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Macular Degeneration

FIFTEEN TIPS FOR FAMILY & FRIENDS

by Lylas G. Mogk, M.D. and Marja Mogk

 

Here are fifteen tips that family members and friends of people with macular degeneration can do to help:

#1 Be Direct About Vision

Ask your friend or family member what they can and can't see so that you know. Don't worry about using phrases that emphasize vision, like "did you see Zelda yesterday?"

#2 Identify Yourself and Say Hello

Take the initiative to say hello and identify yourself when you see your family member or friend. And don't always assume that other seniors can see you. At the very least, one out of every twelve seniors over 75 has low vision.

#3 Give Clear Directions

Give clear verbal directions and avoid vague replies like "It's over there." Don't assume that your friend or family member can read your facial expressions or gestures. Say in words everything you want to convey.

#4 Use Black Felt Tip or Ink Pens and Print in Clear Lettering

Always write notes or letters to your family or friend in black felt tip or ink pen or black computer print. Print clearly in letters large enough for your friend or family member to see. Don't use colored paper or pens, ball point pens, or pencils since they are very difficult to see. For birthdays and holidays, consider calling instead of sending a card.

#5 Give Low Vision Gifts

Consider giving low vision gifts like talking calculators, watches, clocks, thermometers, weight scales or computer software. You could also give large-button or automatic dialing phones, large-print cards, clocks, calendars, or address books. There are all kinds of other gifts to choose from in the low vision catalogs listed at the end of this book. Alternatively, consider giving a book on tape, tickets to a concert, or help purchase a CCTV.

#6 Keep the Environment Predictable

A predictable environment makes a big difference for anyone with low vision. Many people can compensate for less vision by relying on their knowledge of the environment. Help your friend or family member keep their home (and yours if you live together) as predictable as possible. Keep frequently used items like house keys, salt shakers, and trash bags in designated places. Put things away after you use them, and close cupboard and stairwell doors. If you are a guest in a friend or family member's home, return any item you move to the place you found it, even a coffee table book that looks merely decorative. If the color of the book contrasts with the coffee table, your friend or family member may be using it to see the coffee table more clearly.

#7 Offer Your Arm, Don't Take Theirs

When you walk with your friend or family member, offer your arm. Don't take your friend or family member's arm because you may throw him or her off balance. This guideline for walking with your friend or family member applies to all of life with low vision: offer help where it's necessary, but don't just do it yourself.

#8. Don't Just Do For Your Parent

Enable your parent to do as much for him or herself as possible. Don't assume that because your parent has low vision he or she isn't capable, and don't foster that assumption in your parent. If your parent wants to take out the trash, walk to the cleaner's, mow the lawn, cook a family dinner, volunteer at a local center, or run a manufacturing company, so much the better! As busy adult children, we often feel like less responsibility would be a relief for ourselves, so that must be true for our parents. But having nothing to work towards can be deathly boring; too much responsibility is stressful, but too little is unhealthy. Don't take away anyone's reason for having to be up and about in the morning. And don't take away anyone's ability to help you. Take that time you would have spent doing your parent's chores and share some activity you would both enjoy.

#9 Share Activities You Both Enjoy

Find new or old activities to share that you would both enjoy. Call your friend or family member and make a date. Here are a few suggestions:

Dining out
Attending a wine tasting or food fair
Going to the symphony or an opera concert
Going to a botanical garden
Golfing, bowling, swimming, lifting weights, walking in a park
Listening to a book on tape or National Public Radio news together
Doing a crossword puzzle together
Playing cards, chess, checkers, or large-print scrabble
Demonstrating at a political rally
Getting facials and manicures
Going to a lecture series, a book reading, or poetry reading
Going to a baseball or football game (you can also listen to commentary via the radio either at home       or in the stadium with a portable radio and earphones)
Taking yoga, stretching classes, tai chi, water aerobics, or meditation classes
Starting or joining a salon, discussion group, or support group
Attending religious services
Volunteering at a local charity
Sailing or skydiving

#10 Encourage Interests

When you lose vision, you don't lose your physical or mental energy. Encourage your friend or family member to maintain their interests and cultivate new ones. Encourage hobbies, volunteer work, membership in senior clubs or support groups, and listening to National Public Radio news or to Newsweek on cassette tape. We so often think of paid jobs or parenting as significant, and hobbies or interests as optional, but they're not. Everybody needs to be a part of their community, aware of it and alive in it. When you're younger, jobs and parenting may take up most of your time, but when you're a senior you have time for other interests. And whatever you spend your time doing is just as important for the quality of your life today as your job was for the quality of your life in earlier years. For adult children especially, retirement may look like heaven, and having no role may seem like sweet relief. But just being retired without any interests, or just living comfortably in a tidy apartment without much stimulation, or just coping with low vision as a full-time preoccupation is a short-term recipe for boredom, and a long-term recipe for personal distress and crisis. Being alive is the sum total of our actions, mental and physical, in this world. Be active, encourage action.

