There's just no way to prepare for a brain injury. One night you grab for the phone in time to hear an emergency department doctor say, "Your son's car went off the road and hit a tree." Or, while working in his garage, your brother trips and slams his head against a heavy metal shelf. He slumps to the floor unconscious. Two weeks after the accident, he doesn't remember how to drive a car.
My husband Alan suffered a massive heart attack and cardiac arrest. He had a severe anoxic brain injury from lack of oxygen. Alan received treatment in an intensive care unit (ICU) for one month, and then moved to a rehabilitation hospital for three months.
No matter how brain injury happens, upheaval hits the family like a hurricane. You are called upon to be with your loved one in an ICU surrounded by life-sustaining equipment. You have to absorb a tremendous amount of medical information quickly so you can make decisions about treatment. And you begin to prepare yourself for the uncertainty of not knowing how much damage has occurred or how recovery will progress.
Meanwhile, your body is reacting to the crisis with a flood of chemicals and hormones that make your heart beat faster, your muscles tighten up, and your stomach rumble. Your brain is asking, "Should I run away, stay and get involved, or freeze up and hope it's all a bad dream?" You're in the middle of your own form of trauma.
When brain injury strikes, everything feels out of control. I remember that my emotions were all over the place. I knew I had no control over whether Alan lived or died. I didn't know if he'd be the same person when he awoke from the coma. The doctors offered no promises that he'd regain his lost abilities.
I figured out that what I could try to control was how I responded. I could try to focus on staying in the moment. I could let Alan know that I was by his side, and that I loved him. And I could try to let go of all the things I couldn't control. You'll notice that I said "try" not "guarantee." Getting a grip on extreme stress early in the crisis takes a lot of effort, but the moments of clear focus that follow are worth it.
What can you do during the crisis stage from the accident or injury until your loved one begins rehabilitation? Here are essential strategies to try.
1. Find and befriend your breath. Crisis makes us forget how to breathe. Stop and notice your breathing. Are you breathing rapidly with shallow breaths? Are you sighing or "forgetting" to breathe? Take ten minutes to sit quietly in a comfortable chair. Close your eyes, and relax your shoulders, back, chest, and belly. Slowly inhale through your nose. No need to force the breath. Imagine your belly slowly inflating like a red balloon. Pause. Now slowly exhale through your lips. You might like to purse your lips a bit to slow down the exhalation. Imagine the balloon deflating. Take your time. Pause. Inhale and repeat. Try counting up to four (or even two) as you inhale, and counting down from four as you exhale. Practice relaxed breathing for ten minutes several times a day. Before you enter the ICU, stop and take a few relaxed breaths.
2. Let others take care of you and your family. Start practicing this skill early and it will serve you going forward. No one can do this alone. Ask a friend to start a CarePage that will enable you to update many people at once and receive messages of support.
3. Hold on tight to hope. Brain injury is like a roller coaster ride. Hope can be the red car with a wide safety belt that holds you in place as you zoom up and down the hills. Seeking solace in a faith tradition or religious practice may ground you. I'll be writing a lot more about hope in future posts.
4. Find healthy ways of rebuilding control. Yes, it's tempting to grab a martini, pick up the cigarette you quit two years ago, scream at the cafeteria worker, or kick the dog. Unfortunately, these are short-term solutions to a long-term problem. It's much better to start practicing ways to reduce stress throughout the day. Have a stabilizing routine you do for a short time daily. It might be prayer, meditation, stretching, reading a magazine with a cup of tea, or phoning a friend.
5. Think in ways that support clarity and calm. Try to focus on this moment, this day. Try to keep your "What if..." thoughts in line. Try to take in what the staff is telling you. Ask a friend to take notes for you. Recovery cannot be rushed. What seems like a tiny step forward is actually another brick paving the long path of recovery.
6. Share your feelings. Find a confidant, a friend, staff social worker or psychologist. Tell him/her what's worrying you most, or troubling you when you try to sleep. Ask questions. Write in a journal that only you will see. Don't censor yourself, just write your thoughts and feelings. You might be having a jumble of feelings that seem to contradict each other. One minute you're sure you want your family member to live and you're convinced you can go the distance to care for him. An hour later, you might hope that he dies rather than stay completely unresponsive. You might doubt you ability to care for him. Then you feel guilty for that thought. All these feelings are normal. And it's normal to have these swings as you try to make sense of this new world of brain injury. Asking for help is a sign of strength.
In my next post, I'll share some tips to manage your new responsibilities as a caregiver.