A Note from a Caregiver

My husband served through two tours in Iraq as an infantryman in the Army. During his second deployment, his vehicle hit IEDs multiple times. His injuries never seemed to be severe, concussions and bruises, yet when he came home he was a different man–so different that it feels like the man I married died over there, but yet I couldn’t even grieve because his body, alive and breathing, was right in front of me. Every day I saw my husband’s face, but yet he was nowhere to be found. Eventually he was diagnosed with traumatic brain injury (TBI), severe PTSD and depression. He also had spinal surgery a year ago to take out the discs that were ruined from the blasts and the excessive wear. Unfortunately the outcome was poor. These days I have to watch for booby trapped doors at night because he is paranoid. He can’t go to our daughter’s school functions or even the grocery store. Crowds overwhelm him and open spaces have him scanning constantly for snipers. He stays in bed for days, and when he isn’t in bed, my daughter and I find ourselves walking on eggshells because we never know what will set him off. I have to handle all of our finances as well as appointments because he is no longer capable. I also have to make sure I go to all of his appointments with him because he finds it hard to process information and put his thoughts into words. Every now and then I get some glimpses of the “old guy” I knew, but it never lasts long before I have to say “goodbye” to him, yet again, and the “new guy” comes back.

When I heard through Family of a Vet, which is an online PTSD and TBI advocacy group, about the Caregiver program I almost didn’t apply. I’ve been so used to not being taken seriously by people, friends and family included, about my husband’s condition. Despite all of the issues I mentioned above, if you were to meet him you would never guess what we go through behind closed doors. Nearly all of his injuries are invisible- but invisible injuries leave scars. . .unfortunately you can only feel the scars, not see them. I figured that it would be easy to be eligible for the Caregiver program if he were an amputee or wheelchair bound, but I thought they would surely take one look at my husband and wonder why in the world we were applying. At worst, I figured they would tell us to take a hike, and at best, I figured I was going to have to fight for it.

I cannot tell you how wrong I was. This was the most painless process I have ever gone through that has been associated with my husband’s military career or medical care. I applied through a state appointed veterans counselor. Once the application was in I steadied myself for a long wait, after all we are in month 18 of waiting for the VA Comp and Pen board to review his case so I figured it would be a similar wait. Again, I was wrong. Three days later I received a phone call from a social worker at the Stratton VA Medical Center. She asked me questions about my husband, what I have to do for him, what the challenges are, etc. At first, it was questions about physical things and I thought “oh boy..here we go,” but from there it moved on to issues of TBI and PTSD. The most challenging question was when I was asked what I really do to assist my husband. It was challenging because I have been doing this for so long that I don’t know anymore- I just do what needs to be done to get through the day. I was honest and told her that, and she was wonderful and helped me break down exactly what I did for my husband by asking me other questions. The phone interview was actually enjoyable because I felt understood. She was empathetic and actually thanked me for standing by my husband-that recognition was amazing! There are some days when I don’t think I can hang on for one more second and to have someone recognize this made me feel very good.

A couple of days later, I received another phone call from the Caregiver Support Coordinator, Marianne Hunter, to clarify a couple of things on the application. Again this was another great phone call. Marianne is absolutely amazing- she made me feel very comfortable, supported and through her I have someone on my side, someone to turn to.

About a week after that phone call, I got my Caregiver Training Book and DVD in the mail. I have a feeling I would have gotten it faster, but it wasn’t even finished being made yet! That night I sat down while my husband was in bed and spent three hours reading every single word of that book, cover to cover, and then I took the test that came with it. The next morning I emailed my test in to Easter Seals. Two days after that I got a confirmation email that they had received it, and I believe just a few days after that, I got a call from the home nurse to schedule my home visit. I was very nervous about the home visit. I was so nervous that they would come and take one look at my husband and determine that there was nothing wrong with him. I was afraid that they might judge me or my home or scold me for the way I was handling things.

