What Family Members Need to Know about Vision Loss and Its Impact
by Sylvia Stinson-Perez, MSU, VRT, Director of MSU, OIB-TAC
Vision Loss Impacts Everyone in the Family
Vision loss is a family matter. It not only impacts the individual with the diagnosed visual impairment, but it impacts their family and social network. The person with the visual impairment experiences varying degrees of functional implications based on the severity of vision impairment. Loved ones, especially those who live with the person experiencing vision loss and those who step in to provide assistance, are also significantly impacted. This article shares information on some of the most common ways an individual and their loved ones will be affected by vision loss. In addition, you will find information on how to promote adjustment and coping effectively with vision loss and some practical tips. Loved ones truly play a key role in the development of self-advocacy and adaptive living skills.
Signs of Vision Loss
Have you noticed any of the signs of visual impairment in yourself or a loved one?
- Misplacing everyday items such as the phone, television remote control, or eyeglasses
- Wearing mismatched or stained clothing
- Spilling liquids
- Pushing food off the plate when eating
- Struggling to recognize people
- Bumping into things or people
- Squinting to read
- Calling the wrong telephone number often
- Signing signatures off the line or too big
- Signing off the line and extra big
These signs can often be mistaken for forgetfulness or even dementia. However, it could be vision loss. Many eye conditions, including macular degeneration, glaucoma, and diabetic retinopathy, cause varying degrees of visual impairment and may initially impact just a few areas of a person’s life.
It can be very confusing because a person with one of these conditions may have no difficulty doing one task while having extreme difficulty doing another. It is all about the type and severity of the eye condition. For example, a person with macular degeneration may not recognize a family member but can pick up a safety pin off the floor, because their condition causes central vision impairment that may obscure faces.
Get a Diagnosis
If you suspect you or a loved one has a visual impairment, it is important to see an ophthalmologist for a thorough dilated exam for a diagnosis. Although promotion of independence and self-advocacy skills are strongly recommended, it will be beneficial for a loved one to attend the first ophthalmology appointment to learn about the eye condition and what to expect. This first appointment can often be stressful for all, so being there to help ask the right questions and get accurate information is essential.
Understand the Impact
The diagnosis and experience of vision loss is a major loss in life, and most individuals go through a process of grieving their vision loss and all that is associated with it. Loved ones also need to be aware of the loss they feel due to the diagnosis. See the article “Emotional Adjustment to Vision Loss: It’s a Family Matter.” (link)
Once you have a diagnosis, the next steps are to learn about the condition, its functional implications, and how it will impact your independence and safety. Vision impairments vary widely. Understanding what someone sees and what they cannot see and how that affects their everyday functioning can be very helpful. The only way to understand this is to ask. However, it is crucial to ask in a supportive way that demonstrates a genuine intention of understanding. Also, realize that vision can vary from day to day and sometimes minute to minute. It is impacted by how one feels physically, how much rest they had, illnesses, and lighting conditions. And, yes, it can be very confusing. You might be surprised that your loved one can see one thing and not another. It is just as disturbing for them.
Provide Appropriate Assistance
Everyone’s inclination when they see someone struggling, especially someone they love, is to help. They want to make sure the person is safe above anything else.More assistance may be needed early on, but as an individual adjusts and learns techniques to cope with and live with vision impairment effectively, less help may be needed and promoting interdependence is appropriate.
Independence is attempting to do everything on your own and never asking for help, while interdependence recognizes that none of us can do everything on our own. Interdependence acknowledges that we all have strengths and that we all also have limitations and need others’ support sometimes. Identifying and building on areas in which one with a visual impairment can complete a task safely and independently is vital to the adjustment and coping process to maintain independent living with vision loss. Identifying areas where help and support are needed is equally as important.
Without vision rehabilitation training or proper tools and equipment some tasks may be difficult to accomplish with low vision. Figuring out where help is needed is as important as finding out where help is not needed. As a person learns to cope with and learns adaptive strategies, it’s likely they will need less help. The loved one can support independence while also being aware that support in some areas will continue to be very appreciated. For example, a person who is visually impaired may be able to use public transportation to get to the store and use customer service in the store to help shop, but it is a lot easier and less stressful if a friend or family member provides transpiration and helps in the store.
Help Is Available
A person with a visual impairment, even one with total blindness, can learn adaptive techniques to live alone, cook, keep their home clean, use a computer and phone, travel independently, and work. Unfortunately, many individuals end up going into assisted living facilities prematurely, expecting that help will be available. Most assisted living facilities do not have the knowledge or experience to adapt the environment or activities to promote independence or engagement of individuals with visual impairments. Therefore, getting as much information ahead of time can significantly enhance an individual’s and family’s decision-making regarding finding the right solution to helping those with visual impairments remain independent and engaged.
Many family members feel they must take their loved one with visual impairment into their home and become a caregiver. This isn’t always necessary and when it is, there are still many ways someone with low vision can actively contribute to the home and their own well-being.
Promoting Independence in the Home
We all know it is often difficult to live with someone else. We all have levels of cleanliness, organization, and routines. One of the most important things for safety and independent living for a person with a visual impairment is dependable organization systems. Here are some very helpful adaptations that can make a tremendous difference if you live with someone with a visual impairment or help with housekeeping.
