Talking About Death Is Really Talking About Love | Death Doula Amy Ascalon

Some conversations change the way we see life.

This week on SHE Asked: Tools for Practical Hope, Anna sits down with end-of-life doula Amy Ascalon for one of the most meaningful conversations we've had on the podcast.

Together they explore why talking about death is really talking about love—how preparing for the end of life can bring families closer, ease grief, and help us honor the people we love with intention and compassion.

Whether you're caring for aging parents, navigating grief, supporting someone you love, or simply avoiding a conversation you know needs to happen, this episode offers gentle wisdom, practical guidance, and hope.

In this episode, you'll learn:
• What a death doula actually does
• Why grief often begins long before someone dies
• How to start difficult conversations with the people you love
• Common misconceptions about hospice
• Ways to better support someone who is grieving
• Why planning ahead is one of the greatest gifts you can give your family

✨ If this conversation resonated with you, please like, subscribe, and share it with someone you love. These are conversations we all need to be having.

Learn more about Amy Ascalon:
Website: https://www.beyondsoundandsky.com/contact

Learn more about Anna McBride:
Website: https://www.annamcbride.com

Follow Anna:
Instagram: @annamcbride_
TikTok: @annamcbride_

#DeathDoula #GriefSupport #EndOfLife #HospiceCare #Healing #PracticalHope #SheAskedPodcast #AnnaMcBride #Caregiving #GriefJourney

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Transcript

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Welcome And Why Grief Matters

SPEAKER_00 0:02

Welcome back to She Asks Tools for Practical Hope. I'm your host, Anna McBride, and I am so glad you're here. This is the podcast where we explore healing, resilience, grief, reinvention, and the conversations that help us navigate life with more honesty and compassion. As I said, I'm your host, Anna McBride. I'm a therapist, coach, and someone who believes that the hardest seasons can become the best teachers and they can connect us to deeper conversations, healing, and meaning. Through my coaching work, retreats, and podcasts, I support women navigating grief, divorce, life changes, and emotional healing. If you're looking for support in your own season of change, you can learn more about all that I offer through AnamcBride.com. Today's episode is an important conversation because we're talking about something our culture spends very little time really talking about, and that is grief. Not just death itself, but caregiving, grief, end-of-life planning, family dynamics, fear, and what it means to truly support someone through one of life's most difficult and precious times. Today I'm joined by Amy Ascalon, a death duela, and hospice volunteer whose work centers around helping individuals and families navigate the emotional, spiritual, and practical realities of dying. Amy, welcome to She Asked.

SPEAKER_02 1:51

I'm glad you're here. Thanks for having me.

SPEAKER_00 1:53

You're welcome.

Amy’s Story Into Death Doula Work

SPEAKER_00 1:55

Um, as always on our podcast, we like to begin with a story. So, Amy, people don't usually wake up one day and decide to become a death doula, as far as I know. I'd love to have you take us back to the beginning and what brought you into this work.

SPEAKER_02 2:14

Many years ago, probably about 10 years ago, 15 years ago, my grandfather passed away. Um, I was very close to him. Uh, he was sick for a long time. And when he passed, my grandmother was alone and she called hospice and she caught and the funeral home. And the funeral home came right away and we're was trying to take my grandfather. And my grandmother was not in a good headspace, obviously. And she um she just kind of freaked out and was like, Where are you taking him? Like, I she it just so it just happened so quickly. Um, and they said, We're gonna take him to the funeral home. And she's like, Well, where is he gonna go? And they said he's gonna go into the freezer or the refrigerator, rather. And um, she said, but he's gonna be cold. And they said, Well, then we can embalm him, which was not a part of his death plan. Um, in the Jewish culture, we don't embalm, uh, which is one reason why we bury so quickly. Um, and so my grandfather was embalmed. And um, when I found that out, I was just I was so disappointed that it didn't go the way that he wanted it to go. Um and it just wasn't part of the tradition that you know, years and years of our family have done. And so um, so that kind of always stuck with me. Um years later, during COVID, I was in HR and I worked in benefits. We were dealing with a lot of death, a lot of um people getting sick, um, not only our employees, but our employees' parents and friends. And um it it was a time where I felt like people needed an ear, someone to listen, someone just to listen. Um, employees started calling me just to talk um about their loved one being sick or passing, you know, and I wasn't really even saying much, but just having someone that they could kind of talk to without judgment um was something that seemed to be missing. Um, and I actually heard a podcast uh not long after that was following a death doula. That was the first time I heard about it uh in 2020. And um, the story was so beautiful of this family that brought this woman in, and she stayed with them until the end, and she became almost um she just kind of lightly guided the family and helped them where they needed, not overstepping. And it was just it was so beautiful, and that kind of stuck with me as well. And then when I got laid off from my job a few years later, um this was the only calling that that was coming to me.

SPEAKER_00 5:19

Wow. Wow, what a an amazing story taken from your real life and even then transported to true purpose, uh, which I think is where all that comes from. Um and so I really wonder how your own experiences with grief shaped this path.

SPEAKER_02 5:42

Um, I think it was more so with death and dying and uh preparing than for grief. Um I think but I also think that for those family members, grief starts before the person dies. Um the person is changing um well before if if they're if they're ill, well before they actually pass. And so I think a lot of times the caregiver or the loved one feels that grief and doesn't know how to respond to it before the actual death. And almost sometimes I feel like the death, which is the most dreaded thing that could possibly happen, is kind of a relief, which then people feel guilty about feeling, you know. It's like it it but it starts way earlier, I think, than when somebody passes.

SPEAKER_00 6:45

Thank you for saying that. I I have had a lot of experience with grief, lost um at least seven family members, um, and some to addiction, some to cancer, that you know, that that type. And I think like anticipatory grief is really hard to deal with. Um, because I do feel like as you described, that you're waiting for death, right? And and yet when it still comes, right, it still is shocking and probably even more amplified as a result of all that waiting. Right. Yeah. Particularly if you're not prepared.

