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Ask HN: My mother is slowly losing her eyesight, how to prepare?
249 points by BrandoElFollito on Aug 28, 2023 | hide | past | favorite | 131 comments
Note: this is different from a few previous Ask HN posts where the impacted person was technically apt (if not a geek). Here this is for a typical older person whose technical capacities are small.

My mother has a degenerative illness that is slowly going to lower here eyesight (starting from the center of the retina). We are not sure how far this is going to go.

She is an avid reader (several books every month) and this is what I would like to address in the first place. Then there are the other aspects that are less technical but are very much welcome as well.

She reads on a Kobo (or similar device) and the fact that she can make the fonts bigger is already a good thing. She will probably continue to do so (hopefully to get to the point where she will have to spell each word...).

She also solves quite a lot of "literature oriented" quizzes (similar to crosswords) - today this is on paper but I will need to find a way for her to move online.

I would appreciate any tricks or solutions for non-technical people like her that could make her life easier.




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


You can slowly work towards braille without overtly using braille. Adding some sort of unique tactile feedback to spice jars for example. While you can certainly add a braille label to them, you can also just use embossed jars/lids, or stick multiple nibs to the top (1 nib = salt, 2 nibs = pepper, etc). Getting them used to tactile feedback being a good thing to look for can go a very long way to accepting that braille is an enjoyable next step.


Grandma had a terrible time using the microwave. I eventually found out that there are microwaves that have only two dials, one for power on top, which we left alone, then the bottom one was time. Knowing how far a quarter turn of the dial was in minutes allowed her to still cook things when she wanted to.


My microwave has an on button that immediately starts, with a 30 second timer, and if you press it while it's running it adds more time.

If someone is good with tactile stuff the dial might be better though.


Part of the problem with the flat buttons you touch is that you can't really tell where they are. A dial was much easier for her to understand than trying to manage to remember where a dozen buttons are and what order they're in.

We got the microwave with the dial after she accidentally microwaved something until it caused a fire in there which flooded the room with smoke and was so bad I had to simply throw it out.


If I wanted to use my stove, microwave or dishwasher (all flat buttons), I might try to put a little Sugru on the surface to outline the important ones like the +30 seconds button.


We did that, but the old one didn't have a +30 second button and just had little sticky pads on every button, since you had to use numbers, which didn't make it clear what was what. And some things have 9 at the top, others put it at the bottom, so it's not that hard to forget.

Either way, a physical dial was much easier to use than trying to remember the layout of the number pad, which button is power/cancel/etc.


They have tactile stickers specifically for this kind of thing, I think they even have different textures a blind person can distinguish


My mom has macular degeneration and she loved to read.

At first I bought her an e-reader and a subscription to a library that had more ebooks than our local library. That gave her access without driving and she was able to adjust the font, font-size, contrast and brightness to her satisfaction. That worked for several years.

My backup plan for things getting worse was to move to audiobooks which she refused to try earlier because it felt like giving up to her. Braille was out of the question. Unfortunately vision loss is often, but not always, a precursor to dementia which I now know. She slowly stopped most activities she enjoyed entire life.

In some ways, attitude it the most important tool. Acceptance of things you cannot change, adaptability and creativity to handle unexpected events along the way, and compassion to support her in her journey.


+1 for audio books in general. Proper audio book recordings with good narrators are so freaking awesome.

My favorite narrators (that I follow more than authors them selves):

- Ray Porter

- Jeff Gurner

- Tim Gerard Reynolds

- Carl Prekopp

Plex (media server) and Prologue (audio book front end) on iOS is a magical combo.


I joined Audible a few years back and although most narrators are OK, I noticed very quickly how a bad narrator could ruin an audio book. I started paying attention to who the narrator was, and Ray Porter immediately stood out as one of the best. Someone else must have noticed too, because he's narrated a surprising number of the books I've read so far.


Definitely. He is one of the narrators I will follow and listen to specifically for the performance.

Scifi plus Ray Porter? I'm in for the whole book.


Also:

- Neil Gaiman (especially stuff he's written)

- Stephen Fry (could listen to him read a phone book)

- Wil Wheaton


I love Wheaton in a few audiobooks that I've listened to him in. I didn't love Ready Player 2 but he made it more enjoyable.


I've been listening to the Aubrey / Maturin book series by Patrick O'Brian, narrated by Patrick Tull. To my untrained ear he seems to do a good job with the various UK accents of the different characters, as well as various other Europeans.


> If you install a screen reader, I encourage you to use a Linux laptop.

For what it's worth, the ChromeOS built-in screen reader seemed surprisingly powerful (to me experimenting as a non-blind person curious about the space; no idea if it's actually useful to a blind person). The UI is also pretty simple, so it could be great for basic web browsing needs.


One other thing — people losing their vision can have visual hallucinations when awake as well - it’s called Charles Bonnet Syndrome:

https://en.m.wikipedia.org/wiki/Visual_release_hallucination...


