Care for the Caregiver

Author Fred Plotkin brings his background in opera, food, and all things Italian to providing emotional, intellectual, and physical support for four close family members over several decades. In this podcast, he shares the joys and challenges of respectful caregiving.

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Transcript

[00:00:00] 

[00:00:01] Stephen Calabria: From the Mount Sinai Health System in New York City, this is Road to Resilience, a podcast about facing adversity. I'm your host, Stephen Calabria, Mount Sinai's Director of Podcasting.

[00:00:13] On today's episode, we welcome Fred Plotkin, a lifelong professional in arts and letters. 

[00:00:18] Mr. Plotkin has worked in opera since 1972, having worked at La Scala in Milan and as performance manager of the Metropolitan Opera in New York City, and is the author of the best selling textbook on the subject, Opera 101.

[00:00:32] He is the author of ten books, mostly about Italian cuisine. His most recent book, co authored with travel writer Rick Steves, is called Italy for Food Lovers.

[00:00:42] Since the 1990s, Mr. Plotkin has also been a caregiver for four aging family members, three of whom lived to over 100 years old.

[00:00:50] Mr. Plotkin's journey of love and resilience through decades of caring for family members who could not care for themselves is a testament to perseverance in the face of difficult, often worsening conditions. We're honored to have Mr. Fred Plotkin on the show. Thank you.

[00:01:05] Mr. Fred Plotkin, welcome to Road to Resilience, sir. 

[00:01:08] Fred Plotkin: Thank you very much. 

[00:01:09] Stephen Calabria: Could you start off by giving us a little bit of your background? 

[00:01:12] Fred Plotkin: Well, we are recording in Mount Sinai Hospital, where I happened to be born a number of years ago in 1956. I am a Manhattanite, lived here most of my life. 

[00:01:23] I'm well known for my work as a lot of things, but especially regarding Italy. And so I've spent a lot of my life in Italy because of my current caregiving role. I've not been there for more than four years and it's something I miss terribly. 

[00:01:38] And it's the only hole in my life right now because a lot of who I am is awakened in Italy in ways that it could never be in the United States. Nothing wrong with the U. S., but Italy has a different kind of approach to life. Something I try to live here when I can, but I don't always find correspondence with that. 

[00:01:58] Stephen Calabria: You've had close family members for whom you've acted as a caretaker, and that's why you're on the show today. Could you tell us a little bit about them? 

[00:02:06] Fred Plotkin: There was my beloved father. He died of a cancer, rather rare cancer, at the age of 73 and while his relative time of illness was brief in the sense that it was about 8 or 9 months, I made a point of doing everything I could for him to give him new experiences.

[00:02:26] I knew of his illness before he did. And I made a deal with the doctors that we have a window of time where I do things with dad without the specter of death hanging over us. 

[00:02:38] And even after that happened, I made sure that he had new experiences every day. So, he had never been to Italy and I took him to Italy and we happened to work a grape harvest in Friuli Venezia Giulia.

[00:02:53] And a few months later, dad knew by then that he was dying. For his last meal before he went into the hospital, I took him to Phyllidia, owned by Lydia Bastianich, who was a friend of mine. 

[00:03:04] And I didn't tell her what was going on, but she's a very sensitive person and she knew that it was particular. And she cooked our meal herself. And I ordered the wine that was made of the grapes that Dad and I harvested about six months before.

[00:03:20] It was a little premature to order it, but he understood. And he realized that his continuity was there in that wine, if nothing else. And I made him understand that his continuity was there in me, in other family members, in the wine. 

[00:03:37] Beauty he created in the world as a musician, and although he was very depressed about dying, and I couldn't fix that. I made his last days very meaningful. And I had WQXR Radio with me and one of their hosts program an hour of music that he would have liked. 

[00:03:55] And on two nights before he died, at 11 p. m., I turned on the radio in the hospital in Sloan Kettering, and it was one hour of music from my father. And the host, who knew my father, wished him a good night.

[00:04:13] And he looked at me and he said, I think I understand why you programmed the music you did. And it was a combination of Richard Strauss, Beethoven, and Xavier Monsalvatge. These were all very deeply meaningful pieces of music to him. 

[00:04:30] And by the end, he said, now I don't have to speak anymore. And after that, we communicated by singing to one another. He was a musician. And I realized then that my first language was not English, it was music. 