SPEAKER_02 7:31

So I went through a end of life doula program, um, and there wasn't anything that we didn't ourselves talk about to each other as a group. Um we went through with different pairs or groups of people, um, what do you want your death to look like? Um let's say, let's say you uh you found out this morning, right where you are, right who you are, that you have a terminal illness. What do you want? What are you going to do? And like you put yourself in that spot and in all different scenarios.

SPEAKER_01 8:17

Yeah.

SPEAKER_02 8:18

And it was something that I had never thought about. And and I mean, there was a woman that I was paired with and she was crying. She's like, I'm if you know, I'm gonna die before a year, I'm you know, I'm not gonna meet my first granddaughter. She's not gonna know who I am. And you know, it's just it's but that could happen. Like that's the thing, it could happen any day. Nobody knows. It's yeah, it's not just people that are sick, you know, although that's who I would be dealing with for the most part, but um it's it's bigger than that.

SPEAKER_00 8:56

I think about like I I just recently had a colonoscopy, right? And so I had to go under anesthesia for that. And and they ask you at the time of that kind of procedure, what are your uh do you have rather a uh a death plan, right? I think they they call it a certain thing. I'm forgetting the phrasing. However, the answer I had to give was the honest answer, which is no.

SPEAKER_02 9:23

Most people don't, right?

SPEAKER_00 9:25

And and that's why I think that's the the the power of a conversation like this is that it's it's never early enough to really come up with a plan on how you want to die. Um, because it I think it alleviates and and rightfully so, your loved ones from having to navigate that for you or decide that for you. Because it's hard enough to grieve, right? And then to have to decide those things. And yet, in my case with family members, all of the ones that died, none of them had a plan, including my parents who were aging, right? We we as a family had a plan, yet they themselves had no idea. And I think like um it's important conversations to have.

SPEAKER_02 10:16

Important questions to ask. Yeah, and a lot of people think, oh, well, they they don't want to talk about it, or you know, I don't want to upset them, or I, you know, I don't want them to think negatively. Um a lot of times it's a relief for that person to talk about it. And it it almost it's you know, it it almost makes them feel like one thing that's finished.

SPEAKER_00 10:48

Okay.

SPEAKER_02 10:49

You know, and

Why A Death Plan Helps Loved Ones

SPEAKER_02 10:50

you know, there's so many things that would go through somebody's head if if they're if they're transitioning. And um, you know, there's just so many things that they feel like need to be done. And if they feel like their family members aren't going to have all those questions and they're gonna know what to do, and it's gonna make it easier for them, they would want to have that conversation.

SPEAKER_00 11:15

I would hope so. I would not everybody, but yeah, I think I think if you're aware that you're in the process of dying, it certainly gives you something to do, other than thinking about dying, right? Right. And so I think it's very practical and and very real. Um, so let's talk about what is a death doula. I mean, I imagine uh some of my listeners at least don't know what that is. Um, so if you could please explain the work of a death doula is.

SPEAKER_02 11:46

So it there's many different parts. It's uh, and it doesn't have to be everything. Um, but uh it would be a lot of times it's the caregiver is the one that would reach out to me, but the person that's dying could also be the one that makes the connection. And it is just kind of being an advocate for the most part.

SPEAKER_01 12:08

Okay.

SPEAKER_02 12:09

Uh it is asking those questions that the family finds uncomfortable, making them feel more comfortable about what's going to be happening, giving them an ear to get out any regrets that they have, any stories that they want to tell, you know, anything like that, in addition to if the conversation goes there. I mean, again, it's like all it dependent on how long I would be with them and how open they are, but ultimately understanding what they want. What do you want the end to look like? Where do you want to be? Who do you want in the room with you? Who don't you want in the room with you? Is there like an ex-husband that you don't want there? Do you want your children or grandchildren to see you like that? Or do you not want them to see you like that? At what point do you not want them to see you? Are there pictures that you would want to surround yourself with? Is there music that you love that you would want playing? Are there sense, you know? I mean, the list can go on just to kind of build a picture of what they want. In addition to if they don't have, you know, a funeral home picked out or funeral or anything like that, it would be that as well. In addition to do you want a big funeral? Um, a lot of times I hear that somebody just wants a celebration of life later on. Uh, they only want the immediate family, you know, at you know, the the cemetery. And they want something bigger where people can enjoy and people can, you know, get together after. And so when that person passes and the family doesn't know what to do, I can kind of guide them in the direction. Like this is what they ask, this is what they told me, you know, maybe we should do this, you know, that kind of thing. So in addition to talking to the um the family members, you know, letting them know the process of death, uh, how far along they might be, introducing them to hospice if that's something that they're open to. You know, it's it's really uh and and projects. A lot of times the person that's passing wants to do some kind of project. They want to go through their old photo albums and write down who all the people are, or they want to write letters to their grandchildren uh for their next couple of birthdays, or they want to write down advice, or they want all of their friends and family members to write letters to them. Uh stories, their most memorable stories with that person. And then maybe that person wants these read to them when they're transitioning, or maybe at the celebration of life. You know, it's it's really endless.

SPEAKER_00 15:11

So many things to think about. And uh it's I'm just really in all that there's somebody who can embody that and help navigate people through that very vulnerable time. Um, so I I know I am, and and many people are familiar with the word hospice.

What Death Doulas Do And Don’t

SPEAKER_00 15:32

So, how are death doulas different than hospice?

