Captivate Podcast: Mark Steven Porro on Resilience, Regret, and the Realities of Caregiving | EP037

All right, welcome to today's conversation with Mark Steven Porro, the author of a cup of tea on the commode, my multitasking Adventures of Caring for Mom and how I survived to tell the tale. Now, I'm a jersey transplant, as some of you know, but Mark is the real deal. He's a jersey guy exit 163 and he's living a cool life in France now, though, so maybe we'll get to some of the aftermath as well as we go about our interview today in his book, Mark takes us on a humorous, heartfelt and brutally honest ride through the world of family caregiving. Mark, welcome to the show, and thank you for sharing this part of your life with us.

Mark Steven Porro: It's my pleasure, and it's good to be back in Jersey. It's been a few years. So this will be fun. All

right, looking forward to it now, one of the things I loved about your book is how you cared about the reader. So in a way, you you took it upon yourself to find the humor inside the all the madness and the tears of the book. And one of the places I resonated to a lot was finding out those family secrets about your family, unfortunately, after it's too late to talk to them about them, but that incident with your dad and the rosary beads where you figured out how he repaired them, could you start with that? So we start on a humorous note. Yeah, well,

Mark Steven Porro: my dad was a strict Catholic. In fact, it was funny. So Well, not the 20 I only had eight days with my dad. He passed night 14 years before this incident with my mother, which is what the book's about. And when he did pass he he was kind of a handy guy, not, not as, let's say precise as as, let's say I am, with certain things, but, but he went to church at 13, he started going every day to 630 mass for the rest of his life, until, I think, a few weeks before he passed, and he said that was one of his biggest regrets, that he couldn't go to church and he couldn't pray on his knees. And I said, Dad, you don't need to be on your knees. You know, God's hearing you. Please don't worry about that. So when he passed, he had six children. The first five all went to parochial school for some time. Some people went all the way through eighth grade. My brother and I were the last in, I guess, Mount Carmel, and we got out. I got I called it out after third grade, and my brother of fifth grade, but we all had, you know, the church and the Rosary and all the prayers pretty much tattooed on our brains. But when my dad passed, my sister lived about an hour and a half away, and she was the only one not present, and I would not let the funeral home take dad away without Carol having her chance to say goodbye. And there's kind of a funny thing, but Carol was very emotional. I said, Please, you do not want to face her if she misses this opportunity. And so while we waited for about an hour and a half. We surrounded my dad and we recited the rosary. Which would we thought would make our strict Catholic father happy? Now at this point, the three girls were all born again Christian, so they kind of left the Catholic Church. I was probably lapsed Catholic. One brother was still somewhat and then another brother, I think, was still going to mass. And so we tried to do the rosary. And luckily, my oldest sister, who was in, I guess, the parochial school the longest, let us and the rest of us stumbled through and because, you know, the prayers are fairly easy, and we've been reciting these all our whole child. Anyway, it was difficult to get through them. And my brother counted the prayers on the Rosary as we went through them. And Laurel luckily led us through. And then he gets to one of the beads, and it thought it felt really weird, and and then he got to another one that he felt was a little weird, so he looked down and the beads were replaced by drops of hot glue. And that was my dad hot glue. And duct tape were his go tos for almost anything. And so he actually repaired his rosary with drops of hot glue. And we just once, Michael told us, in the middle of us trying to pay tribute to dad on his way to heaven, we just started cracking up and just said, this was a perfect moment. It was funny and perfect, and just it was Dad, and so hopefully he forgave us for stumbling through. All these, these prayers. But I think he had a pretty good send off.

Yeah, that sounds, sounds terrific. I could just just picture it, because in those last moments of someone, or the aftermath, we often turn for something solemn, and sure enough, somebody often breaks the deal there, or we discover something that is just too funny. We have, we have to have a moment. So it really helps to remind us of all the parts of humanity, and not just the the ending, which is often, often a sad thing. Now, I got a little bit ahead there. That's an ending I'm talking about. But I want to go back to the beginning of your book, which begins with the call a definite stage of caregiving. So many of us receive the call out of the blue. We don't we don't expect it, and it puts the family into catastrophe mode. Sometimes, if you could go back to the moment before the call came, what would you tell yourself about the caregiving journey you were about to begin.

