Alison Stewart: This is All of It on WNYC. I'm Alison Stewart. When your parents die, you expect grief. You don't necessarily expect paperwork. Becky Robinson discovered that the hard way. She was in her early 30s when she lost her mother. Her father followed three years later. Even though they both had wills, Becky was thrown by decisions she had to make, both as their child and their executor. The experience led her to create a website called My Parents Are Dead. What now? Becky is here to share her experiences and take your calls. Hi, Becky.

Becky Robinson: Hi. Thanks for having me, Alison.

Alison Stewart: Becky had to deal with a lot of things after the fact. Also joining us now is someone who can help us figure out how to get conversations about the end of life started, either with our parents, our spouses, or maybe even just ourselves. Kate DeBartolo is the senior director of the Conversation Project. It's a nonprofit group that helps people communicate around end of life issues. She's here to help us find on ramps for the conversations. Kate, welcome.

Kate DeBartolo: Thank you very much.

Alison Stewart: Listeners, we want to hear from you. Do you have questions about this topic? Do you want to know how to choose a healthcare proxy? How to get a conversation about death started with a loved one? Give us a call at 212-433-9692. 212-433-WNYC. You can also text to us at these numbers. Have you had these conversations? What worked? What didn't? 212-433-9692. 212-433-WNYC. Becky, as I mentioned, both your parents had wills. That wasn't enough. What surprised you about their deaths?

Becky Robinson: There were so many assets that I didn't know I would have to be dealing with because we'd never really had a lot of conversations about death prior to their deaths. I knew that they wanted to be cremated, but that's about it. When it came time to actually go through their estate, I didn't know, for example, that they had owned a building where they both worked. It was an extra building that they owned that I didn't know that I would have to be dealing with, for example. I think it would be great if you can have a conversation with your kids about assets before you die. That's really important.

A lot of it I didn't know. They both had wills, but what do you do with a will? Where do you bring it? What do you do? I didn't know any of that. I would ask my friend's parents. I would ask my aunts and uncles, but either their parents had died so long ago or they had had lawyers do it all immediately that it wasn't immediately helpful. I ended up doing a lot of research, and the website grew out of that.

Alison Stewart: What do you think prevented you from having those conversations with them?

Becky Robinson: It's awkward to talk to your parents about their deaths. You don't want to think that they're going to die. It's a horrible feeling. I'm almost 37 now, and I still feel like I need parenting. I wish I had a parent around to guide me through these things. It's really awkward. It's not only awkward to talk about death, but it's really awkward to talk about money. You don't want to get out there and sound like you're greedy and you can't wait for your parents to die so you can get their money or something like that. It's just really strange. We're not-- Death is taboo, but so is money. It's awkward to have both of those conversations, even though it's really helpful to know about that stuff in advance.

Alison Stewart: Kate, tell us what the Conversation Project does.

Kate DeBartolo: Yes. We're trying to help people talk about their wishes for care through the end of life. We know that we can't plan for everything, but talking about this really helps. We have a lot of free resources to help people talk about what their values are. We want these conversations to happen early, often before a crisis. We know that a crisis is a really hard time to learn, so we have no preference for the type of care somebody would want, but we know that it seems too soon until it's too late. For us, we're focused a little bit more on medical conversations. Not, what's the matter with you, but more what matters most to you and really thinking about how you want to live your life through the end of your life.

Alison Stewart: Kate, who should we be talking to? Should we be talking to aging parents? Should we be talking to siblings? Who should those conversations be with?

Kate DeBartolo: Everyone. Anybody over 18 should be having these conversations. You've got somebody moving out of the home, maybe going off to college, you're getting married, having a kid, divorced, turning a certain age. There are so many times to have these conversations, and that's one of our goals, is to normalize this, to not feel like you only do it once and just when somebody's old or sick.

Alison Stewart: What do you wish, Becky, that you had talked to your parents before they died. What were some of the questions you would have asked?

