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Bereaved But Still Me
Bereaved But Still Me
Carrying Grief Forward Doesn't Mean Leaving Love Behind
Award-winning journalist Dina Gachman takes us on a profound journey through the landscape of loss, sharing how the deaths of her mother from cancer and sister from alcoholism transformed her understanding of grief. With remarkable candor, Dina reveals the unexpected realities of home hospice care—administering morphine every few hours with minimal professional support, experiencing moments of dark humor amidst heartbreak, and feeling the conflicting emotions of not wanting a loved one to die while being exhausted by their prolonged suffering.
The conversation explores the concept of "ambiguous loss"—grief experienced not from death but from relationship changes—which Dina encountered during her sister's years-long battle with alcoholism. She articulates how this differs from the anticipatory grief she felt watching her mother's cancer progress, offering valuable insights for anyone navigating complex family relationships affected by addiction or illness.
Most powerfully, Dina challenges the common misconception that grief follows five neat stages before we "move on." Instead, she describes learning to integrate grief permanently into her life: "I'm now a person forevermore that carries grief with me every single day, but I have a ton of joy." This reframing offers tremendous hope to listeners feeling overwhelmed by loss, demonstrating how we can honor our departed loved ones while still embracing happiness.
Dina's book "So Sorry for Your Loss" emerged from recognizing how uncomfortable most people are discussing grief. She combines personal memoir with journalistic exploration of topics like pet loss, hospice care, and the connection between food and mourning. Her work reminds us that acknowledging grief openly doesn't diminish joy—it creates space for authentic healing and deeper connection with both the living and those we've lost.
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It's an excruciating way for you to live. So it's this really tough conflict of like, of course you don't want them to go. But by the end of the eight days, my sisters and I were like, I don't know if we can do this another night. Like it just really saps you of everything. So that was probably the toughest eight days of my life for sure.
Michael Liben:Welcome, friends, to Bereaved But Still Me. The purpose of our podcast is to empower members of our community. I'm Michael Lieben, and the father of three children, Liel, Sapir, and Idan. Liel, my youngest daughter, was born with a heart defect, and later she developed autism and epilepsy. Losing her at 15 is what has brought me here to be the host of this program. Our guest today is Dena Gashman. She is a Pulitzer Center grantee and an award-winning journalist. She writes for The New York Times, Vox, Texas Monthly, Teen Vogue, Vanity Fair, The Guardian, The New York Times Magazine, and more. She also writes a monthly movie column for The New York Times. Publishers Weekly calls her second book of essays, So Sorry for Your Loss, a poignant personal exploration of grief. She studied English literature at UCLA. and has appeared on ABC's 2020, CBS' We Are Austin, Chicago's WGN, and Texas Standard. She's written two comic books for Blue Water Comics about legendary superheroes Marilyn Monroe and Elizabeth Taylor. She lives near Austin, Texas with her husband and son. My executive producer, Anna Jaworski, discovered Dina's book, So Sorry for Your Loss, at the Larkin Owl Bookstore in Georgetown, Texas, and she was touched by how Dina and she both lost their mothers in 2018. Dina, thank you so much for joining us on Bereaved But Still Me.
Dina Gachman:Thank you for having me.
Speaker 02:Let's start by talking about your mother. What did she discover and when?
Speaker 01:My mom was diagnosed with stage four colon cancer in the spring of 2015, and it was about five weeks before my wedding. So that's when she got the diagnosis. We didn't really know what to expect. We sort of hoped that there was going to be a cure and that she'd be fine. We didn't really know what that colon cancer meant when she Really, typically you have about five years. And then she was on chemo and did all kinds of procedures until the fall of 2018 when she died.
Speaker 02:I think a lot of families, when they find out that someone in the family or a parent has cancer, there's always that moment of, well, maybe it's not like everybody else. Maybe this will be different. Maybe there'll be a cure. I sense that you had sort of that ongoing hope, right? Can you talk about that for a second?
