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  • Thank you so much for the welcome post. I am so sorry to hear that your husband has passed. Our stories are very similar and I appreciate know that you are there. I look forward to getting to know you more.
    Take care
    I'm so sorry you and your boys are going through this. I haven't been on this site much and just read your update on your husband's condition. Your in my prayers.
    I've been trying to post a reply - but keep getting an error - so I'll put it here for now

    Sorry for not posting another update - between work (new boss), kids, and running to sit with him everyday, I lose track of things....

    He's still hanging on - in grave condition, but kind of stable. He is still refusing nutrition and only wants enough water to flush his meds through the tube - I'm guessing that's only about 12 oz a day. He can barely lift his head to use his eyegaze - it's very sad. He refuses any kind of neck support, so he lies/sits there with his head hanging down alot. The hospice nurses are doing what they can to make him as comfortable as they can, but some days it just isn't enough. The hospice doc checks on him every morning. I'm guessing he only weighs about 100 lbs now. He has made it clear that if he becomes unresponsive, no nutrition or hydration should be given.

    I love that picture soooo much!! I am here for ya anytime you need hun!....Hugs, Kari
    big hug! thanks for the message!
    Its so nice to hear from someone who gets it! Home'careless' aids are so clueless that it would be funny if it weren't true. With out checking the temperature of the water, a care aid stuck my mom's foot in hot water in the bathtub. From the other room I can hear her cry out in pain and the home care aid keeps asking "what's wrong?" OMG
    Keep strong, and I hope you can some times laugh about the stuipedness of people sometimes.
    Did not see your post until now. So sorry! Parma Heights is next door to us. Thanks for your post. Ed is down to around 150 lbs last time we could weigh him. I still have a hard time until recently ALS Guardian Angels gave us a ceiling lift and it has made a world of difference for both of us. Hope you are doing okay. I know how difficult it is and even more so for you with young children. God Bless you and have a good day.
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