Her Beautiful Brain

by Ann Hedreen

  There are so many kinds of loneliness. There’s the eerie isolation of being packed into a subway or walking down a crowded street where no one dares to make eye contact. Or the pressing in of the walls when you’re alone in a new town and have no one to call. But I’ve never felt as lonely in all my life as I did when I visited my mother at Northern House. To sit across the table from the person who was the very first person I loved, the very first person to love me; to try with all my might to will her eyes to meet mine and then to have to give up, to accept her eyes not seeing me—and then to have one of her well-meaning care-givers comment on how pretty Arlene looks today, her lovely skin, her clean white hair—I wanted to shout, Who cares? She’s gone! Can’t you see that this is not Arlene, this is an old-woman rag doll who we are all pretending is still a living person? Can’t you see that the reason I have to leave the very minute the clock strikes the hour is not that I have so much work to do, which is what I always say, but because I have to get in my car and drive down the street until I’m out of your sight and then I can stop and let out this sob I’ve been strangling on for the last half hour?

  This went on for four years.

  At each visit, there was another downhill step, another bit of bad news to report: She won’t chew her food. We have to put her in a diaper. She won’t stand up straight. She won’t stand up at all. Four years: from walking and muttering to limp and mute in a wheelchair, all connections between brain and muscles severed.

  Lost and gone forever, dreadful sorry, Clementine.

  And during those four years, the visits to Mom were sandwiched between all the rest of my life, just as they were for my sisters and for my brother when he visited from New Jersey. “Sandwiched”: it sounds so easy, a simple matter of tucking the ham in between the bread and the lettuce. But it never was. It was never easy to tuck a known mood-wrecker into the day; to know that I was going to get up from my desk, get in my car and drive into a wall, again, and then recover, again, like the world’s most resilient crash test dummy. It was never easy to do it, not knowing how many months or years I was going to keep doing it, which meant I couldn’t have a big breakdown every time, I just couldn’t; it wouldn’t be fair to my husband or children or friends or workmates.

  So I learned what I needed to do to smother the sadness and get on with the day. I stopped for the sob down the block from Northern House, and then, if I had time, I did some transitional something between the visit with Mom and having to function in the world of my daily life. Sometimes, I went to Third Place Books, over the hill from Northern House. If I felt too wrecked to browse books, I would browse magazines in their café over a bowl of soup, a practice the store graciously allowed. If I felt like I should do something that could be construed as useful, I stopped at Trader Joe’s or Costco and loaded up on groceries. There were a few friends I could walk with or have lunch with immediately after visiting Mom and I could either talk about her or not.

  But there were many people I felt I could not see or talk to right after seeing her. My dad and stepmom, for example. They couldn’t help being healthy and athletic and youthful; it was irrational of me to think of their good fortune as somehow “unfair.” But here they were, flying back and forth to Phoenix for their tennis and golf and sunshine while Mom lived out her shredded life at Northern House. And here I was, that old divorce scar tissue flaming up whenever Dad asked, “How’s Arlene?” I knew it made no sense. And yet it was true.

  Maybe all grave illnesses do this to families: bring up old hurts, inflame old wounds. But Alzheimer’s disease has its own particularly insidious torture methods. One is the open-endedness of it. There is no three month, six month, couple-of-years-if-you’re-lucky kind of diagnosis like you might get with cancer. It could be a year or a decade. Or two decades. Mom’s body was strong. So I couldn’t afford not to tamp down the sadness after my visits. I couldn’t allow myself to lash out at Dad for no currently relevant reason. I couldn’t ask for sympathy or breaks from colleagues or clients or friends, because what if I found myself needing even more sympathy or bigger breaks down the road?

  I had to conserve emotional energy.

  Another of Alzheimer’s tortures is that once you’ve passed a certain point, you can no longer talk about it with the person who has it. There is no crying together about the awfulness of fate; there are no goodbyes. If Mom was raging against her illness somewhere deep inside, we didn’t know it. She couldn’t tell us.

