Betsy's Support Site for Traumatic Brain Injury Recovery and Rehabilitation
   My mother suffered a severe traumatic brain injury in November 1999 at the age of 72. Her brain was pushed forward and crashed into the front of her skull, causing major contusions, bleeding and swelling--a subdural hematoma. The doctors did not want to operate to try to save her life. They said that it was hopeless, they all saw the CT scans, and that most likely she would die. If she lived, they informed us, at best she would be a vegetable, especially because of her age. After some convincing they reluctantly performed the surgery. 
  Other doctors informed us that she would be in a vegetative state for the rest of her life and that we should put her in a nursing home where she would have custodial care until she died. Because the doctors had seen the CT scans and thoroughly examined her, they were sure that their prognosis was correct.  
    By November of 2000 she was able to live at home with her husband. She was walking, talking, writing, feeding herself, dressing herself, joking, reading, etc. She retained both long term and short term memory. Some vegetable! The doctors are all saying "It's a miracle". Well, maybe but maybe what I did helped her. I want to lend my support to all family members and loved ones of brain injury survivors because I have been through it and know the pain, frustration and challenge that a loved one can experience, and more importantly, I want to share my theories and information with you all so that you can help to possibly make a miracle happen too.
     During this challenging time, I thought that the small, uninjured part of my mother's brain was trying to take over for the severely injured part and later, I found that this has recently been discovered to be true. The scientific name for it is neuroplasticity.
     I am not a health care professional. You must understand that these things worked with my mother, but every case is different. It is necessary to check with a health care professional that you trust before trying any of the therapy that I did with my mother..
     In my opinion, family members and loved ones hold the key to a patient's recovery. You know them better than any doctor, therapist or nurse, and they know you better than anyone. They are affected by your praise more than you can imagine, whether you are a husband, wife, father, mother, sister, brother. son, daughter, or other loved one. 
    In my opinion, brain injury survivors are highly suggestible, especially from a family member or loved one. If you consistently tell them that they will recover and constantly tell them how well they are doing, then I think they will do much better than if a family member is negative. Now that my mother is cognitive, she tells me that my praise meant everything to her and that she heard much of what I said when she was in a coma and in the "vegetative" (or non-responsive) state. 
     In my opinion, one can exercise a brain as if it were any muscle and that if a caregiver consistently works and does their own brand of therapy with a patient (of course only after a health care professional ok's it), then "miracles" may happen. For instance, when my mother didn't have short term memory, I started by mentioning things that happened 5 or 10 minutes ago, just in casual conversation. Then 20 minutes ago, then if she remembered, 30 minutes ago. And then on an on until she remembered what happened two hours ago, and then a day ago, etc. If she didn't remember, I repeated the exercise for the time period she did not remember until she did. It took a lot of patience but the payoff was quite rewarding.
    In my opinion, patience from a family member or loved one is second in importance to positive statements. It is difficult to wait until someone performs a task, but to let them do it and not do it for them in order to get the job done,is the best gift you can give your loved one. I can't tell you how long I had to wait for my mother to accomplish something "new" at each step but as I let her do it for herself, she slowly progressed, taking less and less time each time she tried. In this web site you will find other suggestions which have helped many caregivers and loved ones of TBI survivors.

Do not attempt any of the following without first receiving permission from a health care professional. Every case is different. I am only relating what happened to me and my family.

POSITIVE REINFORCEMENT: I always told my mother that she was doing great.  Even if it was coughing when she had pneumonia, or a slight move when she was in the vegetative stage, or a look that I once knew. Anything was a reason to tell her how well she was doing. Progress should always be well rewarded.  I was not above applauding or shouting with joy or doing a cheer or singing. My mother responded very well to this encouragement. I always told my mother, from the first day she was in a coma, that she was going to be fine.  I repeated it in many ways, many times.  I stressed any inkling of her progress over and over again.  Compliments are everything.  I always told her that I had 100% confidence in her and that she would make it because she was strong, brave, etc.  
