feel I guess, I don’t know, if responsibility, but there’s the you know, there’s just kind of this added burden and kind of emotional, definitely emotional connection. I mean, it is, you know, I still get really sad like, I that will never go away for me, and I hope it never does, you know. So it’s a it’s it. It is very different when you’re taking care of your own family members.
Brian Smith 42:04
Yeah, it is. And you and you touched on something here that I think is really important, because I always I assume that not everybody believes in an afterlife. To me, it’s just it’s self evident. So I don’t, I don’t understand people that don’t. But even if you don’t, we know that when you’re born, you’re going to die, there’s 100% chance that you’re going to die. So there’s something about our society that just doesn’t want to accept that we want it we want to shut it away. We want to pretend it doesn’t happen. So whenever happens, people are surprised. You know, it just always amazes me. I’ll see some celebrity that just died at 99. And people are like, Oh, it’s so sad. Like, how is it sad when someone that’s 99 years old, I’m sorry. I don’t mean to be callous. But that’s not sad. For me. It’s it’s planets, it’s biologically planned. If you don’t believe anything else, that we can’t live forever. So the work that you do is extremely important. I want to ask you about your book, some light, some light at the end your bedside guide to peaceful palliative and hospice care. So first of all, who’s it for?
I actually wrote it to a terminally ill patient. So if a patient was diagnosed with a terminal illness and, and the physician may have said, Okay, now it’s the time for hospice, I basically wrote the book from this is the start of their diagnosis to the end of their life. And, and I write it specifically to the patient. And I’m not sure if that was a great marketing move. But but but you know, I didn’t know anything about book writing and book marketing or anything, you know, when I started this process years ago, but I, I, I write about hospice, what it is what it isn’t, I write about options that you have choosing not to have hospice or if you do choose hospice, you know, how you can choose a hospice. I talked about just what the end of life looks like when patients energy and mobility decline when their appetite declines. I talked about managing symptoms, shortness of breath, constipation, pain, anxiety, delirium, all those things. And I talk about the end stage of somebody dying, and I talk about care of the dying. So I wrote it for a patient with terminal illness, but I definitely you know, is thinking about the caregiver every step of the way, because, you know, so all of our work is patient and family centered. So, all of this I’m constantly thinking about family members who are taking care of a loved one, because that is generally how hospice care looks.
Brian Smith 44:39
Yeah, yeah. And a lot of times the the transition is more difficult on the family than it is on the on the patient. So it’s, I think it’s really good to have that, that support there for the family. At least, that’s been my experience in a lot of cases. And, you know, and kind of what to what to expect, you know, because, right again, we don’t we don’t know and We can, we can face things so much better if we have an idea, you know of what to expect. So it sounds like a great book for not only the person that’s gotten the diagnosis, but maybe for the person that’s, that’s going to be the caregiver caregiver going alongside them.
Yeah, I mean, that was definitely my intent because I, I’ve done home hospice before, and I’ve done inpatient hospice, and I, I’ve done triage. So I’ve kind of seen all sides of hospice nursing. And I feel like patients and families struggle with this process, because they don’t know what it’s going to look like. And, you know, it’s like anything, I mean, I had an appliance guy come over the other day, and he was helping me with the dishwasher. And he was explaining everything about my dishwasher. And, and, and I just thought, Oh, this is so nice to have somebody who knows about this stuff. I don’t want to I don’t want to learn about it. But I’m glad you go about it. So it’s, it’s just kind of like that, you just want somebody who can kind of guide you and support you along this process. And I really, you know, I saw so many patients and families struggle, and they always have the same questions for us, the hospice nurses, you know, and, you know, tell me about this medication, tell me why they’re constipated. You know, why are we increasing the pain medication. And so I really wanted to have just a really digestible, easy, gentle but transparent book about this process. So people can refer to it when, when they’re ready for the information. Because as you know, as I’m yammering on and on and on, you know, people’s eyes just glaze over, and they’re done after a certain amount of time. And then you you know, I mean, people don’t remember that much when they’re in the state of grief or crisis or anything. So I just wanted to help them to have something physical and tangible they could hold on to when they needed it.
