Kryptonite

Alzheimer's Disease

Poems

By: Amy Baird

Date: 2004

Source: Amy Baird. "Kryptonite." Alzheimer's Association. 〈http://www.alz.org/Resources/poems/ abaird.asp〉; 〈http://www.alz.org/Resources/poems/abaird2.asp〉 (accessed October 20, 2005).

About the Author: Amy Baird is a contributor to the Alzheimer's Association Web site. She writes of her experiences with her father and his Alzheimer's disease.

INTRODUCTION

Alzheimer's disease, the most common form of dementia, is not a normal part of aging. It is a progressive neurodegenerative (degeneration or deterioration of the brain's ability to function) disease. Over time, Alzheimer's disease destroys the individual's ability to learn, to think, to remember, to make decisions, to exercise good judgment, to communicate with words, and to carry out the activities of daily living (such as dressing, using the toilet, brushing teeth, and self-feeding). Alzheimer's disease is ultimately fatal, although the course of the illness varies widely. It can progress over periods as short as two or three years to periods as long as twenty years. Family members of individuals with Alzheimer's disease often say that the personality of their loved one has "disappeared" or that the loved one "has lost all personality or resemblance to the person she once was."

People with Alzheimer's disease (AD) experience behavioral, emotional, and personality changes. They may become hostile, suspicious, anxious, agitated, combative, or emotionally labile, and they may sometimes experience delusions or hallucinations that may cause them to appear mentally ill. They often experience sleep difficulties, confusion, restlessness (coupled with a tendency to wander), and depression. The primary risk factor for the development of AD is advancing age. The number of people with the disease doubles for every five years beyond the age of sixty-five.

On nuclear scans, the brains of people with AD are shown to have abnormal clumps (called amyloid plaques) and tangled bundles of fibers (termed neurofibrillary tangles) that are composed of misplaced proteins. Research has uncovered three genes that cause early onset (familial or inherited) AD. Age-related AD is believed to be caused by genetic mutations that cause displacement and build up of amyloid proteins.

The Alzheimer's Association has created a checklist of ten common warning signs that may indicate that an individual is suffering from AD. Often, the initial sign is memory loss characterized by forgetting recently learned information. This forgetfulness worsens over time, and the individual also loses the ability to recall the information at a later time. Another AD sign is loss of the ability to carry out the steps necessary to complete a familiar task, such as preparing a familiar recipe, playing a board game, going through the process of paying and mailing off a recurring bill, for example. It is quite common for people with AD to experience difficulties with the use of language. In verbal and written communication, they may substitute one word for another or use words in an anachronistic way, making it very difficult to understand what they are trying to express. People with AD sometimes combine a tendency toward restlessness and wandering off with disorientation for time and place. That is, they may wander away from home, become lost in their own immediate neighborhood, lose track of where they are and how they got there, and be quite unable to find their way home. Judgment is often impaired. Individuals with AD are more likely to dress inappropriately for local weather conditions or to be easy prey for scams, con artists, or telemarketers. Persons with AD gradually lose the ability for abstract thought. They may be unable to discern shades of meaning or to understand facial expressions or voice tones. They may be unable to manipulate information mentally, to interpret nuances, or even to understand humor. Individuals with AD often misplace everyday items by putting them in unusual or illogical locations (putting the house keys in a potted plant or a wallet in the toilet tank). They may experience rapid and dramatic mood swings with no precipitating events. For example, they may suddenly begin to weep, laugh uncontrollably, or explode in rage—all within a brief period of time and for no discernible reason. Finally, people with AD tend to slow way down. They may sleep for excessive periods of time, sit passively in front of the television from morning until night, or lose all interest in the world around them.

Nearly every person knows someone with AD, or knows someone who is affected by it—a caregiver, family member, friend, neighbor, or co-worker. Alzheimer's disease is overwhelming: to the individual, to the family, to the caregivers. It has devastating effects on the individual's entire social system. Since there is no treatment available to halt the progression of the disease, care and support remain the primary issues for the individual and family members. The Alzheimer's Foundation of America (AFA) estimates that for every one person who lives with AD, there are one to four caregivers dealing with the effects of the disease twenty-four hours a day, seven days a week.

PRIMARY SOURCE

    Kryptonite  
 
    I'm twenty years old,
    Far too young to be dealing
    With this.
 
    This is something that
    Forty-year-old mothers discuss
    With their balding husbands as they try to sleep.
    It doesn't seem real,
    Seems like a nightmare, a whirling, steaming
 
    Unreality.
 
    My Father is getting old.
    He's been going bald since before I was born.
 
    He's always had a hard time
    Remembering and now, it seems,
    He can't hear or think.
 
    The doctor suspects it could be Alzheimer's.
    That nasty word that turns
    Strong men into drooling children.
 
    I've seen it happen many times before.
    My aunt and uncle both lived with the disease
    For a few years before they died, their spirits
    Leaving weak and emancipated bodies behind.
 
    It's the most heartbreaking thing that I have ever seen.
    The blank stare that never seems to comprehend
    Who you are or what you are doing there.
    All of this waiting for me just over the horizon.
 
    I can already see him growing younger,
    Less strong and it makes my heart ache.
    He is my super hero slowly being led to kryptonite.
 