BEWARE OF NEGATIVITY:  I never, if I could help it, allowed negativity to be spoken in front of my mother.  Even when she was in a coma and they said she couldn't hear, I would not let anyone say anything negative about her prognosis in her presence. If they did, I would emphatically state the opposite, even when a doctor said it.   I can't tell you how many times that happened.  My mother heard it all, even when she was comatose. This happened over and over again. Every time the doctors were proved wrong.
MUSIC AND MOVEMENT THERAPY: I played music that she loved. I moved her arms and legs around to the music that she loved when she could not move them by herself. This is called range of motion therapy. (Make sure that you check it out with a therapist to see the right was you move the individual's arms and leg before making the attempt.) Make it a party. Have fun. I know it sounds difficult, but my theory is that they are there inside and waiting to come out to play.  Of course, each time I encouraged her and complimented her on her progress as she became looser and looser, and then the payoff was when she started to help me move her.  I did this therapy every day for about 3 1/2 months until her progress went beyond that vegetative stage. Between myself and the therapists, she was having range of motion therapy three times a day.
LANGUAGE THERAPY: I often used the same expressions that Mom used while I talked to her. I assumed she heard everything I said, and even if I did not get any reaction, I normally continued a conversation with her about everyday things like nothing ever happened, frequently using expressions that she used in her life. This seemed to register with her. I read aloud articles from the newspaper that she would be interested in, even when she was in a coma.  I told her news,  mentioning names from the past mentioning names of friends, relatives, etc. I was careful in the beginning not to ask "either or" questions. Only simple ones were asked, so that she could answer them with a nod or shake of her head.
QUIET TIME: I usually talked for a time and then gave my mom quiet time, the same equal length that she was stimulated.  As she started to become more awake, when too much stimulation occurred around her, she would shut down. It was very important to let everything sink in and to give her time to digest all that was given to her.  In the beginning, when she was in a coma, I would say that she was resting and healing herself, and that sleeping was the right thing to do for now because that was how she healed herself. Little by little, I would encourage her to open her eyes but not make a big deal out of it.  When she opened her eyes I would say calmly, "That is very good," and then give her quiet time, letting her brain adjust to the new sensation of seeing the world again. And then when she closed them I would say, "Do you think you could open your eyes for me for about 20 seconds?" And after that, 30 seconds, etc. Quiet time was very important until she was wide awake but I still would pause and give her peace once in a while even after she was fully cognitive. Also, if more than one person spoke to her at a time, she would shut down. I tried to avoid two people talking to her at once or one person interrupting another person while they talked to her.  That was very confusing to her and too much for her to handle.
MASSAGE: I started massaging my mom from the  beginning, especially her feet and hands, I paid attention to her big toe on both feet, as I was told the nerves there are connected to the brain. Again, check with your health care professional before attempting this. I found that massage helped immensely, and made her feel that she was pampered and taken care of. Incidentally, her feet did not respond for about one month and a half and then her toes started curling when I rubbed her feet. That was a great moment! 
When we had to make the decision about sending my mother to a rehab facility, as the hospital gave up on her and so did the insurance, I researched all the places in the local area and chose the one with the most aggressive therapy I could find. It is very important that the center that one chooses has therapists who really care about the patient and not ones who just go through the motions while having given up on the patient in their own minds. I think that comes across.  I was very lucky that all of the therapists at the rehab who worked with my mother were marvelous and fortunately were as positive as I was about her recovery.
WORK AND COMMUNICATE WITH THE THERAPISTS: As my mother made more and more progress, I asked the therapist to include more challenges in her program.
  For instance, as I saw that she could maintain sitting balance I had her physical therapist come up to the room and work with my mother to sit on the commode in order to eventually free her from wearing diapers.  I would take a cue (more about that later) from my mother and try to guide her to another stage, working with the therapists. If I thought she was able to handle a little something more, I would suggest it, always depending on their opinion, considering the fact that they were the experts. They seemed to respond to my suggestions and the team effort worked again and again. A watchful eye to any progress is very important.  I pounced on any progress and tried to make it flourish. 
Of course everyone loves the close one that this has happened to but in a situation like this I have noticed that some people are almost afraid  to express affection.  My dad showed my mother love and romance from the very beginning, and I was always hugging and kissing her, and displayed affection to her, even in public. I would constantly repeat, "I love you so much, you are doing so great, you are the best mother anyone could ever have, etc."
