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Publisher: Springboard Press
Pub. Date: August 6, 2009
ISBN-13: 978-0446699709

Measure of the Heart featured in O Magazine, read the article, Wired for Sound by Oliver Sacks, MD here.

Are you interested in making the world a better place by spreading the word and getting involved in the healing power of music, especially when it can help people living with Alzheimer's disease? Are you a musician, and in particular, an a cappella singer? For published references on music therapy most likely to engage people living with Alzheimer's, sources of vocal groups near you, ideas on getting started, etc., please contact Bart at with 'Alz' in the subject line.
Excerpt

Chapter One

Missing Moments

The farmhouse where I grew up has that sweet musty odor of a century-old wooden home. Ever since I left for college, whenever I came home, it seemed as if the floorboards and walls contained secrets that seeped from each knot in the wood. I used to have a ritual whenever I returned: I would place my hand against the wall next to the front door. When I held my palm there, it was as if I could feel—even see—the various stages of our lives that this house has contained since my sisters and I were small. There is my little sister at age three with her stiff blond hair that grew straight up in the air from the day she was born. There is my older sister strolling by in her bell-bottom blue jeans and Indian print top in high school. There is my mother in what we call The Big Hair Days with her white cat’s-eye sunglasses in the 1960s. There is my father, holding his briefcase and wearing a suit as he comes home from work in the 1970s, opening the car door and rubbing the ears of our springer spaniel, who bounded out to the driveway to welcome him.

When I returned at the end of February 2005, there were still a few pine needles stuck in the carpet from Christmas. I remembered what a thrill it had been to come home for the holidays when I had lived in Los Angeles, San Francisco, or New York. Like now, something special would be cooking on the stove. Just as it had happened back then, when I walked in the door, Mom rushed to hug me. But it was different this time, because my father didn’t even try to greet me at the door and say hello.

Dad stayed seated in his reclining chair in front of the TV. I could see the back of his big, square head, cocked at an angle I didn’t recognize as his. When I walked into the family room, he didn’t try to get up. He just shouted, “Who’s there?” When my mother said several times “It’s our daughter!” he seemed to understand and began to turn his head toward me. After I greeted my mother, I leaned down to the reclining chair to kiss my father’s cheek.

This time, instead of feeling the excitement of coming home, what I was experiencing was more like a warm reckoning. This time, instead of settling in for a few days of vacation, knowing I would return to my home in a big city, I had a queasy feeling. Do I belong here? Will I be able to help my father and mother? Will I become the daughter I used to be? Will they treat me like an adult? Will I treat them like the parents they were when I was a teenager? Will our lives expand as we live together, or will our differences make our lives smaller? Will they eventually resent me? Will I resent them? But the questions seemed to disappear as I hugged my father, and he said, as if I had been away only for a few hours instead of almost twenty years, “I’m so glad you’re home.”

In the winter of 2005 I moved my luggage, a few books, and my computer up to my room in my parents’ house. I had put the rest of my possessions in storage. I sat down on the bed in my tiny room and scanned the corners: there was no place for the things I owned in my former life. The fancy TV I bought in San Francisco and the espresso machine I used every morning before I headed to work would remain in bubble wrap. My beautiful china and glassware and the pots and pans I used when I had friends over for dinner at my apartment in San Francisco would remain in storage, too. There was no room for the trophies and photos of stories I had covered as a journalist over the past twenty years or for my collection of small boxes, my books, my sheet music, my percussion instruments, and my bird identifi cation books. The things that defi ned me, like much of my life, would remain on hold while I helped my mother take care of my father.

The bedroom was very much like it was when I was little. In fact, I realized as I examined the room that there were no indicators of any of the things I had accomplished since I left home, no sign of the woman I had become. On the shelf in front of the bed were just my Three Little Pigs house, a collection of my Steiff animals, and a few dolls. It was as though my life had remained in suspended animation, my room a museum of the time I had lived there. Everything seemed to have been frozen the day I left for college. Now I would use my mother’s china. I would use the furniture I used as a child, and I would try to fi t my life into this small bedroom.

