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Cover Story

Erik Schei was born outside of a U.S. Army base in Mainz, Germany, in 1984. As a toddler, he would crawl around in his Dad, Gordon’s, oversized Army boots and helmet, foreshadowing his future military career. His mom, Christine, remembers how great Erik was with his sister, Anneka, when she was born in 2000.

“She had a close bond with Erik,” says Christine. “They were attached at the hip. She would sometimes get up at night and climb into his bed to sleep with him, and he never complained. He loved to take her in his old truck to Pet Smart to look at animals, or to McDonald’s.”

Erik’s selfless attitude continued in Iraq. He was a plumber on his first tour of duty, but because he thought he could do more to protect his soldiers, he volunteered to be a .50-caliber gunner on his second tour. He even volunteered to take someone else’s place on a mission on October 26, 2005 – The day he was shot in the head by a sniper’s armor-piercing round.

“The day I was told my brother might never come home again was devastating,” says Anneka. “I sobbed and screamed. I knew in that moment my life would never be the same.”

When a warrior is severely injured, many lives change. The warrior’s parents, siblings, children, friends, and many others are impacted, sometimes in a major way. For Anneka, it meant spending far too much of her childhood in hospitals. For Erik’s younger brother, Deven, it meant serving in the military; Deven had pledged to finish what Erik started if he was injured overseas. For Christine and Gordon, it meant learning to be full-time caregivers for their eldest son, who, more than twelve years later, is still in need of constant care.

“Physically, there are days when it’s extremely hard,” says Christine. “Erik is almost 220 pounds, and he can’t move. When you pull his pants up, you have to roll him. And you have to wash him. And you have to shower him, brush his teeth, and shave him. He can never be alone. He can’t even get his own drink. He needs assistance all of the time.”

For many caregivers, long days, stress, and frustration are the norm. Not only is it physically demanding, but it also requires mental strength – and a lot of patience.

“With his brain injury, Erik has a lot of compulsive behavior,” says Christine. “He will ask for water every 10 minutes. He can be just like a 2-year-old; he’ll say, ‘mom, mom, mom, mom.’ Then I say, ‘What do you want?’ and he replies ‘nothing.’ I’m like, ‘oh my God; you’ve got to be kidding me.’ So you have your days where you need to walk away for five minutes and take a deep breath because they don’t do it on purpose. Sometimes their brain injury just gets to you.”

Beyond regular care, there are also the demands of running a household and communicating with the Department of Veterans Affairs (VA) to ensure your loved one’s medical needs are met. This makes for long days, and there is rarely time for caregivers like Christine and Gordon to care for themselves. Deven, who was injured in Afghanistan less than five years after his brother, relates his parents’ roles as caregivers to what he experienced in the military.

“As a caregiver, your health comes last,” says Deven. “Your warrior always comes first. It’s just like the military in that way; it’s about the man or woman beside you.”

In many cases, caregivers don’t have time to take care of their own needs anyway. Here is a typical day in the Schei household:

  • 5:30 - Christine wakes up and gets herself ready for the day. This includes showering, drying her hair, and getting dressed. This may be the only time she gets to herself for a while, so she has to make it count.
  • 6:00 - When the nurse’s aide arrives, Christine and the aide go into Erik’s room. Together they wash him, get him dressed, and prepare him for the day. Christine and the aide then transfer Erik to his wheelchair once he’s clean and dressed.
  • 7:00 - Christine prepares Erik a typical breakfast of oatmeal and an apple and gives him his morning medication.
  • 7:30 - Once Erik is done eating, Christine shaves him, brushes his teeth, and puts lotion on his face.
  • 8:00 - Erik’s physical therapist arrives. While he’s working on regaining movement, Christine has a laundry list of things to worry about – including her actual laundry list! During these few hours, Christine must do all chores related to running a household, including laundry, dishes, sweeping the floors, picking up the house, and making the beds.
  • 9:30 - Christine goes to the grocery store, the bank, and the post office. The only time she can leave Erik’s side is while the therapist is with him, so she jams in as much as she can during this morning session.
  • 11:00 - Christine has a doctor’s appointment. She has been having trouble with her ankle for years, so this checkup is important. If she can’t walk without pain, she can’t properly take care of Erik.
  • 12:00 - The therapist leaves and Christine returns home. After preparing Erik’s lunch, she uses this time to make phone calls and check emails. Today, Christine found out that one of Erik’s VA-approved dental treatments wasn’t paid for on time, so she has to explain the situation to a collection agency, figure out what went wrong, contact the VA for help, and hopefully, find a solution.
  • 13:00 - Christine loads Erik into the car to drive him to music therapy, which is 45 minutes away.
  • 14:00 - Erik begins music therapy. While he’s with the therapist, Christine makes more phone calls. A nurse’s aide recently quit, and Christine is pushing the agency to hire someone quickly, so her family doesn’t have a gap in service. Her morning routine would be impossible without a second set of hands, so if the agency doesn’t find a new nurse’s aide before the current one leaves, the Schei family’s routine will be shattered.
  • 16:00 - Christine and Erik return home from music therapy. Erik watches television while Christine prepares dinner.
  • 18:00 - Gordon gets home from work, and the Schei family sits down to enjoy a family meal.
  • 19:00 - After talking with his father about his day, Erik wants to use his Tobii communication device. The device reads Erik’s eye gaze and allows him to type on a computer by simply looking at letters on a large keyboard.

  • 20:00 - While Erik has been busy with his communication device, Christine washed the dishes from dinner. Now, a nurse’s aide arrives to help her get Erik ready for bed. They undress him and help him into the shower. After cleaning him, Christine and the aide get him into bed and give him some more medication. Then Christine puts on Erik’s headphones so he can listen to his favorite music – Wu-Tang Clan – until it’s time for bed.
  • 21:30 - Christine finally has time to relax, if only for a few minutes.
  • 22:30 - Christine goes to check on Erik one last time. They say prayers together, and Christine prepares him for the following day. Erik always wants to know the next day’s plans, so Christine tells him the schedule.
  • 23:00 - Christine goes to bed. She’s not always able to be in bed at 11, as there is often more paperwork to do. As Erik’s fiduciary, Christine must keep track of his expenses, as she must report them to the government, down to the penny.

As you can see, a typical day in the Schei household is packed with appointments, treatments, and chores. If Erik didn’t have music therapy, he’d have art therapy, occupational therapy, or a VA appointment – all of which are 35-60 minutes away from home. Those appointments are good news, though. They mean Erik is still improving, even after more than a decade of recovery. Despite all her family has given up, Christine knows it’s all worth it.

 

“We will never be able to do the things we thought we were going to do when we get close to retirement age,” admits Christine. “But this is my child. This is someone who went to fight for our freedom; for our protection. If he wakes up with a smile on his face every morning and doesn’t complain about it, I don’t think I have the right to, either. He’s so positive and smiling every day; it puts life in perspective.”

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