Writer's Voice Episode 1040: Beth Pinsker, "My Mother's Money" and L. Annette Binder, "Child of Earth and Starry Heaven." [Francesca] Beth Pinsker, this is such an important book that you've written, "My Mother's Money," and by the way, I love the title. It begins with your mom calling from her rehab after surgery to complain about a $12.99 cable charge, and you describe that as one of the happiest moments of your caregiving journey, because it meant that Ann Pinsker, your mom, was back. Tell us about that. Why did that seemingly trivial phone call capture so much of what you were going through? [Beth Pinsker] My mom was extremely on top of her finances. She was the kind of person who got the credit card statement and looked over it every month. She still balanced her checkbook, you know, all the things that, you know, successive generations have left by the wayside. And the whole time I took care of her finances for her, I felt like she was going to come back online at some point because she didn't have a terminal diagnosis or dementia. She had complications after complication from surgery, so we always had this hope that she was just going to get better at some point. And better for me meant that she was going to come back around and want receipts, you know. She was going to want to know what I did, what money I touched, where I moved it, what my reasoning was for it. And I thought she was going to be mad at me the whole time. Yeah, and we still have not solved the problem of which one of us, me or my brother, charged a movie and didn't own up to it. I think it was him. He thinks it was me. I never called the cable company because I knew it had to be one of us. [Francesca] Now, you're a certified financial planner, a veteran personal finance journalist. You're someone who spent decades writing about money. What surprised you most about the gap between your professional knowledge and the reality of managing your mom's affairs? [Beth Pinsker] It's just how much of it isn't in any textbook or rulebook or anything that anybody talks about. You know, I would tell people for years in my career that you need power of attorney, and you absolutely do. But until I tried to use it, I didn't realize how difficult it was and how much more information people needed about actually being the power of attorney. But all the advice stops at, hey, you need power of attorney so somebody can act on your behalf. But the practicality of acting on somebody else's behalf is way more than is ever written about, until my book, of course. [Francesca] Yeah, and this is one reason I think your book is so important. Now, you did get a power of attorney, but you point out that some large percentage of people are solo agers that don't really have anybody in the family who can take that role. How does one get a power of attorney when one doesn't have a trusted family member that can do that? [Beth Pinsker] Right. So power of attorney, a lot of people don't realize this, but it doesn't have to be a family member. It can be anybody. Being power of attorney doesn't mean you get any money out of it. I think a lot of families, even there are fights over it because it's like a mom loves me best kind of situation. They think, oh, whoever mom made power of attorney is the one that she really trusts and really loves more. But it's really this thankless, really tedious administrative task, and you're better off not being the one who gets named power of attorney. But it can be a neighbor. It can be a friend. You can even hire a third party agency or sort of a trust manager. You can Google all sorts of versions of that language and you can end up with the right person. The key is, is that person is what's known as a fiduciary. And a fiduciary is bound to act in your best interest, which means they can't just go in and take money out of your accounts willy nilly. They have to be doing it because you need money and you need that money spent on your care. And if they don't do it properly, they can be held to account. So it's a safer role than a lot of families default to just putting somebody as a joint owner. They're like, mom, put me on your bank account so that I can take care of things for you. But what I found is that joint accounts might be great for a single bank account, but you need power of attorney for so much more. There was one night when I was at my mom's house and the cable box went out and I called to have them reboot it from the office and they wouldn't do that without a power of attorney. They're like, you're going to have to call back in the morning and fax that over to the business administration office. And I was like, oh my God, they make things just so complicated. [Francesca] And that was also true when it came to bank accounts. I mean, even more so I can understand why. I mean, the banks themselves don't want to be held liable for any kind of mistakes. But talk a little bit about the process you went through when dealing with a bank account. [Beth Pinsker] Yeah, the process I went through was a very complicated professional temper tantrum, to be honest with you. It amounted to no more than stamping my feet like a toddler and saying, you have to. And every time they said no to me, I just didn't take no for an answer. I was nice about it. The key point I try to get across is when I talk about me being, you know, sort of the term I use is relentlessly tenacious. A lot of people get carried away with that. You know, they're the type of people who are yelling into the phone at customer service or, you know, having their Shirley MacLaine moment and screaming in the hallway. That only works when you're right. When you're not right, the rules of power of attorney and healthcare proxy and all the stuff that you have to do as a caretaker, they are black and white. There is a brick wall that you will hit and you cannot yell or sweet talk your way around it. So if you don't have the power of attorney and you go into the bank and you say, I need access to my mom's bank account, they're going to say no and they're going to mean it. No matter what you say, no matter how hard you scream, no matter who you say, you know, no matter how many times you call, the answer is still going to be no, you're going to have to go to court. If you come in with an outdated power of attorney or one from another state that doesn't pertain anymore to where the person lives, you're going to hear the word no and you're