Tuesday, October 1, 2013

Reaching Out

When was the last time you reached out and asked for help? Maybe you needed emotional support or needed physical help getting something done, but you just couldn't bring yourself to do it. What's holding you back from receiving the support that you need to move forward? Caregivers are not exclusive to needing support. Anyone who is grieving, dealing with tragedy, going through divorce, financial crisis or other difficult situations often need support, but may find it hard to do so. Why is that?

 I think back to the first week of my husband's injury and recall the physical and emotional turmoil we were in. Our lives had been turned upside down. We were both dealing with his injury, both visible and invisible, but the way we each dealt with it was completely different. I remember sitting in front of the computer typing various phrases into  Google's search box. I was hoping to find some sort of support system that would let me know I wasn't alone, but the term "caregiver" didn't even cross my mind. How could it when I only knew myself as his wife? In our location, there were no support groups for military spouses of injured soldiers. I asked many times at the VA and the response was a blank look along with the answer "no." I understood that my husband was their focus, but I needed help as well. How could I be there for him when I was falling apart? I attempted to put on a strong front, acting as if I had everything figured out, but on the inside I was screaming at the top of my lungs for help and acknowledgement. I desperately needed to connect with anyone who could serve as a mentor. I needed someone that had been through it and could help me navigate what I now call a "scavenger hunt." I was barely treading water trying to keep some resemblance of our "old" life intact, which was unrealistic, because I didn't have the tools to accomplish that.

What makes it so difficult to reach out for help when we need it? Maybe it's our pride, needing to be in control,  not wanting to be judged, shame, not knowing where to seek help or simply feeling that no one else could possibly understand what we're going through. Sometimes we're in denial. As one caregiver said, "...my husband and I have it all figured out and we're coping. I was totally lying to myself." Maybe we look at other people's lives and think, "How can I ask for help when they have so much on their plate? I don't want to burden anyone." Maybe we're afraid that if we do get help then we'll have to expose the reality of what's really going on in our lives and that makes us fearful and vulnerable.

Of the times that people offered help, and probably had good intentions, more often than not they didn't follow through. We'd get our hopes up only to find that they weren't reliable and when that happens enough times you lose faith in people and simply don't ask anymore. You decide that it's easier to rely on yourself instead of others. Often times, people do not "get it" and can we really expect them to when they aren't with us 24/7? For many of us, when we're out in public we may look fine, but what's going on at home is another scenario altogether. We're good at keeping the collateral damage under cover. Another caregiver said,"There are not so many people to reach out to. You have to feel that you can trust them. I'm not sure I know how to accept help, it's been so long since I really had any. I almost never share my true feelings about our situation, because I don't think they can handle it."

It's obvious that reaching out for help can be difficult, but we have to realize that it's healthy to do so. Yes, people may let us down on occasion, but I have found more often than not that when I opened up and reached out to others, that in turn I made a connection and found support. I just had to learn what resources were available and reliable. It's been 6 years since Aaron's injury and I'll be honest in saying that I sometimes still struggle with this, because I'm a work in progress! However, what I've realized is that everything I've been through has given me compassion and the tools to help others. Reaching out for help is a sign of strength, not weakness. My hope is that by reading my words today that you'll find the strength to reach out and know that you're not alone.

Here are a few amazing organizations available for support:

www.hopeforthehomefront.com
www.heartsofvalor.org
http://www.notalone.com/
http://www.veterancaregiver.com/

Resource lists:

http://www.wifeofawoundedveteran.blogspot.com/p/resource-list.html
http://warriorcare.dodlive.mil/files/2013/08/Caregiver-Directory-Printer-Friendly-8-5-x-11.pdf
http://www.operationwearehere.com/

Helpful books:

"Wounded Warrior, Wounded Home: Hope and Healing for Families..." author Waddell and Orr
"When War Comes Home" authors-Adsit, Adsit and Waddell
"Combat Trauma Healing Manual" author Addsit, Rev. Chris
"Bread Crumbs on Purpose" author Fulkerson, Sandy













Tuesday, August 6, 2013

What's getting in YOUR way?

How often throughout the day do you think to yourself, "Life sucks" or "Why me?" or "This isn't how I expected my life to turnout." If you feel this way then know that you're not alone, because I used to be that person. I walked around complaining about anything that wasn't the way I wanted, judging others as well as myself, and worrying about things I had no control over. I had a steady job, a nice home, nice car, a wonderful husband, and family support. But for various reasons I was always unhappy and this was before my husband's injury when life was smooth sailing. I felt like something was missing in my life, but it wasn't until I started consciously monitoring my thoughts that I was able to turn my negative emotions around. I didn't change overnight, but rather I evolved over the past few years. I'm not saying that negative thoughts will never cross your mind, but when you speak them out loud then you're bringing them to life. What if you took just a handful of your negative thoughts and turned them around? You might find that your perspective begins to change. So, what's getting in YOUR way?

