The Needs of Caregivers

Last night ABC aired a piece about military caregivers and Elizabeth Dole’s initiative to bring attention to the needs of caregivers. I posted a link and one of the comments made me think. Prior to becoming one, I never really considered the situation caregivers face…or really even what the wounded warriors face. I was clueless. When I left my house in Georgia on June 14th, I thought I’d only be gone a short time. I assumed that Walter Reed was just to stabilize Justin and get him to a certain point and then the Warrior Transition unit at Ft. Stewart would pick up where they left off. I knew our lives would change, but I didn’t know how much. I quickly learned that most places to not have the experience or staff to help amputees. Pretty much there’s just Walter Reed and the one in Texas which is why we’re still here nearly 10 months later.

 What is a caregiver? There are many different kinds of caregivers. Here at Walter Reed, it’s someone who is caring for an injured service member. The majority are either a spouse or a parent…most being a wife or mother. Some have a sibling or other family member or friend here to help them. Other kinds of caregivers are an adult child caring for a parent that is no longer capable of safely caring for themselves. Another is a parent caring for a special needs child. While the needs of person being cared for are often very different between wounded, aging, and special needs child, I think that all caregivers have similar needs in some areas.

 Here at Walter Reed, most caregivers are having to care for their loved one in multiple areas. Most of the wounded tend to have multiple problems that need attention. Justin is one of the lucky ones. Losing limbs may not be what most people would describe as “lucky”, but think about it. Justin had a rocket land at his feet…not just a rocket propelled grenade (RPG), but an actual rocket. He survived it. Not only did he survive, but he kept his knees which makes rehab a whole lot easier (well, it will once he’s back on two legs anyway). He also did not sustain any brain injuries which is unusual. One of his soldiers that was somewhat close to Justin when the rocket hit got a concussion, yet Justin did not. I guess something can be said for him having a hard head. Another thing Justin hasn’t really had that many others who have seen combat have had to deal with is post-traumatic stress. Prior to his injuries, I had often complained to him about how little emotion he showed. I would get so frustrated when something that would upset me didn’t seem to bother him at all…okay, I confess, I get frustrated by it still. He just goes with the flow and doesn’t let things get to him. I’m completely the opposite, so in some ways, this journey of ours has been a lot harder on me (emotionally…he’s got me beat with the physical aspect). The most emotional he’s been since all this started was when he was on quite a cocktail of pain medicine. I thought that facing his mortality had made him more sensitive, but as soon as he was off the meds, I realized that it was the drugs talking. Most of the caregivers have to deal with both physical wounds that you can see and often that you can’t like brain injuries. Many also deal with PTSD and other emotional changes their loved one has gone through. As difficult as it’s been, I’m thankful that I only have one set of problems to help him through.

 What do caregivers need? Most of us won’t reach out to ask for help. The needs of the person we’re caring for tend to make our own needs seem smaller in comparison. Sometimes we don’t even know what we need or how to put it into words to ask for it. I guess the first thing would be for prayers, prayers and more prayers. Justin needs prayers for physical healing, but our whole family is part of this struggle and some days it’s just plain hard and I have to drag myself to make it to bedtime. Some days I feel like I’m about to explode and things keep adding up until something that normally would be annoying makes me want to scream and cry and throw things. Like the other day, it was raining and we were going somewhere. I buckled Corey into his seat, then ran back to help Justin into the truck. Then spent a few minutes manhandling his wheelchair to get it into the backseat of the truck (since it can’t be in the bed when it’s raining or it’ll get soaked). By the time I finished that, I was pretty wet and then Corey confessed that he’d unbuckled his seatbelt. Corey unbuckling his seat belt never makes me happy, but when I’d already been soaked from the rain and frustrated with Justin’s chair, that was the last thing I wanted to hear and I was ready to lose it. I’m not a ticking time bomb, but sometimes my emotions do get the best of me and I feel like the Hulk (minus the green skin and huge muscles of course)…turning from a loving wife and mother to someone who wants to smash things.

 Caregivers need a break. Living in this small apartment, practically on top of each other isn’t always easy. Sometimes I need a vacation from it, but unless Justin gets leave, I’m stuck here. Probably a lot of people don’t realize that Justin and the majority of the wounded here are still active duty which keeps them under military policy regarding leave. We can’t just come and go as we please. If we go outside a certain mile radius, he has to request permission first. If he wants to be gone during the week, he’s got to take leave or get a pass. He’s also limited by the number of days of leave that he can take. If he takes leave to go on a hunting trip, it might require him to cut Christmas leave short. It’s frustrating when all three of us need to get away from here for a mental health break (or for Justin, he physically heals better away from here), but we can’t. They attempt to run this unit as if it was a normal unit, but it’s just not. Red tape is a part of our daily lives and likely always will be since once Justin’s out of the Army, we’ll be dealing with the VA. Sometimes I just want to run away from it all, but when I married Justin, our vows didn’t saw for better or for worse (unless worse requires me to put up with things that stretch me to the limit). So many marriages fall apart in situations like ours, and while it’s horrible, it’s easy to see why it happens. Dealing with this amount of high stress for months/years without seeing the end in sight and knowing that for some aspects, the only “end” is either death or divorce is difficult to say the least. No, our marriage is not on the rocks, but if you want to include the marriages of the wounded warriors in your prayers, it would be appreciated.

