The depths of love: Chronicling the journey from Army spouse to caregiver

Story by Elizabeth M. Collins, Soldiers Live
(DOD graphic by Peggy Frierson)

(DOD graphic by Peggy Frierson)

“I can’t remember how you find half of a number,” Brannan Vines’ husband, Spc. Caleb Vines, told her a couple of days after he returned from his second deployment to Iraq.

“Oh my,” she replied, trying to keep the fear and shock from her face. Before joining the Army, Caleb had studied civil engineering. He had a genius-level IQ. He should certainly have known basic math. “I have no idea what’s wrong,” Brannan, who had an infant at the time, remembers thinking.

A difficult journey

So began a journey that would take them from the Army to civilian life, from Army medicine to the Department of Veterans Affairs health care system and from VA hospital to VA hospital. It was a journey that would reshape their marriage, their hopes, their dreams. It was a journey for a diagnosis – a diagnosis and a treatment, but not a cure. It was far too late for that.

Caleb might have been healed if his first blast injury had been treated promptly, if he hadn’t gone on to sustain another blast injury and another and another. He might have been healed if he had been in those blasts two or three years later than he was, but Caleb’s deployments had been with the 1st Armored Division in 2003 and then again in 2005, before military and civilian experts began to truly understand the risks and the magnitude of traumatic brain injuries.

“I was just this crazy wife who kept trying to explain to people that there was something going on with my husband,” Brannan remembers, explaining that her husband suddenly had a terrible memory. He couldn’t make decisions. He had problems reading. He confused words. He suffered from headaches, light sensitivity, nausea and dizziness. He had anger issues.

“The husband I had known since I was basically a kid … was very, very different. We had gone from extremely happy … to everything in our world falling apart,” she remembered. “I sort of said, I’m not divorcing you … but I have to vacate this situation for awhile until you do something,’ which is probably the hardest thing I’ve ever done.”

Caregiving by the numbers

It took about three years before Caleb’s PTSD and TBI were properly diagnosed, and it’s a journey that’s familiar to thousands of veterans of operations in Iraq and Afghanistan, as well as some 275,000 to 1.1 million caregivers, according to a recent study by the RAND Corporation and the Elizabeth Dole Foundation for Military Families. Another study by the National Alliance for Caregiving and the United Health Foundation found that about 70 percent of caregivers are spouses and many are caring for veterans who, like Brannan’s husband, suffer from PTSD, TBI and other ailments. Brannan, other caregivers and the studies all agree: Caregiving involves every aspect of daily living, it’s emotionally and physically draining and it will go on for decades. In fact, Brannan found the process so confusing and heartrending that she founded a support site for caregivers that serves up to 100,000 people a month, FamlyofaVet.com.

Another life interrupted

It’s certainly a journey familiar to Melissa Johnson and Peg Smith* (name has been changed), who both volunteer with Family of a Vet. Melissa’s husband, Staff Sgt. Sean Johnson, was a Reservist who had previously deployed to Iraq for Operation Desert Storm and to Bosnia for Operation Joint Endeavor. He deployed to Iraq again in 2005 as an ammunition inspector, a job that repeatedly exposed him to explosions and blasts. In March 2006, he landed on his neck and “remembers seeing stars, not being able to see very well … not being able to hear, had a headache, had been hit with rocks, that type of stuff,” Melissa explained.

Sean tried to shake it off and actually boarded a plane the next day for a short trip home. He couldn’t see at night and had trouble driving, and Melissa knew something was wrong almost immediately. After Sean returned to Iraq, he contracted a salmonella infection that developed into clostridium difficile, which meant that he had 12 to 15 bouts of diarrhea and vomiting a day. Sean was medevaced to Germany several times, and when he finally came back to the States in October 2006, he was 50 pounds thinner. After months in the hospital and a medical-hold unit nine hours from his home in South Dakota, Sean was only diagnosed with medically unexplained symptoms.

He finally gave up, left the Army and went home. In addition to his gastrointestinal problems, he was angry and anxious; he suffered from nightmares and flashbacks. He would call Melissa at work to ask what noises were in the house. He’d try to perform simple tasks like changing a light bulb over and over again. He couldn’t concentrate. He had migraines. His vision kept getting worse. (Sean is now legally blind.) His balance was off. He’d yell at the kids and the dog and call them names and then not remember any of it. A firefighter in civilian life, he failed a paramedic refresher exam – a course he had instructed for years – and was forced to retire. Although his MRIs and catscans had always been normal, when the VA implemented a checklist for head injuries in 2007, Sean answered yes to all of the questions. Additional screening finally revealed the damage in March 2008.

