Her Beautiful Brain Read online

  A few minutes later, Caroline opened the door and told us that she and Mom would be OK, that it would be best if Rus and I left now and we met in the morning after breakfast, as planned, for the drive to Cap Rouge.

  We couldn’t say it out loud, but I knew Caroline and I were both thinking the same thing: we had never, ever, seen Mom like this. This was not the Woman of Steel we knew. This was not the generous, champagne-buying Mom we’d known two hours ago. Even after Ron died, when Caroline was only twelve, Mom kept it together, at least in front of the kids. And whatever it was that made her snap at the Jacmelienne, it seemed to be more than our political discussion. It was something else. Something about feeling left out, but not in the emotional way that the words “left out” usually imply.

  It was as if her brain felt left out. Left behind. And in 1987, that was not a feeling she was used to.

  Rus and I drove slowly back to the Cyvadier. The night was moonless, pitch black, and yet there were people walking all along the highway, carrying baskets on their heads, going home, we supposed, but where were their homes in this darkness? They blinked in the glare of our headlights. The children we saw were too sleepy to smile or wave. We didn’t talk about Mom. We had to concentrate on watching for the turnoff to the Cyvadier.

  What a relief it was, to finally get in bed and curl up in Rus’s arms and hear him tell me everything would be OK. That my mom had just had a long, strange couple of days and she was wiped out. I was too tired to do anything but nod my head and believe him and gratefully fall asleep.

  The next morning, we picked Mom and Caroline up and headed up to Cap Rouge. None of us said anything about the evening at the Jacmelienne. We talked instead about how dark it was at night but how early and quickly the sun rose, how good our breakfast coffee was, how truly red these cliffs were, what we hoped to film that day.

  The town of Cap Rouge was a cluster of huts on either side of a dusty path not quite wide enough to call a road. It was market day. The vendors set their baskets on the ground along the central path. Caroline chatted with them, buying rice and beans and peanuts and bananas. Rus and I followed with the camera. Mom was busy taking pictures too and she was fine about not being part of our TV story, which we had all agreed would be too hard to explain to the news director. Later, we filmed Caroline meeting with the local people who would be her partners in the new health education program. Then we went back to her house and interviewed her at her tiny kitchen table.

  In the afternoon, Caroline’s neighbors came by to say hello. Everyone was so excited to meet us they could barely stand it. They were especially eager to meet Mom—imagine, the young Blanc Caroline’s mother visiting all the way from Seattle, what an honor! Mom smiled and laughed, enjoying the attention, putting her arms around us and urging Caroline to tell everyone that Rus and I were engaged. The neighbors brought over extra chairs for us so we could eat our rice and beans sitting down. It was a long day and a good day. We were all ready for bed by the time we drove back down to Jacmel.

  The morning after that, Rus and I said good-bye and drove back to Port-au-Prince and flew home. Meanwhile, Caroline and Mom checked into the Cyvadier for a few days of R&R, which turned out not to be so restful: Mom slipped on the tile around the pool and had to limp through the rest of her trip.

  Two decades later, I found a small bundle of Caroline’s Peace Corps letters in a box in my closet.

  One of them began, “Dear Ann, —Mom’s last night.”

  “She and I had a good evening together, actually, Friday after you left,” Caroline wrote. “She was talking about worrying about blanking out in front of her class on very common words. And her behavior over drinks at the Jacmelienne worried her too, she said. It freaked her out. I told her I was relieved to hear her say that because I was concerned too and worried that she seemed to dismiss it so easily. She said she was just embarrassed and didn’t know how to bring it up. I was indeed relieved.”

  One of the very worst things about Alzheimer’s disease is that you really don’t know when it starts, let alone how or why. And of course we still don’t with Mom. But I had long forgotten getting that letter. And Caroline had forgotten writing it.

