Caring for Someone with Macular Degeneration
Macular degeneration is a chronic, progressive disease that can have far-reaching effects on a person’s life. In addition to needing assistance with daily activities, individuals with macular degeneration might also experience social isolation and depression due to declining vision, activity level, and quality of life. Both social and practical support are important, and here are some ways that you can start to make a positive impact.
Understanding the person
Each person with macular degeneration will have varying degrees of vision impairment. Ask your friend or loved one whether they need any assistance, what they might need help with, and how much help they need. Don’t assume anything; some people might find it hard to ask for help or not need much assistance, so it’s always best to ask first. Also, many people can see better at different times throughout the day, so what they need might change over the course of the day.1
Being diagnosed with a chronic condition can provoke lots of feelings, including feelings of grief, which includes denial and anger.2 Letting the individual know that you’re there for them if they want to talk, and being understanding of their emotional adjustment can be helpful.
Some days can be harder than others, and their emotions will likely fluctuate as the condition progresses. Check in with them, don’t assume they’re doing fine just because they haven’t said anything, and continue to reach out to them, just as you always have. Even though they now have a diagnosis of macular degeneration, they’re still the same person they have always been.
Providing and finding support
If they’re open to it, help them find a local support group for individuals with macular degeneration or visual impairment. Social support, especially among people who are facing similar issues, can be valuable and can also help them find new resources that might be helpful to them. If there is no local support group, a local therapist might be helpful. There are also lots of online support groups and forums; if they’re able to use the computer, this might be something positive for them.
If your friend or loved one is interested, talk with him or her about the various rehabilitation services and support groups available to them: occupational therapists, low-vision rehabilitation services, local assistance, support groups (both virtual and in-person), and counseling or social work services. They might not be open to it initially, and that’s okay. You can provide encouragement, but remember that it’s their decision, and reassure them that you’ll support them either way. If possible, get involved with rehabilitation skills training and learn how to physically and practically support your friend or loved one.
Medical appointments and errands
Make sure they have regular eye exams by an ophthalmologist and be aware of any other medical appointments they might have. Offer to drive them to appointments or accompany them on errands, and if they say no, just let them know you’re there if they need you.
Making home adaptations
Help them arrange their living space in ways that encourage independence and ease of living. Tape down or remove throw rugs, add hand rails where necessary, move and secure electrical cords, and rearrange furniture away from high-traffic areas.3 Encouraging independence is important.
What can you do?
To support someone with macular degeneration, one of the best things you can do is be there for the person. Ask them what they need, and listen to them. Assist them with daily activities and remember that they’re the same person they have always been; they are just now dealing with a chronic eye condition and some level of visual impairment.