Erin Galyean: 0:00

I really believe there’s so much opportunity to be involved in that patient’s life because I did it. And I’ll give you an example in case someone’s listening and they think, well, how can I do that? So what I said to my sister, when I realized, you know, I can’t be here all the time. I will be your VP of Communications is what I told her.

Rayna Neises: 0:18

That’s Erin Galyean sharing just one thing she did to support her sister from afar during her caring season. Welcome to A Season of Caring Podcast where there’s hope for living loving and caring with no regrets. This is Rayna Neises, your host and today I have a special guest Erin Galyean. Erin pharmaceutical sales trainer, professional speaker and published author. In 1997, Erin lost her father, Mike, to non-Hodgkin’s lymphoma, and in she lost her sister, Megan to a ,rare lung disease caused by non-Hodgkin’s lymphoma. These heartbreaking life events combined with her professional experience taught Erin how to effectively advocate for a patient. As a result Erin’s vision in life is to share her knowledge with others so they can do the same. In 2020, Erin published her first book Badass Advocate: Becoming the Champion your Loved One Deserves. In Badass Advocate. she shares eight strategies for advocating for a patient who is either home bound or hospitalized. In 2021 she published four journals to help caregivers, better balanced self-care with patient care. Through her book, journal and website (BadassAdvocate.com) Erin shares an abundance of valuable information with the goal of empowering patient advocates to get their loved ones the care they deserve. Welcome Erin. I’m so glad to have you here today.

Erin Galyean: 1:38

Thank you for having me.

Rayna Neises: 1:40

Ooooo, caregiving, such a challenge. Isn’t it? So share a little bit about your journey and caregiving and kind of how you were able to use your background to help with that.

Erin Galyean: 1:51

Yes. So you mentioned that my father passed in 1997. At that time I was 20 years old. So I wasn’t part of his caregiving team. My mom was really his main caregiver. I was in college, several states away. So I wasn’t really a part of that. But what I did learn from that was that going forward, if anything ever happened to another family member, I wasn’t going to not be a part of it. I wanted to be involved I had regrets of not necessarily the caregiving, but maybe the advocating aspect of it, where. I could voice my opinion, help them be their voice if they needed me to. Support them in any way possible. When you’re so young, you almost don’t know what to do. Although I feel like kids, these days are way more savvy than I was at 20, so maybe it’s different now. Then in 2017, my sister, Megan, who was also my best friend, said, was diagnosed with non-Hodgkin’s lymphoma also diagnosed with an autoimmune disease. And a very rare and aggressive lung disease. So the cancer that she didn’t know she had for probably about a year caused an autoimmune disease, that autoimmune disease caused a lung disease. And during that time she did go through chemo. When she was going through chemo, she couldn’t address the lung disease because of the medications and every that. So they kind of had to set that aside, which is not the best case scenario for a disease that’s aggressive.

Rayna Neises: 3:17

Mm.

Erin Galyean: 3:18

And although she was cancer free as of February of 2018, which we celebrated, you have to celebrate every victory you get. Right. She, unfortunately, her body just declined quickly. The lung disease just was so aggressive. And the fact that it’s rare was not a good thing. Right. A lot of physicians aren’t used to treating it. They don’t see it very often. And so over time, Megan’s, little body, she was five two, her little body just couldn’t fight it anymore. She had this, she was an athlete in college and she had the spirit of wanting to recover and be a warrior. And she’s two young girls. And so she wasn’t giving up easily. But it wasn’t her choice, as we all know, it’s, it is a partly, a mental battle, but really the physical battle can take over. And that’s what happened for her. And so during that time, I wasn’t her main caregiver either. I lived halfway across the country. Very similar to when my dad was sick. So several states away and my mom again, was the caregiver. My sister was married, so her husband also took care of her. And my brother lived down the street. So they had a great little network, as well as other, some friends and other people that got involved, but I couldn’t be there all the time. And I got there as much as I could, but it’s not the same. And so what I decided was because of my lesson from my dad being sick, I wasn’t going to not be involved just because of distance. And so I’ve found ways to advocate for her from afar and then advocate for her when I was visiting her, which I did as much as I possibly could. And what I figured out along the way was that my history, my professional experience of being a pharmaceutical sales trainer and I used to be a pharmaceutical sales rep, those skills, that knowledge really came in handy. Not because I knew the diseases, but because I had some skills and I was comfortable speaking to physicians, I was comfortable asking healthcare providers questions, maybe challenging questions or, you know, maybe handling a difficult conversation. Those things I was comfortable with because I was doing it all the time and now I teach others how to do that as a trainer.

