Parent With Low Vision: Emergency Plan, Phone and Pill Labels

If your parent has low vision, the emergency plan has to work for someone who can't read small print, may not spot a step edge and may squint at the phone. That means four things: knowing which eye changes mean go to the ER now, setting up the phone so they can call for help without reading the screen, asking the pharmacy for large-print or audible labels, and printing their emergency information in a size they can actually read.

Below is how to do each one, plus what goes on the eyes page of the binder.

What low vision means

The National Eye Institute (NEI) defines low vision as a vision problem that makes everyday activities hard and can't be fixed with glasses, contacts, medicine or surgery. It names the most common causes as age-related macular degeneration (AMD), cataracts, diabetic retinopathy and glaucoma. NEI adds that low vision is more common in older adults because those diseases are, and that aging alone doesn't cause it.

Each cause takes away a different piece of the picture. MedlinePlus describes the patterns this way, and the NEI condition pages fill in the rest:

Cataracts are the odd one out: NEI says surgery can remove them and correct the vision problems they cause.

So learn which kind your parent has. "Mom can't see well" doesn't help a paramedic or a home aide. "Mom has macular degeneration, so she can't read or recognize faces, but she gets around the house fine" does.

Eye changes that mean go now

Low vision usually changes slowly. A sudden change is different, and MedlinePlus is blunt about it: sudden vision loss is always an emergency, even if the vision isn't completely gone. It adds that most serious forms of vision loss are painless, so no pain doesn't mean no hurry.

The stroke row is easy to overlook. MedlinePlus lists "sudden trouble seeing in one or both eyes" among stroke symptoms. A parent who already sees poorly may shrug it off as a bad eye day. Our guide to stroke signs in an elderly parent walks through what to tell the 911 dispatcher.

If your parent lives alone, add the eye doctor's after-hours number to the phone favorites and the large-print call list described below.

Set up the phone so they can call for help

NEI suggests changing phone settings to increase contrast, make text larger and have the phone read aloud. Most phones have these; look in Accessibility settings, or search Settings for the words below. Menus and names vary by phone.

1. Larger, bolder text. Many phones have text and display settings for a bigger font, a bigger display size that enlarges everything on screen, and bold text. How large the text can go varies by phone. Some apps ignore the font setting, so check the ones your parent uses most.
2. A magnification shortcut. Many phones have a magnification shortcut, such as an on-screen button, a button combination or a tap gesture, that zooms in on the screen. The shortcuts and how far it zooms vary by phone.
3. Read-aloud. Phones can read the screen out loud, and some can read printed text through the camera.
4. Voice calling. Set up the phone's voice assistant so your parent can say "call Karen" without looking. Test it from the lock screen with the TV on, and use contact names that sound different.
5. An emergency button shortcut. Many phones can call emergency services when the side or power button is pressed several times in a row, and some can also share location with emergency contacts. The number of presses and the settings vary by phone, so check your parent's phone settings. Don't test it by doing it for real, since it may dial emergency services.
6. Medical information on the lock screen. Most phones let you store allergies, conditions, medications and emergency contacts so a responder can see them without the passcode. On some phones it can also be shared automatically during an emergency call. Our guide to emergency info on a parent's phone has the step-by-step.

Then run a drill: ask your parent to call you using only their voice. If they can't do it reliably, look at a wearable alert button as a backup; our medical alert system questions help you compare.

Keep a paper backup by the phone too: a large-print call list with five names at most.

Make the medicines readable

A 2012 federal law, Section 904 of the Food and Drug Administration Safety and Innovation Act, had the U.S. Access Board convene a working group of consumer and pharmacy industry groups to write best practices for prescription labels people with vision loss can read. The 2013 best practices recommend that pharmacies:

• Offer audible, braille and large-print label options, and give the patient the format they choose
• Fill the accessible-label prescription in the same time frame as any other
• Not add a surcharge for the accessible label or the equipment needed to hear it
• Include every item from the regular label, in the same order, including warning stickers
• Print large-print labels in 18-point bold, non-condensed sans-serif type, sentence case, with 1.5 line spacing
• Use the highest contrast possible, ideally black text on white or pale yellow, on non-glossy material

Two caveats. The Access Board calls these recommendations advisory only, not mandatory, and the law says they don't create rights or obligations, so a pharmacy isn't required to follow them. The law also says nothing in Section 904 limits rights under the Americans with Disabilities Act. If the first pharmacy can't help, ask whether a mail-order pharmacy on your parent's plan can; the working group noted mail-order pharmacies may be better equipped for hard-copy braille labels.

What to say at the counter: "My mother has macular degeneration and can't read her labels. Can you print large-print labels, or do you offer talking labels?" Audible options include a small recorder on each bottle that plays the label at the press of a button.

At home, a tip sheet from the American Foundation for the Blind and the American Society of Consultant Pharmacists Foundation, hosted by NEI, offers five simple solutions for managing medicines with low vision:

• Ask the pharmacist for a back-up label in larger print
• Mark bottles with large-print labels, tactile dots, rubber bands or braille
• Try a talking medication identifier if large print doesn't work
• Sort pills over a tray with good contrast, so they show up and don't roll away
• Put a light close to the label, and attach a daily dose tracker to each bottle

The American Printing House for the Blind's medication page adds that pill organizers come with large-print or tactile labels, and to choose print in a contrasting color.

