Sarah Wade

Sarah’s Journey

Sarah Wade:  My name is Sarah Wade. My husband Ted was injured six years ago when he was serving in the Army over in Iraq. And I’ve been his caregiver for the last six years. 

Ted Wade:  She helps in keeping me pointed in the correct direction. And moving forward.

Sarah Wade:  He was on a patrol when his humvee, his convoy, but particularly his humvee was hit by an improvised explosive device. The bomb was detonated right underneath his vehicle. Ted was thrown from the vehicle. His right arm was completely severed above the elbow. He suffered a severe brain injury. And he had multiple other shrapnel injuries, soft tissue injuries and fractures. He was unconscious at the scene and remained in a coma for about two and a half months after that. I arrived in Germany about two days after Ted was injured. And at that point his condition had started to worsen. When we spoke to the neurosurgeons their prognosis was that he was not going to return to the United States alive. We were going to remain in Germany until he passed away essentially. One of the topics that was raised to his parents and I was the option to withdraw life support. Thankfully we never had to make that decision. When he did start to improve and became evident that he was going to survive it was, it was just such an incredible weight that was lifted off of me. But then as his coma persisted joy started to wear off and I became really afraid that that was going to be, that was going to be the rest of his life. He had survived but he wasn’t waking up. When Ted first came back to the United States he was transferred back after about two weeks in Germany. Which was an unusually long stay. We arrived at Andrews Air Force Base and Ted was moved to Walter Reed Army Medical Center. At that point really my role was oversight and monitoring care, being involved when the teams came through to be educated on all of the things that were going on so that I could make informed medical decisions with Ted’s family. I think for the first probably two, two and half months of him getting injured, there’s just a lot of sitting by and watching and feeling helpless. When Ted started to wake up there was no just waking and saying hi one day. It was, it was a long, gradual climb. When something would happen or when I would say something to Ted, it was always when I saw a look that was unique to him that was appropriate to what it was said that it gave me hope that he was in there. After he was released from Walter Reed he moved to a VA medical center in Richmond Virginia, which is where he originally was weaned off of the ventilator and first started to swallow again, and eat soft foods, and that sort of thing. One of the neatest moments that I can still picture in my head is ironically it was Good Friday and Ted’s speech therapist came to see him and she had put a cap on his trachea so he could speak. And that was the first day he talked. She had brought some ice cream, she gave him a bite, he ate it, he had a couple more and he looked at her and he said “more.” We should have fed him ice cream long before that. But, it was a good Friday. Once he got to a point where they were trying to get him up and walking again, that’s when I was able to become a little more involved in his rehabilitation. Which was a treat. Something as simple as just learning how to support him properly with a gait belt you know, so that he could get up and transfer out of his wheelchair and just walk the couple steps to his bed. I think a lot of things that we take for granted everyday, just being able to reach over and turn off the alarm clock, those sorts of things I really started to appreciate at that point. Just for Ted to be able to reach over and grab something out of my hand was a big deal. Care giving is such a broad term. Ted and I have been through quite a spectrum. He was first injured he was very dependent for every, every little thing in life. Now sometimes he can have difficulty with judgment, really needs someone there to keep him safe. He can no longer drive. He has difficulty preparing a meal. Care giving can be managing his medical care and his schedule because he has difficulty with organization.

Ted Wade:  Sarah is definitely my best advocate. 

Sarah Wade:  Because of the TBI sometimes I’m his memory. Ted can go to a doctor’s appointment and can’t come home and tell me everything that transpired so I need to go with him to remember what happened for him.

Ted Wade:  She continually works hard to keep me going.

Sarah Wade:  Not only is it important for Ted to have a very consistent routine, it helps with his memory issues. But it also helps me. Something as simple as his appointment schedule.

Ted Wade:  Sarah keeps my schedule, schedules, on time.

