“Imagine looking at something and only seeing a dark spot”. That is what having Macular degeneration is like, reports Charlotte.
My mother has Macular Degeneration. She has had to adapt and change her lifestyle such as “giving up driving, LEARNING TO ACCEPT HELP, and ASKING for help, not taking it personally when someone does not help you, learning to do her hair differently by finding an easier style and by making people aware of what she can’t see.”
She has told me that at times, due to the loss of independence, she goes through bouts of depression, anxiety, hopelessness, helplessness, and feels like a burden to others. Mainly to my father, as he is now providing all the driving, more of the cleaning and makes most of the meals including homemade bread weekly and amazing cinnamon rolls.
She has learned to overcome these “bouts” by having certain coping skills. Charlotte states “I rely a lot on the power of prayer”; she reads her bible, reads up on the disease and learning the latest treatment options, she has joined an online support group that has not only helped her, but she has been able to help others by sharing what works for her. She listens to relaxing music and has learned to “relax” some.
Although it still comes with its struggles. She has learned that when she goes to the grocery store, she must stand right next to the shelf to see items and sometimes still has to ask someone in the aisle to help her find something. For appliances, she can use the dials more easily than the newer appliances that have the lighted backgrounds as they are harder to see. She has orange 3D dots that you can place on the dials to help with the right setting. It is harder to get dressed and color coordinate your clothes since you can’t really see the colors very well. Make up is hard- having a magnified lighted mirror helps, but she can no longer do eyebrows.
Here are some suggestions and tools that she believes to be helpful:
Having a Retinol Specialist on her team. He provided her with more detail and help than any other doctor she had seen.
Using the Amsler Grid (she has one hanging on her fridge)
Make sure that you are taking eye vitamins and wearing your sunglasses.
Having LED lights in your house. It makes things brighter and easier to see.
Using magnifiers with lights. (She has handheld ones as well as larger ones that are clamped on the tables or chairs and a floor magnifier.
Flashlights. She uses flashlights a lot when she is walking in the house, or looking for something
Colored cutting boards.
Orange dots
Pill boxes that are large and have dark colored labels on them.
Cutting gloves (Special gloves so you don’t cut your fingers when cutting up food)
Kindle, Nook, I-pad, Laptop- something that you can read on or play games that you can make your fonts large and change the color of the background in order to see the writing.
Contrasting colors. White on black. Yellow paper works well for her with black writing.
I see the struggles daily of what my mother overcomes with this disease. I think she is brave, has more strength than she knows and has been amazing at learning to adapt in order to maintain as much independence as possible. She is an inspiration to me.
For more information on Macular Degeneration visit: The National Eye Institute at
https://www.nei.nih.gov/learn-about-eye-health/eye-conditions-and-diseases/age-related-macular-degeneration
Sheri Reber is a licensed Social Service Worker, Certified Dementia Practitioner, Trainer, RCI REACH Caregiver Coach and Therapeutic Recreation Technician. She has been with the Area Agency on Aging- Five County since 2015, and has worked in the social services field in Southwest Utah since 1995.