Rayna Neises: 5:37

So many things. So first of all, I love that you learned from the first experience. And like you said, when we’re young, My mom was diagnosed when I was just 16 with Alzheimer’s. And so we went through 12 years of her progression of her disease and really she was nonverbal for at least eight years of that. I was there as much as I could be, but like, you actually lived in Texas, then they were in Missouri. And so it was a period of time that I was away from them was able to get back closer, is hard to know. It’s hard to know what’s going on, you really are intentional to check in because they’re so busy taking care of.

Erin Galyean: 6:16

Mm.

Rayna Neises: 6:16

Either being sick or being cared for they don’t think necessarily to pick up the phone and include you in every little thing.

Erin Galyean: 6:22

so true.

Rayna Neises: 6:24

having that communication is really important, but then you learn from that where your strengths were and how even from a distance, you could be a part of the team. And that’s something

Erin Galyean: 6:32

I always

Rayna Neises: 6:33

Yeah. want to encourage people. Team is where it’s at. You have to have a team when you’re in a caregiving season. If you don’t have a team, you are robbing others of the opportunity to help serve and love and bring their gifts and talents to the table at the same time, you’re also, affecting your ability to continue to be that caregiver. So I think it’s so important to bring in those team members.

Erin Galyean: 6:56

huh?

Rayna Neises: 6:56

I love that from a distance, you still found your place. So if you’re a long distance caregiver and you’re listening today, we just want to

Erin Galyean: 7:04

say

Rayna Neises: 7:05

Yeah. we’re glad you’re a part of the team and make sure you keep putting yourself in that mix and offering your strengths and offering what you can do

Erin Galyean: 7:14

because

Rayna Neises: 7:14

you can’t do things from a distance. I think a lot of times caregivers feel helpless

Erin Galyean: 7:19

yes.

Rayna Neises: 7:20

some of them say to me, I’m not there. I’m not really a caregiver. And it’s like, actually you have a really important role, even if it is just to continue to be your sister’s best friends. I mean you

Erin Galyean: 7:31

Yes.

Rayna Neises: 7:31

had to maintain that relationship and that’s important. So I just wanted to highlight that a little bit, that distance caregiving can be. Hard and guilt ridden. I think a lot of people feel really guilty

Erin Galyean: 7:43

Yes.

Rayna Neises: 7:43

that they’re not there.