Becky Robinson: I would have asked what they wanted to share in their obituaries. I would have asked what's most important to them about their lives so I could make sure I share that with other people. I would have asked them the names of everybody they worked with, their lawyers, their accountants, all of that information, so I would have it in advance. More broadly, I wish we had just talked more about all of their life stories, because now I don't have a chance to ask. In terms of actual-- I would ask them, why did you make me executor? What do you expect me to do? Have a real concrete conversation about that.

I'm presuming it's because I'm the eldest daughter and I have big eldest daughter energy. That's probably why they did it. I would have liked to know more about that. It's an important role. It would have been great to have a conversation about why they chose me and what they want me to do.

Alison Stewart: Let's take a call. This is Charlotte. She is calling us from Jersey City. Hi, Charlotte, you're on the air.

Charlotte: Hi. I'll try and speed talk my way through this. My mother was in hospice care in Philadelphia very close to the end. Me and my three siblings realized nobody really asked her how she felt about dying. I was the next one going to Philadelphia. At her bedside, she's monosyllabic, and I said, "Mom, is there anything you want to tell me about?" We're near the end. I can't remember how I put it and stuff. She immediately started to talk rapidly about her husband, who was still living and all this stuff. There's a knock on the door, and the nurse opens the door and said, "Miss, Miss, there's a guy on the phone who says it's really important that you talk to him".

I go to the phone. I said, "Mom, I'll be right back," cursing whoever this was. I get to the phone, and it's my brother who says, I don't think you should talk to her about it. It'll upset her too much. I said, "I'm hanging up on you and going back." Then mom opened up and everything. Siblings, what are you going to do?

Alison Stewart: True siblings, what are you going to do? Thank you, Charlotte, for sharing that story. We want to hear from you, listeners. Do you have questions about this topic, this conversation you should have with, with your child, with your siblings? Do you want to know how to choose a healthcare proxy? How do you get conversations about death started with a loved one? Our phone number is 212-433-9692. 212-433-WNYC. I'm talking with Becky Robinson, the creator of the website My Parents Are Dead. What Now?, and Kate DeBartolo, senior director of the Conversation Project.

Kate, that was a really interesting call. There were several different conversations that were going on. There was the conversation between the siblings and the conversations between the child and the adult.

Kate DeBartolo: Yes. One thing that I'm thinking of right there, we often talk about the swooper or the seagull effect of one adult child who may be caring for a parent and the one who swoops in from out of town, dumps on the plan and swoops back out. In this case, it was a phone call. It might be a visit from someone. We try to have resources for caregivers and how to get on the same page. That's one reason why we feel like it's so helpful to talk. Becky, I feel like your parents did so many things right by having their wills, by identifying who the executor would be.

For us, we know it doesn't do much good if that's sitting in a filing cabinet or a safety deposit box and nobody's talked about it or you didn't tell the multiple siblings who was going to be in charge. That's one of the things that we really try to help normalize for people.

Alison Stewart: Becky, you learned the lessons a hard way, the difference between wills and trusts. Would you explain that to us and what are some of the other lessons you wish you had known a little bit about?

Becky Robinson: Sure. My parents had a living trust. They had a will as well. A living trust is, to simplify things, a way to skip probate court so you can handle things on your own. For example, one thing I didn't know is that when you are a trustee, when a trust comes your way, you are supposed to sign an acceptance of trust to say, "Hello, I am in charge of the trust now." I didn't know that. Nobody told me that. I was just doing things for months, assuming I was the trustee because the trust paperwork listed me as successor trustee. Then a lawyer was finally like, "Hey, have you signed one of these?" I did. It's fine. My sister didn't want to challenge me. We were the only beneficiaries. It's all good.

It was confusing. I didn't know about that. There were lots of things I didn't know about. For example, investments and mutual funds. My parents had some of those. I didn't know how to even approach that. I had a retirement account through work, but I would ignore emails about assigning a beneficiary and all of that stuff because it just seems like another thing you set up for work. Don't ignore those emails, by the way. Set up a beneficiary. I had to learn all about that and learn about medallion signature guarantees, which are like a notary stamp.

