Episode Transcript
[00:00:07] Speaker A: Put on a happy face.
And my brother is the one on a very happy face.
Somewhere over the rainbow skies are blue. You.
[00:00:32] Speaker B: And welcome back to a podcast called if It's Not One Thing, It's Joanna, where we talk about our journey with our mom's dementia. We do it in three parts with every episode, starting with a little intro to the topic we're talking about and how we dealt with it with our mom and our experience.
Then we bring on an expert or just a good buddy to talk about their experience.
[00:00:58] Speaker C: Sometimes the good buddy is the expert.
[00:01:00] Speaker B: Correct.
Those do overlap. And then we close it up with some takeaways. Intermixed is some lovely music from mom as she's still in the recording studio. We'll be releasing an album at some point, if they still call it albums. I don't know if that's what the kids say these days, but that will be.
[00:01:20] Speaker C: I think record albums are making a comeback. So maybe we. We actually release it on an lp. Be very excited with artwork and the whole deal.
[00:01:29] Speaker B: Yeah, no, that's coming.
[00:01:31] Speaker C: Liner notes, the whole story.
[00:01:34] Speaker B: And we're in the middle of a wonderful death spiral, if I may say, with our micro death series, our micro series on death and dying and preparing for that in different ways and different angles. And we were overjoyed to talk with Jodi from Kaufman about pre planning funerals. And today, Karen, who do we.
[00:01:59] Speaker C: Oh, my gosh. We are so fortunate that we have Bea, also known as Brandy, but she likes to go by Bea Carlin. And Bea and I met. Well, I'm going to start off with a little. Even I'm going to go a little farther back than this.
So I often, you know, I take mom off your hands on Sundays. I try to get her out of the house. So you have the house to yourself and try to go on different adventures. We've talked about the dog park. Like to go for walks, but sometimes we go to Crispelli's Bread Bakery on Main street in Rwanda, which is. Oh, my gosh, I mean, that bakery. That's a bakery.
And so I'll bring mom in and we'll get a cookie and sit, you know, on nice day, sit outside in their little seating area and enjoy a little treat.
So a couple weeks ago I was in there and I was chatting with one of the guys. Oh, here's the other thing. Everyone there thinks mom is adorable and they usually give her an extra cookie. So I'm like, I'm not gonna say no to that. They're all amazing. So anyway, I was chatting with one of the guys behind the count.
And we were talking about mom and how we have this podcast and we chronicle her journey.
And out of nowhere he says, oh, that's interesting. I have a friend whose parent just passed away after a long Alzheimer's journey and they used a death doula to help them with the process. And I thought, I am certainly aware of a birth doula, but I had never heard of a death doula. So of course I said, tell me more. And he started talking to me about their experience.
And then I don't know how this topic came up. But you know, I have my four and a half hour a week Friday morning job at Citizen Yoga where I man, I woman the front desk and check people in and do my. My little job there, which is pure delight. And there is an instructor there who I have not taken her classes. She mostly teaches at the Detroit studio, but she practices there. So I see her almost every Friday morning at the 8:30 class. And her name is Bea Carlin. And for some reason I was chatting with another instructor, Satara, who I also adore, and she said, you know, Bea is a death doula. I don't even know how we got on that conversation. But sure enough, I looked her up and yes, indeed, Bea is a death doula. And so when I saw her next at yoga, I said, would you be willing to chat with us about what you do?
And she was thrilled to do so and also had listened to a couple of our episodes, which I really appreciated. So she kind of knew what she was getting herself into.
But the concept of a death doula was something I'd never heard of. And now all of a sudden it's kind of, you know, something I keep, you know, that's like our worldly algorithms. You hear about it all over the place, but what an interesting, fascinating job to do.
[00:04:50] Speaker B: Yeah. And usually we just kind of talk about our own experience and how we dealt with something like that with mom and then the expert comes on. But in this case, like our only experiences with dad and obviously we didn't have death doula back then.
What were we doing to try to figure out how to deal with death at that time? Was it just the rabbi and friends and family or the rehab or like.
[00:05:17] Speaker C: Yeah, no, I will tell you that.
Yeah, it was terrible. I mean, I remember it very specifically because, you know, he had had a lot of health issues and then he had a fall and that fall ended him up in the emergency room getting. I don't know, I think he got nine stitches, came home was still bleeding, needed a 10th stitch. By that time, he'd been in the emergency room for at least 10 hours. There he contracted pneumonia back into the hospital, you know, and now they're giving him all of these life saving measures, which really, I think that we weren't proactive enough to say, well, he has a dnr. I think when I discussed it with them, they said, well, if he had a dnr, you shouldn't have brought him to the hospital, because once you bring him, you're. We have to treat him. It was just a really. I was very lost in what we were supposed to be doing in that circumstance and ended up with a long hospital stay that was a disaster because he had dementia and health issues and got sundowner syndrome. And that led to him having to stay in rehab, where he was clearly not improving because his mind was so far gone at that time. And eventually mom and I made the decision that we were gonna bring him home with 24 hour care.
And I kind of had a thought that when we brought him home, he might do better because often, you know, we'd had experiences where he'd been in a hospital or rehab. And then once he got home and he was more settled, he would kind of come back to himself again. But this time he clearly wasn't.
And his doctor, his internist had said, you should call hospice. And I really envisioned hospice as we've got days left to go. I didn't know what I know about hospice now. Mom didn't either. She was very reluctant. But we finally did get hospice in, and they were lovely and, you know, really very specific when it came time to, you know, when it came near the end, they were acutely aware, having done this so many times, that he didn't have long to go. And we knew you were living in, I think, were you in Beijing or Shanghai?
[00:07:19] Speaker B: I was in Beijing at the time.
[00:07:21] Speaker C: Yeah. 2011. Yeah. So we had to get you home. So she said, it'll be 72 to 96 hours. You need to get your brother on a flight.
