As I Live and Grieve®
It’s time for grief to come out of the basement, or wherever we have stuffed it to avoid talking about it. When you suffer a loss you need support, comfort, and a safe place to heal. What you are experiencing is painful but normal, unique but similar, surreal but very, very real. As grief advocates we understand and want to provide support, knowledge and comfort as you continue to live and grieve. Host, Kathy Gleason; Producer, Kelly Keck. www.asiliveandgrieve.com
As I Live and Grieve®
Be a BadAss Advocate - Weekend Wisdom Series #1
Use Left/Right to seek, Home/End to jump to start or end. Hold shift to jump forward or backward.
Medical advocacy isn't just helpful—it can be life-saving. When Erin Galyean lost her father to non-Hodgkin's lymphoma in 1997, she couldn't have known that 20 years later, her sister Megan would face the same diagnosis, complicated by a rare and aggressive lung disease. Through these painful experiences, Erin discovered that her professional background in pharmaceutical sales and communication training provided her with unique skills to advocate effectively within the healthcare system.
The heart of effective advocacy lies in masterful questioning. Throughout our conversation, Erin shares powerful techniques for transforming closed-ended questions that might yield only yes/no answers into open-ended questions that extract comprehensive information from busy healthcare providers. This simple shift—asking "What side effects should we watch for?" instead of "Are there side effects?"—can dramatically improve the quality of care your loved one receives.
Ready to become a more effective advocate? Visit BadassAdvocate.com to explore Erin's books and her new interactive journal "Getting Through This Together," designed to create meaningful connections and lasting memories with seriously ill loved ones. Remember: your advocacy today could save a life tomorrow—maybe even your own.
Contact:
www.asiliveandgrieve.com
info@asiliveandgrieve.com
Facebook: As I Live and Grieve
Instagram: @asiliveandgrieve
YouTube: asiliveandgrieve
TikTok: @asiliveandgrieve
To Reach Erin:
Website: www.badassadvocate.com
Email: erin@badassadvocate.com
Social Media
Facebook: https://www.facebook.com/badassadvocate (@badassadvocate)
LinkedIn: https://www.linkedin.com/company/71141242/admin/dashboard/
Instagram: https://www.instagram.com/badassadvocate/# (@badassadvocate)
TikTok: https://www.tiktok.com/@eringalyean?lang=en (@eringalyean)
Pinterest: https://www.pinterest.com/badassadvocate/
Credits:
Music by Kevin MacLeod
Copyright 2020, by As I Live and Grieve
The views expressed by guests are their own and their appearance on the program does not imply an endorsement of them or any entity they represent.
Welcome to As I Live and Grieve
Speaker 1Welcome to as I Live and Grieve, a podcast that tells the truth about how hard this is. We're glad you joined us today. We know how hard it is to lose someone you love and how well-intentioned friends and family try so hard to comfort us. We created this podcast to provide you with comfort, knowledge and support. We are grief advocates, not professionals, not licensed therapists. We are you.
Speaker 2Hi everyone, welcome back again to another episode of as I Live in Grief. I tell you all the time, but I have to keep telling you how important you are to me, the listeners out there, and I know you're around the world and I'm just dying with curiosity or some of you are, although I can see in some stats, but I know you're out there listening and I have to tell you that maybe you think you're getting something from this podcast, but I'm getting so much more because I know you're all out there listening and I'm getting your support as well. That means so much to me and you have helped me heal in my grief as well. So on with the show. With me today is Erin Galleon.
Speaker 2Hi, erin, thanks for joining me. Hi, thank you for having me. Absolutely, I'm excited for this conversation. It's one I dragged my proverbial soapbox up from under my desk. It's one of my favorite things to talk about and this is intended, listeners, to help you, especially those that either now are in a caregiving mode, now going through some anticipatory grief, perhaps even if you've just gone through it, or if you haven't yet faced it. Who knows what's around the corner for us? Right Lights as a way. But we're going to talk about advocacy, especially advocacy for our loved ones who may be ill and either can't, don't want to or just don't seem to be able to advocate for themselves. So, erin, will you get us started and tell our listeners a little bit about your background? Who is Erin?