[00:04:46] And the doctors and the nurses and the staff stood in the doorway and were watching us. I wasn't performing for them. And they said they'd never seen a family relationship like that because when the kind of cancer was so devastating without hope, usually people give up in grief.

[00:05:05] And I felt as long as there was life he had to have meaning and attention for his family. And, and I wanted to be with him and we kept on WQXR through the whole time and he died at 2. 20 in the afternoon. 

[00:05:22] And just by coincidence, Cecilia Bartley, the Italian mezzo soprano was singing parto parto. I'm leaving. I'm leaving from Mozart's La Clemenza di Tito. And he died with that music and it was the right music to go with. 

[00:05:36] Stephen Calabria: So that was your father. 

[00:05:37] Fred Plotkin: Yeah. 

[00:05:37] Stephen Calabria: And then, you said there were three others. 

[00:05:40] Fred Plotkin: Yes. Well, the other three were and are, I'm taking care of one now, completely different in that they lived incredibly long lives.

[00:05:49] My aunt lived to 103 years old. Her husband died 10 weeks before she did at 102. It was her fifth husband, so she lived a full life. And, he had dementia, but a lot of energy and a lot of appetite, but he would forget that he had just eaten and complained that no one was feeding him. 

[00:06:10] My aunt had completely clear mind, but a very frail body. And she would doze off at the table and he would become frightened that she had died at the table. And there was a constant management of these different needs and states at the same time. 

[00:06:27] Because I was taking care of two at one with a caregiver who did a lot of their toileting and washing and so on. But I did all the cooking and, after he died, she declined clearly, but I engaged her every day by playing Scrabble because her mind was really sharp. 

[00:06:46] And five days before she died, she beat me at Scrabble and I didn't give her any advantage. I didn't move any letter to make it easy for her. And she put down a word, S M O L T.

[00:06:58] Smolt. Smolt. And I said, Aunt Sylvia, I don't know what smolt is. She said, you don't? Yeah, I don't know what it is. And she had a Scrabble dictionary and she said, look it up. Smolt are baby salmon. 

[00:07:14] And so the fact that five days before she she was that sharp. And she did her own mathematics, her own billing, everything. She was very administrative. 

[00:07:26] She's someone who evolved from being a Christian Scientist, and therefore rejecting the medical support, to someone who, when she developed a breast tumor at 85, I said, Okay, Aunt Sylvia, you're Jewish now, and I took her to a doctor was not Jewish. 

[00:07:44] It didn't matter. That's not ever a point who happened to be from Pakistan, and she was treated. And after that, she became a big believer in medicine and started raising money for medical charities for people who could not afford medical access. 

[00:08:01] She lived in Palm Beach County, Florida, not in Palm Beach, but West Palm Beach. And became very politically active late in life. And campaigned for candidates she believed in.

[00:08:13] First Hillary Clinton, then Barack Obama. And it was quite a change from someone who had been a Rockefeller Republican. I'm not talking about politics, except to say that she grew and evolved, and that her focus on the world in front of her was changing. 

[00:08:30] She paid attention to the news, and she paid attention to what was happening in the world, and she reacted to that in her way. 

[00:08:37] Whether we agree or disagree is not the point, but she was very engaged with the world in a way that her husband, my uncle with dementia, was not engaged with the world.

[00:08:47] And it was a challenge because she wanted him to be happy and safe, and part of my job was to assure that.

[00:08:55] But, I think she also was eager to do things, and I had to organize their lives so that he was looked after by the caregiver, while I saw to her engagement with the world.

[00:09:07] Whether politics, or food, or culture, or whatever, or cards, somehow playing cards kept her mind sharp. And so I took care of them for 15 years, and my aunt was 15 years older than my mother, who is still alive, and she is a hundred and one and two thirds, as she will point out to you, and is Famously beautiful, and people look at her for her beauty and therefore miss out on the personality.

[00:09:42] They find her kind, but they're just sort of astonished at her natural beauty and her allure, which is something we don't think of in very old people. But what's interesting is that because she never put a lot of stock in that, she does not like being treated as an object.

[00:10:00] She wants to be treated as a person. And that's something I learned a long time ago with her. 

