Help for Sighted Spouses

I am a sighted spouse and would like to connect with others who have a blind partner. Sometimes I feel overwhelmed with all the things I need to do and don't have much energy to do things for myself.

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Re: Help for Sighted Spouses



Hello all,
I've been reading some of your posts and I have to say some are depressing. I'm 26 years old and I met my boyfriend online. We have been together six months, live over 500 miles apart, and like you, I have to say I'm honestly in love with him. He has been blind since birth, which means he has never seen anything. I guess the advantage to that is, he can never fully wish for sight to come back since he's never had it. I've often wondered similar questions in the beginning of our relationship as you all have, but every single one has been answered. You see\, my boyfriend may be blind, but who he is refuses to let that hold him back from living as normal a life as possible. That includes a high paying job, living on his own, grocery shopping for himself, traveling by himself etc. He is completely independent, even moreso than the last man I was with, who sat around the house, refused to work to support his family, and wouldn't lift a finger to do something for his life. The Kicker was, my ex wasn't blind and no disabilities whatsoever. I guess in reality it all depends on the person. I understand going from being a sighted person to blind is probably very devastating and it is probably more depressing than I can fathom. But shall life really be given up on because of it? There are options, help, to get a person back out there to function as much as they can....they just need to try. First, they need to want it.

My boyfriend and I talk about marriage alot lately. and to be honest, I have seen his apartment, I have seen how he is in his world, and I have no reservations that married life wouldnt work. Now, will it be easy? No way! Im not that naive. I know he'd take longer to get home after work because he can't drive and so would take the subway or a bus. I know he wouldn't be able to drive me home from the hospital with our first child, or go pick them up from daycare when their sick unless he used an uber or taxi. I know he may not be able to be the most amazing chef in the world and I would never have to cook again. But what I do know, is he would still try. He would still do the laundry, sweep, get on the floor with our child to play, cook what he can, go to work to help provide, and continue in his goal in making the world a more accessible place for those who are visually impaired. Is this the perfect situation? Not by many standards. But it's worth it. If someone is that caring, and is driven to live life purposefully, then it doesn't matter if they are blind or not. It can work and it can be wonderful. Sometimes they need encouragement. But hey, so do the rest of us who can still see the sun rise on a brand new day.


Re: Help for Sighted Spouses



Toryg24,
This isn't going to be very helpful as I'm in the same situation as you, but I want you know know you aren't alone in those feelings. I'm 18 and have been dating my boyfriend, who is losing his sight to RP, for over 2 years. I love him very much, he is the world to me but as we're progressing in our relationship I'm worried about our future. I'm a naturally outgoing person, I love to hike, bike, and travel. My family goes dirt-biking in the desert, boating, skiing, things like that, and I want my children to grow up with those same experiences, some of which he won't be able to share. I'm also very concerned about becoming a caregiver, I don't know if I can handle the stress of being the "doer" for the rest of my life. I too would like some advice, I love him so much, I don't want to break up and lose him but I also don't want to end up stuck and unhappy.


Re: Help for Sighted Spouses



This may seem ridiculous since many of you have had years of real world struggles with your spouses, but here it is anyway. I'm 18, I met my boyfriend when we were sixteen from being pen pals almost seven months after his rare form of glaucoma eliminated most of his vision. We have been dating for over a year and a half and I am in love with him. He's an amazing person and wants to be a writer and reads constantly. We are very serious and talk frequently about marriage and are really just waiting to share the same zip code and finish college. Since we are long distance, over the course of our relationship we have only been together constantly for a few weeks at a time when we have had time off from school. But I worry that I'm not the right girl for him. I'm naturally anxious and my head is always running in a hundred different directions so taking care of myself is enough of a struggle. Everything couldn't be more perfect when we are home or it's just the two of us but I have a hard time having fun because I get so stressed out at the thought of being responsible for him when we go out. And I feel horrible because his worst fear is that he will be a burden, but when we are out I feel like I'm with a child and its stressful and exhausting. At some points with going out to dinner or any meal and makes a mess of everything, I'm embarrassed. I feels I shallow and disgusted with myself because he didn't choose this and he can't change his eyes and otherwise he's perfect. Maybe it's that I haven't had enough practice with guiding him, but I'm terrified of how I will handle his dependence on me as we approach adulthood. With the addition of bills and and a house and possibly kids I don't know if I can or want to do that all by myself. I love him and I guess as like many of you its just a question of how much I'm willing to push through the hard times to get to the extraordinary ones. All I keep reading is how hard it is and I can't fathom the idea of marrying him and both of us being unhappy and fighting. He already isn't going to school because he missed application deadlines and hasn't gotten a job. It's hard for him and he doesn't want to be this way, but I got him a typewriter for his birthday and he hasn't been writing. He sleeps a lot. I don't know if I'm strong enough to take care of him and be the man in our relationship. Fights have already started. I don't want to lose him from my own stupidity and incompetence, but I'd give him up if all I am going to grace his life with is more misery. Please let me know what your thoughts are.


Re: Help for Sighted Spouses



Hello cg, Life can really get tough sometimes. It is perfectly ok to take time out for yourself. If you don't, you risk burn-out and that helps no one. Don't feel guilty because you aren't super woman and can't leap tall buildings in a single bound. Think of what you might do for a friend experiencing what you are dealing with and how you might help her. Let others know how they can help you. Seek out respite care for your spouse who can come to your home and give you time to do a bit of R.R. Or you might find out if their is an adult daycare program in your area. These programs provide supervision, activities and a safe place your loved one can be cared for while you are at work or just taking time to get some things done. you are dealing with a lot more than just vision loss in your partner and you shouldn't feel embarrased for asking for help. If you don't take care of you, then you won't be able to care for anyone else. Hugs,


Re: Help for Sighted Spouses



Hello-Wow! You are going through a very challenging time and you have taken an important step to reach out for help. Of course you are feeling mad, sad, tired and a myriad of other powerful emotions I am sure. And you have a right to feel these things! This is all so new and fresh for you and your husband and you are in the throes of the grieving process. His illness and and blindness are not just happening to him but to you as well and you both will have to work through it.

I am not a caregiving spouse, but I am a spouse who is visually impaired. Recently my mother had a catastrophic brain hemorrhage from which it has taken 4 years to recover. She will never be the same, but has made remarkable strides through therapies and time. During that time, our family searched for resources and services to help care for her. You are so right in that if you do not get some respite and relief, you will burn out.It is important that you find ways to take care of yourself. You will need physical support and well as emotional support to get through this. I would suggest looking into caregiving classes or support groups in your area. Perhaps the hospital social worker may have some resources for you. Is your husband receiving therapies to help him gain skills back? Does your insurance policy include long term care? We were able to have in-home caregivers for my mom, as well as in-home physical, occupational, and speech therapy. Another place to look for help is with your local senior services center. They may be able to connect you to adult daycare or respite care services. Perhaps with time and therapy, your husband will learn some activities of daily living such as feeding, dressing,etc and become more independent. We have some of that information at visionaware.org/everydayliving. And another important resource to look into would be the agency that serves the blind and visually impaired in your community/state. They can provide many services including vision rehabilitation and counseling.Often there are support groups offered through these agencies as well. Here is a link to the VisionAware directory to find services in your state or local area: visionaware.org/directory. It is important to build a support system of people and resources. You do not have to do it all and alone. With time and training, you both will find your way to a "new normal" and acceptance of this new life. It takes time, patience, and recruiting help so be kind to yourself. Wishing you strength and courage during this transition, If you would like to talk further, you can contact me at ademmitt@afb.net


Re: Help for Sighted Spouses



My husband has lost his sight in the last month due to a cancerous brain tumor. He is 56 and we have been together 21 years. When I read other comments, I can certainly relate. I have become the sole breadwinner and "doer of everything" inside and out. I cannot leave him alone as after his 5 th brain surgery he has some cognitive and short term memory issues and gets confused often. I have moved into the mother role as he depends on me for everything all day every day. My step kids are zero help. I feel so bad for him and want to help, but worry if I should make him do more for himself. He doesn't get up and move unless I make him. Eating out is embarrassing for him as he can't navigate the plate yet. I feel guilty as I really want a day to myself, but have no one to watch him all day. He and I have both lost a great deal. At this rate I will burn out quickly if I don't find a balance. It is scary to know you are "it" and responsible for everything!! No one signs up for Cancer or Blindness. My life will never be the same and that makes me mad and sad. Does it get easier??


