You are the closest relation or partner of someone who is losing vision, or has a diagnosis of a blinding disease. The shock and grief for you can be almost as great as for your loved one. You aren’t getting any of the special attention or professional care either. You’re just holding her (or his) coat and looking at a long future of burden and responsibility.
At this first stage of diagnosis and maybe surgeries, your life can be thrown into shambles by constant driving to appointments and filling out the insurance paperwork, which she (or he) can’t now do herself. All the meal preparation, the bill-paying and the laundry now fall on you. Often you do everything for your partner, sibling or parent who seems to have such a tragic future.
You pour out time and effort without counting the cost. This time can be a beautiful example of family generosity and love, and you can find yourself elevated to greater sensitivity and intuitive understanding than before. But there is a high cost in stress and private grief which you have to keep hidden from your loved one. You can’t share your dread of how life will be with someone who has a major disability.
On the other hand, if the relationship is new, or had problems before, you may know that you aren’t the partner for someone who can’t see much. If so, it may be better to say so sooner rather than later.
After this first emergency stage, you are looking at something different. If it’s your parent who is losing vision, don’t rush to move him or her. We all do better in familiar surroundings and this is twice as true with vision loss. If you can get your parent some more support in a way that leaves him or her in control, that is usually the better solution. Many seniors with vision loss live safely at home. Don’t let your fears decide his or her future!
This is also true if it is your other half who is losing her eyesight. Don’t let your fears, or your desire to have everything stay the same control the situation. Remind your partner and yourself that she is still the same person. Be as flexible and encouraging as you possibly can. If you encourage her (or him) to get a ton of training – using hearing, touch and remaining sight – in time your household will find a new balance of responsibilities. The tasks will be distributed differently, but life can go on.
Now the situation isn’t primarily medical. Instead there is someone you love who is struggling to begin a giant shift in how she uses her senses. She will depend a lot on you at first before finding new ways of doing things.
What may be more difficult for you is becoming accustomed to not having a companion for many ordinary pleasures. TV, movies, photos, the comics, a cute kid on a tricycle, and so on. It’s really rough! You and your partner, best friend, or sibling now may have not only different ways of experiencing life but also mostly different pleasures.
This is a very big issue indeed and includes everything from how the kitchen is organized to choosing a vacation.
Just about everything gets thrown into the blender. It’s so uncomfortable, so difficult! But if you can stick it out together, a deeper trust and understanding may develop. Your ability to communicate and understand other people will also be enhanced by your acquaintance with grief. You will grow more compassionate and more loving, and in doing so may find a richer experience yourself.
When You Can’t Believe Your Eyes: Vision Loss and Personal Recovery, Available in 4 formats as well as free copies.
Here are 2 new posts for partners:
6 Years On… The Grief and Courage of Partners
The Team Approach to Sight Loss in Your Partner
Thank you so much for sharing. I am experiencing a very difficult time with my partner who has become blind in one eye and now the possibility of losing his sight in the other. We’ve had some counselling for preparation of possible unsuccessful surgery and beyond. It did help us though the depression of what’s ahead is overwhelming.
Weve bought a new home and are meant to shift in soon., bad timing!!
Im finding it very difficult. My man is doing his best to keep positive as I am, especially in front of him. I can’t express frustration, tiredness (I’m exhausted), how can I, compared with what he is going through.I’ve completely lost freedom as I feel I can’t leave him alone. I’m scared for him for me for us.
Hello Grace, I am so sorry that you are both going through this very traumatic time. I don’t agree that it is worse for your husband. In the long term of course he is the one who has to live with this life-changing event, but just at this point I think you may be suffering at least as much.
Please find ways to get support and help for yourself. Is there someone you can talk to at leat every week? Someone you trust – it could be a member of the clergy , or a therapist, or your sister – whoever you choose has to be a very good listener and not think they have any quick answers.
You also need some breaks! I don’t see why you can’t leave your husband comfortable in a room he knows well with the radio or TV and a refrigerator nearby, while you either go out somewhere for a break and a diversion, or get some much-needed rest – a long nap. You should also try to go out with a friend for the evening once a week. Leave your husband well-cared for perhaps with a neighbor who knows and will drop in during the evening for a chat.
In my marriage, I was the one who lost sight and I know that I thought that my husband’s situation with all his hidden grieving and looking after me and being brave was more difficult – I was the one getting all the sympathy and the attention!
If you would like to continue corresponding , please email me : Hannah@VLPRBlog.com
All good wishes to you both, Hannah PS It will very slowly get easier. H.
Hello I am 26 and my boyfriend is 28 and he is blind in one eye and the other eye is going blind. I want to stay with him but it is so hard and scary thinking about our future now. For the majority of our 4 years together he has been able to see, now due to his diabetes he is quickly losing his vision. Can I email you to ask you some questions?
Hello Tangela, Thank you for reaching out to ask this very important question. It shows your good sense. Rather than talking to me and perhaps getting an impression that is bound to be superficial I recommend that you read my book “When You Can’t Believe Your Eyes: Vision Loss and Personal Recovery” – there are links to it on the book page of my blog.It contains all my best ideas and will give you an overall picture of what you will be going into together. There are many successful blind-sighted marriages including my own, but it is a very serious decision and one you should not either of you rush into . All good wishes, Hannah
This is such a vivid description of how things are in the first year or so. There is so much awaiting your husband and you after this first period which is so painful, confusing and messy. Let me know if you don’t receive a contact email from me. Hannah
Hannah, your point of view really spoke to me. Thank you for offering a dialog. How do you communicate in writing now that you don’t have vision?
My husband has macular degeneration, rapidly progressing. Both of us are grieving and just beginning to talk about how we’ll manage. We need both emotional support and practical advice. Where to turn?
hello im Sandy, my husband lost his eyesight in 2014. It seems there are many many many emotions. For us both we also have 2 children, son 14 daughter 17 at the time he first began to notice his eyes began to get blurry . within 16 hrs he was raped of his on indpendance for the rest of his life. We are and have been fighting for 3 years for our home , bills, DR appoints for 3 dependants now 4 did i mention we care for his 83 yrs. old mother. Im so glad to share in a postive way. i truly need somene.
Hi Sandy..
I just saw your writing from years ago. It touched me. I just wanted to say, I pray that you and your family are well. Take care ?
Hello Sonya,
I apologize for the delay in approving your comment. I do hope that Sandy reads it and is encouraged by your words. You don’t talk about your own situation. I hope you and your loved ones are doing well. Please add to the many excellent comments on this page if your situation is tricky just now. Also read my book “When you Can’t Believe Your Eyes, details on this blog. Hannah
It was lovely to hear someone describe, what it is like to live with someone who vision loss. My husband Rob lost his sight over night in March, 2013. We are still struggling to come to terms with his sight loss. Fortunately he now friends he can talk to who have also lost sight over night. I do realise that it is much worse for my husband. However unfortunately for myself, although I have many friends and family for support, which I do appreciate. I don’t have anyone I can share my concerns regarding Roberts sight loss, who have been it through it themselves. Please can anyone in the same situation, contact myself Ruth, and may be we can help each other emotionally through a very difficult situation. Only positive advice and support would be very welcome.