going to have to accept it and you're going to have to go to court. [Francesca] You write that financial caregiving is something that most people enter sideways is the term you use. What do you mean by that? And why do you think so many families are unprepared for the role until they're already in crisis? [Beth Pinsker] We always want to keep our independence and older people especially want to keep dominion over all of their affairs. And so they think that letting anybody in as power of attorney or any, you know, knowledge base of how much money you have or how much income you have coming in, you know, we all think of this as secret information. And it's really not when you might need care someday, it's really vital information. Everything about your life has to be taken over at some point if you get sick. And if you don't tell anybody about it, you're going to be up a creek. Like my mom, when I started taking care of her, had been widowed for five years. My dad passed away five years before she got sick. And I'm a divorced person. So everything I do is just as an adult is just in my head. I don't consult anybody. I just pay my bills and do my business and nobody else knows about it. But if somebody had to step in and take care of me, like I had to step in and take care of my mom, it would have been previously too hard. I've learned a lot since I took care of my mom. And now I realize that the person who's going to be taking care of me is my older son, and he's 20. And so I have to have a life that a 20 year old can understand and could take over. That means, you know, if he goes looking for my life insurance, it should be in a folder labeled life insurance, because that's what a 20 year old would look for. You know, all my accounts are in one place. They're all labeled. I have my passwords written down. He has access to my phone. You know, there are all sorts of things I had to prepare that I learned because I had to do them for my mother with no information. My mom had the power of attorney, and she had a lot of documents set up. But we had not had a discussion that was like, mom, you know, how do you pay your electric bill? Is it electronic? Is it automatic? Do you write a every month? You know, you live in an apartment building. How does the maintenance get paid? You know, it turned out it was paid quarterly from a coupon book that was buried in the bottom of a desk drawer. Like, how was I supposed to know that? [Francesca] And also one really moving aspect of the book is, is actually, I mean, your mom took care of other people throughout her life. She was, you know, one of the most organized, capable people you knew. And the book really shows how the relationship between you and your mother reversed. What was the hardest thing about becoming responsible for someone you'd always seen as stronger and more capable even than yourself? [Beth Pinsker] That was really hard. And I think a lot of people face this. I don't know. You know, my mom was that force in our family, not my dad. And it's kind of like, when you lose your mom, and she's that kind of person to you, you don't feel ready to be a grown up. Like, she's the grown up, you know, I don't feel like I'm the grown up in the family, even though now I'm the like, you know, the matriarch, so to speak. And I don't feel ready for it at all. And I didn't feel ready for it at all. And having to make decisions for her when she's the person I trust most in the world was really hard, because I didn't feel like I was capable of living up to that. And the only reason I could get through any of it was that she was counting on me. She had all her mental faculties, most of the time, you know, she would go in and out of various complications and not be able to communicate. But, you know, her legs didn't work. And her arms didn't function very well, for the most part. And so she couldn't make phone calls and do stuff like that. And I had to do it. And, you know, when your family is counting on you, you can do hard stuff. You know, I do incredibly hard stuff for my kids, you know, most of it involves sitting and waiting while they, you know, play sports or, you know, driving them around and, and whatnot. But you do it because you're the parent. And that's what they need. With my mom. Yeah, it turned into that kind of relationship. I did stuff because she needed me to. And it was important for me to step up into that role. And you you had her trust, as a matter of fact. Yes, I knew all along that I, you know, we are a family that, you know, never misses an opportunity to say I love you. I'm proud of you. Thank you, and all of those things. And so we started out this conversation talking about that credit card charge. And, you know, I never told my mom that I never called the credit card company. It was kind of like a silent thing between us. She also didn't bank digital digitally, like she would never do any of that stuff online. But I had to take care of her finances in New York, while she was in Florida, and all the companies she dealt with were in Florida. So I had to deposit checks over the phone, and stuff like that. And we just kind of kept this like silent, you know, lock on it, like we never talked about it. And I started to feel just increasingly guilty about not doing things the way that she would have done them. And at some point, when I was writing columns about this at MarketWatch, I wrote one for Mother's Day about feeling guilty, like I wasn't living up to what, what she would have done for herself. And, you know, I was able to print it out and hand it to her and sit there while she read it. And then after she read it, you know, she cried and all of that kind of stuff. And then she told me that she was proud of me, and she knew that I could take care of things. And that the only reason that she had asked me to do any of this work for her was because she knew I could handle it. [Francesca] That's so beautiful. And, you know, it kind of points up another very important theme of your book, Beth Pinsker, of My Mother's Money. And that is that while caregiving often gets framed as an act of sacrifice, many of the people you interviewed and what you've just described saw it as an act of love, of gratitude, even redemption. How did their stories inform your understanding of what caregiving really means? [Beth Pinsker] The thing that surprised me the most was how many people had bad relationships with their parents, with