Speaker 01:We did. I mean, I come from a very, very close family. My parents were high school sweethearts. I'm the oldest of four daughters. And so the diagnosis was extremely devastating for us as it is for anyone who has a loved one that hears that. But we definitely held out hope until the very end. I think as the years went on, it was about three and a half years to four years that she was on chemo. As the years went on, we started to understand that, okay, this isn't there's not a miracle cure. And we started to grapple with that and try and accept it. But at the beginning, we very much thought in a year, we're going to have a mom beats cancer party. We even put that in our iPhones. It's like a good little good luck thing. And we really were like, okay, she's going to, you know, as people say, beat this and she'll be fine in a year. And we're going to look back and just think, oh, you know, we really got through that and it would be fine. That's what we thought.
Speaker 02:Well, you have other sisters. How are they taking this with you?
Speaker 01:I'm the oldest and we were all devastated. My third in line sister, Jackie suffered from alcoholism for decades. And so when our mom was diagnosed, Jackie was not doing well. She wasn't what some people term like a functioning alcoholic. I mean, when she was drinking, it was just a whole different person. It was very hard to connect with her. So Jackie kind of dealt with it in her own way. She was living in New York, far away from us. And then my other two sisters, Amy and Catherine and I, just we really banded together. We texted constantly. We tried to help our mom. We tried to help our dad. So we just, you know, we were already close. It brought us a lot closer. But with Jackie, it was tough because she just couldn't, she just didn't have the ability to really be present.
Speaker 02:I can think about other families I know where there's a always somebody who's got something on their plates that sort of keeps them from participating. I'm not talking about alcoholism, about other things, but there's a line there between what you can do and what you want to do. And I often wondered about the people who are more on spot with what they thought if they had an issue with that.
Speaker 01:Yeah. I mean, I think, you know, everyone grieves differently, obviously. And so even without something like alcohol, In the mix, there could be somebody in the family that just doesn't want to face it, doesn't want to talk about it. Maybe they go into work mode. But I think all of us were very much like trying to be there for her. I was living in California. I flew to Houston as much as possible to just be with her during those years. So I think I kind of started reconnecting with Texas because I had lived away so long just by coming home and seeing her.
Speaker 02:In your book, you have a chapter called The Long Goodbye. Tell us a little bit about the hospice experience with your mother.
Speaker 01:It was very difficult. Anyone who's experienced hospice with a loved one, whether it's at home, which we had, or in a hospital, knows how agonizing it can be. But she was still doing her chemo, which, you know, the chemo had sent her into the hospital multiple times over the years. It was just very rough on the body. And this was... Like early November, 2018, she even had an experimental procedure set up, but she just wasn't doing well. And I was actually in Houston and the day I left, she was really, really sick. I went back home and like a day or two later, she went into the hospital and they basically found out that her colon had torn and there was nothing they could do. That was kind of the end. And so then I flew right back and that's when. Basically, our choice was she stays in the hospital or we bring her home. So we chose to bring her home and just get her out of the hospital with the beeps and waking her up every, you know, two hours or what it was. But it was it was incredibly difficult. And we had no idea what to expect in America. It depends on what your insurance is, if you have insurance. And, you know, what my parents had was meant that my sister and I, like we would be giving the medication and we would be basically there with her and a nurse would come by maybe twice a day, if that. So we were very shocked, totally shocked by that. We thought it would be like a movie, you know, where there's a nurse there all the time helping us. And that was 100% not the case.
Speaker 02:Excuse me for giggling, but I definitely, yeah, I get that.
Speaker 01:Oh, for sure. I mean, the chapter has humor in it because I don't know how else you can sort of face this and also read about it without some dark humor. So we were completely... just exhausted and I barely knew what day it was. So it was eight days of at-home hospice. And it was, I say this in the book, but the thing about hospice is you don't want your person to die, obviously, but then watching them slowly die is excruciating. It's an excruciating way for you to live. So it's this really tough conflict of like, of course you don't want them to go. But by the end of the eight days, my sisters and I were like, I don't know if we can do this another night. Like it just really saps you of everything. So That was probably the toughest eight days of my life, for sure.
Speaker 02:What was the learning curve like? I mean, it's not just giving medication, and I'm pretty sure medication isn't just a pill. So what did you have to learn to be home with her in hospice?
Speaker 01:Yeah, it was like a liquid morphine. So we had to make a chart, which was very illegible.
Speaker 03:Because
Speaker 01:none of us are super type A. So a barely legible chart where we could just remember like, okay, every two hours we have to do this. And it was terrifying because that responsibility of like, what if we are five minutes late or what if we lose it? It was a horrible responsibility to try and keep her out of pain. But we learned and we figured out how to do it. We did lose the morphine one day, which was terrifying
Speaker 02:and
Speaker 01:led to some dark
Speaker 02:comedy. What was that like?
