Episode 229 – 8 Strategies Every Caregiver Should Know
Rob Shallenberger: Welcome back to our Becoming Your Best podcast listeners around the world! This is your host, Rob Shallenberger. We have a great guest with us today! I’ll introduce her in just a couple of minutes. I just want to get through one admin item briefly.
Rob Shallenberger: For those who may or may not have taken this, we just want to make you aware that we have updated the personal productivity assessment on our website, www.becomingyourbest.com, and it’s a pretty cool upgrade to the assessment – it puts out a graph there, it only takes about five to six minutes to take and it can really give you a good snapshot of where you’re at with vision, character, productivity, performance, your own satisfaction with life. So, this is a great assessment for you to take and to share it with your coworkers or other family members – have them take it! And it puts out a graph and evaluates basically where you’re at in your life right now and gives you an objective score. So, that’s the updated personal productivity assessment – I just wanted to make everyone aware of that. That’s on www.becomingyourbest.com, and anybody can take that. It’s free and it’s a great tool to get a snapshot of where you are today and specific things that you can do to really see some of those benefits of better health, better relationships, connecting with your true authentic self, and those types of things. So, with that being said, let’s jump into this!
Rob Shallenberger: So, we have with us today, Erin Galyean who has been a friend of ours now for a couple of years. She’s an amazing lady! She just released a new book, which we’ll talk about. There’s always a person or a couple of people every time you go to a conference, a keynote, or a workshop, who just stand out, and the first time I met Erin, this is who she was. She’s one of those standout people. She had great energy, a great smile, and she just stood out amongst the group. And so, we’re excited to have her here today. She’s a certified Becoming Your Best Trainer within her organization. She just wrote a book, she has a son, and I’m not going to give her whole background, but rather, I’m going to let her tell you a little bit about who she is, where she’s come from, and give you a chance to get to know her on a more personal level. So Erin, first of all, welcome! And tell everyone a little bit about who you are, if you don’t mind.
Erin Galyean: Hi, Rob. Thank you for having me! So yes, absolutely! I grew up in Philadelphia – in the suburbs of Philadelphia, in a little town called Newtown Square, which is kind of near Villanova for any of those basketball fans out there; they’ll probably be familiar with that school – and I was the youngest of three children. I come from a big Irish family with many cousins and aunts and uncles, but my little family unit was small and I was really blessed. I came from a very loving family. We just had lots of fun and we loved to travel and vacation as a family. So, I was really lucky as a child – a very magical childhood. And from there, I went to college to the University of North Carolina. I graduated in 1998. And then, after college, I moved back to Philadelphia and I became a pharmaceutical sales rep. So, I sold over-the-counter cough cold medications in Philadelphia and in New Jersey, and that’s really where my career began. I moved around the country with the same company. I’ve actually been there for 20 years. I know that’s kind of rare to hear about, these days, but when you work for a company that you love and the people that you love, it’s kind of hard to leave.
Erin Galyean: So, in 2013, I got married and I have a sweet stepdaughter – her name is Mallory – and then, in 2016 I had a son, and his name is Graham and he’s four. So, we are dealing with all the quarantining and isolation and making the best of it. From a pharmaceutical sales rep, I turned into a corporate trainer – and that’s where my passion lies. So, I really love what I do for a living, so I’m lucky in that way, as well, and I was lucky enough to meet all of you at the training conference and become a certified trainer at Becoming Your Best which I train my sales team on. Yeah, I get to do what I love every day, so that’s kind of fun.
Rob Shallenberger: Well, thanks, Erin! And I want to get into this book a little bit, because, at some point, I believe it’s going to apply to everyone who’s listening to this, in one way or the other. So, she wrote a book called “Badass Advocate: Becoming The Champion Your Seriously Ill Loved One Deserves”. So, talk a little bit about why you decided to write this, Erin. I mean, what was your vision in writing this? Why did you write it? Who’s it for? Just tell us a little bit about the book.
