I just wanted it to make sense. So I said, how can a disease that presents itself differently, but is the same diagnosis, be so differently handled across the country for a national organization like the VA? I don’t, I don’t understand this. Let’s make this make sense.

Are you caring for others while working and trying to live your own life? Wondering how to find the time for your own health and happiness? Well, you’re in the right place. The Happy Healthy Caregiver podcast, which is part of the Whole Care Network is the show where real family caregivers share how to be happy and healthy while caring for others.

Hello and welcome. I’m your host, Elizabeth Miller. I’m a fellow family caregiver, a care advocate, a professional speaker, author, certified caregiving consultant, and certified senior advisor. If this is your first time listening, thank you for being here. This is a show produced biweekly to help family caregivers. integrate self-care and caregiving into their lives. Each episode has an accompanying show notes page. If you’d like more detail about the topics, products, and resources we speak about, or you want to see any of the related photos, you’ll find the show notes by going to the website happyhealthyargiver.

com and underneath the podcast menu, click the image or episode number. For today’s show. The link for the show notes will also be in your podcast platform’s episode description. Now, let’s get to it. Let’s jump into this episode.

Before we get into today’s Happy Healthy caregiver podcast episode with Lisa Musselman, I first have a couple of announcements and segments to share with you on my own. The first one is, I want to know if your company or organization. That you are a part of prioritizes health and wellness.

If so, you might want to let them know that I’m a speaker. I provide educational webinars for virtual and in-person events, and I weave my self-care and caregiving stories throughout my programs. If you’d like to learn more, I invite you to check out the speaker page on my website and if you like. You see there, then definitely share that link with the decision makers in your company or organization. I’d like to thank our episode sponsor Cox Mobile. Cox Mobile’s recent research reveals a growing challenge. Members of the sandwich generation, those caring for both children and aging loved ones, are feeling the burden of digital safety.

In fact, 86% say that managing online safety for their kids and parents adds stress to their lives. As a member of this generation, I understand how overwhelming it can be to juggle your career, household, and keep your loved ones safe online. But here’s the good news, you don’t have to do it alone. Cox Mobile developed a suite of digital resources with support from Common Sense Media to help navigate these important conversations, to learn more about the research. And access these tools, visit Coxmosafety.com. I recently read a novel called Elizabeth Is Missing by Emma Healy.

It’s classified as a mystery, thriller, suspense, but I’d say it’s more of a drama mystery, frankly. The main character in this book is Maude, and she’s a care recipient who has some form of dementia. She’s what they call in school English class uh unreliable narrator. You’re also gonna meet some of the other. Members of her care team in this novel, including her daughter, her granddaughter, and other friends and family members. One of her current best friends is Elizabeth, and Maude is adamant she’s missing. But is she really?

Things happen in the present that ignite long term past memories for Maude surrounding the tragedy when she was young, throughout the book, and you’re gonna get little bits and pieces of this story to try and help solve the mystery. The problem is that They are mixed up with some truths from the present. It’s a clever plot that provides surprising insight into the mind of someone living with dementia. It’s believable and honest and also from the family’s perspective who’s trying to come to terms with this illness. Since you’re listening to this caregiver the podcast, I think you’re gonna also enjoy this book.

I gave it 4 out of 5 stars on Goodreads and I’ll link to it so you can learn more about it. Favorite thing that I want to share in this episode is a game. that in my family we call pounce. When I get together with my sisters, my daughter, my nieces and cousins, even my immediate family, we play a lot of games, and pounce is one of our favorites that keeps coming back for more. The object is to get rid of all of your cards, so it’s a card game, or as many as you can, and the person with the least amount of cards is gonna win that round of pounce.

It’s like playing your own game of solitaire, except everyone puts up their ace. is up in the middle of the table, and when you do so, you got to shout ace up when a new ace is put in the middle. Anyone can play on any of the aces and they can also, of course, play their own game of solitaire to reveal new cards. Hence, the name is pounce because you’re pouncing on the stacks of aces in the middle and you’re all trying to get your cards up there on those aces, so that eventually you get rid of all of your cards or as many as you can.

You set up your area just like you would a solitaire game, so, and so does. Everybody else set up their own solitaire with 7 piles and the top card facing up on each of those piles and then you’re gonna turn over the remaining stack of cards you have using 3 cards at a time. So very similar to what I think is typical in a solitaire game. The most important thing about Pounce is that everyone needs to use a noticeably different deck of cards because you’re gonna have to sort all these cards after you’re done playing around, so you need them to look different, different colors and We love to collect playing cards when we go on our vacations as a way that we can get more cards, and we certainly have our favorites that we like to play with.

I think other families might call this game something different. I was first taught it in college by a girl named Victoria who lived next door to me in my dorm room, and she used to call it Multiple solitaire, but we’ve been calling it pounce for years and I don’t even really know where that name came from. I did find a YouTube video that shows what this game looks like when it’s played so that you have a visual if you want to. of that. It’s most fun with 163 or more players.

It’s just not as fun with 2 players. We’ve played with probably 8, maybe even a few more, but your head’s going to spin with that many hands flying. I’ll link to the video and you can check out and see if Pounce is the game that you want to play in your family. 

Let’s meet today’s caregiver in the spotlight. Lisa Musselman is a 2025 Elizabeth Dole Foundation fellow, military caregiver, and passionate advocate for equitable care. For veterans and their families. Lisa talks about her caregiving journey, supporting her husband, Andy, a pre-9/11 Air Force veteran living with ALS while raising a family and trying to stay afloat herself.