I folded the small amount of clothing I had brought with me and put it in drawers. I hung a few suits I used to wear to work in the closet knowing I may not use them for some time. Then I set up my computer in my father’s den. His disease has taken away his ability to do anything in there anymore. That’s when I started feeling like some sort of interloper. I was moving into some of the spaces he was leaving.

It was a strange feeling, this coming home. I thought I would feel more rooted. But instead I felt uprooted. I was stepping into my parents’ lives. I didn’t have my own life anymore.

A good friend of mine in San Francisco had sent me a card recently with this message: “Sometimes your only available transportation is a leap of faith.” It rang very true for me at that point. I had leapt. Had I landed in the right place? I thought the answer was yes. But as with many major life decisions, I had lost some things—and some people—along the way.

For this time in my life, because of this strange and unexpected decision I had made to come home to my parents, I had removed myself from the adrenaline rush and the sometimes cold and ruthless world of reporting and anchoring the news. I was now living my life by totally new rules. Instead of living in the world of broadcast journalism, I was being given a chance to live in a place of total love and caring for someone else.

I didn’t have children. Though I had once been married, and though I had had several long-term relationships, my only responsibility in my previous lives in Los Angeles, San Francisco, and New York had been to myself and my career. Trying to have relationships and maintain a high-pressure career at the same time hadn’t worked so well. Too often, I simply hadn’t given the relationship the time and caring and understanding a relationship needs.

I had never defined myself by a relationship. My work was all that mattered. I handed out business cards wherever I went. I hardly ever introduced myself with just my name. At most social gatherings and appearances, I introduced myself with my name followed by the call letters of the station where I was working at the time: KFWB, KGO, or WCBS Radio. Sometimes friends who were with me on such occasions pointed it out to me and told me it was obnoxious, but I kept doing it anyway. My job at the radio station was who I was.

There are no call letters by my name anymore. Now, for the first time in many, many years, I don’t identify myself by my career. My values and priorities and how I think about the world have changed immensely. I defined myself and my life in a whole new way. These days, it is the measure of the heart that matters most to me. I can only hope that my heart will be as large as my father’s when I begin to leave this world.

“The day he can’t tie his tie. That’s when you know.” That’s what one of my mother’s friends told her about the moment she knew her husband had Alzheimer’s disease. When my mother heard that story, she told me she had thought to herself, That will never happen to me. My father had tied his tie before heading to work every morning for more than forty-five years. His tie (and tying it) was part of his life, part of him. It was how he announced himself to the world. She thought, It will never happen to us. It will never happen to him. And then it did.

My mother says she and my father were heading out to a dinner party. He went into the bathroom to get ready. He spent a very long time inside and then opened the door, holding his tie in his hand with a confused look on his face. He held out the tie and walked up to my mother and said, “Can you help me do this?” He had forgotten how to tie his tie. My mother says that was a turning point. It’s how she knew her life would never be the same, and that my father would never be the same. That was also when she couldn’t pretend he didn’t have Alzheimer’s disease anymore. Alzheimer’s disease is a progressive, irreversible brain disorder with no known cause or cure. It attacks and slowly steals the minds of its victims. At the beginning, symptoms of the disease include memory loss, confusion, impaired judgment, personality changes, disorientation, and loss of language skills. Alzheimer’s disease is the most common form of irreversible dementia. It is always fatal.

A German doctor named Dr. Alois Alzheimer discovered the disease a century ago. He noticed changes in the brain tissue of a woman who had died of an unusual mental illness. During an autopsy, he discovered abnormal clumps and tangled bundles of fibers in her brain. Today, these plaques and tangles in the brain are considered signs of Alzheimer’s disease. Although scientists are learning more every day, right now they still do not know what causes Alzheimer’s.

