Though she was a primary caretaker, Sandra had a hard time knowing what to say to her dad at the end of his life. And Oceana Sawyer, a death doula, speaks with Juleyka about acknowledging death with dying loved ones, and taking care of ourselves as we care for them.
Featured Expert:
Oceana Sawyer is a professional End of Life Doula who writes and speaks on the liminal space of active dying and grief. She is currently researching and holding space in the realm of embodied grieving in a context of somatic abolitionism. She facilitates grief circles, affinity groups for people of the global majority as well as deliver presentations on navigating big life transitions through somatic processes. Her latest book Life Death, Grief, and the Possibility of Pleasure, is available online and at bookstores near you. Learn more about Oceana's work here.
If you loved this episode, listen to When Papí Gets a Fatal Diagnosis and Carrying Out His End-of-Life Wishes.
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uleyka Lantigua:
Hi everybody. Today, we're really happy to welcome Sandra. Sandra's father passed away earlier this year. She was one of his main caregivers. And the whole experience was so hard for her, emotionally and physically. And even though they'd been really close her entire life, expressing everything she wanted to say to him before he passed was so difficult.
Let's get into it.
Sandra: My name is Sandra Almeda. I'm 33 years old, born and raised in Miami, Florida. I'm a teacher, I'm the daughter of two immigrant parents. My mom's from El Salvador. My dad was from Cuba. And growing up, I called my parents, mamí and papí.
We grew up in a very humble home. I was extremely close to my father. He was an extremely involved parent, president of the PTA, the president of ESAC at my elementary school. He was an extremely independent, lively, hungry for life person.
My dad was a lot older, 86 years old, driving himself to doctor's appointments, going to get cafecito, at the little ventanita, with his friends. He passed away in February. I really struggled and continue to struggle with how to care for myself in the middle of the pain and in the middle of the cartaking.
At some point he started getting random nosebleeds. He had also lost a significant amount of weight. So my dad went to go get blood work. The doctor called him the next day and said, "Call one of your daughters and have them take you to the emergency room now."
My dad was such a brilliant man. He was in the ICU at that point. My dad says, "Do I have leukemia?" He guessed exactly what he had. I wanted to run and scream out of the hospital room. But as a first generation child, you know that you have to step up for your parents and you have to be there for them in that moment. If he would've known that he literally had months at best, he would've gone in a bad depression. He even warned us about that. He told us like, "I'm scared I'm gonna get depressed."
For perspective, it's my mom, myself and my two sisters. We wanted to honor him and be honest that this was bad and that it was a battle. But we also wanted him to have hope. And that's why we never told him the time frame.
He decided to get treatment. The doctors were very explicit in that this would only buy us months at best. Nothing else mattered, except work and caretaking of my dad. “Your dad wants water. Your dad wants a little massage 'cause his feet hurt because a lot of leukemia's like aches and pains.” We became like nurses. I would walk away from my dad in the hallway and cry it out for a second and then come back and pretend like I wasn't just crying. It's a lot to watch somebody wither away like that.
When you know that your dad is dying, you feel this pressure. In still moments you feel like, "I can't just be still. I can't just be not talking to my dad. I don't know how many conversations I have left with him, I should be asking him questions. I should be asking him about his past. I should be asking him about his regrets. I should be asking him about his pride. I should be asking him his wishes, what he's achieved. I should be having these life-changing conversations with him because I don't know how many I have left."
But you're balancing being in such pain that sometimes you do want to just be still. You're in this uncomfortable space of not knowing which way to go because, in that time, it's all about your parent. What you need essentially, doesn't matter.
We've always been a family. That's very open to express emotions. But I have to say during this time there were topics that I wanted to touch with my dad that I felt I wasn't gonna be able to keep it together. And I did not want to be crying in front of him. So I would just not touch the topic.
The thing I most regret not telling my dad and hopefully he hears it now I asked him, "What's your biggest regret in life?" And he told me, "My biggest regret in life is that my parents died when I was so young," it was in his twenties. "And I wasn't able to give them everything that they deserved." I wish in that moment, I would've said, "But Dad, you gave us everything." But because it felt very final, you gave us everything. And so, I couldn't say it 'cause I wanted to keep it together for him. But I wish I would've said it.
Lantigua: I'm so thankful to Sandra for coming on the show and sharing her beautiful story with us. Just having gone through that and being open and raw about what she went through is so inspiring. I'm really so thankful to her for that.
In many of our families, it's really hard to talk about death at any given time. But it's especially challenging when a loved one that we've known our entire life is actually reaching the end of their life. So how can we as first gens speak openly about death with a parent, or a loved one who we know is dying? What can we do to be present for them in the ways that truly mean something to them? And how can we care for ourselves in the process? To help us figure it out. I called in an expert.