Assume innocence: Let's start with something easy. How often do you get upset when someone cuts you off in traffic or when someone gets in your way while you're in a hurry?  I know that sometimes people are simply rude, but consider the fact that sometimes that person may not realize what they did. Maybe they received bad news right before they got in their car and they're distracted. Maybe they have a lot on their mind or they're exhausted. Can you relate to this? As caregivers of wounded warriors we can all relate to receiving bad news and I think most of us have a lot on our minds. So, try not to take things personally and assume innocence.

Being busy vs. productive: Stop trying to be everything to everybody! How many responsibilities have you taken on recently that have no meaning to you? Did you say "yes" to please someone else even though you really don't have any extra time in your crammed social calendar? I personally have a tendency to take on too much. When I thought about why I do this I realized it's because I want to feel needed and valued. However, you can only do so much for others before you wear yourself out. I know that as caregivers we want to make things easier for our veterans, but ask yourself if he is capable of doing it himself or are you doing it for him to make your life easier? It's more important to do the things that really mean something to you and are productive than simply staying busy.   Cut out the busy work and carve out time for yourself.

Forgiveness: This is a tough one. Who's in your life now or from the past that you haven't forgiven? Better yet, is there something that you haven't forgiven yourself for? After my husband's injury, I was angry at a lot of people for various reasons. Guess what? None of those people cared nor were they affected by my hurt. They had all moved on while I was left stewing and unable to forgive. I also had to forgive myself for not handling my husband's injury as well as I thought I should have. I'm not sure which was harder, forgiving myself or the other people. Forgiveness is not condoning someone's behavior, but rather making the choice to not be a victim, acknowledging your hurt and gaining control over your feelings. Like I said, this isn't easy but if you start by forgiving the little things (like the person in traffic) then after a while you'll be able to move on to bigger situations.

Stop trying to change others: Ouch! I really struggle with this one and think I will for the rest of my life.  I remember when we first got married and I spent 75% of my energy trying to change him and it didn't work. People are who they are, just like you and I are the way we are. I have to remind myself that other people's behaviors are not a reflection on me and that just because I think something should be done a certain way doesn't mean everyone else does. It was a big let down when I realized the world didn't revolve around me!

Comparing your life to others: It's human nature to look at other people's lives and wonder why they have more than we do when it comes to money, happiness, toys, friends, etc. How often do you look at the people that have less than you do and ask "Why have I been blessed with so much, while they haven't?" Did you have a nice hot shower this morning? Do you have a roof over your head? Do you have food in your pantry? I'll be the first one to admit that it's hard being a caregiver, but I try not to focus on the negatives or what other people have. It's so easy to forget about the basic things that we take for granted. Try to stop and think about others, because you may be surprised by how many people would be thrilled to trade places with you.

Passion: What makes you lose track of time or gives you a sense of accomplishment? Do you enjoy writing, drawing, gardening, reading or serving others?  We all need something that motivates us to move forward. For the longest time I had stopped writing, because I didn't think what I had to say was relevant. Then several caregivers encouraged me to tell my story and I took the risk. It paid off when I realized that being vulnerable and sharing my story was helpful to others while at the same time validating their feelings or thoughts. Ask yourself, "What did I enjoy doing before I became a caregiver?" and start doing it again.

Once you start consciously thinking about some of the items on this list then hopefully you'll see a shift in how you filter the things that happen in your world. Don't expect your feelings to change overnight. It's a gradual shift in your perspective and soon you'll be saying to yourself, "Life is good." Don't focus on the past, but rather learn from it and let your troubles transform you.

So, what's getting in your way now?














Saturday, August 3, 2013

Women and weapons

What happens when you bring the shooting industry's executives together for a weekend of competitive shooting in Cody, Wyoming? You get industry peers relaxing and having fun at a shooting event. HAVA invited Aaron and I, along with another couple, to participate in this event. HAVA works hand in hand with the shooting industry as you can see from this quote on their website: "As the number of injured men and women returning from the battlefields of Iraq and Afghanistan grew, members of the firearms industry initiated a non-profit partnership called HAVA to aid disabled soldiers as they transition to their lives back in the United States. The ultimate goal is to increase their confidence and hope for the future by reconnecting with their love of the outdoors and the American traditions of hunting and firearms."  This event gave the industry executives the opportunity to see firsthand where their donations are going. The private industry is vital to the ongoing support and unmet needs of wounded soldiers. They pick up the shortcomings of the VA and the various branches of the military. 

