I don't think my husband realizes how bad his negative comments about my disabilities hurt my feelings. He is always getting so upset when I cannot do something physically with the family or my daughter. If we do go somewhere where there are steps, and I have my walker, not my cane. He just about has a fit. "Why did you bring your walker. Now we can't do this, cause you cannot go up the steps!!!" You know this disease is not my fault. I hate it! Why doesn't he understand? If he wants to do something I cannot do he gets so mad and then he yells "Oh, here's another thing we can't do because of you." How nice.
Oh butterflyaway I feel for you. I know what I would like to say but I cant. But I will say. If he was a real man. That loved you. He would help. My ex that hates me even helps if I need it. May, could it be that your husband is just scared? I know you once said he drank. Well I know from experience that is a lost cause. Have you tried counseling? Nothing is your fault! This disability is very mean. You don't need help feeling like shit when you already do. Sorry about your situation. I really wish I could do more for you. I know what you are going threw. And it could be bad. I worry. Please get help for something.
In a certain (limited) way I can understand his frustration and anger. But I do think he needs to control himself and get in touch with his emotions. Many times I look at my wife trying to do something, or listen to her try to form words and I fill with anger. What I want to do is scream at “her” situation and tell IT to just “cut the shi*t” and go away! And sometimes some of that anger does come out in my voice and my wife asks me why I am speaking so harshly to her. Or asks why I have such a nasty look on my face.
So just tell him it’s not because of you! It’s because of a mystery of life that is not even understood by the best of the best neurologists in the world!
Butterflyaway, You need to get and say strong. I am worried about you. You need to feel good about yourself. Your family does need you. You can only do what you can. This is a disability we did not choose. God gave it to us. Why? No one can answer that. Counseling helped me to be stronger. Give it a try. No one has the right to pick on us for this!
aw that's awful - I always think it is worse when the wife has ataxia rather than the husband but thankfully my husband is comparatively patient and understanding.
It has taken some time for him to accept my disability but since I have been running our local ataxia support group it has helped.
Unfortunately I cant give you any advice - it is what it is .. as my son says about everything! We just have to work through it.
Hi Butterflyaway, you know what's wrong. He's afraid. He sees what is happening to you but he does not understand it. You look healthy on the outside but like the rest of us your a bit broken on the inside. He is afraid of losing you to this ataxia and he is frustrated because there is nothing he can do to stop it. The only thing he can do is be angry. He is not angry at you but at your condition. The other day while I was walking with my wife I fell. My wife started laughing because it was funny the way I fell. A man passed on his bicycle and asked if I needed help. I said my wife hit me and we all started laughing. He has to change. If he keeps getting angry and won't take the time to come to terms with your condition, like Lori said you have to think about counseling to make him understand. Whatever you do I hope it works out good for both of you. Best of luck.
It must be very painful for you to not have the support you need! I so understand how that feels.
Perhaps when there is not any situation happening you can just ask your husband how your ataxia is affecting him and then paraphrase back to him what he says. Both of you would need to be sitting with the TV and computer off or in another room. Sometimes people just need to know they are heard and understood (NOT necessarily agree with!!). It would be just a time to let him talk and you listen. Don't interrupt him, just keep your eyes on him and nod your head etc so he know's you're listening. Saying things like, "that must be really hard for you." is a good thing. This might sound crazy, but it might work too.
Then plan another time to talk with him about planning ahead for activities and outings to make it work for everyone.
Counseling with someone who specializes in care-taking situations would be awesome.
I believe it is very hard for our caretakers/spouses. They don't get the sympathy that the patient gets from others.
Please know, I sympathize with you! My ex was a very unkind person (jerk). I would be encouraged that he even wants to do things with you. My ex would just leave and go do his thing...sometimes being gone for days.
Having read your brief description of the difficulties your husband presents when you try to take part in a family outing, it would be very difficult not to feel for you Butterfly/A . Someone needs to talk to him and explain the difficulties we face, not simply in navigating the physical world but also in coping with the heavy psychological burdens which accompany ataxia. Perhaps a family friend whom he respects could take on the task. Even if it resulted in a rift between them perhaps your husband would nevertheless get a glimpse of the despair, the fear, the joy of being understood and all the other emotions which accompany our condition. Until something happens to alter the situation, you've still got this site where you can vent your frustration and also [apart from this message] receive some sound advice and heartfelt support. Colin
Hi,
I am saddened about the episode. When your husband is in an understanding mood, share your difficulties.
