Monday, April 4, 2016

Caregiver Interrupted

“The only real battle in life is between hanging on and letting go.”
Shannon L. Alder
I hate the terms that come with death. For instance, the word "Widow" makes my heart shrivel up every time I say it. However from past counseling, it was a way for me to accept it a little at a time, every time I said it. The counselor who is also a Widow, told me she also had a hard time accepting it and it was a coping mechanism that I could try. I guess I understand it and, it has eased the pain some each time I admit it out loud. Well....I don't stutter and sputter trying to get past the w but, I still find I whisper it out sometimes.
Nothing is worse though than the term "Caregiver Survivor". I can't even remember where it was coined, why it is there to begin with, and how I was referred to it. I'd rather deal with the phrase "Surviving Spouse". I am not angry over it but, those two words just make one die a little each time inside when you do hear it. In my mind and heart, the term "Caregiver Survivor" sounds like I survived my care giving but, he didn't? I know, I's guilt talking back at me. Still, it does make one think, no? When you are already feeling at your lowest, a complete failure as a spouse and supposed to be the responsible one for doesn't help the guilt that you feel when someone says this.

If there needs to be any name given for should be Caregiver Interrupted. That's how it feels some days. One day I was there, he was there and the next....just gone. No easing into it, no notice, no being dropped by anyone...just gone. How does one get back to living after this? I am struggling with just life. I have been for a while now. I have my good days and then there are the days where while the kids are gone, I spend my time hunkered under the blankets and trying to ignore the tightening around my heart. There are the nights where I stay awake in my bed running things over and over in my head until I finally just have to get up to escape my own mind.

I still have my Christmas tree up for crying out loud! I am so humiliated by admitting that to anyone, especially with so many readers. Go ahead....judge me. Or you could be jealous and congratulate me. I can't tell you why it's still sitting there. It's not my regular tree, it's not my regular ornaments but, it was all we could handle as a family for our first Christmas without him. It was a tree that I picked up inexpensively for the kids to put their dad's ornaments on so we had a special way to have his traditions with us. However, everything was so hectic with trying to move, the holidays and just being freaking exhausted from the year itself that it was all we could do to get this one up in time for Santa to make his appearance. I can't pinpoint why I have it still up.

Nope....I didn't decorate it with some hearts and chintzy cupids for Valentine's. I didn't slap some Shamrocks on there to justify March at all. I did though....almost think about hanging some plastic eggs just so we would all feel okay about it but, after a family pow wow.....we all said "screw it. It stays up just as it is." The good thing about where I moved to, it's close to the "North Pole". So after traveling through, it was a breath of fresh air to see everyone still had lights up, trees up at the end of February, and no one bats an eye. Now, we aren't in some redneck state where the joke remains to be unheard upon ears of those who just leave them up all year long. Still....I always took my tree down; prompt and without any major ordeal. To have this now, is almost defeating but at the same time, exhilarating for not following the standard. There are days where I make my bed then turn back around, go back in and unmake it. Just because.

Some days are rough on me. In my best Drill SGT impression, our days start at 5:58 a.m. Some days my middle son, is just like his father and although a major tickles me at the same time. It's "I'm uuuuupppp, Gahhhh!!" with the same snarl, the same dirty eye roll and the frantic hand motions that alert someone that the light is apparently going to fry them up like no Vampire movie ever portrayed as well as they do. Times like these, especially those that the light goes back off and bodies disappear back under a pile of blankets, calls for dirty deeds like letting our dogs go in and wake them up. Nothing moves them faster than an old Chihuahua with smelly breath licking you to death!

Mornings are hard for me. It took me a while to pinpoint what exactly bothered me about them. I used to spend four hours a day trying to wake my husband up. Yes, four hours. Most of that was medication related and I suspect the rest was depression. I would get the kids off to school and with a cup of coffee armed in my system, I would begin the constant battle of fighting the Sandman who was doped up enough for a third world country. It was every day from Monday through Sunday. Sundays usually meant I was off and he would sleep in later than normal but, it still required a stern "Honey. Honey, you have to get up!". The battle would always be to rub his back, help him take off his CPAP mask and try to navigate it back to the night stand correctly. Pull the covers back, push slightly to bend him upright and then he would say "I'm up, honey. I'm awake". Mmm hmmm. As soon as you walked away? That turkey was fast asleep again! Some days were so bad, there were idle threats of going back to retrieve ice water and dumping it on him especially on days where he absolutely had to get somewhere on time. I never had to do that but, it used to make him wake up just a little more. Some mornings I was met with the "beast", there were days where my "Pod person" would throw the pillow at me and proceed to growl fiercely (pfft as if that would scare me!) and there were mornings that all that came from his mouth were a litany of cuss words that would shame even the dirtiest sailor. But...there were mornings.....mornings where he would throw the covers back, pull me down into bed, cover us back up, cock one leg over mine so I couldn't move and all with the plea of "Can't we just go back to sleep, mommy? Please honey...I am so tired."
I know he was.
 I just didn't know exactly how much.

