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  • Hi
    I read your post and I'm sorry things are so tough for you right now. My mom was also bulbar-onset, she passed in December, 2 years after diagnosis. Like you, I thought it would never end, but of course it does. I could only get thru one day at a time, looking into the future just further exhausted me. I'm glad that you hired some help for yourself. I have 2 brothers also, but my mom only wanted me. I wish you strength, you may hate what you have to do right now, but I don't think you'll regret it.

    My Mom was diagnosed with bulbar onset ALS about two years ago. This has been a very exhausting last couple of months and I feel as though I'm at my breaking point in caring for her. I am her primary care giver along with my dad and two brothers. I wake up every morning and think I can handle this, and by mid morning I'm ready to scream or throw in the towel. I am just not sure how much time she has left and with that being said I try to dig deep to be as nice and caring and attentive as possible. I'm just feeling so worn down. I've hired a part time caregiver to come in and give me some breaks but I think my mom is getting upset at the fact that I am leaving the house, and I feel guilty about that. She doesn't want me to leave her side. This is just really taking a toll on me. I try to think how she must feel and I know that must be far worse. I think we are both Feeling different levels of selfishness at the moment.
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