Sarah Wade:  I think that one of the most important roles that a caregiver can serve in working with a healthcare team is we’re really the eyes and ears that are around all the time. One of the best things that I’ve been able to do is make observations, keep notes about what I’ve observed, and, and take them in and talk to the doctors or therapists. And with that said, some of the best providers we’ve worked with are ones that will tell me what they want me to look for. You know, what it is that they need to see to get a good idea of what is going on with Ted. We’re changing medications, what side effects am I looking for? Or what are signs that it’s doing what you want it do so I can, I can give you feedback. Medication management is so important. My husband has a lot of memory issues and a lot of organizational issues. But also he doesn’t have a very good sense of time, how much time has passed. And so we’ve, we’ve come up with ways to compensate. Ted has alarms that go off twice a day in his cell phone that remind him to take his medication. Our dogs have also helped with that though. We have learned that if Ted takes his medication twice a day at the time that, at the time he usually feeds the dogs they don’t let him miss a dose. They come and wine to him when it’s time to eat and he knows it’s time to take his medication. But it’s really important for him to stay on a good schedule, take his medication on time cause’ we have noticed that if he misses a dose by a few hours or he misses a dose one day it can throw the rest of his week off. One of the things that’s been hardest for me as a caregiver is juggling too many balls at all times. That not only am I responsible for all the things that need to be done for myself but also for my husband. When Ted first got injured, I was afraid to let anybody else take over in any way. I had been on such an emotional roller coaster for several months and it was such a long time before he was stable. I was afraid that if I walked away he would die. But with that said, I also knew that I couldn’t go on like that forever. You can only run on adrenaline for so long before it runs out. I did have to come to the realization that if I didn’t start taking some time off, if I didn’t start pacing myself, that I wasn’t going to be able to stay in the game forever. Every now and again I would become of aware of the fact that I was feeling a little bit of resentment. And I think that really scared me. I in some ways had lost my own identity. And I had been Ted’s caregiver for so long that that was, that’s who I was. That’s what I did. And through taking some time off for myself that was really better for Ted. It requires a lot of patience to be able to help somebody with a brain injury. And through taking breaks and taking more time for myself, I was able to be more patient. I think after a while, when you’ve been a caregiver for so long, it’s hard to see yourself as a spouse. One of the things that taking some time away enabled me to do was save up my energy for the fun things. Just anything as simple as having enough energy to go to the gym with Ted. I mean that’s something that we use to do in the afternoon or evening after work or school and I got to a point where I was just too tired. And I think it was important for me to prioritize what other people could do with him and what I absolutely had to do and find that time to walk away so that I could see myself as a spouse again. And even though there’s things Ted can’t do anymore, I had to really figure out what he could do. I mean it’s very difficult for Ted to cook with one arm. Plus with his memory issues he tends to burn things. I’m better off; I’m better off handling those duties. But what he can do is wash dishes. So, just something as simple as finding responsibilities like washing the dishes enabled us to establish a give and take again. I’ve had to really focus on what, what’s, what we still really love to do and make an effort to do those things together. I think that sometimes life can be so busy and so difficult that we don’t find the time to enjoy each other’s company. And I think without making time to enjoy one another and appreciate time together that you know, our relationship would probably fizzle. I think we probably would have forgotten by now you know, what we did love about each other. You do think of marriage as a till death do us part. But not, when you’re in your twenties you just don’t, don’t think of what life would be caring for somebody in their twenties. When you get married you think that that’s going to come so much later. That that’s going to you know, that will happen in our seventies, in our eighties, not in our twenties. It’s just, it’s incomprehensible. But one of the things I think that always kept me in perspective is I know if this had happened to me that you know, I would hope that Ted would do the same thing for me. I’ve always everyday tried to treat him like I would want to be treated if I were in his shoes. When Ted first got injured it was so hard to fathom that he could ever get better. But I think part of that was re, readjusting what my definition of better was. For a long time my idea of Ted getting better was getting back to where he was before he was injured. And I think the longer that I thought that way, the more disservice I was doing myself. It just wasn’t realistic that he was ever going to recover to the point that he was before injury. We’ve now learned to live everyday, just judging his progress and our lives in a way that you know is today better than yesterday. It’s a major accomplishment that Ted can go to the gym and ride the bike five minutes longer than he could a few months before. It can be measurements that that simple. Six years post-injury, a lot of Ted’s deficits have cleared up and there ones that are still with us. He still gets fatigued very easily. When he was first injured, he had difficulty sleeping. He required medication to maintain a regular sleep cycle. Now we actually have the opposite problem. Ted could sleep for as long as you let him. And why that’s problematic is that if he sleeps too much he gets really groggy. And it really, it’s very noticeable in terms of his cognition. Ted still gets agitated easily but not nearly as bad as he used to. He’s a little better at self-control. And mastering that frustration and working through it. I also use to think that his stubbornness was one of his worst characteristics but now it actually turned out to be one of his, his best because you tell him he can’t do something and he’ll find a way to do it. Returning to work after a brain injury can be a big challenge. I think people think of employment in too strict of terms. We need a purpose; we need something to do everyday. And so, you know I don’t know if Ted will ever be conventionally employable in that strict sense but one of the things that he has benefited from over the last couple of years is doing volunteer work. Ted met a really neat person in Chapel Hill, North Carolina where we use to live. She ran the Botanical Gardens at the University of North Carolina and she had a horticulture therapy program there. And Ted volunteered at the North Carolina Botanical Gardens and loved it. Likes to be outdoors. He’s on of those strange people that actually likes to do yard work. So it was a lot of fun for him.

