Caregiving with Dignity, Part 3: Navigating Financial, Legal, and Emotional Challenges

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Transcript

dr--kendra-washington-bass_1_06-09-2025_184221: 0:06

greetings, and thank you for joining us today. Caregiving is one of the most profound and challenging responsibilities many of us will ever face. Whether you're caring for a parent, a spouse, or a loved one, the emotional and physical demands can feel. Overwhelming. But beyond the care itself, there are these complex decisions about finances and legal matters and long-term planning that often come with the territory. So today we're going to explore the financial, legal, and emotional aspects of caregiving. Our panelists will guide us through essential topics like protecting your loved one's assets, navigating long-term care options, and understanding legal tools that are at your disposal, such as trusts or power of attorney, and advice directives. We'll be discussing this U, these unique challenges faced by caregiving, particularly those balancing the emotional journey of caregiving with the practicalities of managing those finances and estate planning. Many of our panelists today have lived through these challenges personally, and they will share these experiences with us, shedding light on how they've navigated these difficult and often unexpected situations. This session is for those actively caring for someone, those planning for the future, and anyone seeking to better understand the complexities of caregiving from legal, financial, and emotional perspectives. We're honored to have a diverse group of alumni with us each bringing valuable insights into their journey personally and professionally. Moderating our discussion is James Riley, a 1994 alumnus, senior Director of Internal Engagement, diversity and Inclusion at the University of Notre Dame, and of course, a former board chair of the black alumni of Notre Dame, 2006 to 2009. He'll guide us through a conversation that will provide you with the practical tools, meaningful advice, and compassionate support as you navigate this important journey. At this time, I over to you. Thank you.

James: 2:19

Thanks classmate. Kendra, you could tell I'm pretty excited to be here. I'd like to extend our sincere thanks to the Notre Dame Alumni Association and the Initiative on Race and Resilience for sponsoring Caregiving with Dignity. Now let's meet our guests. Edward Augustine is a legal professional specializing in residential real estate transactions in New York City, focusing on cooperative apartments, condominiums, and estate planning. Known for his innovative solutions. Edward represents private clients, cooperative corporations and institutional lenders, and has built strong relationships within the industry. A proud Notre Dame alumnus. Edward is passionate about advocating for underrepresented communities. He provides guidance in estate planning and property transfers, ensuring survivorship rights for domestic partners. Edward holds a Juris doctorate from Rutgers University and a Master's in Liberal studies from New York University. Isha Holyfield is a concierge medical provider at Essen Healthcare, serving underserved communities in New York City. With 22 years in healthcare, she specializes in primary care, focusing on home-based patient management to prevent hospitalizations and educating patients on when to seek urgent care. She holds a pre-med and sociology degree from the University of Notre Dame, class of 2001 and a nursing degree from the University of Detroit Mercy and a master's degree from New York University where she became a board certified family nurse practitioner. My sister Rochelle Val Saint is a marketing project manager for the city of Sandy Springs, Georgia with a passion for storytelling. She helps college bound students and their families navigate the admissions process and works with black women entrepreneurs to craft authentic brand stories. A proud New Orleans native. Rochelle served for 15 years with the black alumni of Notre Dame, including roles as chairperson. She's a mother of two and a pet mom of Gumbo or Bo, and is currently working on her debut novel. Welcome everyone. Thank you James. Thank you. Yes. Let's dive into this wonderful conversation. So caregiving. It's often a journey that combines profound love with significant emotional and logistical challenges. To begin, could each of you share your personal experiences with caregiving, whether it's a role you've taken on yourself or a journey you've witnessed, and how it's shaped your understanding of the financial, legal and emotional responsibilities involved.

Rochelle: 5:18

my experiences really recently, I actually lost my mother in January of 2025. after a year and a half, battle with uterine cancer. At which times, partially it was, I'm one of three daughters of my mother and I'm the middle child, and we've each, we each had a, a, a chance in terms of caregiving for her, but she spent her last, few months living with myself and my children. so we were in the daily care of it and, making all the decisions we just talked about in terms of the, the care decisions, the final, life decisions for her. So my experience is that as I walk, I realized I'm five months into the grieving journey, so this is a gift for me to be doing. I'm grateful that, Kendra invited me and I feel like she's dragging me to something that I need to be doing and sharing my experience. So I'm just grateful to be here tonight.

James: 6:23

Thanks, Rochelle. Cia.

Zesha: 6:26

I am here as a healthcare professional mostly. I have not had to personally care and I have a lot. for the most part, majority of my family is still alive, you know, mine, grandparents, and a few aunts and uncles. So, I mean, I've witnessed it from my mom being the one with her siblings to help plan things, but I haven't had to do it personally.

James: 6:52

Edward?

Edward: 6:53

Yes. Well, a big shout out and thank you to the black alumni Notre Dame, and thank you so much for sponsoring this along with the University of Notre Dame and the num, the Notre Dame Alumni Association. yes. So I too am going into the 12th month of grieving for my mom who passed, and I think one of the biggest epiphanies and learning experiences for me was the industry of care management. And a role that can play in retaining private care management, and the partnership with social workers who are very familiar with elder care, with attorneys, with care managers, with counselors, with financial advisors, and with accountants. So it really just takes an incredible team to, you know, take someone on that, on that journey. years before also, I was involved in, my sibling, one of my sibling who, became disabled. So there was a lot of involvement I had to do in terms of making sure that she was receiving services, the right legal support, the right accounting, support, and partnering with those, those firms and those areas to make sure that she was safe in her home and happy.

James: 8:10

Thanks, Edward. Let's dive a a little bit deeper here. You know, we're all grieving at this point, and there are so many things to take care of in this process, regarding the finances and all of the assets. So for those of you who have experienced the loss of a loved one while also caring for them, navigating the financial and asset related decisions can be very difficult. So can you share how you balance these challenges while grieving and caring for your loved one in particular, what strategies or maybe even some resources did you find helpful when you were managing this whole process?

