Sharon from Arizona
When my son Derek joined the Army in August of 2005, I became a military mom. When he exited the Army in February of 2015, I became a Veteran caregiver.
Between 2005 and 2015, Derek sustained multiple injuries from RPG explosions, mortar blasts, gunshots, and more. Thanks to body armor, properly fortified vehicles, and poor marksmanship on the part of the enemy, none of his injuries were life threatening. But even unbroken bodies become immeasurably damaged when they are thrown around like a rag doll, over and over again. Three deployments to front line combat posts took their toll, and, at 27, his young spine resembled that of an old man.
Before becoming a caregiver, my husband and I were average 50+ AARP members. Our children were grown — Derek was in the military, our oldest daughter was on her own, our youngest son was in college, and our baby would be out of high school in a few years.
After reading a great article in AARP magazine, I decided it was finally time to finish my degree. I graduated in 2014 and went back to work — making more money than I’d ever made. After years of raising kids and struggling to make ends meet, we were on a good financial track, we had retirement in our future, and we were enjoying this stage of our life.
When Derek came home in 2015, we knew he needed neurosurgery to deal with damage to his cervical discs, but we didn’t realize how much help he would need. He’d been diagnosed with post-concussion syndrome from multiple traumatic brain injuries (TBIs), but, at the time, we really had no idea what that meant.
Derek spent about two months trying to navigate the Phoenix VA on his own, but the VA system is confusing for anyone, let alone someone with multiple TBIs. When neurosurgery consults were delayed and all but ignored, I knew it was time to step in. I quit work to get things squared away — just for a few months, I thought.
I looked for guidance, but found very few parents in my situation. I know we are not the only ones living this life, but finding peer support was extremely difficult, so I just started learning the system.
In July of 2015, Derek finally had surgery to fuse his C6-C7 cervical vertebrae, but the surgery had complications. His vocal cord was paralyzed, he developed lymphedema, and his fusion didn’t take. He was in constant pain, but the VA wanted him off all pain meds, so they spent the next year tell us the surgery was a success. I spent much of my time trying to get the VA to realize that things hadn’t gone as they thought.
In 2016, we realized that, at some level, helping Derek was going to be a forever job, so we took stock of our new situation. Living in the tiny room he’d grown up in, with no space for medical equipment, no privacy, and no opportunity for independence was not good for Derek. Living with our adult child, with no privacy, and minimal community support was not good for us. We'd planned to retire in AZ where a lot of my family lives. Prescott is a close-knit mountain community with a classic small-town feel. We’d already purchased a home there to enjoy on the weekends, but, we were far from being able to retire.
In January of 2017, we began the arduous task of selling both homes and started looking for something that worked for all of us. In July, we moved in. A small house for us, a guesthouse for Derek, property for our dogs, wonderful neighbors, and walking/biking paths that led to some amazing restaurants. It met all of our needs and allowed us to set new, healthy, family goals — like bike riding, gardening, and archery.
I gave up looking for peers that looked like me and joined organizations like the Elizabeth Dole Foundation’s Hidden Heroes, and Operation Homefront’s Hearts of Valor. In these organizations, I’ve found love, support, guidance, mentorship, and a place to grow as a caregiver. Most of my mentors are spouse-caregivers, but I did find a few parent- and sibling-caregivers. We come from every state, age, ethnicity, and political affiliation, but we all care for a disabled Veteran and that is our common ground.
In February of 2018, I became an Elizabeth Dole Fellow for the state of Arizona. As a Dole Fellow, I spend time advocating for other Veteran caregivers and raising awareness of the issues that parent caregivers face — the tax burden we faced when selling two homes in one year, parent caregivers don’t receive base access or college benefits, and parent caregivers can’t waive student loans like spouse-caregivers can. I’m also trying to raise awareness and change the way the military discharges Veteran’s with non-catastrophic injuries. Mild traumatic brain injury (mTBI) is the signature injury of the Iraq and Afghanistan wars, but there is limited to no transition strategy for Veterans with multiple mTBI.
Recently, I had another difficult lesson. A caregiver and friend died, leaving her disabled husband in a difficult situation. Her death taught me that, as a parent, I have to plan for outliving my son. But, the VA system does not facilitate forward thinking goals for it’s caregivers —teamwork and job-sharing are actually frowned upon in many states.
It became very important to me that I know that my son was cared for, no matter what happened to me. I needed a team that would be there when I was gone, I needed to stop doing everything, and I needed to take back some of my life. My youngest son agreed to help, so he is learning to co-caregive with me, I’ve gone back to work, and, bonus, I hired someone to help me clean!
Today, I’m the mentor I looked for when I started out, I feel good about the work I’m doing, I’m excited about the goals we’ve set as a family, and my future is full of hope.