#121 The Heart of Hospice and Best Life Best Death in Conversation

This week: a joint podcast with The Heart of Hospice and host Helen Bauer! I think you’ll enjoy this swift-talking, wide-ranging, longer-than-usual chat.

  • What brought me into end of life work?
  • Why might any of us want a “supported death”?
  • How can end-of-life workers bring an open mind to any death?
  • How can caregivers be held, metaphorically and literally?
  • What can we learn while in a relationship with hospice?
  • How can we hold expectation vs hope?
  • How do we support the multiple needs of various people involved in caregiving?
  • At the end of life, how do you begin to let go of the bonds of the world?

*Bonus trivia: What’s Diane’s end-of-life playlist?

Listen to the podcast here: theheartofhospice@libsyn.com

Transcript:

Helen Bauer: Diane, it’s great to have you on the show. Welcome. 

Diane Hullet: Thanks, Helen. I’m so happy to be here. 

Helen Bauer: We are talking podcaster to podcaster, which is one of my favorite things to do, absolutely. 

Diane Hullet: Same, it’s so great because I think, you know, the focus of both our podcasts is really just information, education, conversation.

Like, how do we get this topic of end of life and death more in the public eye, so to speak, or the public 

Helen Bauer: ear. Right. So we’ve got such a possibility for a robust conversation. I’m so excited. So just for my listeners to get to know you a little bit I’m going to ask you an icebreaker question that I didn’t send to you.

I always liked bringing this on guests. Love it? You might not love it. Who knows? Okay, so when you want to have a good cry, what’s your favorite, you know, sit in it in your pajamas when, you know, ugly cry mascara running movie? What movie do you like to 

Diane Hullet: watch? Well, I don’t know if there’s one specific movie, but I would say dog movies, right?

Anything where the dog dies. And in fact, my daughter found this great website called Does the Dog Die? And so whenever we start a movie and we realize there’s a dog in it, we go quickly to our resource of Does the Dog Die? So we know that we’re prepared for what’s going to happen in this dog movie. But dog movies always get me.

Helen Bauer: So on on the website, it tells you whether it’s going to be a tearjerker because the dog dies? 

Diane Hullet: Yes, it literally, you look up the name of the movie, like you Google, does the dog die? You type in old yeller and the answer will be yes, the dog dies and it describes the scene in which the dog dies. So it’s a big spoiler alert website, but if you need to know, you need to know.

Well, 

Helen Bauer: I think that’s super useful if you have a really, really tender spot for dogs or if your kids are going to be watching it. Because exactly. My older daughter. Yeah. She’s very, very crunchy on the outside. She’s a firefighter, but on the inside, she’s super tender and soft hearted, and especially for dogs.

And I remember she watched Lassie as a little girl and spent about 30 minutes. You know, in those movies, Lassie always dies, supposedly, and then comes back, you know, makes her way across the country for 300 miles and comes home. She probably cried for an hour when that stupid dog drowned. And then, of course, Lassie didn’t drown.

She’s just fine. But it was traumatic. Traumatic. 

Diane Hullet: Yes, I think my oldest daughter is the same and I think that might be why she found this website, Does the Dog Die, so that she could upend 

Helen Bauer: that. That’s really pretty smart. I don’t think that if I wanted to sit and cry that I would pick a movie where the dog dies.

Something sentimental might be good like the notebook or something like that. But when the dog dies, I 

Diane Hullet: don’t know. Well, you said, you said ugly crying. I’m just going right to it. I 

Helen Bauer: love it. I love it. That’s hilarious. I’ll have to remember that, that website. Well, we’re going to switch gears because now we’re going to be talking about the work that you do in end of life care and how you’re educating and supporting folks that are dealing with serious illness.

and of course everything we go back to is hospice. Tell me about your experiences with hospice that sort of drew you into the work that you’re doing these days. 

Diane Hullet: Yeah, absolutely, Helen. Good question. I mean, I think almost everyone in end of life work has some, something that has brought them there. And I think for me, it’s a little different than some people because often people had an experience that was negative around a death that didn’t go well or that was a sudden death.

And my experience is a little bit more almost like gentle than that. I feel like I’ve had eight older relatives all die basically at home with hospice. And as I was reflecting on this in preparation for our conversation, I was thinking, well, wait a minute, was that one really with hospice? Like maybe, maybe they hadn’t actually called hospice in that, but I guess I want to say that we’re all hospice like experiences.

In other words, somebody at home, In their own space with family and friends around and most of them supported by hospice, but so that’s sort of what I grew up thinking, even, you know, and by grow up, I mean, into my 40s and 50s thinking, you know, this is how death happens. And that isn’t how a lot of modern death happens.

A lot of current deaths happen in hospital settings, which is not always wrong. Sometimes that’s how it needs to happen. I, I try to get away from like good, bad, right, wrong. There’s no such thing as a, as a, as a death gone wrong, but I do think there are better supported deaths for the family and for the dying person.

So, you know, eight family members on hospice between my. my family and my husband’s family. That’s a lot of people to experience the care and support and community that is possible at the end of life. 