Speaker 3Absolutely so. I'll start my story. A long time ago, in 1997, my father, mike, was diagnosed with non-Hodgkin's lymphoma. I was just 19 years old, my dad was 52 at the time and my dad was the life of the household, right, he was the guy that when you went to a party you want to hang out with him. He was a great storyteller, cheesy joke teller at least that's what I thought as a teenager. Just as most teens are embarrassed by their parents, I was too. But I had this wonderful, fun and also loving and kind, sweet dad.
Erin's Story: From Loss to Purpose
Speaker 3So when he was diagnosed with non-Hodgkin's lymphoma, we were obviously heartbroken and my parents kind of kept it positive and we thought he'd be okay. Unfortunately, 10 months later, my dad passed away. So my family I have a brother and a sister and my mom we were all devastated and really there was just this big hole left in our house. You know this energy. Well, we went just I'm sure you talk a lot about grief, grieving, process and, in our own ways, 20 years later, my sister Megan, who was my best friend growing up, she was also diagnosed with non-Hodgkin's lymphoma. Oh Well, this was just such a shock, right? What we'd been told when my dad was sick was that non-Hodgkin's lymphoma was not genetic the kind that he had, and she had a different strand. The good news was actually the cancer. If you want to call it good news, I'll put air quotes there because it was curable and so through chemotherapy she would be cancer free. The bad news was that she probably had cancer for about a year and didn't know it. It caused autoimmune disease and that's what came up first. The autoimmune disease then caused a very rare and aggressive lung disease called obliterans. Yeah, and the lung disease was the bad news, the really, really bad news, and it's also known as popcorn lung. So you or some members may be familiar with popcorn lung. The reason why it's called that just little side note is because people in the factory who were coating the popcorn with, I guess, cheese or butter I don't know what they were spraying on the popcorn, but it was getting lungs and then it was called a lung disease. Hence I was here. Yes, so my sister did not work in a factory, she did not smoke, it was just caused by this lung cancer and this autoimmune. So she went from being this former division one athlete, very active mom of two who we always tease, could not sit still for more than five minutes to not being able to walk to just the next room without an alcohol. So, yeah, her body just deteriorated very quickly and it was really hard to watch.
Speaker 3At that time I lived and I still do in Dallas, texas, and my sister and family live in Charleston, south Carolina. So I would fly back and forth when I could to support my mom, my brother, my sister, of course, and her family, and in the meantime I would advocate for her from afar, which, of course, we can always talk about. Sure, I was there, I would do whatever I could just to support Megan, my lovely sister, and her family. Over time, what I realized was when I was advocating for Megan, I have spent the last 24 years in the pharmaceutical industry. I was a sales rep and then I got into learning and development. So at the time my current position and it is as well now was in learning and development. So I would teach pharmaceutical reps how to speak to physicians, how to ask good questions, how to interact with the medical staff, how to communicate different communication styles. All of these things that I've learned along the way and that I was now teaching others was really advantageous to advocating for my sister, megan, okay, when she got really sick.
Speaker 3So in the summer of 2018, megan just got really sick and I remember one time she was in the hospital for probably I think it was 24 days, which is a very long time to be in a hospital. That is, the physicians who loved her, and she had a young doctor who came in and hung out with my family and he said you know, megan, you're just so lucky because you have this family. That's super supportive. We rarely left her alone in the hospital, slept overnight. If you've ever done that, it's horrible. I'm sure you have. I have Right, you don't sleep. And so he said you know, I wish that all of my patients I go around and I see all these patients and a lot of them don't even have anyone who visits them.
Speaker 3And so it made me think that when Megan would get better, what I would do was maybe I would go to the local hospital in Dallas and I would teach, just like I do at my full time job. Maybe I would train these families who are upstairs visiting their loved ones. I would train them how to advocate for their loved one. That was what we were doing. It's not a science. It's just. I had experience, and a lot of people are thrown into this situation with no idea what to do. They're overwhelmed, they are stressed out, they are emotional All understandable. But I could maybe help them Well. Unfortunately, megan would not get better.
