Podcast transcript:
Empowering Families - Critical Caregiving Conversations for the Sandwich Generation
Candace Dellacona: Welcome to the Sandwich Generation Survival Guide. I am your host, Candace Dellacona, and I am so happy to have our guest join us today, Dr. Ashwini Bapat from Epinee MD. I am really excited to have Ashwini here today to talk to you all, all of our listeners about I Ashwini's background and this sort of revolutionary approach she has taken with families who are dealing with loved ones who perhaps are towards the end of their life.
Candace Dellacona: So welcome Ashwini. Thank you so much for having me here, Candice. My pleasure. So for our listeners. I want everyone to know how qualified you are. So you are a Tufts trained physician, you did your residency at Yale, your fellowship at Yale, you are a hostess and palliative care physician, you have instructed at Yale and Mass General and Harvard, so I would say in a nutshell, you are qualified to talk about this topic.
Candace Dellacona: So we are thrilled to have you.
Dr. Ashwini Bapat: I'm very excited to be here and I'm excited to have this important conversation, I think. Absolutely.
Candace Dellacona: So, You know, why don't you tell us, just from the start, as someone who has gone through such rigorous training as a physician, all of our listeners know the intense coursework and the hours that you have to put in to become a physician here in the United States.
Candace Dellacona: What made you take sort of a different path than a hospitalist or, or something similar?
Dr. Ashwini Bapat: Sure. So I did. I worked as a primary care doctor for a little bit. I worked as a palliative care physician for a pretty long time. I've worked in hospice. And the thing is that as a palliative care doc, I've had thousands, thousands of conversations with other people's parents.
Dr. Ashwini Bapat: Other people's families about how they want to be taken care of now as they live with, let's say, dementia or as they live with cancer. And the thing is that my own dad was diagnosed with dementia a couple years ago. And around that time, I realized that there's, having seen so many people live with dementia, I knew that there was this window of time, a window of opportunity.
Dr. Ashwini Bapat: Um, and I have a conversation with him about what he wants now, how he wants to live now. And when I started looking at resources in terms of how I can have that conversation with him, like what do we need to talk about? I realized that there just wasn't a ton around. How do you actually live with an illness like dementia?
Dr. Ashwini Bapat: And there was a lot around end of life wishes and wishes, um, around dying and death and things like that. But there wasn't a ton around how do you actually live with an illness? And so that was kind of the moment that sparked this idea to say, are there ways to create resources to help? Help myself and help other people have these conversations with their loved ones with their parents around how they want to live With that illness because I knew like when it comes to dementia with my dad, he's gonna be living with dementia for years A lot of people that get diagnosed with cancer, depending on the type of cancer, they're going to live with it for years because there are such amazing treatments now.
Dr. Ashwini Bapat: And I really wanted to create a resource, kind of go to place, where people can have these conversations with their parents around how they want to live with the illness, where do they want to live. What type of medical treatment they want, what financial plans they may have in place. Uh, so that was really the turning point for me where I said, you know what, I want to use my training and my experience, but I want to use it in a different way.
Candace Dellacona: I mean, it's remarkable what you've created and, and really sort of taking a holistic look at Sort of the people that are dealing with illness and the families that love those people and focusing on the living rather than just the dying, right, obviously dying is a part of it, but I love what you just said about focusing on living in the midst of it.
Candace Dellacona: So, you know, just to educate our viewers and myself, can you just give us A quick sort of description of the difference between palliative care and hospice.
Dr. Ashwini Bapat: Okay, absolutely. So, first of all, there is so much confusion around what palliative care is, what hospice is, and often it just gets lumped together.
Dr. Ashwini Bapat: So, palliative care is an extra layer of support for anyone going through any sort of stressful illness. So, anything like dementia, cancer, ALS, heart failure. And the idea behind it is that you, when you have a palliative care member be part of your care team, your care team goes from being, let's say the A team to the A plus team.
Dr. Ashwini Bapat: That's how I like to think of it. And it's really about providing holistic care. And I feel like that's where palliative care really shines because we think of the
person in front of us that they are so much more. than just their illness, or just their diagnosis, or just their treatments. We recognize that that illness impacts their entire life.
Dr. Ashwini Bapat: It impacts how they interact with their kids, how they interact with their spouse, and how they see themselves. And so that's a huge part of what we do in palliative care. And importantly, and I think this is a distinct factor for palliative care, is that it can be provided at any point in someone's life.
