Repetition was the critical ingredient in everything Alan practiced in rehab from putting on clothes to standing on a balance board before learning to walk. In no area was repetition more important than getting a grip on who he was. I had a mental image of the process of taking in, imprinting, and storing the information. I saw Alan kneeling by a pond, using his hands to scoop up water filled with darting silver minnows. As he raised his cupped hands to a pail, the minnows slid between his fingers on rivulets of water before his hands could reach the pail. He might scoop up ten minnows, but only two made it safely into the pail.

On Monday, Alan might remember what city we lived in. On Wednesday, he knew I was his wife, but our house had faded away.

Customized tools

In a stroke of good fortune, we had one custom-made tool that filled in so many blanks. Years earlier, Alan's sister Barbara has a videography business producing interviews with elders as they told their life story. Eight years before the brain injury, Alan had recorded his biography with Barbara. I would never have known so much about his childhood or formative experiences without the videotape.

We played the tape in speech-language pathology sessions, and in the evening when family visited. On the video, Alan spoke passionately about his life-long fascination with science, and the nuances of his academic career. He spoke with raw emotion about his parent's divorce when he was twelve. Watching the video, Alan cried as listened to himself describing the loss of his first wife, Marge, to cancer when she was thirty-five.

Alan never tired of replaying his life's journey. He even started to recount specific information to his doctors on morning rounds.
"I went to Camp Martin Johnson," he said. "I learned to swim. I think I like boats."

Memories beyond control

I had no problem deciding which basic facts to teach Alan. But the emotion-laden changes and events were harder to pace. Alan had huge, catastrophic reactions to remembering painful losses, and I wanted to spare him until he could better understand and put the event in perspective. When he asked me questions about himself, I wondered what to leave out even more than what to include. Sometimes his spontaneous memories bumped in ahead of my deliberately timed deposits to his memory bank.

Here's a prime example. The brain injury wiped out Alan's sense of chronological time. To help him grasp events over time, I drew a series of time lines on sheets of paper. Each time period on a separate sheet. One day, as we looked at the timeline of our marriage, Alan noticed that there was a ten year gap between Marge's death and our marriage.
"Whoa! I must have had a lot of girlfriends," he said. "What were their names, what happened to them?"
By this time I'd been living by his bedside in various hospitals for months. I had zero tolerance for tackling this topic.
"How should I know?" I snapped. They were all mean and ugly so you married me. I'm the only you need to know about now!"

But it wasn't over. One morning Alan woke up screaming, "I had another wife; I had another wife." The story I had decided not to tell him had come back. Indeed, Alan had a second, brief marriage a few years after Marge died. It ended in a bitter divorce. Now she was back. This information terrified and thrilled Alan.

For days he asked every nurse, "Did I tell you I had another wife? How many wives am I going to remember?"

Can you imagine not knowing what stranger-than-fiction memories might broadside you next? Placing myself in Alan's shoes, the possibility made me shudder.

We had a ritual of curling up on the bed together at the end of Alan's therapy sessions. One lazy afternoon, Alan awoke from a nap and smiled cherubically at me.
"I had a dream that they poured all new memory into me," he said.
"Wouldn't it be great if they could do that?" I said. "But you'll get your memory back piece by piece.

Alan paid dearly for many of the memories that swept over him in waves. The memories that had a strong emotional charge were the hardest. One morning he awoke crying hysterically, "My mother, my mother died. She died," he wailed inconsolably. The intensity of emotion accompanying the memory made onlookers think she died yesterday, instead of fifteen years earlier. This happened several times.

I felt helpless to prevent Alan's pain. It helped me a bit to recognize that the emotional memories were the ones that stayed. The advantage was that we could talk about his relationships with his mother and Marge in their fullness. Gradually, his pain diminished.

At the same time that Alan was learning who he used to be, he was trying to grasp who he was now-and not liking the answers. As the ability to remember gets stronger, self-awareness dawns and leads to problems and progress on its own. In my next post, I'll tell you how Alan's awareness led to profound depression and, later, progress in treatment. In future posts, I get into much more about memory strategies to improve functioning.

Tips for caregivers.

1. Record your memories now! We don't have to wait until we're old to record our story. Share your lessons, truths, and humor early. Capture the memories, events, and relationships that made you who you are at any age. Consider writing for your family, filming a visual biography, or making an audio recording. Write your memoir even if you're not famous. Be famous to yourself! Any format for getting what matters most to you into concrete form will be great.

2. Don't expect a lot of early memory return to make sense or be logical. Stay focused on what is most important to relearn, and let the rest go.

3. Try not to take on the survivor's intense emotions. You can offer comfort, short explanations, and then redirect her attention to an activity. Ask the staff for suggestions.

4. Be patient with repetition.

5. Each brain heals at its own rate, and it may seem that not much is happening inside. In fact, changes are taking place on many levels, including memory. Hold on to hope. Keep talking. Offer love and reassurance.

6. Ask the treatment team the best way to present information. You can use stories, photographs, videos, music, and written notes. It's important not to overwhelm the survivor with the amount of content. Less is best.

7. Try not to personalize what the survivor says or remembers. Alan always sensed that I was his wife, but it took months before he called me by the correct name. Not remembering is not a rejection. It's part of a complicated cognitive process.