Hi Ruth, thank you for this rarely-spoken comment. The experience of minute-by-minute loss never ends for your husband. On the other hand he gets the sympathy, special care and offers of training. You just soldier on, trying to deal with your feelings which must include all the same great loss and grief. I am so glad you have plenty of people to talk to, and you are wisely reaching out to search for a support group. I wonder if an email to BBC In Touch might get results? Here is the address: intouch@bbc.co.uk I also wonder if you might consider professional help as well – a good psycho-therapist would be someone you could confide in each week. It’s not easy to find someone really good – I suggest you interview 3 therapist before picking the one you feel most comfortable with.Thank you for reaching out, Hannah
My partner just had a tire explode in his face and lost his “good eye”. His other eye has very limited vision since childhood… the doctors have told him repeatedly he’s blind and he keeps saying “if they come tell me my eyesight is gone, I’m fucked”…. sigh
Hi Cheri, what a terrible shock for you both! Numbness and denial or disbelief are common and a way of protecting yourself for a while. It must be very hard to listen to, but it’s how he is bearing the loss. Later he can have a low vision assessment to find out whether the sight in his other eye has survived the explosion and how he can use the remaining vision. If he is still being treated for the effects of the explosion that will allow him some time to begin to grieve. It’s a long process, but depending where you live there should be vision rehab services available when he is ready. all good wishes and please contact me again if you would like to. Hannah
Hi Ruth,
My partner lost his sight before I met him. (Overnight from an accident 10 years ago) we have been together 5 years.
It’s hard for him, but it’s also hard for me at times. Like it is for you.
I support him, be there listen. Suggest counseling and talking to friends who have lost sight helps him.
Just today he had bad day due to 9 years ago he was going to buy bitcoin and would have a million dollars today if he had of done it 9 years ago. ( but couldn’t as he couldn’t access the site with vision impairment.)
He’s going to get some counseling at the moment to (Leo over this hurdle. The fact he took action to get this counseling was a big step for him.
As he’s very independent.
Hope that helps.
It’s hard that he doesn’t really know what I look like, and that we can’t watch a sunset together.
Cassie
Hi Cassie ,
I’m 22 years old & my boyfriend is also 22. Your comment stood out to me because the date you made your comment just so happens to be the exact same day and year I asked for a solid relationship with my boyfriend (Roland). Roland has been blind for about 2 years before we got together.
I think the strangest part about our relationship is that we were middle school love birds when we were just 12-13 years old. Though we both have grown on many different levels since then.
I can’t help but to be reminded of my old perception of him, & maybe a lot of that comes from Roland just being his old positive self that makes it so hard to forget. We find ways to make light out of our difficult situation. Sometimes we share jokes that only someone who’s lost their vision could understand or even possibly find humor in. Other times.. I feel this dark lonely feeling over me that makes me just want to shake him until his eyes work again. No one understands the way I feel. & honestly I can’t seem to explain it to anyone good enough. This site gave me a since of comfort in knowing that I am NOT alone with this..
Paige ❤️
Hi Paige,
I need someone to talk to regarding this matter. Do you mind sending me a message?
Hi Cassie , thanks for reaching out and I’m sorry to hear of your partners sight loss. It’s difficult to know what to say but I really do have empathy with you. Rob lost his sight in 2013, so as you can see it’s been nearly 10 years since his sight loss. In some ways life has become a little easier physically in that we’ve now had alterations to our home, to make life easier. Both of us have had counselling , but this has had limited benefit, for us . Physically we have had a number of alterations ie new toilet downstairs, bigger kitchen as he is a big man and kept bumping into cub boards in our old very small kitchen. Also a walk in Shower
to the property , The Local council wouldn’t help us by giving us a grant for the renovations , saying he didn’t have a server disablement !! So we had to waite until his mother passed away and her house was sold in 2018. We were very lucky that we’d saved and had money given to us in my mother in laws will. The change in life for me is not being able to share visual aspects of life with , ie shopping for the house , holidays and people staring at us when we’re out and about some folks are so rude. We have a guide dog now which in its self is a blessing, She’s called Yazmin , golden retriever and is a big part of our lives, along with our pet retrievers. I wish you every look in the world with your new life for you and your partner. Life does get better, however there are certain situations that will never change, and that you have to work round , and change your mind set. Then which for us is still work in progress. Good luck. Love Ruth Silvera x
My husband has lost most of his eye sight he can no longer drive and tells me he feels like a dependent which makes me feel terrible. What can I say to him to make him feel better?
Hi Laurie, Thanks for your comment. What your husband said is how almost everyone feels when they lose a lot of sight. At this point your best ways to help are by checking out all the services that your husband may (or may in future) be eligible for in your city or state. If your husband can start making the calls himself that will be the very best – with you supplying the numbers. There is a website called Vision Aware which has a free app that can be downloaded onto a smart device which will list all the organizations in your area. Once your husband can get started with whatever services are on offer, he will begin to feel just a little better. After that it is go on…go on….go on ! There is so much to learn and some of it is really cool.
Hannah,
Thank you so much for this advice and help. Going through a lot. My husband was diagnosed with conal dystrophy at age 16. He has always been light sensitive and his was visually impaired. The doctor said that one day he could lose a good deal of his vision. It’s happened and he is 39 and he has experienced a rapid loss of vision. He can’t drive anymore and has a very high powered executive job at one of the top 5 companies in the world. He’s got to make a change because it’s impacting his ability to be comfortable in meetings and is unable to participate fully with his loss of vision. First steps are to get the doctors to determine what the extent of the vision loss is and the impact to his daily living activities and then make a plan from there concerning the job. I’m exhausted driving him to all these meetings in addition to all the doctors appointments. I just hope to come up for air soon and get a plan worked out. I want to help him feel independent and not lose my sanity. Any recommendations for support groups for him or both of us? Any advice is greatly appreciated.
Dear Jennifer, I am so sorry that you are going through this. It is very tough indeed. But first I advise you and your husband to visit a disability employment attorney (the best you can find) so you get expert advice about the legal position before he makes a move at work . I don’t know whether your husband would want to take short term disability while he gets trained in Vision Rehab.
In general and if your husband has the strength of mind to hang on, it is best not to resign from a company where his work is known and valued. It is likely that he will move over to a part of the company where he can work well. It will perhaps be a bit less high-powered. It will take a couple of years to accept what has happened ( the most difficult thing), get a full training and also to grieve for the great loss of his good eyesight. (He wouldn’t have to leave work for that long.) There are many brilliant blind people an increasing number of whom have high level jobs. If he can go through all the sorrow and often a lot of anger and fear too, there is an interesting life with some excellent technology awaiting you both. Please email me if you would like further comments. In the meantime please reach out to your closest friend or family – you need some down time and loving support .
Hello,
So i googled this not knowing what I was going to read but this sight has been a blessing. My story is a little different but so much alike. My husband was “born” with macular degeneration and was advised that he would be blind by the age of 21. He is 28 now and hasnt lost all sight but definitely 80%. (YES I KNOW WE ARE YOUNG) Its tough because we are young (I’m only 26) and we have small children he gets real depressed. Is there any encouragement I can really give? His biggest fear is waking up one morning and not being able to see me or our children. I look at it like ITS OK YOU ARENT ALONE WE ARE STILL HERE WE STILL WILL LOVE YOU but he just gets more depressed and we either argue or he just shuts down and says I dont understand. I know I lack in empathy but I do really care and I let him know I’m here for him. IDK how to help him.
Hi Chloe, thank you for writing about this very difficult situation. First I am sure you are exhausted with your husband so grief-stricken and angry, and little children to care for. I hope you have a few close friends to talk to, and can get out of the house sometimes. I wonder if you have considered some counselling at least for yourself? If you have health insurance and can drive to an appointment once a week , it might be a relief to talk to a professional for an hour. If possible interview three counsellors or therapists and pick the one you are most comfortable with.