Erin Galyean: 7:44

You know what? I love what you said. Cause so that’s my number one tip in my book is build a support team. So everything you just said is a lot of what I talk about, but one thing I don’t stress as much. And I love that you said this is that you are robbing people’s ability or the memory or the opportunity to be a part of that person’s life, whether it’s going to extend and they’ll be fine or not, think about the times where you are there for a friend who’s going through a rough time. And when you get on the other side, You’re tighter, your, you have a tighter bond and you can reflect back and say, thank you for being there for me, or you get the thank you. And so it’s that same thing. And I really believe there’s so much opportunity to be involved in that patient’s life because I did it. And I’ll give you an example in case someone’s listening and they think, well, how can I do that? So one thing that I did. And I talk about this in the book as well, and I go much more in depth, when we were creating a support team, we kind of fell into roles naturally because it was my immediate family. It’s not always going to be the case. So what I said to my sister, when I realized, you know, I can’t be here all the time. I had a two year old at the time. I will be your VP of Communications is what I told her. And I really actually said that to make her laugh because I thought it would be funny and we needed some laughter in our life. And I did was I took on the role of accepting all of the intercepting. I should say all of the phone calls, text messages from family and friends who wanted to reach out to my mom and my sister and my brother and my brother-in-law. And ask, what can they do? Or what can I get Megan? Or what can I get your mom? You know, how can I support your sister’s girls? Well, they don’t need to answer those questions. I can answer those that’s something that is lifting a burden off of that. And that I’m happy to do it from afar. And I feel like I’m serving a purpose because I’m the connector between all these people that love them and my family who I’m talking to anyway. Now that doesn’t mean that others were blocked from contacting them. I told my family, we had this conversation about it that I would take on this role. They were so appreciative and they were on board. So that’s important. And I said, so what this does is this relieves you from having to reply to anything. You still can, that’s up to you, but you don’t have to return phone calls. You don’t have to return emails and text messages. I will do that for you. But these people who love you, they’re probably still going to reach out. I’m going to encourage them to send you the love. So you hear from them directly, but just know that it’s okay, I’m going to tell them it’s okay. That you might not respond and to expect that, and that’s an easy one.

Rayna Neises: 10:20

So helpful too, just even answering the same question over and over again, you know, I mean, We’ve just recently gone through a situation with my husband’s health. And it’s one of those things that I was like, oh, who should I go? Am I supposed to be telling? And here we are in the middle of a procedure in the hospital and I want people to know that he’s fine and it’s going well. But at the same time, I’m thinking. Oh, did I tell such and such, I wonder if I should have told such, you know, it’s such, it is hard to think on the spot because you have so many other things going on, but it’s such a great role that someone can play for you. So I love that VP of Communications, right?

Erin Galyean: 10:59

And really should that have been your burden? You have so much that you’re, if you’re dealing with your husband being sick, you have many other things that you’re worried about your pet, if you have children, groceries, all of your regular life stuff on top of taking care of your level. This is an easy one. People can take over and say, I’ll take it. And I actually did this for my best friend a few years ago when she had some health issues and I was like, I’ll own this. So don’t you or your husband worry about it. I’ll take it. And so it can be replicated no matter if it’s a serious, really serious illness with a bad prognosis or something, that’s maybe short term

Rayna Neises: 11:35

And I think it’s to that communication that you’re offering back to the person who’s reaching out, they so appreciate it. Thanks for doing that, just be prepared they might not have the bandwidth to answer you or whatever your languaging is. You probably have better language than that but, being able to really express that. Hey, they love this. It’s making a difference for them. They just don’t have enough to be able to answer you necessarily right now.

Erin Galyean: 11:57

Yes. And you know, another way I did, which anyone who’s listening that maybe has a loved one going through cancer or any other type of treatment where they have this date coming up. Right. So scary date for them or something their dreading. What I would do is I would then take these text message groups that I created to communicate with. Like my sister’s friends was one text message group. My dad’s family. I have a huge family, so I had to break it up. My dad’s family was one of my mom’s home was another, and I would text them. Okay. Megan is going to have her chemo treatment today. If you guys can just pile on the love, just encourage her and my. This really. And especially for my sister’s personality says might not work for everyone. This really helped her. It helped her energy. It helped her mentally, emotionally. She was like, all right was feeling down. And now I got all these text messages. I don’t know if she ever knew that I was the one that triggered people, but it doesn’t matter. She got the love. She needed that day from these people that weren’t living around the corner or that could visit her.

Rayna Neises: 12:56

That’s so great. And I think, said, the encouragement, because the other thing that kind of happens when your loved one has an illness, is that everybody comes in with all these crazy suggestions

Erin Galyean: 13:07

Yes. Yes. Yes. Everybody is a doctor suddenly.