When the nurses came the first thing they did was to tell me that this visit was not to assess my husband’s condition, that had already been done. Their job was to listen to us and try to help us, help us to keep my husband safe and to make my job a little bit easier. They sat in the living room with me and my husband and one even cuddled our little kitten. Immediately they felt like allies. They asked a lot of the same questions that were asked in the first phone call of the application process and my husband was able to chime in too which was nice. Afterward the nurses walked around my home with me and as I showed them areas of difficulty for my husband such as the stairs (he falls a lot) they took notes with suggestions of things that could be ordered to help him. The visit took thirty minutes at the most and again was enjoyable. I had more support and I felt so validated, finally, people believe me, they saw our struggles, they didn’t try to downplay anything, I didn’t have to fight for help, I didn’t have to plead my case, I didn’t have to defend my husband’s condition or actions. Finally I wasn’t alone anymore, finally I have a support system. As I type this I am tearing up, it has been so long, so very long that I’ve been dealing with it on my own and to have people on your side, especially people on your side that can do more than just listen, but actually help you with your situation-that is a beautiful thing.

Being a part of this first time program is a huge blessing to me, the stipend will allow us a much better quality of life. We are now able to afford payments on a much more reliable car, previously we would frequently miss my husband’s doctor’s appointments because our car would break down and we had no other transportation. It allows us to send our daughter to summer camp or activities with other children, which gives her a great and much needed break from her stressful home environment. All in all having the stipend allows us to build a savings, pay off debts and just feel a little more at ease in our situation. Having one less thing to worry about definitely eases my burden.

I want to say thank you so much to everyone who helped in my process and a huge special thanks to Marianne Hunter who wasn’t just a passing figure in helping me through this process, but is now a part of my life. When I am having a hard day I can send her an email, when I have questions she is right there and she also comes to me with questions because she recognizes that I live this every single day and that means a lot to me.

Thank you to everyone who has a part in the Caregiver Program at the Albany VA Medical Center. This has been an absolutely painless experience- from the day I applied to the day I was done, the process was only three weeks. Thank you for recognizing what I and other spouses are going through.

Jennifer Conlon is the wife and caregiver of an Iraq Veteran.

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37 Comments to “A Note from a Caregiver”

  1. Ann Lang says:

    It is nice to hear that the Post 9/11 caregivers are getting so much help but what about us pre 9/11 caregivers? We get none of the benefits and all the same work with husbands with organic brain syndrome (which accourding to my husband’s mental health doctor is the same as TBI). When will we be offered or given the same benefits? My sons and I went through the same problems and I still am but because I am with a pre 9/11 veteran I do not get the same options.

    • Dan says:

      I too am happy that Jennifer is receiving the help and in an expeditious manner. It is rare, but sometimes the VA does the right thing for the veteran.

      This would be a complete win, were it not for all the pre-9/11 caregivers that still struggle every day, often for decades, attending to the needs of husbands, sons, brothers, fathers and grandfathers.

      The VA is still treating the pre-9/11 veteran with the unspoken policy of delay, deny and just wait for them to die. I know this was the way Congress enacted the law…the exclusion of older veterans was a deliberate political message.

      • Louise says:

        Yes, it appears that the politicians wanted to look good on this one in the public eye but plainly slapped the caretakers of the older veterans in the face. The forgotten caretakers, like myself still struggle. My Father had a traumatic brain injury with a seizure disorder and needs help 24/7. The VA does give him a home health aide “4 hours a week”. Due to the strain of paralyses on one side of his body it wore his joints and cause a severe arthritic condition to other side so I had to give up my career to aid him for about 10 years ago with no means of financial help or other family members to help out. We’ve had to purchase a special vehicle for his power chair with no assistance and he still cannot get around his home as he should and they have installed a lift on the front of the house but he still can’t get through his bedroom or bathroom with the power chair and needs assistance. Last year he had another fall and I rushed him to VA Detroit emergency in which they stated that his leg was broken. The doctor put a walking cast on it. He stubbornly tried to make it into the bathroom in the middle of the night and fell and hit his head. I had him rushed by ambulance to our local hospital only to find out THE DETROIT VA HOSPITAL SAID HIS LEG WAS BROKEN BUT IT WAS NOT. The VA does not want to admit that the strain on his other extremities has caused this arthritis and other issues and we are still waiting to hear on his appeals since 2010. He is currently rated 80% and 20% unemployablity. They feel that their best answer to me is that they have a “nice home” in Grand Rapids they could put him… “OVER MY DEAD BODY”; I can’t trust that he would get the proper care since they misdiagnosed a fracture and previously prescribed meds he shouldn’t be taking with his seizure disorder which again, landed him in the hospital.