Dr. Ashwini Bapat: So you can get it at any age, you can get it at any stage of illness. So you can ideally, I will say ideally, get it early in the course of dementia or early in the course of cancer, early in the course of ALS. Or you can have it later as well. And it's also available regardless of your prognosis. So what that means is Regardless of whether you're expected to be cured of your illness, or if your illness is considered more of a chronic progressive illness, you can get it in both situations.
Dr. Ashwini Bapat: Right. Uh, so that's how I would think of palliative care. And then hospice, hospice care is really kind of holistic care specifically at the end of life. And so ideally, it's actually in the last months of life. Not in the last like hours of life, but hopefully in the last months of life so that you can actually benefit from the services that hospice provides.
Candace Dellacona: That totally makes sense. And, you know, I've never heard it explained that way. I do know from my clients and many of our listeners that there is sort of a, a reawakening in terms of what palliative care is. And I think that doctors such as yourself. Sort of championing that sort of care to start much earlier, which is really a beautiful thing, right?
Candace Dellacona: It's talking about to your point and and the goal of your company, which is at Bione to Really harness how to live with disease So, you know when when one is diagnosed with an illness mom dad loved one What would you say Shwani is the best way for a family member to start a conversation with a loved one about?
Candace Dellacona: Those palliative care issues, whether it's bringing care in or talking about what they see as their future.
Dr. Ashwini Bapat: I think the first thing before you even sit down to have a conversation with your parent or with your in law, I would actually sit down with yourself. And I would have you think about what are you hoping to get out of this conversation?
Dr. Ashwini Bapat: Right. Are there questions that you need answered? Do you actually want to be clued in a little bit more in terms of what's going on with your parents health? So I would get super clear about what you're hoping to get out of it and what questions
you would ideally like answered. And then, I would also say that prepare yourself because it is an emotional conversation.
Dr. Ashwini Bapat: It is a sensitive conversation, so you don't want to go into it cold. Then the second thing I would do is I would actually, I would not ambush your parents. This is, a lot of people do this, um. Great advice. Thanksgiving dinner while your mom is carving the turkey. That is not the place to have this conversation.
Dr. Ashwini Bapat: So do not ambush your parents. Give them a heads up. Like, call them on the phone or on whatsapp and be like, Hey, I've really been thinking about you. I, I was hoping we could just chat about what you're hoping for in the coming years. You know, it can be vague or it can be super specific. You can be like, you know, I'd love to hear what the doctors have told you about.
Dr. Ashwini Bapat: Blah, blah, blah. Like, give them a heads up. Let them also prepare themselves. And I would also say, you know, you can have fun with it in the sense of, it doesn't have to be a doom and gloom conversation. You can have this conversation over coffee. You can go for a walk and have this conversation. You can have ice cream afterwards, like maybe you pair it with something you both of you enjoy.
Candace Dellacona: Yeah.
Dr. Ashwini Bapat: Uh, but I think that's where I would start. I would start with it being a welcoming, warm conversation. That way your parents have a heads up. They're, they're like open to at least having the conversation. And you're ready for the conversation as well. And I think the third thing, if I can add a third thing, is a lot of people, they go into these conversations with an agenda.
Dr. Ashwini Bapat: They'll be like, you know what, I need to know where my mom is gonna live because she's getting weaker, she's having trouble going up the stairs. I know that she needs to move into a retirement community or she needs to move into an ALOF assisted living facility. And I would say that that first conversation, it's really more about listening.
Dr. Ashwini Bapat: And so I would actually put your agenda aside and really listen to how your parents are thinking about this. Because the way I see that first conversation, I see it as having it be successful enough that they're open to a second conversation down the road. That's my goal. Yeah.
Candace Dellacona: I mean, that's really a great point.
Candace Dellacona: And I, and, and, and with that, I think the setting aside of the agenda for many of us in the sandwich generation, uh, it's difficult, right? Because we're trying to advocate for our parent, um, but yet not overstep. And so, you know, providing that advice of not having an agenda, going in with an open mind, letting them lead the conversation is really amazing.
Candace Dellacona: What do you do when? The first conversation has happened and you're concerned about, uh, them either being in denial because they're not accepting help or treatment, or they're perhaps not communicating. How does your firm and your approach come in to help families sort of deal with these hurdles, whether it's communication or otherwise, within a family structure?