Helen Bauer: Yeah, that’s a nice big education to teach you what this could look like. So before we go further with it, I want to touch back on something you said, talking about, you know, how we like to assign good death versus bad death.

That’s become sort of a focus for me. It’s a little bit of a pet peeve because As a hospice nurse, my experience has been that end of life workers and professionals decide that they will assign what’s a good death to someone else, when I think maybe good death or bad death is not the way to, to describe it, maybe comfortable death.

Or an uncomfortable death because a lot of times what we think is a good death is not what that particular person would say is a good death for them. Really, the only good death we can define is our own. 

Diane Hullet: I think that’s really important. I think that’s such a piece of end of life work is can you check your own biases and can you check your own assumptions and be with what is.

And at the same time, I definitely have this little judgment in the back of my mind that supported and educated and conversationalized deaf is usually easier for the people who remain. So, you know, I don’t like to simplify that and call it good. But there’s something about how do we make, how do we make it go more smoothly?

How do we make it go more just peaceful for all involved? And I think that’s a key thing too. There’s the person who is going through the experience, but there’s a huge number of people. Or a few smaller numbers of people around them who are often experiencing the death as well. So how can that go more peacefully, more smoothly for who’s in the room, for who’s flying in from out of state, for who’s been there for the last six months of perhaps difficult treatment.

I think every death is so individual. And so to me, it’s not about these adjectives of good or bad, but it’s more, what do we come away from the experience with? And there are people who come away feeling like it was a transformational experience for them in a positive way. And there are people who come away saying that was hugely traumatic and I’m, I’m wrecked by the way that death went.

Well, we 

Helen Bauer: know, Knowledge is power. People feel empowered and comfortable, and they gain strength from understanding what’s happening, and that’s where end of life workers and doulas and educators come in you know, end of life guides. When we bring these biases in that say, morphine is what you should be, I think that’s what we get into is, I know what you should be doing.

Right? You know, I, I know that you should be using morphine to manage it. Well, except for the fact that the patients had 20 years of sobriety. And for them, that’s right. That’s a huge, a huge life thing for them. Right. Right. We’re, we come into such a small season of where they are most of the time in their, their lifetimes and their disease trajectory.

I think we have a tendency to impose, right? We know better. We’ve seen a few things, so we know a few things, and we know what you ought to be doing. It’s not a great attitude. Yeah, 

Diane Hullet: there’s a real skill to coming into a situation where you, you really don’t know the players at all, and almost like opening up your mind and ears and eyes and heart to just take in what’s there, and see how you can be an add to that situation, not a I have the right idea.

I have the right toolbox. I have what you need. More like, I have a toolbox with a few things in it that might be helpful in this situation, but helpful, quote unquote, can look like a lot of different things. 

Helen Bauer: So if we come in there with this attitude of being open minded, you also have to embrace the fact that we’re not there to fix everything.

Oh, nurses are fixers. We are fixers. Absolutely. That’s the way we’re trained and I had 15 years of nursing before I even came into hospice nursing. So when I first sat, you know, with someone who was dying, I’m like, okay, here’s the list of problems. And here are the things I know how to do to correct that, to fix it, to heal that.

And of course, that’s not the place for it. Yeah, 

Diane Hullet: I think there’s, there’s also something lovely about, you know, I think about my mother in law. My mother in law was in some ways, like I used to joke, she was like this amazing woman born in Oklahoma. Spent a lot of years in Connecticut, then went back to Texas, and so I always kind of chuckle that she felt very southern to me, and I feel I’m very northern, so I often could not comprehend her, like, nuances or implications, and, you know, so in some ways I want to say she was very wise and kind of knew what she wanted often, but there was also this incredible openness to her.

And what I saw when my father in law was at the end of his life, and she really had this sense like hospice, I think would help us. And so she reached out to hospice and probably that was in conjunction with a doctor. I don’t remember the exact details, but she was one of those people who was really open to everything hospice had to offer.

So they were like, well, do you want the social worker to come? She was like, sure. They’re like, how about a chaplain visit? She was sure. And so she looked at those relationships with the hospice people and figured out what they could teach her and what they, what she could learn from them rather than immediately saying, no, I don’t need that.

Or that’s not relevant to our situation. And I learned a lot from that. Open quality of like it’s like she didn’t have expectation as much as she had sort of hope for what that relationship could be. And that hope was different than hope for cure, hope for, you know, treatment. It was at that point just hope for management of symptoms, hope for comfort, hope for simplicity.

In her case, hope for someone to help him bathe and those kinds of things that she couldn’t do for him, a bigger, a bigger man. And so I saw this. This I watched her have this kind of ability to be open to what was presented to her and then take what was helpful. And I often think of that as a model for how, how can we learn when, you know, she was thrown into this situation too.

She didn’t exactly know what hospice could offer or what she could gain from it, but she knew it was a place of not a place. She knew it was a relationship of hope and possibility and support. 

Helen Bauer: Yeah. It’s expectancy versus expectation. Okay. Exactly. Well, and, you know, we don’t talk about it a whole lot coming from the patient and the caregiver perspective, but when it comes to bias, there’s a lot of bias coming from the patient and the caregiver.