    • Lisa Pearson says:

      I too am the wife of a pre 9-11 Disabled Veteran, and I think all spouses should be able to get the caregiver benefits!!!

  2. Char says:

    I learned about the caregiver benefits for post 9/11 vets reading while visiting the VA medical center with him. I too am happy that the post 9/11 vets are getting these benefits.

    I am the 74 yr. old mother of a Desert Storm veteran whose wife divorced him
    due to his mental health issues. At that time his children were 3 yrs. and 10 yrs. They are now 17 and 25. So you can see this has been ongoing for many years. In order for them to visit him it sometimes involved my having to get up at 5 a.m. in order to drive them at 6 a.m. to the town where their schools were. It involved dropping the older one and taking the younger one to a restaurant or somewhere we could read until it was time for her school day to begin. During this time period my husband and I fed, and bought many of their clothes. We are still required to make sure he has the proper diet, because he now has diabetes probably caused by the medications that he is required to take for his illness. For the entire time I have handled his finances, did his laundry and we have both had to endure his mood changes. I also attend his medical appointments with him. This has been a stressful and financial burden to us and we are approaching the age where our years may be limited to do this. I feel that caregiver help should be available to all vets who require it.

  3. Tonya says:

    Reading your story brought tears to my eyes. I met my husband while he was serving a tour in Iraq, after he came home we began dating and married. We have been married for 2 years now. When you talk about the paranoia, walking an eggshells because you never know what will set him off, it really hit home because we go through the same thing everyday. He does not do well in crowds and is always looking out for snipers, never turns his back to an open window and if we do go out he has to sit where he can scan the entire room at all times. He did recieve comp to begin with but it was based on an evaluation done while he was in Iraq and since then things have gotten so much worse that we reapplied and have been waiting 8 months now for a decision. He only has a 40% disability but in reality he is 100% disability. Both of his ankles are completely destroyed, his knees, he has 2 disk in his back that give him trouble. He is a Truck driver in the military, was hit by multiple IED’s. I do everything, if it was not for me his medicine would never get taken, ordered, I care for him and my daughter. We keep a wheelchair here because there are days that he can not even walk. He wears 2 ankle bracelets and knee braces, on a daily bases he will take 5-6 hot baths simple to try and ease some of the pain.

    It is so fustrating and I feel so helpless. There are days I wonder if I can keep doing it but all I have to do is look at him and I do see the man I feel in love with in his eyes even if his actions have changed. He is there and I know that I can not walk away from him, he is the other half of me and I will be here with him through every single up and down, no matter how bad the roller coaster ride is.

    Thanks for you story, it truely has helped me feel not so alone.

    • Jenny Conlon says:

      Tonya,

      I’m so glad that my post could help you. My turning point was when I found Family of a Vet and found myself “surrounded” by many people going through the same thing and then shortly after came the Caregiver Program. Finding some sort of support system with people who are going through the same thing is key.