Erin Galyean: Like I said, I grew up in a very loving family. We had a few tragic events: my father passed away in 1997 from Non-Hodgkin’s lymphoma – so that was a rough time for my family; he brought so much joy and love to our family, just really a fun father; just really loving and a lot of fun. So, of course, that was a hard transition for my family and we survived it and we managed to get through that time. And then, unfortunately, in 2017, my sister Megan was also diagnosed with Non-Hodgkin’s lymphoma – purely coincidental that they had the same cancer, but the cancer that she had was actually the good news because it was really curable. But the cancer caused autoimmune disease, and the autoimmune disease caused lung disease. So, my sister was a very healthy 47-year-old, she was a former college athlete, mom of two beautiful girls and unfortunately, the lung disease just really was aggressive and rare – which, the one time in life you don’t want to be rare, is when you have a disease. So, this incident, basically really hit my family hard, and of course, her little family unit. So, over that time, my sister was in and out of the hospital and she deteriorated very quickly because the lung disease was so aggressive.
Erin Galyean: So, during that time, I realized that when I was advocating for her, as well as my family, the background that I have, as a pharmaceutical sales rep and a pharmaceutical trainer was really advantageous. I realized some things that I teach reps on how to speak to doctors, how to ask questions, they came into use – which of course, that was never my plan in life, but it did help me to better advocate for my sister. So, it wasn’t going to cure her. I wasn’t going to cure her, but at least I could get her the best care possible – and that’s any caregiver’s goal. Of course, we hope that our loved one survives and gets better, but that’s kind of out of our control. So, the one thing that you can do when you feel out of control and powerless is to advocate for them. And you can ask any doctor or nurse – especially those that work in hospitals – being a patient advocate is so important, and every patient needs someone to advocate for them when they’re sick because they can’t do it themselves, especially when they’re seriously ill. I’m not talking about having a cold; I’m talking about someone who has a serious illness. And so, that is really what inspired the book.
Rob Shallenberger: There’s people listening to this all over the world, and there will be a lot of people who are able to relate and connect to this. And there will also be some who say, “You know, this doesn’t really apply to me.” Well, the truth is, I’m pretty confident that this will touch just about everyone at some point in their lives. I mean, my mom is 65 years old and was diagnosed with early-onset Alzheimer’s 10 years ago, and she was just moved to a care facility probably about three and a half months or so ago. And we don’t know, it may be weeks, months left, but not much longer. She’s at the very end of this pretty vicious disease. One of our coaching clients – I won’t say his name, but just an incredible friend, a great leader of a large organization – he was driving with his wife on the freeway down to their cabin in southern Utah and one of the tires blew and the SUV rolled and his wife was in a coma for almost two years, if I remember the exact time right – they just took her off her life support, and she passed away a couple of months ago. But the bottom line is, I mean, these things, whether it’s a slow, gradual progression of early-onset, or whether it’s the tire that blows up, at some point, most of us are going to have a family member that’s in a situation where we’re going to be required to help them. This is something that I do believe is going to touch most people at some point in their life. It’s just a matter of when.
Erin Galyean: 100%. In fact, Rob, there’s a quote that I have in the book that’s from Rosalyn Carter, and it says “There are only four kinds of people in the world: those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need a caregiver.” So, at some point, it will touch all of us. And so, I’ve had people that have read the book that have said, “You know, I haven’t been in this situation yet, but now, I at least feel prepared for when that day comes.”
Rob Shallenberger: Is there a way to bypass all four of those?
Erin Galyean: You know what? I wish! Because that’s happened several times in my family, and I wish that we weren’t in that category. I know, none of us want to be in this situation and I know that you talk about pre-week planning, and it’s almost like a version of that – at a different level and a different scenario, but it’s planning for something hopefully you won’t have to deal with but most likely, we all will.
Rob Shallenberger: Well, it’s better to overprepare and not have to deal with it, than under prepare and wishing you would have prepared more, right?
Erin Galyean: 100%.