Rayna Neises: 13:12

Yes. I had this cousin who, or this horrible stories that don’t have happy endings. I mean, it is reality,

Erin Galyean: 13:19

I know not the time.

Rayna Neises: 13:20

hear that. Yeah, my cousin’s brother, he had that same thing and he died, you’re just like, oh, okay, take that foot out of your mouth. But sometimes they don’t even realize they put their foot in their mouth.

Erin Galyean: 13:31

I know.

Rayna Neises: 13:32

where even just, setting the tone for the kinds of communication and asking for what she needs versus people being left on their own to, To to offer whatever

Erin Galyean: 13:44

figure it out and it might not, it might not be the right way to figure it out. And you know, there’s so many that haven’t been through something like this, so they really don’t know. And so the guidance is appreciated on their end. At least that’s what I found, people want to, and you, this is going back to what you said at the start, people most people want to help. They want to play a part and maybe they can’t play as big of a part, whether it’s because they don’t live close or maybe they’ve got five kids that they’re trying to balance, they’ve got a lot in their life, you know, I don’t know everyone’s different. But they want to play a part, give them a role, give them something they can do and be very specific. And I talk about different roles. So VP of Communications was just one of them, but you know, you can have someone manage meal trains, like, okay, it’s my job. Who’s a friend that’s great at organizing. Sign them up. You’re the meal train organizer. They don’t have to make all meals, but they can organize the neighborhood, friends, family, who live local. And even from far away, I could have organized a meal. Thankfully, my sister had some good friends they did that. But you know, there are so many ways that you can play a role without having to be that primary caregiver. And it really impacts not only the patient, but also their family.

Rayna Neises: 14:56

Another great suggestion, because again, as we’re talking to caregivers, the caregiver is usually thinking, oh, I need to do that too. Oh, I need to do that too. And that just is one more thing that you can say to someone else, be a part of my team, do this for us. When that person says, what can I do to support you? You actually have something you can offer them to do, instead of just saying no, no, we’re fine. Don’t worry about it.

Erin Galyean: 15:22

Yes, please. Don’t do that, please don’t say you’re fine. And, and try and take it all on. My mom, who’s an amazing caregiver. I’ve learned so much from her over these two health crisis in my family. She’s the type though. She wants to she’s like, I’ll do it. I’ll do it all. She’s your typical mom, right? She’s gonna take all the responsibility and hold it all on her own shoulders, but that’s not helping her. She’s going to be exhausted. And that can cause that caregiver, fatigue and cause real issues with the person that’s supposed to be the healthy one, taking care of the sick ones. So it’s really your duty to give others responsibilities and you sometimes have to get creative. I know I’m lucky with a big family and people that were involved. Not everyone I realize has that. So start thinking outside the box, I would do a mind map or just start a brainstorming session. We’re writing down who can help people at a local community at a church in the school and your neighborhood, anyone and everyone that can do something little, like some of the things I mentioned and there’s endless other opportunities walking your dog. Some people love dogs. They don’t have one there. Give them that responsibility. There you go.

Rayna Neises: 16:28

What’s your top strategy that you share in Bad-ass Advocates that you want to make sure our audience hears?