Brian Smith 46:49
So what would you say are like the top two or three things that people need to know or might surprise people? Um,
well, I think that a lot of patients and families are kind of surprised, but just the decline that happens. And I think it could be so much easier on everybody, if we just knew that this was generally how it goes where people aren’t going to be, have as much energy as they used to have, and over time, it’s gonna decline. And then they won’t be able to actually walk around unless they have a walker, and then it’s a wheelchair, and then their bed bound. So through all of these stages, they’re going to need help, they’re going to need somebody with them, they’re going to need help off the toilet, then they’re going to need help getting their briefs changed in bed. So I just think if we could kind of anticipate that this is generally how it looks. It just minimizes all that surprise. You know, I, I mean, when I was taking care of my mom, I was surprised at every turn, and I had, I’m a nurse, I’m a hospice nurse, but you know, every all of that information kind of went out the window when I was taking care of my mom. Yeah. And so I think just and then there’s also the food thing. A lot of patients and families feel like, well, families feel like we’re starving patients, when we don’t feed them work. It’s very important to feed the patients, I’m a big fan of food, I’m a big fan of any kind of food, they want their favorite things, but at a certain time, you know, it becomes they lose their appetite. They don’t need as many calories as you are I do. They, you know, they just they can’t, it’s harder to swallow. So that you have to transition them to softer foods, foods that are easy to swallow. You, you know, I mean, it’s just kind of this ongoing thing, then you need like ice cream, or yogurt or applesauce, things that are really easy to swallow, and then they won’t be able to swallow anything. A lot of families really suffer because of this families. You know, our whole thing is to like feed our people, right? So. So you know, it’s a really hard thing to get on board with. I always say my dad, he was feeding mom steak and eggs until the day before she died, you know, and she just was like, please make him stop.
Brian Smith 49:20
Well, yeah, that’s that’s such a good point. Because in my family, my culture, it’s like, it’s all about food, you know, feeding people and stuff. And then, my friend I was talking about earlier going through this with her with her mother, her mother was like down to 90 pounds or less, was totally bedridden. And so she was drinking like maybe an insurance a day or something. And they’re like, weights and she’s starving. I’m like, how many calories Do you think she’s heard? Now, at that point, you know, just the input output. They’re not burning any calories. And there’s also seem to be a natural thing, I think with humans and with some animals. When we get near the end, they just stop eating.
No, that’s exactly right. That’s exactly right. And And I think that you know, a lot of a lot of families, when they use the word starving, I kind of go on high alert, because I don’t want, I don’t want families to feel that burden that they’re not giving their loved one what they need. Because there is this natural decline that’s happening in our body, this physical process where we don’t need to consume calories, the body is actually going through this process of dying, you know, and so like force, feeding force, fluids, all of that stuff, it’s actually it’s more harmful than beneficial at a certain point. So, I mean, we don’t we don’t recommend IV fluids, because it’s too hard on the kidneys. And, you know, it could go to places like the lungs or the feet and cause discomfort, or shortness of breath. So they’re really like you said, I mean, there really is this process of it’s not starvation, it’s just that they don’t have an appetite. And the body’s actually declining and, and dying. This is the work of dying, and they need food at this.
Brian Smith 50:59
I’m glad we discussed this because you know, it does. We’re so used to against feeding and water. And because it’s just the same life and we were I we’re not accepting the fact that life is, is ebbing here, it’s going away. And these things can actually be harmful, even though it seems cruel to say, at some point, I guess it’s like you were saying, and people don’t know this, at some point, we even stopped giving fluids, it’s like, we’re just going to, we’re just going to let them go.
And I think you can always do things like to, I mean, we always offer food. So we’ll bring in some yogurt and offer, you know, whatever they want, they might want to buy, they might want more than that. But always offer you know, if when it gets to this point where they’re really not wanting to eat much more than bites, just offering foods that they like ice cream, little tiny bites of things. You can always moisten their mouth so that they don’t you know, that minimize that feeling of thirst. moisten their mouth with swabs and stuff. So there’s things you can do to prevent any kind of discomfort, but an offering them things I think is really important. But there’s just a point where, you know, most people they don’t eat or drink anything before they’re dying.
Brian Smith 52:12
Yeah, well, that’s, that’s, I think, a really important point. And it’s one that I didn’t know, till pretty recently. So I’m glad that we were able to cover that for people. Um, what’s what’s, what are some of the things that people need to know? Um, I think that it’s important to, you know, like, so yeah, so what is, what is another thing that people might need to know or might surprise people?