But really, you know, they tell you what to do and they drop off morphine to keep them comfortable, but you are really responsible for kind of making the big decisions. And we had the caregivers there, and we knew we needed to keep him comfortable, but we were really at a loss of, you know, well, am I giving him the right amount? Should I be giving him more?
Should we be sitting by him, you know, 24, 7?
I didn't. I mean, should I go to work?
I didn't know what to do. And sure enough, I did end up leaving mom with him that night.
I went to school, I was teaching the next morning and got the call when I was teaching that those hospice nurses were right on in terms of how much time he had left. But I really felt very worried about making the wrong moves, making the wrong decisions. And now knowing this concept that we could have had this death doula with us just to guide us.
I don't know, I feel like what an incredible concept.
[00:08:29] Speaker B: Oh, yeah, absolutely. And by the way, again, thank you for being on the ground to deal with all that. Obviously I was not dealing. I mean, I'd come in for a pre trip. I think it was just a couple months prior because we knew the end was approaching. Yeah. And by the way, again, I did not feel. Just so you know, I think I expressed this at the time, but I didn't feel bad that I missed the moment. Like I was, I. I don't want to say happy, but I wasn't, I wasn't upset that I wasn't there for the last moment.
And I will just say one thing. Like, I remember when. So the last time I saw him was at the funeral when you could go in before the service started and the casket was half open. And that's the first time I'd seen him since I had come back. And I remember and I. Sorry if this is too morbid for people, but like, I didn't know that this is another thing that Doula might have told me. I didn't know that this is what you're experience when you go to touch him for the last time. And I went to touch his forehead and it was really cold because that's what happens to the body when the blood, you know, goes out and the temperature drops. And I was, I was really shocked at that sensation. Like I wasn't prepared for that.
And so anybody who's, who's going to do that, just, just to let you know, if you've never done that, that's what you're going to experience. And, and of course it would have been great to have someone to just quarterbacking from a holistic approach all these different things that you don't know about and that again, just similar. And she's a therapist. Similar to a therapist, like just a sense check, you know, that you're doing the right things and that you're thinking about the right things. And yeah, this is something that I hope becomes more of a thing. And I can't wait to hear more from Bea about what it is and how she can help people. So without further ado, let's talk to Bea in a second. But first, of course, here's mom.
[00:10:50] Speaker A: See the moon at light.
Gonna have a mother runner. Wonder. Wonder what will be tonight.
[00:11:08] Speaker B: Because we just like to do a rolling start. You never know what may come up in the pre banter session.
[00:11:13] Speaker D: Yeah.
[00:11:15] Speaker B: But yeah, I love the studio. We're talking yoga folks and I miss being in the studio. Karen was kind enough to get me a five pass holiday special or something.
[00:11:25] Speaker C: The Best of Detroit Special.
[00:11:27] Speaker B: Yeah, that and I enjoyed that fully and it was nice to be back in the studio. I mean I do the on demand subscription, but there's nothing like that physical community. You know, being in the room and that energy and all of it is, is obviously the best way to do it.
[00:11:41] Speaker D: Oh yeah. Makes a big difference being in a shared space with people, breathing together.
I know sometimes if left to my own devices, I might not, you know, my attention might wander. So it's nice to be in a room where I don't really have that option. They tell me to move my foot here, I move my foot there. Sounds great.
[00:11:58] Speaker C: Exactly. And I also just like the idea that you are so focused on somebody when you're in class. And I think maybe this comes from the fact that I'm now a retired teacher. The joy of being in that class and just listening to somebody's directions and even sometimes having micromanaged directions, but I'm not the one giving the directions, just listening. It's joy for me. I. It's funny because people will say, oh, why aren't you going through teacher training? And I feel like, Well, I did 30 plus years of teaching in schools. I think it's time for me to just be the student. And it's, it's a fabulous feeling.
[00:12:33] Speaker D: Yes. Yeah, absolutely. I mean it's fair to say I've told people enough stuff to do. But even as, as a yoga teacher, I love going to classes and one just getting to be the student, but also that exact thing. It's not up to me what we're doing. I don't have to think about it, I don't have to worry about it. It's somebody else guides the way and I've just gotta be in the moment with it. And that is really freeing. That's really nice.
[00:12:59] Speaker B: All right, well, let's get into it. There's so many interesting spiritual, holistic, however you'd like to describe it, things that you do, the reason primarily that you're on Today is to discuss this incredible genre, can I call it, of death doula, which I had not heard of before. I actually do have a friend shout out to Amy Owen, who's a birth doula. That's the first time I even heard the word doula. And knowing just a little bit about what she does, I can only guess that there's huge value to what you do. But why don't I let you introduce yourself and all the different things you do and, and maybe tell us a little bit how you got into the death stuff.
[00:13:36] Speaker D: Sure, yeah.
How did I get it? I'm human. That's how I got into the death stuff.
[00:13:42] Speaker B: Like to keep it light here.
[00:13:44] Speaker D: I mean, hey, I spent a lot of time talking about death. So I'm right there with you.
[00:13:48] Speaker B: There you go.
[00:13:49] Speaker D: Let's see, what, what do I do? I do many things. I'm a therapist. That's my, my primary thing. I specialize in trauma and grief and anxiety.
I've worked with all ages. I started my career working with kids and teenagers and then eventually started working with adults as well. And now I work solely with adults. I joke that I've kind of just moved my way along the life spectrum as I've gotten older. I went from, you know, play therapy to now a lot of later in life things. I teach yoga, I do those things for, because I enjoy it. And then I am also a death doula, which if you are most people are familiar with a birth doula, right. It's at least something many people have heard of. And birth doulas are, you know, they just work on the other end of the life spectrum. So we do similar things just like birth doulas who can have a wide range of things that they do. Right. They could be a be there for the birth, they can help in pre birth birth plans, advocacy, be there for the birth. You have postpartum doulas as well who help, you know, attend to the baby afterward, attend to mom, the family. Same thing with death doulas. We are a, it's a broad range and you can kind of find whatever area within there you like to do. We have people who do legacy work who do help people, plan, talk about death, talk about mortality, do education around death, end of life things.