Food was a challenge. One thing I always made sure was that he ate. Even when he would forget, or said "I'll get something here in a bit". I would always just ignore that because I knew better and he would not eat if there were no reminders or his sugar would drop too low. Cooking for me, was one way that I could show my love and dedication to my family. Whether it was a secret family recipe that was a huge success, laughter over the first (and last) bad meal I ever concocted, or a newly cracked restaurant super secret recipe....he always would pat his belly, take his plate over and kiss me with a "That was gooood mommy, thank you!". There were dishes that took a lot of work and time but, in the end? It was worth it all. We struggle now with dinners. Silly huh? The boys and I just don't eat as much, and I end up throwing some things out if the leftovers don't make a second pass. We avoid his favorite foods because we miss him that much. We try to eat new things like fish, asparagus, and Bison meat just so we can look for new favorites as a family. Some days I am pleased I still remember recipes because my memory is suffering horribly. Other days, it's a complete disaster due to cooking at such a high elevation. By the time I sit down, and we go around the table to talk about our favorite part of the day...I am heart sick because I know at the end of the meal....there will be no words from him. No kiss. No wondering what might be for dessert if I decided that week to make him something special.
How I miss that lazy smile and kisses....the surprise look when he found that I had made his favorite yellow cake with chocolate icing.

It's not just living without him that we notice so strongly. We feel like we have been abruptly picked up by some unknown force, kicked out on our asses and attempting to try and find our own way. It's huge and subtle reminders.  It's knowing we can't go home, it's knowing family who we trusted hurt us so horribly bad, and it's a complete loss of an identity. I feel like I can't really talk to my caregiver friends in the same way because to me, I will always be a reminder to them of what could happen. They're problems I understand fully but, I also have a new perception about some of the stupid things that we take so seriously. My problems and hurt, are different so I don't have anyone who just silently looks at me and gets it. No one who just has this unspoken understanding to share with me.
How does one convey to another person that your soul hurts?
It is a roller coaster from Hell when you have spent all that time being isolated, set in motion by moving parts that we established just to get by. You realize you have all this time and nothing to fill that empty space yet the day goes by so fast, you have no time at all. You balance on a tight wire made of self doubt, stumble with the loss of someone who knew you inside and out, and falter blindly at new starts because the old way is just engraved so deeply into you. Schedules, patterns, routines, set times...all gone. It's also like my oldest son stated "You not only lose your identity but, you also question others" and it's true. Friends we thought were gone, family went by the way side and you look at things in such a different perspective that you try so damn hard not to yell "OMFG! Why are you doing this? Why did you say that? If you only knew....".

Yes....If you only knew.

