Thursday, July 14, 2011

Caregiver Support!! Woohoo!!!

We got a wonderful phone call today. Caregiver support called to do an assessment on us. Apparently our AW2 passed our name along as a couple who deserves caregiver support because of the amount of care I am required to give my husband. It is a very comprehensive process, but the lady with whom we spoke believed that we are definitely eligible. She is passing along our information, and they should roll us into the next step of the process. Basically what this will do is pay me a stipend for the amount of care I must give my husband. Since I am not able to work away from the home as much as I could if he was not injured, this will supplement. She said I should get paid the rate of a Certified Nursing Assistant, and the number of hours for which I receive compensation will be determined by the level of care that they deem necessary for me to give him. In other words, if they determine that he requires 25 hours per week of continuous care from me, then that is the amount for which they will compensate me. She said that basic activities of caring for him that I do simply because I am his wife will not count. It is only compensation for the time that I must spend helping him with daily living activities... i.e. walking, eating, taking his meds, bathing him, etc. This process requires doctor's appointments and recommendations, phone evaluations with me, and eventually a home visit to determine if I am competent enough in his health care needs, aiding with physical and mental difficulties, and dealing with the stress of it all to be technically listed as his official caregiver by the government. If we make it through this process, a tremendous amount of stress will be lifted off me. These are all things I must currently do, but now there is the possibility of receiving some assistance for them. If we qualify, they will do quarterly home visits to determine if we are still eligible, and an annual comprehensive re-evaluation will be performed. Please pray that we make it through this entire process. It could be a much needed relief for us.

Other than that, today was a normal day for us. Nothing much to report on. Yesterday was rough for him. The pain was primarily in his back, so we assume it was from the front that came through our area. When a front comes through, he gets the feeling in his back all over again of having those shattered vertebrae. Some days are worse than others, but the bad ones keep him from even rolling over in bed. Luckily he was able to make it from the bed to the couch yesterday. He spent the entire day on the couch, though. I wrote throughout the morning, did some VA related research, worked in the yard, cleaned the house, and then wrote some more. All the while he just laid there. The more time that passes, though, the less guilty he feels about those days. He used to feel so bad for not being able to help me, and I'm sure I didn't help the situation any. It was so long before I understood that he just physically could not do it. Now, though, I check on him every 30 minutes or so, get him whatever he needs, and continue on with what I'm doing... singing and dancing my way through it to try to give him a little sunshine. It makes me feel special... needed and important.

He and our Jack Russell mix, Russ, are konked out right now on the couch. I'm going to clean up the kitchen, try to get a little work done on my book, and pray that tomorrow can be a good day for him. It looks like it will not be quite so scorching hot, so I may try to get him out for a little walk on a hill to reverse that atrophy.

Wednesday, July 13, 2011

Among Heroes

We had no clue what to expect when we went to the VA appointment yesterday. We had received a letter Saturday saying that we had an appointment on Tuesday. We had no knowledge of it prior to that letter. So we did not know what it was about, if it would take an hour or all day, what types of tests they were doing, etc. It turned out to be the first in a series of appointments. This one was with a psychologist, and we have primary care physician, social worker, TBI institute and pain management all coming up. Our visit went well, and we both felt good about me being there with him to explain some things that he cannot explain very well about himself.

We had plans to go to the Arkansas State Police Honors and Awards Luncheon at 11:30am with my parents, but we did not know if we would make it out of our appointment in time. We were so glad when we did, but we also realized that Tim did not have the appropriate clothes. Since it would take too long to drive all the way back to our house to change, we stopped at a store to buy him some. I was so glad we did. He looked SO GOOD in that outfit, and he was very proud wearing it. He felt confident and held his head high. It means so much when I get to see him exude that type of confidence.

The luncheon was good, and we got to visit with a few of the guys that Tim had flown in the eradication program. It was nice to see some people we hadn't seen in a long time, and it was warming to feel the pride in the voice of everyone who spoke, from the ASP Colonel to the Commissioners to the State Governor. What got to me the most, though, was hearing the acts of heroism performed by some of the men that received awards, and then knowing that we were in a room full of others who would perform the same act if put in that situation. Arkansas Game and Fish Officer Michael Neal was the main one in attendance that Tim and I could not quit discussing later. When two West Memphis police officers were shot and killed by a father and son duo in 2010, Neal was the one to bravely ram his truck into the vehicle of the suspects. At the time of him doing so, the suspects were shooting from their vehicle toward a police unit, where they struck and injured the two men inside. Neal shot and killed the father, while taking numerous bullets to his truck. He shot at the son, and it is my understanding that he struck him as well. Neal was the reason the suspects did not kill any more people than they did. He is a TRUE hero on the homefront.