Lisa shares the emotional and physical toll of those early years, missing milestones with her children, struggling to find respite and putting her own health last. On the brink of burnout, everything changed when skilled nursing entered the home. This support allowed her to rebuild strength through physical therapy and prioritize mental wellness with therapy and make space for joy through family vacations and visits with friends. What makes Lisa’s story especially powerful is how she’s turned adversity into a platform for advocacy. Motivated by a friend’s early encouragement that she would become a voice for others impacted by ALS, Lisa now champions policy and support changes for military.

Caregivers across the country. She firmly believes that veteran care should not be determined by your zip code, and she’s fighting to make that a reality. In this inspiring episode, we cover the real cost of caregiving on health, time, and family, Lisa’s self-care strategies for physical and mental recovery, why caregiving support can be life-changing, not just for the veteran, but the whole family, how Lisa stepped into her role as a caregiver advocate, the urgent need for fair, accessible. Veteran care across the US. Lisa’s story is gonna resonate with anyone, not just veteran military caregivers, but anyone who has felt isolated or overwhelmed in their caregiving role.

And it’s a powerful example of how self-care and advocacy can go hand in hand. I hope you enjoy the show.

Hi, Lisa. Welcome to the Happy Healthy caregiver podcast. Hi, Elizabeth, how are you? Doing great. Excited to chat and spotlight your story today. Thanks for, I know you’re a busy lady. Thanks for making time for us. We, we kick off the show kind of, you know, on the right foot as we, you know, a lot of it has to do, caregiving has to do with mindset. So I love this jar of things that I’ve collected, that have spoken to me and I’ve started even collecting some new quotes and things like that.

So people have ideas that they want to see in the next version of the caregiver jar inserts, definitely send them my way. But I want to get your thoughts on this, Lisa. It says, you are not a burden, you have a burden. And there’s a difference. What does that make you think of when it comes to life and caregiving? You are not a burden. You have a burden, and there is a difference. So to me that’s coming from something I, as a caregiver would say to my husband.

who I care for. My husband and I have an amazing relationship. We joke around a lot. Just yesterday, I told him he was high maintenance, but he’s worth it. And then I followed with, I’m high maintenance too. So, you know, it’s, it’s It’s the absolute truth, you know, he didn’t ask for ALS. It’s, he’s one of many, many unfortunately, former military veterans who have developed ALS, which is a service-connected disease, because veterans are at least twice as likely to develop ALS. So no. He didn’t, he didn’t ask for this.

Everything that I do for him, I have 100% certainty he would do for me if the roles were reversed. So true, right? I mean, sometimes in marriage, I feel like, you know, we say in sickness and in health, but that can mean a variety of different things. And so I almost feel like we should have a checklist of everything. That could possibly go awry and say, would you be guarantee you my, my daughters will. Our daughters will definitely know what in sickness and in health looks like because they were 2 and 4 years old when he was diagnosed, so they have grown up just knowing that caregiving was a part of their lives for a very long time and still is to some degree, yeah.

How, when did your husband, what’s his name, by the way? His name’s Andy. When did Andy get diagnosed? Andy was diagnosed in 2011. In fact, this Saturday will be the 453-year mark of his diagnosis, we call the diagnosed adversary. And um he had symptoms for about a year before that, prior to his diagnosis, which is not unusual. A lot of ALS patients, they have to go through a battery of tests and ruling out other things before they get a definitive diagnosis. OK. Well, tell us about your caregiving story.

I mean, you know, and, and specifically like how did it change your life? Like, you know, I always say, and I feel like when our person gets a diagnosis, we also get a diagnosis as family caregivers. Yes. You know, how did all that come about? What’s that been like for you? ALS especially, it’s 100% of family disease. I mean, it, it, it encompasses everything we do. When we had only been married 5 years when he was diagnosed, so it completely turned our lives upside down. Like I said, the girls were only 2 and 4 years old at the time, and it changed everything, you know, my happily ever after because I married.

Prince Charming. So it’s absolutely destroyed us. Um, and only 4 months prior to Andy being diagnosed with ALS, our youngest daughter was diagnosed with severe life-threatening food allergies. So my world just really fell apart in 2011 when I have two members of my immediate family with life-threatening conditions. Yeah. Wow, you had your hands full, and I imagine. Um, you know, it maybe changed your work environments as well. Like, were you working at this time? Was he working? Like how has that evolved? He was working um full time. He was the corporate controller for a company locally and he called himself the head bean counter.

And it started in his hands. So he thought, I’ve worked on a computer for so many years, you know, he was 49 years old at the time and he thought, I just have carpal tunnel syndrome. So, So he went to a hand spet first to see what was going on and, and that led to a series of other appointments, mostly with neurologists, who then finally, definitively decided it was ALS. So he kept working for about 2.5 years. You know, like I said, 2011 was really, really stressful for me. But by the time we got to the end of the year, I realized, hmm, he hasn’t changed that much.

He must have a slow progressing variant of this disease. You never know what somebody’s gonna get. And the fact that he was still able to work, still able to help out with our girls, still able to do his cycling that he loved so much, it helped me to relax, honestly. It made me realize, OK, I’m not gonna be a widow in the normal 163 to 5 year lifespan that they assign you when you are dealt this diagnosis. So, I was able to kind of calm myself down, but I started planning for the future.

I said, OK, I don’t have a 4-year degree. I’m going to be the breadwinner at some point, so I’m going to need to go ahead and, and start online classes. And I was doing that, but after about 2 years of that, the, the toll of caregiving for him as his needs and dependency on me is increasing, and the girls were still very young, and they needed things for me, it just became too much. So I had to stop going to school and just focus. Solely on my family.

Yeah, it’s a lot. It’s a lot to juggle and the physically and emotionally, right? Like you said, proactively preparing for the future. So what were the, what were those early days like or what’s it been like now, balancing caregiving with parenting and household responsibilities and financial responsibilities. So 14 years have brought tremendous amounts of change. When he was diagnosed back then, we didn’t need any help. For a while, but when we finally decided we did need help, and with him being a veteran, I reached out to our local VA and I said, What kind of options do we have here?