Speaker 3Megan ended up passing away three days before her 48th birthday in October of 20. And, of course, we were devastated, and after that I went to a very dark place. Not only had I lost my father now at 20, but then I lost my sister, when I am just at a very young age she is only 47. Oh gosh, when I'm not young girls, which makes it even more heartbreaking, of course.
Speaker 3So I at some point decided I've got to figure out how to get out of this dark place that I'm in.
Speaker 3I have a family of my own and they don't want to live with a mom and a wife who is fun to be around, and I also, in honor of my dad and my sister, who were happy, lovely people, I knew they wouldn't want this for me either, right? Well, that's when I decided to take the idea I had that previous summer and instead of teaching in a hospital, maybe I'd write a book, because I could impact so many more families through a book than I could at a hospital where maybe five to 10 people might come down, if that right. So that's when I wrote the book Badass Advocate Becoming the Champion your Seriously Ill Loved One Deserves. And since then I teach families, caregivers, how these techniques that my family used to advocate for their loved one, and it's a great way to find purpose in life after you have had a major loss. And it makes me think about my sister, my dad, all the time and honor them and also give back to the world by helping other families like mine.
Speaker 2Yeah, so you have created a legacy honoring your father and your sister, megan, and that is wonderful number one. Number two to be able to teach people. And I've said so many times I wish I could create a nonprofit to support advocacy and just put it out there and came real close. In fact, at one point I had a guest who was a doctor, a psychiatrist, and he's really upset that our primary care physicians are the first point for mental health disorders and they just slap a diagnosis, prescribe some pills because they've not been trained in the best way to manage these. So this psychiatrist wanted to create a nonprofit to teach primary care providers how to handle you know these concerns and I said we should band together because, you know, I think advocacy is the path.
The Importance of Medical Advocacy
Speaker 2I don't think you're going to be able to mandate the doctors to go through any more training. I really can't, because it's so ingrained in me I cannot imagine just sitting idly by and lately just accepting everything the doctors tell you about what they would like to do next. And I know sometimes, even when you say to a doctor, if they say, well, these are the options, or maybe they don't even give you options, they know, I'm just like this is the next step? Yep, to me, one of the first questions you should ask is are there alternatives? What are the other options? And even so simple, when you yourself are getting prescribed a new medication, one of the first questions what are the side effects? You need that information. Yet my mother's generation was taught pretty much that doctors walk on water and somehow that filters down through other generations, and that seems to be, in my opinion, the mindset of so many people that are faced with medical care.
Speaker 3Do you agree with that? Yeah, I think it's a combination of a few things. I think what you said absolutely generational. I think they are taught to respect the position and whatever is said, that's it, and that they don't almost have the right to give pushback or to ask a question. I believe to partner with the healthcare providers that we are not against them, unless if you are having a situation where it is not working well and you have to find someone else, always get a second opinion, no matter even after the number. But there are some extreme situations where it's like man, this person is not out for my best interest. I have loved ones, so that's one thing, but for the most part you have not. Only how do you have the right? You should be asking questions? So, yes, one part is generational. The second part is I'd mentioned that I to you offline that I teach communication styles to physicians, right so? Or to I'm sorry sales reps, and they know how to speak with physicians better, right? And nurses and all the staff.
Speaker 3Well, what I've learned through that is that some of us are very uncomfortable with asking questions, or we're maybe not uncomfortable, we're just not good at it, it's just not a skill that we've created. So I think it can be a combination or one of those three things, and that's why I teach techniques of how to ask good questions. I don't teach people what to ask because there are so many diseases I can oh, absolutely All diseases you can ask. But I certainly can teach you a technique. I can go over it now if you want, and I can also give examples of like how do you form a great question. Because there's a technique, there's a skill to asking questions, and so yeah, if you have tips.
Speaker 2That was going to be my next question, but at the same time I kind of want to find out first when you say you teach people, you find these people. How do they come to you and do you actually have like set workshops?
