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Book Jacket

Trade Paperback
256 pages
Oct 2003
Baker Books

Twilight Travels With Mother: How I Found Strength, Hope, and a Sense of Humor Living With Alzheimer's

by Mary Ann Mayo

Review  |   Author Bio  |  Read an Excerpt


Chapter One

Make Me a Child Again

Backward, turn backward, O Time, in your flight. Make me a child again just for tonight! Elizabeth Akers Allen

The Fear

I have never been bothered by birthdays. Such idiosyncrasy is due mostly to my mother, who had a healthy and honest openness about becoming older. It has been nurtured by the fact that I tend not to look my age. I’ve relished the exclamations declaring I couldn’t possibly be as old as my birth certificate declared. “You look so young,” friends (the real ones) exclaimed. “No, you couldn’t possibly be . . . !” rolling their eyes in amazement. In truth, I’ve gotten so much mileage from looking younger than my age, I’ve actually considered lying about being even older—cashing in on a potential exponential ego boost.

When sixty began to press in on me, however, my feelings changed. There was something about “the big six-o” that was different. A disquieting unease descended on me that lasted several months. I suspect looking fifty but feeling more like ninety had something to do with it. Increasingly I found myself groaning as I got out of bed, simultaneously speculating about just what part of me might fall, fail, or flail. I began praising Eve for sinning and being responsible for the need for clothing. My prayers also paid tribute to contact lenses, red hair dye, Lycra underwear, dental hygienists, and, especially, to the lady who invented Barbie, because she also developed replacement breasts for those of us who have given ours up for a bad cause.

No denying it, I have begun to feel my age, even if I don’t look it. That admission, coupled with worry over my family history of Alzheimer’s disease, convinced me I had to bite the bullet—it was time for a long-term care insurance policy. Accordingly, my husband and I analyzed plans and filled out applications. His application sped through the system. We imagined the acceptance committee members gleefully ordering new boats, fur coats, and vacations to exotic lands as they calculated their premiums and the lifespan of a fifty-nine-year-old, one year post-myocardial infarction. No additional information, no mental tests—he was in.

Mine, on the other hand, was suspect. I was tentatively accepted, pending the outcome of a mental screening test. Visions of warehouses for the frail and forgetful forged their way into my dreams. There would be no afternoon teas, Friday sing-alongs, and activity director for me. Food would be shoved through the door to be eaten under twenty-four-hour lighting. Just the thought of an assessment of my memory shut down my brain’s production of neurotransmitters and spiked my adrenocortical levels. In other words, I panicked.

I badgered anyone who had ever taken an insurance company’s mental acuity test. “What did they ask?” I demanded. “How long did it take? How many things did you have to remember?” I reviewed seminar notes on tests for Alzheimer’s. I kept my husband up nights helping me learn how to count backwards from one hundred by seven—subtract ten, add three, subtract ten, add three. I rehearsed associations, “When they ask you to remember sport see yourself in-line skating.” I fretted, popped ginkgo, and awaited the call.

And then it came. The tester made an appointment to interview me—I couldn’t believe it—over the phone. I was “beside myself,” as Mother might have said. I might even get a room to myself, I pondered, already calculating what Martha Stewart could do to a 10’ x 12’ space. As expected, I breezed through the interview. I remembered every word she asked me to recall, aided of course by the notepad I had conveniently left by the phone. Just to be convincing, I reversed the order of some words. I was dazzling. The examiner was impressed. It was too easy.

I began to worry. Didn’t she know what I was doing? Was the real test to see if I was together enough to cheat? What if she asked me if I had written the words down? Would I lie? Visions of no tea parties brought me to my senses. Yes, I would. The stakes were too high.

Apparently they were too high for the insurance company as well, because two weeks later a second interview was scheduled, this time in person. I tried to convince them it was a mistake; I had passed with flying colors. I enlisted the help of our financial planner; surely she could do something. My ruse was about to be uncovered, or, even worse, I would be rejected on the grounds of the rapid deterioration that had occurred in just two weeks. My fate was to be sealed, and it was ugly.

It is reasonable to ask why a person who a month before had spoken before nearly four hundred women and taped videos for two national organizations would be so paranoid about passing an insurance company’s standard for mental sharpness. The answer, however, has nothing to do with reason. My response was unreasonable. It was irrational and illogical. I was afraid to face any evidence that might confirm the loss of my mind. Or, more accurately, I was afraid of the consequences of such a disclosure. After all, I had witnessed the payback when brain cells keep company with amyloid plaques. My fears weren’t theoretical; they were real.

