Carmen’s dad learned he had pancreatic cancer earlier this year. His reaction took her by surprise, and the family dealt with the possibility of his death in different ways. Then, an occupational therapist who works with the elderly talks to Juleyka about how to care for our aging loved ones.
Featured Expert:
Mariella Zuñiga is a geriatric occupational therapist and consultant with expertise in Aging in Place, Client Engagement in Successful Aging and Innovation in Longevity. She works at Medstar and with the D.C. Department of Aging and Community Living in implementing the Safe at Home Program, which provides assessments and safety adaptations in and around the homes of qualifying seniors and adults with disabilities. She also collaborates with profit and non-profit organizations in promoting global innovation in longevity, elevating initiatives in wellness and driving change perception on the needs of older adults. She is an active contributor in the aging ecosystem, she is passionate about brain health, technology and transformative innovation in the 50+ market. As Ambassador of Aging 2.0 DC Chapter, she motivated and effectively mobilized volunteer groups to promote positive, healthy aging and strengthen the engagement of older adults in communities through collaborative events involving public and private sectors.
If you loved this episode, be sure to listen to When's the Time to Write a Will? and Dad's Mental Illness On His Own Terms.
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Juleyka Lantigua-Williams:
Hi, everybody. Juleyka here. Before we get started, I want to invite you to come on the show. If you’re an adult child of immigrant parents from anywhere in the world, I’d love to talk to you about the conversations that are necessary but challenging right now. What are you getting into with your loved ones? Holidays? Politics? Money? You know we get into it all. So, send us an email or a detailed voice memo to hello@talktomamipapi.com. We can’t wait to have you on.
Hi, everybody. Today, my guest is Carmen. She grew up in a Mexican and Middle Eastern household. Earlier this year, Carmen’s dad was diagnosed with pancreatic cancer, which can often be fatal. The news shook the family and amidst the COVID-19 pandemic, they all had a lot of adjusting to do. Let’s get into it.
Carmen: My name is Carmen Habib. I live in San Diego and I get that all the time, Carmen in San Diego, ha ha. I am a dental hygienist, and I am in dental sales, and I love it. I am half-Mexican, half-Middle Eastern, and growing up in my house, we always called my dad, dad, and then my mom, she had many nicknames in the best way possible. Even called her by her first name. Don’t ask me why, but that’s what it was growing up in my house.
So, my mom passed away when I was 13. My dad, who is… He’s, what? Going to be 71. He’s the Middle Eastern side. So, he got diagnosed with pancreatic cancer in… What would that have been? Probably March or April. Pancreatic cancer is usually a death sentence. He’s been a trooper and doing well so far. Not just that, but then also with the pandemic and everything, it’s been a crazy, crazy year, to say the least.
When COVID started, nobody knew what it was, so everybody has a different opinion, right? Your brother has a different opinion, your dad has a different opinion, but when you have a parent that’s ill already, it’s such a new thing for them, it’s… Nobody likes getting old. And you know, when you’re told a diagnosis like that, it’s devastating for everyone, but I can’t imagine for him. So, on top of that, to tell him, “Hey, by the way, you also can’t leave your house, and you need to wash your hands, and you need to wear a mask.” I think it was just a lot for him all at once.
When he got diagnosed, I did live with him. I lived with my younger brother, my dad, and then got married, and so I think I moved about April. April, May. So, it was pretty quick. I actually moved out of the house right when he got diagnosed, which was not helpful either. You know, my dad has always had the idea that once he gets any kind of diagnosis, this is even when he was younger, he’s just like, “I’m done. It’s over.” You know, what I think is such a Middle Eastern way of like… I guess I don’t know. Obviously, I’m not sick, so I wouldn’t know. I mean, I feel like I would just be super annoying and like, “Help me.”
He’s just such a trooper and he’s more about like, “This is how much money I’ll leave you guys. This is how to handle the store. This is how to handle the house.” And it’s such a mature way, but at the same time, he… I mean, his prognosis is actually great. Especially for someone with pancreatic cancer. So, I think that was the difficulty when it started. He was just… He just heard the diagnosis and was like, “Boom, boom. Okay, this is it for me.”
Right now, I think we’ve pumped him up to the point where he’s optimistic, we’re all optimistic. He’s got a fighting chance. It’s a long road. It’s a lot about patience, and that’s hard when you’re having symptoms every week. You know, it’s hard to see the end of the tunnel.
At the beginning, when he was… I guess gave in the towel, we were very upset, because we’re like, “No, no, no. Hold on. You don’t get it.” Even though he did. I think it was just how he grew up. Yeah, I talk about that with my brothers all the time. I’m like, “If I got cancer, I would just… I think I’d be super needy, super…” I mean, who knows, right? But this man is just… When he calls me, it’s about, “How are you and Ben? How’s the house? How are you guys doing?” Like I’m blown away at how independent he is.