Unknown:Yeah.
Speaker 01:well we had a cabinet we put it in because my nephew was really young obviously we were going to put it in a high cabinet and we went to get it and we couldn't i mean it was absolutely terrifying we were like beside ourselves i literally went outside it was in the evening and dug in the trash cans like no i mean yeah i was digging in the trash cans our family friend came and saw me digging through the trash can and we found it it was on the table by her bed the whole time um one of us that's
Speaker 02:where it always is right
Speaker 01:No, we put it in a high cabinet. I know, but
Speaker 02:it's always
Speaker 01:where you don't expect it, right? Exactly. We did not expect it to be there. So it was very scary. My heart still races when I think about it.
Speaker 03:Sure.
Speaker 01:But the learning curve was just, I guess, learning to sit with it really was the hardest thing. And it meaning the fact that our mom is dying in the house. And we got to hold her hand. We got to say everything we needed and more. Yeah.
Speaker 00:You are listening to Bereaved But Still Me. If you have a question or comment that you would like addressed on our program, please send an email to Michael Lieben at michael at bereavedbutstillme.com. That's michael at bereavedbutstillme.com. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. The opinions expressed in the podcast are not those of Hearts Unite the Globe, but of the hosts and guests, and are intended to spark discussion about issues pertaining to congenital heart disease or bereavement.
Speaker 02:In the first part, we talked about you and your family losing your beloved mother, but you have another massive loss that you've suffered. Tell us more about that.
Speaker 01:So my mom died in the fall of 2018. And then at the very beginning of 2021, my sister Jackie, who suffered from alcoholism, died. She was 39. And thank you. And she had suffered for years and years and years to the point where she was constantly in rehabs and detoxes. People were constantly sending me messages like, your sister's sleeping in a park. I mean, it was bad. And so we had always feared getting the call. I call it the call, like in all caps. Sure. but it never came thank goodness and for the year before she died she actually got sober she finally got sober again and it was wonderful and we were talking all the time and she was back to herself and we laughed and we were trying to plan a trip to get together so when we got the call it was i don't know it was a shock well because she had sort of disappeared for maybe about five days, so we knew what was going on. But it was a call that it actually happened, the thing that we feared for years actually happened, and so soon after our mom. So we were all completely just had no idea even how to take that first step into that second grief.
Speaker 02:Do you think that it was somehow related that she had to deal with her mother's loss and on top of everything else she had to live with?
Speaker 01:I'm sure that... that didn't help and that's one of the hard things about losing somebody in this way you know my sister was alone in a hotel room when she died and
Speaker 03:we
Speaker 01:have no way of knowing what her last days and hours were like we just will never ever ever know i ha i know who she texted i actually made some calls but i don't know i don't you know it's very hard to say i know we've my dad my other sisters and i have all racked our brains of like what could we have done could we have texted more or what was going through her mind. But the hard part of this kind of loss is like, you just have to kind of accept that you're just never going to know. And that's not easy.
Speaker 02:No, it's not. But I want to just add there that I don't think you should be beating yourself up over this. I don't think it's the sort of thing where you can say, what could I have done? Whatever it was, was, and that's part of the acceptance. But I don't think you have to walk around the rest of your life thinking it could be different if only I had, because you didn't. And it doesn't matter.
Speaker 01:Yeah. Yeah. That's very true. And I appreciate you saying that. And that's something that we've all definitely come to terms with. I mean, it took us a while, of course, my dad, especially because they were super close and she told him everything. I mean, she always called when she was in trouble. And so he, of course, really beat himself up. But now we've, we've come to that realization that like there's on, there's nothing we could have done.
Speaker 02:Let's talk a little bit about a term that you gave me when we first met, ambiguous loss, which is not necessarily the loss like death. So talk more about that with you and your sister.