      Jenny

      • Kateri Peterson says:

        Tonya, come to the website, and surround yourself with women who know what you are dealing with. You are NOT alone in, reach out! As Jenny said, my saving grace as well was finding familyofavet.com in one of many many midnight google searches looking for something, ANYTHING, to validate how I was feeling. My husband has been out of the service since 2006, so its been about that long since I’ve been doing this alone. About a month ago, I found them. FINALLY! It took that long to find them, but I Did and am given the drive and passion again for life! Hope to see you there

  4. I am a Iraq vet also. I really didnt know that I changed that much. I was so happy to be home. To make a long story short this change in my life has resulted in me being divorced. Also my close family has grew more and more distant. I feel helpless. I have never seeked help because I dont know what is really wrong with me. I performed route clearance missions and dealt with IED’s constantly taking a direct hit once. Any suggestions?

    Thanks

    • Billy Givens says:

      go to the VA and file for comp.and take ptsd tests

    • DOUG MUNSON says:

      CALL 1 800 827 1000 AND GET REGISTERED 1ST IT WORLS I NEVER THOUGH I COULD GET AND OER WANTED HELP I FOUND MOST PEOPLE WANTED TO HELP FEW EXCEPTIONS IN pORTLAND OREGON va. eMAIL ME BACK AND i WILL SEND OYU MY PHONE NUMBER ! i AM 80 DISABLED NAM VET 66-67 PTSD AND ISCHEMIC HEART VALES I WILL HELP YOU BROTHER! THANKS ONE HELL OF ALLOT THERE NO WORDS TO EXPRESS WHAT YOU HAVE DOEN FOR YOUR COUNTRY! I ALSO GET COMPENSATION AT 80% THATS ABPUT 2500 BUCKS NICE HUH! DOUG

    • DOUG MUNSON says:

      ALSO DERRIC DOUG GET SOME MEDS FROM YOUR DOC AT THE VA IT MIGHT HELP YOU DECIDE ITS YOUR LIFE AND OTHERS HUGSSSSSS! DOUG

      • Jenny Conlon says:

        Derek,

        I can’t urge you enough to get help. First thing tomorrow, before you do anything else- call for an appointment or go to a walk in clinic. I can’t say that everything will get better, as you read in my blog post my husband and I definitely still live with PTSD on a constant basis but I can’t imagine where we would be if he wasn’t treated, I’m not sure he would even be alive. Definitely build up a support group, take Doug up on his offer and talk to someone who has been there too.

        Jenny

    • Derek, make sure you see Crystal Woodard’s comment below.

    • Lisa Pearson says:

      You need to contact an organization called “Alpha”. They are disabled Veterans Advocates. They are Veterans helping Veterans, but they have had training for what they do. Our advocate was able to get us 100% in only 6 months!!! We just got it last month (June) after trying ourselves for 30 years. Alpha’s address, phone number and website follow…

      Alpha
      Veterans Disability Advocates
      19 Forest Parkway
      Shelton, CT 06484
      877-341-4754
      alphadisability.com

      They help Veterans from all US states. We live in Minnesota.
      Good Luck!!!

  5. Jennifer says:

    For those of you who are pre9/11 caregivers, there is help out there for some. Unfortuately it depends on the disability rating of the one you care for. I wish this was not the case, but at lease there is something rather than nothing. I am a full-time caregiver to my husband who is service connected 100% and have recieved a lot of help through the VA. I pray they change things for caregivers in the future so that ALL CAREGIVERS are treated equally. I do have to THANK the VA though. Without them I would not have been taken seriously at all. They are my second family.

  6. Desert Storm Wife says:

    I am the wife of a desert storm Veteran. He suffers from many ailments but will not be evaluated for increased compensation due to frustration with the system. He currently takes medication, but if he misses his meds he is a different person. He experienced atrocities that he choses not to remember. He does not require a full time caregiver at this point, but if he weren’t taking his meds it would be a different story. He is a different person, irritable, quick tempered, avoids crowds, won’t go in public. We “walk on eggshells” as some of the others have described. He refuses to admit that he has been affected by the things he saw and has PTSD. I recall prior to taking the medication, he was dreaming and he was actually choking me in a headlock. When he started leaving the house to walk in the dark and had no explanation as to why, he sought help. Help is too difficult to access.