Have you or your husband been in touch with Blind Services in your state? States differ widely in what they offer, but someone in your husband’s position – young and with a young family – is likely to be offered a lot of training. He may not be able to bear to think about this, but maybe the hospital where he goes for ophthalmology appointments has links to a support group for people with recent vision loss, but he may not be ready for this either. I hope that his ophthalmologist is really good and preferably working at a hospital affilliated with a university, so you are both sure he is getting the very best treatment available.
I wonder whether you could suggest that he would take a first step towards blindness services for the sake of you and his children. If you go to the VisionAware website they have an app. called Vision Connect which will show you what services for people with vision loss are available near your home. This stage of anger and fear is almost universal. When the time comes that he can think about learning some of the amazing new technology he may begin to feel better. There’s no doubt that not being able to see your children’s faces is a great loss, but touch and speech are almost more important with little children and he can give them lots of cuddles, and tell stories and listen carefully to what they say. Children with a blind parent often have exceptional vocabulary and advanced speech. All good wishes, Hannah
Hi Chloe,
It’s so so hard isn’t it!! Two children to be cared for too! My Richard was suddenly a nightmare to live with and the added bonus of endless amounts of driving that I had to do. It’s a wonder my eye balls didn’t fall out of my head with the amount of constantly rolling them. I felt like I’d turned into an impatient horrid human and I just wanted to run and hide many times. But I didn’t and I embraced the positives no matter how small and before I knew it the small positives got bigger and more frequent. Hang in there Bella!
Am just finding this…this is pretty much how I feel at the end of every day…our children are adults now but he puts on a “all’s well/I’m great” attitude with them while grousing at me when they are not around. It’s exhausting to not be taking this personally. I can do very little “right”; and the focus becomes on all of his other physical discomforts. I end up feeling like the worst spouse ever.
WOW! Life can be really challenging! My partner after many many operations has sight in one eye but even that one has such exsesive scarring it’s a miracle he can see. The eye surgeon whom I call an angel, saved the good eye. We are in our fifties.
We went from having dreams to despair. Now 3years later he can and has been okayed to drive, thank goodness! We are passionate people who love life but it’s just not the same anymore. My husband gets angry and irritated very easily and I’m always stressed and the heart races constantly. I have to be his eyes a lot of the time, especially when we play golf…the swearing and cursing that goes on is awful, not at me, just at the frustration of what life’s dealt him. (He was a Golf professional). A once beautiful, confident, friendly man has changed. My heart aches for him and he does try hard to appreciate what he does have. I think what’s difficult is that you fall in love with a person, you grow with them, and you know them, then suddenly that same person is dealt a blow and changes, so you then have to re learn each other all over again and your prepared to do this because your still in love, there hasn’t been any bitterness or anger like divorced couples feel, YET 🙂 but there’s definitely a shift.
It’s very very tuff and some days you just want to bloody scream and leave but then a beautiful memory of my husband floats into my poor little brain or he’ll come and hug me like only he knows how to and all the pain and worry melts away!
Looking after yourself is the hardest part, we are always putting our disabled loved ones needs 1st. Do yourselves a huge favour for all your sakes and take time out to heal.
I’ve chosen to meditate. I turn off phones etc I play calming music and I stay quiet, I honour myself and it helps. If you don’t look after yourself everything will fall apart.
Hugs to you all ?
Hi Grace, this is such a hard thing to go through. Partners, parents and even close friends have such a tough time – you are always being the supporter , keeping your own grief concealed. I am so glad that meditation is helpful – it has certainly kept me sane over the years, though I am the person with the vision loss.
Have you considered calling blind services in your state? Your husband cannot be legally blind if he is still driving, but there is so much cool stuff to learn with the latest technology and he might find something to feel good about using images and games on a smart phone or iPad. There are also new “wearables” being developed. They have a high price tag but the developers might take an interest in a former golf pro using their special goggles.
If he can begin to get past the first anger and deep grief to find out what’s available , he will have taken a step beyond the fury (which is itself an important step – though hard for you to bear.) all good wishes, Hannah
Hi again Grace,
I am sorry for the delay in replying.
If your husband is interested in following up for himself that will be a small beginning . It’s most important that he initiates any follow-up. That way he will begin the long process of using the energy now going into anger and frustration in thinking about options.
Nothing will replace the wonderful immediacy and flexibility of good sight but one of these might help. a bit. They cost between $2,000- and $10,000 – and there are others.
Jordy Low Vision Magnifiers
OrCam: Help People who are Blind or Partially Sighted
eSight – Electronic Glasses
Great advise Grace, yes taking care of ourselves is important,, especially atm. I took opportunity after work yesterday to pop to the Beach and have some needed me time.
Thanks ladies, it’s nice to know there’s others going through similar things. We will get there.
My partner is blind in one eye and has just been diagnosed with macular degeneration in his other eye. We are waiting for the referral to the specialist to find out more information but he is really struggling. He has been off work for a week now and has gone back today but he said while waiting for the bus, he couldn’t see faces just a few meters away and was so worried about breaking down at work. We both work full time and rely on both of our salaries to get through. He has two young children who are with us every weekend. He is so worried about what will happen if he can no longer do his job because of his sight loss. This is all still so new and unknown to us and it’s so scary!!
Hello Grace,
Thank you so much for this heartfelt and very useful comment. I do hope that Emily and many others will find it a support during a time that can only be described as traumatic. I quite agree about finding a therapist but urge anyone in this position to interview three therapists before deciding. The nightmare dimension that Grace depicts is not known to all therapist – not even to most. It’s important to find someone with personal and professional experience of major loss. My own therapist had a patient with Parkinsons’s disease, another patient with blindness and some mental disturbance and a son with a learning disability. It’s a shock to have to think like this, but you and your partner need a therapist who really understands the turbulence of your present life.
I also encourage everyone after the first shock has passed to spend time thinking about a future if vision loss becomes severe. As Grace notes try to look for ways to manage a reduced income.
The other long-term objective is often to move to a location with a high “Walkability” score, so that the visually impaired partner can get to stores and medical facilities independently. Step by step a new life and sometimes a closer partnership can be found. All good wishes,
Hannah Fairbairn
Hello Emily,
My Partner wasn’t able to continue his usual job and was off work for 6mnths. It was a very worrying stressful time as we also needed both wages. He would walk about and people we knew would wave etc but he couldn’t recognise anybody, even if they were close. He hated this! This is when I devised a way of making up pairs of seeing glasses. This made him feel weird and awkward but you do anything to help make life more do able. It worked and after each surgery the glasses would change. It did help him get about better, it also helped that we live in a protected quiet area. As the surgery continued his eyesight improved in one eye (he’s completely blind in the other) and the home made glasses became prescription glasses. He’s now returned to work and though it’s work he would never had chosen, he’s extremely grateful that he has a job. His workmates understand and they all get along well with him and appreciate his valuable contributions. Your partner is in the very very early stages and your probably tired of people telling you to give it time etc but there’s no other way around it. Try and spoil yourselves with a little nurturing even if it’s a simple picnic out in the fresh air with a great bottle of red. Trust me those small, seldom pleasures will help you both as even 10mins of happy will give your minds and bodies a bit of reprieve. Also it’ll give you both peaceful time to talk about different avenues to explore. Hugs, Grace
Hello to all of you wonderful, brave, loving partners, friends and family! I read all these emails and wish I could wave a magic wand to bring back our loved ones sight. It’s such a difficult thing to live through. When my husband lost sight in one eye and almost in the other, it felt like we were in another dimension, a nightmare. We had just put deposit on a new home on a golf course,(my husband is a Golf professional). I thought it cruel to live on a golf course, when he may never see it let alone play the game ever again.