  I wondered often, at Northern House, if she was. Raging. If her pacing and muttering and later, in the wheelchair, her sudden bursts of incoherent agitation were her ways of trying to say, Why? Why can’t you get me out of here, out of this prison? Why can’t someone or something or some drug get in here and clear a path through my brain?

  She couldn’t tell us whether she was tired or not, but she always looked exhausted. Whipped, like Montana at the end of a parched summer. Like just existing in a world she could no longer make sense of was harder than anything she had ever done. Alzheimer’s disease, or at least my mom’s Alzheimer’s disease, is not some peaceful, slow fade-out; it’s a futile struggle against quicksand, an instant of suffocating panic stretched out over years and years and years.

  But it’s not like I could go around talking about this, especially when Mom was still alive. No one wants to hear these kinds of things about an illness that afflicts five million Americans and twenty-six million people worldwide. No one wants to imagine that much suffocating panic going on all over our planet.

  So, especially right after seeing Mom, I tried to avoid people who were likely to ask well-meaning questions like, “How’s your mom doing?” I tried to stay very far away from the people who I knew would give me that look that said, “I’m asking how your mom is doing but I am hoping your answer will be really short because I’d rather talk about rabies or herpes or toxic slime than Alzheimer’s disease,” or the people who I felt had already judged me for having put her in a “home” instead of caring for her in my own home, or the people who said things like, “Well, I certainly have my share of Alzheimer’s moments—you should have seen me looking for my keys this morning!”

  Sometimes after seeing Mom I had to just drive straight home and have a good cry on Rus’s shoulder. But I tried not to do it too often because I didn’t want him to worry that I was falling apart—especially considering that this might go on for years—and I also didn’t want to blow up his day.

  Rus and I had talked a few times about making a documentary film about Mom. My sisters were wary. I was wary. We tried shooting a little bit once, on her sixty-eighth birthday, in 1999. But when Rus asked, “Arlene, how old are you today?” and then filmed her trying to laugh off the fact that she had no idea—I felt—well, I felt something like what I felt when he and I took a day job with a tabloid TV show and staked out Kurt Cobain’s house after Cobain shot himself. I was ashamed. I wanted to shower. I called my sisters the next day and told them not to worry, we weren’t going to make a film about Mom.

  But the world was different in 2002. Mom was at Northern House, her ability to laugh at herself or anything lost and gone forever. And George Bush was president.

  When Bush announced his decision to restrict stem-cell research to a uselessly small pool of available stem cell lines, and then Laura Bush sanctimoniously opined that even though her father had Alzheimer’s disease, she was 100 percent behind her husband’s decision, some little switch flipped inside me. I wrote a guest editorial and sent it to the Seattle Post-Intelligencer.

  “Much is Lost to Alzheimer’s Disease” was the headline that the P-I put on it. “I see my Mom often, yet every time I see her, I miss her even more,” I wrote. “She is moving into the late stage of Alzheimer’s disease, a slow killer that has robbed me, my brothers and sisters, our children, and all the other people whose lives my mother’s life touched of the beautiful, intelligent woman we knew … You might say, ‘Get over it. It’s sad, but there are worse things. Seventy-one is hardly young
.’ Perhaps that’s what President Bush would say to me, as he explains why he can’t support the stem-cell research that could be crucial to our understanding of Alzheimer’s and other brain diseases.”

  Friends and family and total strangers responded warmly. It felt good. It felt like a way to un-smother the sadness without hurting anyone and, who knows, maybe even helping somehow: not Mom, but other people like me and my siblings who were logging their own lonely hours visiting someone they loved who no longer knew who they were. Or all the people who were caring fulltime for someone with Alzheimer’s disease. Or all the scientists working long hours in a research lab, with or without stem cells.