For the entire 20 years of our marriage, I have watched Aaron drool over gun magazines, talk gun talk for hours on end with his buddies and go to the range anytime the opportunity presented itself. The way most guys are into sports is how my husband is with guns. He can never get enough! I never really understood this fascination until I participated in the Shooting Industry Masters event. The majority of the group was men, but I was surprised to see how many women were in the industry as well. It was the first time I had been around female shooters and seeing how well they performed brought out the competitive side of me. I had the chance to shoot in timed events, shoot black powder rifles, shoots with a laser and more. My favorite was shooting at the metal targets and hearing that plinking sound when my bullets hit the target.

During this event, I learned that the number of female shooters has increased over 51% in the last decade and that manufacturers are gearing their marketing to female shooters. Female shooters want color choices, accessories and pistols that fit smaller hands for conceal and carry. Would you have guessed that the most popular color choice for accessories is pink? Barbie pink is not my personal favorite, but if lavender or a soft teal were available I would snap it up. To learn more about female shooting clubs check out http://www.agirlandagunclub.com/ or http://babeswithbullets.com/

 I got a little side-tracked talking about my new interest and forgot about everyone else. Sorry! For the HAVA team there was a relaxed schedule which allowed us to shoot side matches and not actually compete. Many wounded veteran's bodies don't do well with a timed schedule and the stress it puts on them, so being on a relaxed schedule was perfect. Each station offered something different to shoot ranging from black powder 4570's, to target shooting with pistols or rifles, to skeet and trap, etc. Aaron and Nick (another wounded veteran) shot a replica of the Gatling gun, which is the forerunner for the machine gun. The Gatling was used by the Union forces during the American Civil War in the 1860's. Each time Aaron and Nick fired it, 20 rounds were expelled in a matter of seconds. This was easily Aaron's favorite as he shot it over and over and over again! 

To round out the weekend, we had a some downtime to sight see in Cody. We spent close to 6 hours in the Buffalo Bill museum, ate at the Irma Hotel (where Buffalo Bill's famous bar is located), checked out the Old Trail Town and spent each evening relaxing in the pool and enjoying conversation with our group. The final evening was a dinner with auction to raise money for the USA Olympic team as well as First Shots http://www.nssf.org/firstshots/ which assist new shooters in learning about the sport. Prizes were given out for various events to include "most improved with laser" shooting in a timed event. I was one of the 3 winners in this event, which awarded a Lasermax Centerfire laser of our choice. I joked that I won this event, because I didn't realize I was being timed the first round and so naturally I improved the 2nd time around when I understood that I needed to speed it up!  Unfortunately Aaron didn't win the Buffalo Bill replica rifle that he had his eye on, but Nick won a gift bag full of gun goodies.

Thank you to the Shooting Industry Masters sponsor -FMG Publishing, which made this event possible as well as all the volunteers. We had an amazing time and great conversations with genuine people who love this sport and we hope to participate next year. 

P.S. When we got home, a copy of Guns and Ammo was in the mailbox and I wrestled Aaron for it. On the front was a palm size .380 pistol with interchangeable frames in white, earth brown, black, purple and you guessed it....pink. I admit that the color choices caught my eye on the front of the magazine and at the same time I think Aaron liked that I wanted to read his magazine. Good job marketing folks!

P.P.S. I took a CHL class (concealed handgun license) last weekend and passed it. Once I complete all my paperwork, FBI background check and finger printing I'll be an official gun toting wife with her own small-sized weapon.Watch out boys!



Wednesday, July 17, 2013

Then and now.

    
     Then and now. Who was I before his injury? Who am I now? What made me stay when it would have been easier to walk away? I'm certainly not the same person I used to be, because my priorities and perspective on life have changed, but my core personality is the same. I'm still high-energy, independent and determined to succeed, but at the same time I've also learned to be introspective and to not take life for granted. I frequently refer to my life as "before his injury" and "after his injury." Many wives of wounded veterans refer to their life the same way, because there's a drastic delineation from before & after and it affects the entire family. While some wives choose to leave their spouse for various reasons, others will stay the course. It's a decision I have seen many wives struggle with. Being the wife of a wounded veteran can be a lonely one, because so few people understand the struggles we face.

 February 1992, I saw Aaron for the first time. My college roommate had invited her friend to visit and he brought Aaron along for company. What I saw when I looked through the peephole of my apartment door was 2 young military men in BDU's, both standing tall and proud, even though they didn't know I was on the other side of the door. I stood looking through the peephole for a couple of minutes before they walked away. In case you're wondering why I didn't answer the door it was because I had taught an aerobics class minutes earlier and I wasn't going to answer the door covered in sweat from aerobics! I was admiring the young man with the blonde hair and blue eyes and needed time to get myself together.

