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Caregiving

Eight Strategies to Get a Grip on Brain Injury Caregiver Responsibilities

Essential tips to help caregivers organize, decide,and participate.

Are you a new caregiver for a family member who recently suffered a brain injury? The crisis period of early brain injury treatment includes the time when your family member receives treatment in the intensive care unit until he/she begins early rehabilitation.

Within hours of the injury, you are called upon to take in complex medical information, make countless serious decisions, and become the voice of, and advocate for, your injured family member. You begin to accumulate piles of reports, insurance forms to complete, educational information, and physicians' names. The information and decisions swirl around like a cyclone.

The only guarantee the staff might be able to give you is that uncertainty will be a constant companion for the foreseeable future. That's because it's much too early to predict how extensive the damage may be, what kind of rehabilitation will help him/her regain lost functions, or what the final outcome will be.

When the cyclone sets you down, you remember that you have children to care for, a job to hold on to, and myriad other obligations. How can you begin to get a grip on these overwhelming responsibilities? Here are a few tips:

1. Carry an organized notebook everywhere. I found a 3 ring binder to be ideal. Label notebook sections for medical info, test results, treatments, insurance issues, contacts, and your ongoing list of questions. Ask the staff to give you the most important information in written form. Ask for diagrams and pictures.

2. Label the first section of the notebook "Self Care." Jot down a list of short phrases that give you hope, comfort, or peace. The list might include prayers, inspirational sayings, a friend's bolstering words, or "Breathe." Keep a running list of ways friends can take over a task or help you care for yourself. I'm an inveterate list maker, so I left myself reminders to sit in the hospital garden and watch the sparrows, or a string of feelings to share when I called a friend that evening. Carry a few uplifting or cherished photographs. Dedicate some pages as an instant journal just for your feelings, thoughts, and images. And every night, take a few moments to appreciate that you are doing a tremendous job in a very challenging situation.

3. Gather all the information you can before making decisions. Ask the staff to translate medical information into plain English. Ask what might happen if this treatment/medication is used. What are the potential benefits and side-effects? What might happen if this treatment is not given? Are there alternative treatments to consider? IS the treatment you are proposing a proven or experimental treatment?

Consult with anyone who can help clarify the decision process. How about a friend who know the patient's values and wishes? You might find it helpful to talk to a hospital chaplain or social worker, in addition to medical professionals. Most hospitals now have an ethics committee, and representatives are available to explore concerns with families. In my next post, I'll share my process of developing a moral compass to make decisions on my husband's behalf.

4. Partner with the medical team. You share the goal of providing and obtaining the best care possible for the survivor. Aim to have a family member or close friend by the bedside round the clock. Everyone needs an advocate in the hospital. State your questions and preferences directly. Expect the staff to speak to you with respect, and return the courtesy. Emotions and tempers sometimes run high in a crisis. Deal with problems up front, and then refocus on the goal. If you can't work out a conflict, speak to the hospital ombudsman or patient representative. Appreciate that you know the patient better than the staff ever will. Point out when he/she is waking up, making familiar gestures, or in pain. Listen to the staff's opinion about what that change might mean.

5. Let the team know your priorities. Ask if it's time to focus on that area yet. Brain injury recovery proceeds in slow, tiny, amazing, powerful steps, so try to collaborate on setting priorities. Ask how you can participate. Can you hold her hand, give her a bath, or read to her?

6. Take advantage of every opportunity to learn. This applies to the crisis period, and extends through rehabilitation. The hospital Patient and Family Resource Center is a great place to get help using the Internet to look up information, browse books and journals, and start to collect resources. Two solid sources for brain injury information are the Brain Injury Association of America, and Brainline.org. If the hospital offers classes or support groups for families, make sure to attend. You might feel too tired or worried, but this is your chance to ask questions and hear how others cope. Once your family member leaves the hospital, it's much harder to find opportunities to get answers and build skills.

7. Ask a friend to start organizing a circle of support. A circle brings together a community of people who sign up to help with all the tasks that keep life running smoothly. There are several comprehensive models online, including Lotsa Helping Hands

. Involve trusted family and friends in caring for your children while you are needed at the hospital. If you think your children could benefit from visiting the patient, ask the staff how to best prepare them for the visit.

8. Look into the Family and Medical Leave Act. Become familiar with your rights. Talk to the Human Resources Department at your job.

In future posts, I'll go into more depth about how to cope with uncertainty and sustain hope after brain injury.

Please share your tips for getting a grip on caregiver responsibilities in the Comments section below.

Resources:
Prowe, Garry. Successfully Surviving a Brain Injury: A Family Guidebook from the Emergency Room to Selecting a Rehabilitation Facility. Brain Injury Success Books, 2010.

Capossela, C. and Warnock, S. Share the Care: How to Organize a Group to Care for Someone Who Is Seriously Ill. Fireside Books, 1995.

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