Rochelle: 8:51

Edward, you go first on that one.

Edward: 8:53

Sure. you know, it's, it's one day at a time. You can set up a whole plan and think you have it all together and, you know, I would always take out another legal, pad when an incident was happening and start with the date and the time as I was moving through and speaking to doctors and nurses and therapists. as much as lawyers like to be organized, that doesn't mean that it always can be organized and curve balls are thrown your way. so you've gotta take care of yourself. And, I found that, you know, long walks with my dog and with my partner in Central Park, making sure that you're meditating. You know, you have to be strong to get through these journeys, particularly when people are not able, family members are not able to make these decisions and communication is so important.

Rochelle: 9:48

Yeah. I'm, I'm gonna pick up on, especially when talking about finances, I can say that, I talked about the last year, year and a half of my mom's life where she actually lived in a senior living community that was independent care. But we had moved my mom out of her home, out of the home We had all lived in since living here in Atlanta area because I was, gifted to have my parents move here at the same time I moved here. So I had my nuclear family here with me, but after my mom had some strokes in 2016, 17, there were like two or three back to back. She just couldn't maintain the house anymore. She was living there alone. There were steps up and down for her to maintain daily living and she couldn't. And so we had to make the decision that she was gonna move out of the house, which meant selling the house because. Me nor my sisters were in the head space to become landlords. And I think that became the first discussion about money, finances. so we had, we made the decision to sell the house and moved her into a senior living community, in a one bedroom. And it was a hard transition for her who had been in a 2,500 square foot house and there was some anger and there was some frustration with us and how dare we, and we also had to make the decision to take the keys from her'cause she couldn't drive, but she was out there trying. So all of those things started impacting, finances because then, you start to realize after the strokes, my mom had vascular dementia and we started to see the decision making challenges in terms of finances. and there were hard moments that when. We took the keys from her. She called the police on my sister to say that my sister stole the car from her. So those were some of the, decisions that were really difficult and scarring actually. when we got down to the, the real final times of deciding like, are we talking nursing home? are we talking living with one of us? Because at points my mom had lived, lived with both my sisters and I was at the point, post-divorce. I was like, I'm gonna buy a house that's big enough to move my mom. But life did what it did. I got laid off. I did not move into the trajectory of buying a house. And so when we made the decision to move my mom in, I. There were real decisions that had to be made. I lived in a three bedroom with my two adult, young adult kids both in school, one in grad school, one in undergrad, and my daughter moved out and moved with my ex-husband to make room for my mom to be here. So there were decisions along the way with money, and we realized my mom didn't have enough to go into a nursing home. She brought in about$2,400 a month, and it costs about$4,500 a month for. Wow. a minimum of quality of care for someone to be in a nursing home. So those were all the money decisions we were making with the emotions of making all those transitions. And it was very difficult. Very difficult. So I think those are the places where you start to think about how do you navigate things? How do you navigate things with what the money they have? How do you make the decisions about what to do with, the money that came from the sale, sale of the house? Do you wanna become a landlord? There was some pressure to, well, don't give up the house, but that requires another thing to take care of. So we could go down the line with the money decisions, but they were difficult.

James: 13:47

Mm-hmm. Wow. Zha, would you have anything to add there?

Zesha: 13:52

well, for me it's mostly professional experience. In nursing school. We have to do care plans and we usually have to come up with three nursing diagnoses, which are different than medical diagnoses.'cause nursing diagnoses are more judgment based. Right. and they refer to actual or potential health problems. Right. So, I, I very frequently use caregiver role strain.'cause at such a young age it was evident that caregivers have just as much stress and strain, if not more than the patient. Mm-hmm. And so you can go from being perfectly healthy to heart attacks and strokes and you know, right there next to your loved one or go before your loved one. So I take it very seriously in my nursing career and try to recognize that and offer assistance. The other two diagnoses that I use pretty frequently. Judgements, were pain because at that point in time, pain was becoming the fifth vital sign and making sure that it was addressed and taken care of. And then the last one was knowledge deficit. Now, at that time, you know, the thought was you're in the hospital, you're lacking knowledge in something, whether it's a chronic condition and you're readmitted for that, or it's a first time thing.

Edward: 15:06

Mm-hmm. If I could just, add to the financial aspect of it, again, and this is for informational purposes and not legal advice, is that the first steps, as the question was, is the inventory of assets. And that's a big step. You know, where are the assets? Can they clearly be found? And then further as you look into that, it's what type of assets are they? And are these assets that can be controlled by estate planning and a will or a trust, or are they. Assets that have beneficiaries already that individuals have chosen that fall outside of that sort of control. So, you know, the basic part of estate planning is always you have to know what you have. You know how much you have and where you want it to go. And so that can require a lot. if, you know we're talking about parents here and if they were used to it being in control and there were certain aspects that were personal or they don't want to lose control of that. And even I think some of the smartest, what I see in work sometimes is that it has to do with that control, that there can be a married couple and both their names are on the deed to the house. And in estate planning, unfortunately we always kill the men off first, so the husband dies, and then the surviving spouse, spouse. Does not want to change the deed psychologically, why they want the name of their deceased spouse on that property. As much as you can meet with lawyers and accountants and start talking about, well, you know, this deed transfer is going to make things a bit easier. Goes also with trust as well too. That in creating certain trusts that might be financially beneficial, that requires taking a little, a big part of control off of an asset. And sometimes making your children, you know, in control of that with you being the beneficiary of it. And it has nothing to do with trust. Trust. It really has to do, I think a lot psychologically with, I've worked really hard, this is my place. You know, there's, you know, I have, I difficulty dealing with the changes that are happening and those conversations, you just have to approach them and repro them. And there's always, you know, but the concept of estate planning that's informational too, is that you just don't meet with your lawyer once to set up that plan. That is typically getting together every five years. Changes in tax law, changes in status, changes in what's going on with your life. I always call it checking in on the naughty and nice list to see how did I set this up? Is everyone still in that category and do I need to make some changes there? and always, again, checking in with your accountants, checking in with your financial planner and having that connection and setting up that team spreads a lot the stress out to other individuals and helps you cope and have a team that you can partner with for the best interest of your loved one.