Rob Shallenberger: So, you have eight strategies in this book. I’d love to hear just a couple of those. Obviously, one thing that’s interesting about when you write a book – and I know that you just released this recently and if anyone is in this situation right now or going through it, I highly encourage people to get this and read it, and look at some of these strategies. Because I’ll just tell you, my dad has been a saint, walking through this with my mom, but it’s navigating through uncharted waters, if you will. And so, any strategies that you can get to help you stay ahead of the curve are helpful in this process. So, if you don’t mind, Erin, I mean, you’re going to start hearing stories from more and more people who’ve gone through these things as they apply these strategies, and you’ll get more and more feedback. But even already, I know that you have a lot of experience in this. So, what are a couple of the strategies that you’ve outlined in your book that people could learn from you?
Erin Galyean: So, I think the number one thing that’s most important for people and the number one complaint that I hear is that caregiving usually falls on one person’s shoulders. It just naturally happens. It’s usually a spouse or a parent, or it could be an adult child that maybe is the one whose personality is to step up to the plate or be the caregiver – maybe they’re more nurturing or maybe they’re the one that lives close by mom and dad. For you, it’s your father who’s taking care of your mother, right? So it naturally fell on his shoulders because he’s the spouse. So, what happens is, that person many times feels like they have to do everything. Of course, there is a lot that’s naturally going to fall on their shoulders that not a lot of other people can handle, especially if you think of the finance part of it. But, that doesn’t mean that you shouldn’t create a support team – and my first badass strategy in the book is to create a support team. And that can look different for every family. You come from a big family, so maybe that’s a little bit easier than someone who’s an only child, but you can pull people in and give them responsibilities that are even minor that would alleviate some stress from that main caregiver. That will make a huge difference!
Erin Galyean: So, when my sister was sick – I live in Dallas, Texas; my family lives in Charleston, South Carolina – I had a two-year-old at the time, so for anyone who has young children, you know how hard it is to leave them on a constant basis. My sister was my best friend so I wanted to be there for her as much as possible. So, I wasn’t always there, physically, but I was always there emotionally and doing things for her, advocating for her from far away. So, just to back up, my mother was the main caregiver, and of course, her husband who worked full time he would caregive for my sister as well. But my mom, because she’s retired, was that main person and her main advocate. However, I could step in from far away by doing things like, I call it in the book “VP of communications”, which is a title I made up just to make my sister laugh because you have to have laughter during a very difficult time. So, my job was to actually relieve some stress from my family who lived locally. They were getting a lot of texts, emails, phone calls from family and friends, which is wonderful, but when you’ve got a lot of other things on the plate, you don’t want to have to return all these messages.
Erin Galyean: So, what I did is I reached out to all of my sister’s family members and friends and said, “I will be the contact person. Now, it doesn’t mean you can’t send loving messages to my sister. In fact, I encourage you to keep doing so, but if you want an update on her health, please come to me” because I wasn’t there for the day in and day out, taking her to the doctors, taking her to the hospital, getting her out of the hospital. So, I was able to relieve a lot of stress with just that minor of a thing. There’s other things that we did, but that was one way that we could take that stress off my family. And my sister still got the love from everyone and I informed my family what I’d be doing, we all agreed this was a good plan, and I kept all of my sister’s good friends and our huge extended family informed. And, in fact, it was even mentioned at my sister’s funeral how much they appreciated being kept in the loop because they were all concerned about my sister and they all loved her. She was beloved by many.
Rob Shallenberger: Yeah, that’s great! I see the value of this because we’ve been through this for the last 10 years, and so, everything you’re saying, I can relate to. People in business have support groups. There’s a group called YPO. They have forums – it’s typically seven to 10 people in that range. One of the things that we see over and over in people who end up being highly successful through life – success being defined as they have a balance of success stories across every area of their life – almost always have a support group on the business side, in their personal lives, and especially going through a time like this. I mean, this is, again, uncharted waters for the people who are going through it, in most cases. I can just tell you from personal experience, having that support group is huge, even if it’s just a small interaction, or someone else that can jump in and take the person somewhere, or whatever it is. That’s a huge deal!
