By Nicholas Pott, MD
Alzheimer's disease brings a slow but remorseless decline; it diminishes the capacity to lay down memories, to convert ongoing experiences into images which can be recalled and used…The patient cannot conjure up the reply to a recent question, the whereabouts of keys or glasses, the mental picture of the task he had just performed. Let's see how this confusion affects the patient and, as a result, those closest to him.
In the early stages of the disease the patient can remember how easy the routines of life used to be compared to the blunders and difficulties of the present. This easily leads to sullenness and withdrawal, or to irritation and short temper. The disease often erodes his capacity to tolerate frustration, anxiety and loss of self esteem. He gets angry more easily and this is usually projected onto the person who is closest and most familiar, often a spouse, a partner or an adult child.
Unlike many illnesses, in the early stages there are not easily observed signs that something is changing; there is no paralysis, blindness, fever or cough. The family may assume that the changes in personality are something which the patient chooses to adopt. Even when the diagnosis has been made, it is hard not to take personally the patient's forgetfulness, his blunders or his affronts and blame-placing. A close and loving relationship can easily become frayed.
The gradual decrease of capacity to cope with routine tasks is inexorable; the rate and order of the losses will vary greatly. Some patients may easily hand over the many personal decisions and activities of the day, while others will doggedly persist, as even simple tasks become more and more challenging. Much depends on the patients life-long personality style, the balance between "do it yourself" and delegating to others. Much depends on the past relationship with the caregiver. When there has always been trust and affection, and when shame or guilt have not been prominent, it will probably be easier to hand over activities in which the patient is most invested.
As the patient becomes more forgetful and less aware of danger, he may unknowingly put himself at risk. He may forget a cooking pot on the stove, or wander obliviously into traffic. His response to redirection may be like that of a stubborn child, unable to comprehend the reason for the warnings and the prohibitions. At this point the caregiver must be continually vigilant, always ready to move to avoid a dangerous situation. This can be exhausting, physically and emotionally draining, with the constant reminders and the sadness of seeing a loved one so depleted, so far from the person he used to be.
Perhaps he can no longer manage the complexities of controlling a vehicle, but can see no reason to give up the independence and mobility of driving himself on familiar roads. Often this brings a crisis, and sometimes the help of a doctor is needed to invalidate his license.
Sometimes there is a poignant stage when the patient no longer recognizes his surroundings as familiar. He may believe that he has been moved to someone else's house or even that his caregiver, perhaps his wife, has been supplanted by an imposter. In this confusion, it is a small step to paranoia, to the belief that others are trying to trick or confuse him for some malevolent purpose. Now the patient and his caregiver are at odds; fear, recriminations and hostility are all too common.
Alzheimer's is a tragedy- for the patient until the disease progresses to the point where he is no longer aware of what he has lost, and for the caregiver, right through to the end. And it is a drawn out decline; the average span from diagnosis to death is seven years. However, the psychological pain is not continuous, and there can be sharing of simple pleasures. Distant memories are better retained than recent ones, so patient and caregiver can reminisce, perhaps helped by family photographs. Often the patient can take pleasure in walking or listening to music, eating a good meal or visits from friends and relatives.
(Photo of Harriet Butler with her Mom, Katherine, celebrating her birthday at the nursing home. Katherine lost her battle with Alzheimer's on June 9th, 2006.)
As the patient becomes less able to look after himself, others must take over more of the care. It is the reverse of taking care of a child where each month he can do more for himself, and the parents can proudly hand over the tasks of feeding, sitting up, moving around, dressing, watching out for danger… With Alzheimer's these same abilities are slowly lost until at the end the patient is like a new born infant.
Philosophically one can take a viewpoint outside the process and reflect on the stages of the life cycle, with the final stage cruelly extended. For the caregiver, immersed in the day to day situation, it is never easy, Verbal communication is no more, though comforting sounds and a gentle touch can still make a difference to the quality of life. Memories and independence have slipped away from the patient while for the caregiver the humanity they share can be a source of strength and sustenance.
As Emily Dickinson wrote:
Love is anterior to life,
Posterior to death,
Initial of creation, and
The exponent of breath.