I realize most of you are several timezones and continents away but I need some advice. As most people here know, I've been with my lady/wife Marilyn since 1975. Long time and we've grown together and shared children and grandchildren and soon great grandchildren. M has been doing intraocular injections ( shots directly into the eyeball) for over a year and a half for advanced macular degeneration. She had cataract removed from one eye and a new lens implanted. So... The Drs. tell me ( not her yet) that there is little hope for saving her vision. All we are doing is paying Drs. for treatments to slow the inevitable. Cataract in other eye now. How do I approach her with this and prepare her for greyness and darkness the rest of her life? No more sewing plastic canvas or cross-stitch, no more viewing her laptop, no more relishing her home and family, the pain of asking prices in stores, the embarrassment of the failure of her vision. Life sometimes sucks and i need to be there for her. Sorry if I sound maudlin, I am.
Sorry to hear more bad news I have no idea what you should say to her I do come across blind people walking in the city, amongst all the people & traffic, doing things like gettting a coffee, crossing the road, etc. Guide dogs are very impressive. I've even seen some working, doing things like reception & call center work, and doing it very well. Ears tuned in like a bats, you can left wondering if they really were blind since they were looking right at you and were so speedy using the telephone. I don't have alot to contribute to this though, i'd say it's Nexxo time.
I wish I had something to say but something tells me that this is better left to nexxo for advice. If there is something though that i might be able to recommend it is that a lot of times you can get photos to be etched into or a relief done of them. make some of those for her in case the worse happens that way she knows what she is looking at when she goes over the photos and can call upon the memories to bring color to what she cannot see.
Well I can only go on what I'm like being as I have no idea of the dynamic you have with your wife. Be blunt about it, as much as you feel you can.. There's not really an easy way to tell anyone they're due to lose one of their major senses. If possible avoid the whole "it's a new beginning" line because it's mostly BS and if you've been with her going on 35 years she'll see right through it. Be supportive, try and get her to understand that whilst she is losing a big part of her life, that you'll be there to support her, that you'll learn braile with her if needs be. If you can try not to go down the whole "embrace your sight while you still can" road because that'll just make her feel worse when it's gone... Make sure though she does get to see the things she really does want to while she can, probably gonna cost if it's something like the Sistine chapel, but I'd say it'd be worth it. IIRC you have an adopted son or other relation with extremely decreased visual acuity (compared to 20/20) maybe have a chat with him and ask what would be the best way to relate the info, after all he's lived with not having that sense fully for all his life.. Try and find new activities that can transfer her creative ability over, I know it sounds silly but the human body is extremely adaptive and as much as she will go through grief, she will in the end accept it and adapt. (And with regard to laptop, if she can touchtype, there shouldn't be much of an issue, dunno about windows these days but macos is extremely friendly towards 'Accessibility Options' such as full screen zoom, colour inversion, spoken menus text etc.) Either way, Hope I've been helpful and I wish you and M all the best dude.
With news like this, I think it is better not drag it out. Then just be there for support. Also I would not look at it as a disabling event, but as a new adventure. Just my 2¢
Any words would probably be mere hollow things. Her knowing that you will always be there for her will be more of a comfort than any advice we might offer. Just be the man you are for the woman you love.
I'm afraid there's not a lot of ways to go about this. I'd just tell her as it is, and assure her of my support.
All I can suggest is that one of my best friends is blind, I am sure I can pass on an email address if you want some advice from someone who's had to live with it for a long time. The only thing that John (my friend) cannot do is soldering, everything else he'll have a fair crack at, so he knows a hell of a lot by way of workarounds etc.
The important thing to do would be to stay as active as she can and find new activities she can get involved in, as well getting in touch with any blind groups in the area who might be able to provide support. You'd be plenty surprised what you can do without sight. Sorry to hear your bad news John.
Mate that sucks. This may sound stupid but what every you do (tell her / don't tell her) just continue to do what you have done for the last 39 year and be there for her. If it was you losing your sight and she knew, what would you want? You know her best, how would she take it? Personally I'd like to know, it would knock me for six and i'd have a while of feeling sorry for myself but then you just get used to the idea and have time to prepare for the future. Either way good luck mate, we will all be here for you if you need anything (not that I could really help from the UK, but i'll keep posting difficult images in the guess the car thread to keep you busy).
You could always have the doctor tell her. Maybe a little impersonal, but they are trained to break news like this.
this is what I was thinking, maybe you could both go in and he could go through it with you both like he did with you. it might help it sink in if she hears it from the doctor and gets his recommendation. but as capn said you might want to tell her yourself and you know your wife better than we do. I think coming out straight with it would be best but Ive never had to give news like i that so my opinon is useless. trying to sugar coat things or ease someone into something like that can give false hope and in the end be worse Could I ask would her sight be completely gone or heavily impared?
