sweetpea
New member
- Joined
- Dec 21, 2006
- Messages
- 7
- Reason
- CALS
- Country
- US
- State
- michigan
- City
- cadillac
I'm the care giver of my 56 year old husband who has Bulbar onset ALS, mirroring exactly the way his dad was who died of ALS in 2000. I feel as tho I am in the eye of a terrible storm, whirrling about and not being able to stop = this is happening SO FAST. He was released as reimbursement officer at our local Community Mental Health office on Jan 6 2006, due to about 2 years of less and less ability to communicate effectively and concentrate on his work. He had been with the agency 24 years.
In January 2006 (and we have been doctoring about 2.5 years prior to this to figure out what was wrong), he was able to speak, write, and use computer, but rather poorly. Now, since about October 2006, he is unable to talk at all. He said the word "MOM" today (that's me), and SNOW on thanksgiving day. I guess where the "whirlwind" feeling comes from is what if he needs something, and is not able to communicate it ? I would hate to think I deprived him of a need due to this inability to communicate.
I guess why I am email is this: isn't this a pretty fast trip we're taking, here ? He has severe problems eating, chokes on saliva, and is drooling alot now. He has difficulties at night when he goes to bed - he's choking, spitting, just not being able to "clear" the stuff in his ?throat? His last lung capacity test showed "marked decrease" per the nurse.
I have a million questions, and we have great doctors in our small, rural community. We take each day as it comes, trying to make it the best we can. "WE" is our 22 year old daughter who is taking care of her dad, and our 18 year old son who is a senior this year, and me. (Plus the 2 cats and the dog that my hubby, Gordie, really loves).
He is so different - that startles me, I guess. His personality is very child-like, and the docs tell me there's the Frontal Lobe dementia with him, just like his dad.
I'm not sure if this is appropriate for an introduction, but since hubby does not speak any more, I CRAVE talking to someone !~!
Thank you all for being here - I can only hope that through all of this I can help someone else........
beth a.k.a. Sweetpea
In January 2006 (and we have been doctoring about 2.5 years prior to this to figure out what was wrong), he was able to speak, write, and use computer, but rather poorly. Now, since about October 2006, he is unable to talk at all. He said the word "MOM" today (that's me), and SNOW on thanksgiving day. I guess where the "whirlwind" feeling comes from is what if he needs something, and is not able to communicate it ? I would hate to think I deprived him of a need due to this inability to communicate.
I guess why I am email is this: isn't this a pretty fast trip we're taking, here ? He has severe problems eating, chokes on saliva, and is drooling alot now. He has difficulties at night when he goes to bed - he's choking, spitting, just not being able to "clear" the stuff in his ?throat? His last lung capacity test showed "marked decrease" per the nurse.
I have a million questions, and we have great doctors in our small, rural community. We take each day as it comes, trying to make it the best we can. "WE" is our 22 year old daughter who is taking care of her dad, and our 18 year old son who is a senior this year, and me. (Plus the 2 cats and the dog that my hubby, Gordie, really loves).
He is so different - that startles me, I guess. His personality is very child-like, and the docs tell me there's the Frontal Lobe dementia with him, just like his dad.
I'm not sure if this is appropriate for an introduction, but since hubby does not speak any more, I CRAVE talking to someone !~!
Thank you all for being here - I can only hope that through all of this I can help someone else........
beth a.k.a. Sweetpea