Speaker 3So two ways. One, I work full time and so part of what I do in learning and development is I teach communication skills. It's one of the workshops I'm accredited in, and so I've been doing that for oh gosh, like seven, eight years. I've been doing teaching communication skills. And then I also have like a side business like where I do 1099 work and companies will hire me. So same type of work, so I'll work with different teams will hire me to train their team. There's lots of companies that don't have full-time trainers, or maybe their in-house trainers aren't accredited or experienced in this area. So, yeah, I do it in different ways.
Speaker 3And then, with asking questions, I'll share with you that tip. So it's really simple. When you look at the questions that you're considering answering, first of all, I always say before any time that you're going to meet with a physician or any medical provider, write down questions, start brainstorming as a team and so let's say it was with your mom, so maybe your mom and you, and maybe your dad if your dad's still around or any siblings, anyone who's part of helping your mom get together and write down a list of questions for her doctor Just brainstorm. It's just a brain dump. That's where you start, get them all out. Then, from there, review the questions and you want to look to see if they're open-ended questions or close-ended questions. So an open-ended question is a question that starts with what, when, who, where, how, and in fact the question you just used as an example earlier was a close-ended question to start. You know what's interesting? You switched it to an open-ended question. It was great. It was great. I was so impressed, impressed. You didn't even know you were doing it.
Speaker 3The first was closed-ended because it started with r, so r can do is closed-ended questions are going to give the listener. The person responding is going to respond with a yes or no answer. Most likely, if they're kathy like me, they may give you more information. That's unsolicited, great, awesome, but you can't count on that. And if a physician who is pressed for time they're Kathy, like me, they may give you more information. That's unsolicited, great, awesome, but you can't count on that. And if it's a physician who is pressed for time, they're probably not going to extend the information, right. So what we do is we take those closed-ended questions the can-do is our questions and we look at them.
Speaker 3Now that you have your list of questions and you flip them. Now you can't always do this, but whatever ones, you can change them into open-ended. So, just like you did, you did it naturally. So you asked are there any side effects? I think was the question, and then I think it was are there any alternatives? Or alternatives? And then you said what other options are there?
Speaker 3Now, second question is better in this scenario, because now you just opened the door for that physician. The first one he or she could say yes or no. No, there aren't. But if you say what are, it kind of forces the listener to say oh wait, let me think about that. Maybe there are some other options. And what other ones can I come up with? Because now no doesn't seem like an option. So that's going to help you get more information.
Speaker 3And there's so many other examples Like I talk about. My mother-in-law last year was living with us for a period of time and she had had a surgery. And then I remember asking the doctor instead of can she go for a walk? A better question would be what kind of exercise is best for her? Can she go for a walk? That really narrows down the information, sure, opening it up to what kind of exercise that opens up the door. He or she may mention things that I never even thought of. Sure, so that's a technique.
Speaker 3And then change all of your questions that you can, from closed-ended to open-ended, and then also eliminate any that are kind of duplicates. Now one last point. Closed-ended questions are not bad questions, so I like to call that out. They are great for clarifying and confirming. So if you're trying to understand what the physician just told you, you can say something like am I right? Is this how I understand it? Is this correct? That's close-ended question. And then you get a yes or no or no. That's not what I meant. This is what I meant. Yes, you are exactly right, that's what I meant. So things like that close-ended question, you're getting that direct yes or no that you need. That's super.
Speaker 2It reminds me a little bit of at one point I worked for a car rental company and they had a litigation against them, and I was scheduled to be one of the witnesses, okay, and I actually had to go through a witness train, oh geez, and yeah, I know. And one of the points of that, though, was that whatever the question you get asked, answer only the question. So if they say, do you know what, blah, blah, blah, that's a yes or a no Right, they don't need to pee yourself into a corner where you should exactly that.