And they said, Well, you can have an aid in the house for 6 hours a week, it was. And I said, OK, that’s a start. That’s somebody who can sit with him while I run the kids to school or to dance or whatever grocery store. But what happens, this is a progressive degenerative. Disease. What happens as he progresses? They said, that’s it, 6 hours is the maximum. And I said, how can that be? So I reached out, we’ve, the ALS community is very, very well connected throughout the country, even throughout the world.

We’ve got Facebook groups where we communicate. I’m in a group for spouses, um, with caregivers of somebody who has ALS. I’m in a group for parents with young kids with ALS. You know, just all these different groups and veterans also. So I reached out to the veterans group and I said, hey, I’m being told we only get 6 hours of aid and that’s a maximum. How much do you get and where do you live? And I’m hearing 2 hours, 14 hours, 203 hours, 50 hours. I’m hearing just a wide spectrum and I, I just said, I’ve been told I’m the most pragmatic person that a good friend of mine’s ever met, and I just wanted it to make sense.

So I said, how can A disease that presents itself differently, but is the same diagnosis, be so differently handled across the country for a national organization like the VA? I don’t, I don’t understand this, let’s make this make sense. So I reached out back out to our um our VA in the Gulf Coast region and I was told we don’t have any control over that. Just 3 hours, 2.5 hours north of us in Montgomery, Alabama, they had 20. Hours a week. We had 6. I, I’m going, I just, so I said, OK, where do I go from here?

And I reached out to my senators, my representatives, and I called the White House VA hotline and I just made a lot of noise and I said, this is not fair. All of these veterans need to be treated the same. It should not matter what their zip code is. They should be treated the same across the country. Well, we didn’t get that changed, but what we did get changed was a massive budget increase for the Gulf Coast VA. So I, about a month or two after I sent that letter, I got a phone call from the director of the Gulf Coast VA and he said, I am so sorry to hear about what you’re going through.

We are getting you more help. And I had other people within the VA say, Lisa, what you did has helped out so many people. And I’m like, yay, that’s great. I said, I was doing it because I was drowning. I needed the help. The fact that it can help out others is, is fantastic. So, throughout the years, I can’t even tell you what year that was, probably year 7, maybe 8. Throughout the years though, as he has declined, he is at the point where he is fully paralyzed. He is trapped and vented.

He is bedbound. He is fed with a feeding tube. He has FTD frontal temporal dementia, on top of the ALS, so it’s difficult to communicate with him. We’ve reached the point where now through my Advocacy and my continued advocacy work throughout the years, we have 24/7 coverage now, skilled nurses in the house along with an aide to help them. So my role now, what’s changed so much is I’m now the ringleader. That’s what I call it. I’m the one who’s keeping hospice, the nursing agency, the aid agency, the pulmonary company, which is the DME company.

I order things from Amazon. I get things from the. I reach out to the pharmacist if I need to, I talk to people at the ALS clinic, which is the Mayo Clinic. So I’m the coordinator now and I’m the one keeping the whole ship afloat. Yeah, so it’s, it’s, it’s moved me from a hands-on. I was really truly the only hands-on caregiver for the 603st 9 years, and then we were able to start bringing in more people. And he was starting to get more comfortable with letting others help him.

Um, and that is a blessing because let me tell you, at 9 years, I was completely burnt out. I was not able to care for myself. You’ve got to make time to care for yourself. It wasn’t happening. I was probably in the worst health of my life. My blood pressure was through the roof, my cholesterol was through the roof. I was 20 pounds overweight, all of the things. I, whenever I would get a chance, like somebody who could sit with my husband, I would try and get to the chir.

Because everything hurt on me. So, you know, I was able to move with the, with the addition of the nursing help. I was able to move from that hands-on caregiver to taking a step back and being able to actually not only manage everything, but also take care of myself. What was the, what was the turning point for you of, you know, around that 9 year mark where you thought, like, this is not sustainable for me. It was him getting a truck. is when he got taking care of a trached invented patient is a 24/7 job.

You cannot leave them alone at all. And it was during COVID to make things even more fun. So I brought him home from the hospital after only, we’d only been in the hospital 4 days, which is fairly unheard of with a trach, but we needed to get out of there because of COVID and we’re basically running an ICU in our bedroom. So I knew he was going to be in a safer environment at home, but that The very first time that I took care of him to do his morning routine, once we got home with the trach, it took me 5 hours to do his morning routine.

And I said, this is not sustainable. So a very good friend of mine who lives in Idaho, she also cares for her husband who has ALS and is a veteran. And she said, she called me up and she’s like, Hey, how you doing? I said, Not good. I, I, I don’t know how I’m going to be able to sustain this. And she said, Where are your nurses? What nurses? What are you talking about? And she said, the National VA has a contract with Maximum Healthcare to be able to provide nursing services in the home for veterans that meet this criteria.

And when I looked up the regulation for it, it was basically my husband. It might as well have had his picture next to it. So I reached. Out to our VA and I said, Can you tell me more about this? They said, We don’t know anything about it. So I reached out to Maxim, our nearest office, and they said, We’ve been trying to get in touch with somebody at your VA for months now, and nobody will return our call. I said, Oh, I can make that connection happen.

Don’t worry. So once again, I was the person who brought the entities together and it changed everything. I’m frustrated though. Like, you, you’re the person who’s already, you know, managing your house, managing parenting your kids, helping your husband, and, like, is there a point where you’re frustrated that you also are gonna have to seek out these own resources and make these connections yourself and like, why are we doing this to family caregivers? Very much so. And not only that, but I also was helping to facilitate care for my father, who was a Korean War veteran and He needed to get his, his, he had a stroke and he was not able to live at home anymore.

