(Ep 19) Caregiving for Mental Illness: SiriusXM Doctor Radio Show

On Tuesday, April 6, 2021, I joined in as a guest on one of SiriusXM’s radio programs to talk about caregiving for mental illness. DOCTOR RADIO included this segment on caregiving for mental illness, and its host Dr. Michael Aronoff interviewed me. Dr. Aronoff MD is Attending Psychiatrist on the Senior Staff of Lenox Hill Hospital and Clinical Professor of Psychiatry at NYU Medical Center. He’s served the American Psychiatric Association for over 20 years and has been on New York Magazine and Castle Connolly Guide’s “Best Doctors” list. Dr. Aronoff’s Psychiatry Show on SiriusXM’s DOCTOR RADIO is live on Tuesdays at noon ET.

Here’s the transcript below about caregiving for mental illness.

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Caregiving for Mental Illness segment transcript:

• Dr. Michael Aronoff: I want to welcome in this segment [about caregiving for mental illness], Paolina Milana, a former journalist turned marketing PR and media professional. She’s the author of several books and her latest is entitled COMMITTED: A Memoir of Madness in the Family. Thank you so much for joining me. Paolina Milana: Thank you, Michael, for having me. I’m honored. Dr. Michael Aronoff: Well, we’re honored to have you, and we are particularly interested in the valuable experience that you’ve had that will lead us to further explore the issues about stigma that’s associated with mental disorder and reaching out and how to deal with the anxieties that we can all recognize, but maybe a little bit more heightened in those kinds of situations. Your new book COMMITTED is the sequel to your book, THE S WORD. Why is it important to confront your or our past? The “S” by the way is for schizophrenia.
• Paolina Milana: So the first book told the story of me being raised by a mom who went for several years undiagnosed as a paranoid schizophrenic. It was pretty frightening for a child to grow up with that. And to have the medical professionals not really know what was going on. My mother had a couple of exploratory brain surgeries, because at that time it wasn’t really known.
• Dr. Michael Aronoff: They were looking for the devil.
• Paolina Milana: Yeah, yeah, yeah, exactly. Right. And they wanted to cut it out, right?
• Dr. Michael Aronoff: Yeah. Oh my God.
• Paolina Milana: On top of that, we were Sicilian, we are Sicilian, and we had kind of an unwritten code of silence. What happened in the family stayed in the family. So it [caregiving for mental illness] wasn’t, you know, not only did society not embrace people kind of coming out of the closet and saying that they had mental illness in the family, but our own culture didn’t really allow that or encourage that. That’s the first book. The second book COMMITTED is when I get to the point where life at home is too much for me. And I go away for a year to college. And I want to pretend that I’m normal. I want to pretend that nothing’s going on at home and letters continue to come to my university, telling me all of the madness that’s still going on at home. So no matter how much I try to escape it, I can’t. Then I go back home. My father unexpectedly dies. That leaves me as the primary caregiver to my mother who is still raging with her schizophrenia. And two years after my dad dies, my little sister has a major psychotic break. And she too is diagnosed with paranoid schizophrenia. So then I am left. I like to say that insanity took root in my family tree, and I was tasked with tending his garden. And in doing that, I nearly lost myself.
• Dr. Michael Aronoff (04:23): I can imagine, I can imagine the stress was enormous. Let me just mention for the audience, just a brief overview of what schizophrenia involves. It’s a dysfunction of the brain. It leads to the following kinds of things, hallucinations and delusions that is seeing things that aren’t there, that other people don’t see, delusions, that is fixed beliefs, which is where the paranoia can come in. Disorganized speech, grossly disorganized or catatonic that is frozen behavior, negative symptoms. It lasts for a long time. It can have some emotional, affective overlay to it that is depression or even a manic kind of possibility to it. So you came to be a caretaker for your mom and your sister at that point. I can’t imagine what the stress must have been like for you. How did you handle it?