Ted Wade:  I would just help weeding and planting different things here and there.

Sarah Wade:  Having a volunteer job and having somebody else who depends on him. Someone who expects him to show up, someone who needs him to get his part of the equation done. 

Ted Wade:  It’s an accomplishment that I can look back at and still can contribute to.

Sarah Wade:  Having duties and contributing and feeling productive again has been really good for his self-esteem. Maybe about a year after Ted was injured he went back to Walter Reed Army Medical Center after having done inpatient rehabilitation at a VA hospital. And he went back to Walter Reed to the amputee clinic there. It was wintertime and there were other soldiers that were going on an adaptive ski trip. And snow skiing was something that Ted had loved before he got injured. And I really had hoped that that was something he could get back to doing. I really, I really hadn’t thought that it was realistic. And that became a goal for both of us. I decided to ask Ted’s neurologist and his rehabilitation doctor what it would take for him to be able to skiing again. There was some minimum requirements. One of them was they thought it was too soon post-injury for him to do that. They were concerned about him being in high altitude. They were concerned about him falling and injuring himself again. So now, six years post-injury we were able to go skiing. And this year was truly amazing. This is someone who wasn’t expected to live. He wasn’t expected to wake up. He wasn’t expected to walk. And he can snow ski again. And there were times when we were skiing that I found myself getting kind of sentimental and just thinking to myself wow, this isn’t suppose to be happening. There’s a lot of progress that I can’t see day-to-day. And neither can he. And when we go out and ski it just all comes together and the first time he tried to snow ski after he was injured, it was very hard for him to make turns and keep his ski’s parallel because one body, one side of his body was a lot stronger than the other. And so this year, watching him ski and watching him make really even turns it was just, my heart was fluttering. 

Ted Wade:  Looking good and I’m sounding much better and just keep going.

Sarah Wade:  One of the most important things that I have found for Ted participating in adaptive sports either using his adaptive cycle or snow skiing is that it gives him a year long goal. It gives him a reason to work hard, to stay in shape, to participate in therapy.

Ted Wade:  It inspires me to continue on.

Sarah Wade:  Ever since Ted was injured, my way of thinking has changed a lot. I use to have this future planned and specific goals, things I wanted to accomplish. I was always the person that looked at the big picture and now I find myself always taking life day-by-day. And six years ago I’d never imagined that I’d be where I am now and I really don’t know where I’ll be in six years. At this point you know, my goal is just to enjoy everyday cause’ I’m just thankful that I have each day I do with him cause’ there’s a time where no one thought that that was a possibility.

Ted Wade:  I wouldn’t be here if Sarah wasn’t there to keep me going on.