When they returned, I met Aaron and was instantly infatuated. We both liked to workout, which gave us a common topic to talk about. I remember talking to him and experiencing that giddy feeling inside of me. I wanted to talk to him for as long as possible and I was pretty sure that he was feeling the same. Over the course of the next few months, I got to know him, the feelings grew and I realized that he was "the one". His eyes light up his face when he smiles, he is masculine yet compassionate. He's protective of anyone he cares about. He's strong in mind, spirit and body. He's courageous and a fighter when it comes to something he believes in. He doesn't give up.

We dated for 3 months, Aaron finished his enlisted time with the Army, we got engaged and I moved to Missouri to be with him. Our wedding was the following June. Aaron completed his college degree and after 4 years of marriage, Aaron re-enlisted in the Army as an officer and we started the pattern of moving from one base to another.We both pursued our careers full force and planned to retire early so we could travel the world. In some ways I would say that we were on auto-pilot living life, but not truly experiencing it. We were both living for our careers and where those careers would take us financially.

Aaron's injury changed our lives drastically and we've both been impacted by it in different capacities.  I'll be honest in saying that one year after my husband's paralysis I didn't think I was strong enough to stick with him and I pretty much gave up. I'm not sure how many people would admit that, because they don't want to be judged, but I don't see the point of pretending that I had it all figured out when I didn't. I hit rock bottom before I realized that the man I married was without a doubt the man I still wanted to spend my life with no matter what the circumstances. "In sickness and in health" weren't just words anymore, but reality. There is no closure when your love one has a chronic condition. Each day is a constant reminder of what you both have lost. One day while eating dinner with another caregiver she said, "Sometimes I think it would have been easier if he hadn't survived, because then I could move on." Tears welled up in my eyes, because her comment resonated with me and I had felt guilty for feeling it on occasion. She had unknowingly validated my feelings.

I no longer work full-time in my career field, which means I have given up part of my identity. I continued working full-time the first 5 years post injury, but I was overwhelmed and resentful trying to hold it all together, so I gave that up when we moved last year. It's bitter-sweet in that I have more hours at home, which in turn means more flexibility in my day to day schedule. Many of the items on the "Honey Do List" are now mine to complete and traditional roles are out the window.

My priorities have shifted. Little things that used to upset me are now set aside, because I don't have time to waste on them. I spend my time not only keeping track of his schedule, but my own. That includes doctor's appointments, medications, rehab and more. I'm always thinking for him and myself, because his sleep deprivation affects his short term memory. I spend the majority of my time with my husband, which I didn't expect to have with him until my late 60's at retirement age and that has been one of the bigger adjustments. We're not traveling the world partly due to accessibility issues, but the traveling we do now is in the form of retreats with non-profit veteran organizations.These are not complaints, but rather the facts of our "new normal."
 
This year we celebrated 20 years and he's still "the one". I know that he's my rock. He's the person I want to bounce crazy ideas off of, the first person I want to share good or bad news with and he's the one I know will tell me what I need to hear instead of what I want to hear. We have experienced life changing events (his paralysis, my lung cancer and near divorce) that make you either give up or wake up. Fortunately, we both chose to wake up and become one team even though that road has been a rocky one with some mountains thrown in for extra stress.

I will close with a comment that a neighbor made to me when I was giving up. I was angry, feeling sorry for myself and wanted our old "pre-injury" life back. I'm paraphrasing what she said, but it went something like this, "You can walk away, which would be easier and start a new life or you can choose to stay with him. If you stay, it will be a harder life, but one day when you're old you'll look back and know you did the right thing." Starting over isn't always the easier choice. I had to dig deep down and examine what I wanted for myself and take part in life again. I had to let go of the guilt I felt for falling apart in that first year. I had to grow up and realize that life doesn't always give you the easy road and that often maturity involves putting your loved ones first. What I wanted was to be with my husband, no matter what the circumstances, which means now I ask myself, "What's next?"  instead of "Why me?"

"The bigness of the world is redemption. Despair compresses you into a small space and depression is literally a hollow in the ground. To dig deeper into the self, to go underground, is sometimes necessary, but so is the other route of getting out of yourself, into the larger world, into the openness in which you need not clutch your story and your troubles so tightly to your chest."  quote-Rebecca Solnit

    
   
    

   









Friday, June 14, 2013

Rising above grief.