    Kryptonite II  
 
    Two years later and the lethal kryptonite
    Has its hold.
    My daddy sits in diapers,
    Drooling in a wheelchair
    As nurses wipe off his face.
 
    My mother and I take turns
    Feeding him ice cream.
    We catch the spit out parts
    With a spoon and feed him
    Like an infant.
 
    He calls me mother because
    He can't remember my name.
    Although he calls to me
    In the midst of his daydreams.
    Always telling me to not forget to lock the door.
 
    The strong man can no longer
    Save the world. He can't even walk.
    The world passes by without
    Him even noticing.
    I pass by without him noticing.
 
    The eyes look blankly out into
    The world (which only he can see).
    His world is filled with parties and
    Working outside. In reality it is only
    Filled with stark white walls and dirty linoleum.
 
    My mother lives alone.
    Alone in a big house with a dog.
    She visits him twice a day
    And cries every night.
    I try to go about my daily life.

    The pain is starting to dull.
    I watch him as the kryptonite
    Slowly takes away everything that
    He was and is.
 
    Damn kryptonite.

SIGNIFICANCE

There is currently no cure for Alzheimer's disease, but there are a number of promising treatments that may serve to lessen some symptoms during the progression of the disease. Adequate palliative care and support, for both the person with the disease and for the caregivers, can greatly improve the quality of life for all involved.

At the start of the twenty-first century, five million Americans were estimated to have Alzheimer's disease (based on the results of the 2000 U.S. Census). This is more than twice the number that were reported to have the disease in 1980, and the number of cases is expected to triple by 2050. One in ten Americans who are sixty-five or older have Alzheimer's disease, and half of those ages eighty-five or older have (or will develop) it.

As the country's, and the world's, citizens grow older and live longer, the situation grows progressively more acute. With the number of individuals experiencing the symptoms of AD growing exponentially, the issue of their care becomes a major health and social concern. Based on the assumption that there are one to four caregivers closely involved with each patient suffering from AD, there were roughly 10 to 25 million Americans dealing with AD on a daily basis at the start of the twenty-first century, and between 30 and 75 million will be burdened with it by 2050. The economic impact alone, in terms of lost wages and work time for caregivers, is staggering. According to the AFA, the yearly cost of caring for individuals with Alzheimer's disease in the United States is around $100 billion. Each family spends about $18,000 to $36,000 per year to care for their loved one with AD. In addition, the annual cost to businesses, for lost time by primary caregivers, insurance costs, and loss of revenues from decreased productivity, is more than $60 billion per year.

There are some relatively new models of support for primary caregivers, enabling them to maintain quality of life while caring for a loved one, lowering cost of care, and reducing the need to miss work and family time. One such model is the AFA's "Together for Care" model. According to the AFA's Web site, the goals of this program are: 1) to fund the start up and expansion of programs and services at national and local levels in order to better provide the optimal care families deserve; 2) to give grants to families to offset the cost of caring for their loved ones; and 3) to fund programs and services at organizations nationwide to help them offer resources either without cost or at a modest fee to families. The "Together for Care" philosophy supports the individual, the caregivers, the community, and society as a whole.

Another such model is The Eden Alternative, and its associated program, The Green House Project. The Eden Alternative is designed to promote positive changes in the ways in which communities live and work, and to create an inherent reward system for the delivery of excellent care. Its philosophy and goals focus on helping others create community environments for elders, in which they are supported, cognitively stimulated, and empowered. Elders are encouraged to live in a growth-facilitating system. Close and ongoing contact with nature, young people, and companion animals are integral parts of the model. The love and companionship of animals and children diminish or eliminate the feelings of loneliness, boredom, and isolation so common in elders living alone. Medical and supportive care are designed to be adjuncts to daily life, rather than the central focus of an individual's existence. Both of these programs offer comprehensive, humane care to the individual living with AD—as do a number of other programs—but, in addition, they focus on empowerment, support for the extended caregiver network, and the creation of a community environment. These are unique and exciting new approaches that can offer real hope for the future.

FURTHER RESOURCES

Books

Mace, Nancy L., and Peter V. Rabins. The 36-Hour Day. A Family Guide to Caring for Persons With Alzheimer Disease, Related Dementing Illnesses, and Memory Loss in Later Life. New York: Warner, 2001.

Periodicals

Hebert, L. E., et al. "Alzheimer's Disease in the U.S. Population: Prevalence Estimates Using the 2000 Census." Archives of Neurology 60 (August 2003): 1119-1122.

Web sites

Alzheimer's Association. "Common Tests." 〈http://www.alz.org/AboutAD/Diagnosis/Tests.asp〉 (accessed October 19, 2005).

Alzheimer's Association. "Standard Prescriptions for Alzheimer's." 〈http://www.alz.org/AboutAD/Treatment/Standard.asp〉 (accessed October 19, 2005).

Alzheimer's Foundation of America. "About Alzheimer's." 〈http://www.alzfdn.org/alzheimers/index.shtml〉 (accessed October 24, 2005).

The Eden Alternative. "What is Eden?" 〈http://www.edenalt.com/about.htm〉 (accessed October 24, 2005).

National Institute of Neurological Disorders and Strokes. "NINDS Alzheimer's Disease Information Page." 〈http://www.ninds.nih.gov/disorders/alzheimersdisease/alzheimersdisease.htm〉 (accessed October 19, 2005).