In the wake of 9/11,
a generation of military caregivers
learns to adjust
to a new way of life
As their wedding anniversary draws near, Sarah and Saul are reaching yet another milestone in a life they never would have envisioned when they exchanged vows on their wedding day 10 years ago.Like many other military families before them, these Californians, who were high school students when they started dating, faced the uncertain separation that followed Saul’s decision to join the U.S. Army in February 2006. As Sarah now reflects on his military service, the first word that comes to her mind is “proud.”“I was proud of him for making a difference,” she said. “I wasn’t scared. Although he was joining the military at a tumultuous time in our country, we both knew what we were getting ourselves into. I’m not a worrier by nature, and I never actually worried. Even though I knew there was a possibility he could get hurt or that he could die, there was nothing I could do about it. I had to go about my daily life and pray that he would be OK.”Today, the couple’s “daily life” includes activities centered around their children: Ezekiel, 7, and Sephora, 5. But it also is shadowed by the memories and wounds of war that Saul experienced in 2007, after his deployment to Iraq. While in a convoy of Humvees, the vehicle Martinez was riding in as a gunner ran over an improvised explosive device (IED). Two of his friends died immediately in the blast that followed. Martinez lost both of his legs because of massive injuries. He also suffers from symptoms of Traumatic Brain Injury (TBI) and Post-Traumatic Stress Disorder (PTSD).Now, Sarah Martinez often encourages her husband — to help them all get on with life, as she puts it.“I never gave him the option of feeling sorry for himself,” said Martinez, who is a Caregiver Fellow for the Elizabeth Dole Foundation. “This is our life now. We’re not looking back at what life was like before, wondering, ‘What if it were different?’ That’s not going to help anyone.”
With 1.1 million Americans now serving as caregivers for post-9/11 servicemembers, according to reports by RAND Corp., services have increased to address the challenges faced by military caregivers who often care for spouses, children, siblings, or other relatives with physical injuries and “invisible injuries,” the term often used for TBI and PTSD.As several post-9/11 caregivers expressed, it sometimes can be difficult for others to relate to their challenges as caregivers because, in some cases, their loved ones’ injuries are not physically obvious. The caregivers could only detect that “something was different” when their loved ones returned home from military service. It wasn’t until later, and, in some of those cases, after repeated visits to medical officials, did they receive a diagnosis for PTSD, TBI, or other trauma-related illnesses.As part of this Auxiliary magazine feature highlighting caregivers of post-9/11 veterans, three women, all American Legion Auxiliary members, took the time to talk about their lives as military caregivers and the steps they’re taking to care for their loved ones, advocate for awareness, and get the help they need themselves.
Along with her responsibilities as a wife and mother of two, Sarah Martinez helps raise awareness about caregiving through her fellowship with the Dole Foundation, which focuses on strengthening the services afforded to military caregivers.In that role, Sarah frequently shares the events that led her to become a caregiver for a post-9/11 military veteran. In a telephone interview, she recounts the call she received to let her know that her husband, an Army infantryman, had just suffered massive injuries in a blast.“They stabilized him in Baghdad before he was sent to Landstuhl [Regional Medical Center in Germany],” she said. “They told me that it was such a traumatic event that they didn’t know if he was going to make it.”Even as Sarah prepared to fly to Germany, she was informed she wouldn’t likely make it in time. However, the medical team was able to stabilize Saul and sent him to Walter Reed Army Medical Center in Bethesda, Md., which is now the Walter Reed National Military Medical Center. That’s where Sarah first saw her husband after the blast.
Up until that point, Sarah said, everything seemed surreal. “When you’re not there, you can’t see what they were talking about,” she said. “I couldn’t understand what he looked like. I only knew he had one leg amputated and that the other one was in extremely bad shape.”“I felt like I was in a movie. I could see myself going about things day to day, making travel arrangements, but it didn’t seem real,” she said.The reality of what happened to her husband hit her full force when she walked into his room at Walter Reed. “He was really missing limbs. He was just laying there in a coma for several days,” she said. “I didn’t really know what to do for him. He had multiple surgeries every day for different issues he was having.”About a week after Sarah arrived, Saul woke up. Heavily medicated, he repeatedly asked his wife if they were in Hawaii. “He later told me that’s where his brain needed him to be so he could cope with what was going on,” she said.Another six to seven weeks passed before Saul started to heal both physically and mentally. “Once he got on an upswing, he wanted to feel better. He wanted to get back to a life,” Martinez said.