I said to the eye surgeon, should we change plans, lose the deposit, where should we live, what do we do?? The surgeon told us to continue with life, buy the home, don’t change anything, it’s important to forge forward. We did this and although it was the most difficult testing time in our lives with, anger, loss of patience etc, we equally found laughter, love, kindness and understanding. My husband managed to build a barby area, though a little wonky, he did it. We have boxes of glasses, experimenting with glueing +4 cheap reading glasses together, so they were +8 vision!Anything to help give him SOME vision. It’s been 3years of VERY DIFFICULT but with the help of an angel surgeon my husbands vision is ok in his right eye but completely blind in his left. Im always aware that he may one day be completely blind, in the mean time we’re trying to make the most of life as it is.
I’d strongly recommend counseling, earlier than later. A good therapist will give you help in relieving the pressures your faced with. Possible loss of income is terribly stressful, we had a difficult time working through that, but it’s amazing how when you have to, you manage to work things in a different way. The worst one for both of us was the loss of independence, just the simple tasks of driving to the shops, catching up with the kids etc was nerve wrecking and stressful. I feel for you all, I really do, I’ve lived it and am still living it, every time my husband bumps into something or overpours a glass of water, it reminds us. On the other hand there’s plenty of wonderful moments such as, hes able to make the best Latte ever, which he brings to me before I get up in the morning! :):) Brilliant!
Hang in there everyone ?
Hi There,
It’s Cheri here again – my last post was January 17th – 7 days after a tire blew up in my partners face. He just had his ‘good eye’ that was ruptured removed a few weeks ago and is recovering well from that surgery. It took him a good 2 months to accept that his vision would not return – even though I knew the minute I saw him in the trauma room that his eye was gone and not returning. It has been a heartbreaking difficult time. I just read Grace’s post which has so many similarities to my own – both lost the left eye, both relied on vision for their careers (my husband was a class 1 driver). We had also just purchased a new home days before the accident – although I chose to cancel the deal as my husband also has suffered a traumatic brain injury. I stayed frozen in trauma for the first 2-3 months before finally starting to be able to feel again. My husband has just started his process of unfreezing and the grief is hitting him hard. But what a strong man. We are fighting tooth and nail for him to be allowed to take a driving assessment. One doctor is being a real stick in the mud…. ugh… I had a small meltdown on his occupational therapist today and said forget everything – we will pay for it ourselves if necessary and begged her to find a way for this to happen. Grace – your story gave me some hope. he has lost his vision, taste, smell, he is disfigured, broke his wrist and his hand is numb all the time – he has lost more than most could bear… yet he still laughs, he makes me lunch every day, he takes such good care of me. Thank you for the hope that things can continue to settle and get better.
I went to counselling and it’s helping. My partner has started too – and my only advice to others is encourage it early and as much as you can – it really has helped and we should have started months ago before we hit meltdown mode. THank you all for your posts. I look forward to every single update I get from this thread.
Hi Cheri,
Thank you very much for this detailed and important story of strength and resilience. You describe the “frozen” sate of trauma so accurately and also how long it takes to work through grief, which does bring some kind of closure in the end.
About driving: Our younger daughter culd apply for a driver’s license using extended mirrors etc. Instead she and her husband have chosen a home within walking distance of stores and her work. She knows that she cannot scan roadsides and parked vehicles for pedestrians especially children as a person with full vision could, and won’t take the risk.
Is your husband ready to consider training? He is likely to feel much better about himself as he learns some of the amazing new technologies for people with vision loss.
All good wishes,
Hannah Fairbarin.
Hello Cheri!
I’ve become a bit of a sooky la la and I get emotional when I read these posts. It’s not always tears of sadness but tears of pride that your all such brave amazing humans. We’ve had our fair share of frustration with terrible medics. One doctor asked my husband what team he barracked for and before he could answer the doctor replied laughing ‘oh well, who ever it is, your probably a ONE eyed supporter’!!! You can’t say much as your there waiting to get the go ahead to drive and work. Our main surgeon (our angel) at the Eye n Ear hospital saved Richards good eye even though it has a lot of laser work, he’s doing well. We are so thankful as the original doctor was the one who ruined the other eye. My husband has, had the most beautiful blue eyes and I’m not ashamed to say that I miss the way he was, the way we were. There were such low times but if there’s love even a glimmer, that’s the magic that gets you through. As for finances, it’s tuff as you’ve basically got no benefits to help prop you both at the low points and you end up, as you said, ‘I’ll just pay and do it Ourselves’!
Your man makes you lunch! He’s already showing signs of forging ahead and I’m sure he desperately wants to be and feel normality. 🙂 The surgeon told Richard that his brain will slowly adapt to the loss of an eye over time, which is what Richards feeling is starting to happen. Our brains and bodies are amazing and healing will come, it just happens slowly. We’ve decided not to play golf together, as I can’t bare his frustrations and hes found a few buddies to join him instead, (he can’t see the ball flight amongst other things re sense of depth). This is what you need to decide on your journey together, what you share, what you both do separately, what works and what doesn’t. It’s important to be honest with each other, as much as possible, because you can’t turn back time and it’s about moving forward.
Big hugs, Grace 🙂
Sent from my iPad
A funny story for you all. I was reading in bed the other night and hubby came in and asked what I was reading. I was reading “the girl who took and eye for an eye”. He covered his good eye and said I love you honey and rolled over protecting his face. Lol it didn’t even occur to me! We Are trying to find humour in this crazy new world we live in!
I just stumbled upon this thread topic. I’m struggling with my vision loss. It’s been three months since i was hospitalized in a diabetic coma. At age 43 I had no idea I had diabetes. It’s rocked my entire world and very foundation of myself as a person. No one understands when I tell them I can’t see. It’s gone. How do I live in this unfamiliar place? It’s scary. So scary. I’m done trying to reach out. I’m on insulin to LIVE. If I stop the insulin, what happens? I DIE sooner rather than later. Has anyone ever thought of the power that gives me over my own life and death? Much much easier than suicide.
I am so very sorry that you have had this terrible shock and the resulting trauma and great loss. You do not say whether you lost all your sight as a result of the diabetic coma? I lost all but about 3% of my sight overnight at 33. But our situations were not the same because I did retain some sight and had always had some vision problems, so the total shock and loss that you are enduring was not so complete.
I am so glad that you reached out to “When You Can’t Believe Your Eyes.” If ideas of letting go of life do return please get help at once:
1-800-273-8255 National Suicide Prevention. Available 24 hours everyday. You will be listened to with real care and sympathy and also privacy. Calling old friends or family who have been through some kind of serious loss can also be a support.
I hope you are getting the best possible medical care with doctors specializing in diabetes and diabetic retinopathy. Have you called Blind Services for your state? After such sudden sight loss they will almost certainly arrange an appointment with a counsellor called a vision rehabilitation therapist or counsellor. Some States offer people with vision loss many services, some fewer, but you are likely to get attention and support.
At first loss of sight does seem like the end of life, but it is far from that! The fact that you reached out makes me think that you will regain full belief in your own value and perhaps become more of a leader than you were before. You will also rediscover everyday enjoyments, even though this must seem a ridiculous idea just now.
Please do comment further or email me. Depending where you live, I might be able to offer you more detailed suggestions.
With warm good wishes, Hanna Fairbairn.