He needed to go into the VA home. So I had to facilitate all the paperwork and make that happening. I would literally be on the phone with a social worker and say, OK, I’m talking about this veteran. Here’s the last 4 of us social, here’s the information I need to talk. OK, now we’re switching to my other veteran, and here’s the last 703 and here’s what we need to talk about. So that was, that was really, really tough. And when my father passed away 8 years ago. So that was at a point when I didn’t have care for Andy.

So I was not able to be there in the VA home with my dad when he passed because I had nobody at home with my husband. So it, it was, it was a lot. It took a lot out of me. We actually only reached 24/7 care with the nurses this year. And the reason we reached that was because of the Elizabeth Dole Caregiving Act. So that was one of the reasons why I wanted to join the foundation. I said, you guys have with your advocacy and with this act, you’ve given me a sense of normalcy, as normal as our lives could be, but a sense of normalcy back to be able to do things for myself, for our family, with our kids, you know, and I said, I, I want to be able to give back.

I want to be a part of this organization and I want to be able to fight for other veteran caregivers like myself, that I had the, the wherewithal and the fortitude to be able to get through that. I want to make it an easier path for those who don’t. I think it’s very common, you know, when I spotlight different caregiving stories that a lot of us feel, which is basically the foundation of my business too. It’s like, I don’t want someone else to have to, you know, go through all over all these speed bumps and potholes and dark alleys to find the information, fast track people to the support and the help that they need.

For those that aren’t familiar with the Elizabeth Dole Caregiving Act, like, what, what is in that? Like it was it was massive. It was a huge omnibus package and for that reason, it took over 2 years, about 2.5 years for it to finally pass, but it did in, it was either late December or first part of January. I believe it was the first part of January. It finally passed and it was just a godsend. It handled all kinds of things for not only veterans but also for veteran caregivers.

So it was Because basically the reason why we couldn’t have 24/7 care prior to that point was there was an antiquated rule before veterans were living at home on ventilators and running ICUs in their bedrooms. There was an antiquated rule that said the VA will not pay for more than 65% of the cost of what it would take to put them in a nursing home. So in other words, let’s say it costs, you know, $100,103 to put them in a nursing home. We’re not gonna pay you more than $65,000 to keep them at home, which is ridiculous and it’s not pay us, it’s pay for their care, but their whole, their whole motto is we want to have the veterans at home.

We want them at home with their families. We know they have a better quality of life and, and live longer and, and have more. happiness, if they’re at home, they’re more comfortable, everything. But this rule that was on the books was preventing that from happening. It literally took an act of Congress to change that, for them to be able to say, look, we’re going to pay the same amount to keep them at home as we would to put them in a facility. Yeah, especially you, you don’t have the whole team of people in place, you’ve got to work harder to kind of get that all together.

And then the other responsibilities, that’s assuming that people don’t have another person to take care of other family members, that the household and so forth. Well, good for you, Lisa, for getting involved and, and being an advocate and going back to like your, you know, the, the zip code where you said that that veteran care should not be dictated by zip code. Was it, was it merely a, was it a budget reason they were just allocating money different. I, I used to call um the Gulf Coast VA the redheaded stepchild of the VA system because we just didn’t have the budget.

So my pushing our congressmen to say, hey, we have a real problem down here. That’s what said, OK, they said we’re going to make some changes and we’re going to allocate more money to the Gulf Coast VA. So it made all the difference in the world. Good, yeah. Are you finding that in the ALS community and other caregiving communities that you’re For veterans, like, are people moving to certain areas so that they can get better benefits and that, that I haven’t really noticed. Moving a an ALS patient is really difficult, um, and especially with, I, I mean, it’s, it’s not unheard of.

I do know of, of a couple of people that have had to move that were not in the VA. They had to move simply because they had to be closer to family. Because they did not have, it’s, it’s a, it’s an all, all hands on deck disease. You cannot do it by yourself. So, like I was saying, you know, we moved here. My dad was in Mobile across the bay. I didn’t see him very often, but he was in no position to be able to help us out hands on anyway.

And that was the main thing that I needed as a caregiver. You know, I knew that there were resources out there for, you know, being able to talk to the. Therapists and, and being able to do things to support mental health and, and all that. And all of that is wonderful and super important. However, for me personally, I needed another me. I needed somebody who could be in my house. I had all kinds of neighbors and friends saying, let me run to the grocery store for you.

Let me do this for you. People wanted to cook us a meal, but of course with my youngest daughter’s food allergies, that wasn’t a good option. Either. I wanted to be the one cooking the meals. I wanted to be the one running to the grocery store and getting a break from my caregiving duties and, and all that. And like I said, I love my husband terribly, but it takes a toll on you. You have to be able to get away. And that was the piece that we were missing.

So once I got that, once we had the help, I told my husband, I said, I’m in this for as long as you are, as long as I’m not the only one doing it. You, you’ve definitely developed some expertise, a lot of expertise in advocacy, Lisa. What are your tips when people are, are, you know, what is the language? What are the tips? What are some of those lessons learned for fellow advocates that are caregivers, human caregivers, and maybe not trained in advocacy work, but what would you suggest?

So my first thing that I tell people that are newly dealing with this diagnosis or something that’s That’s critical also is come up with a list of things that people can do. People want to help. They just don’t know how. And so they’re going to throw out that, call me if you need anything, or send me a text. Now, have a list. Just have a list and let people know, these are the things that I need done. Anybody want to volunteer for this, that or the other, and, and get somebody also who can almost be like your manager of that if you’ve got a best friend.

Somebody who can say, I’m gonna even take that part off your plate, and I’m gonna coordinate all the people that can be helping. That’s the biggest thing is, is people don’t want to ask for help. They, they really don’t. They, they wanna be independent, they want to be able to do things on their own. But you will sink, you will burn out and you’ve got to be able to say, hey, this is something that I need help with and who can, who can do this for me?

