How Can We Help Each Other Going Forward?

After a trauma, people often find they can’t get rid of the shock of what just happened, of the images in their minds that feel more vivid with each passing day, of the rapid fire of thoughts that make nerves tingle, and hearts race. Looking back, and rehashing what we have lived through can feel unavoidable. And after a loved one’s TBI, it feels like it goes on forever.

I remember the look on my children’s faces as I told our story again and again to friends, strangers or relatives. Their young faces, happy to have normal, well- adjusted adults around them, screamed Not again! Do we have to go there now? Everyday?

I did.

I don’t know why I had to rehash every detail, but there I went—back to the accident, to the police report of my husband being struck by a car, to the report of him screaming at the accident scene, to his combativeness at the rescue workers as they tried to strap him to a body board. I could not stop the thoughts from coming, and my body reacted physically. I couldn’t sleep, I was often sweating profusely, I lost weight, and felt like I had a mild flu most days, but I had to take care of my family.

Since this horrific accident, an accident now fourteen years in the past, I have spoken and heard from hundreds of caregivers who have felt this same kind of ongoing stress and strain. This is why I feel so strongly that treatment for people who have sustained a TBI that results in lifelong deficits should include immediate caregivers. Counseling not only helps, it can save lives, change lives, and improve outcomes—because when a caregiver is mentally and emotionally stable, they can care for the one they love in the best way possible. When they are unstable, depressed, uninformed, and overwhelmed, they cannot be of service to anyone.

I know this is a hard truth, one that many doctors and insurance companies will scoff at, one that many people might think is unrealistic, but caring for the caregiver in tandem with the person who has a brain injury is vitally important. TBI caregivers need to be educated about brain injury and what it entails. They need to understand the specific areas of the brain that have been affected and how the injury will likely change their loved one’s functioning. In order to make a plan, caregivers need information and guidance, counseling, and, yes, any and all kinds of mindfulness training to stop the loud voices in their heads screaming, What’s next? I know it’s something horrible! I’m drowning!

Given the number of head injuries that occur in the U.S. on any given day, and the many crossover symptoms between various dementias, Alzheimer’s disease, and other brain disorders, more research, support, and psychological services are needed. What can be done? How about a college major called, “Caregiver Counseling?”

Statistics show that caregiving for someone with Alzheimer’s disease is one of the most arduous tasks a person can perform—and I would put TBI up against Alzheimer’s disease any day of the week, especially since TBI often occurs to young and middle-aged people who have long lives ahead of them, who have family responsibilities—people who have full-time jobs—and they will no longer be able to work, provide an income, or live independently.

Students and universities take note. There is a desperate need in our country for smart, compassionate professionals willing to help people who are caring for someone who has suffered the misfortune of suffering a brain injury simply by slipping on the ice or falling down the stairs or being involved in a car crash.

Personally, I’d like to see caregiver services start in the ICU; right after someone sustains a TBI—a system of help that includes education, social services, and psych counseling along the continuum. Perhaps a film could be shown to families in hospitals that would offer basic information about brain injury, curb short-term expectations, list resources, and encourage families to assemble their support system right away. I’d also like to see a flyer given to families about environmental enrichment—an approach to caregiving that has been proven to positively impact outcomes.

There’s so little out there in the form of concrete help, and I don’t have all the answers, but I know where the needs exist. Rehab requires insurance or money that many families cannot scrounge up. There are few acceptable designated living places for people with profound TBIs, and no way to pay for them, and in-home health services are expensive. There is little in the way of crisis management services to help families cope with behavioral problems that spiral out of control.

TBI is an epidemic in our country and around the world. It’s time we treat it like one and convene an integrative system of care that really works. It’s up to the families that have experienced a TBI to speak out about the services they need, to offer suggestions, and provide feedback to doctors and hospitals—honest, respectful feedback.

In a perfect world, we’d all have the medical care we need until we don’t need it anymore. For that to happen, we have to demand it. Let’s get loud.