Dealing With Vision Loss in Your Partner, Parent or Best Friend

Back view of older man walking down medical hallway with a woman's coat under his arm
Back view of older man walking down medical hallway with a woman’s coat under his arm

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.

 

 

18 thoughts on “Dealing With Vision Loss in Your Partner, Parent or Best Friend

  1. 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.

    1. 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.

    2. 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

  2. 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?

  3. 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.

  4. 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.

    1. 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

    2. 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

      1. 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

  5. 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?

    1. 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.

      1. 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.

        1. 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 .

  6. 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.

    1. 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

  7. 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 🤗

    1. 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

      1. 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

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