     It's interesting how people come into our lives when we least expect it and often it's when we're doing something as basic as grocery shopping, going to an appointment, renting a movie, etc. I believe that people are put in our path in order for us to connect, share and learn from one another. When it happens & you're willing to open yourself up to someone, it can be an amazing experience that changes you and your perspective.
     I was blessed to meet an amazing woman today while getting a mammogram, but somehow I never caught her name. We just started talking during the procedure and the floodgates were opened. I was in the most vulnerable position (hard to be modest when you're half dressed) sharing my medical history and the next thing I knew we were having a full on discussion about love, loss and grief. I'm a cancer survivor & her husband passed away from cancer and as we talked the topic of grief came up. Our discussion inspired me to write about this difficult topic and I'm not sure why I didn't do this sooner. I believe that she and I connected for a reason and that reason was for me to write about something that so few of us talk about openly. Grief. What is it? What does it feel like? How do we deal with it?
     Grief is a normal process, but sometimes we don't recognize it. For myself, I didn't recognize it, because my husband had not passed away. Why would I be grieving for someone that is still alive? Besides that, I was in complete denial and shock the first year of his injury and I certainly can't leave out anger, sorrow and my personal pity party. These feelings are not wrong, but yet we may feel guilty about feeling them, especially when our spouse is still with us physically. What we fail to realize is that we're grieving for the loss of our future dreams, what we thought our life would be and the loss of our spouse as we knew them before. As someone that has written in journals for years, I didn't write in my journal for one full year after my husband's injury. Looking back, I think it was because putting it on paper made it real & I couldn't deal with that yet. I also like to control life, which I now know isn't possible. I put on a brave front that I was strong, didn't need help and proceeded to stuff all those bad feeling inside of myself. How naive I was keeping grief at a distance when it needed to be dealt with.
     In order to heal, we must grieve and the timeline is unique for each of us. Someone else you know may seem to be moving through grief at a different speed, but don't compare yourself with anyone else when it comes to grief. I have moved through the grief process quicker than my spouse and of course I want him to hurry up and heal, but it doesn't work that way. His hurts are different than mine, he is reminded of his loss everyday that he gets into his wheelchair and I can't heal those hurts for him. Friends may try to help and their intentions are good, but often they're uninformed and don't know what to do or say, which may lead to being insensitive. Don't let anyone tell you, "You should be over it by now" or "It's not as bad as it seems."
     Only you know what you're feeling whether that be: loneliness, fear, blame, rage, anger or guilt. One day you may feel that you're making great progress and then something triggers an emotion that sends you reeling back. As time goes on you're able to work through these emotions and slowly move forward again. I know from experience that even after 6 years I'm sometimes caught off guard by a wave of sadness or "whoa is me" moment. It happens, I allow myself to feel it and then I move on again.
     The most important thing I've learned is that talking with someone who "gets it" can be very therapeutic. I struggled with this for years, because in my mind, being vulnerable meant losing control. I've come to realize that I don't have to be the "strong one" all the time. What I have gained from opening up and being vulnerable is the knowledge that I'm not alone in my feelings and that usually the person I'm opening up to needs to hear my story as much I need to hear theirs. This is exactly what I experienced yesterday at my medical appointment. Two women talking openly about grief, acknowledging and understanding one another, being vulnerable and not judging where each of us is in the journey. I'll close with a verse I came across 3 years ago and it resonated deeply within me. Unfortunately, I don't know the author.

 "We do not understand:
Joy...until we face sorrow.
Faith...until it is tested.
Peace...until faced with conflict.
Trust...until we are betrayed.
Love...until it is lost.
Hope...until confronted with doubts."

It's ok to grieve the past, it's part of what makes you who you are today, but don't get stuck there and let it keep you from dreaming again. The wound may always be just below the surface, but it gets to a point where it doesn't overwhelm you anymore and when that happens you'll be able to find hope and dreams again!



     
     
     
    

Thursday, June 6, 2013

To work outside the home or not?