[00:10:06] But certainly now that she's very old, that she wants the full person spoken to and not the object. She cares about her look. She wants to be presentable, but she doesn't have to be in Vogue. 

[00:10:20] Stephen Calabria: Well, it's tough out there for us gorgeous people, amirite?

[00:10:23] Fred Plotkin: Speak for yourself. 

[00:10:25] Stephen Calabria: Your mother has dementia and she is now the second family member for whom you've served as a caretaker. What do you come to expect when you're taking care of someone with dementia? 

[00:10:37] Fred Plotkin: It's interesting that you say caretaker because I say caregiver, and I'm not sure if there's a distinction there. It's just equal terminology, but I don't reject the word caretaker, I do that too. 

[00:10:49] Somehow, because caretaker sounds like custodial, whereas caregiver is more an active choice coming from the person doing the caring.

[00:10:59] Stephen Calabria: It's almost altruistic in a way that caretaking is not. 

[00:11:03] Fred Plotkin: Yeah, caretaking is a responsibility and caregiving is a choice. 

[00:11:06] Well the main differences are that my uncle, who was a very sweet man, but was very alarmed by not knowing what was going on, and he also, frankly, was very vulnerable to people who wanted to take things.

[00:11:24] For example, there was a man that he thought was honest, who came and basically walked off with a lot of my uncle's jewelry for not much money, saying that he was giving him a deal. I was not there that day. And, so I've learned never to let that happen and certainly won't happen to my mother. 

[00:11:42] The other thing is that my uncle did not have intellectual interests. He liked entertainment. He loved his food. He generally had a happy disposition and he would sing all the time. Too much. 

[00:11:57] But he also would have moments where he would see things on the floor that were not there. He would see birds on the floor. He would see ashes all over the floor and become very upset because why are those ashes still there and what burned?

[00:12:14] And why are the birds there and, you know, we didn't see birds. And my aunt, who was completely sentient, said, Darling, but there are no birds there. Yes, there are. And he would become very testy. 

[00:12:26] I didn't ever see potential for growth with him, even in illness. With my mother, there is still very much the possibility to do lovely things. She may not remember that they happened. And the difference between now and then is that I have a smartphone where I document everything. 

[00:12:44] So I can show her what we did. And here's you at the Metropolitan Museum of Art. Here's you at the New York Philharmonic. Here's you dining at the Italian restaurant. Here's you in Central Park. Here's you with your friends. 

[00:12:57] Because, given that sometimes she'll wake up and not know what day it is, or what time it is, or where she is, she becomes very upset that nothing is being done for her. Lately, like my uncle, she always feels that no one's feeding her.

[00:13:12] And she can have an empty plate in front of her, as he did, And say you're not feeding me and I said there right in front of you is your dish with the spoon it still has soup on it. 

[00:13:23] By the way I'm a terrific cook. And that's part of the secret of happiness for old people. That nutrition but also pleasure in food is fundamental for caregiving and giving life. 

[00:13:38] So my mother needs constant reinforcement that she is being cared for and that she's okay. My uncle didn't require that, he just needed reassurance if he saw the birds and the ashes. My mother does not quite see things yet, but she doesn't always know where she is, and that frightens her. 

[00:13:59] I know that there's a term, sundowning, which apparently refers to people later in the day becoming disoriented. That's not the case with her. It's sun rising. We're recording this in early summer. And so the day's very long and the sunrise comes early. 

[00:14:15] And my mother will now awaken, even with the blinds shut, with light pouring into her bedroom at about 5. 30 in the morning. And become very disoriented and for maybe five or six hours call out constantly, Where am I?

[00:14:30] Who am I? Who are my parents? Who was I married to? My father and I resemble each other a lot physically and she sometimes thinks that I'm him and that I have to inform her that he died many years ago. 

[00:14:43] She needs a great deal of reassurance in the morning and as a caregiver this is a very tiring thing. 

[00:14:50] I learned somewhere a long time ago, maybe with my father, but certainly my aunt and uncle, that frustrating though this is, you can't be angry at them, it's not their fault.

[00:15:01] You can be angry that these diseases exist, you can be angry that life throws you a hard one, but it's not their fault. And if you know that, and if you can repeat that, and these are people who are needy, it makes care giving, if not always a joy, a pleasure. 

