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My sister has lost her sight. How can I best help her? (self.Blind)
submitted by everynameistaken000
It happened suddenly. At christmas she could see . She had an operation almost a month ago on her optic nerves - something about pressure.
After the op her vision was blurry and restricted but she still had some.
Within 2 weeks of the op she lost her remaining sight.
The dr says the operation was a success. They say they cannot explain why she has lost all her vision.
She has dark and she has glare and that is it.
She is having constant panic attacks and can't be left alone.
I am hoping for advice here . Tips. How can I help her to cope?
I have involved local organisations and organised ot to come re aids .
She refuses medication to help her emotionally.
I would be so grateful for any input. I want to get her the best help.
Thank you.
After the op her vision was blurry and restricted but she still had some.
Within 2 weeks of the op she lost her remaining sight.
The dr says the operation was a success. They say they cannot explain why she has lost all her vision.
She has dark and she has glare and that is it.
She is having constant panic attacks and can't be left alone.
I am hoping for advice here . Tips. How can I help her to cope?
I have involved local organisations and organised ot to come re aids .
She refuses medication to help her emotionally.
I would be so grateful for any input. I want to get her the best help.
Thank you.
everynameistaken000 [OP] 5 points 5y ago
Thank you for the replies.
We are in england. She is 42.
We do all try to help her breathe through but at the moment she is refusing so much outside help. Doesnt see the point of pills or counselling because in her words nothing will change what has happened.
I think she is in shock if that makes sense.
She wont leave her bedroom except to go to the bathroom. She is so scared and i don't know what to say that isnt trite or patronising or just plain unhelpful.
I realise it is a stupid 'how long is a piece of string' question and i hope it isnt offensive but how long does it take a person to begin to adjust to having lost their sight and is there anything at all those who love them can do or say to help them cope?
We are in england. She is 42.
We do all try to help her breathe through but at the moment she is refusing so much outside help. Doesnt see the point of pills or counselling because in her words nothing will change what has happened.
I think she is in shock if that makes sense.
She wont leave her bedroom except to go to the bathroom. She is so scared and i don't know what to say that isnt trite or patronising or just plain unhelpful.
I realise it is a stupid 'how long is a piece of string' question and i hope it isnt offensive but how long does it take a person to begin to adjust to having lost their sight and is there anything at all those who love them can do or say to help them cope?
nwbld 8 points 5y ago
You might try contacting the RNIB for some assistance. That's their speciality! https://www.rnib.org.uk
They even have a help line: 0303 123 9999
I'm not an expert on any of this, but I would imagine that the shock is normal. Her life has changed significantly and in one of the most dramatic ways possible. She's going to need experiences that build confidence before she can start to adapt. Hopefully RNIB can help her and your family through this.
They even have a help line: 0303 123 9999
I'm not an expert on any of this, but I would imagine that the shock is normal. Her life has changed significantly and in one of the most dramatic ways possible. She's going to need experiences that build confidence before she can start to adapt. Hopefully RNIB can help her and your family through this.
saizai 3 points 5y ago
How long to adjust: that's _very_ variable. Your sister will probably take longer than average; she's older, and lost her sight more or less suddenly. Not as easy as when you're younger or when you have time to gradually adapt.
Frankly, speaking from personal experience, it really fucking sucks to lose your sight. Don't shy away from it or from empathizing with her being in a really difficult place.
Don't neglect the doctors etc, and follow up with whatever diagnosis and treatment might be possible for her situation.
I'd say there are probably two different aspects of "how long".
1. Psychologically, how long will it take to come to terms with her "new normal"? I think you're probably better placed to tell that than any of us.
2. Pragmatically, how long would it take to learn basic coping skills? If she starts O&M etc now, and picks it up quickly, probably a month or so for the bare minimum - and at least a couple years before it's at the level where she's starting to be "fluent".
But that's only if she's in the psychological place where she can do the work required to learn these new skills. It's not as impossible as it might seem, but it's also not easy, and most of the hard parts are things that you probably do not currently understand. E.g. for me, hard things: the amount of memory, concentration, & mental mapping required to have object permanence for navigation; ingraining echolocation to be able to _feel_ my environment rather than explicitly listen for echo durations, noticing when I'm deviating from straight line walking, etc.
In short: it's completely understandable that she's scared. It's really fucking scary. That's true. Her life is going to have to change.
But she _can_ learn the skills she'll need to get through it, and operate in the world successfully. It's an obstacle to overcome, not a death sentence.
Frankly, speaking from personal experience, it really fucking sucks to lose your sight. Don't shy away from it or from empathizing with her being in a really difficult place.
Don't neglect the doctors etc, and follow up with whatever diagnosis and treatment might be possible for her situation.
I'd say there are probably two different aspects of "how long".
