The New York Times wrote a front page story on Mary Ellen on Thanksgiving 2005. It was one of the most e-mailed stories for the month. Through her own story and through interviews with doctors and other women who've followed the "Daughter Track"--leaving a job to care for an aging parent--Geist offers emotional insights on how to encourage interaction with the loved one you're caring for; how to determine daily tasks that are achievable and rewarding; how the personality of the patient affects the caregiving and the progression of the diseases; as well as invaluable advice about how caregivers can take care of themselves while accomplishing the Herculean task of constantly caring for others.
Geist's years in journalism allow her to report on Boomers' caretaking dilemmas with professional objectivity, and her warm voice brings compassion and insight to one of the most difficult stituations a son or daughter may face during his or her life.
The New York Times wrote a front page story on Mary Ellen on Thanksgiving 2005. It was one of the most e-mailed stories for the month. Through her own story and through interviews with doctors and other women who've followed the "Daughter Track"--leaving a job to care for an aging parent--Geist offers emotional insights on how to encourage interaction with the loved one you're caring for; how to determine daily tasks that are achievable and rewarding; how the personality of the patient affects the caregiving and the progression of the diseases; as well as invaluable advice about how caregivers can take care of themselves while accomplishing the Herculean task of constantly caring for others.
Geist's years in journalism allow her to report on Boomers' caretaking dilemmas with professional objectivity, and her warm voice brings compassion and insight to one of the most difficult stituations a son or daughter may face during his or her life.
Measure of the Heart: A Father's Alzheimer's, a Daughter's Return
Measure of the Heart: A Father's Alzheimer's, a Daughter's Return
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Overview
The New York Times wrote a front page story on Mary Ellen on Thanksgiving 2005. It was one of the most e-mailed stories for the month. Through her own story and through interviews with doctors and other women who've followed the "Daughter Track"--leaving a job to care for an aging parent--Geist offers emotional insights on how to encourage interaction with the loved one you're caring for; how to determine daily tasks that are achievable and rewarding; how the personality of the patient affects the caregiving and the progression of the diseases; as well as invaluable advice about how caregivers can take care of themselves while accomplishing the Herculean task of constantly caring for others.
Geist's years in journalism allow her to report on Boomers' caretaking dilemmas with professional objectivity, and her warm voice brings compassion and insight to one of the most difficult stituations a son or daughter may face during his or her life.
Product Details
| ISBN-13: | 9780446537919 |
|---|---|
| Publisher: | Grand Central Publishing |
| Publication date: | 08/13/2008 |
| Sold by: | Hachette Digital, Inc. |
| Format: | eBook |
| File size: | 659 KB |
About the Author
Mary Ellen Geist was most recently the afternoon anchor at WCBS Radio in New York, which is the flagship station of CBS Radio and CBS News. She was heard everyday by an average of two million people. Prior to that she was the morning anchor at KGO Radio station in San Francisco, and an anchor in Los Angeles for almost 20 years.
Read an Excerpt
Measure of the Heart A Father's Alzheimer's, A Daughter's Return
By Mary Ellen Geist Springboard Press
Copyright © 2008 Mary Ellen Geist
All right reserved.
ISBN: 978-0-446-58092-2
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 LosAngeles, 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 identification books. The things that defined 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 fit 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 significant 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 film: 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 find 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 find 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.
(Continues...)
Excerpted from Measure of the Heart by Mary Ellen Geist
Copyright © 2008 by Mary Ellen Geist. Excerpted by permission.
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