Mark Steven Porro: Wow, that's interesting. You know, I've been asked a similar question about, what advice would I give to, let's say 10 year old mark, and you know what I would say, don't change a thing, because if I made any other decisions other than I did, I wouldn't have been in, let's say, this position to take care of my mom. I was able to drop almost everything I did have a at that point, a snack food business in LA, but that was slowing up a little bit. We just recently lost our national distribution and when I got the call, it was like, mom's more important. I can keep this thing alive if I can get back to LA every few months, and that's what I did. But as far as the caregiving, when we got the call, all six kids came home because we were on death watch and and hospice was called, and she was all meds and food were cut off, and she The doctor said she's transitioning, so let her go. And I didn't really like like that response, but my younger sister and I hung out with hospice and asked them to teach us how to care for our mother, and they were very generous, and we wanted to be hands on. As long as mom wanted to stay around, we wanted to be the ones caring for her as much as we could. And so we learned a lot of tips and tricks from hospice, and I'm just very thankful for them being so generous, and also probably relieved some of their pressure on them. And and it was great that we were, we were willing to do that, and and that we did that. And I think after a while, after a few weeks, Mom snapped out of it. And I think I have a chapter in the book called the silent scream, and I think it was a cry for help. She wanted love back into her life, and certainly back into her home. She was living in the home we all grew up in, and she was not getting along with people who were overseeing the household duties and stuff. They weren't caregivers, but they were living in the house and supposed to keep her company and cook for her and do the shopping and stuff like that. And there was a lot of tension between the two parties. And mom hit it pretty well, and and they hit it well because they had, they had a pretty good deal, and so that caused some tension in the family, because some people, my brother, who hired them, still defended them and but once I came home, I was I called it on the front lines, and I got to see exactly what was going on, and it was not happy about any be it. So that was kind of like the catalyst to me starting to think about, I need to step up and play a bigger role in mom's care.

Yeah, that's a very powerful moment. Some people become the caregiver by default because no one else wants to do it, but when the family is all interested, but perhaps having dueling perceptions of what's the best thing, it can become difficult, but it sounds like your family figured out a solution, at least, to to work through those problems, so that you could all heard

Mark Steven Porro: a lot of horror stories. I was very lucky. I happened to be the tallest child. I'm the fifth, so I'm not sure if that had something to do with it, but I was willing to do it, and my siblings luckily trusted me, and my mom certainly trusted me. I had a really good relationship with both of my folks and and so the caregiving thing seemed to be to me, somewhat natural. I had to learn new things. Luckily, hospice taught me some good things, and I did some research on my own. But it's it's the right thing to do. You know, you honor. Your father and mother, and, you know, we grew up with that, and I grew up in a lovely household that had led by example and showed us how to care for other people and each other and stuff like that. And it wasn't perfect, but we learned to do the right thing, and this was definitely the right thing to do. Definitely

a great life lesson, and speaks so much about the way your family operated, even before the caregiving situation came up, which is often a precondition to how it's going to go. Can you talk a bit about your mom's condition? What What were, what was the the leading edge of that, that was the thing you had to make the most adjustment to.

Yeah, there's a lot of resilience behind all that. But I think sometimes, as we age that loneliness becomes a real factor in in any depressed, depressed feelings we might be having and not being around your family and wondering why you're there is a pretty powerful thought. Now there's a moment in the book when, after all the caregiving that you gave, your mother, she asks, and this is a familiar question for many family caregivers, I think now, what is it I call you? And that's such a deeply human moment. Was that a kind of turning point for you and your understanding of what the caregiving was about?

