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On Aging with Dr. Roger Branch Sr.: 'Dread disease'
Branch WEB
Dr. Roger Branch Sr.

The term "dread disease" is not used much anymore. It once was common and applied to disastrous diseases that spread rapidly, caused great suffering and killed many people. A partial list includes smallpox, malaria, tuberculosis, yellow fever, polio, typhoid fever, pertussis (whooping cough) and diphtheria. Effective immunizations, antibiotics and better sanitization have wiped out some of these and brought others under control.

However, viruses mutate; new things keep coming up. The Zika virus has the potential to produce a worldwide population of terribly disabled people because the mosquitoes that are its carriers are found in tropical and moderate climates around the globe. And the politicians who should be coming up with policies and actions to combat it are consumed with power not leadership.

However, it is an older disease that I dread: Alzheimer's disease. There are more painful ways to die, but none more devastating to victims and caregivers. It is progressive, meaning that it steadily eats away at the very being of its victims from beginning to inevitable death, a marathon of destruction that can take many years. Some respond to a medication that slows the process, but at this time, there is no cure. A "possible" treatment has been announced, but it is a hope, not a certainty, and its use lies years in the future, pending a testing and approval process.

I am not forgetting cancer as a dread disease. It has long been one of mine. But years of funding, research and development of treatment strategies have paid off. Victories are happening, outright cures! The dread level is lower. And there are other nasty things out there with fewer victims but still dreadful for them.

I recently received a copy of a book, "The 36-Hour Day," by Nancy L. Mace and Peter V. Rabins. It contains excellent information about Alzheimer's and other forms of dementia and is a valuable family guide for understanding and caring for loved ones. I cannot begin to summarize its contents but will touch on a few points along the way.

What is Alzheimer's? It is an old folks disorder, rarely occurring in people under age 60. From that age, its prevalence rises steadily to about 30 percent among those over 85. Because the number of older people in the population is growing, the number of people with the disease also is growing.

Alzheimer's is a brain disorder. Diagnosis comes primarily through symptoms, but autopsies of the brains of deceased patients reveal shrinkage and the presence of clusters of amyloids and fiber tangles. Why? There is no clear answer yet.

Its impact on patients begins with unremarkable symptoms like forgetfulness but continues into unpredictable behaviors, many of which defy normal logic. They move into and out of cognitive worlds created by brains gone astray. Their interpretation of what they see or hear may be far from reality and threatening. Mrs. T gets upset when her husband does not answer her calls, not remembering that he has been dead for decades. Mrs. B, while still in her home, became agitated when the wind sometimes brushed the limbs of her magnolia tree against the roof of her house. In time, physical problems deepen until patients die.

We have some insight into the experiences and feelings of victims of other wasting diseases because mental faculties and capacity to communicate often continue even as their physical conditions deteriorate. With Alzheimer's, logic and the power to communicate go quickly. Do they realize that their minds are failing them, that they are sliding into and out of reality? Do they fight against being swept away? Mrs. B kept a notebook at hand and wrote things like family history with accurate birth and death dates.

"Do not go gentle into that good night," urged Dylan Thomas to his dying father. The death of the mind is another kind of night. Did my mother, Mrs. B, know that night was descending upon her? Of all the things that make Alzheimer's my dread disease, it is the thought that I might at some time realize that my mind is descending into chaos with no hope of saving that crucial center of the self.

The 36-hour day is a grinding reality for caregivers of patients with Alzheimer's disease, even worse than the burdens of caregivers for those who suffer with ALS (Lou Gehrig's disease), Parkinson's disease, multiple sclerosis and muscular dystrophy. Its strange mental states, its new developments, its sometimes threatening behavior, its clinging, its wandering, its wakefulness, its loss of inhibitions leading to foul language or disrobing, its eventual loss of physical abilities leading to incontinence and inability to feed oneself - all of these and more challenge caregivers day and night. Loving devotion cannot prevent frustration, weariness and emotional exhaustion. It is no wonder that so many of them also develop health problems.

Depending upon location, there are some sources of help for caregivers. Adult day care is an option in some communities if the patient is moveable and manageable. Respite programs bring to the home competent people to allow caregivers to go shopping, attend to business or just take a break. But these are not widely available, and some patients do not do well with "strangers." Sometimes other family members or friends can step in as temporary caregivers.

Advances in technology can help lighten the burden with such things as monitoring patients' location and condition. Peggy Luukkonen, who directs the ARDC program for the Coastal Regional Commission, welcomes consultations and can be reached at (800) 580-6860.

Most Alzheimer's patients eventually reach a level of deterioration that dictates a skilled-care facility. Problems include incontinence, inability to swallow food and water and the need for physical assistance in moving about or turning in bed. Caregivers often take this step with great reluctance. They see it as failure on their part or a broken promise to the patient or self. It is a clear sign of inevitable loss. They also know that some facilities provide good care for Alzheimer's patients, but others do not. The best guarantee of good care is to be there with the patient regularly, but an elderly spouse or working daughter or son might find that such visits are impossible.

Sometimes Alzheimer's disease destroys both patient and caregiver. Mr. and Mrs. VS are a clear example. They married after World War II, found work in industry, lived frugally, saved money carefully and retired to enjoy life together. Then Alzheimer's struck her but with limited evidence at first because she was a quiet, gentle person. She became clingy, followed him from room to room, never at ease with anyone else except a brother and sister-in-law. He cared for her lovingly, faithfully, but finally had to move her into a nursing home near their own home. He was there every day feeding her and keeping her company. Then he became a resident and patient, too. Even after she slipped into apparent unconsciousness, he sat beside her bed all day. At her funeral, he was just a shadow of himself. He died not long afterward. All of their savings were gone, that part of their lifetime devoured by the disease, which robbed them of their golden years together at its end.

Alzheimer's is a dread disease.

Roger G. Branch Sr. is professor emeritus of sociology at Georgia Southern University and is a retired pastor.



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