Zesha: 18:08

And to, to talk about that, I think it's important to start these conversations early. When people are healthy, it can be difficult, but if you can do simple things with your loved one. With your siblings or whoever will be involved. Just asking simple questions like where would you like to be buried and what kind of service would you like to have and what colors and what songs and who you wanna speak and what would you like to wear? Just starting really basic for those people who don't feel like they have an estate. Right. And then, you know, the other part of that,'cause we do it in the ICU and we call it courageous conversations or Five Wishes. It's got a few names'cause we have to address, you know, whether or not you want CPR and life saving measures. But the other thing to consider, when it comes to a state is where do you want things? Who do you want to have? What? Whether it's the dishes or the Christmas tree, little things.'cause that'll get the conversation started. People usually do have feelings and emotions about that.

Rochelle: 19:10

I, I do wanna bring up this one thing that I think is critical to share, after coming out of this, our experience. I, I referenced that my mom had vascular dementia, and one of the things we dealt with was that my mom stopped paying her life insurance plan. And so she lost the benefits of that, and we had to get one for her later in life. I understand that there's now, based on your loved one's health, that they can backdate, life insurance policies because of an example like my mom having vascular dementia. But I, I just wanna give that as an example of some of the challenges of caregiving and awareness around, finances and what is known with your parents. Because I, I felt like with the journey there were so many unknowns, so many. loops thrown at us through the process, that I felt like it was a, a basket full of follies along with the emotional ups and downs.

Kendra: 20:20

Mm-hmm.

Zesha: 20:20

And to that point, it's, it's important to designate beneficiaries. I think sometimes people don't, or they don't change'em when things happen. And I had a job and the person in HR said, you know, with the pandemic and unexpected loss, they had a significant amount of people who lost someone calling to get the benefits. And HR had to say they never designated someone, or the people didn't have the paperwork. So it's important to, you know, have a folder or a box and let people know where it is that has that basic information about the deed to the house, you know, which policies you have, which memberships and organizations you belong to. Right. Because they also assist with funeral services. And whatnot. So, you know, the list can be big, but we can start really small with life insurance bank accounts and just have a general idea. I mean, Facebook years ago, put in that clause if you, something were to happen to you, who would you like to have access your account so that they could spread the news or monitor your page. But you know, with these new cells and facial lock and fingerprinting, I don't really know what the backup plan is for that. You don't have access to the phone. I don't quite know what we do in those situations.

Edward: 21:38

I could probably answer that a bit. I mean the, the bar associations are, putting out there informationally. you can go to, try going to your local bar association or state bar association for, what we call digital assets and passwords and access. And those sections are now drafted and incorporated into a power of attorney, which I like to call a living document. And it should also be in your will, which is the deceased document. And it very clearly then has an article that allows your executor approach Facebook or more important, you know, accounts, investment accounts with passwords, both when your loved one is living and they have deceased. So that is kind of a newer development to the bar that as with we are more dependent on this digital world that is there to assist lawyers with their clients.

James: 22:32

This is not your typical everyday conversation that we're having here. I think it's very important that we're having this conversation. So thanks again for this evening. Rochelle, you mentioned your sister earlier. So in this process, we, we all know that planning and, and the whole idea of long-term care can be pretty daunting for a family, especially as they're, is they grieving. when it comes to this area, the finances are very important as well. And there could be some pretty tumultuous conversations that you might have with siblings. So. Specifically Rochelle, how did you navigate with your two sisters?

Rochelle: 23:10

Yeah. in some ways we did it well, in other ways we did not. Mm-hmm. there were, I think two, two or three big conversations that I wanna share as a part of my experience. one was as my mother. My mother was in the hospital a lot. Those last three months of her life and our first, hospital stay. She was there about a month with, sepsis and her kidneys were failing. And at one point, The palliative team came to us and asked the question of did my mom have an advanced directive, which she didn't. but we had had individual, we had had conversations with her individually, and so two of my, I mean one of my sisters and my myself, were in agreement on, do not resuscitate in terms of my mom and my older sister who, had had the discussion, just had her own feelings about it. So she knew what my mom had said, but she didn't like the idea of it. So the palliative nurse, which was an amazing woman that I'm so grateful for to this day, came to us, had the conversation, with me because, my older sister lives out of town, so myself and my younger sister live here in the Atlanta area. My older sister lives out of town. And so she had the conversation with me because my mom was living with me and I was the person in the hospital every day. I went. I spent half the day in the hospital and then in the mornings and then the other half of the day I went to work. and she helped me to talk through how we would talk to my oldest sister and she helped us to bridge with what, what could have been a, a very difficult conversation and get my oldest sister on board with what my mom had talked to us about. But what she, my, she didn't feel good about. Now my mom made it through that hospital stay and then, she went to a rehab facility where she wasn't rehabbing much at all'cause she wasn't coming back much. And so the, she ended up back in the hospital and that second time. The conversation, a different hospital. the palliative team had to get involved again because I was going to the hospital every day with my mom. And again, she was not getting better and the doctor was coming in the room saying, oh, she's looking better. And my mom was not looking better. So I had the conversation with the doctor to say, I'm not sure what better means to you, but this is not my mom. And what my lived experience with her is, is, is disconnected from this notion of you saying she's getting better. That conversation, which was so critical, because I felt. I'm watching her decline, but this doctor's coming in every day saying she's getting better, but he's just looking at numbers on a chart to say that the worst condition she came in at, she somehow is baselining for his numbers. But I'm watching my mom decline. So having that conversation, had him bring the palliative team in again, my sister's still out of town. And when that pal that palliative nurse came in, she said to me, oh, she said to us, myself and my younger sister. that was when we had the discussion about whether we put my mom on hospice. And that was another difficult point for my oldest sister. so we had to have the three way, the three-way discussion again about getting to get her comfortable with the idea of putting my mom on hospice. I was fully good with it because I know what I was watching. and I was exhausted at that point, watching my mom decline in the, the medical team try to tell me something different. so that was another emotional hurdle. We got her on board, we decided to put my mom on hospice. so those were the two good times. But the last big conversation was this same, life insurance policy that I just talked to you guys about. my mom put my oldest sister as the beneficiary and there was a, a very, A disjointed conversation about how to use my mom's funds toward her end of life. And so that's where, you know, the rubber meets the road and the conversations have to happen and there is disagreement on how to move things. And that wasn't a conversation that went well and we're still working through healing with. So I wanted to give those three examples of navigating the complexity, the challenge, and the difficulty. And sometimes it's good and sometimes it's not. And I just don't wanna leave this conversation without saying and somebody that it's okay when it's good, but it's also okay when it's not because you do what you know is the right thing to do and all the rest will work out.