[00:15:21] I realized that my mother never asked me to do this. It was, my aunt was very planful and she mapped out everything for her life and her needs. My mother never did that, and I think I learned from the model of my aunt about what to, what has to be done, but my mother never asked for any of this. 

[00:15:41] I, without going into too much detail, had major injuries early in my life and illnesses. And therefore I've always known it's never a given that we'll be here tomorrow. And my approach to life is don't waste time. 

[00:15:54] And do things that are important to you, even if they're not conventional or what other people expect you to do and expect you to be. And you have to understand yourself, you have to respond to your inner life, not in a selfish way, but not in a way that's so called self-sacrificing and you're doing yourself harm.

[00:16:16] Stephen Calabria: What was the time period that you were caring for each of these people? Like, how long did you do it initially with your aunt, your uncle, your father, and now your mother? 

[00:16:27] Fred Plotkin: So my dad, the illness and death was about eight months. My aunt and uncle, I was always very close to them. And he had children from his first marriage. They were not necessarily present. I'll leave it at that, I was very present and very loving to them and they were very loving to me. 

[00:16:49] And it was a wonderful thing to have. I don't come from a large family. And so to have those two was great and my aunt made it very clear to me that she and they did not want to go into rest homes, old age homes, care homes, if at all possible. 

[00:17:07] And would I be willing to supervisor care. And I said, of course, because other people thought just lock them away at a certain point. I said, absolutely not.

[00:17:17] If you're alive and you're able to live and function, you want to have pleasure and you want to do good things, and I did that for them, and I didn't know I'd do such a good job that they would last as long as they did. 

[00:17:33] And, when he died in April, it was sort of a shock to her because he died rather quickly. There was not a long decline. He just, he was very fit and then he just wasn't. 

[00:17:45] And she was more frail. But she absorbed the deaths, I organized the funeral, I did the eulogy.

[00:17:54] I did everything, and it was fine. And without compensation, by the way, not that I expect compensation, but I know that for many people, caregiving is a sacrifice in that often you lose your own income.

[00:18:07] I did, but I, it didn't matter to me. Someone about five years ago who I scarcely know, said something to me that stuck in my head. He said, you will never regret any of this. 

[00:18:20] And it was so interesting coming from someone I didn't know. That's the truth and it's sort of my mantra because yes, there's a huge amount of sacrifice in this and it is not easy. 

[00:18:34] And if you're dealing with someone with dementia, they may be having a very bad day and be abusive to you. Not because they want to, they just don't know what they're doing. 

[00:18:44] And so you have to not taken personally, but you respond with love. My default with everyone, practically, is love and kindness. 

[00:18:55] And that can sound very trite, but it really comes from, I learned this from the writer Jan Morris, who was my favorite writer. She had a difficult life, she had a wonderful life, but a difficult life.

[00:19:09] And I got to know her later in life, and she said, Look, if we only really, genuinely treated each other with kindness, So many things that are hard in life would be a little easier.

[00:19:19] It's not my fault and I can live with a clear conscience, and that's a very good thing. I'm doing the right thing. 

[00:19:27] Stephen Calabria: And how long has your mother's condition been the picture. 

[00:19:32] Fred Plotkin: Okay, so there were signs, the classic signs that I recognized from my uncle, even 10 years ago. Things like putting a hot plate in the refrigerator or locking the chain lock on the door so that I couldn't get in.

[00:19:49] Or when I was still out in the world working, I went to Washington DC. I used to teach at the Smithsonian every month and I called her from Washington when I arrived and she forgot completely that I had gone to Washington. I printed an itinerary. 

[00:20:03] I printed everything for her and she forgot. That was 10 or 12 years ago, but there were sort of plateaus that would be reached and then there was a little descent, but I really started noticing her 100th birthday was November of 1924 and somehow by December, it was notable.

[00:20:23] It's as if she made it to 100 manageably, and then after that, she was not able to do things that are activities of daily living, even though, frankly, she couldn't cook or prepare food for a long time, she couldn't do her billing, she couldn't remember appointments. 

[00:20:39] All the things in life. I became very fearful that she would have a fall in the shower or somewhere. Her personal hygiene never declined. She's very scrupulous about that, but her ability to do that was difficult. 

[00:20:56] And I called them friends. These were women who were not caregivers, who are not home health aides, they were women who needed a job. One of them was a stage manager in the theater, who was very organized.