It had been two years, and “we were at the point where I would say, ‘I don’t care what’s wrong with my husband,’” Melissa said. “‘I just want somebody to tell me what’s wrong.’” Even so, it took years and a lot of counseling for both of them to accept that things would never go back to normal. The hardest part was that Melissa eventually had to quit her job as a teacher to care for Sean, to manage his 15 medications, to take him to the emergency room if his headaches became intolerable, to make the three-hour drive to the nearest VA hospital, often multiple times a week.

“I was very bitter and I was very resentful and I hated that I felt that way,” she said. “I was angry that I had to give up my career. It wasn’t his fault and I did it willingly … but it was definitely something that was hard to deal with. And I still struggle with that.”

From deployed to homeless

When Peg’s now-husband, Spc. James Smith* (name has been changed), told her he wanted to rejoin the Washington National Guard shortly before 9-11, she fully supported his decision, assuming he would spend his time “making sandbags to protect little old ladies from floods.” Then the world changed forever. After a whirlwind wedding, James deployed to Iraq in February 2004 to work in nuclear, chemical and biological warfare, leaving Peg behind with their two small children. At one point, a friend actually told Peg that James had just dropped dead. Twelve agonizing hours later, Peg finally spoke with her husband: He had passed out from heat exhaustion and a panic attack, but other than that he was fine.

He may have been physically fine, but like so many other Soldiers, James came home a changed man. He no longer wanted to go to the beach that was just blocks from their house because the sand reminded him of the deserts of Iraq. He couldn’t keep a job. He drank. He was harsh, acting like a drill sergeant with their three- and seven-year-old children. If they didn’t pay attention, he’d cuff them on the back of the head, “all the time,” Peg said. She often wondered, “How are we ever going to survive … this?

“It was absolute chaos. I did everything to protect my children.” It took six years of arguing and finally an ultimatum: She would leave him if he didn’t go to the VA. “But I won. Like most women, I won that argument and that war.”

Things got worse before they got better, however: The VA gave James so many medications that he slept for two weeks straight and lost his job. They could no longer afford their rent and were essentially homeless. Fortunately, Peg knew to call the VA’s homeless prevention program. It connected the Smith family with a charity that helped them find a rental house.

“They paid all the deposits. They got us situated. They found us anything we needed and got Joe to go in and apply for his VA benefits. Because we were still classified as homeless … the VA expedited all of his claims,” Peg explained. They went from no rating to 100 percent in 13 months. James has a knee injury and uses a brace and a cane to walk, sleep apnea and, like Caleb and Sean, he has PTSD, although he has so far refused to go to formal counseling. And while James has yet to be formally diagnosed with a TBI, Peg says her husband experienced several roadside blasts and has problems with his memory, as well as several other cognitive issues. He takes 12 medications a day, including what Peg calls a “middle of the day Xanax fix,” especially if they’re going out.

A new normal

Leaving the house can be almost impossible some days, Peg continued in a sentiment that Brannan and Melissa echoed. Large crowds are difficult for her husband, but at the same time, James doesn’t like it if Peg leaves him alone. It stresses him if she isn’t close by or can’t be reached easily. When her sister died, Peg had to have a friend move in for a week so she could travel cross-country for the funeral, and she still called to check in multiple times a day. “He’s my responsibility,” she said.

“I end up some days literally going to bed or to hang out in my bedroom at 7:30 at night because (James) can’t settle down if I’m not settled down with him,” Peg said. Melissa said that she and Sean can spend a whole day in the same room without ever talking. It just doesn’t occur to him.

“You lose a lot of yourself,” Melissa said, pointing out that everything she does is related to Sean, “whether it’s caring for him, whether it’s my work for Family of a Vet advocating for veterans and families, my support groups, which happen to be caregivers of injured veterans. Even down to my friends, everything I do is related to him.”

Melissa’s three children are now grown or nearly grown and help out with their father, although she said it’s been a difficult road and they all have attended counseling and have struggled with depression or anxiety. With Mom and Dad at endless doctor’s appointments, they also had responsibilities thrust on them as teenagers. It would often be one of the kids who went grocery shopping or cooked dinner. All of them have gone back and forth between confusion, concern or fear for their father and resentment of his anger.

“All of his relationships with his children have been changed,” said Melissa. “They have had to learn to be caregivers. They have had to learn to modify a lot of their own behaviors. We all have: What’s going to set him off? What’s going to trigger him? What’s going to make him angry? And avoiding those things – we all learn it instinctively.”

Peg and Brannan have younger children who really don’t know any other life. It’s a world where Daddy can’t come to most school and after-school functions, where they rarely go out to eat, where it’s hard to have friends over and travel is almost impossible. With her husband’s assistance, Peg homeschools her children through an online public school. It’s easier that way: The kids can bring their schoolwork with them to their father’s many doctors’ appointments. They love their father, though: “Our son … still says that Dad’s his best friend,” Peg said.

