Advice for a life with a visually impaired spouse(self.Blind)
submitted by wateeeva
Hi, I'm new here. I don't have any visually impaired people in my circle and I don't have any support group I can talk to. I'm [32 F] planning to marry my partner [40 M] who is visually impaired. He has rod and cone dystrophy and currently has around 50% vision. I'm sighted. I am aware that his sight will get bad with time. I would love to have kids with him someday. Any tips, advice, information, suggestions would help.
OldManOnFire27 points1y ago
Before I write anything else I want to thank you. Thank you for seeing the man behind the blindness. Thank you for having the humility to ask strangers on Reddit to teach you. Thank you for having the courage to love. I like you already!
I went blind 30 years into our marriage. My wife has had to make a few changes. I'm going to list them in whatever order they come to me, not necessarily in order of importance.
* She's had to conquer her fear of driving in heavy traffic * She's had to become responsible for the family budget * She helped me through the grief and depression while I mourned the loss of my vision and my potential * She acts as my sighted guide, holding my left hand while I use my white cane in my right * She has to read my mail to me * She's had to be strong all the time
If you remember the original Godfather movie you'll understand. Michael didn't want to be a mobster but when his father got shot by a rival mob family there was nobody else in the family capable of leadership so Michael stepped up during the crisis and before he realized it had happened he'd become the next mob boss. That's what my wife has gone through. She's had to take on many of the responsibilities I used to do. She hasn't complained but I can tell it weighs on her. She's a nurse. Now, thanks to my blindness, she feels like she's caring for another patient even on her days off. She's become the head of the family and there's no turning back.
I would feel sorry for her except I'm just so in awe of her! I've always been crazy in love with her but she's upped her game to accommodate my new condition and shown a side of her neither of us knew existed. She's always been the shy one, the one who's happy where she's at, unambitious and content just to be a mom, a grandma, and a wife. She never wanted to be the primary mover and shaker in the relationship but she sort of got thrust into it and she's excelled at it.
There are easier people to marry. You know this already. Blind people often feel misunderstood and lonely. We can't always do our fair share of the household chores. We are a little more needy. Our income potential isn't as high on average. We won't notice your new haircut. We'll break a toe if you leave the box from Amazon on the floor. You already understand what you're getting into, but there will be days when you're tired and don't feel like putting in all the extra work it takes to love a blind man. That's why it's important you take care of yourself. Get the "me time" you need. Keep your girlfriends close. Don't burn yourself out. My wife needs more time to recharge now that she's taken on more leadership. You will, too. Love can sustain you for a long, long time - I'm not denying that - but there's a difference between loving and recharging your emotional batteries. There's a lot of overlap but there are some times when no matter how in love you are, you're still in desperate need of a break from all the additional responsibilities that come with loving someone who's blind. And that's okay. It's better to recharge when you need to than push yourself too far and collapse when you just can't go on.
Finally, you mentioned kids. Is his rod and cone dystrophy genetic? Will your kids inherit his blindness and pass it on to your grandkids? Would adoption be a better option? The two of you should talk about this and make sure you're both on the same page.
I hope everything works out for you two =)
wateeeva [OP]9 points1y ago
Not gonna lie, I teared up right at the beginning. Thanks a bunch for your kind words. My partner was diagnosed with rod and cone dystrophy at 20. So, I'm not exactly sure if it's genetic. I was told that if it was genetic, he would have shown symptoms much earlier. We are planning to go in for genetic testing to confirm the status though. I'll keep everything you said in mind. Thanks for taking the time to reply. It means a lot :)
OldManOnFire11 points1y ago
r/Blind is always here for you. We're not just an informal group therapy session for blind people, we're here for the people who love us, too. Any question you have, any help you need, any time you want to rant or vent or celebrate or appreciate, we're here.
r_12356 points1y ago
Wow! respect to your wife sir. And, amazing post!
wateeeva [OP]6 points1y ago
I second that
rumster3 points1y ago
Beautiful.
iiooiooi3 points1y ago
What an amazing post!
r_123514 points1y ago
I am not married yet, neither in any relationship, not looking for relationship yet, just a young blind adult boy ROFL!