- De-clutter. Everyone benefits from a clutter-free organized space, but none more than a person with low vision. It is hard to organize when there are just too many non-essential things in the space. Everything should have a specific place and always be put back in that spot. Too often, people with visual impairments are assumed to have memory issues or dementia if they suddenly can’t find things. As a person who can see, you can enter a room and scan it to locate items like the television remote control. If your vision is impaired, you will either spend a lot of time searching for the possible places it could be – including the refrigerator!
- Do not move the furniture without asking and providing an orientation to the changes. Think about how many of us get up at night to go to the bathroom and do not turn on the lights. You know the path. But, if someone moves the furniture, you might bump into something. The same principle applies here. A person learns where things are and counts on it being that way.
- If you enter or leave a room where there is someone with low vision, let them know.
- If it helps, change the lighting to ensure the best light for the individual. There is no one right answer or light source as it depends on the person.
- Use contrast if it helps. For example, put a dark rug on a light-colored tile floor at the location where a step is, use a light-colored coffee mug for coffee, put a dark-colored placemat under the plate at the table.
- Use labeling and marking strategies. For example, put a small rubber band around the conditioner to differentiate from the shampoo, put a raised dot on the 350 degrees of the oven knob, put a raised dot on the start button and 1 minute of the microwave, put a bright colored mark on the five on the telephone, etc. There is no rule, except don’t over label or overmark. Ask your loved one what would be most helpful and be creative to find adaptations that work in your home.
Getting out and engaging in community activities can be frightening for those with significant visual impairments. There are so many unknowns. People are afraid of embarrassing themselves, being treated poorly or disrespectfully by others, being ignored, and even harming themselves in public. Here are a few things the loved one can do to help build confidence and self-advocacy.
- First, start by discussing what could happen in a variety of social and community situations. You want to find out how your family member would like to handle the situation. Are there situations where they want to assert themselves and other times when they are okay with you helping? What method do they prefer to use to assert their rights? You might even role play to build confidence and self-advocacy skills.
- Ensure the individuals the person who is visually impaired is communicating with, such as doctors, store clerks, servers in restaurants, bank tellers, etc., speak directly to them. There is a tendency of these individuals to speak to the sighted person or loved one. As the loved one, you can facilitate proper communication. For example, in a restaurant, you might say, “Mom, what do you want to order?” If the server asks you what they want to order. You can also be even more subtle by turning your gaze to the person who is visually impaired, so the other person knows you expect them to talk to their patient, customer, etc.
- Not being able to read a menu, forms, signs, etc., in public can be frustrating and embarrassing. Develop plans with your loved one about how they want to handle forms, sign documents, order meals, etc.
- Recreation and leisure activities are a vital part of most people’s lives. Losing the ability to participate in these can be very difficult. Helping your loved one either adapt hobbies or find new ones will increase their life satisfaction. As the loved one, you might need to help them problem-solve, get connected, or purchase equipment.
Promote the Development of Adaptive Living Skills and Use of Devices and Technology
Vision rehabilitation teaching and therapy training is an excellent opportunity for a person with a newly diagnosed visual impairment, especially if their daily living is impacted. These services are offered through state Vocational Rehabilitation or Independent Living Older Blind (OIB) programs. Most training and services are provided at no cost. Programs for those 55 and older not seeking employment are have limited funding and staff, but you should reach out and connect with them. See the APH ConnectCenter or www.OIB-TAC.org to find services in your area. Loved ones can enhance the individual’s ability to learn and utilize adaptive skills and assistive technology by playing a part in the training. If you get the opportunity to participate in one or all the lessons, do so. If not, ask questions after each one. Ask questions like:
- What do you think you can do to adapt that yourself? (Most of us are adaptable and problem-solvers and come up with some great ideas before we even get help.)
- What new skills or techniques did you learn today in training?
- How are you going to incorporate that into daily life?
- How can I help you practice that?
It is important to be sensitive to where the individual is on their journey with vision loss. Not everyone is ready for training to learn the adaptive skills and technologies associated with blindness or low vision. However, access to peer support groups and training can be life-changing for people. Sometimes just encouraging a loved one to give it a try gives them emotional permission to move forward.
Vision loss and learning to adjust to it not only impacts the individual with the visual impairment, it impacts everyone in their life in some way. There are implications for safety, daily independent living, medication management, transportation, and almost every aspect of life. Therefore, it is critical for loved ones to participate in the adjustment and vision rehabilitation process to ensure the development of good coping strategies and independent living.
Living with vision loss is a challenge and a journey, but it is important to know that you, as the individual with the visual impairment and you, the loved one, are not alone. Find the information and resources that can help the entire family move forward safely and confidently.
Duffy, Maureen A. Making Life More Livable: Simple Adaptations for Living at Home after Vision Loss, Third Edition,
Tuttle, D.W. and Tuttle N.R. (2004). Self-esteem and Adjusting with Blindness: The Process of Responding to Life’s Demands. Springfield, IL: Charles C. Thomas
Vision loss: It’s a Family Matter – VisionAware
Getting Started 2020: A Guide for People New to Vision Loss – VisionAware
Ten Tips for Caregivers of Individuals with Vision Loss – VisionAware
Caregiving Challenges During the 2020 Holiday Season and Beyond