Q&A
Families and caregivers get answers
Elisabeth Sherwin, Ph.D.
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Q: Sometimes as a family member, I feel intimidated or confused when talking about acquired brain injury to professionals. How can I address this?

A: Feeling intimidated and confused when talking to an expert is quite common, many family members feel that way. My students occasionally claim that I intimidate them and that they fear their questions are foolish and that I will then think they are fools. However, in both instances, let me start by saying there is no such thing as a stupid or foolish question. It is foolish, however, not to ask and walk away with faulty assumptions about what may happen or what you are expected to do.

I find when I suspect that I may be overwhelmed by a conference with anyone, it is helpful to write down my questions. I arrange them in logical order and develop decision trees. That is, if the expert says a., I’ll ask question a.1., if they go to b., I ask question b.1. I try to anticipate the types of answers I may get so I know what kind of follow up question to ask. By taking this approach, I get the information I need. Remember that the professionals are there to serve you and your loved one. They cannot do their job if there is no communication. Much like I am astonished when an outgoing student confesses he/ she was initially scared of me, the expert may be astonished as well. Consider prefacing your questions with the admission that you are nervous about asking your questions. It might break the ice and the barriers!

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Q: It is hard for me to discuss personal physical and emotional issues about my family with members of our treatment team. Do they really need to know about our family history?

A: Yes, Yes, and Yes again! So much of effective treatment is predicated on knowledge of the individual. In fact, often the questions asked are the bare minimum because teams are very sensitive about asking questions of a personal nature. It may help to think of the team as part of your family, people who want to help and need to know you and your family member in order to do so. In fact, while your family may gossip about each other, team members are bound by strict confidentiality ethics and laws, so your secrets and confidences are very safe (even safer) with them than with family members or friends.

If answering the questions in a face-to-face interview is difficult, ask the team to write questions down and offer to provide a written response. That may be a more comfortable way to provide the information. The team can always ask you to elaborate or explain if they need you to do so. However, if you agree to this, you must be diligent in your replies and do the work.

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Q: I’m worried about my loved one’s treatment plan. What if it fails? Should ask for treatment options.

A: Once again the key is communication. Asking for options and playing out alternative scenarios is perfectly appropriate, provided the focus is on improving the outcome rather than challenging or undermining the team. You may want to preface the discussion by explaining to the team you want to explore “what-if” and “how-about”. In this way you can identify different options and the team will understand your goal.

A team will usually offer the family alternative options if there are any and they feel the family can assist with the decision-making process. Let the team know you want to take an active part in the decision-making process.

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Q: I am overwhelmed by all the details surrounding my brain injury. My friends don’t understand what I’m going through and I feel like I’m losing all my relationships. Who can I talk to?

A: Unfortunately, this is a relatively common complaint of survivors. Family members and friends are often uncertain how to treat someone with an injury: what to say, what not to say, and how to react to the changes they see or experience. Therefore, they distance themselves. Here are several things to consider. You may find it worthwhile trying to bridge the gap with your old friends - they are part of your history. While you have changed, you are not disconnected from the past. Find those friends that will work with you to build a new relationship based on who you are now. Some of the old friends may fall by the wayside, but those who are willing to make the effort will be priceless. They can bridge the gap from your past to your future.

Alternatively, you may want to seek out new friends who only know the new you. Pursue local support groups. Most states and provinces have a chapter of the Brain Injury Association and many towns have support groups facilitated by the organization. Ask your medical and rehabilitation specialists about social groups in your community.

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