[00:21:10] Another one was a licensed social worker who took a break from her career. And they were friends who would, quote, drop by. But they would drop by every day for eight hours. 

[00:21:22] And I paid them. And then, when my mother's care needs grew, I had to get someone who was a home health aide. 

[00:21:31] And she's there while you and I are talking here. But I can never leave my mother alone. And I've not, my mother has not been alone in about six years.

[00:21:42] Stephen Calabria: Now, some listeners are already thinking to themselves, this man is a saint. How did your family members' diagnoses, particularly that of your mother, alter your plans for the future?

[00:21:55] Fred Plotkin: One of the many things I learned because, as I said, I had endured injuries that had me hospitalized and in a wheelchair when I was a young man, that you can never really plan for the future. 

[00:22:07] Nonetheless, I have always done a lot of life planning early. And I decided early on to establish my own priorities. and not feel that I had to comply with what other people thought. 

[00:22:20] My mother wanted me to be a lawyer. My father, who was a wonderful musician, did not want me to go into the performing arts, as I did into opera, because it was so untenable to have a life and a career in the arts.

[00:22:36] Travel had to be central to what I did. So part of that was working in opera and working in opera companies all around the world. I learned early on to create a bucket list of things, not for the future, but for now. 

[00:22:49] To understand what is it that I want and really want to do in life. 

[00:22:55] Not to be in life, but to do in life. And I did that, and every year I made a point of doing one or two of those things and that would vacate on the list two spots to do something else. And I keep adding those things. 

[00:23:13] And one thing I learned a long time ago, because as a self employed person in the arts who also writes books and has to live by his wits, is that you can't do everything you think you want to do. 

[00:23:28] And that every achievement is a success, but everything you don't achieve is not a failure. And that is central to my life. 

[00:23:37] And I think because I had early on, disability, I knew that perhaps that would visit me again, or perhaps my life would have to come to a halt for another reason that I didn't imagine. 

[00:23:50] As it turned out, it's caregiving, which as I said was a choice for me. Only my aunt asked me to do it. No one else did. My father, I was 40 when he did that. When he got sick. And it would never occur to me not to do that. 

[00:24:05] I made my own choices. And, these were inscrutable to most people and I never cared. I didn't do this for other people. I did it for me.

[00:24:15] And, as I said, lead with love, and lead with kindness. It really does make a huge difference. And if you have formed with an Italian, a bond somehow, not just basic, you know, let's go out and have a pizza, but in Italy, if you have a friendship that goes beyond a certain point, I'm not saying it becomes a romance, but it becomes family.

[00:24:40] And they're not perfect in Italy, and there are old people who are abandoned, unfortunately, but there are many more older people who are taken care of. 

[00:24:48] I remember during the worst part of the pandemic in Italy, that two police officers in Florence went to the home of an 87 year old lady whose caregiver hadn't shown up that day, and they made her pasta. 

[00:25:02] And there's a video of them just cooking pasta and serving her. And that's all you need to know. It really is, and I was telling you before about food. Most old people are given depressing food, and sick people are given depressing food. If the food tastes good, you feel happy. 

[00:25:18] And I'm not saying eat junk food. I have written eight cookbooks, and I know a lot about nutrition, and therefore I kept my aunt and my uncle alive for a very long time, and I improved my mother's health.

[00:25:32] She was glamorously slim, but she was anemic. And she had digestive issues because she ate foods that were just about staying slim. And now, she eats incredibly well. She has a terrific appetite, she loves her food, and she's off all of her medications. 

[00:25:50] Because the food is the medicine. And I'm not saying that this works that way with everyone, but I'm a huge advocate, I proselytize about nutrition and the very old, and very old. 

[00:26:03] And it's something I plan to explore when I no longer have this responsibility for my mother.

[00:26:09] Stephen Calabria: Okay, so you're talking to an Italian, and this is an important question before we move on. But you're the expert. 

[00:26:14] Fred Plotkin: Yep. 

[00:26:14] Stephen Calabria: What do you think are the best Italian dishes, especially ones easy enough for our average listener to make at home?

[00:26:21] Fred Plotkin: Well, if people are not dealing with things like diabetes and sugar issues, pasta is the best dish in the world. And there are many ways to make it. I wrote a pasta cookbook. It was my first cookbook, but pasta has been in all my Italian cookbooks. But frankly, vegetables. 