Mark Steven Porro: Well, I again, I think both of my parents were pretty funny people, and luckily, they passed that on to their kids. So I took it more humorous tone. I didn't take it personally, and then I wrote the chapter about about it. So out of the six children at that point, several months into doing the 24/7 care, and apparently I'm the only one whose name she couldn't remember so and again, she had a wicked sense of humor, so I thought she was. It first joking. You know, every morning I would greet her and then usually give her a cup of juice. And so this one morning, I bring her juice, and she says, Well, what is it? I call you. And I said, You're kidding, right? She said, No. And I said, name your children. And she says, Laurel, Carroll, Michael, David, DC. And I said, end stumped. And I said, Mark. And she goes, Oh, Mark, Mark with a K. And I said, Yes, Mark with the K, you named me. And then she and then I said, Oh, and I'm your favorite son. And she says, but I don't have favorites. And I said, Well, you have a favorite to forget. And so instead of really taking that to heart and or personally, I wrote my name in big block letters and taped it to the ceiling for visual aid. And so when I would come in the morning, she'd be laying in bed, and I'd say, Good morning, she'd say good morning, and then her eyes would shoot up to the ceiling for help, and then she'd say mark. And she was very happy with that. So after a few weeks, she got to know who I was, but that was just part of getting Oh, she suffered from a little bit of dementia. She had some very interesting visions early on, and we had some lovely discussions throughout. It was a three and a half year journey, is what I chronicle in the book. And and during those times, I wrote all this stuff down because I was privy to some really special moments and some very funny moments that I didn't want my siblings to miss out on. So that was the the impetus of doing all the recording. And and then I shot videos and a lot of photographs, but mostly wrote down these conversations because some of them were just hysterical.

So very brave to recognize those things and and record them, because I think that's what people miss the most, the last moments. What was going on, what you know, I couldn't be there all the time. What did I miss now, in you had mentioned in this conversation a little bit ago that the family who was staying to cook and be there for your mom, but not necessarily to be the caregivers, was not the right family to have chosen. But later on, you do find someone, I think her name is Marina, who became the rock of the family. It's, I think you said she brought peace and competence, or I'm summarizing a little bit and even humor to this very difficult time in your family's life. So for listeners who are feeling overwhelmed or burned out, and that's a common complaint of caregivers, how do you recommend they go about finding their Marina?

Mark Steven Porro: Boy, well, that was, that was, I would say, a gift, and that came out of my mom, almost outliving me the stress of I would have to relate it to. The doctors couldn't really figure it out, but I had to go through three major surgeries, and the first one, they said, if I waited a little bit longer, I probably would have been a goner. So that was interesting. So after I recovered from those, I could no longer do the heavy lifting. At that point, I carried mom everywhere. I mean, we had a wheelchair, but when we'd go out, I would call it gallivanting, and carry her to the car and carry her out of the car and then put in the wheelchair and all. So I couldn't do that heavy lifting anymore. And fortunately, while I was in the hospital, my brother had a client who he hired Marina for to do caregiving for her. She passed. So the timing was perfect. And I say it's a really interesting phenomena, whether it's serendipity or when you make a certain decision and it's the correct decision, it seems like the universe all comes together to support it, and making it easy for me to make the decision and come and care for my mom was one of those incidents. And Marina coming into our life at that point was great, and so I was still there like a supervisor role. And then Marina was smart. She took a Sunday off every week, and so I was back on duty for full duty. And maybe at that point I could do some lifting, but she she was great and very unique, because I didn't take over the 24/7 caregiving until I, my brother and I interviewed new people to do this, and was not successful. It's very difficult to find somebody who you trust and is certainly competent and who's, you know, because we had some people who were just insane and other people who were more needy than my mother was. You know, they needed the emotional support more than my mother needed the, you know, personal care and. And so Marina was unique, and she was part of a group of a lot of, I think they were Central American caregivers that were fantastic at the job. But we were lucky to have her. And then, after mom passed, my brother, my brother's mother in law, had Alzheimer's, and then Marina went to take care of Kay for a number of years. And so, yeah, she was great. And I don't know if she didn't speak perfect English, and I don't know if she understood me all the time, but we got along great because she had a good sense of humor, and she thought I was pretty funny. And so of course, I'm going to love anybody who thinks that. And so we got along pretty well, and she was tough. I was very strict, and I had a very high bar. So all my siblings were worried about how I was going to get along with Marina. So I watched her for a while, and there were some things I would have changed. And I did make some suggestions at some point, and she would take, you know, I said, when I put my two cents and she took only one, and I said, Well, that's not a great way to start, but I saw how dedicated she was, and my mom loved her and and so I yielded and said, you know, she knows what she's doing, and we got a lot. We were a great

team. That's fantastic. I know sometimes people don't recognize that the stress is creeping up on them and that they do need help. And in your book, you mentioned how it almost took you out before your mother the stress of the situation. So there was a passage that really affected me. You said, no one is immune to the physical and emotional stress of 24/7 caregiving, not even those in denial, like me and the irony of it all, she almost outlived me. And I imagine many caregivers will be aligned with that statement, because they just don't see it happening. So can you talk about how you recognize that the toll of caregiving was creeping up on you?