1. Psychologically, how long will it take to come to terms with her "new normal"? I think you're probably better placed to tell that than any of us.
2. Pragmatically, how long would it take to learn basic coping skills? If she starts O&M etc now, and picks it up quickly, probably a month or so for the bare minimum - and at least a couple years before it's at the level where she's starting to be "fluent".
But that's only if she's in the psychological place where she can do the work required to learn these new skills. It's not as impossible as it might seem, but it's also not easy, and most of the hard parts are things that you probably do not currently understand. E.g. for me, hard things: the amount of memory, concentration, & mental mapping required to have object permanence for navigation; ingraining echolocation to be able to _feel_ my environment rather than explicitly listen for echo durations, noticing when I'm deviating from straight line walking, etc.
In short: it's completely understandable that she's scared. It's really fucking scary. That's true. Her life is going to have to change.
But she _can_ learn the skills she'll need to get through it, and operate in the world successfully. It's an obstacle to overcome, not a death sentence.
saizai 3 points 5y ago
BTW, this isn't the same as clinical depression. She's _grieving_, which is completely natural given the situation.
Counseling might help, but this situation is not what antidepressant medications are for. If she has preexisting depression, or her psychologist recommends otherwise, that's another matter - but I think that you pushing her to get meds for her grief is not a good idea, and implicitly devalues the legitimacy of her loss.
Good things you could help her get: counseling / therapy; rehabilitation / O&M training; follow-up medical diagnosis / treatment; contact with friends / enjoyable activities; skills / tools to cope with being blind.
Counseling might help, but this situation is not what antidepressant medications are for. If she has preexisting depression, or her psychologist recommends otherwise, that's another matter - but I think that you pushing her to get meds for her grief is not a good idea, and implicitly devalues the legitimacy of her loss.
Good things you could help her get: counseling / therapy; rehabilitation / O&M training; follow-up medical diagnosis / treatment; contact with friends / enjoyable activities; skills / tools to cope with being blind.
AllHarlowsEve 4 points 5y ago
Has she had a lumbar puncture? If her optic nerves atrophied from pressure, she could have Idiopathic Intracranial Hypertension. That's actually how I became blind. It can also cause mood swings and anxiety.
If it is IIH, also known as pseudotumor cerebri, then there's a chance it may be reversable, in some amount.
I agree with the idea of helping her learn to use her phone /or her computer, tablet, whatever device again.
Any device that's somewhat modern should have a screen reader. All apple devices, and almost all android devices, have screen readers. Windows 10 devices have narrator, or you could install others like NVDA.
One of the most important things for you to know is that we, as humans, grieve our losses. When we lose the life we had, whether because of losing a job that's important to us, or becoming disabled, gaining weight, aging, we lose parts of ourselves. She will go through the stages of grief. She may go through all of them, skip some, jump around, accept it and revert back, and all of that is normal.
If you can, try and convince her to at least talk to someone at the RNIB. They may be able to suggest a therapist for her with experience with vision loss themselves, or someone who's been helpful with this kind of stuff in other people.
If it is IIH, also known as pseudotumor cerebri, then there's a chance it may be reversable, in some amount.
I agree with the idea of helping her learn to use her phone /or her computer, tablet, whatever device again.
Any device that's somewhat modern should have a screen reader. All apple devices, and almost all android devices, have screen readers. Windows 10 devices have narrator, or you could install others like NVDA.
One of the most important things for you to know is that we, as humans, grieve our losses. When we lose the life we had, whether because of losing a job that's important to us, or becoming disabled, gaining weight, aging, we lose parts of ourselves. She will go through the stages of grief. She may go through all of them, skip some, jump around, accept it and revert back, and all of that is normal.
If you can, try and convince her to at least talk to someone at the RNIB. They may be able to suggest a therapist for her with experience with vision loss themselves, or someone who's been helpful with this kind of stuff in other people.
everynameistaken000 [OP] 3 points 5y ago
Thank you. Yes she has. That is what they said it was. The surgery she had on her optic nerves was supposed to relieve it and stop it from getting worse.
But what they didnt see until after the surgery was other damage to her eyes. She also got diagnosed with sleep apnoea and she had a huge amount of carbon dioxide in her blood and spent a while on oxygen in the hospital. She has got a machine now but has panic attacks while trying to use it. Apparently sleep apnoea can cause damage to the eyes.
We were all told that the operation would mean that she wouldnt lose further sight. It was a huge shock that a fortnight later she was blind.
Grieving process makes a lot of sense. That absolutely is what is happening. I will suggest again that she could talk to someone. I got the eclo at the hospital to go to her last appt with her and my sister came out very upset because she said it made it seem real. They did do the paperwork to register her severely visually impaired which was good.
I suppose it is early days. We have to help her make this huge adjustment.