That's what you do when you have to deal with stocks and transfer stocks to a different name. There's all sorts of stuff that people don't tell you. That's why I started taking notes and putting all the information I could online so people would be able to find it.

Alison Stewart: This is really interesting some about beneficiaries. This is a text we got regarding death planning. "My husband died very recently and although I am executor of his will, I was not designated as beneficiary on many bank accounts, which I need. As a result, I'm being told that I will need to go to probate court, a process that might take a year."

Becky Robinson: Yes, on average, probate court typically takes between a year or two years for most people. Yes, you can assign beneficiaries on things like insurance, insurance policies or bank accounts or retirement accounts or sometimes funds. You can assign beneficiaries and that's a great way to do it because then that stuff doesn't have to go through probate court. It can go right to the person. A lot of people don't know that, so they don't assign a beneficiary and then it does have to go get probated in the courts.

Alison Stewart: We are talking about how to prepare from death, from getting your paperwork in order to figuring out how to make end of life health care decisions. I'm speaking with Becky Robison, the creator of the website My Parents Are Dead. What now? Also here is Kate DeBartolo, the senior director of the Conversation Project. We'll take more of your calls after a quick break. This is All of It.

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Alison Stewart: You're listening to All of It on WNYC. I'm Alison Stewart. We're talking about how to prepare for death. From getting your paperwork in order to figuring out how to make end of life healthcare decisions. I'm speaking with Becky Robison, the creator of the website My Parents are Dead. What now? Also here is Kate DeBartolo, the senior director of the Conversation Project. This is one for you, Kate. This text says, "My mother keeps saying if I get old and sick, just push me off a cliff. How do I approach this?" This falls in the category of, I don't want to talk about it. I'm not going to talk about it. We're not going to talk about it. What do you do if someone just doesn't want to have the conversation?

Kate DeBartolo: We've seen that. The flip side, if I ever get like that, I want the whole enchilada. Sometimes people have really strong opinions that really bubbles up to, are you concerned about receiving too much care or not enough care? That person sounds like they're worried about maybe receiving too much. I realize, our name is the Conversation Project, but we often joke it should be the Conversations Project, that this can be many little bite sized conversations. It doesn't have to be one big sit down one. Thinking about, "Hey mom, you keep saying push me off the cliff. It sounds to me like you're worried about X," or trying to ask yes, no questions.

Maybe she's not comfortable with a big formal conversation. "Does it sound right that you would want me to make decisions if I couldn't do that? Okay, if so, here's what I think you would want. Does that sound right? Yes. No." Framing it that way can be helpful. Using different current events or TV shows. "I was watching the news and I saw this," or, "Hear something with Jimmy Carter. I was listening to this radio program." Using those things as icebreakers. Then just realizing some people might prefer to do this by email. Some people might want to do it as a phone call. They might want a heads up that you want to really talk about it next week when we see each other.

I remember a woman who hosted Thanksgiving every year for her family and she held dessert hostage and said no pumpkin pie till you tell me how you want to die and made everybody go around the table and talk about it. That worked in her family dynamic. That would absolutely not work in other dynamics where people maybe want privacy or to be away from others or do it in a car trip so you don't have to look at each other. Really thinking about what would serve that person best.

Alison Stewart: Let's talk to Robin, who's calling in from Harlem. Hi, Robin. Thank you so much for calling All of It. You're on the air.

Robin: Thanks for taking my call. I'm really grateful for this super important topic. My parents are in their late 80s and they're mostly healthy, but they're obviously not going to live forever. My sister and I have had this conversation with them more than once. After we had the conversation the first time, I thought, "Okay, good, this is settled. We're fine." Then over time, things change. It's a dynamic situation. What we've learned is we have to revisit the conversation now and then. It's not every time we see each other, we all get morbid about, "Okay, you're going to die, what next?"

It's the situation that has to be-- It's a vivacious conversation about death. I will say, one of the things that helped us a lot was a book called Being Mortal by Atul Gawande. All four of us read it, and then that was the catalyst for the initial conversation, and it made it easier to continue the conversation over the last few years.

