Caregiver Stories

“be strong for your child/sibling/spouse/friend”

Category: Family of TBI Survivors Written by Family Member

Summary - the cause - the injury - today's quality of life?

Son, age 11, on bicycle in 1983 crossing major intersection in Frankfurt, Germany, hit by a car and thrown 100 meters into air and landed at opposite side of the street on his head (no helmets).  No broken bones, just TBI to both frontal and rear areas of brain.  3 mos. induced coma, 9 mos. in intensive care unit in German Uni-Klinik, and 2+ years in German Rehab center.  Today, lives in own

apartment 1 mile from Mom and has assistive staff mornings and evenings.  Works in sheltered workshop doing ceramics.  Has girl friend and companion dog and has good quality of life with excellent support group around him.  Downside is little or no contact with Father, who cannot cope with son not being a "perfect" person.  Brother lives in Europe and calls a couple of times a month and visits often when they can get to this side of the pond.  Brother tries two compensate for father's lack of support.

Please share your experience at the time you became aware of the injury?

Had just come home from work and wondered where Ed was, as he was supposed to have been at the youth center.  Neighbor boy rang bell and said that there was an accident at corner about a mile away.  We got in car and went to scene.  Husband went to see what was up and I stayed in car.  MP's were at scene and female MP came to car and said that we would follow ambulance to hospital.  They first took Ed to nearest facility to get him stabilized.  Then they transported him across town to Uni-Klinik and we followed in car not knowing where we were going.  At the hospital, they took him to surgery and doctors came and explained to us that they were inserting a "Richmond Screw" in his head in order to monitor his brain.  Shock, numbness, great sadness, but had inner strength that kept me sane.  Was able to see him after a number of hours when they moved him to the children's intensive care unit.  I spent the next months almost entirely at Ed's bedside.  Had a great employer who gave me four months paid leave to spend at bedside in hospital.  German hospital staff were the greatest and really gave great support.  Put pictures all around Ed's bed and played music constantly (John Denver, Willie Nelson, and Neil Diamond - all his favorites) and just touched his skin with my hands.

Tell about the experience immediately after the injury.  Surgery? Coma

Tell us about the hospital stay after the survivor was no longer in a coma

Tell us about the time in rehabilitation?

 2+ years in German Rehab center near Heidelberg.  Concentration was on Physical/Occupational Therapy.  We drove down every Saturday morning, picked Ed up and brought him home to Frankfurt.  Drove him back down on Sunday afternoons.  Ed had many surgeries to give him more muscle flexibility in arms, legs, ankles.  Eye surgery to lessen double vision.  Staff and doctors were fabulous and most spoke English well enough.  Ed did have some school classes with a teacher who came two or three times a week.  He did use some English books that I was able to provide.

Tell us about coming home

In April 1986, we brought Ed home and he entered a German school for special needs population.  The school provided the necessary classes in all areas for the pupils to advance and complete their elementary/middle school education needs.  He also received riding therapy thru the school once a month.  He did have instances of aggression and we had to learn to deal with these episodes and to help Ed understand how to deal.  Also, Ed had many seizures throughout this period and it continued after Ed and I came to live in Arizona in 1993.  The medicines had to be continually monitored to help.

Please type some single words that describe how TBI has touched your life. For example: Frightened, confused, sad, etc. Enter as many or as few words as you like. Separate each word with a comma" 

Devastated, sad, angry, frustrated, determined, curious, assertive, activist, proud

Tell us about life today

Ed has a terrific support group of staff, friends, brother and family.  Ed loves to go to Wal-Mart in the near location to his apartment.  Ed loves to spend time with his girlfriend and his dog.  Mom now is able to relax a bit and loves dancing, theater, eating out with friends.  Ed and Mom go to brunch on Sundays and enjoy the day together taking short drives in the area.  Ed also takes an annual trip somewhere with his favorite staff.  Ed has a "baclofen" pump implanted in his abdomen (since 2003) so that this med can be immediately (24xs7) delivered to his spine.  This has almost entirely erradicated any seizures/spasms.  Maybe has one every other month or so.  Great for Ed!

What do you want to tell others going through the same process? Treatments, understandings and actions that made a difference

Keep up your health and strength, so that you can be strong for your child/sibling/spouse/friend.  Be always curious and ask questions of all medical personnel, care providers, etc.  Always be on the look out for new treatments, therapies, ways to improve the quality of life.  Network with others.

RespondentID 

1088177789      

 Has your life  been touched by a Traumatic Brain Injury How?

Yes, Family