BTM55-Supporting Military and Veteran Caregivers

Welcome to Episode 55 of Behind The Mission, a show that sparks conversation with PsychArmor trusted partners and educational experts.

My name is Duane France, and each week I'll be having conversations with podcast guests that will equip you with tools and resources to effectively engage with and support military service members, Veterans and their families. Find the show on all the podcast players by going to www.psycharmor.org/podcast.

Thanks again for joining us on Behind The Mission. Our work and mission are supported by generous partnerships and sponsors, who also believe that education changes lives. This episode is brought to you by PsychArmor, the premier education and learning ecosystem, specializing in military cultural content. PsychArmor offers an online e-learning laboratory that's free to individual learners as well as custom training options for organizations. You can find more PsychArmor at www.psycharmor.org.

On today's episode, I'm having a conversation with Dr. Roxana Delgado, Ph.D. Dr. Delgado is a health scientist and assistant professor at the University of Texas, the Elizabeth Dole Foundation Research Advisor for the Campaign for Inclusive care and one of the investigators at the VA Elizabeth Dole Center of Excellence for Veterans and Caregiver Research.

Dr. Delgado developed the Military and Veteran Caregiver Portfolio, a research platform that addresses the short and long-term health-related outcomes of caregivers of wounded ill, and injured service members and Veterans. Dr. Delgado's professional experience was inspired by her firsthand personal experience as the wife of a combat-wounded Veteran and purple heart recipient.

You can find out more about Dr. Delgado by checking out her bio in our show notes. Let's get into my conversation with her and come back afterward to talk about some of the key points.

DUANE: You spent much of the recent part of your life supporting wounded ill and injured Veterans, as well as caregivers that support them. I can't imagine anyone doing work in the caregiver space that's not familiar with your work and your story, but many might not be familiar in the wider Veteran support space, about how you came to do what you're doing. Like many of us, you came to this work through the lived experience as a military spouse and as a caregiver, and then into what you're doing today.

ROXANA: Thank you so much. Thank you, you're right. I was a military spouse for, almost a decade and my husband was combat wounded in 2009. That just changed my entire life. I was facing this crossroad of now he's been medically evacuated. He sustained a moderate, traumatic brain injury among other, injuries.

And he was sent home for treatment and rehab. He spent almost three years in a rehab center. I was a full-time caregiver to him. And at that time I was in my Ph.D. So I was already a researcher working with the Department of Defense as a contractor when all these happened and I thought, victory is deploying for the third time.

He's going to be gone for almost 15 months. So this is my chance to do my Ph.D. as I'm starting the Ph.D., he was medevaced during that first semester, that first week of the first year of my graduate school. And at that time, I remember thinking to myself, I could easily stop and hold my life and just take care of him.

But at that moment, I also thought about, how much I can do with a Ph.D. if I'm able to press on, push through, go forward and do everything. It was not easy. Nothing in life comes easy, but, I was able to finish my Ph.D. while Victor was being cared for by the army. I was a full-time caregiver at that time for him.

And in 2013 is when I completed my degree and continue working in research. But this time I decided to change the entire scope of my work to be working mostly with wounded, ill, and injured. And also their family caregivers. I'll tell you that, you know, that moment comes in an instant.

Victor was wounded on June 29th, 2009, and I received the call around five in the morning. It's usually those first words that they say, what are you doing? Are you driving? They ask questions. and When they knew I was in a safe place, I was in a hotel, actually was working at that time in Fort Carson, we were ready to start collecting data for a study.

And, I was getting ready and I was woken up by that call. And basically, it's we regret to inform you that your husband was wounded in action. And then after that, you don't hear anything. So it's as if time passes. And I have heard this with other caregivers that we share, about that moment.

And I remember the air getting really thick and I said, nothing moves around me. it just takes us a shock. But in my case, I remember thinking and reflecting and really being mostly shocked, but thinking, how can I use this for purpose, life purpose.

DUANE: And I think that what you said about it happening in an instant, and it's an unexpected instant as a military spouse. As a service member myself, we knew that it's a possibility, but it goes from a possibility to a definite thing immediately. As you were talking, I was thinking I was deployed in June of 2009. My wife was, she was probably 10 miles away from you because we're stationed at Fort Carson.

So at that moment, like it literally could have been me. If I was catastrophically wounded ill and injured and, thankfully I was not, I can't think of a, I don't want to say necessarily random, but 10 miles apart, one spouse got the story of their deployed service member and it changed their life forever and another didn’t.

