Category: Caregivers of TBI Survivors Written by Caregiver
Summary - the cause - the injury - today's quality of life?
My husband was in a motorcycle accident that resulted in ARS along with moderate closed head TBI. He has cortical shearing, subdural hematomas, arachnoid bleeds, and multiple other issues due to trauma. He is back at work but is impulsive, has violent mood swings, short term memory loss, moodiness and poor balance from his injuries.
Please share your experience at the time you became aware of the injury?
My husband and I are both firefighters and are very familiar with motorcycle accidents and the horror that they bring. I was terrified. I knew he was wearing his helmet, so I never considered head injury or spinal cord trauma, just the morbidity that motorcycle accidents cause. When I spoke with the neurosurgeons in the emergency room, I was stunned and I distinctly remember only hearing the positive things, not being able to comprehend the magnitude of his brain injury and the road we were going to have to travel for recovery. Nothing can prepare you for that..nothing.
Tell about the experience immediately after the injury. Surgery? Coma?
Mark was in a medically induced coma for 14 days due to his thoracic trauma. He had multiple MRI's and CT scans to keep track of his bleeding brain. The bleeds were stable enough not to cause significant pressure, so surgery was not an option. He was obtunded, however, and getting him off the ventilator was difficult due to his inability to respond and his intense pain. During this time, he lost all movement of his left leg and was weak on his left side. Mark was in ICU for 16 days, then transferred to the floor of the hospital until he was stable enough to be taken into inpatient rehabilitation.
Tell us about the hospital stay after the survivor was no longer in a coma
The floor experience was terrible. Mark was combative, he was confused and he couldn't feed himself or remember to use his pain medication pump. I couldn't wait for him to be taken into inpatient rehabilitation where I knew that he needed the most help. He had physical, speech and occupational therapy at the inpatient facility until he was released to our home where the therapists came to our home daily to assist in his rehabilitation. Eventually he graduated to going back to the rehab center for out patient visits, and now he sees the doctors on a yearly basis.
Tell us about the time in rehabilitation?
Inpatient rehabilitation was the most exhausting thing that my husband had ever experienced. With his TBI, his short term memory was gone, so he constantly had to be reminded where he was and what had happened to him. The therapists were great and so incredibly patient. They taught him how to walk, write, read, focus, cook, and speak all over again.
Tell us about coming home!
This was difficult because he was so injured and fragile and confused. He didn't want to come home. The children were prepared, but our lives were so different than before, our home filled with therapists, the quirkiness of injury, the inconsistencies, the rages....it was a lot to handle. This has been a 5 year journey and we are still on it. There are good inconsistencies, the rages....it was a lot to handle. This has been a 5 year journey and we are still on it. There are good days and horrible days, but we are still moving forward and we have faith that we can redefine our normal.
"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"
Heartbroken, angry, focused, determined, lonely, afraid, faithful, lost
Tell us about life today?
As I said before, every day is an adventure. Mark continues to battle TBI, but is determined to keep going. Some days are worse than others, but we always have laughter in our home, even if I have to put Mark in "time out" and the kids and I just share a smile. It isn't easy, things are not the same...but we won't give up.
What do you want to tell others going through the same process? Treatments, understandings and actions that made a difference?
Patience and understanding are two of the greatest strengths you can hold on to...and realize when someone is sympathizing with you that they are only trying to help. Don't harbor feelings of anger, because it doesn't help anyone, especially yourself. Figure out a way not to lose who you are, you are not the one who has been altered, just the life that you once shared. And, remember above all, you are never alone.