    • DOUG MUNSON says:

      DONOT GIVE UP KEEP FILING IT JOGS THERE MEMORY I GET 2500 PER MOMTH FOR MY SICKNESS IF I WOULD NO HAVE APPPEADED IT I WOULDN’T HAVE ANY EXTRA WHICH WE HAD TO FILE BANKRUPTY CAUSE I COULDN’T WORK ANYNORE FIANLY AT 57 I GAVE UP STOPPED QUITTING JOBS DUE TO ANGE ISSUES VIETNAM. SO PLEASE HELP YOURSELF IT WILL ALSO HELP YOUR HUSBANDS SELF WORTH HE WILL BE CONTRIBUTING TO THE FAMILY, SO AOOEAL IT APPEAL IT APPEAL IT. THEY GENERALLY WON’T GIVE YOU 100% RIGHT OFF SO KEEP FILING THE SYSTEMS IS FUKED! BUT KEEP NEVER EVER SURRENDER AN OLE ARMY PROVERB!

  7. Jennifer,
    Thank you for your comments and encouragement to others to seek assistance through VA. We are working hard to meet the needs of all of our family caregivers – we do recognize the many sacrifices that you make each and every day and how very challenging this can be. As you support the Veterans you care for, we want to support you. I would encourage you (and others) who have not connected with your local Caregiver Support Coordinator (there is one at each VA Medical Center), to do so. You can find out who that is by calling our Caregiver Support Line at 1-855-260-3274 or checking our Caregiver Website: http://www.caregiver.va.gov. Let us know how we can help.

    • Trina says:

      Deborah,

      I have tried to contact my Coordinator at the VA but she seems to have a hard time calling people back. I am wanting to know how much longer does it take to start getting paid after the nurse does the home visit? I applied back in July 2011 and it is already August 25, 2011.

  8. Mr. Kingston,
    My name is Crystal Woodard and I am a Returning Combat Veteran Program Manager that works for the VA Healthcare system. I want to provide you with some vital educational information on the VA Healthcare system’s programs that specifically assist returning combat Veterans and their families especially in regards to adjustment issues following deployment and any other ongoing issues that you are dealing with at this time. Many Veterans have some of the same issues you have described in your blog.
    The Returning Combat Veteran’s Program is available at all VA Medical Centers. The Program will initially assist you with getting enrolled at your local VA for healthcare services. As a returning combat Veteran you are entitled to healthcare services as they relate to your deployment to Iraq. These services include but are not limited to a complete evaluation by the Returning Combat Care Management Team, Mental Health Services, if indicated, Primary Care Services (an opportunity to see a Medical Physician regarding any medical issues you might have as a result your deployment), and any specialty referrals, evaluations and assessments. You mentioned being in an “IED blast.” With this occurring you should probably have a screen completed for “Traumatic Brain Injury” to rule out any sort of trauma that could have occurred from the blast.
    I would encourage you to contact me so that I can link you with these services. I can also contact your local VA to ensure that appropriate follow up is initiated and completed so that you can be evaluated and screened for all of these services. If you are agreeable with this, please contact me at 202-461-7063.
    Thank you,
    Crystal Woodard, LCSW, BCD
    Returning Combat Veteran Program Manager
    202-461-7063