They don’t understand who we are. They have, they have sort of assigned the roles of end of life workers. They know exactly who they want and don’t want based on who they believe we are. Without getting to know us. So we step into that as end of life workers. Same thing for doulas or conscious dying educators and guides and things like that.

Anybody who works in end of life care, they sort of either don’t have any idea what we do, like chaplains, so we say no. Or, like you’re saying, they think the role isn’t relevant. Exactly. The help that they could provide isn’t relevant. We don’t need that. Exactly. We don’t need a social worker, right? We, we don’t need Medicaid, so we don’t need a social worker.

Diane Hullet: Right. And I try to encourage people like, just take the resources and see what’s there, have the conversation, see what they can offer. Because sometimes there’s a personality click there that really works. And in our case, in that situation, it really was this hospice chaplain. We weren’t a highly religious family.

Donna grew up attending a church, but this hospice chaplain, which I might’ve said, Oh no, we don’t need a meeting with the chaplain. She turned out to be absolutely key in supporting both my in laws And my husband and I and our young daughter kind of in just the context of what was happening and the, the spirituality of what was happening, the spirit base.

And she ended up being a big part of the memorial service for my father in law and she was just lovely. And we never would have known that we never would have known how she would. help us hold the situation. And sometimes I think that word hold is really key. You know, it sounds kind of woo woo, but it really is.

When you’re a caregiver, you need help metaphorically and literally holding the situation. And I think that’s what hospice does so beautifully. Whatever the role of the person, there’s a level of holding that matters to the caregivers and to the dying. 

Helen Bauer: In addition to all the interventions that we do, you know, the applications and the financial help, if there’s a need for that, or rituals, or connections with community clergy that the chaplain might provide, there’s also Hope Basic stuff that, that all of the disciplines should be doing when you, you know, anybody who works on an end of life team.

Compassion, and hope, and education, and support, and guidance, and companioning. And that’s what you’re talking about. Supporting hope, and having presence, and holding space, recognizing this event for what it is, for its sacredness, and its intimacy, and its impact and the intensity it can have for caregivers and family members.

You know, those are the basics of what every discipline in hospice should be doing. 

Diane Hullet: Absolutely. Those are such good words for it. The intensity and the impact, the transition, the power of this transition. I think that’s where I feel like, you know, the conversation with, with the public that’s possible is really talking about those things.

And that’s why I don’t find this work. You know, you probably have this too. People sometimes say to me, Oh, isn’t that dark or isn’t that kind of depressing or morbid? Yeah, not at all. It’s so beautiful. It’s so illuminating. It’s the best of humanity because it has to do with this compassion and love and these spaces that people are able to go with this huge, huge transition point of death.

So to somehow bring that out of this, you know, this cultural arm’s length that we would like to have around 

Helen Bauer: Right. I will say, sometimes I think those of us who work in a death positive, you know, the death industry, because that’s what it is. The Death Arena, that sometimes we have a tendency to paint it as this beautiful, you know, experience.

It’s not like that for everyone, and it’s not like that for people all the time. Because sometimes it’s messy, and it’s hard, and there’s always grief. And people have different ways of coping and even people who work in the space may have difficulty coping. So well put. Yeah, so we don’t, we, we don’t wanna act like it’s just, you know, Michael Landon on Highway to Heaven, , you know, there are times it’s just messy.

Diane Hullet: Right, it isn’t like bringing a few candles in the chaplain and it’s all beautiful, like it’s not that at all. We’re all going to hold 

Helen Bauer: hands. 

Diane Hullet: Probably not in most families, but there’s this realness to it that has the capacity for authenticity, an overused word, but like authentic connection, real truth.

You know, I love the kind of idea of the four things that matter most, you know, I love you. I forgive you. Please forgive me. Goodbye. I mean, these are so important. And I think our, our society at this time has kind of lost sight of the power of those things and their, their basic human connections. 

Helen Bauer: Yeah.

The simplicity of that, to me, I think that’s where the beauty of it is found in the simplicity. Because when you take a medicalized death in the hospital, again, Not saying whether it’s a right or wrong thing. Some people choose to die in the hospital because that feels like a safer space for them.

That’s fine. I get it. But to acknowledge these small things in their simplicity, some stillness, some familiar items, you know, a pet. A grandchild, music, in your own space, things like that, I think those are the things that contribute to the beauty of it. It’s harder to me, it’s harder to find the beauty in a medicalized death inside a hospital room.

Yeah. 

Diane Hullet: And I think there are, there are people and families that manage to find beauty even there. And again, it’s in the very small spaces, you know, I think about the importance of smell. Like, you know, it’s funny, people often talk about an end of life playlist. And every time I kind of go into, you know, Diane, what’s your end of life playlist?

I always bump up against, I think it’s silence. Like for me, it’s silence rather than particular music. And, and then, but then I think about the importance of smells and I think, boy, if I were in the hospital, I sure would like a different smell, right? Like whether it was incense or some lavender or some tiger lilies, I don’t know what it would be, but smell would matter a lot to me.

Whereas music, I’m like, I think I would just want silence in the simplicity of that. But most people love, you know, have like. The idea of what music they’d love to hear if they were at the end. So it’s just interesting. Everybody’s a little different. And, and what I always say to people is like, so find yours, like yours is unique.