Re: Help for Sighted Spouses



hello-this situation is very concerning to me, as someone who is losing my own vision and someone who works with others who have lost vision. IT IS CRITICAL that your fiance' get to an eye doctor ASAP if he wants to have a chance to preserve his vision! Glaucoma is a serious condition that can be very aggressive. Without treatment, it is almost guaranteed he will go blind...HOWEVER, there are treatments that CAN preserve his vision. That is the plain truth of it though it sounds harsh... once the damage is done to the optic nerve from the high pressure that builds up in the eye, there is no repairing it or getting back vision. At this point, it is all about saving whatever vision you can....and it requires seeing an eye doctor who knows glaucoma to do so. And let me say, from one who has alittle vision left-it makes a HUGE difference in the way I function and every shred of vision I have left is absolutely precious to me!!!So here is the bottom line: if he does not go to the eye doctor, he will go blind. If he goes to the eye doctor, he has a chance to preserve some vision.
IT CANNOT BE IGNORED without terrible consequences....now...what are the reasons he states for not going? if it is a financial hardship to go to the eye doctor, there are organizations that are in place to help. You could check with your local Lions Club, Lions Lighthouse, Prevent Blindness (in your state) and Glaucoma Service Foundation to Prevent Blindness. There is financial help out there. Glaucoma is one of the eye conditions which is treatable; many are not. It would be a tragedy to just not get the treatment and let yourself go blind....
.


Fiancé is going blind



My fiancé is going blind mainly in his right eye. We are both 25. He was born with Glocoma. He's being doing fine seeing up until recently. I think his eye sight is getting worse but he refuses to go to the doctor. We have 5 children and naturally he puts his needs last. But I'm afraid that if he keeps living like this it will be too late. If he doesn't have his contacts on he can only see blurry shapes. If he wears them too long he sees dark shadows. And if he's wearing contacts and the sun is setting he can barely see at all Bc of the light transitions. I know he needs help before it's too late. But he refuses. Of course I continue to urge him to seek help but how much longer do I have? I am aware that all cases are different but is anyone out there who can tell me their experience and how long it took for your spouse to lose sight completely.


Re: Help for Sighted Spouses



Hi, you may also want to check out the telesupport groups that MD Support offers. Here is the link to the information: http://www.mdsupport.org/support/telesupport
Also, here is the link to the Connecticut Council of the Blind web page: http://acb.org/node/76. The link has contact information. Their president says that she will be glad to talk to you about support groups in CT as well.
Also she suggests that you may want to talk to the National Federation of the Blind in CT at http://www.nfbct.org/ and an Association of Blinded Veterans, both of which may be able to help. She says that The Bureau of Education and Services for the Blind also has a listing of support groups and there is no other resource in CT with this information. There is also no other resource in CT that specifically deals with intensive direct services to people experiencing significant vision loss. Regarding Lions clubs, there are three districts in CT, and each district has its own low vision program, generally dealing with people who can be helped to use their vision more effectively through the use of simple devices such as magnifiers, talking watches, etc.

Thanks for contacting VisionAware.


Re: Help for Sighted Spouses



Hello,
I am sorry about your frustration in securing appropriate vision rehabilitation services for your husband.

It is oftentimes necessary to keep pursuing options even after a disappointing start. Hopefully, both you and your husband will locate a source of assistance that provides what you are seeking. Keeping open communications is critical in avaiding misunderstandings.

It is important to define what you both need and set realistic goals. Explain those goals to the caseworker or other service provider whether they be finding employment, obtaining low vision aids, improving mobility skills, having access to adaptive technology, etc.

If you are denied services or a benefit, we suggest a follow up appointment to meet with someone who can fully explain your options to you.

If you have access to the internet, I suggest you check out the following website that lists a broad range of services in your area –

http://www.ct.gov/besb/cwp/view.asp?a=2848&q=33147...

Many support groups welcome family members and can give you the opportunity to hear firsthand how others are dealing with low vision and how they have been able to negotiate their way through the system, step-by-step.

Please keep in touch.
Don Golembiewski, MA, CVRT


Re: Help for Sighted Spouses



Hello everyone
I am a sighted spouse; my husband is very low vision. Before I get into any details can anyone recommend any local support/resource centers in CT? We are dealing with BESB at this point only and need more suggestions as they have not been able to meet our needs. Any help would be appreciated. Thanks!


Re: Help for Sighted Spouses



@swtblond85- My husband and I moved out of PA just a couple years ago. Try contacting Blind and Visual Services (BVS) http://www.portal.state.pa.us/portal/server.pt/com... The people we've worked with there are truly lovely. Due to confidentiality they can't tell you others directly, but they might know of a group in the area.

Hello! I think a group would be fun. I'm 25 and my husband (26) has RP- a very quickly progressing one too. He has a very determined, strong, but humorous approach to dealing with it. I'm thankful that he's managed to use it to bring us closer together rather than farther apart.

The thing I'm curious about is kids. I know we'll figure it out a lot along the way, but tips would be great. He'd handle them fine alone at home or with me out in public, but what if he wants to take them to the park or walk down-town alone? Do we have to get a child leash? (I personally don't like those at all and would rather not- any success with just explaining to the child about alwaysalways holding hands?)


Re: Help for Sighted Spouses



Hi, I am new to this site... I just found it today googling support groups for visually impaired spouses. I am a 27 yr old female with a husband who has been legally blind all his life...We have 2 children and I am just looking to connect with someone out there who I can share stories with or get some support... We know a few other visually impaired through an NFB chapter that just started up in our area, but not many. I am just feeling overwhelmed lately with caring for 2 kids and trying to be there for my husband. We live in Pennsylvania about an hour from Philly. If anyone knows of a support group in our area or someone from anywhere that would be willing to share stories through email that would be so appreciated. Thanks!
Abby


Re: Help for Sighted Spouses



Hello,

Another resource that may be worth your time to contact in the Bergman Institute, which is located within the Chicago Lighthouse. The Bergman Institute focus on adjusting to vision loss, and is a counseling center offering individual, family, and group support.
Their contact information is:
David Rakofsky, Psy.D., Associate Director Psychological Services
Phone: (312) 447-3235
E-mail:
david.rakofsky@chicagolighthouse.org

As stated in the post above, finding the right group and type of support takes time. However, it is well worth the time.

Continue to ask questions,

Beth

Beth Gustin MA, NCC, LPC
Center for People With Disabilities--Program Manager


Re: Help for Sighted Spouses



Hello,
My name is Don Golembiewski and I moderate some discussions on this site and formerly taught courses and conducted workshops on support groups for people with vision loss. You are on the right track for seeking a support group. And both of you can benefit from attending and learning from others how they are dealing with vision loss, family challenges and possible job changes.