• Paolina Milana (05:26): Not very well. You know, I’m a caregiver, I’m a strong person from the outside, you know, I was, at that time, I was working for a daily newspaper, writing stories, no one knew from the outside, what was going on and I wanted to keep it that way. So I kept all of those secrets. But in doing that, I was suffocating. I was eating myself to death. I had ballooned to almost 300 pounds. I, you know, I, I was very successful professionally, but personally I was falling apart, and I had decided at one point that my only out was to take myself out, along with my mother and my sister. I had decided just to do us all in, do the world a favor, quote unquote. And by the grace of God, I, on the very night that I was going to do it, someone took me because they noticed that I wasn’t myself, and they took me to a woman who saved my life, a woman who was my therapist for over 10 years, she’s a licensed clinical professional counselor. And she said to me, you know, Margie, that was the woman who took me there, Margie says that you’re struggling, that you’re kind of dealing with some things, tell me about it. And my response to her was it’s nothing nothing’s going on. And she was, she was smart enough to say, okay, tell me about nothing. And that, that opened the world for me. And I, I just spilled everything to her in like 10 seconds. I remember seeing her jaw kind of drop and that beautiful, beautiful woman saw me for months for free because she saw something in me.
• Dr. Michael Aronoff (07:39): Paolina, my jaw didn’t drop. I’m just getting chills from hearing this story and what you’ve been through, it’s just remarkable. You are listening to, Paolina Milana. She is the author of several books, her latest being COMMITTED: A Memoir of Madness in the Family. She’s a former journalist and a current media professional. Our number is 877-698-3627 – 877-NYU-DOCS And if this is ringing a bell for any of you, give us a call. If you have a question or you want to talk with Paolina. And I also want to mention the suicide prevention hotline, which is +1 800-273-8255. We are talking about, well, the struggles and the stresses of dealing with mental illness in the family, but we’re talking about the, how one handles this, Paolina, you were a first-generation American, your parents came over from Sicily. That must have been an additional burden.
• Paolina Milana (08:55): Icing on the cake. You know what? I will say this, you know, being first generation, from a family of immigrants, English not being our first language, not being my first language. I became, I believe though, that, that like, okay, so I want to be clear here because yes, it was super chaotic. Yes, it was complete. Let’s just call it Cray, Cray growing up. But by the same token, there were really great moments. I mean, being Sicilian, you know, is about food and love and laughter you know, my father at any time could have just left and he didn’t, he stayed despite, you know, my mom used to chase knives and baseball bats under the bed and threatened screaming all night long that she was going to kill my father. She was going to blow us up. And then the next morning, despite not having slept, we all had to go to school. But I think that my Sicilian culture really kind of just was infused with love. And it’s a challenging thing to talk about because you can both hate a person who has a mental illness and love them at the same time. When caring for mental illness, THAT is a challenge and yes, the emotions. Yeah.
• Dr. Michael Aronoff (10:30): Paolina, I digress for a moment. My wife and I spent some time in Sicily and it ruined our tastes for Italian food anywhere else, because it’s so wonderful. It’s so wonderful there. Uh, we were biking and hiking in Sicily and it’s just wonderful, but I want to go back to your story. What would you say to listeners who are hiding their story or aren’t being as open as they could be about their struggles?
• Paolina Milana (11:01): Yeah. You know what, um, I’m gonna, I’m gonna actually quote, uh, or, or actually share it. One of my favorite quotes it’s um, from DH Lawrence, he’s the author of lady Chatterley’s lover. And he said, “This is the very worst wickedness that we refuse to acknowledge the passionate evil that is in us. This makes us secret and rotten.” And so I quote that because the problem is hiding it. The problem is staying silent, being shamed. That is the challenge versus because, because inherently by keeping it all silent and not telling your story, not reaching out for help that in and of itself is making you believe that something is wrong. Something is not normal. And while granted in a way it’s not, but to actually share, it would make it something that’s much more mainstream because there are more people who are suffering from a mental illness than not. It’s just that we there’s that stigma to share it. The more that we would share it, the more that I think people would feel comfortable and they would get the help that they need.
• Dr. Michael Aronoff (12:25): There’s one other effect of not sharing it too. It makes you blind because you do, if you’re constantly denying something, you don’t recognize what’s going on around you and you become in effect paralyzed.