#11 Realize The Importance of Friends

If you are a friend, realize how important you are. If you are an adult child, realize that everyone needs friends. We are so used to thinking of family as our fortress and friends as nice but not as necessary, that we discount their importance. While family is often our fortress, friends may be equally, and sometimes even more important for seniors' happiness and longevity. I often meet seniors who have moved out of their communities and into apartments in their adult children's neighborhoods. The move initially solves a number of problems: the adult child feels more confident caring for their parent, the parent feels safer, and keeping accurate banking records or troubleshooting with doctors may be easier. But over time, as the adult child returns to his or her responsibilities, working full-time or shuttling children to school, the senior parent spends the vast majority of the day alone.

Without any friends, seniors are prone to loneliness regardless of how much their adult children try to meet their needs. And loneliness is not a good thing. Loneliness does not make you very excited about living, and it may even lead to clinical depression. Keeping old friends and making new ones should be at the very top of the priority list when considering living arrangements. I strongly recommend that seniors stay connected to their local communities, move to senior residences that feature plenty of social events and encourage meeting people, or actively work to make new friends, join new groups, and engage in new activities with other people wherever they move. Adult children would do their parents a greater service helping them make or keep friends than almost anything else.

#12 Watch for Depression

Depression is very common among people with macular degeneration. Many people experience a short period of depression as they adjust to vision loss, but many others experience prolonged periods of depression. Be aware of changes in your friend or family member's emotional state, sleeping patterns, weight, or behavior. Excessive worry, bouts of crying, listlessness or disinterest, low motivation, pessimism or snippiness, social withdrawal, a refusal to communicate or an excessively stiff upper-lip, moping or helplessness may all signal depression. Depression is not healthy for anyone. Talk directly to your friend or family member about your concerns. If your spouse or parent appears depressed, make an appointment with his or her doctor, pursue visual rehabilitation, and get him or her out into the world or involved in new activities (even if you have to give a gentle push).

#13 Participate in Visual Rehabilitation

Participating in visual rehabilitation in the broadest sense means fostering a sense of independence, self-determination, and joy in you friend or family member. That does not mean that anyone who is successfully pursuing visual rehabilitation needs to prove that they can do it all by themselves, live on their own, or get a volunteer job. But it does mean living as fully as you can. There are many practical things you can do to help your friend or family member follow a program of visual rehabilitation. Here are just a few suggestions:

Read a Visual Rehabilitation chapter together and talk about implementing the suggestions
Do the reading workshop together
Help rearrange furniture, tape down area rugs, install new lighting fixtures, choose contrasting tablecloths or dishes
Help rearrange clothing or shelves for better visibility
Help label files, boxes, bottles, stove dials, washing machine dials, and canned goods
If you live together, tell your friend or family member what they can do to help you with chores or other    
     responsibilities.
Help your friend or family member learn to use public transportation
Talk directly to your friend or family member's experiences and feelings about low vision
Help your friend or family member to design their own exercise program and exercise regularly.
If you have a computer, consider re-printing your friend or family member's recipes or addresses in large type and       collecting them in a binder, or have them bound at a copy shop.

#14 Help Start a Support Group

Support groups are a fantastic way to build community. At a low vision support group, your friend or family member would have the chance to talk to people who have walked a mile in their shoes and can understand their experience. Support groups are great places to vent, to laugh, to get new solutions for daily challenges and new ideas for living. Support groups can also be very helpful for spouses of people with low vision. It's very comforting to talk to the "natives," as Bernie Siegel calls anyone who shares a common experience with you. If there is no support group in your area, that doesn't mean there aren't any other people with low vision. It just means that no one is getting the benefit of a support group. Why not help start one?

#15 Keep Your Sense of Humor

We are all prone to take life too seriously. Very few people get to the end of their lives wishing they had been more earnest, more worried, or more self-conscious. We all try so hard to get it right the first time, to avoid misfortune and mistakes, to look good in public. Sometimes we forget to laugh. Laugh from your belly, and let your friend or family member see the daily humor in this busy, unpredictable, ridiculous, profound, heart-breaking, and heart-warming thing we call living.


From
Macular Degeneration: The Complete Guide to Saving and Maximizing Your Sight, by Lylas G. Mogk, M.D. and Marja Mogk. Copyright 1999 by Lylas G. Mogk, M.D. and Marja Mogk. Excerpted by arrangement with Marja Mogk. $13.95. Available in local bookstores or click here.