The iPhone also has a speak screen functionality (separate from VoiceOver) that’s great if you want your phone to read a website or book to you.


Also see if she is or will be eligible for the NLS Bard. It provides a wide selection of audio books and periodicals gratis for the blind.


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.


Interestingly Lego just announced they're releasing a block set to help kids learn Braille. From what I can tell it comes with 5 full sets of alphabets and numbers so you should be able to form most words. But I could be misreading the product description haha

I figure it's worth throwing out there in case anyone was curious to learn it and finds having the tactile option of putting the blocks together as potentially helpful

https://www.lego.com/en-ca/product/play-with-braille-english...


Good, since previous sets were limited to an unusable subset like "⠿" ("for").

I believe they also encourage learning to read Braille with your bare feet in the middle of the night.


It’s remarkable how much sympathetic pain the phrase “stepping on a Lego at night” causes


This set has been out for years, but previously was only available via specialty channels, and almost unheard of in the USA.

It's good to see it get a wider distribution, even if many will be snatched up by AFOLs (adult fans of LEGO) to build weird contraptions.


It's wild that a device made for people with vision disabilities decided to have one of those scroll-through-animation websites.

That's probably the most obviously bad web design ideas I could imagine using.


Realistically, how much time would it take for an adult to pick up Braille and to be able to read fluently?


As a teenager I picked it up in a few weeks of halfhearted practice while visiting blind relatives. It was a struggle for a few hours until it “clicked.”

It’a not like learning a new language, just a different alphabet with mostly 1:1 substitutions. (I figure most punctuation out from context.) It’s like learning Morse code.


What's the best way for a sighted adult to pick up Braille?


A book, but you may find useful to be able to write short texts in Braille also so you can fix embossed tags and notes in parts of the house to help when you aren't around.

TeX/LaTeX can write braille (that you can later print with a braille printer).


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.


Where was this? This sounds like classic US healthcare, although I suppose this happens everywhere. I have come to greatly distrust doctors these days because of exactly this scenario.


Thanks - out of curiosity what was the correct diagnosis?


https://en.wikipedia.org/wiki/Arteritis#Temporal_arteritis


My grandfather had a form of this! Luckily it was treated quickly, but he also ran into issues convincing the doctors that's what it was. Not sure why.


American doctors, working for a large or investor-owned health-care organization?

In hindsight - the hospital that "took care of" my mother made ~100X the revenue running expensive tests on her - in just a week - compared to what an honest, competent doctor would have made over the first year of successfully diagnosing and treating her.


Why is loss of eyesight not listed among the symptoms or consequences?


Because Wikipedia is a so-so source of medical information?

Damaged to eyesight is the first bullet point here...

> https://my.clevelandclinic.org/health/diseases/15674-tempora...

...and the last bullet point here...

https://www.mayoclinic.org/diseases-conditions/giant-cell-ar...

...and the first "if left untreated can cause" thing mentioned here...

https://www.webmd.com/heart-disease/arteritis-giant-cell

...and you probably noticed that all 3 of those prefer to call it "giant cell arteritis".


Because no one took the time to find a high quality secondary source and add this fact to the article yet.


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?


A lot of good advice here but

> What opportunities are there for this also becoming a new, exciting chapter in life

I strongly, strongly advise caution with even bringing up a hint of "losing your eyesight could be an exciting new adventure!!"

It's pretty poor taste to try and find the upside of someone going through something that is likely traumatic for them. If they find some upside on their own you can encourage it, but that's all.


Fully agree, which makes it feel weird to re-read my own comment and for it to sound so off-tone.

If I were to re-write the comment I'd say something along the lines of, "In time, there may be new opportunities worth exploring."

What's on my mind is that while by no means one ought to give up on the things in their life that may provide a sense of identity, those don't have to be your only possible source of identity going forward. Even that requires the most careful and gentle of touches. Identity is so important and not something you can just change so suddenly.


I found a bit of humor in this:

>Does she use Siri/Alexa/Whatever regularly? ... Jeopardy! is great because you can be blind and still follow 98% of it.

you just suggested Alexa Trebek!


"What is an unintentional pun?"


> any tricks or solutions for non-technical people like her that could make her life easier.

PRODUCTS

1. NFC/RFID stickers/buttons on objects can trigger iPhone shortcuts with a single tap, e.g. custom text-to-speech audio and other automation. Tape NFC tag to Autosqueeze holder for eye drop bottles, to describe name and dosage. Or sew on clothes. Allows "audio annotation" of places, e.g. "This is location X. Foo is on the left. Bar is on the right."

