Ask HN: My mother is slowly losing her eyesight, how to prepare?

Not addressing your question...but I'd be looking for quality second and third opinions about her underlying medical condition. My mother lost all sight in one eye, after an "excellent" hospital blew through $mid_five_figures in testing and diagnosis. They failed to figure out what was actually wrong (until it was too late, and further symptoms made it very obvious).

Vs. I later mentioned a couple of mom's early symptoms to my mere optometrist, and he told me the (correct) diagnosis in ~5 seconds. (It was something which affects ~1 in 200 older women of north-west European ancestry, and is easily treatable.)

In retrospect - the hospital was very focused on using expensive tests to look for important-sounding and expensive-to-treat diseases. Vs. a "what typical disorders in this type of patient would result in these symptoms?" diagnostic strategy.

There are electronic magnifying lenses that help in using paper (but seen on a screen) which are simple enough to operate (basically they are a camera and a screen).

The small "portable" ones are fine for spot/occasional use, but ot read a book one of the large "desktop" devices is usually working better, though it is inconvenient as the user needs to be sitting at a table.

These help a lot when the (I have to presume the illness is a maculopathy) visual impairment is at a stage when there is a need for high contrast (BTW most of these can change colours of text, as every person might have a different capability with different colours for text and background).

Unfortunately often what the patient sees is also somehow "garbled", horizontal lines may start being not look straight anymore and then reading becomes very difficult as some letters may be "jumped over", the common test is with a "Amsler grid":

https://en.wikipedia.org/wiki/Amsler_grid

the wikipedia article also shows how a patient might see it.

In a further stage, the patient might develop "holes" or black areas right in the middle of the visual field and reading becomes even more difficult, as it is needed to move the eyes and try to catch the letters on a more peripheral area.

That is called "eccentric fixation", and it is part of "visual rehabilitation" programs that attempt, through specific exercises, to train the patient to use their eyes in a "different" way to overcome, at least partially, the central sight issues.

Of course it all depends not only on the specific kind of illness, but also on the specific patient and patterns of vision.

To give you a single personal anecdata my mother for some time had a very good response to simply using specific filter lenses (yellow-red).

Here:

https://www.intechopen.com/chapters/72559

you can find an introduction to the matter, but of course you need to find in your area appropriate medical structures.

Have you checked whether you can slow down her eye issues? For instance, in many cases of macular degeneration or for glaucoma it is totally possible to get a dramatic slowdown with an appropriate treatment.

These treatments are becoming mainstream, as in approved by regular healthcare providers such as NHS.

She might find a device like Alexa helpful if reading no longer becomes an option - with it she can get audio books, music etc.

My grandfather was a avid reader (mostly history ww2 and ww1) and went blind in his 70s. We got him a Alexa and he found it fantastic. It was a major improvement to his quality of life in his final days.

I have a condition that makes it more likely to lose my vision when I get older much faster than my peers, I'm decades out from this but this is how I'm getting ready. Some of this I'd probably be offended if someone brought up that I ''should'' do so I'd handle it with some grace but; Getting used to using audio readers and navigating with accessibility technology. Getting used to using shortcuts to navigate, where I don't need to see what options if I know I'm triggering them. I'm learning braille for fun while its just for fun.

All the best, not sure if it is helpful at all but its all I could think up <3

Buy her a smart speaker or teach her how to use Siri, Google Assistant or Alexa on her phone. MyCroft is also an open source alternative. If she can speak english he is in luck . I am hopeful that there will be chatGPT integration and support for other languages too. Please give love to Mycroft's opensource github page: https://github.com/MycroftAI

Teach her how to text you and listen to audiobook and podcast using smart speaker.

For reading, have you considered audiobooks? Since you don't know how the degeneration will progress, it might be easier to start listening to books rather than magnifying and reading them.

Additionally, I would strongly recommend seeing a rehabilitation counselor at some point. They might also be able to better tools.

If you live in the United States take a look at https://www.loc.gov/nls/ They offer a decent number of books and provide easy to use devices to play them. You should investigate the built in screen readers on iOS and Android. Using these you can use an app to listen to books from the NLS library for the blind. Audible is also accessible with screen readers. Using screen readers the Kindle app on iOS and Android is also accessible.

