Tuesday, November 27, 2012

My Caregiver Hat

     Many days I feel the need to remove my caregiver hat. It's worn out, tired looking and needs to renewed, but it's under several other hats that I wear. My other hats are: wife, cook, maid, yard and house maintenance person, organizer, counselor, motivator, physical therapist and pharmacist. The last two I'm not licensed in, but I practice some of the duties on a daily basis. When I became a caregiver, I didn't go looking for the job. In fact, I didn't fill out an application and certainly no one checked references to see if I was qualified! It has strictly been on the job training: sink or swim and I have sank on many occasions.
     When Aaron was paralyzed almost 6 years ago, he was sent home with no medical follow-up care. The VA discharged him and the Army forgot about him. He was in limbo within the system. I wasn't taught how to care for him or to recognize medical issues. In fact, while he was inpatient at the VA there was no program to include me in much of anything. I think they forgot that I was the one who would be caring for him when he came home. I was doing things for him that I never thought I would do for another human being. Honestly, I was barely taking care of myself while trying to deal with the tragedy that had taken place.
     When we become caregivers, we take on a lot of extra burdens and over-function. When we over-function the veteran under-functions and that in turn leads to a vicious cycle. For myself, even when Aaron became more independent, I still over-compensated, because it was all I knew. He later told me that when I over-compensated it made him feel incapable. That wasn't my intention. I really thought I was helping. Everywhere we went, I was on the lookout for any situations that could be difficult for him. I didn't want him to struggle. I worried about accessibility issues, his lack of sleep, forgetting to take his medications, his physical pain, his current medical issues along with possible future issues and what if he tried to do too much and caused himself more pain? I had a difficult time learning how to step back and when to not help unless asked. I had to learn that he's a grown man and capable of more than he was right after his paralysis. I still struggle with this.
       Now that I'm not working outside the home, I have a need to feel validated and acknowledged. It's not that I want a bunch of "that-a-girls" but somewhere in all of this I tend to lose myself. I need to be reminded to take care of myself and take off my super-caregiver cape. I like to think that I can do it all and be perfect. I trying to be okay with mediocrity and I really don't like it! I need to feel connected with other caregivers that understand my thoughts so I have don't have to go into great detail about everything, besides I know that most people don't really want to know. Other caregivers simply "get it". When I interact with non-caregivers, I don't generally share my fears, because I don't want pity. I just want support. As military wives, we're very independent and have learned to rely on ourselves. We have endured so many deployments that we have become self-sufficient. We don't normally have family around to help so we generally just don't ask for help. We are quick to adapt.
     Fortunately, over the years, there has been an increase in awareness regarding caregivers of veterans. In fact, just this month Redbook magazine ran an article about Post 9/11 caregivers. I'm blessed to say that I know two of the women profiled. They have overcome in the face of adversity. I'm not trying to discount other caregivers, but I do feel that the caregiving of a veteran is unique. Many of us are young, have small children at home, have quit our jobs and are isolated from family. We're dealing with PTSD, TBI, amputation, paralysis, trying to explain to children why mommy or daddy isn't the same as before, while we as spouses are still trying to grasp that. We grieve for the loss of what we thought our lives would look like and loss of our dreams. Yet we press on.
     I want to remind you that while you're pressing on you still need to take care of yourself. I can hear you saying, "I don't have time to care for myself." Guess what? If you don't, then you'll crash.
I've been there, done that and it wasn't pretty. Not only was I hospitalized for a week, but my husband had to take care of me when he was needing to be cared for. I truly know how hard it is to slow down, but we have to care for ourselves in order to be there for others. In the South they say, "Ain't no one happy if momma ain't happy."
     Here's some quick tips: 1) Stop and breath 2) Be mindful of the moment. So often we worry about the next thing and forget to be in the present 3) No negative self-talk. Boost yourself up, not down. 4) Let go of control-What can you control? Let go of the rest. I'll let you know when I master this one! 5) Know that it's ok to say, "I need help". 6) Get rid of energy drainers. You know what I'm talking about. People that bring you down or create more drama that you don't have time for. Create boundaries for those people and say "no."
     If you want to find resources, aside from my resource list under the Sept archive, then check out  Hearts of Valor and Family of a Vet.  You'll find great tools, ideas and information. Also, there are many groups on Facebook that connect caregivers of veterans. Many of them are "closed groups" which means comments are hidden from view of non-members so you can post honestly without being judged. I check out Facebook daily. It is my social connection, a place where I can chat with others who understand me and can encourage me when I want to remove all the different hats I'm wearing. So reach out, connect and most important take care of yourself.