2. Alexa ecosystem supports streaming radio/podcasts, cable TV (via Logitech Harmony IR remote), audio alerts from Google Calendar, microwave control, Echo Connect for dialing landline phones with numbers from cloud contact list, scripted audio (e.g. "where is ABC" can trigger an audio response from a distant Echo near ABC, older Echo Dots are small/cheap/mountable), big wifi buttons to trigger any Alexa script, hourly time cues, ThirdReality PIR motion sensors for Echo4G-with-Zigbee-hub (less cloud/app creep), ultrasound motion sensing by newer Echo Dots, wifi power plugs, zigbee reed switch for door open announcements.

3. Be My Eyes - free, global remote volunteers help via smartphone camera.

4. Automated medication dispenser, loaded by caregiver or delivered by pharmacy + subscription service.

5. iOS 17 Apple Magnifier is adding a point-and-speak feature to point at any real-world text and have the phone camera read it out loud.

PHYSICAL

  Interior guide hand rails /w tension rods + Wall Nanny
  Tactile paths/guides on floor
PSYCHOLOGICAL

  Counseling for early training about canes (folding, telescoping, rigid)
  Support groups


Thanks for recommending Be My Eyes! I would have never known it existed if not for you. I'm very much looking forward to helping people :)


One of my Mothers-in-Law has macular degeneration. Her vision in the time I've known her (about 7 years) had declined significantly. (She's now about 77.) She could drive during the day in good conditions locally a few years ago but has given up driving entirely in the past 18 months.

She still has some vision but would be legally blind at this point, I believe.

A few years ago we bought her an iPad which has some assistive technologies (e.g., magnifier) that she says have helped her immensely. (She has an Android and prefers that but the iPad has been the best option for a tablet.) I realize "buy an iPad" is pretty basic, but it really seems to have made a difference.

She also uses an app that magnifies print, etc., via the iPad camera. We also got a "3-in-1 craft lamp" that has a clamp, light, and magnifying glass with a light[1]. (Can be mounted in 3 ways as well.)

Start trialing and introducing assistive technologies now before the need is more profound.

[1] https://www.amazon.com/gp/product/B0782TWR13/


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...)


Have you looked into streaming devices so she can watch movies and tv with audio description? I'm totally blind and the availability of audio description on all major streaming services has made tv watching a lot better for me.


Do the descriptions interfere with the dialog? Are they recorded human voices or computer generated?


Descriptions are read by a human narrator. Description only occurs when there is no dialog. According to my sited wife it's not that distracting, she got used to it after a month or two.


Vision buddy looks very cool. This is what I had hoped Apple's headset would be.


My mom is mostly blind. If your mom is in the US, The American Council for the Blind is a really great organization. You can give them a call and they'll set you up with someone to get your mom evaluated for her needs. They can put you in touch with professionals to get her assistive devices that are often available at little to no cost, connect her with resources, and more. I'd definitely recommend going that route, because they have the process pretty well streamlined and have a ton of experience working with folks with very different needs.

I'll also note that there are a bunch of great podcasts from blind folks that have tutorials and other information. There is a huge and vibrant community of blind podcasters; if she's into that, I'd definitely point her their way.


I'll echo this. I've been legally blind my whole life, and I received a ton of assistance throughout school and college. This was mostly via my state's Commission for the Blind but I think most states have something similar. They not only can provide assistive technology devices, but also things like Orientation & Mobility (O&M) training to help with navigation, life skills (like cooking), etc.


Move her to a better location now. I don't know where she lives, but that is a factor. Get her someplace where she can depend on public transit for everything and not miss the car. Many downtowns have great transit, but there is no convient grocery store, or if there is it is the high priced luxury store. Many transit systems don't run on Sunday, so she won't be able to get to chruch. (What other activities doea she do that are not 9-5 that transit does well?)

If you have to move her far, look for blind support in the area. People and friends in her new location are important to making it feel like home. Make sure you can visit, and also other family.

Other have addressed reading better than I could so i'm giving a different food for thought.


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.


>> I'm losing my sight. How should I prepare?

> Learn to touch-type.

What a quintessential hacker news response! Losing your sight is a profound loss, involving grief and other emotions, not just the facility but all the people, places and things that gave you joy to see. You are losing your independence, the ability to move around your own house, to cook things safely (and to see when they are done). You lose the ability to drive.


? I think my comment offered a bit more than that.

I suffer from Keratoconus and have had to deal with the diagnosis that "you may be blind before 30". What I offered are two of my personal ways of dealing with that very same reality. Touch typing has meant that I can write confidently even if I can't see what I'm writing. And using devices + text-to-speech in a way that expands on existing reading habits seems like a reasonable way for their mother to adapt to the use of speech as a replacement for reading.

> Losing your sight is a profound loss, involving grief and other emotions,

The OP was specifically looking for "any tricks or solutions for non-technical people like her that could make her life easier" not psychological assessments and suggestions.


Just a note, it may not apply in your situation but for anyone else reading the thread that may not be aware -- there is now an injection for at least some forms of Macular Degeration. My brother has been getting these injections and it has been keeping his MD at bay for several years. Truly life-changing advancement. I encourage anyone exploring MD treatments to be sure to ask about it.