James: 28:39

Wow. Thanks for sharing that, Rochelle. Very, very deep and personal, stories. Sure. Like you said, you guys are working through all that still. and here we are in, in June of 20 20, 20 25. So thank you so much. Edward, we're gonna switch a little bit here to talking about assets and protecting our assets. As we know, many families worry about protecting these assets such as the family home when planning for long-term care. How can trusts, specifically trusts, be used to safeguard these assets? And what key legal considerations should families keep in mind, especially when they're discussing this with their attorneys?

Edward: 29:21

Right. So, I mean, those are big steps, right? So moving something from a deed that's in an individual's name into a trust. I alluded a little bit to that earlier. That, that requires a lot of losing control. Why? There can be, sometimes it can move in that direction with resources and attorneys who can draft that, that's great. If there's a mortgage on the property though, they are the big elephant in the room. The bank has to approve everything. People sometimes forget that, maybe as people are more seasoned, there's no mortgage, so they're not having to deal with that, approval. But that is always a part of the conversation. So that is is something important for that to understand. And I thought it was interesting what Rochelle said is that, of course our parents and our elderly folks are like, I'm not going anywhere. I, my parents used to say, we're gonna die in a ski accident together. It's gonna be real quick. You're not gonna have to worry about it. But, you know, my mother's like, I'm going out feet first. Well, you know, maybe you should have thought about it when like, there isn't a full bath on the first floor. And even though we have, you know, put chair lifts in and you like to be in your TV room, you like to be in your garden, you like to do all of this, that, that becomes definitely as I, I really like Z's term, the courageous conversations because the home then becomes a danger zone. Yes. Yeah. That was the te the most terrifying realization that I think is we can have all of these warm and fuzzy feelings and set up trusts and do all of these legal documents, but when Asisha knows when the nurses and social workers are coming in to do a home run through, you know, Rochelle, they ask you always in the hospital like, describe the house, how many stairs to the front steps? Where's the bathroom? What's going on? And you're like, you know, it is. So as much as I appreciate the question and there are resources and you can do that, and you can protect those assets, I think what the, some of the real, as part of this that we're sharing here is that things are changing every day. And again, it's about the safety, the best interest of your parent. And they, I think through the right conversations and the right support begin to realize that and begin to prayer, prepare themselves, begin to mourn that, and begin to try to take new direction, to understand that just also we were talking about relieving support services. My experience was you thought, alright, well my mom has a live-in now. Well that's great, but you know what happens when my mom's up at night and she wants to watch about six episodes of Blue Bloods and is the care manager gonna be able to stay up? That's an additional expense. You're already paying that hourly rate. That person has to take a break. So now you're bringing in. Someone at night to cover that shift. And the timing can move very quickly. It can move very slowly. and I still want to go back to that term of elder care care managers, not just caregivers, but care managers is an incredible field. and, I find that the support that's given through those individuals who live and breathe this and have those conversations is just, an amazing relief when the goal is the best interest and the comfort and the respect and the dignity. And that's what we're talking about here.

Rochelle: 32:50

Yeah. Yeah. I can't, I just, I just want to throw in the number of times when my mother was living on her own before she moved in with me and the number of falls she had in her one bedroom, senior living, apartment is what made me make the decision, last year. On Labor Day weekend, we're moving her now. because it was another hospital visit. The fire department had been there. I can't, countless times because I lived 45 minutes away. She lived in the area of town where she, we, she had always lived and I lived 45 minutes away. So it was a huge drive for me to get there. One too many falls, the number of, times the firemen had to come in or bust the door down to help'cause she's on the floor and can't get up. Yeah. The, and that's in a one bedroom flat.

Kendra: 33:44

Mm-hmm.

Rochelle: 33:45

that's made for seniors. So those, conversations are, are critical and they're not just, when you are in the 2,500 square foot house, it is, the downsize has happened, the decline is happening still, and you, you're navigating, okay, where, where are we now? What do we do?

James: 34:11

So Isha, as we experience this wonderful thing we call life here, we face some unexpected challenges, and especially in the area of caregiving. How can families prepare for unforeseen medical or financial situations, especially when we're caring for our loved one's needs that evolve quickly during the caregiving process? And how can we prepare for reaching a consensus among family members, as Rochelle was saying, to avoid unexpected differences in any philosophy with the decision making.

Zesha: 34:48

it's a right, it's a lot to consider. I mean, healthcare expenses, it's, that's why it's important to have health insurance and life insurance policies, know where they are, what they pertain to. The consensus. I mean, palliative care is an absolute great resource. you know, going to a Catholic Jesuit nursing school and working in Catholic hospitals for seven years, you know, they're really good about that. And, but let's say you don't have palliative care. I mean, to be fair, palliative care is for any diagnosis that's chronic long term. So high blood pressure, congestive heart failure, diabetes, COPD, AFib all should kind of elicit a little bit of palliative care. You're gonna be around for a little bit longer in theory, but you can start having those conversations early or even if you're just gonna go in for a knee or a hip replacement, right? Because those are times to have those conversations. As far as consensus, there's always someone in the family, well, I shouldn't say always, no. Very few things are always, or never, but usually there's someone in the family that's trusted, right? And you just try to use them to. You know, help with the triangulation, try to help, you know, have them help mediate.

