Jan, if Neil is asleep, I don't want to wake him... so I'm scared to call you (my mom drilled into my head that you can never call anyone after 10:00 unless there's an ER or a police station involved)... but I'm wide awake and you have my cell number. Will you please call me now?

Janis - hubby is an insulin dependent diabetic, three heart attacks, three stints, a triple bypass....just so you know I feel I can relate.

Do you have one of those training centers for the newly blind adults anywhere near you? I believe the staff there deal with adults who have had sight and lost it every day of the week. I believe your wonderful smart, intelligent husband can learn for himself, and help others learn - it is a useful needed thing that may give him purpose.

I am sorry, I do not know they why behind his loss, and perhaps it would preclude the training center. But its time for it if you can find one and if he will go.

There are two patients in your household. You have to take care of both, which means you need to get some coping help yourself, yesterday.

Hugs
s

Janis, I have no idea what to say to you, I wish I could think of something wise. Know I am thinking of you and send love and support. Gabriell

For Janis and Neil, I've been lurking here trying to get up the nerve to post. I could.nt pass this up.

First let me give you a sketch abt me. Three years ago my beloved husband of 48 years passed.Our anniversery and his birthday just passed.

Neil, for you i have a special message. I know you're losing your sight,but you beautiful man it is only your eyes. You have your mind to among other things to think of your wife. She needs your thoughts so very much. Your thoughts of her will never ever be the same as anyone elses or as precious.

You've got two loving warm arms that can comfort and love your wife as no other arms in the world and her arms are the same for you.Please, please, hug each other and know you are both needed to each other. even if you can't see, you are needed so so much.I know....I know.

You may not see but you can hear and your hearing will probably improve. The birds are singing. you can feel the breeze touching your cheek. You can hear the voice of your loved ones, the laughter of a child,...your wife. THE MOST WONDERFUL OF ALL SHE CAN HEAR YOU. What you think,what you know, what you hear,remind each other of your memories both good and bad for they are the riches of your life. Please,Please,say to each other I love you.

You got the sense of touch. you can reach out and feel so many things that are like magic. The softness of velvet,of someones hair,a pet the coolness of wood ,glass,snow, The gentleness of a touch on your shoulder,arm or hand when words will not help. Please, Please reach out and touch each other. It all counts more than anything else in the world.

I feel for both of you so very much. If one thing i've said touches a hope in you Neil, than i can be so happy. You have to be a wonderful person or you would not be so loved.I know it's so hard now but it will get better. We humans were made to adapt.

Janis, you've got a hard row to hoe but you'll make it to.Reach out to each other, thats all you can do and it will take time. When you have doubts reach out and touch him and know that you can.
Prayers and hugs
vickie

My heart goes out to you, Janis. One feels very impotent when those things happens to somebody they love.

My grandmother was blind, for as long as I can remember. She lost her sight to diabetic retinopathy. It came on insidiously and the vision went piece by piece until it was gone. I don't know how she dealt with it, overcame it, and moved on.........but she did. I'd suspect, knowing her, she went kicking and screaming, but she lived many years as a blind person and somehow it just became part of who she was. It didn't hurt she had a loving spouse, as does your husband.

My mother has lost her hearing and I also watched helpless as it progressed. I mourn for the things she once so enjoyed, like her music and the sounds of children and birds. Now she has been diagnosed with dementia and in just a matter of months has gone from a loving and happy woman to a worried creature who must constantly look for her purse, her dog, her glasses and can't even enjoy coming to the dining room for a meal because she doesn't know how to get back to them, even though they are one door away. It does suck eggs.

I always thought of myself as a steel magnolia too, but kiddo I take all the help I can get now. I suspect that all the physical accommodations will take a second seat to the ones of the mind and heart, and you will find them. Honest you will, as will he. I don't doubt you are a pretty awesome partnership.

There are many things that can be done, bought, learned, which will somewhat ease the fact of being blind. But a priceless comfort is the simple fact that you are with him.

You are pissed, and understandably so; but I bet he is more than pissed -- both furious and terrified. Even more than cultural/social expectations, males are wired to be the Protector of their mates. Damn little makes a man feel more useless than not to be able to Protect those he cares about. Not being able to see after a lifetime of vision is ego-diminishing. It's also infuriating, frustrating, - and scary- all of which can contribute to a feeling of worthlessness. I think Neil will be lucky: you are capable of facing -and making the best of- unpleasant facts. I think you are also able to express to him how much he is needed. Not just wanted, loved, cherished, but *needed*. He may not be able to see you clench your jaw or roll your eyes, but he CAN feel your tension and hear your frustration. Let him help you. Words and touch may have been important before, but those methods of communication are now your lifelines.

