GaPeach
I am so sorry to hear of what you and your husband are going through. I can identify with some of it to a point.
18 years ago I was a workaholic in the best job I had ever had in my life loving every minute of it and not prepared for what was to come. I had very little savings, then it happened. I had a plane accident in Alaska and boom overnight I was on disability. My income was not enough to live off of and I had to go to court to get workers compensation since it was an on the job injury. It took over a year before my case was heard. Meanwhile, I used all my saving, and made the best of a bad situation. Overnight my whole life changed, I had to return to the Mississippi coast to see a neurosurgeon and receive treatment, and here I am today.
I loved ALaska, I loved my job, and I felt I had disappointed my family, wife, and 4 kids, because now I could not provide for them as before. I became suicidal, and had to go for help to adjust my outlook on life. I thought life was not worth living.
Now 18 years later I have adjusted, become a Christian, and love every minute of life and BAM I get DX with ALS. It's ok though because I am happy with my life and what I have been able to do even with the disability. I now have 4 children, one is a doctor, one is about to graduate as a Lawyer, one is a social worker with the Katrina victims, and one is a Deputy Sheriff. I also have 14 wonderful grandchildren.
I'm saying all this to let you know your husband needs moral support at a time like this. He needs to know you love him and are willing to do anything to help him during this horrible time or he might just give up. Emotional encouragement is very important for him at this point. Try to let others know that he need encouragement that this is something he is not going to go through alone. He probably is not telling you what he is thinking, how he might be giving up, or how he feels there is no hope.
I know you have a lot of "WHY" questions right now, but stop and think about what must be going through your husbands mind. The "WHY" is not as important as forming a plan of what are we going to do now. I don't know you or your husband, but I know how some men react in a situation like this, they give up, and now is not the time to give up. Now is the time to focus on living every day, every moment he has left, enjoying life and spending time with those that he loves.
I don't mean to sound harsh or upset you, I'm only concerned that your family focus on the days ahead in a positive way if at all possible. I know it seems impossible, I've been there, I was DX with ALS May 11, 2006 after 2 years of symptoms. We are all wishing and praying for the best for you and your husband in this difficult situation.
Please invite your husband to come to the forum and let us help him. There are many of us here who who have all stages of this disease, and I know he must have a million questions about what is going to happen to him. We can help answer those questions and help encourage him if he will give us the chance.
God Bless,
Big AL