The Martinezes, who now reside in Montana, have been getting on with life. But it will always be challenging to heal from those memories, Sarah Martinez said.“One of the challenges of an amputee and their caregivers who are trying to help them is that every step you take is a reminder of what happened,” she said. “That’s not even touching on the mental aspects of it. When you go through that type of a trauma, every day is uncertain. You wonder if it’s going to be a good day or a bad day.”Martinez said it’s important for caregivers to seek support. “The best advice I can give is to take care of yourself,” said Martinez, noting that she also has parenting responsibilities. “You need to find time for yourself physically, emotionally, and spiritually so that you can take care of someone and do it well.” She enjoys spending time with her children, relatives, and friends, cooking, reading, traveling, swimming, and hiking.She also said a strong support system is critical. “I have people I can really trust and talk to when I’m having a hard time. I have a wonderful supportive family — my family and my in-laws,” Martinez said. “They’re always there to help.”
From the moment she greeted her younger brother James upon his return to Bloomington, Ind., American Legion Auxiliary Unit 18 member Jennifer MacKinday knew something was terribly wrong. “I could tell right away that he was in real medical trouble,” she said. “That’s when my role as caregiver started.”That was September 2005. Since then, details of the events that led to James’ medical issues steadily unraveled in appointment after appointment with medical professionals. At times, MacKinday recalled, they were going to appointments daily.She now easily recites dates and details of James’ military-related injuries, as many military caretakers do. While talking about her brother’s service, MacKinday refers to his exposure to a series of explosions, small arm exchanges, mortar rounds, and barrages of blasts. But several make the top of the list.On Jan. 25, 2005, his vehicle ran over an IED while he was on patrol in Mosul, Iraq. “The good news is that he was driving a Stryker, which is an eight-wheel heavily reinforced combat vehicle. If he had been driving a Humvee, he would have been killed,” MacKinday said.After that blast, James remained with his unit in Iraq. “His medic and the other men he served with could tell right away that he was different,” she said. “Everyone attributed it to the blast and him losing his friends. They assumed it would get better over time.”James also knew something was wrong, but he didn’t want to openly talk about it, said MacKinday, who was serving as his guardian when he decided to join the Army at the age of 17. “He hid a lot of his symptoms because he didn’t want to leave the fight,” she said. “He also didn’t want to self-identify as being wounded or weak.”Years later, medical tests revealed sustained damage to the frontal lobe; moderate TBI; cognitive and visual vestibular impairment, a disorder that causes balancing issues; and a previously undiagnosed brain bleed that had deprived him of oxygen — similar to having a stroke. He was assigned to the Warrior Transition Unit at Fort Knox, Ky., where he was medically retired and then later transferred to the Roudebush VA Medical Center in Indianapolis for continuing medical care.MacKinday was on hand to take James to doctor appointments. “We’ve had all types of appointments for years,” said MacKinday, noting that other physical injuries were revealed, including spinal cord damage from the blast, and polytrauma damage, including to the foot and elbow. “It’s complicated.”