James: 36:05

Great. All right. For Edward or Isha as well, are there any legal shifts or historical precedents that caregivers today should consider when making decisions about long-term care or guardianship or what we just talked about? Asset protection?

Edward: 36:24

Yeah, for sure. I mean, I think, marriage for same-sex individuals was a huge, wonderful thing where, you know, rights were now given to a, you know, a huge population and that was, you know, very important. But still, we still have a long way to go and, and in our preparation for this call, we were chatting about how even though marriage is recognized, that there can be hostile jurisdictions where a couple may have a second home in another state. And for Infor, in terms of information, it is important to make sure that living documents are in both of those states. So if you're commuting back and forth from Florida or New York City, it's probably a good thing to have your advanced healthcare documents set up by an attorney in Florida who's drafting a power of attorney and a healthcare proxy and a healthcare decisions declaration. That hospital legal will be more receptive to than emailing or sending a PDF of the one drafted in New York. So that, that is something that, definitely I would talk about in terms of changes that should be important. And I think not everyone is married, right? Some indi, I mean, people are individuals and a lot of my clients who are individuals, it's discussion with them about who do you love and trust? Who is going to help you, who are going to be in these positions? And informationally. I think also I. When you're meeting with a lawyer, we go in and think, no one really wants to talk about estate planning. No one wants to talk about death. And we go into the meeting perhaps unprepared. And this concept just informationally of, in layman's terms, is who's gonna take second chair of the first person that you want is unavailable? And what do we mean by unavailable? They've predeceased you, they've left the country. They don't wanna take that role anymore. So part of also protecting yourself or your family is having the plan B that's critical. And before you are also going to put people in those important roles where you, they have to take that on. You have to have that conversation with those individuals. And in my discussions with my clients, again, informationally, it's, did you have that discussion with so and so on Thanksgiving that you would like them to be the successor executive? Executor. Oh, yes, I did. And you know what? They're moving, they're gonna going to be, and, and they can't do it. I'm so glad. Or I had the discussion and yes, and, and I, I feel really good about my decision. So there's, there's that aspect to it. You know, James, also, I,

Zesha: 39:03

and to Edward's point about the, the legal documentation, like the do not resuscitate, do not intubate, D-N-R-D-N-I, Florida's is on a yellow piece of paper. I've learned now doing, you know, this version of home care, that New York State or New York City at least, is on a hot pink piece of paper. But it doesn't matter the color of paper, it, in most homes, it should be on the refrigerator or the back of the front door, someplace that's easily accessible. You know, I, I visit patients now and they have these forms, but it's not at home or it's at home, but the person who knows where it is doesn't wanna tell the other members of the home. So now I'm there, and I know it exists. Well, I'd like to scan it into the chart so that we can, because now I'm there as a healthcare professional and I can help bridge the gap with having these conversations. Sometimes siblings will say, oh, my big sister or little sister's gonna handle that. Or sometimes they say, oh, we haven't thought about that, and I don't know if we're ready to talk about that. And so then I just put it on my agenda.'cause I see these patients in a rotation about every three to four weeks that I just bring it up. Every three to four weeks have we thought about it. Good. And when they're, you know, like, I don't really know. I say, well right now the default is go to the hospital, get CPR. Mm-hmm. But if at any moment in time you know, something's gonna be different, that's when the form is the most helpful

Edward: 40:22

for me. I also think it's in, go ahead. Oh, go ahead. No, go ahead. No, go ahead. No, I just, just informa informationally. We've talked about also that in this day and age you should not be traveling without your advanced healthcare documents scanned and accessible on your phone. They all need to be PDFs. Great point. particularly if you're a single individual. This way it's accessible. And I wanna have the discussion with you, Isha, is that what, even if you have these documents being they're responsible, you're like, I can just press send. There's also the documents that the hospital, like you're saying, it, it recognizes, you just brought up the distinction, well, why is this, why is this not the pink form? the New York Power of Attorney used to be one page, both sides. Now it's four or five or six pages. Yes. If I'm sending that to another jurisdiction, they're gonna be like, what is this crazy thing for New York? So it's immediately establishing relationships. I always made sure I knew who the patient advocate was. I was speaking to records. I made sure that what was executed, they saw was prepared and. If it's being executed in the hospital, it has to be consistent or you're going to have a problem of course, with the documents that were executed in front of witnesses and notaries and that's fine. If things have changed, then the estate planning has to be updated. But trying to make that so easy, because I really liked what you said. If I'm calling at 12 o'clock and checking in on, you know, a family member, the nurses, you know, who are you? okay, well I should be on, there's this Edward Augustine and Zha, I want to go to you. It's the nurses are so busy, they want one contact. Yes, they want, they want information given to the family. But if you start giving them multiple people are calling, it is preventing them from giving the best care to your loved one and the, the other individuals they're responsible for. And that does not go over well.

Zesha: 42:19

We have those conversations when I was in the ICU all the time here, who do, who is the point of contact if the patient can tell us, we tell them. Who is the point of contact Here is the code. Now the code could be the pet's name. The last four of you know, the birth, the birth year. Like it'd be what you know, however the hospital designated that. But if someone called hi and they wanna know about so and so, what's the code? They didn't have the code, no answers. But of course if they had to code follow with their name, it would be quite a few times that that code would be given out. We can't keep coming to the, to the desk to answer the same questions on repeat. So I was tried to be pretty good about getting a first and a second, and I was okay with that as a nurse. Other nurses would be like, just one or I'm not gonna take the phone call. So that is something to consider. the other thing, there was something you just said also, Edward. Oh, I forget.