[00:26:38] It's the Italian plate that's different because the Italian plate will have more fruit and vegetables, more antioxidants, more colors. And then you get enough protein from meat and dairy or fish and dairy. 

[00:26:51] Italians certainly eat meat and there are parts of Italy like Tuscany, like Piemonte, Rome, where they eat a lot of meat. Other parts like Liguria and, and Puglia and Sicily, Sardinia. 

[00:27:03] Well, Sardinia they eat meat, but in Sicily they eat a lot more fish. But they eat a lot of cheese. They drink a fair amount of wine, but not excessively. 

[00:27:14] But the other thing, and this will be the first line of the book that I'll ever write about nutrition and the old, is attapola non si invecchia. You don't get old at the table. That's the Italian belief.

[00:27:26] Because it's not just about the food, it's about the company. Shared food is shared experience. It's showing love, even if you're not a good cook. Because it's about being there. 

[00:27:39] And that's what caregiving is about, it's about being there. 

[00:27:42] Stephen Calabria: It's why Italians will usually, never walk and eat. It's why they are stationary when they're eating. This is something not to be done in passing, but you are meant to enjoy it. Are there any lessons you've derived from your study of Italian food that have informed your time as a caregiver? 

[00:28:04] Fred Plotkin: Materia prima, as the Italians call it, which is basically to say ingredients as close to their natural state. Certain parts of Italy, especially Rome, add a lot of salt. And that's where I diverge from the Italian point of view. 

[00:28:18] Salt in Rome represents wealth. You get your salary, salt, S A L, salary. You have salsiccia, sausage. You have a salsa. You have insalata. These are all salt related to foods.

[00:28:32] And therefore it's generous in Rome to throw a lot of salt on something. There are places that use a lot of sugar. I don't do that at all. I believe that every fruit and every vegetable has either its own salt or its own sweetness, or both, like a carrot. 

[00:28:47] And, therefore, we have to learn to get our palates back to their natural state, and eat food as intended by nature, and not corrupt it. I use some herbs. I use a few spices. But I really love the basic flavors of the food as we find it.

[00:29:03] There's one other thing I want to talk about. I, a long time ago, read Charles Darwin. And got to sail on the Beagle Straits down in Argentina, that was one of my bucket list goals. And go through where Darwin went.

[00:29:18] And I read Darwin and I embraced a lot of his thoughts and I studied the animals and I studied everything about him. And I wrote down a long time ago a quote that I brought along with me. 

[00:29:28] I don't read notes but I did bring this, that in Origin of Species, Charles Darwin tells us that the species most likely to survive are those most responsive to change.

[00:29:40] And that is so important. There's so much that we cannot control. I learned that a long time ago when I had an accident in Rome and I had bad surgery and I couldn't walk for two years. 

[00:29:52] So, you never know. In Italian, in the opera, we say fatalita, fatalita, fatalism. 

[00:29:59] You have to work for the best, assume that you cannot always have that, that there's so much in life, including caregiving and disease, that you can't control, that you have to find the moments and the times for pleasure, live for now. 

[00:30:17] Plan for the future, but don't expect to achieve it, and also ask for help. That's something I don't do as easily as I should. 

[00:30:25] Stephen Calabria: Nor do a lot of us. It sounds like, from a resilience standpoint, you've managed to carve out a part of life for both your mother and for those for whom you give care something joyful and enjoyable about it the food aspect which every day endows you with meaning purpose and joy. 

[00:30:49] Would you say that that's true?

[00:30:50] Fred Plotkin: Depends how the food comes out. But yes you're right. 

[00:30:55] Stephen Calabria: And then there is the area of classical music, particularly opera. Now you have something of an expertise in that as well? 

[00:31:03] Fred Plotkin: It's been my career. I had a Fulbright to work at La Scala. I was the performance manager of the Metropolitan Opera. I've worked in more than 40 opera companies. 

[00:31:13] I was the opera expert for the National Endowment for the Arts in the 90s. I wrote Opera 101, which is the standard textbook in America for learning opera.

[00:31:21] I teach it all over the world. I do a Friday program called Fred Plotkin on Fridays. Here's an example. When the pandemic came and when I could no longer travel, every Friday in my bedroom with my computer, I do a program in which I speak to people around the world. 