Dr. Ashwini Bapat: Yeah. So when I think of denial, I don't always see it as a bad thing. I think a lot of people see it as like this terrible thing. I see denial all the time. And denial can be actually very protective in many ways. So for example, When someone gets a new diagnosis, or they just fell in their home and they were just in the hospital, denial can potentially give them the space to kind of unconsciously process this new diagnosis, or the fact that they ended up in a situation where they fell at home, and then they had somehow, someone called 911, and they ended up in the hospital.
Dr. Ashwini Bapat: So, denial isn't always the worst coping mechanism. I think the place where denial does not work very well is when it kind of blinds you and prevents you from going there because you are so incredibly scared to see what's there. Sure. And so in those situations, I really think of it as, I sometimes even use this image with the caregivers I work with or with their parents.
Dr. Ashwini Bapat: And I say, you know, sometimes it's really scary to open a door and look at all the things that could happen in the future. But what we could do is we could take a look, we can pick out one or two things, start making a plan for it, or start talking about it. Or maybe we start talking about why it's so darn hard to talk about it.
Dr. Ashwini Bapat: And then we can close that drawer again. And we don't have to look at it for a little bit. And then maybe at a later time, we open that drawer again and take a look and go back to, huh, why is it so hard for me to think about what would happen if I were to fall again?
Candace Dellacona: That's a great analogy.
Dr. Ashwini Bapat: And so I find like if you approach it, I think in a gen, from a place of compassion, I think that usually goes better than, so I just think about that example of a fall, you know.
Dr. Ashwini Bapat: When mom falls and she ends up in the hospital, and as a daughter, I would be convinced, I'm like, you know, she can't stay at home anymore. What if this happens again? Like, she definitely needs, she needs like, companion, she needs 24 7 care, or she needs to go into a supervised, like, residential setting. If I lead with that, My mom's gonna be like, many moms will be like, you know what, it was just one fall.
Dr. Ashwini Bapat: I'm totally okay. You're making a big deal out of nothing. Yeah, and then that's where the conversation stops. But if I took a different approach and I was like, mom, you know what? I am so glad that you're okay, and everything turned out okay. I love you, and I really worry about you. Do you think we can brainstorm ways so that We can prevent a fall in the future and then maybe see what she says,
Candace Dellacona: you know, I don't know.
Candace Dellacona: You're bringing in the loved one as part of, you know, which obviously it's, it's common sense, right? When you lay it out. But I think as adult children, you know, we're hearing from doctors that this is, should be, you know, should be done. And everything that's going on with our peers, we think it should be done.
Candace Dellacona: It should be common sense to bring the person into the conversation, but sadly it's not, I guess.
Dr. Ashwini Bapat: No, and I get it, like, when my, uh, dad got diagnosed with dementia, I, I knew exactly what the next steps were. I made a list, I was like, this is what we're doing, and I was like, you gotta see this person and this, and then we gotta talk about this, and like, what do you think about this?
Dr. Ashwini Bapat: And when I went through my list, I was like, Oh no, I'm losing my dad right here. He's not following any of this. And then I just cut back and I was like, dad, like, how are you doing with all of this? And he goes, you know what? My grandma had dementia too. And he's like, I've seen it and I think I know how this is going to go.
Dr. Ashwini Bapat: And I'm okay with it. And I'm like, you're okay with that. I'm not okay with it, you know? Um, but that was. That was really a different response than I think the response I was having. But I needed to kind of rein myself in to even hear him.
Candace Dellacona: So that's amazing. And you know, you just sort of underscored a point that you made sort of at the top of the episode, which is the timing.
Candace Dellacona: Right, so your dad was able to express to you, early in his diagnosis, that he was actually okay with it, that this is something that he had witnessed, and he understood the enormity of it, and as a daughter, I can imagine it was probably so
comforting to hear that. He got it, and he knew what was ahead. As sad, I'm sure, as the journey is, we all have people in our lives with memory impairment, and it is a heartbreak every single time.
Candace Dellacona: So, the timing of bringing the loved one into the conversation as early as possible seems really, really important.
Dr. Ashwini Bapat: Incredibly important, incredibly important because you know what, when I sat down to have some of these conversations with my dad and with my parents about how he wanted to live with dementia, how he wanted to be cared for, what he thought about like having in home aid come in sometime in the future or a nursing home, things like that.
Dr. Ashwini Bapat: I wanted him to have a say in it while he was still able to take part in that conversation because it is a complicated conversation. And so that was incredibly important to me and to the state, and I will also say that there were certain topics that we could talk about. And then there were other topics like around medical care preferences and end of life preferences that he did not feel comfortable sharing with me.