She probably already has a suspicion - her eyes have been giving problems for a while, and after all she's your wife - considering you've been married so long I'm sure she's developed a sense of knowing something's up. Don't drag your feet in telling her, because she's just going to be upset with you for keeping it from her. That's all I can say, really - I don't really have much experience with blindness; I knew someone who knew they would eventually go blind due to a thinning retina but he never seemed to let it get him down. Never talked to him about how he coped with that kind of knowledge, though.
Thanks for all the replies. Sometimes life just seems to find a way to kick you in the head. I'll persevere as I always have. Too late to trade her in for a younger model since I probably wouldn't live through it.
"Had to delay the funeral 3 days. Mortician couldn't get the smile off his face" Old joke but made me smile
Thanks for giving me a heads up. I'm sorry to hear about Marilyn's problems, John. To put it mildly, losing one of your main senses sucks epically. I am also extremely annoyed (furious, actually) that the doctors told you but not (yet) her. It feels to me that they want you to do all the difficult work of breaking the bad news while it is their job to do so. After all you will not be able to answer any of the medical questions that such news will inevitably evoke in her. For instance there is the question about the degree of blindness. Macular degeneration (as you will no doubt know better than most) causes a blind spot in the fovea, the high-density delicate rod-and-cone structure at the center of the retina (and one's field of view). It is interlaced with a lot of fine blood vessels and it is the artherosclerosis of these that causes retinal degeneration and a loss of detailed vision. The cataract does not help but as you know that can be replaced by an artificial lens. So I'm not really sure what level of blindness the doctors are talking about --a total loss of vision or rather a loss of acquity that will make it very difficult for Marilyn to read or see detail, but would still allow her to walk around avoiding obstacles, reach for objects and appreciate a sunset. Again, this is why they should be the ones breaking the bad news --you cannot answer these questions for her. Moreover, by telling you but not her they put you difficult and unfair position: you know this terrible news and want to try and protect her from this for as long as you can, yet you may also feel guilty for withholding this important information from her. My impression is that your relationship is built on openness and trust and holding this information inside may feel like you are violating that. Moreover it must affect your mood and behaviour as you are effectively going through a grief reaction so there is also the anxiety that she might notice... the dynamic then becomes one of what we call in the trade the "hang yourself" tactic where she ends up second-guessing what is bothering you and in the end either she guesses right or you break under the pressure and fess up. Hardly an appropriate way for her to learn the bad news. She may be angry at you for being the bearer of bad news, and be angry at you for trying to withold it from her. Damned if you do, damned if you don't. So yes, I am rather pissed off with your doctors. But back to Marilyn. When she is told, grief reactions will be normal: shock, disbelief, denial, anger, bargaining, depression and hopefully, eventually acceptance. It will take some time for her to work through these feelings. Expect her to go back and forth, and expect her to be (sometimes irrationally) angry with you, herself, God, the doctors, the world, the universe --not necessarily in that order. Grief is in the small spaces and since you never know how blindness actually affects your daily life functioning in the most unexpected little, but significant ways until it happens to you, she will re-experience and work through these grief emotions time and again until she becomes familiar with her disability. Grief involves: 1. acknowledging the loss, 2. experiencing the loss, 3. letting go of what has been lost and 4. re-investing in something new. Again, this takes time and as you will gather, how she will fare with stage 3 and 4 will depend on what alternative ways there are for her to keep functioning in her daily life and maintain her quality of life. In that regard, another thing to consider is that impairment =! disability =! handicap. The impairment is in her vision, but how much it becomes a disability depends in part on her functional adjustment to this. How much it stops her from participating in daily life and society (handicap) depends on how much her environment adapts to her different abilities and way of functioning. As you can imagine, it is a long and complex road. Initially she will feel scared and vulnerable: expect her to lose confidence, become more clingy and dependent and lose self-esteem. She may feel anxious and depressed. She may also feel guilty for putting you and Ryan through this and feel like a burden. At this time patience and reassurance are important, as well as concrete practical ways of helping her adjust. Keep in mind that adjustment is difficult and all these reactions expectable. Eventually, they also pass. Basically, she needs to be able to preceive an alternative way of living that, although it is different and involves limitations, can also still be rewarding and offer new experiences to explore. But always acknowledge the loss. And keep in mind that the loss is very personal. You may make assumptions about what blindness will mean to her, and having lived with her for so long and knowing her better than anyone else on the planet you may be mostly right too. But you know Marilyn-who-can-see. Marilyn-who-is-blind may be a very different person, to you and to her. PM me if you want to talk.