MORE ENCOURAGEMENT AND CONFIDENCE: As my mother started doing things for herself, I allowed her to do them. I know this seems rather simple, but you would be surprised how many people will not let someone do things for themselves and are always doing things "to help them." I always told her she would succeed during these tasks. When my mother started feeding herself, it took time, sometimes many minutes to put the spoon in her mouth.  I let her take the time and do it without doing it for her.  A few more times like this would occur and then she was doing it like it was not a problem. If I always helped her do it, she would not have the opportunity to do it herself and then eventually, not do it for herself -- maybe not ever. 
I would put myself in my mother's position a lot and would think, what would she like to accomplish for herself, or what is making her uncomfortable or embarrassed?   Then I would try to remedy it. Sure enough, later when she was able to talk, she told me that the things I had felt that she was feeling were true.  Cues would be given to me as well from my mother as well. She would try to do something and fail, and that would be the assignment for the week -- to overcome that failure.
My mother loves lavender, so when I was allowed, I would spray that scent in her room.  I also would use her favorite perfume on her.  I suggest, if the patient has a favorite food that has cinnamon or vanilla in it, those scents are now available in spray form.  Sometimes I would get her to close her mouth by holding a fragrant flower under her nose, and say, "Close your mouth so you can smell the beautiful flower," and sometimes that would work.  
Most people have some vanity, and I appealed to my mother's vanity. Sometimes, to get her to close her mouth when she was not responding to anything else, I would say, "Close your mouth, Mom, the moisturizer goes on much better that way," or "Close your mouth, you look so much prettier that way," and sometimes she would for a few moments.  But I never forced her to do anything. If she didn't respond to flattery, I didn't pressure her.  When she was just coming out of the vegetative, (or non-responsive stage) whenever anyone complimented her on how pretty she looked in the photos we had hanging about, she would open her eyes and react.
Recognition of accomplishments is very important.  I frequently brought presents and showed her the gift, emphasizing it strongly. In the beginning, she would sometimes only open her eyes to look at the gift but that was at least something. Later on, I gave her medals and awards for her achievements. This made her feel great and encouraged her to strive for more. 
As Mom progressed, to stimulate memory, I tried a simple card game, "Concentration", in which you turn over cards and back again, until there is a matching card. Then the patient has to remember where that other matching card was. Start with only a few pairs of cards, and as the memory gets sharper, add more cards to the game. 
HONESTYI tried to tell my mother the truth at all times, without being brutally honest.   While she was in a coma, I didn't say "You're in a coma," but I told her that she was sleeping in order to heal herself, that was the right thing to do for a while, and her body would let her know when to wake up.  I told her about the coma stim program that the therapists were doing (for example, "You might feel a feather on your face, or smell a funny smell. That is a therapist looking for a reaction. Don't be afraid, just react.") I informed her of exactly what stage she was in. While she had eyes closed and no reactions, I still informed her. Later, I told her when she was in the agitated stage, so she understood exactly why she was feeling the way she was. Subsequently, as physical hurdles had to be overcome, I would frankly tell her the details of her difficulty. If I didn't, she wouldn't be aware of it. Certain things might be embarrassing for a family member to tell a loved one, but I didn't care. I cared about communication and about my mom surpassing these unmentionable difficulties. When she was walking and talking, but negative to try to re-learn simple things (like dressing herself) I told her that it was normal and natural for someone in her condition to be resistant to try "new" things again, and that she should try to overcome those feelings of negativity. Again, it was to make her aware of why she was feeling the way she was. I showed her literature about the brain injury patient when she was able to read, again treating her like the intelligent, mature woman that she is and telling her all the while that she would overcome this and be fine. 
The above is just my opinion about what happened with my mother. It may or may not work for others. All of you who have been touched by TBI have my sincerest blessings and best wishes for strength and courage to deal with this. I hope that a miracle happens for you, too.

Information, help and support for family members, caregivers, survivors, loved ones and all affected by TBI
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