Alzheimer's: Saying Goodbye One Day At A Time

By Larry Johnson

   Alzheimer's is a disease that kills the personality by destroying memory, ability to learn, reasoning and communication skills before it kills the body. If you know someone with Alzheimer's, you need to say goodbye to some aspect of that person every day over the months and, perhaps, years that it takes for them to disappear.

     I speak from experience. I spent this past winter helping my sister care for our mother who is in the latter stages of this disease. She is nearly 94 years old and was diagnosed with Alzheimer's nearly four years ago. The disease had begun to destroy her brain cells sometime before that, however. There had been signs for several years, leading up to the diagnosis, that dementia was taking its toll. For instance, these included  the kettle left on the stove so long that it melted; not recognizing a cat that had been part of the family for years; mixing up the names of close family members, and manifestations of the inevitable irritability and hostility that goes along with the disease.

     Early on, the individual learns to mask or cover-up these lapses. My mother would often say, after an obvious memory screw-up, “I can't seem to remember anything today. I guess I didn't have my coffee this morning.” She would trivialize the situation and get on with the next activity.

     Eventually, however, it becomes obvious, even to the individual with the disease, that something out of the ordinary is happening to him or her. When she could no longer  pass it off as a normal or temporary condition, mother became frightened, anxious and demanding. “Something is wrong with me!” she would say, over and over again. “Tell me what is wrong,” she would demand.

     That's a difficult question to answer  for someone you care about. My mother had been a hospital nurse and had owned nursing homes and community care facilities almost her entire adult life. She knew what dementia was first hand, and to tell her that she was now suffering from the most insidious form of that condition, a condition that had put others in her care, was impossible for my sister and me. We couldn't do it, so we lied. “There's nothing wrong with you, mother,” we would say. “We all forget things.”

     But we don't all forget things like someone with Alzheimer's. As the disease progresses, a form of paranoia may set in and the person will usually experience anxiety, suspiciousness, agitation, delusions or hallucinations. He or she becomes “difficult” in nursing home parlance. They refuse to take their medication; or get dressed or undressed, as the case may be; go to bed or to get up. In short, the person's behavior becomes analogous to a misbehaving  three year old. She may also become clever and deceptive. My mother would find ways to hide her medication under her tongue until she could dispose of it in a Kleenex or napkin. When no one was looking, she would drop her food on the floor for the cat. And, perhaps, even more disturbing, was her lapse into vulgarities, something she had never resorted to before. She would have been shocked by this kind of behavior in anyone, especially herself.

     Alzheimer's disease is, primarily, a disease related to longevity. Adult-onset Alzheimer's is generally a post-65 disease that doubles in probability every five years we live beyond that time. By 85, the risk of contracting the disease is nearly 50%, according to the Alzheimer's Association.

     The biology of the disease is represented by “plaques” and “tangles.”  “Amyloid plaques are clumps of protein fragments that accumulate between the brain's nerve cells. Tangles are twisted strands of another protein that form inside brain cells ,” according to the Alzheimer's Association. One theory is, that the plaque and tangles are attacked by the body's immune system, and in the process the brain cells are destroyed by the body's own defense mechanism.

     What is known, however, is that the disease is irreversible. Certain drugs, if begun early enough, can slow the process down, and it is theorized that certain life styles may contribute to the genetic predisposition for the disease. For instance, if your parents or grand parents had the disease you may have a higher likelihood of contracting it yourself. However, it is believed that a positive lifestyle can benefit your chances of dodging that particular bullet. According to the Alzheimer's Association, controlling blood pressure, weight, and cholesterol levels; exercising both body and mind; and staying socially active, may reduce the likelihood of the disease, or at least slow it down.

     It is also only too well known what the cost of Alzheimer's is  to everyone involved. Seventy percent of people with the disease live at home, where family and friends provide most of the care. As the disease progresses, stress on the caregiver is increased, along with the stress on the patient. Without outside intervention and support, the caregiver may sometimes exhibit emotional stress that interferes with the quality of care that he or she is trying to provide.

     As a family, we are more fortunate than most families that are dealing with Alzheimer's. My sister is a retired Registered Nurse who had spent most of her career in nursing homes. She had dealt first hand, up close and personal, with people exhibiting the same symptoms as our mother. She knew the protocol for dealing with the disease, and she knew what  questions to ask, and when to ask them,  of mother's doctors. She was familiar with the medication and she had a good understanding  of  the disease and its pathology.  She also knew where to go and  how to arrange for  outside help from the county and from  hospice, in the area of Florida where she and my mother live. Few  families are  that lucky. Most caregivers are spouses or children with no medical training whatsoever. Even with her expertise and training, however, Jacquie found herself stressed out and exhausted from 24/7 care giving.  

     Apart from personal care giving, the cost to society at large is enormous. There are six million Americans with Alzheimer's and the numbers are growing rapidly with the aging of the Boomer Generation. It is projected that by 2030 the disease may have grown beyond our ability to absorb the cost. The dollars and cents cost to society annually, right now, is $148 billion. That does not include the cost absorbed by caregivers who have given up much of their own personal lives and incomes in order to care for their loved ones. That is a cost that is not easy to quantify.

     It is also not possible or, perhaps, desirable to quantify the psychic and emotional costs that go into watching someone you care about disappear before your eyes, one day at a time.