My husband was diagnosed with RP back in 2005 and finally lost his drivers license last year. His vision is getting worse by the minute it seems and he refuses to accept it. He lives a lie and most people outside of a close knit group don’t even know about his condition. He is very good at smoke and mirrors. All the driving falls on me, as well as most of the household chores and cooking. My biggest fear is what would happen to him if something happened to me?? He refuses to take an Uber to an appointment if I have a conflict and can’t drive him…he is too stubborn and says it’s too hard for him. It is just so frustrating for me. I understand he is struggling, but so am I. I am not a super hero and his blindness is not just happening to HIM. I feel so incredibly guilty for complaining. 🙁
H
Hello Jane,
This is such a difficult situation, and you should feel absolutely no guilt. Instead you need to look after yourself and feel all the compassion you would feel if this was happening to a dear friend.
I think you have to take the lead. Phone your State Blind Services and ask what is available for your husband. Depending on his age he will need plenty of training when he is ready. There is so much to learn in the new world of accessible technology. If this seems too radical for now download the Vision Connect app onto your smartphone (I am hoping you have one) and research what agencies, vision support groups and other services are nearby. (Some states are way better than others.) Also read the VisionAware website to find support for partners. I think you would also find my new book “When You Can’t Believe Your Eyes: Vision Loss and Personal Recovery” helpful. Denial is very common, but getting stuck in it is stressful for you and will damage the relationship. If there is a vision support group nearby you could attend a meeting and then tell him about it or whatever strikes you as a good way forward. But you must make a move! All good wishes,
Hannah.
YES!! my husband has been denying his RP for years. I think he’s been able to do this bc it has been slowly deteriorating and he’s just adjusted his thinking all the while, responsibilities have shifted to me. He absolutely refuses to have anyone but me and our children, who don’t live at home, guide him. He has gradually given up our couple friends, family members, gatherings~and rarely wants to talk about how this impacts us as a couple beyond the obvious of MY driving. He goes from feeling sorry for himself to being autocratic and demanding, inflexible and controlling. Where is the man I married????
Hi Madeleine, This level of denial does sometimes occur with slow sight loss such as RP and with Patricia’s husband’s diabetic retinopathy. Exactly as you say people adjust to each loss trying to hang on to their sense of themselves. This denial makes life for their partners less and less tolerable. This is a huge challenge for you who are already dealing with too much. Before you can decide what you want to do you need support! Please read my book “when You Can’t Believe Your Eyes” details on this website, and also check out VisionAware .org a good website with plenty of information. You also need to contact Blind Services in your state to find out what training they would offer your husband. At the same time Interview a therapist for yourself – try to have 3 interviews and choose the person you feel most at home with. Take someone with a master’s degree such as MSW, a wide experience of disability and also of mental health. She/he should be able to get plenty of sessions for you. All good wishes, Hannah
My husband had a stroke and has permanently lost most of his vision only 2 weeks ago. He is very angry, throws things and alternates his temper with Great Depression. I don’t know how to help him
Hello Jane, I am extremely sorry for your husband, and for you too. This is traumatic for both of you. Anger is very usual and so is depression. This first period will pass, though it must feel that this is impossible for now. If your husband would entertain help with mental health you can search for a psychiatrist who is exterienced with severe disability , or a therapist. Psychiatrists are have more experience with anti-depressants, but finding someone who understands about severe disability i.e. the combination of a stroke and loss of much of his sight at once is the important thing. Next you should contact the blindness service for your state and find out what is on offer in the way of , for instance paying for a visit to a low vision optometrist. Your husband my have lost nearly all his vision but still benefit from a video magnifier or similar. Go to http://www.VisionAware.org. They have some good suggestions for what to do at first. Lastly I have just published a book called Vision Loss and Personal Recovery by Hannah Fairbairn which you can buy on Amazon, which should help you both get through this very tough period. Write again if you want to. Hannah Fairbairn.
Hello I am new to this experience, my boyfriend got shot at a young age about 22yrs old. He is 55 yrs old now, and has been doing very well. At times he get frustrated because he will never see again..he has his own way of doing things but as his girlfriend I would like to do more for him. How can I make him realize that he is not alone.
Hello Gladys,
Thank you for writing this comment. It sounds as if your boyfriend likes to be independent, which is great!Probably the best thing you can do for him – apart from being loving and encouraging which we all need – is to inform yourself about the latest technologies for people living with vision loss and then mention them to him without being pushy. With vision loss comes a huge loss of general information and so most of us miss out on innovations that might interest us. For instance does he have an Alexa voice activated computer in his kitchen? Does he have an iPhone or iPad where the speech is much superior to Androids? does he have some remaining vision and use a Video Magnifier? Does he get training from his state blindness services. Sometimes really bright people (including me for a long time) can get stuck thinking they don’t want training but we all do! He sounds as if he is his own man, which is the most important thing, but he doesn’t have to do it alone. All good wishes, Hannah
Hi All
My boyfriend of 16 months has Glaucoma, when we met he was still driving but had to give up driving within a month of us meeting, over the next 10 months he had a number of operations to preserve his sight. I have been by his side through all of the treatment and supported him as best i can. we live 145 miles apart and i see him generally every 2 weekends. we have been on holiday together and get on very well.
Because our relationship is a long distance one he doesn’t always tell me everything.
He is now registered as sight impaired as his sight has got much worst. He has changed his job and made many changes in the last 12 months and i have done all i can to support him without being over the top as he is very very independent.
We recently talked about our relationship as I would like us to move in together and move our relationship further, I guess i hadn’t approached the conversation because i thought he wasn’t ready for this, but he brought this up.
He isn’t ready for me to move in, he wants our relationship to continue as it is and said he doesn’t know what is happening in his life, so therefore he feels happy as we are, as he lives one day at a time. he lives in a house at the moment and doesn’t know how much longer he will be able to use the stairs, or how long he will be able to continue to work because his sight is failing more all the time.
I accepted his condition when we met and i would not and have no intention of leaving him because of his sight, my concern is that he doesn’t really want to be with me?
I have always tried to support him and let him be as independent as possible, I do not do anything for him unless he asks me.
He is going on holiday to see his friend soon and is going without me, which is really hard.
we have lots of plans for this year
I am in love with him, he said he doesn’t love my but is very very fond of me, is this him putting up barriers because of his condition?
I need help on how to deal with this, I do not want to walk away from the man i love dearly but need help to understand what to do for the best and how to support him without doing things wrong
Thank you so much for your help in advance
Gillian
Hi Gillian, This is such a difficult situation for you, and even more for your boyfriend. You know him and I do not, so I can’t comment on his feelings , but it’s likely that he is confused and unhappy. Personal adjustment, support, and training are the long road ahead of him before he feels like himself again. I think it speaks to his character that he does not want to lean on you. You will need to decide for yourself how long you want to wait, especially if you are hoping for a family. I’m sorry if this sounds too harsh, but I want you to understand the gravity of what he is going through.If you want to educate yourself about vision loss and blindness please read my new book When You Can’t Believe Your Eyes: Vision Loss and Personal Recovery which is available from this website and on Amazon. Please write again if it would be helpful. All good wishes, Hannah
I feel for you,
They are independent but also scared at same time.
It’s been 5 years my partner and I have been together. (He lost sight from accident10plus years ago) he’s finally ready for us to move in together:-) if there’s love on both sides and you can be patient it will happen. He may need counselling.
My partner recently sought help for PTSD from accident.
It’s hard. But they learn to adapt and can learn how to use stairs again. And res kill themselves.
Hugs
Hi Cassandra, Seems perfectly natural to me that dreams of being with someone sighted arrive now and then. This pandemic time is leaving us all shut up either together or separately and the ordinary stimulus of meeting people and going places is absent. I expect a lot of people are having weird dreams just now – processing the cabin fever as well as the blind/sighted relationship. All best wishes, Hannah
My partner had anxiety panic attack last night, short of breath, rapid pulse. Felt like he was going to die.