And this doesn’t have to be a, you know, some kind of tragic thing to sit with. How do you sit with it with some curiosity and interest about who you are and what matters to you? Yeah, 

Helen Bauer: to lean into it. I never thought about that. We talk about music all the time at end of life, right? Have a playlist or whatever seems uplifting to you, sacred or secular, it doesn’t make any difference.

But okay, for someone who, who enjoys the stillness. To have that quiet and then so engage the other senses and you can do that, it’s it can be tacit, right? Because you don’t have to have a playlist, you don’t have to be looking up something on your phone, you don’t have to do any prep for it. So say you just brought a diffuser into the room, right?

And let’s face it, facilities don’t smell nice. No, they don’t. They smell like bleach and sick people. I mean, let’s just be honest, they don’t smell 

Diane Hullet: good. I think the sense of smell, whether it’s in illness or in end of life, is a really powerful one and may be underutilized. I don’t know, a lot of people also do carry, you know, little oils and things with them in their tool kit, but it’s something to consider.

What are your favorite smells? And, and you can sort of add that to your list of things. I know, you know, it’s funny. I was thinking, have I mentioned this to my spouse? Does my husband know that I probably want silence? Cause he’s a huge music person. He loves music. And so I know that for him, music would be important, but I do, I think about this, you know, in terms of, well, if I can’t speak for myself and say, Hey, turn that down, I should probably let someone know about the silence piece that I don’t think I’d mind silence.

Oh, I love it. 

Helen Bauer: So that’s really part of an advanced care plan, the enriched advanced care planning, right? Not your, your advanced directive that everybody signs and witnesses or a directive to physicians, but that advanced care planning conversation that you have with the people who are going to surround you.

Yeah, you better tell him he’s going to have Rod Stewart playing in the background. 

Diane Hullet: Yeah, exactly. Exactly. 

Helen Bauer: I love it. So what scent would you want to have? 

Diane Hullet: Well, I think for me, as I said, it’s about kind of these softer smells, quite a lot of silence. I mean, if I could plan it, I would be at home in my own space, right?

Right. Or maybe in a hospital bed that was somewhere more prominent in the house than a bedroom, one or the other. But I think for me, there’s something about, I, I have this sense that at the end of life, There’s a lot about pulling in and so for me, who’s fairly extroverted and likes to be out, there’s something about respecting and feeling in myself that energy of kind of pulling in and letting that be a piece of the letting go.

So I think that when I’m, when I talk to people, you know, what’s your, what’s your way of being with those you want to be with, but what’s also your way of. Pulling in and quieting, you know, at the end of life, we’re letting go of our bonds to this world. We’re letting go of food. We’re letting go of The, the ways we have known to be in this body and be in this world, and that is part of the transition.

So how, how for you, you know, everybody’s different. How do you begin to let go of those things? And maybe some of it is for some immersion in them, but at some point it’s a pulling in. It’s a more sleeping. It’s a more quieting. It’s the body beginning to stop its physical time here. Yeah. And, and what does any one of us want for that?

Helen Bauer: It, less conversation, less socialization. I call it turning inward. 

Diane Hullet: Yes. Yes. 

Helen Bauer: Exactly. Maybe it’s inward reflection. And it’s hard to tell because I know that with a lot of patients I’ve worked with, they display that behavior, but it’s just innate to who they are as a human being. As the spirit begins to, to move, it’s always been my experience that the mind and the spirit seem to move ahead of the body.

That’s why we find end of life visioning when people are actively dying. The body’s still working to shut its systems down, but the mind and the spirit are going other places, so they are seeing people that they have not seen. You know, in years, they are visioning other things. There’s, end of life is so complicated and, and complex, it’s, it’s amazing that we even get to witness this stuff.

Diane Hullet: It is amazing. I think it’s really amazing. And of course, a lot of my work is about really upstream from that, like upstream of the actual dying time. How do we have conversations about it? How do we begin to think about it? And that impacts the way it rolls out, however it rolls out. So I love this possibility of You know, opening it up for people as a genuine thing.

I had one podcast conversation with Jade Adgate, and Jade and I talked about books. We had this great conversation about books, and she said, I think books are the first real way that people can begin to think about end of life, because almost any book you read, novel, has, has some kind of relationship to death in it.

Some character dies, something happens, sometimes it’s a main part of the story, sometimes it’s not. So she said, you know, whatever you’re reading, take a look at how death shows up in that book. And then she said, and if you’re, if that’s an interesting introduction, then begin to actively go towards a book that is actually about a death, an important character dies, a key thing happens around a death in the book.

And she said, you know, there’s so many books like that. And she said, that can all be before you actually read a book. A book like When Breath Becomes Air, or gosh, what’s another classic one? You know, The Art of Dying Well, like a book that’s actually about dying. Or Amy Bloom’s book, In Love. I mean, those tackle death directly.

But even before the directness, there’s a lot of opportunity to explore death and watch your own relationship to it as you read the book. And I thought that was such a great, gentle way to say to people, It’s okay to think about this. You’re thinking about it anyway. And, and a book is more of a gentle introduction than what we see in the media, right?