Speaker 2They don't need exactly, and that's what it reminds me of, those closed-ended questions. And it's absolutely right, and you're also right that I didn't even think about it when I asked the question, and sometimes I'm, of course I love to talk to you, say, chaddy kathy, I think they need the doll after me, and that was decades ago for the listeners that are too young to know about a Chani Cathy doll. But I tend to ask two questions at the same time, so the doctors often will slow me down. Yes, it can get interesting with them, okay.
Techniques for Asking Better Questions
Speaker 3Now. So I have a strategy for that too. Okay, good, this has never come up on a podcast. I'm so glad you brought this up. So I also coach sales reps to not do that.
Speaker 3The other thing that people will do and I don't know if you do this and us chatty Cathy's tend to asking questions can be very uncomfortable asking open-ended questions. That's also why you write them down. Number one, because we won't remember all these questions. Number two, because if you're reading it from a paper or your phone, it's much more comfortable to read something than to just come up on the fly with an open question.
Speaker 3It sometimes feels like you're putting someone on the spot, but you're not. You have the right to ask those questions. The other thing that we do sometimes is we'll ask a question and then we followed up with options, so I would encourage you to not do that. We do that to create a more comfortable environment for ourselves. So, for example, I could say what kind of exercise is best for her, like walking or lifting weights or doing leg exercises. No, stop talking, just ask the question and let them come up with the answer, because now you're putting words in their mouth and now you might have locked them into a few options, which you don't want to do. You want them to come up with the recommendations they would give the patient.
Speaker 2Yeah. So even myself, who is not at all afraid to advocate for someone, can ask the entire medical staff that took care of my husband during his illness. I'm not afraid at all to ask those questions. But even I am learning something here. Sometimes I just let my emotions race ahead of me Totally. And then the other thing and I want your feedback on this, if you please I am not in the field of medicine per se.
Speaker 2I'm not a nurse, I'm not a clinician, a therapist or anything. However, I have spent probably 20 years doing medical transcription and you learn a lot doing medical transcription. Right now I'm doing it for a cardiology group which came in handy when I was diagnosed with a cardiovascular illness, but that tends to feed some of my questions. And as well now, not when I advocated, necessarily for a relative 20 years ago or so. Now we have the internet, so if I hear the doctor use a term or a diagnosis, you know we'll finish the conversation. I'll go on and, oh, within a minute I'm researching more about that diagnosis, which helps me form more questions. So how does the internet play into this? If people are creating this list of questions, do you suggest they do some research on the internet?
Speaker 3Yes, so yes, with caution. So the internet is not policed 100% right. So actually, on my website I know we'll talk about this at the end, like where they can find me I have a page, a tab, that's called reliable companies and it's down because it's under resources. So if you go to resources and then you go down to reliable companies, I have listed some websites that are reliable. This is based off of my experience in the pharmaceutical industry. I have worked with physicians, pharmacists who use these websites. There are government websites, or WebMD is great. Reliable websites are ones that you can go and read about.
Speaker 3Don't go after the tangent and start clicking away, because then you may go down a Google search that you don't want to go down, and also keep in mind that there's a lot of diseases with a lot of similar symptoms, so we can scare ourselves. I've done it myself, we've probably all done it right, so just be cautious of that. What I would say is, in that scenario, when a doctor says a diagnosis or a term or medicine name, that's like complicated, they're always complicated, right? Ask questions in the moment, if you can. Can you spell that for me? Can you tell me a little bit more about that diagnosis? Can you tell me about that medication? Just to tell me? You don't even have to come up with a creative question, just tell me more. It will get you more information in the moment and just in the spell it.
Speaker 3I think that's a mistake I've made, where they come up with this long word and I'm like I have no idea what they just said. I don't even have to Google that because the spelling is complicated. So, yes, use research to come up with more questions. Just be aware the websites on my website will help you. Webmd is an easy one that I feel is reliable.
Speaker 2Yeah, that's one of my go-tos. Yeah, that's one of my go-tos as well. So can you let me formulate this question? It's in my mind. Well, it's kind of escaping now. I have so many thoughts.
