A Hard Act to Follow: My Mother's Journey

When my mother was in her mid-sixties she noticed problems with her vision and went to the best eye specialist she could find. He told her that she had dry macular degeneration and that it was too late to do anything about it.

This was 30 years ago, and I’m not sure what the doctor could have done about it anyway. He mentioned something about a laser, but laser treatment, even today, is still being evaluated.

Difficult to find information back then

It was a shock to the whole family, and it was difficult to find any information, as this was before the internet and the world-wide-web, and information was hard to come by. In those days, people (especially older people) tended not to ask their doctors too many questions, as they didn’t want to bother them. Macular degeneration wasn’t as understood as it is now, as people tended to think that declining vision was just a factor of aging. 

My mother was especially saddened by the statement that she had left it too late. As more information became available, we learned that this condition could have a hereditary component, and I could be at risk of developing the same disease in due course.

My mother became my role model

But back to my mother. After this initial shock, life continued as normal for quite a few years. She found an eye specialist closer to home, and I went with her to appointments. We learned to ask a few more questions, and it became clear that those early laser treatments for dry macular degeneration had mixed results and this form of treatment wouldn’t necessarily have improved her outcomes.

My mother carried on managing as best she could with no complaints. As I quietly watched her, she became my role model for coping with a disease which in the future could affect me, and it now has.

Managed the household despite being legally blind

She cooked for herself and my father until she was 90. Although she was legally blind, she managed her household with only a couple of hours per week home care assistance. The fact that my father could still drive was a great help. Dad was a little forgetful but his sight was fine. Mum couldn’t see very well, but she was sharp as a tack. Together they functioned just fine!

Difficulties recognizing people

One of my mother’s main difficulties was recognizing people as they approached her. So whenever she went down to her local club for dinner she would always try to sit at the same table. Then people could come up to her and say hello. After a while her friends realized that it helped if they said something like, “Hello, it’s Susan here”. 

Another problem was walking across wide rooms, especially if they had patterned carpets, so once again she chose carefully where she would walk and sit.

The challenge of electronic appliances

Using electronic appliances was also a challenge – the old ones with dials you turned were much easier than the new ones where you had to tap a keypad and program them. We put little bumpy stickers on the most important keys and tried to keep everything so she only had to press “Start”.

She did have difficulties in a few areas, but it was hard to help her because she never complained or asked for help. You had to watch her carefully to detect where she was having a problem. Then she always accepted assistance with grace.

The life lesson my mother taught me

So, what did my mother teach me in regard to macular degeneration? She showed me how to go on living a happy and fulfilled life, even with low vision. I’ve never heard her say, “Why me?” She kept all her friends, in fact she even made new friends who admired her, as well as enjoyed her company.

Many people she meets today, in residential care with my dad, are surprised when they hear she is legally blind. Just last week a doctor commented to me, “What a delightful mother you have!”

Times change, but a good example will always remain inspirational.

Editor's Note: As of August 2023, 2 drugs known as complement inhibitors — Syfovre® and Izervay™ — have been approved by the US Food and Drug Administration (FDA) to treat the advanced stage of dry age-related macular degeneration, or geographic atrophy (GA).