  We didn’t remember it because in 1987, our mom was still what we thought of as herself: youthful, intrepid, willing to jump on a plane to Haiti. Not so good about remembering the details of our lives, but always so proud of us. Of course we could not erase the bad night in Jacmel. But for Rus and me, the afternoon of that day, saying Yes and Je veux at the Cyvadier, was such a sublime and defining moment of our lives that we couldn’t dwell on what went wrong that evening. The story to tell when we got home was that we were engaged: crazy, but true!

  Alzheimer’s disease was the last thing on our minds.

  Now, I stare at that line—“blanking out in front of the class on very common words”—and I am stunned to think that it started that long ago. Back when I was so selfish that all I could see, when I saw Mom, was the person who, without even trying, was making me feel guilty when all I wanted to feel was in love.

  In Haiti, unbeknownst to us, Mom was walking into her own fourth world. A place where no amount of intervention could save her. An eroding landscape that would, in less than twenty years, scrub her dry.

  Tonight, Tonight

  Please do me a favor,” Mom asked me.

  How often I’ve wondered what it was like to be her. To struggle to think, the way people with pneumonia struggle to breathe.

  “OK, a favor. I’ll try,” I said, squinting as the low sun flared.

  It was December 2001. After two years at the Lakeview Retirement Community, we had just moved her to the Fairview Terrace, a new facility that specialized in Alzheimer’s care. Mom and I were standing in a square of winter sun in her new snowy-white living space: one room with one window, one twin bed, one dresser and one chair. Her hair was fluffy-clean and haloed in the slanting light with flyaways, like a baby’s; her clothes were unspotted. She looked better than she had in weeks. But her eyes were sheepish and pleading; they were the eyes of a little girl trying to charm her way out of big trouble.

  She took a breath, and blurted, “Please—don’t tell my family about this.”

  What she said made perfect sense—to her. In that moment, in her pleading eyes, I was not me, Ann, her third child, her firstborn of her second marriage, the mother of two of her fourteen grandkids. I was a stranger, sternly telling her that she was in trouble, that the woman she’d pushed out of bed the night before had required stitches and her family was livid and there would be consequences.

  I hesitated, as I had taught myself to do with Mom, taking the two seconds I needed to make the decision. Go along with this one. Just for the moment. She’s overwhelmed. Don’t take it personally.

  “OK,” I said in a formal, I’m-a-stranger voice, and then, “Let’s sit down for a minute.”

  But I wasn’t a stranger. I was her daughter. And this was the first time she had ever done this: talked to me as if she didn’t know me. It stunned me, it stung, the way it stings when someone you love tells you they don’t love you anymore.

  “I don’t know what happened,” she said. “I can’t remember.”

  “I know, Mom. I know.”

  We sat down on the bed and I put my arm around her and that triggered something, because I could tell from the way her shoulder nested into me that I was her daughter again.

  “It’s that damned—thing I’ve got, that—”

  “Alzheimer’s.”

  “Yes. Alzheimer’s.”

  Before our daughter was born, one of the gifts we received was a baby bath, featuring a baby-shaped, baby-sized sponge cushion that fit neatly into the white plastic bathtub. What a brilliant idea, I remember thinking. Our baby won’t have to slip and slide on hard plastic; she or he (we still didn’t know) will recline on this nice yellow sponge and gurgle with bath-time joy.

  But after spending our first night at home with Claire, not sleeping more than five
minutes at a time because we felt compelled to watch her, terrified, to make sure she kept breathing, Rus and I looked at the baby bath in the morning as if it were a complicated machine that we had no idea how to operate and we both had the same thought: call Arlene.

  Like many pregnant women, I had vowed that I would declare my independence as a mother, not let my mom take over, I would do it my way. But that was before twenty hours of labor and three nights without sleep. My brain felt like used cheesecloth. It was hard enough to figure out breast feeding, let alone baby bathing. I needed Mom: her wisdom, her experience, her well-rested brain.

