Messages to Family Members and Caregivers

Be kind. You don't know what somebody else is going through, especially when it's something that you can't see. If somebody has got a broken leg or a big laceration, you can see that. You know that they're hurting because you can see the blood or the bone sticking out or the cast or whatever. So, a lot of the things that we deal with, with the autoimmune things is the fatigue, the pain, mental even. PTSD for people. You can't see that, and I think that makes it harder for people to realize what somebody else might be going through. So, be kind because you just don't know what that other person is really dealing with. Be kind. Be supportive. Be there for them. Listen when they need to talk. Don't try to fix everything, but just listen.

Well I know that’s difficult. I was just talking to a wife of another Gulf War Vet that is struggling, and she says, it’s really difficult. And just try to be patient, and understanding, and especially with these medications. I didn’t really realize how bad these medications can affect a person’s mental state. And, it’s important for family members to monitor that. And so, I know my husband is very involved now, in my medication because of, the whole gabapentin thing. Because I just wasn’t my normal self, and I think that’s important. And they need to maybe get on some of these Gulf War sites, where you have Gulf War Veterans, because a lot of times they’ll allow the family members. And, they can see that, what the other Veterans are going through, and it’s not just their loved one, there’s a bunch of us that are having all kinds of issues. So, I think that’s the main thing, I would say, is just try to be supportive, and try to get involved in their care, and try to understand what it is. because I think that’s important, because it is so complicated. I mean our war wasn’t so much casualties on the battlefield, it’s post-war casualties, and illness, and all the things that come with it. So, I think it’s important for them to understand that.

There was a lot of things that were going on with me, and I didn't want to say anything about it. Right? I just didn't want to say anything about it. One, maybe it was because maybe I didn't want to believe that something was going on. But for the people that are there with the Veteran, keep an eye on them and watch them. They're the ones that will notice the change and the difference of their behaviors and things like the walking into, you know. You might think you just tripped over your own feet but tripping over your own feet might be something a little bit more than just tripping over your own feet. You know? There's a lot of times where Angela will be like, what's up with this? I’m like, I don't know. And then I realize what I’m doing, and I’m like, that's kind of odd. I didn't realize I was doing something like that. But the message would be watch them. Just watch them because you never know what's going to happen because of a wide variety of things that are going on. And I’m like, no. Everything is fine with me because maybe I didn't want anything to be wrong with me. But that's what I would say.

You know, we’ve been told to keep going. Keep trying. That no matter how hard they knock you down, get back up. That’s about it. You know, but we’ve been told that and it’s been drilled into our heads so much that that’s a common—it’s going to happen. You know, we are getting older, so yeah. If they ask, come in and tell them. If the VA asks. That’s about it. It's not him or hers fault. You know? It’s not him or hers fault.

You know, to be patient with them. We don’t mean to be crazy, we don’t mean to. You know, but there’s things going on inside our heads that are, that’s pretty crazy. And, you know who do you take that out on, but the people that you’re closest to. My wife has finally just decided not to hear anything I’ve said, really. It just is like, okay honey. I have nobody to fight with, she won’t fight with me anymore, 'cuz it’s really nice to just take that fight outside of your head, and give it to somebody else. And, you know, when somebody finally stops taking it, then you have to deal with it yourself, so. You know at the same time as being patient, don’t take it anymore. Don’t take their guff. You can be lovingly tough. And really, that’s what a lot of Veterans need, I think, I mean that’s what I needed.

Just for them to know that it is real. And, you know, that you’re always going to have people that’s going to take advantage of it. And to this whole process when doctors kept telling me, you know, well how do we believe this, or that, or this, or this, or that? And that’s a hard one, that’s a big one. You know, but you know if you’ve been around, family members have been around their loved ones and they know who they were before they went over, and they seen the changes, so this stuff is real. And it is to show love, to show care, that you care about people. Because it’s the worst feeling to be cast out all by yourself. And there’s so many people now, I know Vets that are on their own, that have gone through divorce, that they’re struggling with this stuff themselves. And it’s hard. The hardest thing I’ve ever done is gone through a divorce. That is the worst thing ever to be ripped out of your partner’s arms and be thrown away like a piece of garbage. When you didn’t want any of it. And there’s nothing you could do to change it. But you just have to deal with it. That is the most hardest thing I had gone through. To lose my family, pretty much. To let go of all the things that I thought were good and loving. But that is just live by the heart, to love by, love by your heart. Because it’s people that are hurting, they need love.

Well in my situation, you know for me, number one is patience. You know if there’s something triggering me, I don’t need my family members to start triggering me also, you know? Because I’m having a reaction to something I don’t need my family member to start yelling at me, or you know telling me how I should behave, or how I shouldn’t behave, or what I should say, or what I shouldn’t say, you know? Kind of in that aspect it’s kind of easier just not even to have any contact, you know? Because, I mean you’re constantly triggered if you have that person who’s constantly judging or telling you what you should and shouldn’t do. So, in my situation that’s why I’m glad that she’s leaving because I need to focus on me, but just patience. I mean because we all get triggered from different things and I might just be triggered from somebody saying, you know how is your day? You know? I don’t want to talk about my day, you know my day’s pretty shitty, so I don’t want to talk about it. And then she gets mad at me because then she, you’re being rude you know that’s not nice and you need to be nice and. But it’s a trigger, you know? So then it just sets off everything and then I get angry, you know. Because things aren’t going, it’s just a whole slew of different emotions and… to understand that there was trauma and there are things that are going to trigger, and if the Veteran says I’m being triggered right now, that the family members understand, okay. And they give the Veteran some space and let them go through the motions. Not just keep amping it up, and amping it up, and amping it up, because I’ve been in both situations where I’ve been triggered and I’ve been alone and I can deal with it. And then I’ve been in situations where I’ve been trigged and then I get triggered from a family member and then the family member keeps going and going and going and going. So it’s not a good situation, so. Patience, yeah I think being patient and just understanding, you know that there is a medical condition there and just, oh whatever.

I didn't talk to my cousin for two years because I was so upset with the way she treated me. We're friends again now, but it leads you to doubt yourself, and I think it contributed to the depression too, because you think that there's something wrong, but then you think, well, nobody thinks that there's anything wrong, so it must be me, so I just don't know how to get out of this spiral. And I’m still hurting and I’m still in pain and I still can't sleep. Did I do this to myself? It's kind of, it's hard when you don't have somebody to say okay, yeah, there is something wrong with you, and let's see what we can do to figure it out.

I would think that you’ve gotta find a support group, somebody to talk, you know, it helps me when I go to [town redacted] and talk to a therapist. But ya also find your loved ones to let 'em talk to. I mean patience. You gotta have patience. My wife is the most patient person in the world. You know, I put her through hell. I’m not complaining. I know I do, but you gotta have patience. I know it’s hard, but you gotta have patience. You gotta let them know that you’re there for 'em regardless what goes on. Patience is what is needed. You need somebody to talk to and have patience and be understanding and listen to 'em. Because most people will tell you what’s wrong with 'em if you listen to 'em.