Because Neal was raised in the funeral business (and funeral directors around Arkansas tend to work together and know each other well), my dad and brother were already familiar with him. Tim and I walked over as they were congratulating him, and we spoke to him for a few minutes. We were amazed by his humility. The award he received yesterday was his 33rd for the incident, and he is scheduled to receive another this Saturday. Yet, despite all the attention, he speaks as someone who just did his job. He does not boast about himself, he does not tell you what he did without being asked, and he does not pat himself on the back. He gives equal credit to the many other men and women in his line of work, claiming they would do the same thing in the same situation.

Officer Neal, I know many would. I know we have some true heroes living among us. But you acted in a way (and continue to act in a way) that epitomizes the word "hero." Thank you to you, and thank you to all the men and women who put their lives on the line daily to ensure our safety.

Monday, July 11, 2011


My stepson's mother is expecting a baby any day now. After talking to his mother Saturday and her informing him that she was certain she would have the baby that day, he decided he wanted to cut his weekend with us short one day so he could be with his mother when she went into labor. We completely understood, and we didn't blame him one bit. So we drove him home Saturday night. Since we had plans for him on Sunday, we tried to figure out what we would do now. We came up with a perfect idea... an entire date day! We would get up early, hit the early service at church, and then head up to the lake. We planned to find a quiet cove and enjoy a romantic day of just being googly eyed over each other. We got our things together that night, and we went to bed earlier than normal so we could be well rested for an entire day of fun in the sun.

Sunday morning I got up early, made coffee, did my morning internet rounds, and waited for my husband to crawl out of bed. An hour passed, then two, then three. After nearly four hours I decided to check on him. I assumed he must just be exhausted from the full three days that we had spent with his son. We had packed in as much action as we could. Because Tim had been hurting bad through two of those three days, he had forced himself through alot just to do these seemingly basic activities. When I went to check on him, though, I quickly realized that our plans must change. It was "one of those days." He finally made it to the couch. I began working on as much as I could, knowing that there would be no lake trip. I figured if I could get alot accomplished that day instead, then maybe we could make the lake trip on Monday. After an hour or two on the couch, I finally convinced him to go back to bed. I massaged him until my hands could no longer go, and he drifted off to sleep. He slept for another four or five hours, and then he awoke to much less pain. We enjoyed the evening together, grilling out and both curling up on the same couch to read.

We woke up this morning to more tolerable pain. Our alteration of plans worked perfectly. Since I had accomplished alot on Sunday, I did not feel guilty about spending an enjoyable, relaxed day today. Mondays on the lake are far different from Sundays, so we had the option of many empty coves to google and goggle over each other. The sun zapped him, but all in all he did great! He actually asked me at one point if he could attempt knee-boarding, but I discouraged him since we had nobody else with us to help if something went wrong. For him to ask, though, was a good sign.

Tomorrow morning is our VA appointment. We're hoping all goes well. For now, though, I'm signing off the computer so I can curl up with him and thank God for the wonderful day we both had.

Sunday, July 10, 2011

Setting the Record Straight: To Work or Not To Work

It has been a little while again since my last post, and again I apologize. Summertime is full of action, and it seems harder to find the time to post. We have been enjoying as much time with my stepson as possible. He is such a source of strength for my husband. When he is here, Tim pushes so hard to be able to do activities with him. They are two peas in a pod, and it is absolutely adorable to watch them together.

Although I am still working about the same number of hours, I have backed off on my daily work some lately because of working on my book. That means less regular income, but it also means that my book is not adding additional work hours on the days that we have my stepson. I usually still work a few hours each day when he is with us, but I try to adjust my schedule so I can spend as much time with him as possible when we have him, and then I work more on our days without him.