Dr. Ashwini Bapat: He, at one point, he was like, I just can't talk to you about this because you're my daughter and I don't feel like I can be honest with you. And so that's when I actually pulled in one of my colleagues, she's also a caregiver coach and I'm like, you know what, they're open to talking with a third party because they want to feel comfortable in sharing how they truly and honestly feel.
Dr. Ashwini Bapat: Would you be open to talking with them? And she did, and thank God they had that conversation about his preferences when it came to medical treatments, his preferences around end of life care. And at the end of that coaching session, she actually shared like a document of his wishes. And when I read those wishes, I teared up because I realized I wasn't ready to hear what he truly wanted to say.
Dr. Ashwini Bapat: Because I was in go, go, go mode. I know exactly how to like, how this is going to unfold. I know exactly what to prepare for, but I was really shocked to hear some of his responses and to this day, I'm so grateful that they had that conversation and that he had, he and my parents had this comfortable space where he could share honestly, without his daughter, like maybe her face twitching in a weird way or looking sad or, Whatever.
Dr. Ashwini Bapat: And I'm grateful for that because, you know, the dementia has changed and it has progressed and at the end of the day, we have this document. It's written. I know what he wants. It's in his own words. Um, and so in the future, if my parents and my brother and I have to make any decisions, we can come back to his own words and what he wanted.
Candace Dellacona: So I mean, it's so remarkable what you just described, right? Because you are the trained physician that does this for a living. You have the medical training, you have the sociological training, the psychological training. You've done it. Hundreds, if not thousands of times, and what you realized is as a daughter, you had to step away.
Candace Dellacona: And I think that's so important for our listeners to hear where we have a Schwinney. She is the expert guys. And even she had to step away. And so bringing in a third party can sometimes be such a gracious. Offering to your loved ones so that they can really be honest, right, about those topics that even your, you know, Yale trained palliative care doctor may not be ready to hear.
Candace Dellacona: So it's such a universal issue when, you know, we want to be the advocate for our parents, we're now adults, they've raised us to, you know, have independence and agency. But they're still our parents, or they're still our, you know, beloved uncle. And sometimes it's hard to separate.
Dr. Ashwini Bapat: Yeah. And I think that's 100 percent true.
Dr. Ashwini Bapat: And I just think about all the things he wouldn't have shared with me that he literally couldn't share with me when it was one on one. That he shared with my friend, a colleague, but that he felt comfortable sharing.
Candace Dellacona: And so bringing in that neutral third party can really sometimes open up the discussion and make sure that you're honoring the choices of your loved one to live, as you point out, as opposed to die, but to live with the illness in the way that they want to live.
Candace Dellacona: And you, you also said something else, Ashwini, that sort of overlaps a bit of my area, and that comes to the documentation, right? So as an estate planning attorney, As an elder care practitioner, those health care documents are incredibly important, and thankfully, most states have done a pretty good job at creating documents that can capture and marshal Thank you.
Candace Dellacona: One's wishes about end of life care in New York. We have a document called health care proxy and The proxy appoints a person so, you know for our listeners the proxy that you appoint Should be someone that you've had a conversation with Perhaps with someone like Ashwini and Ashwini's team To help your loved ones figure out the type of care that you want so that when they can't speak for themselves That person, that proxy can advocate in the healthcare setting.
Candace Dellacona: We also have a living will, which I think is more showing to what your point was and the most form in New York. And so those documents really are more illustrative where they go into greater detail about the type of care that you want. So
thank you so much for, for bringing that up, that it's a conversation and it also can be documented so that no matter what, everyone is quite clear.
Dr. Ashwini Bapat: Yeah, and I think, like, I think it's really hard sometimes to look at, let's say, a MOLST form, which kind of looks like a menu of options, and it's really hard to look at that outside of the context of your parents health and a larger conversation. So I always suggest if you're looking at the MOLST form and you're so confused about which one is the better option for my parents, I think you have to bring in kind of the medical team and have a larger conversation around what are, what's important to your parents now.
Dr. Ashwini Bapat: You know, that's, that's, I think, is that New York specific is 20? No. So, um, yeah, each state has a unique and then some states have something called a post form or a post form. So each state has a slightly different version. But the idea is very much the same. It's literally a prescription. It's a medical order.