Oceana Sawyer::
My name is Oceana Sawyer:. I am a death doula, an end of life doula. And honestly, it was my father's passing that drew me into this work that was 12 years ago. Then, I got some formal training. I've been a death doula now for, I don't know, I guess three, four years now.
Lantigua: So first of all, my condolences on the passing of your father.
Tell me what it was that you discovered about yourself that helped you to say, "Oh, this is something I can do."
Sawyer: Well first, I just want to acknowledge this one thing. It's entirely ordinary. When you are there, you suddenly have a remembering, a recollection like, "Oh yes, this is what people used to do. They used to be at the bedside of the elder in the family who was dying and everybody was there." That is the thing I guess, that grabbed me was here is an ordinary moment in life that everyone is afraid of. And yet, it's really quite beautiful. There's this sort of stillness that opens up with this other human being who is doing probably the hardest thing they will ever do in a living body is they are exiting it. And yet, there's this kind of grace. I don't have another word besides mythical grace. There is definitely a presence.
And it's funny because when I experienced it with my father, I was like, "No, this can't be happening." And I'm as woo woo as it gets. Let me tell you even I was like, "No, this isn't happening." And I just said, hello to the ancestors. "Oh hello." They're like, "Yes, thank you for acknowledging us. And we're not really here for you. You can watch, but please don't get in the way we are here for him."
Lantigua: I'm sure you had a lot of responses to Sandra's story.
Sawyer: I wanted to wrap her up in my arms because the role of the family caregiver is probably the hardest role there is. Everybody has this experience, no matter how good the death was and it could be this glorious, love filled experience. And afterwards, people have regrets. What I said to myself and I'm saying to Sandra is it's okay, you are going to have regrets, that's normal. And you did as good as you could do, as well as you could do in the moment. And you can't look back hindsight and go, "Oh man, I should have done this," because hindsight it's crystal clear. So it's not fair to judge yourself.
The piece I want to get to in this particular story, in Sandra's story was I just thought it was so fascinating that she talked about how emotions were freely expressed in the family throughout life. And then, in the end, they chose to do this other thing. By the way, that is also not unusual. People think, "Oh, they're dying, I should have it be as stressless as possible. I don't want to upset them. I don't want to say the wrong thing." And people end up not saying the things 'cause they don't want to say the wrong thing. But there's almost no way to say the wrong thing.
In fact, when you actually confront the dying, the end is scary, I understand it, nobody wants to talk about the finality of death, but there's actually a release that can happen in confronting it with the person. Because here's the truth, most people they already know they're dying.
Lantigua: In themselves, in their body.
Sawyer: Exactly. Even if they don't have a diagnosis, people think it's taboo to say, "I think you might be dying." Let me tell you what happened to my mom with my mother, my mother died of stage IV cancer. She would say things to me like, "Do you know where the money is?" Or, "Do you think Philip is gonna to be okay," my brother. These future things, she wanted to make sure were taken care of.
Lantigua: Future casting.
Sawyer: Exactly.
And I would say to her, "Oh Mom, you're fine." I would brush it off. But then it kicked in, my doula spidey senses kicked in. And so the next time she said it, I just said to her, "Okay, I get it, you're dying. How do you want it to go?"
Lantigua: Wow.
Sawyer: She did the sound. She said, "Mm." And when your Black mama says to you, "Mm-"
Lantigua: It's an acknowledgement.
Sawyer: You've hit it, you exactly nailed it. And then, she changed the subject. But that moment of pause and the, "Mm," was recognition. Everything changed from there.
Lantigua: Yes.
Sawyer: She was so grateful because what we did from there was we said all the things, we did all the things. And when she got the diagnosis, she was gone within seven days.
Lantigua: Oh my goodness.
Sawyer: But we had done three months of saying goodbye. Now it's not like my mom and I talked about her dying and what she wanted, but we did have a few conversations about, do you want to be buried? Do you want to be cremated? So she gave you some short answers, she didn't want to spend a lot of time on it, but it's okay. It was enough. And that's the other thing, if you're gonna lean into that acknowledgement with somebody like, yeah, this is it then, you have to be prepared to go at their pace.
Lantigua: Let me interject for a second because I want to first acknowledge that there has to be a mutual understanding and recognition. In all of the ways that the living who will remain are trying to comfort those who are going to pass, we should try not to exclude them. We should try not to keep things from them. We should have them be as engaged as they want to be and follow their lead.
Let's talk a little bit about the responsibility because, as you said at the top, Sandra bore a lot of responsibility as the principal caretaker. So are there ways that first gens can handle the enormity of the moment that they're experiencing collectively with their families? What is your guidance for that?
