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.