• Paolina Milana (12:40): Yep. Exactly. Absolutely. You it’s. It is. It is the silence that suffocates, I firmly believe that because the minute that I started to write down my story and know this, you know, for anyone listening, who, who is dealing with something like this, who has a story, we all have stories. I want you to know that my first book, the S word took me 10 years to write. And the reason it took me that long is because I was afraid. And in the very beginning, it started out as a book about, you know, pointing fingers at every adult who did me wrong, you know, sharing how, you know, I wish I could’ve had this. I wish I could’ve had that. By the end of the 10 years, it became a book about forgiveness and redemption. And I saw the world in an entirely different way. I’ll also say that that book, once it was done before I got a publisher, I put it in a drawer. That’s how afraid I was. And the only reason that I took it out and I actually got it published was because I encountered a clerk, a grocery store clerk who I knew she was maybe 16, and I went to do my groceries. Something happened in the store. She was completely shocked. And she said to me, I said to her, gosh, what, what did you do? And her response to me was Paolina, nobody tells you what to do. Nobody shares these kinds of stories. Right? At that moment, I realized, I wasn’t just writing this story to heal myself. I was putting this book out because other people needed it. And that’s what I want everyone to really hear your story matters. It matters not just for you, but for others.
• Dr. Michael Aronoff: Okay. We have a call from Cindy who was reaching out from Texas, Cindy you’re on the air.  Hi. Um, I have, uh, a younger sister who’s 47, who is a paranoid schizophrenic, OCD, compulsive order bipolar. Sometimes I called her a kind of like a bizarre psychosis. So, um, her grandfather, her paternal grandfather, um, had schizophrenia. Where I live, um, I have a great, some of the police department, super nice, Texas panhandle mental health is really great. That’s been kind of help oversee her for like 25 years. I moved here a little over three years ago to kind of be like a project manager, housing and all that. So, um, but really great that we have some good people to help. But the thing that I get conflicting information on all the time, how to handle things with her whenever she has these delusions, you know, I mean, she’s worth a trillion dollars. She’s in Venice, and Facebook, she invented the internet, I mean, all the amazing, grandiose. Also her food is always painted, you know, has a and D ointment baby or one thing or another. So her food, I can only find her food for a couple of days. Cause she’ll throw everything out. How do you address that?
• Paolina Milana (16:18): You know, Cindy, I think, I think we’ve been living parallel lives [caregiving for mental illness] because my younger sister, she too had these kind of delusions of grandeur. I went to see her. She was committed at one point and I went through the security and saw her and she handed me a book and she said, here, I wrote this. And when I looked down at the book, it was the Holy Bible. And my response to her, my response to her was “catchy title”… I tell you that because yeah. So, okay. A sense of humor and you know what, it really, really helps when caregiving for mental illness. You’ve got to actually take care of yourself because yes. And because the more that you don’t, the more, you’re not in a position to help her or to objectively kind of respond. I would say that when it comes to you having good people around you, that is awesome. Rely on them. YOU ask for help in being the caregiver. And when your sister responds in these ways or, or make comments like this, you do have, you’ve got three choices. You can not respond at all, ignore and go about your own way. Right. You can respond by telling them you’re wrong and it’s not this. Then you got, you’ve got this problem, et cetera. That is a decision that you have to make my brother, um, tried that once and it turned out devastating – doesn’t work – or you respond in a way that lets them know you heard them and then you move on. Right? So my little comment of “catchy title” was, “Hey, I heard ya now we’re gonna move on to something else.” So those are kind of, um, kind of my thoughts on what you might want to try when caregiving for mental illness. Does it help?
• Dr. Michael Aronoff (18:33): I’m going to answer that because we’re running short. Not only did it help, but you know, because it’s very useful, but it’s also very moving.
• Dr. Michael Aronoff (19:33): Paolina, in a few moments, quickly in a minute. How’s your relationship today with your mother, your sister?
• Paolina Milana (20:09): So, um, my mother and my sister both died. My mother from old age and my sister died, it was, a freak kind of thing when she was in an institution. But, my relationship right now with myself is phenomenal. My relationship with my husband. I never thought I’d get married. And yet here I am married to an incredible guy. My relationship, I think overall has with myself, has allowed me to help others. I’m out of court appointed special advocate for kids in the foster care system, connecting with the kids who deal with this kind of stuff too. So again, when caregiving for mental illness, take care of yourself first, put your own oxygen mask on first because it allows you to help others.