My mother has a very similar condition and has been recently declared legally blind and her vision worsens by the month. She primarily uses a Vision Buddy (https://visionbuddy.com/) for screens and for books, she has an audio book player that connects to the Library of Congress where she gets free audiobooks (https://www.loc.gov/nls/enrollment-equipment/equipment-neede...)

There are some great government resources for books. Your state almost certainly has something that works with the Library of Congress. https://www.loc.gov/nls/ is a good starting point. You can also search something like “your state” + “accessible media”

Can someone change the title of the post please?

s/looking/loosing/

Learn to touch-type. Be open to new interests that can emerge even if things tend to be text-focused right now.

I'm going to suggest something like and iPad + Kybook3 app for ebooks. It'll let her read ebooks at whatever size makes her comfortable, and then easily have it switch to speaking the text. Get her used to text-to-speech in a way that still lets her go back and forth. You have to enable and play around with a few iOS settings to make it all ideal. Speech is surprisingly good now and will only get better. Respond to this if you want more info on my suggested settings for it.

Just sharing this for general information. But there’s studies involving red light therapy for slowing macular degeneration. Seems unclear if it works-

https://www.aao.org/eye-health/news/red-light-protect-aging-...

Just sharing this for general information. But there’s studies involving red light therapy for slowing macular degeneration. Seems unclear if it works-

https://www.aao.org/eye-health/news/red-light-protect-aging-...

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Lots of great advice here. For what it's worth, mine is:

- Resist the urge to build bespoke technologies/solutions. You need durable techs that won't leave her discouraged when she feels the need to lean on you a lot for support. I've seen it before: it's too easy to accidentally become her assistive device. You need to be your own person, too!

- Encourage her to focus on changing habits now so that she isn't faced with both the terribleness of losing eyesight and stress of learning new habits. For example: can she start checking out audio books? Does she use Siri/Alexa/Whatever regularly? Can she scratch the quiz itch in other ways? Jeopardy! is great because you can be blind and still follow 98% of it.

- Could she enable assistive modes now to get used to them and use her own eyesight to help learn how to master them?

- What opportunities are there for this also becoming a new, exciting chapter in life? How deep has she explored the enormous world of music?

Vision loss runs in my family and has affected a few of my uncles and grandparents, so I’ve seen this multiple times.

Braille can absolutely be learned at any age, and is a godsend for an avid reader. My grandmother learned braille at 72 and it changed her life - she never got into audio books, and I think she also appreciated the community of her local braille library. She also had a braille reader which attached to a console and worked surprisingly well - perhaps ironically she became much more technically capable and comfortable after losing her sight. She used that to write and read email in pine (I set that up for her in the early 2000’s, I’m sure better options exist now.)

My uncles who’ve lost their sight both picked up braille early and have barely skipped a beat. I believe learning and leveraging braille while partially sighted both made it easier to adapt and mitigated the emotional impact of their loss as it progressed.

There are other advances in tactile displays happening every day now, one which I’ve been following is https://pad.dotincorp.com/.

PS. If your mother has AMD (as my family does), be aware that there’s a significant hereditary component. You should be sure to inform your doctor and consider annual ophthalmologist checkups.

First off, I'm sorry your mother is going through all this and it's great that you're doing your best to support her.

My one contribution is this: get her familiar with technology for blind people BEFORE it gets too bad. It is so much harder to learn after. There's a lot of good tech out there for disabilities. But a lot of it is not intuitive and it takes a while to learn.

My family has a genetic disorder very similar to Stargardts disease which is a form of macular degeneration (loss of central vision). I have it, my mother has it (who is technically challenged/stubborn... lol), two of her brothers have it, her father had it, etc.

MY mother is also an avid reader but the disease is progressed much too far for her to read anything without a powerful magnifier and even then she can only read 1-2 letters at a time which is too slow to actually read a book. What she has done is change to audio books many years ago.

