- Apr 23, 2010
- Loved one DX
Hi. My name is Heather and my mom has bulbar ALS. She is 65 years old and was diagnosed last March. I am a married, stay at home mom of 3 children, ages 10, 9 and 15 months. My youngest son was born 2 months before we found out that my mom had ALS. I have wondered many times why God blessed us with Jameson (our 15 month old baby boy) at the same time as my mom's disease. I would have been able to help out more with her (my 2 other kids are in school all day) but unfortunately I can't right now. I do go over to her house a couple times a week at least to wash her hair or fix her lunch, or just help her with something. I know this disease isn't supposed to affect your mind but she isnt the same person she was last year. She almost has the mentality of a child. Her speech is very hard to make out and when she calls me I can't understand about 95% of what she says. She will not text although my husband bought her a device and we have showed her how to use it. I live 20 minutes away and when she calls I pack up my baby and head over to her house. Sometimes its something that could have waited, like "could you mail this letter for me?". My dad is her full time caretaker and this is obviously taking a toll on him as well. He owns a business and is a workaholic but has had to change everything since she was diagnosed with this awful disease. Neither one of them will even consider hiring any help which is very frustrating. My dad keeps saying to me "you have no idea what this is like..you don't live here." I find this very hurtful because, no, I don't know what it is like to be married to someone with ALS but I do know what it is like to be losing my mother slowly. I have one brother who is 3 yrs younger than me (I am 38) and we are all going through this ordeal alone. I have never been faced with a situation like this...where there is no hope at all. I am a christian and we are all praying for a miracle but I also pray that God would show her mercy and not let her suffer. She used to be a vibrant first grade teacher but now is completely hunched over, uses a walker,can barely walk, and barely communicate. The sadness is unbearable sometimes.