None of this changes what your parent takes. If a label system is confusing, or your parent mixes up two bottles that look alike, call the pharmacist or doctor before anyone changes a dose. Our guide to a medication list for an elderly parent has the fields that matter; print it in the same large type.

Light, contrast and falls

Poor vision and falls go together. MedlinePlus' fall prevention instructions say to have good lighting on the path from the bedroom to the bathroom, in the bathroom and on any stairs, and to tell the doctor if eyesight has gotten worse, because better vision helps reduce falls.

Glare is its own problem, especially with cataracts. A Macular Society lighting leaflet hosted by an NHS hospital trust recommends:

• Several light sources around a room instead of one bright overhead light, with no dark corners
• Shades so the bulb doesn't shine straight into the eyes
• Similar light levels in every room, so eyes don't have to adjust when moving through the house

The leaflet adds that many people who think they need low vision aids actually just need better lighting. NEI also suggests anti-glare sunglasses for people with low vision.

Contrast helps where light can't. A strip of bright tape on the top and bottom step edges, a dark mat in front of a pale tub: these help your parent find edges they'd otherwise miss. For a parent with glaucoma, clear the sides of hallways too, since that's where their vision is weakest.

Our home safety checklist covers the room-by-room basics, and if falls have already started, read why an elderly parent keeps falling before you buy anything.

Get a low vision evaluation

Some families stop at "the eye doctor said there's nothing more to do." That usually means nothing more to treat. NEI says low vision is usually permanent, and that vision rehabilitation helps people make the most of the vision they have.

According to NEI, it can include training with magnifiers and screen readers, daily living skills, help setting up the home and adjusting phone settings, counseling or support groups, and transportation and household services. Specialists such as occupational therapists and orientation and mobility specialists may join the care team.

How to get it:

1. Ask your parent's eye doctor for a referral to low vision or vision rehabilitation services.
2. If they don't have an eye doctor, NEI says people can get these services on their own. It points to the American Optometric Association's doctor directory (you can refine the search to low vision) and your state's vocational rehabilitation agency through the Rehabilitation Services Administration.
3. Before the visit, write down the three things your parent most wants to do again, so the specialist has goals to work on.
4. Ask their insurance or Medicare plan what's covered before the first visit.

The emotional side is real. The American Academy of Ophthalmology's low vision page warns against isolation and depression and encourages counseling and support groups.

Make the binder itself readable

Families often print a careful binder in type the person it's about can't read. If your parent is home alone when something happens, they're the first reader.

Borrow the Access Board's large-print rules and apply them to your parent's copy:

• 18-point bold or larger, plain sans-serif type, sentence case rather than all capitals
• Black on white or pale yellow paper, 1.5 line spacing, one topic per page
• Matte paper and matte sheet protectors, since glossy ones throw glare
• A thick black marker for anything added by hand

Then make two editions: a short large-print copy where your parent sits (who to call, the eye doctor, where the medicine list is), and the full binder in regular type for you and your siblings. Put a large-print Emergency Information Sheet on the fridge or by the door, where responders and family can find it.

Glasses and magnifiers go to the hospital with your parent and are easy to lose there. Our guide to keeping hearing aids, glasses and dentures safe in the hospital covers labeling and what to tell the nurse.

The eyes page of the binder

Give vision its own page, written so an ER nurse or a substitute aide knows in 30 seconds how to help.

• Eye conditions, and which eye (left, right or both)
• What your parent can and can't see, in plain words: "Can't read print or see faces; side vision is fine" or "Misses things on her left side"
• How to help: "Say your name when you walk in," "Hand her papers, don't point at them," "Approach from the right"
• Eye doctor and low vision specialist, with office and after-hours numbers
• Eye drops and eye injections, with schedule (also on the main medication list)
• Recent eye surgeries or procedures, with dates
• Where the glasses, reading glasses, magnifier and sunglasses live, and where the spare pair is
• Phone features set up: voice calling, SOS, lock-screen medical info, and who set them up
• Pharmacy, and the label format they provide (large print, audible)

For a parent who lives alone, our emergency plan for a parent living alone covers check-in routines and who has a key.

Frequently asked questions

Is low vision the same as legal blindness?

No. Low vision means vision problems that make daily tasks hard and can't be fixed with glasses or standard treatment. MedlinePlus says people with vision worse than 20/200 even with glasses are considered legally blind in most states. Many people with low vision are not legally blind.

Can a pharmacy give my parent large-print prescription labels?

It's worth asking. The Access Board's best practices recommend large-print, braille and audible labels at no extra fee, but they're voluntary. If your parent's pharmacy can't, ask about mail order.

Are floaters an emergency?

A few floaters are normal, according to NEI. A sudden increase in floaters, flashes of light or a curtain over part of the vision can mean a retinal detachment, which NEI calls a medical emergency: go to an eye doctor or the ER right away.

Doing it yourself, or getting help with it

You can build all of this yourself. If you'd rather not start from a blank page, Emergency Binder Now asks about 25 minutes of guided questions and turns your answers into a printable binder, with conditions, medications, doctors and contacts on a one-page Emergency Information Sheet for paramedics and the ER. You can see a sample binder before deciding.

This article is general information, not medical advice. If your parent has a sudden change in vision, contact their eye doctor or go to the ER right away, and call 911 for stroke signs. Questions about their eyes, medicines or labels belong with their doctor or pharmacist.