In my mind, positive proof of Alzheimer’s meant I would soon be opening the dementia version of Pandora’s box. Once that occurred, there would be no end to the paranoia, contrariness, and downright havoc I would be doomed to unleash. Wide open, Pandora’s dementia box would embolden but not enlighten me. Who knows, I might take to prancing around my retirement facility in a blouse and nothing else. I would plan great escapes. And, if I forgot where the bathroom was, I would decide the trash can by my bed was a close enough facsimile. I would no doubt believe my son and daughter had malevolent motives toward me and write endless notes saying so. I might even develop a new vocabulary—one more suitable to sailors and bar owners. I would stamp my foot and develop my personal version of an “evil eye.” I would use it when I couldn’t have my way, like when I wanted to go home, even if that meant a trip back in time as well as geography. Worse yet, what if the contents of the dementia box included an eraser that would wipe out more than forty years of shared love and history with the man I married “for better or worse.” While any of these fears could easily justify nervousness over facing a test, the bottom line is the same. My greatest fear is that I am doomed to repeat my mother’s behavior and experience. Simply stated, it is that I am destined to become my mother.

I do and I don’t want proof I’m losing it. My memory, since my early forties, works in quirky ways. Whether or not I am developing Alzheimer’s, the disease casts its shadow on my life. I know I am not alone. It is a fear shared by anyone who has seen firsthand the ravages of Alzheimer’s. And so, while I try both to educate myself and put into practice habits that will stave off what may be inevitable, I prepare for the worst. My hope is that long-term care insurance will provide some protection for me and my loved ones, ensure some dignity, and increase choices. It may also enable me to leave something behind for my children and grandchildren besides debt.

When the doorbell rang, I realized that Pandora and her dementia box had arrived. The insurance representative seemed nice enough. I invited her in and got us both some green tea. With heart pounding, I tried my best to answer her questions. For all the medical problems I have had, I am in pretty good shape. My husband and I eat well and for the last ten years or so have been advocates of nutritional supplements. My bones are strong from good practices like drinking lots of milk as a teenager and a lifetime of physical activity of one sort or another. For my sixtieth birthday I bought myself a set of in-line skates. The eleven-year-olds at the skate park and I have developed a mutual respect, although they have been little help, despite great effort, in teaching me how to stop. They insist on doing a one-eighty in the air while I have mastered only a “crash and burn” technique.

An hour and a half of questions about my physical well-being were checked off with little difficulty. And, yes, the inevitable occurred. I was asked to remember ten words—I recalled eight and could recollect all ten for the next three weeks, real-life proof of how stress affects one’s memory. I had to count backwards only from twenty by three. Still, you might be interested to know that I almost flunked. The last assessment, my blood pressure, was sky high. I was stunned. I am the low blood pressure queen. For the first time in my life, I was floating up there in the danger zone. What was it my mother used to say? “Sometimes you can’t win for losing.”

The Reality

The health site on the MSN web site defines Alzheimer’s disease as “a degenerative disease of the brain from which there is no recovery. Slowly and inexorably, the disease attacks nerve cells in all parts of the cortex of the brain, as well as some surrounding structures, thereby impairing a person’s abilities to govern emotions, recognize errors and patterns, coordinate movement, and remember. At the last, an afflicted person loses all memory and mental functioning.”1

“Degenerative, no recovery, impairing, loses all . . .” anyone who has not discovered the fountain of youth has reason to worry. Alzheimer’s disease (AD) would not be anyone’s choice for retirement. While technically accurate, this definition is about as blunt and discouraging as it gets. It is not the complete picture, however. It overlooks the fact that for most people AD is slowly debilitating, and a lot of living, loving, and humanity lie between the diagnosis of a “degenerative disease” and “loses all memory and mental functioning.” Alzheimer’s may not be a picnic, but neither is it the immediate end of a productive, meaningful, and joyful life.

If there is anything to look forward to, it is that anyone who suffers from AD in the next fifty years will not be alone. By 2050 one in forty-five Americans will be diagnosed. In case you worry that there is something in the water, most of this increase is due to an aging population. While 5.9 percent of the population was over seventy-five in 2000, by 2050, 11.4 percent will be. While the risk of AD at sixty-five is 5–10 percent, that risk is said to almost double every five years until age eighty-five. For you engineers, that means if you live to eighty-five, you will have an approximate 50 percent chance of also living with AD. It also means that if the onset can be delayed by just five years, the worldwide prevalence would be halved.2