Sometimes you'll hear, hear them referred to as end of life doulas. It's the same thing. It's personal preference, I think, as to what you're called. I prefer death doula because I see it as a part of helping people understand death isn't A bad word. Like we can say death and it's a thing. It exists in the world, it's part of life, and we don't have to tiptoe around it or use euphemisms or, you know. So I personally do a lot of deaf education. That is really my realm around, like, end of life, what that looks like, as well as I am open to. I have not yet sat with any clients at end of life, but that is something that I am open to and available for as well. When you do that, you're there to advocate talking with people about what do you want, what do you want it to look like? Where would you like to be, Little details, where do you want to be? What do you want the room to be? Like, do you want specific lighting, smells, sights? Who do you want there? Who do you not want there? Like, what does. Do you want music? Do you. What does, you know, what does the ideal setup look like for you? And how do I advocate for that and help make that happen? And then also I do a lot of grief work with people, a lot of anticipatory grief, but also then, you know, post death, grief, loss, things like that.
[00:16:42] Speaker B: So is. Are most of your clients or people you're helping, they get some information, but it's kind of off into the future. So they have this window of time where they have to come to terms with it and figure out what the plan is going to be and what they're going to do versus someone is dying actively and is probably going to be gone in the next few weeks. And then they call you to kind of like help you walk through the family through these final moments. Is it a mix of both or is it one more than the other?
[00:17:11] Speaker D: It's a mix of both. I get a lot of. I have a lot of conversations with people whose loved one is at end of life. And sometimes it's, we don't know, it could be a matter of days.
Sometimes it's, hey, this person has a terminal illness and we know that it's coming sooner rather than later. What does that mean? What does that look like? And then I also talk with people about their own mortality and about, I'm actually doing in October a death meditation.
So helping people kind of consider their own mortality and think about what that looks like.
[00:17:45] Speaker C: Even people who don't necessarily have an end of life diagnosis, like someone who might be healthy. And, you know, I think that's amazing. So people are having conversations about what they want for themselves, even if they're not facing that imminently yes.
[00:18:00] Speaker D: You know, as a friend of mine put it, we're all terminal. Some of us just faster than others. So I mean we all. It's going to be there at some point, right. As a part of life. We're all touched by it at some point. If you're lucky when you're young, you know, I'm saying lucky because it really is kind of luck of the draw. Some people don't experience the death of a close person until they are adults. Some people experience it when they're children and you know, it's kind of the price of being connected with other people, other beings, other creatures. I'm looking at my cat sitting over here. I mean we also work with people around like grief for pets and you know, any buddy or any little furry friend who has had deep meaning in our lives and that we have a connection with, it all impacts us. So our society in particular is not good about acknowledging that death is a thing.
[00:18:52] Speaker C: Agreed. I think anybody who's ever had a pet will acknowledge that that loss is equally as profound as any non pet family member. And that is really, it's interesting to think about. I really love the concept of having conversations about end of life and what your wishes are and also alleviating that decision making process for people who surround you. Not just because you want your own wishes met, but because it leaves nothing to chance for people to have to make quick decisions and wonder what it is that you would want. I mean, Andrew jokes that I travel a lot and when I leave I have my basically my death packet that I leave on my desk in my office with very specific instructions about everything. But recently I've added to it not just, you know, where my safe deposit box is or what my passwords are for my Delta Sky Miles. Andrew, just so you know, you get the Delta sky miles.
[00:19:46] Speaker B: I'm appreciate that.
[00:19:47] Speaker C: You're welcome. I work hard for those. But I want people to know what my wishes are. End of life. And I really value the idea that we are starting to embrace these conversations.
[00:19:58] Speaker D: Yeah, yeah.
[00:19:59] Speaker B: Well, also I, and also I assume that like there's some people that are just kind of freaked out about death because I mean they don't have an impending illness, they may not be elderly, but they just need to discuss what, what it is and how to come to terms with. I mean I've had good friends that are noticeably would not talk about the topic. Like whenever it tangentially came up you could tell they were uncomfortable and were, you know, just something that they wanted to keep away you know, and not even think about.
[00:20:28] Speaker D: People get very superstitious about it. Don't say it, don't talk about it. I can't talk to you about it. Because then it'll bring it on as though that, you know, it's lurking around a corner waiting to be invited into the room. That's right.
[00:20:39] Speaker C: Otherwise it would never happen. It just happens to be. You brought it up in conversation and now look, for sure, there it is. Yes.
I'm curious as to how your support differs from hospice care.
[00:20:50] Speaker D: So death doula is. Well, sometimes they're part of hospice. Now there are hospice programs that are hiring end of life death doulas to be a part of the team. But a death doula's job is non clinical. So we don't do any of the medical things, any of the hands on, even taking vitals things. That would be the nurses, if there's a social worker involved. Really your job as the doula is to help fill those other spaces and not step on toes. Like part of our scope of practice is really like, stay in your lane, know your space, you're there as support. As an advocate, you can help get resources. I mean, some doulas might be doing, like, very practical things. You want your favorite snack, you want a visit, you want somebody to spend some time with. But it is very much a matter of taking into consideration who else is involved and what does the team look like. And if somebody's on hospice and they have a team, you're there to compliment and to, you know, assist. Not to come in, have an opinion, give advice. You know what I mean? Step into those roles. Yeah.
[00:21:57] Speaker C: I will say that I remember when my father went into hospice care, and in the last one, I was really impressed with how clear they were about how much time they thought he had left. Obviously they had a lot of experience. I assume you probably do as well given your experiences. But the one piece that was really challenging, and I respect and understand it, but it was the nurse isn't coming in and putting morphine under someone's tongue. They're dropping the morphine off and saying to you when you feel it's time. I was a little overwhelmed with that experience of it, that they were there as kind of a support, but it was kind of in the background.