Was it hard for you to do that at first? At first, it was especially hard because my husband was the one who was the stubborn independent, you know, we can do this on our own. We don’t need to get anybody else involved and especially with his own care. He was very modest, he was very private. He did not want anybody else taking care of him personally. But like I said, when you’re doing every single ADL for somebody, And then getting to the point where you’re having to hoyer them to get them anywhere.

And, you know, you cannot do it. He’s a two-person transfer. He literally can’t be transferred by himself. So he kind of had to get over that. And I think when he finally started letting other people do that personal care for him was when my brother passed away unexpectedly. That was about 4 years ago. And I literally had to cut the call. In the morning, and I, my brother was in Arizona and I had to figure out who can I get here that can take care of my husband so I can fly to Phoenix to go to my brother’s funeral.

He was only 216 at the time, and I ended up getting my sister-in-law to come. So she had to get off work from in Dallas. That was the nearest family member to us. So she had to leave Dallas to come here to Alabama so I could fly to. Arizona so I could attend my brother’s funeral. That’s crazy. Most people don’t have to jump through hoops like that. But no, especially in a time of grieving, like you’re grieving this horrible thing that suddenly happened, and then you’ve got this responsibility that’s so pressing that, you know, you can’t just abandon because not only did I need somebody here who could help take care of Andy because we had some nurses at that point, but we didn’t have around the clock, but Our children didn’t drive yet either.

 

So I needed somebody who could help be here to take care of the girls and get them fed and off to school and all of those things. So it ended up my sister-in-law was just a, a huge blessing to us and she has continued to be a huge blessing to us and, and be a pitch hitter for us whenever we need something. So it’s, we’re very, very fortunate that we have that. But again, I, I had to ask. I had to make sure we got somebody. Who could help, who could be here for us.

Well, good for both you and Andy for being open to having other people and accepting and growing your, your care team. I’m hoping that’s allowed you more breathing room, Lisa, where you have more time for yourself. Like, what are some of the fun things that you do? So with this year being the first year that we’ve had the 245/216 care, I’ve been making up for lost time with traveling with our girls. So we did a spring break trip to the Florida Keys in May. I was able to travel to Washington DC for the Elizabeth Dole caregiving, the Fellowship, excuse me, not the fellowship, the convening that they had.

I was able to give a speech there and connect with other military caregivers and that was, that was a phenomenal experience. I was able to go to Capitol Hill and speak with our senators and representatives and just do more advocacy. And we came home from that 220 days later, my sister-in-law again came to sit with Andy and be here with him for 260 weeks and the girls and I went to Japan. And Korea. And we did kind of a bucket list trip. They, I used to travel a lot when I was younger.

I’ve lived all over the world and I’ve traveled extensively and I had missed it with the years of raising young kids and caregiving. We didn’t go anywhere for a very long time. So all of a sudden, it was the ability to travel, we said, let’s go. And it’s, it’s been incredible to be able to spend that time with them and make those memories, especially because my oldest one’s going off to college next month. Exciting, exciting times. And you know, I’m sure Andy’s appreciative of you coming back, you’re, you’re feeling rejuvenated, refreshed, you know, what, what lies ahead.

And then he’s hearing the stories and hearing about the memories and, and, you know, wants those things for his favorite women, I’m sure. How have you helped your children navigate life, you know, is it with a parent with ALS, you know, and protecting their childhood, what’s that been like for you? So. There’s only so much protection you can do, you know, they’re living in a house with somebody with a terminal illness, and we protected them when they were young by telling them, Daddy has sick muscles. That’s why he can’t pick you up anymore.

And it wasn’t until they were in elementary school at some point and they had access to computers and they were able to figure out how to Google and that’s when they learned what ALS really was and we had to sit down and and have talks with them and there were a lot of tears shed when they realized that’s gonna die. Yeah. There’s no cure, there’s no stopping this thing. For a while, they had to go to therapy and then they were OK. I, I think they went through the same thing I had done.

I had just done it many years earlier. It’s called anticipatory grief. And when you know, this is what’s coming, it’s inevitable. It’s like a freight train, you can’t stop it. And you just, you have to learn to navigate your life around that. You have to learn to be able to say, yes, we have this cloud that’s hanging over us, but we still have some joy. We still have so much to be thankful for, so much to be grateful for. And our children, honestly, honestly, they are thriving.

They are both straight A students, they’re wonderful, smart, kind, and extremely empathetic children. They are what military caregiving children, they’re called hidden helpers. So we as the military caregivers are called hidden heroes. Because you’ve got your heroes, you’ve got your veterans up front and central and everybody rah rah about the veterans. To serve, but the caregivers are also serving, and the children of the caregivers and the, and the wounded veterans are also serving. So they’re called hidden helpers. And we’re actually going to a hidden helper summit next month, more travel right before school starts.

Uh we’re going to that and that’s sponsored by the Elizabeth Dole Foundation, and it is for the kids to be able to connect with other children who are hidden helpers. And my daughter Sarah has been asked to be A speaker as a on the panel to be able to to talk with others. So she’s she’s excited to be able to jump in with both feet too and and be able to have her voice heard. And, you know, now that we have nurses, she’s not, she’s not as hands-on as she used to be, but for a long time, she remembers, you know, mom stressing out and Sarah, come sit with dad while I go try and put some dinner in the microwave for us and section them out and, and, you know, move his hand for him, hold his drink.

for him, you know, whatever. They both remember all of that very, very well. And now their role is more of an entertainment, you know, they, they like to get around dad and and be silly and do silly things. And that was one thing that they really loved about the trip to Japan was when he had been stationed in Guam when he was in the Air Force, he took a trip to Japan back in the 270s. So he had always told us about his time in Japan and how much he loved it.

