Coping

Roles and Relationships of Friends and Family of Those with Macular Degeneration

Deborah Shimberg, LPC
Adult Rehabilitation Services
Center for the Visually Impaired
Atlanta, Georgia

I’ve been a counselor and case manager at the Center for the Visually (CVI) Impaired in Atlanta for 21 years. I’ve had the privilege of watching over 2,000 people come into my program and in about six months, transform from frightened and sometimes depressed people who have no idea what’s next in their lives to empowered, happy, and proactive representatives of the blind community here in Atlanta.

The subject of the roles and relationships of friends and families is one that is constantly talked about between the students in classes and in our support groups. Even though each person’s story is different and unique, there are many common threads that run through all of these discussions. In my group, in addition to discussing feelings around vision loss, I like to teach assertiveness training. This is very useful for the newly visually impaired person because one of the ways that a visually impaired person gets things done is to “borrow” someone else’s eyes. This does not mean the visually impaired person is dependent or lazy or scared, it means they’re taking the initiative to get something done and one of their tools is sighted assistance. Effectively explaining the kinds of help that is needed from sighted family is not always easy. In the group, we role-play, and focus on “I” statements. For example, a client may be having an issue with a husband who does everything in the kitchen now. He has re-organized the kitchen, prepares and serves dinner because he assumes that his visually impaired wife can’t do these things any longer. I ask the client to sit in the middle of the group and I have another group member pretend to be the husband and the client practices. She will say something like:

“Bill, I really need to talk about something. Honey, you know I really appreciate how much you love me and how concerned you are about me. I want to say something very important to you right now, and I really don’t want you to feel angry about it or hurt. You know, I’ve had some training, and we’ve gotten those magnifiers, and I really feel ready to start making dinner again and serving it. I know that I will still need some help with dinner and I will definitely ask you when I need it. I’m very excited about this and I hope you are too. I couldn’t have gotten this far without you honey, I love you. ”

Did you notice all of the “I” statements? Several things are going on here. She’s treating her husband as an equal. He’s not beneath her or above her. She’s stating (1) what she feels and (2) what she wants. She’s also speaking from the heart and telling him the truth of how she feels. If the visually impaired wife tries this, and her husband still does everything for her, she “punches it up a notch,” and the conversation goes something like:

“Bill, I really need to talk about something. You know, I’ve let you know how important it is to me that I start to go back to doing the normal things I used to. When I told you this before, you appeared to me to understand. Last night, as I was making the salad, you came in and took the veggies away from me and started chopping, then went on to finish everything, saying that ‘you may as well finish’. I have to admit, it made me pretty mad, and you know I don’t want to stay mad with you. I’m letting you know again that it’s very important to me to get back to normal and it’s very important to me that you want to support me.”

Now if it still goes on, she punches it up a notch again and lets him know that she’s angry:

“Bill! I’m so angry with you! We’ve talked about this before, but I feel as if nothing has changed. I can’t talk about this right now because I’m so angry, but I would like to calmly sit down later and discuss my feelings about what happened and hopefully, we can work it out.” (NEVER try to have a rational discussion when you’re feeling very angry!)

This method of speaking assertively as opposed to aggressively or passively can assist in communicating effectively with anyone, anytime.

I asked members of the group I facilitate recently about their feelings in regard to their vision loss and their relationships with family and friends. They said the following feelings occur in the visually impaired person and the sighted family members: anger, pity, feelings of isolation, being treated like a child, loss of privacy, hopelessness, resentment, fear, anxiety, sadness and the big one – guilt, as well as a feeling of life never being the same, or life being “over”. For the sighted family member: “I can’t depend on him/her any longer” or for the visually impaired person: “They can’t depend on me any longer. What is my purpose now?”

A common reaction that can come up in families, even in happy marriages of 30 years, can be - OVERPROTECTION! A lack of knowledge about how visually impaired people do things can leave the whole family thinking that the visually impaired family member needs assistance with everything. They think: “They will never be as independent again.”

What’s the opposite of overprotection? DENIAL! The family is pretending there’s really no difference now: “Mom just has a little more trouble seeing.” They expect the visually impaired person to do everything the same, with no changes. They forget about the vision loss and move things, leave cabinet doors open, or leave their shoes in the hall. I can’t tell you how many stories I’ve heard about things like a visually impaired person brushing their teeth with preparation H because a family member moved something on the bathroom sink!

The stress from not knowing what to do can really test everyone’s patience as well as the bonds of family and friends. In general, people don’t know how to be of assistance to a visually impaired person, it’s just not something that’s common knowledge.

So what’s the solution? How can family and friends help appropriately? The answer is knowledge – Knowledge of the eye disease and the aids and training that’s available. It’s difficult to ask for or give help if you don’t know what’s helpful! Another solution – Support. Support from professionals is important, but it is very important to get that support from others going through the very same thing.

Through support groups, education, rehabilitation, the visually impaired person learns that they’re not alone, and they have other visually impaired folks to talk to about their feelings. They can learn the skills that other visually impaired persons use to do everyday tasks. This helps them to feel like themselves again, and the whole family and friend dynamics start to look like they used to. It’s common to hear clients talk about losing friends when they lost their sight. This is because no one knew what was expected. “What comes next? What am I supposed to do?” The answer to all those things is “keep going!” The visually impaired person and family simply have to find out how. Families and friends need to know their roles as part of this healing process.

Dialogue Magazine for the blind has a great short publication called “Promises to keep”. This is a document for family and friends of the visually impaired person. Some of their thoughts include:


-I will encourage him, without patronizing, to resume his place in community and family affairs.
-I will avoid blaming all of his mistakes on vision loss, sighted persons make errors too.
-I will remember that a little humor injected at just the right time may relieve the seriousness of the moment. However, if he fails to see the funny side, I will be patient. The time will come when he can laugh again.
-I will look directly at him when I speak, so that he can follow my voice with his eyes.
-I will remember that MY attitude toward vision loss is vitally important in establishing healthy attitudes in the VIP person. He needs my understanding, consideration, and love – NOT my pity. I will allow him the dignity of speaking for himself and unless he has a severe hearing loss, discourage other people from talking to him through me.
-I will identify myself immediately when entering a room or in public, so that I do not give him the insecurity of wondering who I am. You can get the entire publication from Dialogue Magazine at www.blindskills.com or by calling 800.860.4224.

The Web pages, the agencies, and the support groups that are available all address the needs of the visually impaired person and the needs of families. It is very important to use this information as part of the healing process and the transformation process. What do I mean by transformation? I mean that vision loss transforms from being a tragedy, to being simply inconvenient at times. Some days, the visually impaired person and their family will get through a day without even thinking about the vision loss. For some, transformation means discovering strengths, motivation, and talents they never knew they had.

I’ve witnessed our clients at CVI become quite thoughtful about their vision loss. They question their doctors, their DNA, and God. Over time, they work through their feelings and get to the point where they embrace their disability. “This is who I am and I’m OK!” They are happy to explain their vision loss to others and break the old stereotypes. They make new friends, find new interests, and discover that life’s not over - they’re just starting a new chapter!