  In the video Rus shot of Claire’s first bath, Mom is smiling and chattering and holding eight pounds of wet, squalling newborn Claire with one hand while she turns on the kitchen faucet and checks the water temperature with the other. Claire is hollering loudly through the whole experience, but as soon as it’s over, Mom wraps her in her hooded baby towel and holds her up to her shoulder, soothing her, cooing to her, and in seconds Claire is resting calmly in her arms, staring at me and Rus with a look that says, “Why can’t you be more like her?” In the background, you can see me lurking like a zombie in my pink robe and huge glasses, looking like a just-risen pan of cinnamon rolls, puffy and doughy and dark-circled.

  Now, Mom and I are sitting side by side on a twin bed in a room barely bigger than that tiny apartment kitchen. Claire is twelve. She has a little brother, Nick. They have happy memories of nights at Grandma’s house, always eating exactly the same meal—Mom’s chewy beef stew, with Rocky Road ice cream for dessert—and watching the same movie—West Side Story, always ejected before the bloodshed starts. But those overnights ended a long time ago. Now, Mom’s life has shrunk to one room. She can’t keep her own stash of ice cream anymore, or watch her own movies on her own TV.

  A healthy brain resembles a big, expensive sponge from a fancy bath store, plump and absorbent and ready to cleanse you in a constant, rejuvenating waterfall of new thoughts, emotions, reflexes, actions, prayers, insights. A brain afflicted with Alzheimer’s disease gradually starts to look like the old, smelly, dried-up sponge that you keep trying to use until you come to your senses and demote it from the kitchen sink to the basement sink, where you leave it to shrivel for months before someone finally throws it away. You can’t do much with a sponge like that. It’s stiff and dry and water runs right off of it.

  During the West Side Story years, Claire would come home after a night at Grandma’s, put on what she called her Maria nightgown, pull the step stool from the kitchen into the middle of the living room, climb up the two steps and sing down to Tony from her fire escape. “Tonight, tonight,” she would serenade with feeling, “won’t be just any night. Tonight there will be no morning star …”

  When I was a little girl, Mom belted out “Tonight” and “I Feel Pretty” while she did the laundry, which was often. There were eight of us. There were mountains of diapers and sheets and T-shirts and tights and my brother’s football gear and Dad’s tennis whites. Mom had never been to New York in her life. But the songs lifted her out of our dank, laundry-filled Seattle basement and onto the fire escapes of Manhattan, where romance and hope blossomed briefly. “Oh moon, go bright, and make this endless day endless night … ”

  What Claire and I learned from Mom and West Side Story was this: Don’t let the piles of laundry stop you. There is passion waiting on the fire escape and in the back of the dress shop and on the rooftops and at the dance in the gym. If you’re stuck, for now, with the laundry, or with a step stool in your living room, then let your imagination take you there.

  And so I have to wonder, because someday I could be Mom: where does your imagination take you when plaques and tangles are blocking the way?

  Someday I could be Mom, that’s a place I try not to go too often, not on purpose. I tell myself that it could have been all those toxins in Butte, Montana that triggered Alzheimer’s disease in Mom, or maybe a combination of toxins and stress: losing two husbands to divorce and one to death. I remind myself that we don’t have a strong family history of Alzheimer’s. But the fear is always there, always, and it was there even before we knew that what was wrong with Mom was Alzheimer’s, back when Claire and Nick were toddlers and we thought maybe she was still distracted by grief over the death of Ron, her third husband, or maybe she was just plain lonely, even though she claimed to be loving her empty nest.

  Back then, what I feared was that someday I would allow my life to become what Mom was allowing hers to become: a life of puttering.

  “What’d you do today, Mom?” I’d ask.

  “Oh, nothing much. Just puttered around.”

  Puttering meant a little cleaning, a little weeding, a little laundry; it meant the crossword, Time magazine, TV shows she’d never previously had time to watch, like Columbo. She loved Peter Falk in his rumpled raincoat. No harm in all that. She had quit teaching the year Nick was born, a year before her scheduled retirement, because those blank-outs in front of the class that began some time before she went to Haiti had started happening so often that she’d lost her confidence. Don’t be so judgmental, I would scold myself. Nothing wrong with taking it easy after all those years in the classroom. But she wasn’t reading books. She was painting less and less. She said she wanted to write her story, but her boxy new Mac was gathering dust. All she did was putter.

