by Oscar E V Fernando
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Alzheimer’s desease and Caregivers
With advancement of civilization, science and technology, problems of ageing too seem to have developed! Several causes may be attributed to this, but here we shall deal with one of the dreaded problems, Alzheimer’s disease (AD). Ageing is an unstoppable journey leading to the second childhood and eventually infancy. Ad has expedited this process for some. But we have on medical advice that with proper health care, timely observation and preventive measures the aged can be less of a burden to family and society with onset of AD.
Forgetfulness in old age is common to all humanity. But with AD it is a sickness. The name has its derivation from Dr. Alois Alzheimer, a German doctor who in 1906, noticed changes in the brain tissue of a woman who had died of an unusual mental illness. The rest is medical study and its jargon that can be safely left to the world of medicine.
Stating broadly, AD is a frightening and debilitating illness that is characterized by “confusion, memory failure, disorientation, restlessness, amnesia, speech disturbances, inability to carry out purposeful movements, and hallucinations” (Mosby’s Medical, Nursing and Allied Heath Dictionary)”
The symptoms can best be exemplified with an excerpt from “The 36-Hour Day”, a book for families and caregivers of people with (AD).
“Often, Mary was afraid, a nameless, shapeless fear. Her impaired mind could not put a name or an explanation to her fear. People came, memories came, and then they slipped away. She could not tell what was real and what was not. The bathroom was not where it was yesterday. Dressing became an insurmountable ordeal....Mary gradually lost the ability to make sense out of what her eyes and ears told her....She worried about her things: a chair, and the china that had belonged to her mother. They said they had told her over and over, but she could not remember where her things had gone. Perhaps someone had stolen them. She had lost so much.... Mary was glad when her family came to visit. Sometimes she remembered their names; more often she did not. She never remembered that they had come last week, so she regularly scolded them for abandoning her....She was glad when they didn't try to remind her of what she had just said or that they had come last week, or ask her if she remembered this person or that one. She liked it best when they just held her and loved her”
“Although the risk of it developing increases with age, in most people symptoms first appear after age 60 and it is found that AD rapidly increases between the ages 65 and 85. Medical science is still in the quest of finding its causes. That AD is not a part of normal aging is concluded with the knowledge that, in the absence of disease, the human brain often can function well into the tenth decade of life” says medical researches.
People today are often puzzled about various terms used in the field of forgetfulness. Dementia is a term used to describe a range of illnesses that affect a person's ability to think, to reason and to remember. Although AD is the most common form of dementia that can effect elders, it can also effect people in their forties or even younger. The term amnesia has been medically defined as the inability to recall an event which has ended, and the patient thereafter returning to normal self and is said to be common among those who are tensed, anxious and trying to have too many irons in the fire, whatever be the age.
By taking treatment it is researched that although AD cannot be cured, at least it can be slowed down. In the question of life of an AD patient, it may be asked whether it is mere existence, with total custodian care, or with early detection and preventive treatment a patient’s quality of life is sustained to make it easier for the patient and the care givers who are hard to find in this busy world of hectic activity!
It has been researched that AD is probably, the only illness that can truly be described as being the opposite of birth. Brain begins shrinking as the disease progresses, and the layers of learning are stripped away in much the same order in which they were laid on from birth. At death, the brain resembles that of a newborn infant. This implies that family members and care givers have to be mindful that up to the point of reaching this stage, the patient responds to love, touch emotion and the care givers’ sympathetic understanding similar to the responses of a new born infant!
With the onset of age should we not be alert to keep our minds occupied to ensure there are no mental and physical atrophies that may trigger such diseases as AD? Should not the family members too make discreet observations for their own sake as well as for the sake of their dear ones?
It is said that caring for an AD patient at home can be very demanding both physically and emotionally - it can make one feel lonely. Each day brings new challenges as the caregiver copes with changing levels of ability and new patterns of behavior. Much compassion, will power, adjustments and adaptations may be necessary in the long run. It implies caring for the patient’s general health, keeping an eye on his/her daily activities, avoiding risk of injuries, preventing infections, drug and recreation management and doing all this with much love and care. As the disease gets worse and caring at home becomes increasingly difficult, family members will face difficult decisions about long-term care.
Research has found that the worst that can happen to an AD patient is to be put away from the home environment. With no love and attention the disease could be worsened. But on pragmatic terms in a poor country such as ours, family caregivers will be hard to find as they will not be able to cope with the attention needed, and at the same time be gainfully employed and tend to their own families. These are matters that our civil society will have to deal with in addition to providing homes for the aged and other elderly care.
Would it surprise readers to know that a caregiver must first cultivate loving oneself before being capable of loving and caring for another person, according to a book on instructions to care givers? Does it connote self-esteem? Does it also not echo the Second Commandment given to Moses several millennia ago “To Love thy neighbor as thyself’.
For more information about AD, the American Kansas Department on Aging has published “A Guide for Alzheimer’s disease and Related Disorders”
Oscar E V Fernando
1st October 2004
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I frequently refer to the 36-Hour Book because my mother and my dad have the Alzheimer's disease. You have touched on a few matters in this book. The Alzheimer's Association recommended this book to me, and I hold it close when another drama takes place---so frequently the case while being a caregiver.