I just saw a great article just the other day that said most of the deaths we see are violent deaths that we see on TV. Yes. And did you see that too? I did. And how, and how inaccurate that is. That most deaths are not 

Helen Bauer: what we see. No, no. 

Diane Hullet: Yeah. So there’s something about we take in through our society’s kind of cultural images and media.

We take in a lot of violent deaths. And of course, in the news, that’s a whole other piece. But how do we take in death as a more natural human experience? And one of the ways is through reading about it. And that I think is a great way for people who are on the fringe. They want to dip their toe in the water, but they’re a little scared to dip their toe in the water.

Right, 

Helen Bauer: right. It’s pretty intense. I never thought about almost every book. So, if you think about it, Little Women, spoiler alert, right? Little Women, Harry Potter, every fairy tale that’s ever been written, if you think about it, half of those characters were orphaned. At some 

Diane Hullet: point? Yes, always. Yeah. The mother dies.

Yeah, stepmother, you know. The mother dies. 

Helen Bauer: Yep. Yeah. I never thought 

Diane Hullet: about that. No, it’s really, it’s really powerful when you begin to kind of notice and and sort of see how that impacts people’s experience in the book and in real, and in autobiographies too. I read a lot of autobiographies. It’s funny.

There was something, something happened maybe in the in the pandemic, where my mom and I were both like, life is stranger than fiction. Like, neither of us could read fiction at that time. We just started reading more and more nonfiction and autobiographies just because it felt, uh, again, life was so surreal for a while.

Yeah. 

Helen Bauer: Yeah. It’s funny. I stopped reading during the pandemic, almost completely. I don’t know why music, I also stopped listening to music during the pandemic. I don’t know. It impacted people so differently. It was such a strange thing for us. So you were talking about having advanced care plan, end of life conversations, having these upstream, oh my goodness, way upstream compared to what we, we actually do, but having these conversations.

So when you’re having discussions with your clients or colleagues about End of life and mortality. What challenges you the most personally? 

Diane Hullet: Well, I think that really ties back to where we started. Right, Helen? I think what challenges me most personally is dropping my agenda, dropping that I think I know.

Yeah. And then coupled with that is a challenge is how individual people are and how individual families are. But every family is this complex dynamic, right? It’s, it’s so beautiful, right? Because it’s like a yin yang thing. You’re dropping your own assumptions. You’re watching other people play out their assumptions and you’re just trying to make a little more space.

I think of it as like making a little more space for everything to just be present. So I think, yeah, that’s kind of a funny way to say it. But the challenge is my own piece and then other people’s piece and responding to what they bring and what they want. So not yeah, with my own agenda and biases, but really trying to listen to what it is people say they want and amplifying that for them.

Helen Bauer: Right. So not going in with the intention of thinking these people are wrong in the way they believe or what they think or what they want to do. So we’re going, it goes back to, I’m going to fix this. You know, they need fixing. Of course not everything needs to be fixed and we’re not in charge of fixing it.

But I think it’s difficult. It’s quite a fine. Tuned balancing act to make space, respectful space for each voice. You know, when you talk about family conferences or, you know, even when you’re just having, I still would call it a family conference, I guess, with a patient, a spouse and some Children to make sure that each of these people feel seen and heard in a conversation.

in respectful ways, and then you got to blend in whatever dysfunction or dynamic or conflict, because let’s face it, all of that is real. We can talk about the beauty of it, because there’s always the potential for beauty in these conversations, and meaning and connection. But there’s also a lot of crap that comes with it, because Death is messy.

Well, and I think 

Diane Hullet: it is, it’s, it’s death, it’s end of life, it’s aging, right? All of that is messy. And I think about how often, you know, these conversations with families are so multifaceted. It’s multi pronged, multifaceted. You’re really addressing multiple needs at the same time. So Often people are talking and they’re talking at a logical level without addressing the emotional level.

So like just a simple example is maybe an older person has fallen a couple of times and their kid flies in from out of state and is very concerned, mom, you know, we’ve got to get you to a safer place now you’ve got to move out. Well, okay. So. One level of that conversation is the logistics. How does the person, the older person, stay safe in their home?

Then underneath it is this huge emotional level for both people. The person who’s far away saying, this is difficult for me to not be able to help from far away. The person who wants to stay where they are feeling manipulated and pushed by this younger generation. And I’m making this story simple, right?

Like, these are, these are so much more complicated. Oh, sure. Add two more kids, one who lives close by, add a step parent, you know, it’s just, it’s very complex. So, so I think we have to approach conversations like this. In our own families and for friends and all the generations involved, we have to approach them understanding that there are multiple needs in the conversation, that it won’t all get addressed in one conversation, that if we can help understand what’s underneath the initial resistance or the initial frustration, Then often addressing and hearing that emotional need can shift whatever needs to happen on the practical level, right?

So it’s very, it’s very nuanced and we have to look at all the different levels of input and levels of emotion that are happening at the same time that there’s some logistics happening. And, you know, I love, I had a podcast recently. Gosh, I guess it’s going to go up in January, but it’ll be a conversation where what we kind of said as we were talking is that elder care is episodic, right?