Dr. Ashwini Bapat: So it's a prescription that says the types of treatments your parent wants or doesn't want. And it's signed off by a physician or a medical provider. And so it's literally a prescription.
Candace Dellacona: Wow. I didn't realize that. I mean, I will say that there are some states that do such a great job. I recently, recently reviewed the state of Vermont's medical directive, and it is.
Candace Dellacona: Wildly comprehensive and really beautifully done. They did a great job in the state of Vermont at sort of covering the gamut of what one would want. But so, you know, getting back to the neutral third party and how Apione could come in and help the family. How does your team work with the treatment team?
Candace Dellacona: Like, so a client or a patient has, let's say, end stage cancer or, or cancer that's perhaps not curative, but chronic. And they have a team at Sloan Kettering, and they have a primary care doctor, then you guys are over here. Can you explain sort of the interplay and how that would work? Absolutely.
Dr. Ashwini Bapat: So, in those cases, we'll either work directly with, um, the family caregiver, so it may be their children that are reaching out to us, or, um, or maybe that person themselves, like the person living with cancer that's reaching out to us.
Dr. Ashwini Bapat: And usually they reach out to us because they want to start conversations, let's say it's the family caregiver, they want to start conversations with their parent around what the parent would want now, now that our living answer, what's important to them now, what's important to prioritize now, and they may be having a hard time.
Dr. Ashwini Bapat: Having this conversation with their parents. So that's where they'll usually reach out to us. Right. And we'll either, and it kind of depends, we'll either support them in having these conversations with their parent. Or we'll bring the parent on, on the Zoom call and kind of mediate that conversation. Or sometimes, similar to me, they'll be like, you know what, can you just talk to my parents?
Dr. Ashwini Bapat: And then you, they can share what they need to share. And then the, the document that we call it a Caregiver Action Plan, and in that Caregiver Action Plan, we outlined the values that are important to their parent, what their preferences are, what the simple things like what brings them joy now, what are things they want to keep doing now.
Dr. Ashwini Bapat: That way they can share it with their kids and that in the future, if needed, their kids can look at that document and be like. Hmm, would my dad have wanted this treatment? I don't know. Let me look at what it says. And what that document says are, these are the things my dad enjoys doing. He likes going for walks.
Dr. Ashwini Bapat: He likes gardening. Is this treatment going to get him closer to keeping doing that? And if it's not, is that the best treatment for him? And if it's not, but that's the one treatment, right? Like, then it's like, okay, how can we keep incorporating the things he loves? Regardless of where his life takes him.
Dr. Ashwini Bapat: So it's kind of the
Candace Dellacona: touchstone, would you say, of the treatment? Right? So you can always go back and reference it and constantly reorient and maybe even like update the form with your parent if they still have the capacity to do it.
Dr. Ashwini Bapat: Absolutely. Because their wishes are going to change over time. What they want when they're 50 years old is going to be totally different than what they want when they're in their 80s, right?
Dr. Ashwini Bapat: And so, and the whole idea behind that document is it is in your parents words and you can bring that to the medical team. So, I know you were asking how do we coordinate that. So, oftentimes with the permission of the family caregiver or the person living with the illness themselves, we'll reach out to their primary care doctor or their cancer doctor and we'll just get on the phone and be like, Hey, we saw this person.
Dr. Ashwini Bapat: We wanted to make sure you were aware of what their wishes are. This is what their wishes are, this is what's really important to them, as you consider this other treatment. We'll send them the caregiver action plan so that they have it. And often times that caregiver action plan, people literally will print it out and bring it to their next
doctor's appointment to be like, I know we're making this decision about whether I should take treatment A or treatment B, but this is what's really important to my dad, like, which one of these treatments do you think is going to get us closer to it?
Dr. Ashwini Bapat: Or are there other options that could bring us closer to it or do we need to try out the treatment and then reassess how he's doing and how he's feeling? So, you
Candace Dellacona: know, just in, yeah, sorry, in the context of treatment, I mean, I think what a great way for a family to be able to communicate to the physician, right?
Candace Dellacona: Because, I mean, it's hard to know the right questions. To ask, I'm sure the doctors have all the answers and they can say, well, yeah, that's not going to really work well if your dad, you know, wants to do X, Y, or Z or has a family wedding. In France and you need to go. We have to make sure that that doesn't start then.
Candace Dellacona: So really remarkable way to approach it.