So They loved being able to go and then come back and tell dad, Hey, we’ve been where you’ve been. You know, we even found an old picture of him that was taken from the same vantage point where the girls and I had a picture taken. So that was really, really neat. We knew we’ve, we’ve been where dad’s been. I love that. I mean, you know, and I appreciate you, Lisa, talking, you know, yes, this is difficult and very hard, and yet this is also your life and the life of your children.

And talking about that there is joy in every day, what, you know, What does that look like for y’all? Where, where are you finding pockets of joy in the everyday? Oh gosh, everything. Just the, our youngest daughter Sarah, she’s a taekwondo black belt. She’s actually gonna be testing for her 8033rd degree black belt this, uh, December. She has always wanted to be able to perform for her dad. Like we get him in the wheelchair and he comes to her testings and her anytime she’s gonna be performing, he’s there.

So she wants to do well for. Him. So that gives her a lot of joy to be able to do well for her, for him and succeed. And when she’s in theater productions, both of them have done plays at school. He’s there. Just, it’s, it’s things like that, that we still, she’s taking voice lessons. And, and I told her, your dad used to take voice lessons. He wanted to sing well also. So she loves being able to do that. Our oldest one is much more like Andy.

She is quiet, quiet, but she’s more reserved, I would say. Um, she’s not quite as goofy as the younger one. And Sophie. She is just, uh, an absolute brilliant mind. So for her, it’s, it’s the academic success that she’s so proud of, being able to get the highest scholarship that the college is offering, have offers of free rides to places, things like that. That’s, that’s what brings her a lot of joy. Held down a job for over 2 years and is now finally leaving it just because she’s going off to college.

She’s just got that, that good work ethic like Andy had. So we’re just, we’re both so incredibly proud of them that in spite of everything, they are flourishing. They are, they are doing so well. They, they want to do well, they want to be successful. They make us proud every single day. So a lot of that’s what brings joy. What, what brings Andy joy is just being home and it makes me happy to know he’s happy. We also, we don’t do it very often because it’s It’s an enormous feat to do it, but we have a beach condo down in Orange Beach.

The beach was very special to Andy and and I. 214 years ago, we got married on the beach in Saint Thomas. So when he couldn’t travel anymore due to we couldn’t find anything accessible, we just decided, you know what, we’re gonna go ahead and buy our own. And make it accessible. So that’s something that brings him great joy to be able to go down there and lay in bed and look out at the water and see the beautiful beach. No, he can’t get out on the beach or he can’t get in the water, but it gives him a lot of joy to just be able to be down there and be with our family and make those beach memories with our family. Absolutely.

And is this, you know, gorgeous condo that you have in the Orange Beach, Alabama area, is that something that you rent out? We do, yes, as a matter of fact, um, it’s, it’s a, it’s a blessing to us and a blessing to others because we couldn’t afford to have this place. It’s, it’s an enormous amount of upkeep if we didn’t have people renting it. And the people with disabilities and who need the accessible options weren’t able to travel to our our, our beaches at all. There was nothing.

There was nothing available other than an ADA hotel room. And because we have this condo that’s almost 214 square feet and sleeps 10, we keep ahoyer lift in there for people to use. We keep a shower chair, it’s got a rolling shower. You know, we just made it so that come to the beach, yeah, you got to bring your supplies and your things, but your big equipment that you can’t travel with, we’ve already got you. It’s here. It’s in the closet waiting for you to use, so I keep a guest book in there, which is not normal.

Most people have like a VRBO or an Airbnb. They don’t keep a guest book in there, but I keep one in ours, and I keep a picture of our family with my husband in his wheelchair and our girls. When they were younger and we’re at the beach. And I keep that to show people, yes, you can have this beach vacation. This is us. This is our family, and this is our home, and we’re happy to share that with you. And we have a management company that, that handles everything for us, and they said at least half of the rentals are by things who are renting it because of the accessibility.

And, yeah, you’re making it accessible. For people who need accessibility, it’s, I mean, a huge, I can’t if you were to read that guest book, it would make you cry because the stories that people write in there saying thank you, thank you, thank you, we haven’t had a vacation in 10 years, you know, stuff like that. It, it’s just, it’s, it’s unbelievable and I love the joy. We’ve got a family from New Orleans who’s coming back, um, at the, I think they’re. They’re either coming for Christmas or the week between Christmas and New Year.

I can’t remember, but they’re going to be back at the end of this year. I think it’s their 3rd or 4th time that they’re coming. So it’s a really special family. He has ALS also, and they know we can come there and we can take care of him and everybody’s going to be happy. Yeah, and a win for you and your family financially as well, giving you some additional income to help support you all. What very creative caregivers the most creative people and you are doing, what, what are some of the things that you’re advocating for right now?

Like what’s your, what’s your hot button right now? So really it’s with the Elizabeth Dole Foundation and it’s, it’s getting our, our congressmen and women to go ahead and, and really the VA, it’s getting the VA to implement everything from the Elizabeth Dole Carregiving Act that’s already passed, but it’s also getting our congressmen and women. To take care of some other issues that are out there. There’s, there’s things like caregivers that there’s legacy caregivers in a program for taking care of their veterans that they may be compensated by the VA but that is in flux right now because they changed the rules and the regulations for joining the program.

So they’re afraid that these legacy caregivers may get kicked out, may not be able to receive their compensation anymore, and, and that’s not. Right? So there’s things like that. There’s things like Champ VA, which is the insurance for um the veteran dependents. For example, my daughter, who when she turned 18, she lost her health insurance because the VA will only cover if they are 18 and in school. So, and then they’ll only cover up to age 143, versus most civilian insurance is 26 and whether or not in school doesn’t matter.