But what they didnt see until after the surgery was other damage to her eyes. She also got diagnosed with sleep apnoea and she had a huge amount of carbon dioxide in her blood and spent a while on oxygen in the hospital. She has got a machine now but has panic attacks while trying to use it. Apparently sleep apnoea can cause damage to the eyes.
We were all told that the operation would mean that she wouldnt lose further sight. It was a huge shock that a fortnight later she was blind.
Grieving process makes a lot of sense. That absolutely is what is happening. I will suggest again that she could talk to someone. I got the eclo at the hospital to go to her last appt with her and my sister came out very upset because she said it made it seem real. They did do the paperwork to register her severely visually impaired which was good.
I suppose it is early days. We have to help her make this huge adjustment.
finn141414 4 points 5y ago
I am so sorry she’s going through this. If you are still in the diagnostic realm, I recently joined an optic neuritis support group on Facebook “optic neuritis real support” (I joined to find help for someone else with sudden vision loss). It also might be a good support group otherwise, but they might have more advice in the way of what to do next medically (what to ask doctors, nutrition support, things like that).
My best wishes to your sister, you sound like a very good sister to her.
My best wishes to your sister, you sound like a very good sister to her.
saizai 3 points 5y ago
In addition to the rest: contact your local council to ask them about their services for blind people. The council, not RNIB, are the ones that do O&M, rehab training, etc. They might not even require certification of legal blindness to get started. Even if their website doesn't say they have this, call them up and ask.
My council's website didn't say anything like this, and everything I could tell implied I needed a certificate before I could get O&M. RNIB couldn't give me any better info.
When I eventually did get certified, I was eventually referred to the council, their rehab people came over for initial assessment, and I found out that actually they'd have been perfectly happy to help me all along, without all that paperwork, since I obviously would benefit from the rehab training and that's pretty much their only requirement. They're also very kind, supportive people, and the ones who are actually helping people in person.
So - talk to your local council, find the people who actually do the O&M training, house calls, rehabilitation, etc, and get them to come over and have a talk with your sister.
My council's website didn't say anything like this, and everything I could tell implied I needed a certificate before I could get O&M. RNIB couldn't give me any better info.
When I eventually did get certified, I was eventually referred to the council, their rehab people came over for initial assessment, and I found out that actually they'd have been perfectly happy to help me all along, without all that paperwork, since I obviously would benefit from the rehab training and that's pretty much their only requirement. They're also very kind, supportive people, and the ones who are actually helping people in person.
So - talk to your local council, find the people who actually do the O&M training, house calls, rehabilitation, etc, and get them to come over and have a talk with your sister.
brass444 3 points 5y ago
My SO (50 and otherwise healthy) lost their vision suddenly three years ago. My heart aches for you both.
He has returned to work after going through mobility and accessibilty training in the US. None of it has been easy. He travels all over the country and even played golf for a while. The UK has lots of adaptive sports groups if that is her thing.
A well-regarded psychiatrist described it to us as an “ambiguous loss”. He told me (as I listened one day through tears) to tell him that I knew what he was going through was hard and that I would be there for him and we would get the best people to help us through. It is a loss and she needs space to mourn that loss.
I had to trick him (shhhhh ;) into going to the Dept of Vision bc the thought of identifying as blind was too hard for him.
She may just not be ready. My recommendation (to add to others here) is to acknowledge her pain, ask her how you can help,
Watch a movie or TV show with her (Netflix and Amazon) have video description on all original content. Most movies now have video description.
Get audible or maybe your library has audio books for her (in US the dept of vision impaired has them for free)
My husband just had Aira glasses approved as an accommodation for work. He would be glad to talk to her. He is no Polly Anna but has been right where she is now.
Maybe Invite close friends over for a quick lunch) no pity parties. People who treat her like her life has ended or talk loud to her need to be kept at a distance.
She probably also needs to feel needed. We had to work through our own misconceptions about being vision impaired. Are you on Twitter?
Depending on her previous job and activities there is lots she can do ... when she is ready. It *is* a body blow. No app will make her feel like she has her vision back but check out SeeingAI (free from Microsoft).
Sending support from across the Atlantic!
He has returned to work after going through mobility and accessibilty training in the US. None of it has been easy. He travels all over the country and even played golf for a while. The UK has lots of adaptive sports groups if that is her thing.
A well-regarded psychiatrist described it to us as an “ambiguous loss”. He told me (as I listened one day through tears) to tell him that I knew what he was going through was hard and that I would be there for him and we would get the best people to help us through. It is a loss and she needs space to mourn that loss.
I had to trick him (shhhhh ;) into going to the Dept of Vision bc the thought of identifying as blind was too hard for him.
She may just not be ready. My recommendation (to add to others here) is to acknowledge her pain, ask her how you can help,
Watch a movie or TV show with her (Netflix and Amazon) have video description on all original content. Most movies now have video description.