Again depends on the type of macular degeneration, but the injection (even scary at first) is working well to slow the loss of vision. Injection can be done every 3-4 month.


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.


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.


"Our Independence Training Program (ITP) is designed for blind adults (18 years of age and older). Typically students complete the program in six to nine months while residing in nearby McGeorge Mountain Terrace apartments, which are owned by the Center. Participants not only build the skills that they need to be independent, but also focus on gaining confidence and belief in themselves as blind people."

https://cocenter.org


This is what I was looking for. Look for a school of the blind, ask the doctors/hospitals for local resources, etc.

There's a strong community of people who have already helped other going through this. If you're really not finding anything, just try one of the large national organizations, and they can help you work down towards your local resources.

Based on my limited exposure to the blind community through raising Seeing Eye Puppies and having a relative who was born legally blind without glasses.


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.


I agree about seeing a rehabilitation counceler. While it's good that your concerned about her vision loss as someone who isn't blind or trained in teaching blind individuals independent living skills you don't know the questions to ask for things as simple as how will she cook a meal on her own, match clothes etc. while reading is important basic skills so she can continue to have independence is also important.


You could also look at screen readers, BTW. Can recommend Google TalkBack for Android. iOS has its own which is also quite good based on what I've heard.


Voiceover on iOS is really good. I'm totally blind and have been using it since 2010. One thing to consider is that when using a screen reader bigger may not be better. When I've used an iPad, I've had issues with spacial awareness finding things on the screen because it's so large. I don't have these issues on the iPhone. I realize that if someone still has some vision then bigger may be better.


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.


For people with any disability, habits, routine and familiarity are enormously helpful in maintaining the ability to operate independently. Survey her current life and figure out what routines she currently has which can be maintained as is and which ones can be maintained with a small tweak.

Be prepared for even small changes to start taking more time and repetition to successfully incorporate. Plan for this and encourage her to develop a process now for accommodating this new reality.

Giving up too quickly and not having a comfortable process for this can make a disability much more impairing than it really needs to be. Expect to need to introduce an idea or technology and give her time to get around to it. Expect to remind her "You could do just the first step on that." or "You could do just the next step on that."

People who have been able-bodied are somewhat inclined to not persist when things start taking more time and effort to incorporate. This expectation that it comes easily and quickly or you don't bother can rapidly curtail life far more than necessary as your abilities degrade.

As for reading, audio books are a thing and are used a lot by visually impaired people.


Get her connected to the local blind community. Listen to them.

Smartphones are amazingly accessible, even for fully blind people, so the sooner she can start getting used to the accessibility features on her preferred platform, the better. (Apple was there first, so many prefer Apple, but they are basically interchangeable now).


A few people already mentioned video magnifiers, which are basically a screen with a camera to magnify stuff like books, letters, pillboxes, ... [1]

My grandmother had a professional video magnifier and it helped her greatly to deal with her macular degeneration and allowed her to read and write letters or fill forms, so that should cover the quizzes. She used it about an hour per day and handled it surprisingly well given that she'd avoid most technology, e.g. handling a tablet would have been unthinkable for her.

Prices for new video magnifiers are in the thousands, but used ones are often available cheaply on ebay, and some health providers may cover part or all of the cost as well. You can also try to build your own, like my simple Raspberry Pi based approach [2]. The documentation is a bit old, it lacks the new autofocus camera and a basic text-to-speech implementation.

Other alternatives are tablets / phones with the accessibility features as mentioned by others, or bigger arm-mounted magnifying glasses that are used e.g. in nail studios.

Usually local or national organisations for visually impaired can give concrete advice, and some bigger events have a good overview of the overall space of assistive aid (e.g. in Germany [3], UK [4]).

And to repeat others, there are some good treatments available to slow the decay under certain conditions.

[1] https://shop.rnib.org.uk/magnification/magnifiers/electronic...

[2] https://github.com/ctrlw/magni

[3] https://sightcity.net

[4] https://www.qac.ac.uk/exhibitions/sight-village-southeast/3....


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


I’m in the same boat in that I’m losing my vision very slowly from an inherited retinal disorder. One thing I’ll add is I’ve started going to the gym as much as I can while I can, I figure I’ll be much more confident once blind if I have good core strength, and it’s probably much easier to learn good gym habits while sighted.


Near or totally blind persons can still get excellent coaching, but the most effective method involves physical contact. Some coaches aren’t willing to do that though.

That’s true for sighted persons too. There is a pretty easy coaching technique to stop “butt winking” by providing pressure feedback, but that means the coach is has to have permission and be willing to push on the trainee barely above the buttocks. Needless to say most coaches in the USA don’t want to risk it.


Sorry to hear about your mother.

PJ Vogt (of former Reply All podcast) recently did a really thoughtful podcast about "What's it like to slowly go blind?" He interviewed Andrew Leland who shared his own experience with slowly losing his eyesight. I really appreciated the discussion in this podcast and it helped me gain better respect for the challenges that blind people may face.

https://podcasts.apple.com/us/podcast/search-engine/id161425...