James: 43:15

Oh, I think I was gonna ask Azi if there were like a succession plan there, like a first, a second, a third or fourth. Like would, if people give you multiple names to contact

Zesha: 43:24

in the hospital. We were very strict about one at most. Two. I, I mean, I was also fortunate to work in what's called an open ICU. So we had 24 hour visitations. We didn't necessarily move the families out. during a code blue, someone on the team would stand next to the family member and kind of talk them through it as much as they could handle or as much as they wanted to be a part of. So that's a different experience than ICUs who have strict visiting hours and at this time you have to go. I, I never had that, so I always had to be prepared and ready. And I wanted to touch base with something that was said previously about, you know, having to take off from work. It's important to know that we do have. FMLA. Most people, most people are eligible for FMLA after working for a place for a year. And it's important to know that that's an option. so that you can protect your job, you can protect your insurance. Some, you know, people are blessed to work with managers and coworkers that will let them know right away and others not so much. So you wanna be mindful of that when the call outs start reaching close to policy so that you don't have to worry about, you know, that those repercussions. My parents are, I don't know, I won't say pro death, but I feel like when they turn 40, oh, every day at dinner we were talking about death and their wishes and, you know, bar and cremation, and my mom wanted to be cremated. My dad was like, how could you, you need to be buried next to me. Wow. I mean, they're 70, they're in their seventies now. I thought their estate planning was pretty locked solid, but they're actually doing something right now, I believe, through the va. but I would say maybe. 15 years ago. For a long time they did have first floor masters, but as they've continued to buy more homes or, or, or relocate, my dad will say, I'm gonna go first and I don't want my wife to have to move. I don't want your mom to have to move. So they built, bedrooms for my brother to be able to move his whole family in. So like bedrooms with Jack and Joe bathrooms, like just trying to set up, for, for my mom to be taken care of in his absence. And, you know, they, they were around to see what happened with their parents and their eldest sibling, well, the eldest siblings for my mom. So that I think helped with that. But, recently, with these classes that my parents are taking, they're still mom's still pro cremation. my dad's coming around to it.

Edward: 45:49

Isha, I wanted to talk how you brought up cremation and I think it's, that's a hot topic without going into all complicated legal, forms. for informational purposes, it should be a part of the suite of documents. It's that, it's called, cremation Funeral Memorial Affidavit one page. And the bar associations, I'm sure have these templates. I would not recommend, you know, for informationally going online. First of all, I think that there could be a breach of real personal data in doing that. I think that still for something so personal and private, the legal industry is still a good concept in terms of attorney-client privilege and meeting with someone who has to, you know, abide by that. But, cremation people get frantic and nervous about that. And you are not a spouse or an adult child, and you, you're talking about cremation funeral parlor directives get very nervous. And then they'll start saying, what's your relationship to the decedent? Are you sure? Can you show me the will on that? And the funeral directors are somewhat doing their job, but sometimes, and I know we're gonna talk about this, sometimes they're being biased and discriminatory, and to just have that scanned on one page. It can be in the will, it's going to be in the will in a paragraph, but they don't need to read all of the private things in a will, if that is executed properly, depending upon the jurisdiction. You have that ready if you're doing plans in advance, and particularly for cremation, it should be in there. There's also people who are, will say, certain religions do not permit this, and who needs that kind of feedback when the, the, your loved one was thought about this and made this decision and made sure that it was done in writing and, and done the right way so that it could be communicated. So I, I like how you brought that up as the hot topic, because that can be a conversation. And one quick thing, I think Rochelle and what we're all talking about is these are difficult, courageous conversations when you're, you're speaking to people, again, who are individuals or a single parent, or someone who's just single, who has a beloved dog or animal, and they're being like, kind of reluctant. And it's like, well, who's gonna take care of your level? You know, your, your beautiful poodle. All of a sudden it's like, well, wait a minute. Oh my God, I've gotta plan that. All of a sudden people are like, wanna talk about a pet trust? And, that sometimes can be the way into a co the courageous conversation where someone's in the hospital, who's gonna watch my cat? Who's gonna feed this? Who's gonna walk? You know, Lizzie, who's going to do that? That can sometimes be the inside line to the courageous conversations.

Zesha: 48:28

Yeah. And to touch on what you said, different states have different rules on who gets to speak. I think all 50 states, correct me if I'm wrong, Edward, the spouse is first, but when I used to live and work in Indiana, any first degree relative had the Right. So that was a parent, a spouse, a child, or a sibling

Edward: 48:49

or a grandparent sometimes. And that could be,

Zesha: 48:51

it wasn't grandparent a problem.

Edward: 48:53

Particular in some jurisdictions.

Zesha: 48:54

Yeah. Right. And, that, that's hard. Someone's coming in through the emergency room, who gets to make the decision first on scene? Exactly. Because so many different, people have the same right as the spouse.

Kendra: 49:07

Hmm.

Zesha: 49:08

So it's important to know what does your state say about Zap.

James: 49:11

Mm-hmm. Well, friends, we're almost to the end of our wonderful time here together. I wanted to touch on one additional topic here, something that's near and dear probably to all of our hearts, I'm sure. And that's the cultural aspects of what we're going through here when we're caring for loved ones. So these, these cultural norms, they can significantly influence how our families approach estate planning and caregiving. So are there any specific cultural factors that affect how people of color or the lgbtqia a plus community plan for long-term care estate planning and lifestyle matters? How can these considerations be addressed in this planning process?

Edward: 49:57

James, I'm so glad you brought that up. And Rochelle, I hear you inhaling, you're gonna take it from here, but this one I, I prepared for and, It is, this is where I think things can can compare to the medical industry is you wanna be comfortable with a professional advisor. And thank goodness at this point we can probably get to a city where there are multiple bar associations. If you want a practitioner who is an ally or LGBT or friendly, you can go onto that bar association and ask for, you know, the, their legal referral service. If you want a person of color to be your attorney, if you want a woman to be your doctor, your physician, your attorney, you have every right. As a private individual and, and particularly if we're talking about parents and there are cultural issues or not, we are, thank goodness in a society where there are multiple bar associations, Latino, Hispanic, LGBT women and they have referral service. And I think that is sometimes part of the battle is. You want someone who understands that extra bit of the fear, the concern, the experiences of not being respected, disrespected, and wanting that comfort. And fortunately there, there are those choices and I wanted to make sure that people understood that, that there are those resources now. Yeah.

