Steps to Take to Get Help for You and Your Family Member
"I know Dad is having trouble with his eyes. Every time I visit he breaks a plate or a vase and blames it on other people 'moving things around.' But when I try to suggest that he get his eyes examined, he won't discuss it. How can I get him to seek help?"
Vision loss inevitably has a strong emotional impact on both the person directly affected and those close to that person.
Fear of change—and the possibility of appearing feeble or dependent—can lead some people with vision loss to withdraw socially and emotionally. In extreme cases, long-standing relationships may be severed altogether.
There's no reason for a close friend or relative to head down this path. You can become a source of emotional and practical support, and play a key role in helping your loved one resume a normal life.
What Can I Do? Some Helpful Tips
"I want mom to be able to do things for herself, but I always have to fight the urge to intervene when a task seems too difficult or dangerous."
It's hard to know when to step in, and when to stand back. There's no set formula to tell you how much help is too much when it comes to a relative dealing with vision loss. In fact, it may be some time before your mother truly knows what she's capable of doing. Patience and sensitivity to her desire for independence are essential. Here are some suggestions:
- Take the initiative. Ask directly how you can best be of assistance.
- Ask before acting. If you see your relative having trouble with a task, don't step in before asking if it's OK to help.
- Be available. Let your loved one know you are there when he or she needs you, and what kinds of help you can provide.
- Talk about it. Learn how to discuss and work out solutions to problems together.
Being Helpful Starts with Being Informed
Another way you can provide assistance to your friend or family member who's experiencing vision loss is to learn as much as you can about their eye condition and the resources that are available to help.
Things To Know About Eye Examinations
- Make sure your friend or relative is examined by an ophthalmologist, a medical doctor who specializes in eye diseases.
- Also be sure to consult a low vision specialist, an ophthalmologist or optometrist with a specialization in low vision. A low vision specialist can help your loved one make the best use of remaining vision by prescribing hand-held magnifiers, task lighting, or electronic desktop magnifiers.
Things To Know About Vision Rehabilitation Services
- Vision rehabilitation services are provided by both public and private agencies for people experiencing vision loss.
- Rehabilitation services can include training in everyday living skills, orientation and mobility, and computers and assistive technology.
- Before talking to your friend or relative about these services, you can gather information by contacting your state or local private agency serving people with vision loss.
- See What Kinds of Services Will You Need to Maintain Independence After Vision Loss? for a "road map" that can help you navigate the vision rehabilitation process.
Things To Know About Supporting Your Friend or Relative During Rehabilitation
- Talk to your loved one about vision rehabilitation, share the information you've found, encourage participation, but always leave the final decision up to him or her.
- Get involved in your loved one's independent living skills training. Learn as many of the adaptive techniques as you can. You can encourage others best by showing your willingness to take the journey with them.
- Learn about ways to make the home environment safer for a person experiencing vision loss. These can include rearranging furniture for greater ease of movement, improving lighting, and using contrasting colors for greater visibility—such as placing a dark chair against a light-colored wall or a light sofa against a dark-paneled wall.
- Remember, rehabilitation is a family affair. Encourage discussion about vision loss and its impact among all family members—including young children. This isn't the time for anyone to feel left out.
- Support your friend or relative's desire to continue daily activities and cultivate new interests.
- An older relative with vision loss can still babysit, help grandchildren with homework, or prepare meals. Look for opportunities for your relative to provide assistance, not just receive it.
- Ask your state or local agency about support groups for people newly experiencing vision loss and their families. If there isn't one in your area, think about starting one.
Helpful Books from AFB Press
- Making Life More Livable: Simple Adaptations for Living at Home After Vision Loss, Third Edition
- Aging and Vision Loss: A Handbook for Families
Esther and Gwen: A Mother and Daughter Story Video
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Transcript of Video
Esther Smith, Age 81, Macular Degeneration
The Initial Shock
ESTHER: The early part of 1995, I sought the advice of an ophthalmologist. He told me I had macular degeneration. That was 11 years ago. After about six or eight months with him, I was told that I had nothing... there wasn't anything I could do. I went into the ladies restroom and shed buckets of tears. I was devastated.
Esther's Daughter, Gwen: How Mom Reacted
NARRATOR: An auburn-haired woman in a beige suit.
GWEN: She would not go out with her friends unless it was somebody who already knew that she had macular degeneration. She didn't want to tell anybody that she had it. She was afraid of making a mistake. She was afraid that she would embarrass herself.
The Effect on the Family
GWEN: For us, it was a time of denial, a time of saying, well, they'll fix it by the time we have it. It was a time of being angry, because they call us the sandwich generation, that we still have to be available to our kids and we need to be available to our parents. I had no idea how much of my own life I would be asked to give up to take care of things that mother might need.
ESTHER: The new Esther I don't think existed for quite a while, because, um... I was hiding the fact that I had macular degeneration. All I could see after about four months or so is that this wasn't the way I wanted to live my life. And, um... I think I wanted more control over my life.
GWEN: She has gained enough confidence and is willing to try things, so we can offer something and she can try it and say, no, that didn't work, or, yes, that's worked, let's try that a little bit further. I think mother got really good at trying things and re-inventing herself to allow herself to be open to things that she would not have done otherwise.
How Technology Helped Esther
ESTHER: I call it my play toys. And I wouldn't be without them. The biggest thing that helps me right now is my CCTV, and it was the first toy that I got at the time, and that was ten years ago, and it's the same one, and it works beautifully. I've gotten scanners. There is a scanner that's about the size of an 11x14 pad of paper. I put a printed piece of material in it, it scans it, and it talks back to me. It tells me what it reads. It does not read cursive, however, but that's where my CCTV comes in. I have another scanner that is in the form of a camera device. It's called a QuickLook. That is about four inches tall and about seven inches wide. I carry it in my purse. I go to restaurants, I'm independent if I have this thing in front of me. I scan the menu.
NARRATOR: Pictures of Esther travelling with friends.
ESTHER: I travel by myself in the United States. When I'm with somebody, I will travel abroad. As long as I have a tongue in my head, I'll never get lost. You know, you can always ask questions. Leave time enough at an airport, for instance, for mistakes.
Look Ahead, Not Behind
ESTHER: We can't do anything about yesterday. We can do something about today, and certainly about tomorrow.
NARRATOR: Pictures of Esther and friends in a convertible and golf cart.
ESTHER: So why not go for it? Why should you be unhappy the rest of your life? Because you haven't put the effort forth to find an answer or a solution to a problem.
- Author Ed Henkler Helps Readers Support Parents with Age-related Vision Loss
Ed Henkler, son of a mother with age-related macular degeneration, writes an e-book for helping families with useful tips and resources on dealing with vision loss. Read about his journey and his book.
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