Because groups change meeting locations, times and leaders, I suggest you contact the listing below to get current information about local services and a support group near where you live.

Illinois Department of Rehabilitation Services: Bureau of Blind Services & Business Enterprise Program for the Blind
809 Commercial Avenue
Springfield, IL 62703
(217) 785-3887 (Local)
(217) 524-1235 (Fax)
(312) 633-4088 (TDD/TTY)
DHS.ORS@illinois.gov
http://www.dhs.state.il.us/page.aspx?item=32305

It is important to locate a group that will address your specific concerns and meet when you are both available. Some groups meet midweek during the day so employed people may not find it easy to attend. Others may be mainly social or emphasize a certain philosophical approach to dealing with vision loss. Just as every person is different, every group is as well.

Some groups do exist that are open primarily to people and their families who have a specific visual diagnosis but most are open to any and all people with vision loss due to any condition. Some research time is needed to find the right fit. When no group is available with which you are comfortable, the next option is to start your own group. The Hadley School for the Blind is a distance education school that offers two free courses on participating in or establishing a self-help group. They are at 1-800-323-4238.

Keep in touch and ask lots of questions.
Don


Re: Help for Sighted Spouses



Hi Everyone,
Just wondering if anyone on here knows of support groups in Illinois. My husband has RP, and while he can still see relatively well, he can no longer drive, and he is working on possibly changing jobs, because his work is so far away. We have 3 school aged kids who are very involved in things and require constant transportation. I'm just looking for someone to share stories, concerns, etc. with. I know that he'll get worse, and I want to help him deal with his emotions the best way I can.


Re: Help for Sighted Spouses



Morrow,
This certainly sounds off the mark. I suggest your spouse schedule a meeting to calmly and politely review all pertinent facts. Bring along a copy of the part of ADA that specifically addresses "reasonable accommodations" in the workplace and request, again politely, if and how everyone's needs can be met.
The personnel office or "Employee Assistance Program" representative would be my next stop if you are still not satisfied.
Please get back to this discussion board with your results as others will likely be interested.
The best to you.


Re: Help for Sighted Spouses




The only help any sighted spouse has ever needed is to have their rights protected. Imagine the indignation if my blind spouse was told that he had to assist my employer to buy me a laptop computer for work use only. Sighted employees at this particular agency are not being asked to purchase their own computers. Whatever happened to the ADA WHICH CLEARLY STATES that the employeer is to provide the tools needed for a visually impaired person to do their job. To Linda Lou: I am very sorry to hear that your family's only solution is to stay unemployed. To Artis: we are not seeking assistance from a public benefits provider. My spouse is an EMPLOYEE (Social Worker) not a CLIENT. If we are "required" to purchase the equipment then it belongs to us or did the definition of "ownership" just change overnight. This policy of requiring the blind to "purchase" equipment for professional use only when sighted employees are not being required to do so IS against the law.


Re: Help for Sighted Spouses



Mary,
I suggest a couple of approaches. First, whenever anyone with a disability runs into a roadblock from a public benefit provider, it is time to ask for assistance or clarification from someone further up the chain of command. Always be polite, of course. Next, locate the nearest support group and try to engage yourselves in it. If sighted partners are not welcomed (a rarity, in my experience), suggest a separate get together of sighted partners where you can share your concerns. I have seen some great examples of support happen when partners are given the opportunity to express themselves in their own space. Some tears also happen so be ready. Some larger support groups have formal or informal sub-groups of family or friends. Take the initiative and maybe you can get something going in your area.


Re: Help for Sighted Spouses



Hi Morrow, so sorry to hear of the control issues you are going through with those that want to "help" your husband. My husband is not working so we tend to stay under the radar and he likes it that way. I hope there is someone who can help and yes YOUR finances should be yours, but unfortunately when assistance is needed they want to deem whether your husband is eligible. So blind is not enough. And most support for the sighted of the blind person is non-existent, another sad part of a horrible situation. I wish I had an answer, keep searching sites and see if you can get someone who can do something to listen.


Re: Help for Sighted Spouses



LET'S GET A REAL group started, shall we? Anyone interested? Please write or call Mary Morrow:

mmorrowfarrell@aol.com

215-876-5022


Re: Help for Sighted Spouses



I first wrote here in 2009. Since that time things have not improved. My hubby, who returned to the work force in 2008 after nearly a 7 year absence since his accident that eventually resulted in loss of sight, was recently told that we MUST pay for his computer which he will use for work only. I thoroughly resent being told by his OVR counselor that they now run my family budget and that ADA technology laws do not apply any longer. My husband was told that I have no say in my family's financial matters. This happened 5 years ago also when I was TOLD that my husband would leave our family home for a whole YEAR to take blindness mobility training out of town to PROVE his independence. The brainwashing and forced isolation nearly cost us our marriage. And it definitely cost us undue emotional trauma. There ought to be a LAW against such cruel treatment. Isn't the blindness suffering enough without the added pain which simply isn't necessary. BLINDNESS is a family affair!


Re: Help for Sighted Spouses



I have been looking on the different sites for help living with someone that is blind. And I found the site Help for Sighted Spouses and I read your post about your husband having strokes in his nerves of eyes. My husband has been having strokes in both eyes for about 27 years and this February 14 he lost all vision. He has AION. For the first couple of weeks he just laid on the couch. Now he has been getting training on how to walk with a cane, started on line classes , he has the talking book and dvd that talk to him. He is also getting ready to go to school for the blind. He has started to learn the abc in braille. I am having alot of problems with him being totally blind. I feel like times he acts like I am his teacher. I have no problem helping him. But some days I would like to be just husband and wife. We have been married for 31 years. He does not like to go places like we used to go. How do you get your husband to go places? When I go to work he does do housework (wash laundry, run sweeper, dust, cook, he even does the push mower some times he is in the neighbors yard but he finds his way back)One instructor he has says I could take up to 2 years for us to adjust.. Before when he had a little vision I did not worry about him getting hurt as I do now.
I started on Sunday nights marking on the calander for the coming week what we need to get done so we can have some time not working all the time on studying abc or doining homework so we can have some time when the weekends comes around he just wants to keep studying which then leads into a fight. I explain to him how to do something or what the letter looks like and he will repeat himself two or three more times. I do not know what to do if you have any suggestions I would love to have some help.


Re:Help for Sighted Spouses



I would like to start a support group for sighted spouses in my area, as we have none.
We have been married for 25yrs. and the last three years as been overwhelming. I am not sure how long I can continue with my husbands suppressed feelings and or anger outbursts.
In my perception our biggest challenged is communicating on the most basic tasks.


Re:Help for Sighted Spouses



Hello to all spuses,

I have read through several of the replies here. I want to tell you that you are doing the right thing by embracing the blindness, and that there are resources for you and your loved ones.
For those who want to find support for their blind loved ones, I have a phone number.
Call the daily connection at 1231-732-7141.
Most of the callers are blind people, many of whom lost their sight later in life.
I would be happy to offer you support in any way I can. They may depend on you for different things, but they can still be contributing members of society and households. They just happen to be blind.

You are all free to call in from 6:00-10:00 PM eastern time this evening. I am in room three. You can write to me here if you have questions or want support.