SPEAKER_02 15:36

So, hospice takes care of making sure that somebody's comfortable. They will send somebody, they will send nurses and and aides to your house, if that's where you are, and they will um make sure the person's comfortable, uh medicating if needed, you know, making sure that they have uh all the equipment that's needed. They are there in any kind of situation where someone feels like they're not breathing. Instead of calling 911, they call hospice. Hospice has a 24-hour line and they answer right away. Um, there's a masseuse that comes. Uh, they also have a social worker, they have a chaplain. These are uh things that anybody can take advantage of. It should go through Medicare if you're at that age. Otherwise, insurance, if you have, should cover most of it. But it's a great resource where if you're at the six-month mark and your doctor feels that you have about six months or less left that you can get on. And a lot of times caregivers wait until the very end when they're just so exhausted and they haven't showered in weeks and they haven't gotten any sleep and they're a wreck before they actually reach out to hospice. And then I I hear all the time like, oh my gosh, I wish I would have reached out sooner. So I don't physically move people, I don't feed people, I don't give medication unless asked. You know, I these are all things that are possible to do, but not necessarily what an end-of-life doula would do. I'm more there for them and the family mentally and to teach what uh, you know, the process and to be an advocate. Um Okay.

SPEAKER_00 17:32

So what I'm hearing you say is hospice is there to perform palliative care, caregiver roles. Not that you don't step in for that, however, you are really the advocate, the voice for the person who's dying in the process of dying.

SPEAKER_02 17:51

There's really nobody like that. There's not really a role like that in hospice. Now, some hospices around the country have started hiring end-of-life doors.

SPEAKER_00 18:03

Okay.

SPEAKER_02 18:03

But that's that's pretty rare right now. Hopefully that will be something that is more common in the future.

SPEAKER_00 18:10

Okay. Wow. All right. So, what kinds of conversations do people need the most help with?

SPEAKER_02 18:19

I think everybody's different.

SPEAKER_00 18:22

Okay.

SPEAKER_02 18:23

But I think just starting the conversation.

SPEAKER_00 18:26

Okay. I would agree with you. I think that at least in my family's situation, every time death showed up, we were thrown. We couldn't talk about the elephant in the room even when we knew it was coming. Right. And so if we had someone who could have helped us just begin talking about it, I think it would have taken the pressure out of the balloon, so to speak. Right. That's incredible. And and and so at what point should someone reach out to a death doula?

SPEAKER_02 19:02

It can be at any point. Um initial conversations can happen whenever. If um, you know, somebody's getting older and they just want to start the process just by having a conversation, but not utilize the services yet, they can do that.

SPEAKER_01 19:20

Okay.

SPEAKER_02 19:21

But if you get a terminal diagnosis, um, or not even if you find out that you have cancer and you're going through treatments, no matter what stage it is, it's something that you can start uh just to make yourself feel like you're getting all your ducks in the road, just in case, you know, just like your colonoscopy, where they ask that question. Uh so it's it it's really uh whenever you feel like you you kind of you start thinking about it more.

SPEAKER_00 19:58

Okay. Okay. That's a good point.

SPEAKER_02 20:00

But a lot of times after a terminal diagnosis is when okay.

SPEAKER_00 20:05

So what surprises people most about your work?

SPEAKER_02 20:08

Um, that it exists. Also, I I can't tell you how many times I tell people that I'm an end-of-life doula, and they say, well, first they're like, wow, I you know, I didn't know that existed. And then they say, I really wish that I had someone like you to have helped me. And then they start telling me their story.

SPEAKER_00 20:33

Oh, okay.

SPEAKER_02 20:34

Of a loved one that passed away. Um, you know, I went to a friend's party once. It was a birthday party, and I didn't know most of the people that were there. And so we were all kind of talking and mingling and meeting each other, and then every time it came up, I mean, I must have it's it's such a personal thing.

SPEAKER_00 20:54

Yeah.

SPEAKER_02 20:55

People were just telling me about their loved one that passed away, you know, my sister, my mother. Um, I didn't get to be sitting with my brother when he passed away.

SPEAKER_01 21:07

Wow.

SPEAKER_02 21:08

And then, like in some stories, they're like, you know, he told me not to come that it wasn't time, but he passed away. And so I'm like, maybe he didn't want you there. Like maybe he didn't want to burden you with that, and he just wanted to die, you know, alone.

SPEAKER_00 21:27

Yeah, you know, having worked as a therapist, I'm I'm very uh practiced at receiving stories from people who have gone through a lot of what you've just described. Um I think what's interesting is that I was just I just ran a retreat for women and there was someone there, one of the attendees, whose father was in the process of dying. And in fact, before the retreat ended, he Had passed and she was she was grieving and yet containing it, right? Or covering it up. And and uh the last day before we said our goodbyes, the news showed up on her phone, and she was devastated. And I thought, you know, witnessing, watching, and comforting her, and I thought, wow, she really seemed not prepared, you know, to receive this news. And um, much as you just described in that uh story where you said maybe the brother didn't want her there, I I do think there it is a thing, you know, uh you would be able to say more than me, where in order for people to really let go, they definitely need someone someone or someone's not in the physical space. Like it gives them permission to let go. So have you had experiences like that?

SPEAKER_02 23:06

Um, sure. I mean, it's for me, I do feel like it's sometimes easier to talk to a stranger.

SPEAKER_00 23:13

Yeah.

SPEAKER_02 23:14

Someone that's not gonna judge you, someone that you can make mistakes with and you're not gonna be embarrassed about.

SPEAKER_00 23:21

Right.

SPEAKER_02 23:22

Um, there's something in that for sure.

SPEAKER_00 23:25

And but yet I meant more to the point of like her, uh, and you shared the story, but some I mean, it's a thing, right? Where people who are in the process of dying, like energetically, sometimes they need the space. Right.

SPEAKER_02 23:39

Oh, definitely, definitely. My grandmother did uh I'm so convinced my grandmother didn't want anybody uh to see her pass. She was actively dying for four days. Um, my mother was there 24/7. Um, I came, my sister came, we were all there, we were talking to her, we were sitting with her by her bed. Um and then on Thursday night, we're like, okay, we're gonna go home, we're gonna shower, we'll come back first thing in the morning. And she passed that night.

