Redefining a Life and Career to Tend to the Ambiguous Loss of Caring for Someone with a Traumatic Brain Injury

Caring Conversation — Roxana Delgado

Dr. Roxana Delgado is a health scientist, national advocate, and the wife of Sergeant First Class retired Victor L. Medina, MRC, CRC, a three times combat wounded veteran and Purple Heart Recipient. Dr. Delgado uses her personal experiences to impact policy on traumatic brain injuries (TBIs) in the military healthcare system, conducting support groups and talks to help ensure the quality of life of veterans, civilians, and children with brain injury and their caregivers.

Rajiv: What is your caregiving experience, right now and in the past?

Roxana: Well, my grandfather was a caregiver for 40 years. My grandmother had a stroke at the age of 52 and he cared for her for many, many years. When he became ill, I became his caregiver, right after my grandmother died. But believe it or not, at that time, I really didn’t consider myself a caregiver. It wasn’t until I started caring for my husband that I really began to feel that way.

June 29, 2009. That’s when I received a call from Iraq that my husband had been wounded in action. He was transported to Landstuhl Army Medical Center where he received a series of scans and diagnostics. We learned that he’d sustained a moderate traumatic brain injury (TBI) with three bleeding areas in the brain. He was medically evacuated to the U.S. via a C130, one of those huge airplane hospitals. When I finally saw him outside of the emergency room, he seemed completely different. They way he spoke, his smile. They sat me down and said that he was going to be assigned to the Wounded Warriors’ Battalion, which takes care of veterans who have been wounded in action. And from now on, they said, his only purpose would be to take care of himself; to go to medical appointments, to ensure that he’s following all the doctor’s directives. I didn’t realize that what was happening was this: I was becoming a caregiver. I was going to take on everything that my husband suddenly couldn’t do. There was a time when he was seeing 23 specialists post-injury. It was hard to manage our time in any other way than that which served him. So it’s clear to me, now, that even in those very beginning moments post-injury, I was a caregiver. But at the time, I didn’t feel like a caregiver; I was just the supportive wife.

I was in my first semester of a doctoral program when all of this first happened. I was faced with two options: put school on hold, or push through. I was also working full time as a research contractor with the Department of Defense. I’d already had a career, but with my husband gone for 15 months, as it were, I felt it a good time to start with this PhD opportunity. Then that changed: two months later I still had a full time job, I was starting school, and my husband was back from Iraq in need of near-24/7 care. He couldn’t tie his own shoes; his memory was foggy. He couldn’t concentrate on anything. Sometimes, it felt like my husband had left for war, and a 10 year old boy came back in his place. He was assigned to a neuro rehab center … I’d drop him off at 8:00 in the morning and picked him up at 5:00 pm. During that time he did rehab activities, things to bring back his cognitive abilities. I had to go in to get him at 5 because, like a child who leaves school at the end of the day, they wouldn’t release him alone.

A few months into all of this, I called my friend at school and asked if she could take notes for me in a class I was going to miss. She said: “Roxana, you’re going to suffer from compassion fatigue, you’re going to burn out,  if you don’t start taking care of yourself very soon.” Little did I know, she was a compassion fatigue educator. She invited me for coffee later that week; we sat down and talked all about how I was caregiving for my husband. That was the first time it sunk in that I was doing this thing for someone else, I just hadn’t been able to give it a name. I was experiencing the sadness, the guilt, the sleep deprivation. All of it. I just needed someone to help me understand the process that I was going through.

I started researching a lot about brain injuries in general, trying to understand what it was exactly he was going through. Living with someone with a brain injury was so different than what you read in a research paper. That’s when I came across the notion of “ambiguous loss”, which helped me understand that there is no instantaneous healing process; that what I was feeling was honest and normal, and I wasn’t being selfish. I didn’t have to feel guilt about wanting the old Victor to come back. I still get teary eyed talking about it. But the moment I was able to understand that I was a caregiver … that’s when my personal healing process began. That was roughly 8 years ago now.

I feel very fortunate to have come to that understanding when I did, about 5 or 6 months in. Because moving forward, things don’t really get easier. It all becomes more normal, yes, and it brings great joy to see the person you’re caring for make strides, but things remain difficult. They’re still not the same as before. With me and Victor, there was a time when our relationship felt so altered, I thought we may never resurface the husband and wife reality we’d once known. I found it best to think of myself and to act as Victor’s best friend, in fact. But Victor noticed the change early on. When I explained my position, he said “Oh! No, no, no, no, no”, and committed himself to therapy so that he could get back his independence and live a fulfilled life even after a  TBI.

What is your professional background, your field of expertise?