Approximately four million people in the United States are currently diagnosed with AD. Based on the 2000 census, predictions range from eleven million to sixteen million by 2050.3 It is estimated that nineteen million are currently affected in one capacity or another as caregivers of people with AD. A one-hundred-billion-dollar price tag is included, mostly out of the pocket of common folk. AD and lung cancer are currently tied in third place for the leading causes of death in the United States. By 2050 Alzheimer’s will be second, overtaking cancer and nipping at the heels of heart disease for the number one spot. Among developed countries it is believed 13.5 million afflicted people in 2000 will grow to 36.7 million in 2050. Developing nations that had 8.6 million sufferers in 2000 will have 36.7 million in 2050.4

The main determinant of death, of course, is age. On average a person who is eighty will live about seven more years; an eighty-five-year-old will live about five more years. As noted, pushing back the onset of AD as far as possible can make a significant difference in the amount of care ultimately needed. There is room for debate as to how long one lives with Alzheimer’s. My mother began to show the first signs of disease around her sixtieth birthday and died when she was eighty-four years old. Generally the younger one is when affected, the longer one lives. This makes sense for a variety of reasons, not the least being that younger people are healthier to begin with. A recent Canadian study reported a median of 3.3 years of life after diagnosis with memory problems. In their sample, the average age of onset was 83.8 years.5 Other studies propose times more in line with heart disease and cancer, 5–9.3 years. The obvious difficulty is pinpointing when problems begin. It is a safe bet that it is not when a doctor officially declares it so.

The problem lies in the fact that the changes older people complain of are frequently dismissed as normal aging. But the truth is, significant impairment and disability are not normal parts of growing old. Education on how to make such a distinction in diagnosis is imperative. An accurate finding is important because there are dementias that can be treated.6 Problems with memory can have many causes; for example, polypharmacy (interaction of multiple prescription and/or nonprescription drugs), depression, alcohol abuse, or drug toxicity, just to name a few.

Early diagnosis of Alzheimer’s, the most common dementia, is equally important. Knowing what a patient is truly dealing with helps prevent costly trips down the wrong medical path and gives people time to prepare and to begin treatments for symptoms such as depression, wandering, and incontinence. Contrary to conventional wisdom that there is nothing that can be done after a diagnosis of AD, medications do exist that delay the onset and progression and that are most effective if begun early.

My reaction to my potential diagnosis of AD, while a bit over the top, is not unusual. I am joined by apprehensive Baby Boomers who spend millions on memory enhancement aids, books, mnemonics courses, and nutritional supplements. For them, minor glitches, like losing one’s keys, become proof positive the funny farm is just around the corner. Though healthy and functional, they, like me, have become the “worried well.”

The statistics concerning the number of people who will be touched by Alzheimer’s are indeed grim. Personal experience with the disease merely ups the ante. Still, perspective is called for. If 50 percent of us are destined to lose our minds in varying degrees by the time we are in our eighties, there are still 50 percent of us who won’t be afflicted. A study of centenarians, the New England Centenarian Study, conducted by gerontologist Thomas T. Perls under the auspices of Beth Israel Deaconess Hospital and Harvard Medical School, focused on what enables people to age well. With a similar outlook, this book is an effort to look at AD from the perspective of aging well.

Dr. Perls’s goal is an overall decrease of disease. He has been known to comment that his interest is not looking for the “fountain of youth” but the “fountain of aging well.” His hope is that research on the healthy aged will give clues as to how we can live life as disease free as possible. Then a full and generally healthy life will be followed by a short state of ill health that leads to death.

People who live to be one hundred years old have, for the most part, lived this healthy life. The oldest among us tend to have a sense of humor and an ability to adapt to their circumstances. They “mourn and move on.” Positive attitudes abound. At least 25 percent have good cognitive ability; 9 percent still live on their own; most remain active mentally and physically. One striking feature is the very strong social networks and/or families that have characterized their lives. If they don’t have family (or have outlived them), they create new ones. If they move to a nursing home, they make a life for themselves there. We “worried well” should take heed.

The majority of centenarians have taken good care of themselves, giving up smoking, watching their weight, eating a balanced diet, and getting appropriate exercise. There are exceptions. Madame Jeanne Calment of France quit smoking at age 117 and died at age 122. While we may not have the genes to live to 100 plus, most of us, by adopting wise lifestyle patterns, can improve the odds of staying healthy into our eighties. If we have relatives with Alzheimer’s or other diseases that impair well-being, it should be a signal to us that we need to do things right—the sooner the better. Dying with a worn-out body is infinitely preferable to suffering a debilitating disease, putting up with medications that make us sick while fixing something else, or slowly losing our mind.