Mark Steven Porro: Well, there were a few moments the pros always say, and I got this out of my research, you got to take breaks. And there's a reason why. On an airplane, they say, put your oxygen mask on first before you care for your loved ones or your children. You've got to be in good shape, mentally, physically and emotionally, to take on this job and but and when my younger sister and I were taking care of our mother, we did take breaks. We went out for walks and things like that, because at that point a hospice nurse was there, so we never left mom alone. But those breaks were important. When I took it on full time, I say, I'm a guy, I can handle this, you know, and then I also, I knew there was going to be some stress. And one of the things, or two important things, I wanted to do early on, I wanted to return dignity to my mother, personal dignity to her, because I thought that was whittled away over the years with these other people and maybe just being neglectful as we get older, we don't really respect and honor our elders. And then I also wanted to return dignity to our house, so I renovated the entire house while I was there, because mom was like a baby. She slept a lot, and so during those sleeping hours, I would start tearing apart and renovating. So the first was the basement was an absolute disaster. So I got a lot of stress relief from ripping down walls and two by fours and pipes and all kinds of stuff. And then when I redid the basement. I built a man cave because I knew I needed some stress relief, and I bought a rowing machine, and we had a treadmill, and I bought some weights and things like that. So I was conscious of it, and but this, this thing that happened, I it was kind of a shock. It was just this one particular day. It felt like I got shot in the stomach and and I ignored it. I said, Oh, this is just whatever. I'm not sure what it was. And then I had a big fever that night. And it was June, and it was 90 degrees out, humidity in Jersey was probably about 90 percent, and I was sleeping in full flannel pajamas with a hair dryer underneath my covers, because I was so cold still. And then the fever broke the next day. And then I figured, oh, maybe I just worked out too hard. So I took a day off, and then I worked out again, and then this stuff came back again in a big way. And then so it was, I think, a total of four days, I drove myself to the emergency room, and as soon as I mentioned I have a pain in my lower left abdomen. They said diverticulitis, and I never heard of that before. And it was not only it was they the there were. Conception is new right away. They did a CT scan. They found out it was not only that, but it was punctured, and that was the infection that caused the fever, and that's the one they said, if it got into the bloodstream, I would have been gone. So that was a wake up call, obviously. And so it was funny, because what I called by is, can I swear? Because this is one bad word, is that okay? Absolutely, it's jersey. So I called my brother, I'm in the hospital, and they said, you know, this is serious. You have to go through surgery. And nobody knew, because I drove myself over to emergency. And so I called my brother, and I said, we have a problem, and it may be serious. And I said, we need to find somebody to care for mom, I may be here for a while. And you went, oh shit. And I wasn't sure if that was my predicament or his, because now we had to find someone new. So yeah, so one thing good about that, or a couple of good things, my motivation to get better, because it was, it was major stuff. They did some things, and ended up losing about a one foot of my intestines during this thing. But I wanted to recover as quick as possible, because I wanted to get back to taking care of my mom. So that was some motivation. But also at that point, I needed help walking like my mom did. I had to wear diapers while I was in the hospital like my mom did. I drank ensure and this protein mix that the same stuff we gave my mom so I was almost in the same condition, so the empathy for my mother just multiplied like crazy. So I guess that was a good thing, and the ice chips in the hospital were excellent, but the rest of it I could have done without. But it was, yeah, it was, it was interesting. So I would have to say the pros say, Take breaks. Please take breaks. I learned. I learned the hard way. Yeah,

some people come out of caregiving a bit battle scarred from having to learn those lessons over and over again, not not caring for yourself. Your memoir continues after your after your mother's passing, and in talking about that, after the last goodbye, there is another stage of caregiving beyond when the person is needing you anymore. And a lot of people skirt around that issue and don't, don't include it. But you said, in I think it's chapter 60, you said this, there was no time to register my heartbreak that must wait. And many people describe the grieving part as the final stage of caregiving, when you have to re enter the world again without your caregiving role, but with your caregiving emotions still very much intact. What was that aftermath like for you?