the people that they were taking care of, and they still did it anyway. You know, my mom was my favorite person in the universe. Of course I was going to take care of her. You know, my dad was a much more difficult person, and my mom took the brunt of the caregiving at that, you know, at that point. But, you know, I did my part. And I did it because I loved my dad, even if he was difficult. But there were some family stories I heard where the, you know, the caregivers were abusive or narcissistic. Not the caregivers, the person being cared for was narcissistic or abusive, you know, an addict, you know, all sorts of things. And when that dynamic shifted, you know, parent-child to child caregiver as an adult taking care of a parent, especially if there was dementia involved, there was a reset. You know, the person that was, you know, difficult in the beginning was a different person in sickness. And the person who was doing the care, who might have been fearful as a child or willful or angry or any of those type of emotions, you know, was different as an adult. And when the power relationships switched, they were able to come back at that relationship from a different place. And get something out of the renewal of some sort of relationship between the two people. I thought that was beautiful. You know, like, it's great when you say my mother was the best person in the world, I would do anything for her because I loved her and do hard things. And another to say, my parent was awful. And I still took care of them. Like the strength of that kind of person is amazing. [Francesca] Now, let's talk about the money. This book is called My Mother's Money. One of the book's most startling revelations is how quickly even a sub, even substantial savings can disappear. Once someone requires full time care. I mean, I thought we were really burdened when I spent $700 a week, but you talk about $3,000 a week. [Beth Pinsker] Oh my god, yeah. Inflation and caregiving is well above normal national inflation. And it just goes up and up and up. And it really should be much higher than it is because the, even what you pay for care now isn't a fair wage for what the caregiving entails. I mean, it's a brutal 24 seven, you know, slog. And most of these people don't get benefits. They don't get paid vacations. You know, they're expected to be there and stay there and, you know, at the cost of their own families. And it's just a really hard job. And, you know, it, you have to pay for it. In some cases, there is no way to be a 24 seven caregiver in some circumstances. You know, dementia is not a working hour illness. You know, like people wander at night, they, you know, people need to go to the bathroom in the middle of the night. It's, it's consuming, you know, and it's really hard for one person to do it. And especially if you're a daughter in the family, say, and your parent needs care, what are you doing in your life? I've heard of people, you know, leaving their jobs, retiring early and doing all sorts of things like that. But then you lose your salary, you lose your benefits, you lose your health insurance, you lose, you know, the increase of earnings that would give you a bigger social security benefit down the road. You know, there are all sorts of things, you know, retirement savings, like you're giving up a lot if you take on that caregiving role full time, you know, in person, hands on. So you have to look at that as a family, whether it's one person can handle it, or you share it, or you hire it out. And sometimes that hiring out of the hands on care is a better economic choice for some families if they if they have the money for it. I would say that one thing I've noticed in this whole journey with this book, and in covering this topic for so long is that the financial caregiving part of it is really hard to outsource. You know, my mom didn't didn't want me helping her in the bathroom. That was like taboo. That was the part that was taboo for my mom. But she was not going to hand over her ATM card to the person who helped her in the bathroom and the pin and send her to the bank to get money out of the ATM for her. You know, that was a bridge too far for her. That's a, you know, potential, you know, avenue for financial abuse and just seem dangerous to her. You know, and when you're filling out a will and a trust and a healthcare proxy, and you say, okay, something happens to me, who do I trust the most to make medical decisions for me, that's gonna be a family member, you know, like, it's gonna probably be, you know, your close, you know, your oldest child, or, you know, whoever it is that you're closest to. And, you know, you can't really outsource that. [Francesca] And it's not just the personal caregiving in the home. I mean, you point out the kinds of costs that are involved in things like assisted living, or being in a nursing home, or in your mother's case, at one point in a skilled nursing rehab facility. These are astronomical costs that I don't think people bear in most other countries in the world. [Beth Pinsker] Right. The biggest misconception out there is that Medicare pays for this stuff. And the disconnect is that, you know, my mom went into the hospital. Yes, Medicare covered my mom's stay in the hospital. But there are only a certain number of days you get. And my mom came right to the edge of what those days were. And then Medicare covers a certain number of days in skilled rehab. But it's a doctor guided process. So you only get the number of days that the doctor says you get. And my mom, again, came right up at the edge of what was allowed. And when those days run out, you got to pay out of pocket, or you got to go on Medicaid. And those are the only options that there are. Medicare doesn't just keep paying. So people don't understand that at some point, you know, if their person outlives, you know, those Medicare days, that they're going to be on the hook somehow for paying for this, not the caregiver, but the person who's sick. And that's a big discussion to be having, you know, of what you're going to do, because like, my mom was in rehab. But her apartment was sitting there, and we had to keep paying the mortgage. You know, so you're often paying for caregiving costs on top of regular living costs. And that's what's so expensive. And then you get to the point where you realize in practical sense, being in a full time facility, isn't sometimes enough. Like