Caring for Veterans: A Harsh Reality for Some

Steve was called up after Sept. 11 and deployed in 2005 to Iraq, where he was hit in the back of the neck with mortar fragments and was conditioned to simply “shake it off.”  When he came home on leave, he began having trouble sleeping, experiencing problems with headaches and vision, fatigue, weight loss and confusion.

With three young children at home, he continued his job as a firefighter, while Mary was teaching school.  She began to notice changes; he would blow up at the kids, and sometimes she would find him hiding under blankets and talking about “people in black.” He failed a cognitive test and finally his co-workers told her he was having anger issues, which led to the loss of his job.  

“Over time, I was done,” says Mary.  “Our children were older, and they had developed so many issues — drug use, cutting, attempted suicide. Steve’s moods were so bad I couldn’t tell him any of this. While our son was being arrested at home for drug use, he was in the living room changing channels, totally checked out. Steve didn’t understand what was happening.”

“How do we provide emotional support to caregivers who deal with cognitive disorders?” Mary wonders. “I don’t want anyone to tell me to put the damn oxygen mask on. I miss the relationship with the person I married. It’s such a fine line between expressing what I need and upsetting the apple cart and having to deal with the consequence of what I need.”

The impossibility of self-care

Katie Wilson*, 50, from Richmond, Virginia, met her husband Bill* when they were both in the military. He’d survived a penetrating shrapnel injury to the skull while in Iraq when they started dating, but thought he was functioning OK.  She could see Bill was drinking more than he should, experiencing nightmares and letting bills go past due, but she was in love. After they married and lived together, it became obvious that he needed more care. 

“People weren’t prepared to handle brain injuries back in 2003,” Katie recalls. “I decided not to re-enlist in the Army so that I could help him, and I’ve spent our marriage focusing lots of energy on him: appointments, care, managing his deep depression, erratic moods, rage, and suicidality.  An AARP study found that 49 percent of veteran caregivers under age 60 spend more than 20 hours providing care each week.

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“I knew I couldn’t be his wife and his mother, and I was planning to divorce him before he agreed to give up alcohol, get on a mood stabilizer and let me take over the finances due to his reckless spending,” explains Katie. “But once some of the pressure was taken off me, I realized, I am not OK. I’m exhausted and have been functioning by compartmentalization and dissociation, constantly crouched against the possibility that something will happen. The police have been to our house more than once for violent outbursts.” 

At one point, Bill put a gun to her head; another time, took her phone, locked her in the basement, and sent horrible messages out through her social media account.

“Interpersonal violence in caregiving situations is something we don’t talk about,” Katie says. “I carry the chronic trauma of walking on eggshells, always worried that if I don’t do the right thing it will set him off. And if I’m not hypervigilant, he will die by suicide.  Bill’s risk for early dementia due to injury sits inside me all the time. It’s the anxiety about the future; what can we do and what are we going to do?” 

Bill and Katie have tried couples therapy without much success. Katie recently quit her job to give herself the space to invest in her own well-being. “I need to spend time on myself first,” she says, “and then maybe couples counseling would be more productive. With enough therapy, hopefully I can let go some of the anger and grief about what my life might have been like.”

Lasting trauma

Meghan Riordan Jarvis, 50, is a trauma therapist who specializes in loss and grief. She reiterates the isolation and loneliness that exists for the caregiver. “Recovery from a trauma relies on the trauma ending,” she explains. “But for the veteran caregiver, the service doesn’t end when the tour of duty does.”

“Talking about how hard the caregiving experience is over time can feel like a betrayal for spouses,” Jarvis adds. “And there is an unfortunate tendency in our society to think, ‘You married a military person, what did you expect?’ No one is completely honest about what these caregiving situations entail and what they can become.”  

Loneliness and lack of intimacy

Early in the Iraq war, Jack Swanson*, was exposed to multiple blasts, and as was customary at the time, he was told to keep going. After a back injury, he came home to San Diego to his wife, Ashley*, now 51, and retired from the Marine Corps. He was diagnosed with PTSD not long after and began struggling at work. In 2009, he experienced a breakdown, and Ashley took him to the ER, while her children were at a birthday party.

“So many things were missed about his medical issues, and it wasn’t until people looked at his entire chart that we began to understand the war’s impact,” says Ashley. When the doctors performed a complicated brain resection surgery to to put a halt to the 24 complex seizures Jack was experiencing each day, they were crushed when it didn’t work. 

“For a year afterward, Jack operated in a state of psychosis, not recognizing or trusting me, and no one was able to help. None of the doctors would acknowledge what he was experiencing,” recalls Ashley. 

After the surgery failed, Ashley describes having “a full-blown mental breakdown.”  No one in her life knew what to say or how to help. “I had called all over the country to get information and was told he was either too severe or not severe enough. He fell right in the middle because he could still walk and talk and is considered moderate-to-severely cognitively impaired.”

Ashley say as a mother and caregiver she is not bouncing back. “I used to be able to do this, used to be more resilient. I don’t know if it’s menopause, aging, depression, or if I’ve simply been doing this so long, I don’t know what to expect day in and day out.”

Ashley knows she could divorce Jack and give more to her kids — and to herself — but it’s a choice to stay in the marriage. One thing she continues to miss: The intimacy they once shared. “It’s very difficult to turn off the caregiver,” she admits. “You’re constantly manipulating your mind, convincing yourself it’s OK to be sexual with this person whose urine-soaked sheets you just washed after his seizure. It’s a different kind of love. Many times, I think that I’m still young and vibrant, that I deserve more, but I can’t. I’m tied down, and I love my husband.”  

This Veteran’s Day, when you thank a veteran for their service, be sure to turn to their caregiver and thank them too. And if you know a veteran caregiver, remember to take the time to ask them how they are doing. It might be the very thing that gets them through that day.

*Name have been changed to protect privacy