• Dr. Michael Aronoff (21:00): Yeah, Paulina. We’re going to have to leave it at that, but we’re not going to leave it at that because I want to have you back to hear more of your story. You’re phenomenal. And you come from a great place, as far as I’m concerned. Uh, we’ve been listening to Paolina Milana. She is the author of COMMITTED: A Memoir of Madness in the Family. Paolina, Thank you so much for joining me. We’ll have you back in the near future. Okay.
• Paolina Milana (21:26): I would love to talk more about caregiving for mental illness. I hope this has helped make caring for mental illness easier. Thank you so much and thank you for all your listeners.

 

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Caregiving for Mental Illness segment transcript:

• Dr. Michael Aronoff: I want to welcome in this segment [about caregiving for mental illness], Paolina Milana, a former journalist turned marketing PR and media professional. She’s the author of several books and her latest is entitled COMMITTED: A Memoir of Madness in the Family. Thank you so much for joining me. Paolina Milana: Thank you, Michael, for having me. I’m honored. Dr. Michael Aronoff: Well, we’re honored to have you, and we are particularly interested in the valuable experience that you’ve had that will lead us to further explore the issues about stigma that’s associated with mental disorder and reaching out and how to deal with the anxieties that we can all recognize, but maybe a little bit more heightened in those kinds of situations. Your new book COMMITTED is the sequel to your book, THE S WORD. Why is it important to confront your or our past? The “S” by the way is for schizophrenia.
• Paolina Milana: So the first book told the story of me being raised by a mom who went for several years undiagnosed as a paranoid schizophrenic. It was pretty frightening for a child to grow up with that. And to have the medical professionals not really know what was going on. My mother had a couple of exploratory brain surgeries, because at that time it wasn’t really known.
• Dr. Michael Aronoff: They were looking for the devil.
• Paolina Milana: Yeah, yeah, yeah, exactly. Right. And they wanted to cut it out, right?
• Dr. Michael Aronoff: Yeah. Oh my God.
• Paolina Milana: On top of that, we were Sicilian, we are Sicilian, and we had kind of an unwritten code of silence. What happened in the family stayed in the family. So it [caregiving for mental illness] wasn’t, you know, not only did society not embrace people kind of coming out of the closet and saying that they had mental illness in the family, but our own culture didn’t really allow that or encourage that. That’s the first book. The second book COMMITTED is when I get to the point where life at home is too much for me. And I go away for a year to college. And I want to pretend that I’m normal. I want to pretend that nothing’s going on at home and letters continue to come to my university, telling me all of the madness that’s still going on at home. So no matter how much I try to escape it, I can’t. Then I go back home. My father unexpectedly dies. That leaves me as the primary caregiver to my mother who is still raging with her schizophrenia. And two years after my dad dies, my little sister has a major psychotic break. And she too is diagnosed with paranoid schizophrenia. So then I am left. I like to say that insanity took root in my family tree, and I was tasked with tending his garden. And in doing that, I nearly lost myself.
• Dr. Michael Aronoff (04:23): I can imagine, I can imagine the stress was enormous. Let me just mention for the audience, just a brief overview of what schizophrenia involves. It’s a dysfunction of the brain. It leads to the following kinds of things, hallucinations and delusions that is seeing things that aren’t there, that other people don’t see, delusions, that is fixed beliefs, which is where the paranoia can come in. Disorganized speech, grossly disorganized or catatonic that is frozen behavior, negative symptoms. It lasts for a long time. It can have some emotional, affective overlay to it that is depression or even a manic kind of possibility to it. So you came to be a caretaker for your mom and your sister at that point. I can’t imagine what the stress must have been like for you. How did you handle it?
• Paolina Milana (05:26): Not very well. You know, I’m a caregiver, I’m a strong person from the outside, you know, I was, at that time, I was working for a daily newspaper, writing stories, no one knew from the outside, what was going on and I wanted to keep it that way. So I kept all of those secrets. But in doing that, I was suffocating. I was eating myself to death. I had ballooned to almost 300 pounds. I, you know, I, I was very successful professionally, but personally I was falling apart, and I had decided at one point that my only out was to take myself out, along with my mother and my sister. I had decided just to do us all in, do the world a favor, quote unquote. And by the grace of God, I, on the very night that I was going to do it, someone took me because they noticed that I wasn’t myself, and they took me to a woman who saved my life, a woman who was my therapist for over 10 years, she’s a licensed clinical professional counselor. And she said to me, you know, Margie, that was the woman who took me there, Margie says that you’re struggling, that you’re kind of dealing with some things, tell me about it. And my response to her was it’s nothing nothing’s going on. And she was, she was smart enough to say, okay, tell me about nothing. And that, that opened the world for me. And I, I just spilled everything to her in like 10 seconds. I remember seeing her jaw kind of drop and that beautiful, beautiful woman saw me for months for free because she saw something in me.