  9. Susan Sobieray,LPN says:

    Dearest Veterans,
    These postings bring tears to my eyes and pain in my heart that you are all hurting so very much after serving to keep me and my children & grandchildren safe and free. Thank you very much for your sacrifices.
    I come from a military family. I thank God for their safety and encourage them to seek to be in the VA Medical system. I’ve learned just because a person “looks” okay, doesn’t mean they are okay.
    People have to look past the cover of the book to see the needs. People have a natural social aspect of helping others and putting themselves on the back burner. It is time for you to be on the front burner.
    I encourage all Veterans to get into the VA medical system. Applying to be helped or volunteer to help others. You served, you deserve to be cared for. You may think or don’t quite know how you need help but, one day you will realize by helping others you can help yourself too. The light may come on and you find, you did need help after all. It is okay to need help from other people.
    God Bless America! God Bless all the Jenny’s and Derek’s. I will keep you in my prayers to make that step in signing up for care. That is what all the VAMC’s are here for. Come see us now, don’t wait, Come to the VA to get the medical care you have already paid for. Thank you again and again! I can not tell you enough, how much I appreciate your service. Take care of you. You are your own best caregiver, make that call. The services are here for the asking.

  10. Greg says:

    Your husband may be eligible for, if only short term, the Home Based Primary Care program as well. something else to look into.

  11. I am SO thankful to Jenny for her courage in writing this blog post and in helping get the word out about the new Caregiver Program. I know her personally, and she is one awesome lady :)

    We are running into so many veterans and caregivers everyday who still aren’t aware of the program. We’re going to have to all do our part to make sure that those who need it are aware that it exists.

    For those of you who are caring for Veterans who served before 9/11, first let me say thank you for taking care of our nation’s heroes. As the caregiver of a 100% disabled Veteran (post 9/11) I know your day-to-day struggles. From what I understand, there are plans in place over the next few years to review this program and possibly extend it to caregivers of other heroes. I know that’s not much comfort now, but maybe it offers some hope for the future.

    Thanks,
    Brannan Vines
    Proud wife of an OIF Veteran
    Founder of FamilyOfaVet.com – an organization dedicated to helping heroes and their loved ones survive and thrive after combat!

  12. Kateri Peterson says:

    Jen, Thank you for sharing! I was tearing up reading your story, and I found myself nodding my head a LOT! I havent sent in our application either because it feels threatening to think they will come to our home and perhaps judge me for how I am handling things. What if I’m doing it all wrong? familyofavet.com has a been a tremendous Godsend to me, as I have often been and often am feeling lost and alone with this. Familyofavet.com is where I found out about the caregiver program at the VA, and because of this post, you have given me the courage to send our application in. Thank you Jen for being open and honest and strong for your Vet!

  13. Stephanie says:

    Wow, Jenny, you are more awesome every day!! :)

    I’ve been working with Jenny for a while at FamilyOfaVet.com and I can honestly say she is one of those people who just make you smile. Every time she emails me I just feel happy. I know she is a fabulous caregiver for her husband because she is just a great person!

    My husband and separated and divorced a few years ago because we just didn’t know what else to do. He is an OIF veteran struggling with PTSD, TBI and minor physical wounds, as well. We both grew up with fathers who were Vietnam veterans so our “triggers” were already established even before we met. Needless to say, when he came back from Iraq in 2003, life was incredibly difficult. After struggling with his PTSD for many years and not knowing what was wrong, I finally ran into FamilyOfaVet.com in 2008. Like many others, I found this amazing resource by searching Google shamelessly for something–anything–that would validate how I was feeling and how my husband was acting. Today, my former husband and I are closer than we ever where when we were married. We talk about his PTSD, his VA appointments and he confides in me when he’s having a hard time with something. He even follows FamilyOfaVet on Facebook and Twitter because all the information helps him sort out his feelings, too!

    Please, if you need folks who understand, join us at FamilyOfaVet.com! We always love to hear your stories and help! :)

    • Kateri Peterson says:

      This makes me laugh….or cry? How many other women are out there like we were in the middle of the night crashing our google toolbars trying to find something!?!!

