I was blessed with the opportunity to return to NYC for the second part of the Wounded Warrior Project's Caregivers Writing Workshop along with the Writer's Guild of America, East. The friendships I have made with some of the other caregivers are priceless. It is so nice to have others who understand your situation and can offer advice and tips on how they handled a similar situation. I will forever support Wounded Warrior Project. It is amazing what they have done to help us and other wounded warriors and their families.
Kiddo Update: I got my results on my tests, and I was informed that my progesterone levels were off the chart. In other words, things look good on my end. We are working on this month, and we will try next month, and then it will be time to turn to more intense testing and possibly IUI if it still has not taken.
We met with a new doctor, and we are SO pleased with him! He is wanting to admit Tim to the hospital for a couple of weeks to do intense occupational therapy as well as some other therapy. Although we don't want him to have to spend two weeks in the hospital, we are looking forward to this opportunity. There is a chance that what he learns can help decrease his daily pain level.
Yesterday was a big day for us. A nurse from the VA came out to do a home visit to evaluate our eligibility for officially classifying me as his caregiver. This has been a process, and the home visit was the part we were most concerned about. It turned out to be great! I cleaned for three and half days, so afraid that something would keep us from getting the grant. I had read a blog entry of a caregiver who scrubbed everything with a toothbrush and went a little OCD on her cleaning, but they didn't even look far beyond her living room. Yet I was still too nervous to not go all out on the cleaning. So I scrubbed and scrubbed and scrubbed. I had beef stew cooking in the crockpot so it would smell good in the house (a different good than my over-abundance of glade plug-ins that I keep around here). I washed the glasses on my wine rack just in case they had any dust on them. I scrubbed everything! I was definitely over-prepared. The lady was very nice, and the whole process went very smoothly. We hope to have an answer shortly after Thanksgiving. One source I read stated that I will be paid back pay to the date of application, and another said to the date that I finished my training, if I get the "job." Since I have technically been working this full-time "job" for over a year now without pay, it will be nice to actually get paid for it. I'm praying right now that it goes through.
Other things I am working on right now are a little exciting. I learned of "Guitars for Vets" when I was in New York this time. Tim has been wanting to learn to play the guitar. This program offers free guitar classes to disabled vets and gives them a guitar. When I mentioned it to him he was very excited. So I am looking into getting him involved in that program. I believe it will be a great outlet for him. Another thing that we are excited about is getting him a hand crank or terra trike. These are modified bicycles for the disabled. He misses regular physical activity, and he has expressed interest on several occasions of biking. He cannot sit in the upright position necessary for bike riding for a long period of time, though. The hand crank or terra trike will allow him to participate in running and biking races with me. We are currently considering doing a half marathon together in March... I will run along next to him on the hand crank or terra trike.
Showing posts with label caregiver. Show all posts
Showing posts with label caregiver. Show all posts
Saturday, November 19, 2011
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.
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.
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!
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!
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