A Brief History of Alzheimer’s Disease

In the past, older people who were no longer thinking clearly were said to have senile dementia. For the most part, such mental changes were considered a normal aging pattern. In 1906 German neurologist Alois Alzheimer diagnosed a patient who seemed to have all the symptoms of old-age senility despite being fifty-one years old. Examination of her brain at autopsy revealed clumps of neurofibrillary tangles and areas of plaque. Until the 1960s such changes were believed to be a rare form of presenile dementia found in younger people. New research confirmed, however, that the same tangles and plaques were prevalent in older people as well, concluding they were evidence of the most common type of dementia and deserving of the name of the first person who described them.

The exact cause of Alzheimer’s is not known. What is known is that there are more than one and probably many contributing factors. Why one person succumbs and another doesn’t isn’t clear. AD generally strikes people over sixty-five years of age, but it is also a disease of younger people, with almost all Down’s syndrome adults showing signs of the disease. In the end most victims die from pneumonia, urinary tract infection, or heart disease.

Researchers have noted, and it was certainly true for my mother, that in the middle and late stages of AD, when cognitive impairment is great, individuals retain a broad range of emotions.7 I was never comforted when people told me not to worry about Mother. They reasoned that since she understood little of what was going on, she was a vegetable. While their motivation was to ease my sorrow, I knew it wasn’t true. If they had taken the time to look, they would have known she was at least a whole salad. She experienced happiness, contentment, surprise, pride, sadness, distress, fear, depression, worry, and anger. Unfortunately negative emotions frequently outweighed the positive, but they were all there. Mother, who had spent her life making an art of passive-aggressive behavior, spent her twilight years letting us know what she felt about most things, real or imagined. She occasionally graced us with a tirade of swear words she must have been saving for a lifetime. Gentle and nonconfrontational all her life, she became forceful and demanding.

On the other hand, Frances Mayo in the throes of AD became as docile as a lamb. My mother-in-law had worried about “catching” Alzheimer’s from my mother, and her fears materialized. While contracting AD from a son’s mother-in-law (or anyone else for that matter) has never shown up in a list of contributing factors, I doubt we could have convinced her otherwise. Her powerful personality and bright mind had led to her being the mayor of her town, founder of innumerable good causes, and a woman who rarely refrained from telling you where she stood. Yet, as a victim of Alzheimer’s, she was quiet and agreeable. The point is, emotions expressed by a person with AD may mirror her lifelong personality or may be entirely different. Either way, emotions remain a part of the sufferer’s humanity.

Where Do We Go from Here?

The last decade has shed considerable light on brain function. New imaging techniques have provided clues to the literal places and chemistry involved in our ability to think and reason. Researchers are in a race for breakthrough drugs for AD. Brain researcher Tim Tully reports in the article “Viagra for the Brain” that effective memory-enhancing drugs are just around the corner. “It’s not an ‘if’—it’s a ‘when,’” he insists.8 And work is also proceeding that will benefit the seventy-six million middle-aged “worried well” who are beginning to experience normal changes of aging, including memory loss.

Scientists are now able to define gradations of memory loss and are investigating whether or not mild memory problems foreshadow worse things to come. There is an approximate 10 percent increase in conversion to AD from a relatively new diagnosis of mild cognitive impairment (MCI). This intermediary stage gives researchers an opportunity to study why MCI increases vulnerability to Alzheimer’s for some but not others and may help researchers discern the efficacy of early interventions.9 Ongoing studies, done in conjunction with the National Institute on Aging, are designed to pinpoint who really needs to worry—I can hardly wait!

Ironically, as exciting and hopeful as these breakthroughs will be, technology and cutting edge research can have a downside. The medicalization of old age—in reality making old age a disease—means that doctors increasingly focus on a diagnosis while doing little to actually make the person feel better. Pursuing diagnosis affords a means to avoid looking at the now, providing distance from the pain and suffering. Indeed, once a diagnosis is reached, which may have been arrived at through great expense and physical and mental anguish, the doctor may continue to ignore suffering and may institute a plan of undertreatment that actually worsens discomfort.

Is it too much to ask our doctors, who take an oath to do no harm, to look beyond diagnosis? It has been argued that preserving independence and relieving misery are in conflict with adding years to life, but there is no evidence that this is true.10 The goals of medicine remain to help and to heal. Comfort and happiness are very important at every stage of life, and to this end our hospice system needs to expand to assist more than the dying.

Many of us may share certain medical and emotional needs of aging, but often the needs are unique to each individual. Relief of a person’s suffering, then, necessitates time and empathy, and neither of these essentials is part of a managed-care system. But medicalization of old age allows the medical profession a means of externalizing the experience and ignoring or failing to acknowledge that bodies get old and wear out.

