Susan - posted on 11/21/2013 ( no moms have responded yet )
Good Day everyone
I hope I can find a place here. I am a Mom but my daughter is not why I am here. I was hoping for support in terms of my husband. He is very low vision and his condition is deteriorating even further. We are trying to come to grips with the fact that he will most likely be completely blind in the future. We have only been married for 1 year and in that time he has seen ne through so many health issues (on my part) that I feel guilty for the overwhelming fear and sense of responsibility I experience periodically. Dealing with state/government agencies is a joke; miles and miles of red tape to get any kind of help or answers about benefits. I am ashamed to admit that the only way have gotten any kind of help or response from BESB (Bureau of Education and Services for the Blind) is by writing repeated strong emails. Then after a day or two of prompt attention, it goes right back to ignored phone messages, unanswered emails and being told that they are 'very busy' when they do help. Very frustrating. It's as if my husband is seen only as a disabled person, not a person. I am in a frustrating position; my inclination is to speak up when I see him treated shabbily (which is often) but I don't want to undermine him either. I can rattle the cages all I want but in the end he is the one who has to deal with these agencies directly and if I make too much of a fuss, they are that much worse to him. Plus, after a lifetime (his condition is from birth) of dealing with people 'passing the buck', he is beyond frustrated and just doesn't care. How do you act as a warrior for your loved one and keep your sanity?