Meriam Boldewijn & Ashley Jackson | When Doctors Say, "We Don't Know" Podcast | Episode 404

Welcome to the show. My name is Eva Vennari, founder of the Elevate Institute, and I'm your host for today's podcast. When Doctors Say We Don't Know is an inclusive conversation, and so many are craving to share their stories and experiences, and today's guests are no exception. Today's honored guests— you heard me right, I have 2 today— Maryam Baldwin and Ashley Jackson. These ladies came to me as a duo, and I just could not split them up. Ashley is a caregiver for her husband and grandfather. Miriam is a caregiver for her husband and brother. And we're going to talk about a number of things, but really I want to get into the journey of becoming caregivers. This is not something you decide to do when you're 5, right? And the importance of self-care. So welcome to the show, ladies. Thank you. Thank you for having us. Yeah, absolutely. This was a different twist. Not really a, doctor, not really a practitioner, and not really from a patient level. This is, this is the in-between. And sometimes I think we get sandwiched into the middle of a situation out of need. And I think that's an important place to, to, to really look at how can we not just support those, our loved ones in our lives, but also the one ourselves? How can we do that? So I want to talk a little bit about each of your stories, how you ended up in this position and what you've learned about self-care. So who, who wants to start?

Let me start. Hi, my name is Miriam. I'm 50 years young, and like you mentioned before, I am the caregiver for my husband and brother. My husband was a diabetic as of his 15th— since he was 15, sorry, and He started suffering from kidney failure in 1999, and in 2003 he had multiple transplants, a kidney pancreas transplant. During those years, I was a caregiver, the cook, the driver, the cleaner, and I was running from test to test the whole day. And I burnt out because I didn't take good care of myself. Martin, his name is Martin, had many surgeries. He had ankle surgery, groin rupture, broke his ankle, eye surgeries, we lost count. And when things were finally getting better, in 2012, while I was at the office, I received a phone call from Martin. You have to call your brother right now. And I said, why? No time to explain, call him now. And I called my brother. And when I heard how he was talking, I hung up within 5 seconds and called the paramedics. He had a stroke while I had him on the phone.

How did you know? What was the sign within 5 seconds to know that quickly?

His— he was talking like, I, uh, that's what I heard, literally.

Okay.

I don't know what happened with me, but I hung up. And I called the paramedics right away, and I told them, you know, my brother lives alone. I just talked to him. You have to go to this and this address. I think he's having a stroke. That's what I said. I think he's having a stroke. So my brother was paralyzed on the right side of his body. And, you know, fear, anxiety, stress, exhaustion knocked on my door again. But when I burned out a couple of years before, I taught myself some techniques and tools how to not burn out again. And I had promised myself, Miriam, you will never ever ever burn out again. Thank God both of these two beautiful wonderful men in my life are doing great. My brother He's walking and talking again after the stroke. Martin, my husband, is doing much better. I'm still a caregiver. I learned a lot, but it's not like before. But I'm still a caregiver. I still take care of both of these 2 wonderful— sorry, wonderful men in my life.

And it wasn't necessarily something on purpose. It's you happen to be, you're, you're there in their lives, right? Because this is not your full-time job, or it wasn't before. What were you doing before all this?

I worked full-time as an administrative assistant. So besides working full-time, I had to take care of my husband, Martin, then. And I was also his driver, cooking, cleaning, caregiving. All of it besides working full-time.

Very easy to see how you could burn out. Ashley, how about you? What's your story?

Yeah, so like you mentioned earlier, I am the caregiver to my husband Troy and my grandfather, who I lovingly call Smitty. And unfortunately, both of these men have been affected by the nasty beast called cancer.

Hmm.

My husband, who actually was diagnosed before we even got married. So I'll take you back to 2017. At the very beginning of that year, on January 1st, we got engaged. And then March 28th, 2017, he was diagnosed with a rare cancer in stage 4. And we were just 2 and a half months newly engaged. So What you were saying, like, this just— you didn't ask for this, or, you know, it just wasn't something you said you want to do since you were 5 years old. You know, I was 30. I was just newly engaged. I was like, huh?

What?