Though early-onset Alzheimer’s can strike people who are under age sixty, the majority of people are diagnosed in their sixties, seventies, and early eighties. As Alzheimer’s takes hold and people lose their memories and abilities, some become angry and violent. Others become docile and childlike. Some, like my father, become even more sweet and gentle than they were before Alzheimer’s took hold.

Several decades ago, people with Alzheimer’s would simply have been called senile or crazy. They might have been locked away in an insane asylum or nursing home, or left in a wheelchair or hospital bed to atrophy until they died.

Alzheimer’s disease attacks the neurons, or nerve cells, in certain areas of the brain, gradually eroding cognitive ability, altering behavior, and affecting a person’s ability to live on his or her own. Some people die just a few years after being diagnosed. Some can live twenty years after Alzheimer’s symptoms appear. Researchers say the plaques and tangles appear at the same time as a depletion of the neurotransmitters that make up what’s called the cholinergic system. This is the system that affects memory and learning. As Alzheimer’s disease progresses, this system and the neurons themselves are progressively destroyed. Scientists say that when Alzheimer’s kicks in, two signifi cant abnormalities appear in the brain: neurofi brillary tangles, which are twisted nerve cell fibers that appear inside neurons, and neuritic plaques, which are deposits of a sticky protein known as beta amyloid, surrounded by the debris of dying neurons.

As I learned more about my father’s disease, I tried to picture the process. So that was it—beta amyloid creeping into my father’s brain. This was the enemy. At times I imagined it like some alien substance in a horror fi lm: sticky goo entering his brain, taking my father away.

Researchers have recently been able to identify the spot in the DNA responsible for letting Alzheimer’s in. They have pinpointed the place: chromosome 14. I imagine the brightly colored plastic DNA model from high school displayed on my teacher’s desk. It is another target of my rage. That is the place, that is the spot that is responsible for destroying my father’s memories. It is why I curse chromosome 14 and beta amyloid on a daily basis.

Here’s what doctors and scientists don’t tell you about Alzheimer’s disease: it breaks your heart a little bit each day. I don’t know how my mother, or any spouse who becomes a caregiver for an Alzheimer’s victim, survives the pain of caregiving alone. When I was in New York, I had a vivid recurring dream of my father’s head rolling off and falling onto the ground. I wanted so much to stop it and felt, in the dream, that there must be something I could do to keep it from falling. I kept trying to keep his head from hitting the ground, but in the dream there was nothing I could do.

In another dream, my father’s face looked normal, the way it used to, before he got Alzheimer’s, before his eyes looked slightly vacant, before his face took on a slack, lionlike look. Then his face would crack and fall apart, like it was made of egg-shell-thin porcelain china. In the dream, I would pick up the pieces and try to put his head back together, like in the Humpty-Dumpty nursery rhyme.

When I came back to Michigan, the Humpty-Dumpty dreams stopped. But now there were two new ones. The week after I came home, I dreamed I had Alzheimer’s, too. In my dream, everything in my vision seemed to be narrowing and falling away, just the way Dad used to describe his disease to me. (“Everything’s escaping,” he would say. “Everything’s getting smaller.”) My vision went from color to black and white and got blurry around the edges. I felt paralyzed and unable to speak. I felt such a profound sense of sorrow, and in the dream, Dad was sad along with me. We said to each other, “We aren’t going to be able to tell everyone how much we love them.” I felt strongly that I was dying along with my dad.

The dream jarred me awake. When I opened my eyes, I wondered if this was one reason Dad tells us he loves us over and over again. Perhaps he understands that one morning he will wake up and be unable to speak. Or worse, one day he will wake up and he won’t know who we are anymore.