With her new care-taking demands, MacKinday found she could no longer work. In 2011, she became one of the first caregivers in the country to receive benefits under the Caregivers and Veterans Omnibus Health Services Act of 2010. Funds provided through the Act help cover the expenses of post-9/11 military caregivers.In addition to daily concerns for her brother’s medical condition and a demanding schedule, MacKinday also struggled with feelings of guilt. She had been extremely proud of her younger brother when he wanted to enlist in the Army at the age of 17 — a move that would require him to miss out on prom and graduation ceremonies.As his legal guardian, MacKinday gave her consent, signing his enlistment papers. “That’s been a difficult thing for me to process over the years — dealing with guilty emotions about signing those enlistment papers. I was very proud of him, but I also had conflicting feelings. I knew he was doing what he was called to do.“But I never anticipated he would be attached to a unit that had such a fierce combat deployment,” she said. “I never anticipated that we would be at war for so long. At the time, we didn’t really know what was happening.”She also has feelings of guilt, as James does, related to a Dec. 21, 2004, suicide bomb attack at his military base mess hall that left 14 soldiers dead and dozens of others wounded.MacKinday, four days after the blast, finally heard that her brother survived his injuries. “After all the notifications were made to relatives, you have such a terrible guilty happiness. You feel selfish that your loved one survived, and at the same time you feel a lot of pain,” she explained. “I knew the families. I had a lot of emotions to deal with and no real support.”She also grieved her brother’s losses, including the death of his best friend in the bombing. “It was the worst day of our lives, worse than the day he was wounded. He suffers from terrible survivor’s guilt.”Throughout their difficult journeys, MacKinday and her brother found The American Legion Family was of invaluable help. “They were the first folks and the only folks who really helped us in those early years,” she recalled. “We had a family friend in The American Legion who gave my brother a free year of membership because he believed it would be encouraging for him to be around other veterans.”That gesture was particularly helpful, MacKinday said. “When you come back from a military installation and you don’t have combat veterans in town, it can be difficult to find someone who can relate,” she said. “And as a family member and a caregiver, I didn’t have that either except with The American Legion Family. They really helped us a lot, helping us navigate paperwork and finding the right people to contact when we needed a service.”
With the assistance of various programs, MacKinday was able to go back to work. In addition to the help provided by The American Legion Family, they received help through the Independence Program provided by the Wounded Warrior Project. While she works, MacKinday can rely on the program participants to take James to appointments and remind him about taking medications. “It’s priceless,” she said. “Without it, I couldn’t go back to work. And I’m a much better sister when I’m professionally engaged.”Going back to work also was essential for the benefits, MacKinday pointed out. “I didn’t have a 401(k). I didn’t have my own health care benefits,” she said. “That’s really scary. Many other caregivers have the same challenges and worries because you give up yourself.”In addition to serving on the Wounded Warriors Speak team, in which MacKinday regularly raises awareness about military caregiving, she has written books, including Friend for Life: Strangers Brought Together by the War in Iraq.“Writing is part of my healing process,” she said. “It’s something I’ve always done to make sense of everything going on in my life. I love [James] all the same, but it took me several years to grieve the person my brother once was — his mannerisms and parts of his personality changed. I also grieved the hopes and dreams we had that are no longer going to come true.”
As part of her advice to other caregivers, MacKinday said it’s important to take the first step by asking for help. “Find the people in your community who understand the experiences you’re going through,” she said. “Contact a veterans organization, like The American Legion and the VFW. If you don’t have an organization in your community, connect online. There are a number of places online where you can get support.”She realizes that caregivers and veterans may be reluctant to ask for help. “Many of these families just want to feel normal again,” she said. “They want coworkers and neighbors to treat them the same even if they know ‘I’m a combat veteran’ or ‘My spouse is disabled.’ The last thing you want do is show weakness and ask for help.”However, she said, seeking help could be one of the most significant moves you make to adapt to a new routine.“You’ll go through a period where you’re trying to figure out what is your ‘new normal’ until you can put together the structure to support you and your veteran,” she said. “It’s also important to connect to other caregivers. We can make each other stronger. If you have a problem, I can guarantee another caregiver already has solved it.”When you start making connections, you start feeling better, MacKinday added. “We’re lucky. We had a very supportive American Legion Family to alleviate our isolation. No one in our neighborhood or our church had any experience with what we were going through,” she said. “Instead of approaching us and asking how they could help, they were afraid to bring it up. It was sad. People didn’t know how to connect or talk to us.”For those who wish to help veterans and their military caregivers, the simple things can help, MacKinday added. Volunteer to mow the grass, or invite them to a barbecue, she said. Or just listen. Sometimes veterans just need someone to talk to, she said.Despite the hardships of caregiving, MacKinday said she has no regrets about her role. “I’m very humbled to have a brother who has such internal strength and such a sweet character. He would take care of me in a heartbeat,” she said. “I would do it all again. No question.”