There are days where it hurts so bad that I can't think straight. It can be a simple smirk from my 9 year old that he looks just like his dad. It could be songs playing on the Ipod that were his favorite or the sudden thought of "I have to remember to tell him because he will love this!" only to face the crashing knowledge that you can't. Some mornings, I am so lost while drinking my coffee that hours seemed to pass and I don't even realize it. I try to do things that I have never done like going on a paranormal investigation, go to places that we had talked about, and try things that are close to home like gold panning. It is when I feel the closest to him. I am concentrating on doing more for the kids like chaperoning school field trips, get outside and play more and trying to remind them that daddy loved them very much. It's on those days, I feel like there is an empty void that is half of my soul.
Losing your job as a caregiver in the way that I did is earth shattering. It's not an easy job with endless hours, the dread of dealing with all the bad, the high of when things are going great and let's not even tackle the subject of stress. I know many complain about loss of pay, loss of insurance if you have it and others complain that others are even on the VA's Caregiver program. I have heard it's going all to hell and many are losing that benefit. As I pointed out to several officials while in Washington, D.C. it's not just the pay, insurance, having the ability to finally be heard and have an active role in your loved ones health and progress. It's a sense of being acknowledged for what you are doing, it's an identity that none of us wanted but, that we gave our all into doing. It's something tangible that we can identify ourselves by when it used to be a career, or a part-time job or even just a stay at home parent. The check was a way to relieve the stress in our Wounded Warriors life and trust me, civilians will never understand how much that means to all of us. It is also the only way we had some input and control on a situation that is otherwise chaotic at best. It is the only option we had to define us when other descriptions no longer fit.
We lose so much of ourselves in the process of care giving that it's somewhat a reinforcement when we are acknowledged for what we do. I don't know really how to explain it any better than what I have. Overall, I think it is a shaky but there nonetheless, bridge of sorts that bonds us to our family members. I worry about my friends all the time. I wonder if they get cut from the program, how the effects will impact their entire family as well as their mental health. The ripples from that wave crashing down reaches far beyond than just financially. I wished I had been dropped, and that I didn't have to go through this now. At least I could say that I did my job to the best of my ability and understand that it's policies, red tape, indifferent suits with no idea of what I am doing day to day and at the end of the day....I would still be going to bed with my husband. I wonder though, if the powers that be that run the Caregiver program....really think about how this program impacts us?
Caregiving often calls us to lean into love that we didn't know possible. 
-Tia Walker, Author
There wasn't a forewarning, no letters or decisions that you could just put on your best defenses and file an appeal. This.... it was just....interrupted; like a boulder falling from the sky dropping down in the middle of the only path you can take. You look to sidestep, and you can't. You think you can just climb over it but, it's too damn big. You are just suddenly stopped with "What do I do now? Do I attempt to go forward or do I just give up and go back the way I came?". dawns on you that you can no longer go back.
I can no longer go back......

I met a man who is everything my husband wasn't the last eight years since Iraq. He was a gentleman, not overbearing or obnoxious, adored kids, down to earth, had no medical conditions (Hell yes, I asked!) made excellent money and financially stable for retirement, traveled a lot for fun, no military service and not even a member in his family served. The kind of guy who just wakes up on Friday mornings and says "let's go to Mexico" and by God, he does. We talked off and on for two weeks before he proposed that we have dinner together. I balked, I made excuses, and I fought internally as if I was embarking on my first affair while still married; something I had never done. It was just dinner not exploring space! What the hell was my problem? He planned the perfect first date with much thought put into it, with laughter and excellent dinner choice. He opened car doors, ordered my meal for me and chose the perfect drink because he knew I liked margaritas and it was one I had never tried. We walked and talked in a town with antique shops while we window shopped. He even put me closer to the inside of the sidewalk because of safety concerns (cars crashing into the sidewalk) and that tells you how old fashioned he was. He washed his own clothes, loved to clean house for stress relief, loved to cook and painted as a hobby. Perfect huh?

I struggled. I found myself listening to him talk about civilian life. How he loves to travel and just make weekends at a Bed and Breakfast anywhere. Concerts, live music fests, trying exotic foods and new restaurants, and something called "meet ups" for those who like to brew their own beer and barbecue. As he talked, I just felt myself slip further and further away from the conversation. I felt like I had a mouthful of cotton while trying to spit out "Oh yeah?", "Mm-hmm" and "Oh I can agree on that". I just felt like I had nothing to talk about or at least anything that he would ever understand. He didn't know who I really was, what I had been through other than being a widow, or that my favorite thing in the world was playing Gin Rummy with my husband, drinking beer while listening to it rain outside and talking smack to each other. He didn't know what an MRE was, or what FUBAR meant. I realized then how altered my life really was. Here was this someone... someone who thought I was "cute as a button" and liked my sense of humor, sarcasm and asking nothing in return that took a lot of logistical effort.

Someone who, twenty five years earlier, you would look at as good prospect for marriage. Someone who took their time and really put some thought into a perfect first date with a woman that is scared to death and hadn't been on a date in 15 years. How alien I felt sitting there scanning for exits so we could escape easily. How awkward I felt because I was scanning the room looking for anyone that might change the mood. I constantly thought how the noise level was too much and how that I held a baited breathe waiting for the explosion that would surely come from this man across from me. How fast I hurried to order, and hoped it would get there fast so I could wolf it down and get my husband back to his comfort zone. Walking through town and window peeking while we discussed antiques, I instead paid attention to the reflection of passing cars, looking for anything that might look out of place and pose a possible threat in my husband's state of mind. The moments when I could relate I would say "Oh yeah! My husband loves that show." as if he was still here and I was still with him. How I felt the guilt that here was this man who didn't want anything but, my attention and trying to win my favor as he phrased who didn't ask to file an appeal or call that damn so and so and tell him that we didn't have to talk about the latest stunt pulled by a politician or what is the latest issues among our military community.