And when I look back on it, I think having a doula in the room and this is really kind of leads to. My next question is I needed that support. I don't know how much my dad needed that support. Other than that I wanted him to be as comfortable as possible. But it was a really challenging time for my mom and I standing over this bed, wondering, is it time to give this? And are we giving too much? And, you know, I felt a little lost in that world.
[00:23:01] Speaker D: Yeah, yeah. And that's absolutely. I mean, a death doula can be there for the person who's at end of life. Often they are there for the caretakers, for the caregivers, or the family as a whole, helping to navigate whatever that looks like. But for sure, I mean, caregivers need as much support as the. The person who's in the bed. So sometimes just having somebody else there who is like, yes, I hear you, I see you, and can be in that space with you can be very helpful.
[00:23:32] Speaker C: I would assume that your certification as a therapist allows you to do this, or is there a separate kind of certification that you need to be a death doula?
[00:23:42] Speaker D: Separate. So we have to be very careful. If you are what they call, like, multi qualified, I think is the word that I've seen for it. Like, if you have a license, you're a nurse, you're a social worker or whatever, you have to be very clear about what services you're providing.
So my work as a therapist informs. I mean, it's. I sit and hold space with people all the time, but I have to be very clear about this is what this service. I'm not there in a therapist capacity. I'm not there in a clinical regard. So they can inform each other. But you don't technically need a specific certification or licensure to be a death doula. There are.
There's a lot of conversation around what that means, what that looks like, a lot of awareness of. A lot of people do this kind of work because it is what they have learned along the way. And culturally, there's a lot of cultures where that is a norm or a part of things. I mean, end of life care was really technically pre, you know, funeral industry pre. All of that. That was family led.
That was. That was women's work. That's what a lot of the women in the household did. You cared for your loved ones, you tended to them when they passed, you tended to their body, you cared for them, you helped, you know, have a home funeral and did that whole thing.
So do we want to necessarily put a whole bunch of all of a sudden, you know, gates and guardrails around something that is cultural and human?
And where's the line for what we ask for? So that when people are looking to get that support, they know they're getting somebody who is ethical, professional, reliable. So you have, like, I am. I have a. I can never remember the word for it. I have a little badge from NEDA which is the National End of life Doula Association. Basically, they. You. You're not required to get it, but they have a proficiency exam that you take, and when you can demonstrate those. All of those essential things that they would expect of end of life workers, then you are considered NEDA proficient. And so because people do, like, pieces of paper and extra letters and things like that, it is a nice thing to be able to show people to say, hey, look, you know, I've. I've passed this. I'm considered proficient. But really, who is NITA versus anybody else? You know, decide.
[00:26:04] Speaker B: And do you remember any of, like, some of the questions on that test? Like, what are some of the things they ask you?
[00:26:09] Speaker D: I mean, they're the things. So I did take a training. I did an end of life fed doula training through the dying year, which is based out of Ann Arbor. And it was a wonderful training and really as all encompassing as you can be in, I don't know, 10, 12 weeks. But it covers a lot of the basic, you know, things that I, as a therapist, have already learned and had to be proficient at. So some of it was easier because. Yeah, how do I actively listen? How do you help provide support or advocate? But no, where your, you know, kind of where your boundaries are. How do you hold. How do you hold boundaries with clients? What is a professional boundary?
How do you suggest things? What is suggesting versus giving resources? How do you keep your own stuff out of it? You know, your own beliefs, your own religion, your own experience? How does it inform without hopping in the driver's seat?
[00:27:02] Speaker B: Do people ask you that when your clients are considering you, like, what your beliefs are and what your belief system is and what your religion is and those type of things? Is that important to people?
[00:27:12] Speaker D: It can be. It's not a question I get a whole lot. A lot of people are just, I think, just like, yeah, help, please.
[00:27:18] Speaker C: Right.
[00:27:19] Speaker D: It's certainly, certainly a question that comes up. And some people might prefer to have somebody who shares their religious belief or experience or things like that, which is a completely fair thing to ask as well. So if somebody asked, I would, you know, I would share that. And I would also emphasize that this, you know, my personal beliefs. Stay out of it. It's not my job to come in and say, here's what this means, or here's what this looks like. It's to be there with you and help you navigate.
[00:27:48] Speaker C: I'm thinking about a patient like my mom who has dementia, who. It's too late for her to share any of her wishes. Although we kind of had a. You know, it's not like we've had deep conversations about it, but we sort of have a general idea.
But I would imagine your support for a family like ours when the time comes is really for us. It's not really for my mom, who is actually living a very joyful, happy existence. I don't know when the time comes if she'll even understand what that phase looks like for her, but I would certainly. I mean, I would imagine you must work with people who are end stage Alzheimer's patients who are seeking some assistance. And really, it's tricky to navigate our decision making.
[00:28:30] Speaker D: Yeah, yeah. I mean, at that point, immutable, usually working with caregivers and helping them understand what does end of life look like or what is. Sometimes people will contact me and be like, is this. What does this mean? Is this normal? I get that question a lot about a lot of things. Is this normal? Yeah, it is. You know, there's so much that's part of the human experience and part of this that people just want reassurance that what they're experiencing is a normal thing or is something that other people experience and they're not kind of floating out in space all by themselves.
[00:29:01] Speaker B: Yeah. I remember actually one point during the. Near the end with dad where he was coming home from the rehab facility for the final furlong and he was visibly in very weak shape. And our housekeeper, who was there often and had been there for years when she saw him, which was already a very big decline from the last time she saw him, which was, I don't know, weeks prior.
And she just started crying. And he's there and he's not completely gone. And so I took her aside and I tried to console her and just urge her, like, obviously, if you have to cry, it's certainly understandable, but try not to do it around him because, like, if he's seeing that, I would just. I just. And I don't know if I was doing the right thing, but, like, I just felt like that might cause him pain. That isn't necessary. Like, is that something like, how did I do it, by the way, in that situation? And, like, I'm sure stuff like that must happen a lot. And it's hard to just not show your grief in front of the person that's. That's declining.