But, in a world which is so challenging for us, it fills my hart with joy and excitement that there are people like you, who are willing to understand us, even if they don't share our disability. Many of my blind friends are filled with so much negativity, thinking that sighted people don't consider them equal humans. Gonna share with them this thread to prove that they are wrong.
Some things that my family has done to deal with vision related challenges include:
1. Bright lights in house everywhere. 2. appropriate wall/tile color where I can see better. 3. buying accessible tactile things and appliances. 4. considering my needs/suggestions while looking for new house. 5. fixed places of remotes and things like that. Bonus is a mostly tidy house. 6. braille labeling for many things. 7. Never leaving any half opened door like that, and never putting randum objects on flore.
That last one, is most important, I hate banging my head/body on half opened doors, and I bet no person likes it either.
Living with a blind person is a different experience, adjustments and challenges everywhere. We've got to stay positive, it works out at the end.
wateeeva [OP]5 points1y ago
Well, my partner was the first visually impaired person I dated and he has treated me better than all of my sighted dates put together. Thanks for all the tips :)
vwlsmssng4 points1y ago
> I hate banging my head/body on half opened doors,
In our house, offending cupboard doors have been taken off at their hinges and left off permanently after causing injury.
River-Song-198610 points1y ago
Firstly, congratulations getting married! I am legally blind and my husband has full vision. I was the first legally blind person he ever dated. So there was a lot of communication. For example, he knows now that I need bright lights in the house. Also, we put bumper dots on the washer so that it's easier for me to use. However, the biggest thing for me was that he did not treat me like I was a burden or that I was incapable of doing things on my own. We have open and honest communication about things that I might need in the house eventually. He also knows not to move things without telling me where he put them. Also, if you are hubby asks you where something is described in detail where it is that way he can find it himself. Feel free to message me if you have any more questions :-)
wateeeva [OP]1 points1y ago
Thanks a ton :)
mcbaine3710 points1y ago
My mom had around 75% 30 years ago and can barely see shadow now. I'm sighted, so I am just giving you advice from my personal experience with her.
Listen to them. That's important. I have a family who doesn't, it's frustrating. He will most likely have a routine and it's best to not move things randomly or for no reason without discussion. She went to the school for the blind in our state 20+ years ago, that knowledge helped a lot.
Good luck.
wateeeva [OP]3 points1y ago
Thanks, will put listening right on top of the list :)
vwlsmssng9 points1y ago
Be prepared to fill your house with helpful gadgets and have $1 on appliances, switches and controls.
In my house there are talking radios, microwave ovens, weighing scales, tablets, phones and computers, also $1 for when filling cups, light switches and electric sockets that contrast with the colour of the walls, and any appliances that aren't specifically adapted are selected on how much tactile feedback do the controls give.
wateeeva [OP]5 points1y ago
I had never heard of bump-dots, thanks a ton :)
vwlsmssng4 points1y ago
They go around the washing machine settings dial to label the 3 most common programmes, on the microwave's most commonly used buttons (it talks when you press the buttons but first you have to find them then you don't want to press "cancel" when you meant "start".) They also go on the cooker-oven temperature and settings dials for the most used setting (fan oven) and temperature (180°C).
Before we had contrasting light switches they went on the wall plate to help locate the bit your press.
