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As a caregiver for someone with wet macular degeneration, your support is critical to helping your friend, spouse or family member cope with this chronic, progressive condition.
Here is a checklist you can use and adapt for medical appointments and daily tasks, and for working with your friend/spouse’s broader eye care team.
Accompanying the person you are caring for to medical appointments consistently is an important step. You can provide comfort and security, and ensure they understand treatment options and instructions for how to monitor their condition. Helping them remember and attend all treatment appointments is crucial for slowing the progression of wet macular degeneration.
To do list: Create and update a calendar for eye doctor appointments. Each person reacts differently to treatment, and appointments may come at changing intervals. If your patient sees several doctors for different conditions, make sure eye doctor appointments are included on any master calendars.
--Keep a list of questions to ask eye care professionals during visits, and write down the answers for easy reference after you leave the doctor’s office. Click here for a list of questions to ask the eye doctor.
--Create a regular process for helping your friend or loved one monitor the progression of wet macular degeneration between visits. Click here for more information about monitoring wet macular degeneration.
For people with wet macular degeneration, help with transportation is high on the priority list. As a caregiver, you can create a network of friends, family, and social service organizations who can drive your friend or loved one, or accompany them on public transportation to destinations that include the eye doctor’s office, supermarket or lunch with friends and on activities that include walks or hikes.
To do list: Create a list of friends and family who are willing to help with transportation duties. Ask your doctor’s office to recommend local organizations that offer transportation support.
In the Home3
The home can become an obstacle course for people with impaired vision. But there are some small changes you can make that will have a major impact on safety. Two simple suggestions: for better visibility, line the edges of stairs with brightly colored tape and paint electrical outlets in a contrasting color.
To do list: Click here to read our article on tips for keeping the home safe.
Encourage healthy eating and regular exercise. Setting and participating in health-related goals, such as taking walks together, can have a positive impact on day-to-day wellbeing.
To do list: Click here to read our article on healthy living with wet macular degeneration.
Financial and Medical Paperwork
Caregivers are often asked to help patients keep their financial and medical documents up to date, including balancing budgets and filing medical forms.
To do list: Make a list of what needs to be done, including key payment dates for bills and taxes, and the creation and upkeep of file folders for medical records. Create a weekly or monthly plan for tackling the paperwork.
The Back-up Plan
Caregiving is demanding work, especially for those who are still raising their own families and/or who work full-time. You will need to take breaks and prepare for emergencies.
To do list: Create a network of people and organizations who can assist you with caregiving, including family, friends, paid health aides and volunteers from social service organizations.
Click here for more considerations and suggestions for how to look after your own health.
1 Wykoff CC, Clark WL, Nielsen JS, et al., Optimizing Anti-VEGF Treatment Outcomes for Patients with Neovascular Age-Related Macular Degeneration. Journal of Managed Care and Specialty Pharmacy. 2018;24(2-a)S3-S15.
2 Holz FG, Schmitz-Valckenberg S, and Fleckenstein M. Recent developments in the treatment of age-related macular degeneration. J Clin Invest. 2014;124:1430-8.
3 National Institute of Building Sciences Low Vision Design Program. Design Guidelines for the Visual Environment. https://cdn.ymaws.com/www.nibs.org/resource/resmgr/LVDC/LVDP_Guidelines_052815.pdf. 2015. Accessed July 2019.