The third dream I had after I came home was even more disturbing than the others. In it, Dad was wearing his khaki pants and brown leather jacket. We were in some sort of large store or shopping mall (these are the places where I often worry he will get lost). He looked at his watch repeatedly, the way he often does these days when he’s anxious and he feels it’s time to go home. In this dream, he looked at his watch one final time, and then he started to run. He ran so fast that I couldn’t catch up to him. I tried to stop him, but there was no way I could keep up with him. I had to give up. I simply quit chasing him and watched him disappear. In the dream, I knew he was gone for good. When I woke up, I thought, Maybe Dad is right. Maybe it is time for him to go. Maybe we should let him go away on his own. Maybe we’re keeping him here longer than he wants to stay.

Recently I found a collection of books about Alzheimer’s lined up on a back shelf in the den my father used to use all the time. I picked up one called Alzheimer’s and Dementia. I thought perhaps these were books my mother had bought after the diagnosis, but when I opened them, I saw they were marked with bright pink magic marker. This isn’t Mom’s style. She’s the one I thought would have been reading this, but I was wrong.

I flipped through the pages. There was Dad’s bird-scratching handwriting with his favorite razor-point Pilot pen in the margins. He had apparently bought this book after his diagnosis. I pictured him at his big desk holding that pen of his before he became unable to read, before Alzheimer’s took away his ability to comprehend the printed word. He used to spend hours in that room reading and writing letters. He loved corresponding with people and connecting people with others.

But one night, in this very den, he had opened this book not long after his diagnosis and searched for answers about his disease. By the time he read the book I was holding in my hand, he was already losing his ability to spell. He had circled a portion of a paragraph about “adverse reactions” on page 93 and next to it wrote precicley (sp) in felt-tip pen. I could tell he had had difficulty trying to remember where the c’s and s’s should go.

My dad was once a stickler for proper spelling and grammar. In fact, Matt, the man who took over my father’s company after he retired, would spend hours putting together presentations on new marketing strategies to help make the company more successful. He would put his presentations in booklets to impress my father, and often, my father would return them with words crossed out, punctuation put in the proper places, and misspelled words corrected. He would then advise Matt to correct the grammar and spelling before he would even discuss the topic of the presentation.

Dad had painstakingly gone through each paragraph of the book on Alzheimer’s, underlining furiously, trying to make sense of it, trying to fi nd out what to do. There were lots of exclamation points, lots of yes’s in the margins. What could have been going though his mind? Certainly, a kind of fear, and the growing knowledge that his and my mother’s lives weren’t going to turn out the way they had planned.

More than a decade ago, my father had touched this book trying to fi nd answers. I was now sitting at this same desk, looking through this same book, trying to find answers of my own. Back then, neither of my parents knew the toll it would take on my mother. They probably thought my mother could do this alone. Back then, they didn’t know their middle daughter would be coming back home.

I didn’t have much time to reflect on this because there was a specific task at hand: getting my father ready for double knee replacement surgery. It was one of the major reasons I had decided to come home. Perhaps this was a good thing because it forced us to dive right into a shared caregiving schedule rather than focusing on how weird it was to be creating this new version of a family.

The first thing my mother and I did was to synchronize our Franklin Planners. Mom filled me in on all the doctor’s appointments for the coming weeks. We went through Dad’s pills and she described his routine: how he liked his cereal, what was good to give him for lunch, when he should take his pills, when to give him a nutritional supplement, how to get him in the shower and make sure he used his shampoo, how to put out his shaving cream and razor, and how I must stand next to him to make sure he doesn’t use the soap instead of the shaving cream. She explained that I would have to show him the toothbrush and make motions with my hands so he would remember how to use it, what channels he likes to watch on TV, what things he can do alone and can’t do alone. “Don’t let him make a fire alone,” she said. “He doesn’t understand how to light a match anymore. Don’t let him pour beverages for himself anymore; he almost always spills. He doesn’t know how to get food for himself anymore.” My mother and I were in the process of forming a caregiving team.