We all love to be normal and for which we struggle and to be hurt by our loved one is the most saddest thing. Your husband needs to see some touching videos about Ataxia and neurological issues. I am sure he will learn to be more supportive and caring. We are not actors here but unfortunately we are not understood
Be strong and try to erase the displeasure created for a harmonious living. Harmony will soothe our hurdles and heart. I will pray for your well being. Cheer up.
butterflyflyaway, I grew up with a mother who had alcoholism, and later hereditary Ataxia too. Of course in those days no one knew she had a genetic disease. They attributed her ataxia to alcoholism. It was very hard for our family to deal with. When someone is sick all the time, the entire family must rotate around the needs of the sick person. It's just the way it works. My dad, and all of us kids hated that my mother's disease, alcoholism, dominated everything in the family. She couldn't help it, she didn't cause the disease, but that didn't change how we felt. It wasn't until I started going to Alanon that I began to learn the tools necessary to live with someone who is ill all the time without being angry at them. Your husband may need this kind of support, something you can't give him. He may need outside help to deal with what's going on. On the other hand, if he has a drinking problem, you need help understanding his issues, and understanding from others who live in the same situation. . Counseling will help you both, unless what you are dealing with is a drinking problem. It's an illness all by itself and you need help to live with that. Go to Alanon. Find someone living with a spouse who has a drinking problem who is willing to take you. It may be that you are not the only one in the family that is suffering from a serious illness.
What I learned in Alanon, and later in AA has been a blessing in dealing with the everyday challenges of Ataxia. Families often have many things going on at once. Sometimes, it seems like it not only rains but pours all over you. While dealing with Ataxia, lousy doctors, social security, foreclosure, loss of job and business, and no money as a result, my son became addicted to Heroin, and so did his wife. Two beautiful young grandchildren caught in the middle needed all the help I could muster up. And I don't have a husband to share the load. Plus trying to do what I could to protect my grandchildren from harm from their parents AND keep both parents from killing themselves with drugs seem to fall heavily on my shoulders. I don't know where I got the strength to deal with all this, but did. My son, is clean and sober and his children are safe for now. It didn't happen overnight. He went through treatment 5 times. His wife is still trying to get sober.
Get the support you can for maintaining a healthy self-esteem. You can get that here and in Alanon. And get honest with yourself about what else may be going on. If you drink right along with your husband, it may be that you both have a drinking problem. It wouldn't be the first time that two people in a family struggle with this. You can't change what you won't acknowledge. Good luck to you.
Sounds to me that your husband is at one of the stages I went through, he is at war with himself. (he may also be silently grieving, I know I still do) Hes desperatly trying to find someway to find some control the situation your family is in, consciously or subconsciously, he is taking it out on you. He really needs some help in coming to terms, How you do this is a difficult one, because of pride, I dont know how you feel about this, but it might help if you simply tell him he is hurting you, everytime he starts on you, get it out into the open. Its worth fighting for :)
Its taken me many, many years to accept my husbands ataxia and our situation, we still fight for love to this day.
Of course you feel hurt, as you have a disability you did not ask for! I agree with others. that your husband is scared for you, and he's not angry with you, but the disease. Counseling would help both of you. My husband has been very supportive, but I had a hard time dealing with my ataxia. Therefore, I went to counseling for a while and got the help I needed to cope. We all handle things differently, and your husband needs some coping skills for your ataxia. With the proper help, he will be more understanding and not angry about your disability. I'm thinking of you... ;o)
I try to encourage my husband to carry on living life to the full.
Because I was so independant he tries,like me ,to ignore the MSA I suffer from but I know he will have to carry on alone as our children have their own lives and families and I want him to have his! The point I want to make is that he would probably be more openly sympathetic if I had not been (and still try to be) so independant. My daughter said he is really worried about me and the fact I spend so much time alone.Don’t get me wrong-we have shed a great deal of tears together over this horrid disease and probably will shed a few more, but we’ll get there somehow, I’m sure.
I try to encourage my husband to carry on living life to the full.
Because I was so independant he tries,like me ,to ignore the MSA I suffer from but I know he will have to carry on alone as our children have their own lives and families and I want him to have his! The point I want to make is that he would probably be more openly sympathetic if I had not been (and still try to be) so independant. My daughter said he is really worried about me and the fact I spend so much time alone.Don’t get me wrong-we have shed a great deal of tears together over this horrid disease and probably will shed a few more, but we’ll get there somehow, I’m sure.