We may focus on our mental acuity, but in actuality it is not likely to be the only thing we will have to deal with as we age. Parts and pieces break and no longer function optimally; degenerative diseases on simmer for years begin to boil. And on top of everything else, we can’t remember our son’s phone number! A trip to our physician reveals his reluctance to treat, at least not without confirmation from peer-reviewed, double-blind studies. But few of those studies apply to a sixty-year-old, let alone an eighty-year-old.

The fact is we have more chance of dying from a combination of medical problems than from any one of them. Only a few of us will greet old age with optimal wellness and high function. I don’t expect to be in that fortuitous group. I do, however, intend to maximize my chances to live at my personal best. How successful I am has much to do with the responsibility I take to educate myself, rationally examine what I value, and pragmatically act on what I suspect is needed to best meet the unique needs of my mental and physical health. I must be realistic, open, and honest about my requirements and desires with my family, my physicians, and myself. I may be afraid, but I can’t be timid.

It is true that the happiest old people have been found to value well-being and social functioning more than physical or even psycho-cognitive functioning.11 Wow! That’s great! Yet for me the truth is well entrenched that life is over when I can no longer remember—as my reaction to proof that I might be losing it mentally reveals. Mother used to fret she wouldn’t be able to remember something she was experiencing. I would ask her if she was having a good time. Her answer would inevitably be yes. Alzheimer’s is a crash course in learning to live in the moment. Successful old age, apparently, has less to do with avoiding the ravages of aging than with the ability to adapt. It is not so much the condition of our body but that of our attitude that gives us a sense of having aged successfully.

At the moment, most of us seem to have more fear than questions. Courage is required to read and educate ourselves about a disease that has the power to prevent us from doing either. Nothing will be gained by putting our heads in the sand. Besides, that has never been the style of this generation. There is no reason we cannot face the ramifications of Alzheimer’s with the same confidence and success we have faced other challenges of our lives.

We live in a time when a significant body of knowledge is unfolding about AD’s causes, diagnosis, and prevention. How we ensure our dignity, quality of life, and humanity in death depends to a significant degree on how much responsibility we choose to take. Life is not over with a diagnosis of Alzheimer’s. Those afflicted do not wake up the next day with final-stage dementia. What then are the truths for us “worried well”? Chances are we will have to confront some very real issues and problems, and few of us will avoid all suffering. In the end our ability to age well will lie less with whether or not we get Alzheimer’s or any other disease and more with our adaptability and continued desire for connection to others. We were created for relationships.

Thoughts on the Twilight Journey

When I was caring for Mother, I found it difficult to read the few available books that addressed the subject of Alzheimer’s. I am sure they would have been helpful, but the sense of having every waking hour consumed with the disease kept me from reading even one paragraph. When the subject was Alzheimer’s, a book that might have been uplifting and hopeful seemed something of an oxymoron. That thought also prevented me from writing.

With each passing year, however, new discoveries and more enlightened approaches have cracked the door and hope has crept in like a cat that knows it is supposed to be outside. I have changed too. I no longer see only the decimation of a life that was once vital and creative. The horror and despair that Alzheimer’s brought were moderated by many good times and lots of laughter. Mother did a lot of living between diagnosis and death. She even managed to work in a final love story. Should Alzheimer’s be my fate, my hope will be for good times mixed in with the bad.

The truth is that the majority of Americans will be affected directly or indirectly by AD in the coming years. But whether it is our fate or that of someone we love, the instruments of care, from the technical to the social, have changed radically. The approach to this plague has evolved from the hysteria I felt in trying to guess the best care for Mother to an atmosphere of greater understanding, improved options, and increased means to interfere with the rate of progression.

I am planning ahead. Should I succumb to AD, my children will not have to struggle to know my preferences; years will not go by with their wondering if I have just gotten ornery, lost my marbles, or if something is verifiably wrong, because I will seek a diagnosis at the first suspicion of onset. I am already working at ways to help pay for temporary help or permanent care, should I need those services. In the meantime, hope, not despair, must direct my life. It is my responsibility to maintain my unique, optimal (not perfect) health. My goal is not to live forever but to live well.

Brain Boosters

   A majority of Baby Boomers will be affected by Alzheimer’s disease in one way or another.

   Normal cognitive changes due to aging do not signal AD.

   Some people are more susceptible to Alzheimer’s than others.

   Modern technology can discern who is at risk.

   Keeping our overall health the best it can be is protective against AD.

   There is nothing to be gained by ignorance or avoidance; AD must be demystified.