Mark Steven Porro: Well, I have to say again, being a guy, I think I like I said, I tried to push this stuff away. There was no time for it, because I was with my mom when she passed, and I was with my dad when he passed, also, and it was with my dad, I only had eight days, so that was tough, but he went the way I think would be envious of others. He was surrounded by love and a family, and he was in his own bed in his house, and my mom the same way, and I don't think with either of my folks, we left anything unsaid. We shared a lot. I wish my mom shared more, but she again, held a lot of her emotions to herself and but yeah, I mean, that made the passing much easier for me. It wasn't really said. It was definitely surreal, and certainly I was going to miss her and stuff like that. But boy, you know, what a lovely way to go. She wasn't in pain, or very maybe a little pain, like the day before. And I made a joke again, we make jokes in these things, but for someone who wasn't all that excited about living boy, she took a long time to go. It was like five days of just and it was miserable, because I stayed up for most of that so she still wanted to hang and we had, again, some lovely moments before she left and and then the after, I think after the funeral, is when I let it go and and then with, with the book, I'm very emotional, especially when it comes to family. I kept the notes. And whenever I would think about something, I would jot it down. But there's no way I could have written this book without. Some emotional distance, and I didn't really knuckle down and get to work until a couple of years later, a couple of years later, I was living in France, and this room is where I wrote the book. And yeah, so that took that time, and I'd have to say that was all part of the grieving process, and that's how I dealt with the grieving process, and I'm probably still going through it, because I'm doing all these you know, the book was certainly part of that, and I'm sharing mom's story all over the place, and it's lovely because it keeps her in the present, but I think it's still perhaps part of the grieving.

A lot of times, people are reluctant to share a story, especially when it contains so many personal moments, and yet one of the things we're highlighting today is that communication has been very important part of the story that you're telling too, that your family was able to talk about things and your mom was able to say things. I would be remiss if I didn't ask, on behalf of my memoir students here, how do you get over revealing the family secrets when you write a memoir?

I was really touched by many of the reviews I read of your book, and the one that really got me was tears kept me from finishing this book sooner. And I can share that I had a similar kind of experience. I had to put it down sometimes and just let my feelings go through. So it was both joyful and so very poignant to to read the book. So I compliment you on on plowing through a lot of really difficult material to get to have something that we could hold on to, a narrative that is really useful for caregivers and also very freeing, I think, for you to have this whole story intact in a place where where others can can learn from it. So let's shift gears a little bit. You change diapers. You argued with hospice nurses. You survived grain moth invasions. I don't even know what those are. And yes, you made a cup of tea. You don't want to know. I don't want to know. And you make cup of tea on a commode. If caregiving were an Olympic sport, what event would you win gold in? And what do you think the opening ceremony would look like?

Mark Steven Porro: Wow. I think patience. If there was a let's say, because I learned patience. The three important lessons I learned were patience, unconditional love, because at that point, I had no children. My first child was my mom, and I was never married and by choice and empathy. But empathy is not something I was unfamiliar with, because as a designer, you have to empathize with the end user of whatever you're designing. You have to know your client and who's going to be using it, who's looking at whether it's a brochure or a logo or a product, how are they going to interact and react to the shape of. Something, the color of something, the placement of it, and things like that. So I kind of had that going. But also as an actor, you have to put yourself in the shoes of the person you're playing or the character you're playing, and so empathy is a big part of that. And certainly going through those emergency surgeries that I did embellished any kind of empathy that may have been lacking. So those are three, three very important lessons. If we could put those, I'll take the gold, silver and bronze in those. I

don't think you have to be modest about that at all. It sounds like that kind of journey where you're going to come out on the top of the platform, and