Um, well, I think that, you know, I talked about people being surprised when the death happens. And because so much of Hospice is in people’s homes. I think people don’t really give consideration to what’s happening at the moment of death and after the death. And, I, I, I want people to know that when somebody dies in their home, they can take as long as they need before they need feel like they need to do the business, you know, call up hospice team, if they want support, they can call up the hospice team any any moment and say, Can somebody come over and support me my, my dad just died. But, but to think about that, those hours after the death, and there may be a ritual or something that you might want to do, you know, at our hospice house, we bathe the patient after they’ve died, you know, you take off all their equipment, their oxygen stuff, you we we have a quilt that we put over them in our other facility would put flour there, and then we’d offer a toast, we’d bring in sparkling apple cider and you know, sweet champagne glasses, and everybody would have a toast or something like that. So um, you know, one of my things with dying anyway, is I think it would be important for people to just consider, you know, what to do after their loved one has died. Just to for a little bit of closure, but it all that kind of stuff also helps with your grief down the road, you know, you can kind of hold on to the memories. But, yeah, so, but I think my biggest thing I want people who are on your podcast to know is that you know, if you cannot feel guilty about anything that happens really well somebody is in your home and you’re taking care of your loved one when they’re dying. I mean, that is my that is my prayer for you because I things just are not clean and tidy with death. It is an awkward process. It can be messy, it’s hard. It’s challenging, but it’s also beautiful and and profound. to enrich so. So just, you know, if you’re working through any kind of guilt about like how your loved one was for cared for, or what happened or why you weren’t there at this time, just know and trust that things happen as they should. And doing your best and showing up for them is the most loving gift you could have given to them. So,
Brian Smith 55:24
yeah, well, I really liked what you said about that little ritual after the person passes. I have a friend whose son passed away he had a terminal illness, he was in hospice, but he was at home. And after he passed, I think they they washed his body and took pictures with them and stuff, you know, and it was I was, I wouldn’t have thought of that. I thought it was so cool that she did that. And that’s the memory that they’ll always have that moment was, it was a beautiful moment for them. As opposed to, like you said, rushing out and during the business stuff, take your Take your time with it. And and, you know, that’s something that you can cherish for the rest of your time here.
Yeah, and, and really take as much time as you need I’ve had when I went to one patient’s home after he had died, and his sons were there, and they were playing their dad’s favorite music, and it was loud. And then we dressed their dad from head to toe, and like his, you know, Sunday best, and they were drinking, you know, whatever their dad’s favorite drink, it was like whiskey or bourbon or something like that. And, and it was just, it was filled with like, tears and laughter and, you know, the music. And I just think how I mean, I remember it, you know, and I’ve been with hundreds of people and they died and right. And I can’t imagine how good that will feel to them as they walk through the nest and the rest of their lives, knowing like just having the peace of that beautiful ritual that they did for their dad, you know, those last those last moments with him. Because, you know, oftentimes, especially if it’s 3am, and somebody dies, you call the hospice hospice calls the funeral home, funeral home comes out, and they take your loved one away to the funeral home. And it, it can be very jarring for people, you know, so I love it, if people can just kind of consider that, like the after, after death moments how they want that to look and ask the patient how they want it to like,
Brian Smith 57:29
yeah, that’s also a great idea to ask, ask the patient, you know, what would you like to have done at that point? That’s, that’s one of the things about being able to anticipate, you know, a transition or death is you can actually plan for it. And so hopefully, you’ll have, you know, fewer regrets. Yeah, and if you hadn’t, you know, hadn’t planned for it. So it’s, you know, I like the back of your book sounds like it’s very, very much needed for people that are going through this process that we don’t know a lot about, and just to be able to have that Handbook of you know, what to expect, you know, what types of things we need to plan for, because I know it does surprise people. You know, like you’re saying, Okay, perfect. We’ll say, Well, she’s sleeping all the time. Now. That’s, that’s kind of a normal phase, right? People go through words like near the end. They’re just my thing is I think they’re going between worlds and I’ve heard this from people who are death, doulas. It’s like they’re going back and forth at this time. So they’re sometimes here sometimes they’re not.
They call it the veil. The veil is thin. You know, which I love that analogy, just kind of crossing over back and forth.
Brian Smith 58:35
Yeah. So yeah, I have a friend she’s a media and she’s also debt bill. And she says she sits by the beds and she’s she can actually see in the other world and this world at the same time. So she sees the other spirits coming and going and them communing. You know, like we’re getting ready. We’re, you know, and I want to ask you this. Have you heard this people talking about taking a trip? Have you heard people say things? Yeah, yeah, I’m getting ready to go. I’ve got to get my bags packed.
Yeah, that happens. Often, actually. The travel metaphors, you know, it’s a thing. It’s a thing. And, and it’s so interesting. they’ll, they’ll I’ve heard about people waiting in lines for cruise ships. I thought that was a fun one. You know, if you think you’re going on a cruise ship, that’s great. waiting in lines, getting their tickets, needing their passport, having to catch the train, open the door, open the door, you know. So a lot of there’s a lot of movement that’s happening. And there’s definitely this journey element to the end of life, which, you know, I just think I find really fascinating too, because it’s a thing, you know,
Brian Smith 59:39
I think it’s final gifts is the book by Megan Callen, Maggie Callahan. And and she talks about travel metaphors and the the language of the dying and it’s a really sweet book about just the needs of dying expressed through there. Their communication that is subtle, and not very clear to us. But if we know if you know reading her book gives you some really good ideas and things to look for.
