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You've spent years becoming the one-of-a-kind person you are today. But what if a severe brain injury wiped away all traces of that person? Years of fine tuning your identity, personality, memories, skills, and flaws would be gone. A lifetime of accumulated knowledge vaporized in an instant. How would you even begin to reconstruct obliterated memories of the most essential parts of your life? That retrieval and rebooting process is just the beginning of the painstaking journey to unite the essential shards of who you've been with the emerging strangeness of who you are now.
After my husband Alan sustained a massive heart attack and cardiac arrest, his brain and other vital organs were starved of oxygen for almost an hour. Alan spent one month in the intensive care unit in precarious condition before stabilizing enough to transfer to Spaulding Rehabilitation Hospital in Boston, MA. He and I participated in intensive inpatient brain injury rehabilitation for three months.
Evaluating the damage
Rehab always starts with a systematic evaluation by all the team members- neurologists and physiatrists (MD rehab specialists), nurses, neuropsychologists, speech-language pathologists (SLP), occupational therapists (OT), and physical therapists (PT). Brain injury affects the whole person: physical, emotional, cognitive, spiritual, and behavioral areas. The evaluation showed that Alan, a physics professor and prolific author, had damage to many parts of his brain.
He had "profound cognitive-linguistic impairments" characterized by markedly impaired memory, orientation, and attention deficits. Language was a major problem. His ability to make, recognize, and say words was very impaired. He didn't know the names for common objects (anomia). He had fluent aphasia, which meant he had difficulty understanding spoken or written words, yet he talked endlessly. However, his speech was usually made up of malformed or substitute words of his own creation. Often, we couldn't understand what his pressured gibberish meant. When he spoke, he pushed his face right up into mine and pierced me with his beseeching blue eyes. I searched his dramatic facial expressions and matched my response to the emotion I found.
Alan couldn't recite the alphabet or recognize numbers or letters. He could not read or write. He was unable to do the high level executive functions we take for granted: organize his thoughts, problem-solve, reason and make sound judgments.
Alan could barely stand, balance or walk more than a few steps. He didn't know how to eat with silverware, put his clothes on in the right order, or tell time.
Memory impairment complicated all the other problems. Lack of oxygen caused permanent damage to the most fragile areas that make and store memories- the amygdala andip hippocampus. Every type of memory was affected. Alan had amnesia for everything that had happened to him after the heart attack (anterograde amnesia). He also lost many years of his life preceding the cardiac arrest (retrograde amnesia). He could neither access his long-term memories, nor remember something that happened ten minutes ago. Alan's memory now began and ended with his early years. And that was only with lots of family storytelling and prompting.
I understood the explanations for Alan's memory loss, but I couldn't quite believe he'd lost such big, important memories about us. Like how we met, and the first time we said, "I love you. Or why he married me instead of another woman. How could you lose those memories?
Additional tests showed that Alan might not be able to 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.
The evaluation reports are spiked with an overdose of "severe ..." and "very impaired..." I dutifully scribbled all the test reports in my notebook, but I became numb from grieving the husband I had lost, and the self that Alan had lost. The cognitive and memory impairments meant that Alan had lost his identity. He was no longer the same husband, brother, uncle, professor, writer, jogger, or community member he'd always been. I believed what I heard and saw, but it was all still surreal, like a nightmare I couldn't find my way out of.
I boiled down the reports to a brutal summary to inflict on anyone who asked.
I said, "Alan lost his abilities to read, write, walk, talk, think, and remember. He will have to learn to do everything all over again. And all at the same time."
That statement covered the bases but, unless you've spent time in a rehab hospital, it's incomprehensible to imagine.
In spite of all these impairments, Alan occasionally had enough self-awareness to share flashes of brilliant description about his inner experiences.
"I'm in a world where everything is different," he said. "I'm scared, I'm scared."
Or, "I'm in a boat months and months away from my real life."
Then his words would go back to his own language.
Hello, your name is...
So how do you begin to reacquaint a person with himself? In rehab, you start at the beginning. All the patients with brain injuries were given a Memory Book as a "this is your life" primer. Alan's red loose-leaf binder held pages with a single line of information such as "Your name is Alan Cromer." The next page read, "I am a physics professor." There was a photo of me labeled "My wife Janet" on another page. Then a photo of our home with the cherry trees in bloom and our address.
This was a tough textbook for Alan. Day after day we drilled on his full name, my name, and the name of his nephew Tom, with whom Alan shared a father-son relationship. I could hear Alan's roommate Fred reciting the contents of his memory book on the other side of the curtain. Fred had a severe TBI, but he could recall his name. I sulked about Fred's faster progress.
"How pathetic is this?" I mumbled. "I'm jealous of a guy who knows his wife's name 40% of the time. Competition can be tough and ungratifying on a brain injury unit.
When Alan's sister, Barbara, visited from Chicago she told him stories about their early years and family life. Alan listened with rapt attention, and gradually began to hold on to a few facts. I told him stories about our marriage and life together. How we met at the Sunday Brunch Club, a group for singles over age thirty. About the run-down house he bought and started renovating a year before we met. About our marriage of eleven years. They were like bedtime stories, only true. The same stories day after day. Sometimes Alan was enchanted by the stories, at other times he became distressed that he didn't recall basic facts about his own life.
One night Alan hung his head and said, "You have to have memories for life. What will happen to me?"
"You'll get your memories back." I replied. "And now we have another chance to make new memories." The staff had told me that some memories might return spontaneously, but other information would have to be learned anew.
The responsibility for restoring another person's memory and identity is daunting, strange, and even morally complex. What can you do if you're the caregiver? PLease see page 2.
Caregiver tips during early rehab
Believe what you see and hear. You can hope for, and work toward improvement, but join with the survivor where he is today.
Start getting used to repeating information dozens or even hundreds of times. Repetition is the key to learning.
Relate to the survivor as the person he is today, not who you want him to be. He will probably continue to change, and your communication will change again.
Touch is the most elemental form of communication. Hold hands, stroke his arm, rub his feet. Touch gets through to offer love and reassurance even when words do not.
Have a safe place to release your emotions away from the survivor. When you're with him, try to be a non-anxious presence, even if you have to fake it. Talk to a confidant or mental health professional familiar with brain injury.
Choose a few memories you treasure and know the survivor valued. Always talk about what is in his best interest, not your agenda. Speak in short sentences with pauses. Curb the urge to ask, "You remember that, don't you?"
In my next post I'll tell you what I decided to tell Alan about himself, And what I held back. And how that worked out...or backfired.
