By Dr. Roxana Delgado, 2015 Dole Caregiver Fellow, Texas
Co-founder, TBI Warrior Foundation
Professor, UT Health San Antonio
Caregiving has never been and will never be a one-size-fits-all experience. Our journeys may differ, but one common element among most of us is remembering the day it all changed. It may have been a phone call, a new diagnosis, or a healthcare visit. Caregiving knocked on our door, and because of love and commitment, we welcome this new role and responsibility in our lives.
Almost 16 years ago, I experienced my life-changing event. My husband sustained a traumatic brain injury (TBI) with a cluster of comorbidities, commonly known as polytrauma, when an explosive formed projectile struck his vehicle during his third deployment to Iraq. TBI refers to a brain injury that is caused by an outside force. TBI can be caused by a forceful bump, blow, or jolt to the head or body, or from an object entering the brain. Not all blows or jolts to the head result in TBI. (Source: National Institute of Neurological Disorders and Stroke). TBI has been referred to as the invisible signature wound of war, but for those of us who get to see the day-to-day impact of TBI, we don’t consider it invisible. In the beginning, it was so difficult to understand my husband’s injury and how to find help for him. I quickly realized that many families were on the same quest and needed a better understanding and education. During my sleepless nights, I remember thinking about the possible consequences and my ability to conquer the emotions of uncertainty and loss while navigating the complexity of care for a person with a TBI.
March is Traumatic/Brain Injury Awareness Month, so I want to dedicate this blog to the caregivers of a loved one or friend experiencing the effects of TBI. It is well known that each TBI is different, and the prognosis, diagnosis, or medical approach may vary from person to person. It can affect the person physically, cognitively, emotionally, and socially. Likewise, I like to tell caregivers that it is okay if not everything always makes sense. You may or may not relate to what I am about to say, but I find that my biggest challenge is the sense of loss. The loss of the person your loved one or friend used to be, also known as ambiguous loss, is vastly studied, but that doesn’t make it any easier. It is sometimes one of the most devastating feelings. This sense of grief is one of the most I keep hearing from caregivers, and I did experience this myself.
However, I also want to ensure we address the loss of oneself. The sense of who you are, your goals and dreams—all of that can change in your role as a caregiver. Understanding this concept and addressing this sense of loss is essential to your healing process. As a caregiver, you navigate a journey that can be filled with challenges but also present opportunities. It is essential to utilize the many resources available to address the challenges and critical needs that arise in our lives as caregivers and, at the same time, identify opportunities that will help us grow, heal, and thrive.
In 2018, my husband, SFC (Ret.) Victor Medina and I created the TBI Warrior Foundation to improve the quality of life of people with TBI. While we experienced many challenges, we also rose from the ashes and have a mission inspired by the many lives that have touched ours. Today, after overcoming many obstacles, Victor is a certified rehabilitation counselor, helping people with disabilities find their way to success and independence. I am a now health scientist exploring how to understand the effects of caregiving so we can improve caregivers’ lives. Caregiving is a labor of love and commitment, and I would like to share ten things about TBI and caring for someone with a TBI:
- Learn as much as possible about the injury and, more importantly, the strategies for coping with disabilities.
- The complexity of care for a brain injury requires much care coordination. Keep documentation about all the medical care as well as medications. Many times, Veterans with TBI will have multiple prescriptions—it is essential to request a medication reconciliation, which is a professional evaluation of the combination of prescriptions by the provider.
- Most people with TBI (depending on the severity) can experience success after the injury with adequate resources and reasonable accommodations when returning to the workplace or school settings.
- Not all TBIs are the same, so avoid comparing injuries, but strive to learn from your peers the strategies that helped them.
- Be an encourager, and as a caregiver, try to find ways to promote the person’s independence. In the long run, this will be one of your best assets in your caregiving journey.
- Love for yourself is critical. Your ability to be an effective caregiver will depend on how much you think about and care for your health and well-being. It is beneficial to join adequate peer support groups and participate in other activities.
- Caregiving is a role and should not be your identity. Strive to define who you are and your goals, even if, at times, those may suffer a delay.
- Not everyone will understand the effects of a TBI. Adapting your lifestyle and family environment is very personal and beneficial to you and your loved ones.
- Isolation is not the solution. Families with TBI tend to isolate, but this opens the door to other adverse outcomes.
- Be your best advocate, be a TBI Warrior, and aim to conquer with the support of a network of resources available to you and your loved one.
Resources:
Favorite books about TBI and Ambiguous Loss:
Living with Brain Injury: A Guide for Patients and Families by Richard Senelick, MD
Ambiguous Loss: Learning to Live with Unresolved Grief by Pauline Boss, PhD
