Living with Vision Loss
Ensure Good Care for People Who Are 'Hard of Seeing'
"Hard of hearing" is a familiar phrase and condition, but "hard of seeing" is less well-known. We tend to think people either can see or are blind, but 30 percent of Americans by age 75 suffer vision loss from macular degeneration.
Age-related macular degeneration (AMD) is a gradual, painless deterioration of the center of the retina, called the macula, which we use when we look directly at something. The macula gives us the detailed vision we need to read, for example, and recognize faces. The rest of the retina sees everything around the edges - what we see out of the corner of our eye. Macular degeneration removes the clear center but leaves the less detailed edges of our sight.
My 94-year-old father, who has very low vision from macular degeneration, recently was hospitalized for ankle surgery. On his third day in the hospital, he asked me when they would allow him to eat breakfast and lunch. I was shocked. It turned out the nurses routinely left his meal tray by his bed while he slept. When he awoke, he didn't see it, so he didn't eat. Orderlies cleared the meals away without a word.
Fortunately, it was relatively easy to fix the situation. I posted an easily readable sign above my father's bed that said, "Mr. Good has low vision. Please introduce yourself and tell him what you would like to do. Please announce meal deliveries." My father is alert and friendly, so I encouraged him to tell everyone who approached his bed that he has low vision. At first, he was surprised his nurses and doctors wouldn't realize what he could and couldn't see. However, once he understood it was important to tell them about his vision, he never missed another meal.
My father's experience is all too common. Some of my patients and their families have reported similar mishaps. Recent studies also suggest that hospitals and nursing homes often overlook low vision, even when it's written in patients' charts or records. The consequences may be more severe than missed meals.
Vision loss is usually not the admitting diagnosis on a senior's chart, so the staff will not focus on whether a patient can see well. Many seniors with vision loss don't look any different - they don't have disfigured eyes and they make normal eye contact during conversations - so the staff may not realize how little they see. Even when a senior's chart says "glaucoma" or "macular degeneration," these diagnoses alone do not adequately describe the degree of vision loss the senior may have. Some people with these conditions see quite well; others see little.
My father's experience of missing meals was difficult for him but not traumatic. There can be more serious consequences if hospital and nursing home staff interprets behaviors typical of vision loss as something else. For example, seniors with macular degeneration may not be able to recognize people who enter their room. They may initially feel lost in hallways that look alike or be unable to remember where they put an item because they can't see it. Often, seniors with vision loss become irritated when someone moves their belongings or begins a procedure without explanation because they can't see well enough to find their things or guess what's going on. All these behaviors may be interpreted as signs of cognitive decline or bad temper when vision loss is really the issue. In the worst cases, seniors with vision loss have been tied to their beds or ignored, tragically diminishing their quality of their lives.
The good news: You can take steps to help ensure that friends or family members with vision loss receive good care in hospitals or care facilities.
1) Post an easily readable sign by the senior's bed to notify the staff that he or she has vision loss and request physicians and staff members introduce themselves when approaching the bed.
2) Request that the senior's low vision, not just the diagnosis of "glaucoma" or "macular degeneration," be clearly recorded in the chart.
3) Tell the senior's care providers about his or her vision loss, including family and attending physicians, primary care nurses, nursing home counselors and facility supervisors. You may need to explain exactly what the senior can see and how to help.
4) Check the lighting in the senior's room. Since adequate light makes a big difference for people with vision loss, you may want to request stronger bulbs or add an extra desk or bedside lamp. For seniors with macular degeneration, an adjustable gooseneck lamp with an indoor flood light bulb often will make surroundings much more visible.
5) Offer access to low vision products like big-print playing cards, free magazines or Library of Congress books on tape, talking watches and clocks, magnifying lenses or a big print phone.
6) Encourage seniors to be straightforward about their vision with caregivers and staff. Coach them to say, "Please tell me who you are because it's difficult to see your face clearly," or "I'm not sure what you want to do because I can't see you clearly. Please tell me."
A colleague recently told me her mother, who has macular degeneration, had been depressed. However, when she realized many people have the same problem and continue their activities by using readily available tools and techniques, she felt she, too, could go on living fully. First, she bought big-print playing cards, a magnifying makeup mirror and a talking watch, and then she ordered some large-print checks from her bank. She felt reassured to know many more tools, including electronic reading machines, were available if she needed them. Most important, she realized her value to her friends, family, community and herself didn't depend on the quality of her eyesight.