ROXANA: And I tell you, I still remember the place that I was sitting down when at nine in the morning, because I excused myself that day from being active with groups and everything, and being just glued to my phone. And at nine in the morning, I still remembered the exact corner with seating, waiting for any additional information they could give from Carson.

And I think that's why it's so important on the work that we do. For me, it's personal, For me, been there, done that. I know what it is to get that call. I know how we feel that first hour and then that first week and the first couple of months.

Victor was not medically evacuated home until almost two months later. He spent some time in Landstuhl in Germany. They ran so many diagnostics and they left him there for almost a month, to see they have the best technology at that time. And, now we have great technology, here in the states and Walter Reed and the National Intrepid Center of Excellence (NICoE).

But back then, they left him there for a whole month to see what the prognosis was and if he was able to go back to Iraq, but unfortunately he was not. I don't want to call it disabled at that time, but he was not really ready.

He needed it. He was having seizures. He was having mini-strokes. He was not being coherent. He had the MRI that showed circulation in his brain. So they said, there's no way he can go back to, Iraq. So he was medically evaluated, for rehab. And like I said, he's spent three years in a neuro rehab center.

DUANE: I think a really compelling part about your story is, as you said, being a caregiver. My wife will tell you this, just being a spouse, being a military spouse is a full-time job. Being a caregiver for someone who has catastrophically wounded ill or injured is a full-time job. But you decided at that moment that this was a point in which it's not just my experience, but I need to continue my educational journey and put myself in a place where there are other spouses getting these calls that, that I know that I'm not the only one. And we're going to need to really study this

ROXANA: Absolutely. And at that time, not many people were talking about caregiving in the military. I remember Victor being in the wider concision battalion and there was this town hall meeting and I was one of, probably the only two spouses that was showed up. And, back in the day, at that time, at the end of 2009, beginning of 2010, I remember talking to the commander.

I said, “Where are these spouses? Where are they? Were they home?” and he said, “Many of them have left.”

And I remember back then, I was so naive about caregiving. I didn't know anything about it. The most I could relate to caregiving was my grandfather that care for my grandmother for many years, for three decades.

But it’s not something that we tend to talk about or anything, and it was not military-related. And you're not supposed to be accurate basically. When you're young, you're naive. I remember talking to the commander and I said, “Is it allowed, or is it possible that we start calling them and inviting them maybe for coffee time or a support group?”

So that was my first encounter with caregivers. It started as a small support group. And, after a year we have 40 caregivers coming in every week and then it was just beautiful to work with them. That was the moment that I started to see and connect with other caregivers. Because our journeys are so different, but at the same time, we have this connection that we understand what struggles are, what challenges are.

We know that we have to be resilient. There's no question about it. The question is how can we become resilient? And there's no better way to be resilient than creating community, finding good resources, making sure that things are in place for us to be stronger because you have to be strong to be able to overcome the challenges that come with caregiving.

And that's how basically everything might love, understanding better the community, being there for the community, finding your resources, and using anything in my reach to be able to bring it together and make the caregiver's life better. That's the whole idea behind it. I need to push through. I need to finish this degree. I need to change my research topics and really find ways to uncover those hidden, basically things and challenges and things that are happening in the caregiver community.

DUANE: I think that even that lived experience in the beginning, as you said, you were working towards your degree at that time, but as you said, just like every wound is different. One spouse may have a Veteran who's wounded burned over 80% of their body or another may have an amputee where someone else may be like Victor, having multiple Traumatic Brain Injuries may not be necessarily visible, but still, very critical.

And those take three different actual care givings, but you're all still doing it on your own and feeling like the burden. And so there are things that are common among them. And this is something that's really come out from your research. You recently published the results of your research, on the intersection of the mental health of caregivers, themselves and caregiving. A lot of the conversation we've been having over the past 10 or 15 years, once we started talking, was about the caregiver as it relates to the Veteran. But you're really the first one, that I've seen, to talk about the caregiver themselves?

Because if we don't support them, then the caregiver of the veteran or maybe another family member, can really be vulnerable.

ROXANA: And the reality is there's not a straight shot or any guidance that you're given when you become a caregiver, but many caregivers, say they focus on their Veterans.

Our research is about the caregiver. We're looking at the long-term outcomes of caregiving. We're following caregivers. We're asking them the critical questions that sometimes are a bit painful to talk about. In 2015, when I became an Elizabeth Dole Foundation Fellow, Senator Dole went to the VA symposium and she stood up and we were all watching live. And she said, “Suicide among caregivers is the white elephant in the room, and nobody wants to talk about it.”

