Ways to Cope with Vision Loss from Macular Degeneration: A Family Affair
I wanted to share with you something that is near and dear to my heart—how coping with vision loss is truly a “family affair.” This interview with my daughter Gwen was published in the Macular Degeneration Guide.
Fifteen years ago, when I first started having vision problems because of the wet type of MD, I thought the enjoyment in my life was over. I felt completely devastated, at least for a while, and did not feel like doing anything, even with my friends and family. I just wanted to sit in a corner and feel sorry for myself.
I was worried about Mother. She has always been a fighter, but she was really having a problem adjusting. So I started doing research to find some help and solutions.
Gwen would not take “no” for an answer. She did the “legwork” and found out about services and products that could assist me in continuing to live normally. She also figured out things she could do to help me, such as wearing light colored shoes when we were walking so that I could follow her easily, or giving me verbal cues such as counting steps aloud as we ascended or descended a staircase.
At that time, there was not as much public awareness of AMD and resources were few. Even offices of ophthalmologists did not have pamphlets or lists of resources for aids. The Internet has made searching for resources, even international ones, much easier. However it is important to remember that anything can be posted on the Internet and there is a lot of mis-information and untried treatments there also. Choose a recognized, reputable site like the Senior Site, and try the things that fit with you personally.
Today, I am a different person. I enjoy my family, I still travel, I go to the opera and plays, use a computer with speech, mentor people with vision loss at the Center on Vision Loss in Dallas, you name it. I found out that I could still enjoy almost all activities. The difference is that, for the most part, I have had to find a different way of enjoying what I did before. That is the challenge. Who does not truly enjoy finding a challenge and overcoming it? A man I once knew said that there are always answers to every problem: all you have to do is find them. My family and friends have been extremely helpful in finding those answers. The answers are found in your core strength, being willing to be open to finding solutions but understanding that those solutions may require you to do things slightly differently. The answers are found in researching the subject; talking to your doctor about available treatments; being willing to persevere with those treatments; maintaining patience with trial and error; and accepting a great deal of love and persistence from family and friends. My daughter was relentless in pushing and encouraging me. I learned from her that mistakes are expected and forgiven. Learning to be independent with courage is respected by all.
As with anything that is new to us, talking to others in the same situation is very helpful to gain insights as to what works and how to handle challenges and to anticipate future needs. It is particularly helpful to families who want to be enabling but not interfering. Most family members realize that AMD has hereditary implications so it is educational for those of us not yet experiencing vision loss to understand ways to prevent, delay and adjust to vision changes. There are agencies that serve people with vision loss throughout the country.
Today, the greatest gift that I can give my family is to continue to be independent and positive, but not to deny or delay asking for assistance as needed. Family history is one of the main risk factors of MD. My mother had MD, I have MD, and my daughters and their children are at risk as well. Knowing that my family sees how I try to handle this challenge gives me even more incentive and courage. Our friends and family need to know that if they experience vision loss, life is not over. We can cope and continue to enjoy a very full and productive life.
So family members: if your mother or father is experiencing vision loss, be there for them. Do not coddle them but do the research and be aware of what your parent is experiencing and what you can do to help. Find services that are available in your community and get some commonsense solutions to doing everyday tasks. Be patient but tough and understanding.