With respect and sympathy,
Liz


Re:Help for Sighted Spouses



I was searching the web for information specifically related to my situation and came across the forum. I am very glad to see that others have some of the same issues that I do. I met my boyfriend 9 years ago. When I met him he had light perception but, could still not see me. We have since had three children all of which, he has never seen. I have struggled with the personal feelings guilt, frustration, being overwhelmed especially raising three children. It took a lot of personal ups and downs for both of us to get to a point where we know how to manage things within our household. There are still daily struggles that I deal with emotionally. There are days when I just want to send him to the store to get something I forgot or have him help the kids with their homework. He tries as much as he can and he does a lot of things around the house. Most people can’t believe it when I tell them everything he does such as changing brake pads on a car. Losing his sight at 26 was difficult for him but, he still remembers a lot of things from being sighted. I forgot to mention that he lost his eyesight after having an allergic reaction to Motrin he was diagnosed with Stevens Johnson Syndrome. I have put off having a wedding for a lot of reasons but, I have come to realize that if we can weather any storm together and after 9 years we have proved that.


Re:Help for Sighted Spouses



My boyfriend lost his sight due to a work accident a year ago. Vision was lost in one eye within a couple of months from his fall (severe head injury/drowning); nearly all vision was lost in the other eye a couple months later. He has no peripheral vision. Both retinas detached and surgery left scars in the eye with very limited vision. Because he is now legally blind, he cannot drive, work, and cannot read. He has a reader, but we are having difficulties figuring out how to work these 'new' technologies, as well. I relocated from out of state to be with him, as he would otherwise have to be placed into a home of some kind. We love each other, but I feel overwhelmed with how dependent he is on me for much of everything. He is resistant to getting counseling, so far, doesn't want to get a cane to help him walk (I have to hold his hand/arm and/or verbally tell him to step up over curbs or the cement blocks at parking lots, etc.). He is frustrated by his limitations, and gets down and moody about his inability to do anything he used to enjoy (such as reading on the web, doing 'handyman' work, driving,and entertaining himself. I feel frustrated AND guilty when I feel the need to have my 'space' or some independence and time to do anything on my own. I wish there was some place for us to go to a group to help him learn how to adjust and learn how to do some things he used to enjoy, but just in a new way. I don't even know where to begin to look, especially hard since I am new to the area.


Re:Help for Sighted Spouses



Good morning everyone, my name is Diana Cruz and I am a Caregiver Services Case Manager at VISIONS Services for the Blind in New York City. I wanted to reach out to many of the caregivers on this forum to let you know their are resources available to you. One such website with good resources is http://www.nyc.gov/html/caregiver/
At VISIONS we currently have a Caregiver Program geared at meeting the needs of caregivers caring for a loved one aged 60 and over that is blind or visually impaired. We also serve grandparents 55 and older who are visually impaired caring for their grand children under 18 or non-visually impaired grandparents caring for a grandchild with a visual impairment under 18.
One of the main services that we provide is one on one counseling services as well as a monthly support group in Manhattan, our support group allows our caregivers to get get together in a comfortable and nurturing environment to open up and express their feelings without any judgement. If you have any questions or are not sure if you meet the criteria to join our program please feel free to give me a call at (212) 625-1616 X 149 or email me at dcruz@visionsvcb.org
for more information. If we are unable to assist you we will try to connect you with additional any community resources that may better serve your needs.


Re:Help for Sighted Spouses



I live in NE Ohio and my 45 yr old active husband went blind. He worked in an ER and this news was devastating. I would love to find a support group for spouses.


Re:Help for Sighted Spouses



I would love to talking to you and help you any way that I can even if you just need someone to listen. I am also sure that my husband would be happy to talk to your husband if he is interested. We met a man from the lions club that was also blind and he talk to my husband and wow did it make a difference. It makes them realize they are not alone. Please feel free to contact me anytime...thomason85@comcast.net


Re:Help for Sighted Spouses



Everyday is still a uphill battle and we still have a lot to learn. Somedays I still cry but then I remember that we used to have a lot of bad days and some good. But now we have more good days then bad. He used to be my rock and now I am his and somedays I dont want to be the rock and thats ok cuz I realize even thou he is blind he is still my Rob and he is here for me. Its just that he needs a little more from me then I do from him
So we will continue to learn and do the best we can everyday.


Re:Help for Sighted Spouses



I started surfing the web and I realized that the only thing a blindman cannot do is drive. I started making him do things for himself. Anything that he asked me to do for him repeatedly I figured out a way for him to do it himself. I went to a wonderful website call maxiaids.com. From there I purchased him a talking watch since he was constantly asking what time it was. I purchased braille stick on bumps. I marked the washer,dryer,dishwasher, stove and microwave. I bought a color identifier so he could sort laundry. He can now cook and do laundry which is something he did not even do before. I constantly encouraged him to do things. He began to realize that he could do things on his own. He has fixed the hot water tank, snow blower and dryer. He is absolutely amazing....


Re:Help for Sighted Spouses



My husband is now 45. In the beginning we were just like you and your husband. My husband cried all the time. And I would silently cry without him knowing. We had a wonderful life how could everything have gotten so bad. We had to file bankruptcy and lost our home. We were always so careful with are finances but we never expected disaster. How could this have happened to us. I thought our lives were over. I was miserable and depressed and I had to work through it all just to keep a roof over our heads. It was absolutely miserable, I cried all the time and so did he. I dont know how I made it through work each day. And then one day I decided that for his sake and mine we had to embrace his blindness cause if we continued to fight it we would surely lose.


Re:Help for Sighted Spouses



Jean, I totally understand how you feel. On December 30th 2009 my husband lost his vision to a rare form of mono. In 1 in a 100 million people the mono by passes the blood brain barrier and goes to the brain. He also contracted mennigitis, he was so ill he had a stroke and then developed a blood clot. They never expected him to live. He did however have a complete recovery accept for his vision. He has 100 percent vision loss. He has no light perception at all. He has severe optical nerve damage it is permenant.

Prior to my husbands illness, he was a tool and die maker leader. He worked approx. 50-70 hours per week. And when he was not working he was hunting with our three sons. My husband lived to hunt and explore nature.


Re:Help for Sighted Spouses



I am married to a newly blind spouse. Nine months ago my husband lost his vision due to Acute Optic Neuritis, causing nerve damage and complete, permanent blindness.
My spouse was a full time employee in Washington, DC, worked 6 days a week and traveled around the country for the U.S. Government/State Dept. Now he sits at home
listens to audio tapes and CDs of music. He has lost his job, his future, his hobbies, sports, goals and any hopes or dreams he ever had. We are devastated and fight and cry most of the time. We lost our relationship, our marriage and our partnership. He is a stranger to me. He lives in the non-sighted world and I still live where we always did, the sighted world. I am very depressed, sad and at a loss how to help him. He refuses a cane, braille, or computer assistance. He holds on to me as we walk around the house. He says he wants to hide, he says he has been pulled out of life. Well so have I and I can still see so what do I do? I live a life half in the living and half in the dead. He refuses all help from the Blind Asso. and Mobility Specialists. I am lonely in this non-functioning marriage and wish I cold leave an go to live with my brother. I am a care giver 24/7 to a newly blind person as well as the person who keeps our life on track, bills paid and works free-lance. I am scared, tired, lost my marriage partner and ready to walk away. What do I do? Help me please.
J


