Steps to Take to Get Help for You and Your Family Member

Arrows pointing up stair steps aimed at a target

“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 suggest that he get his eyes examined, he won’t discuss it. How can I get him to see?

Declining vision inevitably has a strong emotional impact on those 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 changes 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 regular everyday 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. I’m never sure what to do.”

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 for a relative with blindness or low vision. It may be some time before your mother truly knows what she can do. 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 assist your friend or family member experiencing vision changes is to learn as much as you can about their eye condition and the resources available to help.

Things To Know About Eye Examinations

  • Ensure your friend or relative is examined by an ophthalmologist, a medical doctor specializing in eye diseases.
  • Also, consult a low-vision specialist, an ophthalmologist, or an optometrist specializing 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

  • Both public and private agencies provide vision rehabilitation services for people experiencing vision changes.
  • 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 who are blind or low vision.
  • 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, and 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 a willingness to take the journey with them.
  • Learn ways to make the home environment safer for someone experiencing vision changes. 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 changes 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 who is blind or low vision can still babysit, help grandchildren with homework, or prepare meals. Look for opportunities for your relative to assist, not just receive it.
  • Ask your state or local agency about support groups for people newly experiencing vision changes and their families. If there isn’t one in your area, think about starting one.

Helpful Books from APH Press

Esther and Gwen: A Mother and Daughter Story Video
 

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 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 my 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 was 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 that 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 11×14 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.

Feeling Empowered

NARRATOR: Pictures of Esther traveling with friends.

ESTHER: I travel by myself in the United States. When I’m with somebody, I will travel abroad. I’ll never get lost as long as I have a tongue in my head. 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.

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