Brian Smith 1:00:12
Yeah, Raymond Moody wrote a book about nonsense. And lady, I think it was Lisa smart. And they were talking about what we what we call nonsense the language of the day. And I think a lot of times because we don’t understand the metaphors that they’re using. So and I think now back, when, by when my father in law was going through dementia, as he was getting to the later stages, he would say, all this crazy, seem like crazy stuff. And you talk about people that were always deceased, the people, it was funny, because he’s eight. Now, he was known people for many, many years. But he didn’t talk about them, he’d always talked about people that were deceased, and having seen them and what they were doing, or he was going to go see them. And at the time, I wasn’t aware enough to realize what was going on. I just thought it was nonsense, you know, we just started hallucinations. So I want to offer people to look out for those types of things. And when they happen, you know, maybe don’t dismiss it as they’re just hallucinating. Or it’s just the drugs talking.
Oh, right, I think you can really show up in a very different way. If you, you know, if somebody appears to be confused, to kind of sit down, and really, you can you can ask the patient Hmm, I’m not really understanding, or is there something you want to tell me or, you know, kind of asking open ended questions, if they’re able to communicate that way, they might be able to make it a little clearer for you. But also, I think, if you have this awareness that there are metaphors that are used at the end of life, and to look for them, I think you can really show up in a much more interested and engaged way, rather than the dismissive way that, you know, like, it’s easy to do, like, Oh, God, dad’s confused. Again, I don’t know why he’s talking about Uncle Joe. You know, like, Oh, that’s so I just think it’s so cool. Like, Wow, what an amazing opportunity to that dad’s connecting with Uncle Joe.
Brian Smith 1:02:02
Yeah, and the thing is, one thing, yeah, not be dismissive of the patient to know to support them and what they’re going through, but also for yourself, it could be it could make it such a much more rich experience for yourself. If you open your eyes up to what’s, you know, what’s really going on there? Definitely. Yeah. I love that about it’s been, it’s been fascinating getting to talk to you about your experience to talk to you about your book, I really appreciate the work that you do, I think it’s so needed. And I’m glad to get this out there to more people to understand what Hospice is and how it’s available for people. So any last thoughts you want to say before we wrap up this afternoon?
No, thank you for having me. And I am really appreciative of the work that you’re doing. Because you know, after somebody dies, it is it’s a long, it’s a long haul. So I’m in as you know, grief doesn’t just go away, you have to kind of integrate the loss throughout your life. So I love the work that you’re doing. And, you know, I love talking about this topic. So I really appreciate you having me on it because my family doesn’t really love me talking about death and dying all the time. So thanks for giving me the opportunity.
Brian Smith 1:03:14
Yeah, well, you know, it’s funny, as you say that cuz I talk about this stuff all the time. And I was I was with someone the other day, and I was telling him I was getting ready to do I did a past life regression, like Saturday. And I just I just said, like, you know, I’m doing this, my wife looks at me. And she goes, Yeah, we’re in looks at him. Because we’re into this really weird stuff down. I’m like, Yeah, I forgotten. Everybody believes this. But you know, the world that I live in,
that’s so fun. Well, I mean, I’ve done a lot of those things. And I did a soul soul retrieval one. So all those things, I think, are really helpful. I mean, I don’t know I find them more like therapeutic than anything. So I love them.
Brian Smith 1:03:53
Yeah, well, you know, death is. Death is just another part of life. As I said, at the very beginning, if you’re born, there’s 100% chance that you’re going to die. So we might as well face that and the people that we’re with, you know, when we get when we get married, I was talking with someone the other day, she’s a long, long term relationship. And her her beloved aunt passed away. And she says, We were supposed to go together. I said, Do you know how often that happens? But that’s not the way it goes. We don’t we don’t go together. When we get married. One of us is going to be with that the other one. And unless, you know, anyway, we won’t go there. But yeah, that’s we all we all go through. We all go through grief, we all go through loss, you know, one way or the other. So let’s just get prepared for it.
Yeah, let’s get kind of tried to get on board with it and make it as smooth as possible and support each other, you know, through the process, because we’re all going to need it at some point.
Brian Smith 1:04:47
Yeah, exactly. Well, Beth, have a great rest of your day. Thanks so much. You too, Brian. I appreciate you. Bye. So that does it for another episode of grief to growth. I sure hope you enjoyed it. If you like this content Make sure you subscribe, so click on the subscribe button here, and then click on the bell to receive notifications and click on all. That way you’ll be notified whenever I release new content. Thanks for watching and have a great day.
Transcribed by https://otter.ai
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