Dr. Ashwini Bapat: Yeah, I just think about this family caregiver I worked with recently and they were thinking of going on a clinical trial. One of the things, this clinical trial was going to be in pretty intensive for a solid year. And they were going to go to the big academic center about once every two weeks, and that big academic center is about a two hour drive from where they live.
Dr. Ashwini Bapat: Now, what was really important to this person was that they love spending six months outside the U. S. in Europe, because that's where they grew up. They spend winter outside the U. S., and they spend summers in the U. S., and they have family outside the U. S., so that was really important. When we looked at what that clinical trial entailed, if they were to enroll in it, they wouldn't be able to leave the US because they would need to be within a two hour radius of that academic center.
Dr. Ashwini Bapat: So even though the treatment itself really didn't have significant side effects, it was all the appointments, the visits, the lab draws that were going to tie, tie this person to a two hour radius of that academic center. And this summer they wouldn't be able to be in Europe the way they usually would spend it.
Dr. Ashwini Bapat: And so using what was important to him to figure out is this clinical trial, does it make sense for you, even though technically the treatment, there weren't significant side effects to it.
Candace Dellacona: I mean, you know, that, that story and anecdote in and of itself sums up exactly why it's so important to have these really meaningful conversations.
Candace Dellacona: Because the clinical answer, the medical answer from a doctor may not be the right answer for the individual. And, you know, in terms of caring for your loved one and, and, and making sure that they have their needs met as sandwich generation listeners, where we're sort of the ones hopefully advocating and making sure that all of our loved one's needs are met.
Candace Dellacona: What is your suggestion for those sandwich generation members? to make sure that they're okay.
Dr. Ashwini Bapat: Yeah, I would definitely have two suggestions. And I think it's going to resonate with a lot of people. I would say have the courage to have the talk. Yeah. It's never too late. Even if, let's say, your parent can't communicate, this is where pulling in a caregiver coach to help figure out the framework of values important to your parent.
Dr. Ashwini Bapat: It's going to just simplify your life. It's going to help you have fewer regrets when you're trying to decide, does mom stay at home or does she go into an ALF? Like, you can use that framework to make any sort of decision. And if your parent is able to take part in that conversation, it can really help you clarify your own role and the responsibilities they are kind of hoping you will take on.
Dr. Ashwini Bapat: And you can negotiate those responsibilities. If you know what their expectations are for you, you can, like, negotiate. You can maneuver. Yeah. And so, like, for a lot of parents, when they think about getting older and where they're gonna live if they can't live at home by themselves, a lot of them will say, well, it's okay, I'm gonna move in with my daughter.
Dr. Ashwini Bapat: She lives just, like, ten minutes down the street. Well, daughter does not know that, she's a 10 year old, so wouldn't you want to know that? So you're okay for it too, and then you can figure out what role you have in all of this. So I would say that's definitely a piece of advice. And the second piece of advice is, caregiving is supposed to be a shared responsibility.
Dr. Ashwini Bapat: So it should not be on just one person. It should not. It's too much. It is too much for just one person. So, you know, sometimes you end up being the caregiver because you're the most organized one in the family. You're the most, quote, successful one. You have your stuff together, and that's why you end up being the carrier bear.
Dr. Ashwini Bapat: But, this is really a time to start asking for help, and I think we suck at it. I think we really do. We do. But this is the time to ask for help, because if you have siblings, they probably want to help. But maybe they feel like, oh, you've got everything, why even bother asking? Or maybe your friends want to help too, they just like, don't know how to, and they don't want to feel stupid.
Dr. Ashwini Bapat: They don't want to feel like, oh, I don't want to make a suggestion because, you know, it's a problem. Maybe she's not the right one. Right. Right. Yeah. Yeah. And I would say definitely like start, and it's incredibly hard, I would say share the load and start delegating and look, maybe they won't do it perfectly.
Dr. Ashwini Bapat: Maybe they won't let you know, put the medications out perfectly for your mom. But if they do it well enough that your mom takes it and Correct, get to go out for like a walk for 30 minutes, well then that's worth it.
Candace Dellacona: I mean, so that's a really great point too, right? It's not only about the asking, it's about the accepting of the help.
Candace Dellacona: Yes. And giving up the control little bit that it might not be done exactly the way that you would've done it. And so. You know, that leads me sort of to one of my almost last questions is what do you do with a family that prior to this diagnosis, prior to these issues, there are big issues that there are difficult intra family relationships, either parent to child, sibling.