my mom for much of her stay in any of these places, she couldn't press the call button. So you know, how are you going to leave her alone in a room, even in the ICU? They didn't stay in the room. So, you know, she was scared. She was, you know, lonely, she didn't want to be left alone, you know, so we decided that the best use of her money that she had was to keep her home help aides, and just have them sit in the facility with her. Because, you know, like the thought of her needing something at 3am, like, you know, sitting in dirty undergarments killed me. So that cost was worth it to us. But that was because my mom had that money. And we decided to spend it even though it wasn't our money. That's why I called the book My Mother's Money. Every time you turn around, you're making some decision about somebody else's resources. [Francesca] Yes. And you point out that so many people are afraid to spend the money for different reasons. Not only the person themselves may be afraid, I know my mother was afraid that her money would run out before she died, even though she actually had enough to cover it. And I was always reassuring her that an expense for her comfort was something that was important for us to make. But you know, so many people don't even have these kinds of resources. And even if they do, Medicaid is pretty strict, you have to pretty much become, you know, you have to enter abject poverty in order to qualify for Medicaid. [Beth Pinsker] Yes. In a lot of states, the income and asset limits are very, very low. And this is for the time when you are truly out of assets. But the cost of nursing care is so catastrophic, that more than 50% of people who end up in full time nursing care are on Medicaid at that point, like you, no matter how much money you have, it's going to run out at some point. There was a story in the book of a woman who was a former boss of mine. And both of her parents ended up in, you know, nursing care, assisted living at the same time, but they couldn't be in the same facility, because they had different needs. So she was just shuttling back and forth between them all day. And her father passed away first, but her mother had dementia and lived for 12 years. And she had enough money to pay for the assisted living. For most of that time, she went into hospice, she outlived hospice, she got down to her last dollars that she had saved. And the brother and sister were left with the decision, you know, mom is clearly at the end of her life. But she has been paying for assisted living out of her savings. The assisted living doesn't take Medicaid. So are they going to move her to another facility to get paid for by Medicaid, because they don't know how much longer she's going to live? Or the brother and sister going to shell out for the assisted living and pay for it as long as as need be? Like what a heartbreaking decision, you know, because you really do have to put your own money on the table and you don't know what you're what you're in for. She could have lived another year, another two years. But she ended up living one month and one day past that time period. And so they split that cost. And then, you know, day two of the into the second month, the nursing home calls and or the assisted living calls and says, you know, you're going to have to be charged for another month if you don't get her stuff out of here. And they're like, Oh, crap, we're not ready for this yet. You know, she just died. We haven't had a funeral yet or anything. And they had to go clear out her room so that they could not have another month to pay for. [Francesca] So Beth Pinsker, your book, My Mother's Money, is full of encounters with Medicare, Medicaid, long term care insurance, which we haven't spoken about yet, the IRS, Social Security, banks, the VA, all these systems. After navigating these systems and the people that you spoke with doing that, what struck you most about the way America handles aging and caregiving? [Beth Pinsker] We make it so hard for everybody. Oh, my gosh, it is just a morass of red tape out there. And the only way to get through it is to get through it. There's no way around it. There's no easy way anymore. With two factor authentication and voice recognition and signature verification. It's not the way it was even 10 years ago. So you really have to know what you're up against and know what you can do about it and try to set everything up in the right way so that you don't run into these roadblocks. Because it just isn't the thing that you want to be dealing with. And what I found was there is a solution to all of these problems. If you don't do it the right way, there is a way out of it. It's just messy. So it's on people, both the caregivers and the people that they're caring for. The ideal place to catch people is when they're like my age, and they have time to do things thoughtfully and carefully and get a will and get a trust and set up beneficiary designations, make sure their kids know what they're doing. And then they don't have to think about it again. And if you miss your window in your 50s, then certainly do it in your 60s. And if you miss that window, just get on it now. Today is a good place to start. And the thing about this task is the reason why the statistics never change on the number of people who have a will, it's always 30%. 30% of people have a will. A new number came out this past year. 11% of people have a power of attorney. Both of those numbers should be 100%. 