Re:Help for Sighted Spouses



I am married to a newly blind spouse. Nine months ago my husband lost his vision due to Acute Optic Neuritis, causing nerve damage and complete, permanent blindness.
My spouse was a full time employee in Washington, DC, worked 6 days a week and traveled around the country for the U.S. Government/State Dept. Now he sits at home
listens to audio tapes and CDs of music. He has lost his job, his future, his hobbies, sports, goals and any hopes or dreams he ever had. We are devastated and fight and cry most of the time. We lost our relationship, our marriage and our partnership. He is a stranger to me. He lives in the non-sighted world and I still live where we always did, the sighted world. I am very depressed, sad and at a loss how to help him. He refuses a cane, braille, or computer assistance. He holds on to me as we walk around the house. He says he wants to hide, he says he has been pulled out of life. Well so have I and I can still see so what do I do? I live a life half in the living and half in the dead. He refuses all help from the Blind Asso. and Mobility Specialists. I am lonely in this non-functioning marriage and wish I cold leave an go to live with my brother. I am a care giver 24/7 to a newly blind person as well as the person who keeps our life on track, bills paid and works free-lance. I am scared, tired, lost my marriage partner and ready to walk away. What do I do? Help me please.
J


Re:Help for Sighted Spouses



Wow, The stories above are so familiar that I found myself reading them twice looking for clues to see if they were posted by my wife. I'm 33 she is 28 I've been Legally blind since birth, We were married four years ago and pretty much since the words I do were said my vision took a dramatic turn for the worst, and for the first time I had to admit that I was blind and needed to do something about it. It was a slow loss of independence and a quick plunge into depression and despair. Finally about a year ago I completely crashed and burned, and I don't know how she managed to stay here. Some how, and I wish I new how, I got off the couch and started to stand on my own two feet again. Loosing independence is, I would imagine, particularly hard for men. Besides the other feelings of inadequacy and helplessness I felt guilty and embarrassed. All I wanted was to be able to take care of my wonderful wife and begin a family with her, and I felt guilty and ashamed that I couldn't. It was easier to hide on the couch and be angry and depressed then admit I was helpless. I didn't have the strength to say I needed help. Finally I can't begin to presume to know how your spouses are handling there own loss or how to help them find the strength to help you with yours, but your suffering is real too. What seemed to work for us was to know that we would have to make life changes in order to deal with these problems. One we needed to move to a location with better public transportation, this would allow me to do things like shop, paybills, get to work on my own, and take some of the burden off of her. Two I needed to go back to work even if it was a job I hated, because getting out and working was way better then sitting at home drowning in my own thoughts. It isn't easy but non of this would be possible if I didn't get over my fear of the cane and stopped trying to hide my vision losse. This is still new and I'm scared I might relaps, but I know she will be there to be understanding, when I'm to rapped up in my own struggles to notice hers, and she'll be there to kick me when I need that too. Your spouses might believe that they can't do things for themselves, but they can and after some practice it isn't even hard. It just takes a realization that doing things the sighted way is over, and its time to learn how to do them the blind way. unfortunately this may take more time and requare some rock bottom crashes its all just part of the journey.
p.s. when I read post of blind people coming to terms and moving on I didn't believe them, I'm so glad I was wrong.
cdevens@optonline.net if I can do anything.


Re:Help for Sighted Spouses - BETTYANN



I am writing because of the post from BETTYANN of last year. My husband has lost his vision in both eyes from non arthitic ischemic optic neuropathy - a stroke of the optic nerve. What happens is that at night there is not enough blood pressure to keep blood to the optic nerve so it dies. NAION is not as common as ION but they are similar. Depending on the doctor, only 10% to 20% of people who lose vision in one eye from NAION will lose vision in the second eye. So aren't we special!
My husband is like yours in that he also doesn't want to participate in any of the activities organized by the social worker for blind people. He has a computer with voice over and an iphone that talks and still expects me to read to him.
We don't really argue the way some of the posts indicate. And I think we are making progress. It has been six months since he went blind in the second eye.
I have a blog at blindspouse.blogspot.com. Feel free to contact me there.


Re:Help for Sighted Spouses



Hi everyone. I am so glad to have come across this page! It's unfortunate we don't have local resources and groups BUT we do have the internet.

I've been married 11 years and my husband has RP. I knew he had the disease when we got married but had no idea what came with it.

I just created a blog where we can connect, share and support each other anonymously (or not) in a more autonomous setting. The site will also allow us to respond to individual messages :)

http://sgsplb.posterous.com/

~Sasha


Re:Help for Sighted Spouses



Hello,
A friend of mine from AFB was moved by the anguish that some of you wrote about, and suggested that I read some of the posts to this website and post a response. I provide counseling to individuals with visual impairments, and sometimes their spouses, through our state vocational rehabilitation agency. I also have family members who are visually impaired. This is such a tough adjustment to make, for the visually-impaired individual and for his or her family. There is a grieving period for everyone involved, grieving the loss of the way life once was – for the individual, the marriage/relationship, and the family. Losing vision can affect every domain of one’s life – jobs, finances, relationships with friends and family, roles within the family, independence, spirituality, self-esteem, hobbies, identity, etc. This grieving involves going through lots of different emotions. All of these emotions are completely normal. The grieving takes time, and it is a very individual process, with no right or wrong way to do it. Because it is such an individual process, what one person wants/needs is sometimes different than what another person in the family wants/needs; for example, one family member may want to discuss it and another family member may want to isolate. As the visually impaired individual and his or her family adjust to a visual impairment, they have to find their “new normal”. Because none of us lives in a vacuum, this adjustment process has to be done in the course of our daily lives – there are still mortgages to be paid, babies being born, homework to help with, aging parents to be cared for, and laundry to do – which makes the adjustment process even more overwhelming. Often people feel alone, and none of us likes to feel like we are alone in our struggle. Support groups, whether formal or informal (like this website, or people exchanging phone numbers/ email addresses), can be helpful. Counseling can also be helpful. The important thing is to realize that you are not alone, what you are feeling is likely very normal, and there is help out there. Another thing I would like to add is that adjustment to a visual impairment is a process and a journey with lots of ups and downs along the way. It is about accepting limitations (the grieving) and focusing on strengths to learn new skills (finding the “new normal”). Your state vocational rehabilitation agency can assist your loved one with learning to use a cane, learning Braille, improving mobility, and obtaining and learning to use adaptive technology. Through these skills, your loved one can increase independence and confidence, and decrease anxiety and depression. When your loved one first lost vision, you both likely thought of him or her as “blind”. Over time, you and your loved one will come to think of him or her as the whole, beautiful person he or she has always been, with many attributes, interests, hobbies, skills, vocations, roles, and abilities, who happens to be blind. In other words, over time as you find the “new normal”, the visual impairment fades and becomes one of many ways to describe him or her, rather than the main attribute. I hope this information is helpful. Good luck with the journey, and know that others are walking along beside you and extending their hand to help you.


Re:Help for Sighted Spouses



Dear RSRSRS,

It is good you are thinking about these things before you get more serious in your relationship. A blind spouse is a lot of work even if they are high functioning. And you have to consider your outside activities and interests will change too. My husband is blind and we used to bowl, play pool, go to movies, etc, but those things do not happen anymore. I am hoping he will find his way as time goes by, but he is still struggling.

I think it would be good after you have thought things through to talk with her, hopefully she will calm your fears and you will see what she means to you.

Living in resentment of what you could of had, is no way to live. May your choice be made out of honesty. You are not a bad person if you choose not to marry her.

It is good you can talk about this. Hope you come to a solution soon, for both of your sakes.

