You Belong

Disclaimer: Trigger Warning

As this is the month of the military caregiver, it became more apparent to share an alternate, often unpopular view on caregiving. This isn’t your typical, every day, “day in the life of a caregiver” post involving public interest stories or overly sugared up version of personal experiences meant to inspire on a deeper level. However, it is also not meant to be negative or come across in a way that makes the decision to marry a Veteran sound like a regret.

It’s alternative because it hasn’t been a smooth path, or even an easy one finding where you fit in as a person once you take on this role. To steal the most popular phrase in modern news; “in these unprecedented and uncertain times, you need to know you have somewhere to turn.” This is a cliché, and it’s meant to be because while each story is different and unique to the person living it, one thing is certain, we all don’t know where we were going to be when this all started, or how we will feel from day to day in the constantly changing circumstances that evolve into “the new normal”, whatever day on the calendar that was for each of us.

I am an exception to most of the caregivers I’ve encountered over the years because I do not embrace the title. For the longest time, I associated it with the newest four-letter word in an ever-growing vocabulary through this experience. I’ve had positive, uplifting, and life-changing experiences as a caregiver that I otherwise wouldn’t have been subjected to in my former life, but the same is true on the flip side. Some of my most horrific life experiences have come from being a caregiver. The effort to find my place has wavered over the years because of the negative, but also unforeseen changes in the health status of my Veteran and the comfort often found in self-isolation. However, when the opportunity arises for the promise of positive, inclusive, or proactive solutions for our family, I find myself applying even against my own reservations because the need to feel more comfortable in my daily life can be overwhelming. These experiences can’t be summarized in a single blog, but there’s a sense that many can agree these statements are finding familiarity in your own lives already, even with the outstanding level of implied vagueness.

I began my journey post-injury, which in many circles, means I already have a strike against my credibility. In other circles, it makes me a “new age hero” because I “signed up anyway,” all the more reason I don’t embrace titles. Many days I get my husband’s unit wrong; I’ve even misquoted dates of service because I simply can’t remember. It’s not because I don’t care or that I don’t know, I make mistakes. They aren’t intentional, but often times unforgiven, not by him, but others looking to discredit my journey because they’ve been with their spouse from the beginning, so I can’t possibly know what I’m talking about, hence integrity and credibility under fire again. This particular behavior has always been somewhat amusing to me because we surround ourselves with those fighting memory issues, substantial injuries that affect timelines and manage to sympathize on an unreal level, but are the first to criticize the caregiver for making the same mistake. I’ve never understood it, but I’m sure many of you have seen this for yourself at one point in time or another. If you haven’t, I can sincerely say, I envy you.

As I respond to all this negativity in my own way, I’ve been told that I’m isolating/avoiding or I have secondary PTS, and therefore need to seek assistance in the form of a retreat or personal counseling. This isn’t to invalidate any of my experiences or concerns as a member of this very specific group of people, but to help pull oneself out of a potential for spiraling. While these can be valid escapes in the most transparent and immediate present, the ongoing anxiety or possible repercussions are oftentimes not worth the effort. I live my life by my own standards and by my own comfort level, and as such, I have created enemies that I quite possibly don’t even know because there must be something wrong with me.

I’ve changed my level of participation over the years in various forms within the Veteran community, but the subculture is one that is ever-changing and hard to predict, lending to the ever-expanding skepticism. I say all of these things because I feel that someone can relate, someone else has these same defense mechanisms built by underlying self-preservation, rather than fear or anger. We use the tools we have readily available that have been either self-taught and successful or suggested by well-intended friends/family.

Many of my co-workers have never heard my story because I will be the first to tell you that I am not interesting. I’ve declined for years to step forward, with their support and understanding along the way. I don’t have much to offer of myself because oversharing is frowned upon in my experience. It's either overly applauded or criticized beyond recognition of the original premise. I choose my friends wisely, but choose my words even more cautiously because I’ve learned that some people can relate while others will incessantly question their validity. I can’t win for even trying, so I keep my story to myself.

I’ve stepped forward today not for recognition or a sounding board for complaining, but rather to bring my opinion to the forefront and let anyone else out there know that you don’t have to share your story to feel a part of the community. Notice that the name is Anonymous? Your life and experiences are your own, and not for others to dispute or discount. You don’t have to sit and compare your Veteran’s injuries to feel empowered, and you certainly don’t have to check the preconceived boxes of performance to be the caregiver, the medical community, or even who fellow caregivers have decided you should be, in order to wear that title in public.

In summary, I don’t quantify my life to meet the expectations of others and neither should you.

~Anonymous

It's Our 4 Year Blogiversary!

Did you know that research shows that a short autobiographical storytelling exercise can have a lasting impact on the writer's mental and physical health, even months after the storytelling?

We've always felt strongly about our HTH members being featured to share their stories, their triumphs, their worries, and ultimately successes.

Over the last 4 years, our families have shared incredible stories and most probably thought "If someone reads this and are going through the same thing, I hope it makes a difference in their life," and today as we celebrate 4 years, we know in our hearts that it has.

When we write these stories about our journey, it helps us to find our voice. Sometimes we can't speak what we want to say, but it has a way of coming out beautifully when written, and we're so happy to hit this milestone as a team. Being able to write our stories makes us feel less like a victim and more like a survivor, like a warrior and even a little like a bad-ass!

We're going to keep giving these Warrior families, these hero caregivers and these super-resilient kids a voice. We're going to keep helping our families find peace through their stories and leading the charge into the next chapter of these hero lives.

Stay tuned, we've got another 4 years in the works!