Rochelle: 51:23

Yeah. And Edward, I was just gonna talk more on lifestyle. I, I think a great example in the hospital, my mother was not getting the nutrition she needed'cause she just wouldn't eat, which was the thing that sent us to the hospital the second time. She wasn't eating, she wasn't drinking and so she wasn't getting enough calories. And I think, I wanna give the example of how, culture and lifestyle matters. Like they were trying to give her thickened liquids, and, and you know, the hospital food and put thickened liquids in that. My mother would not eat any of that. She was not having any of it. But the nursing team, and the techs literally saved my mother's life with things like, okay, I'm gonna take this protein shake, put a little ice cream in it, ju it up in this way, in that way. And that is what got my mother, the calories she want, she needed, she needed literally life-saving calories. that helped us get her kidney function up from the 10% that it had gotten down to when she was in the hospital with sepsis. So the, the lifestyle and the cultural piece of we're gonna give this hospital food, we're gonna do. literally my mother is a sassy woman from New Orleans, so the way she talks to people is with some sauce in the same way that I do. And having that care team understand that Ms. Barbara only gonna do it like this, or you gotta do it like that, and her daughter is gonna be here every morning. So I was the person that the nurses understood. I'm bringing some brownies, but I expect y'all to be caring for my mama. I expect a report from the doctors. And even if your, your accent is thick because you are of, you know, of Indian descent, I wanna know everything and I'm recording it. Like those are the lifestyle things that matter to literally save my mother's life in that hospital. And, and the month that we spent there, where I was there every morning. To the point where they were telling each other, like the nurses coming on duty, people who may not know have known me was like, her daughter is going to be here, so be ready to give her whatever the report is. And I took that report and reported it out to my family every day, here's where we are. So I didn't have a lot of people calling the nurses station. They knew to see my face. but those lifestyle things matter. And from a culture standpoint, it might have been, you know, pot liquor, thickened to get my mama to, to eat something from the greens versus whatever the hospital food was coming in. So take those things in because hospitals don't always know how, how to give. The care that your culture would give. And so you have to think about who you are, what your history is and, and how we care to make sure that we're giving our loved ones what they need in these critical times.

James: 54:36

Mm-hmm.

Rochelle: 54:38

Would you

James: 54:38

say Ro z it up?

Rochelle: 54:39

Yeah.

James: 54:40

You gotta do something. You gotta do something, you

Zesha: 54:42

gotta something. I laugh because it's, it's funny. Pain patients can be particular, and my mom is a particular eater now, so it's not gonna be fun for her in the hospital. Thankfully she's a nurse, so as long as, you know, memory's intact, she knows what's coming. but it's interesting, you know, when it comes to feeding patients and you know, their cultural norms, and women tend to want smaller bites and men want bigger bites and men tend to want the food hot. Like all of that does matter and thickener does not taste great. So we do try to find other alternatives. Get the food in without having to resort to a tube.

Rochelle: 55:21

Yeah. And get to know your team. they're people, they are literal people. So I, I knew the woman who cleaned every day and the one the one day when I was late and she didn't see me and then she saw me the next day. She was like, I didn't see you. I was like,'cause I came here a little later. She was like, okay, mommy, I was looking for you. Like that, that those are people. And those people care for your loved ones. So make sure you are honoring them. Make sure you are treating them well. Make sure you are connecting with them doctors and all. Because yeah, doctors come in for that 10 minute window. 10 and then the, you mean five. Hey, I'm being gracious. That 10 with me, you 10 minutes.'cause I got a few questions. He used to call me the questioner. so I'm, I got him longer than he wanted to be there. But you gonna answer my questions? And then the rest of the time it is the, the, the CMAs, the CNAs, the techs, the nurses. And so get to know those people. And I could tell you bef by the time we left that hospital. We had everybody rooting for her. They were like, you leaving? We don't want you to leave. She had been there a month and it was like, yeah, we leaving. Is the goal not to be up in here? Mm-hmm.

Zesha: 56:37

and to your point, it's important to have your questions written down. patients tend to not, they'll ask nurses, they'll ask anybody who comes in the room a question, A doctor comes in, they have nothing to say. So the whiteboard, but I would write patients' questions down on the right whiteboard. Doctor comes in, ask the patient, do you have any question? Patient says, no, I run in Mr. Jones. We got three questions right here that we're supposed to ask the doctor when they come in. So it's important to make the questions visible. Or if someone's at the bedside having those questions ready to go.'cause that does facilitate, you know, the question, answer session a little bit better. And then to speak to culture, as I said earlier, try to get these conversations in whether they're over the dinner table, you're attending someone else's funeral, you're going in for a knee replacement, or the neighbor had a knee replacement, or your best girlfriend had a knee replacement. That's the time to be like, well what do you think about that? And how would you want that to be handled?'cause it's not directed at them and maybe they, they will, speak about it. Now my grandparents or older people typically know asking them those kind of questions means you're trying to kill'em off and you wanna know how much money they have. So it helps. It was helping that my mom's a nurse and both sides of my family respected that and I'm a nurse, so it makes it a little bit easier for us. And we're both cardiac ICU nurses, so no life and something we, we deal with on a daily basis. So that makes it a. Hmm.

James: 58:00

Speaking of writing things down, I've been writing a few things down here and I'm looking at one of my notes and it says, checking in on the naughty and nice list. Thank you, Edward, for that, that tidbit there. we have plenty of friends who will be listening to here to our, to our conversation tonight, who are just starting to navigate these difficult decisions that we're gonna be making. What would you give to them to ensure that they're taking the right steps for both their loved ones and for themselves?