Linda


Re:Help for Sighted Spouses



I am very excited to find this site, actually my sister-in-law found it for me! I am in Georgia also! My husband and I have been married for 31 years, have 3 children, and 5 grandchildren! He has RP, and has completely lost his sight in the last 11 years! It has been a 31 year struggle for me, and with less and less sight the more of a struggle! Very stubborn, and proud! Sometimes he drives me crazy! Gets made if I help him, and gets mad if I don't, whats a girl to do?! He is very independant, he has figured out how to do alot of things his self! I'm proud, but flustrated! Had no one to vent to, till now! Thank you so much!!!


Re:Help for Sighted Spouses



I am so happy to find this site, and even happier to see that it is relatively active!

My story, in a nutshell: I've been married for almost 18 years, and in 2008, my husband lost his vision in a car wreck. He is completely blind. He spent some time at the School for the Blind in our state, but did not complete the course. He felt he did not need all of the instruction that they provided. He has a measure of independence - he can manage around our house quite well, and does ok when we go out, as long as we walk slowly, or I lead him.

My issues are my own, I suppose. Since the wreck, I've become the responsible one in the family - all chores are mine, inside and out. We live in a very rural area, so when we need something, it's me who is driving - and it's a daily thing. That responsibility is becoming depressing. I feel like I'm living a lie...

We go places, and people look at me like I'm some sort of a saint. "You're so brave! You're so good with him! You're so patient!" I don't want to be anyone's hero! I just want to live a normal life again. One that doesn't involve crushing depression and the feeling like I can't keep up with everything that life is throwing at me.

I'm very glad that I've found this site. Like others out there, I've needed a Support Group for a very long time, but there are no resources available for the Spouses of Blind Folk near me. Sometimes the internet is a lifesaver, yes?


Re:Help for Sighted Spouses



SORRY I DIDN'T LEAVE MY EMAIL ADDRESS FOR ANYONE WHO WOULD LIKE TO KEEP IN TOUCH. baf2828@aol.com


Re:Help for Sighted Spouses



LIVING WITH A BLIND SPOUSE YOU NEED TO BE FLEXIBLE, HAVE SENSE OF HUMOR AND ALOT OF PATIENTS. WHEN WE GO TO A WEDDING TYPE OF AFFAIR MY HUSBAND CAN NOT STAND THE DARK ROOM OR THE HIGH LEVEL OF NOISE. AT MANY OF THESE WE WIND UP JUST MAKING AN APPEARANCE AND LEAVING EARLY. SOME PEOPLE DON'T UNDERSTAND AND OTHERS TRY.. WHAT HAPPENS IF HE HAS TO USE THE REST ROOM? HE HAS TO ASK ANOTHER MAN TO TAKE HIM. I TRY TO SOCIALIZE WITH PEOPLE WHO I AS THE SIGHTED SPOUSE FEEL COMFORTABLE WITH. PEOPLE WHO LEND A HAND, TREAT YOUR SPOUSE "NORMALLY" AND DON'T MAKE A BIG DEAL OUT OF THE LIMITATIONS. SOME DAYS ARE REAL CHALLANGES AND SOME DAYS ARE SO WONDERFUL. FOCUS ON THE WONDERFUL DAYS AND KNOW THAT THERE ARE ALWAYS GOING TO BE UPS AND DOWNS. BE STRONG AND TAKE CARE OF YOURSELF SO YOU CAN BE THERE FOR THAT WONDERFUL PERSON YOU LOVE WHO HAS LOST THE ABILITY TO SEE BUT CAN STILL SEE YOU IN THEIR HEART AND REALLY DOES APPRECIATE ALL THAT YOU DO.


Re:Help for Sighted Spouses



Thanks ... I am afraid that public transportation is weak where I live but we could choose to live close to some important amenities. Other support services are very weak. My own thinking is that we can probably do with this one kid. But, I don't know for sure ....


Re:Help for Sighted Spouses



RSRSRS,

Wow, it definitely seems as though you and your significant other have much to consider and discuss regarding your futures, independently and together. Maybe the two of you should discuss some of your concerns, and if not, some items that may assist you would be to examine your current living situation and environment. What resources are available locally for individuals who are blind and their families? Do you live somewhere that has reliable public transportation?

I can share with you that I have a male friend who is both blind and hearing impaired, a single father, and has raised his son since infancy, by himself - despite his hearing and sight loss. He is an access technology instructor, and teaches individuals with sight impairments (and those of use who do not have sight impairment and need help) how to use the computer and access technology. I have a female friend who has RP; she has four children of her own; one child has RP, but the other three do not have it. She teaches teens and adults with low vision and blindness how to self-advocate, use access technology, etc..

Just a few things to think about - anything is possible.


Re:Help for Sighted Spouses



Well ... I am a potential sighted (male) spouse. I am seeing some who is new to the States and is now legally blind from retinitis pigmentosa. Although there is nothing formal as yet, I know the question of marriage will arise very soon.

She is a very nice person. Sweet, sweet. But I need to be realistic about this. She has no clue about living in the U.S. She is a qualified teacher in her country and she can get certified to teach here. However, I think there is just too much happening. She is 40 and so if we get married, she will want to get pregnant soon, if that is still possible. Combining a pregnancy, trying to get certified as a teacher, looking for a teaching job, learning the ways of the U.S., all just seem too complicated to me.

To boot, retinitis pigmentosa is hereditary.

I live a busy professional life. My own job is demanding, although I do have very flexible hours. But if I ever wish to get a promotion and make some more money, I am going to have to put in those hours. I also travel about once every 2 months. If she does not work, our standard of living will be reduced quite a bit.

I really do not want to sound selfish or mean, especially because she is such a sweet gal. If I do not marry her, I really do not see her ever enjoying the beautiful experience of marriage.

On the other hand, I need to be realistic. From your experience, do you think this is something a guy can handle?


Re:Help for Sighted Spouses



Well ... I am a potential sighted (male) spouse. I am seeing some who is new to the States and is now legally blind from retinitis pigmentosa. Although there is nothing formal as yet, I know the question of marriage will arise very soon.

She is a very nice person. Sweet, sweet. But I need to be realistic about this. She has no clue about living in the U.S. She is a qualified teacher in her country and she can get certified to teach here. However, I think there is just too much happening. She is 40 and so if we get married, she will want to get pregnant soon, if that is still possible. Combining a pregnancy, trying to get certified as a teacher, looking for a teaching job, learning the ways of the U.S., all just seem too complicated to me.

To boot, retinitis pigmentosa is hereditary.

I live a busy professional life. My own job is demanding, although I do have very flexible hours. But if I ever wish to get a promotion and make some more money, I am going to have to put in those hours. I also travel about once every 2 months. If she does not work, our standard of living will be reduced quite a bit.

I really do not want to sound selfish or mean, especially because she is such a sweet gal. If I do not marry her, I really do not see her ever enjoying the beautiful experience of marriage.

On the other hand, I need to be realistic. From your experience, do you think this is something a guy can handle?


Re:Help for Sighted Spouses



Hello CakeLady - My name is Anisio correia and I am the Vice President for Programs at the Center for the visually Impaired (CVI) in Atlanta. Currently, we do not have a support group for sighted spouses but I would love to talk to you about the possibility of starting one, provided you live in the greater Atlanta area. At CVI, we do offer a number of support groups for persons who are blind and visually impaired and sighted family members are always invited to attend as well. Below is my contact information. I hope you contact me so we can discuss the possibility of starting a support group for sighted spouses. I just finished reading all the messages in this thread and the need for such a group is certainly very clear.