It’s almost never linear. It’s just episodic. Something happens and we react, right? Something happens and we have to do something, but what is it that we have to do? So I think about how do we set ourselves up? to be prepared for these episodes that come that allow us to have these multi leveled conversations that are successful for everyone so that there’s some win win.

Somebody doesn’t feel like they got everything taken away. Somebody else doesn’t feel like they can’t manage. It’s very hard. 

Helen Bauer: It is. The nuanced part of those conversations is just immense. It’s very complex. So say you address the logistics. Let’s find a safe place for mom to live. Okay, are you going to look at the psychosocial and emotional impact of that?

She’s going to be moving from a home that she’s been in for 50 years, maybe to another town where her husband may be buried where she’s living in that same town, but we want to move her out to where we are. We see younger people do this. I went through this with my mom about five or six years ago. My siblings and I began to push her and, you know, it’s funny now I feel.

guilty about what we did. We pushed her a little bit, and she didn’t want to do it, but the house was completely unsafe, and we knew with her mobility changes that it was only going to get worse, and so we were trying to be proactive, and we looked at the financial part of it. I don’t think we addressed the psychosocial and emotional impact of it for my mom.

We really didn’t. 

Diane Hullet: It’s difficult. It’s difficult, right? Because I think as the grown child, you don’t want to hear how unhappy they are about this because you’re trying to solve this logistical problem and this safety problem, which is a big emotional level, too. Right. I think there’s something really there’s something really important that we don’t do well, which is that we, and I would have to separate dementia and mental capacity out of this, right?

But we don’t do well with believing and knowing that elders have A huge right to their autonomy and they get to have that. It’s very difficult, especially as disparate as we are living all over. It’s very difficult. I think that the happiest family, I don’t know, that’s the phrase, but like the, the, the most empowered people I see when they’re older, they’ve made choices along the way.

that have made, they have made their own choices. They have downsized in their 60s. They have decided to move to a one story home or apartment in their 70s. So they have proactively chosen the change different than feeling like it was imposed on them. And, and it’s very difficult to do that. But I think what I see is that older people who make that choice are usually happier that they made it than the people who feel like it got made for them.

And maybe they were super tired and didn’t want to do it at 85. But by then, safety had become paramount. So these are complex things. I, you know, it’s easy to, at 58, look ahead and say, Oh, I won’t do that. But who knows what who knows what any one of us 

Helen Bauer: will do, right? Oh, no, I figure I’ll make all my own mistakes.

But those conversations. With my mom, and I have two siblings, and I live remotely about an hour and a half away, they live a lot closer, so they do a lot of the maintenance stuff with my mom, a lot of helping stuff. But it was the typical two story house, no personal living areas on the bottom floor, a bathroom she wasn’t going to be able to get in and out of, but with my mother there was a complete wall of unwillingness to accept That things were changing.

She was going to be incapable at some point, and we were more focused on the safety thing, the logistics of the safety. Forget about the stupid emotional impact. She had fallen so many times and we were told the next fall would be catastrophic. And here she was stubborn as a mule. And I’m like, this is ridiculous.

So hard. You know, we, we weren’t even guilty or anything at that point. We weren’t sad or, you know, worried about my mother’s emotional status. We were just pissed off because she was being so obstinate about it. 

Diane Hullet: Right. Oh, you’re just, your listeners are going, well, in my family, I mean, right. Everybody, I think everybody over 50, unless you had the difficulty of your parents dying young, you’re, you’re coping with this, you know, and they are.

at some age and still pretty capable, or they are at some age and less capable. And so, how do we do this? And, you know, more and more people are aging. I mean, demographically, this is going to get bigger and bigger. It’ll be interesting if we end up seeing more people who move in with their kids. And I wonder about, you know, some families do that really successfully, move mom in with them and have a good relationship and mom’s able to be with them the last.

year or six months or two years of their life. And sometimes that’s really powerful. Not everybody can can handle it on either generation or for multiple reasons. Oh yeah, it’s 

Helen Bauer: like my mom cannot live with this. My siblings and I are a little bit disrespectful. It’s kind of a coping mechanism. We love my mom and we make sure that she gets the very best of care and everything that she needs.

But we have a tendency, my brother will call when my mother’s been up to some shenanigan, and he’ll say, well, your mother did this. Yeah. And if she’s really been a mess, we will have a conversation, my brother and I, and we will say my sister’s name, your sister’s mother, you know, with this disclaimer, she doesn’t belong to me.

She’s got to be somebody else’s problem because she’s being a toot. 

Diane Hullet: Yeah, totally. Totally. That’s, I think I remember that with dogs. My mom would be like, well, your dog was a bad dog today. And I’m thinking I haven’t lived at home in 10 years. What do you 

Helen Bauer: mean? I did that with my kids. You know, my husband would come home and I’m like, your daughter did this and this and this today.

Yeah, I don’t. And it’s, maybe it’s a little bit of blame or shifting of responsibility, but we did try to empower my mother. in her decision making. And I think that’s the most important thing when you are having those end of life discussions. It really does have to be all about that person. You don’t have to like it, but you can respect it.