Erin Galyean: 16:34

Yeah, so there’s eight and there, but there’s a few that always stick out that I feel like resonate with others. So one of them is to ask powerful questions. And this is where my pharmaceutical sales training came in handy. When I train reps, especially when they’re new, about how to speak to physicians, how to get them to open up. I teach them this technique of asking open-ended questions versus close ended questions. So anyone who’s listening, who is in sales will be like, I know this, but anyone who’s never been in sales may not think about questions the way that we do. So an open-ended question is going to evoke more verbiage. Like there’s going to be less boundaries around what the other person says. And those questions usually start with what, when, how, where, and they really, when you start a question with like that, For example, what are you going to do tonight? That’s an open-end question. You can tell me anything you want. I’m going to go to dinner. I’m going to go the movies. But if I say. What’s the restaurant you chose or what’s happening at six o’clock? You’re just going to tell me what’s happening at six o’clock. not going to give me this whole story. So when you’re speaking to a physician or nurse and you’re trying to get information, you’re trying to understand. Number one, don’t be afraid to ask questions. You are not the healthcare professional they are. And even if you are healthcare professional doesn’t mean you’re your loved ones healthcare professional. You may be in a different field, ask open-ended questions to get them to tell you more information. If you ask close ended questions, which are do, is, are questions usually give a yes, no answer. Now, if the physician or nurse is talkative, you may luck out and they may give you a lot more information then how you phrase the question, everyone is that way. They may just literally answer the way that you have laid it out for them. So what I advise in the book and I talk about this, even with my pharmaceutical reps, write down those questions, write down the questions that you have before a meeting with a doctor, if you’re going to the hospital to visit your loved one, write those questions down and then make them all open-ended questions. If you can. I realize some will not be, some are clarifying questions and they might start with do and is, and that’s fine, but make, as many, as you can open into questions, you will get much more information out of the other person than you expect.

Rayna Neises: 19:04

I think that’s such a important thing to keep in mind because when you ask a direct closed question, they’re going to answer you in the same way that you ask it. Especially, cause they’re so busy that they’re probably not going to expound, especially if you aren’t asking them to. And so just keeping

Erin Galyean: 19:20

Right.

Rayna Neises: 19:20

in mind the types of questions I do think it’s so important to think ahead, what questions you have because in the moment, you know, a lot of things can be happening physiologically that just sidetrack your brain.

Erin Galyean: 19:31

Yeah.

Rayna Neises: 19:31

Really being able to have that reference can be so helpful and then just being intentional in the way that you word them. Great tip there.

Erin Galyean: 19:37

Yes.

Rayna Neises: 19:38

What would you say your family did best?

Erin Galyean: 19:40

Yes. So this was something that we did not do when my father was sick, because there were not cell phones when my father was sick. So what we decided was remember, I lived halfway across the country. So I wasn’t a part of the majority of these conversations that my sister and my mom had with my sister’s doctors. So what I would do is I would call and it’s actually similar to your story. I would call my family and ask for details. Well, sister is exhausted, she’s not feeling well. My mom is exhausted. They’ve had a long day. I kind of get bits and pieces of what was said, but not the whole picture, or they may forget chunks just because. It’s easy to forget. They may forget it themselves. You know, even the next day they may think what did he or she say, I don’t remember it. So one day, and I don’t remember what triggered this, but I said, how about we start recording these conversations and we all have a recorder on our cell phone. While your cell phones with you cause we bring it everywhere. Ask the physician, if you can record a conversation because I’m not going to be there. And I would love to hear what he’s going to say. And my sister said, okay, so she asked him, he said, I’m fine with it. And they recorded the conversation. And then my sister, because we had our support team, my sister gave us permission to share it within our support team. So just a text message and we would start to label them like the date and the doctor that we spoke to. So we got better at it. As time went on, we started to figure out a system. And then whoever was in charge of that day of being with my sister was also in charge of recording the conversations, especially as she got sicker. So if the patient’s capable of doing it and you can give that to them and they want to own that great. If they don’t want to own it, that’s another great way for someone to support them. And then it’s a great way for the family or the support team to listen and take bits and pieces that they feel are most important. And then follow up with questions or specific points, whatever they need to everyone’s hearing the same thing. It’s not kind of like, oh, I heard this story and I heard this story. It’s not playing whisper down the wrong lane. Like we tend to deal when we’re looking.

Rayna Neises: 21:44

Definitely even when there’s a phone conversation. They’re engaged they have their questions, they’re getting their questions answered. Then you get off the phone with them and you’re like, so what did they say? you just said, blah, blah, blah. They summarize. And you’re like, Okay, wasn’t all they said

Erin Galyean: 21:59

Yes,

Rayna Neises: 21:59

you were on the phone for 10 minutes.