I had an Aunt who went blind. She said, "Losing your eyesight makes life more dull."

But she made the best of it and even managed to cook like she used to.

I also took care of my neighbor's blind dog and observed how she gets around.

Here is my advice:

1. She should learn her surroundings of where everything has its general place in her home. She can do this by closing her eyes and learning where everything is.

2. Keeping things to a particular pattern helps, such as top shelf, left cabinet contains all the cups, the shelf above it contains all the bowls, etc.

3. Enable the reader on her laptop and let her get used to using it and assisting her.

4. Start now because it takes time -- get her a trained seeing eye dog who will help her get around a lot better.

5. When it comes to hygiene, and surroundings, she needs to learn her bathroom including the location of everything, how to wash, etc.

6. She should start learning braille.

7. There are things called "blind tags" or "blind safety tags" that "feel" like different patterns or even contain braille that you can put on things so she can "feel" her surroundings.

8. Get her a walking cane so she can start learning how to use it.

Hope some of these might be helpful or give ideas.


Starting stages of retina damage myself, which started coming to a head about 2 years ago... Not sure about corrective lenses, but as you are already using a book reader that can change the text size, that's a good start. Would also look into devices that have integrated text to speach. Not sure what to offer beyond that other than empathy.

Some critiques of what I've noticed in the past couple years. Scalable UI/UX is generally hit or miss, I absolutely hate applications that don't scale, and more so platforms that don't scale (steam deck, I'm talking to you here). Too many apps in Android don't respect font/text size settings. Too many websites use tiny little font settings and don't scale at all. I've gotten pretty good with triple-tap to zoom on my phone.

Low contrast text sucks beyond believe, it's really bad when I can't read the CC# on a physical card because it's really low contrast text.

Aside, I'm still able to work, though on a 32" 1440p display, I still have to zoom in/out a lot as my vision quality varies throughout the day quite a bit. I'm frankly terrified as I'm not sure what I'll be able to do with work should my vision get much worse... I'm working as a contract very sr/lead/staff/architect level, but less productivity with many dr appts every month, and current job wrapping Thursday. It's frankly hard enough to get up in the morning and I'm not sure what I'm going to do.


Mycroft.ai has a quest to produce a 'local' speaking and listening AI assistant that is free of the constant tyranny of cloud access and the present push to tie functionality to Internet access. Its platform contains elements (like Mimic3 TTS) that are functional in their own right. If you can, you should attempt to build a configuration that is useable by your mother and can have cheap equipment spares, works on and off the net. It does not have to be a standalone widget and could be a suite of software you and your mother develop.

Eventually it will have to be a menu driven voice steering system that delivers her into existing media (like commercial audiobooks), can speak from her library of text-only sources and keep her place, and can read off the screen on websites (such as news) for which the format is completely predictable.

The Cloud is host to many smooth voices for which the mechanics will never be known to you or hosted on your machine, but I found Alan Pope's voice as reconstructed by mimic3 ( https://popey.com/blog/2022/10/setting-up-mimic3/ ) to be a fantastically understandable and versatile one. I've produced hours-long listenable audio files from it.


Android Live Transcribe works offline now on some phones. Seems like offline features are getting more popular.

I would imagine Apple has some stuff. I wouldn't be surprised if you could do everything you described offline with just Google or Apple stuff. Much as I hate Apple I suspect an iPhone would be better.

Does Mycroft AI work well/at all on mobile(No extra battery drain, etc)? If not, what happens when she travels? Why should she have to lug around extra stuff?

Unless she's a fairly strongly privacy-interested type, doing any original software, or in depth configuration even, seems like a bad plan if existing stuff can do it.

What if you're busy, and it crashes in a way that's hard to recover from without eyesight? With Commercial tech everyone knows, any friend can help her.

Most people don't appreciate tech toys as much as people on HN do. They don't care if it's open source, private, and you can see the code and improve every part. They're users, not FOSS philosophers, and they get annoyed if you put code before convenience, maybe even feeling like you're making their situation a Jimmy Neutron episode, just another chance to tinker with broken apps.

But I could be totally wrong and Mycroft could be doing something absolutely amazing that would really help a blind person. I'm neither blind, nor a Mycroft user, nor an accessibility expert.

I do see blind YouTubers who seem happy with their iPhones though.


For readers, obligatory reminder that if you haven't had a dilated eye exam in a while you should get one, especially if you have a family history of eye disease such as glaucoma. I was diagnosed with open angle glaucoma in my mid 40s and now take drops. Turns out my grandmother had it, though only one person in the family (my aunt) knew this. Open angle otherwise has no symptoms and if untreated can lead to blindness. There is another form, closed angle, which is painful.


