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I was the caregiver to my husband. He was diagnosed in 97 and passed in 2001. I was pregnant with our fourth baby. He was 45 and I 36 when he was diagnosed.It was 4 yrs of hell for all of us and my husband never reached #5 acceptance. It wil be 24 yrs since his passing and I can recall with detail the misery of him turning his family on me. They even had their own funeral a week after I had his. ALS changed my husbands personality to a hateful, mean man. Even to our children, especially our eldest son who was 9. My husband forbid me from telling anyone, even his own family he had been diagnosed with ALS until a year later, I threatened to walk out with our children. Then he only allowed his and my families to know. He coached every sport my children played, was very active in our church so when he stopped coming to games, church and social gatherings, it was I that would make excuses as to why. Rumors were we were getting divorced since no one saw us together anymore. You will be astonished that my husband and I shared alot of love and we had many, many moments of holding eachother crying and expressing our love and how we thought it would last a lifetime. He passed 3/15/01, 5 days after I turned 40. My oldest daughter who was 10 at time of diagnosis is the only 1 of our 4 children that will talk about her dad with me. The younger 2 were 3 and 6 when he passed and my son who took the most wrath from his dad, never speaks of him I never got involved with anything to do with ALS after my husband passed and I’ve lived 24 yrs without him although it seems like only a few weeks. Whenever I would go on any ALS forums, nobody ever talked about how ugly, painful and how it tears families apart. Thats the main reason I pushed those 3 awful letters ALS as far away from me as possible. You may think our relationship was already on the rocks but there could be nothing further than the truth. My husband was my everything and I love and miss him every day. If there is a family that has experienced the torture we faced, maybe I could help them. I know my husband would be so proud of his 4 adult children and our 3 grandbabies. When my husband passed, I never regretted not telling him how much I loved him and I know he loved me too. The reason I wrote this is because during his illness and after he passed, I met others with ALS, their families and caregivers and the story I just told you was unlike any others. It seemed they had a way to cope, find more bright days than dark. We just were not able to reach acceptance. Is there any families like mine out there?