So I drove back to his place after only being home for half hour.
Brought him back to my place. Took him by beach to ground him.
But do you think I could get to sleep afterwards?
It’s hard to detatch from the stress of it all.
Hi Ladies,
Some advise please:-)
My partner lost all sight (10 years ago) before I met him.
He was an active person (snow boarding basket ball,hicking etc) but now goes to gym instead as it’s accessible. (But obviously not for last 8weeks due to Covid)
Both of us have put a bit of weight on in last 8 weeks.
I had weird dream last night
That I was with Someone else (a work colleague, whom I haven’t met, as we do mobile treatments for clients) that I wanted to be with him because he could come hiking with me etc.
I feel bad, but also understand that part of it is just emotional processing.
Anyone else had similar experience?
Thanks in advance
Cassandra
Hi Grace, I met my partner after he has become visually impaired. He lost his sight as a teenager and has lived most part of his life as a visually impaired person.
He so fear that one day I will leave him. We engaged to be married next year. I noticed that he is constantly asking me if am willing to continue. Atimes he nags.
We are Nigerians and we live in Nigeria. There is a lot stigma. People keep asking me how am going to cope.
I visited him in May because we stay in different states for now. We had several misunderstanding. We resolved it. Of recent, he is so fearful that I may leave him
I suggested that we see a counselor but he is refusing. Am trying to convince him.
Please, how can reassure him of my love. What can I do to show him that I love him. The truth is I want to spend the rest of my life with him .
All you can do is be you, let him feel your love.
Also take care of yourself. One day he will realise you are genuine.
Marriage will help, counseling will help too. But they have to decide, they want to seek counseling .
Hello Blessing, I’m so glad Cassandra replied to your comment and I agree with all she said. It is hard to be apart- distant relationships are so tough! While you are apart do spend time reading up on blindness. You can buy my book When You Can’t Believe Your Eyes or apply for a free copy, which I will gladly send. Although the book is about the US you will find a lot in it that will be useful going forward. Hannah
Hi everyone my name Susan. My husband has macular degeneration, we will be married 44 years August 7. He has been dealing with macular for quite a few years. Within the last few years his sight has gotten really bad, he no longer drives, he no longer can go hunting, he can no longer read, he no longer gets his own medication, etc. It has been a big adjustment, for him and me, even though we new it was coming.
I miss the independent person he was and I felt taken care of, now it’s the other way. Like if I get lost driving or need help looking at signs he can’t help me. Sometimes I get stressed with the responsibility. We have to have our son come over to do things for us and after awhile you hate to ask. Lots of things play I to this adjustment. We are 65 and 67. I’m glad I found this group.
Thanks
Hi Susan, Happy Anniversary for August 7! I hope that now you have reached out this next year will be better for you and your husband. Thanks very much for writing to Vision Loss and Personal Recovery and to this excellent group of commenters all dealing with the same hard circumstance that you are. And of course the virus means that services for seniors with vision loss are limited for now. You don’t mention which state you live in, services vary a lot from state to state. I do recommend encouraging your husband to get as much training and maybe equipment too, as your state blind services will provide including writing to your senators or congress people to add pressure.With Technology training he can read newspapers, magazines and websites. Is he signed up with NLS Talking Books and also the NFB Newsline?You may be way ahead on all this, but the more he can do for himself and for you the better he will feel. Everyone including me takes a long time to believe in their sight loss and then allow themselves to grieve (you too.) Once he is feeling just a bit better work hard to get him started on self-advocacy to get what he needs!
Susan,
I am wondering if your husband macular degeneration specialist mentioned Charles Bonnet Syndrome? My husband has lost his vision due to glaucoma. When he first started experiencing hallucinations it was heartbreaking and terrorizing — I feared he had PD and/or AD. I carefully observed what was going on — when the hallucinations occurred and what he “saw”. Dr. Google and I made an accurate diagnosis — Charles Bonnet Syndrome. At his next visit with the glaucoma specialist I talked her her about it. She was matter of fact. Wasn’t surprised. WHY they don’t have brochures in the waiting area or mention to patients or their caregivers is hard to explain. Best answer is they don’t get paid a penny to spend a minute to discuss CBS. I hope you will google it and read up. I also learned there is a form of CBS that people with hearing loss sometimes experience — they hear music! My son-in-law has significant hearing loss from his military service. He “hears” classical music. I just try to inform everyone with significant vision loss about Charles Bonet Syndrome as it is often misdiagnosed at Parkinsons and/or Alzheimers. Some folks move into assisted living. Or worse they don’t tell anyone for fear they are losing their minds. Help me spread the word. Please. I would also like to share that I try to help my husband be more engaged. I have him help me grocery shop. It’s really about making him feel like he contributes. He helps me fold laundry. Whatever I can have him help with is good. I read aloud to him. It’s something we both enjoy! Who knew? As I’m driving I will giving a running dialogue of where we are, etc. I help with all his activities of daily living and only hope my health holds out. I’m often sleep deprived and everything is taking a toll on me. We are retired and I just try to make every day the best I can for him. Keep him engaged and stimulated. I’ve lost significant hearing. We jest that between us we have maybe one good body.
Thanks for sharing such positivity and a content that shows a ray of hope for the visually impaired. It’s a great blog. Even we deal in similar services. We at Braille Institute is a non-profit organization offering a broad range of free programs, classes and services serving thousands of students of all ages to empower themselves to live more enriching lives with blindness and vision loss. To know more, and seek help, visit our website at https://www.brailleinstitute.org/about-braille-institute or call us on (323) 663-1111
I am currently goin through this with m husband and it happened so suddenly. We are hoping a surgery or two and controlling his health will help him regain his eyesight but as of right now he is depressed often and it is rough for me to remain strong sometimes but I try to be a good wife and help him through it.