She might not be suffering from glaucoma, but the podcast associated with this site https://www.diagnosisglaucoma.com/ has e.g. episode 24 talking about vision rehabilitation, which seems to be exactly what you're asking about. See also episodes 29, 30.


If you can't find accessible formats, or you want to look at small physical things like a receipt, photo, notepad, crossword or other small item, you can magnify things using a digital overhead projector. Basically a camera on an arm that looks down on the book or item, and you project the video onto a wall. Sometimes used in lectures in place of an overhead projector. You want to find a camera with a wide depth of field to avoid fiddling with focus the whole time and a screen or wall coating that looks good to the user.

The other advantage is it can help offset "old person neck" by making you look forward, not down, and you can interact with the item, for example by writing on it, without faffing about with a keyboard.

Obviously doesn't work for full blindness, or if only near-focus is possible, but magnifying something up to 8 feet across goes some way.


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.


Can someone change the title of the post please?

s/looking/loosing/


losing*


My grandad lost his vision suddenly, and was a big reader. I live in the UK, so YMMV but there are some brilliant charities and national schemes providing access to audio books for registered blind people. I'd recommend those hugely as they where brilliant!

Also, there are a fair few "gadgets" around every day tasks that become tricky or dangerous when your vision is impaired (such as pouring a cup of tea from the kettle). If your mother knows she's losing her sight, she has a good opportunity to learn to use those in a risk free environment and be confident when she needs to use them. It sounds like you're already pretty organised, which is great! Its definitely worth thinking about the everyday tasks that give your mother independence, and thinking about his to perform them without sight.


This happened to my grandmother during the end of her life. Most people don't realize that many blind people retain some sort of vision or light perception.

- If you write her letters or need to write anything on paper for her, buy some black roller-ball or gel pens from an office supply store, ideally the 1 mm stroke width ones. These were as good as the pens we got from the eye doctor. - Libraries often have resources for the blind or hard of vision (large print books, audiobooks, audioplayers with analog controls). HN tends to go for technical solutions but it's really up to the person using the solutions what they are most comfortable with. - Your local society for the blind has people who have been through this before, which is important both for your mother but for your mental health as a caretaker.


Two things:

1. I experienced rapid vision loss during an acute diabetic reaction to starvation re-feeding, and getting insulin sensitivity back might be the best way to protect the eyes. Consider metformin in addition to the obvious diet and exercise.

2. I didn’t actually come here to suggest metformin. I clicked because of the heading typo, which smells to me like a type of auto-correct error that seems to be more common in neural network-based systems. That is, the suggested word is related to the context, but non-sensical. I’m constantly re-correcting bad suggestions now, even when I correctly type exactly what I want, sometimes several times on the same word. I think it’s making autocorrect worse, and mistakes more common and harder to spot versus the models based on closest word neighbors, or smaller contexts.


Let's see:

* A bunch of local to regional to national groups already exist, so find and enlist them.

* Now's the time to streamline the living environment, round any sharp corners, and so on. If Braille is in the mix, consider a Braille label maker.

* Strike while the iron is hot: balance training.


> Strike while the iron is hot: balance training.

When I moved my allergies racked up two notches and I was flirting with vestibular disruption on a weekly basis. Then I started a new medication that had 'nausea' as a side effect, and that turned out to be a lie. It's not nausea it's vertigo.

If it weren't for years of tai chi I would have fallen badly a couple of times. Particularly in the dark. It turns out I use the soles of my feet for balance now more than my inner ear.

The good thing about tai chi is that with the right instructor, it can be literally hands-on. My first instructor would have us feel how the movement went. Saved weeks of show and tell every time. And corrections are done tactily, not visually.


If ARMD, that can be a serious condition.

Removing physical barriers is the one that requires the most effort, and should be done as early as possible. Replacing stairs with ramps, moving or removing furniture that's hard to navigate around, adding hand supports and guides, removing any flooring transitions or lips that a person could stumble on. Those should be top priority as they have an adjustment period which is much faster while still visible. She will have a mental model of her home prior to loss of sight, makes it much easier to continue living and functioning in the same space after losing eyesight.


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.


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


My company offer a custom version of the Talkie OCR app (https://i2s.symisc.net) for vision impaired persons. Basically, the app require minimal interaction with the end user. All he has to do is: Tap a single time anywhere in the screen to launch the camera, take a picture of the book page, magazine, or note, and the documented shall be automatically scanned, and played back on her favourite language (with built-in translation).


Here is a good podcast from 99 Percent Invisible - https://99percentinvisible.org/episode/the-country-of-the-bl...

And his book - https://www.amazon.com/Country-Blind-Memoir-End-Sight/dp/198...


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.


There are injections available every 6-8 weeks that can stop progression and maybe heal the damage to some extent. The big question is will Medicare cover it. My mom has triple coverage so she might not be the typical case. https://www.verywellhealth.com/macular-degeneration-emerging...


