One Saturday, (at Spaulding Rehabilitation Hospital’s Brain Injury Unit), Alan and I met with the team neuropsychologist, Dr. C., in his cramped office for another attempt at testing. Dr. C. began by asking Alan questions about himself: What is your name, what is your wife’s name, where do you live, what was your mother’s name? Alan started off with a confident air, but quickly dissolved into a state of mortified rage when he couldn’t answer any of the questions.
“Let me out of here! This is stupid. You don’t know what you’re doing!” he screamed.
He tried to stand up and take a swing at Dr. C., then swung his wheelchair around and rammed it into the closed door in an attempt to flee the scene. I froze, held my breath, and waited to see how Dr. C. would handle the situation.
Dr. C. turned Alan’s wheelchair until they sat face to face. In a firm voice he said, “Alan, if you leave this room you won’t get any better, and you’ll never know the answers. If you stay here, we can help you.”
Pointing at me, he continued, “This is your wife, Janet. She loves you and wants to help you.” My heart rate matched Alan’s, but he returned to the table and did his best to answer the questions. I tried to imagine how lost I would feel if I couldn’t call up my name or address. Like so much about brain injury, it was hard to fathom.
I was horrified as I listened to all that Alan no longer knew. Where did all his knowledge disappear to? How could he survive?
The neuropsych assessment, done over several days, showed that Alan had a range of impairments from damage to many parts of his brain. Language was a major problem. His ability to make, recognize, and say words was seriously limited, although he tried valiantly to generate the right word. Alan didn’t know the names of common objects when asked what they were,
He made up words frequently, and mispronounced the sounds of letters. He struggled to find the words he needed (expressive aphasia) to express himself and couldn’t communicate effectively beyond one simple sentence. This was an enormous source of frustration for Alan. And for those of us who desperately wanted to communicate with him.
Alan could not read a sentence. Nor could he write a sentence or copy a line of text. Occasionally, he could print a few letters.
The problem that complicated all the others was memory impairment. Every type of memory would be affected. The extent of amnesia is one indication of severity of brain injury, and Alan was classified as having a severe brain injury. Additional tests showed that Alan could not form new memories. I couldn’t understand how he could possibly relearn information and skills if he couldn’t form memories or benefit from experiences.
In spite of all these impairments, Alan had enough self-awareness and an unusual ability to share flashes of brilliant description about his inner experiences. “I’m in a world where everything is different. I’m scared, I’m scared …” Or, “I’m in a boat months and months away from my real life.” His next sentences would be a mix of real and made-up words, but we could respond to the emotions.
The morning began with Heather, Alan’s occupational therapist, teaching him the basic routine of “activities of daily living,” known as ADLs. These are the routines we do every day such as using silverware to eat a meal, taking a shower, shaving, and putting clothes on the right places in the right order. Her evaluation showed that Alan had lost the ability to plan and perform motor tasks in a logical order (apraxia). Apraxia came through as he tried to dress. He couldn’t sequence his clothes at all, and often tried to put his tee shirt on over his legs as pants. I had to stack his clothes in a pile on the bed with the items he put on first on the top.
He didn’t remember how to do anything without being shown many times. None of the standard tools were familiar or intuitive. I flinched when he tried to brush his teeth with his disposable razor and drank soap from the dispenser when thirsty.
Janet M. Cromer, RN, MA, LMHC is a psychiatric RN, licensed psychotherapist, educator, and freelance healthcare writer. Janet's proudest accomplishment was sharing life with Alan for 20 years. Janet has been active in the brain injury community since 1998 as a support group facilitator, advocate, guest speaker, and advisory board member. Janet speaks widely at brain injury and family caregiver conferences, hospitals, support groups, book clubs, and community events. She is committed to improving the lives of brain injury survivors, and the emotional and physical health of their family caregivers. The American Medical Writers Association/NE Chapter awarded Janet a Solimene Award for Excellence in Medical Writing in 2006 and 2008. A native of Boston, MA, Janet now lives in Bethesda, MD. Please contact Janet at www.janetcromer.com