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Welcome Linzann! Sorry about your husband.

Hope you find comfort and hope being a part of this forum.
 
I went through the EXACT same things with my father and it was very frustrating. I tried to stay calm and not let it get to me but sometimes it did. Do you know what that taught me? That getting upset with him to where I could tell him how unfair and hurtful he was being was the only way to get him to see how awful his behavior was. I always felt guilty afterwards but he became more patient with me over time. It is a horrible thing that our loved ones are going through and it is horrible for us as well. We want to be there for them in every way possible and in their frustrating sometimes they push us away. It's not personal, they are losing their independence, their pride, their way of life and their lives... but it is hard not to take it personal.

As my fathers illness progressed he became less mean and once he stopped fighting against using a wheelchair and accepted it, he became more receptive to help for the other things he needed help with. When he moved to Hospice he allowed his friends and family to visit more frequently and has mellowed and seems to appreciate them now. It has been a tough battle to get to this point where he is actually content... but he's there and I hope that your husband can get there sooner rather than later.

I didn't read everyone's comments but I'm sure that someone must have suggested that maybe your husband can come on here and talk to some of the others that have ALS. It could help him to know others understand EXACTLY what he is experiencing. However, if he is anything like my Dad, he won't want to surround himself with others like him... his solice has mainly been in getting drunk each night (I now put the Irish Creme straight into the g-tube) and watching animal planet. Acceptance comes in waves and your husbands youth, as well as him having a young child, probably make this all the harder for him to accept. He doesn't want help, he resents needing it, he hates what is happening and maybe he thinks that by refusing what he needs that he can deny the illness. Unfortunately the mental part of ALS is brutal for some and while we want to be perfectly patient, it may not be the healthiest choice. Talking to him bluntly when he is NOT in the middle of a tantrum may be an option... that's the best thing I can suggest. It helped when I did that, when Dad was rational enough to listen and feel some shame for his behavior. Maybe it would help with your husband?

Take care of yourself, get the help that YOU need and lean on us here... we understand and we care deeply.

Sandy
 
caregiving

Dear Erin

Was so glad to read that your Mom is so close by. That is blessing for sure.
I am so sorry that at your young age your husband has this disease. My husband is 58 and I think that is too young.

I will pray for your husband and for you! and Morgan too:)!

Patty
 
Erin,
I hear everything you are saying. I think the anger is the hardest thing to deal with! I consider myself a generally happy person..but the anger is draining. I understand the anger, but I also want my husband to find peace..and live while he can. Most importantly, I want my children to see that their Dad is a fighter..and intelligent, funny, caring man that he is. The stress involved with this disease is incredible. Please know that I understand everything you are saying...if you ever want to chat..let me know. Fondly, KR
 
I can not tell you how comforting it is to read all of your posts. I have not quite figured out this web site and do not have a lot of time and patience so I hope this touches base. I have taken a little advice from all of you. Chris and I have had a lot of talks since I first posted and we actually had 3 glorious days together as a family getting along. Things have since slid back to anger and bitterness but I am hanging on to those days :) But at least he talked to me and now I know he is depressed and angry at the disease. I am also aggressively taking your advice by pulling myself out of isolation. I have been inviting people over without asking and told some his friends to just stop by the house. Sometimes it really helps Chris to have people over but he will never okay the visit.

I have talked to his close friend and we both agreed that Chris is sliding over to the acceptance period of his grief. Up until this point, he firmly denied that he had ALS and that they just haven't found the cause of his symptoms. After a long trip to the ER a couple of weeks ago and the 5th doctor to tell him he has ALS, I think a lot of this extreme anger is reality checking in.

I know y'all understand but nothing in the world could have prepared us for this test and journey of life. It's hard for me to remember how I thought before Chris' diagnosis. It has changed us forever. Fortunately for Morgan, I think I will be a better Mother because of it. I don't take things for granted anymore and I am a more understanding, patient, calmer human being.
Peace and Love,
Erin
 
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