Instead learning the "new norm" every couple of years. Which can be discouraging. Just prepare for the end, total blindness. Aka pay the toll once.


https://play.google.com/store/apps/details?id=vOICe.vOICe&hl...

This app converts visual scene as seen from phone's camera to audio. Soundscape of a kind. Not sure how useful this is but I have been hearing about this app for quite a number of years.


My mother suffers from pattern dystrophy, similar to macular degeneration but without an available treatment. Though she is now legally blind, she has practical vision remaining. For reading, she uses several visual aids -- large iPad for ebooks, magnifying glasses, and has a very large screen television used both for entertainment and as an extended computer monitor.


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-...


Conversely, blue light is harmful. Worth looking into it. Red light is absolutely safe for the eyes IME at any dose. It does feel very good and healthy, for whatever it's worth.


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”


If she's traditionally used toilet paper, perhaps install a bidet attachment?

Not to be gross, but it could make her require less help after using the bathroom. It also means she won't be dependent on someone hunting down a roll of toilet paper if she runs out.

Caveat: I have no experience dealing with eyesight-related disabilities. So I'm just guessing.


Bit of a left field suggestion but I think it may make sense to spend a day with a blindfold. That should very quickly highlight which parts of the house are problematic and give loads of time to sort it out.

As for reading - text to speech tech is getting better by the day so a mix of audio books and TTS should fill that gap


I am in the same situation. My dad lost his vision recently and can’t interact by touch screen due to nerve damage from a life of physical labor. I tried a game controller with switch control on a iPhone but that was too complex, so now he’s focused on things Siri makes possible. What got him recently is a phone menu asking to dial digits. We solved this by programming the number into his phone to automatically pause and then dial the right numbers to get to the operator. I now think a t9 keypad accessory for iPhone would be the best for him but I haven’t been able to find one. I am hopeful about the new simplified interface on iOS being released in iOS 17. Design for voice isn’t present in many apps and the complex layouts aren’t easy to map in your mind.

I think some Siri Shortcuts could be helpful for your mom. My dad is diabetic so he uses a ‘hey siri check my blood’ to know what he’s at. In his case he needs full time care at this point. For entertainment, he listens to books on tape from a tape player with giant buttons he got from the association for the blind. He got an audible subscription as a gift, but uses the tape player instead of trying to figure out the tech.


Two ideas from similar experiences, with macular degeneration 1. Stronger magnifying glass with flashlight, so can read from the side of the eyes easier. 2.We noticed that when we switched from the modem tv, digital displays, etc to an old fashioned (cathode ray tube) massive tv, it was much easier to see and watch.


My condolences. When you learn more, would you be able to send tips along to me? I maintain an open source care plan template to help people with aging parents. https://github.com/joelparkerhenderson/care-plan


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.


My partner's mother is going through this as well. She gets injections directly into her eyes every so often. They've not halted her progression completely, but before she was getting the treatment done, her doc told her she had ~2 years of vision left. That was nearly a decade ago and she's still busy crocheting stuffed animals for all the neighborhood's children.


Not much else to say other than this and "start moving to audio media".

To elaborate though, diet, sleep, absence of stress, etc will have a much greater impact on overall health than any medication (except in trauma scenarios) and most doctors don't focus on it. I am not talking about "wholistic" stuff - just cutting all sugar / processed carbs, getting enough protein and vitamins, sleeping 8 hours, clean air, low noise/stress.


I don't think you'll find scientific literature to support your point.

Living the most stress free life will not prevent your macular degeneration from progressing.


Think about how she navigates her house and ways to help her with that. Would she feel more comfortable with additional rails on stairs, bars in the bathroom?

Things like more compartments in her kitchen dresser drawers to help with sorting?


If it happens to be AMD, there are promising new treatments in testing. This was just posted today:

https://news.ycombinator.com/item?id=37295409


Not sure if it's eye disease alone or something else.. but my friend has Keratoconus and after getting super strong contacts her vision is no longer blurry and nor is poised to lose per diagnoses she was given years back.


If she has macular degeneration, there are some "treatments" that can gain you a couple years such as rotating the eyeball 90 degrees.

Unfortunately, it's just a stopgap. It doesn't stop the process.


Look up "library for the blind" in your location. The one near me has a lot of great resources. They have resources for anyone who is visually impaired.


Is this something that your optometrist can easily identify? I’m scared shitless of losing my eyesight and I’m already on -6 glasses.


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.


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....


I'm not sure these nutritional approaches are relevant for your Mom's condition, but they may be worthwhile looking into if they can possibly help stop or delay the progression:

http://doctoryourself.com/eyesight.html http://doctoryourself.com/eyesight_II.html


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-...


Check out Voice Dream on iOS and Macs for text to speech. I do all of my 'reading' on it.


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.


Going for practical advice:

Did you try to find those in person resources for your mother?

If so, how did you locate them?

Obviously those details are going to vary by area.


Minor edit in the title...should be losing (rather than looking)


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....


