D
DadALS
Guest
Hello! New to the forum.
My dad has ALS. Aged 64. Diagnosed in November 2016. He's lost all ability to swallow and speak, although he continues to try. Can still walk with a mild left foot drop.
We moved to in September after sustaining two devastating hurricanes last fall. He was in fine when we moved. He dropped from 220lbs to under 100lbs and his doctor said he was going to die from being stubborn for resisting the feeding tube. He freaked at imminent death and got the feeding tube in May. He’s back up over 110lbs.
The problem in my state is that assisted living centers cannot do feeding tubes (unless they have the highest level of certification) so we put him in independent living. However, home care aides can not assist with feeding tubes only RNs. Which are pricey. He gets 3 feeds a day and Rizoule 2 times a day on an empty stomach. So that’s 5 trips to feed and medicate him. I found an assistive living person licensed to do tube feedings 25 minutes away and he refuses.
I have a busy home life of my own with a family to raise. Plus, I need to go back to work. I am so angry with him. He squandered so much money running a business that he doesn’t have the means to live the way he wants——independent with people to do the feedings so it’s all on me for now. Which is not sustainable.
And he’s so unreasonable and selfish with his requests and demands. He sends away the home health aides in the morning if they are new because he doesn’t want to deal with the change. He is texting me constantly and questioning my whereabouts.
I have no friends here and no work and no life. And tons of guilt. He needs to go to the assisted living center as he fell last week and had texted me in the middle of the night to come help with the trilogy. He has stated he doesn’t want trach but I am afraid he will freak out again and get it when he can no longer comfortably breathe.
I am trying to get MDs to discuss the process with him but they pawn it off on the next specialist. Primary says the neuro will discuss. Neuro says pulmonary should handle it. Can’t get in to pulmonary until December. He resists everything new until it’s too late, like the feeding tube I am so frustrated and depressed. And the not knowing how long we are planning for and what the next steps are, has me feeling totally overwhelmed.
Sorry for the vent but it did feel good to let all that dirty laundry out.
My dad has ALS. Aged 64. Diagnosed in November 2016. He's lost all ability to swallow and speak, although he continues to try. Can still walk with a mild left foot drop.
We moved to in September after sustaining two devastating hurricanes last fall. He was in fine when we moved. He dropped from 220lbs to under 100lbs and his doctor said he was going to die from being stubborn for resisting the feeding tube. He freaked at imminent death and got the feeding tube in May. He’s back up over 110lbs.
The problem in my state is that assisted living centers cannot do feeding tubes (unless they have the highest level of certification) so we put him in independent living. However, home care aides can not assist with feeding tubes only RNs. Which are pricey. He gets 3 feeds a day and Rizoule 2 times a day on an empty stomach. So that’s 5 trips to feed and medicate him. I found an assistive living person licensed to do tube feedings 25 minutes away and he refuses.
I have a busy home life of my own with a family to raise. Plus, I need to go back to work. I am so angry with him. He squandered so much money running a business that he doesn’t have the means to live the way he wants——independent with people to do the feedings so it’s all on me for now. Which is not sustainable.
And he’s so unreasonable and selfish with his requests and demands. He sends away the home health aides in the morning if they are new because he doesn’t want to deal with the change. He is texting me constantly and questioning my whereabouts.
I have no friends here and no work and no life. And tons of guilt. He needs to go to the assisted living center as he fell last week and had texted me in the middle of the night to come help with the trilogy. He has stated he doesn’t want trach but I am afraid he will freak out again and get it when he can no longer comfortably breathe.
I am trying to get MDs to discuss the process with him but they pawn it off on the next specialist. Primary says the neuro will discuss. Neuro says pulmonary should handle it. Can’t get in to pulmonary until December. He resists everything new until it’s too late, like the feeding tube I am so frustrated and depressed. And the not knowing how long we are planning for and what the next steps are, has me feeling totally overwhelmed.
Sorry for the vent but it did feel good to let all that dirty laundry out.
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