Erin Galyean: It’s a lot more important than maybe what you think you know, just hearing about it, but I’ll tell you, in the book, I give a list of different ways that people can help. Many times people do want to help. They just don’t know what to do, and they also don’t want to step on anyone’s toes. I have joined some caregiver groups on Facebook, on social media groups, and that is just the number one complaint I hear is, “I’m taking all of the burden” – especially when it comes to adult children who have multiple siblings. That seems to be kind of consistent. And it maybe isn’t that your siblings don’t want to help, but they don’t know what to do or maybe they’re not local, but there are ways people can contribute and it can be very effective and relieves responsibilities from the main caregiver.
Rob Shallenberger: Yeah, that’s a great point! How about one more strategy? What’s one more thing that would be important for someone preparing for or in this situation?
Erin Galyean: So, I think this is the best thing that my family did: we recorded conversations with physicians. So, I’ve been a patient myself, not with anything extreme, but just trying to get pregnant with my son, I went through a fertility treatment. So, even something like that was stressful, and I will tell you, when I was at the physician’s office, he would tell me things, and if my husband couldn’t make that appointment, I would come home and my husband would ask me questions, and I would look at him with a blank stare and say, “I don’t know!” So, I think what happens, from my experience at least, and just seeing my two family members go through this, a lot of times when you’re the patient, you get inside your head, and you don’t hear what the physician is saying – it could be shock, disbelief, stress; who knows what happens? So, recording the conversations with a physician was extremely valuable to my family.
Erin Galyean: So, what we did was very simple: we took the iPhone – we each have a phone – and whoever the advocate was for that day that was with my sister, we made sure to record the conversation. But the number one thing I would tell you is, if you’re going to do this, you need to ask permission of that physician. The goal is not to trap them or sue them or get them into trouble. The goal of recording the conversation is so that you can listen back to it later and make sure that what you heard is what the physician said. So, if they’re giving you instructions on how to take a medication, what the diet should be, anything that you discuss – maybe what the name of the disease is or the medication and how it’s dosed – that will be all recorded, and you can go back and listen to it when maybe you have time to take notes, and absorb the information and maybe when your nerves are calmed down. And that was huge! And I’ll tell you, it was also important because as a family, we communicated a lot – now, I have a tight family, so I know this won’t be for everyone out there – and we were able to work together and share that message with my sister’s permission. Clearly, there’s some legal things there, so you want to make sure the patient is in on everything that you do because they are the patient – and I talk about that in the book. And my sister was on board with sharing with my immediate family, and her husband, of course, and all the adults, and we were able to help each other and identify things and some people would pick out certain things than others, and it really made us a really strong badass team.
Rob Shallenberger: Yeah, that’s awesome! That’s a great idea and it’s funny that I’ve never heard that one before. But how many times have we all left the doctor saying, “Now, what did he say, exactly, again? What was that?” So, I mean, even if we’re not caring for someone – and like you said, with the certain stipulations of asking permission and things like that – what a great idea to record that conversation! I mean, with just my wife, I took her in to the doctor’s the other day, because she had a little eye issue that she was dealing with and afterward, her mom called, and her dad, and then her brother, and how nice would that have been just to have recorded. That was for something simple. Obviously, there’s going to be a lot more people who are concerned and want updates when it’s something more serious where everyone’s really vested in it. So, that’s great!
Erin Galyean: And you can go back and listen to it. If later down the line you need to go back and say, “I spoke to Dr. Smith three months ago, and he said something about this, and I can’t remember”, you have that recording saved. So, I talk about that in the book and some best practices for recordings and how to have that conversation with the doctor. And so, it’s all in there, and I really lead you through everything we did and I am confident that these strategies will really help you to get the best care for your loved one. It’s just a matter of doing it and figuring out how you can do it.