SPEAKER_00 24:12

Yeah. Yeah. My my uh one of my sisters who passed from addiction, I was there at the end every day. You know, she was an ICU, and um, the day she passed, I uh showed up as I had been reading her something, hoping, you know, against reality that she was going to come out of it. And um anyway, uh there was a point in the visit that I had to step out and call her husband to tell him he should show up. And and it was during that time that she passed. And and I thought about it, I thought if anyone was too attached to her staying alive, it was me.

SPEAKER_02 25:01

And and me getting out of the way gave her permission to let go, and it's almost like they feel like it would be a burden for you to be there at that point, yeah, exactly.

SPEAKER_00 25:15

Wow, it's incredible.

SPEAKER_02 25:17

I mean, you hear stories of people that are actively dying and their loved ones trying to come in from another country and they can't they don't get there for a week and they're gonna die tomorrow, but they stay alive.

SPEAKER_00 25:28

Yeah, it's incredible.

SPEAKER_02 25:30

Also, there are facts around loved ones that are actively dying, waiting until after Christmas.

SPEAKER_00 25:39

Yeah, Christmas is a big time in my life where a lot of my loved ones have passed. And I know it's not just personal during during the holiday season.

SPEAKER_02 25:50

A lot of times they like to the people try to stay alive

Why Families Avoid Death Conversations

SPEAKER_02 25:54

Christmas, yeah.

SPEAKER_00 25:56

Well, we never got that lucky anyway. Um, so let's talk about why we struggle to talk about death. Um one thing that struck me in our uh pre-screening conversation is how uncomfortable people are talking about death, even when death is clearly approaching. Why do you think we avoid those conversations so much?

SPEAKER_02 26:19

I think they're hard. People are scared, nobody um whatever you believe, you don't know for sure where you go. It's just fear of the unknown.

SPEAKER_00 26:31

Yeah. Wow. Yeah, that's a that's true. I I think like as much as I'd like to say I'm at peace with the idea of death, I think the uncertainty of anything unsettles me. So I can understand like that's would be tricky to be able to navigate. Um so we talk about it as fear, we maybe it's denial or or loss of control. What what do you think is behind all that?

SPEAKER_02 27:05

I think all of that.

SPEAKER_00 27:07

Okay.

SPEAKER_02 27:08

It's it's a cultural thing. There are other countries that celebrate it, yeah. Um, that treat it differently. There are countries where kids are raised to talk about it. And here it's like if you have a child, you don't want them to go to the funeral, you want them to see the body. You don't, you know, we're we shield people from we shield kids from that. And so we grow up thinking that it's not something to be talked about.

SPEAKER_00 27:42

Yeah, I think it's so odd. I like I studied in India for a while, and um, and I got to watch in one of their towns a lot of their ceremonial funerals, and they were shrouded with with children. The whole family was there participating in the process, and I was just really struck by how natural it felt. It was equal parts emotive, I mean, my by just what I saw, emotive and celebratory, right? And and yet it was honored, it was a very spiritual, uh, sacred process. And I thought, wow, if if they're doing something right, you know? And so, yeah, I'm really very much in admiring of cultures that bring death up a lot sooner than we do and in better ways, right?

SPEAKER_02 28:41

In a lot of the training in both hospice and with um my end of life doula, it we talk about you know, children and how we we all have stories about the first time that we started talking about death. And a lot of times we're much older. People were saying that my you know, my father was really sick and nobody talked about it and I didn't know what was going on. And a lot of times what they're thinking in their head is scarier than what actually is. And then when the person dies, why isn't the person here anymore? It's it's it should have been something that should have been discussed earlier.

SPEAKER_00 29:22

Yeah, I would agree with you.

SPEAKER_02 29:24

Just being open. It's it's nothing to shelter a child from. And um, what's in their head of where somebody goes is actually much worse than finding out the truth of what's going on.

SPEAKER_00 29:40

Yeah, I agree with you. So, what do you think happens emotionally in families that avoid these kinds of conversations? I'm I'm just thinking, like it does it fracture them? Does it not allow them to heal sooner?

SPEAKER_02 29:55

Yeah, I mean, I think it probably is something that stays with them for many years.

SPEAKER_00 30:00

Yeah.

SPEAKER_02 30:01

Um, that affects them in getting on with their life or being able to talk to somebody about it.

SPEAKER_00 30:07

I I would also imagine there's not probably nothing more intimate than birth and death, right? And I have three children, so I was certainly there for that. And I've been at the deaths of family members, and yet, other than emoting uh and and then maybe honoring at funerals and such, we never really talked about the intimacy of death. Can you talk about that? Like, what's available that we could be accessing if we just were open to it?

SPEAKER_02 30:42

I think it's just knowing what people want and being able to honor them and feeling good about you know what is happening and what happened.

SPEAKER_00 30:58

I think otherwise we're just guessing.

SPEAKER_02 31:00

And family members argue um because they don't know what the loved one wants, and people, you know, siblings will think they want different things. So it does fracture those kinds of relationships many times.

SPEAKER_00 31:14

Right.

SPEAKER_02 31:14

Um there's no good that can come out of that.

SPEAKER_00 31:20

So so let's talk about that. Like, what are some of the consequences that can come from not planning?

SPEAKER_02 31:27

So uh fractured relationships, right? Um, family members just feeling like they know what their loved one would have wanted, and then just nobody being in agreement.

SPEAKER_00 31:43

And I think if there's ever a time you want peace or agreement, it it's at death.

SPEAKER_02 31:49

Because you can't start grieving when you're trying to figure out and scramble and wonder what the person wanted or arguing with your members. It's really it it delays the grieving process. And I think that it it hurts it because you know, you might not end up grieving right away, and then it hits you in other ways, or you know, further down the line when a year later you realize that you haven't properly grieved.

