Age-related macular degeneration (AMD) is a disease of the eye that leads to the loss of detailed “straight-ahead” vision. It can affect things like driving, reading, and recognizing faces.
AMD is the leading cause of vision loss and blindness in people over age 60. But getting it before age 50 is rare. Just 2.1% of people between 40 and 49 have it.
Because of this, diagnosis before age 60 is often quite unexpected. And it can be disruptive since visual problems can impact just about every part of life – from work, to your ability to get around and care for yourself, to relationships with important people in your life.
There’s no right or wrong way to react to an AMD diagnosis. Most people will feel a range of emotions, which some have compared to the “stages of grief,” including denial, anger, depression, and acceptance.
After you get this news, keep in mind:
You don’t necessarily have to give up your job. Most people with vision loss can make technical changes that allow them to keep working.
You can still participate fully in life. There are adjustments you can make to continue to do many of the things you love, including travel, family activities, volunteering.
You can stay independent. Tools, adjustments, and other solutions out there that can help you to do everything from safely cooking meals to getting around your home to paying your bills on your own, no matter how much of your vision is gone.
Finding Support and Building Skills
Millions of Americans live with vision loss. Help is out there! Building a support network can help make your transition to life with AMD easier. Consider joining a support group or online community. Working with a therapist can also be helpful in dealing with your feelings and making decisions.
You can also register for an independent living course that helps you adapt to everyday life with AMD. These classes walk you through everything from getting around your house to using a cane. Some organizations offer courses for family members.
Making Adjustments in the Workplace
The Americans with Disabilities Act (ADA) requires employers with 15 or more employees to offer reasonable accommodations (or workplace changes) to any employee with a disability. There are many ways to adapt your current work situation so that you may keep working. Once you are diagnosed, learn as much as you can about your prognosis and take your time making major decisions about work.
Specialists who can help
Before you talk with your boss, it’s a good idea to meet with a low-vision specialist. That’s a doctor who can suggest optical aids and other tools to help you get the most out of your vision so you can keep working safely and well. Tell the specialist about the kind of work you do and where you experience challenges.
A vocational rehabilitation counselor helps people living with disabilities find and keep work they like. Your state’s rehabilitation agency for people who have vision problems can help you find one. Your vocational rehabilitation counselor can help connect you to:
- An orientation and mobility specialist, who can help you to move safely through any environment
- Other types of vision-rehabilitation services like orientation and mobility specialists
- Assistive technologies, or software and devices that will allow you to continue to work independently. Two examples are electronic video magnifiers and screen-reading software.
Other workplace tips
- You may find it helpful to relabel items in your workplace in large print.
- Consider the lighting where you work. Can it be improved? Be sure to check for glare, too.
- Think about your regular job duties. If there are any that you can no longer do – such as driving a vehicle, moving heavy equipment, or handling potentially dangerous items – look into “job sharing.” You could trade that task with a co-worker in exchange for a different task that’s easier for you to do.
ADM Diagnosis and Your Partner
A diagnosis of AMD doesn’t affect just you. It also touches the people most important to you. One study of married couples found that spouses of people diagnosed with vision impairment had similar emotional symptoms as their partners – including depression, physical issues, and a disrupted social life. Without a doubt, both you and your partner are likely to go through a range of emotions and feel overwhelmed as you adapt your lives to this new reality. But you can both take steps to improve the situation:
Sharing emotions is important
Honest communication on the part of both partners is extremely important. The changes brought on by your AMD diagnosis may have your partner feeling a number of things usually labeled as “negative.” Maybe they’re sad or shocked or even overwhelmed. They may or may not share these emotions with you. But it’s important to communicate honestly. Keeping these feelings bottled up can lead to hard feelings or caregiver burnout. It may be helpful for your partner to talk with a professional counselor. Support groups can also improve communication and help partners deal with emotions.
Letting your partner know when you need help — and when you don’t
As your AMD goes on, more everyday household chores might fall to your partner. But it’s important to think about how giving and receiving is balanced in your relationship, especially since being dependent on someone can bring on negative feelings. Taking an independent living course designed for people with vision loss can help you better share the load with household jobs. And talking with your partner about what kind of help you need and when can help you to work together as a team.
AMD and Family
Family members of someone diagnosed with vision loss, including children, often take on aspects of care. This can cause strain as they work to balance their own needs with yours. Some families also experience financial strain when a family member takes time off to provide care.
There are resources to help family members, including support groups where they can talk about common situations they face and share resources and ways to deal with new challenges.
Team Approach
Having more people as part of your care network will help you stay more independent. These team members may include your doctors and other health care professionals as well as family, friends, and community volunteers. It may also include a vision rehabilitation therapist (VRT). VRTs can help you with essential daily activities like personal grooming, getting organized, reading, and managing your money. Family and friends may divide up the following tasks:
- Making changes to your home so it is safe
- Running errands, including taking you to appointments
- Helping with meals, cleaning, and other tasks
Prepare Now for Changes in Vision
While blindness is not a given with AMD, it’s a good idea to be ready in case your vision gets worse. Actively preparing for future changes may give you a sense of control and make the transition to vision loss a bit easier.
Organizing your home
Organizing your home for expected loss of vision can make it possible to live a better, more independent life. Independent living courses can provide you with even more tips.
- Store the items you use the most – like kitchen utensils and pans – close to where you use them. Keep heavier items on your countertops or in easy-to-reach spots.
- If you can, place items between eye and hip height so that you don’t need to bend or reach to grab them.
- Put all items back in their places when you’re finished with them.
- Focus on reorganizing areas that are especially prone to clutter, like medicine cabinets, closets, cupboards, workshop areas, bookcases, and surfaces.
Have family members let you know about any changes in your home – from big adjustments like rearranging furniture to quick changes like opening the oven door.
Advocating for yourself and involving friends and family is the best way to maintain a full, independent lifestyle.