Rob Shallenberger: And here’s one more – this is just from our experience. Every situation, I realize, is different. Obviously, our friend, the coaching client who had the accident in the SUV and his wife was immediately in a coma, she couldn’t talk, so not an option. But here’s one more thing, and that is, if someone has something terminal or something very serious that may end up taking their life after a few weeks, months, or even years, one thing that we did with my mom eight, nine years ago – and we’re so glad we did – is we sat down, and we just had a recording device tucked away there, so she couldn’t really see it and wasn’t distracted by it, but we started just talking about her stories growing up. She had some horses – Zenyatta was her horse’s name and, “Tell us about Zenyatta. Tell us about the farm. Tell us about high school.” And she shared so many experiences and stories and we have those all now recorded that we can pass on to her grandchildren, great-grandchildren. And, at this point, she can’t even have a conversation. So, that just sparked that idea of recording. Recording stories can be so valuable when someone has something that may be terminal or could really degrade their memory or things like that down the road. So, just one more thought. So, here we go. A couple of last questions – I can’t believe we’ve been talking for 20 minutes already, Erin.
Erin Galyean: Are you sure? Because I can talk all day. It’s really fine!
Rob Shallenberger: So this was your vision, to get this? I mean, first of all, it sounds like your vision is starting to blossom into reality, getting this book out there and helping other people. Talk about what it’s been like for you, now that you’ve written the book, you published it, you had this vision to do that. How do you think this will help caregivers going forward? I mean, just talk a little bit about what’s next?
Erin Galyean: Yeah. So, what’s next? Well, first of all, getting the feedback that I’ve gotten – obviously, the book has only been out for two weeks – it’s been incredible. And my vision, you asked that earlier, and I don’t think I really answered it – but my vision is to honor my sister – she was a very giving person – and just to honor her by helping others who are experiencing some things similar that our family went through. So, I want to continue to do that in different ways. Obviously, the book is the start and I feel like I really can give good advice there from my experiences and my knowledge as a pharmaceutical trainer. But, on top of that, I’ve created a website, and I’m going to continue to develop that website where people can go and find resources and links. There’s already a bunch of valuable information on there, and I want it to continue to grow.
Erin Galyean: For example, you just shared a great tip about how you recorded your mom, and I didn’t think of that. I have other ideas, but that one’s great! So, I would love to keep sharing and I know the more this book grows and speaking to more and more caregivers, more ideas will come out and let’s just share them and help each other because watching your loved one – hopefully, they’re not going to pass away; hopefully, they’ll get out of it and recover. That’s the goal for everyone. For some of us, that won’t be a reality, but how can we make that experience for them the best experience so they get the best care possible? Because that’s all we really want. And I know this is really relevant during this time with COVID-19. It’s very difficult to hear these stories of people passing away alone and I feel for all these families. It breaks my heart to hear it. So the goal is to really help these caregivers and advocates and family members who are helping their sick loved ones through my website, through the book, and then, also, I have some social media accounts. So, I’m hoping through there, people can share their story, and again, we can just connect to people because that’s also how sometimes you find a doctor, maybe, who you don’t know or who knows what you can find through other people, just networking. And that’s my goal, just to help one another.
Rob Shallenberger: And I love that you articulated the vision because anybody who’s going through this right now, this is real to you, isn’t that a good summation of the vision – to give the person who we’re caring for the best experience possible? Some will live, some won’t live, but regardless of what the outcome is, not being outcome-focused but rather making their experience the best experience possible, and how do we do that, as the medium, and creating that support group and having other people to help and assist, because if it’s left to one person, it’s very easy to burn out, right? I mean, I talked to so many people who’ve gone through what my mom is going through, and they were the only caregiver there and they just literally burned out. Sometimes it was like caring for a two-year-old.
Erin Galyean: It’s called caregiver’s fatigue. I speak about that in the book, too. It’s really a defined medical term – caregiver’s fatigue – it’s a real thing and that’s hopefully what we can help people to avoid because you’re right, it’s exhausting.
Rob Shallenberger: It is! I mean, this stuff is real. For those who are going through it, it’s one of the main focuses of your life. So I love that vision of coming back to saying, how do you make this the best experience you can for the person who is being cared for? And, of course, that’s going to vary by person, but you’ve got eight strategies in the book, very specific things that people can do. And you mentioned that you had a website. Do you mind sharing that with everyone? I know that people who are actually in this right now, going through it, would love to go to your website and see what other ideas you have. So, do you mind sharing that, Erin, and anything else you think would be valuable for them, social media wise?