Thursday, November 1, 2012

Project Odyssey Retreat

    Last week, Aaron and I had the pleasure of attending a Project Odyssey Couples Retreat provided by Wounded Warrior Project at Jordan Ranch in Schulenburg, TX. We flew into the San Antonio airport and right away began connecting with the staff of WWP and couples that had already arrived. Mike, Kevin and Robyn with WWP were full of enthusiasm for what we were about to embark on. Little did we know what they had planned for us. They didn't tell us about no TV for the entire week! I'll explain why later on. Once everyone arrived we were whisked away to the ranch. The drivers were so helpful that I didn't carry one bag, which is something I appreciated since we had luggage for myself, Aaron and our service dog.
     When we arrived at the ranch, we checked in, had some down time and then assembled for a delicious  "supper" courtesy of Mik. He's an amazing character, full of passion for life and God. Mik informed us that it's called "supper" not dinner. Whatever you want to call it, he made delicious creations for us all week. BBQ'd pizza, fresh salsa,  marinated pork chops, scrambled eggs & sausage, biscuits & gravy....yummy!
     Immediately after supper, (oops, almost said dinner) we gathered upstairs for a rundown of the week's activities and what we could expect to gain from Project Odyssey. We were scheduled for classroom time intermixed with outside activites like skeet shooting, zipline, date night, a ride in the "love mobile" and  what I call "dress up the warrior." I mentioned no TV earlier in the post, but that wasn't due to it being off limits. The ranch purposely doesn't provide TV anywhere on site so we would be present in the time we spent at the ranch instead of distracted by all the chaos going on in the world. I have to say that it was odd not to know what was happening in the outside world, yet at the same time I didn't miss it.
     I won't give you an hour by hour run down of what we did all week, because that would put you to sleep, but I'll tell you about what impacted me the most. Don't think that you can go to a WWP retreat and come back unchanged. You will be impacted in some way & that is relative to how much you put into it.
     Ziplining (is that a verb?) was the scariest thing I encountered. Before we walked down to the zipline, I was full of anticipation and sure that I was going to jump off the platform without hesitation. I climbed up the pole with strength, but as I stood waiting to be connected to the zipline, I started to second guess this whole idea of jumping and fear set in. I could feel the platform shaking from the wind or maybe that was me shaking. It's all a blur. I did jump after a minute or two of true fear though and the thrill was worth it. Since Aaron wasn't able to climb up the pole, they used a swing device to secure him in and then the guys pulled him all the way to the top. When they let him go, he was laughing like I haven't heard in a long time. Typical to soldiers, they had to outdo themselves and take Aaron up higher the second and third time. They had to be sure that he touched the bottom of the platform. Looking back, isn't that how life is? We fear so many things, but once we let go of fear and allow ourselves to experience the unkown we realize we'll survive it.
     The following day we shot skeet. Before Aaron's paralysis, he shot skeet regularly and had taught me how to shoot as well, but we had only shot skeet once since then. We divided into 2 teams of soldiers and spouses. Kevin and Geza made a bet that the losing team had to jump into the pool with their clothes on. Game on! My team had some great shooters on it and we deligently kept score. Aaron originally got side tracked talking to someone on the other team, but I was told to go get him and bring him back. Word had gotten' out that he was a good shooter. After 3 hours of shooting in the Texas sun, we proudly boasted our score only to find out that Kevin had never even kept track. He must have known we were beating his team. Luckily, he forfeited and kept his word to jump in the pool that night after dinner. Wish I had a photo of that.
     On the 4th day we had  break-out sessions so the soldiers could talk amongst themselves and the spouses could do the same. It's always good to hear that you're not alone in the way that you feel or think and encouraging to hear of someone who's successfully navigating this tough journey. When I speak to others that don't have an injured military loved one, they can give empathy but they don't truly get it. Only those that are in similar situations can fully grasp what a typical day is. For example: dealing with the VA, accessibility issues, PTSD and or TBI, medications, isolation, sleep issues, caregiving responsibilities and more. These break-out sessions allowed Aaron to relate to other soldiers and when we came home he said, "I realized for the first time that I'm not as unique as I thought I was in the way I feel." He had many break throughs during the week and I can see how they've changed his perspective for the better.
     Finally, we did an activity that I'm calling "Dress Up the Warrior." Two tables were set out with craft items such as plastic cups, colored markers, paper, hand cuffs, felt twist ties, pom poms, paper plates, duct tape in multiple patterns, puzzle pieces, etc. The soldiers had to dress up their warrior using the craft items in a way that explained how they protected others from their injury and/or how they felt because of their injury. The spouses had to do the same but using the items to express how we protected ourselves from their injury. I chose handcuffs and said, "I need the key to unlock your worries so that we can focus on the future instead of the past." I also chose a pink heart and said, "I chose this heart to show that I have to have a big heart so that I don't get hurt or become hardened to what you're going through." Some people chose paper plates to create a shield to protect themselves from their spouse's outburst or pom-poms to represent being a cheerleader when their soldier is feeling depressed.  You can see from the below photo that there was quite a bit of creativity. Although this activity was fun, it was also an eye-opener for those of us on the other side. I was able to understand a little better what an injured soldier feels about themself. I can never say that I get it, but I can always have respect for what they've endured for our freedom.
     I wish I could describe all the great memories that were created this past week, but it would take pages. What I can say is that I came back a changed person with a better appreciation for what Aaron has experienced. I saw pride, courage, selflessness and compassion in every person that attended this retreat. It takes a lot to let your guard down, speak honestly about your feelings, let others help you and press onward when life gets difficult, but I saw it happen all week long. Thank you WWP for a memorable experience.