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Since we authored this page in 1997, we have answered thousands of calls from TBI survivors and their family members. My paralegal Jayne answers most of those calls (800-992-9447), and here is what she told me the words you are likely to ask:
"What they really WANT to hear are the words that their loved one will wake up, that we have all the answers, and we know what to do. They have never thought about coma or brain injury until this tragedy and their heads are spinning. They want to tell someone the entire messed up, confusing, painful story of how all of this happened. They want someone to listen to all of the details and then give them an answer they want to hear.
"They need us to be able to listen first, then they need us to be able to give them advice on many topics….best hospital facilities, best doctors, best treatment, best rehab facilities, and how to pay for all of these. When their loved one is a coma, they want nothing more than for them to wake up.
"Our office gently tells families what they NEED to hear….not want they want to hear. They need to hear the facts about coma and brain injury, the chances of recovery, and where they go from this point forward in their lives.
"They want to know the definition of all the medical terms they are hearing from the doctors and nurses. They want to know what recovery for a coma patient looks like. They want to hear that other people have been in a coma, woke up and went on to live life.
"Then after all of that….they want to know what they can do legally.
"They want a person to talk to, not a form on a website to fill in the blanks and wait for a call back, maybe. They are usually calling from a hospital and want to talk to a person immediately when they place the phone call. They are mentally prepared to talk about the situation and don't want to wait for a return phone call.
"They want to know that we really care about their loved one."
Below is the some of the words of advice we have been giving in answer to those questions since 1997. For more about recovery and family issues, see our page Coma, What Now? which incorporates some of what we have learned from our TBI Voices project.
When a patient is in an ICU, family members and friends will all want to help. Following are suggestions of things that you, as concerned family members and friends, can do to help.
You will not be helping the patient by becoming ill yourself. Your loved one is in the care of a trained medical team. No one can predict the rate of recovery, so it is important that you try to return to a routine that is as normal as possible.
Often people in your situation feel uncomfortable about accepting help from others. By accepting help from those who offer, you are allowing them to take some action; to do SOMETHING. If someone asks what they can do to help, don't be afraid to ask for simple things like babysitting one day or bringing a meal. Your life at home may feel slightly overwhelming at this time, so allow friends and neighbors to help.
During the first few hours and days, most people are running on adrenaline. This may be the best time for you to deal with some of the issues surrounding the condition of your family member. There is not much you can do for the person in a coma at this point, most decisions are being made by the medical team, and taking action may help you to cope with the stress you are feeling at this difficult time.
Buy a book to put phone numbers in. You will need to call employers, insurance carriers, friends, family, an attorney, etc. It is easier if you make this a separate book that you can check each day to remind you of phone calls to make. When you are exhausted with status reports, this book can serve as a guide that someone else may use to take over the task of informing family members and friends of the progress of the patient. It can be very exhausting to keep everyone updated in the first weeks.
Be sure and jot down notes during your calls. As you continue through the process of waiting, you may forget what you were told, or how you were supposed to follow up on the information you received.
Every brain injury is unique. No one knows how much the person in a coma is aware of his/her surroundings. Some people remember very vividly what was going on around them while they were in a coma. Other people do not. Most people do not remember physical sensations while they were comatose.
It is generally accepted that speaking positively while in the presence of someone who is in a coma is beneficial. Talking to them, telling them about your day as you normally would, reading cards that have been sent...these things help with recovery.
Occasionally the comatose patient can become agitated by too much stimulation; that's when its a good time to just sit and hold a hand.
When discussing the patient in their presence, always be aware that what you say may be heard. Never speak as if they weren't there.
As soon as the ICU staff allows: Every day write the date in large letters on a large piece of paper. Tape this where the patient can see it. This helps to orient the patient.
Always begin your visits with your name. "Hi, its me,____."
Remember the recovery of consciousness is a gradual process and is not just a matter of "waking up" as people often imagine.
Loving care from family members is important to the recovery process. It is also a positive way to spend time with the patient as well as a learning process for family members.
A journal may not only serve as a method for coping with grief, it may also be helpful for the patient.
Families are encouraged to learn about brain injuries so they will be able to help the brain-injured person recover to the fullest extent possible.
Attorney Gordon S. Johnson, Jr.
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