[00:30:07] Speaker D: Yeah. I mean, it's It's a fine line, right? It's. How do I express what this person means to me? And it's. Sometimes when people are at end of life, one of the complaints is, like, everybody's tiptoeing around it. Nobody's acknowledging that this is where I'm at. Like, they're aware. You're aware much of the time that this is where things are at. I'm. I live in my own body. I live in my own mind. I know that there's things happening. I know that you know things are progressing, or I know that I have a limited time. I always defer to, like, when in doubt, ask the person, hey, how do you feel about that? Do you want people. How do you want people to express around you? Does it make you feel uncomfortable for them to. To cry here with you? Would you prefer that they not do that right here? Does it help? Sometimes it's comforting. Sometimes it's alarming and uncomfortable. There's a big space, though, between, I'm sharing grief or I'm expressing what you mean to me and I'm making this about myself, which some people do. So, you know, it's important to keep an eye on that. If it's distressing, if it's visibly distressing for somebody to see other people cry in front of them, then you might want to say, hey, right now, that seems to really cause a lot of distress for him. I understand if you need to cry. Can we step out when that needs to happen? But I think pulling her aside and letting her know that is a fair thing to do.
[00:31:22] Speaker B: Yeah, I think it's also. And I don't know if you noticed this in the people who you see are actively dying, but it's very interesting how we automatically kind of get used to the situation and the life that we're in. Like, you're talking about my dad.
[00:31:36] Speaker D: New.
[00:31:37] Speaker B: He's obviously conscious of what. What's going on around him and where he's at in some ways. And, like, you know, when you're in your 20s, like, I can't believe. I can't believe I'll ever be 50. I'm gonna freak out. But then you turn 50 and you're like, this doesn't feel so bad. I don't feel that different than when I was 20. I'm totally fine. Yes. And I'm just wondering when people get to, like, the end when they die. Maybe some of those surviving mechanisms kick into place, like, so they're not so freaked out that this thing is happening. Like, is There something that I don't know exactly the question I'm asking. But, like, do you witness something within people where it seems like they are. There's some natural thing that's coming in that's helping them find peace and not have them completely freaked out about the fact that they're about to die?
[00:32:21] Speaker D: I've certainly seen that in folks that there is some peace. And, you know, there's some conventional wisdom that how we live is often how we die. If you have somebody who's very fearful about death, who very, you know, has a very hard time letting go or addressing it, then they may be very fearful at the end. I mean, we don't. It doesn't completely change who we are and what we address. Some people are in denial until the very end. But as far as the dying process, this is. This is part of why I think it's important for us to talk about these things. It's part of the reason why I do things like death meditations things to consider that. Because I think when we take the time to sit with it, to think about it, to address it, one. It makes life that much sweeter. Like, you're so much more aware of that. This is really kind of a miracle. Here I am. What are the odds of me existing? What are the odds of. Of, you know, me being here in this moment, in this time and appreciating those things? But there is also an aspect of what happens for us when we are dying that people start to Often, you know, they will start to kind of be. Reality will get a little slippery, you know. And I really watched this happen with my. My great grandmother, mybusha, who is actually the.
Her. The experience with her and her last year, but especially her last couple of weeks, is part of what sparked for me the interest in becoming a death doula. And she was. I watched her having conversations with people I couldn't see.
She was on the phone with her mom with a bunch of, you know, the aunties who she was close with.
She was mimicking, eating. She was having conversations. She was in and out. And sometimes she'd be very lucid and there with us and having direct conversation with us. And other times you could see she wasn't quite there. But, you know, at the time we had some hospice nurses that were visiting her who were so wonderful. Oh, my gosh. Worth their weight in gold. But they normalized all of these things for us. Hey, this is a common thing that happens. And you know, one of the nurses said, I see this happen a lot with People and it's, you know, they're preparing, they're preparing her to leave, they're getting her ready, they're nourishing, they're having conversations. She was calm and joyful. She had moments of agitation though. I mean there's where definitely some physical discomfort and things.
But I think there's some things that happen for folks who get to experience and I say get to because sometimes it is sudden, it is tragic. Like the things that we die from are not foreseen and happen so quickly. But when you get to go through that process, there's things that happen that we don't, I don't think any of us fully understand what's happening that are comforting, that are so it's not abnormal for people to be talking to people who are not in the room to be addressing something, to start talking about, you know, I'm packing for a trip, it's time for me to leave, it's time for me to go home. And in the moment it feels out of context, but it's really not. It's fitting with what they're experiencing. And that can be very comforting and very soothing for people. You know, I have, I have to imagine my boucha, as much as she loved my great grandfather, seeing him before she passed was probably an extreme comfort. Gossiping on the phone with, with you know, her sister in law who yes, they very much did that a lot when she was alive. You know, that had to feel, I imagine, pretty comforting. It was familiar. It was ah, this.
[00:35:58] Speaker B: I bet it did. And you know, my, our mom is having conversations all day long and I don't know exactly anything as specific like that. Like she's talking to her late husband or other family. But she's. There are conversations going on and it's not just sometimes she's just reading aloud, but oftentimes she is engaged in a conversation and that's when those, those times. And again, I've said this a million times on our podcast. I'm thankful that she has the sweet dementia and she is, is very kind and amiable these days. But like sometimes I feel like dementia is the defense mechanism that helps her cope with this transition toward one day death because she is in a blissful state right now, even though she's cognitively impaired. And it's, it's kind of sweet to watch sometimes, as sad as it can be.
[00:36:46] Speaker C: Yeah, I'm just gonna say that yesterday I had my mom with me for the afternoon and we went for a long walk, which means three houses to the corner and back, which is a long walk, but it's great. And she is obsessed now with seeing people and saying the way she says hi to them makes it sound like they're snubbing her. She'll yell across the street, hello, Even though that's their first point of contact. So, you know, it sounds like hello, but she's really like, hi. But I ended up bringing her over to my house. It was a beautiful day. I have a really lovely garden in my yard. And I thought, I'm just gonna bring her over. We're gonna sit there, we'll look through magazines. And my mom must have said 10 times yesterday, this is such a beautiful day. What my mom didn't know is that yesterday was September 7, which was the anniversary of her grandson, my nephew's passing.