And because there's some, at that time, there were some programs, but most of the programs were all directed to the Veterans and the caregivers were invited by coincidence. But there were no real programs directed specifically for the caregiver and tend to the needs of the caregivers. And at that time I remember I was already working on my research. And I remember looking at my colleague who happens to be a gold star wife, my colleague, Dr Peacock. We worked very close together. We have been working together for over 10 years. I remember we both looked at each other, and said let's do it. Let's just find a way to quantify suicidal ideation and caregivers.

And that's exactly what we set for, back in 2016. And that's the publication that you're referring to and I'll tell you for us was eye opening. It was difficult. It's one of those things that, yes, I'm a researcher and I have the hat, but I just happened to be also a caregiver in having both that dual hat is very beneficial because I get to be an insider and understand,I have to set aside some of my biases, of course, as a researcher,but when we were approaching that data at certain points, we have to stop and really take a break because he was heart wrenching looking at some of the experience as some caregivers and that study what the final results and the outcome of the studies show the predictors of suicidal ideation in different pockets of caregivers.

So we were able to find basically three distinct groups based on their risk for suicidal ideation. And we found that , those who are a high risk of either considering or attempting suicide were those caring for Veterans with Traumatic Brain Injuries and mental health, with the highest being those caring for a Veteran with suicudial thoughts.

When you think about the Veterans, many of them have suicidal thoughts. Many of these caregivers are caring for Veterans with mental health conditions. So it was very eye opening. I think that's what when we publish ARP and some other organizations reaching out right away because it's the first study looking at suicidality in military and Veterans caregivers.

DUANE: I think I had a first Sergeant who always used to say, “Don't ask scary questions if you don't want scary answers.” And this is where you had to ask scary questions because it's better to have the ugly truth than the beautiful lie. And the beautiful lie is the caregiver is this strong, resilient person that's caring for their Veteran. Whereas the truth is we understand how suicidal ideation can grow among groups and things like that. I think that's really important. It's a brave step. It's a bold step to say as Senator Dole did, this is the elephant in the room to just say, no, we're going to ask these specific questions, knowing that we're going to get these ugly answers and knowing that it's going to hurt us because it's happening, but we need to bring the light to it.

ROXANA: Absolutely. And I think like you said is the ugly truth, but somebody has to ask the questions. We are not going to change how things are if we don't wind up breaking up to ask the questions, And I'll tell you, it took us a quite a while to get that approvals from the regulatory agencies and the IRB, the institutional review board because it comes with the company nature that, you asked about suicidal ideation, what are you going to do next?

And, we had a mitigation plan in place. In part of it, you will be very happy to know we worked with PsychArmor. We engage some people from PsychArmor and some of the modules that you had at that time to help caregivers really understand the burden that comes with caregiving. PsychArmor was a great resource at that time for the study. That's a mitigation strategy also for the questions that we were asking.

DUANE: And I think that's a critical step for many people asking the question, then it's what do I do if I get that answer? and you'd mentioned Senator Dole. You've mentioned that you were a dole fellow. We were grateful to highlight the work of the Elizabeth Dole Foundation, when we had Steve Schwab on the podcast back in Episode 14.

But I'd like to hear about the organization from your perspective. Having been a Dole fellow and now a research advisor for the Dole Foundation. They've really taken on a role as the national leader in the conversation around Military and Veteran Families.

DUANE: I honestly don't think we will be talking about caregiving the way the nation has been talking about caregiving and even internationally if not because of the Dole Foundation. The Elizabeth Dole Foundation started, and of course I don't know those first initials as any insider. It's basically what I have seen, what I have experienced. Like you said, as a fellow and as one of the caregivers that gets the benefits from all the services they provide. It started with the idea of creating that conversation, creating a national discussion and bringing awareness, and that's why they commissioned the largest study of Military and Veteran Caregivers.

And I think that was basically what uncovered the rest of the services that they have. But I'll tell you, I don't know that the caregivers would have the voices that we have today. The power of the information that we have today, the number of programs and services. And I don't mean just from the Dole Foundation, but all the programs and services provided by so many organizations. Engaging corporate America, engaging big corporations into these endeavors.

I don't think you would have happened without the Elizabeth Dole Foundation. And I am deeply grateful. I started as a fellow. I very much enjoy those two years where we get trained about if you want to change something, they train you on the best way to do it. They connect you with the people in your state. In my case, I’m in Texas. So they connected me with legislators that they knew could do something, to change policies, to improve systems, to bring awareness as well, all the A to Z of advocacy.