  14. Jason says:

    Wow, good for you! I’m glad it was so easy for you to get. I was told that even though my mental heath provider told my wife/caregiver and myself that I need to be watched 24/7 due to my PTSD, Anxiety disorder, depression, suicidal tendencies and bi polar disorder and that my primary doctor has me taking 45mg of morphine 3x a day, has me on other meds I don’t really want to disclose, need to use a cane to walk and am rated 100%, that I don’t qualify because I’m not wheel chair bound. I find it funny that both my doctors tell me to my face and tell my caregiver over the phone that I need a caregiver, that I cant be left alone and I cant take care of myself but then they fill out the forms saying I’m fine. The same doctors that wrote letters to the VA to get me upgraded from 100% to P&T and sent police to my house twice because they were worried about me yet I’m fine and can live on my own no problem. Well since my caregiver received that letter she has drastically cut back on taking care of me and I am suffering greatly. I haven’t been bathed in days, she wont drive me to my appointments anymore, doesn’t want to cook for me. She says that if the VA feels I’m fine then I must be. I fear I’ll end up dying alone in my room and no one will notice. Every day I think about taking my life because its gotta be better then this. I know I can never live alone, I need help but I have no one to reach to. The VA doesn’t seem to care about me, hell I went to an appointment about 6 weeks ago and was treated like shit by the doctor, I told my primary care doctor about it and he told me not to report it cause if I do no VA doctor will help me.
    So yea I guess it just depends on which hospital you apply to, the one in Detroit sucks! I want to stay living at home but if I don’t have anyone to help me then I wont be able to and I don’t want to live in a hospital, I’d rather end it.

    • Caitlin Thompson PhD says:

      Jason,

      We are so concerned to hear about how you are doing. It sounds like you’ve had a very frustrating and difficult time. Please contact the Veterans Crisis Line so that we can help to support you through this. The phone number is 1-800-273-8255. Press “1″ for Veterans. You can also come in through our Veterans Chat Service at http://www.veteranscrisisline.net. We really want to hear from you.

      Best wishes,
      Caitlin Thompson, Ph.D.
      Clinical Care Coordinator
      Veterans Crisis Line/Veterans Chat

  15. SK says:

    I suffer with PTSD and TBI. I can’t actually believe all the people willing to put up with our BS. People related to someone with this should take a step back and make a decision about their own lives. Young women who “love” or have loving memories…your in for a roller coaster ride if your husband or boyfriend has PTSD. My suggestion is get out! It’s a horrible way to live. FOr those people in pretending mode for benefits well keep faking but what a crappy life choice. For grown men and women who have this we all need to be thinking about our selfishness in letting others carry this weight. I mean I am hearing above someone say they must be bathed, sure I would like to be bathed, sounds nice…but really? I am 100% and in every therapy I can get into after many years of destruction, man up and do all you can, then be honest and fair to those in your life. These poor women I keep reading of who are taking care of grown men who are obviously not manning up and doing all they can or letting them go…

    • Lisa Pearson says:

      I will always stand by my man, no matter what! I took my wedding vows very seriously, especially the parts “in sickness and in health” and “for better or for worse”. I made a vow in front of God, my man, relatives and friends, and I will stick to it until Hell freezes over!!!

  16. SCOTT JOHNSON says:

    Last month, my wife and I were denied access to the family caregiver program because the VA program director stated I did not qualify since I didn’t have a “seriuos injury”. I disagree and submitted an appeal.

    I am a 100% service connected post 9/11 US ARMY active duty veteran who was medically retired with over 22 years of service on 13 July 2010 with Amyotrophic Lateral Sclerosis (ALS) – better known as Lou Gehrig’s Disease. My activities of daily living are severely compromised, and I need supervision and assistance to safely perform basic functions every day. My condition will continue to deteriorate over the rest of my life. ALS has no known cause but DoD/VA studies link military service and service in Southwest Asia to ALS and suggests an environmental (toxins, immunizations, traumatic experience and/or physical activity) trigger. The evidence was so compelling that on September 23, 2008, the Department of Veterans Affairs implemented regulations to establish a presumption of service connection for ALS, and acknowledged the link between military service and increased risk of ALS.

