A new handbook aims to provide answers for the questions of persons with age-related vision loss and their family members, maximizing peace of mind and life quality.

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hen older persons experience vision loss, neither they nor their family members typically know what to do or where to turn for help. Help is needed by both the older person and his/or her family members for the emotional impact of age-related vision loss as well as its functional limitations. An older person may think, “How do I go about my daily routine? I may have to give up my home and my independence.” A son may think, “How will my father be safe living alone when his vision is so impaired by macular degeneration? How will he be able to prepare meals? He won’t be able to drive anymore. He’ll no longer be able to take his daily walk through the neighborhood. I can imagine him just sitting and staring hour upon end.”
       A daughter wonders about her mother’s newly diagnosed glaucoma. “How will she get around, since glaucoma impairs mobility so much? We’ll need to consider alternative housing arrangements—maybe the assisted living facility near our family’s house? She’ll need care. Or we could consider taking her in to live with us. We have the room, and so many of our friends have become caregivers to their parents. It’s just one of those things that happens now that people live longer and longer in American society.”
       These are typical reactions by both the older visually impaired person and adult children in relation to a parent’s loss of vision. Vision loss is one of the most feared conditions. It is frequently thought to be the end of productive activity and quality of life. It is important for families and their parents or other older relatives to know that there is a whole service-delivery system set up to provide vision rehabilitation to elders like those described above. There are also resources to help adult children cope and adjust to the loss, including community-based support groups. The groups represent places to go to meet other adult children struggling with their parents under similar circumstances and coping with some of the same fears and frustrations and anger and/or denial while trying to help their parents carry out their daily activities. Support groups are also available for older visually impaired persons.
       For these reasons, we felt a tremendous need to develop a book, Aging and Vision Loss: a Handbook for Families, to give family members a knowledge base and set of skills to help their older relative maintain or regain a level of independence that will ensure quality of life for everyone. It is important to realize that there is no need for an adult child to be a “caregiver” because an older person who is only visually impaired does not normally need care; he or she needs to learn new skills and operationalize them in order to regain a sense of self-confidence and self-reliance. Caregiving is not usually necessary unless there are compounding physical disabilities or severe health conditions.

The Book on Vision Loss

       Aging and Vision Loss: a Handbook for Families (published in June 2006 by AFB Press, the publishing arm of the American Foundation for the Blind) is full of concrete suggestions, tips, and techniques and addresses the following issues:
• Recognizing signs of vision loss
• Emotional reactions to vision loss
• Family dynamics: on the road to adjustment
• Finding professional help
• A new approach to everyday tasks
• A home that supports independence
• Vision loss and other health conditions
• Support from friends and community
• Enjoying leisure activities
• Frequently asked questions and answers
• Available resources.
       The book starts by providing some of the following first steps for family members getting started on the road to understanding vision loss, learning about existing services, and beginning to adjust:
       1. Be aware of symptoms of vision loss, such as reports of blurring or double vision; flashes of lights or halos around lights; signs of reducing of stopping normal activities; and problems getting around unfamiliar places. If the older person has some of these symptoms, chances are he or she has one of the leading causes of age-related vision loss—macular degeneration, glaucoma, diabetic retinopathy, or complicated cataracts. Or, if the person has had a stroke, he or she may be experiencing hemianopsia (ie, loss of vision on one half of the visual field).
       2. Understand that there are some normal changes in vision as we all age, but that the signs above should alert us to more serious problems.
       3. Speak directly to your older relative. Do not be afraid to talk about the vision loss—do not ignore it. Find the right time to broach the subject about the resources you find out about, and introduce them gradually to your parent as possibilities for learning how to do routine tasks by learning adaptive techniques from vision rehabilitation professionals.
       4. Make sure your older relative sees an eye care specialist, such as an optometrist or ophthalmologist—preferably an ophthalmologist, initially. Then, if not referred, ask the eye care specialist for a referral to a low-vision specialist who can help your parent make use of optical devices, such as magnifiers or telescopes. Do not buy magnifiers in the drug store or order them from a catalog. Let the low-vision specialist explore several different devices with your parent and make the most suitable selection. Our handbook tells family members and their parents which questions to ask the eye care specialist and stresses the importance of preparing the list before going to the appointment so that they can make the best use of their time.
       5. Find out about a vision rehabilitation agency near you. There are both state and private rehabilitation agencies that provide training on the independent living skills by a vision rehabilitation therapist (or rehabilitation teacher) who knows all about the adaptive techniques.

Easing the Emotional Effects

       The handbook also describes some of the emotional issues that people experience, as discussed in the beginning of this article, explaining the fact that while they are difficult to deal with, they are normal reactions. Once vision rehabilitation services are started and the parent and adult children realize that it is still possible to cook safely by learning safe adaptive techniques, some of the grief and despair about vision loss will begin to disappear or at least diminish. One family member writes, “My mother became extremely depressed and even suicidal at the onset of vision loss. The rehabilitation center helped by teaching skills and keeping me busy.”
       The handbook details and illustrates a number of the adaptive devices available for persons who are blind or visually impaired. They can be ordered from special independent living catalogs, and agencies are often able to make them available to older people who cannot afford them. There are large-print items, such as watchers, timers, and thermostats, as well items that speak, including talking alarm clocks that the visually impaired person can set independently. There are also devices to help manage medications.
       The handbook also addresses the many minor adaptations that can be made to make the environment more functional and help a parent remain at home. These include ideas like introducing color contrast into the environment to make items easier to see. Upon investigation, the adult child may also find that there is not sufficient lighting in a room or that lighting may need to be adjusted to make it easier for the older parent to read a book.
       The reduction of glare within an environment can also make a major difference. Glare from sunlight or artificial light may be reflected by highly polished floors or a glass tabletop, and glare on the television screen may make it impossible to see. Turning the television against the light may make it easier to see. A tablecloth can eliminate glare on a shiny tabletop; eliminating high-gloss floor cleaners can make it easier to see to move about. The handbook includes an environmental checklist so that the parent and adult child can go through the home and identify any obstacles to moving about independently and start making minor changes. It need not be costly to adapt an environment.

Conclusion

       It is important to recognize that not all older persons can learn to do all the daily living skills independently. Sometimes the older person may still need assistance, but the key message of the entire handbook is that the adult child does not need to jump in and do everything for his or her parent. This will only make the parent more dependent. Instead, the adult child should utilize the resources that exist to help the older parent with adjusting to a new way of life and then provide any additional assistance that may be needed.
       Aging and Vision Loss: a Handbook for Families is designed to uplift by informing, mobilize by the increasing the knowledge that emotional reactions that occur as a result of vision loss are normal and can be overcome, and empower by revealing what the resources are and how to get access to them.

       For more information on Aging and Vision Loss: a Handbook for Families and/or to order a copy, visit the bookstore at www.afb.org.