wateeeva [OP]3 points1y ago
This is going to be a huge help :)
makermurph7 points1y ago
Hello, I'm also new here. I'm 35 and I have Retinitis Pigmentosa. I'm completely nightblind and have a 10deg visual field. My wife and I celebrated 12 years in October. She has probably done more research about RP than I have. She married me knowing what I was trying to deny in my 20s. I think the most difficult aspect of specifically degenerative eye diseases is that each day is essentially the best you'll ever see again. (wow that was depressing to even type) The toll that thought, conscious or otherwise, takes on a person can be extremely hard to deal with. I second all of the suggestions for routines, hacks, and adaptive equipment that are in place and will be forthcoming. I'd like to suggest some things to help you and help your relationship though:
Laugh when it's funny and cry when it's sad. *Sometimes it just is and holding it back won't help.*
Stand up for yourself. *It sounds kinda shitty I know but I also know that when I'm in a crappy bummed-out-blind-guy mood everything comes back to my vision loss and I can be a real buzzkill. Don't be afraid to point out that you chose him and went down that aisle willingly so this isn't a hostage situation. You are together because you both want to be, not because you felt sorry for him.*
Keep talking. *Anytime we argue it's because one or both of us started assuming instead of asking.*
Advocate for him, don't speak for him. *As I have started carrying a cane, people in public will regularly just ignore me. When people (receptionists, servers, salespeople, etc.) ask her questions about me or ask her to answer on my behalf when I am right there, my wife just says, "Ask him, he's right there."*
Respect the things he can still do. *We (blind people) understand that there are limitations to what we can do (despite all those GD posters) and that can make us pretty feisty about surrendering the things we can still do. Retaining some sense of autonomy is crucial to my mental health.*
That's all I have for right now even though this is such a huge topic. I also want to echo those thanking you for seeing us for the people we are. Most of us aren't that hard to deal with ;) and it gives me hope to know that my wife isn't the only kind and decent person out there because I know I'm certainly not the only person out there living with a disability.
wateeeva [OP]1 points1y ago
Wow, this is some amazing advice. Thanks so much :)
Remy_C7 points1y ago
Been married to to someone sighted now for 13 years; I myself have an odd condition where it's hard to accurately explain what I see, but suffice it to say I use my vision for a lot, but my vision is far less than average; maybe 20% of the usual. My wife is very understanding, but there are times when it weighs on her. For instance, I don't always know when something is messy. I try to be as clean as I can be, but unless I can feel it, I'm probably not going to notice it. She tends to do most of the grocery shopping — most of all the shopping in fact. It's not that I CAN'T, but for me it requires either going to a store and asking for help — which these days can be more difficult with Covid — or going up and down each aisle trying to find stuff. It just takes way, WAY longer.
ALL that said, I am the primary source of income, being on disability but also having a full time job. I help out when and where I can; straightening up, cooking, cleaning as bestI can etc. You haven't really asked a specific question, but really what it boils down to is — surprise surprise — communication, and a willingness for each of you to work towards the fullfillment of your marriage and its responsibilities in your own way. As long as he's doing his best to love you, and contribute, hopefully there will never be any resentment. If his vision is degenerative, that will likely mean big changes for both of you. But being even completely or mostly blind these days is a lot more doable with the advent of technology than it used to be. So when that time happens, know that both of you will find support and resources in places like this.
wateeeva [OP]1 points1y ago
Thank you, reading all this gives me a lot of clarity on what to expect :)
bondolo6 points1y ago
I've been in a 30+ year relationship with a blind woman. Most of what follows is from a post I made about 10 years ago.
> There are definitely some differences living with a blind person but they are minimal enough that you'll get used to them. "Put things away in exactly the same place every time" and "don't move shit" becomes entirely second nature. You'll find your own memory for the location of things becomes better. I frequently get phone calls like "the jar on the second shelf of the fridge to the right with metal lid. What is that?" Some things like grocery shopping will seem like more work to you than to her. Prepare to walk 3 times as far as she does in any store. A blind person in a grocery store has not much to do besides stand behind the cart. You'll get tired of doing all the driving. You'll be doing the driving for your needs, both your needs and their needs. They'll be pissed that you aren't reliant on public transit. Paratransit sucks balls in every city in every country in the world. Plan to do all the laundry or plan to pay someone to do it. Your taste in clothes will become their taste in clothes. Even the most fashion conscious blind person is more concerned with looking presentable without mustard on their shirt than avoiding accidentally wearing a brown shirt and green socks with a blue suit. You should probably learn to cook. Most blind people do at least some of their own cooking but some things are borderline dangerous (deep frying chicken for example). You can divide up the work. My wife makes amazing bread, does much of the baking and roasting and makes excellent sauces. I make most of the vegetables (peeling and chopping) and do almost all the frying and sauteing.
> Have you read an audio book with them? My wife and I have been reading audio books together for years. We both read other books independently but usually have a fantasy or sci fi book that we read together. It's how I've read Game of Thrones, Harry Potter and the Harry Dresden books and quite enjoyed all in that format.