Speaker 01:So I learned about ambiguous loss as I was doing research for the book. And I interviewed a lot of people in the book, both professionals, so palliative care physicians and therapists. And then I also talked to just regular people about their losses. And one of the people I talked to was my friend Al. And She had lost her dad, and he had actually been kidnapped, and it was pretty bad. And so she told me about ambiguous loss, and she said that when she learned that term, it helped her process what she had been feeling about her dad all those years. And when she explained it to me, it made so much sense. It's basically a grief that happens not from a death, but from... change in the relationship so whether it's substance abuse or mental health or an estrangement or in her case you know a kidnapping there's no funeral right there's no death but you're feeling grief you're feeling bereft and it really helped me once i learned that understand all the emotions that went along with loving my sister all those years it was very helpful
Speaker 02:would you say that your relationship with her was an important piece of your life?
Speaker 01:Oh, of course. Yeah. I mean, Jackie, I mean, it got harder as, as we got older because it's just, you know, she just, like I said, she just was completely different person when she was drinking, but when she was little, we were very, very, very close and she slept in my bed and she was, you know, I was six years older than her. So she was attached to me for a time and we had wonderful times together. I mean, we went on family trips and we all can remember. the old jackie or the real jackie right and there's people in my life like my husband never really met that jackie and so that's something that my sisters and dad and i hold really precious is that we know like we know who she was and some people may see her and think oh that she was crazy or she looked drunk or whatever it was but we know the real her so The relationship was and is still very important in my life because I still have her picture right here next to me on my desk. I talk to her all the time. I tell my son about her. So she will always be important.
Speaker 02:I think it's that gap between the real person and the person that they've become. I think that's what makes ambiguous loss so difficult because you're mourning for something that used to be. Yeah. But at some point it could also be again. And so there's that combination of mourning and hope. That's just awful, awful.
Speaker 01:It really is. And it leads to so many, I mean, like I said, I didn't understand my emotions for so many years. It was anger and stress and sadness and just name the emotion. And it was there in a big ball inside of me because yeah, there's nothing you can do about it. There's no ritual. It's just, you just have to sit with it.
Speaker 02:Now, how was that different from the anticipatory grief that you suffered in preparing for losing your mother? You knew what was happening with your mother. There were no surprises there.
Speaker 01:It didn't soften the blow. I'll tell you that. No,
Speaker 02:that's not my intention. But ambiguous loss and anticipatory grief are not quite the same thing, although I would say they're related.
Speaker 01:Definitely related. I think the anticipatory grief with my mom is you know and sitting there and knowing exactly what's coming down the road right so there was no moment there was no moment of shock really i mean obviously when it happened it was more of just a deep sadness i would say whereas with jackie even though i had that sort of ambiguous loss of grieving her all those years it was such a shock it was just a different kind of thing and but i think part of ambiguous loss is almost like you're brain and your body and every you're preparing yourself for something that may happen so we had that with us you know we all did because it had been there for so long so i think it probably colored the grief a little bit
Speaker 02:i was thinking that anticipatory grief comes with a certain sense of release at the end for the person who's gone and and relief for the people who have to live with it and who have been giving care and are working themselves down. I've taken some flack for talking about relief, but I can tell you in the case of my mother and in the case of my father, both of whom we lost to Alzheimer's and in some sense to my daughter, my daughter's grief was more ambiguous because we always knew something could happen. She had a heart condition and she had... epilepsy and autism. We always knew something could happen, but when it did happen, it was different than when my parents happened. And in each case, I would still talk about a certain release for them from the waiting and a relief for us because now we no longer had to do the horrible things and we could focus on remembering the good things.
Speaker 01:I think that's a hundred percent true. And I, I mean, I know people, I can see why people would give you flack, but I a hundred percent don't think that should be the case. I've heard many, many people talk about that, like sense of not relief, like, oh, hallelujah. It's not that it's more just even after hospice with our mom, like, of course we were buckled to our knees, devastated, but But the fact that we could throw the morphine away, you know, we could maybe sleep maybe a little bit. It was a sense of like, okay, now we can grieve her, right? And not have this other stuff that's just so hard. So I totally understand that.
Speaker 02:My daughter would go to sleep at night and I'd wake up in the middle of the night and just go look at her, make sure everything was moving. Of course, it There was no need to. It was silly. But that was the kind of tension that I was under. She had this harmonica that she loved to play with. When I woke up in the morning to her banging on the harmonica, I'm thinking, well, that's good. Not really. I mean, you know, but as a parent, you know, better they should make a lot of noise than the alternative. So I totally get that. And for those who want to give me flack, I'll take it. But there is a certain... relief there and it allows me to go on and remember the good stuff because there's tons of good stuff and be unfettered by the bad stuff. So here you go.
