Brain Injury Caregiver- Crisis Management Survival Skills

The Resilient Caregiver Series- Tip Sheet #4

The crisis stage of brain injury treatment covers the time from when your family member is in the intensive care unit, until he/she begins early rehabilitation.

During the brain injury crisis period, the family caregiver has to take on several responsibilities and tasks. Often there is no training, preparation, or consent involved. You get the call, and step into the role.

Your management responsibilities might include:

• Taking steps to gain control of the situation in healthy ways.
• Begin to understand complicated medical information.
• Make major decisions on behalf of your family member.
• Become the voice of the brain injury survivor.
• Advocate for the patient.
• Organize and track medical, insurance, business, and personal information.
• Participate in some treatments.
• Keep your family running smoothly. Make sure your children are well cared for.
• Arrange time away from your job.

Whew! No wonder you feel overwhelmed!

Take a moment to read Tip Sheet #3 on “Emotional Survival Skills.” before you continue. Learning new ways to manage new stressors is a key skill for caregivers.

Caregiver Responsibility Survival Skills

1. Get a notebook and keep it with you. A 3-ring binder works best. Ask for the most important information in written form. Ask for pictures and diagrams.

2. Label notebook sections for “medical info, test results, treatments, insurance, business, and self-care.

3. Ask the team to identify a consistent professional who can give you daily updates and answer questions.

4. Take advantage of every opportunity to learn. If the hospital offers brain injury classes for caregivers, make sure to attend. This is your chance to ask questions and hear how others are coping. Once your loved one leaves the hospital, opportunities for you to learn and seek support will be harder to find.

5. Before making a decision, ask for all the information available. Take as much time as you can, and consult with anyone who can help you decide. You may want to talk to the hospital chaplain or social worker.

6. Bring in photographs of the patient. Tell the nurses and doctors brief stories about who he is as a person. Make him real to them.

7. Appreciate that you know the patient better than the staff ever will. Offer your opinions, point out when he is waking up, in pain, or making familiar gestures. Listen to what they say about what that gesture or change might mean. Sometimes the change is a good sign, but sometimes it doesn’t mean as much as we hope it does.

8. Speak to the staff with respect, and expect them to treat you with respect. State your question or preference directly. You are all on the same team, with the goal of the best treatment for the patient. If you can’t work out a problem, speak to the hospital ombudsman or patient representative.

9. Trust your intuition and gut feelings to point out concerns and areas that need attention.

10. Let the team know what parts of treatment are most important to you. Ask if it’s time to focus on that area yet. Ask how you can participate. Can you hold her hand, give her a bath, or read to her?

11. Talk with the Human Resource Department at your job. Look into the Family and Medical Leave Act to become familiar with your rights.

12. Ask a few trusted family members or friends to be very involved with your children while your loved one is hospitalized. They can be supportive and maintain routines as much as possible. Ask the staff how to prepare your children to visit. There may be a social worker or child life specialist who can give information at your child’s age level.

We all need guides along the way during brain injury recovery. There are two books I recommend highly for caregivers in the crisis stage. The first is Mindstorms: The Complete Guide for Families Living with Brain Injury by John W. Cassidy, MD. This book offers an easy-to-read introduction to everything important to know about the causes and treatment of brain injury, and how to deal with problems later on.

The second book is Successfully Surviving a Brain Injury: A Family Guidebook, From the Emergency Room to Selecting a Rehabilitation Facility by Garry Prowe. Garry and his wife Jessica, who has a brain injury, put together a comprehensive guide which is valuable to every family. Chock full of information and checklists, this book is an advocate’s best friend. The book is also useful when making decisions about treatment and rehabilitation options.