100% of people need a will of some sort. 100% of adults over the age of 18 need a power of attorney. There's no excuse for anywhere in between. There's nobody who gets out of that responsibility. So how do we get people to do it? It has been on the bottom of everybody's to-do list for so, so long. What I wanted to do was tell my story to try to get people to understand the urgency of it. As a journalist, we're storytellers, right? We get people through stories. People understand implications and consequences better when you tell a story. So most often people encounter knowledge about these sorts of things in to-do lists. Just bare bones. This is what you do. Check off this list. And nobody ever tells them why. Why are you doing this? What's going to happen if you don't do it? So that's where I really wanted to focus my efforts is because if you understand, as a human being who has people who love you, that if you don't do these things, you're going to make life harder for those people. They're going to be trying to help you and it's going to be heartbreaking. And if you understand that and you're a responsible, healthy, proactive human being, you're going to read my book and you're going to go, oh yeah, I'm going to go do this now. I'm going to put this at the top end of the to-do list. And if I can reach even a few people doing that, then that's what I've set out to do. I've reached my goal. [Francesca] Beth Pinsker, thanks so much for joining us. (Transcribed by TurboScribe. Go Unlimited to remove this message.) [Francesca] Welcome back to Writer's Voice. I'm Francesca Rheannon. Go to writersvoice.net to listen again, like and subscribe to the podcast. It's the fear that haunts many a family, a loved one or oneself getting Alzheimer's disease. The prevalence of Alzheimer's is projected to increase significantly in the coming decades. By 2050, the number in the U.S. is predicted to rise to nearly 13 million, according to the Alzheimer's Association. This nearly doubles the current number. When novelist Elinette Binder's beloved mother began to exhibit signs of dementia, Binder not only took on making sure her mother's needs were taken care of, she also began chronicling her mother's decline and her own reactions to it. In the resulting memoir, Child of Earth and Starry Heaven, Binder recounts her mother's journey through Alzheimer's and her own emotional and spiritual awakening during that time. Drawing on classical texts, cultural history and personal caregiving, her memoir explores grief, presence and the enduring mystery of consciousness. Let's hear my conversation with Elinette Binder now. Elinette Binder, welcome to Writer's Voice. Actually, welcome back to Writer's Voice. [L-Annette Binder] Thank you very much, Francesca. [Francesca] The last time we spoke with you, it was about your wonderful novel, The Vanishing Sky. This is a memoir, Child of Earth and Starry Heaven. It's a memoir of your mother's decline into Alzheimer's disease, and it's a kind of spiritual journey, I would say, also for you. Is that correct? [L-Annette Binder] Oh, absolutely. I think, you know, watching her struggle with dementia raised so many big questions for me and really made me explore some of the things that I'd studied before and sort of taken for granted. And yes, absolutely, it was a journey of spiritual growth for me as well. [Francesca] And say something about the title. [L-Annette Binder] Yes, I was a classics major in college, so I studied Latin and ancient Greek. And Child of Earth and Starry Heaven is from the ancient Greek. The Greeks believed that, generally speaking, when you die, you drink from the river of forgetfulness, from lefe, and thus released from all the sort of the memories of life, and you're sort of free then to be a shade in the underworld. But for the devotees of Orpheus in the ancient world, they had a different approach to the release of memories after death, and they actually recommended that you drink from the lake of memory instead. And so some of them would carry little scrolls that they would wear sort of as pendants to remind them of what to say to the guardians of the underworld when they finally got there so that they would remember not to drink from the river of forgetfulness, but instead to drink from the lake of memory. And so they were instructed to say, I am a child of earth and starry heaven, but descended from heaven. You yourselves know this. I am parched with thirst and dying quickly. Give me the cool water flowing from memories lake. And so that really that really struck me as I was thinking about both the classics that I'd studied in my youth and then watching my mother's struggle and sort of the big questions that it raised for me about consciousness and that that sort of image of the choice between remembering even when remembering might be painful or forgetting and sort of embracing oblivion that really came to a head for me as I watched my mother decline. [Francesca] And before we get into the book itself, well, this is part of the book itself, actually, I would love to have you read your poem that you composed. It's at the beginning of the book and it has no title. [L-Annette Binder] Gladly, storms gather in your eye, gather and recede and forgetting blooms in the space they leave. The heart is just a muscle. I tell myself every time I come to visit. It beats and beats until it doesn't. Electrical charges is all we are. I tell myself this too. Simple charges bridging those dark spaces. And they fade like stars. They fail like all stars must. Collapsing inward and breaking into their elements. But nothing can explain the manner of your departure. Tangles and plaques, the doctors say. It's a matter of cascading failures. But doctors are blind to the tides. The ebb and flow of awareness and the hope that blooms with it. Only to wither. What strange attraction steals you from this world? What ocean sway against the pool of what strange moon? [Francesca] It's a beautiful poem and listening to you read it made me also realize how much of the book itself is contained within that poem. Yeah, that's true. Say a little more about that. [L-Annette Binder] It captures the ebbs and flows, the sort of waxing and waning of her cognition and how it would raise my hopes only to dash them the next time I came to visit. But how it also how I also got sustenance from the good days. You know, they always say there's good days and there's bad days. But those those good days gave me gave me sustenance and sort of helped me through the bad days that inevitably followed. I think also the sense that there's so much that doctors know, but there's even more that they don't know, especially about dementia. You know, you have the brightest minds working so hard trying to figure out what's causing what's causing cognitive failure. And so far, they just haven't had much luck. And so I think there's also that sense of frustration that I felt of isn't there something that we can do? I mean, she's healthy in every other way. She took such good care of herself and walked and exercised, you know, and so it captures it captures all of that. I think the mystery of it. [Francesca] Before we talk about your mother's dementia, tell us a little bit about her before she got dementia. [L-Annette Binder] Oh, goodness. I have never met a more self-reliant, resilient person. She wore lipstick to shovel the snow. She