I also think it would be very good for both of you to contact various organizations that work with blind people. There are many adjustments to make, and they can help y'all with them. Everything from learning to never leave any item out of place, to walking without shuffling; there are easy ways and hard ways of learning, so let someone help you find the easier way.

BTW, up here, The Washington Post newspaper has a special telephone number people can call to hear the newspaper read out loud. I expect there is a similar service in your area. Neil just might enjoy hearing the sports page every day.

I think if it were me Id call the dr get his opinion.He could help.

Jan, Steel Magnolia is just a couple of words from a movie which don't mean anything when it gets right down to it. What the heck does "strong" mean anyway??? You are both in pain,for different reasons and you are both entitled to that. He is facing blindness and is going to have a gazillion reactions to that,and you are reacting to his reactions which for both of you eventually will mean acceptance.Right now it's grief,plain and simple,and trying to deny those feelings and pretend they don't exist just to be strong can only eventually do damage. From all your posts and emails iit's easy to see that you are doing every single thing you can to make Neil's life easier and adjusting your behavior accordingly. You have to start thinking of yourself or you aren't going to be any good to anyone...and in my opinion that's part of what it is to be strong. I don't know how far it is to the nearest place where there is a good hospital but talking to others who have spouses and loved ones going through the same thing could really help you gain some perspective. Who one earth would understand your feelings better than someone else who is walking in those shoes? Is there any kind of group like that withing driving distance? I am so sorry you are feeling completely frustrated and sad right now.Coming to terms with loss,regardless of the kind is total hell.

Jan, I'm up also - give me a call.

I will say here that you are an amazing woman and one of the most capable and loyal "warriors" for those you love. You have however, just met up with a terrible dragon - depression. You can't fix it honey but you can find the help that will enable both you and Neil to deal with it.

This type of reaction is predictable in Neil's situation. It happened to my stepfather after a long and terrible bout with cancer treatments. It was a dark time but they got help and some medication and slowly moved forward. It's important that you contact someone as soon as possible, and someone that Neil trusts. He was in medicine for a long time and I'm sure there's someone who he respects.

It's very, very, very difficult for someone who has always been in control and been the healer, nurturer to suddenly be in the position of losing control and a level of independence. It's a shocking revelation and a shock to the entire personality. You are forced to redefine yourself. For my entire life I was _____________________, that's gone.....now who am I? Am I nothing??

And you likewise feel helpless. There doesn't seem to be anything you can do to fix the situation or alleviate his distress. You must be very careful of the effect of these pressures on you also.

In the case of both of your well beings, you must seek help. I trust you to find the person that both you and Neil can trust. Talking is medicine too.

You're both in my thought and prayers today.

Jan and Neil, I love you both so much. The memory of seeing you two sitting next to each other and feeling you love to each other and to my family keeps me smiling. You're the sweetest people and deserve the best. I don't know why this has happened, but I'm so glad you have each other to weather this; I just don't if an ordinary couple could handle it. Jan, you don't have to handle it. You have friends who can help, let us. We're crying and hollering too. We love you and we're here.

Jan, You've gotten good advice from Marda & Suzanne. Much as we all want to, we can't control or fix everything in life. Not only does Neil need help, but you do too. There are people who can help. Just reach out. They want to help.

(((Jan and Neil)))

I'm sorry I can't offer words any more true, helpful, caring, moving or supportive than the ones given here. Just and 'ear' and a 'shoulder'.

I cant think of any words more healing than what has already been said by the rest of the group. All i can do is give hugs. (((((((Jan & Neil))))
And some for you too suzi. I know your mom is one of your best friends and it must be so painful for you right now.

My dear Jan, many kind and wise words have been written here.

If you distill them the most important ones are that you both need help from people who know how to help you through this. It seems to me that you've both been very proactive to manage Neil's blindness and how to deal with it on a day to day basis...how to help him feel in touch somehow. But there's another piece and that's the feelings.

Neil is depressed to the point of tears - he's hurting and doesn't know how to stop. You're hurting and don't know how to stop. Speak to your doctor today. Tell him/her everything and get some psychological help. You both need to talk to a professional together and most likely separately.