• Dr. Michael Aronoff (07:39): Paolina, my jaw didn’t drop. I’m just getting chills from hearing this story and what you’ve been through, it’s just remarkable. You are listening to, Paolina Milana. She is the author of several books, her latest being COMMITTED: A Memoir of Madness in the Family. She’s a former journalist and a current media professional. Our number is 877-698-3627 – 877-NYU-DOCS And if this is ringing a bell for any of you, give us a call. If you have a question or you want to talk with Paolina. And I also want to mention the suicide prevention hotline, which is +1 800-273-8255. We are talking about, well, the struggles and the stresses of dealing with mental illness in the family, but we’re talking about the, how one handles this, Paolina, you were a first-generation American, your parents came over from Sicily. That must have been an additional burden.
• Paolina Milana (08:55): Icing on the cake. You know what? I will say this, you know, being first generation, from a family of immigrants, English not being our first language, not being my first language. I became, I believe though, that, that like, okay, so I want to be clear here because yes, it was super chaotic. Yes, it was complete. Let’s just call it Cray, Cray growing up. But by the same token, there were really great moments. I mean, being Sicilian, you know, is about food and love and laughter you know, my father at any time could have just left and he didn’t, he stayed despite, you know, my mom used to chase knives and baseball bats under the bed and threatened screaming all night long that she was going to kill my father. She was going to blow us up. And then the next morning, despite not having slept, we all had to go to school. But I think that my Sicilian culture really kind of just was infused with love. And it’s a challenging thing to talk about because you can both hate a person who has a mental illness and love them at the same time. When caring for mental illness, THAT is a challenge and yes, the emotions. Yeah.
• Dr. Michael Aronoff (10:30): Paolina, I digress for a moment. My wife and I spent some time in Sicily and it ruined our tastes for Italian food anywhere else, because it’s so wonderful. It’s so wonderful there. Uh, we were biking and hiking in Sicily and it’s just wonderful, but I want to go back to your story. What would you say to listeners who are hiding their story or aren’t being as open as they could be about their struggles?
• Paolina Milana (11:01): Yeah. You know what, um, I’m gonna, I’m gonna actually quote, uh, or, or actually share it. One of my favorite quotes it’s um, from DH Lawrence, he’s the author of lady Chatterley’s lover. And he said, “This is the very worst wickedness that we refuse to acknowledge the passionate evil that is in us. This makes us secret and rotten.” And so I quote that because the problem is hiding it. The problem is staying silent, being shamed. That is the challenge versus because, because inherently by keeping it all silent and not telling your story, not reaching out for help that in and of itself is making you believe that something is wrong. Something is not normal. And while granted in a way it’s not, but to actually share, it would make it something that’s much more mainstream because there are more people who are suffering from a mental illness than not. It’s just that we there’s that stigma to share it. The more that we would share it, the more that I think people would feel comfortable and they would get the help that they need.
• Dr. Michael Aronoff (12:25): There’s one other effect of not sharing it too. It makes you blind because you do, if you’re constantly denying something, you don’t recognize what’s going on around you and you become in effect paralyzed.
• Paolina Milana (12:40): Yep. Exactly. Absolutely. You it’s. It is. It is the silence that suffocates, I firmly believe that because the minute that I started to write down my story and know this, you know, for anyone listening, who, who is dealing with something like this, who has a story, we all have stories. I want you to know that my first book, the S word took me 10 years to write. And the reason it took me that long is because I was afraid. And in the very beginning, it started out as a book about, you know, pointing fingers at every adult who did me wrong, you know, sharing how, you know, I wish I could’ve had this. I wish I could’ve had that. By the end of the 10 years, it became a book about forgiveness and redemption. And I saw the world in an entirely different way. I’ll also say that that book, once it was done before I got a publisher, I put it in a drawer. That’s how afraid I was. And the only reason that I took it out and I actually got it published was because I encountered a clerk, a grocery store clerk who I knew she was maybe 16, and I went to do my groceries. Something happened in the store. She was completely shocked. And she said to me, I said to her, gosh, what, what did you do? And her response to me was Paolina, nobody tells you what to do. Nobody shares these kinds of stories. Right? At that moment, I realized, I wasn’t just writing this story to heal myself. I was putting this book out because other people needed it. And that’s what I want everyone to really hear your story matters. It matters not just for you, but for others.