  I began to think again about the idea of making a documentary. Rus and I had been making more and more short films together, mostly for non-profits, and we had some new ideas about how we could go about it. We agreed that it would not be a visual chronicle of Mom’s downhill slide, that we would shoot very little footage of Mom with Alzheimer’s. Instead, we would use photos and old home movies and videos. We would make it personal but also journalistic; we would find scientists and doctors to interview. We would shoot it over one year, 2003, fitting it in with our other work. Because we owned all our own gear, we could do it without having to raise production money. We would just do everything ourselves. It would be a good change from working for clients; it would be good to write in my own voice. It would be a way to channel the sadness. To use it.

  I called the University of Washington’s Alzheimer’s Disease Research Center, full of questions, hoping to line up some interviews. The administrator surprised me with a question of her own.

  “Why don’t you volunteer for research?” she said. “As a control subject. It could be part of your film.”

  And so I found myself in a room at Seattle’s huge VA Hospital, where the Alzheimer’s Disease Research Center is located, taking all the memory tests I’d watched Mom flunk. The tests start with questions like, What day is it? Who is the president? and progress through tasks like spelling “world” backwards, listening to a paragraph and recalling details ten minutes later, repeating back sequences of numbers, remembering short lists of words, distinguishing the words for colors from the actual colors, going back to that paragraph and recalling it again, going back to those numbers and doing the sequences in reverse order. There were neurological tests too, in which I was tickled with feathers, tapped on the elbows and knees, peered at with a penlight in my eyes. And there were psychological questions: On a scale of one to ten, do you usually feel life is worth living?

  I was weighed and measured. I gave blood. I peed in a cup. My family tree was drawn, with special attention to anything that might be relevant: Grandma Cere’s Parkinson’s disease; Great Aunt Eine’s Alzheimer’s disease, which started in her seventies. I was approved for a lumbar puncture, more commonly known as a spinal tap, and a week later, I came back and curled up in a ball while two tablespoons of fluid were extracted from my spine with a long quivery needle: two tablespoons that would be turned into fifty droplet-sized samples for research. Rus filmed nearly all of it, from What day is it? right through the spinal tap. Later, we filmed interviews with four different doctors. Later still, we interviewed my sisters and our daughter.

  It didn’t make visiting Mom any easier. Most days, I still left with a sob stuck in my throat. But I was doing something and that was so much better than nothing, the big helpless Nothing I brought to Mom when I visited her, lost in her cavern in a canyon; Nothing served up with maybe a little pudding on a spoon and another verse of Clementine.

  Because we had to fit the work on the documentary into our work that paid the bills, we didn’t finish it until spring of 2004. And all through those many months, Mom continued to ebb away.

  I can’t remember exactly when she stopped walking; I do remember that it seemed sudden. That she went almost overnight from logging a dozen miles a day, up and down the hallway, to never moving again. That once her legs refused to walk, that was it, as if the walking center in her brain had just been sealed off. Like the vision center: she no longer seemed able to see anything flat—a photo, a painting in an art book. Or the language center: the words that spilled out of her now were bits of confetti, tiny scraps, as if the sealed-off language center had maybe one tiny opening, one mousehole-sized door—but alas, it also contained a shredder.

  Mom’s brain was being walled in brick-by-brick towards death, like Fortunato in Poe’s story, The Cask of the Amontillado: an allusion she, the English teacher, would have liked much better than poor old Clementine.

  In the earlier stages of Alzheimer’s disease, I didn’t think of her as dying. We all are, I know, whether we wear the label of an illness or not. But the fashion now is to say living with, not dying of, as in, “He is living with cancer,” or diabetes, or heart disease. When Mom was first diagnosed, it wasn’t hard to think of her as living with this condition called Alzheimer’s disease: though her memory was impaired, she was still very lively and alive. Even when she first moved into Northern House, pacing and grumbling, I did not think of her as dying. Not the way she walked the halls and polished off her meals. But as 2002 became 2003, 2004, 2005, as walking and talking and seeing all got bricked off and Mom seemed to be visibly shrinking, slumping ever further into her wheelchair, even her spine going slack—I began to feel this other presence in the room. Death. Parked quietly on the couch like a polite guest who is content to wait his turn to speak. No hurry. Please, go on.