 For others it’s a parent who thought they were done caring for the daily needs of their son or daughter when they moved out and joined the military. Many have had to leave careers, spouses, and other children behind to come to Walter Reed to care for their adult child in a time of great need. For others it’s a sibling or friend who leave everything behind to come here. Many of the non-spouse caregivers have lost their insurance when they lost their job to come here. Yes, there is the Family Medical Leave Act (FMLA), but that’s only for a limited time. Places of employment can’t be expected to hold open a job for years waiting for the care giver to return. There are so many sacrifices made by caregivers.

 Another need is to please be understanding. If you send me a message and I don’t answer right away, please don’t think I’m ignoring you. If you call, and I don’t answer, it’s not because I don’t want to talk. I’m probably at an appointment with Justin when the message pops up on my phone or my phone rings. I can’t always answer right away and with the million things on my mind regarding Justin’s care and raising a very active 4 year old, it may take me a bit to remember to return the call or message. I do appreciate every message or call. Please don’t give up on me. Knowing you’re thinking about me enough to contact me means a lot.

 As the segment mentioned, the risk of depression is high among caregivers. I’m not in a constant state of depression, but I do have my ups and downs. It’s hard being surrounded 24/7 by pain. Knowing that while things will get somewhat better, there will come a point that we’ll be at the best we’re going to be and that will be our “new normal”. Many of us silently grieve for what should have been. The futures we imagined for our families are now shattered and we’re mostly in survival mode. Imagining the future can be scary with all the uncertainty. For us, the future we imagined was Justin returning from his third deployment just like he did with the first two. A homecoming ceremony and enjoying some more time at Ft. Stewart. Likely several more changes of duty station and Justin putting in his 20 years in the Army and retiring at the age of 39. We had brought up the possibility of having another child after the deployment. Right now, I have no clue where our life is headed. Justin is back and forth on whether he wants to stay in the Army is medically retire. And with the troop drawdowns, he may not have a choice in the matter. We have no idea how long we’ll be at Walter Reed. They’re just starting the medical board process and we’ve heard that can take up to a year…or longer. As for another child, I feel anxious just thinking about being pregnant or having a newborn right now. I’m juggling so much right now trying to give Corey the attention he deserves while caring for Justin and every now and then trying to squeeze in a little time for myself. The thought of adding in another little one is more than I can handle right now…and possibly ever. And that’s without even talking about pregnancy and post-partum hormones which make even the most normal situations seem worse. People sometimes tell me that I’m so strong or call me an inspiration. Most of the time, I don’t feel all that strong or inspiring. I feel worn out and run down. I feel like when I’m spending more time taking care of Justin that I’m failing Corey and when I spend more time with Corey that I’m failing Justin. I feel a little guilty taking time for myself because if Corey acts up, Justin may not be able to physically handle him since Corey likes to hide in places that Justin can’t reach.

 To echo the Jessica’s statement at the end of the ABC segment, don’t forget about us. When Justin was first injured, I was overwhelmed with the number of messages and calls I received from friends and family…and even some people who were complete strangers at the time, but I later had the opportunity to meet. Here we are nearly 10 months later and sometimes it gets pretty lonely. I’m to blame as much as anyone else. I don’t usually reach out to people not because I don’t want to but mostly because I’m so busy with Justin and Corey that I just don’t think about it. I know other people are just as busy with their families and jobs and such that it’s hard to find free time to sit around and talk on the phone or computer. Justin may be out of the woods, but our journey is nowhere near over. Often, people don’t know what to say when someone loses a loved one or they find themselves in situations like ours, so they just don’t say anything for fear of saying the wrong thing. Yes, sometimes well-meaning people make some pretty ignorant comments, but for the most part, when showing you care, your words are generally much appreciated. Please continue to keep us in your thoughts and prayers as we find our “new normal” and set out on that road.

 Also, please keep the children of wounded warriors in your prayers. For some, life at Walter Reed is the only life they’ve ever known. They came here as babies or weren’t even born yet when their daddy was injured. For others, like Corey, they’re expected to leave behind friends and routines and understand things that adults struggle to comprehend and deal with. Sometimes they stay with relatives for a while, and other times they live on the hospital grounds in a tiny apartment. They are dragged to appointments and have to see their parent in a lot of pain when they’re in the hospital. It’s a lot for them to deal with and they don’t always express it properly. They often act out to get attention because they went from being the center of mommy’s attention to having daddy take a lot of the attention away. Sometimes they’re scared and find that emotion difficult to express as well. Many kids never knew or will never remember when life was “normal”, when their daddy had all of his limbs and didn’t need help caring for himself. That’s tough for such little ones to grasp, and they need your prayers too.

I say all that, not to complain, but to be real. I have much to be thankful for and most of the time, that’s what I try to talk about. People typically would rather hear about the happy, upbeat stuff rather than the difficult parts of other people’s lives, but sometimes we need a glimpse into the other side of things so we can better know how to respond and pray for them. Before June 9th, I was clueless. I wish I’d known someone who could have opened my eyes to how life would be post-injury. I would have been a lot better prepared for how life now is, but prepared or not, my life has changed, as have the lives of so many here at Walter Reed. Caregivers have been referred to as “Hidden Heroes”. I don’t feel like a hero. The heroes are the ones who sacrificed life and limb and have wounds that are visible and invisible in their service to our country. We’re the ones who help them put the pieces back together when they return.  We’re normal people who have stepped up to a task that is nowhere close to normal. We work mostly behind the scenes and often aren’t even noticed unless we screw up (or are perceived to have screwed up). We do it out of love and commitment, not for personal gain or recognition. Our path is not one we chose, but we don’t want pity and neither do our wounded loved ones. Prayers, love, and support are appreciated though. Thank you so much, my friends, for all you’ve done to help us over the last year.