Alison Stewart: Thank you so much for the recommendation. We do appreciate it. Becky, one of the things that you wrote about is navigating the funeral industry. What do you wish you knew? What do you wish that funeral homes did differently, to be honest?

Becky Robinson: The first thing is that I wish I knew I had a bill of rights. The FTC has their funeral rule, which states, it gives consumers certain rights about-- It's horrible to think of yourself as a consumer when you're dealing with your dead parents. You don't want to think, "Oh, I'm buying something," but that's exactly what you're doing. Basically, the FTC funeral rule gives you the option to shop around. You don't have to buy an urn or a casket from that funeral home. You do not have to have your parents embalmed if you do not want them to be embalmed.

Now, an individual funeral home can require that, but you don't have to. You can shop around. I didn't know-- When my dad was dying in hospice, the hospice workers were really great, and they gave me a list of local funeral homes and their prices. I think being aware that it's something that you have to think about in terms of pricing and shopping around, that would have been helpful to know. Yes. I think knowing that the funeral rule is there to protect me and that I have options and that I don't have to do exactly what someone at the funeral home tells me to do.

Then I also wish that funeral homes would get a little bit more creative. Not everybody wants a certain death. It would be great if funeral homes could help out with that and doing a little bit more unusual ceremonies. We did outside of funeral home memorials for both my parents because I assumed that the funeral home wouldn't really help with that because I knew they wouldn't want something traditional.

Alison Stewart: All right, we've got two really good texts. It says, "It's important to consider these issues for ourselves as well. Two years ago, I had an unexpected seizure at 56 and needed brain surgery eight days later. Thank goodness I have a dear friend who is a hospice nurse. She showed up before surgery with all the forms. Power of attorney, polst, which specifies your preference for interventions, living will, et cetera. I had already had beneficiaries set up on all my accounts, but it was great to have this paperwork taken care of." That's a really good friend.

This one says, "As regards the end of life planning conversation, I'm an estate planning and administration paralegal, and I've seen firsthand how very awkward and uncomfortable talking about this topic makes people. I always tell clients and relatives not to see this as morbid, but to see this as a wonderful gift you're leaving behind for your family and friends who will be struggling handling your estate. You're making their lives so much easier and simpler by planning for these things in advance and being open about and having these helpful conversations with your family. It's an amazing presentation to leave behind." Kate, I'm curious, do you see generational differences in how people approach the end of life conversation?

Kate DeBartolo: One thing that's been really interesting to see is how much more open young folks are to this topic. They may be experiencing moving out of the home. They experience natural disasters, terrorist activity, they may love mountain biking. They realize, "Oh, yes, this is something I should do." Many of them are the ones to stop the line on something that may be happening with a grandparent to say, "What is going on? This is not how grandpa would have wanted things to go." There's often a skipped generational call out that's happening. I do think that the baby boomer generation is a generation that has pushed for a lot of change in many different ways.

We think about the birthing movement, but it wasn't the healthcare system saying, "All right, ladies, into the bathtub. Dads, come on in, camcorder." It was people saying, this is a human experience, not just a medical experience. The baby boomer generation really was the one to push for that. I do see some generational shifts that are happening here of an expectation of having a say in how things go, wanting people to listen to that. I think that Robin's comment of talking with her parents regularly, it gets back to this idea that it's not how you want to die, it's how do you want to live. Has anything changed that we should know about? We always want people to give current answers.

We're not asking people to think of lots of hypothetical medical scenarios that could play out. It's right now. If something unexpected happened and you couldn't speak for yourself, what would you want people to know? That regular timing is helpful. We have something called National Healthcare Decisions Day every year. It's April 16th, due to the Benjamin Franklin quote, "Nothing's certain in life but death and taxes." You do your taxes on the 15th and then on the 16th, every year, you review your advance care planning, all of these documents, because things may have changed in your life. There may be new people in your life. A nice annual chance at the very least to refresh on that. I am all in favor of doing this early and often.

Alison Stewart: Let's take some more calls. Nicole is calling in from Westchester. Hi, Nicole. Thanks for calling All of It.