  In the documentary film Stranded: I’ve Come from a Plane That Crashed on the Mountains, the sixteen survivors of the infamous 1972 plane crash high in the Andes speak eloquently about what it was like to live in close quarters with death for ten weeks. About how preferable death seemed, at the time, to being alive and stranded in an Andean valley full of nothing but snow. The infamy of their story comes from what they did to survive: they ate the frozen bodies of their friends. But in the interviews filmed thirty years later, they don’t use the word the rest of the world used, cannibalism, to describe what they did. They use words like communion. Sharing. What we had to do. They talk about portions laid out and consumed in silence. They never call what they ate meat or flesh; they call it food. They talk about how, when they look at the children they have raised because God allowed them to live, they feel their dead friends with them.

  They speak vividly about viewing the other side of death when an avalanche buried the plane two weeks after the crash and they all thought they were dying. How beautiful it was. How they longed to go there. How hard it was when their mouths found air and they realized their destiny was not to die yet.

  I watched Stranded a few nights ago and I wondered again what I always wonder when I think about Mom dying: did she get to see the light, the beauty?

  And as I listened to the stories of the sacred food, consumed solemnly with only one purpose—life—I thought of Mom’s last weeks. How all that was left for her was the swallowing of food: the powerful human urge to stay alive, past all sensible end points, all logic.

  It seemed she could still taste. Chocolate, always chocolate, would make her seek the spoon like a blind bird. She, who had fed so many babies, who for fifty years had urged children and grandchildren to eat and grow, now sought her own last spoonfuls of nourishment, her own last portions of life.

  Some people, nearing death, stop eating. Not Arlene.

  Not until a cold turned into pneumonia and she had to focus on trying to breathe.

  It was the first weekend of March, 2006. I was in Sarasota, Florida, showing our film, Quick Brown Fox: An Alzheimer’s Story—her film—at the United Nations Women’s Film Festival, called “Through Women’s Eyes.” I didn’t know yet about Mom’s cold, but I was so stuffed up I could barely breathe myself. I loaded up on decongestant for the screening and Q&A. This was not the first time I had shown the film but it felt new and so right to be in a women’s festival. It was something Mom would have loved: all these creative, dynamic women together in a brigh
t, coastal place, sharing their films and stories. Quick Brown Fox was received very warmly.

  But for two nights, I couldn’t sleep at all in Florida. I was staying in the lovely, bougainvillea-draped, stucco home of one of the festival organizers, and she was so kind and attentive and worried about my miserable cold; how could I tell her that I was also having the worst insomnia of my life? Puny scraps of sleep, scraps of dreams. Mom was in my dreams but that was not remarkable because she always was. Besides, all weekend long I’d been talking about Quick Brown Fox, which meant I’d been talking and thinking about her.

  At last I was driving across that long bridge over Tampa Bay towards the airport and home. I had just left the sunshine and turned into the climbing tunnel of the rental car garage when my phone rang. It was my sister Lisa, calling to tell me that Mom had pneumonia and when would I be home?

  I drove up to Northern House that night. My brother James and youngest sister, Caroline, were there. Kristie and Lisa had gone home but would be back the next day. Mom was in bed, lying on her side, breathing like an old mountain train. She had an oxygen pump and morphine. Her eyes were closed but she was perspiring, focused, in a state other than sleep.

  “You guys go,” I said. “I’ll stay a while.”

  Caroline and James urged me not to feel like I had to stay all night. The hospice nurse had said it could be several more days.

  I put some couch cushions down next to Mom’s bed and lay down. I was so tired. I stroked her hand and talked to her; I babbled a little about the festival. I drifted in and out of sleep.

  Sometime in the wee hours of the morning, I woke up. Mom was still breathing noisily but she seemed to be asleep.

  The overnight caregiver peeked in.

  “It will be many days,” he said. “I know how strong your mother is. And I have seen this many times.”

  I was crying. “I’m sorry. I’m crying because I’m so exhausted.”