Caregiver Story #14


Summary – the cause – the injury – today’s quality of life?

This is hard to describe. I work in cognitive rehabilitation in brain injury and every story is different. I’ve known people who had been in car accidents, organic illnesses, failed suicide attempts, strokes, heart attacks, falls, and one gentleman who had been beaten while in prision; he was schizphrenic prior to his injury but back then, he was imprisioned, not institutionalized. There is also a wide range of injury’s, in both location and impact on the person.

One man I knew had a teenage son and he believed he was a senior in highschool, often asking when he was going back to school. He was 38 when I knew him. Quality of life is a preception difficult to descirbe. I’ve heard some say they are not living their lives but rather existing. I’ve heard some say they are living the best they can and others are just happy to be alive.

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

I had never thought about brain injury. I had never considered it; few ever do. I was lucky, however, that I did not become aware of the silent epidemic because a family member or close friend sustained an injury. I learned about this because of a job I applied for and got. I couldn’t understand why one man I knew asked me the same question 16 times throughout the 12 hours shift I worked with him. I did not understand why their relatives were so angry with me when their loved one was not walking or eating normally yet. I didn’t understand how the survivors remained in this place that I worked for decades after their injuries. I learned to understand these things from getting to know the wonderful people I worked with who had survived brain injuries. They had so much to teach me. They still do.

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

For some after injury, life meant celebrating the first time they used the bathroom independently or feeding themselves. Life after injury for many was a time lapse in memory and consciousness. Some woke from coma and discovered they were not as able as they once were. Some had surgery before they even knew they had been in some sort of accident. Opening skulls and throats to help relieve pressure and maintain breathing.

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

Many people who survived injury were put into mental hospitals because no one else knew what to do with new behaviors, emotions, and even personalities of their once beloeved friends and family. A lot of doubt fills those hospital beds. A lot of loss roams the hallways and fear makes it impossible to change.

Tell us about the time in rehabilitation?

Rehabilitation is where I come in. I do not see the accident scenes. I do not meet the on-call surgeon who opened my clients head. I do not always meet the family. I’ve worked with some who’s families are at every rehab meeting and visit more than 3 times a week. I’ve worked with some who have not heard from their families in several years. I’ve worked with some whose family abandoned them in a residential facility and continue about their lives.

Tell us about coming home!

Some do not get to go home. Some go home and come back either because it was too hard, too overwhelming or they sustain yet another injury. I try not to use the word home unless the client does first. I’ve offended my share of people by referring to the residential buildings as homes.

“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”

impressed, changed, sad, hurt, hopeful

Tell us about life today?

Life today for many has turned over a new leaf and still for others it is the beginning of a very long journey.

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

The people I work(ed) with are the greatest treasures in my life. I’ve learned about family, friendship, support, effort, and have a deeper appreciation than I ever thought possible. I’ve learned to go at their pace, work on their goals, and support them in every way I can. When I can’t I find someone who can. Open ears are very important when working in this field and open hearts are just as important. The longer I work with survivors of brain injury the less I ever want to leave.

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