And it was a hard day, but she had no knowledge of that. To her, it was beautiful and sunny and comforting and joyful. And I thought, that's what we're gonna just do today. We're just gonna embrace that kind of following her lovely lead. Not that I would have ever said, no, no, no, mom, it's not a beautiful day.
But there are pieces of this dementia world that I think she's so blissfully joyful and doesn't know what she doesn't know. And that sounds pretty nice. And I hope that that will be her ultimate end, that she stays in this state, happy and welcoming and thrilled to have people around her, because I think that's. It helps a lot.
[00:38:24] Speaker D: Yeah, yeah. You had a nice little capsule of exactly what it is to be human. It can be both heavy and beautiful all at once.
[00:38:32] Speaker C: Yeah. Yeah. Can you tell us a little bit about what happens during your time with the person for whom you're caring?
[00:38:39] Speaker D: Hmm. So, like I said, most of my current work with folks is in preparation for, especially with loved ones or grief work afterward.
So what that looks like is often a lot of gentle conversation. It is answering questions. It's having space for validating, normalizing what you're experiencing and all of the feelings that come with it. There's a lot of education around.
Again, what does that look like? There are some really wonderful resources. There's, you know the Little blue book that people get in hospice? It's authored by Barbara Carnes, who is a hospice nurse forever and ever and is just the most lovely, amazing soul. And she has made a whole series of little booklets that you can give for different occasions. And one of them, the blue one, is on, like, end of life. And what those last months, weeks, days, Hours look like. And I am a really big believer that knowledge is power. And having information can take some of the scariness away. It doesn't necessarily make it easy to navigate, but it takes away some of the fear about it. So there's a lot of time that I spend with people just talking them through what to expect or what might happen, because no one, you know, it's not a. It's not a checklist. And everybody goes, okay, they're here, and in an hour they'll be there. And, you know, but also giving people space to just cry, to laugh, to talk about things, to talk about their person, you know, both ahead of and afterward. A lot of times when I do grief work with people, the first things that I'm doing is just asking about the person that they've lost. Tell me about them, using their names, you know, acknowledging the ways that they're still with you. Because they might not physically be here, but we carry them forward with us in different ways. And depending on your belief system, that might look different, but we don't forget them. It's not like anybody dies, and then we just forget they ever existed. We carry them around with us. And what does that mean? And how do we carry them forward?
It's really common after somebody dies to have other people get. Get real weird about it and get real, because we don't know. We don't know how to handle grief. Right. We don't even know how to handle our own, let alone other people's. It's very uncomfortable, especially if you lose somebody in a way that was very unexpected. You know, I lost my youngest sister to suicide. And when you have something like, like that happen that is so emotionally charged and so difficult, people get so afraid of saying the wrong thing that they just won't say anything. And when you're in that experience, like, like it gets to be. That is even worse. I'd rather you say the wrong thing and be trying and being. Trying to connect than say nothing at all.
[00:41:27] Speaker C: Yes.
[00:41:27] Speaker D: So really make a point for people to, like, to talk about their person. Tell me about them. Tell me about, you know, what you love about them. Sometimes I make a point. Certain things. I make a point to use present tense. You still love them. You still love things about them. We don't have to put it all, you know, in the back end of the timeline there.
[00:41:43] Speaker C: Okay, this is a technical question, but I do feel like I need to ask this.
I. I don't imagine that your services are covered by insurance. So people, I assume this is an out of pocket expense that people are, you know, probably planning for. Maybe part of estate planning, for instance, or maybe something people should be estate planning for if they know that they want a doula with them. They just have to plan accordingly.
[00:42:08] Speaker D: Yeah, yeah. And you know, the, the cost is. Again, there's not. Because this is not exactly a standardized industry.
It is not. I don't even know if we should refer to it as an industry that feels a little institutional and yucky.
[00:42:23] Speaker C: Yeah, but community.
[00:42:24] Speaker D: Yes, the community.
[00:42:25] Speaker C: Yeah.
[00:42:26] Speaker D: Yes. It's really variable what it costs, who charges what? Some, some folks charge, you know, have a sliding scale. Some people have. They will do like, you know, okay, so you're asking for this kind of work for this many hours. So it would be this blanket cost.
Some people do the work pro bono there. And then of course, as with everything, there's conversations about what that means, what does that mean for other folks who are doing it, who are charging? And it gets very complicated. But most folks that I know work with a sliding scale or they have a very particular service that it is very spelled out. It is X amount of hours, it is X amount of work, and it costs this.
[00:43:04] Speaker B: But not to sound morbid, but I would also guess that the more tragic the death, the more work you have to do. And I don't know if you ever consider that, but like if somebody died peacefully in their sleep at 90, there's maybe it was a slowish trajectory, but there's less grief. And the grief is maybe less intense.
Is there. Do you find that there's different work that you have to do and also your own emotional, not sacrifice, but your commitment and the energy that you have to expend can vary wildly based on the circumstances around the death.
[00:43:41] Speaker D: Yeah, well, I don't find that it. The amount of grief or the amount of work depends on the death itself. It depends on the individual. You know, grief's one of those things we can't prescribe from the outside. I can't say, well, you should be grieving more, you should be grieving less. Or this person is. There's no formula. I joke with people's like, it's not the grieving Olympics. Nobody's getting a gold medal for grieving the most.
[00:44:04] Speaker C: Right, right.
[00:44:05] Speaker D: Or having the most tragic loss.
And sometimes when we are grieving, we can be. It can be really surprising what hits you and how it does something that we've been expecting to hit us really hard. Then when we, when that person dies, it doesn't feel like what we expected.
