amandaw120
Member
- Joined
- Apr 15, 2014
- Messages
- 12
- Reason
- Lost a loved one
- Country
- Uni
- State
- Florida
- City
- Boca Raton
Good morning everyone.
Took my mom to the ALS clinic yesterday. It's been 6 weeks since the last one. Her breathing has gone down to 23% and we are very concerned. Her progression has just happened so fast that we just can't catch up. In Jan. her breathing was 86%, then March it was 56 and now 6 weeks later it's down to 23%.
She has difficulty swallowing, but can still speak. She actually speaks very well although it is definitely labored. She can still eat, she ate scrambled eggs and toast for breakfast. She has progressed so much that they can't do a feeding tube the normal way, she would have to go to a specialist. She has always said she didn't want one, but now faced with death, she doesn't know. They also said if she wanted a tracheostomy, she would have to do that now. She is only 62, her first symptoms appeared 7 months ago. She doesn't want to die and I have no idea what to do for her. I don't want her to die either, but I know that it is no kind of life either. The doctor told her only 9% of people in this situation do a trach.
The respiratory therapist said that he can't give a time frame, but to just look at her progression thus far. I am so scared for her. Can anyone please let us know what we can expect?
The doctor said to my father in private he would not do a trach, but it's a decision she has to make. He said we should call hospice in ASAP. We have been trying to get this custom wheelchair, it's supposed to be delivered in the next week or so. Do we wait until we get the wheelchair before hospice or do we say screw it since who knows how long she would actually be able to use it? The wheelchair will be like $5,000 out of pocket. Also, they said that we would have to do the feeding tube before hospice, is the feeding tube worth getting at this point since she can still eat?
Thank you
Took my mom to the ALS clinic yesterday. It's been 6 weeks since the last one. Her breathing has gone down to 23% and we are very concerned. Her progression has just happened so fast that we just can't catch up. In Jan. her breathing was 86%, then March it was 56 and now 6 weeks later it's down to 23%.
She has difficulty swallowing, but can still speak. She actually speaks very well although it is definitely labored. She can still eat, she ate scrambled eggs and toast for breakfast. She has progressed so much that they can't do a feeding tube the normal way, she would have to go to a specialist. She has always said she didn't want one, but now faced with death, she doesn't know. They also said if she wanted a tracheostomy, she would have to do that now. She is only 62, her first symptoms appeared 7 months ago. She doesn't want to die and I have no idea what to do for her. I don't want her to die either, but I know that it is no kind of life either. The doctor told her only 9% of people in this situation do a trach.
The respiratory therapist said that he can't give a time frame, but to just look at her progression thus far. I am so scared for her. Can anyone please let us know what we can expect?
The doctor said to my father in private he would not do a trach, but it's a decision she has to make. He said we should call hospice in ASAP. We have been trying to get this custom wheelchair, it's supposed to be delivered in the next week or so. Do we wait until we get the wheelchair before hospice or do we say screw it since who knows how long she would actually be able to use it? The wheelchair will be like $5,000 out of pocket. Also, they said that we would have to do the feeding tube before hospice, is the feeding tube worth getting at this point since she can still eat?
Thank you