Hello Cici, I am so sorry you are having to go through this extremely difficult time. Make sure you have one or two family or close friends to talk to and remind them not to spread any news until you and your husband kno what the final outcome will be and how he wants to talk about it – hard to do but important! Be sure to get the best possible eye doctors in your region. Please read my book: When You Can’t Believe Your Eyes: Vision Loss and Personal Recovery. it’s available in 4 formats including a free accessible eBook from this website. The trick is to prepare for some permanent loss of vision in as many ways as possible. Educate yourself while waiting to find out how much vision your husband will have, and when he’s ready he should read the book too. In the meantime be sure to give both of you treats and little outings. All good wishes to you both, Hannah
Hi my name is Patricia my husband lost his sight in one eye 7 yrs ago now even after surgery it proceeded to get worse! Now he can’t see at all! He’s lost all his independence I have to drive him around! Do appointments with him all the household upkeep is falling on me! Now he’s just sitting in his chair and only leaves it to go to the bathroom! He won’t let me leave the house without him! He tries to schedule when I can leave and he must follow me! I’m finding myself angry and want my freedom but I don’t want him to expect our children to forfeit their freedom! I just feel stuck! He has diabetes and refused to keep it controlled he refused to get a eye exam until it was to late! I feel he ruined my life because of his choices! And he ruined his too! Now he won’t shower out of fear so he’s unkept on top of being depressed angry sad where do I go from here? Sincerely Patricia
Hello Patricia, This is not a healthy or a safe situation for you or your husband. I am so sorry that you are having to deal with it. You need support both family and professional. Does your husband have brothers and sisters or cousins who can talk to him preferably regularly by phone? Or old friends who could do the same? You also need professional support: Contact blind services in your state and explain the situation. Be very clear and detailed. Also your husband and probably the whole family will benefit from support with mental health,(family and individual counseling and perhaps an anti-depressant) but that may be for later. You may have to wait till after Christmas anyway. I hope you can find some time for yourself and some fun for the children. Keep things very simple, you probably are, so you get through the Holidays, then act with determination and perseverance to begin changes. Read my book When You Can’t Believe Your Eyes, details on this blog. All good wishes to you, your husband and the children for the future, Hannah
Hi my name is alice I found this website wonderful thought I was alone, I will be brief
my finance is going blind, glaucoma and macular, I try so hard to help him don’t know what to do sometimes, got him a therapist and with the local lighthouse but they do zoom I will try and connect to help him, I need some kind of caregiver help, don’t want to make it obvious I need help do have a therapist I get angry some times tks alice just had to vent and he is the one who is going blind, just want to do my best to be supportive, god bless u all cant even go to go out during this horrible virus, have him walk every day bless u
Hi Alice, Thanks very much for reaching out. It’s really hard to deal with your fiance’s loss of sight and your own reaction. I am so glad that you and he have therapists. I hope you have 2 therapists, you need separate ones so you can each talk freely . Therapists who truly understands the depth of loss that you and of course your fiance are suffering can be hard to locate Make sure your therapist (and his) are experienced with severe disability within a family and know a lot of resources for you both. I am also pleased that you are working with one of the Lighthouses for the Blind so you can get in touch with the wives and girlfriends of other people losing their sight. I think you would find this very helpful. Ask the Lighthouse about it, even in the pandemic they should be able to link you up by phone with one or two others. Best of luck and please read my book “When You Can’t Believe Your Eyes: Vision Loss and Personal Recovery . You will find all the details on this blog. Hannah
Hi there,
I’ve been reading your posts. My husband and I are both 40 and have a 3 1/2 year old son. Last year, as a result of cancer complications (we think), my husband experienced severe vision loss and is now legally blind. He also experienced some hearing loss, but not nearly as bad as the vision. As the caretaker, I’m losing it. He’s on disability, I fill out tons of paperwork, do most of the childcare, cooking, etc. etc. etc. The only thing I don’t really do is take him to medical appointments because I’m working full-time and taking care of our child who goes to school near my work. So, my husband’s mom is driving him around a ton. I’ve always dealt with anxiety, but now it’s depression too. I’m scared about what our financial future will look like, even though I know we’re fine; it just not what I expected it would be. I’m scared that my son won’t thrive, even though he’s doing great now. Will he be embarrassed by his dad? Will he be jealous of other kids whose parents don’t have disabilities? I feel this overwhelming urge to protect and shield my son from my anxiety, my depression, my fears, and overall, his situation. My husband is learning computer software and apps, so that hopefully, one day, he’ll be able to go back to work in some capacity; he doesn’t know how, when, or what. I’m anxious about that. We have therapists we’re working with, including one who specializes in low vision. We have tons of support from family and friends too, yet I feel alone because I have yet to meet anyone going through anything exactly like me. It helps to see that there are others here, but I just don’t know what else I can do besides try to be patient, take it one day at a time, and just focus on the present.
lHello Rachel, This is such a traumatic event for you as well as your husband’s. I am so glad you have plenty of support, your finances are okay and your son is doing well. Often like other great shocks and changes it takes about 2 years before your husband and you come up for air and start to think about his future(and yours.) Although this will be a surprise to you, one key question is which state you live in? Because your husband will need to have a lot of training in Vision Rehab. The best training is to go to a residential center for maybe 3 months. This is hard to get your head around, but please start researching it by calling your state’s blindness services. Your husband is of prime working age and will be so liberated and empowered by good training: more technology but also cooking, getting around your town or city (including maybe taking your son to school)and most of all getting employment. Of course your son will be embarrassed by his parents,both of you! But young kids love helping, and watching his father find courage and acquire great new skills will be a great example. I am legally blind and brought up our 2 daughters with my husband. They have both done extremely well. .)Hold on tight for now and please read my book. When You Can’t Believe Your Eyes: Vision Loss and Personal Recovery.
Hello, I just came across this site while looking for resources to deal with my failing eyesight. I’ve been blind in one eye since infancy, and have a genetic eye condition (FEVR), but enough vision with correction in my good eye to function normally (apart from driving). That’s been slowly declining, even with many surgeries. And now after another basically unsuccessful surgery is just getting riskier and my sight in my good eye is blurred. I’m starting to try to make plans for the future that I didn’t expect to make until I was much older. I always knew in the back of my mind that I could, and probably would, lose vision in my good eye, but it was stable for so long that this comes as a painful surprise. I am in my early twenties and had hoped at least to marry and have a few children while I still had sight. I’m realizing that even with the knowledge in the back of my mind for all these years I’m still really unprepared, sad, and panicking. I am making adjustments as far as my career is concerned (and I had always planned it with this in mind), but I’m afraid it will be much harder to find a wife who wants to marry someone who is blind as opposed to someone who can see but might go blind sometime in the distance future. And I’m grieving not getting to see my future and wife and children. That probably seems petty at this point, but it’s been weighing on me more than one would think. I’m also struggling with deciding whether to learn braille and other alternative techniques. For now, obviously, I can still read some print, but it’s a painful and slow process and I find that I’ve been slowly leaving behind many things I used to enjoy just because I’ve been unwilling and afraid to adapt. It’s hard to plow ahead and make the necessary changes when you’re still grieving and hanging on to the old life. I had been so sure I would have my sight while I was young and could get a lot out of life before I went blind, but now it seems like I’ve had barely any time and I’m desperate and sad.
Hello Quentin, I am so sorry that you are having to go through this terrible loss at the beginning of your adult life, and there is no pretending that this is anything but traumatic. I agree that anticipating grief does not take away the shock, but there are some advantages to losing your sight so young. First it is much better to marry someone who knows and loves you as a person who has come through sight loss and has built a satisfying life for himself. If you read some of the many comments on this post you will understand that having your sighted partner go blind is very hard to handle when
you married him as a sighted person. Another advantage in the midst of this huge disadvantage is that As a young adult you should be offered plenty of vision rehab training. As soon as you are ready (which may not be for some time) contact blindness services in your state and get yourself months of training. If your present state does not offer much consider moving to another state with more provision for training. Because you are unattached you are not held back by marriage, a house, and a family from moving to another state. Massachusetts is considered to have one of the best records for vision rehab education, and some other states also offer a residential training (generally considered the best). When you are ready call around to find the best offers for a hard-working vocational rehab counselor and training. Some states offer almost nothing. It was very smart of you to pick a job where your loss of sight is not a big disadvantage. I hope the job can move to other states if necessary. There are plenty of blind/sighted families including my own as well as blind/blind couples with families. You will find much more detailed help in my book “When You Can’t Believe your Eyes: Vision Loss and Personal Recovery” available as an eBook/Audio book on Google Play books as well as in print, and on talking books and Bookshare. Please read it and write again if you need more online support. Hannah
Good evening. My husband is blind and I love him dearly but sometimes I run out of patience with him. And I feel really bad after wards. Please help me with some tips on how to improve and making him happy without making him remember his lost sight. Thank you.