Anisio Correia
Center for the Visually Impaired
739 W. Peachtree St. NW
Atlanta, GA 30308
404-602-4291
acorreia@cviga.org
www.cviga.org


Re:Help for Sighted Spouses



I am so excited to finally find this support site! As it definitely appears from most other responses, there is NO help/support for us sighted spouses. My spouse of 27 years is also deaf. She recently got a cochlear transplant and that is changing our world daily (for the better). However, at the same time her eyesight recently took a really bad turn for the worse (RP) and she is now down to @ 4%. At the same time she lost her dream job she had worked all her life for. How many ways can you say depression? Anyway, I'm just so alone with all of this. Just as I can't really "know" how she feels, none of our friends or family can really "know" how I feel. And, like most of you, feel so terribly guilty for actually getting angry that I have lost so much of my own life now. She tries to encourage me to take time for myself, but with all that I now have to do there's just so much time in a day and I have just so much energy. I REALLY get angry when I discover that not only is my state (Georgia) totally without spousal support (or for that matter any true counseling-type support), but apparently that's the case in most states. I am currently contemplating starting just such a support group here, but would definitely appreciate continued e-support. If anyone is interested in direct contact with me, my email is kathycakes1@bellsouth.net. I do love my wife, but I also love me. Like so many others, "divorce talk" seems to happen more frequently and it is scary. Please let me hear from you. Thanks and may God continue to bless our spouses/significant others and ourselves. We are not in this alone.


Re:Help for Sighted Spouses



Well, on 12-30-10 it will be one year that my husband has been blind. The 22nd birthday of our twins. The emotions in our house hold are all ready beginning to run high! It has started to get dark outside early now. And by the time I get home it is dark outside. And I come in and its totally dark in our home and I will find him at the kitchen table just eating a sandwich in total blackness. I feel so bad for him... it takes everything I have to just not cry right then and there. I just dont know how I am suppose to watch this every day and not have a nervous breakdown. He is the one going through it and I feel like I need to be stronger, but it just hurts so much see him like this.


Re:Help for Sighted Spouses



Patches, both you and your husband may benefit from contacting these local resources:

South Carolina Commission for the Blind – 800-922-2222

National Federation of the Blind – South Carolina - 803-254-3777

American Council of the Blind – Betty Jones, President - mrsbettyjno1@hotmail.com


Re:Help for Sighted Spouses



Sorry to hear about your husband sunset. I understand both the sadness for your husband and the need to get away. You no longer have that alone time that we all need. Has your husband found support? There is a lot out there, it might help if he becomes active in his life again. My husband lost the rest of his vision in Dec 2009, too. You will find you grieve not only for your husband's loss of sight, but of all the things you used to do together, but hopefully you will find new things to do together and you will find the encouragement you need, too.


Re:Help for Sighted Spouses



Hi, my husband went blind on 12-30-09. He suffered a rare form of a common illness and has severe optical never damage. No light perception at all. Its very hard to be 100% responsible for everything. I am very over whelmed. Some mornings I wake up and cry all the way to work. Cuz I feel so bad for him. He is such a wonderful person. We are together every minute of every day except when I am at work. once a month i go to the casino for 3-4 hours to get away from him and I feel guilty for leaving him. I just feel bad all the time.


Re:Help for Sighted Spouses



I too would like to find some helpful resources. My spouse started losing his sight in 2004, was declared legally blind in 2007, hasn't driven since 2004. He was diagnosed in 2009 with Normal pressure hydrocephalus. He is recovering, slowly, but surely. Most of his problems now are lack of visual rehabilitation, particularly in South Carolina. I am his strength but sometimes need help myself. I am interested in ways other spouses of older blind people have coped and where they have found help. Just call me Patches


Re:Help for Sighted Spouses



To R Saller--There are services for people available at Horizons for the Blind in Crystal Lake, IL. You may want to check there. Here is the number--(800) 318-2000
AFB Senior Site staff


Re:Help for Sighted Spouses



To RSaller, I am sorry to hear about your wife. I am sure she feels your disappointment and anger and I think that is why she pretends that everything is okay. I don't think she would know what to do without you and probably does not know how to tell you that. I do understand how tiring doing everything can be. I know this is not much help and believe me there is not much support out there either. And this sight is hit and miss, but I have looked around the internet and in my area here (Michigan) and I don't think sighted spouse's problems are important - and no wonder the divorce rate is in the high 70%!!!

And Yanky Maid, yes life does get difficult and we do need a safe place to vent and encourage one another, but good luck finding it! I would suggest maybe calling your Senior Center or if you have an organization for the Blind, but don't get your hopes up. I am 54 working full time and I have been looking for 3 years and there is nothing out there and in my search all that I heard is a bunch of apologies that aren't worth repeating.

I asked my husband's Social Worker for the Blind if the divorce rate is so high (she quoted that percentage to me) why is there no help for those that are dealing with this side of the issue? Her answer was: "Good question", but let's focus on your husband right now! AUGH!!!


Re:Help for Sighted Spouses



Would love to hear from older sighted women who can give some pointers on dealing with the occasional resentment and anger that results from caring for a blind mate.


Re:Help for Sighted Spouses



I have been married to a woman for 46 years who has now become totally blind. She had partial vision when we met. We have 4 grown sons. I am 69 and have to work and do everything that requires reading or writing. I have to drive her everywhere and our marriage is going downhill. She thinks that our life is normal (within reason) and I am getting sick of having to work and then do the things that a sighted person could do. I have never met another couple with this situation. Any thoughts or ideas. My cell is 630-660-2429. We live in Round Lake, IL. Thanks !!!!


Re:Help for Sighted Spouses



Does anyone here know of a more active sight that can offer help to those living with those that are blind/visually impaired out there? I have nothing in my area and so far online has been disappointing. We are sinking fast and no one seems to want to talk about it. Maybe we could start our own online support group, not unless there are any good suggestions out there. Thanks!


Re:Help for Sighted Spouses



Hello. My name is Jean and I am with Blindconnect, an information, referral, and peeer support organizaiton in Las Vegas. We have a support group for those with vision loss. Additionally, we can meet with you to discuss issues and to make appropriate referrals. Our phone number is (702)631-9009; please tell us that this is a referral from AFB. Thanks.


Re:Help for Sighted Spouses



My 43 year old partner lost sight in both eyes last November due to retinal vasculitus. For the most part he has maintained a positive attiitutde for which I am very grateful. We have reached out here in Las Vegas but have had trouble getting in contact with the people in charge to get him involved. I would like to see him meet, make friends and socialize with other blind people in our area for support and reassurance. Is there anyone out there in Las Vegas or elsewhere who can help?


Re:Help for Sighted Spouses



I am newly married. I knew my husband had Glaucoma when we got married. He had already lost vision in his right eye, but still had some sight in his left. He could and did do a lot. We continued with medicial treatment including 10 surgerys and a lot of medicine and he still lost his sight in his left eye this past December. He is still grieving over it and is very angry. I am at a loss on what to do for him. Everything turns into an argument. He goes nowhere and I do all the running around plus work full time. I did give him my resignation last week. I will no longer be his nurse - I am his wife. So, if he "needs" something - he will go with me to get them or take the bus otherwise he will go without. He sleeps about 12-14 hours a day and the rest of the time sits on the couch with his eyes closed. I have talked to the Association for the Blind and they have no support groups for spouse/significant others only the blind. And he has attended the group, but it deals with no issues involving emotions - just new gadgets. That is depressing to me and to him. He needs to talk about this and definitley not with me because I can see.
Well, thanks for listening. I am thinking of starting a support group in my area. At a bar...ha.