[00:31:38] And so, for that reason, resiliency is also about changing, about pivoting. But yes, opera, my favorite line in all of opera, there are two, and they're both from Verdi. 

[00:31:52] One of them is his opera Attila, where one of the characters says, avrai tu l'universo, resti l'Italia a me, which means you can keep the universe, but let Italy be mine. And if I have a tombstone, that's going to be on it. 

[00:32:06] But the other one is from his opera Erdani. Every heart harbors a mystery, and I've always learned that no matter how well we think we know people, we understand someone, we never know what they're actually going through and what may be at play that they have not even identified for themselves or articulated to me.

[00:32:29] And therefore, you have to treat people with respect and gentleness and understanding that you really may touch a nerve in the act of trying to do something good. 

[00:32:41] And we can only do so much, and if the spirit is of love and affection, even if I can't resolve their problem, they know that someone cares.

[00:32:52] Stephen Calabria: Let's talk about self care. You probably have days that you're feeling down, where so many of these problems feel intractable, they're only getting worse, especially you're now so well acquainted with end of life and human suffering. What helps get you through those days?

[00:33:10] Fred Plotkin: You have to do all you can to maintain your own health. And that's not always possible. Because sometimes you can't leave the person you're caring for to go have something seen to, especially if it's an emergency. 

[00:33:23] I recently had an insect bite. And it's something that had to be seen to right away. And I had to adjust things to make that happen. Because it's being treated right now and it seems okay. 

[00:33:35] But you just never quite know, and something small like that can turn into something very big. 

[00:33:41] Because I cook, because I don't get enough exercise could be a few pounds lighter. I'm much lighter than I used to be. I learned a long time ago that I had to lose weight, and I did. But I could still be lighter than I am.

[00:33:53] But also my main challenge as a caregiver is not getting enough rest and it's a problem because my mother is down to work day and nights. 

[00:34:03] I'm there all the time except when her homemade is there I get to come out, but I've not gone anywhere so to speak. I went to New Jersey once in the past five years and that's all the only place I've been to. 

[00:34:15] But I would love to, as someone who loves travel, I would love to explore more. Because we have been in a pandemic, I have to be very careful about socializing with people. 

[00:34:26] So part of my self care has been to avoid getting COVID, and I have. So if I have that, I can't take care of my mother. And if my mother gets COVID, that will kill her. 

[00:34:36] I had several mothers of friends of mine die of COVID, and I don't want that to be my mother's end. 

[00:34:44] She wouldn't understand it. She would suffer and part of my job as a caregiver is to make sure that she doesn't get it. So the sacrifice has been that, for now, I can't lead the kind of life that I love to lead.

[00:34:59] But as I said, my mother didn't ask me to do this. I chose to do it. That's a very important distinction. I bear in mind that man who said to me, you will never regret any of this. And I know that after the fact, I will learn whether he was right, but I will be interested to explore that. 

[00:35:15] I also know that you discover who your friends are. And that's a very telling thing. I am my mother's social director. And she gets to restaurants and museums and the New York Philharmonic.

[00:35:29] And I have found programs such as Arts and Minds at the Metropolitan Museum of Art and Lincoln Center has one of their various institutions around New York City, if you look for them, that provide entertainment and distraction and fascination for her. 

[00:35:48] And if not necessarily respite for me, I don't have to be the active caregiver for that hour. And, yes, I often physically feel it, and I realized recently that there were 12 nights out of 14 where I never got to lay down in bed at night. 

[00:36:04] I would fall asleep in a chair and mom would call and I would jump up and help. Because a real issue in our country is we don't have enough people who can be paid caregivers. 

[00:36:15] And I got my mother insurance a long time ago to be able to do that. But we can't find anyone who is qualified. And that makes life harder for everyone.

[00:36:28] And frankly, and I'm talking government policy now, in terms of who we let come to our country and do what, there are jobs for these people in this particular field. I read one study that there are 56 million unpaid caregivers in America, and I'm one of them.

[00:36:46] It means, and people can take this as they wish, I've not been able to contribute to my own Social Security funds at a crucial time in my life when I will need that, and therefore I will pay for my caregiving when I am in need of social security.

[00:37:03] Stephen Calabria: What don't most people know about end of life caregivers? 