As we tried to arrange a daily caregiving schedule, I realized I was writing things such as “pick up Dad’s medication” and “call Dad’s urologist” in the same columns in my Franklin Planner where I used to write “interview the mayor,” “file for ABC News,” “staff meeting at KGO,” “meet Michaelynn at Café Trieste on Columbus Avenue,” “meet Suzie at the San Francisco Symphony,” or “meeting today in the WCBS conference room.” So much had changed in such a short period of time.

It seemed that we spent the first two weeks either on the phone helping to coordinate the upcoming surgery or going to the doctor. In between, I took my father to a nearby gym to keep his legs strong, following doctor’s orders for exercises to get him ready for the upcoming medical procedure.

We started out very organized, focused on the specific task at hand. We filled up each day with activities and appointments, and it seemed we never slowed down until 6 p.m., when we watched the news together. After Dad went to bed, my mother and I read or watched TV or planned the next day together. We were able to talk and get to know each other again. Then, in the night, I would go into my father’s den to write.

It was a very different life. I was used to waking up to the sound of a pager or heading to the newsroom to cover a story or anchor the news at 2:30 or 3:30 a.m. for the morning drive show at the radio station, putting in eight-to twelve-hour shifts in the field or in the studio, and then, at night, going out to restaurants and jazz clubs, charity fund-raisers, performances, and shows. When I worked the afternoon anchor shift in New York, I could sleep until 10 a.m. to get to work by noon and could stay out all night long if I wanted to. Life was full of activities, both work-related and social. Lots of parties. Lots of chaos. No particular routine except for my reporting or anchoring shift. It’s the way I had always lived. Even if I fi nally did get to bed at a normal hour, I usually woke up in the middle of the night to write or sing or listen to music. Sometimes I would cook things at odd hours or take a bath at 2 a.m. I have always been restless, and some nights I didn’t sleep at all.

I was used to living alone and being as messy as I wanted to be. My older sister says I am dirt blind. This was definitely a problem I was going to have to work on right away. My mother is a perfectionist. She cuts up fresh strawberries in tiny, even, beautiful slices and sprinkles blueberries artfully in my father’s and her cereal bowls each morning. When she eats, there are no crumbs at her place. All the surfaces in her kitchen are clean, even when she cooks. The house where we grew up was tidy and orderly most of the time except for the children’s bedrooms.

My life in Los Angeles, San Francisco, and New York was the complete opposite. My bedroom was a tornado of clothes and piles of dirty laundry. In the kitchen, dirty dishes might sit for days on counters or in the sink while I worked on a big story. I didn’t care. I felt I didn’t have to. I lived alone. Though I love to cook, the rest of domestic life has always eluded me. Through the years, I had hired several cleaning teams to help me out, and several of them had simply disappeared or quit. My neighbor saw one of the people I hired running from my apartment with the cord of her vacuum trailing behind her. There was, he said, a look of panic and anger in her eyes. I never saw her again.

When I got around to it, I usually took my laundry to a service down the street. I didn’t even know how to iron and didn’t have the patience to mend anything. Once, when I was covering a story in Los Angeles, a button fell off the front of my shirt in a very revealing spot. I was going live on a story every twenty minutes and had no time to sew on a button (nor the knowledge or talent to do so) and had no safety pin with me. I walked into a Gap store and in lightning speed picked out and bought a new shirt. I changed in the dressing room. I took the shirt with the missing button out on the street and gave it to a homeless person. Then I picked up the microphone and continued reporting live on the story I was covering.

My mother would never throw a shirt away just because of a missing button. She is a child of the Depression. That would be considered a terrible waste. Besides, she probably could have sewn on the button in a matter of seconds.

She has all sorts of mysterious, sweet-smelling laundry-, sewing-, and ironing-related products. She once told me she actually takes pleasure in ironing my father’s shirts. She mended and even sewed some of our clothes. She darned socks. For me, these things were almost unimaginable.