    While there is no data on on-going operations in Iraq, the studies indicate Gulf War veterans began showing an increased occurrence of ALS between 4 and 10 years after redeployment. Due to the timing of my symptoms and diagnosis, the location and nature of my duties in Iraq during deployments in 2003-04 and 2007-08 (see Deployment Narrative below), the associated potential for exposure to toxins, exposure to traumatic physical and psychological events, and causation uncertainties, it should be reasonable to presume that exposure to an ALS trigger during Operation Iraqi Freedom deployments damaged or harmed the neuromuscular and/or neurological systems within my body.

    Webster defines injury as “damage or harm done to or suffered by a person or thing.” Medical definitions of injury vary. MedicineNet.com defines the term “injury” as damage inflicted upon oneself as in a hamstring injury or by an external agent on as in a cold injury. The injury may be accidental or deliberate.

    The legal definition according to legal reference websites of a “serious injury” is “a personal injury which results in death; dismemberment; significant disfigurement; a fracture; loss of a fetus; permanent loss of use of a body organ, member, function or system; permanent consequential limitation of use of a body organ or member; significant limitation of use of a body function or system.” The link between the personal harm/injury and the magnitude of the resulting outcome is more important than the initial damage. Neither force, energy nor trauma are mandatory components of an injury or serious injury.

    • Scott,
      I am an Army veteran and I work closely with the ALS Association of Florida and the VA as my company builds wheelchair accessible vans. I was curious about your posting regarding the caregiver program for veterans with ALS. Did I understand you correctly, you were told by the program director that you did not qualify? Had you already been given the diagnosis of ALS? We have veterans who have gotten modified vans shortly after they were diagnosed with ALS and they have been fast tracked through the system, it is surprising given the nature of the diagnosis. Any reply is appreciated as I help to unravel the red tape for my wounded brothers.

      Thank you,

      Scott Ramella

      • SCOTT JOHNSON says:

        The new Family Caregiver Program isn’t available to post-911 veterans with illnesses like ALS, MS, and other dibilitating conditions. The law states that post-911 veterans must have a “serious injury,” but doesn’t define the term. Serious injury according to is defined iin legaleze as a personal injury that RESULTS in death; dismemberment; significant disfigurement; a fracture; loss of a fetus; permanent loss of use of a body organ, member, function or system; permanent consequential limitation of use of a body organ or member; significant limitation of use of a body function or system. BY this definition the consequential limitation of use of my arms and legs due to damage to my neurological system that triggered the onset of ALS should meet the standard.

  17. Margee' says:

    I’m the wife/caregiver of my husband who is a Nam Vet with Brain Cancer. No help for us!

  18. Jessica McCarter says:

    My husband and I are OIF vets. My husband left the army in 2009 and in 2010 he was diagnosed with class IV congestive heart failure at 25 years old. He was not getting any blood flow to his organs or extremities, so our doctors implanted a Left Ventricular Assist Device and listed him for a heart transplant. His device requires 24/7 power to keep him alive. He has to wear battery packs and a computer during the day and at night I have to plug him into the wall. This will hopefully bridge the gap to tranplant. Anybody who is familiar with this device, knows what type of care my husband needs. I never thought I would become my husband’s caregiver at such a young age. Our heart transplant team believes my husband has toxic chemical exposure. Last week my husband was awarded 100% service connection and we are not elgible for the the post 911 caregiver support program because the law states that it must be an injury or mental trauma (illness) to qualify. I cannot work because my husband can’t be alone.
    Anybody have any idea who I can contact to work on getting this law amended.

    • Terri Dixon says:

      My husband was inplanted with an LVAD December of 2011, while he was in the hospital I worked as I could and was allowed to telework for a month after he came home. I have been back to work for a month now and although it’s been tough we are doing it. I plan to retire soon. He also was in class vi heart failure and has show much improvement. I am able to leave him alone and I even know of one person with this type of devise that lives alone. Where he was implanted they encourge them to be self sufficent but I don’t know about your situation. Keep the faith and hopfully this device will get him back to some normal activity.