SPEAKER_00 32:22

I I I this brings up a really good point about grief and relationships. You had shared something very vulnerable with me uh earlier, and you mentioned it and then in our previous conversation about the tremendous loss impact, losing your grandfather, and then what you went through with your grandmother, but you were also impacted, the loss impacted your marriage and other relationships. I think so many people underestimate how grief affects partnerships. I can tell you from my own experience, I'm now divorced, yet when I was married, that's when a lot of these deaths in my family happened, uh five of them at least. And my ex-husband's mother passed, and I had dad who passed, and then siblings. And we could never come together like and support each other through that grief.

SPEAKER_02 33:14

Such a shame.

SPEAKER_00 33:16

Yeah, I agree with you. I think it was a red flag. However, it certainly was unfortunate because I I would have loved to have done more and have received more. So, can you speak a bit about

How Grief Reshapes Relationships

SPEAKER_00 33:29

that? About what you know, so many people underestimate that. How does grief change people emotionally?

SPEAKER_02 33:36

Oh, it can affect all parts of their lives. It can uh sometimes people just want to stay home. Uh, they don't want the social interaction.

unknown 33:48

Okay.

SPEAKER_02 33:48

Or it's something that they want to talk about all the time, which is totally natural. But their friends that are listening are starting to get sick of it.

SPEAKER_00 34:00

Yeah.

SPEAKER_02 34:00

They sense that, and it's an uncomfortable time for everyone. People don't know how to behave around somebody who just lost someone.

SPEAKER_00 34:09

Yeah.

SPEAKER_02 34:10

And I would so 100% suffer. Uh, you know, not just family members, but with friends, and all of a sudden you feel different, um, and that nobody understands.

SPEAKER_00 34:23

Yeah, grief is different for everyone, right? It's almost I I've heard that it's like as unique as your thumbprint, right? Like that we all have our own process. I have a friend who whose husband passed away um a couple years back. And and when I, you know, when she was talking about it and and I'm listening to her, she was describing it as a very unique thing to lose a partner. And and of course, I had my own opinions about that. I'm grateful, like I never went there, meaning I I didn't make her wrong, I didn't make her thoughts wrong. And I thought, like, this is an interesting way to navigate um this experience, right? Like, how do we learn? And this is what I'm asking you, to support each other better through grief.

SPEAKER_02 35:17

There's certain things to know, there's certain questions not to ask. You know, you don't the person going to a better place. Um, you must feel so relieved uh that you don't have to go through that anymore. You know, uh, I went through the same thing, I totally understand. You know, just things like that don't help. It's not about you, it's about them. And no matter how much it is exactly the same of a situation that you went through, you're not going through it. And you telling them how you got through it or how what helped you isn't necessarily going to help them.

SPEAKER_00 36:04

Yeah, I think that's a really good point.

SPEAKER_02 36:12

And I think a lot of times people aren't able to do that, which is why I think when I tell strangers that I'm at an end of life doula, they share it with me right away. They bring it up. It's something they want to talk about.

SPEAKER_00 36:26

Interesting.

SPEAKER_02 36:27

It's not something they feel like they can. And it's a it's a process. I mean, it can take a really long time to grieve. And you really need patient people with you. And that patient person might not be your best friend, it might be a neighbor that you didn't really have a relationship with before. Just because you're having more private conversations with somebody that you didn't expect, you know, it's okay. You can still be friends with your friends, but you can that person that you're talking to can be anybody.

SPEAKER_00 37:03

Okay. So what I'm hearing from you is that it's important for the person who's going through grief to identify who are the safe people they can open up to because talking about it is a part of the healing process. What else do grieving people need from people who care about them?

SPEAKER_02 37:22

They just need someone that's going to be where they are. If that person, you know, says how they're not getting out of the house and they really need I mean, it's about what they want. A lot of times they don't know what they want, but they kind of do. It's like tell them you want to go for a walk every Thursday.

SPEAKER_01 37:44

Okay.

SPEAKER_02 37:44

Um, you know, set time aside on the calendar. And if they cancel, they cancel. But just bring up, ask them questions about their loved ones. You know, like what did you like them to talk about them? Right. What did she used to do for your birthday every year? Like what tell me stories of um, you know, the first time you did this with her, or you know, that's uh a great way to honor the person that has passed, as well as bring up, you know, any memories, whether it be sad or happy. But even if the person cries, it's still they'll if they they're not gonna talk and open up if they don't want to.

SPEAKER_00 38:32

Yeah. Yeah, I I hear you. I think like as you mentioned already, that it is important for us to be talking about this topic, whether we're uh anticipating grief, going through it, or are on the other end, I think, right? Supporting somebody.

SPEAKER_02 38:51

It's uncomfortable, it's going to be uncomfortable just because it's not something we're used to.

SPEAKER_00 38:55

Right.

SPEAKER_02 38:55

Violence is okay. You know, again, if they're crying, that's totally natural. It's not something to shy away from or say, let's do something else, or you know, get them some tissues. Tell them it's okay, give them a hug if they're okay with being touched. Bring them food, just stop by um, or call them. And even if they don't return your calls, keep calling.

SPEAKER_00 39:24

Yeah.

SPEAKER_02 39:24

Um, checking in on them, making sure they're okay. Don't say, Oh, she hasn't called me for like three months. Like, obviously, she doesn't want to talk to me.

SPEAKER_00 39:32

Yeah.

SPEAKER_02 39:33

Just keep at it.

SPEAKER_00 39:35

I I really appreciate you saying that. One of my sisters passed away in December from cancer, and um, and she has two grown sons. Um and one of them is about to get married, and the other one is navigating a younger path, however, you know, grown up and and I have decided um to to stay in touch, to stay connected, to check in on them, have dinner with them, you know, spend time with them. And one of them lives in New York City, so it's easier for me to do that. Um, and I think, you know, that in a way, because cause what I can do is I can share stories about their mom that they don't know because they weren't there when we were young, right? And and I can hear from them stories about her that I didn't know because I wasn't there, right? So it's a way for us to really extend her life by talking about her. And and it is something that is such a giving and receiving when you allow yourself to do that. It's important.

