Hi there,
I'm brand new to this forum and joining pretty late in the game. My dad was diagnosed with ALS a year ago and his decline has been steeper and faster than the doctors in San Francisco can believe. He's refusing a feeding tube so he's starving to death. He is completely paralyzed, and losing the ability to move his eyes. He can't swallow. I am fortunate that I live one mile away from my parents, so I visit daily and read to him for two hours in the afternoon.
I'm not looking for tips here - it's too late for my dad. But I will look for a different perspective from other caregivers or perhaps find comfort in hearing from others going through something similar. The level of suffering my dad is experiencing feels overwhelming. I show none of it to him, I'm just trying to fill his days a bit more with the stories that we're reading. This is all unbelievably painful. I hope I can also offer some support to others out there too. So...hi, everyone.
I'm brand new to this forum and joining pretty late in the game. My dad was diagnosed with ALS a year ago and his decline has been steeper and faster than the doctors in San Francisco can believe. He's refusing a feeding tube so he's starving to death. He is completely paralyzed, and losing the ability to move his eyes. He can't swallow. I am fortunate that I live one mile away from my parents, so I visit daily and read to him for two hours in the afternoon.
I'm not looking for tips here - it's too late for my dad. But I will look for a different perspective from other caregivers or perhaps find comfort in hearing from others going through something similar. The level of suffering my dad is experiencing feels overwhelming. I show none of it to him, I'm just trying to fill his days a bit more with the stories that we're reading. This is all unbelievably painful. I hope I can also offer some support to others out there too. So...hi, everyone.