> For activities try to avoid really loud places. Most blind people use their hearing, at least in part for balance, and really loud places (clubs, bars, live music venues) can be very disorienting. Have you seen any movies? Are you learning to describe movies and TV for her? It really helps if you can pause the content to describe what's going on if you're not familiar with the movie or with describing. Audio described movies may be available at some theatres (sadly not as many good ones this year). About 15-20% of movies are described. All of the Disney/Pixar movies since Wall-E contain an audio description track as does Avatar.
> This is true for any disability not just blindness--don't coddle them. If they say they needs help with something offer it generously, but never take away the option of letting them do it themself or assume that some task is impossible.
> I'll make one other point that I believe also applies to all disabilities. You as the "temporarily able bodied" partner cannot ever be negative about the disability. Your partner can be angry, resentful and frustrated at their disability but you cannot. Transference of anger, resentment or frustration from the disability to the person is just too easy and natural. There is also a very high likelihood that it will be interpreted as against the person not the disability even if you did not intend it. You can have empathy, compassion and care. You need to have the "Serenity Prayer" or Daoist mindset of "Accept what cannot be changed, courage to do what must be done, and wisdom to know the difference". If you can't do that then you should not be in a relationship with a disabled person.
> Your life might be significantly different than it would have been without being in a relationship with a non-blind person. Do the likely differences matter to you? Accepting was easy for me based on our shared life goals and, probably at least in part, because I was naive but I have never regretted my choice to share my life with a blind person. If there is something you already know can't live without, it isn't going to magically get better later. This applies to kids, career, education, finances, etc.
bradley223 points1y ago
to me it sounds like you're saying that because we do thing x, all blind people will do thing x and that isn't true.
As for busses/trains and all that i'm sorry but no, in every other country apart from america the public transport is great; it's just bad in america from what I've heard.
Why can't the blind person do the laundry? By that I mean put the clothes in the washing machine/tumble drier? Sure we can't match colours but that doesn't matter if it just needs to all go in the machine.
HealthyChoice13631 points1y ago
Use NFC tags, for actually matching the colours, you can even soak them in to clothings
bradley222 points1y ago
I didn’t think of that :)
wateeeva [OP]1 points1y ago
Thank you sir, I'm going to try my best to make life easy for both of us. The last paragraph hit the spot :)
retrolental_morose0 points1y ago
Good lord. as half of a blind-blind couple, this sounds like hard work.
bondolo3 points1y ago
I am sorry if it sounded like I was complaining or advertising for martyrdom. That was not my intent. My life is different than it would be with a sighted spouse but atypical experience should not be interpreted as being worse. And the differences don't matter to me.
retrolental_morose4 points1y ago
I was just quite shocked at the imbalances, I suppose. if niether of us chopped vegetables, did the grocery shopping, organised clothes etc, they wouldn't get done. Because neither of us have any sight, neither of us have any advantage over the other. Pausing movies to add description, tiptoeing around discussing negative aspects of disability or even being temporarily more able-bodied is something I guess I've never even given any thought.
r_12351 points1y ago
I sometimes do wonder about that. What if I have a completely blind spouse as well whenever in future I get in to a relationship? What if the dream girl is with some other disability? Life is not that predictable. If I believe in differently abled people, I should be open to whatever that comes.
That's why, I am trying to learn whatever house chores I can, do whatever tasks I can. For getting groceries, I am sorted, there are many rising online dilivery services. For washing clothes, there's that machine, for cleaning house, well, I am still learning that, but I think i'll get very good at it with practice. Cleaning washrooms though, I think I'll hire some person online for that. It also helps that I am good with tech, so can work out solutions to many problems with the help of technology.
For cooking, that has been a huge challenge for me. I am extreemly scared of hot things and even fires. I might be able to do chopping and things like that, but, unlesss it's an accessible oven, I am not heating or frying things for now.
Let me know if you guys know any accessible machine that cooks food for us, That might save my life!
Edit: I am good with mobility and public transport, although, helping a person with Wheelchair might be tough for me, what with my cane and all.
