KrisS
Active member
- Joined
- Aug 19, 2012
- Messages
- 62
- Diagnosis
- 04/2011
- Country
- US
- State
- CO
- City
- Thornton
Hi, I'm new to his forum.
I'm Kris and my husband, Dave, has ALS/FTD. I have been reading posts from this site for several months now and they have helped me cope with daily life with ALS/FTD. I finally decided to become a member so I can participate with all of you. I hope I can be of help to some of you, yet I know I need so much from you. Dealing with ALS/FTD is more difficult than those who do not provide care on a daily basis can understand, and each of us has our own journey to take. I know it's not the same for any two PALS or CALS, but I hope to cope a little better with communication with others going through similar struggles.
Dave was diagnosed in April 2011. He has had a pretty steady decline ever since. I am his full time caregiver. We have 3 boys that are grown 22, 29 and 31 years old. We also have quite a bit of extended family. Everyone wants to do something, but because of the FTD, Dave's communication is almost nonexistent. It makes it harder for me to leave him because even though he has a Dynawrite speaking devise, he can't communicate with others very well. He needs assistance with all his daily tasks. Subsequently, I am uncomfortable leaving him with anyone that can't tell what he needs by his actions. They really have no way of knowing what he wants or needs. This also makes them uncomfortable. My parents spend quite a bit of time with us and can care for him for short periods. I just don't want to put too much on them. Has anyone out there had the experience of extreme communication issues? It's not just that he can no longer speak because of the bulbar issues, but he has a hard time coming up with the right words to type and usually can't spell most words correctly. It makes quite a puzzle sometimes. I'm at a loss for what to do next. Any advice would be greatly appreciated.
Kris
I'm Kris and my husband, Dave, has ALS/FTD. I have been reading posts from this site for several months now and they have helped me cope with daily life with ALS/FTD. I finally decided to become a member so I can participate with all of you. I hope I can be of help to some of you, yet I know I need so much from you. Dealing with ALS/FTD is more difficult than those who do not provide care on a daily basis can understand, and each of us has our own journey to take. I know it's not the same for any two PALS or CALS, but I hope to cope a little better with communication with others going through similar struggles.
Dave was diagnosed in April 2011. He has had a pretty steady decline ever since. I am his full time caregiver. We have 3 boys that are grown 22, 29 and 31 years old. We also have quite a bit of extended family. Everyone wants to do something, but because of the FTD, Dave's communication is almost nonexistent. It makes it harder for me to leave him because even though he has a Dynawrite speaking devise, he can't communicate with others very well. He needs assistance with all his daily tasks. Subsequently, I am uncomfortable leaving him with anyone that can't tell what he needs by his actions. They really have no way of knowing what he wants or needs. This also makes them uncomfortable. My parents spend quite a bit of time with us and can care for him for short periods. I just don't want to put too much on them. Has anyone out there had the experience of extreme communication issues? It's not just that he can no longer speak because of the bulbar issues, but he has a hard time coming up with the right words to type and usually can't spell most words correctly. It makes quite a puzzle sometimes. I'm at a loss for what to do next. Any advice would be greatly appreciated.
Kris