cleaned out her rain gutters well into her 70s, climbing on the ladder. And she'd call me, you know, when I lived out east and say, oh, I'm going up on the ladder. And I would worry, but I knew there was no talking her out of it. She changed her own oil on her 74 Chevy Nova, because the fellows at Jiffy Lube were a little sloppy for her tastes. She loved animals and loved children. She was very proper and very organized, but she had a soft spot for dogs in particular and always had a milk bone or two in her purse. But she also had a lot of eccentricities. And I think those eccentricities in particular made it easier for me to go into denial about what was happening with her cognition. No ATM card ever because she didn't trust machines to sort of distribute her money. Very dodgy, very iffy about the very idea of credit cards. You know, and so I think there were there were certain technological challenges for her that made it very easy for me to overlook what was happening once it began. [Francesca] Yeah. You say that your realization that she had dementia and actually she had Alzheimer's disease took years actually to understand the signs. When did you realize and how did you realize that she did have dementia? [L-Annette Binder] It became pretty clear when she stopped taking her diabetes medicine because she was so disciplined about her diabetes that she was able to manage her blood sugar without insulin for decades. And she went to one appointment. Everything was looking great. Six months later, her numbers were completely out of whack. And so she took me into her closet where all the bottles were just lined up like little chess pieces and they were all full. And she had years worth of them. So I began to realize, oh, my goodness, she stopped taking her medicine. And that's why everything's out of whack. And so I thought, well, let me get her one of those weekly pill organizers. And so I sorted everything into the weekly pill organizer. And when I left that day, I said, OK, now, you know, when it's time, take the next days worth of pills. And so when I went to see her the next day, I realized with an absolute jolt that she'd taken the whole week's worth of pills. And it became clear to me at that point that something organic was happening. It wasn't just eccentricity anymore. It wasn't just, you know, maybe getting a little bit laxer as she got older, that something was actually going on with her cognitively. [Francesca] And how aware do you think she was, at least in the beginnings of her decline, that she had problems? [L-Annette Binder] You know, I think she was aware that something was off. But I think she framed it in terms of her diabetes. And so she'd say, well, I can't really drive anymore because my blood sugar, it might drop really suddenly or it might spike. And and so I think she knew something wasn't right, but I'm not sure she ever really put it together that it was that it was Alzheimer's. And I found that to be a blessing for her, honestly. You know, I think about half of patients don't realize that they have a cognitive decline. And so I think my mother fell into that group and I was grateful for it because for her, she told me multiple times during her younger years, there's nothing worse. She would go visit friends of hers who were in memory care long after their families and stopped visiting in some cases. And she would come back and she would just say anything but that, anything but that. And so when I realized it was happening to her, but she stayed remarkably content through most of it. I was just incredibly grateful for that. [Francesca] And one thing that really struck me is what a good daughter you were. You really took good care of your mom. Talk a little bit about that process. I mean, it seems that you were pretty lucky in finding some good places for her. [L-Annette Binder] Incredibly lucky. And thank you for your kind words. I mean, I tried and there are so many shortcomings that I see in myself, you know, as a person and as a daughter, I wish I could have done more, but I definitely tried to spend as much time with her as possible throughout the, you know, before she ever had cognitive decline. And then certainly once it began, we were incredibly lucky to find good places. I was really hoping that she could stay with us. And it became clear that that was just not going to work. We didn't have a guest room on the main floor. We didn't even have a full bathroom on the main floor. And navigating stairs was going to be too hard. And we weren't going to be able to add on anything to the house. We were working on a much tighter timeline than I had ever imagined. So we started looking around here locally in the upper valley of New Hampshire, and we're just really blessed to find two places. She was in two different facilities. And the second one in particular, we were just so lucky because the people there were lovely. The residents, it really felt like a cocoon. And so I spent many hours there just about every day. And I just was grateful the entire time that we were lucky like this. [Francesca] This is Writer's Voice, and I'm Francesca Riannon. My guest is Annette Binder, and we're talking about her moving memoir of caring for her mother after an Alzheimer's diagnosis. The memoir is called Child of Earth and Starry Heaven. So you struggled to find a cure. Of course, we don't have a cure. You say you spent your evenings looking for a miracle. What were some of the things you were looking into? And where are we right now with understanding Alzheimer's disease? [L-Annette Binder] Now, I spent many evenings looking at everything from supplements that might be helpful, exercise, which we definitely tried. We found a personal trainer that worked with my mom a couple of times a week who specialized in working with the elderly. And then I also took her on walks around our neighborhood. And then I found some MIT studies about the possible beneficial effect of 40 hertz frequency clicks and also flashing lights. And so I tried that. And there might well be something to both of those. But I think at the point that we tried it with my mom, for whatever reason, she might have been her cognitive decline might have been too far advanced or maybe it just wasn't going to work for her. But we certainly didn't notice any improvement or any even slowing down of her decline. Her decline was precipitous. And when I compared it to other neighbors in her different