If you have recently learned that a loved one has been diagnosed with age-related macular degeneration or AMD, you may feel overwhelmed and wonder what you need to do next. It’s true that people with AMD may have vision loss that dramatically alters their life. But even if you are put in the role of caregiver for someone with AMD, it’s important to remember that you’re not a caretaker.
Your loved one with AMD is still in charge of their life. You need to respect their boundaries. Let them tell you what they need, rather than you just assuming it for them. You don’t want to take over tasks that they can still do for themselves. This can cause stress and resentment for both of you. Instead, view it as a team situation, where you both work together to make sure that your loved one can navigate their life as independently as possible. Here are ways to provide support while allowing them to live their life.
Light up the house. If your loved one has AMD, good lighting is key. The key is to provide quality lighting without glare. Ways to do this include:
- Add floor and table lamps around rooms. You can also place clip-on lights in strategic places, like above your headboard in the bedroom.
- Use lightbulbs that are 750-1,200 lumens.
- Emphasize natural light. Use adjustable blinds or sheer curtains.
- Keep flashlights around your house. This way, they can grab one if they are in a room and need extra light.
- Pick the right lightbulbs. Halogen lightbulbs are good for overhead lighting since they provide strong, consistent light and excellent contrast between objects. LED bulbs do a good job of lighting up a specific area, so they work best for task light lamps.
- Install extra lighting. This can be in places that are hard to navigate, like stairs or hallways, as well as under cabinet lighting in the kitchen or home office.
Stock up on low-vision aids. There is no magic drug that will allow your loved one’s AMD to go away. But there are many low-vision tools available to help them continue to do day-to-day activities. You can find them at pharmacies or online. The American Macular Degeneration Foundation has a list of sites where you can buy items. These include:
- Magnifiers. They allow a person with AMD to do things like use a computer, knit, or read. They come in a range of strengths.
- Large-print reading materials. You can also find large print or voice-technology-supported dictionaries, cookbooks, and even maps. There are also e-readers and smartphones for people with low vision.
- Talking clocks, phones, radios, kitchen timers, and scales.
- Eyeglasses with high-powered lenses. These don’t just magnify what your loved one sees: They also can help reduce glare and even reposition images to make sure that they are in their visual field.
- Closed-circuit television magnifiers. This is a combination of a camera and TV screen. It magnifies images from an object like a book so that a person with AMD can read it on the screen.
- Computer software. It’s installed on their computer and converts text like emails into speech.
- Low-vision playing cards and board games.
- Audible medication reminders. There are even needle guides to help a person with AMD who also has diabetes locate and stick a needle through an insulin bottle.
Scour the house for safety hazards. You’ll want to make sure your loved one is protected from falls and other injuries. There are a few easy home adaptations to help:
- Place handrails on both sides of the stairs. Mark the stairs with different colored tape so that they are more visible.
- Remove any movable rugs or other clutter on the floor, as well as low-lying furniture like coffee and end tables.
- Install grip bars in the bathroom by the toilet and shower.
- Use non-skid mats in the shower or bathtub.
- Place nightlights around the house.
Get organized. It won’t just help you; it will help your loved one get stuff done on their own. Easy things you can do at home include:
- Use colored sticky notes to color-code household items that you use a lot, or bills and documents.
- Keep chairs and other easily movable furniture in the same place.
- Use large, numbered devices for telephones, timers, and calculators.
- Keep food and toiletry items in the same place. Keep them completely separate from cleaning products (and make sure those are properly labeled) to avoid accidental ingestion or contamination.
Stay on top of doctor appointments. If your loved one has AMD, it is very important that they see their eye doctor regularly. A 2020 study published in the journal JAMA Ophthalmology found that patients with AMD who missed just one visit experienced a worsening of their vision. You may want to create a calendar for eye doctor appointments, either on your phone or on a paper calendar. You can write down any reactions to treatments like injections, and note if vision seems to get better, worse, or stay the same. You should also keep a running list of questions to ask their eye doctor at each visit. Bring a notepad or your phone to jot down the doctor’s answers.
Encourage your loved one to lead a healthy lifestyle. If they smoke, encourage them to stop, as it’s been linked to AMD. When you cook, throw in veggies like dark leafy greens and orange and yellow peppers. They contain carotenoids, which are antioxidants that help keep your eyes healthy. Fatty fish like salmon are rich in omega-3 fatty acids, which are also important for eye health. Since UV light can cause more eye damage, make sure they wear wide-brimmed hats and UV-blocking sunglasses when outdoors.
Their eye doctor may also have recommended that they take a special vitamin supplement called the AREDS2 formulation. It contains high doses of vitamins and minerals shown to slow the progression of AMD. You can find it over the counter at most drugstores.
Research also shows that many people with AMD are less active than people without the condition. You can encourage them to continue to exercise by taking walks together on a high school track, which may be easier for them to navigate than a road. If they love to ski, suggest cross-country skiing rather than downhill. Tai chi or yoga are also good exercises that combine both muscle strengthening and balance.
Take care of yourself. Research shows that caregivers of older adults with AMD report high levels of stress. This may be because it’s hard to watch a loved one struggle to do activities they once could do easily or complain of pain from an eye injection. It’s important to take time for yourself, whether it’s going on a short walk, listening to relaxing music, or asking another family member or friend for help.