Erin Galyean: 22:01

that’s right.

Rayna Neises: 22:02

so that can be really tricky. So that’s a great suggestion. I, we did not, we, we often bombarded the doctor all went as far as family,

Erin Galyean: 22:10

I’m sure they love that.

Rayna Neises: 22:11

yeah. This is one alternative to that. You can just have one person and

Erin Galyean: 22:16

Yes.

Rayna Neises: 22:16

have the recording. like you said, you’re going to pick up things differently, you know, in your frame of mind. And

Erin Galyean: 22:22

Different personalities, different experiences. You know, everyone has different strengths on that team. So let’s use them together. And I will tell you, because I’ve gotten this question from personal friends who have now taken this tip used it, and they’ve successfully used. It have you had any pushback. We personally never had any pushback. So I always like to say up front that number one, you get the patient’s permission. You ha this is private health care information. Number two, then you always need to ask the healthcare provider for permission as well. When you’re in that room, please do not start recording without making sure that they’re okay with that. I think you could get yourself into some trouble. I’ve had multiple people, including my husband just recently did the same thing for his mother. No issue. I never got pushed back. So it seems to be working, which I’m happy to hear it. Wasn’t just my sisters, doctors.

Rayna Neises: 23:13

Yeah, and you do meet, different people. So it all is going to be different, but again, you wouldn’t want somebody recording you without permission. So it’s definitely has to be something that you ask.

Erin Galyean: 23:23

And then if they don’t give you permission, get out your notebook. Everyone needs a notebook when you’re a caregiver or a patient advocate, get it out start taking diligent notes. That’s your backup.

Rayna Neises: 23:32

What’s one self-care tip that you would recommend for our caregivers that are listening?

Erin Galyean: 23:37

Well, I love this question because self care is just so important. My one tip would be to create a strong morning routine. You can create a patient care plan. You know what you’re going to tackle head for that day. You’re focusing on not only a patient care, but then also yourself. So, whatever your thing is, if you like to meditate or exercise or pray or whatever it is, give yourself that time in the morning, 20, 30 minutes to set yourself up for really strong day that you’re not overtaken by the patient care. You need to strategize for it and plan, but you need to have a good balance. And if you don’t plan in the morning or the night before, if you’re night out, maybe mornings don’t work for you, but then your day is going to become chaotic. And that’s the best way to give yourself some love.

Rayna Neises: 24:24

Caregiving is so full of the urgent that we have to be intentional with the important,

Erin Galyean: 24:29

Yes,

Rayna Neises: 24:30

that tip because you do have to start off you get your day started. If you’re running late and you an emergency in front of you, just goes completely differently than you’re able to take your time and really get into that routine. So that’s a great tip. Love it wish we could talk forever. Thanks so much. Our time has gone by so quickly. Erin, how can people get in contact with you and find your resources?

Erin Galyean: 24:52

Yeah. So I have a website and easy to remember. It’s www.badassadvocate.com and then I’m on pretty much every social media platform. So if you look for Bad-ass Advocate, except for on tick-tock, I’m under just my name, Erin Galyean, but everything else that’s Badass Advocate. And I Share tips on there and articles and blogs and all sorts of things. So follow along.

Rayna Neises: 25:13

And books are available at

Erin Galyean: 25:15

Amazon, BarnesandNoble.com and walmart.com. Amazon is probably the easiest, but yes, Barnes and Noble as well.

Rayna Neises: 25:22

Great. Thank you so much for sharing your wisdom today experience. It’s always hard as a caregiver because we’ve learned the hard lessons by losing people that we love, I love that you’re turning it around and using both your professional experience and your personal experience to help other caregivers. It’s has been great to talk with you.

Erin Galyean: 25:41

You too. Thank you so much for having.

Rayna Neises: 25:43

Just a reminder A Season of Caring Podcast is created for the encouragement of family caregivers. If you have financial, legal or medical questions, be sure to consult your local provider and take heart in your season of caring.