SPEAKER_02 41:01

Also, you said he's getting married. Those are the toughest times. I mean, a lot of times people don't even realize how they're gonna react when Father's Day comes around or when their birthday comes around, either their birthday or the loved one's birthday. You know, a lot of times Christmas isn't the same. Just the traditions that you had are are forever changed. And it is forever, it's never gonna go back to the way it was before. And so these are times to keep in touch with them and let them know that you're there for them, that you understand this must be hard.

SPEAKER_00 41:40

Thank you. Thank you. I think it's I think just as it's awkward for anybody to deal with the death of a loved one during certain holidays, I think about that. Um, so let's talk about COVID, because that's where you transitioned into this

COVID Lessons And Hospice Misunderstandings

SPEAKER_00 41:56

work. You know, you stepped more deeply into this process at that time. You mentioned how you were working still in HR in this other company and that you were dealing with, you know, death of employee loved ones. And and can you talk about what you witnessed during that time?

SPEAKER_02 42:15

Pandemonium. It was um no one knowing what was going on, nobody was talking to each other. Employees had parents that were in the hospital, and a lot of them weren't talking about it, they weren't telling any of the other employees, they weren't you know, it was just it was just such an insane time. Wow. Um, because everybody was going through something, regardless of if somebody was dying or not, nobody knew what was going to happen. And so it was hard for employees to focus on things. And you know, at first the company just wanted to be like, just keep it going, like just like it was, but we're just gonna work from home. But it that's not what it that's not what it is, and until it was recognized that, hey, this is going on, and these are all of the benefits that we can offer you. We have more therapists on hand, we have more compassionate days that you can take, an extended bereavement time. You know, I educated employees on pay family leave, which they would get paid for in New York. All of these things that came up and tools that they could use that wouldn't have come up prior to COVID. I think I think that the company became more employee focused.

unknown 43:53

Okay.

SPEAKER_02 43:54

I think a lot of companies did.

SPEAKER_00 43:56

Yeah, I would, I, I imagine it did because I think it exposed. Something right, what our cultural's view around death was, like it brought it out to the surface because we had to deal with it. So, what do you think, or how did it expose it? Like, what what were your experiences of what we were ill prepared for as a culture?

SPEAKER_02 44:17

I think it was experiencing a regular death or a tragic death, but on steroids. I mean, it was it it wasn't unique to one person, but people weren't talking to each other. It was also very isolating. Very beginning, people were alone. If somebody's loved one was sick with COVID, they couldn't see their loved one. People had loved ones in nursing nursing homes and couldn't couldn't see them. It was a lot of uncertainty, a lot of people that were scared of what was going to happen or what could happen. And uh strange time.

SPEAKER_00 44:58

Yeah.

SPEAKER_02 44:59

Hopefully, I mean, I think that it hopefully did teach people some lessons, but I do also feel like somehow the world just snapped back to where it was before.

SPEAKER_00 45:11

Yeah, yeah.

SPEAKER_02 45:12

Um, and that time was like a moment in time that I thought maybe a couple years ago would have changed our culture and changed the way employees were thought of at larger companies. But I do think people are just kind of saying that that was a blip, you know, back to where we were before.

SPEAKER_00 45:37

Wow. That's a sad statement of the way our minds work or can work.

SPEAKER_02 45:42

Um I think people just want to forget about it.

SPEAKER_00 45:45

Yeah, I do too. I do too. So let's talk about hospice and end-of-life support. I know you volunteer with hospice, which I think you know, many people understand that concept. What do you wish people knew about hospice and how it works?

SPEAKER_02 46:03

I think just that it exists and what it is. The person does not have to be at the end stages in order to go on to hospice. If somebody has a terminal illness and they have six months or less to live, you can get on that. You're obviously at the point where you're no longer accepting treatment. Like if you're on hospice, a lot of people like to use the hospice doctors. They're very accessible for the most part, and you can call them anytime. I mean, God willing, there is a treatment all of a sudden out there that's gonna make this person, you know, live much longer. You can get off of hospice just as easily as you got on hospice and um and do the treatment and then get back on hospice if needed. Uh it's not a death sentence by any means. It's flex. And there are many people that have been on hospice longer than six months. Um, there are many people that, you know, have gotten off, gotten back on, gotten off, gotten back on. You know, it's it's a lot of times when I tell somebody that, have you thought about hospice at this point when they're telling me about their loved one? They're usually like, no, they're not at that stage yet. And it's like, what is that stage to you? Like there's no harm in making the call and finding out more about what can be offered because hospice is there to help.

SPEAKER_00 47:30

Right.

SPEAKER_02 47:30

Um, people are afraid that they're going to give too much morphine and it's gonna kill the person.

SPEAKER_00 47:36

Um a lot of misunderstanding.

SPEAKER_02 47:40

I mean, uh it's not until the person is at that point where they are in physical pain that they would receive any any morphine and that you have a say in it. You could use anything as their caregiver.

SPEAKER_00 47:56

Um, I think like that's an important part of I I've been I've worked with hospice in different family member capacities, and I found like they were extremely important in terms of educating the caregiver and educating the family, answering questions, right? And um I've I have yet to work with a death doula, so uh you know, if it overlaps, I I haven't had that experience. Yet I can say for this about my experience with hospices that they were so amazing in terms of how they were available, emotionally, supportive, educationally, right? And and yet, as do most people that you're describing, we were ones that waited too long to get hospice involved.

SPEAKER_02 48:52

You know, why do you think that is that people are uh same reason why people don't plan? I think it's just uh people have such a negative, you know. If if you're on hospice, it means you're dying. Okay.