Excuse me. Wait, can you repeat that, doc? Because I know I didn't hear you correctly. You know, and in my experience with cancer, I just equated that to death. I didn't know much more than that because of other people in my family that have had cancer. They passed away. So I'm just dumbfounded sitting there. And, you know, like Miriam said, you're taking that loved one to and from appointments. He had treatments. He sometimes had double treatments between radiation and chemotherapy on the same day. His hospital's an hour and a half one way away. So you just get burnt out. You don't think about yourself. You're too busy worried about others and what they may think if you say, hey, I need help, or you raise that white flag and say, somebody help me. You think that's weakness, so you just don't ask. So I burnt out pretty badly. I had physical ailments myself. So Over the time of his treatments and coming to the surgeries, he had a really major surgery that they had to take his left eye because of the cancer. The tumor where it started is what actually made it rare. It was started in his nasal cavity and it just creeped into his eye, his orbital eye area, and even went as far into his brain.

Wow.

So they had to take apart his left eye, a part of his skull, and a part of his brain when everything was said and done. Um, but this whole time, not only am I working full-time, being his caregiver full-time, I'm also planning our wedding because remember, we got engaged. So all of the things, a stretch of a year and a half. Um, we were able to get in, you know, married. I promised him we would keep, you know, pushing for the wedding because he said it was the only reason why he was doing treatment was to get married.

I'm curious, I mean, does that bring up a sense of— where were you in that? Is that a sense of pressure? Is that a sense of, oh my God, did I make the wrong decision? Is this— where was your mind and your heart in this journey? Because it sounds It sounds heartbreaking, but you— I mean, you've got a smile on your face, so tell me more.

I love that man. Um, he— even though it was filled with strife and agony along the way, we made moments where we could laugh and just enjoy the moment, even though it was hard moments. Because we didn't know, you know, I was literally planning a wedding with someone that I didn't know if was going to be there the wedding date.

Right.

But there was a part of me that, you know, because I had already lost my dad almost 10 years ago this year. And I was like, you know, my dad's already not going to be at the wedding, which makes it hard enough. And then I just, I have to keep moving forward because this is the next best man that's in my life. And I, I want to be able to have this moment with him. And I even told him, I said, if you're even too weak, have your best man push you down the aisle in a wheelchair.

You were determined. You both were.

Yeah. I mean, if that's what you want. I'm here for it because, you know, I finally found someone to match my crazy. So I mean, I wasn't, you know, gonna let him go. So we played off each other's strengths. So I think that's what kept us moving.

Yeah, that's a great deal of commitment. That's beautiful.

Yeah. You know, my grandfather, who was one of our biggest supporters in the very beginning, He actually talked to Troy a couple years ago, right before we got married, and he he did say, you know, I'm not just telling you this because this is my granddaughter, but you got a really good woman because a lot of people, a lot of women might have already left by now. And Troy told me, this is Troy telling me this story, and he said. back to my grandfather, I know, sir, I know. And that's why I want to marry your granddaughter.

Aww.

So, um, and then now, um, that Troy is cancer-free and we got to kind of breathe a little bit, now my grandfather has terminal lung cancer, the same one that was encouraging Troy, and he's Such a champion, even though he knows he has stepped into the next phase of his transition of his life. He is so strong, and it makes it even more rewarding to be in his presence, even though it might look differently. It might be a shell of the same person you knew, but in this moment, when he cracks a smile. or he cracks a joke, I'm like, it makes it worth it just being here with, you know, with him and being able to help him. So that is my caregiving journey. And I think Mariame could probably relate to this, even though when we try to go hang up our cape, something else might happen, or, you know, Life just happens and you can't fully ever take off that care— caregiver cape or cap. It's— I think now it's that it's been on for so long, it's just in some capacity I'm going to be a caregiver, whether that's, you know, being a present caregiver currently right now or in the future, or just being an advocate for other caregivers that are going through A struggle. And it can be a struggle, but there also could be a light at the end of the tunnel.

Right. Well, a light at the end of the tunnel. And you're, you're reminding me an awful lot of what I hear from first responders, from individuals who, you know, the firemen, the police, they're always like, once you're, once you're one, once you're a fireman, once you're a first responder, you're always one. Oh, the, the need to turn off at some point becomes great, or you do burn out. So let's, let's switch topics to that. I want, I want to talk more about these wonderful tools. Miriam was, was talking about that. I'm never going to be burned out again. Well, what did you do?

What did I do?

Yeah.

