ladyfalc
New member
- Joined
- Mar 7, 2008
- Messages
- 1
- Reason
- CALS
- Diagnosis
- 02/2008
- Country
- US
- State
- IL
- City
- Lindenhurst
Hi
My mom was diagnosed 1/08. Bulbar symptoms started 6/07. We have been doing what we can to cope. My dad passed away 5 years ago. My mom still lives alone - a position that is threatened more and more every day. We are currently searching for someone to live-in with her as she does not want to go nor do we want her to go to a nursing home/facility. I have 2 sisters and a brother, although most of the responsibility comes to me - which is fine but hard sometimes. I live 45 minutes away from her. I drive up when I can but I have 2 kids and it is hard sometimes. Fortunately, she is still able to drive and comes down to me often to stay for extended weekends. My kids are wonderful with her. Isn't it amazing how kids can adapt to things? I just worry about them and her as she worsens... Obviously, this arrangement won't work for long. My mom and I are very, very close - we had become so much closer after my dad died which I SO appreciate now.
I can't believe how cruel and terrible this disease is! It is unthinkable to see such a strong, independent woman completely fall apart before your eyes. It seems that she is progressing much more rapidly now! She can hardly talk. A little while back, at least I could understand most of what she said. Now that is gone. She is getting weaker but she can still walk, drive and pretty much take care of herself. She is telling me she is getting scared and feeling vulnerable which devestates me. She sometimes wakes up with too much phlegm in her throat that she can't cough up and can't catch her breath. We have a suction machine being delivered to her today. She also has a feeding tube of course as eating is almost impossible.
I feel that this is just a hopeless chasing act. Each time this horrible disease reaches a new level and affects our loved ones in a different way - we scramble to try and give them the quality of life they so deserve. It makes me start to question my faith - which is very upsetting. How can God let people suffer like this! It is so unfair and cruel. I have been quietly reading posts on this site for a while. You all offer so much support and assistance. It is a wonderful, comforting place to be. I thought I'd share a bit of our story. My heart goes out to all affected by this terrible disease.
- Maggie
My mom was diagnosed 1/08. Bulbar symptoms started 6/07. We have been doing what we can to cope. My dad passed away 5 years ago. My mom still lives alone - a position that is threatened more and more every day. We are currently searching for someone to live-in with her as she does not want to go nor do we want her to go to a nursing home/facility. I have 2 sisters and a brother, although most of the responsibility comes to me - which is fine but hard sometimes. I live 45 minutes away from her. I drive up when I can but I have 2 kids and it is hard sometimes. Fortunately, she is still able to drive and comes down to me often to stay for extended weekends. My kids are wonderful with her. Isn't it amazing how kids can adapt to things? I just worry about them and her as she worsens... Obviously, this arrangement won't work for long. My mom and I are very, very close - we had become so much closer after my dad died which I SO appreciate now.
I can't believe how cruel and terrible this disease is! It is unthinkable to see such a strong, independent woman completely fall apart before your eyes. It seems that she is progressing much more rapidly now! She can hardly talk. A little while back, at least I could understand most of what she said. Now that is gone. She is getting weaker but she can still walk, drive and pretty much take care of herself. She is telling me she is getting scared and feeling vulnerable which devestates me. She sometimes wakes up with too much phlegm in her throat that she can't cough up and can't catch her breath. We have a suction machine being delivered to her today. She also has a feeding tube of course as eating is almost impossible.
I feel that this is just a hopeless chasing act. Each time this horrible disease reaches a new level and affects our loved ones in a different way - we scramble to try and give them the quality of life they so deserve. It makes me start to question my faith - which is very upsetting. How can God let people suffer like this! It is so unfair and cruel. I have been quietly reading posts on this site for a while. You all offer so much support and assistance. It is a wonderful, comforting place to be. I thought I'd share a bit of our story. My heart goes out to all affected by this terrible disease.
- Maggie