But then beyond that, they were critical. They were instrumental in my career because when that I did my postdoctoral work here at UT Health, in San Antonio and the School of Medicine. And as I was transitioning into a faculty position, I'm now an assistant professor, they were incredibly supportive. They sent a letter to the university to my Dean of the school, letting him know about my role, not only as a researcher, but also as a caregiver. And they supported me throughout my career when I was already established as a faculty member. That's when I was invited to work with them mostly on, on the Campaign for Inclusive Care, as a research advisor and we're running that program where basically we're evaluating the Campaign for Inclusive Care and the implementation at a national level throughout the VA, hospitals and facilities.

So it's, my role at the Dole Foundation has evolved from 2015, all the way through now, but I have seen it with different hats as a researcher, my career, but also as a caregiver. They pour their hearts into everything they do.

They have been incredibly graceful and loving and supportive of the community. And I think that, like I said, I don't think we would be having this conversation at a national international level, the way that we have been doing it, if it's not because of them and all the efforts that they have brought to light.

DUANE: One of the things that I've really valued about the Dole Foundation is yes, it's having these national conversations, strategic level conversations on what is the future of caregiving 10-15 years. How can we implement change in large systems? Like the VA, like through the Campaign for Inclusive Care. They also impact individual lives at the personal level because they help caregivers know that you're not alone in this.

When we talk about this lived experience, it started because Senator Elizabeth Dole was a caregiver for Senator Bob Dole, a Veteran himself. And so she was like, I know I'm not the only one you were in the warrior transition battalion saying, I know I'm not the only. Where are the other spouses? She had a larger platform, arguably, but it's the same thing. When you started your event that grew into 40 spouses, it's to let caregivers know that they're not alone in this.

ROXANA:Absolutely. They're not alone. There's nothing more beautiful than creating community. There's such a powerful force when we all come together. I tell you, I just love Senator Dole. She has my heart. She has been incredible, especially to me with too many caregivers, but she's a very special leader.

I remember at the beginning of my fellowship, I was a fellow very excited about being in that position, all that. And I sent her a letter. And she picked up the phone and called. So that's the person that she is. I tell you that every time she gets a letter, she calls the person and so many of us have incredible stories about her.

She has been doing this out of her heart. She didn't have to. She's a very successful national leader. Well-recognized in the world. She was retired. She really didn't have to do this but she chose to do it. She chose to give us a voice and she chose to train this to really follow her legacy.

I feel that she is leaving a tremendous legacy in our community. And I just feel so inspired that I'm like, I can not let her down. Anything that I can do, to continue the work, to continue making caregivers feel loved and supported and empowered. I think that one thing that is happening very much in our communities is isolation. It's a feeling of loneliness and a part of the publication talks about the loss of self.

They become so absorbed by the caregiving role that they're forgetting that they're an individual. It's okay to dream. It's okay to have your own goals. It's okay to have enjoyed a little of everything. Hopefully caregivers can see that not only the Dole Foundation, but other organizations are coming together, as clinicians, to really bring the programs and the services that they need to be empowered and continue their life.

I always tell caregivers it’s ok to dream. Even if you had to put your goals on hold for a while, it's okay to come back and continue your life. My hope is that caregivers feel not only loved and get support, but also feel the empowerment to grow and continue their life in a very successful way.

DUANE: Not only is it okay to dream, it's necessary to dream. It's necessary to have that goal. Roxana, I really appreciate the time that you've spent. I'm definitely going to make sure that the link to the publication is in the show notes. If people wanted to find out more about caregivers support, how would you recommend that they do that?

ROXANA: I think the best is for them to go to www.hiddenheroes.org. This organization is the website for the Dole Foundation. They're going to find the largest national directory of caregiver services. I'm so grateful you're gonna add the publication. We purposely did open source publications so that anybody can access that without having to pay to any journal.

And I am grateful for your time and grace and kindness at your site.

DUANE: Well,I appreciate that. Thank you for coming on the show.

ROXANA: Thank you so much.

Once again, we would like to thank this week's sponsor, PsychArmor. PsychArmor is the premier education and learning ecosystem specializing in military culture content. PsychArmor offers an online e-learning laboratory that's free to individual learners as well as custom training options for organizations. You can find out more by going to www.psycharmor.org.