• Dr. Michael Aronoff: Okay. We have a call from Cindy who was reaching out from Texas, Cindy you’re on the air.  Hi. Um, I have, uh, a younger sister who’s 47, who is a paranoid schizophrenic, OCD, compulsive order bipolar. Sometimes I called her a kind of like a bizarre psychosis. So, um, her grandfather, her paternal grandfather, um, had schizophrenia. Where I live, um, I have a great, some of the police department, super nice, Texas panhandle mental health is really great. That’s been kind of help oversee her for like 25 years. I moved here a little over three years ago to kind of be like a project manager, housing and all that. So, um, but really great that we have some good people to help. But the thing that I get conflicting information on all the time, how to handle things with her whenever she has these delusions, you know, I mean, she’s worth a trillion dollars. She’s in Venice, and Facebook, she invented the internet, I mean, all the amazing, grandiose. Also her food is always painted, you know, has a and D ointment baby or one thing or another. So her food, I can only find her food for a couple of days. Cause she’ll throw everything out. How do you address that?
• Paolina Milana (16:18): You know, Cindy, I think, I think we’ve been living parallel lives [caregiving for mental illness] because my younger sister, she too had these kind of delusions of grandeur. I went to see her. She was committed at one point and I went through the security and saw her and she handed me a book and she said, here, I wrote this. And when I looked down at the book, it was the Holy Bible. And my response to her, my response to her was “catchy title”… I tell you that because yeah. So, okay. A sense of humor and you know what, it really, really helps when caregiving for mental illness. You’ve got to actually take care of yourself because yes. And because the more that you don’t, the more, you’re not in a position to help her or to objectively kind of respond. I would say that when it comes to you having good people around you, that is awesome. Rely on them. YOU ask for help in being the caregiver. And when your sister responds in these ways or, or make comments like this, you do have, you’ve got three choices. You can not respond at all, ignore and go about your own way. Right. You can respond by telling them you’re wrong and it’s not this. Then you got, you’ve got this problem, et cetera. That is a decision that you have to make my brother, um, tried that once and it turned out devastating – doesn’t work – or you respond in a way that lets them know you heard them and then you move on. Right? So my little comment of “catchy title” was, “Hey, I heard ya now we’re gonna move on to something else.” So those are kind of, um, kind of my thoughts on what you might want to try when caregiving for mental illness. Does it help?
• Dr. Michael Aronoff (18:33): I’m going to answer that because we’re running short. Not only did it help, but you know, because it’s very useful, but it’s also very moving.
• Dr. Michael Aronoff (19:33): Paolina, in a few moments, quickly in a minute. How’s your relationship today with your mother, your sister?
• Paolina Milana (20:09): So, um, my mother and my sister both died. My mother from old age and my sister died, it was, a freak kind of thing when she was in an institution. But, my relationship right now with myself is phenomenal. My relationship with my husband. I never thought I’d get married. And yet here I am married to an incredible guy. My relationship, I think overall has with myself, has allowed me to help others. I’m out of court appointed special advocate for kids in the foster care system, connecting with the kids who deal with this kind of stuff too. So again, when caregiving for mental illness, take care of yourself first, put your own oxygen mask on first because it allows you to help others.
• Dr. Michael Aronoff (21:00): Yeah, Paulina. We’re going to have to leave it at that, but we’re not going to leave it at that because I want to have you back to hear more of your story. You’re phenomenal. And you come from a great place, as far as I’m concerned. Uh, we’ve been listening to Paolina Milana. She is the author of COMMITTED: A Memoir of Madness in the Family. Paolina, Thank you so much for joining me. We’ll have you back in the near future. Okay.
• Paolina Milana (21:26): I would love to talk more about caregiving for mental illness. I hope this has helped make caring for mental illness easier. Thank you so much and thank you for all your listeners.

 

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