For Liz Hunt, an ALA Unit 53 member in Washington state, the lesson on how to ask for help was a difficult one — at least initially. Now, as a mother, military caregiver, and Dole Fellow, she makes it part of her mission to get others to first identify themselves as military caregivers, and secondly, to seek out the resources to support their needs.Hunt lives in DuPont, Wash., with her husband, Rob Fidler, an Army veteran, and their two children, Skyler, 8, and Sydney, 5. When they’re out, they look like any other family, Hunt said.No one would suspect that Fidler suffers from many wounds resulting from his 28 years of service in the Army. He deployed to Iraq, Afghanistan, and other war-torn countries before being medically discharged in November 2014. While in the Army, he served in special operations and sustained injuries in combat situations throughout his career.“He looks fine,” Hunt said. “The only clue, perhaps, is if he’s having any issues at the time, he walks with a cane. He’s a classic case of invisible wounds. You can’t see what’s going on.”But all is definitely not fine for Fidler, who has a long list of service-related medical issues, including severe migraines, Post-Traumatic Stress Disorder, Traumatic Brain Injury, a damaged spine, and nerve damage. “As time has gone by, the pain has gotten much worse,” said Hunt, noting that those issues require repeated medical appointments. “We’re still exploring the things that are going on with him.”At times, the pain becomes so debilitating that they need to take him to a hospital emergency room for pain management. “We don’t necessarily talk about the things that happened to him,” Hunt said. “I’m aware, but we don’t talk about it. I realize it’s very difficult.”
It is this type of situation that makes it difficult for some people to identify as caregivers, Hunt said. When a loved one is not perceived as physically disabled, it’s hard to a care-taking role.“Sometimes I’m surprised when talking to someone I’ve known for a while that they’re actually caregivers,” Hunt said. “But they haven’t identified themselves as caregivers.” DuPont, a city where military servicemembers and their families make up the majority of the population, likely is a place with a higher percentage of caregivers than other cities.As part of her Dole fellowship, Hunt tries to help people identify as caregivers. “I don’t think it’s denial. I think people have an idea in their mind of what a caregiver is — someone who is caring for someone with visible, physical wounds,” she said. “For post-9/11 veterans, a lot of them are dealing with invisible wounds like PTSD.”She said it’s important to be specific when reaching out to military caregivers. For example, if you send a flyer announcing a support group meeting for military caregivers, there’s a good chance the people who need that support won’t respond.“If they don’t think they’re a caregiver, why would they come?” Hunt said that’s why it’s important to help people identify themselves as being in that role by posing questions like these: Do you help someone with these issues? Do you help them manage medication? Do you help them get to appointments?“There needs to be a lot of education,” Hunt emphasized.Hunt has learned to seek help from numerous sources, including the Honor & Courage hotline sponsored by Operation Ward 57. “You can call anytime to talk or text another veteran mentor who will check in on you,” she said. “When I see Rob struggling, I may text and say, ‘Hey, can you give Rob a call?’”She also seeks help through sources like The American Legion, where people can provide guidance for dealing with VA claims and other issues, and the Military and Veteran Caregiver Network, an online community for caregivers. Through various resources like these, caregivers can find assistance for very specific needs.Even now, she admits, it can be hard to simply ask for help. “Personally for me, it’s been a challenge to recognize and say when I need help,” she said. “If I’m not feeling well or if my husband is having a particularly bad day, it can get really hard, especially with two small children.”However, simply reaching out for help with things like childcare or housecleaning services can give a caregiver the respite he or she needs. “It’s important to get help,” Hunt said.
Do you do things for someone who serves or served in the Armed Forces that he or she can’t do for themselves anymore?• Do you help someone who serves or served in the Armed Forces with stress, emotional issues, anger or depression?• Do you take someone who served in the Armed Forces to medical appointments or arrange any form of health care for them?• Do you sometimes, even often, feel alone or isolated in your duties because no one around you does the same thing or seems to understand?• Do you feel you do the care responsibilities for someone who served in the Armed Forces because they are your spouse, son/daughter, friend, sibling, or other family member?If you answered YES to any of these questions, you may be a military caregiver. — Military and Veteran Caregiver Network