As people live longer, the specter of Alzheimer’s looms grimly on the horizon. A disease involving progressive brain deterioration, Alzheimer’s results in increasing deficits in mental functioning and behavior. In the middle and later stages, the individual is entirely dependent on others for protection and physical care on a round-the-clock basis.
Alzheimer’s disease primarily afflicts elderly individuals. It is different from normal aging, which can involve some memory and other intellectual decline, although generally modest. A non-stimulating environment and depression can also affect cognitive functioning in elderly people. However, serious mental decline as one ages is not normal. When you spend time with Alzheimer’s patients over a period of time, the disease quality becomes obvious. There is the sense that their brains are being attacked and destroyed by a virulent disease entity — because of the marked and chilling impairment in psychological functioning that occurs.
Alzheimer’s is the most prevalent type of “dementia,” a condition that involves the deterioration of mental abilities, although other diseases can cause dementia as well. The hallmark symptom of dementia is memory loss. At the beginning stages of Alzheimer’s, people may have trouble remembering basic information such as telephone numbers or recent events. As the disease progresses, individuals cannot remember that they ate dinner five minutes ago or who important loved ones are in their lives. By the middle stages, patients appear entirely confused and disoriented. They seem to be living in a moment-to-moment vacuum, where everything is new and nothing remains.
Although memory loss and confusion are the most obvious symptoms, Alzheimer’s gradually affects other mental processes, such as the ability to solve problems or coherent speech. There can be inappropriate or dangerous behavior such as hoarding odd items, eating dirt, running off, or masturbation in public. There may be personality changes and paranoid suspiciousness, with accusations often hurled against those who are providing care. Because of the progressive destruction of brain cells, even motor movements are eventually affected. In the later stages, the person can be unresponsive, mute and motionless, unable to walk, and needing diapering and feeding.
If the individual does not succumb to other illness or accident, the destruction of the brain will get to the point that death occurs. The course of Alzheimer’s, from onset until death, may range from three to twenty years. Alzheimer’s is brutal on family members, who provide most of the caretaking — not only because of the practical aspects of the supervision required, but the tragic personal loss that never ends of someone they loved so dearly.
There is no cure for Alzheimer’s and no clear sense of what causes it. At this time, there are drugs that slightly improve the deficits temporarily or slow the progression, but only to a limited degree.
THE PERSON CONTINUES TO EXIST WITHIN…
On the outside, in terms of behavior, the Alzheimer’s patient often gets to the point of seeming to be an unruly child, an animal, or vacant shell. Family members assert that the person they knew and loved is no longer there. It is easy to see how such impressions can arise.
Yet, from working with Alzheimer’s patients for several years, I believe that the person always continues to exist within. I was fortunate to spend long hours among these patients (although I initially resisted it). I found that, no matter how confused or impaired on the surface, within is always an individual — a perceiving and feeling human being. Like all of us, people with Alzheimer’s are simply trying to adapt to the situation in which they find themselves. Basic human needs for relationship, respect, and stimulation remain. But, the person with Alzheimer’s increasingly does not have the tools to get these needs met.
At the early and middle stages of the disease, the individual may be painfully aware of the memory problems and speak of the frustration involved in trying to remain clear-headed, to engage in simple activities, to find one’s way, and to communicate with others. When they get beyond the point of awareness, individuals with Alzheimer’s are still faced with living in this constantly strange and minute-to-minute reality — without the mental or communication skills to help or even distract themselves.
Sometimes this is frightening, akin to a small child who is separated from his or her mother in a crowded mall. The repetitive, annoying questioning and obsessive behavior that is seen in so many of these patients may actually be an attempt to survive, to make sense of it all, to feel safe in a constantly changing world. At other times, or for some patients, living in the moment is not unpleasant. Like all of us, a person with Alzheimer’s can enjoy and be stimulated by music, the beauty of nature, exercise, or relating with others (even if the same sentences are repeated again and again).
The fact that there exists an emotional being within is so often overlooked in people with Alzheimer’s. In our society, we tend to assume that when the mental capacities are no longer intact, the emotional awareness is lessened or nonexistent. Yet, in my work, I noticed that the emotional life burns strong. The person may simply be unable to communicate in the usual way, which is particularly tragic in personal relationships. Contrary to the belief that these patients cannot form relationships because of their deficits, I saw over and over that they did form bonds with each other, with staff, and with myself.
I have noticed that patients are very aware of how much time is spent with them, if someone is discounting, if family members actually pay attention to them when they come to visit. I have seen individuals with Alzheimer’s develop and sustain romantic relationships. I have had patients who had deteriorated badly and did not speak, but clearly recognized my presence and wanted to “share” by holding my hand (and not just any hand would do — we had a “relationship”).
Some of my patients even learned my name or remembered things about me (such as that the bracelet I wore had been given to me by my mother). One woman who literally spent hours each day trying to find her room (and was shown the way fifty times daily) brightened when I came to visit several months after I no longer worked at the nursing home. Immediately she identified me as “that nice lady who used to come for a long time and then didn’t come for a long time.” I have had numerous patients thank me for befriending them, sometimes referring to their difficult circumstances. I have experienced genuine caring from many of the people I worked with and felt a loss in my life when they died.
In fact, I came to feel that there is great mystery in Alzheimer’s. Some of the interactions I had just did not make sense in terms of the scientific explanation of brain cell deterioration. Whatever the reality of Alzheimer’s, it is a brutal one. It is imperative that we remember, no matter how great the deterioration, a human being continues to exist within.
Provided by Judy Marshall, Ph.D.
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