Get audible or maybe your library has audio books for her (in US the dept of vision impaired has them for free)
My husband just had Aira glasses approved as an accommodation for work. He would be glad to talk to her. He is no Polly Anna but has been right where she is now.
Maybe Invite close friends over for a quick lunch) no pity parties. People who treat her like her life has ended or talk loud to her need to be kept at a distance.
She probably also needs to feel needed. We had to work through our own misconceptions about being vision impaired. Are you on Twitter?
Depending on her previous job and activities there is lots she can do ... when she is ready. It *is* a body blow. No app will make her feel like she has her vision back but check out SeeingAI (free from Microsoft).
Sending support from across the Atlantic!
bradley22 3 points 5y ago
Applevis is for apple related things like the IPhone mac and apple watch. the site is www.applevis.com and a good page to get started on would be https://applevis.com/new-to-ios
There's audiogames.net for games bassed on audio. The site is www.audiogames.net most of these games are for windows.
If you're interested in using windows and a screen reader, I'd highly recommend NVDA. You can find out more here: www.nvaccess.org and if you want to know what a screen reader is, go to this wikipedia article https://en.wikipedia.org/wiki/Screen_reader
That's all I can think of for now, I hope these posts helped you and if you have anymore questions, I'll do my best to answer them.
There's audiogames.net for games bassed on audio. The site is www.audiogames.net most of these games are for windows.
If you're interested in using windows and a screen reader, I'd highly recommend NVDA. You can find out more here: www.nvaccess.org and if you want to know what a screen reader is, go to this wikipedia article https://en.wikipedia.org/wiki/Screen_reader
That's all I can think of for now, I hope these posts helped you and if you have anymore questions, I'll do my best to answer them.
bradley22 3 points 5y ago
I'm not sure where you're from but i'd recommend getting her mobility training. There are things like the Amazon Echo, and Google home for voice activated hardware. There is also the Iphone with voiceover. Voiceover is a screen reader, what that means is once voiceover is turned on your sister will be able to use the Iphone. I'm sorry to say that if she is into video games there's not many out there for us as blind people. The latest Xbox has a screen reader built in to assist those who are blind but i'm not sure how good it is as I don't use it. I hear it's really good but at the moment there's not a way for game menus to talk to us. I'll post some links to some sites you may want to look at in the next post I make on this thread. I hope I can help.
brass444 2 points 5y ago
Yes. We have an Echo and play Jeopardy every evening. :)
estj136 2 points 5y ago
I think the first step is to understand and encourage. To Empathize. To tell her slowly continuous, that it’s okay, someone is there to believe in her, someone that will be there not as a nurturer or care taker, but as a friend. As someone support but believe in her. Remind her how capable she was or could be. Blind people could do much of anything. I did journalism work for a bit, and was basically able to complete it, even the independent travel. Blind do and has done much so, respect her and be her greatest allie. What did she do before she went blind? Tell her there is probably a good chance she can continue probably, or find something just as rewarding and productive. Just because she lost her sight means nothing. She can be just like she was. No one needs to believe she’s blind.
everynameistaken000 [OP] 2 points 5y ago
I cannot thank you all enough for your replies. You have all been so kind and helpful. Thank you.
everynameistaken000 [OP] 2 points 5y ago
Thank you again. I really appreciate your suggestions. They are a huge help.
_WeAreTheLuckyOnes_ 2 points 5y ago
THis is no way immediate help but I read an excellent book about someone who transitioned from sight to blind due to a traumatic event. It's called Beyond the Bear: How I Learned To Live And Love Again After Being Blinded By A Bear
https://www.amazon.com/Beyond-Bear-Learned-Again-Blinded/dp/0762784555
https://www.huffingtonpost.com/dan-bigley/blinded-by-a-bear-how-my-_b_3202338.html
I found this book to be so inspiring and honest. I still think about it when I'm having a tough day and think "man, if Dan can come through like that I shouldn't be complaining too much." It's a those books that inspired me to write a letter to the publisher to pass on. I had never done that but I wanted to thank him for sharing his story.
I am sighted btw.
https://www.amazon.com/Beyond-Bear-Learned-Again-Blinded/dp/0762784555
https://www.huffingtonpost.com/dan-bigley/blinded-by-a-bear-how-my-_b_3202338.html
I found this book to be so inspiring and honest. I still think about it when I'm having a tough day and think "man, if Dan can come through like that I shouldn't be complaining too much." It's a those books that inspired me to write a letter to the publisher to pass on. I had never done that but I wanted to thank him for sharing his story.
I am sighted btw.
bradley22 2 points 5y ago
Have you thought about meditation for the panic attacks? Or asking her to try to breathe slowly. How old is she? This might be able to help us help her a little more.
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