Ten Tips to Manage New TBI Caregiver Responsibilities

Posted by Janet Cromer

February 16, 2011

Ten Tips to Manage New TBI Caregiver Responsibilities

Are you a new caregiver for a family member who recently sustained a brain injury? Are you struggling with all of the responsibilities and tasks?  The crisis stage of brain injury treatment covers the time when your family member is in the intensive care unit, until he/she begins early rehabilitation.

When my husband Alan suffered a severe anoxic brain injury from a cardiac arrest I had to make countless decisions, process shifting medical information, and take care of our lives outside the ICU. You are very likely dealing with those responsibilities, plus others. Often there is no training, preparation, or consent involved. You get the call, and step into the role.

Your new responsibilities might include:

      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!

Ten Tips to Manage New Responsibilities

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 for one consistent professional who can give you daily updates and answer questions.
 
4. Learn everything you can. If the hospital offers 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. Take your time with decisions. Ask for all the information available. Consult with anyone who can help you decide. You may want to talk to the hospital chaplain, ethicist, or social worker. Write down the pros, cons, and alternatives for every decision. 

6. 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 might mean. Sometimes the change is a good sign, but it doesn’t always mean progress. 

7. 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. 

8. Let the team know your priorities. 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? 

9. Become familiar with the Family and Medical Leave Act to become familiar with your rights. Talk with the Human Resource Department at your job 

10. Involve trusted family members or friends to help to care for 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 the children to visit. There may be a social worker or child life specialist who can give information at your child’s age level.

Janet is the author of Professor Cromer Learns to Read: A Couple’s New Life after Brain Injury. Visit Janet’s website at http://janetcromer.com/ and her blog at http://janetcromer.com/blog.

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