  What drama there was in her life was caused by her own distraction: She would forget to grab a house key when she went out for a walk and find herself locked out, again. She would forget where she parked the car when she went downtown to shop and it would be towed. Again.

  It was exactly during the years when I was busy trying to figure out how to juggle being a mother with being some kind of working creative person that Mom, the former powerhouse of working motherhood, began to change before my eyes into a distracted putterer. I didn’t want to think too hard about why this was happening. My days were full, so I had the convenient excuse of little time to dwell on how Mom was changing. And the circular sameness of her activities actually made her a great refuge for my young children: she wasn’t about to try anything ambitious or new; she was going to make beef stew and then curl up with them and watch West Side Story, but not the sad part.

  And if I did start dwelling too much on how she was changing, I might have to say something and that would just open a can of worms: “Mom, I think you’re depressed.” “Mom, have you considered volunteering?”

  I actually tried that line once and she looked at me like I was nuts. “I spent all those years teaching and now you think I should volunteer?”

  Before Mom’s Alzheimer’s had a name, what I feared when I looked at her life was loneliness and lack of purpose. If I wind up alone like Mom, I would vow, I will work, I will write, I will volunteer, I will make sure my life has meaning.

  After we learned that she had Alzheimer’s disease and that she’d probably had it for years, I was ashamed of the way I had judged her so arrogantly, especially as the small indignities started to pile up: She was dropped from the tennis roster at the Tennis Club. She was dropped from her bridge group. On her last trip to Europe, she had decided to take a walk while the rest of her tour group was resting and she got lost in Lisbon and could not remember the name of her hotel. She walked into another hotel and a good-hearted desk clerk helped her figure it out and put her in a taxi, but for her it was a new low, an embarrassing turning point.

  Back then, I was too busy trying to make her feel better to dwell on how awful it must have been. Now, I can dwell all I want.

  I can picture her in her tennis outfit, sitting at the table in her bright yellow kitchen with its heart-stopping view of Mount Rainier, calling the club on a Tuesday morning to get her Ladies’ Day tennis time.

  “Sorry, Arlene, you’re not on the list.”

  And then what did they say?

  Was it, “We’ve had complaints that you can’t stay in the game anymore”? or, “We hear you’ve been diagnosed and wel
l, we know where that’s going”?

  After years of blaming the Tennis Club for all kinds of things, from my own social awkwardness to actually causing my parents’ divorce, now I had a whole new grievance to add to the list. But is that fair? What do you do when someone who is physically fit but whose brain is shot still wants to play tennis?

  I picture Mom hanging up the phone and staring out at the mountain and the water and trying to take this in: she has just been fired from playing tennis, a sport she has enjoyed for forty years.

  Maybe she got up and watered the plants or folded some laundry.

  Maybe I called to remind her that she had offered to babysit that night, so she got some stew meat out of the freezer and checked to make sure she had ice cream.

  Maybe I asked her if she was looking forward to playing tennis on such a nice day and she said, “Oh, I’m not going to play, my shoulder’s bothering me.”

  And I probably thought, Wow, now she’s even cutting out tennis. This Alzheimer’s diagnosis really has her down. If only I could get her to volunteer at the kids’ school.

  What an idiot I was. What did I know about Alzheimer’s? About getting through the days never knowing when your brain might hit a roadblock, never knowing when you might be newly humiliated?

  The tennis ball’s coming her way and she knows she’s supposed to raise her racket and return it but she—doesn’t. The message doesn’t get from her clogged-up brain down to her arm fast enough.

  Key, she says a dozen times, Grab the key on your way out the door. But then the door closes behind her, locked tight, and she realizes the key is still sitting on the table, right inside.

  Pine Street. Eighth and Pine. Picture the eight. Picture a pine tree. That’s where the car is. But after an hour of shopping, she can’t picture the car anywhere at all. She can’t even remember what kind of car she drives.

  “You’re so lucky, Arlene,” her friends would say. “You have so many children to help you out when you need it.”