      I haven't worked outside the home for one year now and when I quit my job to relocate last year I thought it was going to be glorious. You may be thinking that it sounds ideal and for the first 6 months it was, but after that I started to get a little bored. Not bored in the sense of having nothing to do, because we all know as caregivers that there's plenty to do and little recognition for doing it. I'm bored in the sense that my mind feel's mushy, unchallenged intellectually, and to be honest, the housework and care-giving just doesn't make me feel valued. Maybe if I hadn't worked in the professional world for the previous 20 years then I wouldn't be having these feelings and maybe these feelings are about feeding my ego, but I know that I'm feeling them and need to sort through them.
    Two weeks ago, I saw an ad in the paper for a management position. Even though I'd been tossing around the idea of going back to work outside the home, it wasn't something that I'd been seriously pursuing. There's a lot of things to consider as a caregiver, because the decision not only affects ourselves but also our families. Working outside the home can be overwhelming or it can be a break from the stresses of home, while at the same time being a place where your efforts are outwardly recognized. Only you can decide such a personal choice. It's okay to want time away from home, but I don't recommend using a job as an escape mechanism. If you're escaping, then you may want to ask yourself what issues you're running from. I did this in the past, because I wasn't ready to deal with my spouse's injury head-on.
     I'm fully aware that some caregiver's may not have the option of working outside the home due to the level of care their loved one requires, but I'm fortunate enough to have the option. I need something to give me a purpose and challenge aside from being a caregiver, something to call my own and I miss using the skills that I acquired over the past 20 years. Looking back, I know that when I saw the ad and submitted my resume that I was somewhat impulsive, because I was desiring validation and an ego boost. Guess what? I got that ego boost when I received a call the next morning requesting an interview.
     Now that I've had an initial interview and the company has requested a 2nd interview, I'm in analyzing mode and trying not to make a decision based on emotion. My impulsive actions now require a thought process regarding the consequences of possibly accepting a job. My mind is racing: Am I considering this job, because I'm lonely? When my husband is sleep deprived and compensating by sleeping the day away, I spend the day running errands, going to church, grocery shopping and working out by myself. Who will maintain the yard? Who will do the laundry since my husband's in a wheelchair and the laundry room isn't accessible? Who will pay the bills since he's also in a constant sleep deprivation state, which leads to short term memory loss?  If I go back to work will I struggle to find balance while I'm focused on something other than my wounded warrior? Will I come home exhausted and resentful, because now I'm wearing my "Super Caregiver Cape" and trying to do it all? Maybe, just maybe, he'll take on more responsibilities while I'm away at work, but I don't want to count on that. Maybe I'm feeling a sense of entitlement to "have it all".
     Most likely, if you're like me, then care-giving is not your only responsibility. I volunteer, I advocate for wounded soldiers and caregiver's, I write a blog and I'm pursuing starting a non-profit.. These things are what I call "heart happy" activities. I have to consider the fact that if I take on a job that these things may drop down on my priority list due to time constraints and I don't want that. My personality type is to do everything in abundance. Sometimes I'm not good at creating boundaries with my time, because when I take on something, I take it on at 100% and that could result in not taking care of myself. Who's going to take care of me if I tackle too much? I believe this is a struggle for many of us. I don't want to become resentful, because I've already been there and done that. Sometimes we feel guilty when we do something for ourselves, although we know that we need to take care ourselves in order to be truly present for the people we love.
     At this point, I don't have all the answers. If you've given up your job in the past due to becoming a caregiver and you're thinking about going back then my best recommendation is to figure out what your motives are. Do something that fulfills you, propels you forward and makes your heart happy!

    
     
     
     
    

Saturday, March 16, 2013

Facing reality...again.





For the past 10 months, I've been feeling lonely. In some ways I feel like I'm single, because so many of the activities that Aaron & I used to do together we're no longer able to share anymore. When we first bought our property, I felt a renewed hope about the future & what we planned to accomplish. Even though I know his physical limitations, I had visions of us clearing the land together & exploring the 85 acres together. However, reality is smacking us in the face again. The photo to the left is our property that runs beside a creek. When we received an aerial survey on our land last month, we realized that it's part of our property. I was determined to clear the brush & find the old fence line. I pulled debris out of the creek bed, cleared sticker vines & removed small trees. The photo below was taken after 8 hours of manual labor, which I did alone. It would've been great to have Aaron by my side helping in whatever way he could, but he can't in his manual wheelchair, so I took these photos to show him what I did. Sometimes I feel guilty coming back after working the property & telling him how much I accomplished & how pretty the land is, but I don't know which is worse: sharing my enthusiasm or keeping quiet.
     We purchased an ATV for Aaron to get around, but the reality is that an ATV can't get through thick brush. It's too wide. For those of you that grew up in the country, you may be thinking, "well, of course not" but I grew up in the city & had no idea what country living would be like. Honestly, I think that Aaron has had a reality check too and it sucks to see him experience that. He thought he would be able to do more. He told me that he feels guilty when I'm outside working on the property & he can't get outside to help me. It leaves him feeling less capable, less like the man he was before his injury & frustrated. I overheard him on the phone recently telling a friend about the property & how much there is to do. Then I heard him say, "I bought all this property and then reality hit that **it I'm paralyzed."
      How do you recover from events that have happened to your body, mind  and spirit? How do you connect with your loved one when the activities that you used to do together are no longer an option? What do you do when you have begun to move forward, live life again, but your loved one isn't able to?  I've been asking myself these questions for years now. I wish I knew the answers.
     The only answer I have for now is that we're learning to ask for help. We're blessed with some amazing neighbors, that are in their 70's, that helped us cut up a couple felled trees. A couple of Aaron's friends came out for a week to help clear some brush. A group from our church is coming out in April to help me burn 45 brush piles that I cleared off the fence line & to stack the wood from the felled trees.You can only call in so many favors though before people get tired of helping. I'll be honest though, I'd rather have Aaron do all these things with me. I know that he'd rather be a participant than a spectator, because life is better when you're part of the action. I wish that he could access the places that aren't accessible with the ATV. The only solution is to purchase a "track chair" but at a cost of $15,000 and a V.A. not willing to purchase one (its considered a recreational item) it'll be a long time before that happens. Never mind the fact that he has fallen regularly when trying to maneuver his manual chair around in the dirt & rocks outside & it's comes down to a safety issue. I get it. I understand that the VA has a budget to keep. I'm hoping to find a non-profit to assist us, which I know is asking a lot, but I have faith that something will come about.
     So, I apologize that this post is not my normal upbeat, brighter side of life perspective, but it's simply that I'm facing reality...again. I don't like it, but I will press on like I always do. One day at a time in this life I now call a scavenger hunt!