Taking time to grieve

Brannan said many spouses who find themselves as caregivers think they have no right to feel anything but grateful that their husbands and wives came home. That spouse may have changed forever, however, and it’s OK to grieve for the person he or she used to be, she said. It’s OK to grieve for a marriage that has changed forever. It’s OK to grieve for the lost intimacy and friendship and support. It’s OK to grieve losing your status as a spouse and partner and instead becoming more like a parent.

“Everything in your life changes,” said Brannan, “the makeup of the responsibilities in the house, who you are to that person and who that person is to you. You still love each other, but it’s a very different dynamic. So all of us go through a grieving process, but lots of times people don’t realize that’s what’s happening. … We’re sort of just setting aside and pushing away (our emotions) … whether it’s sadness or anger or anxiety or whatever, because we just don’t have time. … So making the choice to go through that process is really hard … but it’s something you have to do to (start) coping (and) accepting.”

The toll of caregiving

Veteran caregivers have to find a way to do that, Brannan explained, because while the typical civilian caregiver cares for an elderly relative for about five years, Brannan, Peg, Melissa and their counterparts are in their 20s, 30s and 40s, caring for equally young patients. Most of them have decades of caregiving ahead of them, and many also have young children or teenagers at home. The stress can be overwhelming, especially as many caregivers either don’t have time or feel too guilty to take care of themselves. They have higher rates of heart disease and chronic illness than the general population, according to the RAND study.

“We’re already seeing caregivers in their 30s with significant health problems,” said Brannan. “Two caregivers I know in the last 12 months have died from stress-related illnesses. … We have rising suicide statistics. We have rising alcohol and drug abuse and … it’s sort of a scary picture. Then the problem you run into is that … most caregivers sort of act as the center point in that family’s world,” especially because many of them are caring for other family members in addition to their veteran. Melissa, for example, cared for her father as he battled terminal brain tumors. She has also developed anxiety and often plays peacemaker between her husband and children.

Finding support

All three ladies say that caregivers have to find ways to make time for themselves, but also admit that they’re really bad at it. Brannan sews. Melissa scrapbooks and takes photographs. Peg knits and scrapbooks and she’s going to college online. She gets regular manicures. Counseling has helped the women, but even more important is spending time with other caregivers, even if it’s virtually. All three have lost friends and had to confront family members who made insensitive comments or just didn’t understand that their sons or brothers would never be the same, so it’s a relief to talk to or email other spouses who can offer practical advice or even just a little reassurance. “It is a family,” said Peg, referring to the other caregivers she has met through Family of a Vet.

“That is the single most helpful thing in my life,” said Brannan, “to be able to talk to people (and not) feel like I have to qualify anything, that I don’t have to feel awkward, that I don’t have to explain a billion times why such and such would happen. But just to say, ‘Hey, this happened last night. … Has anybody else had it happen? What do I do?’ Talking about our kids: ‘OK, so your child is 10 now. Mine is seven. How did you talk to him or her when they were seven? What did you tell them?’

“There’s somebody else in the world and you’re not alone,” she continued. “It’s not just you. Because this is a very, very dark, lonely, desperate, cold, mean sort of existence at times.”

Hope

It’s not all dark for caregivers, however. For example, Peg’s family will watch movies together and talk about their days, and “there are glimpses of what we perceive as a normal life for our family every once in awhile,” she said. “I miss the old James, but I’m getting used to the new him and starting to enjoy what we have now.”

Indeed, as the years have gone by, Peg, Melissa and Brannan have found some stability, although their husbands still have bad days and weeks. It’s a very good day if Sean has accomplished one or two things, Melissa said, and she’s learned to accept that, to be happy if he makes it to a veterans’ service meeting, to be excited when he’s excited.

It would have been easy to give up on their husbands, and while all three ladies admit to making real threats if Sean, Caleb and James didn’t confront their PTSD symptoms and get help, divorce was never really an option for any of them. As Melissa put it, “I’ve always felt that if this were reversed, he would do everything that he needed to for me.

“For us, it was a commitment of ‘We are married. We are in this together.’ I can look back and see how much things have improved. … We’ve got a long way to go and it’s far from perfect, but he is out of bed. He is taking a shower. He is working with his therapist. A lot of things have gotten better. … We could conceivably live another 40 or 50 years, so we’ve got to find a way to do this and not just for us, but for the young couples.

“We have young kids coming back who are in their 20s,” she continued. “We’ve got to figure out how to do this and how to do it better and how to be there for each other. And I think it’s only by some of us being brave enough or crazy enough to share the things that go on in our own homes that we’re going to be able to do that and show them that there is some hope.”

Editor’s Note: For more information, check out the blog Brannan wrote for Soldiers with advice for new caregivers: http://soldiers.dodlive.mil/2013/11/what-i-wish-id-known-when-i-started-life-as-a-caregiver/.  For even more information, visit http://www.familyofavet.com/.

  • Linda Joy Cameron

    You are all amazing. Heroes all.