In Canada we have the CNIB (Canadian Institute for the Blind) that can facilitate purchase (at a discount if necessary) and training/setup of specific readers designed for the bling/near blind. They have a library of books that can be loaded (for free here for people who are blind/near-blind). She will 'read' 1-5 books a week depending on what else she is doing. I would be surprised if there was not a similar organization in your country. Most libraries here also have free audio books that can be rented/borrowed.

The device is a Victor Reader, https://store.humanware.com/hca/victor-reader-stream-handhel... and although is quite expensive has simple enough navigation that even my mother can use it. It's quite robust, she just recently replaced hers after nearly 8 years of daily use.

I would highly recommend you get her familiar with/using such a device BEFORE she is seriously visually impaired. It's always easier to learn those sort of things while you still have sight and are younger.

As for the 'crosswordy' stuff, I see two options, 1. go digital and get her TV (hopefully larger size) hooked up to some sort of computer that she can access them from. 2. If they are only available in print, there are CCTV magnifiers that can help people read/use books. https://store.humanware.com/hca/low-vision-reveal-16.html Again, crazy expensive.

I'm just starting my serious degeneration (still have my drivers license but likely for only a few more years) but I'm using large monitors (32") and handheld magnifiers (many types, here is my current favourite but it's heavy https://www.lighthousecanada.ca/bright-field-magnifier-with-...). For me, I 'lose' the location of the mouse pointer and thus have significantly increased the size and contrast of it. There are many enhancements on Win10/11 for the visually impaired. You can also even get specific software that will read what's on the screen and, as long as you are already familiar with how computers work, can still use a computer even totally blind. Phones are the same. Get to know the features before losing significant sight as they are finicky on something like a phone.

Good luck with your mom, I know the struggle with someone technically challenged and, with my mom, stubbornly thinks it won't help her at all so she doesn't even try... Sigh....

Maybe want to fix the title "Looking" -> "Losing"

My family has a genetic disorder very similar to Stargardts disease which is a form of macular degeneration (loss of central vision). I have it, my mother has it (who is technically challenged/stubborn... lol), two of her brothers have it, her father had it, etc.

MY mother is also an avid reader but the disease is progressed much too far for her to read anything without a powerful magnifier and even then she can only read 1-2 letters at a time which is too slow to actually read a book. What she has done is change to audio books many years ago.

In Canada we have the CNIB (Canadian Institute for the Blind) that can facilitate purchase (at a discount if necessary) and training/setup of specific readers designed for the bling/near blind. They have a library of books that can be loaded (for free here for people who are blind/near-blind). She will 'read' 1-5 books a week depending on what else she is doing. I would be surprised if there was not a similar organization in your country. Most libraries here also have free audio books that can be rented/borrowed.

The device is a Victor Reader, https://store.humanware.com/hca/victor-reader-stream-handhel... and although is quite expensive has simple enough navigation that even my mother can use it. It's quite robust, she just recently replaced hers after nearly 8 years of daily use.

I would highly recommend you get her familiar with/using such a device BEFORE she is seriously visually impaired. It's always easier to learn those sort of things while you still have sight and are younger.

As for the 'crosswordy' stuff, I see two options, 1. go digital and get her TV (hopefully larger size) hooked up to some sort of computer that she can access them from. 2. If they are only available in print, there are CCTV magnifiers that can help people read/use books. https://store.humanware.com/hca/low-vision-reveal-16.html Again, crazy expensive.

I'm just starting my serious degeneration (still have my drivers license but likely for only a few more years) but I'm using large monitors (32") and handheld magnifiers (many types, here is my current favourite but it's heavy https://www.lighthousecanada.ca/bright-field-magnifier-with-...). For me, I 'lose' the location of the mouse pointer and thus have significantly increased the size and contrast of it. Dark mode is also very very useful for me as white text on black is readable, where the black text on white overloads my vision and I can't see anything. There are many enhancements on Win10/11 for the visually impaired. You can also even get specific software that will read what's on the screen and, as long as you are already familiar with how computers work, can still use a computer even totally blind. Phones are the same. Get to know the features before losing significant sight as they are finicky on something like a phone.

Good luck with your mom, I know the struggle with someone technically challenged and, with my mom, stubbornly thinks it won't help her at all so she doesn't even try... Sigh....