WorldlyLingonberry403 points1y ago
Consider what your expectations are. In a home, chores have to be done. I've witnessed cases where the person got tired of taking care of their blind partner and I've witnessed cases where both the blind and sighted partners take care of chores.
Tarnagona3 points1y ago
My main piece of advice is to talk to him and listen to what he needs. For example, a couple people have mentioned bright lights. But my eyes are super light sensitive, so it’s the opposite for me. I want a house with dimmer switches in every room. (One of the reasons I love my fiancé’s family, as they’ve been making renovations, they’ve put dimmer switches in a bunch of new places, including the bedroom where we stay when we visit) And as his vision changes, what he needs will probably also change, so don’t just have one conversation about his sight, but keep talking about it.
Things like bump dots are great, but honestly, I just stuck blobs of sticky tac to the knobs on my stove. You can also use blobs of puff paint, or Braille labels (but I feel like those came off after a while). There are a bunch of other adaptive products out there, but I personally find most of them unnecessary.
Remembering to close cupboard doors is another big one. Unfortunately, despite how much I chastise him, my fiancé has STILL not been able to break this habit, and a don’t know how many times I’ve come within a hairs breadth of banging my head on them.
A smartphone is great, and has a bunch of useful apps for blind folks. But the apps don’t do everything, and sometimes it’s just faster and easier to ask a sighted person. So don’t be surprised if he borrows your eyes sometimes for reading small print, or finding out colours.
One thing that I’ve found, my fiancé, who is sighted, and myself, mostly blind, are still partners. He doesn’t take care of me. He helps me out, with the things, like driving, that he can do with sight. But I help him just as much (I joke that I’m his external memory bank because I’m the one who remembers things). I don’t think I could be happy with someone who insisted on coddling me, instead of helping my live my own independent life. My advice is to work with your person instead of feeling like you have to do everything, or always take care of them.
Which brings it right back around to my first point. Talk to him, and find out what he needs, and what he says is helpful and do that. Everything else is things that may or may not apply to their specific situation.
wateeeva [OP]2 points1y ago
Thanks a bunch.'He doesn't take care of me, he helps me out' I'mma make a sticker out of that.
Tarnagona1 points1y ago
Yeah. I think it’s really easy for sighted folks, who can’t imagine what being blind is like, to assume they have to do everything for us. My friends are better at this because they know me, and strangers are the worst sometimes. But I think it will help to start with the mindset that you are his partner, not his caregiver, that your goal is not to take care of him, but to figure out how to make that partnership work.
NoClops2 points1y ago
I think the biggest one for me is don’t define your partner by his visual impairment. In other words, like others have said, let him tell you what/if he needs. My blindness is stable/permanent, so husband and I don’t have to worry about that specifically changing. We both can forget I’m blind most of the time. If your partner is comfortable in their vision, it becomes background/second nature. My blindness was a progression, and I usually didn’t explicitly notice when it would change. So, don’t make a big deal out of it until/if he does. (You’re one comment on my husband’s post has led me down a rabiit hole. Hahaha Thanks, because I was so bored today.)
No-Satisfaction78422 points1y ago
As long as you are comfortable with doing 100% of the driving LOL. I know sometimes that can wear my wife down a little bit but she understands
wateeeva [OP]3 points1y ago
Now that I know what to expect, I will mentally prep myself for it, lol. Thanks :)
ratadeacero2 points1y ago
My wife has progressive cone dystrophy. It's the same as a regular marriage, except you have to do the driving and you may want to skip movies on date night because they might become bored if they can't see that well. . Other than that, it's all the same.
vadwar1 points1y ago
If you live in the U.S., movie theaters are required to provide audio description tracks for blind people. They will receive headphones with a receiver that will give them access to the description as they watch the movie. Not having this is a violation of the Americans with Disabilities Act.
ratadeacero1 points1y ago
We do. Never asked for it. Movies aren't an enjoyable activity for her. I don't mind going with a buddy or by myself. Stuff we do for fun includes hiking, camping, fishing, and checking out music.
vadwar1 points1y ago
Those all sound like fun activities.
TechnicalPragmatist1 points1y ago
Some people are more independent and want to be much more, some much less. And each person is still an individual after they go blind.
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