Erin Galyean: Absolutely! So, the website is easy, because it’s the name of the book. It’s www.badassadvocate.com. And, like I said, there’s resources on there, and links. Eventually, I’m going to have a shop. So, the website is new and the goal there is to provide ideas for people who want to either give the patient a gift, or maybe the family member. So, because my sister and I were so close, and I was the VP of communications – very elite title – people would reach out to me to ask me, “What can I get your sister? What does she need? What can I send your mom?” And sometimes I’d have a great idea, and sometimes I didn’t. And I wished, at that time, I had a website that I could go to and say, “Oh, here’s an idea!” So, that’s coming, hopefully by the end of this year, so if anyone checks out the website – come back. That’s something I’m going to start working on soon. But, in the meantime, there’s plenty of links. The other advantage I had as a pharmaceutical rep, that’s on the website is, I know where some of my medical directors go for valuable or reliable information – medical information. So, I put those sites on there; links to real websites, they’re legit. And sometimes we go on websites and we get misinformation, and I hate for that to happen to anyone. So, I give you legitimate websites you can go to, to find actual medical information. So I think that’s pretty valuable, too.
Rob Shallenberger: That’s awesome! Well, for our listeners, for anyone that might be in this situation or potentially could be or would like to at least be more prepared for it, there’s the website, I highly encourage you to go get her book. If you’re not in it right now, skimming the book would at least be helpful. Start thinking about those things because, man, I’ll tell you, all the people that we’ve had the chance to associate with who are going through this, wish they would have learned a little bit more about it before they were in the actual situation. So, at a minimum, skimming the book. If you’re in this situation, read it carefully, look through these strategies and I’m positive that a lot of these will be beneficial, just knowing this and having been through something similar in our experience with my mother. So, anyway, Erin, it’s been great having you here! Any final thoughts that you want to share with our listeners?
Erin Galyean: I just wanted to also thank you, which I didn’t get to mention, that the reason why this book came to fruition is because of Becoming Your Best. So, I had this idea after my sister passed away – to help others – and my idea really started small, was just to have a class maybe at a local hospital here in Dallas, where I could help caregivers that were upstairs and they could come down for an hour and I could give them my tips. And then, I went to Becoming Your Best and you talked about Bella writing her book, and I thought, “Well, if a nine-year-old can do it, I think I can write a book!” And I was an English major, so it was always something I wanted to do, but never had done and wished I had, and I did it! And it was all because you planted the seed and I created that vision and then I created goals and I really believe in this program – Rob is not paying me to say this, I promise you – but this is why I’m a trainer for Becoming Your Best, because I believe in it, and I live it. And I set goals, and I can’t believe that I wrote a book. I’m just a regular girl from Philly. So, hopefully it’ll help people, and that’s all I want to do, is just help people that are going through a really tough time. So, you can go to Amazon to find the book. I have it on Kindle and also on paperback. And it’s easy to find because it’s the only book called “Badass advocates”.
Rob Shallenberger: Thank you, Erin! You’re right! The principles are powerful. It’s amazing how simple those are, and now you’ve done something that before may have seemed impossible, and yet now you’ve done it.
Erin Galyean: 100%, yeah!
Rob Shallenberger: And not only that, but I mentioned this just briefly in our podcasts – this is just the beginning! You’re going to start to get stories, people are going to start sharing experiences with you, and this is going to blossom into something that’s going to help a lot of people. So, it’s amazing what happens when we identify our vision, when we start setting clear, specific goals, and getting that focus on what really matters most – we start to do what, up to that point, may have even felt impossible or difficult. And you’ve done it! So, awesome job, Erin! When I started the podcast, the thing I said is there’s always a few people who stand out as being amazing. They have a great energy about them, and you’re that type of person. So, thank you for sharing some of these insights. For all of our listeners, we invite you to go get her book, look through it, read it, learn some of those lessons, so that you can apply those when that time comes in your life – and you’ll be that much more prepared. So, thanks, Erin! Thanks to all of our Becoming Your Best podcast listeners. We appreciate everything you do! And remember, one person can make a difference! So, thank you for being here and we hope you have a great week.