Yes....he was one that I had nothing in common with.
One that I could not find a single thing that wasn't Military or Wounded Warrior to talk about because that's all I know now. 
I felt guilty about even going out with him. I hated I spent so much time on hair, makeup and clothes not to impress him but, just to give me some kind of outer shell that would hide my fears and give me a little confidence. A failed attempt at best. I felt even more horrible when after the next day, he texts "I really enjoyed our time together and I would be honored to have your company next Saturday evening". Guiltier when the 15th text message read "It's OK to live and go on with your life. He would want you happy". Yeah, I never responded back.  I didn't want him to know that he didn't take my breathe away like my husband did. That sometimes imperfections are sort of like a tie that bonds two people together. That we could never have the same kind of experiences that I am familiar with. That he simply wasn't...the perfect man I wanted after all.
How could I admit to him that I felt the loneliest while looking at him smiling back at me, all while thinking of someone else and, wishing with everything you had that it would be your husband sitting across from you? 
I am at my most comfort level within the wraps of an enduring cocoon that the military family and Veteran community gives us. I can talk to a multitude of Privates, Tops, Officers, Commanders and multiple star generals. Politicians? No worries. They put their pants on the same way I do. I can shoot the shit with the hardest of combat Veterans, navigate the VA and it's mishaps, and problem solve all while tackling family. I could stand up for what is right, challenge you to put your money where your mouth is when it comes to supporting our Veterans, and stand in with a clerk at the VA when they try to turn away one of our guys that desperately needs to be seen. I was used to the Anniversaries of so many of our guys, knew when news would set him off, and knew when to wake just before he slipped into a nightmare.
There is no one to chase away my nightmares. 
I can't even hold a conversation that feels normal anymore. You know how we all talk about finding our normal, or a new normal? It's worse now. I struggle with finding myself and establishing a new identity that makes sense of this life we are living now. How it feels to be so suddenly lost and wondering how in the hell did you miss so much of the outside world because you spent it closed up. How do we as family members going through this, even begin to explain to someone that no, you haven't been to a concert because there are too many factors that would do more harm than the benefits. Or how you haven't been to a movie in a theater in years. Or explain that your husband never took you out to eat or did things like normal fathers would do for their kids because he couldn't handle it? How do you explain what the hell you have done as a job? How does one even begin to explain PTSD or TBI and while you are highly educated on the subject, it comes across as it was the only thing in the world that you focused on and didn't live?
The truth was the only thing we focused on. We no longer have a grasp on ourselves period. 
I miss and I don't, the adrenaline rush and coffee that fuels most of our lives. I miss playing the hand from Hell, knowing the VA House always ends up winning but, you bluff your ass off the whole time. I miss the fight sometimes because that kept me from focusing on the fact he was slowly slipping away from me. We all grieve every day and perhaps just don't know it. You grieve for what used to be, what is and what will be.  I sometimes think we grieve for what we have lost ourselves as we truly begin to not recognize who we were. You also mourn the future losses when faced with children and other family members who also have lived this life. You mourn when something new happens and is exciting yet, your children don't know how to react because that is strange and foreign to them. You mourn the losses that you see every month, the daily slips and cover ups that our Veterans successfully hide even though you know the truth as it begins to add up in staggering figures. It is a process that killed me slowly every day; watching helplessly as you see their health just deteriorate and not being able to do a single damn thing to help. 
Don't get me wrong, there were days where I half daydreamed of what it would be like to get back to the real world, have a normal 9-5 job, a marriage that didn't have major obstacles in it, and the freedom. Who honestly hasn't? It's can admit it right now to yourself and please know, there is no judgement reserved here. If you say no, I would call the bullshit flag to be thrown down. Looking back now, I am ashamed that, that was my daydream. Looking turned out to be nothing that I ever wanted and now I don't know what to do with myself. 
So here I sit, in my husband's Army basic training sweat pants.....contemplating what to fix for supper that won't upset me and wondering what I will do when my older than dirt sweat jacket he bought me, finally bites the dust. Wondering if I should start to decorate my home, or try to learn how to knit, or just run away. Or when the "letting go" will begin as you are tired of still hanging by the tips of your fingers. Regardless of what I do, the end result will be the same. At the end of the day, I will be going to bed tonight with a pair of dog tags that reminds me of a life that is gone and a life that I have no idea how to live without him. I figure that as long as I don't get weird, mean and cranky (like a neighbor of mine) and have a zillion cats walking around, then I am doing better each day...even if I can't see it. Well at least for me that is, is a step up from where I was a year ago. 
The Christmas Tree? Well, that may be another story.......