P.S. If you're curious about track chairs (they're really functional) go to:
http://www.actiontrackchair.com
     
    

Thursday, February 14, 2013

HAVA Hunt




Left  photo is Aaron & Heath trying out the track chair. The photo below is Aaron and I inside the lodge. Yes, I'm wearing a camoflouge T-shirt and it's the first time I've ever worn anything camoflouge. I even sported a camo ball cap at one point, but that photo I'm not sharing!

Aaron hasn't been hunting in over 4 years primarily due to accessibility issues, but last week that changed when we were invited by HAVA (Honored American Veterans Afield) to go hunting in Del Rio, Texas. The hunt was located on a 14,000+ acre ranch. Can you even grasp how big that is? In the SW region of Texas all you see is scrub oak, cacti and big, white rocks and the rolling terrain makes it breathtaking. You may be thinking that cacti and rocks are not wheelchair friendly and you're correct. However, in this case Aaron was provided with an Action Track wheelchair, which has tires like a tank. We've tried in the past to get the VA to purchase one, but with a hefty price tag of $15k we haven't been successful. As soon as he got into it he was taking off to see what kind of trouble he could get into. It was a blast seeing him going over the rocks at full speed with a smile on his face instead of strain & frustration. Nothing was stopping him, not even steep downhill terrain!

HAVA's coordinator, Heath, didn't waste any time getting the group out to hunt. After a delicious lunch, the "boys" went out to hunt and the "girls" went out in the Rover for some safari style sight-seeing. Rock Canyon Ranch offers big game hunting so they have Zebra, Buffalo, Gnu, Whitetail Deer, Black Buck, Orex and more on the property. It was amazing to be up close to these beautiful creatures that are huge yet agile. The boys went out with individual guides and Aaron was partnered with Seth. At one point during the long weekend, I went out with Aaron and Seth to see what this hunting thing is all about. They were using an insulated ground blind, which was a nice set-up if I do say so myself. According to Aaron and Seth this isn't the typical hunting amenity. I was told to use my hunting (quiet) voice and after being reprimanded twice I decided to sit quietly and take in the scenary. Ironically, they talked more than I did and they say women talk a lot. Not always!

Each day the boys went out to hunt at 5:30am and again at 4pm with downtime after lunch. With the amount of food we were consuming we needed a nap. On the 2nd day Aaron came back with a doe weighing close to 90lbs. In Texas, this is a good sized, mature doe. I say this, because in some parts of the country the deer are bigger and I wouldn't want to make him look bad. Ha Ha. I was thrilled that he got a doe, because what I failed to mention earlier is that this hunt started on 2/7/13 which is the 6 year anniversary of Aaron's paralysis. I was happy that a bad memory could be replaced with something positive to focus on. When life has dealt a tragic blow to your body, it's easy to be distracted by what you have lost. Learning to focus on what you still have is crucial to healing, no matter what your circumstances are.

Over the 4 day hunt, we spent a lot of time eating, connecting with other couples, exploring the property and hunting. We had no cell phone connection, which took away any distractions. There was no pressure to participate in anything you weren't interested in. If you wanted to read a book while everyone else went out exploring then that was okay. Many organizations that provide retreats tend to pack your schedule in order to provide a lot of resources and activities, but this can leave you downright exhausted. I'm not saying that this is always a bad thing, but it was a nice change of pace.

On the last day of the hunt, Aaron shot a second doe. Fortunately, on the way to Del Rio, we stopped to buy a 30 gallon cooler. We almost went with a smaller one to save money, but thank goodness we went super-sized so both doe could fit in it. We already had visions of venison chili, jerky and sausage dancing in our heads. Each veteran got at least one doe or buck, so not one family in this group was going to go hungry. These guys had a great time hunting and also connected with other veterans that could relate to what they are experiencing after injury. Many veterans live in rural areas, which makes it hard to find other veterans to connect with. This is why non-profits like HAVA are beneficial and in their own words, "The ultimate goal is to increase their confidence and hope for the future by reconnecting with their love of the outdoors and the American traditions of hunting and firearms." I couldn't have said it any better myself.