Sometimes it brings up old grief or past grief, and now we're just getting hit by a tsunami. So the amount of hours, you know, I would charge personally a sliding scale, but that is hours based. Unless we pre decide like, okay, I know I want to see you, you know, once a week for the next four weeks. Okay, we can do that as something that works. I personally have the privilege of. I, I'm a, I'm a therapist. I have a job, I have a practice. I have those things. So the work that I do in the, the death doula realm is again, because it's something that I feel is important, that I want to provide for others. And after having my own experiences with death and loss that like, like, I don't think anybody should have to be alone in it. We are meant to grieve in community. We are meant to be with one another, be seen by one another, be held by one another, physically and otherwise. And isolated grief is the absolute worst. It eats away at people and it's unfair. It's not how we're wired. We're wired to connect with one another and it gets a lot more manageable to carry when we have others to be there with us. So I feel like it's really important for us to have that. And if that means I help somebody get there or feel seen or heard or have a place to answer some questions, and I personally don't make very much money off of that, that's okay. But that's my personal. Both my personal preference and again, my privilege. I have, I have that capacity. Other people do this for a living and like their entire living. And so they need to have a different income structure. And that's fair. I mean, your time, your knowledge, your expertise is worth that. But definitely the amount of hours, for me, it's the amount of hours that I would spend with somebody that would alter the cost.
My personal input or what kind of energy that takes from me, that's. That's my thing to manage. And I have to know where my own boundaries or where my own capacity is. So I'm not going to see somebody every single day and work with like, that's just not within my realm where I'm not going to see, you know, work with several people at once because it's just outside of my capacity to juggle that and still take care of myself. Right.
[00:46:37] Speaker C: And also, you don't know when someone's actively dying and you probably need to have an availability factor.
[00:46:44] Speaker D: Yeah, yeah. That doesn't really work on a set
[00:46:46] Speaker C: schedule for so Births and deaths, we can assume, are pretty unpredictable.
[00:46:52] Speaker D: Yep.
[00:46:53] Speaker C: Yeah.
[00:46:53] Speaker A: Yep.
[00:46:54] Speaker D: An inhale in and an exhale out. So we have to navigate that as best as we can. But making time for people where I can, and if I can't be available, then, okay, what other resources do I have for somebody? Do I know somebody who could be available? Do I know. I mean, it can be easy, like in anything for people to fall into a very competitive mindset about it, but it's really not if I don't have the capacity or I don't have the expertise. If what you're looking to work with or have done is not something that's in my realm, let me find you somebody. Let me help point you to a couple other people who might be a good fit then and make sure you get your need met.
[00:47:29] Speaker B: And let's talk about some tactics if we can get you out of here on this. Like how do you suggest people start these conversations about having a doula and preparing for it and just some of the first steps that you would suggest that families consider when thinking about these things? Things.
[00:47:48] Speaker D: Yeah. Well, I think that starts with our conversations in general about what we want and what. As awkward as it feels to start having those conversations, to start having them early.
Hey, you know, when. When your time comes, what do you want that to look like? Where do you want to be? Who do you want around? What kind of support do you want? What do you have now in place and where do you want to be? And what does that gap look like? How do we bridge that gap?
I know my family, my. I have parents and step parents, and we have all had this conversation multiple times about. We are talking about this now not because we're in a hurry for anything to happen, but because I would rather us take the time to think about it, to talk about it now while you have the pre. One, the presence of mind. Two, we're not waiting for the emergency to be happening, to. Then try to make the decisions and have the conversations more than once because you might change your mind along the way. So this is what I want now. I mean, I know my husband and I have had these conversations. If something were to happen, if I were to be hospitalized, here's what I would want. Here's the measures I would want. Here's what I would not want if, you know, if I die tomorrow, this is what I want for memorials, what I want for my body, if I get very sick, and then we revisit that down the road. Because what I want now and what I want, you know, 20 years from rather, the things that you want at 40, the things that you want at 60, the things you want at 80 look very different.
[00:49:18] Speaker C: Yeah.
[00:49:18] Speaker D: At 80, I don't want life saving measures and machines and CPR. That breaks my bones and things like that. So the more we can just gently open the conversation. Hey, I was listening to this podcast the other day and they were talking about this. What do you think about that?
Hey, there's so many good books written by some amazing death workers like Alua Arthur, who just writes beautifully about how she got to be a death doula and what that looks like. And having those conversations, being able to bring the topic up from something like that can sometimes be more accessible. There was an episode of I don't know if you watched the Pit when.
[00:49:56] Speaker C: Oh, I know exactly what you're talking about. I was going to bring it up with the mom.
[00:50:00] Speaker D: Yep. They had. Well, they had multiple storylines which were super helpful. Talking about, what does end of life care look like? What does it mean to let go? You had the adult siblings whose dad was passing and then you had the mom who had a tabula.
[00:50:15] Speaker C: Yes, I was both of those. I was thinking about those. Yes.
[00:50:18] Speaker D: There was a big cheer among my friends. There was big conversation about this. Look, we're on tv.
[00:50:24] Speaker C: Yeah. And it was interesting because when I saw that, I thought, huh. I don't think I knew about that before. I was very glued to. I mean, I'm glued to all of it. It's a brilliant, incredible show. But that scene with the mother, the series of scenes with the mother, I won't ruin it for people. But then the other one about the adult kids disagreeing, I cannot stop thinking about that and how lucky I feel that my siblings and I are all on the same page in terms of what we want for our mom. I think that that's it really. It makes a big difference. Is there one thing that you wish every family facing a terminal or progressive illness knew about the end of life journey?
[00:51:01] Speaker D: One thing to know about the journey. There is no one pathway for it. It is, again, just like life. It is beautiful and it is hard and painful and all of those things make it up. And it's okay if sometimes it feels too heavy. That we find our community and we rely on one another. Siblings, family members, friends.
It can be something that you navigate together and it doesn't have to be all alone.
[00:51:28] Speaker C: Thank you, Andrew. You know that I'm going to sicily on the 23rd and I will leave my pile of instructions out for You. And B, I'm adding you in.