Mark Steven Porro: the humor. Humor was the main thing, because my mother was very funny. So was my dad, and that helped, because, you know, I did ask her for permission to do this. After I cared for I went back to LA and then I came back a few months later for a nephew's wedding at the Jersey Shore, and so I took care of mom for another, let's say, two weeks, I told the people, relax. I'll take care of all the cooking and taking care of mom. And during that time, she just blossomed again. It was her first outing since this near death experience back in February, and she was the belle of the ball. She was just lovely and had a great time and wanted to get up and dance, and she's in a wheelchair. No, don't do that. Growing up with three sisters with long hair, I learned how to take care of hair and things like that, so I took special care and dolling her up and and during that trip, I just said, you know, she deserves this. And I asked her if you wanted me. She wanted me to come back and make sure I do this for the rest of the time. She wants to be here. And she said, Yes. And so that that was very important. And I said, Okay, if I do this, first of all, we're going to have fun. So I kind of set that rule right away. And then I also said, you trust me? She says, yes. I said, you trust that I'll keep you safe and healthy for the rest of your life. She said, Yes. I said, Okay, well, that means I'm in charge. Now you must obey me. And her mood completely changed. And you know, and then and then, but she puckered up for a kiss, like I called her a kissing band, that she loved the kisses, and I wasn't sure if that was a sign of surrender or one wishing me luck, so I gave her a kiss and hope for the best, because she's she could be a very tough cookie, and so I knew what I was getting into and but I think it worked out great. We both laughed a lot, even a silly moment. So there's one moment where it's quite a routine to get her ready for a bed at night, right? So the trip to the commode, then the sponge bathing, and then body lotion and take care of any medical needs, and then new diaper and change the bedding. And so just as I'm about to tape the new diaper, she starts peeing on me, and that might be cute if you're a new parent with a with a newborn, but not when it's your 90 year old mother. And I'm like, Mom, I just about to finish why now? And she says, it's natural. It's so how can you be mad. I mean, so she helped diffuse a lot of any tension and stress, you know, through that. So I just started all over again. And then before buckling it up, I said, Are you sure you're done? Now, she had no control over any of that stuff, so it was fine. And and again, we have to accept that they're still your mother and you still love them, but they're slower and more fragile, and then things have changed a bit,

right? And we have to cross a lot of taboos, like the ones that you mentioned, in order to be a good caregiver. There, there's, there's no more privacy. This is, this is the deal. I so appreciate your bringing all the laughter and vulnerability to today and to your book, it's a lot of hard earned wisdom on the topic, and you shared quite a few experiences with us. And I think your story reminds us that caregiving is not just a role, it's a transformation of both people, the love that the love that goes back and forth between you and the care, makes for a very different identity. I think, at the other end, sometimes it comes with a tiara, a bidet and a salad bowl against the oven door. But we cannot. We can't always say I did. I did. Readers are going to have to look at the book though to find out about that. We'll leave them hanging with that. But I did want to ask you, is there any last word you want to put forward for caregivers so that we we give them the best of your wisdom? Well,

is a beautiful gift to give your mother or anyone else who is in that situation, because one of the first things that falls away is our self esteem and and who we're about as we start to weaken from an illness. So good. Good on you. I want you to also tell our listeners where they can find your book?

Mark Steven Porro: Well, it's, I would Amazon's the safest place to go. They have all four formats. So it's in paperback, ebook, large print, paperback, and also the audio book, Barnes and Noble, I think just has the large print. For some reason, I don't know. It's on Kobo. It's on a bunch of other things. I'm not sure when this is going to air, but we're having a Mother's Day Sale. Actually, Kobo and Amazon will have the e book, I think, for 499 but those are the safest places to go. But our distributor has them in languages. I mean, they're not translated yet. We're starting to get foreign language translation going, but it's in stores all over the place, so I don't know what language it's really interesting. So around the world, and I've heard from some people in other countries, and they've bought the book, Australia, New Zealand, Spain. I'm not sure if Japan or not, but China is the first ones who are translating it. They bought the rights to do that, so they've got a few readers over there. So that could be kind of exciting. We'll see.

Yeah, delightful to share all this wisdom around the world. I think the problems of caregiving can translate easily into another language, because it's a very universal experience. So so I'm glad we have this, this guide and narrative about what it's really like, so that that people have a chance to regroup a little bit, because most of us don't think about it until that call comes, and then, then it's a very difficult thing to learn on the fly, but kudos to you for doing that, and also for for sharing this beautiful story with us. And I thank you very much for being my guest today.

Mark Steven Porro: Well, my pleasure. So again, I get to share mom's story, and that keeps her in the presence. So that's your gift to me. So I appreciate that. Thank you.