SPEAKER_00 49:06

And people have that's the proverbial elephant in the room, right?

SPEAKER_02 49:10

Yeah, people have not like processed that the person is actually dying.

SPEAKER_00 49:15

Yeah.

SPEAKER_02 49:16

Um, but hospice, yeah, they'll send caregivers so you can get out of the house, you can do your grocery shopping, uh, you can do your holiday shopping. Um, you know, it gives you some reprieve, and you shouldn't have to wait um longer than you, you know, have to to get wow.

SPEAKER_00 49:38

Really good point. So share a little bit about what you've learned about being around from being around people who are in the process of dying and the family members.

SPEAKER_02 49:50

Many times when people are actively dying, they start disconnecting from the world. They start sleeping a lot, they they start um maybe not making sense or hallucinating a bit if they're talking at all. There's a lot to know at this point. Uh, first of all, they don't need a ton of food. Hospice will totally work them through this, but a lot of times the act of chewing and swallowing and digesting at that stage is taking up calories and um getting the heart to continue pumping and you know, all of your organs to work and it's focusing on breaking down the food instead of breathing and surviving. And so when somebody is in bed 24 hours a day, they don't really need that much.

SPEAKER_00 50:47

And so family members overfocusing on how little people are eating.

SPEAKER_02 50:51

Right. They really want people to eat, they really want them to drink the insures and to, you know, if the person wants to, that's fine, but they they don't need the caloric intake. People can live for a lot longer than you think without food.

SPEAKER_00 51:08

Wow.

SPEAKER_02 51:09

Um, and uh, you know, having ice because their usually dry, Vaseline for the lips, which gets very, you know,

What Active Dying Can Look Like

SPEAKER_02 51:20

gummy. Wow, different things like that. Also, like knowing that they can still hear. A lot of times I find that family members start bickering, or you know, and it's like sometimes it's kind of cute, and it's like there's you know, but they can still hear. So you can talk to them even if they can't respond.

SPEAKER_00 51:41

Wow. Um that's a really good point, you know.

SPEAKER_02 51:43

Hearing is the last sense to leave.

SPEAKER_00 51:46

Oh, wow, I didn't know that. I didn't know that. That's incredible.

SPEAKER_02 51:51

So they might not be able to completely understand everything that's being said, but they can still hear your voice.

SPEAKER_00 51:57

They know or actively they can't may not be able to actively communicate yet. Yeah, they can hear it. Wow. So, what does dignity look like at the dying process?

SPEAKER_02 52:11

I think it's just honoring them. Um, I think it's, I mean, I think it's if you know what it is that they wanted, being able to do that in the way that they wanted, I think they would feel you know, they would feel like this was all orchestrated almost. This is all taken care of. I mean, understand that it's not a clean process. You know, just like a birth is not clean. You don't want, you know, 30 people to see you give birth necessarily. You you know, there are things that happen that people that don't give birth don't know about. And there's things in death that people that haven't seen it don't know about. So it is hard to be dignified. It I mean, it's so it's just something not to be shocked by. You know, the the movements and twitching of the body um are totally normal, you know, they they are losing control of their body. Okay, and and they're not completely themselves, and so it's hard to say how that can be dignified, but uh people not judging and expecting yeah, I think I think you're right.

SPEAKER_00 53:48

I think it's messy too often, right, people expect it to be clean and it's not. Right. It's like life is messy, right? And birth and all this. You mentioned in our preliminary conversation about death cafes, which I think is fascinating. Can you explain what they are and why they matter?

SPEAKER_02 54:08

Yeah. So there's a couple of different groups that do things like this. Uh, Death Cafe was started in the UK, I believe, uh years ago, and it kind of migrated here, which is great. And it's basically anyone. So it could be anybody that has one. You find a safe space, whether that be a park outside or in a library, you know, in a restaurant that's willing to house some people, strangers. You put up flyers, you get the word out that you're having a death cafe, and try to get all sorts of people from all sorts of backgrounds coming in to talk about death. It's no judgment. It is not religious. They encourage people not to get very religious. It is not a place where someone that just lost somebody last week goes. It's more of a place where people that have already grieved or people that haven't lost anybody ever, and they just want to talk about death because it's a scary thing and they want to hear stories and they want to talk about you know, different whatever they want to talk about.

SPEAKER_00 55:25

Yeah. That's a great, I mean, it's an interesting, interesting idea, and certainly is very uh I I would imagine very freeing to allow you to talk about any part of the death experience.

SPEAKER_02 55:42

It's a not-for-profit organization.

SPEAKER_00 55:44

Okay.

SPEAKER_02 55:45

And so there are no sponsors, nobody is allowed to advertise what they do. I wouldn't be able to say, Oh, your story, you have someone sick. I'm an end-of-life doula. Take my card, which might make somebody feel uncomfortable. Nobody is selling anything, it's just a safe space where people can feel open and talk about things that they don't feel comfortable talking about in front of their loved ones, or you know.

SPEAKER_00 56:18

So, why do you think a community like that is so important to grief and death work?

SPEAKER_02 56:27

I it's we're all going to die.

SPEAKER_00 56:31

So it normalizes it.

SPEAKER_02 56:33

It definitely normalizes it. It gives it so many people just don't have anyone to talk to. You know, it gives people an uh space to do that without judgment.

SPEAKER_00 56:46

Wow. Incredible. So one thing we do on this podcast is we have our tagline which says tools for practical hope. So I'd like to leave the audience with some practical tools uh related to every topic we talk about. So for somebody listening right now that's navigating either aging parents or a sick loved one, or simply realizes that they've avoided these conversations for too long, right? Um, where do where should they begin?