Nicole: Hi. Yes, I had a completely different experience with both of my parents. They both had wills. They both discussed death and dying. They both made all the arrangements decades before they died. When they did pass, My mother was 64 and I was 24. My father was 84, and I was 47. My sister and I had absolutely nothing to do. I've forgotten who it was said, "You're going to need five death certificates." We got five death certificates. We didn't use any of them.

Alison Stewart: Wow. It sounds like your parents did it right. Let's talk to Christine from Croton. Hi, Christine. Thanks for calling All of It. You're on the air.

Christine: Hi, how are you? I wanted to piggyback on a previous caller who talked about revisiting documents every once in a while and having the conversation again. My mom had it all pretty much taken care of with lawyers with the living trust, and she was particularly careful because I have a brother with a developmental disability, and he was living with her in their house. What happened was she had a housekeeper come in during COVID, during the pandemic, where I didn't visit very often. She didn't want me to be exposed or expose them. During that time, the housekeeper colluded with a lawyer to redo all the paperwork without my mother understanding what she was signing.

They put all the paperwork into a safe. The housekeeper only knew where the key was for the safe. I wanted to emphasize, you could have everything, feel like you have it sewn up with good lawyers. We went to a different lawyer, and we went back to the original lawyer, also to redo the power of attorney and the healthcare proxy. She rewrote the will, which looked like the one previous to the lawyer getting involved with the housekeeper.

Alison Stewart: It sounds like good luck to you and your family, by the way. Becky, since your parents have died, this has become your focus of your work. You've become a death doula. Why?

Becky Robinson: I think, specifically, I became a death doula partially for book research, because I'm writing a book for all of this. Partially because I think the hardest part of all of this for me was when my parents were actively dying. I simply was not prepared for that process and what it was going to look like. Active dying is the moments immediately before death. It can be several weeks or several days, but it's the part where people are actively actually going through the dying process, which is a lot like birth, in a way. You labor into life, and you labor out of life as well. Parts of that were really disturbing for me.

For example, I didn't know that it was very common for people to hallucinate or to reach for things. People stop eating, and that's totally normal because the body needs to focus on dying rather than digestion. It's horrible because we provide comfort through food in this culture. It's awful when your parents want to stop eating. I started training as a death doula to learn more about that. It's like a weird backwards trauma response, but it was actually really helpful. Now I actually volunteer with hospice patients so that I can hang out with them through before that process.

Because obviously, people are in hospice sometimes for a long time before they're actively dying. Now I'm more used to that, and I can tell people about it, which I think is helpful. Give people a heads up that this is something that's going to happen.

Alison Stewart: Kate, before we wrap things up, what are the most important end of life issues we should focus on in our conversations?

Kate DeBartolo: I think going back to that idea of thinking of your current answers. What would you want right now if you couldn't speak for yourself? Who would you want to make your decisions and what are the values that you think are important for them to know? I think it can be really important to be sure that more than one person knows that thinking about that call in of the housekeeper situation or family with multiple siblings. You don't want somebody saying, "Well, mom never told me that." Making sure you've told more than one person what your plan is.

Again, even if you've done this before, to refresh it, keep thinking about it. I feel like everybody listening today has such a great excuse that you've been given the permission to do this. It gives you a great icebreaker as well.

Alison Stewart: I've been speaking with Becky Robison, founder of the website My Parents Are Dead. What now Becky, shout out your website real quick.

Becky Robinson: Deadparentswhatnow.com. It's pretty easy to remember.

Alison Stewart: Also, Kate DeBartolo, senior director of the Conversation Project. Do you want to shout out your website?

Kate DeBartolo: Sure. Theconversationproject.org.

Alison Stewart: Thanks so much for your time today.

Kate DeBartolo: Thank you.

Alison Stewart: Coming up on tomorrow's show, we'll have some live music from Josh Stokes, who performs in studio. We'll talk with New York Times editor Nikita Richardson about the city's best bakeries. We want to know your favorites. I'm Alison Stewart. I appreciate you listening and I appreciate you. I will meet you back here tomorrow.

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