Recently there was an episode of 99% that touched on this. https://99percentinvisible.org/episode/the-country-of-the-bl... In it they refer to country of the blind (https://www.penguinrandomhouse.com/books/635964/the-country-...).

Consumed them both and found it pretty interesting. I’m not going blind though, so not sure how helpful it is for someone so is, but at least it will show how Andrew dealt with it and still is.

The real answer is to get her to a rehab center for people losing their vision. There's plenty of accessibility software and tools out there, but the best way to figure out what will work best for her is to get the knowledge from other people who have gone through the same thing and to work with experts who know how to handle the transition.

TL;DR: Accessibility settings can be super powerful but so hard to learn that, without either an experienced trainer or a determined learner, they’re useless. Does anyone have recommendations for learners and amateur (family) trainers?

To the OP: I’ve been in a similar situation with my mother. Unfortunately her loss of eyesight happened so suddenly that we weren’t able to follow the excellent advice to get her started on the technology adaptation before her eyesight (mostly) went.

I’m hoping that our negative experiences here can be a warning to others. The primary lesson is this:

Apple products, especially the iPhone, have the best accessibility features for vision-impaired users. Unfortunately, getting fluent with those features requires lots of time and training. If your mother isn’t able to reach that fluency, she may end up not using the devices for more than a couple of basic tasks.

I recommend finding videos of experienced people with impaired vision using their iPhones, because it’s quite amazing: they can feel their way around the UI with tactile feedback, and read via text-to-speech that’s often running so fast that it sounds like brief bursts of noise if you aren’t used to it. We’re used to Apple devices being super-constrained in customizability, but the Accessibility settings provide far more flexibility than the rest of the UI settings. (This is a double-edged sword, which I’ll get to.)

We were hoping to give my mother that ease of use with her phone, but first we had to move her to a new iPhone from an old Samsung. We (her family) were very time and energy constrained, so didn’t complete the first and most basic step: moving her fully from one phone to the other. This meant that she kept using the Samsung by default, and effectively got no experience with the iPhone.

Even with the iPhone in hand, there’s a bigger problem: no obvious route to go from a standing start to a trained-up user. I found very few good guides to using the low-vision features, and even when I had them, I didn’t know how to start training my mother. The double-edged sword I mentioned earlier is that the Accessibility settings are copious and complex, and if you don’t know what you’re doing, it’s easy to accidentally switch the device into a usage mode that’s hard to understand and even harder to turn off.

If your mother is sufficiently motivated and downright brave enough to experiment with the settings and learn them for herself, it _might_ be possible. But I can see a hundred reasons why that might not be the case. Modern technology is terrifying enough for seniors as it is. So I’d start by looking for in-person training help in her area.

My mom went through a similar path, so here are some details I haven't seen already mentioned:

* Not too many people know that losing your eyesight is often followed by nightmares. The moment I told my mom this fact she stopped having them.

* The "problem" with suggesting Braille is that it requires an acceptance that one has lost their eyesight for good, which is a difficult step for many. So audio solutions could be better in the short term. The same goes for training for how to move around using a white cane.

* iPhones have a feature called VoiceOver that lets you use your phone without looking. My mom never really got the hang of it too much, but she definitely uses Siri a lot. Android has something too, but last time I checked it was not as good. Being able to take short and long notes (voice notes, small recorder, whatever works) should be a priority.

* If you install a screen reader, I encourage you to use a Linux laptop. Windows has a tendency to move things around for no good reason (and God have mercy if your OS auto-updates), which breaks my mom's muscle memory of how to open this or that program.

* Audiobooks: I typically convert EPUB/MOBI books with Calibre to DOCX, put them in a shared folder, and she uses the screen reader to hear them. I also use the same shared folder to download podcasts. Alexa didn't work well here at all, but that's because Alexa in South America sucks. Your case may be different.

* Be ready to curse whenever some clueless news anchor talks about a "miracle bionic eye" while praying that your mom doesn't hear about it. Having to be the one who's constantly shooting down someone's last hope is not cool.

I submitted a similar question here 8 years ago. You can check the answers here: https://news.ycombinator.com/item?id=9546311