The Macula Vision Helper
The macula vision helper may be a friend, a relative, a wife or husband. It is one of the most significant relationships you’ll have and needs to be with a person who is willing to learn what macula vision loss is for you. This person will be a valued and appreciated helper assisting you in maintaining your independence.
I have discovered that people, who have not experienced macula vision loss, have difficulty grasping what it is like. One of my friends went about her home blindfolded in an effort to understand how such a loss must feel. Bless her effort. That exercise, of course, does not simulate macula vision loss as it differs from total blindness. It was when my retinologist told me I would never be in the dark, that for the first time, I felt a sense of relief. Only then did I realize I would be able to manage my life.
Those of us with impaired vision require a specialized kind of assistance. Unlike most care-giving, we often need to have the assistance of a sighted person to locate an item on the desk that is lost to us or the sweater in the closet that we know is there, but cannot find. A sighted person can also help one to learn a new way to complete a task that used to be automatic. Some of these needs can be met by classes and visual devices now available. Many of our needs, however, require another person’s visual assistance.
THE NEED FOR COMMUNICATION
One of the significant difficulties faced by any macula vision helper is to know what the visually impaired person can or cannot see. Each of us with macular degeneration sees our environment somewhat differently. Also, our sight varies from time to time depending upon health factors. For example, when my blood pressure is high, my macula vision declines. It is necessary for you and for me to describe for our helpers and friends what we can or cannot see when this is relevant to our functioning together. This is our responsibility.
Long standing habits may vary significantly between people who are trying to work together. For example, when I used to grocery shop, I enjoyed leisurely strolling down the aisles looking for new products that might be of interest to me. However, my visual helper views grocery shopping as a task to be completed rapidly and efficiently. To alleviate tensions over any differences in style it is important to discuss, preferably with humor, the fact that such differences exist. As a result both parties become more aware and my helper tends to slow down as I speed up. In this way we both find satisfaction.
Visual helpers devote considerable time to helping us. For example, my helper does all my driving, including medical and dental appointments in which she must spend considerable time in waiting rooms. She takes me to functions that I wish to attend, collects my friends from the airport and provides me with many other blocks of her time. All these activities are to meet my needs. In my search for ways to make such experiences positive ones, from her perspective, I have learned that she appreciates humor and visits that are positive and pleasant in tone. When I ask for her help, she appreciates the fact that I have tried to accomplish the task myself first. I try to fit my appointments with her schedule of activities and to show appreciation for her assistance in every way I can. This communication is both verbal as well as nonverbal and is important to me and also to her.
THE PROBLEMS OF ROLE REVERSAL
Role reversal may occur in a marital relationship when the wife develops macular degeneration. In such situations, the husband may become the visual helper and assume some of the tasks previously carried out by his wife. This may create some tension between them. For example, a friend with macular degeneration sent her husband to cooking classes. This was a man who had been a Navy Commander and later successful as a legal expert. He dutifully attended all the classes, but when finished, he could not identify a head of cabbage from a head of lettuce. Obviously it is not wise to request a helper to do either what he cannot do or wishes not to do. If discussion is not an option, then a better solution might be to simplify one’s cooking, and possibly ask a woman friend to help you clear out the kitchen cupboards of utensils not required for the simpler cooking that you can do.
WHOSE NEEDS TAKE PRECEDENCE?
Visual helpers, as with other types of caregivers, are people who are able to place the needs of another person before their own. This is extremely difficult as each of us is driven to satisfy our own needs. It is this process that motivates our behavior as well as the behavior of the person helping us. It requires helpers to put their needs on hold while working with visually impaired person to identify needs for visual help. At the same time it is important for the person with macula vision loss to realize that a visual helper needs appreciation clearly expressed.
ATTITUDES
Friends and helpers tend to avoid people who present negative attitudes, excessive complaining, or various forms of the “poor-me-syndrome” Sure, macula vision loss is a terrible burden, but we cannot change it. I sometimes feel so frustrated I throw things across the room, in private. Because we can’t change it, our task is to make it as bearable as possible by focusing on positive thoughts with others and within ourselves. Humor is a wonderful tool that can help us in this effort and will help you and me to feel a lot better. This article is dedicated to my friend and macula vision helper, Janet L. Wuori. Her role in my life has helped me to better understand the essential relationship between a visually impaired person and the sighted helper.
Betty Mathews is Professor Emeritus, Behavior and Health Education, University of Washington. She is 88 years old, lives alone and maintains her home and cooks for herself and Sasi, a Toy Poodle.
© by Betty Mathews, DrPH 2007