Speaker 3Well, I have one more thing to add. So, while you're thinking, all right, go go, we're talking about questions. The other thing that I wanted to add was leverage the nurse. Okay, the nurses are so full of knowledge and sometimes I feel like we're so focused on the doctor that we skip over the nurse, who is an angel that will help you. Majority of nurses are so awesome. So here's an example of what I would do.
Speaker 3There is when my sister was hospitalized. There is a machine called the vital signs monitor. If you've ever been in a hospital and you've seen it, your loved one's hooked up to it most likely Not if they're in there for something minor, but if they're in something more serious. It will take all their vitals constantly and then that's the thing that starts beeping and going nuts if they lay on it or something goes wrong. Okay, well, my sister's vital signs were different than mine like her, good, negative vital signs, because she had a lung disease. So think about her oxygen. Her optimal oxygen was not going to seem as me because I'm healthy. Right, right, ask those questions. This is just one example, but you can ask us about so many things. What is optimal for her? What am I looking at here. Don't be afraid to ask the nurse those questions. They're in there fiddling around doing whatever they need to do. It's an optimal time to take advantage. They can talk to you and do their work, and I will say, majority of them. I really never had an issue, but I know that of course we're humans. There's going to be one in a million. That is not nice, but for the most part they're so willing to teach you.
Speaker 3I had a nurse go and grab this document that they use at the hospital for when there's an emergency, and I didn't even. I was asking her some questions. She's like you know what. Let me show you something. She brought this document in there and it's about basically what happens in an emergency, like how do you evaluate when you're running, when the patient not your long-on? It's not for families. I could take a screenshot of it with my phone and then I shared it with my family. It's in my book. I mean, it's not a secret, it's just for medical staff. But if you have that knowledge knowledge is power Then use it.
Speaker 2You never know what you're going to get. Yeah, and I think you'll find too that, especially nurses, they're willing to teach you and have conversations with you because it helps them 100 at almost every medical situation, now even a clinic. There aren't enough nurses and if they know that by teaching you something or sharing something with you, you can help alert them. If what you see that they told you is not happening, you can go get them or you can push the call button that helps them do their job. Yes, you become kind of their eyes and their ears with your loved one 100%.
Speaker 3So here's another reason why you need to advocate and why it benefits the staff, the doctor. They may not think of this initially, right, if you have a physician that seems a little irritated by questions. I never really had that incidence, but I know that happens. Right Again, we're humans. When someone is hospitalized, the hospital does not want the patient to be readmitted. So once they get discharged from the hospital, they get deemed in the US for being readmitted. So they were trying to avoid that as much as possible.
Speaker 3So use that knowledge to your advantage by, if you have anyone that seems annoyed by your question, just remind them. Hey, I am the caregiver, or my mom is the caregiver, whoever's in the room if it's not you or if they're not there. And the best way that we can care for my sister, my husband, my mom when we go home is if I ask you these questions and that will help avoid coming back here. And that may be something that would resonate with them in the moment because, well, they have their own personal life, they have their own struggles and challenges, and it's work. It is. You know, we all have frustrations at work, so imagine everything else that's going on. They're probably not annoyed with you for asking questions. They're probably just in a bad mood, so remind them. Look, I'm asking you these questions because in the end I'm going to be a better caregiver at home, if I understand, or in here in the hospital, and in the end it helps your hospital and it helps you.
Working with Nurses and Medical Staff
Speaker 2Yeah, yeah, you're absolutely right, and I think some of that is just if you have the right attitude when you ask your questions, that you are concerned enough to want to know. You want to know what's going on so you can be a helpful caregiver. I think it makes a world of difference as well If you are just someone asking questions, wrapped in complaints, for example. That's not going to get you anywhere. So try to check your attitude at the door, knowing that emotions are involved in this, because the person you love is suffering. You know. Just know that, and be a little more aware of your own attitude. So the question I wanted to ask you is can you in your mind think of the most important benefit of becoming an advocate for those you love in medical situations?