If you are a regular listener to the show, then you know that we've discussed the topic of caregiving and caregivers for wounded, ill and injured Veterans before. In my discussion with Dr. Delgado, I mentioned the episode with Steve Schwab. And we specifically talked about caregivers in Episode 34 with Melissa Comeau. And talked about the Campaign for Inclusive Care, which Dr. Delgado mentioned in our conversation with Leah Christensen, Episode 38 talking about the importance of military spouses and children is inevitable when it is talking about service members and Veterans and talking about caregivers is inevitable when we're talking about emerging from the longest period of sustained conflict in our nation's history.

The one point that consistently comes up, however, is what Dr. Delgado said. Not that long ago, the common understanding of the term caregiver was support that was given to our older family members. She said that when she thought of the term caregiver, she thought of her grandfather who was a caregiver for her grandmother for a number of years. Again, if you listen to the episode with Melissa Comeau, you heard me realize that I hadn't considered myself a caregiver for my Vietnam Veteran father. Even though we moved him in with us to keep him from experiencing a period of homelessness, helped them apply for and finally receive his VA disability 48 years after he was in Vietnam, and took him to every significant VA appointment he had both locally and at the main hospital a hour and a half away. And that's another example of how caregivers come in unexpected ways in all shapes and sizes. Mine happened gradually over a number of years and after my military career was over.

Dr. Delgado's and many spouses became caregivers in an instant unexpectedly, heralded by a phone call at five in the morning. She woke up that morning, thinking about the research interview she was going to conduct that day.

You may see being a caregiver coming if you have a loved one with chronic health conditions. You don't see it coming when your spouse is hail hardy and half a world away. 25 year olds or even 19 year olds don't think about the possibility that their entire lives will change in an instant.

As I mentioned in the episode, you may think about it theoretically. Any service member with a family that deploys at least has a conversation about wills and things that might happen if they're wounded or killed, but it's theoretical. There's a part of you in the back of your mind, that knows that it's possible, but not really likely. There's a saying. Be kind. You never know what someone else is going through. This is especially true for caregivers as their experience is so unique that many of us don't have a frame of reference for understanding. Even, I don't have a frame of reference for Dr. Delgado's experience as my father was mostly autonomous and eventually able to live independently again.

I wasn't a caregiver for someone who required constant support because of their catastrophic injuries. If there's a point that I'd like to drive home, it's that we need to understand more and support more. Those who find themselves caring for Veterans day in and day out. They are also co-signers for that blank check that you often hear folks talk about.

The other point that I'd like to make is that you should never underestimate the power of persistence. A favorite quote of mine often attributed to Margaret Mead is “Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed. It's the only thing that ever has.” I often amend that quote to say that we should include thoughtful, committed, organized citizens. And that's certainly the case here.

But I'm referring to both Dr. Delgado's individual persistence of continuing her educational efforts while being a caregiver and the persistence of the group of committed citizens that have made the Elizabeth Dole Foundation, a leading voice in the support of caregiving, spouses and children.

The Dole Foundation is a great organization. And Senator Elizabeth Dole is an amazing leader, but national leaders take up causes and issues all the time, and they don't always develop into a worldwide advocacy group that has influence at both the operational and strategic levels. The impact of the Dole Foundation has felt behind the closed doors in an individual Veterans home. When that Veterans' caregiver feels a momentary relief when they realize that they're not alone in the work that they're doing.

And the impact of the foundation has been felt in the halls of Congress and the offices of the White House. This is the power of the right leader, bringing the right people together to make a significant impact. This is an example of an organization that knows its purpose and where it fits in with the wide range of other support required for service members, Veterans, and their families. And when I'm singing the praises of the Dole Foundation, the point that I'm really trying to make is that persistence is required to have a lot of conversations with a lot of people about a single thing, whatever that thing is. Financial support for lower enlisted military families. The value of nature and increasing wellness and mental health employment, or suicide prevention.

You may feel like you're yelling into an empty room, but there are a lot of empty rooms where a lot of other people are yelling about the same thing. Find each other, then find the organization that seems to be doing something. Get the attention of the national leader or heck become the national leader yourself. Be thoughtful, be committed, get organized, then go change the world.

For this week's PsychArmor resource of the week, I'd like to share the recently released PsychArmor course, VA S.A.V.E. Preventing Caregiver Suicide. Specifically related to Dr. Delgado's research that indicates that Military and Veteran caregivers are at greater risk of their own suicidal ideation and behavior. PsychArmor is partnered with the Department of Veterans Affairs to bring you this course specifically for caregivers. After taking this course, you will develop an understanding of the increased risk for suicide we see in Military and Veteran caregivers.

Identify the signs of an at-risk Veteran caregiver and know the steps that you can take to help a Veteran caregiver. You can check out the course by going through a link in the show notes.