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.
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.
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.
These treatments are becoming mainstream, as in approved by regular healthcare providers such as NHS.
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.
Teach her how to text you and listen to audiobook and podcast using smart speaker.
All the best, not sure if it is helpful at all but its all I could think up <3
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!
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.
Additionally, I would strongly recommend seeing a rehabilitation counselor at some point. They might also be able to better tools.
https://www.aao.org/eye-health/news/red-light-protect-aging-...
https://www.aao.org/eye-health/news/red-light-protect-aging-...
s/looking/loosing/
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.
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.
- 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?
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 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....
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....
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.
* 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
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.
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).
TECHNICAL
1. NFC/RFID stickers/buttons on objects can trigger iPhone shortcuts with custom text-to-speech audio and other automation. e.g. tape NFC tag on Owen Mumford Autosqueeze holder for eye drop bottles, to describe name and dosage.
2. Alexa ecosystem supports streaming radio/podcasts, cable TV (via Logitech Harmony IR remote), audio alerts from Google Calendar, microwave control, landline phones, 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 action, hourly time cues, zigbee PIR motion sensors for Echo-as-Zigbee hub (less cloud/app creep), ultrasound motion sensing by newer Echo Dots, wifi power plugs.
3. Be My Eyes - free, global remote volunteers help via smartphone camera.
PHYSICAL
Interior guide hand rails /w tension rods + Wall Nanny
Tactile paths/guides on floor
PSYCHOLOGICAL Counseling for learning about canes (folding, telescoping, rigid)
Support groups
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. 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 even with the loss of eyesight.
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.
http://doctoryourself.com/eyesight.html http://doctoryourself.com/eyesight_II.html
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.
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.
- 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.
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.
The other advantage is it can help offset "old person neck" by making you look forward, not down.
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.
* 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.
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.
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.
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.
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.
And his book - https://www.amazon.com/Country-Blind-Memoir-End-Sight/dp/198...
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.
Unfortunately, it's just a stopgap. It doesn't stop the process.
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...
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.
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
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
[4] https://www.qac.ac.uk/exhibitions/sight-village-southeast/3....