So it, she lost her insurance and then it took A lot to get it back. A lot of paperwork, a lot of phone calls, a lot of faxing. To get it back in um in state again. And now she’ll lose it again unless her college can get the form to them saying, hey, yes, she’s graduated high school, but now she’s enrolled in college, please let her back in. So, we’re trying to get some of those things changed, you know, and, and the Elizabeth Dole Foundation also has 4 pillars that they are working towards for the future.

They want to help caregivers. Have a better financial situation, like you said, being able to afford to stay in your home or to be able to afford caregivers who can’t work and they need to understand finances and how to, how to live, how to support their household and their veterans. Financial aspect, the kids, like I said, the hidden, the hidden helpers and being able to support them, mental wellness for caregivers and Just the care ecosystem, which is kind of my personal, that care ecosystem is what helped bring the help to us, being able to get the help in our home.

And that should be available for everybody. I have other, other caregivers of veterans who have come to me and said, I’m not getting anywhere with the VA. And they asked me if I will help them out. I send a letter and make a phone call. And all of a sudden there’s some action. It shouldn’t be that way. It, it shouldn’t be that it takes me to get this involved, but if that’s what it takes right now, then that’s exactly what I’m gonna do because I want everybody to be able to have the help and the care that we have when they’re caring for their veteran.

Is that typical? Like, is that, is that one of your big roles as a, um, Elizabeth Dole care fellow? Or what, what is your role entail for you? What’s amazing about The fellowship is, it can be whatever I want it to be. If I want to be more involved, I can. If I need to take a step back, they’re very understanding of that too. They knew I was traveling a lot this summer. I’m getting my daughter off to college, you know, it’s something that I’ve told them I want to really jump in feet first, starting in September.

Let me get everybody back in school and then I can do more things like Perhaps have a resource table at a VA, you know, conference or, or some kind of expo event and something where I can reach out to more caregivers and connect with the veteran community just to be able to help spread the word that the Elizabeth Dole Foundation is there for you. We want to support you. They can help support emotionally. They can help with financial grants. They can help with. Getting connections to supplies or organizations that can help.

So it’s, it’s been just a tremendous experience so far and I’m looking forward to seeing what else I can do for the next couple of years with my fellowship. Yeah, what a great way to leave a legacy and to take something that You know, maybe was certainly wasn’t on your bucket list of, of doing, but turning into something really positive that’s making a huge impact in your communities and others. Yeah, I had a, a good friend of mine. She also passed away just a few weeks before my dad did.

That was really, really rough. But she told me God was using me for something very powerful with this. She didn’t know what it was when, and this was when Andy was diagnosed and I was completely. out of my mind. And she said, God is using you for something very, very powerful for this. And now I know what it was at the time, you might have wanted to punch her saying that, like, a little bit, you know, I’m like, what are you talking about? But yeah, I learned as I went along and had all of these wins for caregivers and wins just for us that I thought, yeah, this is where my heart is, and this is what Cathy wanted me doing.

This is, this is what she meant. And I, and I feel like this is my calling to some extent. So I have the hands-on help that I needed for my husband. My children are getting older. They don’t need me quite as much. No, they still need mom, but they’re they’re a lot more independent now than they used to be. And it was just something that I said, this is what I wanna do. I want to be able to give back. I wanna be able to help others, and I want them to have that, that same feeling of breathing.

You know, being able to catch your breath and not having to remind yourself to eat or shower, or, you know, any of your basic functions, but to be able to have the ability to focus on yourself or even if it’s just a few minutes a day. Yeah, well said, well said. You, you had said that, you know, once the skilled nursing care was added to your home, you were able to put some more focus back on yourself. You’ve done some immediate You know, big, big trips that have helped you rejuvenate and use your advocacy talents and spend time with your family on a daily basis, Lisa, like, what are, what are these little micro acts of self-care looking like for you so that you can kind of keep going and keep showing up for your husband, your family, and the, and the other caregivers.

Thank you. Uh, a lot of it is taking care of myself. It’s, it’s eating right. It’s working out. It’s, I did go to the chiropractor this morning. Just a, a wellness check-in, just being able to, to do things, have lunch with a friend, you know, read a book. It’s just things like that that I just love. A lot of what I’m, what I’m doing, walking the dog, what else? Cooking dinner for my family and it being not just something out of a microwave bag, you know, things like that that I just, those, those are what really makes me happy.

And then, of course, planning more trips. Yeah, I’m with you. I mean, traveling is certainly my love language and I have a lot of travel coming up this year, which I’m excited about. That’s awesome. Yes, I think it’s because it heightens all the senses. That’s what I’ve decided and like trying new things, like it’s all really, really good for us and we have those kind of everlasting memories. Well, I wrote a journal called the Just For You Daily Self-care Journal. I wrote it with caregivers in mind.

And I’d love to ask you a couple of self-care prompts, Lisa, there’s no wrong answers here. Let’s see, what’s a local attraction that you’ve been meaning to visit but maybe haven’t yet? Something on your local bucket list. You know what, I’m glad you, you reminded me of that honestly. So when the girls and I were in the Keys, We wanted to rent jet skis and your kids had to be 16 to be able to do it and Sarah wasn’t 16 yet. So we said, we live at a beach town, you know, we’re, we’re 45 minutes from the beach.

We’ll do it this summer. She turned 16 last week. We need to go run jet skis. OK. So your daughter’s like my daughter, but I would tell my daughter that and she’ll just make it happen. So, yeah, I need to remind her also. Yeah, they’re, they’re very good at, at instigating those things. What’s some, what’s the last thing you said no to? I think sometimes, you know, we, I know I crave saying yes to last and, and putting more white space in my life, but what’s something you said no to or it’s not the right season for you right now.