Diane Hullet: Yeah, I think it’s so important. I mean, the, you know, I, I try to do a lot of my work upstream, right? So my podcast is one way that I try to amplify these upstream conversations and encourage people to talk to their family members. And then you know, I teach classes. So I teach classes on zoom. I, I, you know, just because I started on zoom, I haven’t really switched to in person because I don’t know if we’re going back to the days of where people over 60 want to get in their car and drive to the church basement across town at night.

I don’t know. It’s pretty nice to just get a cup of tea and sign on zoom with Diane. So, so the classes I teach really take people through this kind of process and the experience of confronting. Aging and death. And it’s, it’s really something when we do that. And I find that the people who like that work the most, the quality that they share is that they are curious.

And I would say that curiosity goes a long way in life with possibilities at the end of life and for whatever crap life throws our way, curiosity about it is almost always the thing that will survive, help us survive it, you know? 

Helen Bauer: So tell me about your courses that you’re teaching, the best three months.

Diane Hullet: Well, Best Three Months is a curriculum founded by the Conscious Dying Institute, where I did my training, my doula and my coach training, and what I love about it is it’s very, I want to say it’s, it’s, it’s almost a little in your face. I mean, when I tell people about it, they’re a little shocked, but as I said, most people come into the class.

with some curiosity. And they find pretty quickly that this is more interesting to lean into than to lean away from. So in the very first class, what I, what I mean by in your face is in the very first class, I named the date that people in the class, all of us will be dead. And I like to frame it where I say, so 90 days from now, something will happen to us a day or two before a health event, an accident, something, and we will end up unable to speak for ourselves.

So, we’ve got to think through, in those 90 days, what matters most to you? And we, we break life down, and of course life doesn’t break down in these simple silos, but it does simplify it to help in these ways. So we, first we spend a week, usually I do this as a five week course. So we talk about the, these five areas of our lives.

We talk about the physical, our physical bodies. What’s working? What’s not working? What would we do differently if we knew we had only 90 days to live? We talk about our spiritual practices, our spiritual life. Where is that? Are we, are we comfortable with that? Is there anything we do different? Do we have any regrets that we want to change?

Again, you’ve got 90 days to change it. We talk about our emotional and our relationship life. And that really comes down to, are there any loose ends? Is there anything where you would be lying there knowing your body was not going to recover and you would think, Ugh, I wish I had reached out to so and so.

I wish I had written that letter. I, I feel terrible about this one relationship. Now, I will say that I always say, Non resolution is a kind of resolution. There are some relationships that you’re not going to write the letter because you have come to resolution in yourself that that relationship has ended or that emotional scar is there.

But there’s still some way that I find people when they really look at it. Those experiences that are emotionally difficult do change in some way when there’s this deadline of 90 days. Then, then we spend the fourth week, we talk about legacy projects. Is there anything that you want to do that you want to be sure you get done in these 90 days?

And people do all kinds of fascinating things from photo projects to making sure they make a list of who they’d like to have what of their special things. Or people write something. They write letters or they, they start a narrative about their life that they’ve been wanting to do. And finally, on the fifth week, we talk about kind of where you and I started.

We talk about this practical care at the end of life and after death care. What, how do you want to be in these final hours? How, what do you want to be surrounded by if you could choose it? And what do you choose for your after death care? And there’s so many interesting options now that not everybody knows about.

So, so my courses are about looking at these five areas of our lives with the knowledge that will be gone at the end of 90 days. And I think what I really love about the class is that what happens is that each person comes up with action steps in that area. In each of those five areas that they can do, and so there’s this real quality to it of being a kick in the butt, you know, because we all know, like, I’ll take a super simple example.

Someone might say, Oh, you know, I know I’ve got to get my advanced directive signed and my partner and I’ve been talking about it. We’ve got the paperwork a little bit done, but we haven’t quite finished it. And they might try to make an action step that says work on advanced directives. And I say, no, no, no, that is not specific enough.

Right, it’s too vague. What are you going to do? It’s too vague. It’s too big. You haven’t done it in two years. So then they might say, well, okay, I’m going to make an appointment with the attorney that we are going to have help us do this. And I say, no, no, no, too vague. What’s their phone number and when are you going to make that phone call?

Yeah. And so what I love is that very quickly in five weeks, people get a lot of Momentum is the word. People get a lot of momentum towards these projects that they would like to do, and it’s incredibly inspiring for people. I mean, it’s funny, people, I often have people say at the beginning of the class, you know, as we get started, throw some adjectives up in the chat about how you’re feeling.

And people will say, you know, nervous, excited, curious, curious, serious. Uncertain, even scared, you know, people are really unsure about how to unpack this. And by the end of the class, they say they’re motivated, they’re inspired, they feel more organized, they’ve got a roadmap for what they need to do, whether they’re gone in 90 days or, you know, 90, at 90 years old.

So there’s a, there’s a quality to it that I love because it is both this, experiential exercise and process of thinking, wow, 90 days, that’s not very long. And then it’s also this very action based, pragmatic experience of, okay, here are some things I can actually do to motivate myself and get some things going.