Thanks for listening.
Linda


Re:Help for Sighted Spouses



This sounds like he is really struggling with many changes with not just his eyesight, but also his general health and loss of employment. Loosing vision suddenly can be very traumatic and often individuals and families benefit from some form of counseling to deal with the loss in addition to direct services from a vision professional that can be provided in the home (instead of going to a "group").
http://www.afb.org/seniorsitedir.as is a way to find these local services.


Re:Help for Sighted Spouses



MY HUSBAND LOST HIS SIGHT IN ONE EYE TO ISCHEMIC OPTIC NEUROPATHY AND THEN SIX MONTHS LATER LOST THE SIGHT IN HIS OTHER EYE LAST YEAR. HE HAS HAD TO RETIRE AND OUR WHOLE LIVES HAVE CHANGED. I WOULD APPRECIATE ANYONE WHO CAN GIVE ME ANY INFORMATION ABOUT THIS "STROKE OF THE EYE", ANY RESEARCH BEING DONE AND HOW TO COPE WITH THIS CHANGE IN OUR LIVES. HE REFUSES TO GO TO ANY GROUPS, USES A WATCH THAT SPEAKS THE TIME AND HAS A VOICE ACTIVATED CELL PHONE.


Re:Help for Sighted Spouses



No one should have to deal with all of these life changes by themselves. I applaud the efforts to get connected via message boards, email and blogs. I do think that face to face, sharing over a cup of tea & with kleenex on hand is healthy too. Perhaps you can give permission, to your spouse's Counselor from the Commission for the Blind or Vocational Rehabilitiation Agency, to share your contact information with others on their caseload. This may provide a few local folks that could be easier to connect with. Joining one of the consumer groups (such as www.ACB.org or www.NFB.org) together may be a way to connect with other spouses.


Re:Help for Sighted Spouses



http://spousesoftheblind.blogspot.com/


That website is one I started. I felt alone. My husband is 31 I am 24. He went blind when he was 28. It has taken us this long to come to the conclusion that it is not his fault nor mine. It has taken this long to figure out that I cannot depend on him. He depends on me. He is a mechanic, a speeding ticket away from suspension, work til you drop, kind of guy. Or he was 3 years ago. We have been married for 4 years. There are times I feel selfish and think... I did not sign up for this. I want a normal life. But then I think... so did he. No one asked for this. This is life and this happens. We almost divorced ... oh about a million times. Never filed, but screamed it at the tops of our lungs. Then collapsed crying. This is a tough road. This is a lonely road. We do not have to be alone here. If you want go to my site. Or just email me . But it is nice to see I am not the only one.


Re:Help for Sighted Spouses



AFB Senior Site (afb.org/seniorsite) has a section on finding help and support. You can find info re support groups and a guide for family members.


Re:Help for Sighted Spouses



There are others out there. Scanning through previous posts, several people, including myself, have offered email addresses for those who would like to communicate more directly and more frequently. Guilt is not uncommon and as you already know your own health is important. If we caregivers set up an email chain, I believe we can support each other. To start us off, my email is Traveler629 @gmail.com.


Re:Help for Sighted Spouses



My husband developed a retinal deterioration disease as a teenager and is now severely visually impaired in his 40's. I have perfect vision, and often feel guilty when I get frustrated with all the responsibility that I have to take on because of his impairment. But, I feel that he misunderstands me as much as I do him. Sometimes it gets to be too much... I begin to wonder if it's even worth it. Are there others like me?


Re:Help for Sighted Spouses



To all,

I'm sorry for the tough go of things at the moment. I am 32 and my husband was diagnosed 2 months ago with advanced pigmentary glaucoma. He's lost his license and a lot of motivation and obviously a lot of vision. I am finding it really difficult to handle sometimes too. We don't know what the future holds. We have a 16 month old, and I am pregnant again and sometimes I just feel overwhelmed. If you'd like to connect, I'm at lauradigiovanni77@gmail. I think support in any capacity can help us all!

Laura


Re:Help for Sighted Spouses



I am a 39 year old woman who after 19 years with my husband has "lost him" when he lost his eye sight to vascular glaucoma. We are still a young couple and I forsee a very long and overwhelming road. We are two months into this and our fights become more frequent as time progresses.

His element of physical activity has gone from doing a great deal to go to work to now, moving from the horizontal position on the bed to another horizontal position on the couch.

I am struggling to not only make money to make ends meet, but keep track of Dr.s appoints, family drama, meds and my own health that my house and my clients sometimes are neglected and vice versa. There is not enough of me to go around.

In my opinion, he believe's that he is not entitled to be waited on hand and foot and I can't seem to motivate him.

ANY help or someone to talk to at this point would help... as I don't think we will survive another year if I have to continue at this rate. My health can't take much more.


Re:Help for Sighted Spouses



I am the sighted spouse of a man who is legally blind with RP. There is no support group for sighted family members where I live. Making the problem more difficult is the fact that my husband refuses to learn mobility skills or interact with other visually impaired people at the support group for the blind. He has also ostracized himself from any social contact outside of our immediate family. I deeply empathize with your situation and perhaps we could support one another via email. You, and anyone with a similar challenge, may email me at traveler629@gmail.com.


Re:Help for Sighted Spouses



hi i am new to this website i am fully sighted married 32 years to my husband who is severly visually impaired i am 58 years old am employed fulltime at an assisted living facility have worked for 19 years have 2 beautiful grown daughters am a new empty nester there are no support groups here in columbus ohio it would be great to talk with another woman who needs a friend and a support system there are not to many of us out there we need each other it gets lonely andoverwhelming at times


Re:Help for Sighted Spouses



Maybe this should read help for blind spouses on how to talk to your sighted spouse. My husband lost his sight in a accident when we had been married for 20 years. That was 5 years ago. The newly blind are often helped toward "independence" by those who have been blind for a longer period of time and are, sad to say, told that their sighted spouse doesn't understand them. My husband and I almost divorced following his so-called rehab due to the negative influences and brainwashing there. We were forced to be physically separated for a whole year! I was kicked out of my own marriage. it hasn't been the same since. MMF in Philly.


Re:Help for Sighted Spouses



Make that "he" or she in my last response. Sorry for the assumption.

Kathy Roberts
Cincinnati Association for the Blind & Visually Impaired


Re:Help for Sighted Spouses



I agree with the suggestion that finding a support group, if there is one in your area, could be most helpful. You might want to check this out. My other question is if your spouse has had sufficient training to be as independent as possible. Has she had rehabilitation teaching, mobility training? Has she benn taught to perform daily living skills herself? Had she been provided with adaptive equipment in order that you are relieved of so much responsibility? If not, again, you need to contact your local vision rehab agency to request services.

Kathy Roberts
Cincinnati Assoc. for the Blind & Visually Impaired


Re:Help for Sighted Spouses



Yes, it is hard and like you I feel quilty a lot, things just take so much longer to do mentally and physically.


Re:Help for Sighted Spouses



I know just how you feel, i kick myself sometimes because i feel like i'm being selfish but its just as difficult for me as it is for my boyfriend.

I had to move in with him when he lost his sight - our agreement had been that we'd wait until we got married before we moved in together. I have to bend that one because of the accident and that's ok with me but when i bring up the subject of marriage he's all evasive or it sparks a major fight about about his condition and so forth.... am i being unreasonable?

I love him


Re:Help for Sighted Spouses



Depending where you live, there may be a support group in your area. In Iowa, we have a database of support groups that we offer to anyone seeking this information. Your state's agency for the blind may have something similar. Support groups can offer a great opportunity for much needed peer interaction and understanding of vision loss. To find the state agency in your state, visit http://www.ncsab.org/ncsab_directory.htm.


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