Hello Jemimah, Thanks for writing. I hope some other wives and girlfriends will also respond. You know it’s almost universal for anyone who loses sight to go into denial for quite a while; not able or willing to face up to what has happened and start to think about what’s called vision rehab or blindness services and training. It sounds as if that’s where your husband is right now. You of course will be as kind as you can manage but you do need to be thinking about maybe counseling, a good therapist, and training for him, so he can take advantage of all the cool technology and devices that are available. Please read my book When You Can’t Believe Your Eyes: Vision Loss and Personal Recovery (check the book page on this website) and encourage your husband to read it too when he’s ready. There are 3 formats which he can access with speech and listening. Also check out http://www.TimeToBeBold.org to find services near you. Warm regards, Hannah Fairbairn
Jemimah, it’s hard not to lose patience. If you can try to imagine how you would feel in your husband’s situation. I recall seeing an exercise where the seeing partner/caregiver wore a blackout mask. Try that for a day. Getting out of bed, going to the bathroom, brushing teeth, eating what you can’t see, I can tell you that it is so disorienting. Confusing. Things that you have done over and over become a huge challenge. Empathy is a gift. It’s something we can practice until it comes naturally. It’s hard when our efforts seem to be unappreciated. They’re not unappreciated — it’s just that our husbands are so frustrated with their circumstances. They would rather not be a burden. Do your best to make every day the best — for both of you. Try to keep your husband stimulated and engaged. Listen to music. Read aloud to him. Reading aloud is something my husband and I take great joy in. You can’t imagine the different subjects we’ve read about plus several biographies. I read both fiction and non-fiction. Right now I’ve got two books going. At night before I turn out the light I read from Bibi Netanyahu’s new book. This morning I started reading Barbara Sinatra’s book “Mrs. Blue Eyes”. We recently read a very interesting book about the Dust Bowl days. We read a book about the building of the Transcontinental Railroad. We read Jimmy Wayne’s book “Walk to Beautiful” — and so many others. WE read them. It engages both of us. This is actually a very special time we might not otherwise experience the same closeness. There IS a silver lining in every situation. Blessings.
On Aug. 9 we went to eye doctor for a tune up. My husband who has
Macular Degeneration and knew this, was told he has a very aggressive
dry Macular Degeneration the doctor seen. Told my husband not to drive,
and also inform him, he would lose his sight in 3-6 months. My husband is
one of these people who like to keep busy and help me around the house.
I do not know how to handle any of this future stuff he is handling over
to me. The eye Doctor told my husband not to take the pills for his eyes anymore
they are not working anymore. The worst to this is that his father is living with us and he is 92 yr. old. He has his own medical problems. I am crying for help in any
way please. So I am the taxi driver, cook, maid, wife, and caretaker. I can’t handle
both my husband and his Dad. So I am scare to do this all by myself needing help,
Please.
Lucretia Fritts
Hello Chris, It has taken me a couple of days to get back to you. First I am so sorry that you and your husband received such alarming news. You should certainly get a second opinion from an ophthalmologist specializing in Macular Degeneration preferably in an eye clinic or hospital associated with a university. The doctor you saw may be correct or may be over-stating the case. Second, do you have any family members of your own or your husband’s who can be called in to form a team? They can help even if they don’t live nearby. You can’t handle this alone! You will need to talk to your husband and your father-in-law telling them that this is too much for anyone to handle , and that you must have support and help if the household is to remain as it is. I think they will be able to understand (though they won’t like it.) Third, you should call social services in your state and ask for blind services, explain what is going on and ask for services for your husband. There will be more if he is of working age. This will be a starting point. My email is on the home page of my blog http://www.VisionLossandPersonalRecovery.com. Please write again and if you can, get a copy of my book When You Can’t Believe Your Eyes details of which you will also find on the same home page. All good wishes Hannah Fairbairn
I lost 100 percent vision in my right eye in a matter of days. My boyfriend made a comment to me essentially saying I’m not as pretty like I used to be because my eye turns out sometimes., I’m so hurt
Hi Debra, I am so sorry your boyfriend made such a careless remark. That kind of remark when you are new to a sudden loss of good vision can cut so deep. Your confidence can take a big hit! But the most important thing right now is to make sure you are getting the very best medical advice about your sudden loss of sight. Don’t settle for anyone but the very best ophthalmologist (eye doctor) in your city or state. If you know what caused this loss of sight then you need an eye doctor who specializes in that kind of eye condition or disease. Work hard to get to the very best eye clinic -one affiliated with a university medical center with several specialists in your eye condition and the latest equipment. That’s Number 1!! Then over the next few months when you are more ready, you will need to talk things over with your boyfriend. It may have just been a stupid remark which we all make now and then. All the best for your future. Hannah Fairbairn
Hi. My husband’s left eyes is completely blind, and his right eye is slowly dying. He is angry most of the time. I have been reading up on tips to try to improve things for him the best I can, but I have ADHD and sometimes I am unsuccessful. I have covered every window in the house with a blanket or towel where he is very light sensitive. But sometimes I forget to give him his eye drops. I sometimes forget to do certain chores around the house, but I do always make sure there is a clear path for him to walk around. I feel I am failing him. I don’t know what else I can do.
Hi Margaret, I apologize for the delay in replying to your comment. You are giving much love and support to your husband. You need to get support for yourself and help for him. I will email you and also make a list of the best resources for everyone caring for a family member who has lost sight. All good wishes to you, Hannah
Hello everyone. I usually don’t do this but I’m beginning to feel depressed and overwhelmed. For the past 2 years my partner and I have been transitioning to a sighted and a blind couple. Not sure if those are the correct terms. We are not married but have been together 8 years. During the first part of our relationship we have had a really good relationship. Our bond was the fact that we were able to travel and work together……felt like we could conquer anything. Fast forward to the last 2 years, my boyfriend has lost his eyesight mainly because of his diabetes and I know I need to be there for him but things are not easy and I sometimes feel guilty that I feel the way I do because he is going through this. My dreams of having a home and just growing seems unachievable. I am
the only one that works, pay the rent and all the bills, groceries and I have a daughter that I must take care of and can’t take a break. Things can’t get done unless I do it and to be real honest it’s a lot. I don’t know but I sometimes feel I’ve lost a part of me. The way someone feels when they have lost someone they love and can’t get back. It’s like I’m in mourning. He is 38 and I am 33 and I feel we have so much more left in us then yet I go back into this dark place. Need some good advice
Hello Lisa, I don’t know how delayed my response is, so I will also write to you by email. There is a post on VisionLossandPersonalRecoveryit’s called “The Pitfalls of Caregiving” You have to get your partner into vision rehab training. I will email a link. This situation is not something that can continue – and bboth of you (and your daughter) will feel better when he is beginning on independence. Hannah
Thank you for being an advocate for positivity and kindness on the internet.
Thank you Kury. Everyone going through vision loss and all their close family and friends need plenty of kindness plus good accurate information. Hannah
Hi there, well my twin brother recently has gotten diagnosed to become blind. We are very close, we’re the only one for each other and my family isn’t very supportive and is actually very neglectful tworads my brother situation. So I’m constantly thinking of figuring out a way to cure him though I’m 20 and not sure how to do so cause we’re in a country with bad economical situation and the only solution I think is for us to first leave here . we’re both queer too and live with a religious family and I’m not sure if we can stay longer in this household. I’m not a very healthy person mentally and physically (I have a heart condition) . I’m really scared and depressed, I feel it’s ruining me and I have no one to trust. Thanks for sharing your notion about this, I felt understood and seen.
Hi Hanna, I am sorry for the delay in responding. I have been sick. Do you know your brother’s eye condition? Please get him to the best ophthalmologist you can, preferably at a big eye clinic linked to a university where there may be many eye specialists. If your brother’s English is as fluent as yours he can get assistance and training at the Hadley Institute – a free world-wide service for people losing sight. Go to https://hadley.edu/www.Hadley.edu%20very best wishes, Hannah Fairbairn