First Person: My life as a military caregiver.

Lauren Warner
November 27, 2018 - 11:10 am

Photo courtesy of Leigh G Photography

No two caregiver stories are the same.  Here's mine.

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I met my husband after his deployment.

We met on active duty.  I was Public Affairs for the unit he was assigned to. Our dating experience was fairly standard: go out on the weekends, play video games, watch The League (I was trying to get him into Fantasy Football). But it wasn't until a few months into our relationship that I started noticing things that worried me. We would be sitting in the barracks having a conversation and his face would just go blank. Or during a Netflix binge session, he would fall asleep and have intense nightmares.

It was enough for me to encourage him to talk to the doctors. They realized that he hadn't been properly diagnosed or cared for after sustaining a blast injury on deployment two years earlier. They referred him to the Traumatic Brain Injury Clinic at Fort Belvoir where he spent a few months undergoing a variety of therapies including art, yoga, talk. For a while, it seemed like he was going to be fine. 

Fast forward through countless misdiagnoses, ill-prescribed medications, and doctors experimenting with exposure therapy ...to now. He's not fine. But we're still here.

In the midst of this tumultuous experience in 2016, we got married. Like everything else in a relationship involving a TBI and PTSD, we had to adjust. From the number of photos we took, to the length of the ceremony, and lighting used during the reception, I tailored the wedding in attempts to decrease his stress. Even with the extra detail work, it was a wonderful weekend. 

Most people will say they feel like they've known their spouses for a lifetime. Let me tell you, I feel like it's been a number of lifetimes for us.

Just in the past year, we've dealt with two transitions from the military to the civilian world, the nuances of a medical retirement, adjusted to new timelines, therapy schedules, jobs, and schooling, it has been an endless cycle of change. Without our support system, we certainly would not have made it through in one piece. 

Photo courtesy of Lauren Warner

Being a caregiver is like building IKEA furniture-- it doesn't make much sense with or without instructions.

For most military couples, the day that changes their lives is the day the injury occurs, but I missed that one. Instead, our lives began changing when he began treatment. 

Now here we are, four years later, both transitioned to the civilian world and realizing that this path is one in which making plans and expectations doesn't always work. 

Being a caregiver means that your number one priority is your wounded warrior. This means planning (or not-planning) life around trips to the VA, adjusting travel plans around traffic in hopes of avoiding seizures triggered by horns honking, or accepting that the paper due for your master's program might have to get turned in late because a particularly bad episode requires your full attention. 

For me, it also meant getting out of the military early, a total 180 from my plan. Before my husband began treatment, I submitted my packet, passed the board to go to Officer Candidate School, and was well on my way to making the Army my career. Just a few weeks later, I was late, missing work consistently, and unable to leave my husband home alone due to unpredictable seizures.

This does not bode well for a soldier in the military and it became clear that even with a few supportive leaders in the unit, being a caregiver and soldier at the same time was impossible. After struggling to play both roles for a year, I finally submitted another packet, this one leading to an early (yet still honorable) discharge. 

When you become a caregiver, you might notice some changes to your social circle along the way. Not everyone understands that your schedule and time are not your own and the invitations start to drop off.

You might start to feel isolated, spending much of your time on an anti-schedule-- late nights monitoring seizures and catching 2-3 hours of sleep when you get a chance. It's hard to be an extrovert who can no longer make it to every event on your social calendar. Its also been a blessing, highlighting the amazing people I do have in my tribe.

That lack of sleep I mentioned starts to catch up to you as does everything else; taking on caregiving and supporting someone else, no matter how much you love them, is still emotionally draining. Lack of sleep, weight gain, depression, all pretty stereotypical in the caregiver world. 

The title of caregiver actually means advocate, counselor, chauffeur, scheduler, nurse, physical and occupational therapist, professional note taker, cheerleader, coach, and secretary (depending upon the nature of your wounded warrior's injury, I'm sure there are a couple hundred more jobs and skills you could add to the list). 

Four years in, though, and I'm finally developing a system. It's not much of one, but its what we've got. 

Photo courtesy of Lauren Warner

When you become a caregiver, who takes care of you?

There's a commonality among companies wanting to hire veterans; they talk about how the struggle to reach their market and its mainly because they don't meet them where they're at.

Well, the same goes for caregivers. I've sat in countless waiting rooms, met with numerous doctors...but the only way I ever found any of the caregiver programs was after hours of combing through Google search pages and chance encounters with spouses who belonged to these organizations.

When I first began my journey as a caregiver, I was alone. No one tells you about the resources available, how to ask for help, or even who to ask. Certainly not the clinics on military installations who diagnose your spouse with these life-changing acronyms. 

It took me two years to even get connected with a single caregiver support organization. Once in, I learned that as great as many of them are for social outings, finding the support, advocacy and well-vetted resources you actually need is still an uphill battle.

Being a post-9/11 caregiver is worlds apart from what the rest of the world envisions as caregiving. Instead of caring for your parents like the majority of pre-9/11 and civilian caregivers, we in the post-9/11 community are more likely to be spouses and friends.  

Those spouses are suddenly left finding ways to be the sole income provider, tackling parenting solo or completely unable to work because of the demands of caregiving. You can burn out very quickly without a support system. The financial, physical and emotional burdens take a toll on the hidden hero population.

There are over one hundred programs marketed as caregiver support, but a number of the programs that claim to serve the caregiver community only do so incidentally. In truth, they primarily target the wounded warriors, only providing a caregiver support program as a secondary service.

I'm still coming across "new" programs that existed long before I joined the caregiver world. I wonder, where these groups do their outreach, and who are they helping? If I don't know about them, how many other caregivers are clueless about their existence?

Photo courtesy of Lauren Warner

Everyone in the wounded warrior/caregiver community has a unique experience. No one experience is better, easier, worse or harder than yours. 

This is my life as a caregiver.

Some days are good, some are bad, some are awful. But the most important thing is that I'm not alone, and my husband knows that he's not either.

If it weren't for the network and support system I've developed through Dog Tag Bakery, I would still be as lost as I was four years ago.

I know for sure that I don't want that for anyone else. Caregiving can be an isolating raft to land on, so don't be afraid to reach out for help-- there's someone there to throw you a life vest. 

If you're a caregiver and you need help or want to share your story, contact me at lauren@connectingvets.com.

For more information or caregiving resources, click here.