Speaker 01:I think that's true. And I think with my sister too, one of the phrases that I really don't like in grief is at least they're not suffering or they're in a better place. You know, those things are upsetting to me. And of course, with my sister, I would hear that occasionally. And obviously I'd rather have her hear the But not having to worry about her constantly, which I did for years and years and years, and have my dad worry about her constantly and fear every phone call and fly out to sit by her hospital bed. To not have to do that, there is kind of a sense of peace, I guess you could say.
Speaker 02:Yes, that's better. I'll accept that. It's better than relief. I often think of it as sort of just a... You know, a big sigh of, well, that's over. But in a way that's positive. I want to think of the good things. I want her to be with me every single minute, and I want her laughing and smiling. And I have that now.
Speaker 01:Yeah, I agree. I understand that 100%. People need to talk about more is that kind of sense of like, okay, now you can live with the good memories. Absolutely.
Unknown:Absolutely.
Speaker 02:If you've enjoyed listening to this program, please visit our website, heartsunitetheglobe.org and make a contribution. This program is a presentation of Hearts Unite the Globe and is part of the Hug Podcast Network. Hearts Unite the Globe is a non-profit organization devoted to providing resources to the congenital heart defect community to educate, empower, and enrich the lives of our community members. If you would like access to free resources pertaining to the CHD community, please visit our website at congenitalheartdefects.com for information about CHD, hospitals that treat CHD survivors, summer camps for CHD families, and much, much more. Dina, you're a professional author. Tell us about the kind of writing you do and why you wrote So Sorry for Your Loss.
Speaker 01:So I've been a journalist and author, gosh, it's been years. It's all I've ever wanted to do since I was Honestly, little. It took a while to get to the point where I could call myself a professional writer. I waited a lot of tables. I had all kinds of jobs and wrote on the side. But then my first book was published in 2015. And I did a lot of journalism, reported pieces. I started writing some humor, a lot of personal essays about my own life. But then I would write about just people I find fascinating. I did a lot of culture and entertainment writing. I never wrote about grief. until about a year after my mom died. And I wrote an essay about her. And then I started noticing when I would write about grief, how many people wanted to share their stories. And it really struck me. And so a couple months after my sister died, I started thinking, okay, I have these two deep losses back to back. And maybe I have something to add to the conversation or the bookshelf with my experiences. And I wanted to add some humor and make it part memoir, part reported. And so I thought, okay, maybe I can, maybe there's a book about grief in me. And so I started working on it.
Speaker 02:Well, I'm glad you did. There's, you definitely have a lot to add to the conversation. I've met you now twice, but anyone who knows you, I think would know that you have something to say and it's worth listening to, which is not common, not around these parts.
Speaker 01:Thank you. Yeah. I just, there's so many wonderful grief books. I guess I just, I wanted to put something out there that As a journalist, I wanted to learn more about it. So I didn't want it to be only my story, although my story is kind of the thread that connects it all. But I wanted to learn more about, I mean, there's a chapter on pet loss. There's a chapter on hospice. There's a chapter on food and grief, signs and symbols that get us through. And so I just really wanted to explore it as a journalist. And it helped me a lot to learn to accept it in my life.
Speaker 02:Well, I'm going to just add anyone who's ever sat shiva knows all about the connection between food and grief.
Speaker 01:Oh, yeah.
Speaker 02:You talked about learning along the way. What's the greatest lesson you learned from putting your book together?
Speaker 01:Oh, my gosh. There's so many. You know, one of them is learning to, as I guess the experts call it, integrating grief into your life. And I think when this whole thing first started for me, I thought, okay, you grieve. There's five stages. You're always going to miss them, but you'll move on. I think I just had that kind of typical view. And then once you're thrust into it, you realize, okay, there's no five stages. And this is something that's going to be with you every minute of every day. But that doesn't mean you have a joyless life. And so that was a huge... learning curve for me to understand that like, oh, I'm now a person forever more that carries grief along with me every single day of my life. But I have a ton of joy. I'm happy in my life. But I think that really was something that I did not expect.