So it’s probably going to be, we just came back. From orientation camp for my daughter who’s going to Auburn University and it’s gonna be expensive. And I had to say no to funding her desires to do study abroad. If she wants to do it, I’m all for it. I’ll pay for her passport, but she needs to be the one to earn the money to go on those kind of things. We will help with all of your, you know, bachelor’s degree, we’ve told her all of that, but it’s things like that that I have to draw a line in the sand.

And, you know, I’ve done all of this traveling. That’s absolutely what I want for her. When I was 20 years old, I went to India. It was life changing for me. It just really makes you realize how little we actually need to live and be happy. And I would love for my children to have those experiences, but I’m not going to keep serving them up to them on a silver platter. So the trip to Japan and Korea was on me and it was. Expensive, but that was the last hurrah, and if she wants to do study abroad, I said it’s on you now, boo.

Yeah, yeah, yes. We can’t do it all and you’ve got your own retirement and things to plan for as well, so. Yeah, makes sense. And I agree with what you’re saying too. It’s good. I think it’ll mean more if she, if she figures out how to earn it herself too, um, in that, in that respect. Well, let’s see, I got one more question for you. What, what self-care wisdom, now that you’ve got all this wisdom, Lisa, what self-care wisdom would you share with a friend who may you might see the signs of burnout and whether it’s caregiving burnout or some other kind of.

So they’re on the road to burnout. What kind of wisdom are you giving them? Shared it with a friend last night. She is absolutely nearing burnout. It’s not caregiving, but it’s with her job. And I was on the phone with her last night and I said, you have to speak up. You have to advocate for yourself because your company is just going to continue to push and push and push and it’s no sweat off of their backs if they think you’re just gonna keep taking it. So, you know, she’s working 60 to 70 hours a week and not being compensated for that. Yeah.

And she’s afraid to advocate for herself. And I said, Why? Why would you be afraid of that? You are clearly indispensable to them because there’s other people who do what you do that are sitting around twiddling their thumbs and they keep going to you with, Hey, one more thing, hey, one more thing, hey, one more thing. So it’s happening. So where you’re potentially enabling. to keep happening. That’s right and it’ll keep happening until you say something. So that, that was my advice to her is is speak up and advocate for yourself. Nice.

Well, yeah, there’s lots of different ways you can advocate in big ways. You can advocate in small ways. Is there anything, Lisa, that you wish that we talked about, anything else you’d like to add or parting words of wisdom for caregivers out there? Oh gosh. Maybe resources that we haven’t talked about or a place that you wanted to connect them to. Definitely, if they are a military caregiver to get in touch with the Elizabeth Dole Foundation. They’re there for all military caregivers. It’s not just the fellows that are in it.

We are the face of the Elizabeth Dole Foundation, but they are there for any military caregiver. For those caregivers that are not Connected with the military in any way. I, I would encourage them. I’ve looked at your, your blog and your website has just some tremendous resources that are on there, just some really great things to click on. In fact, I clicked on one of them recently that I didn’t even know we had in our state. And I was like, well, would you look at that? I had no idea.

And I thought that’s really good for me to know. For the future, because even though I am a military caregiver, I did not serve in the military myself. So that means when it comes time for when I need care, the VA is not going to be there for me. So it’s really good to know what is out there and your website and your blog are really good ways to get that information to know what’s available in the area to help people out. Oh, I appreciate that. You know, it’s been a labor of love over over 10 years of finding things.

I’m learning things every day by having these conversations with other caregivers. I find it, I try to put it in places where it’s more accessible for folks and so people are listening and you’re seeing a resource that’s not out there that maybe should be included, I definitely. Definitely want to learn about that. Well, how do people stay in touch with you, Lisa? How do they find more information maybe about your beach condo, the Elizabeth Dole Foundation? What are some of the, the links there and stuff that we can point people toward?

Sure. So we’ve got the Elizabeth Dole Foundation, I believe it’s .org. OK. We’ve got my personal email is Lisa hiddenhero@gmail.com. OK. And then for the beach condo, it is through Beach Getaways is the management company, and it’s in a building called the Oasis at Orange Beach, Unit 803. OK. I’ve got a Facebook page for it also. So if you um if you type in on Facebook, the Oasis and put in their wheelchair accessible, that’s gonna be the one that comes up because it’s the only one in the building that is.

It’s the only one in Orange Beach that is. Wow. We’re, we’re getting a link to all of those things. We put, we’ll put together the show notes, we’ll share all of the links that you, that you have, appreciate your sharing your journey with me today, putting the resources out there, making the lives hopefully of people listening just a little bit easier, especially if you’re a military caregiver. I encourage you to keep traveling. I encourage you to keep doing your micro acts of self-care, and I’m happy to be your self-care cheerleader to continue on this journey that is still going on, Lisa for you. Awesome.

I love it. Yeah, I, I tell people I’m, I’m no longer on duty like I was, but I’m always on call. So for 14 years, I’ve been the one and it is going on, it, it is. You know, it, it, it does take a toll, but I am still able to find beauty and grace and joy every single day. And I’m happy that my husband is still here because, like I said, 14 years ago, I was absolutely devastated and thought he wouldn’t be. So I’m thrilled he still is.

Amazing, amazing. Thank you so much, Lisa. Thank you so much, Elizabeth. It was great talking with you. You too.

If you’re a fan of this Happy Healthy Caregiver podcast, then you’re gonna love Confessions of a Reluctant Caregiver podcast, which is also part of the whole Care Network family. Join sisters JJ and Natalie, who offer a candid, unfiltered space to confess the good, the bad, and the ugly. of being a caregiver. From heartfelt confessions to insightful guest interviews, they’ve got it covered. You’ll laugh, cry, and everything in between. Tune into the Confessions of a Reluctant podcast on your favorite podcast platform or visit confessionso a Reluctant Caregiver.com.

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