Brain injury is an existential condition. What’s at stake is life itself. Survivors and families turn to experts for help—specialists with knowledge and experience. But it should be reciprocated. Our expertise is what they don’t know—family history, relationships, and world view. Somehow we must be partners in a necessarily empathic, holistic process. How? Build a team.
Central is the Survivor, then their family, friends and aides (Caregivers) and doctors and therapists (Professionals). Good communication and collaboration are prerequisites, and ideally the partnership grows with mutual respect. It’s hard, but better than going it alone as too many survivors must do.
At the start I didn’t know I had a team or that I was part of it. As I slowly got involved in my own care, my sense of independence grew. That is a team’s potential—a powerful source of strength for all of us living with brain injury, as long as we keep these 5 precepts in mind:
Trust • Listen • Respect • Patience •
Ask For and Accept Help
Survivor: Trust that your best “self” is still there and that the fog will start to lift. But don’t try to go it alone. Find someone who understands you, has earned your trust, and remember they’re on your side.
Caregivers: Trust your loved one, even when he or she appears to be a stranger. What you’re seeing is the aftermath of brain injury. Good doctors and therapists are key so choose carefully, then trust them. If you don’t, change.
Professionals: Trust your patients and families enough to be honest and open about what’s ahead, but with compassion and hope.
Survivor: Keep an open mind by listening to feedback from your family and doctors. Self-awareness takes a hit after brain injury and others may see things you can’t.
Caregivers: Stop, look, and listen to what’s behind the words—your family member’s frame of mind and your own. Before replying, pause. Take a slow, deep breath and try to stay calm (you can always scream into your pillow later).
Professionals: Focus on your patients to show you’re listening. Put aside your agenda and directly address their concerns. To improve communication, model the strategies you want them to learn—verify, use stems, delay and chunk.
Survivor: Respect the person you are now—a brain injury survivor, your life upended, trying to put it right. Respect those around you too. They are your partners working towards the same goal.
Caregivers: Don’t beat yourself up when your best efforts don’t seem to be enough. Respect yourself and your team as equals even when you disagree. There is no right or wrong way to cope with brain injury.
Professionals: You’re not the only expert in the room; your patient’s living it and knows things you cannot see. Show respect by talking with them (not to them). Hospital professionals often address the caregiver not the patient. Their questions go unanswered, a spectator to their own care.
Survivor: This journey is slow and confusing, but don’t give up. It’s hard to be patient when you don’t see progress so put it in writing. Record and review your successes and celebrate each step no matter how small.
Caregivers You’re learning to live with brain injury as well as advocating for your loved one. The work is exhausting, frustrating; you’re bound to lose patience. Give yourself a break each day—music, meditation, or even a “power nap” may help.
Professionals: Even if time is short patiently add “wait time” to each interaction. Ask a question, then wait. Be alert but quiet for as long as the survivor needs to process your words, their thoughts, and find the words to answer. This gives them a sense of agency.
ASK FOR and ACCEPT HELP
Survivor: Knowing what you don’t know is a quality not a weakness. Seeking advice is how we learn and take charge of our lives. Turn to your team—they are there to help. Don’t be embarrassed to ask “what?” or “why?” It puts you in the driver’s seat.
Caregivers: When someone offers help say, “Yes, thank you,” instead of “I can do it myself,” And don’t feel guilty. Without taking care of yourself, you can’t care for someone else. Reach out to family, friends, a house of worship or support groups to help. Respite is not a luxury. It’s a necessity.
Professionals: Learn from your patient. Ask what they think, what’s working or not, how they’re coping and, if not, what would help. Brain injury makes it hard to express oneself calmly and clearly so be sure you fully understand what they’re trying to say. Follow their lead, be flexible, and willing to change gears.
For a long time I refused (fought) offers of help. Before brain injury I’d always followed my instincts, stubbornly sure I was right, so it was so hard to admit I could be wrong. When I realized how often I misheard or misspoke, I grudgingly accepted the advice of my team and learned to ask for help—gracefully and without shame. It’s funny. The more I did it the easier my life became. I now understand how important the team has been, hearing me out with trust, respect and as a fully supported partner.
To my team and friends, who’ have stuck with me through thick and thin:
I owe a you a tremendous debt of gratitude. I don’t know where I’d be today if you hadn’t taught me what I needed to know and offered your enduring support and empathy. Thank you, thank you. –Laurie