For those in the US, or with US citizenship, the Library of Congress has a National Library Service for the Blind called BARD (Braille and Audio Reading Download), which works either with a dedicated hardware player (functionally designed but with excellent usability) or Android / iOS apps. Both players and books are free.

NLS: <https://www.loc.gov/nls/>

BARD: <https://www.loc.gov/nls/braille-audio-reading-materials/bard...>

Player: <https://www.loc.gov/nls/enrollment-equipment/equipment-neede...>

The titles selection, as one might expect for the Library of Congress, is excellent. No, it's not everything in the Library, but it exceeds any other audiobook service I've found.

There's a pretty good catalogue interface. You can either order books on cartridges, or download them to a USB stick which is inserted in a port on the hardware player. For the apps, materials are downloaded directly to the device and selected for play via the interface.

For the completely blind, I'd recommend the hardware device as it's far easier to navigate than touchscreen smartphone / tablet interfaces.

Materials include not only books but many magazine publications.

Eligibility requires a statement from one of numerous specified medical professionals or caregivers, and is straightforward.

I believe OP is based out of France, which has its own books for the blind programme: <http://www.bnfa.fr/>

<https://www.theguardian.com/society/2013/dec/31/digital-audi...>

Public and academic (e.g., community college) libraries also typically have access to audiobooks through various programmes, usually commercial services (Libby and Axis360), as well as CDs. Selections through these services are typically much more restricted than BARD.

Librivox has a large selection of public-domain and liberally-licenced (e.g., Creative Commons) works. Quality varies widely but is usually listenable and is occasionally quite good. (A friend from another online community mentioned a book he'd narrated and I was stunned to find it was absolutely professional-grade work. He has an excellent radio voice, and did some professional voice-over work.)

I would strongly recommend experimenting with, using, and deciding on specific accessibility tools whilst she still has some sight. There are assistance tools for MS Windows and MacOS, as well as some options on Linux systems, and of course mobile devices. Find out what works for her now, and find out what the capabilities and limitations of these tools are.

I'd also strongly suggest switching up from a smartphone to a tablet which might be both easier to read and offer better reading options as vision degrades. I'm strongly partial to e-ink devices, though these tend to have reduced contrast. This is less an issue with "frontlight" (or auxiliary external lighting), but something to consider.

Devices with hardware controls may also be preferred to touch. Consider items such as phones, large-character keyboards, and the like.


I would step back from tricks or solutions a minute.

The problem with "slowly" is that it allows denial to set in.

The problem with getting palpably worse as you age is that it reminds you that you are going to die, and soon. It's beyond scary.

The problem with going blind is that vision is much more deeply tied to our everyday experience. Losing it is like living in mud; it constantly reminds you of your degeneration. Every movement and many interactions require it. If you're also losing hearing, it interferes with lip reading. It's very emotional.

The problem with not reading is that you may lose your daily pattern of input, the habits that orient your mind.

The problem with helping an elderly parent is that you respect them and want them to be happy and to be happy with you. You really, really don't want to get them upset, because when they get upset with you, they're cut off from the support you provide.

The problem with getting help from your children is that you've always been the helper. You may see them as accomplished adults, but still feel you need to be there for them, and guide them. Often in parenting you just have to decide, and then make it stick - any consistency is better than none.

The problem is these problems amplify each other. The elderly find it hard to be wrong, and needy, and confused, and feeling like you can't learn new things because you're only getting worse. If you try something and you can't do it, it can make your mom double down on depression and denial, to wait out death. For people helping, all this emotional work can make you avoidant, offering only nominal support.

It was a real moment when I explained all this to my mom. Denial, depression, death-panic, avoidance -- these are all normal and even expected. But she like all humans has to deal with her actual limitations. It will take time and effort, and I will help, with her guidance on how fast and what's feasible. The most important thing was for her to know I would help, and wanted to hear what she's feeling. Committing to being there addresses most of the problems.

In terms of tricks/solutions, a regular phone call is huge. She gathers her issues and we discuss them, or just keep tabs on the world. Migrating interaction to audio and voice was more helpful than trying to maintain reading in our case.

btw: someone at Apple TV needs to deeply grok that barely enlarging the selected item is completely unhelpful to older adults. Draw a bright highlight around the damn icons! It's hard to explain how aggravating it feels when trying to help someone elderly pick their damn show and they have no clue what's happening on-screen -- let alone having to wade through media upsells.


apt show festival


I don't want to say something too controversial but I know some people seem to have gotten their eyesight better after switching to a carnivore diet. Eyesight is linked to vitamin A, I'd at least try giving her a multivitamin that is correctly dosed in vit A Example: https://www.reddit.com/r/carnivore/comments/f41hww/eyesight_...

Eyesight can be improved by tailored exercises: https://zhealtheducation.com/product/the-vision-gym/ I've seen these ones recommended by a personal trainer, I haven't tried myself

Hope it helps!




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