When Martin, after his first surgery, he needed 2 surgeries for the kidney pancreas transplant. After the first surgery in November 2003, I remember we had a conversation with a social worker in the hospital. And to give you an idea what my day looked like, I woke up at 5:30, started at the office at 7:30, worked until 4 PM, 3:30, 4 PM, took the car, 50 minutes drive to the hospital, stayed with my husband until 9:30, came back home. Checked emails, did some households, and went to bed maybe at 12:00, 12:30 AM. And the next morning— and this went on for weeks. That was my routine. I insisted to be with my husband every single day in the hospital. That's why I burnt out. So the social worker asked Martin, Martin, how are you doing? And of course, he was doing better after surgery. And then she turned to me and said, Miriam, how are you doing? And that's when Miriam broke. She cried like a baby for 15 minutes. She sobbed like a baby, like a child for 15 minutes, and I was mad at myself. I was mad at that woman because of her question. I was— I didn't want to— I didn't want to show my Vulnerability. I was the superhero. I was the one taking care of Martin.

With the cape.

I had my cape on. I had my cape on. So when I got home, I looked in the mirror and I asked myself, Miriam, what are you going to do for you? I couldn't answer. I looked again with tears in my eyes. Miriam, what are you going to do for you? I knew I had to do something because who would take care of Martin if something bad happened to me? And that's when I decided to leave my husband who was recovering in the hospital. I left him for one week and went to my home country in South America to breathe. It wasn't easy, but I had to do something. And when I came back, I started doing self-care, asking for help, seeing possibilities, grabbing opportunities, scheduling, organizing, socializing again. Once again, it didn't happen overnight. It took me months. It required a lot of courage, strength from Miriam. And it wasn't easy, but I didn't give up. I didn't give up.

I think that break you took to stop the momentum must have been not just hard. I mean, you mentioned that it's difficult to do, to pull yourself away from your loved one at any point like that when they're going through a battle for their life. But the, um, to come back and not only know that you had to do something different, but to create it from scratch. What was, what was your inspiration for self-care? A lot of people think self-care is, you know, they go and get their nails done, their hair done. That's just, you know, that's, that's different.

Yeah, it didn't start— it's— I started with very, very small things like Journaling for three minutes in the morning, and meditating for five minutes. And when I discovered that it helped me, it calmed me, I wanted more. Those three minutes became five minutes. Those five minutes became ten, ten, fifteen, and that's how I built it all up. Okay. So I didn't start with one hour right away. Because I didn't give myself permission to take 1 hour for myself.

Yeah, I hear this a lot from people. They— I don't have time to do that, Eva.

I didn't want to take time to schedule.

Yes, that's the difference. So you're making time.

I'm making time.

Yeah.

And because I do that, I can create more time for myself.

Very good. How about you, Ashley?

You know, we are all—

sorry, go ahead.

I'm sorry. We are all human. The last thing I want to say, we are all human. And of course, there are times when I feel like, okay, there's too much on my plate. And that's when I go to the mirror, look at myself. Miriam, what are you going to do for you?

Yes. And what is the answer usually?

Go do something for yourself. Self-care. Take more time. Make more time for yourself. And set boundaries.

Yes. Yes.

Hey, that's exactly what I was going to say. You know, setting those boundaries is so important. Because then you're telling other people that you value your time, that you value yourself. And if they have an issue with that, then that means they probably were time sucking from you, just sucking your energy, and they weren't really adding any kind of value to, to you in that moment. But I definitely, I agree with everything Miriam said. You know, and self-care looks different for everybody. You know, my self-care is gonna be different than Miriam's, than yours, Eva. So, you know, for me, I use music a lot. So sometimes I'll sneak out to my car and my husband will text me, where'd you go? And sometimes I'll see him looking out the window and I kind of like crank my my seat down. You know, sometimes you just need— you don't want to be bothered.

Right.

And I mean, I think that's just anybody. That's even non-caregivers, but especially caregivers. Sometimes we just want to sneak away and hide away for even if it's just 5, 10 minutes. Crank up my tunes, jam out, have personal concerts, or if anybody wants to see me singing and dancing in my car, They can view it. Um, you know, reading, writing. Actually, Miriam, uh, got me into journaling. Um, when I had put my journal up because I had started writing a book last March of— yeah, March 2020.

Mm-hmm.

Um, and then I kind of set it to the side and I was like, oh, I, I don't have time for this. She actually encouraged me to pick my pen back up and she said, you know, you need to share Your story. The world needs to hear it. They need to hear from more caregivers because I think we are kind of lost in the shuffle. You know, there's such a push to, okay, how's the patient? Is the patient getting taken care of? Well, who's taking care of the patient when they're not sitting in that doctor's office? We are, you know, so.