Speaker 3Yes, very simple. You get your loved one better care. I'll give you an example of this. First of all, I keep saying this because it's true and I think we forget it that all the medical professionals that you're working with, they are human. They will make mistakes not every one of them, but if you have a loved one that's sick for a while, it's inevitable that someone is going to forget something. Again. They're having a bad day. Maybe they have a sick loved one, maybe they just lost someone, maybe they're mentally not there and, unfortunately, because of that, your loved one could. There could be some detrimental actions that are unintentionally taken, right?
Speaker 3So my sister was on a medication that was not dispensed through the pharmacy. It was approved through the CDC, right. So it was very rare, hard to get. Anyway, my sister in that summer, when she had been in the hospital for 24 days, they moved her to a different room. So somehow I don't know if all hospitals have this rule, but hers did where they only want you in a room for a certain amount of days, probably for mental health, because you can go a little crazy from being in the hospital, and it's a real thing and so they moved her to a different room, which also meant that she had different staff and we had to move all her stuff, right. So, yes, my family helped, but also this nursing staff helped to move her things. Well, what happened was that medication that was critical was moved to our new room, but it was forgotten about because it wasn't being dispensed by the inpatient pharmacy, which inpatient pharmacy means the hospital pharmacy, right, right, right.
Speaker 3Typically for those of you who haven't been in this experience, when your loved one is hospitalized, the nurses will come and dispense the medication. It comes from the pharmacy that's in the hospital. This was not because it was specially approved by the CDC. Well, we've gone. I think my sister went two days without taking it, which is not a good idea. Again, a mistake, right, thank God for my mom and she is a badass addict. She was sitting there one day and it just, it was like a smacked her in the face and she said we haven't given Megan that medication and as she got, as she gotten it, it just occurred to her.
Speaker 3So things like that, they're minor, they seem minor, but they could have a really severe consequence. We have to be patient and you can make a difference in your loved one's care. And that's just a little story. There's other examples I have, but just keep in mind that being a voice for someone, especially when they're sick, is so important. They are not all there on medication. They could be depressed. They could be resting a lot, while they're not a part of the conversation and hyper aware of everything that's going on. Every patient should have someone that they can rely on and I know that isn't the case. But if you have a loved one, don't leave them to support themselves, even if they're stubborn and say that they're fine.
Speaker 2They need someone to be their second eyes and ears. Yeah, I agree 100%. One of the other things I will say that I believe is a benefit of advocacy I hear so many guests, so many people that have lost someone, so many people that are grieving. They ask themselves oh, what could I have done? What should I have done? Should I have done this? If you become that advocate, you're not going to be asking yourself those questions because you are going to know and be confident beyond a shadow of a doubt that you did everything you possibly could to make sure that your loved one got the best care.
Speaker 3Yeah, I did a webinar. This is last year and I had a woman that said to me at the very end it was a webinar like this, we could see each other and they could ask questions. And at the very end she said you know, I lost my husband a year ago and I advocated for him and I just felt like the hospital wasn't listening and she told me her story a little bit and she was really beating herself up. And I would say this that your job is not to cure your loved one, your job is to support them, and you do that in many ways. One is by asking questions, one's by being their voice.
Speaker 3You're also, you know, we're humans. We don't know all the information. Sometimes the doctors don't Like it could be a rare disease. My sisters, they don't have all. It's unfortunate. You get a raw deal. My sister got a raw deal.
Speaker 3But it doesn't mean that it's your fault, absolutely. Life happens. We are all mortal and unfortunately sometimes it doesn't work out the way we want it. And so do your best, even if you feel like your best, looking back, wasn't good enough. It was. You just did your best with what you knew at the time and there's no value in beating yourself up for the rest of your life. I've had to get to a point with my dad, not with my sister, but I beat myself up a lot when I was younger about what I didn't do. Through lots of therapy I figured out like my dad wouldn't want me to do that A and B. I did the best with what I knew at the time and so you know that's all you can do. Just do your best and just love them and support them, also emotionally. They're going through a hard time. Be there to listen, hold their hand, rub their feet if they like that. That's what my sister loved. Her feet rubbed, you know, things like that to them or whatever they want Absolutely.