residences where she lived, it always struck me as being relatively steep compared to compared to our neighbors for whatever reason. So, yes, I think we definitely looked, spent many hours looking. And I think there's still you read just about every other day about possible advances being made. But so far, I don't think we've really gotten there yet. When I spoke to a neurologist after my mother's passing who looked at her scans with me and was nice enough to walk me through what he saw, you know, I asked him, would it have helped if she'd gone on some clinical trials and tried medicines and really aggressively tried to treat it? And he said, not yet. I'm afraid not yet. You know, I think we might be on the cusp of something, but not yet. [Francesca] Um, different cultures have thought of dementia in different ways. And you write about this, Annette Binder, in this wonderful book, Child of Earth and Starry Heaven. Tell us about some of the different ways different cultures have thought about dementia and including that the indigenous peoples of the Americas. [L-Annette Binder] Well, I started because my background was in classics. I started with the Romans and the Greeks and then went out from there. And Cicero, the Roman orator, had a very definite, a very modern almost view of old age where he basically said, you have to be steadfast. You have to be moderate. You have to exercise and have a moderate diet and protect your cognition by working your brain. And if you do that, you will avoid the difficulties of memory loss. You will stay a vigorous, sort of vibrant thinking person. And so in so many ways, Cicero, who lived, you know, 2000 years ago, more than 2000 years ago, is so modern. I found it stunning. But then you had another group of ancients who really believed it was inevitable. You know, it was just the sort of the third age of man. You sort of have this age of vitality and cognitive sort of vibrance. And it's bookended by your sort of child years and by your older years. And those are the eras of dependence. So, you know, that was sort of what I started with. And then I moved out from there. And, you know, the Chinese had a very definite idea that it was the result of an imbalance in your chi, in your energy. People from India had a similar sort of approach and called it Kitanasa, which was also sort of not just a loss of mental acuity, but a loss of heart. It was really centered in the heart. So I think, you know, the approaches have varied so much and it's been for thousands of years. And the same is true with the indigenous approaches, loss of heart, that I think it really it's so modern. The debate is so modern. Is it inevitable or is it something that can be warded off with exercise and, you know, taking classes? And I mean, those those debates are going on now and they have been going on for millennia. [Francesca] I found very affecting the way you seem to move back and forth. You know, there were times when you really focus on the losses and other times when you focus on the beauty or the gifts. [L-Annette Binder] Oh, absolutely. I mean, there were so many moments of despair during my time on the memory care floor with my mother, just utter despair when she, you know, days when she didn't recognize my face or at least appeared not to recognize my face. Luckily, those were relatively few, but there were also moments of gratitude and even moments of grace on that second floor memory care unit. And I don't mean this sort of easy gratitude of saying, oh, well, I have so much personally to be grateful for. Look at my daughter. Look at my husband. You know, that's not what I mean. I mean, there were actually moments of gratitude just watching people living their lives on the memory care unit because it was so easy to fall into life and the rhythms of life on that floor and to see the affection that people still felt and how much love they still had in their hearts and how often they were still really present. I mean, everyone had bad days. You know, things ebbed and flowed. There was that waxing and that waning. But at their core, my mother, I still felt very strongly was there. When I looked in her eyes, she was my mother. And yes, she was having cognitive issues and something was happening in her brain. But I felt like her consciousness remained intact and accessible on many, many occasions. And so I just saw a lot of things to be grateful for, small moments of affection and kindness the beauty of family members coming and caring for their loved ones and just sitting with them and having a simple meal. Because I think especially near the end, my mother didn't talk about the past anymore. And she certainly didn't think about the future. So what she had and what I had with her was just that moment, just that moment in time. And I was so incredibly grateful for that. And I guess what it taught me is we sort of fool ourselves into thinking and planning for the future. And that's a good thing, I suppose, because otherwise our lives would be very disjointed. And we dwell a lot on the past, or at least I do. But really what we have and the only thing we have is ever what we have right at this exact moment. And so I guess spending so much time with my mom, especially near the end, taught me to cherish that present moment, just to be there for that moment and be grateful for it. Even if it's just as simple as having a popsicle together. You know, it's something that I'm so grateful for and that I try to carry with me now. [Francesca] And right there is a spiritual lesson to be in the moment, like practical Zen. [L-Annette Binder] Yes, absolutely. And, you know, it's easy to read about that, but you actually have to live it. If your loved one has a disease like Alzheimer's or one of the dementias, you really have to live it because otherwise, I mean, it's easy to sort of say it in the abstract, but all you really have is that moment because that's what they have. Every dessert is just, you know, I think I say surpassingly sweet because they are just lingering on their dessert and enjoying it. And how could you not want to do the same with them? You know, we're not promised tomorrow, but we certainly have our our pie at the moment and we're going to enjoy it together. So, yes, absolutely. I think it was life altering in so many ways. [Francesca] My mother didn't have Alzheimer's, but she had what they call mild cognitive impairment, which is really not so