So, my dad has been a widower for a long time. Maybe he’s a little more pragmatic about it because he’s dealt with my mom’s death, and maybe he’s just more realistic about it. You know, through the years, we’ve talked about obviously my mom’s death, and I think that’s pretty… something that we’re pretty open about in our family, like we don’t… Thinking about it now, it’s crazy how much we really do talk about like, “Oh, when your grandma died, and when your mom died,” and how things happened, and the diseases in our family. If he is feeling any sort of way nervousness or sadness, he doesn’t let it show. And I hope that when that day comes for me, or if I ever get something like this, I hope I can do that for my kids too and be that strong.
Lantigua-Williams:
Carmen’s story took me back to difficult moments in my own life, when the ground falls from under you and nothing makes sense, like when my grandmother passed, and I had a really hard time feeling stable on my own two feet for a while. Carmen sharing her family story also brought up the difficulty of accepting illness and facing the possibility of death, and we know that so many of these conversations have been happening this year especially. So, I’m so thankful to Carmen and to the expert who stopped by to help us out.
Mariella Zuñiga:
My name is Mariella Zuñiga. I’m an occupational therapy consultant with more than 15 years experience in rehab services. Currently, I provide occupational therapy in home-based settings here in Washington, D.C. I advocate for older adults and also consult with startups and tech innovation in the aging and longevity space.
Lantigua-Williams:
What did you hear in Carmen’s story?
Zuñiga: I heard about the diagnosis of pancreatic cancer, and that’s one of the most serious diseases or conditions that one could receive, and that’s very devastating at any point of your life to get that. So, it resonates for me, because I work in healthcare. I’m always involved with people who are sick, whether in early stages, or towards the end, and having that conversation on how to plan for the later phase, that’s a very difficult conversation. Talking about death and what would be is taboo. It’s almost like you’re calling in the spirit of death.
It’s like no, it’s not, but I do encourage the sandwich generation, the generation who cares for the parent and the children in the family, so you’re being sandwiched by two generations, to start thinking of that conversation. How are you going to approach it? Because you don’t want to be in the middle of a medical crisis and that’s when you’re making a decision. And a lot of us should have that conversation with our parents, whether or not they’re sick right now.
Lantigua-Williams:
Right. When you get the diagnosis, how would you suggest that a family prioritize what happens next, and what type of perspective should they bring to bear on the decisions that they’re going to make once they get a diagnosis?
Zuñiga: So, the patient or the person who received a diagnosis, they could… Of course, they would involve the doctors for education. But it’s also having the… owning the diagnosis. How do I want the doctors to treat me? I’d like to know what… I mean, learn more about the condition. If it’s going to be like a terminal illness, what are your preferences? Do you see yourself being in a nursing home? Or in a palliative care? Would you stay at home? And how long do you plan to receive the medical care? There might be a certain point when it’s very difficult for a person to swallow, to dress themselves, and we want to give them the dignity in making sure they are involved in their care in the treatment that they want, like to uphold their spiritual wishes.
You want them to have a say what values, whether family or personal, that will come into play.
Lantigua-Williams:
So, in Carmen’s case, her dad had a very different immediate reaction, which was basically, “Okay, I guess I’m done.” And I’m laughing about it because her and her siblings’ response was, “Wait a minute. What are you talking about? You’re not done. Let’s figure this out.” But my grandmother at 92 had a really bad fall, broke her hip, and was bedridden for many months prior to passing, and she would often say, “I’m happy. I’ve had a great life. I’m good. I can go. I’ll be fine.” And it was basically the rest of us saying, “We’re not ready. Don’t say things like that.” Precisely because we thought we would be inviting the thing in if we said that.
Zuñiga: Right.
Lantigua-Williams:
That clearly seems to be cultural, so how do you deal with sort of like the cultural components and the cultural-based reactions that people have to illness? And to a terminal diagnosis?
Zuñiga: I would suggest getting some professionals, because if it’s family, everybody is in the same boat, is in the same silo. But having someone like a third party, who would be able to talk about planning, let’s say just putting in the simple power of attorney and advanced directive, because those two are very important. If you don’t have it, sometimes in the hospital they… It’s very hard to make the decisions right away. But having someone like a third party, someone that they trust, that they could trust. Ask them like, “You know, I’m kind of thinking about this because I heard, let’s say Uncle Tony had a difficult situation or there was a hard death. I would want to be more prepared about that. What are your thoughts?”