[00:37:07] Fred Plotkin: Well, that unless there's a diagnosis, a fatal diagnosis, you don't know when it's gonna come. And you can't plan anything. I think that what people don't know is that everything is put on hold except the small things that you can plan.

[00:37:26] So that, for example, I try now to go out to a play or a concert or something of my own once or twice a week. In truth, I fall asleep at these places because I'm exhausted. 

[00:37:37] And it's frustrating because I've been to really good places that I slept entirely through. But I'm out. And, sometimes I'll just go for a walk. 

[00:37:46] Sometimes I will get on the subway with a mask and everything and go to a neighborhood I've not been to for a long time and walk through that neighborhood and treat it as if I'm in Turkey or in Uzbekistan or Ecuador or wherever I am.

[00:38:02] Because we have all that in New York City and listen to languages and sample foods and smell the smells of the food and the people and watch the interactions and then come back home. And that's my little journey and it's not the same as going to Ecuador or Uzbekistan, but I can't do that now. 

[00:38:23] And I won't disappoint myself by saying, gee, I wish I could, because I've made this choice. As I said to you, no one asked me to do it. But I could never imagine subjecting someone who's 101 and vulnerable and would die on her own to, to that. That would never occur to me.

[00:38:42] Stephen Calabria: In terms of the larger meaning and purpose for you for your time as a caregiver, what would you say have been the biggest takeaways from you from this whole experience?

[00:38:52] Fred Plotkin: In the 1980s, I was the performance manager of the Metropolitan Opera. My predecessor hired a lot of the staff and he hired a lot of gay men. And then AIDS and HIV arrived. And, most of them got sick, and most of them, except for one, died. 

[00:39:09] And the Met was very generous, I think very highly of the Met for this, in terms of caring for them well after their health insurance ran out, and I I have nothing but praise for the Met for that, but they didn't have rights in terms of housing, in terms of wills and legacies and so on.

[00:39:29] They didn't have people seeing them in hospitals. And I, early on, organized a few people at the Met who basically became a team of volunteers, myself included, to look after these people. 

[00:39:40] So, somehow, I was alerted to caregiving in my 20s and early 30s. And maybe the instinct was already there. By then I had already had one of my two big accidents. 

[00:39:52] I would have the other one after I left the Met. And so therefore I saw this then and I understood how fragile life can be and how we do depend on one another.

[00:40:05] And that social support, I believe, should be something that should be warranted in government. There are certain states in our country that do it better. And from that point forward, I've always been attuned to that.

[00:40:16] And then I think soon after that, when I turned 40, is when my father got sick. And I'm 68, so it's been 28 years of this kind of awareness, of how precious life is and how you never quite know. 

[00:40:32] But what people don't understand about caregivers is that, as what I said before, we never quite know the mystery of the heart of the next person and what they feel.

[00:40:43] So that what we have to do is offer concrete help when you can. Can I cook for you? Can I take out your laundry? Can I walk your dog? Can I come and look after your relative for a day while you can get out? 

[00:41:00] Those kind of concrete offers as opposed to let me know if you need anything. And, if I say can I walk your dog and they say no thank you, is there something else you need done that you haven't thought about. 

[00:41:13] In the case of cooking for my mother and for me, it's not about fancy cooking at all. It's about healthful, nutritious cooking. That's what I'm after. 

[00:41:21] Stephen Calabria: That was it for my questions. Was there anything else you wanted to say? 

[00:41:25] Fred Plotkin: I know that I have to find joy and pleasure in small things.

[00:41:28] Stephen Calabria: Signore Fred Plotkin, grazie mille. 

[00:41:32] Fred Plotkin: Grazie a te.

[00:41:34] 

[00:41:34] Stephen Calabria: Thanks again to Signore Plotkin for his time. His most recent book is called Italy for Food Lovers, co written with Rick Steves, and his weekly program centered on music and culture is called Fred Plotkin on Fridays.

[00:41:48] That's all for this episode of Road to Resilience. If you enjoyed it, please rate, review, and subscribe to our podcast on your favorite podcast platform. Road to Resilience is a production of the Mount Sinai Health System. 

[00:41:59] It's produced by me, Stephen Calabria, and our executive producer, Lucia Lee. From all of us here at Mount Sinai, thanks for listening, and we'll catch you next time.