SPEAKER_02 57:17

Try to start the conversation. Uh, and you can start it by saying to your parents, hey, I'm gonna get my will together. Um, I'm going to uh this is what I want. If I am, you know, in the hospital and incapacitated, here is here are my wishes. And maybe start there. Uh see where it gets you. Ask them those questions as well.

SPEAKER_00 57:43

The good that's really great because I think about like I have three adult children and we sort of talk about it, particularly because we've navigated death a few times um together, yet we haven't talked about it specifically about me.

Death Cafes And Paperwork That Matters

SPEAKER_00 58:00

And and I think that that brings up a good point. Like, I need to own that, right?

SPEAKER_02 58:04

When you're all together, yeah, right.

SPEAKER_00 58:08

Right.

SPEAKER_02 58:09

It shouldn't be on one person, exactly.

SPEAKER_00 58:12

Yeah, good, good, good point. Like this is something that can really again, it's a point of intimacy, right? Where you really get to be open and honest about what uncomfortable as you might feel it is, it could bring you closer. Yeah, I think so. I mean, I hope so.

SPEAKER_02 58:29

Yeah.

SPEAKER_00 58:30

So let's talk about what kind of paperwork people should have in place.

SPEAKER_02 58:34

So different states have different kinds of paperwork. So um, there's like a health proxy in New York, there's uh like living wills, there are many different most forms, depending on where you are in the death process. You you should on your state's website, they should have a lot of information about it, actually.

SPEAKER_00 59:00

So get informed, get informed about what's informed required about from your state.

SPEAKER_02 59:05

Find a uh an attorney that specializes in the end of life. There are a lot of them. If you if you can just get a free consultation, okay. A lot of them do that and find out what it is that they could do for you or that you think you need. There are so many options of different things that you can you can do and you know make it easier on your family.

SPEAKER_00 59:31

Uh yeah, I I really would love to be able to alleviate that.

SPEAKER_02 59:36

There's also like little that are tricky, like certain things where after someone dies, it's very difficult for somebody to inherit something specifically.

SPEAKER_00 59:47

Right.

SPEAKER_02 59:48

Um and so if your name is not on like your car or your house or something like that, there are issues around that.

SPEAKER_01 59:58

Right.

SPEAKER_02 59:59

So things to think about, but there are many things that you're not thinking about. So um, you know, just seeking somebody out that knows more that can kind of help you think about it.

SPEAKER_00 1:00:10

And that's what an attorney can, a death attorney can do that.

SPEAKER_02 1:00:13

They can they can, yeah, they can help you navigate that, explain all the forms, make sure ever all everything that you uh want is in order so that it's all in a neat pile, and you can change that whenever you want, right?

unknown 1:00:29

Right.

SPEAKER_02 1:00:29

So if you decide that the person that you want to be your health proxy is moving to another country, or whatever the reason, you can change that, and you should change that, yeah. And to make sure you have copies of those forms because nobody else is going to.

SPEAKER_00 1:00:48

Yeah. Um good idea. I mean, it's important, right? So, how can um someone advocate for a loved one's uh wishes towards end of life if if or or even explore that? Like like I'm thinking about like I had siblings who passed and I wasn't aware uh or nor did I look into what their end-of-life plans were. Can can loved ones uh figure or figure or ask or find out what someone's plans were? How do you find that out?

SPEAKER_02 1:01:27

They should have that before the person dies. I mean, if there is no will, probate can't happen. And so it's everybody looking for one. And uh it's possible that two family members have two different copies of wills, and then it has to go to court, and the judge has to has to figure out which one happened first. And it's it's like a scramble, and so they would send out letters to every family member, uh, and if people don't respond, then it would go to the next of kin. Usually everything would go to the spouse first, right?

SPEAKER_00 1:02:06

But if there is no spouse or yeah, or children or whatever, right? Yeah. So what's one thing every person should think about before a crisis happens?

SPEAKER_02 1:02:18

Just getting their affairs in order.

SPEAKER_00 1:02:20

Okay, yeah.

SPEAKER_02 1:02:22

Uh just having a con an honest conversation with somebody. It can be uh start talking about it.

SPEAKER_00 1:02:31

Yeah, uh we gotta begin. We gotta begin to have these conversations.

SPEAKER_02 1:02:35

Yeah, it's the conversation is only gonna get harder as time goes on. You don't want to talk about you don't want to talk to somebody actively dying about what their wishes are. I mean, if you have to, you can uh communicate, but that's you want to honor them how they want it everything to go.

SPEAKER_00 1:02:57

When they can talk about it. That's why it's important. Right, right. Wow. Well, I think today's conversation uh reminds us that talking about death is really talking about life. Yeah, it's about love, presence, connection, honoring people how they while they're still here, and learning how to walk each other home as we move through this end-of-life process. I want to thank you, Amy, for being here and and adding to that conversation that I feel is so important.

SPEAKER_02 1:03:37

Thank you for having me. I think it's a conversation to have, so I'm happy to have it.

SPEAKER_00 1:03:42

So, how can our uh listeners find out more about you and your work?

SPEAKER_02 1:03:47

So I'm in on Eastern Long Island.

Finding Amy And Final Takeaways

SPEAKER_02 1:03:50

I am on the North Fork. Um, I can have free consultations with anybody that has questions. I have a website, it's beyond soundandsky.com. Um I live near the sound, which is a body of water, and it's also, as I mentioned before, the last sense that people have before they pass. So um amazing.

SPEAKER_00 1:04:15

We'll make sure all of that is included in the show notes. So thank you.

SPEAKER_02 1:04:19

Thank you so much.

SPEAKER_00 1:04:20

You're welcome. If this conversation resonated with you, please share it with someone you love. These are the conversations we all need to be having. And if you're navigating grief, caregiving, emotional overwhelm, or a major life transition and are looking for deeper support, you can learn more about what I offer in coaching, retreats, and and so much more. The workshops at anamcbride.com. You've been listening to She Ask Tools for Practical Hope. Until soon, be well.