Now that I had come home, she was teaching me about alien procedures and products that I’d never learned or cared about before. For instance, she explained that Soft Scrub with Bleach is the only way to clean a kitchen sink. Linoleum simply doesn’t shine without Mop & Glo. And Oxyclean—it cleans everything. How did I live without it?

Basically, I was messy. Extremely messy. And disorganized. So the living arrangement of the three of us was going to be a challenge. My mother, a clean, organized perfectionist, was now living with a woman who had no desire to keep house and a man who couldn’t remember how.

When I first came home, I worked on learning how to clean up after myself and not leave dishes and pots and pans out when I cooked. I vowed to try to keep communal areas as clean as possible. Mom vowed to not even venture upstairs to look at the way I conducted my life in my childhood bedroom and the room next to it I was using as a sort of offi ce. It was a hands-off, sight-unseen rule, kind of like a domestic “don’t ask, don’t tell” policy to protect my mother’s mental health.

Because laundry was not my specialty, my mother volunteered to continue being the laundress for all three of us, promising no resentment for her role. We have dubbed her “laundry queen” because she is so good at it. She says it gives her satisfaction. Perhaps it’s because when you live with someone who has Alzheimer’s, you can never be fi nished with anything. But laundry? Laundry you can thoroughly clean. You can finish it and fold it and put it away in drawers and say when it’s done, unlike my father’s Alzheimer’s, which is always unraveling and out of control.

What struck me most when I came home was that everything was so quiet. At times a whole day would go by with only the sound of a few trucks going by on our dirt road or a barking dog. Deer often graze in our backyard. I was used to the sounds of sirens and car horns in L.A., San Francisco, or New York, cell phones and pagers going off constantly. But the only loud noise I could recall after coming home was when a flock of wild turkeys pecked against the windows in the family room one morning.

No matter how hard I tried to live my life in a cleaner, quieter, and more organized fashion, however, I still brought some of my frenetic life with me to this quiet house in the country and into my parents’ lives. I was transferring my passion for reporting to a passion for taking care of my father and helping my mother. I thought that I would dive right into the task of caregiving the way I dove into a big story. I suppose I figured that if I attacked the task this way, there wouldn’t be much time to have regrets about this new life I had taken on.

I saw my job as threefold. First, I wanted to help my mother take care of my father by taking on some of the routine caregiving duties so she could try to have her own life. I saw this not just as helping with the quality of her life, but also as a way to actually help prolong her life, to free her of the shackles of defining herself as Dad’s sole caregiver and help her see there could be a future of her own, another chapter in her life in which she could do many of the things that she had been unable to do while she was taking care of Dad alone.

Second, I saw myself as a kind of companion for my father, to help ease the emotional burden for my mother and to make my father feel more comfortable. I wanted to help my mother take care of Dad by buying groceries, fixing some of his food, taking him to some of his doctor’s appointments, taking care of him alone both in and outside of the home so Mom could do things on her own, and begin to take him to day care on a regular basis. I also wanted to create a relationship with him separate from his relationship with my mother so that he could become less dependent on her. Physical and mental exercises, including singing songs, became part of our routine. I wanted to create daily rituals that were our own so my mother wouldn’t be the only one responsible for his well-being. And I wanted to help with the daily housework (even though it was, as yet, foreign to me) that my dad couldn’t understand how to do anymore in order to ease the physical burden for my mother.

Third, I saw myself as someone who could help execute not only routine and mundane activities but fun and relaxing things, everything from getting my mother out the door to get a manicure and pedicure to getting her to go on a Caribbean cruise—in other words, to help my mother not only have her own life but also to begin actually enjoying life again.

These were the things I wanted to accomplish. I set out to do them the way I would approach any big story. Of course, I wanted to succeed. I was used to winning awards and getting the big stories and getting answers to my questions and being on the number one show. What I didn’t know at the time is that you can’t win at caregiving. You can’t succeed. You can only help a little bit along the way. But, as I would learn later, that doesn’t necessarily mean you have failed.

Copyright © 2008 by Mary Ellen Geist