Make it about I’m coming from a place of love and I want to honor your wishes, but I want to know how to go forward about it, so help me understand. So, coming from that, like it’s how you deliver it. But it would be helpful to get your allies, such as your siblings, to kind of plant the seeds. Because this is not like a one time conversation.
Lantigua-Williams:
Right. So, that actually brings me to the next interesting thing, which is that Carmen says, “My dad has been very independent and self-reliant.” Especially because her mom passed some years ago. And so, he’s used to not relying on anyone or needing really anyone to live his full life, and now her and her siblings want to be more supportive. They want to help more. So, can you talk to us about the idea of aging in place, and how children of immigrant parents, and their grandchildren, and their extended family, can support them in doing just that while also preparing for end of life planning and also being prepared in case of a diagnosis like this one?
Zuñiga: Right. So, aging in place is modifying your home or your environment so that you could live optimally, thrive optimally, independently, and safely at home for as long as possible. So, you try to set up the house like everything would be accessible in one floor. Because if a person gets tired going up and down the stairs, then they won’t have any more energy to do what’s important for them, like let’s say later in the afternoon. So, you want to make everything accessible in their mainly living area.
So, the bathroom should also be safe, because as a person advanced in age, the risk for falls increase, so you want to set up for grab bars, a higher, like a comfort height toilet seat, and then later on, you might want to tell them that you may be open minded to using a cane or walker, just to help them with walking and helping them be more independent in their home. There might come a time when the bedroom, maybe upstairs, would have to be transferred on the first level, just to make it easier, and then the regular bed changed into a hospital bed.
Lantigua-Williams:
Got it. Got it. All right, I’m gonna ask you one final question. I just want you to sort of like list some of the misconceptions that the younger generation might have about the elderly, so that we can start to pay attention to whether or not and how we’re also making decisions based on those misconceptions.
Zuñiga: People think that when you’re over 65, you are unable to contribute to society. There’s also a misconception that 60 and above can no longer work as fast or engage in a work environment with the millennials. Also, the misconception that older adults always use a cane, or a walker, and they need to go slow, but in my experience and what I’ve seen, some of the most robust adults, they still swim at 90, they still run, and sometimes I would be so amazed that… Wait, what did you have for breakfast? I want to have what you had. Because it’s like, “You’re more hyper than me.”
And one thing that really struck me, I was working with this 97-year-old, and I said like, “What’s your secret?” And he said, “Well, I’m a pescatarian. Very active. I’ve been a swimmer. And I was in World War II. I flew a fighter plane. And when bullets were coming at you,” he told himself that, “If I survive, everything else would just be a bonus.” So, I was like, “Wow, that’s really, really very insightful.” Yeah, so you don’t let stress rule your life. So, at 97, he was so sharp and most of them, I even encountered people at 60 going for their next degree. So, it’s not like when you’re in your golden years you’re just knitting and rocking in a corner, and just reading a book.
These are people who have a treasure trove of wisdom, and from their experience, they could share with the younger generation how life should be lived. And I think as a generation, we worry a lot, but for them having lived that, they really just go for it. They say what they want. And they just do what they want. And it’s very, very inspiring.
Lantigua-Williams:
Thank you so much for coming on and sharing such useful insights with us.
Zuñiga: Thank you, Juleyka. I really enjoyed it. Thank you.
Lantigua-Williams:
All right. Let’s recap what we learned from Mariella. Think and plan ahead. Don’t wait until a medical emergency or a diagnosis to talk with your relatives who are older or ill. How they wish to be cared for should be something that is thoughtfully considered and planned for. Begin the conversation early and keep talking. Explore all your options, from treatment plans to strategies for aging in place, there are so many choices. Make sure that your choices are based on what’s important to you and your loved one. And remember, encourage agency. Older adults are independent, self-reliant, and very much engaged in their own lives and well being, so they have an important role to play in decisions about their care.
Lantigua-Williams:
Thank you so much for listening and for sharing us. How to Talk to [Mamí and Papí] About Anything is an original production of Lantigua Williams & Co. Virginia Lora produced this episode. Michael Castañeda mixed it. Micaela Rodríguez is our founding producer and social media editor. Cedric Wilson is our lead producer. I’m the show’s creator, Juleyka Lantigua-Williams. On Twitter and Instagram, we’re @TalktoMamiPapi. Please subscribe and rate us on Apple Podcasts, Amazon Music, Spotify, and anywhere you listen to your favorite podcasts. Bye, everybody. Same place next week.
CITATION:
Lantigua-Williams, Juleyka, host. “When Papí Gets A Fatal Diagnosis.”
How to Talk to [Mamí & Papí] About Anything,
Lantigua Williams & Co., December 14, 2020. TalkToMamiPapi.com.