Despite the working and the fighting for my husband's rights and the waiting on him hand and foot when he has bad days, putting my stepson at the top of our list of priorities has apparently led some individuals to putting my husband and I down for not having regular full-time jobs outside of the home. When they see how much time we spend focusing on my stepson, they decide to tell others that we are lazy and don't work. So, to set the record straight, I work an average of about 50-60 hours a week. No, it is not in an office building somewhere. No, I do not have to stick close to a set schedule that a boss gives me. No, I do not put it ahead of my family. My husband and stepson come first, so I work on hours that interfere with them as little as possible. I spend long days working when I can, making up for the days that I need (and want) to focus on them and devote to them. In addition, my husband has days where he can take care of himself, but he also has days where he cannot. The cousin of one of these naysayers even mentioned recently that she was impressed with how healthy my husband looks now that he has been married awhile. She said he was too thin the last time she had seen him, which was before I came along. True... he was. He got down to 125 pounds (he now weighs 180). When he cannot get out of bed, I take care of him. When he lived alone and could not get out of bed, he just went days without eating. Being his caregiver does not mean that I must do for him all day every day. He has good days. But it does mean that I must drop everything to take care of him on his bad days, which some weeks can be a full-time job in itself. In addition, I scratch, dig and claw through VA policies and mess trying to find all the help he needs and deserves. I make contacts, I read and read and read, I apply and reapply... and the list goes on. As far as daily duties, there are many that I will not mention out of a desire for privacy that go far beyond duties that the typical wife must do. Many other wounded warrior caregivers understand the time and work that goes into this, but people outside of that community have no clue. Even other family members have no clue. I do not talk about most of it, nor does my husband. I tell just enough to try to help other caregivers going through similar situations, but I leave out enough so I do not place a burden on those we love. To me, everything I do to take care of my husband is therapy in itself. I love doing for him, and I love finding solutions to his problems. When I feel so helpless in terms of his pain and struggles, it makes me feel good to succeed at finding a solutions to problems and helping make things a little easier for him. So none of it is a burden to me. I enjoy it. But for those who will classify either of us as lazy, try being a fly on the wall for one day. You have no clue what goes on in this household.

Now on to my husband....
A day in the life for him, even without severe pain, is much different than the average person. Going to school full-time for him is far more demanding than the average person's full-time job. Imagine the cloudiness and confusion in your head when you have had to take strong prescription pain pills. Now multiply that, and throw in traumatic brain injury. At 41-years-old and with all that going on, try going back to college full-time for a degree in a computer related field. He does it, and saying his hard work amazes me is an understatement. This man spends far more time on his schoolwork than most people spend on a full-time job. He does not have the liberty of going into a shiftwork position for three 12-hour shifts a week. He works throughout the day almost every day of the week. When we have my stepson, he gets up early to work on it, stays up a few hours late, and squeezes some in the middle when he can. Even on those days he works about 5 or 6 hours on it. Days without my stepson can be 8 to 14 hours of schoolwork. No, he does not have a "job." But to anyone who says he does not work, I say that he would take your 36 to 40 hour work week at a normal job ANYDAY over what he does.

I apologize for the rant. When people speak ill of me, it does not hurt me. In fact, it only motivates me to work even harder to make complete fools of them for saying those things. But when I see what my husband deals with on a daily basis, and then someone tries to put him down, I must stand up and speak. I must set the record straight. I love that man with all my heart. But much of the love I have developed for him over the past year has come from the way I have gotten to know him. He does not speak of his struggles, and until he and I got married and I started working primarily from home, he had experienced those struggles completely alone. He does not share most of them with others, and he never even shared many of them with me. It took me living with him all day every day to learn of them. Even when we were married and I worked outside the home, I had no clue what he dealt with on a daily basis. Learning this, seeing it first hand, and then seeing how selflessly he pushes through it with everything he has inside of him, has made me develop a respect for him unlike any other. Going into work every day at a regular job is a dream of his that will probably never have the opportunity to come true again. Work... your shiftwork... your days off to spend as you please... your clockwork routine.... would be a much welcomed privilege for him, and for me. So... lazy? Far from it!

Friday, July 1, 2011

A Forever Soldier

A true soldier at heart, my husband is struggling lately with knowing that he can never again be in the military. We just passed the 1 year anniversary of his retirement, and it is finally hitting him. He wants so much to be active duty in the Army, stationed from base to base, experiencing the world. Other than the fact that he would have to leave Connor and I, he wishes he could serve again in Iraq. I don't know if this is a withdrawal phase he is experiencing, or if he is finally realizing the extent of his injuries and that things will never be the same again.

It has been nearly 5 years since his crash. The first year-and-a-half he spent in and out of the hospital, unable to work. Eventually he went back to work only at the desk until November 2009. Because he was unable to work a full 40 hours each week, and sometimes he could only make it in one or two days a week, he was transferred to the Warrior Transition Unit at Ft. Sill, Oklahoma, to outprocess for his disability retirement. In June of 2010, he was officially retired. Yet all that time he was still a "part" of the military. Now he has lost that. He doesn't get calls from his military buddies as often because their lives are different without him around. He recently found out that he would probably be in Iraq right now if he was still able, performing duties that he would love to perform.

He works on a new degree from home, and upon completion he will be able to perform some contract work from home. But staying in the house almost every day adds to the desire to be back in his old routine. I'm open for suggestions on a way to get him some regular out-of-the-house time. I hope that will make it easier for him. The best I can do right now since he cannot depend on his body to maintain any type of schedule is developing a nice outdoor area on our property. He and I were planning to create an area, but he physically has not been able to help much. So I'm doing the best I can to fix it up for him, and hopefully making a nice outdoor retreat will give him a way to get out of the confines of these walls.