Caregiver Stories

Family of TBI Survivor #12

Category: Family of TBI Survivors Published on Saturday, 07 May 2011 21:57 Written by Family Member

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

My father was in a car accident in which a high-profile vehicle struck him on the driver's side of the car. He was in a late-model vehicle without side impact air bags (not sure if it would have made a difference). Today he has severe diffuse axonal injury, and is unable to communicate in any meaningful way and recognizes very few people.

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

Received a call from mom saying that father was in accident and not responding and that they had airlifted him to the hospital. I was in total shock, and thought he'd probably be gone by the time I arrived at the hospital three hours away.

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

There was a small amount of bleeding, which quickly dissipated and surgery was not necessary. Initially we were very encouraged because the cat scans showed little bleeding and swelling, and we were told Dad had a very healthy brain for his age. He was in a coma for 5 weeks, and minimally responsive to commands during that time. He was never able to consistently respond to commands.

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

After three weeks he was moved to a rehabilitation floor, where he stayed until he was more responsive. He was discharged to a rehabilitation/skilled nursing unit after 6 weeks.

Tell us about the time in rehabilitation?

There was no rehabilitation. My father's injuries were so severe, that we were told he could not be rehabilitated. He became increasingly agitated, non-responsive, and atrophied in nursing care and we eventually put him in Hospice care because he needed artificial nutrition on a permanent basis and this is not what he wanted (according to his living will).

Tell us about coming home!

He never came home.

"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"

Helpless, angry, anxious, confused

Tell us about life today?

My father will likely die as a result of his injuries. It is very difficult for the family, because he was otherwise healthy and extremely active -- particularly mentally.

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

Understand that the CAT Scan and MRI are completely different in their ability to give you information. My dad's CT scan results were encouraging, but the MRI (which was able to see more detail) was devastating. Also, each brain injury is different. There is a big difference between localized damage (such as a stroke, or gunshot wound) and diffuse axonal injury. Others will try to encourage you with their personal stories about family who recovered from completely different types of injuries, but it is important to understand your loved one's injury and prognosis first and foremost and to have reasonable hope. Several times we were unrealistic about dad's chance of recovery, and it would have helped to be able to communicate the reality to others sooner rather than later.