Candace Dellacona: What is your best advice for those complicated family relationships when then also dealing with this?
Dr. Ashwini Bapat: Yeah, I would definitely say that when you have a complicated relationship with your parent or with your siblings, I will go back to it, having that talk with your parents early on is going to make a huge difference because later on down the road when you're trying to figure out if mom stays at home or if mom goes into the memory care unit.
Dr. Ashwini Bapat: It won't be what, like, what I think we should do for mom versus what my brother thinks we should do for mom, which will probably not be the same thing. It'll be, this is what mom would have wanted. How can we help her get that? So those early conversations help to ease some of that infighting and it helps you kind of get everyone at least on the same page of what mom would have wanted.
Dr. Ashwini Bapat: I would also say have fun. Pretty realistic expectations of yourself because and there's nothing like an illness brings out The stress and fractures of a family. Yeah. So if you were expecting, if you and your brother have never agreed on anything before and you constantly fight, you're probably going to fight over what is best for mom.
Dr. Ashwini Bapat: Unless you have that early conversation, you're probably going to fight over it. And so I would not expect those family fractures and fighting to miraculously get better. Under the stress of an illness
Candace Dellacona: and so, you know, just to because you won't do it yourself, but I will champion, you know your organization This is a perfect opportunity for the neutral third party to come in and and you know in some ways maybe act as a mediator so that both sides are heard and that everyone is refocusing on mom or dad or the loved one.
Candace Dellacona: So, you know, shout out to a Schwinney and, and I'm sure your unbelievable diplomacy skills that are required in some family circumstances. I mean, somebody said that to me recently that, you know, you're just never your best. Self when you're faced with losing a loved one, or you're, you know, in that position on your own, having received a troubling diagnosis.
Candace Dellacona: But the last question I'm going to ask for you is when he is that, you know, you, you've had this, you know, amazing career that you've created for yourself. You've worn the hat of the palliative care physician. You've instructed physicians coming up. And, and hopefully filling the field of palliative care with much needed resources.
Candace Dellacona: And you've also been the daughter. So what is your best advice as the daughter or something that you wish you would have done differently now in retrospect?
Dr. Ashwini Bapat: I think I wish I had listened. So it's interesting because when my dad got his diagnosis, I went into action mode.
Candace Dellacona: Yeah,
Dr. Ashwini Bapat: I went into check boxes to-do lists.
Dr. Ashwini Bapat: I gotta reach out to this colleague and that colleague. I wish I had just been like much early on before . I went a little crazy. Um, I wish I had just asked my dad like, Hey, how are you doing? Yeah, and to be honest, I wish before he even had the formal diagnosis, I wish I had asked him. Do you want a formal workup?
Dr. Ashwini Bapat: Do you want to know what this could be?
Candace Dellacona: Yeah.
Dr. Ashwini Bapat: Um, I didn't. I wish I had because he has told me, like, in passing a couple times that he may not have gone for the formal diagnosis and everything. If my family hadn't kind of pushed it, and it's interesting because my other family member mentioned in passing as well that when the day he got that diagnosis, it was as something changed and all of a sudden, he felt like he couldn't do anything.
Dr. Ashwini Bapat: He went from being super independent in terms of like, going from our house to the park and going for a walk by himself to all of a sudden, he was like. I don't know if I can go for a walk by myself. Maybe you need to come with me. Right. Right. You know, so I wish. Yeah. I wish I had had that conversation much earlier.
Dr. Ashwini Bapat: Like, even before the diagnosis, if he wanted to know, like, did he actually want a word up? Because now in retrospect, I'm like, maybe he just did that because we kind of pushed it.
Candace Dellacona: So really the sort of moral of the story in all of this is really go back to your loved one. And be present with them and ask and not make assumptions.
Candace Dellacona: So, I mean, your cautionary tale and all of the great information that you provided is just really amazing for our listeners, for me. I'm just so grateful for your time today, Shwini, and for what you're doing. And hopefully changing the trajectory of aging and having those great conversations. So, I can't thank you enough.
Candace Dellacona: We're going to put all of your contact information. In the notes in the show, and so thank you for joining us, Ashwini.
Dr. Ashwini Bapat: No, thank you so much for having me, and honestly, if I can change the trajectory in a positive way for one other person and one other family, that to me is so worth it. So thank you so much for having me here and even taking part in this conversation.
Dr. Ashwini Bapat: Absolutely.