A special thanks to:  Kat & Ken who provided the ranch, Heath with HAVA, John & Stephanie with XS Sights and Seth who provided great conversation and assistance to Aaron during the hunt. For more information about HAVA go to www.honoredveterans.org  For more information about Rock Canyon Ranch go to www.huntrcr.com







Wednesday, January 16, 2013

Intimacy-let's get it out in the open.



INTIMACY. What crossed your mind when you read that word? Did you instantly think of intimacy in terms of sex? Did it make you uncomfortable? Is it because ever since your spouse was injured everything has changed? Although many caregivers talk about every topic under the sun in person & on Facebook, it seems that no one wants to bring up this touchy subject (excuse the pun). I hope you'll keep reading & realize that you're not alone in dealing with this uncomfortable topic.

What does intimacy look like to you? For me, it encompasses more than just the sexual act. It means sharing my emotions openly with my spouse, not fearing judgement & also allowing myself to be vulnerable. For others it may mean something completely different, because it depends on your circumstances. A caregiver friend of mine, whose husband has a TBI, once said that intimacy for her is sharing a cup of coffee at the kitchen table in the morning & having a clear (lucid) conversation with her husband. In other words, it depends on your specific circumstances and the type of injury your spouse sustained.

I wanted a varied perspective from caregivers whose husband's have different injuries than my own so I posted a question about intimacy to a caregiver group. The responses opened my eyes to some commonalities as well as differences regarding intimacy after injury. My husband is paralyzed & has limited mobility from the waist down. Figuring out how to be intimate after his injury was an exercise in frustration, humility and patience. It felt awkward to hug him in his wheelchair from a leaning over position. It was the same with kissing or holding hands while walking/rolling, because he needs both hands to push the wheelchair forward. It was extremely difficult to get past "how things used to be" and getting comfortable with one another again didn't happen overnight. One commonality among caregivers is the feeling of being more like a friend/nurse versus a spouse/lover. This is partly due to being together all day, which takes away the "distance makes the heart grow fonder" theory. That in conjunction with taking care of your spouse's personal needs equals a feeling of parenting versus wife. The following are caregiver responses which I edited for length & privacy:

* Intimacy has greatly changed, because his TBI tends to make him more affectionate or he plain ignores me. It depends on his pain & stress level that day. It takes it's toll on us, but we have managed to not let it break us.

* Due to a blast injury that damaged that whole area it's very painful for him to have intercourse. We're very affectionate holding hands, kissing & foreplay, but the actual act we don't do. He hates the fact that he isn't the man he used to be in the bedroom & tries to make up for it.

* Intimacy for us is different than our friends. If you saw my husband & I walking down the street you would think we were friends, because we never touch or kiss in public. He's too 'on guard'  for us to have those moments. Our intimate moments happen at home on good days. On bad days intimacy disappears.

* He has a flat affect due to his brain injury & can't form his own opinion so he's like a shell of a person. He has lack of memory so he doesn't truly understand that I'm his wife.

*Newlyweds probably dream of it, but an extended arrangement takes its toll on intimacy. My husband has severe PTSD & there is so much together time that it makes it difficult to transition into intimate time. Especially at the end of the day when he has played games all day & I have worked my tail off all day. It's difficult to feel sexually attracted to a man that behaves like a boy.

*My husband's has a TBI and there's no emotion or too much emotion when it comes to intimacy, but also the forgetting part is so hard! He does love me & adore me, he lives to make me happy...but he forgets & is unaware that he doesn't do anything to show me.

*He has ED (erectile dysfunction) and his "part"  has its own agenda. He doesn't feel attracted to me or any beautiful woman, because whatever part of him that is supposed to be attracted just doesn't work anymore. So that's why he doesn't initiate anything: not love, not closeness, not sex. It's a very lonely experience.

I hope that one or more of these responses resonated with you. As caregivers, we need to talk about these difficult emotions with others that "get it" and people we trust. I believe that communication leads to healing. It's easier to suppress our feelings and fears, but it isn't the healthiest option. If you're dealing with a recent injury, please know that there is hope & that intimacy isn't just about the sexual act. You have to decide for yourself what intimacy looks like for your unique situation. So take that time to redefine it and know that it may involve lowering your expectations.

P.S. A special thank you to the ladies that took a leap of courage to share their personal scenarios. It opened my eyes and I hope it did your as well.

For an insightful video from Marshele Waddell Carter on this topic go to:

http://www.cbsnews.com/8301-505263_162-57558709/intimacy-lost-veteran-and-his-wife-speak-out-on-hidden-toll-of-war/