mild. She would get paranoid. She had Sundowners syndrome. She lost the ability to use a telephone. But she could also have completely lucid conversations for quite some time. It did ebb and flow a lot. But one of the questions I struggled with, and I think I actually struggled with more after my mother's death because I wondered if I had done the right thing. I wondered if I should have lied to her more. I mean, my tendency was to always try to orient her to what was really going on. And that was more my own need, I think, for her to be lucid than her need. [L-Annette Binder] Yeah. [Francesca] Talk a little bit about that. You say on the memory care unit where your mother was living, the AIDS didn't contradict people. They did lie to people quite easily to kind of ease their anxieties. [L-Annette Binder] Yes, I think about some things, absolutely. You know, you would have people waiting for the train. And I think it was really a matter of just easing their anxieties and deflection. So I think they tried to keep the lies to a minimum, but sometimes it's inevitable, you know, but it's more deflection. I'll sit here and wait with you and then guide the conversation somewhere else. Because I think really what mattered to me was keeping my mom content and feeling the love that I had for her. And so I think anything that I could do to keep her content, but not lie about things like medicine or doctor's visits or things like that. But it was a really hard balance to strike because I don't like to lie and you can't really easily correct someone. You can't really say if someone wants to pay for their meal, you can't say, well, no, you're in memory care and the meals are covered. You know, that would just be unthinkable for me to say, you know. So you find ways to deflect and then change the topic and keep the conversation going, keep that connection going. But it's such a hard thing because you don't want to lie or you don't want to lie any more than absolutely necessary. You don't want to cause, you don't want to wound the person with the truth, but you also don't want to lay your lie upon lie. And that is such a hard balance to strike. [Francesca] You also mentioned the phenomenon of people with dementia becoming cognitively clear, totally clear just before they die. And, you know, and I just mentioned that my mother also would move back and forth between lucidity and confusion. What does this really mean then? If people can in fact recapture their lucidity, what does that mean about the brain, about the mind? What are your thoughts? [L-Annette Binder] Well, I think that is a huge question. A scientist named Michael Naum has sort of looked at what he calls terminal lucidity and other scientists call paradoxical lucidity to try to understand what's going on there, because there are so many documented cases of that. And I think scientists are beginning to take it seriously now and look into it in a really disciplined way, trying to evaluate is there some sort of chemical change that happens shortly before death that might allow, that might sort of unlock the memory sort of mechanism and the retrieval mechanism for people who are otherwise cognitively impaired. And so there are ongoing studies right now looking into what might be at play there. And, you know, one thing that Michael Naum in his study suggested is, well, there's a lot we don't really understand about the brain. There's people who lack the vast majority of their brain, actual physiologically, they lack the brain and yet are still able to function at a relatively high level, even though they lack the different lobes that might be necessary for what they're doing. And so, you know, the sort of idea of the brain versus the mind, that sort of duality, are we just our organic brain or is there some other ineffable sort of mind component to it, which leads into the question of the soul and of consciousness. And I think that is still so unresolved. You have Nobel Prize winning neurologists and neuroscientists like Dr. Kandel at Columbia, who basically says we understand so much about the mechanics of memory building and how the cells on a cellular level, how they interact to relay information. But ask me why I like a red rose and I can't answer it because that's a question of consciousness that's really in some ways the final frontier for neuroscientists and neurologists. And so I think terminal lucidity raises those questions in sort of boldface, you know, with like flashing lights, like what's going on there? And I'm hopeful that the ongoing studies might reveal some of that. [Francesca] And finally, Annette Binder, you must have thought, what is coming up for me? Is this something that will happen to me as well? How did your experience with your mother, not prepare you for what, because we don't know, but how did it create in you a sense of, all right, how would I deal with this if this happens to me? [L-Annette Binder] You know, in so many ways, strange as this might sound, I found it reassuring because seeing my mother remain herself, albeit with cognitive decline, was reassuring to me. And so I think, you know, hopefully this won't happen to me in my future years, but, you know, if it does, in some ways I found it reassuring to know that human kindness and sort of the love that I felt on that ward is something that might sustain me and my loved ones if we do have to go through that journey. And I guess the other thing that I learned is exactly what we were just talking about, which is I'm really trying to savor every moment, every moment now, because I want to live at that sort of heightened level. I want to keep that feeling of just really just enjoying the time that I have now because nothing else is promised to me. And so I think those are the two things I carry with me is that, you know, the love that my mom was capable of feeling and that I felt for her survived her cognitive decline, and I have some concrete tools now to sort of think about life, to think about the big questions and to enjoy sort of my day-to-day life that I didn't have in quite the same way before. [Francesca] So it's really a gift, your mother's final gift in some way to you. [L-Annette Binder] I think that's absolutely right. [Francesca] Well, the book is Child of Earth and Starry Heaven. It's beautifully written. It's profound. L. Annette Binder, thank you for talking with us. [L-Annette Binder] Oh, thank you. It's been a pleasure.