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Learning that you have a chronic, degenerative condition like wet macular degeneration isn’t easy to accept. Most people say they experience emotions after diagnosis that range broadly from anger to acceptance.
No matter where you are in your journey, you can find comfort, control and independence by planning for ways to best live with impaired vision. For many people, this starts with building or expanding a support network.
It is important to remember that you aren’t alone. Wet macular degeneration is the leading cause of severe vision loss and legal blindness in people over the age of 65 in North America, Europe, Australia and Asia.1 Globally, age-related macular degeneration ranks third as a cause of blindness after cataract and glaucoma.2
Here are some steps recommended by people living with wet macular degeneration for building a group of friends, family, colleagues and public or private organizations who can help with daily and longer-term needs.
1. Go public with your diagnosis. While your initial instinct may be to shield family and friends from the news, the best way to get the support you need is to be honest about your condition. If you are employed outside the home, talk to your employer or seek advice from local advocacy groups about any special accommodations you might need, like those you may use in the home.
2. Understand your needs. Before you start recruiting your network, make a list of all the tasks where you think you will need help. These may include transportation to doctors’ appointments and weekly trips to the supermarket, monthly bill paying, or help with the caregiving responsibilities for a relative or friend that you have been taking on. Also, consider your emotional needs. For example, you might find it boosts your spirits to get a daily check-in call from a caregiver or to line up friends to accompany you on regular walks through the neighborhood.
3. Create a budget for care. Once you have a list of the tasks, put together a monthly budget to understand which support services you might wish to pay for, e.g., taxis to the doctor or a monthly visit from a housecleaner, versus those where you’ll ask a friend or family member to help provide, e.g., help organizing bills or buying plants for the garden.
4. Recruit your network. Speak with friends, relatives and neighbors to ask for their support and recommendations. Be as specific as possible describing the tasks you need help with and how frequently you will need them.
5. Document the help you can expect. Create a spreadsheet, calendar or a handwritten list showing which caregivers are helping and when. Print their names and contact information in large, legible print and keep it handy. You should also ask your caregivers if you can share their contact information with the other individuals in your support network. One easy way to do this is with a group email list, or group text message.
6. Additional support sources. Ask your doctor’s office about local groups that provide services to wet macular degeneration patients and contact them.
Don’t be afraid to ask for help. Offering support to someone with wet macular degeneration can be highly rewarding. Together, you and your support team will learn the best ways to live with changing vision.
1 Schmidt-Erfurth U, et al. Guidelines for the management of neovascular age-related macular degeneration by the European Society of Retina Specialists (EURETINA). Br J Ophthalmol. 2014;98:1144-1167.
2 Prevention of Blindness and Visual Impairment. WHO website. Available at: http://www.who.int/blindness/causes/priority/en/index7.html. Accessed July 2019.