How can I help my parent accept her eye disease?

A fellow caregiver asked...

My mother thinks that if she accepts her age-related eye disease it means she's given up. But I worry that without accepting it, she can't move on and learn to lead a full life despite it. Am I right? If I am, how can I convince her?

Expert Answer

Lylas Mogk, M.D. is an ophthalmologist and director of the Henry Ford Visual Rehabilitation and Research Center in Grosse Pointe and Livonia, Michigan, and the author of Macular Degeneration: The Complete Guide to Saving and Maximizing Your Sight.

We tell our patients not to give up hope for a miracle but not to wait for it. You'll want to respect your parent's feelings, but at the same time you can encourage her to explore low-vision aids (like magnifiers and talking watches) and resources (like support groups and rehabilitation training). One way to do this is to point out that using these aids and resources doesn't diminish her independence; on the contrary, it can greatly enhance her ability to be able to continue doing all the things she likes to do. (You might mention that if she doesn't find the aids helpful, or if her vision improves and she no longer needs them, she can pass them on to someone who can use them.)

Talk with your mother about how using new strategies to maintain her independence and keep up her activities is the essence of not giving up. You may be able to help her realize that staying home and discontinuing activities because of vision loss, on the other hand, is the opposite of independence. Your mother may also benefit from talking to others in a support group who've had some rehabilitation training and can share with her what it has allowed them to do.

You might also help your mother find ways to continue to contribute to the community (through volunteer opportunities, for example). And, of course, make sure that she knows she's a vital part of the family, that her family not only cares for her and wants to help her but also relies upon her wisdom, no matter what her vision. 

Two resources for helping a parent cope with vision loss are my book, Macular Degeneration: The Complete Guide to Saving and Maximizing Your Sight, which includes many patient stories that your mother may be able to relate to, and Aging and Vision Loss: A Handbook for Families (by Alberta L. Orr and Priscilla A. Rogers), which is published by the American Foundation for the Blind.