May I. May I never need you. And may I have the ability to have you. If not for me, though, also for me. But I think this sounds like such a wonderful way for families to have some real helpful guidance in a time that can be beautiful and profound and daunting.
[00:51:56] Speaker B: So sorry, one more extra question. Now that I think about it, because we've done. Now that we're doing now, this is kind of second in a micro series about death because we talked to. So I also have to ask my sci fi question to you, Bea.
[00:52:08] Speaker C: Andrew. Okay, I'm apologizing ahead of time.
[00:52:12] Speaker B: There are movies that depict the ability for us to download our consciousness into a computer program. And then when this body gives up, we just download it into a new body and we can kind of keep living body to body. Would that be something you'd be interested in?
[00:52:28] Speaker D: No, absolutely not.
[00:52:30] Speaker C: Same. When I'm done, I'm done.
[00:52:32] Speaker D: Let me rest.
Let me. Let me.
[00:52:35] Speaker C: Exhausted.
[00:52:36] Speaker D: The infinite also. Part of what makes life what it is is the fact that it's finite. And that is part of the. The sweetness of it. That is part of the joy of it. That's part of what makes even the seemingly small things so wonderful. We get to experience them now. We don't know what comes next. I don't know what comes next. Who knows? That's a. That's a mystery for me to find out when it's time. But until then I get to really be here and be present with that. And you know, I. When it's my time, I'm okay with that. It will be my time. And then I get to go have some other adventure and. And who knows what that'll be. But I look forward to that.
[00:53:16] Speaker C: I love it. Thank you so much for joining us. We are grateful for you. Grateful for what you do. I really hope that we can start normalizing these conversations and make them really meaningful because I'd want someone to know what my wishes are and I want us to recognize, as you said, this is circle of life and why not be able to talk about it in a way that is productive for ourselves and for those around us?
[00:53:43] Speaker D: Yeah, absolutely. Thank you for having me. Thank you for being open to the conversation. I love it. I'm happy to talk about death anytime anybody wants to.
[00:53:51] Speaker C: Yeah, I want to come to your cafe. I feel like there's. I. I'm just ready to start diving in.
[00:53:56] Speaker D: Yes, please do.
[00:53:57] Speaker C: For sure. For sure.
[00:53:58] Speaker B: Thank you, Bea.
[00:53:59] Speaker C: Thank you, Bea. I'll see you Friday morning at yoga.
[00:54:02] Speaker D: See you then.
[00:54:04] Speaker B: And here's mom to play us a little ditty.
[00:54:14] Speaker A: Getting to know you Getting to know all about you Getting to know you to know what to do Getting to know you Getting to know all about you and when you see more it's gonna be in another wonderful day.
[00:54:58] Speaker B: And we are back. Well, that was interesting and illuminating and wonderful. Karen takeaways.
[00:55:05] Speaker C: Well, first of all, as I said in the beginning, I think what an invaluable service this would be, especially for people who, I mean, I would imagine most people have not had to navigate the loss of a loved one. I hope they haven't. And it really is a scary place to be even when it can be also a peaceful place to be. And the idea that you have someone who can guide you through this is a normal circumstance or.
This is a natural progression or this is how somebody should be behaving, feeling, acting.
I just feel like having somebody who can walk you through in a very practical way and also very compassionate way to guide someone out as peacefully as possible as well as the family members as peacefully as possible.
I think this seems like an incredible, incredible idea. I mean the idea of a doula to bring you in and then a doula to guide you out and also to guide the family feels like something that we should be learning more about and considering.
[00:56:20] Speaker B: Yeah. And I was also interested to hear about how it can blend into pre death situations for people who are just freaked out about death. And of course there's a lot of people freaked out about death. It's. That's too heavy of a concept to possibly understand. And the inevitability of it until obviously we fix. Figure out the software aspect of downloading the soul and then reinstalling it, but probably the inevitability of it. And it's a heavy thing. It's a very heavy thing. And to have someone to talk to about that, whether it's the person who's afraid of their own mortality or freaking out because they're faced with it because somebody else died around them. Just to have those discussions, have someone to walk you through those complicated emotions, that's really helpful because I can see how it can be paralyzing in a way for the living if you're caught up with anxiety about that stuff.
[00:57:17] Speaker C: Yes, for sure. And I think that so many of these things that we're talking about. Yeah, they really are for the living.
I don't know what it's like for the person at the end, but I know what it's like to be surrounding that person and wanting to make sure that you're creating a peaceful exit if you have the opportunity to do so. I mean, obviously not all deaths occur this way. But I think that I know for myself in that moment with dad, I would have grabbed any ounce of support I could get my hands on just to give me some validation that I was handling it the way that I should handle it. And again, I know there are no specific right or wrongs, but I do feel like some real guidance from someone who's just been through it so many times and can see it from a very compassionate and pragmatic approach is really meaningful.
[00:58:09] Speaker B: Indeed.
[00:58:10] Speaker C: Indeed. Just so you know, I did mention it, but in my little instruction manual. Cause, you know, I'm going on another trip soon. I will include that should the family need a death doula to guide them or guide me.
You can pay for that out of my estate planning. I'm. I'm thrilled to cover that for all of you.
[00:58:28] Speaker B: It's good to know. Just add it to the post it note.
[00:58:31] Speaker C: I actually have typed up specific instructions.
[00:58:33] Speaker B: I know.
[00:58:34] Speaker C: I'm joking about that.
None of my instructions are on a post it note other than to say, this is the envelope. This is the right one. You don't even need that anymore. You know the envelope. You know where it is? I got it. Yeah, yeah, yeah, yeah.
[00:58:45] Speaker B: All right. Well, please, like, subscribe send us your comments. Email us at ifitsnot1mail.com we'd love to hear from you and thank you for your support. And as always, here's mom to play us out.
[00:59:07] Speaker A: If I were a bell, I'd ring in a really busy day.
And I. I've done that for all the things and I know it is only for you and Will. Te.
[00:59:40] Speaker C: That was pretty. That was very different.
