When Caregivers Respond

After Hugh had sustained his severe TBI, I immediately reacted with shock, despair, and grief. But TBI is not something that goes away in a few days or weeks.

Here’s a question well worth exploring for caregivers: Am I reacting to daily events as if in crisis mode or am I responding? After the chaos of the first days and weeks of TBI, there’s much to be done; and a lot can be at stake if things are not properly handled as time goes by.

While I learned many lessons during my time as a caregiver, I continue to learn more each day from stories other families share with me. And one thing I’ve seen repeatedly is that some individuals and families react while others respond.

Reacting usually involves our gut emotions and can happen in many ways. Some people react to a crisis or problem by shutting down while others react with hysterical crying. Some will blame others and keep lashing out at whoever is nearby. Some people might retreat into denial, numbing their reactions with alcohol or drugs.

Responding is different. While we may react to trauma or bad news with shock when it first arrives, ongoing problems demand that we respond if we want to see positive results. Responding tends toward reasoning; it involves seeing the situation clearly and developing a plan of action to achieve intentional objectives.

Time and time again, families will face new problems after a loved one’s TBI. Deficits tend to reveal themselves slowly over time. In my husband’s case, Hugh woke up from his coma with a blank stare. It was shocking to see him so out of it, but my daughters and I talked to him, tried to engage him, and reassured him as much as we could. We responded to his blankness with love and warmth, and eventually he responded in return.

As Hugh began to heal, he grew agitated; and that required a more stern approach to settle him down. Instead of yelling at him when he pulled out his IVs, a firm hand, soothing voice, and repetition proved helpful. As time went on, his executive function deficits meant he was incapable of planning or initiating activity, so we did that for him by suggesting things he could do to keep him busy and active, to keep his neurons firing.

Each new problem demanded a response if we wanted to see any progress.

There were times when either I or my daughters reacted instead of responding, and it sounded something like this: “On no, not one more thing! What else can go wrong? I’m done with this!” We slammed doors, cried our eyes out, and felt sorry for ourselves; but we had to dig ourselves out of the pit if we wanted any kind of life improvement.

Doctors at VCU’s TBI Model System of Care performed a study on resilience and found that families who openly expressed emotions, openly communicated, and saw their problems as something that could be solved by creating and carrying out a plan of action were the most resilient families of those they studied.

In contrast, when individuals consistently react instead of respond, emotions can build and build until they explode. Problems can feel suffocating and unresolvable. And when people begin to accept that their situation is hopeless, it will be. To accept hopelessness is to give up.

The next time you hear bad news or something happens that upsets you, take a moment. Remember these words: “This is hard, but there’s something I can do.”
Tell yourself: Stay calm and think.

Take a deep breath and ask yourself a few questions:

• What will help most right now?
• Can someone else handle this best, or should I?
• How can I make this better for myself, for my family?
• Who can I call for support?
• What additional information do I need and where can I get it?
• Who can I talk to honestly about my feelings?

Maintaining control over your spiraling thoughts through reasoning will feel grounding. You will most likely empathize with other family members when you think this way, and you will likely receive compassion from them in return. And here’s the really great news: the more you do this — the more you practice this skill — the better you will become at it, and the more emotionally healthy you will feel in the long run.