Speaker 2Well, you know I could talk to you, I think, all afternoon, but you know that's just not feasible for either of us. So time is winding down and this is the point in the podcast. I'm going to turn the microphone over to you, erin, and let you speak directly to the listeners without me interrupting with comments or questions to the listeners, without me interrupting with comments or questions, which I do a lot. So the floor is yours.
Speaker 3Well, thank you. So if you would like more information, more tips, like you said, this was just the tip of the iceberg. We could talk all day. My website is badassadvocatecom. My book links are on there.
Benefits of Advocacy and Self-Forgiveness
Speaker 3I also have a journal which just came out last year. It's called Getting Through this Together and the idea of the journal it's almost like an activity book more than a journal, but it's really for a patient. So it's a great gift idea for a patient and it's over 50 questions for the patient and their loved ones to do together. So with patients. When they're sick, they have lots of downtime. Now, of course, they're resting. Sometimes, if they have cancer, they're getting infusions, things like that, or they're laying in bed at home.
Speaker 3Well, I reflected back to when my dad and my sister were sick and I thought about I wish I'd taken better advantage of that time, and so there's over 50 questions in there.
Speaker 3There's also doodling pages if you like to doodle, and they have prompts. So the goal is to sit there with your loved one, ask each other these questions Some are silly, some are serious, some are sentimental and you get to explore and talk about things that you probably wouldn't discuss on a regular day. And then if, unfortunately, your loved one, like mine, passes away this isn't for terminal patients, but if that happens then you have this beautiful keepsake. You have all of these memories and information and thoughts that they've shared with you and you've written it down and you've spent good quality time together, because that's something you can't get back. So that's why I created that, and on my website, like I said, I have resources. I have my podcast interviews, and so I'll saw posting this one. I have tons of resources, free things on there, and then links to my books and the journals which are on Amazon, just so you know. But if it's easier just to go to my website, that's a great way to just a couple of clicks and I'll take you directly there, super.
Speaker 2And listeners. If you haven't been here before, all of Erin's contact information will be in the podcast notes, so if you have to do is look there and reach out to Erin. This is something that is so important to me that I think if you have children, grandchildren, that are old enough and you start having conversations with them about illnesses, and especially long-term or heaven forbid a terminal illness, you need to include some advocacy talk in your conversations with them, because it is so important. And I know because of my own personal experience. I have two wonderful daughters, kelly and Stephanie, and I know beyond anything that when, if I become unable to advocate for myself, that medical team is facing a ton of questions from these girls Because they have watched me advocate for my mother, for my husband I didn't have the wherewithal to advocate for my dad when he died. That was before mom died, actually but I learned that there's power in asking these questions and that you need to do it.
Speaker 2So I'm going to go grab a copy of this book. I'm also going to check out that journal because I've heard of a lot of interactive type journals like that, primarily for a legacy, and I will throw in another unsolicited two cents in that it may not be the person that you complete it with, it may not be part of that couple that's going to treasure that journal, but I guarantee a generation or two down the road they're going to be able to get to know that person that they never physically were able to meet. So those little journals with those questions and answers can be wonderful, wonderful things in a family. All right, all right. So I've talked enough for now. This is going to be a bonus episode.
Resources for Becoming a Better Advocate
Speaker 2So I really feel that advocacy is so important and it may be too late for the person you've already lost, but again, we know how life is. It's going to happen again, and even for yourself, because as we all age, we're going to be faced with those issues. Advocate also for yourself, but please, please, learn to advocate. Go to Erin's website, check it out, check out her books and stay in touch. Let me know what you think, okay, and tune in again next time as we all continue to live in grief. Thanks again, erin. Thanks Erin.
Speaker 1Thank you so much for listening with us today. Do you have a topic that you'd like us to cover or do you have a question from one of our episodes? Please email us at info at asiliveandgrievecom and let us know. We hope you will find a moment to leave a review. Send an email and let us know. We hope you will find a moment to leave a review, send an email and share with others. Join us next time as we continue to live and grieve together.