Sawyer: You need a team. And to the extent that you can involve other people in the process and give yourself breaks. I hear plenty of stories of people who end up being the only person that has the wherewithal to be the caretaker. People have jobs, or they have families, or they live in another town. So it does fall on one person. And even in that situation, you can call on friends, local hospice organizations. I mean, truly if someone really is in active dying, they should be in hospice. It just takes a referral from the doctor. And sometimes people don't have doctors, they're being treated basically through the emergency room. I hear this story a lot.
But what you do in that situation is, if you're in the hospital and they're getting ready to discharge the person you can ask, "Is there a social worker?" Every hospital has a social worker.
Lantigua: Yes.
Sawyer: Or, "Can I get a social worker assigned to this case? Because when this person goes home, there's not gonna be adequate care for this person. Are there other resources?"
Lantigua: So let me ask you a really practical question, which is that a lot of Black and Brown people are uninsured. Does it matter whether there is insurance or not in this conversation about getting the adequate care?
Sawyer: Well, yes. I mean, the short answer is yes. But even in that case, I will say that hospitals they have kind of a fiduciary responsibility to provide the best possible care they can. Now, of course, there's plenty of stories of hospitals, discharging homeless people out onto the street. But aside from that situation, if you are with someone who doesn't have insurance, you're the family member you can just keep asking the question, "What are the resources?" The hospital will likely be able to either give you a public one or a charitable one.
If they don't do that, you can actually start calling churches. If they can't provide that themselves, they will know of a social service that does. Also too, I know it's embarrassing, I know it's hard, but just start putting on loud speaker your challenges. You could start talking to your friends. You might be surprised what information or resources a person has. And that's another thing, people get into shame or guilt spirals around care taking people who are dying. And that's again, very normal. But, as much as possible, start talking out loud to people about what's going on and what you might need. It's also really better if you have a specific request of people. "Can you come and be with my father for an hour while I take a break? Can you go and get some groceries? Can you just sit here while I take a walk?"
Lantigua: So Oceana, my final question to you is how does the caretaker take care of him or herself after the passing? Because often we've pressed pause on our entire life to focus on the person who is passing. And then, we kind of like go back head first into it.
Sawyer: So in my book, Life, Death, Grief, and the Possibility of Pleasure one of the things I say is that all along the way, you could be looking for moments of joy. You could be cultivating moments of pleasure for yourself. I'm literally talking about stepping out of the room, walking into some fresh air, taking a deep breath and putting your attention on something beautiful for even just a minute. That is enough resource to get you through the next few minutes. Then, you are not completely burned out by the time the person has passed.
And so, what I suggest is that you ease in slow. Cut yourself some slack, give yourself some grace. There's no going back to how your life was before. Your life is already different. So now, what there is to do is to gently look for ways to create a new life for yourself. Go slow, take breaks when you can, treat yourself really, really well just like you would, your friend who lost their parent. You would bring them flowers. You would cook them food. You would just hang out with them.
This is another opportunity by the way, to give a specific ask. I hear this all the time too, "y friends act like nothing even happened. Nobody's calling me. Nobody's coming by. I didn't have no support." Well, that's because people are afraid of doing what you were afraid of doing, saying the wrong thing. We're so death phobic in this culture, we have no idea what to do around death so we freeze.
So, here's the thing you can do, you could give people specific tasks to do for you. And just know it's gonna take a long time, far longer than you think. And that's okay, that's normal.
Lantigua: Oh, Oceana you are the perfect person to have this conversation with. I'm so thankful for you. Really, thank you so much.
Sawyer: This is a delight. Thank you.
Lantigua: Okay, here's what we learned from Oceana: know that it is normal, your reactions, feelings, and concerns, when a loved one is dying can feel confusing, problematic, even shameful. All of it is entirely normal. Take comfort in that and do not beat yourself up about how you're feeling.
Acknowledge the end. Openly confronting the finality of death with someone who is dying can pave the way for emotional release, acceptance, even peace. Just be mindful to follow their lead. And remember, make specific requests for support. Turn to your network, family, friends, colleagues. Speak openly, clearly and concretely about what's going on and ask for support.
Monica Lopez: Thank you for listening and sharing us. How to Talk to Mami & Papi About Anything is an original production of LWC Studios. Virginia Lora is our show's producer. Kojin Tashiro is our mixer. Elizabeth Nakano mixed this episode. Manuela Bedoya is our marketing lead, and Juleyka Lantigua is the creator and host. I'm senior editor Monica Lopez. On Twitter and Instagram, we're @talktomamipapi. Bye everybody. Same place next week.
CITATION:
Lantigua, Juleyka, host. “Papí is Dying, And She Fears Saying the Wrong Thing” How to Talk to [Mamí & Papí] about Anything, LWC Studios., September 26, 2022. TalkToMamiPapi.com.