I have a Bachelor’s in Biology as well as a Master’s in Epidemiology. I was working as a researcher epidemiologist as a contractor with the Department of Defense. Most of the projects I was working on and the research I was doing was around chronic pain and the use of opioids among service members and veterans. I was also looking deeply into post-traumatic stress disorder and traumatic brain injury, researching the effectiveness of alternative and integrative medicine in decreasing the symptoms of those illnesses. So that’s what I was doing before Victor was wounded in 2009. That, of course, is when my interests shifted a bit, and I wanted to focus more on brain injuries and the like.

I graduated in 2013 with a PhD in Interdisciplinary Health Sciences and my dissertation was on the phenomenology of traumatic brain injury in military personnel. My research now focuses on  the impact of caregiving on military caregivers, these young people in their 20s and 30s especially, much like myself at the time, who were thrown into this reality after their loved ones returned home injured. I became very interested in learning about what happens with a lot of the caregivers who many times go from happy, excited, passionate people, to injured and hopeless. That’s when my interest changed and I began conducting support groups. It started with 3 caregivers and made its way up to 40 caregivers who came to speak every Thursday. I’d really begun to feel a commitment and responsibility to better understand this community of people who were suffering, and as far as I could see, not getting the attention they deserved. Some were caring for someone that came home with TBIs or something to that affect, but then there are other traumas, too. We call this polytrauma. Often, not all the sensitivities people come back with are tended to. I decided to do everything possible to develop programs like the support groups, and use the skills I’d garnered in both school and my personal life to make others’ realities better. Everything changed when this happened. The support groups and the like … that all became a part of my process, sure, but to help others on their road to happiness and well being after experiencing what they had … that’s been the most rewarding.

How have your professional skills and perspectives influenced or impacted your caregiving efforts? And vice versa?

My personal and professional lives are pretty inseparable these days, and it’s been that way for almost a decade now. My professional skills, especially as an inherently curious person and researcher, helped so greatly in my personal life when all of this happened with Victor. And clearly, what happened with him impacted my career path in a way I never really anticipated. But it’s been inspiring, and all so very much one part of another part, of another, and so on. It’s all interconnected and, I think, meant to be this way.

I actually co-author a book that is called Caregiver’s Companion (accessible here) which takes into consideration the military culture for caregiving. There’s just so much I feel like I was able to do because of this originally unexpected experience. Certainly, not all was lost, and my personal life continues to positively affect my professional life every day, and vice versa.

As faculty at the School of Medicine, I’m developing a Military and Veteran Caregiver Portfolio of research which focuses on understanding the factors that impact the health and wellbeing in military caregivers. We’re conducting a longitudinal study and identifying the trajectory of health in military caregivers to better inform both existing and new programs.

Along with my husband, I am also the co-founder of TBI Warrior Foundation, which seeks to improve the quality of life of veterans, civilians, and children living with brain injuries as well as their caregivers. We do this through community integration, education, and advancement programs. We’re delivering skills training programs for caregivers to better equip them in their role as they care for a loved one. It’s all about enhancing education and helping guide them as they navigate the caregiving role.

What one piece of advice would you give someone who found themselves in similar caregiving situations?

Don’t forget who you are; don’t lose yourself. It’s so easy to be absorbed by the responsibility of your caregiving, but the second you start forgetting who you are and begin living only like you are an extension of your care recipient, you will need to backtrack.

Also never forget what it is you want to do, or where you want to go in life, even if certain goals are not achievable at the moment. Put them on hold. If you take care of yourself in the same way you take care of your loved one, or whoever it may be, they will see that, and they will do their best on their end, too. Just because someone is ill or has a disability doesn’t mean they are not capable of growth. Of understanding. Of changing their circumstance, even if it is in the most minuscule way.

I’d like to share an anecdote that I think really speaks volumes about my experience, and how things may sometimes appear one way, then surprise you entirely. Victor actually ended up going back to school. He met with the Dean of the school, the director of the rehabilitation counseling program, and he said: I may not pass the GRE if you insist I take it for admittance, but I will not fail once in the program. I’m going to make it work. This school waived all the requirements to get in, and he went back to school. It was sort of miraculous, but as things turned out, it was certainly what was supposed to happen. He graduated three years later, in 2014, with a master’s degree in rehabilitation counseling. Not only did he graduate, he graduated top of his class. Since then, Victor has testified in Congress and the Senate. He worked tirelessly to change one of the policies for treatment of brain injuries in the military, and he was given a Congressional Record on his name for it. He may not be a soldier anymore, but he still feels like he’s fighting for those who are dealing with similar injuries and disabilities.

This injury wasn’t meant to be the end for Victor, much like caregiving turned out to be the beginning of the road for me, in many sense. Resistance to our reality … that would have been an ender for us. Positivity kept that out of view in many ways. Don’t forget about your goals, and always love yourself more than you love your care recipient so that they can get the best of you. You both deserve it.

Interviewed: 7 November 2018, by Rajiv Mehta; edited by Julia Rubano

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