So, you know, that’s funny. I never thought about it quite this way, but it really, I think the reason I love it so much is that somehow embodies a lot of who I am. Like, I think I’m both sort of big picture, broad thinker, like, love that kind of big level. And then I’m also very, like, pragmatic. Like, okay, what have we not done that actually needs to get done and signed, you know?

And so there’s this quality to it that embodies kind of the best of me. And maybe that’s why I love teaching it so much. 

Helen Bauer: Well, that’s the kind of balance. you need when you have those conversations? Because we do have the pragmatic practical stuff that we have to take care of. Who’s your decision maker?

And do you have that in a legally documented form that’s acceptable in your state? Okay, that’s great. And have you had all these little nuanced conversations about the details with your decision maker? that incorporate mind, body, and spirit needs. Yeah. 

Diane Hullet: Absolutely. And would it be helpful to write a letter to your kids?

Now, I do think it’s interesting. Like, I’ll talk just for a second about what I think gets in the way for people, because I think it’s really interesting. What gets in the way of, you know, actually writing that letter to your child, or actually sitting down and having that conversation with your sister, or your spouse, or your best friend.

And I think there’s a couple things. Like, number one is, I think people, We are in denial. You know, we, we don’t wanna face this. It feels really scary to people for a variety of reasons. We have fear around frailty and aging and death and all of it. Sure. And people have different fears. That’s a whole other podcast.

Right. But secondly, and, and close to that denial is, is indecision. You know, you say, well, I have two children. Who do I want to have be my health care proxy? Gosh, which one of them? Is it both of them? Is it one of them? Is it my partner or my kid? So we get in this place of we just can’t quite decide. And then I think that’s closely tied to what I see as the third problem, which is maybe just my problem, but I bet some of you out there have the same problem.

which is perfectionism, right? Like, well, if I can’t decide and I can’t make it perfect, then I better just do nothing at all. And what I always say is it is better to put one person down as your decision maker and talk to everybody about it. It does not matter if they are perfect. It’s better than nobody.

So just make the decision, you know, the letter you want to write to your brother who you adore and you want to pour your heart out to him on the page in case something happens to you, just write the letter. It doesn’t have to be on a certain date with a certain number of letters. points that you would touch about what your relationship has been, just start writing, just start writing.

And then if you don’t like the letter, tear it up in three months and write another letter. Like it doesn’t matter. So I think that wanting it to be perfect, wanting the timing to be right, often stops us from getting these things 

Helen Bauer: done. Oh, and I think that that is probably what a lot of people who work in end of life care deal with.

That it has to look a certain way. We know what it can be in its fullness if it’s rich and robust and wonderful, right? So we want all the things. I want, I want the perfect decision maker who will do exactly what I want, right? And then all these other things. I want to have all the conversations. When in reality.

You may wanna have conversations that people don’t wanna have with you. 

Diane Hullet: Yeah, yeah. And so how do we hold that? How do we hold that, that imperfect humanness that we all bring, whatever our role, whether we’re the end of life person, we’re the family member, we’re the close family member or the distant family member, or the dear friend who’s trying to figure out their role amidst the family members, or were the hospice worker, or the hospice chaplain or the attending physician.

all these roles, and all of us are imperfect humans. So how do we bring our humility and our sort of belief in humanity and our hope for the best to this messy, messy, complicated situation? 

Helen Bauer: Yeah. So Diane, how can listeners find your class, read what you’re doing, connect with you on social media? 

Diane Hullet: Well, you can find out all about me on my website, which is bestlifebestdeath.

com. And I’m on all kinds of social media, at bestlifebestdeath. But what I think is sort of funny about all of this is, I would say that three or four years ago, I didn’t even want to have a website. You know, I was like, Oh, I’m one of those people. I’m not on Facebook. I’m not on any of that stuff. Midlife at 58, well, a few years ago now, so at 55, all of a sudden I launched into this kind of tech level, right, with a website and Instagram and all this stuff, and I just find it so innervating, is that a word?

Energizing, that we can still learn things, you know, I feel like I’m the perfect example that you can teach a Middle aged dog new tricks because I’ve had to learn things in technology that I just never thought I had the interest or time for. And instead I found it really fun. It’s incredible to reach out to people and feel that you know, that podcast episode or that perfect, beautiful quote that I put up as a post, touch somebody’s heart on Facebook and they reach out and tell me what it meant to them.

So I, I found it to be really exciting. So I love it when people reach out, you can email me or find me on the website. And that’s where all my information is. That’s perfect. How do we find out about you? 

Helen Bauer: The heart of hospice. com, of course, social media, Instagram, Facebook, even on LinkedIn, and the podcast is on all the, the typical platforms.

So you can reach out pretty much anywhere and find it. 

Diane Hullet: Love it. Love it. And mine too. I love it. We’re planning on kind of popping this up as a joint podcast release the same week. So I think that’s going to be really neat, Helen. Thank you so much for the conversation and your time and all that you do to make this conversation wider.

Helen Bauer: thank you. Right back at you.

Diane Hullet

Diane Hullet

End of Life Doula, Podcaster, and founder of Best Life Best Death.