Speaker 02:Well, I appreciate what you said about joy because my mother, for example, had a wicked sense of humor. She and my aunt and I could trade jokes that we could never tell in good company. And when I think of my mother now, you know, it's been less than a year, but when I think of my mother now, I like to think about the times when we laughed. One of my earliest memories, I was just a baby. I don't know what was going on. My mother was on the phone and laughing and it seemed like forever. And that was such a great moment. And I... I carry that with me because I want to smile when I think about mom. I want to smile when I think about dad. And I certainly want to smile when I think about my daughter. So it's really, really important that you talk about that. And I'm glad that you talked about, you thought you'd move on, but you really don't. The tagline for many years on this program is, Moving forward is not moving away because you don't really move on. You continue going forward because that's life and that's time. But you always have somebody with you now that you've integrated into your being in a way that you hadn't before.
Speaker 01:Yeah. Yeah. I think when my mom first died, somebody had said to me, oh, you know, the grief never leaves you. And I was so mad. I was like, how dare they? What a rude thing to say. But now, of course, I understand that they were right. But at the time it was, I was like, why would they be so rude? Like they're cursing me or something. But As any person who lives with grief knows, it doesn't just fly away somewhere and nor should it, right? Because then you're not remembering your person.
Speaker 02:Exactly. We also know that people tend to say horrific things in the name of being kind or being thoughtful because they feel they have to say something. Now, I accept that and I don't mind it as much as I used to, but some of our more religious conversations, people have brought up Job and I love that because For anyone who remembers the book of Job, his three friends were excellent for the first week when they sat there and said nothing. And then they got up and ruined it by talking. And the point is that knowing what to say or what not to say is very, very difficult, especially if you've never experienced your own loss. So I forgive those people. I do. But it's hard when you're in your own grief to accept some of the horrible things that people say in the name of being nice because they're just dumb.
Speaker 01:yeah it is it it is hard and that's what the reason the book is called so sorry for your loss is because that phrase used to make me so angry after my mom died and people would you know write it on Facebook or say it they'd say so sorry for your loss condolences and it just felt that it didn't reflect my pain and it felt very cliche and it made me so mad and part of the other learning curve of the book is realizing people do not know how to talk about this. And so they just say the convenient phrase because they're so scared to upset you. But what I appreciated when people would say like, this is so tragic, how heartbreaking. Cause to me that felt that reflected how I felt. I was like, Oh yes it is. Thank you. It is tragic and horrible. But I understand, like I kind of came around to understand that like people really don't know what to say, which is why we should be talking about it more.
Speaker 02:We should, and I think we should also spread the word that a lot of times saying nothing is better. We had a guest, a rabbi, early on in the program, and I asked him, what do you say to people? How do you start a conversation? And he said, tell me about your loved one.
Speaker 03:Yes.
Speaker 02:Because that takes the onus off of the questioner.
Speaker 03:Yeah.
Speaker 02:And then you'll talk about what you want to talk about, and they won't say anything stupid for the rest of the conversation.
Unknown:Yeah.
Speaker 01:That's, to me, I love when people say, what was your sister's name? Or telling me about your mom, instead of feeling like they have to make some big proclamation like that. It makes me so happy when people just ask their name. It's so wonderful because it's such an acknowledgement and then you get to talk about them. And so I agree with the rabbi.
Speaker 02:He's my brother. I'll pass it on.
Speaker 01:Oh, perfect. He's doing a good job.
Speaker 02:Yes. Before we leave, let's talk about where people can find your book or books.
Speaker 01:They can find it really anywhere books are sold. So your local bookstore, I love that your producer found my book at one of our local bookstores, Larkin Owl. That's amazing. And you can get it online. So Amazon, Bookshop, Barnes and Noble, anywhere you would normally either walk in or click and order, you can find it.
Speaker 02:Well, be sure to put that in the show notes where we can click and order. The book again is called So Sorry for Your Loss. Dina, thank you so much for joining us on Bereaved But Still Me.
Speaker 01:Thank you so much for having me.
Speaker 02:And that concludes this episode of Bereaved But Still Me. I want to thank Dina Gashman for sharing her experiences with us. Please join us at the beginning of the month for a brand new podcast. I'll talk with you soon, but until then, please remember, moving forward is not moving away.
Speaker 00:Join us again next month for a brand new episode of Bereaved But Still Me.
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