heatherlev
New member
- Joined
- Apr 22, 2005
- Messages
- 7
My brother was diagnosed with ALS a few months ago. He can still talk, breathe and swallow fine, but otherwise is totally disabled (can't stand up, uses a wheelchair, etc.).
He is thinking about whether he would want to use a respirator & feeding tube when he needs them, or not. He is mainly afraid of what his life would be like if and when he is no longer able to move or possibly communicate; I think he is afraid he would not be in a good environment, wouldn't be listened to even if he could communicate, or might be terrified and depressed and unable to handle the fear or paralysis. Both our parents are alive and he is currently living at home with them, but we don't know whether he could or should continue living at home if/when his symptoms progress. Also, we have no clue where he would live if not at home, and what his environment would be like.
Honestly, I don't know what his quality of life would be like. I told him that we would support any decision he makes, and that any decision is his alone. I actually think he probably doesn't need to make a decision just yet. However, he also doesn't have enough information about what life is like on life support to make a decision about whether he would choose it.
If anyone on this discussion board is either living on a ventilator or else knows someone who is, I think we'd like to know what their life is like, how they communicate, how to make the most of the life you have, whether it is bearable, etc. I think we'd also like to hear from people who chose not to use a ventilator...
I know this is a tough and emotional topic, but any opinions on this topic are welcome. Thanks.
He is thinking about whether he would want to use a respirator & feeding tube when he needs them, or not. He is mainly afraid of what his life would be like if and when he is no longer able to move or possibly communicate; I think he is afraid he would not be in a good environment, wouldn't be listened to even if he could communicate, or might be terrified and depressed and unable to handle the fear or paralysis. Both our parents are alive and he is currently living at home with them, but we don't know whether he could or should continue living at home if/when his symptoms progress. Also, we have no clue where he would live if not at home, and what his environment would be like.
Honestly, I don't know what his quality of life would be like. I told him that we would support any decision he makes, and that any decision is his alone. I actually think he probably doesn't need to make a decision just yet. However, he also doesn't have enough information about what life is like on life support to make a decision about whether he would choose it.
If anyone on this discussion board is either living on a ventilator or else knows someone who is, I think we'd like to know what their life is like, how they communicate, how to make the most of the life you have, whether it is bearable, etc. I think we'd also like to hear from people who chose not to use a ventilator...
I know this is a tough and emotional topic, but any opinions on this topic are welcome. Thanks.