I can see you both in my mind's eye now sitting in the Landmark Cafe that day when you came to town. I can hear us laughing and talking as we ate lunch. Because Neil can't see doesn't make that day less precious to me, doesn't make my memories of him less real...doesn't make how much I like him less. Not being able to see doesn't make him less. Please tell him that from me. There are new good memories to be made once you're able to set your feet on your new road. It doesn't make him (or you) less to ask for and get help to find that road.

I send you both my love and my hand is in yours.

Sheila

Janis, my heart aches for you, I think Neil may be more worried about the effects of his blindness on you than for himself. That was the case when my DH became depressed with serious health problems. I had to adjust my feelings to say "we've weathered so much, we have so much to be thankful for, it's tough aging but consider the alternative". We made it a rule not to mention anything to do with doctors, pills, or illness except when absolutely necessary...when asked we say, "we're fine" and go on with other topics, pouring all our thoughts and energies into actively looking for the good things around us.

I know you and Neil have family nearby...enlist their help. Have one of Neil's sons request his father to start recording his memoirs. Maybe you both would like to take up a musical instrument? Go dancing? Get another pet. Both of you need other things to occupy your minds. You perhaps may need an antidepressant too for awhile...whatever helps you and Neil. You're fortunate as were DH and I to have family nearby and the necessary means to provide extra household help (including driving in our case) and conveniences to ease the way.

I myself have Neil's malady ...so far I still have pretty good vision in one eye. I agree that it's hard but I try to stay ahead of the curve... deciding I was going to wring every drop out of every moment left of sight was the very first step. Downsizing our house, putting emphasis on the innumerable pleasures of just plain old basics like trying new foods/restaurants and exploring new music genres, things that I can continue to enjoy later. I don't know how much time I have, but I'm not in pain (which I honestly couldn't face as so many others do daily with other illnesses).

Jan, I'm not one for group counselling or even one-on-one (bad experiences with psychiatrists when younger) but perhaps you feel differently and I know they are helpful to others. You reached out here...now call your GP and ask for a reference ... you can always cancel the appt. or not take the advice or pills...it might help just to know there's help there, just as we've tried to offer here.

God, I sound like Pollyanna and I'm really so not...when I get down I wallow in a good book or garden awhile...if all else fails make a face at yourself like Don's infamous photo and I guarantee you'll wind up feeling sheepish and laughing. It's a trick my Dad taught us kids when we got aggravating and pouty. It's an attitude adjustment we really need...even steel magnolias. josh

Lots and lots and lots of hugs to you and Neil.

Everyone else has said better anything I could say.

Jan, the Northern Southerner....

Jan, hugs to you and Neil. Get the comics and read them to him, it will give you both some thing fun to do. Laughter is healing and whatever gets you going should help.

Thank you each and every one from my heart.
I really unloaded on my friends here, didn't I?

I was at my wits end last night and I was
hurting. I needed you and you all came through for me.

I did call Michelle and we talked for awhile.
I cried on her shoulder, she listened and she made me laugh.

Thank you all again for the wise and very kind,loving words.
You'll never know how much it means to me and how it lifts
my spirits.

Neil and I are better today and I am looking into having
someone come out to the house to help him with some things.
Also, a nice young man is going to show him a program that
will allow him to still use the computer.
We are just trying to take this a day at a time and I am
also looking for a good support group.

Thank you all for listening and for picking me up off the floor.

I am happy you both are feeling better, some days (nights) are harder than others. I am always impressed how everyone on this forum is careing and supportive.
I give you what blessings that are mine to give.
Love
Joann

Jan, I'm so glad you're coping better for now. Nighttime takes everything bad and magnifies it - the deeper into the night it gets, the greater the magnification. I think that's the true meaning of the phrase "it's always darkest before the dawn." Please find someone you can call no matter what the hour. A lot of the magnifying effect comes from the feeling of "aloneness" - "I have to deal with this all by myself because I can't call anyone at 3 a.m. and wake them up with my silly problems." They're not silly, and the need is no less real at 3 a.m. than at 3 p.m.

On another note, has anyone made you and Neil aware of NetLibrary yet? It's a site from which you can download e-audiobooks for free. It's just like borrowing them from a library. Included in the download are the user permission rights, which expire at the end of 21 days. But you don't have to worry about remembering to take anything back to the library - it "returns" itself!

Hugs and prayers and good karma and armloads of sunflowers,
Kim

Here is a link that might be useful: NetLibrary Access FAQ