And that's, that's what I love about the focus of this particular podcast is, I mean, it'd be easy to go into, you know, what happened with the doctors and their care of cancer and diabetes and the whole recovery from stroke. It's like, I don't want to focus on that journey so much. This is more about you guys because you are the unsung heroes. You're the ones who are there all the time in the good and the bad. And you don't, you don't really have a secure, this is going to turn out okay. And that has to create a great deal of anxiety. And what do you do with that? So tell us a little bit more about, about this, this book.

Yeah, I'm so excited. I'm so excited. My book is for— first of all, this book is for everyone. People who have been a caregiver, who are a caregiver now, who will be a caregiver someday, and who will need a caregiver someday. Well, that's everybody. Caregiver 2.0 from Powerhouse.

From—

sorry, From Burnout to Powerhouse is the title of my book. In this book, I'm, I'm really honest about my journey that wasn't cookie cutter. I'm honest. I ask questions. Sometimes the reader might say, oh, Okay, don't go there. I don't want to get out of my comfort zone. But I needed to answer those questions back in 20— back in 2003. And that's why I ask questions in my book. Some of them might make you feel uncomfortable as a reader. But it's necessary to get out of your comfort zone.

Of what?

It's the story about Miriam, her brother, her husband, what happened, the mistakes I made. I even say, caregiver, don't be like me, in my book. I'm really honest. So I'm so excited, and on June 10th, Is the launch of my book Caregiver 2.0.

And where, where can we find it?

Amazon.com.

That's coming up very quickly. And in fact, it'll be around the time of the release of this particular episode. I always prerecord and then— yeah, I know. Yeah, you clap. So that's good. It's coming around, around the same time. So please look for it, Caregiver 2.0. Burnout to Powerhouse.

From Burnout to Powerhouse.

Beautiful.

Yeah, you know, and the last thing I want to say, making yourself a top priority by listening to the whispers from within is not a sign of egoism. You, you need to revitalize your energy so you, so you can extend your own quality of life and breathe, so you can, you know, you just can help others from A place of personal emotional prosperity.

Yeah, I believe that wholeheartedly. We're meant to love ourselves so that we can love others, because it becomes an empty cup that never gets filled unless we love ourselves first. So it's a beautiful story. And Ashley, your, your part in this book, you're— are you, are you writing it within the same book, or do you have your own separate book?

I actually have my own separate book. Um, but of course Miriam and I just are so closely knit. Um, it's almost like a 2-for-1 special you get with us.

Exactly.

So my book is for caregivers, uh, you know, inspiration, motivation, um, anybody going through a grief and healing journey. Um, my book spans about 10 years of my life, um, from when I lost my dad unexpectedly to present day. Um, so caring for, um, my husband and my grandfather and just the trials and tribulations of being a caregiver and the mistakes that I made and saying, hey, I did it this way, but you probably should do it this way. way. And my book is called Lost, Travel, Found: Turning Pain into Purpose. And that's exactly what I did when Troy was pronounced cancer-free back in March 2020. I decided to help other caregivers. And that's actually how I got connected with Miriam because she was doing the same. And it was like, Just the divine connection, I believe. So we've been on this journey together trying to share our stories with the world. Let them know and hear our roar because caregivers need more light shed on what we go through. You know, it's not like nurses and doctors— love them, thank God for them— but they get to clock out and go home.

They do.

We don't. We have to stay. Even though we might like to clock out and go, we have to stay. So just trying to share more about our journeys and hopefully it helps others. You know, me being 30, I wish I would have had someone my own age to connect to. So hopefully this book will help other younger caregivers out there as well.

And when is this set to go live?

Yes, so June 18th.

Very good, very close together. Yes, we'll also be on Amazon Father's Day. What a great time to do it considering—

Yeah, Father's Day weekend as a, as a nod to my dad, my husband, and, and my grandfather all in one. Um, it's going to be on Amazon, uh, ebook, uh, Kindle version. And also I will be, uh, doing a paperback as well. So, um, yeah, I'm, I'm really excited. You can find it on Amazon and I have, um, my website as well, um, that you can order from.

And, and we will share, I will share, uh, the website information. And once I, once it's live on Amazon for both of the books, I'll put those links In our show notes as well. But ladies, we are out of time, and I wanted to say a huge gratitude to both of you coming on to When Doctors Say We Don't Know today.

Thank you so much for having us.

Absolutely.

Thank you so much.

Thank you. So I want to say thank you to my listeners as well, um, for listening in today with Miriam and Ashley on today's show. And When doctors say we don't know, this has been an engaging conversation as always. And my goal for those listening will to hear the message of hope so that you too can turn your experience of pain into triumph. Exactly what those books are about. And if you're driving or simply can't click on the links to the.