Mary-Ella Majetich is a pediatric nurse and Fellow with the Elizabeth Dole Foundation who cares for her husband Jerry, a medically retired Iraq War veteran. Founded by former Sen. Elizabeth Dole in 2012, the Elizabeth Dole Foundation advocates for military caregivers and their families.
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Before my husband Jerry and I were married, I would often take him to the hospital for appointments and procedures as his long-time friend. Jerry had been medically evacuated from Iraq after being badly burned and severely wounded by an improvised explosive device blast and gunfire.
When I was visiting him after one of his many surgeries, it was clear something was wrong. He was in agony. The medical team diagnosed it as post-traumatic stress, but I was familiar with Jerry's PTSD, and I knew his ability to handle pain. This was different. As a pediatric nurse, I was certain he was dealing with compartment syndrome, which causes severe pressure in a muscle and starves it of oxygen. I chased the surgeon down the hall and pleaded my case. Fortunately, he listened and rushed to act. If the situation had lasted many more minutes, Jerry might have lost his leg.
My medical training helped me assess Jerry's emergency, but it was what I learned as someone who spent considerable time with him that made the difference. Today, I am involved in every aspect of his medical treatment, and it has completely changed the progress of his recovery.
The Elizabeth Dole Foundation, Department of Veterans Affairs and USAA launched the Academy for Inclusive Care to train VA professionals on how to incorporate caregivers into veterans' health care teams. To date, more than 5,000 clinicians, staff, providers, caregivers, students and community members, both within and outside the VA, have enrolled in this online training. The Foundation and VA also are making inclusive care one of the focal points of their National Convening on Veteran Caregivers, a free, virtual event Oct. 29 for everyone concerned about caregiving and veterans' care.
Through the Campaign for Inclusive Care, the VA is well on its way to becoming a model health system for empowering caregivers. However, because changing organizational cultures takes time, caregivers still may need to demonstrate to medical professionals that they should be part of their veteran's health care team. Here are five steps I would recommend to my fellow caregivers:
- Recognize your own worth. As Jerry's wife and caregiver, I see his memory issues, sleepless nights, patterns in behavior, and the pain he tries to ignore. I have insights not available to even the best doctors.
- Establish lines of communication with medical teams. This process starts with making a connection to someone on his team who is responsive and can get you answers when you need them. I start with the admin staff, though I am not opposed to going higher. I also ask all health care providers to note my phone number as Jerry's primary contact.
- Know your rights. I have had doctors ask me, "What are you doing here?" Other staff have refused to let me in the door, thinking Jerry might not openly share his symptoms if I was in the room. Remember, as a designated primary caregiver, you have a right to be there. If you encounter roadblocks, ask to speak with your veteran's patient advocate and your caregiver coordinator, if one is assigned.
- Be persistent, but keep your temper in check. I never hesitate to ask for a person's name and the name of their manager. That said, I know I have to trust that our health care providers do want the best for Jerry, so there are times when I have to find the strength to be patient.
- Have a plan with your veteran. Before your veteran's appointment, discuss what you want to report to the medical team and agree on what you want to accomplish during the meeting. Perhaps you want to leave the appointment with an adjusted treatment plan, new medication, or revised diagnosis. Agree to your priorities and stick to them.
As you join your veteran's health care team, remember that most of us are not trained for this role. Even as a nurse, I have struggled after hearing a diagnosis, or a new set of test results. Give yourself time to process hard news and never forget to take breaks for yourself. We are invaluable to our veterans, but we can care for them only if we care for ourselves too.