Rochelle: 58:28

keep talking, start the conversations, the, the, courageous conversations and keep the conversation going. And then, so that's the conversations you're having with others. And then the other part is as you're on the journey, ooh, grace for yourself every day, gratitude, remind yourself, I know I had to do this for myself. I get to do this because when I was at, had my mom at home, and the caregiver was here for four hours a day, but the caregiver left and then it was me overnight. And those falls I talked about earlier. She started to have in my house in the room at 2:00 AM and it's me and my son trying to get her off the floor. Grace and gratitude and reminding myself that I get to do this for my mom because those earlier conversations I had with my sister, I was like, I am not the one to be the caregiver. My sister who had, sisters both had studied, had been, CNAs, both of them in their previous life. They were like, we got it. We got it. When it came down to it, neither of them could do it. So it was me in the trenches. So Grace, gratitude, I get to do this and I can say on this side of it. It was a gift. It was a hard gift. And at, at this point, I consider myself in what's called relief. I am grieving, but I also am relieved of the hard job of caregiving. So I'm navigating that right now and still giving myself grace on a regular basis. So grace, gratitude and giving yourself the understanding of it's a gift and you get to do it. Hmm.

James: 1:00:16

Thank you. Edward Isha?

Zesha: 1:00:19

hmm. From healthcare standpoint, walls are huge and it's important to prevent them. So that's things like removing the rugs, putting canes, walkers, rollators, grab barss for the bathrooms, doing all the things that you stand to up the home. you can add side rails to the bed, or you can get a hospital bed. So those are options. sometimes it's not so much that the patient's getting out of bed or confused, but when they are getting out bed, they don't have enough strength and so they need the side rail that attaches to give them.

James: 1:01:01

Edward, any final advice?

Edward: 1:01:04

assembling the team. I just wanna say it one more time. Now is the time to do it. It's never too early. Making sure if you want that extra nuance of calling a bar association that you are comfortable with calling a medical group establishment that you are comfortable with, making sure you have a relationship with your CPA, your financial advisor. Establish all of that. Now, don't be afraid of this term, elder law or elder care. And as we are living longer, people are getting disabled, younger and we're living longer, and things that we thought, oh my God, what's elder care? Elder law? You know, that's someone's 80 years old, 90 years old. That's not it. estate planning involves elder care and elder law. So I think when you are thinking about that, particularly for your parents, is make sure that a lawyer has that background and talk to her about that. That's, that's important. Care management. This industry, which is not new, which if you have the resources, my God, take advantage of it because a care manager, as opposed to the caregiver is a whole other different role. And Isha, you'll appreciate this. They just know they, they speak to the doctors. They know how to speak to the doctors respectfully. And I remembered this term. When I felt that my loved one was not ready to be discharged, you know, in the hospital, sorry to say this, but it's all, hurry up and then wait and calling at five o'clock to say, you know, okay, your loved one's ready to be discharged on a winter night when it's dark out. Moving them to a strange rehab facility. The term I used learned was that's an unsafe discharge that's unsafe, and it really is coming from your heart. It's no big trick. It's about, you know, thinking of those things, and bringing that into play. It cannot be done alone. there is a great book out there. I'm not, you know, getting any money from it, but it was reckon recommended to me by so many social workers called the 36 hour day. And, Rochelle's nodding her head, and we all get the concept right there. And wherever you want to get a resource, it's about, there is so much that has to happen and it's gonna take a team. But, you know, the other thing, Rochelle, I laugh, I laughed. You called your mother, you know, spicy. My mother was the same way. You've gotta have a sense of humor, but you have to recognize their personality and don't think that they're sitting there, that they're not observing everything and they know what should be correct and how should be approached. So, you know, make sure that that is, that's a part of the dignity, right? to understand the individual personality and how they communicate and what's best for their dignity and their safety and their health.

Zesha: 1:03:57

I think the hardest part is that. Well, you can do the best. And then there still can be a breakdown because people are people. and you never know who's going to contest someone's wishes or contest the will until you get to that path. And so it's important to allow room for that. Hopefully you don't, hopefully if you start early, you do things right, it goes well. But just knowing that the best laid plans sometimes, you know, don't go as anticipated.

James: 1:04:28

Well put Isha. And just on a personal note, just listening to the wonderful conversation that we had tonight, my sister and I lost our mother 30 years ago, just three years after I graduated from Notre Dame. And we still to this day, literally like last week, talk about what we should have done, during that process of, of her long-term care. We could have done this, we could have done that, just thinking it may have changed the outcome, but we're still having that conversation today. So I think it's important that. As we're going on in our lives right now, we should have that conversation with our siblings, with our family members, with this long-term care. So thank you once again to our wonderful panelists for sharing your personal stories, very personal stories, and invaluable advice. Your insights today have been both enlightening and empowering, offering practical guidance on how we can better navigate the complex responsibilities that come with this thing we call caregiving. To everyone joining us tonight, we hope you feel more equipped to handle the challenges of caregiving from managing finances and legal matters, to understanding the emotional and cultural complexities that can arise. The road may not always be easy, but remember that you're not alone. Whether it's through professional resources or community support, help is available. Whether you're a current caregiver planning for the future or supporting others, the important thing is to ensure that you're taking care of yourself as well. Self-care is essential in this process, and you deserve to show up for your loved ones and for yourself with dignity and compassion. Thank you for being part of this important conversation. We hope you have leave today with the new tools, a deeper understanding and a renewed sense of support as you continue this journey. Take care everyone, and remember, caregiving with dignity begins with caring for yourself.

Kendra: 1:06:28

On behalf of the Black alumni of Notre Dame, I wanna thank everyone for tuning in today.

dr--kendra-washington-bass--she-her-_1_03-26-2025_123744: 1:06:33

We can encourage you to continue following us along the way as we explore more aspects of caregiving. And we also gonna provide some further support and resources and upcoming sessions. Don't miss the next part of our Caregiving with Dignity series, where we will dive into some more tips, some more strategies. To help you along the way, and for more on Caregiving with Dignity, please visit us@thinknd.edu. So next time, see you soon, and go Irish.