Sarah Daughenbaugh- A mom, A wife, A caregiver & A friend

Disabled Caring for Disabled

As military caregivers, we understand that our military deal with many stressors. As a society, when we usually think about our military, the words uniforms, guns, tanks, deployment, and war come to mind. As an overall view, those are all accurate depictions. However, those close to military members know there is so much more that impacts these military men and women. The military infiltrates every aspect of their lives. Military life is tough physically as well as mentally, and many are left with disabilities related to their combat experiences. That's when parents, siblings, spouses, and children come into being a caregiver for their disabled military loved one. What happens, however, when the caregiver needs a caregiver of their own? How does a disabled veteran handle the demands and emotional toll of caring for a loved one?

As military spouses, we experienced a lot of highs and lows during our spouse's military time. We've cried with them when they lost their comrades, felt our hearts sink when the phone line drops after hearing explosions, saw them give your kids one last hug before deploying, and felt the warmth of the first hug at their homecoming. We even get used to their warped sense of humor and hearing cadences sung throughout the house early in the mornings.

Our roles evolve as we take on the caregiver role. We hold them when they have nightmares. We feel helpless when they realize they have to give up their dream of being career military. We try to ensure our veterans feel needed as we have learned to cope with their absence with a new routine. We let them start projects that don't need to be done right away because it keeps their hands, as well as their minds busy. We attempt to empathize with their emotions, emotional distress, and physical pain, and try to push past the fact that our feelings are overshadowed.

PTSD, TBI, anxiety, depression, back injuries, chronic pain, nerve damage, physical deformities, and hearing loss become daily challenges. We become advocates for our veteran and stay hyper-vigilant because if we can head off panic or warn our veteran before something happens, that eases stress. Whether it be some leaves in the middle of the road, a car backfiring, fireworks, or a balloon popping, we know the panic that hits us instantly, causing us to find our veteran quickly to ease their mind.

Daily handling those stressors is a plateful that military caregivers experience. Caregivers are used to doing more than their fair share because their relationship demands it.  Caregiver burnout is a common struggle when we forget about finding ourselves a support system or providing self-care while caring for our disabled veteran the best we can.

Now, imagine for a moment:

• you're stationed overseas
• you have a toddler and a newborn
• your husband is deployed to Afghanistan
• you have a rapidly growing brain tumor
• and within two weeks, you go blind
• emergency brain surgery (in a foreign country) is about to commence

This was the nerve-wracking situation I found myself in during 2011. I had some previous health issues, but nothing too serious. During this situation, I told myself I did not have time to be scared or stressed. So, I did what any military spouse knows best- I pulled every resource I could, sent a Red Cross message out, and leaned on other spouses for support. I even tried to learn medical jargon in German so I could try to communicate better, but alas, my German abilities are not good. Luckily, most knew enough English to get me through. For the next year, rehabilitation was no easy feat, but we thought once we got through this hard time, we could leave it all behind us.

This was not the case. It was the beginning of my health journey. 

Daily migraines, loss of vision, nerve disorders, Trigeminal Neuralgia (that has the nickname "The Suicide Disease"), kidney problems, gastroparesis, syncope, 11 surgeries... among many other health issues became my new normal. How could I be a caregiver for my disabled veteran spouse if I was disabled?

Through the years, my veteran spouse and I have adopted the motto, "We can do hard things." If we ever get overwhelmed, we remind each other we can get through anything as long as we do it together. Does it get unbearable sometimes? It sure feels like it some days. So, how amidst all the chaos that we call life, do we keep sanity and continue growing as a family?

If I knew, I would be famous for cracking the "Key to Life" mystery for which everyone keeps searching. My health declined quickly, and within eight years, I was found fully disabled, unable to hold a job any longer, and unable to drive. I fight my own body every day just to function, so I struggle daily, wanting to take care of my veteran instead of him taking care of me.

As the saying goes, "Marriage is giving each other 100% each day. Divorce is 50-50." However, when you are both disabled, some days are 150-50, or 200-0. Some days are going to be very lopsided. Whether it is doing household chores, taking care of kids, cooking supper, or running an errand, some days, one person ends up doing it all.

We remind ourselves that if we are completely drained and cannot function any longer for the day, our tasks will still be there for us tomorrow. We can do them later. Sometimes, prioritizing our life is the only way we can accomplish what needs to be done. First and foremost is our children. If we know we have a ball game or tournament to get to, it is our top priority to have enough energy to watch and cheer for our kids. Everything else can wait. We trade off throughout the day when one of us is too mentally or physically exhausted from chasing the 3-year old around, or our arm won't let us play baseball that day. I help the kids with English and Science. My spouse helps with Math and History because we are well aware of which subjects are our strengths.

While many would sit and give up on life because life just got too hard, we have four amazing kids that need us, and we will fight each day to give them the best life we can. They say struggles build character. Well, we have A LOT of character building in our home, but through our journey, we are realizing we are learning patience, compassion, and understanding. Our kids are getting great life lessons as well. They are learning not to judge someone because they "don't look sick." They are learning to be compassionate and helpful to others because they know what their parents go through daily. We are very open with our children about our health issues, and they know how to handle situations that may arise. We hate that we've had to explain all of these complex issues to them, but as many military caregivers know, it is imperative they are well informed. This reduces panic and increases their knowledge of how to handle difficult situations.

What do you want to be when you grow up?

We had so many answers to that as we grew up. I doubt any included becoming a disabled veteran caregiver with a lot of stress and experiences that we would never have imagined. Adding your health issues into the mix makes this caregiving thing a lot more complicated. I would not trade my life for anything, though. My veteran spouse and I need each other now more than ever. It's us together, through this crazy thing called life. If you remember to stay honest with each other on how you are feeling, be patient, know your limits, throw in a few sarcastic remarks every day, and prioritize your life, you, too, can do hard things and conquer them.

Written by Kasie Craft